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!