Blended diet, week one.

So how is Ava’s new blended diet going so far?
Well, this happened:
Yes, that’s our ceiling, courtesy of Melissa Burton an incredibly kind friend who’s been helping with Ava’s new feeds.

You could say it’s been a smashing success:

Yes, that’s Gerber chicken and gravy, 2.5 ounce jar.
This one was my fault courtesy of someone besides Melissa.

Although I didn’t smash the baby food chicken jar on purpose, I’m still eager to get on with making our own blended food…once we get this new feeding routine down. We are still adjusting, and it made for a fairly laborous Labor Day weekend.

But more importantly, Ava has been a happy girl with her new diet. So far, she’s keep ALL of her food and water down since we started on Saturday, and her system seems to be taking it very well. She’s been sleeping better, too.

Here’s to less puree around the house tomorrow…

Baby steps with baby food

Sure, Ava has Angelman Syndrome and hearing loss, but our biggest challenge overall has been helping her to eat.

We’re almost a year into her feeding tube, and it’s been a good step forward. But after 4 months of reflux and trouble keeping her formula down, it’s time to step out behind the ease of canned Pediasure into the wide world of blended food.

I’m actually super excited and hopeful about this, because I’ve been less than thrilled with her 100% formula diet. I can’t wait to see how putting REAL food back in her system will help her health overall.

So, when I got the initial recipe we’re to try from her dietician today, I was disappointed. It’s all packaged baby food (even the meat) and other items that are less than the ideal menu of healthy fats, brain food and organic veggies I was dreaming of (and have been reading about). The recipe is designed to be easy to make, and I can appreciate that. But I’m willing to do the work of making my own food, so it’s not what I really want.

I feel like I have to stick with the recipe at first because I’m worried that if I go off on my own right away, the texture won’t be smooth and runny enough to get through her tube. And we see the value of working under our dietician’s supervision, too, especially while we transition her and learn.

So off I went to Publix. For the first time as a parent, I even bought this:

 

I felt like I was judging MYSELF while I put 6 jars of meat on the checkout conveyor belt. (If you’ve bought this for your children, I apologize for being judgy about canned baby meat. Apparently I ate it as a baby, and totally survived. It’s just not my thing now.)

Anyway, this recipe is not what I want, but alas, it’s the baby step I’m taking tonight. We’ll adjust the ingredients as soon as I figure out what I’m doing and we invest in a Vitamix to really blend it down right.

I thought it would be good to blog this so I can track her progress from this initial recipe toward healthy, homemade food and ultimately, I hope, to a ketogenic or low-glycemic index diet to help with her seizures and brain health.

And before you begin hating on our dietician: she told me she’s totally on board with us adjusting the ingredients over time. There are complex factors that play into the recipe for Ava and I agree with her that we can’t make all the changes we want at once. For now, here’s to a good start, and less upset tummy for our sweet girl.

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.