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.

Finished - Everything Went Well... So Far

Everything went well with the surgery. No major surprises. They had a little difficulty with the various IVs, but nothing out of the norm for such a small little guy. His SATs are doing well right now and we will go back and see him soon. There is no timetable on when he will wake up. It could be today or it could be tomorrow. Now the recovery process begins and hopefully no major complications come up as we go. These are pretty major surgeries, especially for such a small guy, and complications are not too far out of the norm.

All of the grandparents are here with us in the waiting room. Landon got to meet his grandparents (Gary's parents) 20 minutes before the surgery. They drove 19 hours from Michigan over the last day and a half and got here 20 minutes before the surgery and got to meet him! More to come later, but both momma and daddy are feeling some relief. It is going to be hard to see him all outta sorts, but we just want to see him now!

Surgery Update

We just got an update on the surgery and things are going well so far. There was an extra component of the surgery they needed to do which we knew about as of this morning, and that part is done and they are part of the way done with putting in the shunt. There are so many details that may not make much sense but the important thing is that things are going well.

We're not sure how much longer it will be, but we expect to continue to get hourly updates.

Landon Needs Your Prayers - Surgery Scheduled for this Morning

Things are moving really fast, which I guess we are thankful for but the doctors have already looked at him today and determined that he needs the surgery (BT Shunt) today. They don't want to wait any longer because they know he is still in good shape and they don't want him to turn south quickly. He has been on more oxygen over the past day, but was still continuing to have good enough SATs.

Dr. Jaggers will be performing the surgery. Please pray that God steadies his hand through this procedure. While our initial reaction is out of fairness and why this has to happen to him when he is barely a week old we know that God's plan and purpose is far greater than the negative aspects of this situation. Please also pray that Allison and I can be comforted and confident about this procedure and that little Landon can heal quickly and come home with mommy and daddy soon.

I wish I had time to write more... but I will leave you with this thought from God...

Romans 12:2 - Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is--his good, pleasing and perfect will.

We will post an update once his surgery is finished. Thanks for you continued support and prayers.

Change of Plans

I think in the last post Gary mentioned the echo that was going to be done this morning. Dr Brames came in a few hours after the echo was done and told us that he feels that Landon will need the BT Shunt (1st surgery). His sats have been trending down over the last few days and Dr Brames said this is an indication of some narrowing in Landon's heart where the diminished chamber is that causes his sats to get lower and lower. As he grows and his heart beats stronger (just like all babies) the pressure will become greater, leading to an increase in the narrowing and decrease of his sats. The BT Shunt will provide an extra source of blood to the lungs that although it will allow some of the blood to mix (which is normally a bad thing), will increase his sats and hopefully make him more pink.

This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.

The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.

It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.

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

Not Good News, Not Bad News, Just News

Today we had another fetal echo to take another look at how everything in the heart is growing. We were hoping to have some more definitive information about how delivery is going to go and whether or not the 1st surgery will be necessary. Unfortunately, we didn't come away with the decisions we hoped for, but we didn't come away with bad news either, so it was kind of a mixed bag of emotions for us.

The blood flow through the pulmonary valve and arteries is the indicator as to whether or not the 1st surgery (the BT Shunt) will be necessary. Right now both the valve and arteries are measuring on the smaller side but not tiny. If they continue to grow at a good pace between now and birth, they might allow enough blood to flow to the lungs that the BT shunt wouldn't be necessary. The doctor seemed to think it could go either way at this point, so we'll have another appointment in about 5 weeks to see if he's able to see any difference one way or the other. Right now, we're pretty much counting on not knowing for sure about surgery until after the baby is born and they can do tests that will be much clearer than while he is in utero.

It also seemed apparent today that delivering in Colorado Springs might be more of a possibility than we thought. It sounds like the first few days after birth will be a lot of testing whether it is in CS or Denver, and if transport to Denver is necessary for surgery, it is unlikely it would create a critical situation. We're still struggling with what to do as far as that goes. The doctor had confidence that going to Denver for delivery is not really necessary but said that if we really wanted to do that then we could. He did recommend that if I deliver in the Springs, that I do so at Memorial Main Hospital- my OB doesn't deliver there, so I'd have to find a new OB for delivery (yet another doc to add to the mix!)

So no specific plan quite yet, but we're very glad to hear that there's still a possibility of skipping the first surgery all together! Thanks for your prayers!