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.
Showing posts with label Congenital Heart Defect. Show all posts
Showing posts with label Congenital Heart Defect. Show all posts
Wednesday, May 16, 2012
Friday, December 16, 2011
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?
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?
Monday, June 6, 2011
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.
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December 2012