A new normal

Landon has done really well since we got home a few days ago, especially considering that he had surgery just over a week ago.

His eating is off and on which is ok- we knew it would take him some time to get back to his old routine. He has moments of being smiley and happy every day which is encouraging - it helps is know he's not totally miserable all the time. There are, however, moments when he is totally miserable and those are not fun. He's still on pain meds (just over the counter stuff) round the clock for now and if we do a test and try to skip a dose of one of them to see how he does, we end up regretting it. So we'll just keep on those for now and hopefully we'll be able to cut back on them next week.

He had his first cardiologist visit (here in the Springs) since surgery today and Dr Brames said he is looking really good and doesn't seem to have any major concerns- although he did book us for 2 appointments next week. I guess we're back to seeing a doc or home nurse twice a week again for a little while.

Landon's heart rate is still low (in the 70s or 80s) but we should see this start to come back up over the next few weeks as his heart continues to heal. His sats have been pretty much where they should be which is good and it will just take at least a few more weeks for his body to get used to the new flow.

There are many challenging moments (including the pain meds and other meds, we are giving Landon 15 doses a day right now- pretty much all of those are challenging moments) but we are so grateful to be home where Landon can get good rest and be in a more familiar and relaxing environment.

Carseat Test #2!

Landon is in his car seat right now for the "challenge" they make him do before he can go home. He has to be in his car seat for an hour and a half hooked up to all his monitors and stuff to make sure none of his stats will go crazy from him being in the car seat. We did this in colorado springs too but when they transferred him it became a moot point. (Or a moo point, like a cow's opinion). He's doing well so far and sleeping so we hope he stays that way all the way through it! This is one of the many things we have to do before discharge. We're trying to do all of our video watching, pamphlet reading, etc to be ready for whenever they want to send us home!

We could go home as early as tomorrow, or it could be Monday, depending on what they think in the morning about his eating and weight change and if we can get the equipment we'll need to take home with us. He's eaten well so far today, 53ml and 42ml and they want him to be at least 40 so he's just got to maintain the pace! They are going to start fortifying his milk today so he gets more "bang for the buck" in his eating. It sounds like we'll go home with him on 3 meds that we'll have to give him by mouth through a syringe and a pulse oximeter which measures the oxygen saturation level in his blood. It's pretty cool, it just have to be strapped to his hand or foot, don't have to draw any blood. From what I understand we'll just have to take his sats daily, he won't have to be continuously hooked up to it like he is now.

That's all for now- everything else continues to look good- I think they are ordering an x-ray later today to check and make sure all his insides are doing well with the resumed feedings. If all continues to go like it is now we should be headed home soon!

Finished - Everything Went Well... So Far

Everything went well with the surgery. No major surprises. They had a little difficulty with the various IVs, but nothing out of the norm for such a small little guy. His SATs are doing well right now and we will go back and see him soon. There is no timetable on when he will wake up. It could be today or it could be tomorrow. Now the recovery process begins and hopefully no major complications come up as we go. These are pretty major surgeries, especially for such a small guy, and complications are not too far out of the norm.

All of the grandparents are here with us in the waiting room. Landon got to meet his grandparents (Gary's parents) 20 minutes before the surgery. They drove 19 hours from Michigan over the last day and a half and got here 20 minutes before the surgery and got to meet him! More to come later, but both momma and daddy are feeling some relief. It is going to be hard to see him all outta sorts, but we just want to see him now!

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

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.