His surgery was done in an isolation room at the EIRMC NICU by Dr. Eric Romriell, a retinal specialist. It typically requires at least a 24 hour hospitalization stay, but Maks ended up having to stay two nights, mainly because he had a hard time coming off the ventilator and out of the sedation well enough to eat on his own. It was a rough two nights! Seeing him intubated, ventilated, and being so closely monitored brought back so many emotions I thought I would never have to experience after he left the NICU the first time. It was also interesting having him back in the NICU after having him home, because I now felt like, as his mother, there was truly no one who could care for him better than I. When he was there before, I knew he was in good hands with the doctors and nurses, but now I hated to leave him because I know him best. I don't really know how to explain it, but I sure didn't like him being there. Here are a few sad pictures. His poor little eyes were so swollen after the surgery. :(
Maks has follow-up appointments with Dr. Romriell every two weeks, and when he is 6 months old, he will start to see Dr. Porter about corrective lenses.
After the surgery, Maks had a couple of really good oxygen days. It's almost as if the ventilator opened his airways and gave him a little boost. I was so encouraged and hopeful that we would be able to kick the oxygen very soon. The occupational therapist came, and she actually made a goal to have him off of it by May 25. Maks had a couple days in a row where he was on 1/64 of a liter only some of the time, then I was able to take it completely off for most of the day. I even took him to the doctor and ended up having it off most of the time there because he kept high satting. This makes me sad just thinking about it because I was just so excited. It wasn't too long after that doctor's appointment, though, that he started requiring more and more oxygen. He still hasn't bounced back and is requiring 1/8 to 1/16 most of the time.
Maks continued to have the feeding tube after the eye surgery. This started to become very stressful for me to count every minute and every milliliter at every feeding. I just kept thinking how much I missed the ease of breast feeding Milyn. After finally becoming fed up with scrutinizing everything, I decided to switch his bottle type to something without all the milliliter markings on it. For some reason, it just made me feel better and less stressed. I got out the bottles we used with Milyn. They are the Playtex VentAir bottles, and we happened to have the rapid-flow nipples. This change has made all the difference! Maks pulled his feeding tube out a couple of weeks ago, and I haven't had to replace it since! Hopefully it is gone for good!
Unfortunately, I finally had to give up on pumping, and I am having a major guilt trip about it. With work and the two kids and all of Maks' appointments, I just literally do not have the time to pump and feed him. Luckily, I have a deep freezer full of breast milk, and it should last at least a couple more months, but I wish I would have been able to do it for the full first year. As hard as breast feeding was for me with Milyn, I stuck it out the whole first year, and I would give anything to be able to with Maks.
On Cinco de Mayo, Maks turned 4 months old. It is pretty remarkable to see his growth and change! At his 4 month check up, he weighed 7 lbs 8 oz and was 19 1/4 inches long. Just look at his new comparison pictures!
Maks has had bilateral inguinal hernias since he was born. We have always known we would most likely have to get them surgically repaired, but we had hoped it could wait until Maks was much bigger, stronger, and off the oxygen. Well, that darn left hernia has sure been giving him grief. I noticed last week that it was starting to look more pronounced, and when I mentioned it to his pediatrician, he agreed. He had me set up an appointment with St. Luke's pediatric surgery for a consult. Since my brother-in-law, Mark, works there as a nurse anesthetist, we asked him for a recommendation. Luckily, we were able to get an appointment for a consultation on May 23 and for surgery on the 24th with the surgeon he recommended.
Unfortunately, last Friday, that left hernia became irreducible, and Maks was in a lot of pain and throwing up. We ended up having to take him to the ER because the pediatrician was worried it was incarcerated. The ER doctor finally got it to reduce, and he told us we should get to Boise early in the week to see if they could do surgery. He didn't think we should wait until the 24th.
So, we packed everything up, left Milyn with my parents, and headed to Boise on Sunday with no appointment, but with a prayer that we could get one Monday morning. We were shocked when we called the office and got one with Dr. Curnow, who is the surgeon we originally scheduled the surgery with. When he saw the hernia and learned that we live 5 hours away, he said it needed to be taken care of that week. Unfortunately, when he said that, he thought we were already on the surgery schedule for that week. When the nurse told him we weren't, he said he wouldn't be able to fit us in until our previously scheduled surgery on the 24. He basically said that we should push the hernia in with every diaper change and pray that it didn't become incarcerated or strangulated before the surgery date.
The surgeon also told us that because Maks is a micro preemie and still so small, there is a risk of compromising the circulation to the testicles because his blood vessels are so tiny. Therefore, he will only operate on the problematic hernia now and will wait until September or October when Maks is bigger, to fix the other one in an effort to prevent potential damage to both testicles. This means we have yet another surgery to worry about and another setback to prepare for. Hopefully, the bigger he gets, the smaller the setbacks become.
So, we had to take our sad little baby back to Idaho Falls and will have to make the trip again next week. I should have anticipated the toll the traveling would take on Maksim, but I indefinitely wasn't prepared for it. Since the trip, Maks has been very exhausted and has been sleeping a lot. He has also required even more oxygen, and he continues to drop his oxygen sats down into the 60s and low 70s several times throughout the day. This makes for a lot of beeping and a lot of headaches. It is sure hard to get much work done during the day and much sleep in during the night with all of the beeping. The frustrating thing about it is that he drops way down and beeps for several seconds, but then he picks back up to the nineties, so turning the oxygen up doesn't really help much. He has been able to self-recover without any stimulation, so that has been good. The other day, after trying to work through a migraine from it all, I finally turned his oxygen up a notch, and simply turned the monitor off. I don't usually do that, but I just couldn't take it any more, and I welcomed the silence!
Maks had an echocardiogram today. Dr. Anschutz ordered this to be done at four months of age when he originally discharged Maks from the NICU. All of his other echoes have been good, so I have little reason to assume that this one wouldn't be; however, for some reason, I am worried about it today. Maybe it is because as Maks is gaining weight, he should be gaining lung tissue, and I feel like his oxygen requirement should be decreasing instead of increasing like his has been.
I have no idea what exactly the radiology technician was taking pictures of and what he was making note of, but every little thing I saw made me paranoid. With every test that is done, there is a risk of finding out something else that is wrong, and it is just stressful. Hopefully it is just me, and everything will be fine! The cardiologist was going to read the echo this afternoon and send the report to the pediatrician, who will review it with me at Maksim's appointment tomorrow.
On a different note, I was able to get my work schedule changed, so I now work Saturday through Wednesday! This means I have Thursdays and Fridays off, so I can schedule all of Maksim's appointments on days that I am not working. This helps my work days a lot, because my work isn't interrupted by trying to get to appointments, but it sure does make for one exhausted Shalee. For now, it seems like the appointments are never-ending because more things just keep coming up. Hopefully it will eventually get better as Maks gets bigger and stronger.
Now that I got out all of my frustrations, I will end with some recent pictures! There are some of Maksim with his new cousin, Payton. Good night everyone!
He is always holding onto his tubes. I'm not sure what he will do when we finally get rid of that oxygen! :)
My beautiful Milyn has started curling her upper lip when she smiles. What a cutie!
Thank goodness for a swing set!
- Posted using BlogPress from my iPad
