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!