But for the lone balloon still attached to Tucker’s high chair, the birthday month and all the emotions that came with it is over. We’re back to appointments, Final Four and Masters watching and the most exciting thing…the last month of isolation. This is kind of a technical post but I wanted to give a little update on T’s recent appointments. So, sorry for the maybe dry, medical term filled post. It’s about to get all Grey’s Anatomy up in here.
Here’s a rundown of the appointment updates
If you followed Tucker when we were in the hospital, you might remember he developed Stage 3 ROP (Retinopathy of Prematurity). Almost all micro preemies develop it because their little eyes weren’t ready to see and reflect light so this almost always causes abnormal retina vessel growth. Depending on the severity, ROP typically can require surgery to treat (Stage 3 and 4). The surgery, unfortunately causes the baby to permanently lose his peripheral vision. But left untreated, ROP causes blindness. In fact, Stevie Wonder (a preemie!) is blind as a result of untreated ROP. Tucker’s Stage 3 was in one eye and particularly stubborn-we were close to surgery for several weeks but thankfully the ROP began to regress. Once home, we saw the eye doctor several times until he finally released us to a every few months appointment schedule. We had been told to expect to see the eye doc every few months or at least, every year until Tucker was 4-5. So the words that came from the mouth of T’s eye doctor at our last appointment were unexpected to say the least. “His eyes look great. You don’t have to come back for three years.” Say what? THREE. Almost unheard of. Thank you, Lord. This kid amazes us.
Early Intervention and Independent Therapy Assessment
Tucker gets assessments from Early Intervention about once every 3 months. (For my preemie parents reading-you know this drill). They evaluate and “score” him in several different areas to see if he is delayed in any part of his development. If he is, a therapist in that area would be assigned and we would work more intently with therapy in that specific category. They assess based on his adjusted age, he was 8 months adjusted for the assessment. Tucker scored within the 8 month range in most categories (yay!). In fact, in some areas he scored in the 9-10 month range which is really good. The categories are broken into Gross Motor, Fine Motor, Language, Self Help and Social.
One area that we guessed he would score a little lower in (and he did) was Speech. He scored in the 7 month range for Speech. We also decided to take him to an independent therapy assessment to make sure Early Intervention wasn’t missing anything. They agreed that he is well within his adjusted age range for development and that we would want to keep an eye on Speech. Tucker understands very clearly that you are talking TO him, but he doesn’t quite yet mimick you when you speak to him and has just started making repetitive consonant sounds (baa, maa etc.). Both EI and the independent therapist feel like, the communication will come very soon. We could start therapy in speech if we wanted with the independent therapist but we are going to wait another 2 months to see where he is. Overall, developmentally, Tucker is doing really, really well. And at our independent assessment, we got to see our podmates, Andrew and Owen from the NICU! They haven’t seen each other since they were all discharged. Andrew and Owen were 25 weekers that arrived in our Pod #4 about 2 weeks after T was born. It was so great to see them.
Maybe the biggest change since our last post is the addition of Tucker’s newest accessory-a cranial band. Which is a very official name for…a helmet. Babies that spend an extended time in the NICU often develop plagiocephaly, a six syllable term that is easier described (and pronounced)- as a flat head. Tucker has a flat spot on the back right quadrant of his blonde noggin.
In the NICU, the nurses, doctors, specialists, moms and dads almost always gravitate to the same side of the isolette to interact and do their assessments. Usually the side is dictated by whether you are right or left handed. It is already difficult to care for the baby through two small portholes. Imagine putting an outfit on your baby by sticking your hands through two orange-sized openings. Add in wires on his foot, his chest, nose, head and maybe an IV line or two. It’s an art. So most have a favorite side from which to work. This of course, means the baby tends to look in that direction. A lot. There is a sociology lesson in there somewhere about the anticipation of human interaction. Since his cute head was always looking towards the right, he got a cute flat spot. We worked on it when we got home and the flatness got better, but it is still classified on that one side as moderate. So. We got fitted for a helmet.
The good news is, Tucker has maybe the coolest helmet design ever. We had it painted by Leigh Gibson, who took our vision for the design to another level (Click here for her page). The bad news is he has to wear it 23 hours a day. The worse news is, his head sweats. And the worst news. Sweaty head + helmet 23 hrs= stinky head and stinky helmet. No for real. It’s bad. Good thing he’s so cute, I barely notice the smell when I take it off and kiss his head. Barely. He totally rocks the helmet though. And the smell is worth it. This kid has been through enough, he deserves a nice round head. Stinky or otherwise.
Whew. That was a lot. If you skipped through to get to the pictures. I don’t blame you.
This week we have a follow up for his hearing exam. Last time, he did well with the exception of the very faint sounds. So the prayer this week is that he hears those faint sounds and passes the exam. As for the last month of isolation-well, all we can say is YA to the HOO. We are ready. Technically isolation in the South ends first of April but since it’s been such a terrible virus season doctors are recommending we ease into it and extend isolation just a few more weeks. Tucker is working on a video tribute to the end of isolation, it will be posted in an upcoming post. You won’t want to miss it.
A few prayer requests:
- Pierce, a former 23 weeker friend of our’s. He has upcoming brain surgery. Click here for a recent update
- Evan, a 23 weeker in the NICU currently. Please pray for continued lung development and overall good health
- The Christian family-this is a family at our church who lost their mom this week. There are 4 teen aged kids and sadly, they had already lost their dad many years ago. They need some special prayers.
- That Tucker would pass his hearing exam
“And take the helmet of salvation, and the sword of the Spirit, which is the word of God.” Ephesians 6:17