The last few weeks have been full of adventure, from a friend-and-family-filled Fourth, to a Rockies-Braves baseball game, to solid food eating and less-traumatic bathtimes! The photos are worth a thousand words in this case for sure…My little man is so happy most of the time, and we are so thankful and blessed for that!
- We will be on the oxygen for quite awhile, as Struthers still ‘desats’ within a minute of not having it on…I’m just so thankful he has that available! The photo you see in the bathtub of him without it on was because we were pretty sure breathing carrots in was worse than taking it off for the world’s quickest bath and cannula replacement. We are balancing the need for him to keep his pulse oximeter/heart rate monitor on at night so we know when he pulls the oxygen off with his ever-curious, newly-discovered hands, with the fact that he keeps getting burns on his little feet. We are working with the manufacturer and our oxygen provider to resolve the issue, but he continues to wake up most mornings with little blisters under the infrared light (which shouldn’t burn).
- Each morning when I go wake Struthers, he greets me with the biggest smile that melts my heart! And I’m fairly sure that he grows during his sleep each and every morning! He’s now exactly 13 pounds, and plodding along on his own little growth curve. If I had to guess, he will likely meet the 0 percentile for his actual age somewhere between 18 and 24 months. For now, I’m just embracing my
tiny little guy who’s still in 3 month clothes, and I’m thankful that he is still growing and looking so healthy!
- Bathtime, once an absolute dread for all involved, is now a fun nightly part of the bedtime routine! There’s so much I’m still learning about how preemies can be overly sensitive to various sensations. For Struthers, it has been touch. But he’s now getting to the point where he easily transitions to someone holding and cuddling, he actually likes bathtime and is learning the pool can be fun too. I can’t tell you what an emotional hurdle this piece has been. For four months, I waited for the ability to pick up and hold my child whenever I wanted. And by the time we got him home and I could do that, he was becoming more aware of touch stimulus and it just wasn’t comfortable for him. I think the hernias and reflux played a role in that as well. Whatever it was, it’s so much better now and it means the world to me that I can finally come into the room and pick him up or move him without a traumatic cry.
- Weekly PT/OT continues with major progress (and that was our one appointment last week). Struthers continues to impress cognitively and socially, but the physical is still lacking. He doesn’t put his arms out to push himself up and if we do tummy time, he just lays there flat and frustrated, even though he has the neck and shoulder strength to lift. So patience and ‘modified tummy time’ are the name of the game. I’m fairly sure he will just do a full situp one day, and then stand, all without rolling over.
- We have a TALKER! Oh. my. goodness. This boy loves to talk! I’m not sure what he’s saying, but he certainly interacts as if he’s having full conversations. Don’t know where he gets that from ;P
- Eating! We’ve done avocados for a whole week, carrots for a whole week, and we’re on to peas this week! Struthers almost eats solids better than he nurses or drinks from a bottle. Crazy, but we’ll go with it since that’s actually how he’ll eat for the rest of his life…
- We have a NICU reunion at University on August 1, and I can’t wait to see the staff, physicians and nurses, as well as the families we connected with during our harrowing journey.
Speaking of that harrowing journey, there is so much I’m still processing about it all–about both his journey and mine. And how God is still weaving this beautiful story together. And just as Struthers makes progress each day, I’m making progress sorting through the emotions, which are sometimes triggered by the most random things in the most random moments. Here’s a glimpse of one such breakthrough moment: I’ve always sung to Struthers, and among the favorites is You Are My Sunshine. But have you ever heard the second verse of that?
You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You’ll never know dear how much I love you.
Please don’t take my sunshine away.
The other night dear, while I was sleeping,
I dreamed I held you in my arms.
But when I woke dear, I was mistaken.
And I hung my head down and cried.
I knew that verse, but only recently after several months of sleeping in the same house with my son, am I able to get through the song with that verse in it. Not only is he here in the house with us, he is HERE with us! After years of wondering whether we’d ever have this opportunity, months of praying that I’d be around to enjoy it, then months of praying him through a daily battle to breathe…now I just smile, knowing that the separation is temporary, and all I have to do is walk to the nursery to see him sleeping soundly. Sometimes I still hang my head down and cry, but it’s not a sad separation cry anymore. I hang my head and cry out a humbled thank you for all our answered prayers.