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?

       

It's Chow Time!

I didn't post anything yesterday because there wasn't much new to report. Gary went back to work Monday and Tuesday to get a few days in before Landon's feeding frenzy and Landon continued to be hungry and hard to console. He has progressively taken longer and longer to settle down over the last several days after getting worked up but we're hoping getting back to feeding will help!

He ate for the first time since before surgery (9 days ago!) this morning. They are keeping him on TPN & lipids (his IV nutrition) while he's eating small amounts to make sure his "gut" will tolerate the food ok. We fed him 9 ml this morning (basically the amount in the bottom of a drink that you and I don't bother finishing) and every 3 hours or so he'll continue to get that same amount. If he does well, they'll double that later this evening and continue to increase his amount if he does well over the next few days. As a point of reference, he had eaten up to 90 ml before surgery when he was actually eating so this amount is quite small. He seemed very happy to finally get something to eat and took well to it (not all babies take back to feeding right away after surgery) but he was obviously not full. So it will still be a long hard day because he won't be able to eat until he's satisfied, but at least now he knows that we're not going to starve him forever! Hopefully as we continue to feed him and increase the amounts he will get more and more comfortable!