We got to enjoy a very successful and productive weekend with our little warrior. His lipids and other IV's were removed and we attempted feeding him for the first time. The most important thing for him right now is to eat and grow. Owen responded and took to the bottle pretty quickly. We were very pleased and impressed. We started out with a small amount and increased it as he improved and grew hungrier.
This was a big step for Owen because he needed to show he could eat on his own or they would have to put an NG (Nasal Gastric) tube in so he could get all his calories. Obviously, we wanted to avoid that, so we were pretty proud of quickly he took to it.
Owen got some more loving from his visitors over the weekend. There is no doubt that Owen has a ton of unbelievable people who care about him.
Because we are a little obsessed, we can't get over every little things he does. We have already taken hundreds of pictures of every movement and sleep position.
We knew that the week ahead would bring more answers, and we would be lying if that wasn't a little scary, but we put those thoughts to the side and just enjoyed being a family of three.
Monday brought the news that Owen was going to have his feedings increased from an ounce to and ounce and a half. He had to get more calories, and this obviously meant that the NG tube that had been postponed a few days prior, was back on the table. He had not eaten that well in the morning, so they allowed him two more feeds to see if he could bounce back and handle the larger amount. He tried his hardest, but an ounce seemed to be the magic number for him. He would wear himself out working for the ounce and would be completely exhausted at that point. It was pretty clear the way things were trending.
It was tough finally seeing an obstacle that Owen was struggling with. The NG tube would be for the best, but we didn't want him to be uncomfortable with a tube taped to his face and going through his nose into his stomach. It was a little emotional at first, but we had at to get it together and know that it was going to make him stronger.
He was now going to get his full feedings. It was a little annoying for him, but after a little while he got used to it. He still seems to find it and grab it, but he doesn't seem too uncomfortable.
On Friday when we were told about his surgery scheduled for Wednesday, they told us that Dr. Morales would be around to talk to us on Monday. After talking to a few of the cardiologists, it sounded like they had jumped the gun with telling us about the surgery being scheduled. The big conference was on Tuesday with all the doctors and they would come to a consensus on how to proceed. We did not end up meeting with Dr. Morales, which made us feel like the surgery was probably not going to happen. The meeting on Tuesday would tell us for sure.
We heard from the doctors later in the morning on Tuesday. There was not going to be a surgery on Wednesday. Owen's complicated little heart was doing ok and there was no need to rush into a surgery. They wanted to gather more information before deciding. They want to see if they could hold off on surgery for 3-4 months, which would be the Glenn Procedure and then he would likely need only one more surgery after that, the Fontan Procedure at 3-4 years old. The determining factor is whether or not he is getting too much blood flow into his lungs. If there is, they will need to do a surgery in his week 2-4 of life. This would be to put a band on his vein that takes blood to his lungs. They would also repair his TAPVR at that time. He would then need the Glenn and Fontan after that at 3-4 months and 3-4 year, respectively.
The doctors confirmed that they could not locate a spleen, though they may still run a test to see if he has polysplenia, which is the presence of multiple little spleens that could be functioning. He is currently taking Amoxicillin to help prevent infections that he would be an elevated risk of getting. They still had not seen the pancreas and gall bladder, but they felt based on his body functions that they were in there somewhere. They didn't feel the need to go on a goose chase to locate them because all signs point to them being present. It did not sound like there would need to be any other corrective actions to his organs. They were functioning, and even though some are out of the normal place, they would work just fine.
We were relieved that we wouldn't have surgery the next day. We know the day is coming, but we want to delay it as long as possible. Owen was scheduled for an MRI on Wednesday to get a better view of his veins and to get more information on the blood flow to his lungs. This would be another piece to the puzzle and they also would monitor his behavior for the rest of the week. They did tell us that one sign that he has too much blood flow to his lungs is how tired he gets after eating the one ounce.
Michelle's friend Colleen, made a wonderful print for Owen that Michelle opened on Tuesday night. The uplifting things that people have done continue to be amazing. This will look wonderful in Owen's room.
It will look really great with this drawing that was done by the brother of a friend, Kelly Brown, who did his own adaptation of Owen with a bee on his nose.
Wednesday came and I went back to work. It was extremely difficult leaving Owen and Michelle alone. Of course, Michelle handled it like a champ. We are working on getting her to sleep a little more between everything going on, but she is stubborn as a mule and refuses to put Owen in his crib and taking a nap for herself. She definitely has the motherly instinct.
Owen had his MRI at 10 in the morning and handled it with ease. The kid is already so brave and been through so much. When Owen came back, I started getting some updates and pictures. At Owen's first feeding after the MRI, he drank an ounce and a half (45 ml's) all by himself! No feeding tube! I could feel the happiness through my phone. I had tears in my eyes. What a warrior. He wants to get the feeding tube out as soon as possible and avoid that first surgery. He hadn't eaten in awhile, so we tried not to get ahead of ourselves, but every little bit of progress is special. Here is Owen after crushing the bottle on his own.
The next feeding would tell us a little more, but at least we knew he had the strength to do it. Michelle let me know that they wanted to up him to 50 ml's. They are really testing the little warrior. He responded by downing the whole thing again. I was at the hospital for the next feeding and he did 50 ml's again. He is a badass. Here he is showing off after his third full feeding.
He had an absolutely wonderful day. He even helped the nurse listen to his heart beat.
Thank you again to everyone that has shown support. It has truly been overwhelming. We had a great homemade dinner from Michelle's Aunt Lori and Uncle Charlie that really hit the spot Tuesday night. We could probably open a convenience store in Owen's room with all the snacks we have received. I can't thank you all enough for all the support.
I will try and update when we get a better idea of the next step whether it be a surgery in the next couple of weeks or to keep trying to get him big and strong for his Glenn in a couple of months. Please keep Owen in your prayers and know that he will continue to fight like a little warrior.
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