Our most cath admission back in June was a dream. I can't believe I'm saying dream and admission in the same sentence, but almost everything went right. When we started this journey with Reya back in November, I expected smoother sailing, mostly because she was bigger and stronger than Hope was when she went for surgery. I failed to take Mireya's feisty nature and complicated anatomy into account.
I often find myself reflecting upon that first admission, but found myself more reflective during this last cath. Ironically, for this past admission, during the day we had the same nurse (Kaitlyn) that we had when we were first admitted back in November. She and I were reminiscing a little bit about how much trouble Reya gave them when we arrived here for that first surgery. It's been a rocky road, but she really has come far, and this past admission was a great indicator of how much progress she's made. To put it in the words of her cath doctor, "she's starting to look like a keeper".
He's a character, Dr. Lock. He's starting to grow on me. We learned at this most recent cath that he was one of the first doctors to start working on MAPCAs at Boston Children's Hospital back in the 80s, so he is a veteran. But he's also a man of little words and glass half empty kind of guy, giving you the negative scenarios first. He talks very fast and doesn't dumb anything down, talking to you like a medical professional. He blows in and out and doesn't really allow the opportunity for questions. Chris asked him something and he looked shocked that we were asking him a question. This was Chris' first encounter with him and we both chuckled after he walked away. It's kind of one of those "what just happened?" scenarios. We are able to follow most of what he says, but I always feel like I need a review and clarification, which luckily, Dr Friedman is very good about doing. Back in March, Dr Lock was the one to tell me Mireya had pneumonia. After this most recent cath, he walked in and told us her left lung was a mess and her conduit was severely obstructed. He was able to improve the flow through her conduit and into her left pulmonary artery as well as dilate some of the other vessels as well. At the end of his very short visit with us, he was finally able to give us the positive - "she's starting to look like a keeper", as in he's finally gotten her to a place where her future looks good.
Our stay for the cath was short and mostly sweet. We got a decent room. A window bed with no roommate for the duration of our stay. Reya's recovery was easy. The cath was on Tuesday, we came home on Wednesday and by Thursday, you would have had no clue it even happened. She was a little fussy immediately post-cath, most likely because she was tired and hungry. She had a pretty decent night's sleep and took two naps while waiting for discharge, which was pretty early. I even slept pretty well in my pull out chair. Mireya was feeling so well that we went out to Walden Pond to enjoy a beautiful day, two days post-cath (don't worry, she didn't go swimming!). Hope was more out of sorts than Reya was.
The only hiccup we had was with the GI appointment I had cancelled the day before the cath. When we finished all of our pre-op stuff on Monday, there was a two hour window until her GI appointment. I asked pre-op to see if they could see us sooner or if they could come see us inpatient. They said they would catch us inpatient. Well, I started asking as soon as we got up to the floor after the cath. They said that they would come up around 11. 11 came and went and then they told me that they would do what I'm asking them to do at our 3 month follow-up. Funny, because that is the appointment I cancelled. GI never showed up and weren't returning the NP's (Nurse Practioner) phone calls. They ended up discharging us and sending over to GI to see if they would do it for us right there. I got down there, and there was no one to do it, so they booked us an appointment for the following Monday, when we were already scheduled for an appointment with a different department in Waltham. It was very frustrating as we would have been discharged far earlier and home before lunch had we not waited for GI. It was especially frustrating given it was the first thing I asked about when we came upstairs.
The cath was on June 6. We had the GI appointment and ORL (the vocal cord doctor) the following Monday. We didn't have ANY doctor's appointments between that visit on June 12 and July 10! That is the longest we have gone without a doctor's appointment since Mireya's diagnosis last MAY. The GI appointment was simple - it was just a tube change with a nurse practitioner. She changed out Reya's g-tube, explaining to me how it was done. I am not able to do it myself yet, they will teach me that at our next follow-up in October, but in an emergency situation, if it were to come out, I would know how to put a new one in, instead of having to rush to the ER at 9PM on a Sunday night like I did back in May. The simplicity of this appointment made our experience with the GI department the week of the cath even more frustrating. As a whole, I have not been overly impressed with GI. I find them disorganized and not at all like cardiology, which is obviously our home base at BCH. I feel like we are the "away team" when we visit GI, whereas cardiology we are definitely on the "home team". Even though it is a huge department, I recognize most of the cardiology staff both in Boston and Waltham. At GI I don't know anyone and the unknown is unsettling. Up until a month or two ago, I didn't even know who our GI doctor was...lol. Fortunately, we only have to deal with them every few months.
Our ORL visit was interesting. The doctor we see, Dr Lee, is young and the best I can describe him is "very clinical". He is nice, to me and my kids, but not overly warm and fuzzy. Back in February, he would not do a scope until he heard back from Dr Friedman that it was safe. He was clearly afraid of my heart baby, especially because I see him Waltham, far away from the safety of the hospital. This visit was a follow-up from our visit back in February, to check to see if her vocal cord was still compromised. This is done by scoping her throat with a camera through her nose. Its interesting to watch and I was able to get the answer myself right away. The answer is that her left cord is still not completely functioning. When she gasped for air (because she was screaming), we saw some movement, but in general it is immobile. But the most interesting part of this visit was not what we went in for. Upon doing the scope, he noticed that she had either swallowed or inhaled a blade of grass (she had been eating grass by the handful at a birthday party on Saturday) and it was stuck in her nasal cavity. He was insistent that he had to get it out because he was afraid it would get into her lungs and cause some problems. He tried going in with some needle nose tweezers. She didn't much care for that...lol. So he had to strap her down in a straight jacket attached to a board. It was pretty traumatic. But he was able to get it. Thank God, because if he hadn't, we would have been sent to the OR. Thanks, but no thanks.
We had our one month post cath follow-up with cardiology in July. Everyone remarked at how great she looked. Her sats were good, her weight is up and overall, a positive visit. Next cath is set for October 20. We have had very few appointments since - just the feeding specialist and the neurodevelopmental team. The feeding specialist thought she was doing great. Her feeding skills are caught up to age appropriate skills but we do need to work on motivation and stamina. She was cleared to try thin liquids and so far, she is doing great taking milk from a straw cup! The neurologist was so impressed by how far she has come. Looking at the notes over the last few months, she expected a skinny sickly baby that was far behind on her milestones. Instead, she saw a sort of chunky, happy baby who is rapidly catching up. She is still slightly behind in her motor skills, but doing great from a cognitive and verbal perspective.
The cath was on June 6. We had the GI appointment and ORL (the vocal cord doctor) the following Monday. We didn't have ANY doctor's appointments between that visit on June 12 and July 10! That is the longest we have gone without a doctor's appointment since Mireya's diagnosis last MAY. The GI appointment was simple - it was just a tube change with a nurse practitioner. She changed out Reya's g-tube, explaining to me how it was done. I am not able to do it myself yet, they will teach me that at our next follow-up in October, but in an emergency situation, if it were to come out, I would know how to put a new one in, instead of having to rush to the ER at 9PM on a Sunday night like I did back in May. The simplicity of this appointment made our experience with the GI department the week of the cath even more frustrating. As a whole, I have not been overly impressed with GI. I find them disorganized and not at all like cardiology, which is obviously our home base at BCH. I feel like we are the "away team" when we visit GI, whereas cardiology we are definitely on the "home team". Even though it is a huge department, I recognize most of the cardiology staff both in Boston and Waltham. At GI I don't know anyone and the unknown is unsettling. Up until a month or two ago, I didn't even know who our GI doctor was...lol. Fortunately, we only have to deal with them every few months.
Our ORL visit was interesting. The doctor we see, Dr Lee, is young and the best I can describe him is "very clinical". He is nice, to me and my kids, but not overly warm and fuzzy. Back in February, he would not do a scope until he heard back from Dr Friedman that it was safe. He was clearly afraid of my heart baby, especially because I see him Waltham, far away from the safety of the hospital. This visit was a follow-up from our visit back in February, to check to see if her vocal cord was still compromised. This is done by scoping her throat with a camera through her nose. Its interesting to watch and I was able to get the answer myself right away. The answer is that her left cord is still not completely functioning. When she gasped for air (because she was screaming), we saw some movement, but in general it is immobile. But the most interesting part of this visit was not what we went in for. Upon doing the scope, he noticed that she had either swallowed or inhaled a blade of grass (she had been eating grass by the handful at a birthday party on Saturday) and it was stuck in her nasal cavity. He was insistent that he had to get it out because he was afraid it would get into her lungs and cause some problems. He tried going in with some needle nose tweezers. She didn't much care for that...lol. So he had to strap her down in a straight jacket attached to a board. It was pretty traumatic. But he was able to get it. Thank God, because if he hadn't, we would have been sent to the OR. Thanks, but no thanks.
We had our one month post cath follow-up with cardiology in July. Everyone remarked at how great she looked. Her sats were good, her weight is up and overall, a positive visit. Next cath is set for October 20. We have had very few appointments since - just the feeding specialist and the neurodevelopmental team. The feeding specialist thought she was doing great. Her feeding skills are caught up to age appropriate skills but we do need to work on motivation and stamina. She was cleared to try thin liquids and so far, she is doing great taking milk from a straw cup! The neurologist was so impressed by how far she has come. Looking at the notes over the last few months, she expected a skinny sickly baby that was far behind on her milestones. Instead, she saw a sort of chunky, happy baby who is rapidly catching up. She is still slightly behind in her motor skills, but doing great from a cognitive and verbal perspective.
So those are the most recent medical updates. I'd say since she kicked the cold she had back in May, it has been pretty smooth sailing. Smooth sailing and a life free of doctor's appointments allows for a lot of forward progress. So now for the exciting, regular baby stuff!
Most exciting - she's eating like a champ! Ever since discovering sand on the beach in Ocean City on Memorial Day weekend, she has been eating more and more. Her weight gain has been fantastic and she is up to 9% on the charts. I know, that sounds low, but when we went in for the first surgery she was 3% and when we brought her home in December, at 8lbs3oz, she wasn't anywhere near the charts. Hope is still only 4-5%. Chris and I were both small kids. I don't expect her to be big. We had a little slump around the cath, but things are so good now that we have dropped two of her tube feeds. This gives us a lot more freedom and we no longer need to lug the feeding pump unless we're going to be out all day. At 10 months, she weighed 15lbs10oz, and was about the same as Hope did at the same age. Now, at 11 months, she is up to 16lbs5oz. Anyway, I started to feel pretty confident that between nursing and eating solids, she was getting the calories she needed from that extra feed. Her feeds run every 5-6 hours now, so it is also allowing for her to get hungry in between feeds, which gives her more motivation to eat. Since we dropped the feeds, she has been eating more and even drinking from a straw cup. I'm starting to feel optimistic for being mostly off daytime feeds when I go back to work. She may require one daytime feed, but my hope is that it won't require me to lug the pump to daycare every day. She will also hopefully be drinking cow's milk by then, so if all goes well, it will make packing for daycare relatively low maintenance. So far, she has continued to gain even with the dropped feeds, so that's a good sign.
Another exciting update - she's on the move! Just like Hope, she has chosen butt scooting as her method of movement. She just started moving at the end of July, so she is about a month behind Hope, but she's already trying to figure out crawling and possibly even trying to figure out how to pull up, so I think she's going to catch up fast. And boy is she fast. She has been so proud of herself. The first day she was on the move, she scooted all over the house checking out every last corner and pulling out every last toy. She's very busy and into everything.
She is making a ton of vocalizations, intonation and all. She has whole conversations with herself and with us. I remember Hope talking a lot, but I don't remember her having these types on conversations this young. It is pretty hilarious. She has angry noises where she sounds like she's cursing us out and happy joyful noises. She also has a few words with meaning attached - "mama" "dada" "bye" and I could swear she's saying something for Sanders.
Finally, she has her bottom two teeth with 3 or 4 more popping through up top. We discovered them on the 4th of July and just noticed the others this past week. Once again, she is behind Hope on this, by about a month. It's funny, it has completely changed how she "talks" and where she puts her tongue. She's like a different kid since we discovered the teeth.
Overall, she is a happy, funny baby. She is a character. She knows how to wave "hi" and "bye" and is starting to clap. When we were in for the cath, she had a chest x-ray immediately post-cath. This is one of her least favorite activities at the hospital. After we picked her up to go back up to our room, she immediately stopped crying and started waving "bye", kind of like, see you later, I'm out of here! She "dances" by swaying back and forth. She gives kisses. She loves stuffed toys, especially her bunny. She already covets Hope's dolls, hugging and kissing them. She still adores her big sister and Sanders. But possibly my favorite thing about her is her snuggles. Every time I pick her up, she snuggles in for a good hug and sometimes a kiss. She won't snuggle for a long time, and doesn't really like to cuddle or sleep in our arms, or even sit in our laps for a long time, but she gives the best hugs when you pick her up.
I completely adore her (obviously) in a completely different way than I adore Hope. Its funny how things come into your life at just the right time. Hope is a fierce, independent fighter. But she's also happy go lucky and a breath of fresh air that came at a time when we were struggling for air. Reya is the storm along with the subsequent rainbow that came after the breath of fresh air. She came into the world much more quickly (should have known then), and has had a much longer and harder road, but somehow she is silly, happy, and more fun than anything I've ever known. I don't know that I could have handled the stress I felt from Reya's journey without having Hope first. Hope has continued to be my breath of air, but Reya is the comic relief (even though she is usually the one causing all the stress!). Sometimes, I think she's like a hurricane, but that's not a positive enough analogy since nothing good comes from a hurricane. She's always causing trouble and wreaking havoc. She has to touch everything. Then you look at her, and you just have to smile. I'm terrified of when she starts really moving.
Life is good right now. Moving way too fast, but really good.
Most exciting - she's eating like a champ! Ever since discovering sand on the beach in Ocean City on Memorial Day weekend, she has been eating more and more. Her weight gain has been fantastic and she is up to 9% on the charts. I know, that sounds low, but when we went in for the first surgery she was 3% and when we brought her home in December, at 8lbs3oz, she wasn't anywhere near the charts. Hope is still only 4-5%. Chris and I were both small kids. I don't expect her to be big. We had a little slump around the cath, but things are so good now that we have dropped two of her tube feeds. This gives us a lot more freedom and we no longer need to lug the feeding pump unless we're going to be out all day. At 10 months, she weighed 15lbs10oz, and was about the same as Hope did at the same age. Now, at 11 months, she is up to 16lbs5oz. Anyway, I started to feel pretty confident that between nursing and eating solids, she was getting the calories she needed from that extra feed. Her feeds run every 5-6 hours now, so it is also allowing for her to get hungry in between feeds, which gives her more motivation to eat. Since we dropped the feeds, she has been eating more and even drinking from a straw cup. I'm starting to feel optimistic for being mostly off daytime feeds when I go back to work. She may require one daytime feed, but my hope is that it won't require me to lug the pump to daycare every day. She will also hopefully be drinking cow's milk by then, so if all goes well, it will make packing for daycare relatively low maintenance. So far, she has continued to gain even with the dropped feeds, so that's a good sign.
Another exciting update - she's on the move! Just like Hope, she has chosen butt scooting as her method of movement. She just started moving at the end of July, so she is about a month behind Hope, but she's already trying to figure out crawling and possibly even trying to figure out how to pull up, so I think she's going to catch up fast. And boy is she fast. She has been so proud of herself. The first day she was on the move, she scooted all over the house checking out every last corner and pulling out every last toy. She's very busy and into everything.
She is making a ton of vocalizations, intonation and all. She has whole conversations with herself and with us. I remember Hope talking a lot, but I don't remember her having these types on conversations this young. It is pretty hilarious. She has angry noises where she sounds like she's cursing us out and happy joyful noises. She also has a few words with meaning attached - "mama" "dada" "bye" and I could swear she's saying something for Sanders.
Finally, she has her bottom two teeth with 3 or 4 more popping through up top. We discovered them on the 4th of July and just noticed the others this past week. Once again, she is behind Hope on this, by about a month. It's funny, it has completely changed how she "talks" and where she puts her tongue. She's like a different kid since we discovered the teeth.
Overall, she is a happy, funny baby. She is a character. She knows how to wave "hi" and "bye" and is starting to clap. When we were in for the cath, she had a chest x-ray immediately post-cath. This is one of her least favorite activities at the hospital. After we picked her up to go back up to our room, she immediately stopped crying and started waving "bye", kind of like, see you later, I'm out of here! She "dances" by swaying back and forth. She gives kisses. She loves stuffed toys, especially her bunny. She already covets Hope's dolls, hugging and kissing them. She still adores her big sister and Sanders. But possibly my favorite thing about her is her snuggles. Every time I pick her up, she snuggles in for a good hug and sometimes a kiss. She won't snuggle for a long time, and doesn't really like to cuddle or sleep in our arms, or even sit in our laps for a long time, but she gives the best hugs when you pick her up.
I completely adore her (obviously) in a completely different way than I adore Hope. Its funny how things come into your life at just the right time. Hope is a fierce, independent fighter. But she's also happy go lucky and a breath of fresh air that came at a time when we were struggling for air. Reya is the storm along with the subsequent rainbow that came after the breath of fresh air. She came into the world much more quickly (should have known then), and has had a much longer and harder road, but somehow she is silly, happy, and more fun than anything I've ever known. I don't know that I could have handled the stress I felt from Reya's journey without having Hope first. Hope has continued to be my breath of air, but Reya is the comic relief (even though she is usually the one causing all the stress!). Sometimes, I think she's like a hurricane, but that's not a positive enough analogy since nothing good comes from a hurricane. She's always causing trouble and wreaking havoc. She has to touch everything. Then you look at her, and you just have to smile. I'm terrified of when she starts really moving.
Life is good right now. Moving way too fast, but really good.
