Sunday, October 3, 2010

The August Babies

Caleb had another good day. There were no major meltdowns and he gained 30 to 40 grams again. They increased his methadone to the level it was before the meltdowns became more frequent. So far, it seems to be working.

His heart catheterization will not be done until Tuesday or Wednesday. Last night, Caleb had a meltdown that last about 2 1/2 hours. They gave him some morphine and he calmed down quickly. When they took his vitals, he had a temperature of around 101. The thinking is that he may have been hot from his marathon fit. They ran tests on his blood and urine and everything looked good this morning. Waiting is not a major disappointment, it doesn't look like we will be going anywhere antyime soon.

Saturday, October 2, 2010

First Family Picture

Today was a milestone day. Today we took our first family picture. Yesterday was the first time since Caleb has been born that our entire family was in the same room. As you can see, the excitement of the moment was not lost on Caleb!

This is what Caleb looks like when they try to wean his methadone dose. We believe that we officially have an issue. Both Phil and I asked the nurse practioner if this meant that he was addicted to methadone. She very quickly corrected "addicted" to "dependent". Addicted has a choice component, dependent is purely physiological. Addicted is difficult to fix, dependent just takes time and expertise. Luckily, we have both! What they will probably do is switch him to a different drug to calm him, thus soothing his body, but eliminating the methadone. They will probably wait a little while because the methadone is not hurting him and other than the occasional inconsolable meltdown that should be eliminated by putting him back at his happy dose, he is getting very close to his happy place.

Today, he gained 40 ounces. Another great day! The kids all got to hold him. It is really funny how much they enjoy it. The nurse we had last night was so impressed - she works nights and doesn't usually get to see siblings visit. She said "This is better than any drug we could give him". I doubt Caleb would agree right now, but he does seem to like looking at the Big Three when they hold him.

Friday, October 1, 2010

Caleb had a good night last night. He was fussy at 1:00 am and got a dose of morphine (he loves the hard drugs) and was good the rest of the night. He dealt very well with the wean from 4 liters to 3 liters of air. Today, they weaned his methadone a little. He is on a very small dose, but he still seems to need it.

Today, we officially declared that he gained weight. His diuretics are good and solid and he was 30 grams heavier today. In case you were wondering, 30 grams is the weight of about 10 pennies. Another gain like this and he will be back to his birth weight. Talk about slow progress! We will take progress in whatever form it comes.

It was decided not to wean the diuretic dose. His outputs are good and he is looking very good. When he retains too much fluid, he looks puffy and when he gets rid of too much, he looks like a raisin.

For now, we are going to hold steady on everything until the heart catheterization (hopefully on Monday, but we haven't heard for sure). So, we will hope for a couple more days of weight gains in the 30 to 50 gram range.

Thursday, September 30, 2010

Today was another good day. When I got to the hospital this morning, Caleb's heart rate was 115. I had to ask the nurse if this was ok, this was the lowest I had ever seen it. They said that it was very good. We are moving closer to the "happy place".

We are still working on the night/day switch. I wake him up a few times a day to remind him he is not nocturnal. We hung out for quite a while and he was alert and not crabby.

They weaned his air from 4 liters to 3 liters. They were going to eliminate one dose of diuretic, but decided against it because no one likes to make more than one change to him a day.

We are tentatively planning on a heart catheterization on Monday. They are hoping that this can also serve as the heart catheterization he will require before his second surgery. Every hypoplastic baby needs a heart catheterization before the second surgery. Luckily, he had dinked around long enough that we are close enough to the next surgery to make it work. If everything looks good, that means one less major procedure. We will keep our fingers crossed.

Wednesday, September 29, 2010

Long and skinny with a chest full of scars

Today was a good day. Caleb's x-rays looked good this morning and everyone believes his intestines are fine. They will probably not x-ray them again unless something else shows up.

The nurse was going to give Caleb his bath this morning and asked if I wanted to help. Of course I was not going to pass up the opportunity to see my perfect little boy naked (you never really get to see the entire baby here, just pieces and parts) and do a regular mom job.

Before his bath, his NG tube was removed to give his nose a break. The tube was no longer needed because they didn't need to remove all the contents of his stomach. This was a good thing because the tape holding the tube on his face was irritating his skin. Tape irritation seems to be a common thing with Caleb.

I got to remove the leads on his chest and his oxygen saturation sensor, so when he had his bath, he only had his nasal cannula and the IV lines in his legs. After his bath, I got to hold a clean, fresh smelling little boy with only a few lines. It was absolutely wonderful!

After all the excitement of his bath, Caleb and I snuggled and he fell asleep. It seems that Caleb has his days and nights kind of mixed up. He is very fussy for the nurses at night, but is pretty calm (usually asleep) for me during the days. Today I made an effort to keep him awake so we can see if he is just spoiled by his mom or if something is wrong at night. This afternoon, he was awake, calm and alert for about two hours straight. We talked and hung out. Hopefully, we got him tired enough to sleep tonight, but not so tired that he had to work too hard. Like everything else with Caleb, sleeping and being awake is a balancing act.

Being in Moderate Care is an eye-opening experience. In the PCTU, nearly all of the kids had a heart defect where surgery was necessary, but would provide a decent quality of life after recovery. In Moderate Care, you see a lot of kids with serious defects that surgery cannot fix. I have met parents that had to decide if open heart surgery would improve the quality of life for a child that was not expected to live into her teens. We are in the fortunate position that if the surgeries go well, Caleb can live a good quality life. The obstacles that we are facing are much easier than what other people here are dealing with. While we still have a way to go, we are counting our blessings and very thankful for our wonderful family!

Tuesday, September 28, 2010

Sleeping Peacefully

Today, Caleb turned six weeks old. He spent nearly the whole day sleeping peacefully. He was much less fussy and crabby today. The nurses and nurse practioners think that he has probably been uncomfortable due to the intestinal issues.

Everyone seems to think that the intestinal problem was caught in time and no harm was done. That is great news. They think that perhaps his intestines were not getting adequate oxygen as a result of the large amount of blood going through the shunt.

There is not a lot of optimism for Caleb coming home before his second surgery. Right now, the plan is to rest and grow. He will stay on the high flow air, IV blood pressure medicine and maybe the IV diuretics. The nurse practioner thinks that with this support, we can keep him in his "happy place". In his "happy place", the high flow air forces some of the extra blood from his big shunt out of his lungs and makes it easier for him to breathe. When it is easier for him to breathe, his heart does not have to work so hard. When his body does not have to fight so hard just to breathe and pump his blood, the calories that he was previously using just to survive can now be used to grow.

Luckily, the TPN and lipids (the nutrition he is receiving until next week) are sufficient to allow growth. So although he is not on breast milk right now, he can hopefully start growing and we are not wasting this week waiting.

For now, Caleb and I (or Phil) hang out when he is awake. We talk, sing, read stories and watch Jeopardy. We are trying to give him the stimulation that he would have if he were a healthy baby. We are also trying to enjoy his baby time so we don't miss out. If we have to do this in Ann Arbor for a while longer, we will do it. Hopefully, in a couple of months, we have have a "healthy" baby at home, thriving with the love of his family and going cross-eyed from a brother and two sisters in his face all of the time. Thoughts of his first months will be a reminder of how lucky we are to have him!

Monday, September 27, 2010

Today was a bad day. There were no critical backslides, just a whole lot of medium backslides.

We called the hospital this morning and found out that Caleb had been crabby through the night, but there were no changes made. When I got to the hospital, I found out that his diuretics had to be switched back to IV. They were hoping that would solve some of the crabbiness and get the right amount of fluid away from his lungs.

Yesterday, they thought there might have been some blood in Caleb's diaper. This morning, they did an abdominal x-ray with his chest x-ray. His lungs looked better and there was no glaring problems with the abdominal x-ray.

I talked to the nurse practioner and after consultation with the cardiologists and surgeon, it was decided to do another heart catheterization to see if they can determine if the shunt really is too big. The doctors can determine the pressures leaving the heart, both out to the body and out to the lungs. This would give them much more information than we have now. While it is scary to intubate him again, at least we would hopefully get some answers.

I asked the nurse practioner why Caleb has not gained any weight. The reason is that they are pulling off as much fluid as he is consuming. If they let the fluid stay, it goes around his lungs and causes problems. Part of the reason for the heart catheterization is that for now, we are stuck. He has to grow to have the next surgery and get rid of the shunt. He can't grow because we think the shunt may be flooding his lungs with blood.

I changed a diaper this afternoon and it had more blood in it. To protect his bowels, they removed all of his feedings and switched him to the TPN. TPN is the nutrition that goes directly to his blood. They put in an NG tube to remove all of the contents of his stomach. By doing these things, his bowels are no longer required to digest anything. All blood going to his bowels can now be used to keep them healthy. They also put him on antibiotics in case they was any damage to the bowels that may cause infection. The pediatric surgery people will be keeping an eye on him to make sure there are no problems. As of right now, they think he will be off of regular feedings for a week to 10 days. When they resume his feedings, they will start very slow (3 mL per hour versus his previous 20 mL per hour) and monitor him to make sure there are no problems.

Because of the concern about his bowels, Caleb will probably not be able to have his heart catheterization until next week. So for now, we are just waiting things out. On the bright side, nothing that has happened has caused any damage to his body. These things are just taking time, but not hurting him. If we are going to be here until his next surgery, this week is just one part of our waiting game and is not extending our stay. There is also the chance that with the heart catheterization, we may be able to find out what the problem is. If we find something that can be fixed, it may allow us to get home before the second surgery. That is something that we are definitely hoping for!