Two weeks.

This morning, Karl went to the hospital, while Kyra, Kyle, and I made some get well cards for Carters crib this morning. Kyle decked his out with cars... Kyra is working on her cutting skills and learning what "half", "quarters", etc are...here is her creation. She loves the name Hubert all of sudden. Silly girl!

This afternoon, we took the kiddos to the Tucson mall to let them wander around the Disney store. On the way there, they started pretending to be cats. I thought "Oh that's so cute when they play together and simply use their imagination". Then they started pretending that there were rats and baby birds running around the car...AND STARTED PRETENDING TO EAT THEM. How stinkin' gross is that! Well, then Kyle started to get upset because Kyra wasn't sharing her PRETEND dead rats with him. I'm wasn't sure if I should laugh or cry!

Then while we were at the mall, some teenage driver wasn't paying attention when she was backing out, and backed out into our van. THANK HEAVENS there was no damage!!

Tonight I got to visit this little guy..Although this little man make look very innocent..he is the proud owner of a new feeding tube, after pulling his out TWICE last night. They switched it to the other side to give his left cheek a break from the tape. While I was there (About an hour and a half) he didn't choke a single time, or need to be suctioned. So hopefully that is good sign!! I also did some research on the Ear Nose and Throat Specialist, who we are waiting to come in Monday and see us...it turns out he got his degree from BYU, has a white T-shirt under his collared shirts in all his pictures, and has 6 kids...any guesses??? It does sound like he is the best there is, and he is the only ENT pediatric specialist in town, so hopefully, he can start figuring things out for us. :)

Better day

Today I went to the hosptial and was SO RELIEVED to find that my VT was his nurse again! They were doing rounds when I got there. I don't think I've ever been in a teaching hosptial before, where residents report and say things like "The patient presented with difficulty swallowing.." I did feel like I was on a medical sitcom for a minute. After talking to the Becky, the nurse, she explained that UMC only recieved one of the two swallow studies, and that the general radiologist read the film, because the pediatric radiologist is out of town until Monday. So on Monday, hopefully the pediatric radiologist will take a look at it, and in the meantime we can get ahold of the first swallow study and the MRI results from St. Joesph's. (I think I would of been a lot less stressed if the resident had explained that a little better.) Of course when I look across the room and see the little baby that has already been there for 3 months, it puts everything into perspective. Carter was also put into a big boy crib, instead of one of the little plastic cribs. He even has a little view from his window. Here he is just chilling.

So we are waiting until Monday, and at that point hopefully everyone will come together and we will have a plan.

I came home around 12:30ish and put the kiddos down for a nap, while Karl headed up to the hosptial. Then once Kyra and Kyle woke up I took them to hospital to see baby brother! They were able to see him through the NICU window. They were so excited! The shift change doesn't happen until 8 PM, so Becky was still on when I brought the kids over. Kyra saw her through the window, then looked at me, and then looked at her, and then all of a sudden it dawned on her that Carters nurse was the music leader in Primary. She was pretty excited about that as well. Then we went out to eat with some friends and then headed to a U of A gymnastics meet. The kids were really well behaved, U of A won, and dinner was yummy. It was so nice to just take a break from everything, get out of the house, and have fun with some friends :)

SOOO FRUSTRATED!!

This morning Karl and I headed to St. Joe's for Carters second swallow study. The neonatologist had spoken with us the day before and said that he consulted with an ENT (ear, nose, throat specialist) at UMC, and that the doctor thought that Carter had a specific disease, and they would be able to look for it during the swallow study. They performed the study, and diagonised Carter with Cricopharyngeal achalsia. It is a very rare disease that causes difficulty in swallowing, food to come up the nasal passage, reflux, and the sphincter (muscle in the throat) to stay closed. It matches Carters symptoms exactly. The great news is that the treatment is a simple balloon dilation. They stick a tube down his throat , and slip it inside the muscle to force it to stay open, and it has a high success rate, and is minimally invasive. So the neonatologist said that we needed to be transfered to UMC, because the pediatric surgeon, and the ENT were both over at that hospital. So Carter was transferred by ambulance this morning. Here he is inside his transport unit. He was happy as a peach during the ride...they strapped him down so it was like a super swaddle. You can see his little head inside the unit.

UMC is....different from St. Joe's. We really loved St. Joseph's. It was like the old sitcom Cheers "Everybody know's your name." We had one neonatologist who saw him everyday, one occupational therapist, and we got know the majority of the nurses. Everybody knew who Carter was..what his problem was...they knew the sound that he makes when he is choking, they knew when he needed to have this throat suctioned, etc. One night we came in and Carter wasn't in his room. Of course I started to panic and asked the closest nurse where Carter Adams was. She swirled around in her chair, and I saw she was holding a baby and said "He's right here. He wanted to be held for the past 2 hours." When we left this morning the occupational therapist gave us her home phone number, and through tears said "Please keep us updated". It was just very personal. UMC is just differnet. They have the specialists, they have the special test equipment, they have the surgery capabilities. So it is where we need to be, I know that. And I'm sure after a couple weeks it will start to feel more comfortable. The nurses will start to know who he is, and his personality. But, the NICU its just one big room, with about a dozen other babies. Then there was a doctor, and a resident, and some other doctor, and a couple different kinds of nurses. So it was just all a little overwhelming. One of the great things was that his nurse today is my visiting teacher! So that was really nice, to know someone, and to feel instantly comfortable with that. I think if she hadn't been there, I would have lost it. So now the REALLY frustrating part of the story. While we were gone, one of the doctors ordered that he be fed by a bottle for the next two feedings. WHAT?!! We have sat in the NICU for two weeks. We have tried bottles. We have tried breastfeeding. He chokes. We have done two swallow studies, that shows that he chokes. Maybe I'm just paranoid, but the doctor at St. Josephs said the number one concern at this point is pnemonia, and that we need to avoid him aspirating on anything. So we went in tonight, and I asked the nurse why on earth they would give him a bottle, and she didn't really know, but added that it "SOO did not go well." Well, of course not! We asked what the ENT specialist said, and she didn't know either. So she went and found a resident to come talk to us. The resident said that they can't take anyone elses word on the fact that he chokes. They have to see it. They can't believe our word, or the neonatologist, or the occupation therapist, or the swallow studies. The have to risk pnemonia, just to see what happens. I didn't love that answer. Now the kicker, she said that the ENT specialist and the radiologist didn't agree with the diagnosis that St. Joe's gave us. But the ENT specialist is the one that told the neonatologist at St. Joesph's what the problem was! She went on to say that the radiologist didn't like the swallow study video, and they just like to do it a certain way, and that they would have to repeat the swallow study. And that they think its a problem with his NOSE. His nose??? We watched the swallow study video. The problem is not his nose. The food only comes out his nose, when it backs up in his throat because that muscle is closed. So she then spent the next 10 minutes, telling us how sucky St. Joe's was. She then informed us that both the ENT specialist, and the swallow study person were both gone until at least Monday. So we just sit for 3 more days, knowing nothing and doing nothing. And that we would "start over" on Monday. No, I don't want to start over. We have already been here for 2 weeks. Also, we found out that the person we talked to on the phone two days ago was wrong about siblings coming to visit. They are allowed to see him through a window, but that's it. So yet again Kyra is disappointed. I'm just overwhelmingly disappointed. All of the elation from this moring, of knowing the problem, and having a treatment plan, that included him coming home in the next couple weeks is gone. And I feel that not only are we starting over, but that we are going backwards. I know that we need to be at UMC. I know that they are the specialists. I know that they will take good care of Carter. I know eventually it will feel more personal to us. That we will feel like they really care about Carter, and that he isn't just a name, and this will just be a distant memory.....I just wish it would become a memory sooner, rather than later.

Day 10

Today was a hard day. I went to the hospital this morning and met with Dr. Meribani, the neonatologist. He explained the problem like this...The way we eat is that we put food in our mouth, and a signal from our brain tells our tongue to swallow. That reflex then signals another reflex further down, that pushes the food toward the stomach. Then at the end it triggers the muscle just above the stomach to open and allow food to enter. That is the muscle that we saw on the swallow test that isn't opening. But, it apparently isn't the muscle causing the problem. Carter doesn't have any swallow reflex. He has the suck reflex, but no swallow. But we did the MRI and there is no problem with the brain sending the signal to the back of the tongue, the tongue just isn't reacting to the signal. So the doctor said that because Carter's ability to swallow hasn't improved during the week, he thinks there is little or no chance of us seeing a change on the Swallow test. The really frustrating thing is that they have no idea why the muscles in the back of the tongue aren't responding to the signal. So now, we will still repeat the test on Thursday, and assuming that there is no change, then he will get transfered to UMC on Friday. Apparently UMC has a better pediatric area, more specialists, more access to testing equipment, and a more long term hospitalization capabilitiy. Dr. Merabani is assuming that the muscle just needs to be developed over a long period of time. So more than likely we will sit at UMC (while continually trying to figure out the reason for problem) for about a month or longer, until they put in a G-tube. At that point they can send us home, and wait for him to develop. Obviously, getting told that we are looking at a month or longer in the hosptial, and then coming home with a G-tube was not what I wanted to hear. I feel so truly frustrated with the fact that if the muscle just needs to be worked out (its not like we can put a little baby dumb bell in his mouth) then getting him to eat would work on that muscles. But we can't do that because he could aspirate on it. So what do we do??? I hate the answer "Just wait and see."
If there is one upside to being transferred to UMC is that siblings can visit!! That would seriously make a WORLD of difference to our family.

Anyway, all of this information just was a little too much today. My poor sister happened to call at the wrong time, and got an earful of crying and frustration. Thanks for listening. :)
There was some good news today...Carter weighed in tonight at 6 lbs 12 oz..which is fantastic, because up until now he was still losing weight.
So if you all will say a little prayer, that by some miracle we will see an improvement on the Swallow Study..any improvment would be sooo encourging.
Here is a picture of our little guy from tonight. He looks identical to Kyles baby pictures, except Carter has a dimple in his chin, and slightly more hair. Here he is sleeping peacefully duirng a feeding (thanks to his new medicine!!)

Day 8

Carter had an MRI done yesterday morning. The purpose of the MRI was to see if there was a brain damage, or any abnormalities that might be causing all of the problems. If the results came back normal, then we are looking at a problem that is fixable either with time, therapy or surgery. If they came back with some sort of problem, then the problem is a million times more complicated and not as fixable. He did fantastic for the entire test. He didn't have to be sedated at all, which was great. Of course I have to research the problem until I was blue in the face, and worried about one thing and another. So waiting for these test results have been the most nerve racking thing ever!!! I was doing okay, until last night, I accidently dropped a glass cup and it shattered on the floor. For some reason that was my breaking point. I had a good little melt down, and felt much better afterwards. Anyway, we got the results back this afternoon, and everything looks perfect. SUCH A HUGE RELIEF!!! Now we wait until Wed or Thursday to repeat the swallow study. If there is a difference, then we can assume that the majority of the problem is prematurity. If there is no difference we will be transfered to UMC and go from there.
He also gained an ounce last night, which is the most he has gained since being hosptialized. Also the peditrician put him on some reflux medication, and it seems to be helping. So good news all around for today!!

Swallow Test

We left the hospital last night feeling pretty discouraged because Carter had a really hard day with his tube feedings. He was uncomforatable, cranky, spit up some, and had really bad reflux. So we were really anxious this morning for the Swallow test. We were at the hosptial about 7:45 for the test. We packed him up and wheeled him down to radiology. It only took about 5 minutes to get downstairs, but for his field trip they placed a blanket over the top of his crib so that he is completely covered, simply because people are curious, and we want to avoid germs, etc. We got down into radiology, and lifted up his blanket and that little stinker had taken his one opportunity of not being looked at constantly to take out his feeding tube!! In the room was the occupational therapist, who's job it was to feed Carter his barium laced bottle. Then the specialist who kept her eyes on the video screen the entire time, to not only evaluate the problem, but could see the second he started to aspirate on the milk and take it into his lungs, and could stop the test. Then the radiology specialist, who happened to be our stake executive secretary, and knows Karl pretty well. Then the NICU nurse that came with us. I am so grateful that she was the nurse that was on duty today, because she just had a knack for knowing when to make a small joke, or when to give a hug and reassure me that everything was going to be okay.
So the test itself was really interesting. On the screen you could see the milk, as he began to drink it, and a dark stream going into his mouth. At first he did okay, the first couple of sucks went down fine, and then all of a sudden, you could see the liquid completely stop going down, and just swirling around in his throat. It continued to back up into his throat and mouth, not allowing anything to go down, until it backed up enough and went up his nose, or down his airway. So basically, there is a muscle at the bottom of the throat, that contracts down and opens to allow food to go into the stomach, but it just stays contracted. They are hoping at this point that it is a premature issue, and that the connection betweent the brain and that muscle just needs to mature a little. So they are going to tube feed for 1 week, no more feeding tests, and then repeat the test next Wed. or Thursday. They will be able to see if the muscle is doing a better job or not. If it is, that we can continue on the idea that it is a premature issue, and if it doesn't improve there there are other options at that point...medicine, surgery etc. So at the least we are there for at least a couple more weeks, and go from there.
They also decided to half the amount of milk at each feeding, and just feed him more frequently. They are also adding rice cereal to it, to make it thicker, and have it be heavier in his stomach, so its not as likely to come back up. He also isn't gaining any weight, because he is using SO much energy with the reflux problems, so they are adding a caloric supplement to his milk. Halving the amount of milk made a world of difference. We did half the amount of milk at his 8 AM feeding, and he didn't have ANY reflux and slept through the whole thing. So that was fantastic!!
Karls car has now broken down 5 times on the way to the hosptial or on the way there. We have replaced the battery, cleaned the connections, taken into the shop twice, and now has the 3rd alternator in. Of course the car hasn't given us so much as hiccup in the last 2 1/2 years, and chooses this week to break down! I think if it breaks down again I'm going to go to the repair shop and ask for a refund and just buy a horse!

Day 5

We are on day 5 of being in the NICU. There is some good news and not so good news.
Good News:
*Carter is barely yellow anymore! Just a little under his eyes, and around his mouth.
*Before yesterday, Carter would only wake up when they changed his diaper, and he was not a happy camper at all. Well yesterday afternoon he was wide awake and HAPPY for over an hour. This happened again this morning!!! He is finally getting some of his energy back!
*Karls car broke down on the way to the hosptial this morning (bad news) but was able to get it towed and the alternator replaced by around 1:30 this afternoon.
*Kyra went to preschool this morning (which she has been missing desperately) and loved every minute of it. Then Kyra and Kyle went to a friends house to play, and came back SOOO happy, since they really haven't been out of the house in a week. Their friends had put together little gift baskets for them, to help occupy them when the new baby came. They loved them!! Thanks Laura for taking them....sorry Kyle pooped :(

Not as good news:
*The pediatric swallow test specialist was sick today, so the swallow test is postponed until tomorrow moring. But I found out that the swallow test doesn't involve him lying naked on a hard table. The baby is completely swaddled, and put in a vertical crib, and then a camera revolves around him. I also found out that the woman doing the study is the best in the city, and that the one of the best "swallow/feeding" experts in the nation is located in Tucson, if need be.
*Carter had a really hard time with his feed through his tube this morning. Lots of gagging, holding of his breath, and some spit up, but no vomiting, so that's good.
*The pediatrician came in and talked to me and gave me a couple ideas of what could be going on....unfortunately none of them were "Oh he's fine, you can take him home tomorrow!" The occupational therapist (who is fantastic, and very involved) is really baffled by what is going on, because she has never seen a baby have the milk come out their nose, and have the gagging and aspirating on the milk all together.

Other randoms:
We ran to walmart after Carters 11 am feeding and got a little web camera, so that we can use the laptop at the hosptial, log on to messenger, and then Kyra and Kyle can see baby brother. They are really excited about that!

Kyra and Kyle were "swimming" in the bath tub this morning and Kyra said "Kyle lets play dophins. You are the daddy dolphin, and I'll be the mommy dolphin." Kyle then asked "Who will be the baby dolphin?" Kyra pondered this for a minute and then looked at me and said "Can you let Carter know that he needs to come home so he can be the baby dolphin."

Other than that..not whole lot of other news. Karl usually wakes up at 7 AM, and goes in for the 8 AM feeding, and stays until around noon. Then comes home, we put the kiddos down for a nap, and I head up around 3 PM and stay until about 6 PM. Then we put the kids to bed, and have been heading back up at around 7:30 PM and staying until midnight. But that last couple of days we have just been a little more tired, and have headed home around 9 PM. Kyle doesn't seem to be having too hard of a time with all of this, but Kyra obviously understands what going on a little bit more. Last night when we were heading out at 8 PM, we could tell that she was going to have a break down if we left again, so Karl just went into the hosptial, and I had an extended bedtime reading with her. She is in much better spirits today!

Thats the news for now. Thanks for all the offers of meals, rides, and babysitting. Its really appriciated!!!