NICU Day 22: Movin’ On Up

Happy Sunday to all of Sol’s friends! I don’t have much to report today other than the good news that Sol had a 25ml (!!) bottle this morning and has been given the go ahead to have four 20ml bottles in 24 hours. The rounding doctor was so pleased with the baby steps we are making with eating and is writing all orders to make sure we continue this progress. I fed Sol a 20ml bottle at 3pm today, and he loved it so much he didn’t want to take a break to burp. (Don’t worry: we got two good burps in!) He is an eating champ.

To make up for my shortage of words today – and photos yesterday – I am sharing lots of photos:

Hanging in the rockaRoo:
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Showing off his handsome face before bath time:
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Post-bath time pose:
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Snuggling with Mom:
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Seriously tuckered out:
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Settling in for nap time:
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Hawaiian punch:
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Waking up is tiring stuff:
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NICU Day 21: Who’s Hungry?

I am grinning from ear to ear tonight. Only a few days ago, I watched as Sol ate a few drops of milk from a syringe, thinking it might be a while until we’d be able to move to a bottle, if ever. Today, he gobbled up 10ml of milk from a bottle – and when he finished, he looked for more.

The doctors are now allowing us to feed Sol two 10ml bottles during each 12 hour shift and, if the first 24 hours goes well, we can talk about increasing that amount. Sol is getting a total of 60ml of milk every 3 hours, so we still have a good amount to go before we are completely off the feeding tube, but he seems ready for the challenge now. I’m so in awe of this little man! Now the hurdle for me is to get through each feeding NOT overthinking every little thing. After getting the sense that he wouldn’t be able to drink from a bottle and learning baby stress cues, I seem to think there is doom and gloom behind every pause, cough, hiccup, or eye raise. During today’s feeding, one pause ended up just being (major) gas, which gave me and Mom (Nana!) a much needed laugh.

Mike and I also gave Sol a bath during tonight’s visit – a first for us! The nurse patiently walked us through it and Sol actually seemed to like getting clean, after only one or two initial cries. Good man!

Unfortunately, I didn’t take very many photos today. Mike and Mom did, so I will post those tomorrow after I get my hands on them. In the meantime, here’s a photo and video of Sol in the rockaRoo, his new favorite thing:

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NICU Day 20: NICU Nurses Are Awesome!

I love working in the NICU because I get to see miracles happen all the time.

-A NICU nurse

It takes a special type of person to work in the NICU. I’ve never seen stronger, smarter, and more compassionate people than I have in the NICU in the past 3 weeks. The doctors are amazing, yes, but the nurses who are responsible for the babies 24 hours a day, working on 12 hour shifts, are extraordinary. They become advocates for their designated babies, not only keeping a watchful eye on them round the clock, but also sticking up for them when needed, helping guide the doctors’ recommendations for daily care. I am completely in awe of these nurses and forever grateful for their care of Sol.

Sol has won over many of the NICU nurses and we always see new additions to his crib area: a sign for his bin of books, a cute Halloween photo and more. As we visit with him, many stop by to comment on how well he is looking. This always boosts my optimism: it’s one thing for his Mom to notice how good he looks, it’s another when it comes from someone else!

More importantly, we had a huge step in feeding, thanks to Judy, the nurse designated to Sol today. She sat next to me as we tried giving him his first bottle since he was at Sibley – three long weeks ago. I was a bit nervous to give it to him, worried that it might go down the wrong tube and make him afraid of it. Judy coached me through it and at our 9am feeding, Sol had 5ml by bottle with a big burp in the middle. A success! We tried again at noon and got 8ml down, again with a good burp.

These are baby steps in terms of the amounts that he should consume by bottle, but huge in terms of practicing feeding. Practice makes perfect, right? We got the go ahead to continue practicing over the weekend, so we’ll take it nice and slow and see how we do.

Another great day at the NICU!

Getting a pep talk from Nana:IMG_1160.JPG

Dad time: IMG_1163.JPG

Snazzy new swaddle sleep sack: IMG_1168.JPG

Snuggling with Mom:IMG_1170.JPG

NICU Day 19: Progress with Feeding!

We are going to figure out this feeding thing, I just know it. Today, Melissa brought a different, slow flow nipple to help with our feeding lesson, and Sol seemed to be much more comfortable with it, drinking 5ml of his lunch by mouth. He lost a bit of confidence towards the end of our session with Melissa so his oxygen levels dropped briefly, but overall I’m really pleased as this is the most he’s taken by mouth comfortably. I feel that he’ll only gain confidence with more practice. Fingers crossed.

Sol during his feeding session:
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Two hours after our feeding lesson, we had our first meeting with a physical therapist, Donna. She taught me and Mike some infant massage techniques, which will help soothe Sol during the remainder of his NICU stay as well as when he comes home. He relaxed immediately when Donna massaged his back – we are clearly on our way to having one spoiled little man! Afterwards, she sat and observed how Sol moved on his own. Sol impressed her with his bicycle kicks, moving all by himself with no prompts. Donna said that, during an earlier evaluation, she’d noticed his left side moving much more slowly than his right – not today, he was now showing equal strength in both sides. Go Sol!

Other than our two exciting therapy sessions, we had a fairly uneventful day. It’s now been about 36 hours since his last dose of Phenobarbital, but it takes a while to fully leave the body, so we’re just observing how he does over the next couple of days. From the doctors rounds today, it sounds like we’ll start having discussions later next week about getting Sol home. Until then, it’s all about practicing feedings and movements so we can continue to get stronger each day.

Hanging with Mom:
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Post-lunch snooze:
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Snuggling close:
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Mr. Curious:
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NICU Day 18: Step Down NICU

Great news: Sol has graduated to Step Down NICU. This means that he’s now a “less urgent” baby. Woo hoo! Unfortunately, this also means we are moving on from the neonatologist who I really admire, but we’ve already worked with his new doctor and know she’s stellar.

Sol received his final dose of Phenobarb today. We are keeping all fingers and toes crossed over the next few days as the drug completely leaves his system. As long as he remains seizure-free, we’ll really be able to focus on the next milestones: feeding and bidding adieu to oxygen support – the latter happening as early as tomorrow. Sol is also going up on his feeds – from 55ml/3 hours to 60ml/3 hours. He’s still on the small side, so we’re trying to fatten him up a bit.

We had a great visit today. We started by reading Hairy Maclary (a new book!) and then we had some serious snuggle time. We attempted some OT time with Michelle, though Sol was a little too grumpy to accomplish much. Our feeding session with Melissa was productive: although Solomon still has some issues with the bottle, he happily had about 5ml from a syringe. This showed us that he can be fed by mouth, to some extent. The hold up with the bottle seems to be a sluggish swallow reflex, which could speed up once the Phenobarb is completely out of his system. Hopefully the bottle feeding will improve over the next few days.

Hanging with Dad IMG_1133.JPG

Snoozing IMG_1139.JPG

Snuggling with Mom IMG_1142.JPG

Time with Papa! IMG_1148.JPG