It's been awhile since my last post. Ryan is doing incredibly well now, but for awhile there wasn't much to post and I had started getting a little leery about documenting any progress because it seemed to always be one step forward, two steps back. He was home and on oxygen for July and most of August and we didn't really stray far. We had portable O2 tanks, but thankfully by the time I got comfortable using them, he no longer needed it. Although part of his diaphragm is still not working, he has learned to pull air into his lungs using the muscles between his ribs and in his neck.
He recently had a followup with his cardiologist, Dr. Drake, and he is so pleased with his progress. He had an echo (basically a fancy ultrasound of the heart) which showed that his heart is working very well, just some mild narrowing of one branch of the pulmonary artery which is really inevitable with a repaired TGA. His EKG showed a very normal rhythm and we have been fortunate that he has never really had any problems of that type. There was a little girl at childrens that had the same surgery the day after Ryan, but instead of an ASD, she had multiple VSDs which I think lead to more problems with the hearts electric system and how it beats. I am still worried about his diaphragm and what the long term impacts will be if it doesn't heal. I haven't really talked to the cardiologist or anyone about what it means long term, but plan to ask at his next followup in October. It could still heal and I realize we are very lucky to be where we are. Dr. Drake did say that it was keeping his sats in the low 90's instead of the high 90's because his lungs are a little "wetter" then normal and he kept him on a medicine called Lasix to help with that. He said the lower sats are not a problem and I trust him, but it is still unsettling for some reason. I think about him being able to run and keep up with his brothers and do the things they do and I worry about his getting sick this winter. Again, I realize things could be much worse and we are so happy with his progress and where he is now.
Probably the best news is that he is gaining weight well and I have been able to switch from pumping and feeding him fortified milk to nursing him which is about 100 times easier, especially at night. I am still amazed that he is nursing after everything he went through and I am very thankful to the lactation nurses at Children's that gave me so much encouragement when I wanted to quit pumping so many times. I am terrified of him getting sick with one brother starting kindergarten and another starting preschool and any extra immunity he can get is worth it. Because I pumped so much to establish my supply, I have a ton of frozen milk that I don't think he will ever drink. So I have been looking into donating it to a milk bank where it could be pasteurized and used for other babies who need it. They have a screening process that includes a blood test, but they pay for everything including shipping so I think it would be worth it. I just can't stand the thought of throwing it away after spending so much time collecting it, but I also really miss the space in my freezer.
Ryan is really a normal baby at this point. He has already rolled over a couple of times, which is amazing given that he have very little tummy time for the first 2 months of his life. He smiles all of the time and loves to watch his brothers. He "coos" alot and loves being sang to. He is almost sleeping through the night, I try to feed him around 10 and he almost always sleeps until 4.
Speaking of his brothers, they are both doing well. Kyle turned 6 and started kindergarten. He had a birthday party at the bowling alley which was lots of fun and he really likes school. He was heartbreakingly stoic on the first day, getting on the bus and finding his classroom all by himself. The plan was that he would ride the bus and I would meet him at school to make sure he found the right place, but he is one of the last stops and by the time I got to the van, drove and parked, his bus was leaving empty, so I went to his class and found him sitting with a friend from t-ball and two other boys. I took a couple of pictures and went to tell him goodbye and he was like "Ok Mom, get out of here". Other then school is playing soccer again which he loves. He had his first game and scored 2 goals which is good, because he is not much fun to be around when things don't go well. I hope that gets better this year because sometimes last year he would get frustrated if things didn't go his way and that just made things worse. He is lucky to have good coaches as opposed to last season when as he put it "They didn't have a real coach, so my mom said she would be the coach".
Grant turned 3 and started preschool and most importantly is now potty trained after what was undoubtedly one of the longest and most frustrating weekends of my life. We went straight to underwear and went through about 20 pairs a day, having basically no success for three days. I finally gave up on Monday and put him back into a diaper at which point he said "Mom, the tinkle is coming, let's run to the bathroom". I guess he had to prove he could hold out longer them me. I don't want to jinx it, but he has done really well since then. We are now working on aim so the bathroom doesn't always smell like a latrine. We actually need a new toilet in the bathroom they use and I joked that with 3 boys we should just install a urinal and be done with it. Being potty trained just in the nick of time to start preschool was good, because he really, really liked it the first two day he went. He just looked so proud to be a big kid. He is now repeating over and over the steps to write a U and Kyle is like "Ok Grant, we've got it".
As for Jason and I we are about the same. I am hoping to start working again soon. I am actually "practicing" working right now since with Kyle's half day kindergarten and Grant in preschool it works out best for my Mom just to stay here in the morning, so I will need to be disciplined enough to stay in my office during that time. It hasn't been bad so far, Ryan is a pretty good napper which makes things go pretty smooth most of the time. The best thing is that instead of taking time out to pump, I can just take time out to feed him. Jason is still working alot and just completed (with lots of help from his dad) some major repairs on the front of the house where two leaking windows caused some major damage. Oh the joys of home ownership. Our next fun things to spend money on are a new toilet an radon mitigation system for the basement. I feel lucky that Jason is so good at fixing things like that and that we also have his dad around to help.
Thanks to all who have asked about and prayed for Ryan. I am going to try to start posting updates more frequently (and less lengthy). I have always wanted to keep a record of the funny things my kids say and do as they grow up but have never been able to keep it going. A few a my friends say that for some reason, using a blog makes it easier so we will see.
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