pictures

I found the cable for my camera, hooray! Here are the promised scary indian hat picutes.

Doesn't Jeremiah look like he's having fun

scary indian hat

I've been feeling guilty about how much less attention Jeremiah has been getting now that Jacob is home, so the day before Thanksgiving we made some little craft projects together. We made a little thankful tree, where Jeremiah told me all of the things he was thankful for, and I wrote them on the leaves. FYI, Jeremiah is thankful for excavators, rocks, leaves, snow, trucks, dinosaurs, elephants, fishies, etc. We also made this cute little indian headdress. He had tons of fun while we were gluing it together, but when I went to try it on him, he absolutely flipped out. Then I put it on hoping that he would see how fun it was, but he ran away screaming "scary indian hat." I did get some cute pictures of Jacob wearing it. (I'll post them as soon as I find the cord I need to download them from my camera, I hate moving)

We had a really good Thanksgiving this year. Steve and I decided we were tired of being away from home, plus it would be almost impossible to travel with Jacob, so my parents and Lori came to us this year. The food was great, Jeremiah loved all of the attention (except when we tried to get the indian hat on him again), and Jacob was held most of the day, so he was happy. Steve and I were loving having a holiday with everyone at home, and in our house. All in all, a very good day.

We're home

After 116 days in the hospital, we are all finally home. The first couple of days were really chaotic, but I think things are getting better now. Jacob didn't want to sleep at all the first few nights, but last night he only woke up every three hours. I just got back from a Dr appointment, and he is gaining weight. He has also been doing really well tolerating his feeds this week, so hopefully the Dr (a diferent one) will agree that we should decrease the TPN a little and increase his bottles. Jacob would love that, poor kid is starving. He drinks his bottle in literally 15 seconds, and he can't have any more for another three hours. I still haven't quite gotten the hang of moving him around. He has three pumps, one of which has to be plugged in pretty much all of the time. Most of the time everything is just on an IV pole, and a wheel it around with him. However, it's really hard when you have to leave the house. Home health gave us backpacks (yes, plural) to carry the pumps and IV bags in, but everything doesn't fit into one backpack. I barely fit through the door carrying Jacob in his carseat, 2 backpacks (which have to stay upright), and my purse. I think I'm just going to have to come up with my own bag because this is just ridiculous.
Despite the hiccups, it is really great to have the whole family living in the same place again. Jeremiah loves playing with Steve, and is trying to share all of his toys with Jacob. Still working on sharing gently, but luckily he hasn't hurt Jacob, and he is getting better at it.

confused

I'm not really sure how I feel. The Dr is planning to discharge Jacob on Wednesday, which I am really excited about. But, Jacob has gone backwards this last week, so he will be going home on TPN. I really thought we were going to make it home without the TPN. It is so frustrating, because right now he is about at the same point he was a month ago. It kind of feels like the last month was just a very expensive and emotionally draining waste of time. I'm also kind of nervous about having to take care of him by myself when he still has all of this stuff. It is going to be really busy. I really didn't want to bring the hospital home with us, but I guess it's better than staying in the hospital forever.

nevermind

Completely disregard everything I said in the last post. Instead of sending us home, they moved us to the infant unit so that the gastroenterologists could get to know Jacob, because they will take over when we go home. I absolutely despise the infant unit. The nurses have 3 patients and all of the babies are in private rooms, which means if I am not there he just lays in his crib all day. But not to worry, they check on him at least every two hours. Pretty sure if I only checked on him every two hours at home I would have child protective services on my doorstep. I made a big stink and now the therapist from the NICU is coming down to play with him every day she works, and she is sending all kinds of other people so at least he gets out of bed and is stimulated some of the time.
Not real happy with the Dr situation either. They completely changed his feeds when they moved us. Now he gets 30ml/hr through the feeding tube and his bottles were decreased to 10 mls every three hours, just enough to tick him off. They also added formula to the milk to give him more calories. Since they did this he has been pooping WAY too much, and has lost weight every day. They put him back on IV fluids last night. The Dr still thinks he is going to send us home tomorrow. (insert string of profanities here). I really want to go home, but not if we are going to have to turn around and come right back. I told him I didn't think it was a good idea to send him home while he was losing weight (duh) and he said there is only so much that can be done with Jacob bowel, and that if when we come back for our follow up appointment he still isn't gaining weight that he will send us home on TPN. Can I get a new Dr please?

huh?

Things have been going pretty good with Jacob lately. He was taken off TPN a few days ago and has been eating more and more. He is still getting continuous feeds, and he gets a bottle every 3 hours. He is almost up to full feeds, so I was thinking they would probably start talking about discharging us in a few weeks, but yesterday during rounds the Dr said he didn't see any reason why we needed to still be here, and I could transition him from continuous feedings to bottles at home. I was completely surprised, but I guess I can probably do everything they are doing at home. There are still a million things that need to get worked out before we go home (equipment, gastroenterology consult, feeding plan, etc), but it could happen soon.
I'm really excited to go home, but kind of scared too. Jeremiah and Jacob both take a lot of energy, how do you take care of two kids at once? I also have no idea how I'm going to keep Jeremiah from pulling out Jacob's feeding tube. Any ideas?

Jeremiah had a lot of fun trick or treating this year. He was kind of confused at first, but by the end of the night he was saying trick or treat, taking handfuls of candy, and asking for the next house.

I was so happy I was able to get pictures of both of my boys together. I thought they were pretty cute. This was the first time we had the whole family in the same room.