It's been nearly one week since Alivia turned 1. It has been quite an eventful week, not exactly for the best of reasons. But I'll get into that in a minute. First, let's focus on the positive.
Alivia's birthday was wonderful. To be able to celebrate her first year amongst family and friends was an answered prayer. When she was hospitalized, we saw more than one baby celebrate his/her first birthday in the ICU. Among the many prayers I had during those days was the hope that she'd be celebrating her first birthday at home, happy and healthy. And she did.
We began the day at church with our parents and siblings to celebrate Alivia's baby dedication with several other families. It was so cute - the coordinators left no detail forgottten. Each child had a diaper cake, printed prayers with their names incorporated, decorations with their names, and a soft lamb lovie with their name and birthday embroidered. We ate, gathered for a brief sermon, watched a cute video of all the kids, pledged to raise our babies to know God, and then headed home.
Alivia's party was great. She strutted around with her birthday tutu most of the afternoon. :-) My grandma and cousin made the trip down from Chicago, making the day even more special for us. Alivia got tons of cute colorful outfits for the spring, some fun toys, her first necklace, and a princess throne. It truly was a wonderful day for her (and us!).
It definitely was the highlight of the week because the rest of it - both before and after - was NOT fun. About four days before her birthday, Alivia became extra gaggy and no longer could tolerate her bottle. We switched to a sippy cup to alleviate that issue, but she clearly was not herself. In addition to gagging to the point she'd throw up more often, which she hadn't done in weeks, she was throwing up simply from drinking or eating something - no gagging involved, which never happens. She vomited one to three times per day, every day. She was clearly losing weight, but still eating about as much as she normally did. She just couldn't keep it all down.
By Sunday, though, her appetite was worse and we could tell she didn't feel well. By the evening, we had sent Tyler to his grandparents house and were on edge. After she threw up the third time, we started calling doctors. We called both the local cardiologist on call and St. Louis' cardiology resident. After talking with them about how Alivia was acting, they both felt like it wasn't her heart causing the issue since she was showing no other signs of heart trouble. So we decided to just get her in with her cardiologist first thing Monday morning to rule it out in person.
On Monday morning, she woke up sick, before even consuming anything, which she'd never done before. While we waited to get in with the cardiologist, we visited her feeding therapist. By then, she was keeping foods in for the most part and did pretty well there. Her cardiologist saw her soon after and felt good about the heart likely not being the culprit. He ordered bloodwork, and that provided additional evidence that the heart was OK.
As this point, we had three guesses for the cause of this all: a virus (albeit a weird-acting one), a reflux flare up, or a side effect of her new heart medication we had started 10 days prior (a couple days before her symptoms started). We reduced the new heart med to a half-dose per day and resumed her old med to see if that made a difference.
It didn't seem to. Tuesday morning started much of the same way, and she was barely eating anything. So we saw her ped, confirmed she had lost weight, and headed to the local children's hospital for fluids. In the meantime, while we waited for a bed to open, she began drinking Pedialyte and kept it down. So she finally began to pee (she had gone maybe 7 hours without a drop coming out). After we checked in, she kept drinking, which was good because the staff there tried but failed (twice) to put in an IV to start fluids. And since her fluid drip would be a bit less than a normal child's since we have to be careful about the increase in blood pressure IV fluids can cause, the doctors let us hold off on an IV if she kept drinking.
Can I tell you how great it was to not have a single line/tube on our daughter the entire night?! She was able to turn the corner on her own and keep all fluids down. We also totally stopped the new heart med. She woke up Wednesday back to her cheery self, and was HUNGRY. We slowly reintroduced formula and all went well. They let us go home later that day.
Now, she's busy catching up for lost time. She's practically demanding formula and food. We revisited her ped today, and she's gained back 5 ounces of the 8-9 she lost already! We still aren't sure what caused all this - the med seems very likely due to the timing of it all, but a virus is still possible. I guess we'll know if one of us falls ill soon, or when we retry the new med in a few months.
We are SO GLAD to have our happy baby back! That was our first real scare since her diagnosis, and we're grateful her heart withstood it all, whatever it all was.
I'll post her one-year stats soon. With all this going on, we haven't taken her monthly pic yet! Thanks to you all who prayed for her this past week, and always.
Alivia's birthday was wonderful. To be able to celebrate her first year amongst family and friends was an answered prayer. When she was hospitalized, we saw more than one baby celebrate his/her first birthday in the ICU. Among the many prayers I had during those days was the hope that she'd be celebrating her first birthday at home, happy and healthy. And she did.
We began the day at church with our parents and siblings to celebrate Alivia's baby dedication with several other families. It was so cute - the coordinators left no detail forgottten. Each child had a diaper cake, printed prayers with their names incorporated, decorations with their names, and a soft lamb lovie with their name and birthday embroidered. We ate, gathered for a brief sermon, watched a cute video of all the kids, pledged to raise our babies to know God, and then headed home.
Alivia's party was great. She strutted around with her birthday tutu most of the afternoon. :-) My grandma and cousin made the trip down from Chicago, making the day even more special for us. Alivia got tons of cute colorful outfits for the spring, some fun toys, her first necklace, and a princess throne. It truly was a wonderful day for her (and us!).
It definitely was the highlight of the week because the rest of it - both before and after - was NOT fun. About four days before her birthday, Alivia became extra gaggy and no longer could tolerate her bottle. We switched to a sippy cup to alleviate that issue, but she clearly was not herself. In addition to gagging to the point she'd throw up more often, which she hadn't done in weeks, she was throwing up simply from drinking or eating something - no gagging involved, which never happens. She vomited one to three times per day, every day. She was clearly losing weight, but still eating about as much as she normally did. She just couldn't keep it all down.
By Sunday, though, her appetite was worse and we could tell she didn't feel well. By the evening, we had sent Tyler to his grandparents house and were on edge. After she threw up the third time, we started calling doctors. We called both the local cardiologist on call and St. Louis' cardiology resident. After talking with them about how Alivia was acting, they both felt like it wasn't her heart causing the issue since she was showing no other signs of heart trouble. So we decided to just get her in with her cardiologist first thing Monday morning to rule it out in person.
On Monday morning, she woke up sick, before even consuming anything, which she'd never done before. While we waited to get in with the cardiologist, we visited her feeding therapist. By then, she was keeping foods in for the most part and did pretty well there. Her cardiologist saw her soon after and felt good about the heart likely not being the culprit. He ordered bloodwork, and that provided additional evidence that the heart was OK.
As this point, we had three guesses for the cause of this all: a virus (albeit a weird-acting one), a reflux flare up, or a side effect of her new heart medication we had started 10 days prior (a couple days before her symptoms started). We reduced the new heart med to a half-dose per day and resumed her old med to see if that made a difference.
It didn't seem to. Tuesday morning started much of the same way, and she was barely eating anything. So we saw her ped, confirmed she had lost weight, and headed to the local children's hospital for fluids. In the meantime, while we waited for a bed to open, she began drinking Pedialyte and kept it down. So she finally began to pee (she had gone maybe 7 hours without a drop coming out). After we checked in, she kept drinking, which was good because the staff there tried but failed (twice) to put in an IV to start fluids. And since her fluid drip would be a bit less than a normal child's since we have to be careful about the increase in blood pressure IV fluids can cause, the doctors let us hold off on an IV if she kept drinking.
Can I tell you how great it was to not have a single line/tube on our daughter the entire night?! She was able to turn the corner on her own and keep all fluids down. We also totally stopped the new heart med. She woke up Wednesday back to her cheery self, and was HUNGRY. We slowly reintroduced formula and all went well. They let us go home later that day.
Now, she's busy catching up for lost time. She's practically demanding formula and food. We revisited her ped today, and she's gained back 5 ounces of the 8-9 she lost already! We still aren't sure what caused all this - the med seems very likely due to the timing of it all, but a virus is still possible. I guess we'll know if one of us falls ill soon, or when we retry the new med in a few months.
We are SO GLAD to have our happy baby back! That was our first real scare since her diagnosis, and we're grateful her heart withstood it all, whatever it all was.
I'll post her one-year stats soon. With all this going on, we haven't taken her monthly pic yet! Thanks to you all who prayed for her this past week, and always.
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