One Month Post Op

It's been a month since Landon's surgery (it's hard to believe) and he is still recovering well. He is down to 6 doses of meds a day from the previous 15 and is completely off painkillers- he has been for a few weeks now. It is a huge relief to just have to give him meds a few times a day as opposed to every few hours. His chin is also much cleaner these days - constant doses of tylenol and advil make his face to sticky! (considering at least a lit bit of the dose always gets spit out).

He is weighing in at over 14 pounds now - although the last few weeks he hasn't been gaining weight as quickly as he should be. He has been having a hard time eating and we haven't yet figured out why. We don't think it's related to the surgery - he doesn't get tired or anything, he's just usually really fussy during the entire feed but when we put him down and stop trying to feed him he settles down really quickly. So it seems like he's not in pain or anything, just maybe frustrated and doesn't like eating. We have just switched the formula we fortify his food with again to see if it is something tummy or taste related, so we'll see. We've resorted to getting him up from his naps and going straight for the bottle so he's not totally awake yet and he seems to do much better with that since he's not as aware that he's eating (that sounds terrible, I know but he usually eats much better). We're hoping that this is a phase or something that he will grow out of once he's on solid foods, which we haven't tried at all yet.

He is still on oxygen, which he has gotten a little more used to but still pulls out sometimes when he's tired or frustrated. Our next cardiologist appointment is in a week and a half and they will do some testing on him to make sure he'll tolerate being off of oxygen and then we'll hopefully start to wean him. Mostly likely we'd start with taking him off of it during the day but keeping it on at night before he gets rid of it completely. We will be glad to be rid of it! It makes going out anywhere a little more difficult - although we do have a little shoulder bag we can take with a small tank so he's still portable enough. Someone at church told me that they had twins and one was on oxygen so they called the oxygen their "triplet" so I guess that makes Landon's oxygen our "twin".

He's 5 months old now (!) and doing new things all the time. He is pretty vocal and likes to hear his voice and has recently started smacking his lips and saying a "B" sound. He tries all the time to roll over from his back to his front but so far has only made it onto his side. He is laughing more and more these days and smiling a lot. He sits up in his Bumbo for about 10 minutes at a time and we've just recently started reading him books. Just last night I was reading to him from his little Bible and he starting flipping the cover of the book open and closed and turning one of the pages back and forth. It's always a delight to see him discover new things - over the past week he has finally started sleeping unswaddled and it's funny to see how he likes to sleep with his arms straight out to his sides just like he's singing "I Believe I can Fly"

We were fortunate to have both of our parents come out either for the surgery or soon after and spend some time with us and Landon and help out around the house. I (Allison) just went back to work on my normal schedule last week and Landon went back to daycare for the first time in a month. He seems to do well there and enjoys the company of Thad (4) and Oliver (8 months). We are so fortunate that Mindy who watches him knows what it's like to have a "heart kid" and is comfortable with him being on oxygen while he's there.

Sorry for the lack of updates! We appreciate so many people who continue to check the blog to see how Landon is doing and who continue to pray for him!

Landon Lately

Here are some pics of Landon from the hospital and since he got home.

Starting at upper left and moving clockwise

* Landon playing with "Papa" Harris in the hospital

* Rocking his new pilot outfit

* With Grandma and Grandpa Walenga

* Landon's Valentine's Day outfit (it says "Little Casanova")

* Landon reading the Valentine he got from Mommy and Daddy

* Playing in his activity gym

* Posing with his valentine

* Staring at his mobile that we brought to the hospital (and BOY are we glad we did!)

* Landon playing with "Mimi" Harris in the hospital (2 days after surgery and he's already smiling!)

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.