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.

Our First Week at Home

It has been a crazy first week at home with Landon (as anyone would expect with a newborn!). We're still trying to get down a "routine" and find our way through the first phase of parenthood. My (Allison's) mom left last Thursday and Gary's mom got here on Saturday to stay for about 10 days so we have had lots of help which has been a huge blessing! Landon has been doing well- we still don't have a schedule nailed down yet- he keeps jumping back and forth between "eat every 3 hours" and "snack all day long" which makes it hard to establish any eating/sleeping patterns. His eating is still not quite where it should be, but we're hoping he'll continue to make improvements!

We have doctor's appointments all the time it seems! Last week he had 2 visit from a home health nurse (which is great because we don't have to go anywhere!) and appointments with the pediatrician and cardiologist (both in Co Springs). This week we have 2 home health appts again as well as one in Denver yesterday for a follow up with the team there (surgeon, nurse practitioner, dietician, etc) and the cardiologist here. It was so cool to be at the Children's Hospital on Halloween- all of the staff and so many kids were dressed up in costume and having a great time- you'd hardly know it was a hospital at all! It seems crazy with all of the appointments, but I'm grateful to have so many people checking up on Landon! The team in Denver wants to see him eating a little better and gaining weight more rapidly than he has been. Yesterday we was 8 lbs though, so he definitely has been growing since birth when he was 6lb 9oz!

Gary is back at work aside from trying to make the occasional doctor's appointment but it's a very busy time in college sports so he's needed there as much as possible! Right now the biggest thing for Landon is gaining weight so that's our focus right now and it takes up a lot of my time! He's still in fortified breastmilk and if he doesn't gain weight at the pace they'd like to see then they would likely up the calorie count of the fortification but at that point (28 cal/oz) it can start to be really hard on his digestive system to process. A feeding tube it also not out of the realm of possibility but we are really hoping to not have to go that route.

It sounds like the 2nd surgery (the Glenn Shunt) will likely be when he is about 4-5 months old so that is a ways away but he's already 5 weeks old so it will be here before we know it! We have been so overwhelmed with all of the cards, emails, facebook posts, etc of everyone's prayer and love for us and Landon. We even had a "welcome home" sign greet us when we got back from Denver and found that our freezer had been stocked with meals! Thanks so much for your prayers and support- it will be a long road for sure but God has shown us time and time again that He will provide everything that we need for each day. I'll try to post some pics to the blog tomorrow- many of you have seen them on facebook I'm sure. Landon is such a cutie (in my unbiased opinion :-) He even had a costume for Halloween- he was a very content little turtle!

Quick Update from Home

We're on our 2nd full day at home now and Landon is doing well! He hasn't gotten down good patterns for eating and sleeping quite yet (he was up 4 times last night between 10:30 and 7am- maybe that's normal for a baby but it's a little much for mommy!) but he seems to be taking steps towards 60 ml every 3 hours, which is where they want him.

The home health nurse came yesterday and did an assessment and weighed him (his weight was up, but it's also a different scale than he's been on before, so have to take that into account) and she'll be coming by twice a week for at least a few weeks. He has doctor's appts tomorrow and Friday, so it will be my first time venturing out with him! (Should be interesting)

I'm still getting in a rhythm too of all of his basic needs plus giving him meds (which he hates), checking his SATs a few times a day with our rented pulse ox, and eating and sleeping for me too! Thank goodness my mom (Grandma Harris) has been here to help us get settled. She leaves tomorrow morning early so it will just be me and Landon for a few days and then Gary's mom comes in this weekend for a week.

Today it's snowing here and it was really windy yesterday so I haven't even been able to take him on a walk yet! Hopefully the weather gets better before it gets worse (this is Colorado after all, it could be 75 tomorrow) so we can have some time outside!

As tiring as it is and will continue to be to have Landon's care 100% on us now that we're home, it is such a joy to have our son home! And just in time for his 1 month birthday yesterday!