Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Friday, February 1, 2013

Flashback Friday: Just Breathe

          You know when someone is pregnant and everyone asks, "Are you having a boy or a girl?"  And often the answer is, "It doesn't matter, as long as he or she is healthy."  Yeah, so that phrase has a whole new meaning for me now.  We knew we were having a boy at about 20 weeks, so I never actually said that phrase.  And, if I am ever pregnant again, I won't say it.  Because, really, what would you do if "healthy" doesn't happen or isn't an option?  You do what we did.  You adjust your expectations and watch your little 2 pound baby struggle and fight to breathe for months.  You learn that respiratory status can change in an instant...from collapsed lungs to breathing room air.  You won't recognize  your baby's cry at first, because he was unable to cry with a tube down his throat for 11 days and you hadn't heard it yet.  (While I didn't recognize his cry at first, it now makes me melt, every time.  Unless, of course, it's that fake toddler whine!)  You wait for many months to really see what your son looks like without tubes and tapes covering his tiny face.  You research to find the best "stickies" to keep his nasal cannula on without hurting his tender little cheeks. You watch his  face and chest for any signs of respiratory distress....daily...even 2 years later.  You fight with medical supply companies and pharmaceutical companies to get the equipment and medications your child needs.   You take your 10 month old into the laundry room and cry tears of joy on the day he no longer needs 24-hour O2 support, because before then his 02 tubing only allowed you to take him between the living room and kitchen.   You find yourself explaining that even though your little one is cute and looks "fine," his lungs are NOT so cute or fine and need to be protected.  And you struggle through the depressing effects of isolation during RSV/Flu season while protecting your little one from more lung damage or another hospital stay.  And you are so, so grateful for every breath your child takes.  You also come to the realization that, while watching your baby breathe, it is possible to hold your own mama breath for over 2 years. 
          I had no idea how important lung development was and as I've mentioned before, I assumed preemies were just small and needed to gain weight. This image expresses lung development very well:
Premature birth interrupts the final stages of normal lung development. If lungs were to be represented as an upside-down tree, the lungs of a full-term baby would be fully branched with many leaves. The lungs of a premature baby would look like a simple tree or sapling and would be very rudimentary, with only a few branches and leaves. Since the body counts on those branches to breathe, a simple tree cannot function as well as a fully developed tree. – Alan Cohen, MD, FAAP, FCCP
Pediatric Pulmonologist
© 2003 MedImmune, Inc.

Jack needed to do so much more than just gain weight, although that was always a major concern and still is.  I don't remember the doctor's name or even his specialty, but in the days before Jack was delivered, he asked if we knew what we were having (boy or girl)?  As soon I said boy, his face changed from neutral to distressed.  I had no clue why he suddenly seemed more concerned, but quickly learned after Jack was born that little boys, specifically white boys, don't do so well in the lung development area.  There's even an unofficial diagnosis, "wimpy white boy syndrome":  "This is a tendency for white males to develop more slowly and have longer stays in the NICU. This means that their lungs are slower to develop and like all premature babies, they could possibly suffer life long effects from being born prematurely."  (from Weak White Males and the Difference Race Makes in Preemies).
       So, often in the NICU, the typical baby milestones are replaced by "medical milestones" that are often just as celebratory!   For our Flashback Friday, I'll share a few of Jack's respiratory triumphs.
Jack leaving the delivery room on his way to the NICU, already intubated.  (We won't discuss the fact that this picture was taken by my sister, as they paused to show him to family...yet I hadn't seen him!)

Jack stayed intubated, on a regular ventilator and an oscillator, for 11 days.   Being on the vent saved his life, but also damaged his premature lungs even more, contributing to his BPD (Bronchopulmonary Dysplasia).  

Jack on extubation day (11 days old)!  He seemed so exhausted and sick, I didn't believe he would be able to stay off the vent for long.  But, he proved us wrong!
Jack spent over 2 months on Si-Pap and then C-Pap, so his little face and head were covered by tubes, tape, and a mask for a long time.  

Jack had two short (less than 24 hours) trials on Vapotherm (with nasal cannula);  we were so overjoyed to finally see his face!  Unfortunately, he was back on C-Pap for a long while.   
Still on C-Pap at 2 months old.

Off C-Pap and on Vapotherm thanks to a round of super steroids.  
Finally, at home on 24-hour 02 support (using a concentrator) until 9.5 months old.  Jack was also attached to a pulse-ox machine to measure his O2 sats (saturations).  He was on two diuretics to keep excess fluid off his lungs and on daily breathing treatments.  During his first 2 winters, he also received 15 shots total of Synagis to protect him from severe RSV.
At 10 months old, no tubes or tape or O2 support.  Just twice daily breathing treatments and limited exposure to give those fragile, scarred lungs the best chance to heal and grow! 
Two years old, running and playing outside in the sun or snow, not letting those premature lungs stop him!

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