Day 77

I forgot to mention yesterday that we took Milyn to the ENT yesterday morning. We were pleased to hear that her tonsils have responded to the steroid treatment, and unless they swell back up now that she has stopped the steroids, she doesn't have to get them out! One less thing to have to worry about, and it looks like we are finally getting our happy and spunky Milyn back. It has sure been a long three weeks, though!

Maks had a good day today. Dr. Anschutz was on, so it didn't surprise me at all when the liter flow on his oxygen was reduced from 2.5 to 2 LPM. He has been tolerating it fairly well, but has become a little tachypneic this evening (breathing faster than normal). Hopefully his lungs will adjust to the change in the next couple of days. If he continues to tolerate the weaning on the vapotherm, Dr. Anschutz said he could be on wall oxygen as soon as next week.

He has still had some constipation, and I keep whining about the fortifier change to Breast24. I asked the doctor what he thought about increasing him back to 170ml/kg/day and putting him back on the Breast22 to reduce the constipation. He looked at Maksim's growth chart, and he was very very pleased with how it looks. He just really feels that Maks needs the extra fortification to continue with good brain and lung tissue development. I couldn't argue with that, so we settled on an agreement of adding a little prune juice to his diet a couple of times a day to help things get moving. Hopefully that helps to make Maks more comfortable.

Yesterday was a rough day for me. The timing of rounds in the mornings is somewhat unpredictable, but it seems to have been getting later and later
lately. Because of this, I have been bringing my work computer to the hospital with me so I can get some work done while waiting for rounds to start. I also haven't been able to go to the hospital in the evening at all this week because Milyn as been so sick and whiney, that I haven't been comfortable leaving her with someone twice a day. This means that all week, I haven't really had any quiet time to just sit and be with Maks, because I was working when I was there in the morning, and I was not getting my usual afternoon time with him.

I started feeling really bad for myself yesterday as I looked around at all of the other mothers in the NICU who seemed to have nothing on their minds at that moment except their precious babies. I hated that I was also concerned about all of my work and how I would be able to accomplish it. I wanted to be able to just sit and hold Maks, and relax, and focus on him getting well. Instead, I was stressed. Everything started to feel really unfair, and I again questioned why this had to happen to me. I can think of several selfish reasons why I think other people would be more suited for this trial. For instance, it could have happened to someone who didn't have to work full time, or someone who didn't have a toddler at home. However, for whatever reason, God assigned this trial to me and to my family. He somehow knows that I will get through this. I wish I could feel the same, and I wish I could feel that strength.

I was able to take some PTO today, and it helped quite a bit. It was so nice to hold Maks at the hospital this morning and not be worried about getting back to work in time to get something done before getting Milyn from the babysitter. I am also excited to be going to Time Out for Women with my mom and sisters this weekend. It should be a nice break from everything that has been going on this week.



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