firsts

There have been quite a few firsts this week. Jeremiah and I spent a little time in Preston this week. It was the first time he has seen the house since it is finished, and the first time sleeping in his new room. He didn't really care about the house, but he was excited to see all of his toys again. Jeremiah got his vaccines yesterday, and he is old enough now that I am going to take him to see Jacob for the first time tomorrow.

Jacob had his first real bath a few days ago. PICC and central lines can't get wet, and he has always had one either in his arm or his chest, but now it is in his hand so we put a glove over his hand and the nurse held his arm up in the air the whole time. They don't have real bath tubs at the hospital, just those little pink basins, so he didn't fit very well, but still. Parts of him were submersed in water so I'm counting it. He wasn't real thrilled with the experience, but hopefully he will enjoy it eventually. He is 101 days old today, not really a first, but still kind of a big deal. He has gotten really big. He is 11 lbs now, and is 23 1/2 inches long. He has had kind of a rough couple of days. He has been really grumpy (inconsolable, non-stop screaming, etc.) the last few days. The theory is that his stomach hurts because of the increase in feedings. The plan is to move up on the feedings even more slowly than we were doing, and hopefully his intestines will do better with the extra time to adjust.

better

This week started out really badly, but thank goodness it is getting better. Jacob was having a lot of trouble tolerating his food over the weekend. I thought he had gotten as far as he was going to get, but the Dr stopped one of his medications, and he has done great the last two days, and is up to 23mls/hr on his feedings. He also gets to take a bottle 4 times a day now (they just turn off the continuous feed for an hour, and give him what he would get in that hour in a bottle).

On Monday, a nurse made a potentially dangerous mistake which got me very upset, but luckily Jacob is fine. I talked to the charge nurse about it and she promised me Jacob would never have that nurse again, so I am feeling better.

Jacob is finally out of isolation. After 5 weeks in solitary confinement, I am loving seeing people again. Isolation is exactly how it sounds, very, very isolating. Jacob is loving it too. He's not content to just lay in his crib and sleep all day. He is bored, so I think he is enjoying having more to look at in the new room.

Jacob rolled over a couple of days ago! Of course I missed it, but see how close he is in the picture, he started out on his back and got this far by himself.

I love this picture. Jeremiah was pretending he was an elephant, and the cups are his tusks.

cupboards, closets, and isolation rooms

I know it isn't kosher to talk openly about poop, but oh well, poop is a huge focus in my life right now. Right now really the only thing Jacob is working on is eating (and getting over that stupid cold). The problem isn't that he doesn't want to eat (he acts like he is starving) the problem is tolerating the food. When he doesn't tolerate it means that he is vomiting or having diarrhea. That doesn't sound like a huge deal, but it would mean he's not absorbing anything, getting dehydrated, and it throw off his electrolytes which can be dangerous. In the hospital nurses and Dr's like to have measurements on everything, and that includes stool output. He has been having 9g/kg/day which is fine (20g/kg/day is where they get nervous and 30g/kg/day they stop feeding him). On Tuesday he had 25g/kg/day, so they didn't increase his feeds and just watched him to see how he would do. Wednesday he was at 18g/kg/day so they went up to 19mls/hr on his milk. Then yesterday he only had 8g/kg/day of stool (which I think might be a mistake, the nurse was really new and may have measured wrong). I'm hoping that Tuesday and Wednesday were just a fluke and that he will keep tolerating his food.
In other news, we were moved into a new isolation room yesterday. Remember Harry Potters cupboard under the stairs, it's kind of like that. It is very small and kind of dark. I honestly think it was a closet at one point. I was a little upset that they had moved us, and the nurse said "at least it's more private." I have been sitting by myself in a little room everyday for the last month. Why would privacy be a good selling point?

lines

I hate lines. A line is medical slang for an IV that is threaded through a vein until the end of the tube is in the vein right above the heart. They have different names depending on where they are inserted and the kind of tube. Anyway, Jacob has had more problems with his lines than I've ever seen before. I have never seen a line break before, granted the tubing is a lot smaller for a baby, but still it is rare. Jacob had his third line break this week. The first one the tubing just snapped, the second time the tubing basically had an aneurism and the walls of the tube started ballooning, and this last time the tubing got a hole in it and was leaking IV fluid everywhere. After this last break they had a really hard time getting a new one in, and ended up putting it in his hand. It is very important that these have a secure dressing on them because the dressing is the only thing keeping them in place, and there is a huge risk of infection if the dressing is compromised. How are you supposed to keep a dressing on a tiny baby hand? Not real excited about it.
They do an x-ray right after they put the line in to make sure it is in the right spot, which it was. Then they do another x-ray 12 hours later because the plastic softens with the body heat and can move a little. On this x-ray it was in too far, so they measured how much it needed to be pulled back, pulled it out a little, and did another x-ray. This time it wasn't in far enough. Unfortunately once you have pulled it back, you can't push it in any farther because you could cause an infection.
One of the reasons Jacob needs a line rather than a normal IV is because the TPN (his IV nutrition) is very hard on blood vessels so it has to be put in a huge vessel where the blood will quickly dilute it. Now that the line is not in the right place, and they don't wan to put a new one in, his TPN has to be less concentrated which means less calories. At this point he is only eating 18mls an hour which is a little over half of what he needs, so he will be on TPN for at least another 15 days. I am more than a little irritated, but the dietician has done all of her calculations and says Jacob will still be getting enough calories with the less concentrated TPN. Hopefully he keeps growing. He gets weighed every day, so I guess we will know pretty soon if it isn't enough.
Sorry for the rant. I'm just frustrated. It's really time to go home.

The last few days have been kind of crazy. I came back down to Salt Lake on Thursday morning and stopped by the hospital on the way. The nurse called the physical therapist to come talk to me as soon as I got there. Apparently Jacob only wants to look to the right (we always used to hold him so that he had to look right to see us because all of the tubes/wires wouldn't reach any other way) so he is getting a flat spot on the right side of his head. They are also worried that the muscles on one side of his neck will shorten, so physical therapy is working with him now. I got to play with him on a little mat on the ground (first time) and they showed me some things to do with him that would help.

Thursday afternoon Jeremiah and I went to the zoo with my sister-in-law and her kids. Jeremiah loves animals, so he had a lot of fun. He practically has the zoo memorized. He knew where all of the animals would be, and told us which ones he wanted to see.

We had a bunch of family over yesterday to celebrate Jeremiah's second birthday. He got tons of toys, way more than we have room for, and had a lot of fun.

Jeremiah loved his birthday cake (an excavator and dump truck) and ran around saying "happy birthday cake" all day. He didn't want to pick it up and eat it though. He just stuck his face down to the cake and took little bites. 

Slow and steady

Jacob is up to 11mls/hr on his feeds now. That is about 1/3 of what he needs, so we are definitely making progress. We should be getting lab results tomorrow which I am really hoping will say that Jacob doesn't have his cold anymore. It would be really great to get out of isolation this week.

Steve is coming down tomorrow and I am going back to Preston with him and then I will drive back in my car on Thursday. I am really excited to have my car back. I have been depending on my parents to get around for the last 80 days, so I am really excited about not having to ask for the keys anymore. Plus, it's a good excuse to spend some time with Steve.