tag:blogger.com,1999:blog-55021813504004012632024-03-19T02:17:53.674-07:00HayesMoMoGirlsSara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-5502181350400401263.post-56504645431401779642012-12-02T18:13:00.001-08:002012-12-05T21:25:18.920-08:00Graduation DayIt was more than 5 months ago I last wrote in this blog, with the final sentence being: <br />
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<span style="font-family: "Times New Roman", "serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><em> "Its gonna be a tough summer."</em></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Hanna & Ashlyn</td></tr>
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Well, I was right on that one....It was a rough summer. <br />
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Once Ashlyn & Hanna got home, it has been a whirlwind....Very little time to breathe, much less write. No sleep, lots of bottles; lots of diapers......<br />
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Today, I feel compelled to re-open this blog, along with many of its painful memories. I spent some time reviewing some of the old posts from last March & April, including "The Junior Partner" & others. It brought back a flood of memories; Wow....what a scary and trying time indeed, and it some ways seems like a dream of long ago....<br />
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There is a compelling reason to write tonight; After an incredibly difficult summer, despite enormous difficulties, huge obstacles, and significant challenges. Despite all the ups and downs, the rollercoaster of emotion, the scary moments, the sleepless nights...The severe reflux, the feeding tubes, the oxygen tanks; The medication cocktails...Despite it all.....<br />
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<strong>This week we learned that our girls are healthy, happy, normal little girls. They are OK!</strong><br />
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We visited Dr Rosenberg down at the special care clinic today, for the girls monthly check-up...He gave us the words we had been dreaming to hear for almost a year since this process started. <br />
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<em>"Your girls are healthy, they don't need medications or oxygen anymore; In fact, you don't need to come see me anymore. Your next doctor visit is with your regular pediatrician. Congratulations, your girls have graduated from the special care clinic."</em><br />
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I sat in dumbfounded silence in the office, slowly understanding how incredible this news was. I don't think its fully sunk in. As Sara and I walked out of the hospital office in Aurora afterwards, the reality of what had just transpired started to unfold. <br />
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<tr><td class="tr-caption" style="text-align: center;">The Tinymights</td></tr>
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"Did he just say we're done?" I asked Sara. "We don't need to come back? Our girls are good to go?"<br />
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"Yep!" Sara shimmered with a smirk. "We did it....We made the right decisions, we were blessed. It worked. We did it!"<br />
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Although the weight of the experience still looms and has taken its toll on both of us, it feels as if most of the weight of anxiety, fear, sadness, and pain is falling away. Instead, new "normal" feelings of joy, wonder, amazement, laughter, and love are moving in. <br />
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It was a year ago this week that we were delivered the horrifying news that we were having momo twins; That this was going to be a rough ride; that the risks were huge; We didn't sleep knowing the next visit to the doctor for an ultrasound could find one or both of our babies dead in the womb. We lived in a world knowing we were going to have pre-mature babies, and were paralyzed by fear of the unknown outcomes.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEvUlSXhORN5uOZublh7NV4auRtxQTr8heZnSBwgYScYNuSveBrbyWsNxepzGw70DnTUagnohfCgzA2zAD7SChhfMeR3iY4iUom5sDyVxGgl9aI3rpjb485O4Px8qKeyujgUGRAqOmn2Us/s1600/120922_Sara_040.jpg" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEvUlSXhORN5uOZublh7NV4auRtxQTr8heZnSBwgYScYNuSveBrbyWsNxepzGw70DnTUagnohfCgzA2zAD7SChhfMeR3iY4iUom5sDyVxGgl9aI3rpjb485O4Px8qKeyujgUGRAqOmn2Us/s400/120922_Sara_040.jpg" tea="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sisters</td></tr>
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A year later, after an unbelievable roller coaster ride of ups and downs, our girls are "good to go"......Unreal!<br />
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That all said, we are not completely out of the woods. The girls are still at higher risks for contracting RSV this winter, and will be getting shots for prevention. There may be other obstacles presented in the coming months, its hard to know for sure. However, it feels like the worst is past.<br />
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With that unbelievably happy news said, I will try to recap the last 5 months on how far we have come and how we got here.<br />
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We begin with Hanna coming home in early June; She was on a feeding tube, and having real trouble eating. It was obvious that the feeding tube was bothering her ability to eat, and agitating her stomach, but she needed the nutrition and kept having severe reflux and aspiration. <br />
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About 3am one night, Hanna was in our bed and Sara rolled over; In the process she snagged little Hanna's NG tube literally ripped it right out of her nose and throat. I recall hearing a "whoosh" and then we both sat up in bed with an "holy crap, what just happened.!?!?" Once we realized what had transpired, we were wide eyed with shock but also giggled about it. Amazingly, Hanna reacted pretty well...she quickly starting feeling better, and the next day had some great feeds. From that night on, we never looked back....that was it...The tube was never replaced and Hanna learned how to eat. <br />
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<tr><td class="tr-caption" style="text-align: center;">Da Girlz.....</td></tr>
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It was an arduous process; Tony Slocum (Sara's Dad) spent many an early morning and multiple times a day patiently feeding Hanna;Taking her upstairs to a "quiet" zone, calming her, reading her movements and reactions, and slowly but surely getting her to take a bottle. It took a month or more; early on she wasn't really getting the required volume of milk she needed, but slowly she grew into it. <br />
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Ann & Tony (Sara's parents) lived with us from June-August and were amazing. As previously stated, we would have been dead without them. <br />
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The nightly program was to make bottles, with all their various medications, mixing frozen breast milk with formula for the right concoction; Then feeding at 4 hour intervals all night, every night. Usually around 10pm, then again at 2am, then a 6-7am wake up call of a howling, hungry baby....As the summer wore on, Tony would take the morning shift and take the girls downstairs for the early am feeding, leaving us a few extra hours to sleep which was HUGE. <br />
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<tr><td class="tr-caption" style="text-align: center;">Ann &Tony "On Duty"</td></tr>
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The lack of sleep was a killer....Walking around in a zombie state most of the day, I craved the opportunity to go on business trips so I could SLEEP. That, coupled with the madness of the twins + a two year old (Rylan) made and make for a pretty crazy household....Three kids in diapers at once is no small feat.<br />
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Anne & Tony departed in late August, and we were on our own....We fell right into the groove, and quickly realized we were going to need help. A neighbor had mentioned that had recently gotten an "au-pair", a family nanny/helper and that they were really liking it. After some discussion, interviews, and a few skype sessions to Europe, we found Anne. She is 21, and from "the country" about 3.5 hours Northwest of Copenhagen Denmark. She is from a small town named Soften which is near Aarhus. She has been a wonderful addition to the family....A responsible, fun, athletic girl, she is GREAT with the children; She cooks great meals and has been a fantastic addition to the house. <br />
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Anne (pronounced Ann-eh) arrived in mid September. I picked her up at Denver Intl airport, only knowing her by the few skype conversations we had. It was a big gamble for her and for us; I must say we have been very lucky. She is amazing, and fits in perfectly with our family. <br />
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<tr><td class="tr-caption" style="text-align: center;">Anne the Au-Pair with the crew</td></tr>
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With Anne on board, and the girls growing, September & October past us by fairly quickly. Most of the meds the girls were taking were gone by now; Hanna still had some mild reflux, but we had pretty much stopped giving her the Prevacid by October as I recall. Ashlyn was still on Oxygen, and that was it. Healthy and happy.<br />
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Which brings us up top the present day; With this weeks visit, Ashlyn has been officially cleared to be "off" oxygen. That resolves the only outstanding issue that we are aware of. <br />
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We have Healthy Girls!!!!!<br />
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While you're never out of the woods with kids, I feel truly ecstatic that we have made it to this point. I would have never believed that those tiny 2 lb babies, struggling to survive in the NICU despite a myriad of complicated medical issues, could ever turn out to be the precious little cute babies we have now. It really is a miracle.<br />
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Their personalities are starting to show as well...Hanna is the social butterfly; She is quite talkative, and can be very loud. I imagine her to be more like dad...Whereas Ashlyn is a bit more reserved; she will often observe the situation in silence for long periods of time, before laughing uncontrollably for a brief moment. I imagine her to be more like mom....<br />
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<tr><td class="tr-caption" style="text-align: center;">Xmas is coming</td></tr>
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Rylan is an amazing big brother...He often consoles both girls when they cry with "its OK Hanna, Its OK Ashlyn...Stop crying"....as he pets them on the head...so cute. </div>
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Thats all to report for now. Thanks for the support and love during this crazy year. It has really been something.</div>
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I will try to update this blog about once a month going forward to catalog the girls progress as they grow.....</div>
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Go TINYMIGHTS!</div>
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<tr><td class="tr-caption" style="text-align: center;">Sara has her hands full!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Daddy's girls</td></tr>
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-6106990181583348792012-06-12T20:02:00.000-07:002012-06-12T20:03:46.793-07:00Hanna is HOME-Now the real work beginsIt is with great joy we report that Hanna came home from the NICU last Friday night, completing a long chapter of this journey. Both girls are now HOME, spending 82 and 94 days in the NICU respectively.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOnVag7cID3PBkczpesA7P7rantn1crFTM4qpWRKz5l-R_6Lll5M9oBkli9wHG2aDzOOvvrhFF22b_yGsVzo73ciQVh-PRJ875xY3dNOyKyJR4f_Y1HogblyTFtEgaJYhBdtO92FaVH7Qh/s1600/Tony's+Camera+030.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" fba="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOnVag7cID3PBkczpesA7P7rantn1crFTM4qpWRKz5l-R_6Lll5M9oBkli9wHG2aDzOOvvrhFF22b_yGsVzo73ciQVh-PRJ875xY3dNOyKyJR4f_Y1HogblyTFtEgaJYhBdtO92FaVH7Qh/s400/Tony's+Camera+030.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The girls come home</td></tr>
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It is quickly becoming apparent with both girls home, that this journey is actually just beginning.</div>
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I liken the experience to brave climbers who attempt Mt Everest in Nepal. These teams of individuals train for months/years to physically and mentally prepare for an ascent of the worlds tallest peak. They then fly to Katmadhu, travel to Everest base camp, and begin weeks of acclimation. When ready, they then lay siege to the mountain; Slowly making their way over dangerous terrain, navigating the treacherous way between crevasse's, ice falls, avalanches, with extreme wind and cold.. A false step, a bad judgement call, or fatigue can result in death. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpBuY7x2DEFvCuui7E8M98eA42dmpwUNMN7t5MhE5LowtCMtQFKq5ukfFHXno89ewQXNvdJRnsS5LTAh6N2qd2SJ9V2S0uQJXYQTMMb3cx7p0VTrM-yVE-PDlUSL4xDFaUwAhp9TF2VYLO/s1600/Tony's+Camera+028.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" fba="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpBuY7x2DEFvCuui7E8M98eA42dmpwUNMN7t5MhE5LowtCMtQFKq5ukfFHXno89ewQXNvdJRnsS5LTAh6N2qd2SJ9V2S0uQJXYQTMMb3cx7p0VTrM-yVE-PDlUSL4xDFaUwAhp9TF2VYLO/s400/Tony's+Camera+028.jpg" width="400" /></a>After weeks of shuttling loads between base camp and camp I, climbers ascend to camp 2. Then repeat to camp 3, 4, and 5.....The steps are slow; agonizingly slow. Step, breathe, step, breathe...It can an take an hour to travel just a few hundred yards. 2 steps forward, stop, catch your breath, then 2 more steps. Progress is painfully slow.</div>
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After they are thoroughly exhausted, then they wait for a break in weather and go for the summit. Successful teams leave at midnight, and summit at nearly 29,000 feet before around noon the next day.<br />
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After such a long ordeal, the successful climber stand atop the mountain and rejoice at the amazing accomplishment. Flags are waved, pictures taken, and tears shed. The views must be incredible. <br />
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But wait!? After a few short minutes at the top, the focus quickly changes. WE STILL HAVE TO GET DOWN....And getting down might just be the hardest part. Descents are commonly more dangerous than ascents, and having spent an enormous amount of energy to reach the top, many have little reserves left.</div>
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The first few days/nights with the girls home have been quite an adventure. It's becoming clear that the view from the top, represented by the girls coming home was great. But very short lived. We have now entered a much harder phase.</div>
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<tr><td class="tr-caption" style="text-align: center;">NANA</td></tr>
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First off, as Nana (Ann Slocum) puts it "The NICU moved to Boulder." Our house has been infiltrated by oxygen tanks, lines and cords, Pulse Ox machines, Feeding tubes, syringes, medications, and diapers. Both girls are on Oxygen; Hanna is on a very minimal amount, and doesn't really need it. However she was sent home with O2 as a precaution in case she aspirates some breast milk due to her feeding problems. Ashlyn has a slightly higher oxygen requirement, but is looking good.</div>
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Both girls have 3 medications they take every day, some of which are injected into Hanna's feeding tube (which runs into her nose, down her throat, and into her stomach), or ground up pills that are included into breastmilk bottles.<br />
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Both girls feed every 3-4 hours. This requires an enormous effort to make it happen. Ann & Tony are performing heroic duty on a daily basis; without their help, we would already be dead.<br />
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Mixing formula, thawing frozen breast milk, measuring bottles, adding fortifiers...Then heating bottles, and delivering. Ashlyn is a fairly good eater, however Hanna has a serious feeding problem. She will start a bottle, and then halfway through start to gag and choke and make a horrendous, blood curdling moan....Its scary. If we cant get her to take a full bottle, sh then has to be "gavaged" through her feeding tube. This requires hooking up the feeding machine, measuring the breastmilk to put in, setting a dose and flow rate and "plugging her in". Often after she is fed, she squirms about in obvious discomfort and pain. Its extremely difficult to watch.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYZbUm8eQUuEe73BrKveIu7ceBAGofqwIRx7wnVnEoYQN9niRPzC0o-IWLpjC9LCwaOl3ylZHRox20V9XyUKtBcXdQMLIPaaj0mqWwvFh80uyO3Yb-VD6l-sErnZKMiabchtXQeULLtfTU/s1600/Tony's+Camera+031.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" fba="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYZbUm8eQUuEe73BrKveIu7ceBAGofqwIRx7wnVnEoYQN9niRPzC0o-IWLpjC9LCwaOl3ylZHRox20V9XyUKtBcXdQMLIPaaj0mqWwvFh80uyO3Yb-VD6l-sErnZKMiabchtXQeULLtfTU/s400/Tony's+Camera+031.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The morning routine, Rylan participating</td></tr>
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Here is an excerpt from Ann Slocum's description of the situation, which is right on.....<br />
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<span style="font-family: "Times New Roman", "serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><em>I have found that with two there is really no time to even write a note except a very brief one. just returned from feeding Ashlyn. Gaga is out to the store with rylan, sara is pumping and I expect tony went upstairs for anap. Two babies are home but there is always a constant worry about oxygen and Hanna' s feeding and severe acid reflex. Hanna has no cry which is a blessing in a way but a worry too but if she could cry then there might be alot of crying since one can see her tummy is hurting. Ashlyn is a good eater and easy baby. She cries when she is hungry or has poopy pants and that is abut it. She had her first doctor appointment last week and was doing well. Both girls go again this Thursday. We keep records of feelings,time,pees, poops, medicine, volume of intake and any notes. This weekend the kids did it all at night and we took the babies at around 6 to 7 and they went back to sleep. Rylan to good at keeping his voice down and I taught him to whisper which he thought was good fun. <br /><br />The girls live downstairs during the day and upstairs at night. So two swings go back and forth. One feeding apparatus, oxygen gets unhooked from the small tanks and rehooked on the big tanks in the upstairs hallway. Both girls have oxygen but Hanna really does not need it so much except for when she is feeding and might desat. For us that means trying not to get oxygen tubes tangled and keeping the lines onto the two sides the room. We are gaining knowledge about that. Ashlyn is also on a monitor so more cords too. </em></span><br />
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<span style="font-family: "Times New Roman", "serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Thats it for now. We can hope and pray that Hanna's feeding issues clear up over time, hopefully sooner than later, and things will get easier. Its gonna be a tough summer.</span><br />
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-19491587928831768552012-06-04T07:44:00.000-07:002012-06-04T07:44:53.101-07:00Halfway there-Ashlyn is HOME!Well, it finally happened. The day we have been waiting for for nearly 3 months. Last Wednesday night, after 84 long days in the NICU, Ashlyn Hayes checked out of the hospital and came home. Hanna is still there, and we are very much hoping she is right behind her sister and will be coming home soon.<br />
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<tr><td class="tr-caption" style="text-align: center;">Happy Parents</td></tr>
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As we walked out of the NICU, Ashlyn had plenty of firsts. First time off the 4th floor of UC Hospital. First time on an elevator. First FRESH AIR and we walked out of the building, and her first time outside.....First car ride, first time in her OWN home, and her first hearing the relative quiet of the home environment vs the hospital.....</div>
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Getting Ashlyn "sprung" was hilarious....The whole check out procedure was a bad comedy show. The NICU nurses have been so impressive over the last several months, but as they handed us off to the "check out crew" we saw what can go wrong.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguGoJeWpVmasbD9T3ka60LWTwmtwcYdNx5umJDZHNA2fzVNG_V3g4JwPtiUYVwQoXTF-YdYDCU7psw2ZRKx2SgHLs4McFniXNhfVR66UfOO6njh_VJWxUsbZwydxcbluHAi6tMQ99gXwJS/s1600/Nana+&+Ash.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" fba="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguGoJeWpVmasbD9T3ka60LWTwmtwcYdNx5umJDZHNA2fzVNG_V3g4JwPtiUYVwQoXTF-YdYDCU7psw2ZRKx2SgHLs4McFniXNhfVR66UfOO6njh_VJWxUsbZwydxcbluHAi6tMQ99gXwJS/s320/Nana+&+Ash.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nana happy to see Ashlyn home</td></tr>
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The first drama was the "oxygen" guy. Ashlyn was sent home on Oxygen, and we expect she will need to have it for several weeks/months as her lungs continue to develop. So "Paul the Oxygen guy" shows up at the NICU, and prepares us with an Oxygen tank and a Oxygen sensor to go home with.</div>
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However, Paul is beyond clueless. My first question is "How long can we expect this this Oxygen tank to last?" He scratches his head, and with a goofy look says "You know, I'm not really sure...maybe like 5 or 6 hours I think." You might think the O2 guy knows how long the tanks last. So, that starts the clock ticking in my mind...."its 5pm now, we need a new tank by around 11pm.."<br />
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We get Ashlyn home, and are then waiting patiently for the Apria healthcare van to come by and drop off our additional O2 tanks. At 10pm they call, just as my blood pressure is rising , and the guy says "I'm about an hour and a half out, but I could just come tomorrow if that would be more convenient..." Tomorrow? This damn tank is going to run out of air in like an hour! Get over here NOW I tell the guy.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtHsX_UtJjYJCyzonwrpdxZN5agWnWVK0LUFD4PTqpSt_lDvx6OSpYuZ4O4LzWMqUkxj2VjUQnhGXIt-iHxy1_9GbDm9g3VGkzf_dpKgYWw-wWZ-FkZa2ktWaf4zAVoRCsJNYUFWV46jNY/s1600/TM+Ash+goes+home.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" fba="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtHsX_UtJjYJCyzonwrpdxZN5agWnWVK0LUFD4PTqpSt_lDvx6OSpYuZ4O4LzWMqUkxj2VjUQnhGXIt-iHxy1_9GbDm9g3VGkzf_dpKgYWw-wWZ-FkZa2ktWaf4zAVoRCsJNYUFWV46jNY/s320/TM+Ash+goes+home.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiny Might Ashlyn </td></tr>
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At this point I'm starting to freak out....Pacing around the house, thinking through plan B and Plan C....OK, I'll drive over to Boulder hospital, and get an extra tank and make it it back before this runs out, I'm thinking.<br />
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Finally the guy shows up, and tell us "yeah, that tank you have last like 5 or 6 days not 5 or 6 hours....." Unreal. So after all that drama, I just giggle and laugh it off.....<br />
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The first few nights with Ashlyn at home have been rough...Up every 3-4 hours feeding, hearing the "beep beep" of the O2 sensor. And this is only one kiddo.....When Hanna comes home, its truly going to be epic.....<br />
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Ashlyn seems to be settling into her new routine, and is enjoying having Nana and Grandpa (Sara's parents) around to help with her. <br />
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Rylan seems curiously amused by his new sister as well...He has had a few temper tantrums, but overall seems to be pretty happy to have a sister in the house.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn Home!</td></tr>
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It feels like we are now entering chapter 3, and it seems that the bar keeps getting pushed higher. Chapter 1 was the pregnancy experience and complete with stress and fear...Chapter 2 was the NICU in all of its incarnations, and now we enter chapter 3...Home life. This is NOT going to be easy.<br />
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<strong>Hanna:</strong><br />
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Still in the NICU- Her final hurdle remains feeding. She doesn't like it, and is still only able to take about 2 bottles worth per day (about 25% of her daily feeds) by mouth, but is showing steady improvement. A combination of a bad emotional association with feeding and aspiratrion and slowly learning how to get the suck,swallow, breathe reflex is likely to blame.<br />
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When she can take 50% of her feeds via bottle then Dr Rosenberg advises us that he will "spring" her, and we will have to administer 50% bottle feeds combined with 50% NG (Gavage) tube feeds for her. That means I'll have the lovely honor of jamming a feeding tube up her nose and down her throat into her stomach. She's used to it, having been fed this way for 12 weeks now...I'm not. <br />
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The last 2 days she has shown real improvement and the latest we heard was that its possible she could "get it" this week and potentially skip the feeding tube and go right ot full feeds....We will see!<br />
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Regardless, we need to get her home and think its going to happen this week.<br />
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<strong>Ashlyn: </strong><br />
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HOME....Her O2 requirement seems to be pretty mellow, and despite having to navigate carrying her upstairs/downstairs with her long oxygen tube, she seems good. She is still a true TINY MIGHT. Pretty small, especially compared to her sister, but seems happy to be home.<br />
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Thanks for all the prayers, love and support....One more round for Hanna to learn how to eat so we can get her home!<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz0fxq-xsyfrPmrnoTlpl_0G2Ub0oPbE0od-PAkEzh2dyYBhlPL4bqELDa5cvVNaT3-eJDv4695EfdTarW0QQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com4tag:blogger.com,1999:blog-5502181350400401263.post-84428724767392283242012-05-28T19:39:00.002-07:002012-05-28T19:40:57.330-07:00Day 82-False Summit<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">
Summertime has arrived in Colorado, and its beautiful out. High in 70's and 80's, no humidity, sunny days, and snow capped peaks in the distance. The snow is melting early this year, as it was a one of the least snowy winters in some 20 years. This is bad for the rivers and reservoirs, but great for early season mountaineering. I love to run around in the mountains, and climbing in the Colorado 14'ers has been a favorite pastime for many years.</div>
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If you have ever spent anytime climbing peaks in the mountains, then you're familiar with "false summits". You've ascended the mountain through multiple different zones, popped out of the forest at treeline, and can now see a long ridge that leads to the summit. You angle towards the ridge, but the difficulty unexpectedly increases. You persevere onwards, and after battling through altitude, fatigue, potential weather, and various other obstacles, you arrive at the summit. But wait, this isn't the top?!?!</div>
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<tr><td class="tr-caption" style="text-align: center;">The girls</td></tr>
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As you arrive at what you thought was the summit, you see before you see a sight to behold...Another long ridge, that ascends towards what looks like the "true summit". It looks deceivingly easy and close, however the very top of the mountain is shrouded in clouds and mist, making it difficult to tell how close you really are. With a sigh and a renewed push, you set forth from the ridge into the unknown above.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWj3mKPXZPavMGmNRRvs8-l2wmJYsqgrV_dPaV5XMxUghwTffVoLm9kV2Q9V-XuEeov-rRvW9moQenb594EHHDwFjM93DkdswMOGTZw6YwAckPFdao1Uo0Wyr9qno1-r7Uo_7z3jgR-8_U/s1600/Hanna+finger.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" kba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWj3mKPXZPavMGmNRRvs8-l2wmJYsqgrV_dPaV5XMxUghwTffVoLm9kV2Q9V-XuEeov-rRvW9moQenb594EHHDwFjM93DkdswMOGTZw6YwAckPFdao1Uo0Wyr9qno1-r7Uo_7z3jgR-8_U/s400/Hanna+finger.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanna gives the finger to the bottle...</td></tr>
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The last 20 days or so in the NICU has indeed been a push to a "false summit". I honestly didn't write in this blog the last 2 weeks or so, because they wasn't much to report. The girls are "feeder/growers", and are growing nicely. There were no issues to speak of, and all indications were that they were going to get of of the NICU by "around" Sara's original due date, which was May 24th. However, last week things got interesting with Hanna, and indeed we hit the false summit. The good news is that the girls are relatively good, and are coming home soon. Maybe as soon as this week. The bad news is that they are not quite ready yet. </div>
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I know that Sara and I are ready. </div>
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As we reminisced about last night, this has been a difficult adventure for both of us; no doubt the hardest thing we have been through both individually and as a team. Starting out in October of 2011 when we learned about our "momo twins", it has been a long and painful journey of unrelenting fear, uncertainty, hardship, and stress. I explained it to a colleague the other day as "Instead of feeling all the joy associated with the birth of your daughters, you get about 10 minutes of pleasure and then get immersed back into the muck."As Sara put it, its like living in 2 worlds. One world is your "normal" life....House in Boulder, beautiful son, great friends and family around, and sunny days. The "other" world is the NICU where your 2 daughters live. Its a windowless world of beeps, alarms, IV's, oxygen tanks, worried faces, and scary sights. It's a weird double life.</div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna all cuddled up</td></tr>
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That said, Sara has been an incredible rockstar throughout. I always have known her to be tough, but she has clearly arrived at a new level now. Commuting down to the NICU every day, always a hopeful smile on her face. "Pumping" breast milk all day/night every day for the last 3 months to feed the girls, despite them not living under the same roof as us. Most women I know would have cracked by now. The girls and I are lucky to have such tough mama.<br />
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We are close....Tantalizingly close to having the girls come. </div>
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<strong>Hanna:</strong></div>
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<tr><td class="tr-caption" style="text-align: center;">PT for bottle feeding for Hanna</td></tr>
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She's 7 1/2 lbs now, and looks great. However, she has been the primary source of worry in the last few weeks, as she pulled a "freaky Friday" with her sister Ashlyn. That means she changed places with her sister and has amazingly assumed the "most worried about" status.<br />
Her primary issue is feeding. Early last week, she was not eating well, and showed all kinds of discomfort after getting her feeds. Writhing around, hiccups, squirming, gas...all of it. Preemie babies don't know how to "suck/swallow" until around 34-36 weeks, when they begin to learn how to do it. At 40 weeks "gestation" now, Hanna should be putting together the "suck, swallow, breathe" trifecta and be either sucking on the boob or taking a bottle. This is her last hurdle to master, and then she can be sprung from her prison of the NICU. <br />
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However last week, she had a few bad feeds and began to "aspirate". This happens when fluid she is getting by mouth can't be swallowed correctly, and partially drains down the trachea into the lungs. Very bad. This can lead to all kinds of nasty infections, pneumonia, and all kinds of bad juju. Worse, she emotionally then makes a associatrion of eating with pain, and then doesnt want to eat. This can cascade downhill fairly fast. <br />
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In addition to this, she likely has moderate/severe reflux so she is being given "Prevacid" to help with it. This reflux may be a contributing factor as well to her general unhappiness with feeds.</div>
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So last Wednesday, mouth feedings were discontinued, and Dr Rosenberg came to talk with us. He said its not all that uncommon to see this, but that she need to "figure out" how to eat via mouth soon. Aspiration is a dangerous condition to bring a baby home with, and his suggestion is that is she can't figure it out pretty soon he will recommend a "G"tube. This is a gastric tube that is a direct line into the stomach from outside the chest. It looks like a plastic button on the stomach and you essentially put an feed in directly through a line into it. Not wonderful news, and certainly not a reality we want to face.</div>
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Better news: Today, working with the speech therapist and a PT, Hanna was able to successfully, albeit very slowly, take about 1/4 of a bottle. She had to go extremely slowly, had to be prepped with a binky to get her "cues" going, but the operation was deemed a success. A huge relief! She can do it! It's likely that she simply needs more time to "learn" the suck/swallow/feed" reflexes, and she doesn't want to be rushed.</div>
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So, she is on a "feeding" PT schedule and the hope is this week she can "learn" how to feed properly, which will be her final exam to get out of here. We will see. </div>
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<strong>Ashlyn: </strong></div>
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She's 5.5 LBS now, her growing is slow....but steady. She looking good!</div>
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She is an all-star with bottle and the boob, and has far surpassed her sister in the this department. I'm sure this won't be the only she thing she "one-up's her sister on later in life. She got her feeding tube OUT a few days ago, and no has just her nasal cannula left. </div>
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Her main issue is her oxygen requirement. One of the test they do before they can release a baby is called the "room air challenge". They basically turn off the O2 and see how long the baby can maintain their oxygen level above a certain threshold for 45 minutes.</div>
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Ashlyn made it 6 minutes the first time about a week ago, and then 16 minutes a few days ago. She is showing improvement here, and they will do it again tomorrow. Lung development is ongoing with preemies, and they try to grow/regrow lung cells that were not properly formed in utero. When she comes home, she will definitely come home on Oxygen (both likely will), and then the challenge will be how long she needs it. Hopefully for only a few weeks or months. </div>
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Other than that, she's doing amazingly well for what's she's been through. Near death several times over, and now showing her sister she is indeed the tough one. Unreal.</div>
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Thank you for all thew good wishes, prayers and support. We need another round of help to get Hanna and Ashlyn over the hump...Please channel lots of good thoughts and prayers for healthy eating and breathing for both them! It Works!</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx7UU1UZvt0ZkTlIrj3RZyLbHV_SeAVxbenIGGhAtGdY1Pi6YLOfzjCAkcDKkviTZbXaJ19BEggFHXRaL0WpA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-2813858094494508422012-05-10T20:09:00.000-07:002012-05-10T20:41:10.689-07:00Day 64-UnpredictableAnyone who follows the stock market knows that attempting to "time" the market is a very difficult endeavor. And yet, so many people try....<br />
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Billions of dollars go into "market research" every year-Market timing newsletters, blogs, stock trading sites, professional money managers etc etc....Despite the billions spent, all the technical and fundamental analysis done, and all the time invested.....It remains almost impossible to know what the stock market is going to do tomorrow. Its simply too unpredictable.<br />
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The same is true true for our girls down at the NICU....This weeks report is so crazy, no one could have predicted it....Ashlyn is now the rock star and Hanna is having issues. You just never know what tommorrow will bring.....<br />
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<tr><td class="tr-caption" style="text-align: center;">Hanna</td></tr>
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<strong>Hanna:</strong><br />
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Weighing in now at 6lbs 2 oz......<br />
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Still having some issues....Her PDA remains a concern, but Dr Rosenberg (who is back on rotation this month) tell us that despite her weird symptoms, he still considers her asymptomatic. He seems fairly unconcerned that she is being affected by her PDA, and remains hopeful that she can either:<br />
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<li>Close the PDA on her own over the next few months</li>
<li>Make it to 9-12 months old and around 16lbs and have the "coil" surgery done to close it</li>
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The other alternatives are:<br />
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<li>Do nothing and wait</li>
<li>Ligation surgery, same as Ashlyn</li>
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Her symptoms are pretty unpredictable:</div>
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<tr><td class="tr-caption" style="text-align: center;">Sara & Hanna</td></tr>
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<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Tired-She seems super tired alot, and thus does not want to try and suck on the boob or take a bottle too often. Its not inhibiting her growth, but she is not progressing on learning how to feed.</li>
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For Sara and I, its very frustrating. Hanna has done so well to this point, and is now showing some weirdness. We clearly though we were out of the woods with her, and that seems to not be the case. All we can do is wait and hope she gets it together. The hope that she was coming home in a week or so has faded to the reality that she needs more time.....on the other hand.......</div>
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<strong>Ashlyn:</strong></div>
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Rocking it at 4lbs 14 oz.....</div>
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Ashlyn has now officially claimed "rock star" status. She is pounding down bottle feeding, sucking on the boob, and loving it.She's putting around 2 oz a day, and thriving....And get this....Today Lauren our nurse says "it looks like ASHLYN is going to go home soon, likely before Hanna."...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUeIn_9WU4i9UR3TiKgI0Lxa8Y13laEGX2DJjLtncYwooF_38IbFZxQoLSBhLP-8e-sgyT6m9D6D2TAtF9rxU1bXsEZhVbgW6eRnyzVLlpkP3qhD0E_8u3dQLpjuHKgTCwquBMOnkneZ2M/s1600/Ash+flyin.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dba="true" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUeIn_9WU4i9UR3TiKgI0Lxa8Y13laEGX2DJjLtncYwooF_38IbFZxQoLSBhLP-8e-sgyT6m9D6D2TAtF9rxU1bXsEZhVbgW6eRnyzVLlpkP3qhD0E_8u3dQLpjuHKgTCwquBMOnkneZ2M/s320/Ash+flyin.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn</td></tr>
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WHO COULD HAVE PREDICTED THAT??!?!?</div>
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After all the issues she has faced, she is now looking good. Her only remaining issue, is her oxygen requirement- It is still moderate and she needs to continue to grow lung tissue....Overall, she is doing good.</div>
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Here is a video.....<br />
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-58899217093055803882012-05-04T19:55:00.000-07:002012-05-04T19:55:50.320-07:00Day 58-Changing Landscapes <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUH2GSgHT268-Qw8E4zQV_0i6UNGgzsongucdsKaqTwacCiU-YX_srGls4_N77z1GsJJJBYEelUMXNrHkLWI_CtJ1DKNesvabLQrBnOSbYXXN9iJWTe8PhZC6zMaviJ1qRYcOrzJMtTxv9/s1600/rylan+tiny+mights.jpg" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" mea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUH2GSgHT268-Qw8E4zQV_0i6UNGgzsongucdsKaqTwacCiU-YX_srGls4_N77z1GsJJJBYEelUMXNrHkLWI_CtJ1DKNesvabLQrBnOSbYXXN9iJWTe8PhZC6zMaviJ1qRYcOrzJMtTxv9/s400/rylan+tiny+mights.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family "Tiny Mights" MOD walk</td></tr>
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I spent most of this week in Arizona. Its an unusual state, with varied topography. </div>
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When you drive north from Phoenix on I-17, you start going up....Phoenix sits at an elevation of around 1100 feet or so. Its hot-really hot...It gets near or above 100 degrees from April-October. </div>
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However, as you start traveling north and rising out of the valley, its starts cooling off. The landscape also starts to change dramatically. You go from hot dry desert, through a transiiton zone of rocks & cactus, to a thick pine forest landscape. By the time you get up to Flagstaff at almost 7000 feet, you've entered another world.</div>
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<tr><td class="tr-caption" style="text-align: center;">Journey School friends walking Team Tiny Mights!</td></tr>
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This week in the NICU has yielded changing landscapes, unfortunately not necessarily for the better. My excitement of last weeks post has been replaced with the grim reminder that we are indeed not out of the woods, and even after 2 months in the NICU, the girls are still facing issues. My hope that Hanna was coming home soon is fading........</div>
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<strong>Hanna:</strong></div>
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Weighing in a 5 lbs 13 oz now.....</div>
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Had a sobering discussion with the NICU doctors today. As they explained it, Hanna has been going slightly downhill for the last week or so now. Her oxygen requirements have gone up.....Her lungs look "wet", and she seems to be having a harder time breathing. She is having brady's (bradychardia episodes where her heart rate goes way down) and desats (where her breathing and o2 saturation plummets). </div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna Sleeping</td></tr>
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Just when we thought things were looking good.......The diagnosis is that her formerly "asymptomatic" PDA is starting to rear its ugly head. Its now officially "symptomatic".</div>
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The doctors have done an "echo" and see that Hanna's PDA is still quite large. They have put her on ibuprofen as a sort of "last ditch" effort to close the PDA. We were hoping that the PDA would close on its own, or at least remain "asymptomatic" and not cause her any distress. Unfortunately, that's not the case.</div>
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So....They are starting to talk about "next steps", which includes surgery...the same PDA ligation surgery that Ashlyn had several weeks ago. They are going to bring in the cardiologists next week if the Ibuprofen doesn't help the PDA. Not good.</div>
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Amazing to think that Hanna is now having issues...<br />
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After being the "senior partner" this whole time, and never showing any real problems, its terribly disappointing.<br />
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<strong>Ashlyn:</strong><br />
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn wide awake</td></tr>
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Rocking along at 4lbs 8oz now...Feeding well, and on 100% breast milk with no signs of her Chylothorax reappearing. <br />
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Most notably she is often very alert.....Eyes wide open , awake alot, and very active. She is starting to learn how to nipple, and taking milk from a bottle. <br />
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She has remarkably-unbelievably changed places with her sister Hanna. Ashlyn is now the healthy one, and doing fantastic. Hanna is the new troublemaker.<br />
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The scales have tipped in Ashlyn's favor now, and perhaps she should be renamed the "senior partner". <br />
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Unreal.<br />
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The photos are from the March of Dimes walk we did last weekend. Sara raised around $1200 from the walk for the March of Dimes, and we had a great crew of neighbors and journey school folks who supported us. Special thanks to Cindy who made "tiny mights" shirts for everyone...It was a great event, and as always, we appreciate the support.<br />
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So, we are back to the prayer wheel. Please send prayers to Hanna and tell her to close her PDA.<br />
<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-66462984347532045032012-04-26T20:41:00.002-07:002012-04-26T20:41:48.878-07:00Day 50 -Mile 22Today represents a milestone day in the NICU...Day 50. <br />
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Its hard to believe really; Hard to believe the girls are nearing 2 months old and have not moved from the same room about 20 yards down the hall from where they were delivered. Hard to believe that we have been coming down here every day for 50 days; Hard to believe that after all we have been through there is light at the end of the tunnel. <br />
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If this was a marathon, we would be around mile 22 now; You've pushed through the "wall" at mile 18, and you know you're going to make it to the finish. Only 4.2 miles to go.....however, you're exhausted; your legs hurt and feel heavy; your mentally drained and time gets very slow. Every mile feels like an eternity. <br />
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You begin to feel the emotional joy of knowing you're going to make it to the finish line, but know that you still have some tough miles to go. There still may be some unexpected setbacks; You might get a cramp, a muscle tweak, or you might overheat and have to slow down. You want so desperately to beat your PR (personal record) time, and know you'll have to push hard and keep pace from here to make it happen.<br />
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That's pretty much where we are: Tired of coming down here every day; Eager to get the girls home, and hopeful that we don't get any further setbacks.<br />
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Today's news is good.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNDjrO4QWBjeHrPGq7k-gFdfZ8GsV-A14rUP99juRPjnGziXDSVgE9W8iLG1iQwaBwJoyxzSvJDVkDzXy5ned3wyfymhCcN1km83ZeClIvkl0INxZ38lAOlv8YN006PX4erpKgtdz4gA43/s1600/Hanna+arms+up.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNDjrO4QWBjeHrPGq7k-gFdfZ8GsV-A14rUP99juRPjnGziXDSVgE9W8iLG1iQwaBwJoyxzSvJDVkDzXy5ned3wyfymhCcN1km83ZeClIvkl0INxZ38lAOlv8YN006PX4erpKgtdz4gA43/s320/Hanna+arms+up.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanna's touchdown pose</td></tr>
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<strong>Hanna: </strong><br />
Feeding and growing...Hanna is weighing in at 5 lbs 5oz now, and is looking very good. She is holding her oxygen level well on a very low cannula, and is regulating her temperature perfectly as well. <br />
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She is pounding down 45 cc's of mom's breast milk every 3 hours.....Sara is teaching her how to suck on the boob, and she is learning. She has sporadic episodes where she can put together the skill set necessary to breastfeed (suck, swallow, breathe)....but still gets tired doing it and then falls back asleep. She still has some work to do here. <br />
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Both girls have 3 requirements to go home are:<br />
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<li>Be able to breastfeed and/or bottle feed</li>
<li>Pass a "room air test"- Have no oxygen for 45 minutes and have good Oxygen levels</li>
<li>Have no "A's or B's" for 5 days-These are the apnea or brachacardyria episodes we've become accustomed to-breathing slows and stops, heart rate goes way down, lights flash, warning beeps start dinging, and then she "wakes up" and goes back to normal. </li>
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<tr><td class="tr-caption" style="text-align: center;">Both girls in cribs w/ Mom</td></tr>
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Hanna has some work to do on #1- She's in training for Suck, swallow, breathe......</div>
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Right now she has #2 done....she can breathe fine with no O2 for 5-10 minutes, likely longer. </div>
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She is close on #3....She's only has a few "episodes" over the last 4 days and they seem to get more infrequent.</div>
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Beyond that, her PDA is still large, but still very "asymptomatic"....No action required. Still hoping it closes on its own over time, and getting more comfortable with the likelihood that she is coming home with it.</div>
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So, all in all, Hanna is doing <strong><u>GREAT</u> </strong>and has a road map to GET OUT OF THE NICU AND COME HOME!!!!!! YES! <strong><u>The Nurses are saying its likely she is coming home in 10-14 days!!!</u></strong></div>
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<strong>Ashlyn:</strong><br />
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<tr><td class="tr-caption" style="text-align: center;">Hi Ashlyn!</td></tr>
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The big news today is that she is out of her isolette! Yep, after 50 days in an incubator, she is finally out in a "mini" crib like Hanna, and looks the best I have seen her. <br />
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She's weighing in at 4lbs! <br />
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More goods news: She has started to be weened off her enfaport milk and is transitioning to "real" breastmilk in stages this week. Today we are moving from 75% enfaport/25% breastmilk, to a 50-50 concoction.<br />
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You will recall the reason for the enfaport was her Chylothorax. Babies with this serious issue are given low fat milk called enfaport so as not to aggravate the condition for 6 weeks. This is her 8th week of life, and thus they have started to introduce the real stuff. So far, she seems to be tolerating it fine, and fingers are crossed that she will continue to react well to "real" breastmilk. <br />
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Even more good news: They are moving her to a low flow nasal Cannula today! Remarkable, considering she was intubated after her surgery just a few weeks ago. This means she will be on the same oxygen levels as Hanna, very low....This further suggests that her lung issues may be healing and, and she's on a great, upward trajectory. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV0lTa0MaSHUAgHDGnomYiKGuaAdvV6kf5steSWhd3HNrt4D4d8CJxuOk4MBT5TCtOC9WQPMeLYUIOr-iZgSlFSFWadTWAOqMkqgXgj0R0yFjKygGuXq3DaXyIA6Wy7wCSyMvBOcaM1Q-u/s1600/Ashlyn+Mouthful.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV0lTa0MaSHUAgHDGnomYiKGuaAdvV6kf5steSWhd3HNrt4D4d8CJxuOk4MBT5TCtOC9WQPMeLYUIOr-iZgSlFSFWadTWAOqMkqgXgj0R0yFjKygGuXq3DaXyIA6Wy7wCSyMvBOcaM1Q-u/s320/Ashlyn+Mouthful.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn with a mouthful of Boob!</td></tr>
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Sara reports that Ashlyn is learning how to breastfeed FASTER than Hanna, and who knows; Maybe she'll just leap past her and hit the accelerator pedal to growth. She is VERY alert most of the time we are around now<br />
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All in all, Ashlyn is doing great!<br />
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Sara and I are walking for the March of Dimes on Saturday in Broomfield. We have a "Tiny Mights" team of friends, neighbors, and school folks joining us. Sara has raised over $1000 and the Journey School has hit $10,000....Most of the NICU nurses and staff are walking as well, but they are going to be at a separate location in Denver's city park. We will be wearing our tiny mights gear, capes, and all very proud...Pictures to come.<br />
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Thanks for the good wishes, prayers, thoughts, and good vibes....The girls are feeling the love!<br />
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-9195981930967021892012-04-21T21:15:00.000-07:002012-04-21T21:15:37.907-07:00Feeding & GrowingThings in the NICU continue to roll along-Most of the news is good. <br />
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Its been almost a full week since the last update, and perhaps surprisingly, there is not alot to report. No news is good news. <br />
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I was able to catch the morning "rounds" on Saturday, and it lasted no more than about 3 minutes. Apparently, there is not much to say....A far cry from just a few short weeks ago, when there would be a 20 minute de-brief on the various ailments that the girls, particularly Ashlyn, were facing.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Y096P4GJAb6MFcdoP-4Dm28elDO9vwuLDAMkYlvyfZzoqT-njQCIDmQfwaFijy_1wKO2WpdU5ozwFGjs1H31JUO0igjH1oCwXPG8aeEJxlbuVr5el0ceHtrlpBZfB5BUHCvyOiqZNDXY/s1600/Ashlyn+bink.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="239" qda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Y096P4GJAb6MFcdoP-4Dm28elDO9vwuLDAMkYlvyfZzoqT-njQCIDmQfwaFijy_1wKO2WpdU5ozwFGjs1H31JUO0igjH1oCwXPG8aeEJxlbuVr5el0ceHtrlpBZfB5BUHCvyOiqZNDXY/s320/Ashlyn+bink.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn with Bink</td></tr>
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Here is where we stand:</div>
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<strong>Ashlyn: </strong></div>
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn bath</td></tr>
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She is starting to look pretty good! She had her first bath a few days ago, and is very alert many times when we are there. She is on high flow oxygen at 1.5 lites, which is a nice downgrade from her Cpap machine. She is weighing in at 3lbs and 11oz and is just starting to enter the "feeder and grower" stage. </div>
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The plan is to introduce "real" breast milk on Monday-She has been on Enfaport (a synthetic breast milk substitute) for around 30 days now, because of the risks of her Chlothorax. The hope is that the Chlothorax has healed itself by now, and that introducing "real" breastmilk won't aggravate anything. </div>
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Other than that she is looking good! </div>
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<tr><td class="tr-caption" style="text-align: center;">Dad & Hanna</td></tr>
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<strong>Hanna:</strong></div>
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Hanna is growing fast.....She's up to 4lbs 14oz, and should be cresting 5lbs this weekend! She really looks like a "real" baby now.....She is sucking on mom's boob intermittently, and is still practicing this craft. This is one of the key skills she needs to learn to be able to go home.....She's getting there!</div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna</td></tr>
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Her PDA murmur is still "loud", but she remains "asymptomatic" so no action. The hope continues that it will close on its own over the next month or two....Since it's not causing her any distress, no one is really concerned. It lingers on my mind however, as I know its going to have to be closed-either by her or by medical intervention.</div>
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For some kids where it doesn't close on its own, they can do a less invasive "angioplasty" type surgery where they stick a coil into the duct to block it. Its usually done before 1 year of age...Hoping and praying that we don't have to go there.<br />
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All in all, things are good in the NICU...we are starting consider when we might be taking our girls home.The girls were born 44 days ago and have lived their entire little life's Hanna will likely come home first, and I'm guessing we are still 2-3 weeks out...Ashlyn is probably a week or two behind that. Cant wait!<br />
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<tr><td class="tr-caption" style="text-align: center;">The whole family!</td></tr>
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com3tag:blogger.com,1999:blog-5502181350400401263.post-39267323751043217692012-04-15T11:51:00.000-07:002012-04-15T12:59:09.803-07:00Day 38 Momentum<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
The hockey playoffs are here, and there is little better than watching your team win incredibly exciting playoff games. </div>
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<tr><td class="tr-caption" style="text-align: center;">Blackhawks</td></tr>
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The Chicago Blackhawks are my team; My dad started taking me to games when I wasn't much older than Rylan is. I fondly recall Sunday nights back in Chicago growing up; Heading down to greektown for dinner (with bread and saganaki flaming cheese), driving west over to the old Chicago Stadium; My dad paying the local black kids on the corner to "watch" our car during the game; Then later bribing the parking lot guys for "EZ out" parking.... <br />
The stadium really used to rock....The singing of the national anthem produced an absolutely deafening roar, which at times was the highlight of the whole game. Sitting in the mezzanine directly under the 2nd level, we usually sat in the "beer zone" seats, where the drunks upstairs would spill their beers and shower us down on the main floor. <br />
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I saw alot of games at that old barn, and grew to love hockey. Hockey is an interesting sport...Some of it is about skill; But equally important is hard work, momentum and confidence, combined with a little luck. Games where one team is dominating can change so quickly; the other team can score a quick goal or two, and the whole complexion of the game can turn on a dime. The momentum can carry throughout individual games or series of games, and the difference between winning and losing can be nothing more than a bounce of the puck. <br />
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The girls in the NICU are clearly gaining some momentum. Hanna is currently the team MVP, while Ashlyn is a "role" player trying to catch up to her all-star sister. Things have improved dramatically since last week, and are accelerating in a very positive direction. It looks like the Hayes girls are players after all.....<br />
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<strong>Hanna:</strong><br />
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Is rocking; She is really porking up, and gaining weight very consistently. She is putting on nearly 2 ounces a day, and is weighing in today at 4 lbs 7 oz. She really looks like a "real" baby now; She's got some fat on her legs, her head has really grown big from where she was.<br />
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She is OUT of her isolette incubator, and is just lying in a "mini" crib now...She wears a cute pink hat, and is learning to suck on mom's boob. She has daily "boob" sessions now, and is learning her new trade slowly but surely....<br />
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<tr><td class="tr-caption" style="text-align: center;">Sara holding both girls for the first time!</td></tr>
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The reality that she is transitioning to mom's boob for her feedings, brings a new reality check....Mom needs to be at the NICU <u>all the time</u>, and Hanna is going to be coming home at some point in the not so distant future. I'm guessing she is still 2-3 weeks out; However her momentum is strong and at the rate she is growing and progressing, it could be sooner. </div>
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Her PDA "murmur" is reporting to be getting "louder", which may be a good thing. We know she has it, and despite being "asymptomatic", it remains a concern. The louder nature of it may mean that's its trying to close. Time will tell.</div>
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All in all, she is the team MVP....</div>
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<strong>Ashlyn:</strong><br />
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The junior partner is improving; She has faced some serious challenges, and as such, it comes as no surprise that she is behind in her development from her sister. <br />
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn's staples...ouch</td></tr>
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She is weighing in at 3lb 6 OZ, and seems to taking her enfaport feeds well. She remains on enfaport rather than mom's milk as a precaution; We believe that her Chlylothorax situation has resolved itself, but will still wait another week or two to introduce "real" breast milk.</div>
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Her CPAP oxygen needs seem to be reducing, and this they are going to try and pull the CPAP this week. She will transition to a high flow nasal cannula. </div>
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Also, I watched today as they pulled her staples out of her side, where the PDA surgery incision is. It was hard to watch as the staples were WAY in there, and they pulled them using a clamp thing-she winced as every one came out, and there were about 12......But its over, and she is now staple free with a nice scar across her side. They say as the skin grows over time, that the scar will actually "move" around to her back....She'll still look great in a bikini, although I'm not sure I would approve of her in a bikini anyway....</div>
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<tr><td class="tr-caption" style="text-align: center;">Staples coming out</td></tr>
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Even better, she is almost tube free! She still has her feeding tube down her throat, but has NO IV's and no other lines!!!!!! YAY!!!</div>
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All in all she is improving....She is still small, but getting her staples out and having her oxygen needs diminish, as well as being tube free means she is starting to play in the big leagues now. Go girl!<br />
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<tr><td class="tr-caption" style="text-align: center;">Rylan meets his sisters</td></tr>
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The NICU lifted the "cold and flu" season restrictions which meant that Rylan got to come meet his sisters for the first time yesterday. At home he often says "sisters" and "eyer" which means elevator. </div>
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You see, he know how to get to the hospital; He gets in the "car", the doors "open and close", he goes on the "eyer", to see his "sisters"......He knows his sisters names now and can say "Ashlyn" and "Hanna" very well. </div>
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Upon first introduction, he stared at Hanna for a good 3-4 minutes...He wasn't quite sure at first, but then figured out it was "Hanna" and starting pointing and waving...so cute.<br />
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<tr><td class="tr-caption" style="text-align: center;">Holding hands...</td></tr>
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Also, Sara got to hold both girls TOGETHER for the first few times this weekend. Its a really cute sight to see, let me tell you. </div>
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Just like in the womb, the girls nestled nearly skin to skin seems to make them very calm and happy.....Mom too! </div>
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The girls decided they liked it so much, they wanted to hold hands......So adorable!</div>
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I'm away on business this week...next update on Friday.<br />
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GO TINY MIGHTS!<br />
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-74410794962285285482012-04-11T21:39:00.000-07:002012-04-11T21:39:34.113-07:00Through the wall and around the corner <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Cary holding Hanna</td></tr>
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Many of you know that I enjoy running. From 10k's, marathons, and even 50 mile ultra's, running is great exercise and really calms the mind.</div>
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If you have ever run a marathon, then you know about "the wall"; Somewhere between miles 17-20, after you've been out there for awhile, your legs start to tire, as does your mind, and you hit it. That's when the real suffering begins; your legs say I don't feel like doing this anymore, despite what your brain says. You start having doubts, despite how hard you've trained. Time slows down, and you wonder why you're putting yourself through this ordeal.</div>
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On a good day, you can run through the wall, and after suffering for a few miles, you can get past it and finish strong. <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;">Hanna</td></tr>
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Today at the NICU, we ran right through the wall...... and finally turned the corner.....</div>
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The race is far from over, but we got some very positive news and it feels like there light at the end of the tunnel. It was a milestone type of day, where everything seems to trending positively and we actually may take home 2 healthy girls!!!!!!!!</div>
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It was one of the best days we have had in the NICU since we started this journey!<br />
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<strong>Hanna:</strong></div>
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Hanna crossed a big threshold today as she crossed the 4 LB mark! 4lbs and 1 oz....She is gaining very steadily now, around 1.5 to 2 oz a day.....She is really to starting to look like a "real" baby, instead of a preemie...She's filling out, her head is growing alot, and she is putting a little fat on her once scrawny legs. All good. </div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna eyes open</td></tr>
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She has entered the "feeder/grower" stage now, and just needs to concentrate on growing and learning how to suck on mom's boob. Once she can figure out how to suck, she can likely think about coming home....Probably still 3 weeks away or so, but the reality that it might actually happen hit today. Awesome.</div>
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The only bad news we got is that her previously seen brain bleed has not completely resolved but is "resolving". They said its small anyway, and is nothing to be concerned about. A few weeks ago I would probably be freaking out over something like this, but they seem clear that its not bad. So, I'm not worrying about it.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJCKMFUEd-RrNXcf4-etKPKSrYiWu8SV2LoL55YeMLlBRoYXPxzvLNxOoIWQqHwOaKqBhKnRLGpoIRZvPaT__z_fC0P7SVWzqy0NLqeUVg7TCCB6DXDWVLASySQBPKKar4olBOrR_lc_DP/s1600/Ash.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" qda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJCKMFUEd-RrNXcf4-etKPKSrYiWu8SV2LoL55YeMLlBRoYXPxzvLNxOoIWQqHwOaKqBhKnRLGpoIRZvPaT__z_fC0P7SVWzqy0NLqeUVg7TCCB6DXDWVLASySQBPKKar4olBOrR_lc_DP/s320/Ash.JPG" width="240" /></a><strong>Ashlyn:</strong></div>
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The real good news.....She is was extubated 2 days ago, and is back on her C-PAP "rhinoceros" air. Her lungs seem to be clearing, and her oxygen requirements are going down. Her possible infection never materialized, and they are going to finish out the anti-biotic treatment for the next 2 days and then be done. They are increasing her feeds slowly, and going to be removing her surgery staples late this week.</div>
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More importantly, she looks GOOD. She had her eyes open today, and seemed alert and responsive. Poor girl has been on Fentanyl, a heavy barbituarte for pain, on and off for most of her young 34 day life. Its good she is off it, hopefully for good. She's awake, and looking around. She is noticeably smaller than her sister, but hopefully she can catch up.</div>
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All in all, a great today and we are filled with alot of hope. Hope that the girls will OK, and hope that one day we will bring the ladies home. Day 34 in the NICU was good!</div>
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-27569480608928723752012-04-08T14:45:00.000-07:002012-04-08T14:45:51.930-07:00Easter Capes <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivOilX65KsTGEYMUUIJPWrmAxKWp_SqK-Bj0C5Ju-61o9_sR0hyphenhyphenhhnV-mXMVuSymPKZZWgTQi9tBRljOcywT84NGG7pLUo4zFR7-HUcwh2JfP-o7OB3HGKBf6-e1JenAQYjJGcgqq7TDUo/s1600/Rylan+easter+eggs.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivOilX65KsTGEYMUUIJPWrmAxKWp_SqK-Bj0C5Ju-61o9_sR0hyphenhyphenhhnV-mXMVuSymPKZZWgTQi9tBRljOcywT84NGG7pLUo4zFR7-HUcwh2JfP-o7OB3HGKBf6-e1JenAQYjJGcgqq7TDUo/s320/Rylan+easter+eggs.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rylan Egg Hunting</td></tr>
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It's Easter today, and Rylan has been really having a ball....He had no less than 4 Easter egg hunts, and has discovered chocolate for the first time. He was running all over the parks looking for Easter eggs and generally having a blast.</div>
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We found him him yesterday, after he had strayed off a little, with a chocolate face that looked like Augustus Gloop from Willy Wonka...Upon further inspection, he had bits of tin foil wrap in his mouth, so we knew he had found some chocolate and devoured it, wrapping and all. Hilarious.</div>
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This week we received a wonderful gift from my work crew at REC Solar. A UPS box arrived on Friday, and low and behold; a nice signed card from a group of REC friends/colleagues, and Tiny Mights Capes. That's right...Capes.</div>
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<tr><td class="tr-caption" style="text-align: center;">TM!</td></tr>
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Sara had drawn the "Tiny Might's" a few weeks ago, and its become a hit....The twins dressed up as superhero girls, wearing their TM capes.....</div>
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<tr><td class="tr-caption" style="text-align: center;">TM Capes Front</td></tr>
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Apparently one of the REC Solar crew, one Matthew Woods, had taken the drawing and sent it to a friend who is a seamstress in Redondo Beach, CA....She replicated Sara's drawing to perfection, and voila! We have the TM capes!</div>
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I can't wait till the girls get older and don their capes for Halloween....They will need to be continued superheroes to get out of the NICU, with full wonder twin powers activating! Now they have their capes to take them on their way......Awesome! Thank you to the REC team for such a heartwarming gift....Lots of smiles created now and in the future!</div>
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<tr><td class="tr-caption" style="text-align: center;">TM Capes Back</td></tr>
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Easter has brought some better news from NICU. </div>
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<strong>Ashlyn:</strong></div>
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As a recap: Ashlyn had PDA surgery last Tuesday afternoon, and her recovery was pretty rough. There were some very dark moments on Wednesday, Thursday and Friday. Last I wrote, she was very sick and in trouble. </div>
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The better news today is that she may turned the corner for the better. Her O2 requirements have decreased, and although still on a breathing tube, she is stable. They are even talking about extubation tomorrow, which is good. Her xrays and looking a bit better, so her potential fluid in the lungs is small. There are still treating her for an infection, although they don't seem to be able to verify that she has one. This is also very good news.</div>
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All in all, good news-especially from where we were a few nights ago, which was fearing the worst. If she can get extubated tomorrow, and back on the CPAP things will be moving back in the right direction. <br />
<strong>Hanna:</strong><br />
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Growing! She's weighing in now at 3 lb and 13oz, so nearing the important 4 lb mark. They have increased her feeds, and she continues to grow. Most of the news is good.<br />
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Her problem, as identified last week by her first ever echocardiagram (echo), is her PDA.....We now know its there, and she still has a loud murmur. Nothing to be done about now, as her condition is known as an "asymptomatic PDA", in which she isn't showing distress. She is actually doing great!<br />
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However, one way or another, her PDA duct is going to have to close. She is either going to be able to do it on her own, which may take weeks/months...perhaps even a few years. Or, she is going to have to have some sort of surgery to close it. The doctors say they there is a less invasive surgery than Ashlyn had, that places a "coil" in the PDA duct to block it, that kids can have when they are 6 months- 2 years old. She may be a candidate for if her duct does not close on its own. We'll keep our fingers crossed that she stays "asymptomatic", and that that damn duct closes on its own....CLOSE DUCT CLOSE!<br />
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Sara is trying to get her to nipple a bit during the "care times", and Hanna has even suckled a little here and there. <br />
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Happy Easter to everyone-Thanks for all the love and support.<br />
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com0tag:blogger.com,1999:blog-5502181350400401263.post-45067968462759812762012-04-05T11:26:00.001-07:002012-04-05T11:26:10.053-07:001 month & no repreiveIts been exactly 1 month that the girls have been here. Born Thursday March 8th...Therefore their "chronological age" is 1 month, but their In "adjusted" age terms, they are still 0...not even born. "Real" age vs "adjusted age" is a very interesting concept. Here is the definition from the March of Dimes website:<br />
<br />
<em>The premature infant: How old is my baby?</em><br />
<div id="contentstylebaby">
<em>Babies who are born prematurely often have two ages: </em><br />
<ul>
<li><em>Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is. </em></li>
<li><em>Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months. </em></li>
</ul>
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Their original due date was May 24th.....a long 7 weeks from now. Therefore, despite being a month old, they still are are -7 weeks "adjusted".....<br />
<br />
Sara stayed home today, as she has down down with my cold/strep; She is not pleased to away from the girls, but knows its not good to be in the NICU with a potential sickness. I made it down to catch the tail end of the rounds for Ashlyn and Hanna.<br />
<br />
The news in the NICU is not particularly good, which is a nice way of saying that its bad. We'll drop right in:<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb8Cc-Zi8J78WazRWskQejnmJGcR4FBF2_H367L6b3JwUvhcaohP1OSFBwfDX-_rFj4V88GJkjE8I2iqrm4VbArBcY_TeCAEBxvKXiXsddP30zM_TQfCf1PpNJklbTxqnVCQKTFazhLS1_/s1600/ash+under+the+gun.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb8Cc-Zi8J78WazRWskQejnmJGcR4FBF2_H367L6b3JwUvhcaohP1OSFBwfDX-_rFj4V88GJkjE8I2iqrm4VbArBcY_TeCAEBxvKXiXsddP30zM_TQfCf1PpNJklbTxqnVCQKTFazhLS1_/s400/ash+under+the+gun.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn hammered on 6 meds</td></tr>
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<strong>Ashlyn: </strong></div>
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Is having problems......The surgery on Tuesday went well, and her recovery was looking good until last night. Apparently overnight, she started deteriorating, and is now facing some serious new challenges in her recovery from her PDA surgery. <br />
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She had some unfavorable xrays this morning which show fluid accumulating in her lungs...The thought is that this is from an <u>infection</u>. Bad bad bad......They are starting anti-biotics now as a precaution, and are expecting test results back within an hour or two. <br />
<br />
Further analysis this morning indicates a very high CPG reading (not sure what that even means) of around 5.8 with a "normal" range of 0-1....off the charts. <br />
<br />
The doctor's initially hypothesis is that she has some sort of bronchial infection, maybe pneumonia. I asked if it could be from me or Sara and she likely not; Anytime they re-introduce a breathing tube, the risk of infection is fairly high. As a classic doctor she says "the good news is an infection is fully treatable." <br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1XT3OQquJ8PpKMEGmQghNeyD7xHmqZ42AZ_7XNFmYr9dl0koe0Jc9ZX6cp2awBUOPyKUhWx5csjq0amCQ3aHhNz-G71AdREZYN9LiGk-uuYVZD_YTFtkw1jDn1vG8IDJNPIhVoQfRkLru/s1600/Ash+bad+screen.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1XT3OQquJ8PpKMEGmQghNeyD7xHmqZ42AZ_7XNFmYr9dl0koe0Jc9ZX6cp2awBUOPyKUhWx5csjq0amCQ3aHhNz-G71AdREZYN9LiGk-uuYVZD_YTFtkw1jDn1vG8IDJNPIhVoQfRkLru/s320/Ash+bad+screen.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn-Bad O2 of 39 and high BP</td></tr>
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If the fluid continues to accumulate, they are talking about re-introducing a chest tube. <br />
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Poor girl is getting so hammered.....She is getting several blood draws done every few hours, and looks very unhappy. They have increased her Fentanyl and is on about 6 meds at this point. It feels like the poor thing is a human lab experiment. Its really hard to see.<br />
<br />
<strong><u>Bottom line:</u></strong> She's sick, alot sicker than she was yesterday and in critical condition; Once again she's fighting for her life. <br />
<br />
The level of attention she is getting and the looks on the faces of the doctors that are treating her tell the story. She was in a similarly precarious spot a few weeks ago, related to her chylothorax. Now she's in the same spot, with new issues. If she makes it out of the NICU it will be a miracle.<br />
<br />
<strong>Hanna:</strong><br />
<br />
Our rockstar finally got some bad news....I figured it was only a matter of time; <br />
<br />
Her echo revealed a "moderate to severe" PDA.....<br />
<br />
No surprise really; We knew she had a "loud" murmur, and knew that since she is an identical twin and that her sister Ashlyn had one, that this was a distinct possibility. However, it still sucks. <br />
<br />
She is not showing any distress, and actually, is doing really well. She is actually is growing like a weed and all the way to 3 1/2 lbs now! Everything she is doing is good.<br />
<br />
It's one of those "too much information" moments. Since she is growing so well, and all her stats look great, no one is eager to do anything about the PDA. Around 80% of PDA's close on their own; It might take weeks, months even a few years; I talked with my buddy Tim today, who told me his son had a PDA and it eventually closed. It took almost 2 years. <br />
<br />
Not much else to say on Hanna. It sucks to hear that she has a big PDA. It's good to see that she continues to well. <br />
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That's it for today...will update as events warrant over the next day or two. <br />
<br />
For now all, as my friend Becca says, all we can do "wait and see". <br />
<br />
Please continue to send your thought and prayers for our little girls, particularly Ashlyn. Thanks for all the support.<br />
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com4tag:blogger.com,1999:blog-5502181350400401263.post-16368646717068811082012-04-03T18:56:00.000-07:002012-04-03T18:56:15.788-07:00Ashlyn had her PDA surgery-she is OK <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHOPJ9IjCT9fFi-6OFvzqi-Xz297fE1ho2M4-yqswwhX4OUzZQFBhf2SlQflcOTGMAn_ki6iTPVOHxm76_j_MCaZpwZwvxZJteX58Q4MAOzqyGdvLwzYNsY5jRV4IexNFksm7lSAxiKh_e/s1600/Ashlyn+before+surgery.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dea="true" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHOPJ9IjCT9fFi-6OFvzqi-Xz297fE1ho2M4-yqswwhX4OUzZQFBhf2SlQflcOTGMAn_ki6iTPVOHxm76_j_MCaZpwZwvxZJteX58Q4MAOzqyGdvLwzYNsY5jRV4IexNFksm7lSAxiKh_e/s320/Ashlyn+before+surgery.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn reintubated right before surgery</td></tr>
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Another crazy day in the NICU.....Ashlyn had her PDA surgery today at around 3:15pm MST. </div>
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Sara called and said she needed some moral support. I knew I wasn't going to be allowed into the NICU (due to my strep throat), but I knew Sara needed me down there. I arrived and Sara came out of the NICU doors in tears; She was saying she had to sign all these consent forms, and that she had watched the doctors get Ashlyn ready for surgery. In some ways, I'm glad I wasn't in there.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbkrCGje_0SxEz2qveBB86iQPxuwkZCjFvGhWXkHAqW8rPlcjY7YKNQNVlACb91xl-k1G8SAf6dtviGdZDeou5G8HBmbQcabPDGfNOgHji9IH5Y2p4apO914YiqTB6As52KFHDpqEA8od3/s1600/Ash+before+surgery.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dea="true" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbkrCGje_0SxEz2qveBB86iQPxuwkZCjFvGhWXkHAqW8rPlcjY7YKNQNVlACb91xl-k1G8SAf6dtviGdZDeou5G8HBmbQcabPDGfNOgHji9IH5Y2p4apO914YiqTB6As52KFHDpqEA8od3/s400/Ash+before+surgery.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashlyn not happy about going into surgery</td></tr>
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I waited in a "parents room" while the surgery happened; Sara was inside the NICU and sat near Hanna. The surgery only lasted about 25 minutes, which is pretty amazing.The doctors came out and found me in the room and delivered the surgical report.<br />
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The surgeon, Dr David Fullerton is an old pro. 31 years in practice and he has won numerous awards etc.....its good that we got one of the best docs. Her surgery went well. The doctor tied off her PDA duct and it said it was "the largest duct opening I have seen in 30 years of doing this". I'll give Ashlyn a medal when she's older for having one of the largest PDA's in history. Unreal.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLiAa1ps37Ru7ihH33oRir70Gk1qHKbG6FR1ZdWxOIrQD27QvHU1_9CjwZ1EfZx0lTKlFTg7L3ax0TAG6-TNDhTiuHupLEVHOlu0QPVWpw4SmR_7j59aZ2MQk0b0iQDi2_5r_pLYRe_9Ef/s1600/surgery.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dea="true" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLiAa1ps37Ru7ihH33oRir70Gk1qHKbG6FR1ZdWxOIrQD27QvHU1_9CjwZ1EfZx0lTKlFTg7L3ax0TAG6-TNDhTiuHupLEVHOlu0QPVWpw4SmR_7j59aZ2MQk0b0iQDi2_5r_pLYRe_9Ef/s320/surgery.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Blurry surgery shot</td></tr>
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He also said he is slightly concerned she may have an aortic coarctation, which may restrict blood flow to the emtremities. He said they were not too worried about it, but something he noticed while he was in there. As I have learned, any time they start talking about something, there is a reason behind it. I'll do some homework on that later. <br />
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The most unusual part of the whole experience, is what the nurses and Sara reported about Hanna's behavior during Ashlyn's the surgery. Apparently, Hanna became very agitated when they took Ashlyn out of "their" room for the surgery. During the surgery, Hanna was very restless and upset; she started triggering her alarms, had a bunch of desats in a row, and was twisting and turning and uncomfortable. After the surgery ended, Hanna relaxed and went right back to sleep, like she normally does.</div>
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They say that "mirror" twins like these two girls can "feel" things about their twin, and it seems that it might actually be true. We had heard about unusual phenomenon like this, and this may be our first "strange twin" moment. Very interesting. </div>
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Subsequently, they took an echo (echocardiogram) and an xray and are initially very pleased by the results immediately after the surgery. As you can see below; <u>The picture on the right is before surgery</u>. Note the very large heart size, the white cloudy look of the lungs (which means poor air intake/uptake). </div>
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<u>The picture on the left is about 15 minutes after surgery</u>. You can see the staples in her side, where the incision was. Her heart is noticeably smaller (working less hard), the lungs have re inflated (as evidenced by the darker lung picture). First look reveals a big improvement!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXG0Ku4lbNR7jHIcS6yiwBgoYZX7vZRUKmqAe9F7MIu_Q730Sm215nyTlD6QhPK6qgm6eGkb8HAmXRjflXIyrvRJ06qfEg86DhunXwHqN6ZLbeyPYEFzBaaNVETHsnmk3-qAXnFO9dfGpe/s1600/before+and+after.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dea="true" height="476" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXG0Ku4lbNR7jHIcS6yiwBgoYZX7vZRUKmqAe9F7MIu_Q730Sm215nyTlD6QhPK6qgm6eGkb8HAmXRjflXIyrvRJ06qfEg86DhunXwHqN6ZLbeyPYEFzBaaNVETHsnmk3-qAXnFO9dfGpe/s640/before+and+after.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before on right, after on left-note staples</td></tr>
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The next 24-48 hours are once again critical. She is listed in "critcal" condition in the NICU, as the first 24 hours after heart surgery for ANYONE, much less a 2.75lb, 3 week old baby is sketchy. Please keep our little Ashlyn in your thoughts, prayers, in these critical hours over the next day or two. The poor girl has already been through more at 3 weeks than many people go through their entire lives, and she sure deserves to catch a break.Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-27996945503880901752012-04-03T09:50:00.000-07:002012-04-03T09:56:05.236-07:00Unknown Caller-AgainThe Iphone said "unknown caller" again this morning. As a veteran of the NICU, I know what that means. Michael was calling from the NICU to tell us some bad news. <br />
<br />
Ashlyn has been slightly deteriorating over the last 3 days, with her oxygen requirements going slightly up, fluid issues going up, and overall health going down. Not good.<br />
<br />
He was calling this morning to tell us the plan. SURGERY. TODAY. <br />
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He said they want to move forward with the PDA ligation surgery. He termed it as "our hands are pretty much tied, and were running out of options."<br />
<br />
On one hand, we know this surgery is a 20 minute surgery, and the medical side of it is not that complicated. You go in, tie off the duct, and get out.<br />
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On the other hand, the risks are all over the map. Ashlyn will need to be re-intubated, put back on pain medication, and is having heart surgery at age 3.5 weeks of life. Ugh.<br />
<br />
The other risks of this surgery shake out like this:<br />
<ul>
<li>Major surgery risks</li>
<ul>
<li>Bleeding</li>
<li>Infection</li>
</ul>
<li>Vocal Chord paralysis-Doesn't mean she wont be able to talk, but may have a raspy voice</li>
<ul>
<li>5-10% chance...maybe higher.</li>
</ul>
<li>Neurodevelopmental issues</li>
<ul>
<li>Some correlation between PDA surgery and longer term developmental problems</li>
<ul>
<li>Doctors don't really know why</li>
<li>Say that putting small babies under anesthesia might be a contributing factor</li>
<li>They also say that closing the PDA results in a radical hemodynanmic change in the body-resulting in much more blood flow, a "push" of blood if you will. This "push" can be a contributing factor to longer term problems as well.</li>
</ul>
</ul>
</ul>
This is what they will be doing....<br />
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<a href="http://www.youtube.com/watch?v=SOj6K_BoIAc">http://www.youtube.com/watch?v=SOj6K_BoIAc</a><br />
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Even better, I have come down with a strep throat-That's twice in 3 months. If my little niece wasn't so cute I would hold it against her. <br />
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The bad part is that this will prevent me from going to the hospital to be there for my little girl. They wont let me in the NICU being sick, so I'm not going to be there today. Sara is there now.<br />
<br />
So, here we go.....Please send thoughts and prayers. the next 48-72 hours are going to be critical once again.Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-67881857517556695522012-04-01T11:04:00.002-07:002012-04-01T11:04:53.062-07:00Day 23 in the NICU <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxHhHQ-ISix8fLWCCxaOw8n739NfyHLqWXLzchizr2dADQa0Txqz-bSvEnDAlA9hVR-xjolvMDkfm5J7ToM5cHWFby0NRWD7tYvDrdfbth4GTtMllRSJQ3GYcPuM5vc1GXjBeZ-uAKG72Y/s1600/Mom+&+Rylan.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" dea="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxHhHQ-ISix8fLWCCxaOw8n739NfyHLqWXLzchizr2dADQa0Txqz-bSvEnDAlA9hVR-xjolvMDkfm5J7ToM5cHWFby0NRWD7tYvDrdfbth4GTtMllRSJQ3GYcPuM5vc1GXjBeZ-uAKG72Y/s320/Mom+&+Rylan.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom Hayes & Rylan</td></tr>
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Can't believe we have been in the NICU for over 3 weeks now with our little ladies; In some ways it feels like about 3 years. The commute from Boulder down to Aurora we now know all too well. It's 45 minutes from the house, depending on traffic, and all I think I could do this drive in my sleep now.</div>
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Sara's parents left yesterday, and flew home to California. I have to admit, I'm lucky to have some pretty amazing in laws. They are super fun, positive people who really help out. Ann & Tony watched and played with Rylan a ton, in addition to; cooking, cleaning, painting, laundry, handyman projects (Tony is really good), errands, and everything else. The nicest thing about having them around was that we could get up and go to the hospital at any time, because they would watch Rylan. So now, the burden will shift to my parents, who are equally awesome in their help factor. We have amazing parents on both sides.</div>
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I think its pretty rare for your in laws move into your house for a month and that you don't get sick of them. Not to say it wouldn't be nice if they just MOVED out here permanatly and/or split their time between CA and CO (I know you're reading this guys!), but nonetheless, they are pretty awesome and always welcome.</div>
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Some more ups and down in the NICU to report, so here goes:<br />
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Hanna: <br />
<ul>
<li>She continues to be a rockstar....No major issues. Growing now and weighing in around 3 lbs 3 Oz now..Feeds continue to increase. She still has a higher hear rate, but that's old news.</li>
<li>Sara did her first breastfeeding session today with her! The goal was just to get her lips latched onto the boob. However, as the outperformer she is, she even sucked! Pretty unusual for a 32 week old preemie, but a good sign for the future. </li>
</ul>
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn's "Echo"</td></tr>
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Ashlyn: </div>
<ul>
<li>Ahhhhh...The problem child. </li>
<li>Yesterday brought good news, then bad news, then good news, then bad news. That's right, double good-double bad. Such is life on the NICU roller coaster.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Good news: She took her first POOP! Yes, imagine if you had to hold it for 22 days...Yikes! This is great news that the plumbing is working and her feeds are taking.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Bad news: Late yesterday afternoon, Ashlyn started deteriorating...Oxygen requirements increased, heart was enlarged, heart rate was high....The doctors stopped feeds and were thinking the very worst; The chylothorax had returned. They immediately requested an echo (echocardiagram, basically an ultrasound of the heart.)</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We were anxious to hear last night what the Echo showed, but didn't learn anything until today.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We came in this morning to catch the morning rounds and were greeted with another round of good/bad.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">She is <u>not</u> showing effusion in the plural space....AKA they feel fairly confident that she is<u> not</u> showing any sign of a Chylothorax! This is great news, as Chylothorax is potentially deadly.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The bad news: The echo revealed she has a moderate/severe PDA "duct".....Her indomethacin treatments from 2 weeks ago had seemed to close the duct, but it has reopened. Bad. The plan for treatment is a diaretic medication called aldactaside...The hope is some blood thinning will reduce her symptoms and give her time to let the PDA close.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The doctors are saying they would like to give it about a week to see if the duct will close on its own....If not, the only way to really get it closed is surgery. Not fun.</li>
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So in summary: Hanna is good, and Ashlyn's Chylothorax might have closed, but she has a PDA. </div>
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For those who love the details, like me...I'll leave you with some educational reading.</div>
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Next update midweek.</div>
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<tr><td class="tr-caption" style="text-align: center;">Amanda visits the NICU</td></tr>
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<em>What is a Patent Ductus Arteriosus (PDA)?</em></div>
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<b><em>Answer: </em></b><em>Patent ductus arteriosus, or PDA, is a heart condition that is common in premature babies. Babies born very early have a greater risk of patent ductus arteriosus than babies born closer to term; about half of all </em><a href="http://preemies.about.com/od/preemiehealthproblems/f/What-Is-A-Micro-Preemie.htm"><em>micro preemies</em></a><em> have a PDA, about 15% of babies born at 30 weeks have a PDA, and only a small percentage of </em><a href="http://preemies.about.com/od/preemiehealthproblems/a/LatePretermBirth.htm"><em>late preterm babies</em></a><em> have a PDA.</em><br />
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<em>What Causes a Patent Ductus Arteriosus?</em></h3>
<em>Before birth, a baby’s blood is oxygenated by the placenta, not the lungs. Because of this, the circulatory system of a fetus is very different from that of a newborn baby. A small amount of blood goes to the lungs to nourish them, but most of a fetus’s blood bypasses the lungs completely. Instead of going to the lungs, blood flows through the ductus arteriosus (a hole between the pulmonary artery and the aorta) and out to the rest of the body.</em><br />
<em>After birth, the baby begins to breathe and the lungs start to oxygenate the blood. When this happens, the PDA should close, allowing blood to flow freely to the lungs. However, when the ductus arteriosus does not close, deoxygenated blood flows through the PDA, into the aorta, and out to the body instead of going to the lungs to become oxygenated.</em><br />
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<em>What Symptoms does a Patent Ductus Arteriosus Cause?</em></h3>
<em>A heart murmur is usually the first symptom of a PDA. A small PDA may not cause any other symptoms, so it is usually not treated. A larger PDA can cause other symptoms, including:</em><br />
<ul>
<li><em>Low oxygen saturation</em></li>
<li><em>Fast or labored breathing</em></li>
<li><em>Poor feeding</em></li>
<li><em>Bounding (very strong) pulses</em></li>
<li><em>Weight loss</em></li>
<li><em>Lethargy</em></li>
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<em>How is a Patent Ductus Arteriosus Diagnosed?</em></h3>
<em>Doctors and nurses may suspect a PDA when a baby has a heart murmur, especially if the baby is also breathing fast, has bounding pulses, and periods of low oxygen saturation. If a patent ductus arteriosus is suspected, an </em><a href="http://heartdisease.about.com/cs/cardiactests/a/echo.htm"><em>echocardiogram</em></a><em> of the heart will be ordered. Also called a cardiac echo, this painless test is a sonogram of the heart.</em><br />
<h3>
<em>How is a Patent Ductus Arteriosus Treated?</em></h3>
<em>Most small PDAs will close on their own, with no treatment. Unless a baby is having a lot of symptoms from a PDA, doctors will simply monitor the baby closely and wait for the ductus arteriosus to close. A baby may be put on fluid restriction while doctors wait for a PDA to close. This helps reduce the symptoms of a PDA because the heart has less blood to pump and doesn’t have to work as hard.</em><br />
<em>If a PDA is causing a lot of symptoms, then doctors will try to treat it with medication. </em><a href="http://drugsaz.about.com/od/drugs/neoprofen.htm"><em>NeoProfen</em></a><em>, a special form of ibuprofen, is the medication most commonly used to close a PDA. In fact, that’s one reason why moms in their third trimester of pregnancy should stay away from ibuprofen - the fetus needs to have an open ductus! If NeoProfen doesn’t work, doctors may try another medication called </em><a href="http://drugsaz.about.com/od/drugs/indocin.htm"><em>Indocin</em></a><em>.</em><br />
<em>In some cases, surgery may be needed to close a PDA. Called PDA ligation surgery, this is a relatively common surgical procedure that usually has very good results.</em></div>
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-17021922635964135422012-03-27T21:28:00.000-07:002012-03-27T21:39:42.407-07:00Seat belt sign is off...for nowA fairly uneventful last few days since I wrote last, which is a very welcome relief. Not much news is good news. <br />
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After putting the last 2.5 weeks into perspective, I feel like I was riding on an airplane through some nasty weather; Lots of turbulence, scary bumps, a few hair raising dives, and then a recovery.The captain turned the seat belt sign off a few days ago, and I have been up stretching my legs, enjoying flying through the "eye" of the storm. However, the captain just got back on the intercom and reported more potential heavy weather ahead, and to prepare for some turbulence. So, despite still being sunny and blue out the window, I am preparing for some thunderstorms I hope don't come.....<br />
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<tr><td class="tr-caption" style="text-align: center;">Blurry bath</td></tr>
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The doctors did some housecleaning in the NICU and moved Hanna & Ashlyn into their own private little room, which is cozy. Its nice to have them both is the same room, and makes it easier for Lauren (our primary nurse) to keep tabs on the ladies...<br />
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Hanna got her first bath yesterday! Lauren ran some warm water in a little plastic tub, and we gave Hanna a rubdown right in her little isolette. This picture shows some good scale; Despite doing so well and taking to her feedings well, she is still a very small tiny might! She seemed to enjoy it very much, and got all snuggled in and swaddled afterwards. </div>
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Hanna continues to do well and generally be a rock star. She weighed in today at 3, count em, 3 Pounds!!!! She is gaining almost an ounce per day (right on track), and is looking good. Sara commented today "She's starting to look like a real baby!".....</div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna bath rubdown</td></tr>
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She is taking 30CC feeds of Sara's breastmilk every 3 hours, and is pooping nice big green yucky poos. Perfect! I usually try to disappear when it's diaper changing time......</div>
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<strong>Ashlyn</strong> (the problem child as I call her): Doing fairly well. She has all her chest tubes out, and has stabilized from some very dark moments and scary times last week. After her Chylothorax fluid problems, feeds were discontinued as they aggravate the potential fluid output. Over the course of the last 10 days, her fluid has dried up, and she now faces her biggest challenge to date. Reintroducing feeds.</div>
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Since she hasn't really eaten a thing in 10 days, how does she survive? Its a question I have asked several times....They give this fluid called TPN via her "Pick line" IV. Here is the definition:</div>
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<em><b>Definition: </b>TPN, or total parenteral nutrition, is a type of IV fluid that provides total nutrition to someone who cannot take any nourishment by mouth. TPN contains sugars, electrolytes, vitamins, proteins, and fats (called lipids), and can supply all of the nutrients that the body needs. </em><em>Premature babies often receive TPN while their intestines mature. The TPN will be given through an </em><a href="http://preemies.about.com/od/glossary/g/PeripheralIV.htm"><em>IV</em></a><em>, an </em><a href="http://preemies.about.com/od/glossary/g/UmbilicalCath.htm"><em>umbilical catheter</em></a><em>, or a </em><a href="http://preemies.about.com/od/glossary/g/PICCline.htm"><em>PICC line</em></a><em>. When milk feedings are started, the amount of TPN that a baby receives will gradually be tapered down as the milk feedings are increased. </em><br />
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<tr><td class="tr-caption" style="text-align: center;">Hanna big eyes</td></tr>
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So, the TPN keeps her going, but its not enough for her to grow. And its not forcing her to use her intestines to digest anything, which she needs very much to learn how to do. The doctors reintroduced feedings yesterday, and the plan is to increase through the week. They are feeding her with Enfaport, which is a synthetic breast milk make with very little fat, but high in protein, carbs, minerals etc.....They do this because babies suffering from a chylothorax condition do not react well to "natural", high fat breastmilk as it tends to aggravate fluid production. The hope is to start with enfaport for a period of weeks, and then switch down the line to "real" breast milk. As long as that Chylothorax has sealed itself.</div>
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Where this is all going, is a very critical window we are now entering with little Ashlyn. We fought through the first 2 weeks, with several very difficult moments and thoughts she wasn't go to make it. Now she faces her newest challenge. Digest the milk, and not re-develop any fluid related to the chylothorax. <br />
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<tr><td class="tr-caption" style="text-align: center;">Sara w/ our favorite doc Terry</td></tr>
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This might be the most critical time in her young life. She pretty much has to do it. <br />
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Unfortunately, the backup plans are not good to non-existent. I had a long talk one of the doctors today, Michael, who is very bright. I think I caught him at a relaxed moment as he was very candid with me, perhaps more than he had been in the past. He basically said, the Chylothorax "hole" needs to seal itself. If Ashlyn redevelops fluid related to the feedings, this means her Chylothorax has not closed. There are no good treatments were this to occur, that don't have very high risks and very uncertain outcomes.<br />
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Backup plan B is trying a drug called Octerotide. He says they probably wouldn't even do it anyway because its so high risk; It reduces perfusion and restricts blood flow. Might close the hole. But also is very experimental, and slows down growth hormones, pituitary glands, and can have long term effects. But the real answer is they simply don't know. Its only been used on about 30 babies her size and age EVER...in the world. And he's not keen on trying it if we come to that.<br />
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Backup plan C is surgery. However, he says the surgery doesn't solve the problem. The Thoracic duct (in which the hole exists/existed) is the size of 1 piece of hair, and runs down the spinal column. The surgery requires going in there, finding it, and then cutting it off below the hole. This results in the fluid spilling in the stomach area, rather than the chest cavity. This ensures that the fluid does not restrict breathing as there is no fluid there) but simply moves the problem to a different place. The "cut line" would still have to close on its own. He's not keen on that either.<br />
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So, from what I'm hearing, she doesn't have much of a choice. She has to fix this issue on her own, and only she can do it for herself. The next 3-7 days will be critical in determining the outcome.<br />
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Once again, we ask for your help. Ashlyn needs your prayers, support, love, guidance, power, healing, and affirmations. Tell little Ashlyn she CAN DO THIS, and SHE WILL DO THIS. Tell her to close that hole the size of a pinprick on a duct the size of a piece of hair. Tell her she has the will, the power and the means to make this happen. Tell her that you love her and you want to meet her one day. <br />
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And please god; give her your strength and your power. <br />
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Thanks for all the gifts and well wishes from all over the world once again, we are grateful for such wonderful family and friends! Go Ashlyn and GO TINY MIGHTS!<br />
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com3tag:blogger.com,1999:blog-5502181350400401263.post-26992722141044533292012-03-24T21:19:00.002-07:002012-03-24T21:19:38.061-07:00Free At LastThings over the last few days are clearly moving in the right direction, and we are seeing some positive developments. So awesome! While we are nowhere near out of the woods by any stretch, optimism is growing and things are improving.<br />
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We'll get right to it-<br />
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<tr><td class="tr-caption" style="text-align: center;">Sara holding Ashlyn 1st time</td></tr>
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<strong>Ashlyn:</strong> <br />
The big news is little Ashyln is making huge strides in the right direction. Today, her 2nd chest was removed!! After seeing no fluid overnight, the doctors decided to pull the tube.....<br />
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<strong><u><em>FREE AT LAST! </em></u></strong><br />
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This comes with several important ramifications. First, it allows her to sleep on her side and on her tummy (a more natural position for a little preemie, and she seems happier)....Second, and by far the biggest....<br />
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MOM got to hold little Ashlyn today for the first time! She is 16 days old today. Mom was THRILLED and was feeling very good about her sweet little girl for the first time after a 2 week hiatus. She looks like a little rhinoceros with her SI-PAP machine on, and is very cute.<br />
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<tr><td class="tr-caption" style="text-align: center;">Rhinoceros Ashlyn</td></tr>
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The doctors are going to be weening her Fentanyl (her pain medicine) now that she has no chest tubes, and are talking about reintroducing feedings on Monday. Cautiously optimistic that when her feedings are reintroduced, her chylothorax fluids won't restart. <br />
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With all the good news, comes a little bad...She scored low on her Thyroid test, (borderline as the doctors say), and they are starting her on a 4-6 week Thyroid medical treatment. They tell us not to be alarmed, and that many preemies in the NICU have similar readings. The hope is that the Thyroid hormone comes back to normal levels and that the treatment can be discontinued down the road.<br />
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Given where we have been and how far we have come, I'm not going to worry about this Thyroid issue.<br />
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All in all, we are very pleased with Ashlyn's progress!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-JkIViLIeN4S__TTaBhkYtsyWVQCf-jXfzMgfPmEqXZ-FgKcbvo5j8jm_pEafDxxEqywgZAVVwOiy6Z7NmTwpCwk3_qygv6GoJ1orArMLnIGGG6YzliLjiCCWLpnXak3xUWMoqTRlY7a/s1600/Cary+&+hanna.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-JkIViLIeN4S__TTaBhkYtsyWVQCf-jXfzMgfPmEqXZ-FgKcbvo5j8jm_pEafDxxEqywgZAVVwOiy6Z7NmTwpCwk3_qygv6GoJ1orArMLnIGGG6YzliLjiCCWLpnXak3xUWMoqTRlY7a/s320/Cary+&+hanna.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;">Daddy & Hanna</td></tr>
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<strong>Hanna:</strong></div>
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Hanna continues to do good things, and is trending well. The big news with her; After some heavy pressure from Sara and especially from the nurses, I held Hanna. It wasn't that I didnt want to hold her, but I was waiting for Mom to get her fill....</div>
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It was really great! She's a little squirrel, and fell right asleep on me after a few minutes. She slept on my chest for about an hour which was nice bonding time. Her heart slowed down nicely when she was on me. She is up to full feeds now, and everything is looking pretty good with her. </div>
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<tr><td class="tr-caption" style="text-align: center;">Julia</td></tr>
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We got a new "resident" who is in charge of our girls for the next month...Her name is Julia, and she is a bright girl from Portland. She explained the girls situation to us today, and seems like she will be a good addition to <u>team tiny mights.</u> </div>
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So things are starting to get better....We've been told to not be disappointed by "two steps forward, 1 step back". We have had several steps forward in the last few days, and I'm hoping for none back for now....</div>
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Thank you for all the food (everyone is bringing us lots of yummy food), cards, flowers, calls and emails. We are blessed to have such great friends, family, and community.</div>
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com5tag:blogger.com,1999:blog-5502181350400401263.post-61525496322258835412012-03-22T21:25:00.000-07:002012-03-22T21:25:03.005-07:00A Ray Of SunshineThank you for all the wonderful support; We continue to receive emails, calls, texts, letters, cards and are really feeling the love. Its great. And more importantly, its working!!! The positivity is flowing and the girls are feeling it!<br />
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The last 48 hours have seen good news. Sara decided to draw a picture for the girls; Her drawing and creative skills remain incredible. She has coined the girls as the "tiny mights", as seen here. This picture hangs next to each of their pods in the NICU, and the nurses and doctors love it. </div>
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<tr><td class="tr-caption" style="text-align: center;">Tiny Mights!</td></tr>
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Today we said goodbye to two of our doctor "residents", Amy and Stephanie. They are moving over to the children's hospital in their normal "rotations". We are sad to see them go, as they have been instrumental players in our girls care. (We gave them cermonial "team tiny mights" cards to take with them). They are both exceptional individuals, and the level of care that our girls are receiving is incredible. Thanks ladies!</div>
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Without further a due, here is the good news:</div>
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<b>Ashlyn:</b> </div>
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Showed very low fluid output overnight, almost none. While this does not necessarily mean her chylothorax condition has healed, its certainty a step in the right direction. She is off the Lasix and antibiotics, and is seeing improving oxygen uptake (meaning lower oxygen requirements). </div>
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The big news is that today around 4pm she was extubated! They removed her breathing tube (for the first time in her short 14 day life), and she is now on CPAP and breathing somewhat on her own!! Awesome progress! Even better, they are talking about taking our her chest tube over the weekend! EPIC!</div>
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They are going to reintroduce feedings with Enfaport (low fat milk that doesn't aggravate the chylothorax) and we will hope that no fluid begin to re accumulate. They explained that if fluid starts to re accumulate (which means the chylothorax hasn't closed) that they would have to reinsert the chest tube, which would not be so good. </div>
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However, we are going to keep the train rolling and hope and pray that introducing the feedings won't result in fluid, and that the Chylothorax is closed or closing. </div>
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All in all, remarkable progress for our little girl. Lets keep it going!</div>
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<b>Hanna:</b></div>
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Still good. She has ramped up to full feedings now, and is pounding down 30ML of Sara's breaks milk every 3 hours. They moved her feeding tube from her mouth to her nose (which she seems to like, not sure why).<br />
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She still has a slightly elevated heart rate, and no one is too concerned. Sara is doing Kangaroo care for 1-2 hours a day with her, and we have even put a micro Binky in her mouth a few times.<br />
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All in all, she's rocking her 2 week birthday today.....<br />
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We'll leave it with some humor tonight....Sara's sister Kathryn snapped this photo today, and the girls all got a good laugh at my rapidly receding hairline.....so much for for getting grey. </div>
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Go Team Tiny Mights!</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-15319206852278524462012-03-19T21:28:00.001-07:002012-03-19T21:28:49.017-07:00Holding HannaI think it might be time for a "Mommy" post. First, I really do want to thank you all for the love, support and prayers you are sending our way. I believe it is really working and I am so grateful to all of you! I have been pretty silent the last 10 days. I have received a lot of calls, emails, and texts from friends asking how I am and offering to help in any way. Thank you all for your kindness! This has been very hard but I know we will get through this and I have my eyes on the prize..bringing our girls home.<br />
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My multi- talented husband has been great at keeping you all informed and even I learn from reading his posts. While Cary thrives off the doctors rounds and all the names, conditions, medications etc keeping our girls going, I thrive on the moments I get to hold Hanna. I am looking forward to the day I get to do Kangaroo Care with both of my sweet girls. <br />
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The girls have staggered care times every 4 hours. Between these care times they should not be disturbed so they can rest and grow and recover from all these stressful procedures. I try to participate in these care times when I can. I take their temperature and change the worlds tiniest diapers. Today they adjusted one of Ashlyn's many lines and I helped by putting my hand on her head and bringing her arms into center for comfort. Every day I do Kangaroo Care with Hanna for around an hour. We are skin to skin and it is the sweetest feeling. In the womb a baby gets about 20 hours of deep sleep. In the NICU they get about 2 hours that are made up of short 20 minute snatches here and there. During Kangaroo Care your baby regulates to your heart beat and falls into this much needed deep sleep. Within a minute Hanna is asleep on me. She usually does not stir the whole time we are together. I am glad I can hold Hanna and she is taking more and more of my stock pile of milk.<br />
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Due to Ashlyn's chylothorax she can not tolerate my breast milk. She can not process the fat in my breast milk -it actually will cause the chyle fluid to increase. This makes me feel even more helpless to care for Ashlyn. I have been talking to the Mother's Milk Bank about a process they may be able to do to my milk to make it Fat Free. ( One skinny latte coming right up Ashlyn!) So I am hoping I can start feeding her.<br />
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As hard as this journey has been I am glad my girls are here! I know if I was not living in the hospital being monitored closely and if I did not have Dr Galan and his amazing team making the right decision for my girls, they would not be here. They truly are miracle MoMos and I know they are tough and they give me courage, strength and inspiration. Go Girls! Mommy Loves You!<br />
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<tr><td class="tr-caption" style="text-align: center;">Ashlyn's Care Time</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Holding Hanna</td></tr>
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com5tag:blogger.com,1999:blog-5502181350400401263.post-23171570924711584632012-03-19T20:08:00.002-07:002012-03-19T21:38:43.831-07:00Emotional chartingI have followed the stock market for the better part of 20 years now. My dad, a true market master, instilled in me the desire to be an observer and participant of the grand game. <br />
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One of the most fascinating things about the market is to look at stock price charts. They tell the "emotional" story of price discovery in the markets. Candlestick charts, which originated in Japan some 500 years ago, are a meaningful window in the market participants emotional reality.<br />
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If I was to chart my own personal emotional index with the events of the last 12 days, it might look like this....<br />
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<tr><td class="tr-caption" style="text-align: center;">Cary's emotional index</td></tr>
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It shows a steady decline; Then a quick uptick, followed by a crash to new lows....Stocks usually hit a bottom when fear and panic set in, and I'm hoping the same hold true in my own emotional index, which hit new lows two days ago. After all the bad news is out and priced in, how much lower can you go?<br />
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I have received calls, emails, and texts from friends and neighbors, and seen alot of people. They all kind of look at me funny and say "Wow, I can't even imagine what your going through right now...."<br />
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Its true: this is an intensely difficult and painful chapter. There is no sugarcoating the feelings of helplessness, sadness, and fear. It sucks. However, the good news is that Sara and I are handling it all pretty well. And we will get through this.<br />
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This blog started as a way to tell our story to other MOMO families, whose blogs we read, to provide guidance and comfort through these uncharted waters. Then it was a way to keep folks updated about the progress of the girls and to avoid 40 phone calls a day.....Some part of it has now turned into a release mechanism; It feels good to write about the roller coaster of emotion through these pages, and we hope that other families that go through difficult situations like this will share some comfort that they are not alone.<br />
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<tr><td class="tr-caption" style="text-align: center;">Kathryn, Sara's Mom, & Megan</td></tr>
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Many of the previous posts have been fairly dark I admit; but hey, this isn't exactly rainbow and unicorn territory right now. The good news is we still have a sense of humor, no one is jumping off any cliffs, and we still have a sense of excitement about the future with our new ladies. Thanks for all the wonderful outreach and support.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-tUQOJ2p33Yvt0-RLubDTkJyDLT_HUYA83zcpxBqozjZl6f_DZqVGiVpZOgUxzFtX1_9qeNchttPKyQ1V8OVhAVhbhxI59xYXsVcCZVV221Ggyv-SRvMpZYyGV0a2bDRP0C4t1P8CqV1z/s1600/Sara+sisters.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-tUQOJ2p33Yvt0-RLubDTkJyDLT_HUYA83zcpxBqozjZl6f_DZqVGiVpZOgUxzFtX1_9qeNchttPKyQ1V8OVhAVhbhxI59xYXsVcCZVV221Ggyv-SRvMpZYyGV0a2bDRP0C4t1P8CqV1z/s320/Sara+sisters.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sara, Kathryn, and Megan</td></tr>
</tbody></table>
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Sara parents have been in town for several weeks now, and this past weekend her sisters came to visit; Megan in from Park City for the weekend, and Kathryn who is in from California for a week. I know Sara is happy to see them, and its great that they are here.</div>
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<br /></div>
With that said, it has been a happily "uneventful" two days. Here is the update:<br />
<br />
<strong>Ashlyn: </strong><br />
<ul>
<li>After discontinuing her feeds and inserting the 2nd chest tube 2 days ago, her fluid drainage has slowed to around 20 CC's as of last night-Relatively good news</li>
<li>Her lungs look pretty good, and she is off antibiotics-good news</li>
<li>They have decided to remove her original chest tube (right side) tomorrow! This should be GREAT news, but I am tabling my enthusiasm as they say the tube is now clogged and most of the drainage is coming out of the other side. So, an incremental improvement I suppose.</li>
<li>Lasik treatments to act as a diuretic</li>
</ul>
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Her main problem continues to be this Chylothorax, which is serious. It needs to close, and soon. </div>
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Everyone repeat after me: "Attention Ashlyn Hayes's Thoracic duct-CLOSE NOW!!!!! Thank you for your cooperation."</div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyKFdu1JNQebetTa79FLahNhnFabghmPn8KOSLvdsBXfq5HDt-3FZ5a_jlwrE9O5cA5KbdNkTHpMDI8Iq76M1gxiD5qb6mZwh7Vdq5cMHhmOwuo_N-vJb68gV6NeGzpJF9v-5SKvMnUdaU/s1600/Sara+Kangaroo.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyKFdu1JNQebetTa79FLahNhnFabghmPn8KOSLvdsBXfq5HDt-3FZ5a_jlwrE9O5cA5KbdNkTHpMDI8Iq76M1gxiD5qb6mZwh7Vdq5cMHhmOwuo_N-vJb68gV6NeGzpJF9v-5SKvMnUdaU/s320/Sara+Kangaroo.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sara "Kangarooing" with Hanna</td></tr>
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<strong>Hanna: </strong></div>
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No major issues, other than her high heart rate. Every time I try to get excited about it, and worry about it, the doctors tell me to chill. So I'm not worrying about it. </div>
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Sara is doing daily Kangaroo care and she is increasing her feeds. She may get her "pick line" IV out soon!</div>
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All in all, things are stable with incremental improvements.<br />
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Thanks for all the love ands support. Please pray and send power to our girls!</div>
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<br /></div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com1tag:blogger.com,1999:blog-5502181350400401263.post-14644710296933278202012-03-17T15:43:00.001-07:002012-03-17T16:38:50.969-07:00The Junior PartnerMy Mom & Dad came down to visit the girls in the NICU last week. My dad is is a very funny guy, and remains among the most entertaining people I know. He is always cheerful, talking about his favorite pastimes; the Blackhawks or the Bears, the stock market, or current events. He was a lawyer in his career for the better part 35 years, and still speaks the tongue.<br />
<br />
Sitting in Hanna's "pod" in the NICU, my dad motioned to the "pod" next door was Ashlyn lives, and says "How is the Junior partner?" I laughed out loud for a good minute or two.....It was a much needed good belly laugh, and a funny and very accurate description of Ashlyn. <br />
<br />
She has been the junior partner right from the start. Our first real indication of trouble came around 22 weeks, when ultrasound first indicated she was much smaller than her sister; Her head, stomach, and estimated weight were all lower than Hanna's. It was estimated at one point she was 30% smaller than her twin. She came out only 20% smaller than her sister, however, that hasn't changed the hard reality. She continues to be the "junior partner" and get the short end of the stick.<br />
<br />
My Iphone read "unknown caller" around 10am this morning, and I knew instantly who it was. The hospital NICU has called several times, and it always reads the same. They don't call to give you happy, cheerful status updates on your children in intensive care; they only call to tell you about problems.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAdS-7gfZ_D1KjK4OpCgwMgTRZRl5C6QpgXXtIB52sEPFo1SPgYTES_81M1UzYGLCJ_7zchLEoWyxJtbNXX-Wo0to8Hb36NL05u6tR-QTTDSRF32N52Bg8kFmSNlaDBSMxGDPW5-LosApp/s1600/Hanna+Sat.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAdS-7gfZ_D1KjK4OpCgwMgTRZRl5C6QpgXXtIB52sEPFo1SPgYTES_81M1UzYGLCJ_7zchLEoWyxJtbNXX-Wo0to8Hb36NL05u6tR-QTTDSRF32N52Bg8kFmSNlaDBSMxGDPW5-LosApp/s320/Hanna+Sat.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanna on Saturday</td></tr>
</tbody></table>
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<div style="border: currentColor;">
I answered, and a Amanda, a new "resident" introduced herself on the other end of the line. She explained that Ashlyn had had a rough night....A whopping 80 CC's of fluid had drained out of her chest tube, and she was having increasingly difficulty breathing. they had turned her ventilator all the way to 50 to compensate. They had done a round of xrays and seen a large fluid buildup; Not on the side with the chest tube, the right....... but on the left side. She was calling for permission to insert a 2nd chest tube, this time on the left. She went through all the standard disclaimer; risk of infection, risk of bleeding blah blah blah....Then said "besides that, she's doing great!" </div>
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<div style="border: currentColor;">
That familiar feeling started again; the deep pain starting to well up inside me. I went upstairs and told Sara and she started to cry. We went down to the NICU soon therafter. </div>
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<br /></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2J4BpxZX2Rb7zjv4yVd9BA4cMU-tapS6_yPcUUiYk4LEu-_PQi91xi0qFFwrYnYTQ74MSOArDXUTwlBD0TPEvBnFVSzakNY5TnaWwGtumF_sFRLyc8ItjR7-0EBpT0uycGdqF7M26EZGr/s1600/weekend+rounds.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2J4BpxZX2Rb7zjv4yVd9BA4cMU-tapS6_yPcUUiYk4LEu-_PQi91xi0qFFwrYnYTQ74MSOArDXUTwlBD0TPEvBnFVSzakNY5TnaWwGtumF_sFRLyc8ItjR7-0EBpT0uycGdqF7M26EZGr/s320/weekend+rounds.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Weekend "rounds"</td></tr>
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<div style="border: currentColor;">
We arrived just in time for "rounds". It's a different crew on the weekends. They went through the standard routine; Ashlyn had:</div>
<ul>
<li><div style="border: currentColor;">
80 CC's fluid drain from chest tube</div>
</li>
<li><div style="border: currentColor;">
20 CC's from 2nd chest tube</div>
</li>
<li><div style="border: currentColor;">
on 55% oxygen</div>
</li>
<li><div style="border: currentColor;">
Recommended stopping feeds </div>
</li>
<li><div style="border: currentColor;">
Off Antibiotics</div>
</li>
<li><div style="border: currentColor;">
Visibly Bloated</div>
</li>
<li><div style="border: currentColor;">
Adding Hydro cortisone</div>
</li>
</ul>
<div style="border: currentColor;">
Hanna's report was better: No major issues-a slight concern with an elevated heart rate (tachycardia), and murmur related to a hopefully closing PDA, but otherwise increasing feeds and gaining weight.</div>
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<br /></div>
<div style="border: currentColor;">
Looking at poor little Ashlyn was painful. She was totally bloated, and didn't look like the same micro girl we had left the day before. With 2 chest tubes sticking out of both sides of her chest, and asleep on pain meds, she didn't look so good. </div>
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<br /></div>
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I chatted with the doctor for awhile, and he told me they say "5 or 10" Chylothorax's per year in the NICU in Denver. He says "Its really a weird one.....but the good thing is it's treatable. It just takes time, maybe weeks. The lymph system simply has to plug the hole and heal itself...not much we can do but wait."</div>
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<br /></div>
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Sara and I spent a few hours at the NICU; Sara pumped and did "Kangaroo care" with Hanna. We put our hands on poor little Ashlyn, but 9 days into her life, have yet to hold her. We drove home in silence, the emotional tidal wave of it all crashing over us. </div>
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All in all, a very difficult day, maybe the worst yet since we started this journey. </div>
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Please give our "junior partner" some good vibes and prayer. </div>
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<br /></div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com5tag:blogger.com,1999:blog-5502181350400401263.post-17037755833298422142012-03-16T16:53:00.000-07:002012-03-16T16:53:19.823-07:00The glass is halfPerspective. Its hard thing to come by in the trenches of the NICU. Flashing lights, beeping alerts, lots of IV's and tubes running everywhere. And varying information that elicits varied response... Its hard to know if the glass is half full or half empty. Maybe its just half.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZkxzeRALPXtEyi-lVpYXzKpdqvCr-5M6psymp9opd7h3TFDgFeLZBytr0RI4Vi7DRvjNf_zMy9FHFAovmRfYa6B0gQKAuLTKsz_RIci7pITs-3C4zeOVmyumQNY1EOeZ3EJnFT-po8uu/s1600/Rosenberg+holding+court.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZkxzeRALPXtEyi-lVpYXzKpdqvCr-5M6psymp9opd7h3TFDgFeLZBytr0RI4Vi7DRvjNf_zMy9FHFAovmRfYa6B0gQKAuLTKsz_RIci7pITs-3C4zeOVmyumQNY1EOeZ3EJnFT-po8uu/s320/Rosenberg+holding+court.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr Rosenberg presiding over morning NICU "rounds"</td></tr>
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After last nights bad news about the brain bleeds, Sara and I didn't sleep too well. She was up pumping in the middle of the night, and I was fidgeting around in the bed. We awoke and stepped into the NICU just in time for the morning rounds. This is where the main doctors, the fellows, residents, nurses, and pretty much everyone go around the whole NICU. They form a circle near the particular baby they are going to be talking about;laptop computers are rolled up on stands, and notebooks are out. </div>
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The presiding "resident" doctor then explains the "case" on that particular baby, and develops his/her recommended treatment course and actions. The overseeing doctors then challenge the "resident" into why his/her thinking is such, and challenge the group to think about alternate solutions. After some insightful debate, the overseeing doctor stamps his approval on the "resident's" course of action, and they move on to the next case.</div>
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<br /></div>
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I've found the "rounds" to be the best opportunity to glean the purest information about Ashlyn & Hanna. There is no candycoating, no subjective emotional talk; It's straight up clinical diagnosis and course of action. Its fascinating.</div>
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<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgegSRxh7PvriaMgAhhwBHfzI9UlHj0t-jyyM52GRfH_rzSVkvRUKIuaYDEW0ltnO3RYpfYcMLtKHIrwYtERe5PUm6zGJi00o0YROXh4RN_Qj3mXcEucV7I_gj3fmUjDIx7VKPqQ1dryQ6l/s1600/Stephanie+&+Hanna.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgegSRxh7PvriaMgAhhwBHfzI9UlHj0t-jyyM52GRfH_rzSVkvRUKIuaYDEW0ltnO3RYpfYcMLtKHIrwYtERe5PUm6zGJi00o0YROXh4RN_Qj3mXcEucV7I_gj3fmUjDIx7VKPqQ1dryQ6l/s320/Stephanie+&+Hanna.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Resident" Stephanie working on Hanna</td></tr>
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Being the good student I am (my mother might disagree), I had my laptop open during the rounds and took notes. The whole group kept looking over at me as I was furiously making notes about their discussion, and laughed at the end as they asked if I had gotten it all. This is what I gleaned:</div>
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<strong>Ashlyn: </strong></div>
<ul>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
PDA duct minor, no more treatment for now</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Gained 40 grams overnight, all fluid related</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
drained 18CC's of Chlyle overnight from chest tube</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Urine was low and concerning</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Possible adrenal gland issues</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Pulling UA line today</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Trying to advance feeds with non fat enfamil as to not aggravate Chylothorax</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Start Albumin</div>
</li>
</ul>
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Cary's interpretation- Fairly stable, but with a new issue; Fluid retention. Her drain increased overnight, and they are replacing more fluid than she is losing, and she's not urinating out the excess. Troubling. She is semi-bloated. Both Stephanie and Amy, the two "residents" that care for Ashlyn, say she still is an "active player" in the NICU. I take that as she is sick and struggling.</div>
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<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPFnz_hTQpmMzDhWg75xcBzinxb992FjPK7ZUmBBr8l_R5aZp0BiR8QqSBC0xtS_F1o_pB0sahZAuAA1hEm2qZ62ICCyHWDVqWlpwZhYAUI0DeAD9cHs1kvBs2sBydj2PB-vEvx_qBokOj/s1600/Sara+momo+pictures.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPFnz_hTQpmMzDhWg75xcBzinxb992FjPK7ZUmBBr8l_R5aZp0BiR8QqSBC0xtS_F1o_pB0sahZAuAA1hEm2qZ62ICCyHWDVqWlpwZhYAUI0DeAD9cHs1kvBs2sBydj2PB-vEvx_qBokOj/s320/Sara+momo+pictures.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sara's twin drawing posted on the wall in NICU</td></tr>
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<strong>Hanna:</strong> <ul>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Weighs 1120 grams, down 80 grams from birthweight</div>
</li>
<li><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
On high flow oxygen, reducing from 3 to 2.5</div>
</li>
<li><div align="left" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Murmer still apparent</div>
</li>
<li><div align="left" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
increasing feeds</div>
</li>
<li><div align="left" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
continuing Caffeine </div>
</li>
</ul>
<div align="left" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Cary's interpretation: Continuing well, increasing feeds. No major issues. Heart murmer is PDA that is likely closing, no treatment. Doing most everything right.</div>
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On a final note, we did get some good news I suppose today from Dr Rosenberg. After "rounds", I cornered him to ask about the brain bleed news we received last night. He said "Its probably just an "artifact", and so small anyway, I wouldn't lose any sleep over it." An "artifact" is apparently a shadow or a misprint on the ultrasound machine. So after the freakout of last night, hearing about brain bleeds and thinking very bad thoughts about brain damage, he re-assured us that he is not that concerned about it. Hard to know, and we woul'nt know about any consequences from it for a matter of months/years anyway, so I'm going to try and not worry about it.</div>
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So, is the glass half full or half empty? Right now, its just half.</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com3tag:blogger.com,1999:blog-5502181350400401263.post-28789909376407234032012-03-15T20:38:00.000-07:002012-03-16T15:45:16.195-07:00NICU Punching BagSara and I came down to the NICU late this afternoon;They have have special "family" rooms...Little rooms with a bed and bathroom, maybe a little better than motel 6. Families with NICU kids are allowed to stay in for up to 2 nights a week, which makes it easier to catch a nighttime "care time" and the morning rounds. So, we are settling in for the night.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhLQF9nZrL6ZcFsX1TD9Rm3tBMwA0EPtrgCkHLrXcU5bqiA11y1soKtToCMKKLQnyPLeMwxZ2elgOLfYGZjPX2Wz8WLaXNwTBsXejjnQXxL93m_BboGyHI_vRXna4s1n9b5s9ElMZxG3u/s1600/Family+Room.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhLQF9nZrL6ZcFsX1TD9Rm3tBMwA0EPtrgCkHLrXcU5bqiA11y1soKtToCMKKLQnyPLeMwxZ2elgOLfYGZjPX2Wz8WLaXNwTBsXejjnQXxL93m_BboGyHI_vRXna4s1n9b5s9ElMZxG3u/s320/Family+Room.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "family room"</td></tr>
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Every day in the NICU that goes by, we are faced with new challenges. I think the trenches of the NICU are similar to the stepping in the ring with Muhammed Ali....A right hook, a few body blows, a left, then an uppercut.....You get knocked down, get up, then get knocked down again.....Your simply trying to stay alive; keep your head down, dodge the next haymaker knockout blow, and keep going. I liken the feeling to be a punching bag. Every time I get get punched, I absorb it, and then get ready for the next one. They seem to never end. <br />
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Its been exactly one week since the girls were born. In a "normal" pregnancy we would be home by now, enjoying no sleep and a crying baby all night. Instead, we are spending nights getting restless sleep. I never thought I would yearn for the sound of a crying baby in the middle of the night. <br />
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Sara is pumping every 4 or 5 hours in the night, and storing the milk in little containers to bring down to the NICU. Her milk has really come in, and she is getting plenty of milk for both girls in their tiny situations.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6pifb3eLbEmWq9YjduA4u8jRodrzBJ4RpezvZBIrCzb5mVA-nENaE4NokAQkoVN7xqsYCOzwnEFT-9164ycIBUECEnNS0PGS7UJXg83OiQK1yGxamEi4MHLNHSOzgN1QmNPd-swLidiwc/s1600/Donna+&+Ash.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6pifb3eLbEmWq9YjduA4u8jRodrzBJ4RpezvZBIrCzb5mVA-nENaE4NokAQkoVN7xqsYCOzwnEFT-9164ycIBUECEnNS0PGS7UJXg83OiQK1yGxamEi4MHLNHSOzgN1QmNPd-swLidiwc/s320/Donna+&+Ash.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Donna & Ashlyn</td></tr>
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<strong>Ashlyn:</strong> We left the NICU last night with some<strong><em> <u>positive</u></em></strong> news on Ashlyn. One of the doctors came running down the hall after us as we were leaving to tell something good. Her PDA, the duct in the heart, had reacted well to the indomethacin treatments. It had been downgraded 2 stages. From Severe to moderate and then from moderate to minor! This was welcome good news, really the first we have received. It was great to go home to. This essentially takes the PDA out of play, as its closed enough that unless she showed very bad symptoms, they would not do anything further about it. I'm calling that a win, and checking the PDA off the list. </div>
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Tonight we came in and were feeling optimistic about last nights events. Unfortunately, we learned some more bad news. </div>
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They stopped one of the two antibiotics Ashlyn is on because she doesn't need it. Why doesn't she need it? Because they found something, and this particular antibiotic <br />
doesn't treat it. They have found a very small Staph infection near near breathing tube. As Amy, one of the NICU doctors put it, "we grew just a very few small cultures from it, so its very small. We are treating it, and don't expect it to worsen." </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnnRiAyk4fuRdUW0NL32txi1CmfmeAoljQMgyGBZXrmrH1jl_9T934TlCwX-qCqZkgY8WwIgVUZv8IyD1scxqLaHgSoygxRbbiV6klNv5gBu95uLrUHL6MdexRliMKDezCCJnLv999NUuN/s1600/Hanna.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnnRiAyk4fuRdUW0NL32txi1CmfmeAoljQMgyGBZXrmrH1jl_9T934TlCwX-qCqZkgY8WwIgVUZv8IyD1scxqLaHgSoygxRbbiV6klNv5gBu95uLrUHL6MdexRliMKDezCCJnLv999NUuN/s320/Hanna.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanna</td></tr>
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Anytime you hear staph infection, you don't get all warm and fuzzy. </div>
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After the infection news, the two NICU doctors continued how well Hanna was doing, and how stable Ashlyn was................</div>
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I saw it coming.....I could see that they had rehearsed their lines, and were forming a delivery.........Sara was oblivious, but I saw the body language of these ladies, and my fighter instinct kicked in....I braced myself, tightened my stomach, and got ready for the next big punch to the gut.</div>
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They told us that a scan had revealed small brain bleeds in both girls cerebellums. Hanna on the right and Ashlyn on the left. The first thing I thought of was "wow, this means they really are mirror twins...they really have almost identical characteristics on differing sides, how cool..." Then I thought again, and decided not so cool. They explained that these brain bleeds were small, and found in the cerebellum, the motor control area of the brain. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibTQ7lGd-eIwZAmmz9jCghl8PuaP6CneVtC9rr6DfxdBHcCu1MRr7wuWtdMapuVEkH8j7mv8d5xYiX5S8x_NA3uMpQoMtL1xgzAPDn-ddkV3FPiXjbLtpu-MiXPnHjcoLf1TieTJ3oBwo2/s1600/Hanna+Closeup.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibTQ7lGd-eIwZAmmz9jCghl8PuaP6CneVtC9rr6DfxdBHcCu1MRr7wuWtdMapuVEkH8j7mv8d5xYiX5S8x_NA3uMpQoMtL1xgzAPDn-ddkV3FPiXjbLtpu-MiXPnHjcoLf1TieTJ3oBwo2/s320/Hanna+Closeup.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanna closeup</td></tr>
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My heart sank; I felt the familiar feeling of the tears coming, but I held them back. 7 days in the NICU has taught me to be a pro-fighter, and I took the blow and didn't squeak. I saw the look on Sara's face; I knew she was caught by surprise by that punch, and was knocked to the ground.</div>
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A quick "google doctor" on the subject shows higher risks of cerebral palsy, other motor control issues, and lots of other fun problems. The NICU nurses reassure us that brain bleeds are very common in premature babies under 32 weeks, and usually will heal themselves. They keep trying to reassure us that everything will be fine.</div>
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We went to chipolte for dinner, and sat in silence eating burritos. I asked, "Are we having fun yet?" </div>
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I'm left tonight with the following from a preemie blog post on a support group site....</div>
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<em>Anonymous (8:17am) wrote: "what's the point of this? so, if your preemie has a bleed in the first few days of life you are supposed to...<br />A) discontinue life support<br />B) become depressed b/c studies show you *might* be raising a special needs child<br />C) nothing<br />D) Tuck the info away in my mind so I may better understand my child in the future. </em></div>
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If this was a multiple choice test, I'd take B and C.....But it;s not so my answer has to be D.</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-48198106812046228902012-03-14T12:47:00.000-07:002012-03-14T21:13:14.070-07:00In the TrenchesOne of the hard things about this experience so far (there are many of them), is trying to get a grip on the the big picture. It's hard to know what the bigger picture looks like. <br />
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Spending the better part of every day in the NICU for the last 5 days is a very heavy experience. I still get spontaneous moments where I well up like I'm about to cry, but usually just hold most of it in. NICU nurses, who are some of the most amazing people I have met (more on that later), always say that life in the NICU is measured in hours not days. They are concerned with very immediate issues of life and death. I suppose ICU for adults is the same way, however it seems to be even more dramatic here. So, living "in the trenches", on the front lines with the NICU nurses provides a very unique perspective.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZCWxcv70RVuFqskoEg-hW5A4U6XZW8jIyhHzbUfWqcYbZ9VHTPNOh_2gTKfc9h2TZNULfUUrMlX426wu0LRbFMDTkotiSNaEy_XAb7DDV38y2wsLYmPXkGVZcuxBzSlwGCfbw0nik3ShK/s1600/NICU+screen.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZCWxcv70RVuFqskoEg-hW5A4U6XZW8jIyhHzbUfWqcYbZ9VHTPNOh_2gTKfc9h2TZNULfUUrMlX426wu0LRbFMDTkotiSNaEy_XAb7DDV38y2wsLYmPXkGVZcuxBzSlwGCfbw0nik3ShK/s320/NICU+screen.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">NICU screen</td></tr>
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This is the main NICU screen that keeps me in suspense and fear....The green number at the top measures heart rate; next down the blue number is oxygen saturation; next is the red blood pressure and finally the yellow number at the bottom is measuring breaths per minute. You want the heart rate to stay between 140-170 or so; the oxygen between 84-94; The BP around 35-40; and I'm not sure on the breaths per minute...This is Ashlyn's screen today, and is registering pretty normal here. </div>
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These screens have most horrific alarms that go off if the vitals stray from the norms...Its starts beeping with flashing red lights. It's a noise and feeling that I'm sure I will live with the rest of my life. </div>
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Alot has happened in 48 hours or so since my last post.....some good and some bad. Thanks for the amazing outreach and support.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvohQuXscseSHWH25Ct4tY67_nUFjvQnxY_g67Z2U1jNoJSCW0uDG9AzrEvCR4DjmumD3SIGio90PUDDvoYTMXNPw8FZQ0VfmPgndRI0BQNntT022SjBbqrW0dFSXXbUdBuBzxyc4hdADs/s1600/Chest+good.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvohQuXscseSHWH25Ct4tY67_nUFjvQnxY_g67Z2U1jNoJSCW0uDG9AzrEvCR4DjmumD3SIGio90PUDDvoYTMXNPw8FZQ0VfmPgndRI0BQNntT022SjBbqrW0dFSXXbUdBuBzxyc4hdADs/s320/Chest+good.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Good Chest</td></tr>
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<strong>Ashlyn:</strong> She continues to have a rough entry to the planet. Monday night they took another round of Xrays and found these results. Her draining left side (you can see the chest tube on her right side that wraps up around her arm and shoulder) was doing fairly well and the oxygen was getting into her lungs. The darker space in the xrays shows air in the lungs and is good. The "white" shows no air penetration and is bad. <br />
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These were taken Monday night, and showed a serious deterioration in Ashlyn's left lung. Very bad. The doctors didn't quite know what to make of it when we left Monday evening when these were taken. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN48L0LMngH9FYBQHYUmTjaAZY0xEixDgYuz_4FTuiIAiChnVpiTWSeNOHaAhbjn8G9xO8bUORAhppM2fgWWGKNwOyi3rWrUTBU6H6HZPbrpvySG4MhN4zSP3TX7O2v6gaeACiImWR3Vs4/s1600/Chest+bad.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN48L0LMngH9FYBQHYUmTjaAZY0xEixDgYuz_4FTuiIAiChnVpiTWSeNOHaAhbjn8G9xO8bUORAhppM2fgWWGKNwOyi3rWrUTBU6H6HZPbrpvySG4MhN4zSP3TX7O2v6gaeACiImWR3Vs4/s320/Chest+bad.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bad chest</td></tr>
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We got the call Tuesday morning; They had found lots of fluid on the her LEFT side, and that what was causing the lung to not inflate. They had done a procedure overnight to drain the LEFT side by sticking in a needle to drain it, and she seemed to respond well. We were not thrilled to hear this news, but it happened during the night and we didn't even know till the next day.</div>
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This is only 1 of her various issues she is facing. She finished her 2nd round (of 3 doses) of indomethacin to try to close her PDA. The PDA has now changed from "severe" to "moderate", which is moving in the right direction, albeit not completely closed. They are hesitant to give a 3rd round as it has side effects. Talking to the Doctor this morning, he said they will do another echocardiogram this afternoon to look and see if the PDA is closing. If the Indomethacin doesn't work, they are talking about surgery. I can't quite get my head around what surgery looks like a tenny preemie, and the risks associated and I hope we don't go there. Close PDA CLOSE!!!!!!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj44pXmC-hmF3HWjflnOaNVpxv9bjiaPoSG2fJKF0-0qsYNFt6FNJx2Pb3t2E77lRV1gB1O1IeJJLg7JMKl2SyNoaE9dMtPd9IRpp_KEpOASg5fQG_K5dmeZQSNk-vvV9rg67RGobASUMpF/s1600/Chest+tube+tank.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj44pXmC-hmF3HWjflnOaNVpxv9bjiaPoSG2fJKF0-0qsYNFt6FNJx2Pb3t2E77lRV1gB1O1IeJJLg7JMKl2SyNoaE9dMtPd9IRpp_KEpOASg5fQG_K5dmeZQSNk-vvV9rg67RGobASUMpF/s320/Chest+tube+tank.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chest tube tank</td></tr>
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Here is the chest train draining tank, and as you can see, has drained around 90CC's worth of yucky brown Chyle from her chest. This is issue #3, her Chylothorax. The doctors say that this isnt a huge amount (it sure looks like it to me), and that it seems to be slowing. You can see the black lines that are drawn on it to mark its progress at various time intervals.</div>
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So overall Ashlyn's status is stable. You might say the lung drain and re inflation is baby step towards improvement, but new issues compounded on top of things is not good in my book. </div>
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This morning (Wednesday) they changed her intubation tube to a larger size that fits better down her throat. This has helped her Oxygen levels, and they seem pleased. Her blood gases are coming back fairly good. She is a fighter, and continues to fight through a rough, rough, rough, start to her young life.</div>
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I continue to tell her she needs to "get it together" and "turn the corner" for us. Telling her that I'm going to kick her ass when she's older doesn't seem to be working, so I'm trying bribery. "Ashlyn, you can pick out ANY car you want from the auto dealership when you're 16, which would you like?!"</div>
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<strong>Hanna</strong>: Continues to move forward, and we are pleased by the good news. She got her CPAP machine OFF today, and has now downgraded her Oxygen needs to just a "nasal Cannula"...This means she is breathing almost entirely on her own!!! This is great progress. Go girl! </div>
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They are removing her white feed line from her umbilical cord today, and are replacing with what they call a "pick" line that is a normal IV in arm. This is OK, and actually a step in the right direction. They are going to start increasing her feeds today with mom's breast milk, and will only need the pick line in until they have her on full feeds. I am so so so happy she is progressing and am sending her all the best vibes to keep going forward.</div>
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<tr><td style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3Io57H0rt-dfDT_u_hZpjT0LlUqgZY3HxnDBRDTkSQg-jiz4fxX8lApfsFyLfZeH5bY3EAOrDMUcDw6w90YVtEC6yHV_Oom5RweMCmbvlXKVTNtQxarnih54TRw4TWU2uo6imhyp2mqq/s1600/Sara+message.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3Io57H0rt-dfDT_u_hZpjT0LlUqgZY3HxnDBRDTkSQg-jiz4fxX8lApfsFyLfZeH5bY3EAOrDMUcDw6w90YVtEC6yHV_Oom5RweMCmbvlXKVTNtQxarnih54TRw4TWU2uo6imhyp2mqq/s320/Sara+message.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sara's message</td></tr>
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All in all, she is doing everything RIGHT! (Like a good little girl should)..........</div>
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Speaking of Mom, we got Sara home on Monday night, which was amazing. She spent nearly a month in the hospital, and was happy to sleep in her own bed. Rylan was very happy to see mommy as well.</div>
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She has responded incredibly well to her C-section...She is walking around at normal speed, and is recovering much faster than a "normal" woman. But then again, we always knew that Sara is not "normal" woman....She's a superhero!</div>
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This was the note we wrote on her whiteboard in her hospital room before we left........</div>
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Meet Lauren....She talks with a little bit of a southern drawl, and has an intense personality. She is quick and bit sharp around the edges, but an incredible woman. She lives in Denver, has a son attending UC Santa Cruz, and and is a ski instructor at Copper Mtn when not in the NICU. She is one of the most remarkable and caring people I have ever met. </div>
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She suffers from Cancer, and is undergoing Chemo. She met Ashlyn over the last few days, and has decided to become Ashlyn's "primary nurse"....She explained that she likes the "hard cases", and that she has seen much worse. </div>
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She asked when Sara's "normal" due date was and we replied May 24th. That's when, if she was having a "normal" singleton pregnancy, that she was due to deliver.....The NICU staff keeps saying that you can expect babies in the NICU to go home no earlier than their "normal" due date, so we are expecting a lengthy stay....She then continued that she is rescheduling her next round of chemo until early June, so she can take this journey with Ashlyn.....I almost broke down and cried. This woman is postposing her own health care decisions, so she can take care of my daughter...AMAZING.</div>
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Finally, meet Adam Rosenberg, the cheif of the NICU and I believe the president of the entire Neonatal practice in Denver. From my vantage point "in the trenches' I asked about the big picture...."Is Ashlyn going to be OK?" </div>
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"Probably" he says</div>
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Is Ashlyn going to have a "normal" life?</div>
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"Probably" he says</div>
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He assured me that Ashlyn is stable and that the issues she is facing are not insurmountable. He then started to set expectations a bit...It was something like this:</div>
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"Ashlyn is doing OK, and she is likely to make it out of here in a few months. Is she going to have see more doctors when she is growing up? Most likely yes...Is she going to have lung problems....Maybe. Is she going to have cognitive issues...Maybe....Is she going to play soccer when she is 4 years old....probably....Its possible that she may end up being a very normal kid. Only time will tell."</div>
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Thats it for today....Thanks for all the love and support. Keep rooting for Ashlyn and Hanna!</div>
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<tr><td class="tr-caption" style="text-align: center;">Hanna with just the nasal cannula</td></tr>
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</div>Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com2tag:blogger.com,1999:blog-5502181350400401263.post-65974854511002591202012-03-12T11:35:00.000-07:002012-03-12T11:44:56.315-07:0087 HoursFirst, I want to thank everyone for the amazing outreach of love and support that Sara and I have received over the last 87 hours. That's how long the girls have been in "the outside world", and we thank everyone. We have received phone calls and emails from literally around the world, and its great to not only know we have lots of people that care for us, but we have a team that is united in praying for and rooting for the Ashlyn and Hanna.<br />
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Yesterday afternoon/evening was pretty rough....The reality of everything came crashing down on us, and the emotional intensity began to take its toll. Several rounds of tears. I had the chance to go home for a few hours last night and hang with Rylan. This relived the pressure valve a bit, which was good.<br />
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Sara is checking out of the hospital today, which is also good. She will be happy to be home after 3.5 weeks in the hospital, and to see Rylan. She is pumping every 3-4 hours now, and getting good milk. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2bjhdvI9lyGTiO-ImaYYW4jlUiFPLeU3pkk4Dvm_8aisOYeFklXb9QXteNyEKLp8Z2cJwWzlolHs4SQB2wc88DhJEITCAcRk1ja3Kp-PlC0tSKBtSbNcmIHy-bKE8kqAe8Oa_qpX9T_F-/s1600/Dad+and+Hanna.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2bjhdvI9lyGTiO-ImaYYW4jlUiFPLeU3pkk4Dvm_8aisOYeFklXb9QXteNyEKLp8Z2cJwWzlolHs4SQB2wc88DhJEITCAcRk1ja3Kp-PlC0tSKBtSbNcmIHy-bKE8kqAe8Oa_qpX9T_F-/s320/Dad+and+Hanna.JPG" width="320" yda="true" /></a>It's likely going to be a weird deal to go home after all of this with no babies with you. The reality is that we have 2 daughters in intensive care, which is a pretty tough deal. But, we know that they are getting the best care possible in one of the best NICU's in the country, so that is reassuring.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjirOAxuEukfilW7u3Bjy1M6NtaYlQdAg5JK1cKrMdI149DTV9vROTVWj9-kbk3B8Cy4pa06h2tBnvtvqZIlC98J1Yszz1hgl8PJ8GaB66twy5yUsJJLJ-B9fv-FN-Lf4GQd8AuOpUSeeaJ/s1600/Mom+cuddling+Hanna.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjirOAxuEukfilW7u3Bjy1M6NtaYlQdAg5JK1cKrMdI149DTV9vROTVWj9-kbk3B8Cy4pa06h2tBnvtvqZIlC98J1Yszz1hgl8PJ8GaB66twy5yUsJJLJ-B9fv-FN-Lf4GQd8AuOpUSeeaJ/s320/Mom+cuddling+Hanna.JPG" width="240" yda="true" /></a><strong>Hanna: </strong>Is doing well.....and is providing us with lots <u>positivity.</u> She is tracking nicely on her markers for her age so far, and is showing us no real issues which is fantastic. She has accepted her first few "trophic feeds" (these are small breast milk feeds given through a tube down her throat) to acclimate her to larger feeds later. She got her main arterial tube removed yesterday evening (less tubes is good!). </div>
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The big news is that we got to hold her for the first time!!! Its a little clunky to hold her with the tubes/wires, but the nurses help so its fine. </div>
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All in all, she is reacting to the outside world fairly well and hanging tough.We are proud she is so strong, and fingers are crossed that she continues to do well.</div>
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<strong>Ashlyn</strong>-The problem child. If she makes it to older age, I will be sure to kick her in the ass because she is definitely creating elevated blood pressure by not only mom & dad, but by the collective universe watching.</div>
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She continues to be sick. She has been getting the short end of the stick from her time inutero to now,and that certainly hasn't changed.</div>
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To summarize her challenges:</div>
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She has a potential chylothorax, and has a chest tube</div>
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She has a potential PDA, and indomethacin hasn't worked</div>
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She has only "OK" blood gases, and is semi toxic</div>
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She is intubated and has a collapsed left lung</div>
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And Now??? There's more. </div>
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She might now have an infection. </div>
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That's the big, not so good news as of 11am MDT Monday 3/12. The doctors said she had an "OK" night, and then saw a high white blood count this morning. They say they take everything very aggressively, and then recommending doing a spinal tap to test for Meningitis and other fun infections. </div>
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When I asked Kim, one of the doctors what this means, in conjunction with everything else she has going on she said "concerning, but not unusual. Many NICU babies develop infections and recover to do fine." </div>
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(Ashlyn with mom's hands)</div>
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Not sure what else to say....She's a tiny little preemie who is sick, and fighting for her life. All we can is hope, pray and send her strength and love to keep fighting. I had a good talk with her today that went as follows:</div>
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"C'mon girl, get it together....You can do this. You are a strong little girl, and I'm not taking no for an answer. My hair is getting gray, and I'm aging about 1 year for every day I'm in this damn place, so stop going downhill already, and lets start moving forward, shall we?!"</div>
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Please unite in delivering all your prayers and energy to give strength to little Ashlyn, as she needs it now more than ever.</div>
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I will be updating this blog once a day going forward, likely in the afternoons. Stay tuned.</div>
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<br />Sara Slocumhttp://www.blogger.com/profile/17625964683315245119noreply@blogger.com6