Overdue update, sorry!

A month has flown by since I posted last. Judah was 13 lbs. 10 oz. when we were at the doctor on Friday (but we think the scale must have been off because we really didn't think he could possibly have gained that much already)! He smiles at me all the time and he loves it when his brother and I sing. He also loves baths and playing on the floor. He does not love tummy time, but we're working on it :) He had lost most of his hair from when he was born, but just this week Matthew and I noticed that some is starting to grow back on the top. I can hardly believe that he will be 3 months old 5 days!

We've been back in for an echo that showed no change in the "clot" and we've been continuing with the coumadin to help his body dissolve it. On April 6th we'll go back for another echo. At that point if there is still no change then we will probably stop with the coumadin. After a couple of months the body grows a layer of tissue over a blood clot which stabilizes it. Of course we'd rather the clot go away altogether, but if it does stabilize then we can go off the coumadin because blood cells should no longer attach to it. Judah's heart is continuing to function great, despite the "clot", so even if it is permanent, it isn't a major concern.

In the last post I talked about Judah having blood in his stool and how it went away after a couple of days. Well it's been on and off ever since and we've been trying to figure out what's going on. I cut dairy out of my diet to see if he had a milk protein allergy which seemed to make a difference at first, but it didn't last. Our pediatrician referred us to a great GI doctor at Mary Bridge who we saw on Friday. All of Judah's symptoms lead us to think that it is still some type of food allergy so now I'm totally excluding dairy and soy from my diet. I'm also significantly limiting nuts, fish, and eggs. He still had bright red spots in his diaper this morning after being on the new diet for a few days, but we were told that it may take some time before it clears my system entirely. Of course the coumadin is probably making him bleed more than he would otherwise. It's been a tough few days trying to figure out what I can and cannot eat, I thought dairy was hard to avoid but soy is in so many things! I'm so thankful though, that I'm still able to breastfeed him. If he had not been gaining weight as well as he has been, I would have most likely had to quit a while ago and switch over to formula. The day may still come when I'll have to give it up so I'm treasuring each opportunity that we have for now. We're hoping that everything will clear up soon and then I'll just stick to the new diet for a year or so (when many babies outgrow these kinds of allergies) or until I'm done nursing.

We've been out and about more and more especially as the weather's been improving. Dr. Park said that Judah's immune system should be pretty strong by now and that he's far enough away from surgery/bypass that getting a cold shouldn't hit him any harder than any other baby his age. We've been thinking that perhaps April will be our month to really re-enter the world and start going back to church and do a little more shopping during the day. (I currently do all of the grocery shopping late at night :) ).

As always, I have more to say but it's 2:20am already and I have to call it quits for tonight.

Thanks for checking in on us :)

Kirsten

Processing...

I have so much to say tonight, hopefully I can get most of it out before I forget! The picture is from last week...it is the first one we've shared publicly of Judah's scar. I hope it doesn't bother anyone but what I see is a super relaxed, happy boy who looks like he's thinking, "Don't worry mom, I've got this."

I don't even know where to start. I apologize for not posting for so long. I know many people have been wondering how Judah is doing and have continued to pray without our asking. My dad has gone back to Minnesota and so now we're trying to learn how to do more of this on our own. I probably won't post very often so please assume that no news is good news. We still have a ton of support through Matthew's parents and sister, as well as from many friends who've offered help and we know we're not alone, it's just different not having live-in help :).

Tonight we had the monthly Little Mended Hearts support group. It's a group that meets at Mary Bridge for families of children with congenital heart defects. The evening was centered around a family who had just experienced the loss of their 8 year old son...they shared their story. The father started by giving glory to God for the life of their son and returned to that theme throughout the meeting. I really couldn't comprehend the faith that I witnessed as they recounted the past 8 years and in particular the last few hours of their son's life. Their son, Jacob, died in the emergency room at Mary Bridge while Judah was in surgery at the same hospital on December 28th. They didn't see it coming, he had actually been doing pretty well for a guy who'd had multiple surgeries and more than his share of complications. Jacob had even joked with his dad about his ambulance ride shortly before he passed away because they didn't turn on the sirens and that would have been more fun. I had so many emotions running through me as I listened. I was shocked, awed, humbled, challenged, encouraged, and ultimately and oddly settled by the conversation. Little Mended Hearts is by no means a Christian group, but at the end I really felt like we should have prayed because I felt the presence of God in the room, holding us, loving us, and giving us exactly what we need to live in this moment.

Over the past few weeks I have slowly been slipping into a mental state of trying to control our situation and without realizing it had been functioning from a "what I want" point of view. What I mean is that when something wouldn't go the way I wanted I would get fearful and frustrated. Case in point, Judah has been doing really well until yesterday when he started having blood in his stool. I was sure it was blood in his diaper yesterday morning and that's when I started living in fear again. His diapers looked worse throughout the day and we went through getting his INR checked (normal INR is between 0.8 - 1.2 but because of his suspected blood clot Judah's INR is supposed to be between 2.0 -3.0 with the coumadin...it was 3.9 last week at our appointment, which is pretty high and puts him at higher risk for bleeding) and getting stool samples to the lab which was not easy (imagine using plastic wrap on a baby's bum for an afternoon, waiting for him to poo and then trying to get it into little plastic containers, it was pretty gross, kinda' stressful, but really funny looking back on it :)) We didn't know what was causing the bleeding and during the evening hours every diaper looked worse and at 1:30am he had one that was so awful I started to wonder if we would be back in the PICU sometime in the morning. That diaper was the climax of the whole thing, his diapers slowly started to improve and by this afternoon there was no blood and we haven't seen any since. We have done a few things but we don't know which of them stopped the bleeding or if it just stopped on it's own. First of all I stopped nursing in case he has an allergy to milk proteins. We gave him pedialyte until this afternoon when we started on soy formula. I have cut milk products from my diet and our pediatrician said that I can try nursing again tomorrow and we'll see how it goes. We also skipped last night's coumadin dose and started him on probiotics in case it is a bacterial issue. I don't know if any of these interventions are what stopped the bleeding, but I am just thankful that it seems to be over and we'll see what the rest of the lab results say about a bacterial infection tomorrow sometime.

Late last night I had been sharing some of what was happening with a friend we met in the PICU and this morning I woke up to the most encouraging message from her which helped to set a totally different tone than what I had ended the previous day with. God gave her the exact words I needed to hear and although I still struggled throughout the day, I kept going back to them. Her son has had a much more complicated journey than Judah, and hearing her encourage me to trust God is so powerful and humbling.

You know I as I listened to Jacobs dad tonight I realized how much I just wasn't there yet. I mean, I'm not really giving God the glory he deserves for saving Judah's life and giving me today and all of the days before today with him. The timing of tonights meeting was so perfect for me in my processing of everything. My friend's encouragement warmed me up, and in hearing Jacob's story I started to feel like in a way I was starting to heal...which wasn't even something I realized I needed...and I'm starting to know the goodness of God in a more powerful way.

It's almost 3 am but all I can think of right now is to be thankful. God has given me everything I've needed. I'm not sure if I said this in a previous post but shortly before Judah was born I heard someone say that God does sometimes give us more than we can handle so that he can show us that He is in control and will hold us, provide for us, and give us the grace we need in hard situations. This is so true for me tonight.

I'm also so thankful to all of you who have been reading our posts, praying for us, and leaving so many messages and comments both here and on facebook. I can't tell you how much every encouraging comment means. I've never met some of you, but your words have been so appreciated. I've been having a hard time going to sleep these past few weeks and I often sit up at night re-reading the comments on the blog and facebook and it has helped me a lot.

Well I'm sure I have forgotten half of what I meant to say when I began writing but I am going to stop for tonight, give Judah a bottle, and go to bed.

Thank you again and with all my heart, Praise God!

Kirsten

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