Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Friday, February 18, 2011

Care conference

Today was the scheduled care conference.  Jason and I met with the attending physician, Dr. Rosance, Nurse Megan (who came in on her day off after having worked the night shift), a social worker, a developmental therapist, a lactation consultant, and the discharge coordinator.  I came in with an entire page full of questions and got answers to all of them.  Granted, some were not the answers I wanted to hear, but at least we have an idea of where we stand on things and where they want to go from here to get Cayden home.

Things we pretty much don't have to lose sleep over anymore: 
  • His heart issues (PDA - patent ductus arteriosis and ASD - atrial septal defect).  They're not likely to cause any problems and should eventually or may already have resolved on their own. 
  • The brain issue (IVH - intraventricular hemorrhage).  He is past the point of being at risk for this. 
  • His umbilical hernia.  Should resolve on its own.
Things that aren't life threatening but will still require some sort of follow up and treatment: 
  • His inguinal hernia.  Will most likely require surgery at some point to fix, but it's a very common procedure.  Depending on the severity, will be repaired a few days before discharge or later, around 4-6 months of age.
  • His eyes.  They're not yet fully developed, so he will have to be examined for ROP (retinopathy of prematurity) periodically until they are.  He may end up having to wear glasses at an early age, but hopefully, that will be the only consequence.  With some luck, his vision won't be affected at all.
  • His lung issues.  He does have chronic lung disease and BPD (bronchopulmonary displasia) but it's a mild form.  The doctor used the word "amazing" to describe how well he's done and the condition he's in given how severely premature he was.  Long term, this diagnosis means he'll be more susceptible to infections, and when he does get sick, it may be more severe, so we'll have to be extra vigilant about germs he's exposed to for the first year (until his immune system matures enough to cope.)
When he comes home, he will almost certainly be on oxygen.  Sounds like the ballpark estimate for how long he would need to be on it is somewhere between 6 months to a year.  (Of course, they're very hesitant about giving you time frames for all of these things.  I really had to pressure them to give me some idea.)

Unfortunately, he will have to be protected against RSV with the Synagis vaccine again next fall/winter.  Again, we just need him to get through this first year until his immune system has a chance to mature to be able to fight off infections as well as "normal" babies.

The good news:
  • He's gaining ground on his growth curve.  His weight is up from the low point of 10th percentile to around the 25th percentile.  His head circumference is charting a similar pattern.
  • He has no vital sign instability.  When he has oxygen desaturations and brady (drop in heart rate) episodes, they're directly related to an episode of reflux.
The plan/what's next:
  • Early next week, the developmental therapist and speech therapist will do another nippling evaluation to decide if the Simply Thick additive is still appropriate.  They may adjust the concentration or nipple size to see if it helps decrease or eliminate his episodes of painful reflux after feeding.
  • They're going to do a trial run over a 12 hour period to let him determine when and how much he wants to eat.  The thinking here is that maybe his reflux is being caused by being fed too frequently and that if he is given the opportunity to eat when he says he's hungry, then be allowed to take as much as he wants, he will be able to sleep longer and more comfortably.
  • Depending on the outcome of the above two things, they may end up trying him on Prevacid or Zantac to help with his reflux.
  • Continue breast feeding once a day if possible
My biggest question was when are we going to be able to bring Cayden home??!  Again, they won't say for sure, but my prodding and prying yielded me a ball park range of anywhere between a couple weeks to a couple months from now.  I honestly think a couple weeks is unlikely, but there is a slim chance it could happen.  No one, including me, wants him to come home before he's ready, so I'm trying hard to reconcile what my heart wants with what my head knows is best.

Finally, last night, his weight was up to 6 lbs. 6.9 oz. but tonight he lost about half an ounce.

1 comment:

~THE JENSEN FAMILY~ said...

DO YOU REALIZE HOW AMAZING THIS LITTLE MAN IS? YOU GUYS ARE SO SO LUCKY AND HE IS A MIRACLE AND GOD HAS HIM HERE FOR A REASON. BE PATIENT..... IT IS SO HARD.... I CAN'T IMAGINE WHAT YOU ARE GOING THROUGH.... AT ALL... BUT HE IS HERE AND HE IS SUCH A FIGHTER AND YOU ARE TOO!!!! KEEP GOING!!!! YOU HAVE A LOT OF PEOPLE ROOTING FOR YOU!!!!!