Monday, December 16, 2013

First day home -- a preemie's adjustment to life away from the NICU

Once again the text from our care page a year ago gives a much better view of our lives a year ago than I could recreate on my own. So, take a peek with me into our life a year ago, will you?

Life at home

Written Dec 14, 2012 1:29pm by Laura M

This is particularly long.  I have a few free moments while Jonathan is lounging/napping under the Christmas tree in a bassinet made by friends.  The girls and Steve are at church.  J won't be able to join them until cold and flu season is over.  So, while the house is quiet I'll update you.  And since I don't know what you wonder, I'll spill out as much as I can.  Feel free to skip around.

1 - Jonathan's reaction to home life
2 - Are you sleeping?
3 - What is Jonathan like?
4 - What is coming down the road? (surgeries and follow up appointments)
5 - How are the girls doing?

1. At home

Jonathan spent most of the day Thursday and Friday awake, trying to figure out this new world.  He slept fine Thursday night, but then Friday refused to nap.  It seemed that part of the problem was that he wasn't quite sure WHERE to nap.  So many choices, and none of them had his favorite mobile (a hospital-owned one).  Where were the safe places for sleep?  Plus, where was the dinging and the muted crying from next door and the voices of the doctors and the nurses?  Things were too strange.  Too silent. He worked himself into a cranky fit -- the first time I've seen that -- and then finally found the one place in the whole house that was familiar to him -- my arms.  I put him in the moby-style wrap I'd made for Mimi (don't worry, it's not pink) and he was asleep within minutes.  I wore him for most of the rest of the day, grateful that he didn't have wires on him any more.  Longest kangaroo care time ever.
After that, he got used to the sounds of our house.  He has slept soundly for the last day and a half. Last night he even slept through two of his care times.  (Unfortunately, we still have to get up and feed him through a tube.  He is too little to sleep through the night without nutrition.)

We are very grateful for the feeding tube.  He's still only taking half of his feeds, at best, by bottle, before he'll tucker out or start breathing too fast or choking.  This little tube of plastic saves us the common worries about whether or not he is getting enough to eat.

2. Are you sleeping?

Yes.  Some.  Thanks to a fantastic partner and a freezer full of milk, we are doing well.  We start at 8, after the girls go to bed, and switch off who is in charge for the 11, 2, and 5 am feedings.  If we start sleeping at 8 or 9 pm, by 7 am we've gotten around six to seven hours of sleep, and hopefully at least five of those hours have been uninterrupted.  Jonathan DOES know the difference between night and day -- although he seems to think that "night" begins at 11 pm.  This is likely our fault, as we were often at the hospital until 10:30 pm or so.  Who wouldn't want to stay up to spend as much time as possible with mom and dad?  He's also most alert during the 9 am - 12 am time slot -- the morning times that Steve would often visit three times a week.

3. What is Jonathan like? 

Very content.  He cries at gas bubbles, a hungry belly, dirty diapers, and when he is too hot or cold -- much like most babies. He's more likely than most to choke on his food, so we have to be careful.  He's very alert when he's awake.  He likes to look into our eyes -- something that three short months ago I wasn't sure he'd ever be able to do.  He maintains long eye contact with us, closes his eyelids briefly in response to questions, looks like he has something to tell us, and is very patient with us once he knows we are working on meeting his needs.  (Unless he's REALLY REALLY hungry -- in which case the cries come out.  We waited for months to hear those cries, though, so we look at the cry as a sign of accomplishment.  As his visiting nurse said yesterday, "look at him exercising those lungs!")

Jonathan is on track for his adjusted age (1 month).  He can turn his head from side to side while lying on his belly; although like most preemies he is more likely to lift his hind legs than his head during tummy time.  He has, as we've noted, smiled at us on a few occasions.  He seems just as startled as we are delighted by these few real smiles.  He grasps his hands together from time to time, and is (as his occupational therapist noted) "the best non-nutritive (pacifier) sucker in the NICU."  Quite the accomplishment for a 23 weeker!  He can keep his gumdrop-style pacifier in better than my full term babies ever could.

4.  What's down the road?

Jonathan will be followed by nine different offices.  His pediatrician, a visiting nurse, a urologist, a surgeon, an eye doctor, a developmental specialist, an early-intervention clinic, an occupational/speech therapist (to work on feeding issues), and I will be visited by someone from a NICU follow up program.  I think that's it.  These folks, in general, want to see him/us somewhere between once a week and once a month for the first several months.

Jonathan likely has two more surgeries to go.  One for an incisional hernia near his tummy surgery site.  Umbilical hernias are common for babies and often self-resolve.  Incisional hernias are a rare thing -- his pediatrician says it is the first one he's seen -- but at the moment it is not hurting him.  It stands a SMALL chance of getting better on its own (but so far it has only grown bigger) and the surgeons want to wait as long as possible to repair it, as the bigger a baby is, the less difficult the surgery is for them.  We can see things move through his belly -- it is very odd.

Closer to one year of age he will also will have to have one small and common procedure due to a very mild birth defect that is common in males, and more common in preemie boys.  This should not be a big deal, but is one more time down the road when he'll have to be in surgery.

So we aren't out of the woods for surgeries yet, and we are swamped with appointments, but the road ahead looks a lot less scary.

5. How are the girls doing?

They are delighted to have their brother home.  Ella loves that she can kiss his head whenever she wants to. Mimi has had to keep her distance because of an illness.  She's not been herself lately because of her broken collar bone as well.  We hope that both those issues resolve soon enough and we can get a picture of all the siblings together.

It is hard to know the balance to walk between protecting Jonathan from illness and allowing his sisters to interact with him normally.  There is a lot of hand washing and hand sanitizer in our house (or "handzitizer" as our girls call it).  The girls are also a lot happier now that we are ALL in the same house together in the evenings.

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