After 6 long weeks in the hospital, Nicholas was finally able to come home! I meant to update this much, much sooner, but things have been super busy since we've been home. Nicholas still has to be on 3 heart meds for now, but hopefully it's not long term. He also has to be on the special formula, Portagen, for 6 weeks and then we can go back to breast milk.
We have a follow-up appointment on Wednesday (9/22) with his cardiologist. We will also get an x-ray done before that appointment to make sure there is no fluid build-up in his chest cavity. I am pretty nervous, but I think everything is going well. Nicholas is very smiley and happy and content. I love my baby boy and am beyond thrilled to have him back home with us.
Friday, September 17, 2010
Tuesday, September 7, 2010
Day 36 - 1
I've been awful at updating this thing.
Yes, we are still here at the hospital. Not a whole lot is new. Nicholas STILL has the right chest tube in. They repositioned it yesterday morning because the fluid was mostly leaking out into the dressing (and onto the bed!) instead of going in the tube like it is supposed to. So now we just wait some more until they determine the output is low enough to get it out altogether.
He is completely weaned off of one of his heart medicines, Milrinone, as of today. The rest of his meds they have converted to where he can take them by mouth or in his feeding tube. Now the only thing they need the central line for is to draw blood for labs.
We are trying to get him to take his formula out of a bottle now so that he doesn't have to come home on the feeding tube. I went to Whole Foods over the weekend to try to find more options to add to the formula to make it taste better. While I was gone, Josh was able to feed Nicholas a few bites of sweet potato baby food. Then a short while later, the doctor decided she wanted to try giving him a bottle of diluted apple juice to see whether it was the bottle he didn't like or the formula. He did drink 2 ounces of the apple juice, so it's definitely the formula he hates. When I got back from the store, Nicholas had a few red splotches on his face, which quickly turned into hives all over his body. Poor baby. Now we are not sure if it was the sweet potatoes or the apple juice that he was allergic to.
At Whole Foods I bought some cinnamon sugar and he actually seems to not completely hate the formula with that in it. He drank some yesterday for Josh, but then promptly threw up. I think he may have just drank it too quickly though. This is a learning experience for all of us.
Yes, we are still here at the hospital. Not a whole lot is new. Nicholas STILL has the right chest tube in. They repositioned it yesterday morning because the fluid was mostly leaking out into the dressing (and onto the bed!) instead of going in the tube like it is supposed to. So now we just wait some more until they determine the output is low enough to get it out altogether.
He is completely weaned off of one of his heart medicines, Milrinone, as of today. The rest of his meds they have converted to where he can take them by mouth or in his feeding tube. Now the only thing they need the central line for is to draw blood for labs.
We are trying to get him to take his formula out of a bottle now so that he doesn't have to come home on the feeding tube. I went to Whole Foods over the weekend to try to find more options to add to the formula to make it taste better. While I was gone, Josh was able to feed Nicholas a few bites of sweet potato baby food. Then a short while later, the doctor decided she wanted to try giving him a bottle of diluted apple juice to see whether it was the bottle he didn't like or the formula. He did drink 2 ounces of the apple juice, so it's definitely the formula he hates. When I got back from the store, Nicholas had a few red splotches on his face, which quickly turned into hives all over his body. Poor baby. Now we are not sure if it was the sweet potatoes or the apple juice that he was allergic to.
At Whole Foods I bought some cinnamon sugar and he actually seems to not completely hate the formula with that in it. He drank some yesterday for Josh, but then promptly threw up. I think he may have just drank it too quickly though. This is a learning experience for all of us.
Friday, September 3, 2010
Day 32 - 1
Nicholas had a great day today.
Last night be did have a bit of output out of his chest tube (about 35 mL). But today he's only had about 5 mL out. The doctors said his chest x-ray this morning looked great though. The side without the chest tube is actually clear now! He's been pretty happy and smiley all day. He really seems to be feeling a lot better. His heart rate has been down a lot from what it's been, probably because he is feeling better. It's just so good to see him happy.
We tried to give him a bottle today. We put some grape concentrate in the formula and I think it helped. He didn't drink much, but he did drink some (about a 1/2 ounce) and he wasn't gagging or spitting it up or anything. He actually seems to be tolerating the formula much better now. I just hope he really starts eating out of the bottle so we don't have to take him home on the feeding tube.
Last night be did have a bit of output out of his chest tube (about 35 mL). But today he's only had about 5 mL out. The doctors said his chest x-ray this morning looked great though. The side without the chest tube is actually clear now! He's been pretty happy and smiley all day. He really seems to be feeling a lot better. His heart rate has been down a lot from what it's been, probably because he is feeling better. It's just so good to see him happy.
We tried to give him a bottle today. We put some grape concentrate in the formula and I think it helped. He didn't drink much, but he did drink some (about a 1/2 ounce) and he wasn't gagging or spitting it up or anything. He actually seems to be tolerating the formula much better now. I just hope he really starts eating out of the bottle so we don't have to take him home on the feeding tube.
Thursday, September 2, 2010
Day 31 - 1
Last night and all day today his output has been minimal! I don't want to get my hopes up too much, but who am I kidding, they are way up. Hopefully the next day or two is the same and he can get the chest tube out. Then I could hold him and cuddle him. That would be amazing!
His fever seems to be gone. His heart rate also seems to be lower now, which is good. He does still seem pretty gassy and cries in pain from that. I'm not sure if that is because of the formula or what. He was gassy while on the breast milk too though.
Wednesday, September 1, 2010
Day 30 - 1
I forgot to mention that yesterday Nicholas got his second tooth! So cute!
This morning, they had to change his central line because they could not draw blood out of it. They had adjusted it the other day because it hadn't been working and it was a bit better, but I guess it wasn't working again. They are putting him on a low dose of blood thinner now to hopefully keep the line open. Poor guy has been through so much.
When I got here this morning, I looked at his output. Josh told me on the phone that it was 99 mL at 7 AM. When I got here around 8:30 AM, it was at 145 mL! That is a huge jump in such a short time. I am still so upset that the breast milk has set him back this much. I know that we can't go back and change it, so no sense in dwelling on it, but I can't help it.
This morning, they had to change his central line because they could not draw blood out of it. They had adjusted it the other day because it hadn't been working and it was a bit better, but I guess it wasn't working again. They are putting him on a low dose of blood thinner now to hopefully keep the line open. Poor guy has been through so much.
When I got here this morning, I looked at his output. Josh told me on the phone that it was 99 mL at 7 AM. When I got here around 8:30 AM, it was at 145 mL! That is a huge jump in such a short time. I am still so upset that the breast milk has set him back this much. I know that we can't go back and change it, so no sense in dwelling on it, but I can't help it.
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