I haven't provided an update on the boys' health since our CaringBridge days, so I wanted to catch up on their progress. Appointments are an almost daily obligation. Last week we actually had six appointments in five days, so it's busy.
Charlie is doing exceptionally well. He weighs 14 pounds and has finally broken into the "normal baby" growth chart. In preemie land, he's in the 75th percentile for weight, but for his chronological age, he's in the 5th! Up until now, none of the boys had placed on the regular growth chart, so it's exciting to see him catching up. The main concern with Charlie is strength and muscle tone. He's the "floppiest" of the three and struggles to lift his head off the floor or maintain head control when upright. He still prefers looking to the right, and is pretty flat on the right side of his head. His neck is a little tight due to this preference, so they'll work on it in physical therapy. He's very interactive, loves conversation, and smiles at us all the time.
Benjamin weighs 12 lbs 6 oz, and is doing well after his PDA ligation. His incision looks great, but we can't lift him under the arms for another 3 weeks. We have one more appointment with the cardiologist and then we're (hopefully) done. Ben's muscle tone is so-so. Better than Charlie, but still not great. He's also receiving PT and will hopefully become better on his tummy too. He smiles at us and likes to interact. Still more serious, but so sweet.
Ikey finally broke 10 lbs (and 5 oz, to be exact!), but continues to face the most issues overall. His eyes are definitely our largest concern. His ROP remains at stage two, but is somewhat improved. The healthy blood vessels seem to be growing (slowly) outward and the disease itself hasn't reactivated, which is great. Unfortunately, we're not sure that he can see at all. Isaac does not look at us, track objects, or smile responsively, which is very troubling at this point. Structurally, his eye is fine and his level of ROP wouldn't cause blindness. Basically, if he has no vision, it's a brain issue. Fortunately, he never had a brain bleed and all (four) brain ultrasounds in the hospital were normal, so we're holding out hope that his eyesight will still develop. He's considered DVM (delayed visual maturation), but supposedly some preemies are late visual bloomers and go on to see just fine. In the meantime, it's obviously scary for us. We want to believe he'll be okay, but as the days tick by without any reassurance, we worry more. Besides that, his blood pressure and Alk Phos labs are trending in the right direction, but still not completely normal. He'll have another round of labs and a kidney ultrasound in October. It would be nice if those concerns resolved by that time. On the bright side, Isaac is really strong and lifts and holds his head much better than his two brothers. He'll still have PT to avoid further developmental delays, but he's definitely fighting to keep up.
Our post-op appointments are finally out of the way, so we got to scratch two surgeons off the doctor list. I think we're making steps in the right direction, it's just hard to stay patient. We remind ourselves everyday that from the beginning, every single thing has effected Ikey worse and taken longer to resolve. Right now, we have no reason to believe that his vision will be any different. Keep calm and assume he'll do it in his own time, that's our plan. So that's where we stand! Just wanted everyone to know how the boys were doing health-wise before the weekend. Despite the lingering problems, they've sure come a long way...