The Beginning of the End



Life is good.



Every year in college, at the beginning of the spring semester my sorority would do a "Beginning of the End" Dinner to honor the graduating seniors.  It was a time for each senior to reflect on their college and sorority experience, and to get excited about not only the last semester of school, but for what is to come.  I remember feeling a combination of happy/sad/anxious/ excited/loved during that time.

Kinda like I feel these days since Andrew moved to the step-down room in the NICU.  This is the beginning of the end of our NICU journey.

Life in "Room 200" is going well, and the reality that Andrew is coming home soon sets in more and more each day.  "When?" you may ask.  Well, that is still up to him really, but we speculate that it could be as soon as next week or the week following if things continue to progress like they've been. (GULP!  EEEK!  YAY!)

Exciting things are happening:

I can do it!



• They moved him down to the low-flow nasal cannula on Sat, and he's requiring just a fraction of the oxygen he needed before.  The amount he's on now (between .1 and .05 liters/min) is minimal, and he could go home on it if he needs to.  We're still hoping he gets off it completely, but if he is not for his homecoming, we expect he'd only be on it for a short while at home.
• For the past two days, he's taking his entire feed, every feed, by bottle!  Amazing, considering two weeks ago  he'd never even nippled a bottle before.  He has been getting pretty tired though, and his respiratory rate is a bit higher the past few days, so the doctor will monitor to ensure he is gaining weight and not burning too many calories eating.  He needs to be taking all feeds by bottle and consistently gaining weight to go home.
• He is having less desats (lowering of oxygen level in bloodstream), although he's had a few spells (bigger desats and/or heart rate drops), which we think are reflux related.  They increased his Previcid dose to help with the reflux, and he will continue to take this med at home.  The spells need to stop as well to go home.
• They began his 2-month immunizations on Monday, and he'll get one a day for about a week.  He'll catch up on a modified schedule once he gets home with his pediatrician.
• J and I took an infant CPR class (which we hope we never, never need to use) and have been bombarded with information and pamphlets from the nurses about taking him home.

On Sat evening, J and I took the night off from visiting the NICU and spent hours putting together all the "stuff" that we'll need when Andrew gets home.  The swing, bouncy chair, pack and play, stroller, activity mat are all set and ready to go.  (Fisher Price directions could use some help in some cases!)  New clothes were sorted, washed, and put away.  Our house looks like a Babies-R-Us catalog.  This is getting real!



Who needs toys or other stuff?

 

Give me Mommy or Daddy's arms and I'm all set!

We do have some (ok - a lot!) of anxiety about bringing him home.  Our safety net of 24/7 care will be gone, and while we know they won't send him home until they know he is ready, it is still nerve racking to know we will be 100% responsible for him.  He's been through so much, and it's hard not to think of him as a fragile, sick baby even though he is resilient and doing so well.  And sleep, what about sleep?!?!  All the other new parent fears are creeping into our minds too so I think the first days/weeks will be pretty stressful.  Also, as much as we won't miss our twice daily visits (and drive) to the NICU, we are going to miss the family of nurses and friends that we've made during our 3.5 months there.  Once we get home, we will be on modified lock-down for the winter months since his risk of rehospitalization is high if he gets a cold or the flu. 

But...we are so excited to finally have him come home with us, and to really begin our lives together as a family.  My due date is next Wednesday, October 20 and we are so blessed that his homecoming will be close to that date.  We are thankful every day that he is here with us, and that he is doing so well.  Unfortunately, we know others who are not so lucky.  Andrew's birth and our NICU experience has been long, painful, scary, and surreal at times.  We will never forget it.  But, we are going to bring our miracle boy home.  We are blessed, and face this "Beginning of the End" with open arms and happy hearts.