So here we are, fifteen days after Andrew has come home. Our new family life has been challenging but joyful. Being the considerate baby she is, Eleanor decided to poop regularly and sleep through the night two days before Andrew’s arrival. Isn’t she so sweet?
Andrew has been adjusting from NICU to home life. He doesn’t really like to sleep at night, so far, but he’s working on it!
Aside from hanging out at home, Andrew has been a very, very busy little man in the past week and a half with all kinds of doctors appointments–14 this month, alone! Here’s a round-up of updates about what he’s been up to medically:
Ophthalmology: His retinopathy of prematurity has finally regressed, but scar tissue remains. He will likely require glasses. We can deal with glasses. Follow-up appointment in January.
Surgery x2: Because of proper nourishment, Andrew’s wound is healing pretty quickly. It’s about half the size that it once was. However, the healing is going a little too nuts now as there is a lot of overgrowth of granulation tissue. Nothing that a little dose of silver nitrate can’t handle, although Andrew really hates the stuff. There is even talk of pulling his g-tube in the next couple of weeks because he is putting on weight so nicely (11.2 lbs now! And Eleanor is 11.11!). Appointments every Wednesday.
NICU high-risk clinic: Both babies had an appointment at the clinic last week. Eleanor is thriving and loves to show off her excellent tummy time abilities. Andrew is clinically very healthy but is developmentally quite delayed, which takes us to….
Neurology: We didn’t learn anything about Andrew that we didn’t already know. Andrew has been exhibiting signs of neurological abnormalities that are of concern: sustained ankle clonus, hypertonic arms and legs, abnormal head lag, and a head circumference of 36 centimeters (which is very small for his age and not even on the charts). You might wonder why Andrew has microcephaly (small head). Andrew’s PVL has caused enough damage that parts of his brain have died and, in turn, shrunk. The neurologist told us therapy and a ton of love is the best thing we can do with Andrew right now. There isn’t much that a pediatric neurologist can specifically do for Andrew at this point, unless he starts having seizures (which he is at a very high risk for). So, let us all pray that Andrew will never have to deal with seizures. Of the many uncertainties in Andrew’s future, seizures are probably among what Mike and I consider to be the most feared. Seizures can be that devastating. On more of an optimistic note, there certainly are promising neurological signs for Andrew as well. He has an excellent suck/swallow reflex (great for obvious reasons, but also bodes well for future speech potential), has started to coo–sort of (the neurologist calls them “mini-coos”), visually tracks objects and people like it’s nobody’s business, has excellent head control when sitting with assistance, and is finally starting to unclench (and keep unclenched) his fists. And although he doesn’t really move much most of the time–which is very concerning, actually– he moves all four limbs like a little mad man when hysterically crying (legs in alternating kicks; a primitive reflex that is helpful for future walking potential). While stomach issues plagued Andrew’s early life, it is the neurological issues that will challenge the rest of it.
Gastroenterology: Andrew continues to eat well and his liver function is close to normal as well. I did, however, receive a phone call from his doctor yesterday about an elevated white blood count in Andrew’s most recent blood test, so Andrew will have to go back this Monday for more testing. I haven’t really taken the time to think of what it all means, but the doctor suspects that Andrew might be allergic to a particular milk protein in the breast milk he consumes. We’ll see. Clinically, he otherwise appears great on the GI front. We’re not too concerned. Famous last words…
Respiratory Syncytial Virus (RSV): Between the months of October-April, Eleanor and Andrew will receive monthly RSV vaccines until they reach two years of age and their lungs are finally developed. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV is typically not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks (ours were born at 28 weeks), are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications. This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby, at the same gestational age. One might ask, “Can’t they fight it off and build up their immune system? Kids need to be sick, right?” The simple answer is NO, not yet. Since the twins were pre-term, they did not acquire the necessary immunities to fight off infection. If they contract RSV, they could be hospitalized. As a result, we have been extra vigilant about hand washing, limiting visitors (no children and babies), staying away from sick people, and avoiding crowds of people (malls, indoor spaces, church, birthday parties).
I know, this is a lot. But we are taking things day-by-day and doing all we can to enjoy the present. They’re only this young and scrumptious once!