All of Jacob's great progress kind of screeched to a halt this week. He has had a cough for about a week, but no big deal, just a cold right? Sunday night the cough become a really powerful barking cough, and he was really fussy. He wouldn't sleep, and he stopped eating. Monday morning I was going to take him to the doctor, but they weren't open because of Christmas, so I ended up taking him to the ER. They said it was just a respiratory virus, and that I should just put what he would take in the bottles down his feeding tube. Sunday night he started vomiting, so I had to completely stop his feeds. He breathing was labored, and the right side of his neck was also a little swollen so I took him back to the ER. Because of Jacob's history the Dr called down to Primary Children's and they decided to send him down by ambulance. I ran home and got Jeremiah (it was about 2am) and we followed the ambulance down. By the time we got to Primary Children's Jacob's neck was so swollen that he was almost unrecognizable. Long story short, they did an ultrasound of his neck and he has a blood clot where his PICC (long term IV) ends. It was causing blood to back up and fluid to collect in his neck and face. They have removed the PICC and the swelling has gotten a lot better. Unfortunately, they had to put Jacob on blood thinners so that the clot doesn't get bigger, and his body can break it down slowly.
It turns out Jacob's respiratory virus is RSV or another virus that does the same thing. He is pretty miserable. He has been having pretty high fevers and still won't eat. We were able to restart the continuous feeds without any vomiting though, thank goodness.
I'm not really sure how long he will be in the hospital this time. The Dr's really don't want to put in another PICC because he has had so many problems with them, so they are trying to increase his feeds enough that he won't need TPN anymore. Increasing his feeds quickly has never worked before, but he has done alright with it the last two days, so maybe it will work. Hopefully it won't take too long. I'm really not excited about being here again, and would love to go home.

Why does he look so pleased with himself? Because he just pooped through the third outfit of the day.

catch up

Wow, I haven't written anything in a while.
We blessed Jacob on the 12th. I'm not supposed to take him out of the house except for Dr appointments until the end of flu and RSV season, so we did it at home. The house was packed with the all of the family that came, but it was a really good day. I was more than a little stressed, so I didn't get any pictures. Luckily other people did, so I will post some after I steal my mom's camera. Jacob did end up getting sick, but I think it's just a cold and it doesn't seem to be bothering him too much. Jacob has been growing like crazy. I made his blessing outfit 2 weeks before, thinking how much could he grow right? It turns out, a lot. His little suit did fit, but it was tight.
We are still working on getting Jacob off of the TPN. The Dr is only decreasing it once every two weeks, so at this rate he will be off in another 4 months. Not gonna lie, more than a little bugged by that. I shouldn't complain though, he is doing really well.
Jeremiah has always been fearless, but for some reason he is afraid of everything all of the sudden. He is convinced that there is a monster under his bed who is going to eat him. I have no idea where he got that idea. As far as I know, the only monsters he has ever seen were on Sesame Street. Santa stopped by our house last night. I thought Jeremiah would love it, but he was terrified. He was screaming, and then as soon as Santa left he gets all excited and says "that was Santa." Weird

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. 

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.

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.