Back to Normal

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.

Home Again

We are home again. Actually we were discharged last Thursday, but Ryan is on continuous oxygen, so we don't stray far from the living room. During the hospital stay, the doctor's confirmed that the right side of his diaphram is indeed not working due to nerve damage that occured during the surgery and the best plan is just to wait and see what happens. According to the surgeon's report, the nerve was identified during surgery, which means that there is a chance it will regain function, it will just take awhile (I never got a more specific timeframe). Meanwhile, Ryan is home on oxygen and has a feeding tube. He is still taking most of his feedings by bottle, but we just use the feeding tube when he gets to tired to finish. Since he is working so hard to breath and heal, he needs extra calories and can't afford to miss any. That's about all, thanks to everyone who has asked how we are doing.

Boomerang Baby

We are back in the hospital. We had a great week, but by Thursday, Ryan was having a hard time breathing and was sleeping most of the time. So Friday, I called cardiology, I called Jason, I called my friend Janet and eventually my pediatrician who had a 3:45 appointment. He agreed his breathing was labored and thought he needed to go back to CHM. I started packing up my things and he said, no, I think he should be transported. So I got to ride in the ambulance to the emergency room, the one part of the hospital we hadn't seen. Once they started oxygen in the ambulance, he felt much better. The cardiologist on call came and did and echo to make sure everything was ok with his heart, which is was. It is still just the diaphragm issue giving us problems. So here we are again, the boys and I are playing in the playroom. I am not sure what the plan is at this point, they can either try to fix the diaphragm or wait it out, cardiology was going to talk to CV surgery tomorrow. Hope everyone had a good weekend, will try to post soon.

Gaining Weight

Ryan had his first visit with his regular pediatrician on Tuesday and he weight 8 lbs 11 oz, up from 7 lbs 13 ounces when we left the hospital, so he is definitely gaining weight which is very good. The best part of this is that it means I can nurse more and pump less which makes me very happy. I asked about getting Ryan vaccinated for RSV and the pediatrician said he would try, but heart kids usually don't qualify unless they are having trouble with weight gain. I was like, "are you kidding me, he had open heart surgery 3 months before cold and flu season starts and he isn't sick enough?". We may have a better shot if the issue with his diaphragm can be documented so I will talk to the cardiologist next week and am keeping my fingers crossed. My biggest fear at this point is keeping him healthy with two older brothers in the house, one starting kindergarten and one starting preschool.

We are all adjusting to life at home. We all went for a walk Monday night, Kyle on his bike, Grant on his tricycle and Ryan in the stroller. It was a very "oh my god, we have 3 kids" moment" but we managed to make it around the block.

Home Sweet Home

We are home! Ryan was discharged on Thursday, July 3rd after 22 days in the hospital. I think that last week we spent on the floor was both the best and worst. Best because we got to stay with him all of the time but worst because things just moved much slower. When we initially transferred, people seemed to indicate we would be able to go home in a couple of days, maybe even Monday. All he really needed to prove was that he could eat and breathe without the extra oxygen. Eating was not a problem, although his appetite wasn’t nearly what it was pre-surgery. I could generally get him to take around an ounce at each feeding which wasn’t great, but would work. The oxygen proved a little tougher to shake. He was down to a very low amount (similar to the prositns pre-surgery) but just couldn’t seem to get by without it. I think I may have posted this previously, but they were thinking that one side of his diaphragm wasn’t working, probably due to a nerve being “touched” during surgery. Since this was expected to awhile to heal, the plan was to “dry out” his lungs as best they could with diuretics in order to get him off of the oxygen, so for a couple of days, he received more meds as we waited for his chest xray to show signs of improvement, which it never really did. On Wednesday, they decided to just send us home with oxygen since it would likely be awhile before he didn’t need it, which I was fine with just to get my family back in one place. That afternoon, the RT decided to try just one more time and low and behold he hung in there. They took another chest xray and this time it actually did show improvement. They had actually already delivered portable oxygen to our room for the trip home, but we were glad we didn’t need it.

Another thing that made the week more difficult was that one of his newborn screening tests came back with an abnormal result. Further testing has since revealed he is fine and in hindsight there were several reasons to believe the screening test had produced a false positive, but for several days I was paralyzed with fear and sadness. If anything it made me realize that everything is relative and things could always be worse. Actually, just being at Children’s Mercy day in and day out makes you realize how lucky you are no matter what your situation and lucky we are to be home. Kyle is for the most part indifferent, much as he was when Grant came home. He keeps his mind busy thinking about sports and playing with his friends. Grant on the other hand, can’t get enough of “my brother, Baby Ryan”. It is so cute. He is always telling him “hi”, giving him hugs, holding his binky and saying “look at those little feets”. It is just so nice to all be back in one place. Ryan is doing well, if you saw him, you would just think he was a normal newborn with some bruises on his hands and feet. He was discharges at 7 pounds 13 ounces, so he is still needs to be feed every three hours. He is amazing at switching between nursing and the bottle and we are doing more nursing each day. For now, he still needs some extra calories while he heals, so he gets at least 4 bottles a day of pumped breast milk mixed with formula. I have a follow up appointment with our primary care doctor next Tuesday and if he is gaining weight ok, we should be able to switch to mostly nursing with one bottle for his potassium and chloride supplements. We also follow up with his cardiologist in two weeks. I am not sure what will go on during that appointment, but we will see. Hope everyone had a good holiday weekend and thanks again to everyone who has sent well wishes and offered to help with the boys.