So.....this is mostly what has happened since Mateo's heart condition was found out. (There's a lot to go over since that was 9 months ago!)
He had the first open-heart surgery at 1 week old. Mel and I got to hold him, for the first time, the day before his surgery. I knew that it was most likely because they didn't know if he'd make it through the surgery and the doctors thought we should hold him while he was still alive....in case he didn't make it.....but I tried not to think of it like that, because it scared the heck out of me.
The surgery lasted for almost 8 hours. I think 1/2 the congregation we worship with showed up in support for us. It was nice to have something to take our minds off of what was actually happening, and it definitely made the time go by quicker. I was still a wreck though. Nervous as can be....and worried out of my mind. But Mateo made it through surgery with flying colors and was back in the PCICU (pediatric cardiac intensive care unit) and we finally got to see him. He looked awful, but he was doing well, so that was all I cared about. He was in the hospital until he was almost 3 months old. He had a lot of feeding issues and it seemed that once he took one step forward, he'd fall two steps back.
Mateo had a g-tube (feeding tube) put in when he was one month old. That caused a lot of issues. He was about to come home one week, but then got an infection in one of his arterial lines, and that set us back to square one. But he finally came home! Then went back the next day because he was having withdrawls from the narcotics that weren't correctly weaned before we took him home. Another couple weeks went by and we took him home again. He went back because of bloody stool...which we found out was from a milk protein intolerance. I don't think we ever had him home for longer than 2 weeks at a time before something else came up and he had to be readmitted.
Then it came time for the 2nd stage surgery...the Glenn. He got through that surgery wonderfully....even the surgeon said he was impressed at how well Mateo did. He came home a week later. A couple weeks after that, he was admitted again due to excessive vomitting. He was at the hospital again for about a week. Then we came home and I don't think was admitted to the hospital again until December.
His g-tube site had a severe infection and was leaking excessively. He was losing weight and the sore wasn't healing because it was constantly wet from the leaking. So he was admitted to be put on IV fluids and antibiotics....in the end, we had the tube removed. Mel and I were so sick of that tube. It caused way more problems than it was worth and we decided to just deal with Mateo's feeding issues. But...there really weren't any issues. Mateo ate from a spoon just fine and took from a bottle like a champ. He has continued to gain weight steadily ever since and is now, at 9 months, almost 18 lbs. And so tall! Almost 28" already.
So all in all...through out all our challenges, our little boy is doing miraculously well. We really have nothing to complain about. So many other children with HLHS have much more serious complications, and its by God's grace that Mateo is doing so well.
He had the first open-heart surgery at 1 week old. Mel and I got to hold him, for the first time, the day before his surgery. I knew that it was most likely because they didn't know if he'd make it through the surgery and the doctors thought we should hold him while he was still alive....in case he didn't make it.....but I tried not to think of it like that, because it scared the heck out of me.
The surgery lasted for almost 8 hours. I think 1/2 the congregation we worship with showed up in support for us. It was nice to have something to take our minds off of what was actually happening, and it definitely made the time go by quicker. I was still a wreck though. Nervous as can be....and worried out of my mind. But Mateo made it through surgery with flying colors and was back in the PCICU (pediatric cardiac intensive care unit) and we finally got to see him. He looked awful, but he was doing well, so that was all I cared about. He was in the hospital until he was almost 3 months old. He had a lot of feeding issues and it seemed that once he took one step forward, he'd fall two steps back.
Mateo had a g-tube (feeding tube) put in when he was one month old. That caused a lot of issues. He was about to come home one week, but then got an infection in one of his arterial lines, and that set us back to square one. But he finally came home! Then went back the next day because he was having withdrawls from the narcotics that weren't correctly weaned before we took him home. Another couple weeks went by and we took him home again. He went back because of bloody stool...which we found out was from a milk protein intolerance. I don't think we ever had him home for longer than 2 weeks at a time before something else came up and he had to be readmitted.
Then it came time for the 2nd stage surgery...the Glenn. He got through that surgery wonderfully....even the surgeon said he was impressed at how well Mateo did. He came home a week later. A couple weeks after that, he was admitted again due to excessive vomitting. He was at the hospital again for about a week. Then we came home and I don't think was admitted to the hospital again until December.
His g-tube site had a severe infection and was leaking excessively. He was losing weight and the sore wasn't healing because it was constantly wet from the leaking. So he was admitted to be put on IV fluids and antibiotics....in the end, we had the tube removed. Mel and I were so sick of that tube. It caused way more problems than it was worth and we decided to just deal with Mateo's feeding issues. But...there really weren't any issues. Mateo ate from a spoon just fine and took from a bottle like a champ. He has continued to gain weight steadily ever since and is now, at 9 months, almost 18 lbs. And so tall! Almost 28" already.
So all in all...through out all our challenges, our little boy is doing miraculously well. We really have nothing to complain about. So many other children with HLHS have much more serious complications, and its by God's grace that Mateo is doing so well.
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