Sawing some zzzz's

This morning when I called to check on Davis, his oxygen was weaned down to 50%! I know that there is more weaning planned for later on today, so we are bracing ourselves. Davis doesn't like a lot of rapid changes, and while we know he'll be okay after some time, weaning lots of things at once has made things a little rocky in the past. 

And now for the real news: last night, I was hanging out with Davis, and I heard a kindof soft little grunting noise. I couldn't figure out where it was coming from, and then it hit me: it was Davis. Davis SNORES! All of you who know Michael are probably getting a big chuckle out of this right now... I sure did. 

Will update more this evening. Keep praying, we love you all.

Go Davis!

This is a (blurry) picture of Davis' new bed mate. Catherine and Karen brought Puff the Magic Dragon to watch over our little one. Puff was my favorite as a little girl, and so far the magic seems to be working.

Davis' x-rays continue to look better and better. His good lung looks GREAT, and the other is getting larger and stronger every day. In fact, it's starting to move the intestines out of the way as it inflates! The radiologist who read his x-ray from this morning hadn't seen Davis before, and he had to ask what was wrong with him. When Lakshmi told him Davis was CDH, the radiologist was surprised. He said it must be a mild case, just a small defect. Of course, that's not the case, but the fact that the radiologist had to ask blew us away. GO DAVIS! 

We've had an overall good day, with a few ups and downs on the vent & oxygen settings. They'll make some changes, Davis will react, and he'll end up compromising with the doctors somewhere in the middle. We keep moving forward in this way... and then back, and then forward again, and so on... we know that as they push Davis more and more, we can expect things to get a little rocky here and there. Still, as long as in the big picture we're moving forward, we are happy. 

It's amazing how strong Davis is, and he's not even a week old. A big part of it is all the people thinking about him and sending him love and prayers. Thank you :)

-Carolyn

Peach fuzz

Tonight was a good night! Nurse Jenny decided to give Davis a break from the earphones and eye mask, and we were SO EXCITED to see his sweet little face. He didn't open his eyes, but Jenny says they're a hazel color. Takes after his mama :)

Turns out his fancy BOSE noise canceling headphones didn't have batteries in them, so they weren't doing much of a job. Good thing Dad figured that out, because they're doing some construction tomorrow in the NICU and he'll need them. 

His blood pressure was doing so well that we got to touch him a bit! I got to rub his fuzzy little head, which completely made up for everything that happened earlier. It was amazing! His hair (there's a lot of it) feels just like peach fuzz. 

Who knows what tomorrow might bring, but Davis is stable tonight, which means we can rest easy. We'll take each positive moment and savor it for as long as we can. 

Isn't he just the cutest thing? 

-Carolyn

PS: I hope I didn't offend the other ecmo moms in my earlier post. We do appreciate hearing your experiences, especially your successes, and we get a lot of strength from that. Thanks for your words of encouragement :)

Seeing the forest

Nurse Lindsey gently kicked us out of the NICU a few hours ago. She's right, we need to get some rest, and Davis is in somewhat of a holding pattern right now, but I absolutely hate to leave. His epi (blood pressure medicine) and vent settings are slightly lower, but his oxygen did have to be bumped up 10 points or so this afternoon. Dr. Goldberg and Lakshmi feel that the episode Davis had last night might have been an isolated incident and not a trend. For tonight anyway, we hope to give the "e" word a rest. 

Lakshmi did make us feel a little better about ECMO. I know other mothers say not to worry, but the fact is that ECMO is a big deal with very real risks. We can't ignore that. On the other hand, as Lakshmi pointed out, they wouldn't use ECMO as a last ditch effort. They would only offer ECMO to Davis if they felt his heart and lungs would truly benefit from a brief rest. Davis isn't the typical ECMO baby, because so many of his numbers look so good. There are certain characteristics that babies who do well on ECMO share, and Davis fits that profile, which gives us hope. Lakshmi really thinks he will be ok, and we trust her and Dr. Goldberg infinitely. So, we're trying to get prepared in the event it ends up he does need a little rest. It's scary, there's no way around that, but we have so much faith in Davis and his ability to pull through this. Brad and Kellie are right- we need to count our blessings. Davis has made progress, has been relatively stable, and we are grateful for every single second we have with him. 

Catherine (my big sister) and Karen have been staying with us for the past few days. They have taken such good care of Michael and I. It is such a comfort and blessing to have them here. My sister is one of the best, most genuine people I know. Thank you, Catherine and Karen, for being here for us. We love you so much. 

We are so thankful for all the support and prayers. I think Davis feels it too. 

-Carolyn

through the night

I just called Nurse Jenny and Davis held steady through the night. After those few bad hours early in the night, he seemed to level off. They weaned a little bit more on the epi (blood pressure medicine) and his oxygen a very slight bit. He's still on the jet and did need two fluid boluses after we left last night (around 1 am) to keep his pressure up. She said he has gotten very swollen (I noticed the beginnings of that yesterday) and that's probably something they'll talk about in rounds, since it's an indication that something has changed. We are going in a little early today to make rounds, since it's such a critical time for our little man. 

Davis is still doing well considering what he's dealing with and there are lots of supports still available to him, even if some of them are scary to us. I felt in Jenny's voice that the "e" word might be around the corner. I hope not but of course we'll do whatever is in his best interest. We are so lucky to be at Duke, and trying so hard to continue to be positive. 

This is a lot to go through for Davis. He's only been in this world four days, though I know he is stronger than we even see. Please pray extra hard for Davis today. We love you all. 

-Carolyn

Two steps forward, One step back....

Well, Davis did not have the greatest evening that he could've had. He spent a lot of time tonight trying to ween off of his blood pressure medication and off of the jet ventilator and the oxygen, but no dice tonight. He did not do well after a while. I guess they will stay stable for a while, continue to check his blood gasses and try again. We are still proud of our little fighter, and although he is very sensitive to noise and movement and all, I believe soon that his blood pressure will level out soon. We are really scared of the possibility of going on ECMO. If he doesn't behave soon....

Medicine is such a strange practice. I am used to thinking that everything has it's own very defined rules and boundaries and laws. If a, then b and so on, but in medicine it is so different. It feels like the "rules" are not straight lines at all but very curvy ones. If a, then b or maybe c and it could even be d but we still don't want to rule out e as a factor (and so on)......  It is exhausting to see these minor adjustments all day. You really do lose sight of the progress he has already made and the goal and everything. Bad days are hard so I hope to tell you that tomorrow was a good one..

-Mike

The Plan:

So, today is also a really good day. Davis is doing great and the doctors think that it is time to try to ween him off of the jet vent and go to the traditional ventilator. They think they can do this because the "pressure" that the jet is on can be achieved by the regular ventilator so his chest will be moving in a normal up and down way instead of jiggling 420 times a minute. This is only a plan right now.... If he is able to come off of the jet then he can come off of the paralytic drug and he may be moving in his bed soon. He is also being weened off of his second blood pressure medicine, epinephrine. If he can achieve all of this smoothly he can go to surgery. We are still looking at a long road but at least we can see it now.........

Thank you all so very much for your comments and prayers. We love and miss our friends and family and can't wait to bring our son home to heal.

-Mike

P.S. this is a photo of Davis' little corner of his room. It is like a jungle of healing.