First Post-Op Appointment

Today was our first visit back at Northwest Children's Heart Care. Judah is doing well in so many ways :) He has gained 6.5 oz. since leaving the hospital last Thursday! He received a lot of praise from the staff and Dr. Park for packing on over an ounce a day since they last saw him. His labs looked great and his incision and drain tube holes are healing very well. Also, his chest x-ray looked great! Because he is eating so well and his x-ray showed no problems we are able to take away one of his two daily doses of lasix.

We do have a couple of things to continue to pray for though...First, his INR (level of anti-clotting medication) was too low so we have to increase the amount of coumadin he takes every night. It's scary to give him medication that can make him prone to bleeding and I was hoping to back off of it or at least be able to stay at the level we were at. His "blood clot" appears mostly unchanged. The doctors and echo techs are still scratching their heads trying to figure out where it really is. A new theory is that it is both inside and outside. Regardless, we still have to treat it like a clot, hence the coumadin. Second, Judah's valves (pulmonary and aortic) are not exactly perfect. The neopulmonary valve has a teeny tiny leak (not a big deal) and the neoaortic valve has a mild leak. We will watch these as he grows to see if they develop into anything that needs help, but for now we just wait and see. And of course there's the good ol' coronary arteries. There isn't any new information about them, other than because of the way they needed to be repaired we will need to treat any faintness or chest pain during exertion as an emergency as he gets older. For now, the doctors have told us that babies and toddlers do a really great job of pacing themselves and they will stop when something is too difficult for their heart.

Our next appointment is in two weeks. He also sees his pediatrician this week and a hemotologist next week. We'll post any updates about how things look after them.

We are so thankful for these past few days at home. Nehemiah had a lot of fun with his grandparents and aunties while we were gone, but I really missed him and I'm so glad to be home with him.

O.k...I jus woke up even though I'm supposed to be writing this and going to sleep :) I meant to write more tonight but I'll let the picture do the talking. Thank you so much for all of the prayers and words of encouragement.

Kirsten

Home, a belated post

This entry was written yesterday but we were too tired to post it....

So the routine lately has been me staying home in the morning and getting nehemiah up. Usually passing him off to his grandpa and then I sleep a little more. Later I wake up and then hang out with him. Well things didn't really go according to plan today.

Right when I went back to sleep, Kirsten text me saying our surgeon said he could go home. It was good the hear but he was not the one who makes the decision. 30 second later I get another text that the pediatric cardiologist, the one who does make the decision, said he could go home also. This was a bit unexpected so the house flew into motion to prepare.

By the the time I got the hospital they had taken everything off. No more nasal canula, he had gone 3 hours keeping his oxygenation level high enough, no more IV, no more stomach IV, and no more sensors to track his heart rate, respiration and oxygenation. This is the first time since he has been born that he has not been hooked up to these sensors. It was also the first time we had seen him without some sort of breathing apparatus on his face. When I walked through the door Kirsten was holding him walking around the floor we were on. He had never been more that 2 feet from his bed.

Unlike when we went home with Nehemiah getting out of the hospital was quite fast. We were home by 12 which was right before Nehemiah's nap. So Nehemiah got to me baby brother for the first time. He was quite curious and want to watch him. He touched him a little bit. He also likes to tell us what he's doing. Baby Brother's crying. Baby Brother diaper. Baby Brother poopy. He would be a great play by play announcer.

It has been quite surreal being home with him. His whole existence he has been in the hospital. Now he's home and we're doing normal new baby stuff which is so different that what we have experienced so far. Also for the first time the whole family was able to sit together. Usually somebody is at the hospital or having to do something else for Judah. It no longer felt like we were torn between being in two different places.

So it seems like we're a whole family which we wondered if that would every come. It felt like at the hospital for a months not weeks. We have more appointments over the next weeks to check up on things and we have medication to give but that should only last a few months. They still don't know where the clot is so people can pray that is dissolves and does not become an issue. Also pray that nehemiah and us would deal well with the transition home.

So our baby boy is fixed! Its been a long road but we'd like to thank everyone for your thoughts, prayers and concerns. We'll update the blog with more information as we know it.

Matthew

Movin' on up...

well actually it was down to the 6th floor. They finally found some space for us on the pediatric floor. So now we're pretty much on our own. The nurse comes into give medication every once in a while but that is about it. We feed him, change him and do all the stuff that we would do in the comfort of our own home except its the hospital.

Since Judah is feeding well it sounds like the only thing from keeps us from going home is to get his non-clotting medication up to therapeutic levels. He still struggles to be off oxygen but he can still go home with an oxygen bottle. It sounds like if he doesn't get off it at the hospital it sound only be a month at home. So things are going well. Pray that we will get home this week because living in two places, home and hospital, is starting to take its toll after 2 weeks.

Ohh and Judah is now two weeks old although it feels likes it's been months since he has been born.

Here is a picture of him right after nursing...

Well I guess i know he's my son cause that's what I want to do after I eat also.

Matthew

Getting closer...

Judah is such a trooper. He will be two weeks old tomorrow night and he has had more IVs, pokes, and prods (not to mention open heart surgery) than I've had in my 29 years. The problem with IVs is that they only last so long.

The last one he had available failed today so we had to spend a long time trying to find another location for a new IV. After ruling out both feet and trying both hands, the IV therapy nurse decided to go for the scalp again. Although it looks bad, it seemed to hurt less than his hand and was easier to put in.

The big news of today is that we are ready to discharge. If there had been a bed available on the floor (also known as the med/surge floor) we would have gone today. We're hoping that a room opens up tomorrow so we can get in. We will miss the PICU but are ready to move on.

Judah's cardiologist is still stumped about the supposed blood clot in his left atrium. He decided that he'd try looking at it with an MRI today. The procedure was very long and didn't give us any more answers. Thankfully, Judah didn't have to be inutbated for the process and woke up shortly after they finished.

We'll write more tomorrow hopefully...but for tonight I'm way too tired to type any more.

Goodnight :)

Kirsten

Better, but still waiting...

Judah is looking better all the time. His color is great and he is becoming more alert. He is also a pro at nursing, which is something we had been told would take a long time to get the hang of after surgery. He's breathing well and only has to be on limited oxygen through the nasal canula. The x-ray of his lungs this morning looked "worlds better" than Saturday's, according to the doctor. In fact this morning they mentioned we would move out of the ICU into the regular children's floor of the hospital. Until....

So you know that blood clot I mentioned in the last blog post? The cardiologist was determined to find out if it is in the left atrium of Judah's heart or not but after trying for well over an hour, they still couldn't tell. In the end the cardiologist felt that the risk of it being a blood clot is too great to not treat it. The only reason the doctors didn't automatically start medication is that the medications we can use aren't easy to administer. This means that he will stay in the PICU at least one more day while they monitor how he does on the anti-clotting medication. This medication will be something we will have to go home with unless they can get a definitive picture that shows the clot outside of the heart. That said, it is unlikely that we will ever know whether it is inside the heart or not because the time to dissolve the clot inside or the topical hemostatic (material the surgeon packed around the heart to stop the bleeding) outside the heart will be about the same. The medication is a blood thinner so we will have to do blood tests after we administer it to make sure it's not working too well.

So here is the current list of medication we will have to do when we go home:

1. Aspirin -- this helps with the blood flow and is standard after heart surgery.

2. Digoxen -- this helps prevent the SVTs we had earlier. It kind of up in the air whether the digoxen stopped them or his heart had finally recovered after the surgery but again, better to be safe than sorry. I think he will be on it for about 6 months.

3. Blood Thinner -- This will last about 3 months and, as I said, involve administration and blood testing.

Thankfully, all of these drugs only have to be given once a day and it's a lot less then some heart patients which can easily go home with more than ten or even twenty medications.

Going into this process we were told by other parents to expect the unexpected and we are hoping that we are done with our unexpected complications. Pray that there would be no more and we can progress "normally" now. :)

Finding the blood clot was disappointing but a blessing. The ultrasound they found it on was one that was not even suppose to be given. It was only ordered because he had the bizarre chest x-ray yesterday, which by the way, no one can explain because it was completely different today. They may have found it later, but with a blood clot the sooner it starts dissolving, the less danger of a stroke or embolism in another area of the body. I guess it's hard to detect a clot unless it's seen on the an ultrasound. Much like the pre-diagnosis of the his heart defect, it was disappointing to hear but makes a world of difference for Judah, especially if it is inside the heat. Praise God.

Thank you to everyone who has been praying for us.

Matthew

Still waiting...

So I'm going to make this quick because we've had too many late night....

First, Judah was breathing well and everything looked good for him. But for some strange reason the x-ray of his lungs showed clogging in both lungs so much so that the doc ran to the room thinking he would have an impossible time breathing. Luckily that was not the case he was breathing just fine and his oxygenation was 100%. The doc said it is one of the bigger cases where the x-ray shows one thing but the patient is behaving totally different. Luckily the doc didn't go crazy because of the x-ray and take him off feeding and put him back on air. Judah has done great the whole day and Kirsten has been nursing him. They are going to get another x-ray tomorrow hopefully it will more consistent with his appearance and show all clear.

Also because of the x-ray of his lungs they wanted to look at the heart again just to rule out that it had anything to do with the lung issue. They didn't think so but while looking around they did find a blood clog. They were not sure if it outside the heart and just part of the operation or inside the heart. If its outside no big deal if it's inside then they would have to give him anti-clotting medication to break it up. They don't think it's inside the heart but they can't be 100% sure so they are going to watch it over the next few days to see if it grows. If it does then it most likely on the inside of the heart. If its doesn't then they are comfortable declaring its on the outside. Obviously that is what we want. :)

Good night,

Matthew

Our Boys and Dealing with the Unknown

Things are moving along well for Judah. I (Kirsten) had a lot of highs and lows throughout the day, but as I reflect on the lows in particular, I realize that some of them really weren't as big as I thought they were at the time. I've been averaging between 4-5 hours of sleep a night since Judah arrived. I know this isn't a good pace for me, but I keep reminding people who worry that I wouldn't be getting much sleep if I had a newborn at home either :) However, the lack of sleep is taking its toll on me emotionally.

The highs of the day were very high! This morning the doctors were considering another bronchoscopy (the procedure he had yesterday to remove the icky stuff in the upper left lobe of his lungs) but decided to try to move him off of the CPAP instead to see if he could try to clear it on his own by coughing, crying, etc. I was thrilled to see that uncomfortable looking thing come off of his face. For the first time since early Monday morning we were able to see his whole face at once, and even with all of the red marks from the tape, it was a beautiful sight to see. Even better than that was his Sats, which have stayed at 100 since the CPAP was taken off! This was a huge test for Judah and we were expecting to just give him a break from the CPAP rather than taking it off entirely. He proved that he can oxygenate himself just fine without it though, so they moved him back to a nasal canula.

Since removal of the CPAP, the swelling throughout his body has been subsiding and he is starting to look like the baby we sent to surgery in the first place. He has also been much more alert and we spent a lot of time just staring into each other's eyes today :) I know he's starting to feel better because his eyes were more open today than they ever have been. He was also allowed to eat for the first time today. We fed him mostly by the bottle because we don't want him working very hard. I did get to nurse a little as well and I think he's going to get the hang of it again without too much trouble when he's stronger.

For the first time today I found myself wondering how I could possibly handle any other setbacks. The end of the day showed a lot of progress and satisfaction, but the morning was another story. First of all, Judah had a very swollen belly from the air that was being forced down his lungs and throat from the CPAP machine which looked very uncomfortable. Also, the cardiologist came by to do an ultrasound because the PICU doctor thought is perfusion wasn't great yet. The ultrasound tech and the cardiologist said something quietly to each other at the beginning of the scan and looked concerned but didn't tell me anything. The cardiologist left without saying anything and the tech guy continued to look at Judah's heart for a really long time as if he were searching for something. I started trying to interpret his facial expressions, knowing that he couldn't tell me anything. And my mind started to race with questions and to be honest, fear, that he might have to go back to surgery. The situation was resolved when Dr. Woods, our surgeon, came by to check on Judah and the ultrasound tech let on that he couldn't find the left coronary artery. Because of Judah's abnormal coronary pattern, they weren't in the place he would have normally looked. So I was right in picking up that whatever they were looking at was a big deal, but I was so premature with the anxiety I was feeling. After talking to Dr. Woods the tech found the left coronary and confirmed that everything is looking great and functioning well.

The other thing that really threw me off was finding out that Judah's incision my have a slight infection. I didn't think the color of his dressing looked right but our nurse assured us that it was perfectly normal. When Dr. Woods saw it he immediately pulled the tape up and determined that there is either some fat necrosis happening or than a superficial infection has begun. He cleaned and redressed everything as well as ordered more antibiotics for the next 24 hours. He isn't at all concerned about it, but it could have become a big deal if it hadn't been addressed when it was. This was all happening immediately after the ultrasound was completed and before I had been informed that everything was ok.

Less than 30 minutes after that, Judah was in my arms, free of the CPAP, and sat-ing 100%.

This roller coster of emotions and/or anxiety about the situation is one of those things you never see coming until you in the mist of it.

Another one of the unknowns was how Nehemiah was going to react to the whole situation. Considering the situation he is doing OK but here have been more than a few days in which Matthew and I have hardly seen him. At first, the excitement of having Minnesota family around was a fun distraction for him, but as time has gone on he has had a harder time with our limited time at home and absence of the the rhythms and patterns he was used to. He's been having a rather difficult time going to bed and gets upset easily. We having started to make a schedule that allows either Matthew or I to be around when he is awake to help give him some more stability in this crazy time. We would love prayers for Nehemiah as he adjusts not only to this time that we are away but also for the future when Judah comes home. Also pray that he can be secure that we love him whether we're with him or not.

So in summary praise God Judah is doing well and God help us as we figure out how to love two boys in this crazy time.

Well I think thats it for tonight,

Kirsten (and some Matthew)

Progress

So for those you haven't had their child have major heart surgery let me tell you how progress is measured.

1. Stats

You have no idea how many numbers they keep on these kids. In the room is a monitor that has 3-6 numbers: Heart Rate, Blood Pressure, Blood Oxygenation, Fluid in the heart, respiratory rate and CO2. As a parent you always have some number you want to go up and down. Believe me you stare at those numbers thinking you can change them if you look long enough. For us that number was the Oxygenation, because of the transposition, then heart rate, because of the heart rate spikes from svt. Its easy to get stat envy in the PICU as we talk to other parents and hear their stats.

2. How many tube are coming out of the body

Judah started with around 11. 3 for blood drainage, 5 to get medicine into the body, 1 to measure heart pressure, 1 to pee, and 1 to pace his heart. Ohh and a breathing tube. I feel like I'm there is a song called "The PICU twelve tubes of christmas."

3 How many medications is he on?

Coming out of surgery Judah had around eight continuos medication running. Some for his heart, some for pain, some to sure he was getting enough nutrition, some to pump fluids in and some to make sure those fluids come out.

Its funny how your mind obsesses over this things. Better things get the closer you are to home.

So at the beginning of the day his stats were stable but his heart rate was a bit high, he had 9 tubes coming out of him (he got the blood drainable tubes out yesterday), 5 drugs pumping into him.

In order to open his lungs we need to do a procedure to clean then out because they couldn't get enough gunk out they usual ways. They needed to do this so he could get of the ventilator. If someone is on the ventilator too long then infection can occur which is not good for anyone let alone a baby ..... that just had heart surgery. The heart can be fixed but if the lungs develop a problem its almost as bad. The procedure work on cleaning out most of this lungs. You can ask me (Matthew) about what they did when you want to hear a scary story.

So because they were able to clean most of the lung out they took him off the breathing tube which is another major milestone. Although they did have to put him on a CPAP which blows air down his nose to keep the dirty part of the lung open so he can work it out his self. While not breathing entirely on his own he is in a much better situation now and far less likely for infection. BTW the lungs sewage system is crazy cool talk to me when you want your mind blown. So one tube down. He also go his catheter for peeing taken out and his arterial line on the right arm. As we stand now we just have 4 tubes for medicine and the pacer wires for his heart left in.

He also did better on his medicine and stats. Currently his only has 1 thing going into him continuously which makes sure he has the right balance of nutrients in his body. They will stop this once they feed him more. All the heart and pain medicines have stopped. He does get various ad hoc medication but those are mostly one time things. He also only has 4 stats left to look at and they are all very stable.

So hopefully they will take the CPAP off sometime tomorrow so he will be breathing completely on his own, take out some more tubes out and start feeding him breast milk. If he tolerates all of those things the we could move out of the PICU and out with the general population. We'll probably have to spend a few days there also. Hopefully we'll be there by Monday.

Ohhh .... Since most of the tubes were removed Kirsten got to hold him for the first time since the surgery which made her vary happy. And they put clothes on him for the first time in his life.

Matthew