August in our world

It’s so hot here. This afternoon I was wrestling with a car seat in an unshaded therapy office parking lot at 4pm…no rain today…and I felt like I was going to melt right onto the pavement.
I don’t know what that has to do with anything, but sometimes it’s just the first thing you think of when you live in Florida in August.
My recent lack of posts comes from my lack of free hands, free brain space, free time. I’ve been sharing a bit over at the Orlando City Moms Blog, but otherwise I’m usually holding Isaiah, waiting on hold with a therapy/medical/insurance person re: Ava, or being held captive by the endless wellspring of “why” questions from my inquisitive Elijah.
So…what to tell you? We are grateful to be all together as a family. Our home is full of life, full of noise. We do a LOT of dishes. A LOT of laundry. We are tired.

Isaiah is, overall, doing great. He’s growing. A little slowly, but he’s growing. I’ve had to set aside my more selfish wish to breastfeed him to do what he needs most. Drinking is a lot of work for his lungs and he still gets winded often when he eats. He burns fewer calories drinking bottles, and we’re able to boost it with a little Neosure and his daily multivitamin, too. So, I pump milk for him almost exclusively. It’s a lot of work, but it’s helping him grow right now and that’s more important than what I want.

Ava is growing like crazy. She’s learning some communication skills, standing with help, and overall making a lot of progress in therapy. She’s also been having issues with reflux and vomiting since May. That’s right, May. Three months. Poor girl. I hesitate to share this in the wide world of interwebs, but if you want to know how we’re doing right now, this is how we’re doing. We’re cleaning up a lot of Pediasure Peptide. Troubleshooting this has been slow, tedious and so far unsuccessful.

These may seem like weird things to tell you in an update, maybe TMI. But if you actually want to know how we’re doing right now (and if you’re still reading, I guess you do!), then this is how we’re doing. A lot of pumped milk and Pediasure Peptide, and a lot of related plastic parts that need cleaning and sanitizing on a very regular basis.
No, wait.
That’s not how we’re doing. That’s WHAT we’re doing.
Not the same.
HOW we are doing is something else. I’m not quite sure how I am, except to say I know God is here with us and all of the milk and Pediasure and plastic. He’s here and he cares about us. I don’t believe God’s job is to fix all my present problems or make my life easy. But he is with us. And sometimes now when I am cleaning up another stinky mess I am asking God to fill me up with more of himself. More, God. I need more of you right now because I don’t feel like I can do this one more time.
Answers do not abound in our life, but we are asking God for more of himself.

The day has come

Delivery date: March 7, 2016
Today’s date: June 6, 2016

13 weeks

91 days
2184 hours
Over 4.5 ponds gained
Oxygen, caffeine, tests, vaccines
Countless trips back and forth to Winnie Palmer for mommy and daddy…
And finally…
ISAIAH IS COMING HOME!!!
Thank you all so much for your prayers, words of encouragement, meals, help with the other kids, help around our house, help with our move, reading our posts,and overall, just loving on us! We thank God for all of you!

 

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.