Home stretch


It’s been a busy week here at the hospital (and of course, at the Slezak house, too). We don’t have a discharge date and probably won’t until its just about to happen, but we are on the home stretch.

Isaiah’s been eating on his own since he last pulled out his feeding tube Saturday, and that set in motion a bunch of pre-discharge activities. This week he’s gotten his vaccinations done, eyes and ears checked, a PT evaluation, and is now back off the oxygen. He still needs to pass a car seat test, but we have gotten most things checked off the list in the pats few days. His last hurdle will be to start gaining weight well now that he’s eating on his own. He’s actually lost a bit since going off the tube…but it has been a busy week for his little body. Once he can show the docs he can eat well enough to keep gaining, they’ll let him come home. 
All this has meant a sometimes-revolving door of conversations with NICU team members. A lot of it is straightforward. Some is overwhelming, some discouraging, some exciting. Just riding along on the roller coaster this week. Isaiah will be automatically eligible for early intervention because of his birth weight, so soon we will have two kiddos getting therapies from Early Steps. At least I know how to navigate their system and our insurance now (although I don’t know if they’ll cover it). Ava’s nearly intervention coordinator already knows the baby will be coming their way soon, too, and will be able to help expedite things. But unfortunately, it sounds like for a little longer we’ll be trading more play date time for therapy sessions. Boo. 😦

I do think his discharge will happen very soon, but we may not know until it’s just about to happen. (So don’t say I didn’t tell you!) It feels a little like waiting to go into labor. He’s 39 weeks today, so I guess that actually sounds about right. 😊 

An update

At the Ronald MacDonald House letting Elijah play for a few minutes before we go back to see Isaiah. 
My updates this week have been in brief picture posts, so here’s a little more explanation. 
His doctor took off his oxygen and cut his caffeine dose on Tuesday, but he was dipping too much overnight and the nasal canula went back on.
They did a lung study and said it looked good, so he probably just needs more time. Dr. Kahn said he will likely still go home close to Memorial Day, but there’s a chance it will be WITH the oxygen for a few weeks. Depends how he responds next time they try to wean him. They won’t keep him in the hospital if all he needs is a little oxygen.
I am dreading the idea of bringing him home with medical equipment. It’s a simple setup…just the idea of more things to learn, paperwork & authorizations to deal with, stuff to pack if we try to leave the house…ugh. 
SO hopefully we won’t have to! It’s possible after another week or two he’ll be just fine without it. Either way, we won’t be at Winnie Palmer too much longer.
Isaiah’s other job before we can go home is to be fully feeding with bottles and/or breastfeeding – no feeding tube. He’s getting this…slowly. It’s still a lot of work for him. He’s drinking some on his own but still has a ways to go. 
So, we are nearing the end of our NICU stay and I’m excited about that, but I wouldn’t say it feels like “light at the end of the tunnel.” Coming home will be swapping out one set of challenges for another – but we will get to be together as a family much more, and that part will be amazingly good. 
Meanwhile Ava is still adjusting to new seizure meds. Seems to be going okay so far, but she is more hyperactive at night lately than ever…typically doesn’t go to bed till 10:30pm…and it makes for long evenings. Soon 2/3 of the kids will be partying late into the night! Maybe they can entertain each other! If only they could feed themselves… 🙂
My mom is leaving for a break tomorrow. She would’ve stayed on even now if we’d asked, but she has been tirelessly helping us since the end of February, and we want her to get some rest. We are beyond thankful for all of her help. 

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.

April

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. 

One week later.

Isaiah is a week old today. 
This morning he got a brain ultrasound, something preemies routinely get at the one-week mark because there is often bleeding on the brain in the first week, which can lead to longer-term damage. 
We have a follow-up meeting  with Isaiah’s doctor to get the results Wednesday. Our case worker is also scheduled to come, and I told Craig last night I don’t look forward to meetings where case workers routinely show up “just in case” it’s bad news…especially when the bad news could be brain damage. 
Well, Dr. Kahn saw Craig in the hallway this morning and stopped him to tell him the brain scan is clear! Little guy still has a long way to go, but this was great news and helped me feel more hopeful about how things might go. 
They’ve been weaning him onto my milk via a tiny feeding tube…so that makes two of my three kids eating via tubes. Since he’s tolerating my milk well, they were able to avoid putting in a picc line and took out his IV fluids today too. (And Ava’s growing like crazy with her feeding tube in place…so you won’t  hear my complain for now about all this.)
Craig & I saw my doctor this morning, too. He talked to us a little more in-depth about what happened. I had a placental abruption – the placenta suddenly separates from the wall of the uterus (Sorry, I know this is all kind of gross – but I can’t find another way to explain what happened.). Apparently it first happened early in the morning, but since the bleeding stopped temporarily we were able to make it to the hospital. Once the bleeding picked up again though, Isaiah and I were both in danger and they rushed me in for the c-section within minutes. My doctor told me they ended up giving me 4 units of blood. 
And here we are one week later. I get to hold him once a day for about an hour. It doesn’t feel like nearly enough, and I hate leaving him, but I’m thankful that we are both at least here for the ride.