Easter and Visitors

It's been several weeks since I posted! As always, we've had a lot going on but the last few weeks have been even busier than usual! The week after I had the stomach flu (my last post), Landon came down with a cold (which Gary and I got too, of course) which was later diagnosed as RSV. RSV usually just looks like a cold in adults and kids but in really young babies or other babies who are at high risk (Landon), it can become a serious problem. It was certainly not a fun time for any of us, but luckily Landon made it through without any trips to the hospital. (There were, however, multiple trips to the pediatrician since he wasn't getting better for several days). We put him back on his oxygen during the day for a few weeks to help him get through it- he had it for about 3 weeks. Now he's all better and back to normal pretty much- eating better again and everything. It was certainly a challenge when Gary had to be in Denver for 5 days during the women's final 4 weekend- Landon and I were both sick and pretty miserable.

We had started him on rice cereal a few times but when he was sick we didn't want to push this new thing. He's been back on it for about a week though and does ok with it. He doesn't love it but at least seems to not spit ALL of it out at least. I just gave him carrots for the first time today and it seemed to be a mixed reaction, so we'll see what he ends of liking the most. He's eating very small quantities of course, just getting using to swallowing stuff that's thicker than milk and eating from a spoon.

We got the go ahead from the cardiologist last week to let him sleep at night as long as he wanted to (basically not wake him up to eat if he is sleeping). This is so great because it means sleeping through the night is at the end of the tunnel! The last few nights he has gone 8 hours after his last feed of the day before waking up hungry! Other developments- he smiles more all the time, blows raspberries a lot, and jibber jabbers a good part of the day. He seems to love the sound of his voice, though isn't really saying consonants much yet. He loved to stick out his hand and let me kiss it- I always get a big smile from that. Still not rolling much from back to front- he gets like 80% there but won't flip himself all the way over. He has 2 teeth now but I think more must be ready to pop through soon because he is drooling a lot and chewing on stuff constantly! He loves to smile at mom and dad and watch the action as we move around the room.

Heartwise the cardiologist is very happy with where he is- his function, flow and oxygen saturations all look good. Hopefully at our next visit in about 3 weeks we'll be able to get rid of the oxygen completely and lower one of his meds. He's only on 3 at this point, but 2 of them are twice a day- fewer doses are always a wonderful thing!

This last weekend both of Gary's brothers and their families (including Landon's cousin, Abigail) came in town to visit and meet Landon. We hung out a lot at the house did a few things around town- it was a lot of fun to just spend time with them and celebrate Easter together. He's officially met all of the aunts and uncles (and cousin) now, but we've got much more extended family we're hoping he'll get to meet over the summer. We're so grateful that he is doing so well- his weight gain has been good (we don't even have to get weekly weight checks with home health anymore!) and he is so much better about eating now that a few of his teeth have popped through. He's a good kid and seems to be loving life. I'll try to post some recent pictures in the next few days.

On a different note, Gary and I received some tragic news recently. One of our former students from the youth group we volunteer with at our church died in a climbing accident last weekend. He was a well-loved young man who lived an active and full life and loved Jesus with all his heart. He was an example to so many of the students and leaders alike of what it meant to live a meaningful and adventurous life. I have been blown away by how his family has sought to glorify God in every step of this process and honor the memory of their son. They have strived to do things in a way that represents Ryan and points to Jesus, even if out of the "norm". His funeral was one of the most incredible times of worship I've been a part of in a long time and even though it was sad at times, it truly was a celebration of his life. Please pray for the Wahl family in the weeks and months ahead. I know it will be a difficult journey for them and that the joy of knowing he is in Heaven will sometimes be outweighed by the loss of Ryan's larger than life presence.

"Wean" on me

We've been busy the last few days! Landon has had a cardiologist appointment, a home health weekly weight check and a follow up appointment at the clinic in Denver between yesterday and today! He had his 4 month check up at the doctor's office last week (complete with shots ) - yes, we know he is 5 1/2 months old but he turned 4 months the week of surgery so we couldn't do his vaccinations then.

He is still gaining weight and growing pretty much on target (almost 15 lbs). He is still in the 10th percentile for height and weight for his age, but he's got a 50th percentile noggin! He is still pretty fussy (it's getting to be beyond "fussy" really) during feeds and starting to freak out when he's tired during the day too. We met with a dietitian today in Denver and based on what we talked about she wasn't really sure what the deal is. We're going to trying lowering the caloric density of his formula (from 26 kcals per ounce to 24) and she gave us a few different formulas to try if that doesn't work initially. We'll be starting him on solid foods soon but she wanted us to figure out what's going on first before we move on to that.

He also did some development testing today using the Bayley Scale. He did pretty well although despite my efforts to feed him at the right time so he'd be happy for it, he managed to only get a 30 minute nap on the way up there so he was pretty cranky by the time we started that. He's pretty on track in most areas and some of the areas he scored lower in could have also been do to him being angry.

As of yesterday we are weaning on the oxygen. So he has to be on it overnight and if he's napping in a separate room during the day but for the most part we can let him go without his oxygen while we're at home or if we're just out running around. We go back to the cardiologist in a month so hopefully at that point he'll tell us that we'll be off it completely.

Gary has been in Las Vegas this week for the Mountain West Conference Basketball Tournament so my parents have been here graciously helping me and enjoying their grandson! (when he's not screaming) We have been so blessed to have so much family be willing to travel to come see us and lend a helping hand! Well that's all I can think of for now- I will try to post some more pics soon!

Resting peacefully

Like Gary said Landon has been sleeping a lot, which is good. Hopefully it will help him recover quickly. He has been upset some when he wakes up, sometimes because he's hungry, sometimes he's in pain, sometimes it's a combination or we're not really sure which it is so we treat him like it's both. We were told he'd be more fussy after this surgery than the last one because since his body is getting used to the new flow, there will be more pressure in his head for a little while and it might give him headaches. He's on tylenol and basically a "strong ibuprofen" right now with the occasional morphine as needed.

In rounds this morning they said he will come down some on his oxygen (down to a 1/2 liter per minute, he was on 1/4 at home so almost back to "normal".) We'd be thrilled if he could come off of it completely before going home but we won't hold our breath on that. He will likely get his chest tubes out later today or tomorrow morning, at which point he'd probably be moved from the CICU to the CPCU (Cardiac progressive care unit) which is a step down unit.

When he wakes up and is hungry he gets upset pretty quick but usually calms down some once he eats. We haven't picked him up to hold him yet, not because we can't, but when he wakes up so hungry it's just not worth the extra time (and potential discomfort for him) it takes to get him out of his bed and into our arms with all the wires and stuff. I'm sure we'll hold him soon, but right now we're content to just sit him up on bed and let him eat and then go back to sleep. He got his catheter out this morning so that is one less thing that is uncomfortable.

One possibly concern is that his heart rate has been on the low side and has had times where it takes dips down into the 80s (normal heart rate for him is 110-160). Apparently this is not uncommon for after this surgery, but they did an EKG just a little while ago to make sure everything was ok and we haven't heard a result from that yet. We're glad he's just sleeping away most of the time and getting some good rest!

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

The Roller Coaster that is the NICU

Today went pretty well for the most part. Landon continued to eat good quantities, although we're still working on that breastfeeding thing. We'll get there, he's just determined to take baby steps for now, which is ok. As long as he's eating well, we're not picky about where the food is coming from. I (Allison) have continued to make progress in the pumping department (which is more than some of you may want to know) but it can feel like one step forward, two steps back at times. Again, baby steps, this seems to be a theme for now.

Landon's SATs (oxygen saturation levels) have been pretty good for the most part this week but had a significant desat on Wednesday, which is why the pediatric cardiologist wanted him staying until tomorrow. Most "normal" babies have SATs of 92-100, and Landon has been mostly in the 80s all week. The cardiologist said he is happy with 80s or even upper occasional uppers 70s as long as they aren't sustained.

After feeding him "dinner" tonight and leaving him sleeping like a rock, Gary, my mom and I went down to get some food for ourselves. By the time we got back, the nurse on duty, Becky, was kind of messing with him and he seemed fussy. She said that his SATs had been in the low 70s for a while during his sleep (when his SATs should be relatively stable) and even dropped down into the upper 50s at one point. She put him on some oxygen to help him maintain his SATs and that helped mostly but he even dropped into the 60s once on oxygen while sleeping. He clearly is agitated by the oxygen tubes (I think I would be agitated by tubes shoved up my nose too) and that doesn't help him sleep or his sats. His SATs are greatly affected by him being upset, etc so the tubes help by giving him oxyen but keep him from sleeping very well.

It was a little bit of a shock to Gary and I to see him on oxygen since he hasn't needed it all week and his SATs have been at good levels for the most part. Becky (the nurse) said that it meant we would have to take home an oxygen tank, but I think we're not banking on going home tomorrow at this point. It would be great and we would love it, but with some of he major desats he's had today, we'll have to wait and talk to the pediatric cardiologist tomorrow about everything.

Please pray that Landon will be able to get some good sleep through the night even with the oxygen tubes. When he doesn't sleep well, then he doesn't have the energy to eat and we start this whole cycle over again (the feeding quota and the threat of a feeding tube.) We've talked about one of us staying with him through the night tonight to make sure he's doing ok and to be here to comfort him but not sure what we'll do yet. It's not the easiest place to sleep with all the monitors and alarms and babies crying but we also want him to be comforted.