Little Landon Might be Coming Home Today!

We are trying to keep our emotions tempered but we were told yesterday that he would come home today. Last night he had a brief dip in his SATs, but is still doing relatively well. Allison and I roomed-in last night at the hospital and took care of him all night for the first time without all the monitors and cords hooked up to him. They try to do this to prevent us from being terrified at home without a monitor and encourage us to focus on him and see if his color changes from the beautiful pink that all babies should be. The pediatric cardiologist is going to do another echo on him this morning to ensure that he can in fact go home. Also, they had his hearing test redone on his right ear and passed! False alarm there!

I got an hour of sleep, but the good thing is that I have been able to let Allison finally sleep some. The poor mommy has been worried sick about him and been burning the candle at both ends trying to produce enough food for him to provide him the antibodies that are so valuable that come from her food. It was great to have Landon around all night. I am getting the hang of this father thing for now, though when my body catches up to me due to the lack of sleep this will get tough.

We have at least 9 weeks to go. Please keep praying for him. These next nine weeks and beyond are critical for him to skip that first surgery.

I have felt very blessed by the nurses that have been around us. I have learned a few tricks just being around them over the past week and feel much more ready to keep this guy happy when his body is needing something. That is it for now.

I will leave you with one last thought. I was thinking last night what Landon would say if he could speak right now... it is decidedly so that he would say.... beat the Yankees!

Gary

Walenga Family Sleepover

(whoops, wrote this post earlier and forgot to post)

Today has been a pretty good day for everyone! I (Allison) had a long night last night since we didn't get home until about midnight and I'm still trying to pump every few hours. I called overnight to the nicu to see how he was doing and they said he had eaten about 3 oz! They was the most he had eaten by far so that was great to hear. They lowered the oxygen overnight and took him off of it at 6am to see how he'd do. His sats did good today, not in the 80s as they had been earlier in the week, but in the mid 70s or so which our ped cardio said it was good enough to let him go home. They wanted to keep him through today to make sure he'd continue to do ok without the oxygen but we should get to take him home tomorrow! Even if he does need any oxygen today, they would just send us home with a tank.

We are going to room in tonight, where they'll let us stay in a hospital room with him where he's not in the nicu or on any monitors. That way we can take care of him just the 2 of us but have access to a nurse if we need one. We're excited to finally stay with him overnight and in a little more of a normal setting with no monitors and such. It's pretty difficult to change his diaper when he has wires everywhere that we're trying not to pull off (not to mention the healing umbilical cord stump and circumcision)

So that's the plan! He's taking to breastfeeding little by little so hopefully over the next few days we'll have to supplement with formula less and less. Thanks so much for your prayers and encouragement! We are so excited at the thought that we'll be able to bring him home without surgery (for now)!

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.

Things are looking up

Today is already going a little better than yesterday. He's on a "feeding quota" of 150ml every 12 hours, which is usually over 4 feedings. Yesterday he came a little close to it but still passed and this morning he ate 75 ml in one feeding! He seems to be getting better little by little at breastfeeding but we're not there quite yet. He's getting a little bit of pumped milk but mostly formula for now.

Just wanted to post a quick update while I had a minute. 

Pray that he'll take to breastfeeding so we can have that down a little better before we take him home. Earliest he can come home is still tomorrow but no certainty that he'll come home then. We can't wait to take him home with us- it's hard to leave him at the hospital every night!

Wednesday's Update

Baby Landon did not come home today, but he continues to do pretty well.  He is eating well and passed a major test by eating enough to avoid a feeding tube.  Please pray that he continues to eat well.  The pediatric cardiologist evaluated Landon again today and was pleased with what he saw, but believed another 48 hours in the NICU was necessary to be more sure that he will do well on his own until the "second" surgery in the process can be performed.  We are definitely ok with him staying a little longer as it is reassuring that someone is watching his vitals 24/7.  The nursing staff has been excellent and very helpful.

Allison has been having trouble pumping.  The lactation consultants have been racking their brains to get her pumping well and small improvements have been made, but please pray for Allison that she can release the immense pressure and discomfort that she is experiencing.

Last, but not least, Baby Landon had a hearing test today.  His left ear passed the test, but they need to retest his right ear.  We are not sure what they saw yet that would require this, but please pray for his right ear and that any issues they saw will clear up quick.

A lot or prayer requests!  While it was a difficult day for us, we absolutely love being around this little guy.  He is a 10 on a scale of 10 for cuteness.  While mom has not been able to feed him yet, it has given dad a chance to bond with Landon a lot through his bottle feeding.  Landon will probably be hearing a lot about the Detroit Tigers and Hokies in the coming days from daddy!

Gary

A few more photos

Here are a few more photos of Landon that we've take over the last day or so. We think he's pretty much the cutest baby in the whole world.






































We also wanted to say a huge thanks to all of YOU. We have received so much support over the last few days (and months really!) through calls, texts, blog comments, facebook messages, emails and visits. We have been surrounded by an amazing community (local and long distance) and all of you have shown so much encouragement and faith! We cannot thank you enough for showing such love for all 3 of us and for your prayers and messages of encouragement.

Update #1: Things looking good so far

Hi all! It has been a wild ride so far, but things are looking good so far. The pediatric cardiologist gave us some positive news this morning. The pulmonary valve that needed to be at least 4-5 mm in width (was only 3-3.5 mm a month out and they weren't sure it was going to grow) was 6mm! 6mm is the normal size. Praise God for this small miracle! They are feeling good that he won't need the first surgery now. He is breathing on his own, though he has many instruments and tubes hooked up to him to monitor him. His SATs are in the normal range fairly consistently, which is fantastic because that means he is adequately oxygenating his blood throughout his body.

Mom is doing well and recovering beautifully. Please pray that baby Landon eats well over the next few days. There is potential for him to be discharged on Wednesday, but we are keeping our hopes tempered on that. An amazing ride so far, but THANK YOU to everyone who has prayed for him.

By the way, the pictures don't do him justice (while those are still cute). He is much cuter in person! I am still waiting to hold him for the first time. Allison has been holding him a lot today as they begin to get him to breastfeed. She is loving just holding the little cutie. That is it for now. More to come as we find out, but Wednesday could be a very pivotal day. Please continue to pray for him, but please also offer thanks for the prayers answered thus far.

Papa Gary