What a day!

After this morning's ECMO scare, Davis showed some improvement in his blood gases and his hypertension is stabilizing with the epinephrine. He also had an echo that came back the same as yesterday's, meaning his heart is still functioning at the level it needs to, so we've dodged the ECMO bullet for now. It's still on the table, and while it scares the hell out of us, we're also glad that it's there if we need it. It's nice to have a backup, even if that backup is scary.

The best news is that today's x-rays showed some progress on lung growth! I don't know a lot about x-rays, but it looked like really significant growth... you could definitely see huge improvement from the time he was born. The stomach and intestines, which were both in his chest, had a lot of air in them that they've removed. This has given some room for the lungs to grow. There might even be a possibility that one or both the stomach and intestines (now smaller) could drop out of the chest entirely. Seeing the x-rays tonight was really encouraging. We're so proud of our sweet little son, how hard he's fighting, and the progress he's making. We are so happy to be his parents and enjoy just being by his side. 

We are definitely learning to live only in this moment. Things change so quickly (as today has shown us), and Davis is showing us that he is the one calling the shots. As of now, we're moving in the right direction. 

Thanks for your prayers, we need them!

-Mom

Welcome to the Rollercoaster

That is what we were told this morning. Sometime through the night while we were sleeping, davis started to have problems. His blood gases weren't looking like they should, so they decided to administer a third drug for his blood pressure (that's right, we've had three) and that wasn't having the desired outcome so we are ready for ECMO. That is the scary heart lung bypass machine that we didn't want initially but if that is what he needs then of course we will consent.

We were told this morning he is going on ECMO, so we called down to his nurse and asked if we could be with him before he had the surgery for the machine but she said that they were rethinking it. Five minutes after they left our room, they were rethinking it. That shows you what we are in for with CDH. One minute verses the next.

We went to visit him this morning after speaking with his nurse and he was doing great. His numbers where right where they needed to be (except for his lactate acid number that was creeping up through the night) and we will know more about his numbers in a little while.

As of now, no ECMO and he is doing okay. Fight boy.......

-Mike

P.S. this is an early picture. He is still on minimal stimulation but we saw him without his eye mask today.

Minimal Stimulation

Here you can see that Davis is not supposed to have much interaction with the outside world right now. He is kind of sleeping and he is in his own little bubble. The more uninterrupted time he has on the ventilator the better he will be. We are just enjoying our time being along side of him and meeting all of the incredible staff that stays by his side at all hours. 

This next little picture is of Davis' buddy who is looking out for him.  Papaw would want it to be more of the Wolfpack color, and "uncle Gino" doesn't really want the Blue Devil Pride to be involved here, he is more of a Tarheel but Davis has obviously become a huge Duke fan..... this little buddy came from Brad and Kellie (bradandkellie.blogspot.com) today as they came up to see us and check on Davis. We are very excited for them because they are finally taking their son home.

 Thank you all for your kind words and prayers. We should be checking Carolyn out of here Sunday morning so we can sleep in a real bed again and hopefully start a visiting and learning routine with our son. Check back soon.......

-Mike

Hello World!!

This morning at 1:05 am Davis Michael Ashworth was born at Duke University Hospitals. It was a long process with very few contractions and finally the doctors decided to perform a cesarean. We heard five little cries (which is a good sign) and then the massive team that was on hand whisked him away to the room next door to stabilize him. He was immediately intubated and in a few hours the team in the NICU allowed me (dad) to go and visit with him. This is when the docs and nurses explained that he was doing great!!! He is now on what they refer to as minimal stimulation. He has a little sleep mask on and he has some Bose noise canceling headphones on as well. The team has Davis on a paralytic to keep his movement down to a minimum so he doesn't try to out breathe the machine the is gently inflating his lung. I know, this sounds like a lot but this is what we have been preparing for. This situation has to be taken day by day but today was a VERY good day. Davis is doing "remarkably well" and we are very proud of our little man. More to come soon after hours of sleep and healing for mommy.

Here We Go....

Okay, it seems like Davis takes after his mommy and not me, he wants to be early. So this morning (6 a.m.) we arrived at Duke hospital because Davis is on his way! So far we've only been here nine hours. Some family are on their way and lots of you have already been in touch. Thank you all for your prayers and support. more soon.

-Mike

Daddy's nose

We had our last doctor's appointment today before February 2, when Davis will be induced. The ultrasound technician played around with the 3D feature a little- it doesn't work as well now that he is getting bigger, but I think you can see that he's got his daddy's nose. 

Looks like he'll be about 6 1/2 pounds, but that measurement is based partly on the size of his abdomen. Since some of his abdominal contents are in his chest, there's a good chance that number is artificially smaller and not entirely 

accurate. 

We've had a lot of questions about what will happen when Davis is born. His biggest obstacle is lung function- since some of his abdominal contents (mostly intestines) are in his chest, they've kept his lungs from growing fully. He'll be intubated immediately, and he'll probably need either a conventional or high frequency ventilator. From there, he will most likely be dealing with pulmonary hypertension. The way we understand it, his veins and arteries are normally sized, which can constrict his underdeveloped lungs.  If nitric oxide and the ventilator don't help the hypertension issue, there's a possibility that he may need ECMO, which is a heart/lung bypass. We really want to avoid that, so that's all I'll say about it here. After the hypertension is under control to a reasonable extent, then we can begin talking about his repair surgery to fix the hole in his diaphragm and move misplaced organs. Then we work on feeding and growing... but that's a ways down the road. 

Speaking of feeding and growing, there's been cause for celebration in Parker's house! Our housemates, Brad and Kellie, have been working on their son Carter's feeds for quite a while now. It's been the only thing keeping him at Duke for weeks, and it looks like he's finally got it. He may be on his way home soon, and with no additional surgery for a g-tube! We are so excited for them!!! If you want to learn a bit more about the CDH journey and see the cutest little boy ever (well, until next week anyway), check out their blog: www.bradandkellie.blogspot.com. 

Clearly, we have too much time on our hands...

So, you know the poster of Obama that's everywhere nowadays? There's a website where you can make your own: www.obamiconme.com. We decided to make one for Jake. Note: Michael's suggestion for the caption, "Chase we can believe in", wouldn't fit in the allotted space. Yeah, we've got some time to kill...

Winter at Parker's House

See this beautiful snow? This is the view from the porch at Parker's house. We got a few inches yesterday, and some of it stuck around today, too. Being that we live in the mountains, it's sort of funny that we have to come to the Piedmont to see the white stuff. So pretty! 

New Home

We moved in to the Parker-Reese house tonight (www.theparkerreesefoundation.com). Brad & Kellie (another family living here) and Jes & Ashley, who began the foundation, were here to greet us. It is very peaceful and quiet out here in the country. The house is great, thoughtfully decorated with photos of CDH babies and little reminders to be hopeful. 

We can't imagine how much harder this experience would be if we didn't have the Parker-Reese house to call home for this next phase of the journey. We are still blown away by our good fortune in finding this place. It was hard to leave home, and nothing about dealing with CDH is ideal, but in so many ways we are still lucky. 

Stomach is up

At our ultrasound today (the last one we'll have in Asheville), we saw that Davis' stomach has now moved into his chest. It can still move back below the diaphragm (I guess it's a slippery little thing), but, after weeks of stability and "no news is good news", it was hard to hear that. Prior to this, it looked as if the intestines were the only organs herniated. That's unusual for a CDH baby; they can and frequently do have the liver, spleen, and/or stomach in the chest cavity, and the fact that this wasn't our son's situation made us think that maybe Davis didn't have that severe of a case and he might have a better shot than most. 

My logical mind knows that this isn't really true, and that CDH is an unpredictable disease. Babies that have less than favorable stats can do very well, and those who have what appear to be more severe cases can do poorly. There's just no way to tell. Still, I wish that stomach would have stayed down. 

Moving day is four days away...

Birthday

I love this picture of Davis' little nose and lips, as if he were pressing his face up to a window.

It's been a busy time as we try to get ready for next week's move to the Parker-Reese house. Michael's last day of work is this week, mine is next week, and there's still a lot to do before then. Despite all that's ahead, I'm grateful for the time to come. This pause in the hustle and bustle of our normal lives, apart from our home, jobs, friends, and ordinary lives, gives us the chance to focus only on our little family. I do wish the circumstances were different, but I am thankful to have the time to just give to Davis and Michael. 

Looks like our little one's birthday will be February 3. I'll be induced on February 2 @ 8 pm... not far away at all! Sometimes I feel ready, sometimes I freak a little about the unknown. I just keep telling myself that he'll be ok, he'll survive, and when he's older, he'll remember none of this. It'll be something we tell him about- just a little hiccup in a long, healthy, happy life.