Follow up at Cardinal Glennon

Yesterday Alex & Mabry had follow-up appointments at Cardinal Glennon. First, Mabry had her auditory brainstem response test to check her hearing because she didn't pass her newborn hearing screen. I gave her a bottle to get her to sleep & held her while they performed the test. They put sensors in various places on her head and put a thing in her ear that makes clicking or beeping noises at different volumes. The sensors pick up whether her brain responds to the sounds. The test took close to 2 hours. Thankfully, she scored "near normal" hearing. Her right ear didn't detect the very lowest sounds, but for now it is not a major concern. She will have another hearing test at about 1 year adjusted age.
Alex had nursey follow-up appointment. He now weighs 9 pounds 15 ounces. They are very happy with his growth. His pulse ox while on his 1/8th liter was 100 (the highest it can be). Next we went down to lab for a blood draw. Tough little guy only let out one little cry. We came back to office and turned off his oxygen & was pulse ox'd for a half hour (or more). He did great, so he is now off oxygen. They also discontinued the daily D3 vitamin. In couple weeks, they may discontinue Alex's diuretic. Then a couple weeks after that he can come off the apnea monitor. Alex did wonderful his first night with no oxygen support. The apnea alarm didn't sound at all.

Before pic of Alex.

After pic of Alex.

Update/Pics from home

I went back to work last week. That has been a big adjustment, and definitely takes a lot more planning, but so far we have managed.  Thursday we have appointments at Cardinal Glennon. Unfortunately, Mabry did not pass her newborn hearing screen so she has been referred for an ABR, auditory brain stem response test. We are pretty confident that she can hear, but was just being stubborn when she had her newborn hearing screen. Alex has another nursery follow-up. If all goes well, he will come off the oxygen. This is what we are hoping for, but we also don't want to rush him, if it something he still needs. To be on the safe side, he will still be on the apnea monitor for a couple weeks after he comes off the oxygen. It alerts us if he stops breathing, or if his heart rate accelerates or decelerates.

Alex sitting in the bumbo. He seems to have less muscle control than Mabry. He did better than I expected. He looks bigger to me in this picture than in person. He is actually about a half pound smaller than Mabry.

 Mabry sitting in the bumbo. Looks like she's got a lot to say here. She is the loud one.

 Alex holding his bottle. Just a fluke really, but cute anyways.

Update from home

All babies are a lot of work. Twin babies are ,obviously, double the work. Twin babies with special health issues are even more work, and add on a 15 month old, it's exhausting. The first week or so we wrote down all their feedings & medications, so we wouldn't miss anything. It is most hectic in the morning and evening when they get their medications. 

A typical day goes something like this. First feeding is 2 oz breastmilk with 1 ml polyvisol & 1 ml D3, Alex gets a diueretic and Mabry just started a new medication for calcification in her kidneys. It is a smaller feeding to make sure they finish it and get all the medications. Sometime after that Alex gets a nebulizer treatment, pulmacort, to help treat his chronic lung disease. We have to check Mabry's blood pressure with a home Doppler, and give her medication for that. Because it is such a small amount of medicine, like 4 drops, for this we put a little milk directly in a nipple and put the medicine in, and have her drink it that way. Several times a day, Mabry get Ayr gel swabbed in her nose for her damaged septum. Throughout the day, of course, there are numerous feedings and diaper changes.  In the evening, Alex gets another nebulizer treatment, and Mabry gets dopplered again. She gets another dose of blood pressure medicine & her new medicine for calcification. Alex is still on oxygen and apnea monitor. The oxygen is a real burden, it is hard to move him around because he is tethered to a tank. We have a doctor appointment next week, hopefully he will come off the oxygen.

 

Follow up appointments at Cardinal Glennon

Today we took the babies back to Cardinal Glennon for follow up appointments. Alex had nursery follow up. He was hooked up to a pulse oximeter for a half hour to see how well he would tolerate weening his oxygen . He did fine so they weened his oxygen to 1/8 liter. He goes back in 2 weeks, and hopefully he can come off the oxygen completely. I want this so bad, but after 106 days in nicu, 2 more weeks is nothing.

Mabry had appointment with renal department because of her high blood pressure and calcification found in her kidneys. They  increased her dosage of medication for bp (because she has grown, not because her condition has worsened), took a urine sample , and will do a ultrasound of her kidneys in about a month to check on the calcification. Usually it goes away on its own.

We did get some good news today. Both babies are now ROP free! The blood vessels in their eyes have developed normally.

Mabry enjoyed the car ride.

Alex snoozed the whole way.

Pics

Alex & Mabry don't really enjoy cuddling together anymore. This is about as close as they get now.

Taylor checking out Mabry.

Mabry smiling.

Alex without tubes & tape.

Saturday pics

A quick shot of AJ with no tubes taken while we were re-taping him and Mabry hogging the bed.

4 months old

Alex & Mabry are 4 months old/ 2 weeks adjusted. Mabry weighs 9 pounds 3 ounces. Alex weighs 8 pounds 12 ounces.

Pics from home

Babies have been home for 2 weeks. They are growing and doing great. We are tired, but handling things the best we can. One thing we have not had to worry about is food. So many people have brought us meals and everything has been wonderful. It has been a tremendous help and we really appreciate it.