My favorite part of ‘blogging’ is providing you with insight into our lives, sharing our moments of joy and disappointment alike and going beyond the explanations in revealing our hearts, attitudes and emotions of the journey. I don’t really enjoy the rudimentary updates (especially when I’m so far behind), but there’s so much to update you on and I have no emotional energy left for revealing my heart at the moment. If I learned anything during our time in the NICU (nearly 2 years ago!), it’s that our loving prayer warriors deserve even the most basic of updates, so here it is, sans color commentary.
Fun stuff first, with lots of videos in the links:
- Struthers is STANDING! He’s quite unsure about walking but has taken just a couple timid steps. That perfectionist personality still shows in that I’m quite sure he will just wait until he can do it perfectly and practically run before he reveals to us that he can walk.
- Lots of words and even phrases have made it into Struthers’ vocabulary, but his favorite is still one of his firsts–Quack! This video of going to the ‘duck park’ is adorable, and I’ll let you bask in that a few moments before I point out to you what that video makes painfully obvious to me.
- Struthers still ADORES and responds so well to music! This video shows him “Row, Row, Rowing” (ie-home PT for hip flexors). Be sure to watch to the end and catch his “Merrily, Merrily, Merrily” attempt!
- Video Evidence: We’ve been getting out a bit more, and Struthers LOVES anything outdoors, shopping, dancing, swimming, teasing us about walking, reading (I only have a million videos of this), cheering for himself when he stands, pushing his own O2 around and taking his own vitals. What can I say, the boy knows nothing else and loves life! The objects of his current affections are tractors, cars, bikes (particularly those with trailors attached in which he rides), rocks, clouds, swings, ducks, backpacks (good thing since he will soon be carting his own O2 and feeding pump!), the preppy clothes his Mommy dresses him in :), anything with wheels, and anyone who smiles at him!
- Struthers had his first real haircut last week! Those beautiful golden curls are gone, hopefully to return, but it was time after repeatedly being mistaken for a girl.
Medical Updates: It’s all About the Lungs, About the Lungs, About the Lungs…
- Recap of Zebra Hunt Part 1: Chest CT in May indicated that the damage to Struthers’ lungs is extensive. Multiple areas of collapse, fibrosis, and diffuse scarring, meaning the lungs are scarred to the point of being inelastic with little-to-no gas exchange in areas. Cystic Fibrosis and Interstitial Lung Disease eliminated as culprits, so it is ‘just’ severe and long-term case of Bronchopulmonary Dysplasia (BPD).
- Recap of Zebra Hunt Part 2: The Pulmonary Function Test concluded that Struthers has moderate-severe asthma in addition to the BPD. This is no surprise at all, it just tended to verify the cyclical, reactive symptoms we see when Struthers isn’t getting enough oxygen. And confirmed that we are doing the right thing in continuing to support with a high level of oxygen therapy. We cannot possibly expect new lung tissue to grow if the ‘live’ tissue that’s there is working so hard to keep up.
- We are still at 21 pounds (8 oz today), and we’ve been there for about 2 months. About 4 weeks ago, we received a feeding pump and direction to try targeting 40 ounces (of 30 kcal formula) or 1200 cal/day. Do you know how hard that is to reach even with a pump?!? In the 6 weeks since that directive, we have only reached that goal 2 times. And while Struthers looks great and has gained a few ounces from the increased effort, he is nowhere near being able to take in what he needs to grow and develop new lung tissue that will be necessary to compensate for the areas of his lungs that are permanently damaged and won’t recover. AND in addition to needing the extra calories to develop that tissue, extra calories are needed to support his current work of breathing. So just today, we were given orders to begin overnight continuous feeds. I’m not really sure how we will handle that at this point, but I will update as we figure out this new part of our regiment.
- I’ve used the term ‘work of breathing’ in this post several times. This is evaluated in several ways on a minute-by-minute basis in our house. Just watch the Duck video above… We watch for his chest pulling in, shoulders heaving, couching/gasping and ‘reaching’ with his head up, raspy/noisy upper airway, and wheezing. And every single day, even at 1 lpm of oxygen and 4 different inhaled steroids, we hear or see these symptoms that indicate support is needed. Often, we see these symptoms when he’s busy playing and being a normal toddler (or laughing adorably at ducks), so it’s the hardest thing in the world to figure out how to intervene (mom’s mind–prevent further damage much less encourage tissue growth) without interfering with equally important cognitive and motor development. It just breaks your heart when he CAN play that you have to interrupt it and make him sit still for a nebulizer full of steroids or you’re cranking that o2 dial up one more click. But at the end of the day, breathing is kind of essential and everything else falls behind it.
- Those were the exact words of the newest specialist (an endocrinologist) we saw this week. Steroids are bad, but not breathing is worse. If they’re necessary, we are grateful for them. But Goodness, this boy takes his fair share. Daily. The side effects and the risks of long-term, chronic steroid use are well-known and we already see quite a few of them. So we will minimize where we can, utilize loading doses for stressful events (procedures, surgeries, illness), continue proper weans of oral steroids, and go ahead and add that specialist to our list of ‘primary’ providers we see frequently.
As expected, just this recap and explanation of where we are (though even here there are holes–like eating–that I will just cover later) has exhausted me emotionally. So I do promise to do a better job of filling you in more frequently, allowing the emotion and processing to take place through this forum. For now, please know that your continued prayers are appreciated and that we are extremely grateful for where we are, giving all that Glory to our Creator and Savior, and living each day to its fullest.
Much love–Eli, Cami & Struthers