Stuck in a holding pattern...*Adalyn Update 4/5*

DrRx

Hello ladies!

Well, Adalyn had to go up to 3L high-flow a few days ago and has been stuck there.  She was needing more oxygen on the 1.5 L (between 40 and 50%), so they increased her flow.  She has been doing much better, usually between 30 to 35%, and has even dipped her toes into the 20s a few times.  

It is just so frustrating, because I feel like just when we're close enough to try her on a bottle, she needs to go back up on her flow and it's pushed back another week or more.  I feel like we're in a perpetual holding pattern, where she's not really getting worse, but not really improving either. I know that she will try a bottle eventually--she won't be on the feeding tube forever.  DH and I were joking that sometimes it feels like she's just going to grow up in the NICU, go to school, fall in love, and get married in the NICU. 

On Tuesday the MD was worried about the fact that she had to go up to the 3L and still had some retractions and that she could possibly have an infection.  So, she ordered a chest x-ray, blood work, and a blood culture.  Monday afternoon I called every 2 hours to see what the results were of the blood work and the chest x-ray.  Luckily, the bloodwork and the chest xray didn't point to any sign of infection.  The bloodwork did show that her hematocrit was a little low at 28, and that Adalyn may need a blood transfusion next week if she can't bring it up on her own.  The chest xray showed a little bit of fluid in her lungs, which the MD said was not unexpected with what she would expect with her lung disease.  So, yesterday Adalyn got a dose of lasix (a diuretic), and it really seemed to help with her effort of breathing.  DH went to donate blood today (his first eligible date) so that in case she needs to be transfused, they will have his blood available to use. 

They also decided to push back her vaccines until the blood cultures come back, just in case there is some sort of infection, etc.  Her MD today said that if they come back negative, she will get the vaccines starting either tomorrow or Saturday. 

Adalyn is now up to 4 pounds 8 ounces (2.05kg) and is really starting to act more and more like a real baby! Well, she's always been a real baby, but she's definitely more and more alert and making a TON of facial expressions!  She smiles, although I'm sure that it's just her making her face that way, but she does it when she's looking at us, etc.  I don't know if it is involuntary or not, but she sure does have a gorgeous smile! I haven't really been able to capture it well with the camera, but I'm sure that I will.  She also stays awake for an hour or more, eyes wide open, when we're there for her Hands On time and start her feeds.  When DH plays the ukelele, she will move her head towards him and just stares! He hasn't been able to play it for her because he's been working, but he's off today so he's going to play it for her tonight.  

My mom got to hold Adalyn for the first time the other day, and I could tell that she was just in heaven.  She held her when I went down to get my sister who came to visit.  To get to the NICU, a parent with an armband has to be present for them to get their visitor tag and go up the elevator.  It's like I give them special VIP access! While my mom was holding her, she pretty much checked out of the conversation and just absorbed Adalyn.

Her nurse on Tuesday had decorated a pink tub with stickers, etc, with Adalyn's Hot Tub written on it! We put the J&J's baby soap in there, and with one of the oxygen hoses we made Adalyn get her first Jacuzzi bubble bath! We put bubbles on her head, and she just had this look of WTF on her face the whole time! She didn't hate it, but didn't seem to love it either. No pics of this since we had the nurse videotape it.  However, it really was a fun time!  

This same nurse made footprints and handprints of Adalyn and decorated a placard with them and stickers! She also gave us some extra sheets to use at home.  It's nice to have nurses who are not only good in what they do, but who take a real joy in taking care of their patients.  

Here's a picture of Adalyn next to the ukelele.  I think that it gives you a sense of how small she still is! 

kelkel09

I know it is frustrating...the NICU is a rollercoaster ride. Everytime you move forward you feel like you take a step back. Just hang in there...she will get there!

 Such a great picture!!

daphne814

I hear you on the holding pattern, I feel like we've been stuck in one lately, too.  It sounds like your girl has made some amazing progress, though, and that's so cute that's she's starting to smile, involuntary or not.   I can't wait to get to that point!  And I love the picture, she's adorable.

cutcopypaste

It is so frustrating and I'm sorry you are going through this! One thing I always had the doctors telling me was "she will not be 21 years old and still here in an isolette". Some days it feels like that but she will be home and she will still be a baby! I would always be like why isn't she growing out of this yet? Or why isn't she doing this yet? And they would tell me she just needs time. Time really did solve everything. I would always be surprised by it too, like it would happen in an instant. All of a sudden she will kick that cannula and you will be so proud! Hang in there mama, she's getting there! The end sometimes was harder than the beginning for me because everything felt like a setback. But it will come together and you will have your girl home with you soon!

DenaRenee78

She is too cute!     She will come around. My son was born at 30 weeks and we too thought he was going to be in there forever! He did have a feeding tube for a LONG time though but he had reflux and swallowing issues. I can tell you there is light at the end of the tunnel though .. my son is 8 yrs old now and a very healthy active boy!