my terrible, horrible, no good, very bad day

Today was not good. It started off okay, but the middle and end were just no good. It turns out I am a future hoarder. Getting good deals on stuff makes me feel good. I try to limit it to things we need, but still. So this morning I got 4 bottles of shampoo/conditioner, 2 toothbrushes, and 2 bags of M&M's (yes, I need them) for $2.10. Things kind of went down hill after that. I didn't go to the hospital this morning because Jeremiah had a Dr's appointment at Primary Children's at 1:50 to check on his foot (it is doing fine). We waited for an hour and forty five minutes before seeing the Dr. Try keeping an almost 2 year old happy in a waiting room for that long, not good. My mom was going to come with me to the hospital so that she could see Jacob during the appointment and then she could watch Jeremiah so I could see Jacob. Unfortunately she had a sore throat yesterday and we didn't want to risk having her around all of those immunocompromised kids just in case she is sick. There are volunteers in the playroom that can watch Jeremiah, but I can only be gone for 30-45 minutes. By the time I got up to the NICU, scrubbed like I was going into surgery, and got into Jacob's room I only had enough time to change his diaper and hold him for 10 minutes before it was time to go and get Jeremiah.
Jeremiah dropped his elephant (the elephant goes everywhere and is his security blanket) a few minutes into the drive home, so naturally he screamed the whole way. We were going to have taco salad for dinner and didn't have any tortilla chips so I thought I would try to be helpful and broil some corn tortillas to crisp them up and we could put them in the salad. I was checking them every few minutes and one minute they are nowhere near done and the next they are on fire inside of the oven. That's right, on fire. The fire went out pretty quickly, but there is an alarm on the stove that wouldn't shut off. We ended up having to unplug the stove. When we plugged it back in everything worked alright, so hopefully I didn't break it.
I went back to the hospital at 7:30 and Jacob is doing good. He is up to 6mls/hr on his feedings and seems to be tolerating it. When I got back to my parents house my mom told me that Jeremiah had thrown up right before she put him to bed. I am choosing to believe that he is not sick and that it was just a fluke thing. Kids throw up right? hopefully. I am not loving this day, so I am going to go eat some M&M's (like I said, I need them) and be done with today.

waiting

Well, we have added another Dr to the payroll. A gastroenterologist came and saw Jacob on Monday. He thinks Jacob will tolerate feedings better if he is fed continuously rather than getting a bottle every 3 hrs. He is getting 4mls an hour and they are planning on increasing his feedings by 1 ml/hr every day. At his current weight the goal would be to get him up to about 27 mls/hr. Of course, that number will go up as he gains weight. Anyway, we have a long way to go, but we are making progress. Hopefully there won't be as many setbacks with the continuous feeds.
He seems to be doing good so far. He has made it through four days of feedings. He has never made it more than four days before, so that's kind of a big deal.

yo-yo dieting

Jacob is having food issues. The Dr stopped and restarted feeds twice this week because Jacob just doesn't tolerate food very well. He refuses to eat more than 6 mls of milk in a sitting, so they put in a feeding tube, again. Luckily this tube is small enough that they can put it in his nose instead of his mouth, so it doesn't bug him as much. He acts like he is starving when he has his binky, but the second you put a bottle in his mouth he stops sucking and says "what do you expect me to do with this" with his eyes. With me for a mother, he should love food. Maybe if it was chocolate milk he would do better. Chocolate makes everything better.

Running away

 I decided it would be good for my marriage and my sanity if I ran away this week. I went up to Preston on Tuesday night and came back Thursday afternoon. Steve moved all of our stuff into the new house a few weeks ago, but didn't unpack anything because he wanted me to be able to put things where I wanted them, so this is what it looked like when I got there.

Steve and I spent most of the day unpacking Wednesday and got the house to this point.

Unfortunately, that is as good as it's going to get for a few more weeks. 

I stopped by the hospital on my way back today, and Jacob looked really good. They started feeding him again today, and so far so good. He still has his cold, so he will be in isolation for at least another week, but he looks like he feels better. 

I met the bishop of our new ward in Preston today, and I am so impressed. Steve comes down to Sandy every weekend, so we have never even been to the new ward, but the bishop has known about our situation. Anyway, he and his wife drove all the way down to Salt Lake today so that they could meet me and see the baby. Round trip that's a 5 hour drive. I thought that was above and beyond especially since they didn't have any other reason to be in Salt Lake. It's nice to know people care. 

Say what?

Things have been very confusing with Jacob the last few days. Everyone thought he was septic again, but all of the cultures have been negative except for the urine. However, so little bacteria grew that the Dr thinks the sample may have been contaminated when they put the catheter in. They put him on antibiotics just to be safe and then he had hives all over his body. He has reacted to one of the antibiotics before, so they were giving him benadryl before the antibiotics and it helped, but then the hives would come back 2 hours later. They tried stopping each of the antibiotics, and it didn't make a difference so they just restarted all of them and hoped for the best. Then last night the hives went away and haven't come back (no one knows why). He looks tons better, but his digestive system still isn't cooperating. He is having a lot of diarrhea, but they are still sucking a lot of bile out of his stomach. You would think if his intestines are moving well enough to have diarrhea, bile wouldn't be backing up into his stomach. I don't know, maybe it would make more sense if my brain wasn't so smooshy. I swear being in the NICU this long makes you dumber.

who wants food anyway

Apparently Jacob decided food is overrated. Last night he refused to eat all of the milk he was supposed to have, a whole 18 mls, so they put a feeding tube in. Then this morning he was having diarrhea, so they cut his feeds in half. This afternoon he started throwing up, so they did an xray of his belly which showed distended loops of bowel. Unfortunately, they aren't sure how different that is from his normal because his small intestine is normally 3 times the diameter it should be. They also did some blood work, and it looks like he may have another infection. They also did more blood cultures and a lumbar puncture (spinal tap), but I don't know the results of those yet. They put him back on antibiotics again. They aren't going to feed him anymore for a while, and put in a tube to suck out his stomach contents so that his bowels can rest.
Steve and I knew there would be setbacks, but this still really sucks. I was kind of hoping he would be the miracle baby that just got all better in record time. That's not quite working out for me.

isolation

Jacob has a cold, and was put in isolation on Monday. Actually, there is one other baby in the room because she also has a cold. I hate isolation. There are about 150 nurses that work in the NICU so I don't know a lot of them, and you are trapped in a room with one of them. It is really awkward if they aren't talkative and just sit and stare at you. It seems like the cold is getting better, but Jacob will have to be in isolation at least until Monday.
Other than that things appear to be going well. He has been tolerating feeds and they are slowly giving him more. He is up to 14 mls every 3 hrs now. He acts like he is hungry, which is sad, but a good sign. They will probably take him off of the morphine today, and he finished up his course of antibiotics yesterday so that should eliminate a few tubes. I counted the other day and he had 14 tubes/wires attached to him. Now I think that he is down to about 9, progress.

poop

Jacob pooped yesterday! Oh know it shouldn't be that exciting, but it is. It means they are going to take out the tube that has been sucking out his stomach contents, and may start feeding him tomorrow or the next day. He will probably only get fed ridiculously small amounts at first, but still it is something.

The poor little guy has been really congested the last few days. They are running some labs to make sure it isn't anything scary like RSV, and so far everything has come back negative so it is probably just an everyday cold. Unfortunately, he is still on the oxygen. He is only on a half a liter which is practically nothing, but they don't want to wean him anymore while he is so congested. Hopefully it will clear up quickly.

Steve came back down to Sandy yesterday. He spends the week in Preston and comes down to see us on weekends. It is so nice to have him back. Steve and Jeremiah have a lot of fun playing together. Jeremiah is going to be Eeyore for Halloween and I just finished making his costume, so I put him in it so Steve could see. Jeremiah got really excited, so they were both running around the house playing like wild men. It was pretty cute.

Hurry up and wait

Not a whole lot is changing right now. Jacob's staples were removed this morning, and they are still weaning the oxygen. I'm hoping Jacob will be off of the oxygen by tomorrow. Other than that, we are just waiting for Jacob's intestines to start working so that we can start feeding him.

my baby's back

Jacob is off of the ventilator! He was extubated yesterday, and is doing really well. He is on a lot of oxygen, but they are slowly weaning it. Steve and I got to hold him again last night. It has been 12 days since we held him, so it was great. He was smiling at us and making cute baby sounds. He is still pretty puffy, but he is acting like my baby again.

Jacob right before they extubated. He had been pulling at all of the tubes so they put sock on his hands, then he started hitting them. He really wants them out.

So nice to be held.

sepsis

So when I said that Jacob's line infection was not big deal, it turns out that was a lie. When they drew the original blood cultures they drew blood out of his central line, his arterial line, and a peripheral site. There was bacteria in the central line and arterial line, but not the peripheral site which implied that the infection was only in the lines and not throughout his whole body. They have since drawn another 2 sets of blood cultures and last night one of them came back positive from every place the blood was drawn. That means the infection is everywhere and he is officially septic. The bacteria is sensitive to the antibiotics he has been on, but the levels of antibiotic in his blood were a little too low to be completely effective. They have adjusted the dose of the antibiotics, so hopefully we can clear up the infection quickly.

Jacob has been a lot more awake the last few days, and the swelling seems to be going down. He still has a long way to go though. Before he had surgery he weighed 7lbs 5 oz. He was weighed last night and he was 10 lbs 13 oz. That is a lot of extra fluid! Poor little guy looks kind of like the stay puffed marshmallow man.

On a positive note, Jacob may be able to come off the ventilator soon. They have been decreasing his ventilator settings and he has been tolerating it really well. I'm hoping he can get off of it in the next day or two. I really, really want to be able to hold him again.

Yesterday we took Jeremiah to the zoo for some normal happy family time. Jeremiah loves animals, he has a little toy elephant that goes everywhere with him.

His favorite part was the carousel because he could see a lot of animals all at once, he doesn't care that they aren't real.

line infection

Jacob had a fever yesterday morning so they drew some blood cultures. The cultures were positive in his central line and his arterial line. What that means is that there were bacteria in those lines. Ironically, the arterial line was removed last night because it was bleeding, and we have been waiting since yesterday afternoon to have the central line removed because it was ballooning and looked like the tube had an aneurism. He has been on antibiotics for the last 3 weeks, so he should be fine. They drew more blood cultures from the new lines today and hopefully they will be negative.

The Dr wants to let him wake up and move a little more to help get rid of the edema (swelling). That makes me a little nervous, because I really don't want him to hurt. On the other hand, if the edema decreases he won't hurt as much. Also, he will be able to get off of the ventilator faster if he isn't sedated.

Baby Jacob

After some nagging from my brother Steve and his wife Steph I have decided to enter the world of blogging (gasp). This is a big step for me, because I pretty much despise technology. I also have very few computer skills, so this will never be cute like everyone else's blogs seem to be, but I guess if you want to know what is going on with us you will just have to suffer through my ugly blog. I'm sorry.


As most of you know Steve and I recently had a new addition to the family. Jacob was born July 18th at the University of Utah hospital. He was immediately taken to Primary Children's Hospital and that has been his home for the past 6 weeks. I guess I'll give a recap of the last 6 weeks, and I promise future posts will be shorter.


Jacob had emergency surgery a few hours after he was born to restore blood flow to the bowel that was on the outside of his body and was twisted. There were also two perforations that were repaired. The surgeons didn't remove any bowel during this surgery, but he was only born with about half the intestines he should have, something called vanishing midgut. Somewhere during his development a section of intestine had died and reabsorbed, so the large and small intestines weren't connected. 

before surgery

after surgery

The surgeon was planning to do another surgery when Jacob was 5 days old because she thought some of the intestine would die, making him very sick and she would need to go in and remove it. He was doing so well though, that she ended up not doing the surgery then. 

He came off the ventilator after 11 days and we were finally able to hold him. 

He slowly improved and got his first taste of food when he was 17 days old. He could only have 2 ml (about 6 drops) every 2 hours, but even that small amount didn't agree with him. It turned out he had a stricture (narrowed spot) in his intestine so when they fed him the formula couldn't get through that spot, the bacteria normally in the bowel became overgrown and ended up in his bloodstream making him very sick. He hasn't had any food since that happened.

Jacob had his second surgery on Aug 24. 

He went from this

to this

The surgery turned out to be very complicated. It took the surgeon 2 hours to cut through all of the scar tissue so that she could get his intestines out and see what was going on. Unfortunately, some the intestine that was originally outside his body and had died and needed to be removed. All of his intestines were reconnected, yeah no more ostomy! There was a lot of swelling so they couldn't close him. He went back to surgery on Aug 30th and they were able to close him. He is still on the ventilator because everything is still very swollen which puts a lot of pressure on his lungs. His biggest problem right now is pain control. He has been on narcotics for so long that he is very tolerant. He is getting huge doses, but they aren't working very well. The Dr increased the dose of morphine again last night and he did seem more comfortable when I so him this morning so, hopefully he is feeling a little better. Babies just aren't supposed to hurt.