Life is better in photographs

Everyone’s been excited to see these cute pictures of Isaiah in his little outfits, showing off his chubby cheeks.

But the truth is, he’s had a bad week. Last weekend he got promoted to a less critical level of NICU care – all the way up to Pod 5 by yesterday, switched from cpap to a nasal canula (less oxygen) and they dropped his daily caffeine dose.

Apparently he didn’t like it.

He’s continued to have episodes where he forgets to breathe and has been dropping his heart rate too much.

So…now he’s been demoted back to Pod 3 (a half-step up from where we spent the first 6 weeks) and is back on the cpap and caffeine. (Insert joke about how of course my child can’t live without caffeine…)

The doctor said this is still within the range of normal for his age and he’s still on the small side for 34 weeks (now insert joke about how he’s my child). I know he seems so much bigger in the pictures, and he is, but that doesn’t mean he’s actually ahead of the curve. His doctor is also running some blood work to make sure he doesn’t have an infection just in case. He isn’t acting or sounding sick at all, but my other kids have been fighting a cold all week so I am a little paranoid about that, even though they’ve not been to the hospital since getting sick and I’ve scrubbed my arms practically to death this week when going to seen him.

And finally, we still don’t have a timeline for him coming home…and probably won’t for a while…but I’m guessing it will be at least 3-4 more weeks now, minimum. They aren’t going to send him home until he’s had a good run without breathing episodes and is off his oxygen and caffeine. Not that I even want him to come home till he’s got all that straight.

So there it is. I’m glad you all are encouraged and cheering him on from, well, all over the place. But please keep praying for the little guy and for us as we keep pushing through this. We are hopeful, but still have a ways to go and it’s, well, scary when the doctor calls to tell you your baby just turned blue, and you can’t get to the hospital for another 8 hours because of therapy appointments and work schedules.

Meanwhile, I sit at Amaya Papaya with one out of my 3 kids. Ava would love it here, by between her therapies and naps it almost never seems to work out for her. One day when I am struggling to handle all 3 of them at the same time I’ll have to remind myself that on days like this I wished I could just have them all in the same room.


I’ve been putting off new posts simply because there is too much to say. I just looked back to see that my last update was 3 weeks ago, and indeed a lot has happened.
Our preemie is now up to 4 lbs. 5 oz and has weaned way down on his oxygen support after getting a round of steroid treatment earlier this month. He gets to wear clothes and just today moved into a bassinet without a warmer. After 6 1/2 weeks, just yesterday he was promoted to a new room in Level 3 NICU (he’d been in Level 4 – the most critical care – up till then) and after I left this evening, heading to a new room in Level 2. 
He’s 33 weeks gestation now, so in about a week we’ll be able to try feeding him without his tube. He’s still at least a few weeks away from coming home, but we are at least beginning to see the light at the end of the tunnel. 

Tomorrow is Ava’s 2nd birthday, and the second child we’ll manage to celebrate while Isaiah is in the NICU. We managed to juggle her annual 24-hour EEG. It showed her seizure activity has picked up, which I anticipated, so we are adjusting her meds. So far she seems to be responding fine. 
Elijah’s been more eager to visit his brother lately so we try to take him when we can. He’s really sweet with him…and then loses interest in his hospital visit after about 15 minutes. 
We also closed on our old home a couple weeks ago and are slowly getting settled in our new place down the street. 

And with that, I sign off. Thanks for your encouragement, prayers, gifts, gift cards…all things that have helped make this time more livable and helped us to feel the community around us even when we can’t plan more than a day ahead or socialize much. We’re grateful for all of you who surround us. 

30 weeks

Life for us has been about as crazy as you might imagine over the past few weeks. I can hardly believe it’s been 3 1/2 weeks since Isaiah was born. Today he’s 30 weeks gestation – still 10 weeks away from his due date. But it sounds nice to be in the thirties at least. 
The part most of you want to know is that yes, overall he’s doing well. He still has trouble with his breathing and several other things could still go wrong and change the course of the long-term. But right now Isaiah’s doctors are positive and encouraging. They say his issues are really typical for a premie so young and that he should outgrow them. Last I checked his weight is up to 2 lbs. 13 ounces – about 10 ounces more than his birth weight. He takes a little over 3/4 an ounce of my milk at each feeding (still through a tube) and seems to poop every time I hold him. The nurses said he poops a LOT. Seems like a good thing. 
So many of you have been helping us…thank you for the gifts to help us with food, gas, valet parking (since it’s still hard for me to walk from the parking garage & back), new medical bills that have just started coming in, etc. We’ve also had some help with the kids and with moving. I know more of you would like to help, too, and honestly it’s just quite hard for me to get organized enough for more help. Those of you who pray, thank you for that. As well as Isaiah is doing, a number of things can still happen that affect his health and the length of his NICU stay. So, thanks for all the ways you’ve been holding us up (literally and metaphorically). 
My daily visits to the NICU take a lot of time and coordinating, but they are also feeling fairly routine. A lot of the valet, registration and security people recognize me now. There are a few other NICU families I see often and we ask about each other’s babies. Winnie Palmer used to seem like a big building, but seems to be shrinking all the time as I learn my way around. Now I see people’s badges and can guess what sort of thing might be happening based on their floor number.  
Every day I see moms being discharged with their newborns in the pickup area. At first I watched them with a fair bit of emotion…sadness, jealous, maybe a tinge of resentment, depending on the moment. Now, if I’m having a good day I just think it’s fun to watch. Sometimes a mom is holding twins; one day I saw 8 adults crowding around one newborn getting snugged in her car seat. And then, just when I think I’m getting used to it, I have a bad day and just try not to glare at the moms cruising out of the hospital with a chubby-looking 3-day-old.
Yesterday I was waiting outside near a mom who had a 9th floor badge on. That’s the floor where I stayed after Isaiah came. There’s no nursery on the 9th floor, so you only stay there if your baby is in the NICU or I suppose if something else has happened. An older woman, probably her own mother, was helping her, and celebratory balloons were attached to her going-home bags…but no baby. I wondered what happened, whether she had a NICU baby now too.
After I head home from my visits with Isaiah, I’m transported into a world of Elijah’s silliness, Ava’s sweetness (and the piles of paperwork and phone calls she requires on a regular basis…this month has been no exception), and a disaster of a house as we are in the midst of moving. (Actually, we currently have TWO messy houses…but let’s not dwell on that.) Craig reminds me there will be calmer days than this and that we’ll make it through.