It feels great to start a day on a full night’s rest. Midnight to 5 AM is a full night’s rest, right?! It certainly is more sleep than I’ve had in quite a while!
We got a phone call this morning from the nurse on duty (by the way, these nurses are incredible, patient, kind and so incredibly supportive!) letting us know Colten was stirring and rooting! Unfortunately they called Richard’s phone and for those of you that know us, or even just him, you know how that shook out. So by the time he noticed a call had come through and we called back, Colten was sound asleep. We got ready and came back to the NICU for the day. Colten nursed like a champ this morning and then just sat with me, then Richard for a couple hours this morning. He is still mostly just sleeping but his body needs the rest to focus on healing right now.
It’s so nice that during all the doctors’ rounds and check-ins, even if Colten is being held by us, they just do their exam right there instead of making us put him back in bed. And the doctors have all been incredibly patient in answering questions and explaining procedures and diagnoses to us.
7:00 am – The plastic surgery team checked in and all is looking great from their perspective.
8:30 am – The attending orthopaedic surgeon, Dr. G. Ying Li, came to visit and talked mostly about Colten’s feet and moving forward. She confirmed that he doesn’t have club feet, but has calcaneo valgus. Basically club feet go down and in, calcaneo valgus go up and out. This can often be corrected or at least improved through bracing or casting. You might wonder why it would be important to correct if his feet are going to be unusable. Don’t worry, we asked! Even though his feet would not really be doing any walking motions, a brace that goes from his hip or knee would connect down to his feet and we need his foot bones to grow properly in order to provide the best brace fit and assistance with stability. We can’t do much else at this point but talk with the physical therapist about getting braces. We’ll follow up with the ortho doc once Colten can lay on his back and further testing can be done. She will also get an ultrasound at that time on his hips, since he has two strikes against him when it comes to hip dysplasia – being breech and having spina bifida. We aren’t sure what movement he even has in his hip muscles at this time. Based on his level of defect, it’s possibly he’ll need quite a bit of therapy and/or assistance to get good hip movement.
9:00 am – Neurosurgeons checked in to monitor hydrocephalus. So far he’s looking good and will get an ultrasound on Monday of his head to get some actual ventricular measurements. Based on some of the findings during surgery, the neurosurgeons told us that even had we found out about his spina bifida earlier, we would not have been candidates for the in-utero surgery that some hospitals offer to close the spine before birth. This surgery is still very experimental as it is and requires a lot of follow up care after it’s done, before the birth. But the goal is to minimize some of the damage and reduce infection and surgery after birth.
10:30 am – NICU rounds include a variety of specialists and the neonatology staff (nurses, doctors and other providers). They are monitoring more of the general health of the kids up here – weight, feedings, antibiotics, caring for the other items involved in the care (catheters, tubes, etc…). Colten’s weight is down to 7# 3 ounces. He’s still a healthy weight, and it’s hard to get a feel for what his normal was to begin with because he obviously had some additional masses attached to him at birth (7# 14 oz). Then surgery pumped him full of fluid, then he lost that, and he’s been mostly consuming just sugar water via IV. So now that we’re post-op, we have a better baseline and can monitor from there. He has a feeding goal and we’ll be both breastfeeding and feeding my milk from a bottle so they can more closely monitor the amount of milk he’s getting. They aren’t overly concerned, we just want to be able to get him off the IV by tomorrow.
11:40 am – Lactation consultant came to chat and provide some insight on feeding and pumping together to make sure all went smoothly.
So that’s been our morning. Colten has slept through most of it. He has no idea the fun he’s missing! Today and hopefully the next few days should be fairly quiet besides some blood draws, more consultations and a couple tests such as an ultrasound. No major changes coming to him yet. The next big thing that would take place, if it takes place while we’re here this time, would be the shunt placement. So we’ll be watching for that. We just want him to be a bit more awake and alert so we can see those beautiful eyes again!