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.

He's Heating up, He's on fire!

Landon has done fantastic over about the last 18 hours. He has slept very well, continued to wake up on his own to feed (not quite every 3 hours like they want, but getting closer!) and is taking increasingly larger quantities. For the last few days now he has looked much more comfortable while feeding and isn't showing signs of pain which we think means the acid reflux meds are finally working well. Hopefully before we leave the hospital he'll be down to one of those, but one step at a time!

It is such a relief to see him actually look content while he eats and to know that he's finally starting to get closer to consuming the amount of calories he needs! Thank you so much for your prayers- God has been so good through this whole process. We know that He is control, even in situations that may be difficult, and it has been amazing to see Him provide encouragement for us just when we needed it. On Tuesday I told Gary when he got to the hospital after work that I didn't think I could do another day like that. It was just so hectic with nonstop hospital staff coming to see me for a million different reasons and with phone calls to set up things like home health care, etc. And that was all on top of the fact that he was seeming to be in pain and eating terribly with no signs of improvement- not to mention me being exhausted in so many ways. Then yesterday was just a totally different day- things were a lot calmer with visitors coming to do "business" and he started to show an interest in eating again. And as little sleep as I've gotten, I felt so refreshed in knowing that things were starting to change for the better.

Knowing from the beginning that this would be a tough journey, I feel like we have tried to take very little for granted, but after the last few weeks I am SO happy to see him eating well and improving almost hourly. No exact word on when he will go home- he's still got to prove himself for a little bit longer with his quantities and his weight gain, but we're hoping it will be very soon and that it will be without an NG tube (feeding tube)!

Feeding Tube

Landon continued to not eat too well overnight, even with feeding every 2 hours instead of 3. He seems to hit a wall after eating pretty well for a few minutes and then seems to be uncomfortable or in pain and just won't take anymore. We've stayed overnight the last few nights to try and help with feedings so it's been good to be so close by but hard to see him get upset at pretty much every feeding. They've added another acid reflux med and tylenol to his med schedule (so he's up to 5 now) so we're hoping that once these have some time in his system they will help with any discomfort from acid reflux and residual pain from surgery and all his incisions and such.

It sounds so trite, but the poor guy gets hiccups constantly it seems, especially when he is mad and then the hiccups just make him more angry. I guess frequent hiccups are common for infants but it's so sad to watch because they shake his whole body and probably hurt more because of his surgical incision.

This morning they decided to put a feeding tube in that feeds through his nose and straight down to his stomach. That way even if he gets tired during a feeding he can still get the nutrition and calories he needs. They have upped his fortification so he doesn't have to take as much quantity to get a good calorie intake. They'll continue to let him eat every 2-3 hours and then supplement what he eats through the feeding tube, likely during the night hours so he can basically sleep through his feedings and get some good rest but still get the food he needs.

The tube was just put in a little while ago and he hated that process- it's so hard to watch your infant be in pain or frustration and not be able to do anything to help. Luckily he usually calms a little bit when he is held, so that is one "go to" that we have but no other comfort measures are guaranteed. He does like his pacifier quite a bit, so we've thrown the "no pacifier for the first month" rule out the window (we didn't have much choice since he got it in the NICU on day 1) and just let him have whatever soothing methods he can.

They've said that it's possible they would send us home on the feeding tube, but I get the impression that they'll keep him here for a few days and watch his eating and his weight gain (he hasn't gained anything in the last few days). We're still not sure how the feeding tube will affect his apparent acid reflux, but hopefully as those meds start to kick in more it won't be as much of an issue. I imagine we won't go home before Tuesday, but no official confirmation on that.

Please pray for Landon's comfort with the feeding tube now that he hasn't had any tubes for a while and that it won't deter him eating on his own. Also for patience and strength for Mom and Dad since we are starting to get worn down from having to see him in so much pain and discomfort and just wanting to take our son home!

Not Quite Yet

Well after Landon started out feeding really well yesterday he kind of took a downturn and started not eating as well later in the day. He's continued to have a really hard time settling down to sleep at times and then he doesn't get as long of a nap as he should which gives him less energy to eat later. It's a vicious cycle!

It sounds his slowdown in eating could be a combination of him just tiring quickly during feeding (which is common for heart defect babies) and possibly some acid reflux (also common for babies in general). So they want to keep him a few more days to see how he continues to eat and see him gain some weight. We may have to try and feed him small amounts more frequently but his sleeping patterns make it difficult to move his feedings closer together. We're just having to learn what schedule will work best for him and adapt to it. During the later part of yesterday we realized we probably would not be heading home today so we were prepared for it, but we are still eager to take him home soon! Hopefully it will be Monday if we can get him back on track with eating over the weekend. Thanks for your continued prayers!