A Full Dance Card

Landon had a busy day today! It started with a really nice feed followed by a lot of vomit. Yeah, not fun at 8am- for him or me (Allison). He is fine- he just got upset by the "bubble gum" flavored motrin I had to give him and worked himself into a frenzy. Why with all the medical advancements they can't make medicine taste like breastmilk for infants is beyond me. Obviously my 4 month old has no reason to prefer bubble gum flavor because he has no idea what bubble gum is. Anyway- all that aside- he got mad and threw up his meal and the med. Then we had to take him down for an xray which is also not fun. Hard table, cold room, restraining him with his arms above his head- he's not a fan. Then we got back upstairs and had to give him 5 meds (including the motrin he disposed of).

He had an echo, which luckily he slept through most of, and then he got his central line IV removed- great end result but not a fun process. All this was before 2pm and he finally conked out and took a 2 hour nap.

Overall he is still doing well and it still projected to go home tomorrow. His feeds took a dip today because of all the craziness and his blood pressure is still high (which he's on meds for) and his heart rate is still low. As far as I can tell they are still not worried about the low heart rate but it seems to still come up in rounds every day. We haven't heard how the echo came back yet but if that looks good then I'm sure the low heart rate won't be an issue for discharge.

Time to eat

Landon is doing really well so far.  It seems as though they are weening him off everything that was sustaining his high saturations.  He is receiving 1 liter of oxygen now, which is about a 1/3 of what he was receiving immediately following the surgery.

He ate well last night.  A total of 345 ml over 4 feeds.  Not quite his normal and the milk he was eating was not fortified, but still doing great.  He only has enough energy right now to eat and then he mostly just falls asleep. 

At the 4:30 a.m. feed he was just chilling before it.  Just looking around and didn't seem to be in much pain.  Good to see traces of our normal boy coming back so soon.  Today he is scheduled to get the rest of the tubes (drainage tubing) and catheter out.  I think most of the IVs will remain, but incredible progress considering last time.

Thanks for your continued support.  Great to see him acting like himself already.

Gary

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?

       

Gearing up for the real deal!

Landon is continuing to do well with eating. They have upped his amount a few times over the last 24 hours so he's now eating 24 ml every 3 hours (which still is not very much) and still eating it pretty quickly! We fed him a few hours ago and he didn't eat quite as fast but they still have him on the TPN & lipids by IV so when they cut that off later tonight, he will get much more hungry and hopefully rise to the occasion of having "all you can eat" feedings tomorrow!

If all continues to go well (his gut reacts well to the food we've been giving him and he doesn't have any other complications come up) we could go home this weekend! Like I said before, we're excited for the possibility but not holding our breath!

Breathing Tube is Out!

Making some progress today. Landon finally got the breathing tube out this morning. Mom is holding him as we speak. We will post pictures later. Overall he is doing much better but still has a very long way to go. Due to an inflammation in his stomach, which they are treating with antibiotics, they said he won't be bottle feeding for 7 more days! They are giving him lipids and other things through an IV to sustain him until that day comes, but it is going to be real hard to wait that long before I can feed our little guy.

Mom is much happier this morning. Holding him changes everything. We can finally hold him and comfort him some. Plus his cuteness went up again without that big clunky tube shoved down his throat. His right arm is like IV central. He has 3 IVs right now in his right arm.

Please continue to pray for his recovery process and that his saturations and breathing continues on an excellent course. Thanks for your support! Pictures will be posted later of momma and Landon.