Graduation Day

It was more than 5 months ago I last wrote in this blog, with the final sentence being:

 "Its gonna be a tough summer."

Hanna & Ashlyn

Well, I was right on that one....It was a rough summer.

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......

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....

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.....

This week we learned that our girls are healthy, happy, normal little girls. They are OK!

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.

"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."

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.

The Tinymights

"Did he just say we're done?" I asked Sara. "We don't need to come back? Our girls are good to go?"

"Yep!" Sara shimmered with a smirk. "We did it....We made the right decisions, we were blessed. It worked. We did it!"

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.

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.

Sisters

A year later, after an unbelievable roller coaster ride of ups and downs, our girls are "good to go"......Unreal!

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.

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.

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.

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.

Da Girlz.....

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.

Ann & Tony (Sara's parents) lived with us from June-August and were amazing. As previously stated, we would have been dead without them.

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.

Ann &Tony "On Duty"

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.

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.

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.

Anne the Au-Pair with the crew

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.

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.

We have Healthy Girls!!!!!

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.

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....



Xmas is coming

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.

Thats all to report for now. Thanks for the support and love during this crazy year. It has really been something.

I will try to update this blog about once a month going forward to catalog the girls progress as they grow.....

Go TINYMIGHTS!

Sara has her hands full!

Daddy's girls

Hanna is HOME-Now the real work begins

It 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.

The girls come home

It is quickly becoming apparent with both girls home, that this journey is actually just beginning.

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.

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.

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.

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.

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.

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.



NANA



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.

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.

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.

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.



The morning routine, Rylan participating

 Here is an excerpt from Ann Slocum's description of the situation, which is right on.....

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.

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.  

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.

Halfway 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.



Happy Parents



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.....

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.



Nana happy to see Ashlyn home



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.

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.."

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.



Tiny Might Ashlyn

 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.

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.....

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.....

Ashlyn seems to be settling into her new routine, and is enjoying having Nana and Grandpa (Sara's parents) around to help with her.

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.



Ashlyn Home!

 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.

Hanna:

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.

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.

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!

Regardless, we need to get her home and think its going to happen this week.

Ashlyn:

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.

Thanks for all the prayers, love and support....One more round for Hanna to learn how to eat so we can get her home!

Day 82-False Summit

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.

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?!?!



The girls



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.




Hanna gives the finger to the bottle...



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.

I know that Sara and I are ready.

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.



Hanna all cuddled up


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.

We are close....Tantalizingly close to having the girls come.

Hanna:



PT for bottle feeding for Hanna

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.
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.



 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.

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.

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.

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.

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.

Ashlyn:

She's 5.5 LBS now, her growing is slow....but steady. She looking good!

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.

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.

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.

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.

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!

Day 64-Unpredictable

Anyone who follows the stock market knows that attempting to "time" the market is a very difficult endeavor. And yet, so many people try....

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.

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.....



Hanna

 Hanna:

Weighing in now at 6lbs 2 oz......

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:

1. Close the PDA on her own over the next few months
2. Make it to 9-12 months old and around 16lbs and have the "coil" surgery done to close it

The other alternatives are:

1. Do nothing and wait
2. Ligation surgery, same as Ashlyn

Her symptoms are pretty unpredictable:

1. Big desats (oxygen desaturations)....Basically she either has reflux after feeding, or stops breathing or some combinatrion therof, and her oxygen levels plummet-alarm bells ring and nurses come running into the room. It's not fun.




Sara & Hanna


2. 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.



 

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.......

Ashlyn:

Rocking it at 4lbs 14 oz.....

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."...



Ashlyn



WHO COULD HAVE PREDICTED THAT??!?!?

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.

Here is a video.....

Day 58-Changing Landscapes



Family "Tiny Mights" MOD walk



I spent most of this week in Arizona. Its an unusual state, with varied topography.

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.

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.



Journey School friends walking Team Tiny Mights!



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........

Hanna:

Weighing in a 5 lbs 13 oz now.....

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).



Hanna Sleeping



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".

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.

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.

Amazing to think that Hanna is now having issues...

After being the "senior partner" this whole time, and never showing any real problems, its terribly disappointing.

Ashlyn:



Ashlyn wide awake

 Rocking along at 4lbs 8oz now...Feeding well, and on 100% breast milk with no signs of her Chylothorax reappearing.

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.

She has remarkably-unbelievably changed places with her sister Hanna. Ashlyn is now the healthy one, and doing fantastic. Hanna is the new troublemaker.

The scales have tipped in Ashlyn's favor now, and perhaps she should be renamed the "senior partner".

Unreal.

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.

So, we are back to the prayer wheel. Please send prayers to Hanna and tell her to close her PDA.

Day 50 -Mile 22

Today represents a milestone day in the NICU...Day 50.

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.

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.

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.

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.

Today's news is good.




Hanna's touchdown pose

Hanna:
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.

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.

Both girls have 3 requirements to go home are:

1. Be able to breastfeed and/or bottle feed
2. Pass a "room air test"- Have no oxygen for 45 minutes and have good Oxygen levels
3. 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.



Both girls in cribs w/ Mom



Hanna has some work to do on #1- She's in training for Suck, swallow, breathe......

Right now she has #2 done....she can breathe fine with no O2 for 5-10 minutes, likely longer.

She is close on #3....She's only has a few "episodes" over the last 4 days and they seem to get more infrequent.

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.

So, all in all, Hanna is doing GREAT and has a road map to GET OUT OF THE NICU AND COME HOME!!!!!! YES! The Nurses are saying its likely she is coming home in 10-14 days!!!

Ashlyn:



Hi Ashlyn!

 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.

She's weighing in at 4lbs!

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.

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.

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.



Ashlyn with a mouthful of Boob!


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

All in all, Ashlyn is doing great!

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.

Thanks for the good wishes, prayers, thoughts, and good vibes....The girls are feeling the love!

Feeding & Growing

Things in the NICU continue to roll along-Most of the news is good.

Its been almost a full week since the last update, and perhaps surprisingly, there is not alot to report. No news is good news.

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.



Ashlyn with Bink



Here is where we stand:

Ashlyn:



Ashlyn bath



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.

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.

Other than that she is looking good!



Dad & Hanna



Hanna:

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!



Hanna



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.

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.

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!




The whole family!



Day 38 Momentum

The hockey playoffs are here, and there is little better than watching your team win incredibly exciting playoff games.



Blackhawks

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....
 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.

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.

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.....

Hanna:

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.

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....



Sara holding both girls for the first time!



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 all the time, 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.



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.

All in all, she is the team MVP....

Ashlyn:

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.



Ashlyn's staples...ouch



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.

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.



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....



Staples coming out



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!!!

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!




Rylan meets his sisters



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.

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.

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.



Holding hands...



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.

Just like in the womb, the girls nestled nearly skin to skin seems to make them very calm and happy.....Mom too!

The girls decided they liked it so much, they wanted to hold hands......So adorable!

I'm away on business this week...next update on Friday.

GO TINY MIGHTS!