One Year Ago Today....

One year ago today, we got news that Landon was going to have a heart defect.  A major defect that would likely entail three surgeries.  Suffice to say, it was the hardest day of our lives.  All the worry and anxiety and and the feeling of complete helplessness.  We knew we would have to wrestle God with this for 20 weeks before he was even born.  Seems like a blessing to know beforehand, but having to agonize over it for months before he was born was daunting.

Landon has spent approximately 39 days in the hospital.  Been to numerous other doctors appointments.  Had two surgeries and a catheterization.  Consumed bottles of medicine.  Fought acid reflux when he was trying to recover.  Had RSV.  He has dealt with a couple of other colds along the way.  Was on oxygen for three months at home, which brought many other challenges along with it. 

But you wouldn't know that he has been through any of this if you met him for the first time today. 

The other day he was playing in his exer-saucer and we realized some obvious cognitive development.  There is a little toy on there that makes different sounds when you push it.  If you push the same button four times in a row it begins to play music.  Landon likes the music so much that he will push the button as fast as possible to get to the music.  When he gets there he stops and listens to the music.  I love that he takes time to stop and listen to the music.   

Seems like a small thing, but to us it is awesome because this quells one of our biggest fears.  That he won't cognitively develop normally.  Little things like this make a huge difference.

I am so grateful for everyone who have been in his life these past 7 1/2 months.  He wouldn't be doing so well without all of the love and affection poured on him.  He laughs so much.  He laughs more in one day than I do in a year. 

Landon sleeps through the night now.  No coincidence that this started briefly after removing the oxygen at night.  The cord is quite annoying to have shoved up your nose.  He is also starting to make consonant sounds.  Every day is different, but better than the previous. 

Praise God for the miraculous start to his life.  

Gary

P.S. The bolded sentences are on purpose.  Go back and read them one more time to realize how amazing this journey has been for us.

There is no place like home

Landon was discharged today and is sleeping on the sofa with mommy as I write this.

He is doing well obviously, but just because we are home doesn't mean all is back to normal.  We will be meticulously handling him due to the incision, cleaning the incision, adding meds to the daily process and helping Landon's body adjust to the new blood flow, which can take up to a month.  He can experience headaches due to the new flow as well.

No need to stress over the new challenges.  We have our little boy home again and mostly happy.  Praise God.

Gary

No News is Good News...

It is nearly a month since our last post.  Landon is tipping the scales at 11 lbs. now and continues to develop everyday.  I (Gary) love coming home to him everyday.  Allison has done a marvelous job at home with him.  Through all the ups and downs we have come through that first surgery as a family, intact and stronger than we were before all of this.  Sounds cliche, but it is true.

The anxiety of the next surgery is starting to set in.  We are approximately 60-90 days away from step 2.  Clearly, I do not want to miss anything that happens in Landon's development, but I would be lying if I said I wasn't hoping to already be done with round 2 of his surgeries. 

Emotional roller coaster is one way to put it.  Now that he has much more of a personality it will undoubtedly be more agonizing to see him strapped to a bed with 20 machines attached and tons of different medications being administered through his various IVs. 

We are nearly two months removed from the hospital and the month spent there seems like a distant memory on most days.  But when I stop and think of what we went through, the memories are vivid and scary to recall.

Landon is taking to his bouncy seat toys actively.  He is swatting the hanging toys consistently and more aggressively.  He has also come close to grabbing these on a few occasions, as you can very clearly see him focusing on the toy and using some hand-eye coordination.  No official grabs yet.  No surprises there considering his genes and his father's heightened hand-eye coordination!  He is eating well on most days, but volume at times is still a challenge.  He continues to experience good weight gain so the volume is not too concerning.

Allison heads back to work next week.  She will be working Monday through Wednesday every week.  Her work has been fantastic through this process and was willing to let her reduce her hours so that she could be at home with him 4 days a week.  This is also critical to allow us to schedule doctors appointments for him on those Thursdays and Fridays.  We are very thankful that she can be with him 4 days a week. 

We have found a daycare option with a friend of ours.  Sadly her family has also been affected by Congenital Heart Defects.  It is a huge blessing to have her take care of Landon and her experience as a mother of kids with heart defects will no doubt be a huge asset in Landon's care.  I am looking forward to Landon being around other kids too as he grows over the next year or two.  Mindy, who will be providing his daycare, has two boys.  One is six months and the other is 4-years old.  While tough to give your kid to anyone, I believe this is really an ideal situation for us and for Landon.  Daddy gets his lunch partner back for Monday through Wednesday too.  Bonus!

Merry Christmas!  9 days until Christmas.  Where has the time gone?

       

Little Landon Might be Coming Home Today!

We are trying to keep our emotions tempered but we were told yesterday that he would come home today. Last night he had a brief dip in his SATs, but is still doing relatively well. Allison and I roomed-in last night at the hospital and took care of him all night for the first time without all the monitors and cords hooked up to him. They try to do this to prevent us from being terrified at home without a monitor and encourage us to focus on him and see if his color changes from the beautiful pink that all babies should be. The pediatric cardiologist is going to do another echo on him this morning to ensure that he can in fact go home. Also, they had his hearing test redone on his right ear and passed! False alarm there!

I got an hour of sleep, but the good thing is that I have been able to let Allison finally sleep some. The poor mommy has been worried sick about him and been burning the candle at both ends trying to produce enough food for him to provide him the antibodies that are so valuable that come from her food. It was great to have Landon around all night. I am getting the hang of this father thing for now, though when my body catches up to me due to the lack of sleep this will get tough.

We have at least 9 weeks to go. Please keep praying for him. These next nine weeks and beyond are critical for him to skip that first surgery.

I have felt very blessed by the nurses that have been around us. I have learned a few tricks just being around them over the past week and feel much more ready to keep this guy happy when his body is needing something. That is it for now.

I will leave you with one last thought. I was thinking last night what Landon would say if he could speak right now... it is decidedly so that he would say.... beat the Yankees!

Gary

Update #1: Things looking good so far

Hi all! It has been a wild ride so far, but things are looking good so far. The pediatric cardiologist gave us some positive news this morning. The pulmonary valve that needed to be at least 4-5 mm in width (was only 3-3.5 mm a month out and they weren't sure it was going to grow) was 6mm! 6mm is the normal size. Praise God for this small miracle! They are feeling good that he won't need the first surgery now. He is breathing on his own, though he has many instruments and tubes hooked up to him to monitor him. His SATs are in the normal range fairly consistently, which is fantastic because that means he is adequately oxygenating his blood throughout his body.

Mom is doing well and recovering beautifully. Please pray that baby Landon eats well over the next few days. There is potential for him to be discharged on Wednesday, but we are keeping our hopes tempered on that. An amazing ride so far, but THANK YOU to everyone who has prayed for him.

By the way, the pictures don't do him justice (while those are still cute). He is much cuter in person! I am still waiting to hold him for the first time. Allison has been holding him a lot today as they begin to get him to breastfeed. She is loving just holding the little cutie. That is it for now. More to come as we find out, but Wednesday could be a very pivotal day. Please continue to pray for him, but please also offer thanks for the prayers answered thus far.

Papa Gary

Denver Appointments

So as Gary said, we had a few appointments in Denver on Friday afternoon. We got up there early and had plenty of time to park and find our way where we needed to go. We met an OB at University Hosiptal and a pediatric cardiolgoist for a fetal echocardiagram at Denver Children's Hopsital. The two doctors as well as the nurses at both offices were great. Both of the doctors were straightforward and knowledgeable, but also specifically made efforts to address the emotional side of what we're in the midst of. They reiterated that there is nothing we could have done to cause or prevent this heart defect and talked some about the things that we will need to be prepared to face together as we go through this process.

Between the two appointments, we had a few major "takeaways". One- the heart valve that dictates whether or not the baby needs that 1st surgery is looking good right now. Blood is flowing through it, but it doesn't look like too much. If there is too much or too little blood flowing through that valve at birth, then surgery will be required within the first 7-10 days. However, if this valve continues to remain a good size, there is a possibility that he could skip the first surgery altogether. This would be a wonderful thing to give him time to grow and get stronger before the 2nd surgery which now sounds like it would be around 4-6 months.

Two- If it is pretty certain the baby indeed will not need surgery then I may not have to go up to Denver to deliver; I could instead deliver at the hospital less than 10 minutes from our house as originally planned. This is still a very tentative thought, and the whole team of doctors will collaborate to make this decision as they continue to monitor the baby's heart. The possibility of delivering close to home is wonderful, but also a little bit frustrating, since now I'm not even sure which city I'll be in. Of course, being wherever Baby W can get the care he needs when he's born is the MOST important thing. All the same, I'm a planner, and having a set course of action helps me prepare, but I guess I need to get used to a lot of changing plans!

Three - if I do end up going to Denver for delivery and surgery for the baby, then they would want me to be up there staying close by the hospital at about 36-37 weeks. This came as a little bit of a surprise to Gary and I, because we hadn't anticipated I'd have to be up there that early. I could likely get hooked up with the Ronald McDonald house or something, but just the idea of being away from home for that much longer just throws me off. However, if it means that the baby can be in as controlled of a setting as possible with the care he needs close by, then I'll do whatever I need to!

So overall, the day was filled with some GREAT news that the baby might not have to go into surgery right away and some unexpected news that if I might have to get up to Denver a lot earlier than we thought (if I end up there). Overall, we feel great about the team of doctors that we have in both cities and the care that will be provided no matter where we end up.

After a long afternoon of appointments, we enjoyed a nice dinner at D Bar in Denver. It's just a delightful restaurant I've been to several times that Gary hasn't been to so I wanted us to go together. We enjoyed some tasty food and had a good chance to process some of what we heard. (There was a lot, believe me, this is the cliffs notes version.) Now we just wait for more fetal echos in several weeks and hopefully the doctors will be able to make the call about where they want me and when!

Allison

God's Purpose

I (Gary) wanted to also share a few thoughts that I feel God has been putting on my heart over the last three weeks.  I know that at least for me I have felt tremendous peace the last week or two.  I am supremely confident in that God will only give us as much as we can handle. 

Not that I/we are wishing for such circumstances, but we feel confident that God will provide for us physically and emotionally through this process.  I also look forward to the process (as hard as it will be) and know that God is going to bless my son with a tremendous story no matter what happens.

We have been reading a few other blogs in the process and that has provided tremendous hope for us; reading through the process and the emotional roller coaster that will ebb and flow.  I have been amazed at how someone living a 1,000 miles away, whom we have never met, can have such a profound impact on our life.  If you have eight hours and want to read about a tremendous family, knock yourself out here.  

It's funny how in church I constantly hear about life circumstances that families go through and wonder why I never felt like life had been that hard for me.  I am sure my faith will be tested beyond comprehension throughout this process and to be honest, despite a few hard initial days, this has been easy thus far because there is nothing we can do right now except lean on my relationship with God and trust. 

2 Corinthians 12:9

New Living Translation (NLT)

Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

Baby Walenga's Heart

It’s been an interesting few weeks for us to say the least. We decided to start this blog as a result of some news that we’ve gotten about our baby recently and to share what’s going on with our family- baby related or not.

About 3 weeks ago, we went in for the “big” ultrasound. I was at 19 weeks and we were excited to see how our baby was growing and developing (like any parent!) It was amazing to see the arms and legs, hand and feet, spine, organs- the body is so complex and amazing! We had decided to keep the baby’s gender a surprise so we dutifully looked away when the ultrasound tech looked at “that” area (not that we would have known what we were seeing anyway). Baby W was measuring right on track as far as size and weight She tried multiple times to get a good view of the 4 chambers of the heart, but baby had settled down and wasn’t moving so it was difficult for her to get a good angle. My normal doctor was in delivery, so we met with a midwife to go over the results of the ultrasound. She brought up the fact that they couldn’t get the view of the heart that they’d like and recommended that we see a perinatologist (a doctor of maternal and fetal medicine- usually dealing with high risk pregnancies) just in case it could be something wrong with the baby’s heart. We were slightly concerned, but felt that everything was probably just fine and it was just the position of the baby. After all- the heartbeat had been normal at every appointment so far, so what could be wrong?

I went to the perinatologist last Monday (Gary wasn’t able to join me at this one) and they performed another full ultrasound. I got lots of pictures of the baby, which was very fun. The ultrasound tech sent the images to the perinatologist and went to check and see if he got enough views or if he wanted to take a look himself. A few minutes later the perinatologist returned and started to use the ultrasound machine to get a good look himself.. I was starting to get a little bit worried at this point. He ultimately told me that he was pretty sure something was seriously wrong with the baby’s heart. He told me that instead of 4 equal sized heart chambers, he was seeing was 2 larger than normal heart chambers, a very small 3^rd chamber and no 4^th heart chamber. He said that he couldn’t make a diagnosis, but was pretty sure that I’d likely have to deliver the baby in Denver and the baby would have to have surgery soon after birth. He said that we’d be able to get an actual diagnosis and plan of action from the Pediatric Cardiologist who we made an appointment with that Wednesday (2 days later). When I left the office, I was pretty shocked. We hadn’t had any indication that anything was wrong to this point. I had finally moved past the initial 1^st trimester worries and was even a little bit proud of myself that I hadn’t been so anxious about how the baby was doing.

We had even opted not to do any of the genetic or chromosal testing because we didn’t want to give ourselves extra reason to worry if we got a “false positive” on something. I had tried to keep the mentality (for my own sanity) that we had a healthy baby, and if something came up contrary to that, we would deal with it when it came. There is enough to worry about with a pregnancy and infant without adding to it. Well it looked like that mentality was pretty much shot. The next few days were very long for both of us. We cancelled our plans for those few nights to just spend some time together and try to wrap our minds around this. I felt like the thing that would bring me the most comfort was being as informed as possible. We did research about congenital heart defects in general, the specific defects, treatments etc. We just thought having at least some information when we went into the appointment with the pediatric cardiologist would help us to avoid the shell shock of what we might hear.

We were both pretty nervous going into the Wednesday appointment. He did a fetal echocardiagram (echo) and spent a lot of time looking at different angles, views and specific veins, arteries and valves before he talked to any of us about it. We didn’t know much of what we were looking at, so it was pretty quiet for a while. Despite the anxiety I was feeling, I was still amazed at how advanced medical technology is and how much detail can be seen by just holding a little wand up to my stomach. This was the 3^rd ultrasound, and at every one, the baby had been extremely active so they kept having to switch angles to get what they were looking for. After a long time of silence and looking at things that neither Gary nor I understood, he finally said he had seen everything he wanted to. He drew us a (pretty impressive) picture of a normal heart and then a picture of what our baby’s heart looked like. He confirmed what I had been told on Monday about what he was seeing in the chambers. He said the name of the defect was Tricuspid Atresia. This means that the tricuspid valve between the right atrium and right ventricle didn’t form properly. Since blood couldn’t flood through this value, the right ventricle didn’t form at all. The right ventricle is usually what pumps the blood into the lungs to be oxygenated so the blood isn’t making it into the lungs like it needs to. The treatment of this defect involves 3 surgeries over the first 3 years of life. He told us the first surgery would likely be within the first week after the baby was born, the 2^nd one would be at 6-12 months and the 3^rd one would be around 3 years. The goal of these 3 surgeries is to reroute the blood from flowing into the right side of the heart to passively flowing directly to the lungs. There are plenty of complications that can come up with each step in the process. From what we understand, the baby should be ok at least until birth because the oxygen is drawn from me instead of from his/her own lungs right now. He reassured us that there is no known cause for defects like these and that it wasn’t something that we did or didn’t do that would have caused this. He also said that it was very unlikely that there was a chromosomal abnormality that was linked to the heart defect because of the specific defect and since the baby was at a normal size. He didn’t even really recommend an amniocentesis so we were glad to hear that for now.

We had discussed after the appointment on Monday the possibility of changing our minds and finding out the gender. We figured that since we’ll have a lot of surprises and unknowns about our baby over the next few years, this could be something that we could know and hold onto. On Wednesday we asked them to tell us and we found out that it’s a BOY! With all the difficult news we received that day, it was so nice to have something happy to walk away with.

We’ve got a long few years ahead of us! Luckily we have heard great things about Denver Children’s Hospital so it seems like we’re in a good place to get the right treatment for our little boy. It’s amazing that even at 22 weeks (what I am now) that we can already know and prepare as much as possible for this complication. However, it’s also very difficult because there is literally nothing we can do to help our baby from now until birth except pray and put him in God’s hands. We know that this news is not a surprise to God and that he will provide for us in every way during each step of the journey.

We’ll use this blog to keep everyone posted on different things along the way. I promise, not all of the posts will be as long as this one J. We would appreciate your prayers along the way. We’ve both been kind of in pragmatic mode since hearing the diagnosis just trying to get information and to make decisions that we can make now as opposed to later. I’m not sure if it just hasn’t fully sunk in, if we’re still a little bit in shock, or if God’s just giving us peace right now. Until the baby is born, prayers that he continues to grow at a normal rate and that he reaches full term before birth. And for Gary and I, prayers that we’ll continue to have peace and that we’ll be able to trust God through the entire process, and that going through this will bring us closer together. I have no doubt that we’ll have a very tight knit family by the time this is all said and done!

- Allison