Aryanna is officially done with oxygen!!! Whoo hoo! The twins had their sleep studies about a week and a half ago and we got the call from the pulmonologist's office yesterday that she doesn't need it anymore when she sleeps. So exciting! So, you may be wondering about Anthony's sleep study...well...we're still wondering, too. Over the past couple of months any time we've checked Anthony's saturation without oxygen while he sleeps overnight, it's around 97 or 98 (the pulmonologist likes it to be above 95). So, we were pretty confident going into the sleep study that he would get to come off of oxygen. The morning after the study the sleep tech told us that she'd had to keep him on about 1/8 of a liter of oxygen most of the night and that his saturation had been around 92 before putting him on the oxygen. We were very surprised since that was such a big difference from what we usually see. We knew that being uncomfortable had to be part of it (I don't think I could sleep hooked up to all those wires either). When we got home and were ready to give Anthony a bath we noticed a bright red line running the length of his throat. That line stayed there for 5 days, so we're thinking that probably had something to do his low saturation. We think one of the cords from his chest was pulling on his throat and the poor baby couldn't breathe! When the nurse called yesterday and told us we need to keep Anthony on oxygen at night I explained all of this to her. She said she would talk to the doctor and call me back, but I never heard from her today so I guess I'll be calling again tomorrow. We're hoping he will let us do another sleep study with just oxygen and not all the extra stuff. We hate to put him through all of that again when we see him do just fine at home. We appreciate your prayers that we would be able to get all of this resolved.
Neurologist
At our appointment with our pediatrician about a month ago we decided it was probably time for Anthony to see a neurologist due to his brain bleed. Since the bleed was more severe on the left side of his brain (grade 4, which is the most severe), we have been seeing weakness on the right side of his body. He struggles a lot more to use his right hand and his head tilts to the left. We had the appointment with the neurologist yesterday and it sounds like he is really impressed with how Anthony is doing. He was really glad to hear (maybe even a little surprised) that he's never had any seizures. His right arm isn't very tight - PT and OT since early on have been key in that! He also seemed pretty confident that the bleed hadn't affected his cognition and intelligence. He interacts with us and is aware of what's going on around him. The neurologist wants to do an MRI to have a baseline for future comparison should the need ever arise and to see which areas of his brain were affected so we know what to keep an eye out for. Anthony will have the MRI in the next couple of weeks. The doctor reiterated that PT and OT will continue to be important as his brain continues to develop. He also mentioned the power of prayer, which we agreed with wholeheartedly of course! He said that he would be praying for Anthony and asked that we pray for wisdom for him and the other doctors - so cool! We also had a discussion about speaking in tongues and the King James version of the Bible, but that's a whole different topic for a blog post! We left pretty amazed with our little guy (we already were, but it's nice to hear a doctor say how impressed he is with Anthony's progress). We were also reminded once again how good God is - things could have been so much worse for Anthony, but he is truly a testimony to the power of prayer.
Craniofacial Surgeon
The last time we were at the pediatrician she also recommended that we see a craniofacial surgeon for the twins' plagiocephaly (flattening of their heads). (Side note - half the stuff I'm writing about isn't even recognized by spell check. It says pulmonologist, craniofacial, and plagiocephaly are spelled wrong - but they're not!) Anyway, preemies are prone to getting flat heads for various reasons - their skulls are softer when they're born, they're left in the same position for hours at a time in the NICU so as not to overstimulate them. If they're on a ventilator they can't move around much and in Anthony's case, the right side of his neck is weaker, so that puts pressure on certain parts of his head as well. The craniofacial surgeon will decide if they need helmets to help round out their heads or if he thinks they will round out on their own. (Don't be fooled by the name - we're not looking at surgery, just helmets!) This appointment will be in mid-May.
Feedings
Feedings have been okay. Aryanna eats pretty well most of the time and she's been gaining about a 1/2 an ounce a day. They like them to gain between 1/2 an ounce and an ounce a day so she's doing pretty well. Anthony still fights the bottle quite a bit, but likes his sippy cup and LOVES to eat baby food. He didn't gain last weigh-in so I'm anxious to see how he does tomorrow. Please continue to pray that they would eat well and gain weight.
RSV Isolation is Almost Over!
As many of you know we have stayed away from public places other than the doctors' office all winter to protect the twins from RSV. It has been a long winter, but well worth it because neither baby ended up with any serious illness - praise God! Our pulmonologist recommended keeping them out of public places through the end of April. The end of RSV isolation is just around the corner and we are so excited to get out and about as a family next week! We're also looking forward to introducing the twins to all of you!
