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.

"Wean" on me

We've been busy the last few days! Landon has had a cardiologist appointment, a home health weekly weight check and a follow up appointment at the clinic in Denver between yesterday and today! He had his 4 month check up at the doctor's office last week (complete with shots ) - yes, we know he is 5 1/2 months old but he turned 4 months the week of surgery so we couldn't do his vaccinations then.

He is still gaining weight and growing pretty much on target (almost 15 lbs). He is still in the 10th percentile for height and weight for his age, but he's got a 50th percentile noggin! He is still pretty fussy (it's getting to be beyond "fussy" really) during feeds and starting to freak out when he's tired during the day too. We met with a dietitian today in Denver and based on what we talked about she wasn't really sure what the deal is. We're going to trying lowering the caloric density of his formula (from 26 kcals per ounce to 24) and she gave us a few different formulas to try if that doesn't work initially. We'll be starting him on solid foods soon but she wanted us to figure out what's going on first before we move on to that.

He also did some development testing today using the Bayley Scale. He did pretty well although despite my efforts to feed him at the right time so he'd be happy for it, he managed to only get a 30 minute nap on the way up there so he was pretty cranky by the time we started that. He's pretty on track in most areas and some of the areas he scored lower in could have also been do to him being angry.

As of yesterday we are weaning on the oxygen. So he has to be on it overnight and if he's napping in a separate room during the day but for the most part we can let him go without his oxygen while we're at home or if we're just out running around. We go back to the cardiologist in a month so hopefully at that point he'll tell us that we'll be off it completely.

Gary has been in Las Vegas this week for the Mountain West Conference Basketball Tournament so my parents have been here graciously helping me and enjoying their grandson! (when he's not screaming) We have been so blessed to have so much family be willing to travel to come see us and lend a helping hand! Well that's all I can think of for now- I will try to post some more pics soon!

A new normal

Landon has done really well since we got home a few days ago, especially considering that he had surgery just over a week ago.

His eating is off and on which is ok- we knew it would take him some time to get back to his old routine. He has moments of being smiley and happy every day which is encouraging - it helps is know he's not totally miserable all the time. There are, however, moments when he is totally miserable and those are not fun. He's still on pain meds (just over the counter stuff) round the clock for now and if we do a test and try to skip a dose of one of them to see how he does, we end up regretting it. So we'll just keep on those for now and hopefully we'll be able to cut back on them next week.

He had his first cardiologist visit (here in the Springs) since surgery today and Dr Brames said he is looking really good and doesn't seem to have any major concerns- although he did book us for 2 appointments next week. I guess we're back to seeing a doc or home nurse twice a week again for a little while.

Landon's heart rate is still low (in the 70s or 80s) but we should see this start to come back up over the next few weeks as his heart continues to heal. His sats have been pretty much where they should be which is good and it will just take at least a few more weeks for his body to get used to the new flow.

There are many challenging moments (including the pain meds and other meds, we are giving Landon 15 doses a day right now- pretty much all of those are challenging moments) but we are so grateful to be home where Landon can get good rest and be in a more familiar and relaxing environment.

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