This time last year

This time last year seems like it was yesterday and years ago.

My life was full of

-feeling HUGE, but not ready to have him :)

-Dr. appointments and non-stress tests for Judah

-trying to avoid heartburn at all costs

-preparing for my family from Minnesota to arrive

-feeling him move and hiccup a lot!

-cherishing my time with Nehemiah before everything would change

-wondering and waiting:

-What would he look like?

-What condition would he be in right away?

-How would the birth go?

-What should I even be wondering about? :)

Little did I know that only one week from today, he would come, FAST and in really tough shape.

I'm really not a blogger, but here goes...

So I wrote the following post almost three months ago...

I emailed it to Matthew to proofread and never actually posted it after that. So this is a horribly out-of-date post, but hopefully it will bridge the gap between my last post in April, and the next one that I hope to write (but don't count on me doing it any time soon!).

September 23rd, 2010

So much to say!

This post is a long time coming and I appreciate your patience with me. Usually these posts involve me staying up into the wee hours of the morning and I have been choosing sleep instead of updating, I'm going to do this post in sections because there is that much to say!!

Judah's Heart - Just yesterday we were back at Northwest Children's Heart care for a cardiology appointment. I seriously feel like some of the people that work there are my family, and it is always great to see them. Everything looked great and here is the best news ever, drumroll please...there was no sign of the "clot/undefined blob" on the echo! Matthew and I were stunned when Dr. Park told us. Matthew of course wanted to know where it went, thinking there could be a free roaming clot or something, but Dr. Park assumes that it finally reabsorbed. Everything about the "clot" has been a bit mysterious so we're just going to be thankful that it isn't showing up anymore! Praise God! Judah will still take digoxin until he outgrows his current dose (22 lbs is our goal, he is currently 18.9). In six months or so (assuming he's 22lbs.) we'll quit the digoxin and bring him in for an EKG within a week to see how his function looks and to be sure that he doesn't go back into SVT without the meds. He is still also taking aspirin, but Dr. Park said he may be on that for life because of his funky coronary arteries. If all goes well with taking away the digoxin in six months we will drop to yearly cardiology appointments. It seems crazy that this step is right around the corner already.

Judah's Tummy - A lot has happened on this front as well. At the time of my last post I had removed all dairy and soy from my diet and most of the bleeding in his stools had stopped. However his stools were still really runny and full of mucus. Our GI doc recommended further restrictions so we removed nuts, eggs, and all fish except salmon from my diet. Those changes continued to help but there was still mucus regularly. The next step was removing all corn from my diet I thought that one would be easy, but you would be amazed at how many things are made with corn! Around the same time I cut out corn we switched to a new probiotic and started him on his first solid food besides cereal, the wonderful avacado! This was the right combination and within a week all of the mucus was gone and I haven't seen a trace of it since. Fast forward to last week, we went back to GI and decided that I can begin to reintroduce a few things, doing a two week trial of each thing before trying something else. Tomorrow will end the two week trial of nuts and so far, no reactions! Next up will be either fish, eggs, or corn, or perhaps I'll add another food to Judah's baby food diet (that takes a 7 day wait rule between new foods) Needless to say, it will be a while before we get back on everything and we're waiting to reintroduce dairy and soy into my diet until he is over a year old. But hey, at least we're headed the right direction! The perks of this complication was that I have felt a lot better and have finally been able to lose some weight without a whole lot of effort.

Judah as a "normal" 9 month old - Judah saw his pediatrician, Dr. Cieri, today for a regular "well-child" visit. If you don't see his scar, you wouldn't know he was a heart kid. He is crawling quite well on all fours, pulling himself up on furniture and our legs and cruising around while holding onto things. He feeds himself cheerios, peas, and he really loves steamed broccoli. His first official word was not "mommy" or "daddy", it was "kitty". He has five teeth and he uses them when he wrestles with Nehemiah. Yes, I did say wrestle! I didn't know babies could do it, but Judah loves to crawl all over Nehemiah making growling noises and will even blow raspberries on exposed skin!

The rest of us - Nehemiah is a pretty typical big brother. He loves Judah and wants to be with him, but he's getting more and more possessive of his toys and has been known to wrestle a little too hard with Judah. He really likes to pick his brother up by himself, which so far has gone ok, but makes me a little nervous :) And of course, he wants to feed Judah, or bring him a toy whenever he cries. The boys have been sharing a room for about a month now, which has helped Nehemiah's sleeping habits a lot because now he doesn't mind staying in his room with his brother.

Judah looks so much like Matthew as a baby. The bright blue eyes and light blonde hair are definitely from that side of the gene pool. Judah also loves the laptop and anything electronic. Perhaps he will take after his daddy in more ways than just his looks. He certainly lights up when Matthew get's home from work every night!

Me - I'm different. All children challenge you and change you, but I am not even close to the same person I was nine months ago. I think about Judah's heart friends every day and read stories about other heart babies and I am in awe of our Creator. His provision for me, and for all of our friends, even those who have been through the worst situation, losing their son or daughter, was incomprehensible to me before I was given the privilege to walk through this. Every couple of days I read a new blog, or see a facebook post from a friend we were in the hospital with, and I am brought back to the nights when we didn't know if Judah would be ok. I remember the mess that I was, and I remember and still feel with my whole heart, the Love of my Father who not only healed Judah's heart, but held me while mine was breaking. I am more in love with my God now than I ever knew I could be. I also feel a lot more and cry a lot more, but this is good. I breathe more deeply and revel in how He made our bodies, even the "broken" ones. I love to lay my head on Judah's bare chest and listen to his heart beat, it sounds strong and steady. The sound of it grounds me again in the truth that there is an author and giver of lIfe who is in control so I don't have to be, and that is so good.

The End - I don't think I'll be writing many more entries on this blog, if any. This has been a great tool for us to inform all of you about what has been going on, and a great way for us to be encouraged by your comments. We were certainly running on prayers for a little while there, and it has been a joy to worship and rejoice with you throughout this experience. But as you can see, I am not a true blogger, I just don't have the dedication to keep it up :) I'm ok with that, I wish I was cool like my blogging friends, but God must have other plans for my time.

"Thank you" will never be enough, but just the same, thank you from the bottom of my heart,

Kirsten

Renaming the "Clot"

Today was a big day for Judah. He just went to bed without taking coumadin! We had an appointment with Dr. Park this morning and we got to have another echo. The "clot" still hasn't changed so here is the list of things it could possibly be:

1. A clot - by this time it would have been covered with endothelium and therefore stabilized enough so that it is very unlikely that it could break off or grow

2. Scar tissue from the surgery

3. Part of Judah's actual anatomy that wasn't noticed before

4. Surgicel - the blood clotting material that the surgeon packed around Judah's heart after the surgery when he was having excessive bleeding problems (although his body should have dissolved this by now if it was there).

We will have another echo in a month to be sure that there is still no change. I'm trying to think of a good term to use for the "clot" as we've been calling it...right now I'm going with the "undefined blob". If you have any ideas on potential names for it please comment below :)

I am so thankful to be done with coumadin :) Lately Judah has really been sucking on his hands and scratching his face and because of his bleeding issues normal little scratches look like huge gashes all over his face. I was embarrassed to take him out because people worried about his face. I promise I cut his nails all the time! Also, once his INR goes down, the risk of bleeding from tummy upset goes way down (in case I make a mistake and accidentally eat something with dairy or soy in it). And I know I'll worry just a little less when Nehemiah is trying to squeeze his brother with a big hug :)

Besides the undefined blob, Judah is doing amazingly well! He was just shy of 15 pounds today and is in the 96th percentile for height and the 68th percentile for weight. The teeny tiny leak that was in his neoaortic valve is gone. (He still has the tiny leak in his neopulmonary valve but that one isn't a big deal.) They were able to get a great view of his coronary arteries and the branch of his pulmonary arteries and it all looks great! His heart function is wonderful and with his weight gain Dr. Park said he really is just like any other baby at this point. He even gave us clearance to go to Minnesota this summer and Hawaii in the fall!

Today was also special because I was able to meet a new friend who was born with transposition named Joel, and his mommy, Kari. Joel has been in the PICU for quite a while now, and has had some of the same complications that Judah had at first, and a few more. For those of you who have been praying for Judah, please pray for Joel now. They have had so many ups and downs and they don't know when they'll be going home. When I went up to meet Kari and Joel I was able to see Sherrie and some of the other nurses that we had when we were in there. It felt like I was able to see family that I hadn't seen in a long time.

In other Judah news, his GI bleeding has pretty much stopped since I removed soy from my diet. I've learned that I really like hemp milk and coconut milk ice cream, and although I have to be really careful about how I eat, I am certainly not starving :) We get to see the GI doctor next Tuesday to check on his tummy issues. His stools still don't look great, but at least there isn't visible blood in them any more! I've actually been thinking about how the coumadin probably helped us identify Judah's food allergies in the first place...if he hadn't had the bleeding, who knows if I would have noticed anything wrong and investigated his allergy issues. So in a way, I'm thankful for the coumadin.

One of Judah's favorite things to do these days is bounce in a standing position while I hold him. We took him to the Mended Little Hearts meeting tonight and he bounced away as I introduced him to our friends who have been hearing about him for so long. He also made it to our family's Easter gathering and enjoyed watching his brother gather eggs and chase my cousin's pug, Chloe, around the house. It feels so good to be doing the "normal" things in life like shopping as a family and chasing Nehemiah around the block on his bike (Judah has been spending a lot of time in the front pack). We've been seeing more family and friends and we've started going to the gathering at our church again too. It will be a while before I'm ready to stick Judah in a shopping cart or put him in the nursery at church, but at least we're out and about!

I'll post again in a month if we have any new news! Thanks again for your prayers and words of encouragement.

With love,

Kirsten

P.S. Below is the product of me trying to write this blog too late at night. I was going to delete it all when I came back to edit this post, but it is just so typical for this time in my life and I think it should be recorded :) Apparently I fell asleep with my finger on the "x"

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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