Last week was a busy week full of lots of running from appointment to appointment. Maks had his first eye exam since being home last Monday. It was pretty exhausting for him, but we were encouraged to find out he was still showing growth into his peripheral vision.
We have loved having Maks home, and I am so grateful to be able to snuggle with him and love on him whenever I want. He is awake more, and I can't imagine him being so awake and alone in the cold NICU! I also think it is good that he has the consistency of Logan and me. Here are a few pics from the week:
The rest of Monday and into Tuesday was pretty rough for Maks. He got so worn out from his eye exam and doctor's appointment in Monday, and he just didn't have the energy to eat. He lost weight when home health was here to weigh him, and we ended up having to go to the NICU to get the feeding tube back in. That was a setback that was kind of upsetting to me, but I knew it needed to be done, and it has definitely helped him gain strength and gain weight.
Friday was my due date. I remember the day Maks was born, thinking that April 12th seemed so far away. I can't believe it has now come and gone. Maks weighed 6 lbs that day, which is probably pretty close to what he would have weighed if he had been born that day. He really has come so far.
Maks was doing well eating the past couple of days. We we have only had to use the feeding tube a couple of times a day if he got too tired when eating. He has also been doing well with the oxygen, and he is usually only on 1/32 of a liter. Unfortunately, Maks had another eye exam today that has really done a number on all of the progress he made last week. He hasn't eaten well since the exam, and his oxygen sats are all over the place. He is on 1/8 of a liter right now and is still fluctuating.
The eye exam also wasn't that encouraging today. The growth into the periphery has significantly slowed, and the ridges are more pronounced and beginning to pull. Maks is scheduled for laser treatment on Thursday to prevent any damage or blindness. The ridges haven't quite made it into zone 3, so he will lose quite a bit of his peripheral vision.
It turns out this surgery is a pretty big deal for these little ones. Maks will have to be hospitalized and intubated, which I'm sure will only add to the setbacks we have had this week. I'm not sure how long he will be in the hospital. We will talk to the hospital tomorrow and hopefully get some answers
We have been pleased with Dr. Romriell so far, but because of the nature of the procedure and what is at risk, we have decided to contact the Moran Eye Institute in Salt Lake for a second opinion; however, if we can't get in to see them this week, we will probably just go with the procedure here because we are afraid of waiting too long due to the potential for retinal detachment.
To complicate things a little, I started back at work today, and Milyn spiked a fever again yesterday due to her tonsils. To say we are going a little crazy at our house would be an understatement! We continue to pray daily for more strength and miracles!
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Crazy how life can happen all at once! Praying for you guys and the strength to get through.
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