Davis Michael Ashworth

Home and Happy

2009-08-13T21:21:00.002-04:00

Davis came home yesterday evening and seems to be on the upswing. His fever is gone, his fontanelle is back to normal, and he can tolerate some formula. He's lost weight and still isn't eating nearly enough, but we feel like he's on the mend and going to be a-okay. He's back to his smiley-little self... after these last few days, it's nice to see.

Visiting the healing hotel

2009-08-12T01:00:00.003-04:00

Just a quick update... it's about 1 am on Tuesday night, and we're in the hospital. Davis wasn't feeling well today - vomiting, no appetite, coughing, fever - so we took him to the doctor around 4ish. We called our pediatrician later because he couldn't eat at all, and because his fontanelle (the soft spot on his head) was swollen and hard. He's on tamiflu and tylenol. We think this is just a precaution and will be nothing, but given his history we don't want to take any chances. Will update as soon as we know something...

Rice cereal, sitting up, & exersaucer!

2009-07-27T22:10:00.001-04:00

First Day at the Pool

2009-07-05T21:39:00.000-04:00

Busy Weekend!

2009-06-28T18:40:00.002-04:00

Davis with cousin Katie and Uncle John

Family Photo outside Duke

Davis in the ICN Waiting Room...

Jes with Katie and Carter at the PRF Reunion

4 Miracle Babies and 1 Amazing Couple

This has been one busy weekend! We drove to Raleigh for the Parker Reese Foundation reunion. We are so glad we went. It was amazing to see all the little miracle babies hanging out together, and even better to see the look on Jes' face when they were all in her lap. Parker's legacy is so evident in the lives of Davis, Bodee, Katie, Carter, and so many others.

Then, we made a stop by the Duke ICN to say a quick hello to Davis' nurses. We missed the Duke reunion so we knew we were in big trouble unless we brought Davis by for a visit. He got to say hi to Carolyn, Shanda, Lindsay, Heather, April, and a few others... we didn't get to see everybody, but we'll be back soon.

Lastly, we stopped by to stay the night with the Trefneys. Little Elizabeth and Katie (his cousins) were so excited to see him. They were so sweet, holding Davis and petting his head.

Now we are home sweet home and miss everyone already... but are so exhausted, we will surely sleep well tonight (as long as Davis does, that is)...

We Love Daddy

2009-06-21T13:12:00.002-04:00

Happy first Father's day, Michael. You have been an amazing father since the day I told you we were going to be parents. You are the heart and soul of our family and we love you so much!

Tummy time isn't so bad...

2009-06-14T15:32:00.001-04:00

Davis is out and about....

2009-06-03T13:38:00.003-04:00

Aside from the many trips to both grandmother's houses we have only recently decided to take Davis out into the big world! His debut was the White Squirrel Festival here in Brevard, NC on Memorial day weekend. It was a great festival and Davis was out for about an hour and a half. Brevard is such a small town that Davis ran into his pediatrician on the street. Dr. Wells was really glad to see Davis tolerating the outing so well. He did not cry once around all of the loud music and all of the people. He seemed to enjoy it. It was a real treat to look out from the stage and see my son and beautiful wife there. It was his first show!

We are currently trying to cram a follow-up visit down to Duke into our schedules. From here, it is easily a five hour drive! Hopefully we can get "clinic" on one day and follow up with the surgery team the next day. Our last clinic visit took well over seven hours and we drove home that night..... This time we will space it out over several days.

Davis is eating remarkably well. He will eat four ounces in one sitting over fifteen minutes! I remember starting with 10cc's and that was a task. He is still on Omeprazole (Prilosec) and it is hard to find a pharmacy here that will compound the medication so Davis can drink it. We found a pharmacy an hour from home that can do it. He recently had to have the dosage adjusted for weight gain. Dr. Wells said that reflux could become worse for Davis between 4-6 months of age, which is now. He rarely pukes, but we can tell he does reflux. It is painful to him. Hopefully the meds keep it under control.

Sorry for being blog slackers!!! We are working on it. Hopefully these pics will make up for it.

-Mike

P.S. Davis is learning to speak his own language, knows how to play Mommy and Daddy by fake crying, puts everything in his mouth, and is generally being cute all of the time.

Big Smiles

2009-05-09T12:30:00.001-04:00

Because of Parker...

2009-05-07T19:32:00.002-04:00

Three years ago today, Parker Reese Singletary was born. She lived only one day, but her life has made an incredible impact on our family. We firmly believe that Parker saved our son's life.

Because of Parker, Jes (Parker's mother) felt inspired to form the Parker-Reese Foundation. We met Jes before Davis was born, and she convinced us to at least tour Duke, just to see what they had to offer. On Jes' recommendation we did just that, and fell in love with the team there immediately. We knew they were the doctors who could give Davis the best chance at life.

If it hadn't been for Jes, we would never have looked into Duke.

If it hadn't been for Duke, Davis would not be alive today.

If it hadn't been for Parker, none of this would have happened.

Thank you, Parker. We never met you but we love you.

This kid is awesome!

2009-05-06T18:17:00.002-04:00

Davis continues to make amazing improvements at home. Pushing for an early discharge was absolutely the right thing for us to do. When we first took Davis home, we would sometimes struggle to get him to take even 5 cc's from a bottle. Yesterday, in about 15 minutes, he ate 3.5 ounces (that's over 100 ml's) and was hungry for more!!!

He's growing and progressing so fast. Davis is our first baby so I am completely astounded at how quickly he is changing. He is talking to us a lot more - cute baby babble- and smiling like crazy. He has learned how to hold a toy for a longer period of time. Everything he grasps now goes straight into his mouth. He needs a lot of stimulation, and loves to hang out on the porch and listen to the birds chirp. He is just the coolest kid ever.

Parker Reese Foundation Needs You!

2009-05-03T14:59:00.002-04:00

I think many of you know of the Parker Reese Foundation. They provide a beautiful, peaceful home for CDH families traveling to Duke for medical care, and they ask absolutely nothing in return. They are amazing.

The financial burden of CDH is something people don't often discuss, but it is very real. Our medical bills are... well, let's not even go there! There is so much stress in fighting the CDH battle. As if knowing your child may not make it isn't enough, families often have to move far from their homes, families, etc... in our case, we moved 4 hours away to get the best possible care for Davis. It was tough. Lucky for us, we never had to think about where we would stay or how we would pay for it. Parker Reese Foundation took care of everything for us.

The Parker Reese house is on a peaceful old dairy farm about 15 minutes from the hospital. It is so serene and quiet there. They allowed our families to stay there, too, which made a huge difference for us! It became our second home. I cannot say enough good things about Parker Reese Foundation.

Now, they need your help. For just $16, you can sponsor a family staying at Parker Reese House for one night, and you get a t-shirt! If you can give more please do. Email info@theparkerreesefoundation.com to help babies like Davis and their parents. Please help! I don't know what we would have done without these guys. Thanks everybody :)

"freakin' awesome"

2009-05-02T22:33:00.003-04:00

Just a quick update on Davis' cardiology visit yesterday. Dr. McGovern said (and I quote) that Davis was "freakin' awesome." He was so impressed with his progress and not concerned about anything at all. We'll still go back in a couple of months to be extra careful, but we are so happy that our little man got such a fantastic report card! Go Davis!

Water Baby

2009-04-30T21:37:00.002-04:00

Davis loves baths, and usually he takes one in his whale bath tub that Kristen & Noland got him. If we have a lot of time, we'll float him around in our big kitchen sink instead. He loves the water and is so sweet kicking and splashing around.

Tomorrow is Davis' cardiology appointment. I think everything will be just fine but, given everything he's been through, I will admit I'm a little nervous. Keep your fingers crossed that he passes all the tests with flying colors.

I'm writing an article about our experience with CDH. It's my little way of hopefully raising awareness about this condition that robs so many families of their children. I'll post it here when I'm finished for feedback.

sad day

2009-04-21T18:20:00.003-04:00

Today I learned that Baby Kaden has died. Hearing that another baby is gone, I just feel such despair. Life is so fragile, so precious. We are amazingly grateful that Davis has done so well. But it seems like almost all the babies that have been born since have not been as fortunate. Baby Joseph, Maxton, Addison, Kaden... all of these sweet little souls are gone, and their parents are left with broken hearts and empty cradles. It doesn't seem like the survival rate is even 50%; it seems so much less. I hope we live to see the mystery of CDH solved. Even one more family having to go through this nightmare is too many. We will be holding Davis extra close tonight.

Quick Davis Update

2009-04-19T21:16:00.003-04:00

Picking Azaleas with Daddy

Davis Loves Being Outside

Davis Meets Jake the Dog... he wasn't impressed

Just a quick post... Davis has had a little bit of a runny nose and a tiny cough. We're trying not to freak out too much and just watching it very carefully. For most kids, a little cold would be nothing. For CDH babies, it can be a very big deal. Hopefully Davis will kick it in no time. If it gets any worse we'll give Dr. Wells a call.

Little Jaime Trost decided he wanted to be born early! His blog is here if you want to stop in and show them some support. Baby Kaden continues to hold his own... we pray for him and Baby Jaime every day. Both Kaden and Jaime's mothers checked in with Davis the whole time he was in the hospital. They are great moms and we know their little ones will be just fine.

Little darlin'

2009-04-13T20:28:00.003-04:00

Looking a little scared but you can see his scar healing...

With Uncle Jordan...

Thinking about Smiling for Daddy

Davis continues to be the joy of our lives. He still eats 100% from a bottle (take that NG tube!) and still needs prilosec for reflux. We discontinued the nebulizer because it caused a nasty case of thrush that he's still recovering from. The thrush made him averse to eating, so it seemed like the bad outweighed the good with the nebulizer. He's been smiling a lot more and has started to coo a little. I think he gets cuter every day...

We have an appointment with the pediatric cardiologist next week to check on a few minor heart issues. Because his heart was compressed for so long, one side is somewhat stronger than the other, which I guess could be a problem if it doesn't improve over time. We hope and expect that it will.

Please pray for the Kuehl family. Their son Kaden is a CDH baby fighting for his life as I type this. I do have some happy news! I meant to post this a while ago, but Davis' NICU roommate Nicholas is at home and doing well with his parents. He went home with a lot of equipment and monitors, but we bet that, like Davis, he'll make rapid progress now that he's home sweet home.

Swing = Love

2009-04-06T22:17:00.003-04:00

Davis had a baby shower on Saturday. It was so nice- I can't even describe the amazing amount of baby gear and sweet little clothes Davis ended up with. I have to post a picture of the cake, which was so incredibly cool! He got lots of great stuff, but there are a couple things in particular that he absolutely LOVED- especially his new swing. I never imagined a baby could like anything so much.

The swing has been particularly convenient in that Davis has been miserable with a nasty case of thrush these last few days. We think the thrush came from using the nebulizer for breathing treatments. Dr. Wells prescribed some new medications for the thrush, so we hope it clears up in the next couple of days. Last night, he cried more than I've ever heard him cry... thrush stinks.

"Perfect"

2009-04-02T20:14:00.004-04:00

Crashed out on Daddy...

Being a Rock Star is so Tiring...

This is my big sister Catherine, Davis' aunt. She came to visit earlier this week and, while she could only stay a little while, we were so glad to see her. She is beyond amazing and we love her so much. I wish Davis could grow up closer to her so he could just absorb all the love that she just radiates. We miss her already :)

Davis had his first follow up appointment at Duke this week. We drove down after work on Monday and stayed at Parker's House for his Tuesday appointment, which lasted for SEVEN HOURS. That's right, SEVEN HOURS! It was nice to see everyone but we were pretty frazzled by the end of the day, and then we had to drive the five hours home. We had hoped to be able to stop by and see our nurses, but Davis was so hungry and upset we had to wait until next time. We hope to plan several days for these travels in the future as it is just a lot for little Davis to deal with. It was so strange to go back to the hospital and walk through the NICU doors, except this time we had Davis with us.

Besides a little anemia and some mildly decreased pulmonary function, things are looking "perfect" according to Dr. Benjamin. When she said perfect, I had to ask her to repeat it... it just sounded so nice! We've started Davis on a nebulizer w/ albuterol and pulmocort to try and help those airways expand a bit, and he's on another iron supplement for the anemia. We are now feeding him at will rather than a strict 3 hour schedule schedule... so far, so good.

Amazing Day

2009-03-28T21:44:00.003-04:00

This morning, I woke up and made some coffee. Michael was helping a friend with some carpentry stuff, about an hour away from home. I was on the couch when I noticed the coffee maker was in the process of exploding all over the counter. I thought to myself today is going to be one of those days...

I was cleaning up the coffee mess when I heard Davis screaming in his crib. It was a cry I hadn't heard before, which scared me. I ran into the room and found him holding his NG tube- the part that's supposed to be in his stomach- above his head, and he was just wailing. He'd pulled it out on his own, and I freaked a little.

Davis was set to eat in about five minutes, and sometimes we need to put as much as half his feed through the tube. I didn't want to put the tube back in without Michael's help, so I decided to just try the bottle and see what would happen. Well, he took THE WHOLE THING, and he proceeded to do that (without the tube) the next FIVE FEEDS!!! If you've ever dealt with the whole CDH/feeding thing, you will understand when I say that next to my wedding day and the day Davis was born, this was quite possibly one of the happiest day of my life. Of course, we may have to put the tube back in if he doesn't take a full feed, but just to know that he can do this is wonderful. It makes us feel that the discussion about another surgery for a g-tube is that much further away.

The one drawback to not having the NG tube is administering medications. We can't just "tube it", we have to give it to him by mouth, which he isn't too fond of. Anyone have any suggestions for a good way to do that?

Mommy Paparazzi

2009-03-27T09:46:00.003-04:00

Davis' cousin

2009-03-26T22:32:00.002-04:00

Everyone whisper some prayers for Brycen. Brycen is Davis' cousin and he just had his 4th birthday. He was diagnosed at about three months old with a rare brain disorder called lissencephaly. He is currently over at Mission struggling with some respiratory issues. You can visit his blog by clicking here. He and his mommy would love to hear from you.

Davis is doing well. He is starting to smile some, but only at times when we don't have the camera and it only lasts for a sec. He rarely pukes, and usually does pretty good with feeding. He can eat about 80% of his total feed consistently and sometimes he finishes the whole feed! We love our little buddy. We will repost with many new pics soon.

Mike.

P.S. We had to replace the NG tube last night. It is not a pleasant thing. Poor thing was crying SO HARD.

Eating is Hard Work!

2009-03-23T18:18:00.002-04:00

Davis is doing so much better with the bottle. He can usually get around 50-65 cc's down before he poops out. His feeds have been bumped up to 80 cc's every 3 hours, so we still have some use for the feeding pump. We hope that as his stomach grows we'll use the pump less and less, and eventually be able to get rid of the feeding tube entirely. He's dangerously close to being able to pull it out on his own. His pediatrician reminded us that eating is the hardest work Davis has to do, something akin to running a marathon for us. If only eating were that way for me. I'd be an Olympian :)

I am constantly thinking of how lucky we are to have Davis. Reading his medical history, which they gave us when we were discharged, I am reminded of the enormous debt of gratitude we owe everyone at Duke. Their care, as well as Davis' amazing will to live, was the deciding factor in his survival. It could so easily have gone a different direction.

My heart breaks as I report that after just under 3 weeks on this earth, Baby Maxton has chosen wings over feet. Directly after I learned of Maxton's passing, I went in the bedroom to be with Davis and just give thanks for his life. I had such a heavy sadness in my heart for Maxton and his amazing mother, Ashley. I reached down to change him and he opened his eyes really wide, lifted his arm straight up in the sky, and wiggled his little fingers. It sounds silly, but I thought maybe he was waving to Maxton. Please keep his family in your thoughts.

2009-03-20T20:33:00.004-04:00

Davis is doing extremely well here at home. He likes to look around at everything in and out of the house. He pretty much stays at home with one of us unless he has a doctor's visit. We did take a walk around the college for Carolyn's birthday but he was out for the whole thing. He loves his crib and his mobile which is exactly like the one Nurse Shanda let him use while he was in the hospital. Aunt Katie Grace brought it over today.

His feeding is really going a lot better. He has successfully taken his whole feed several times for us, but for most of them, he kind of poops out before he finishes. It is exhausting him to try to suck swallow and breathe all at the same time with his undersized left lung but he is doing better every time. On the last Doctor visit Davis had gained an ounce a day weighing in at 7lbs 14 ozs. We are so proud of our little turtle....

By the way, Davis misses his nurses.

Home Sweet Home

2009-03-16T19:27:00.003-04:00

Our internet finally works again! Sorry for the long delay in posting. We live in a small town and it's taken the internet folks until now to straighten out reconnecting our service.

Last Tuesday, Davis was discharged after 40 days in the Duke NICU. Nurse Shanda and Nurse Lindsay were there to see him off, and as you can see in that first picture he wasn't all that sure what to think of the whole situation. It was bittersweet in so many ways to leave. While we got off easy by CDH standards, those 6 weeks felt a whole lot longer. We miss his nurses SO MUCH and want to especially thank Shanda, Yvette, Lindsay, Jennie, Lauren, and Amber for everything they did for Davis.

Before we left, we took Davis to Parker's House to pack up a few things. It was surreal to see him there, where we spent so many nights thinking and worrying for him. We drove home, where my mother and sister in law surprised us with a spotless house, a crockpot full of chili, and lots of baby goodies including a beautiful crib. It was so good to be home.

Davis continues to progress with his feeds, and he's done much better since we got home. The last several days he's taken between 40-55 cc's from a bottle (his total feed is 66). Today, for the first time, he took the WHOLE THING! He is pretty zonked after all that hard work, but it was very exciting for us. We're still celebrating! He doesn't wake up for feeds at night, so we don't try a bottle then, but hopefully he will as he becomes stronger. I plan to ask our pediatrician about that on Wednesday. We need Davis to take all his feeds from a bottle so we can avoid surgery for a g-tube. I feel totally confident he'll get there.

There's no place like home...

Last night at Parker's House

2009-03-09T22:52:00.003-04:00

This is sunset at Parker's House. It is so beautiful here.

Looks like tonight might be our last night in the Piedmont. If all goes according to plan, we may be going home tomorrow morning. We are so happy to be able to have our family under one roof, all the time... of course, we're a little sad to leave too. Through this experience we've made some relationships that we know will last a lifetime. We've got some of our nurses on speed dial, and under strict orders to come visit us ASAP!

Davis continues to make huge strides. He passed his hearing test today! This is a big deal in that he was on many medications that can contribute to hearing loss. Michael has expectations of Davis being a fantastic musician, so the hearing test was a big deal. He continues to struggle a bit with feeding. If he doesn't start oral feeds within the next month, he may need surgery for a G tube. Hopefully he'll make great progress at home and it won't be an issue.

Tonight I'm going to be greedy in my prayer requests. Michael's grandfather, Harry Ashworth, passed away this morning after a long illness. His service will be this Wednesday. Please remember his wife, Lula, and the rest of the family in your prayers. Harry leaves a huge mark on his family as well as the town of Brevard, and will be missed.

Please continue to keep Maxton in your thoughts. Maxton is puzzling the doctors and preparing to wean some of his ventilation & medication. We know from our experience with Davis what a rocky process this can be, and how hard it is to just wait and see what happens.

We also want to request that you keep the Massey family in your prayers. Nicholas Massey was one of Davis' roommates in the NICU and the TCN, and his family are such sweet people. Nicholas is struggling with some neurological issues and his parents are anxious to work through these issues and take their son home.

I hope the next post will be pictures of us leaving the hospital!

New Room

2009-03-07T23:11:00.002-05:00

Well, although we aren't home, we are still doing great. Davis was moved to a different room back in the ICN because he needed a space all to himself. It is the office with no windows. Tiny, but it is all his own. We are still working with the nurses and doctors to get a real day nailed down for discharge. Hopefully Monday or Tuesday.

The docs switched Davis' reflux meds from Zantac to Prilosec about 24 hours ago, and it seems to be helping with his symptoms. He took more food today than ever. In one sitting he took about 18 cc's with nurse Lindsay. That was delivered in a matter of minutes with no second thoughts on his part. It is a small amount but he is moving in the right direction.

All of your prayers and great positive energy have been working. We are so very thankful that Davis is finishing week 5 and is almost home. Our little family has been very blessed.

I know Carolyn has already said this but I want to say it too. All of this would not have even happened if it wasn't for Jes and Ashley at The Parker Reese Foundation. We are thankful that they turned us toward Duke for Davis' treatment and housed us and our guests at Parker's House. They are always accepting donations. You can donate any amount here. Jes and Ashley, we are forever grateful for the miracles Parker is working in all of our lives.

Minor Setback

2009-03-05T11:01:00.002-05:00

Bummer. So, while I was packing up the last bits of our stuff at Parker's house, one of the fellows from the ICN called with some disappointing news. They're not sure Davis can go home just yet. The two big issues of concern are withdrawal from methadone and reflux. He's only been off methadone for a little while, and it stays in your system for days. They want to make sure he tolerates being without it. With the reflux, they want to go up in volume on his feeds and need to do it gradually over a few days, then watch to be sure reflux isn't an issue. There's a possibility he may need a stronger medication, like Prilosec, if the Zantac doesn't do the trick.

We are definitely disappointed but want Davis to have more time if he needs it. We were a little frustrated in that these seem like foreseeable issues, and we don't exactly live just around the corner. We're still rooming in at the hospital tonight, so at least we get to hang out with him with more privacy than we have in the nursery. That's all the news for now-

Drumroll please...

2009-03-04T21:36:00.002-05:00

BIG NEWS! We are going home on Friday! Tomorrow night, we'll "room in" at the hospital. Spending the night in the hospital in a room with Davis will help us answer any last questions we might have while we still have the support of the nurses & docs right around the corner. Depending on what time we are discharged, we may stay at Parker's House on Friday night, but we'll be back in the mountains very soon. This is all happening very fast, but the thought of our family finally being together is... well, I don't even know a word for it. It's just the best feeling I've ever felt.

Davis had an echo this morning, which is basically an ultrasound of the heart. It showed that his hypertension is pretty much under control, but the right side of his heart is a little oversized due to being compressed for so long. There are a few other (minor) abnormalities that we'll continue to follow with cardiology, but we hope these things will get better with time.

Yesterday I placed the NG tube for the first time, and today I did it again. Basically, I threaded a thin tube through his nose to his stomach for his feeds. He was very upset with me for a little while afterwards, but it wasn't as hard as I thought it would be. (When he gets very angry, his bottom lip quivers. It's the most pitiful thing you've ever seen). After you place the tube, you check that it's in the right place by shooting a puff of air through the tube and listening with a stethoscope for a popping sound in the stomach. It's empowering to be able to do these things for him... makes me feel a little like his nurses, whom I admire so much.

I can't believe we're so close to being home! Initially, at our consult in Cincinnati, they told us to expect to be in the hospital for 3-6 months. To be going home in just a little over a month is more than we could have ever hoped. We are so lucky.

Homeward bound?

2009-03-02T21:22:00.003-05:00

Today, we got the news that Davis may get to go home within a week!!!!!!!!!! There aren't enough exclamation points to express how excited we are. We are spending this week learning how to use the NG tube and other care skills. I don't think this is something the hospital normally does, but I think the fact that we are there so much coupled with our compulsive questions has convinced the team that we are just obsessive enough to handle the whole NG thing. Things could change tomorrow, but we are cautiously optimistic that home is closer than we thought :) (!!!!!!!!!!!!!!!!!! ... a couple more for good measure).

It's a little early for goodbyes, but we will miss our nurses so much, and of course we'll miss Parker's house too. I remember Kellie and Brad saying once that Parker's house felt more like home than their house did... I totally know the feeling. This house is so special to us. In the month and a half since we've moved in, we've been through some of the most intense experiences of our lives. From being clueless expectant parents, to the night I woke up panicked at 5 am to find my water broken, to every sleepless night spent worrying Davis might not live through the night, to now - preparing to take him home... it's all happened inside these walls, on this peaceful old farm. This house has seen joy, heartbreak, and every emotion in between. That does something to a place. We are indescribably grateful to Jes, Ashley, Parker, and Rob & Joanna for sharing Parker's house with us and giving us a home these past 6 weeks.

Tomorrow, Baby Maxton will be born and this crazy journey will begin for another family. Maxton's mother and I have never officially met, but we will be thinking of them all day tomorrow. The CDH connection is a strong one, even if it is virtual. Michael and I have both laughed, cried, worried, and rejoiced for dozens of babies and families we may never meet. The intensity of this experience is like nothing else- there's so much I want tell Maxton's mother and other expectant CDH parents, but words are insufficient to prepare for something like this. Good luck, Maxton, we'll be thinking of you and anxiously awaiting news of your entrance into the world.

Sweet Boy

2009-03-01T22:30:00.002-05:00

The eating struggle continues... his nurses these last few nights have felt that he doesn't have an oral aversion, and the reflux isn't making a significant difference either. It seems that his problem is that he just hasn't learned to suck, swallow, & breathe all at the same time. He's uncoordinated or, as they like to call it, "disorganized" in his eating. We keep working with the paci, attempting with the bottle, and trying nursing. Sometimes, he'll take some- other times, he's just not interested at all.

Nurse Amber noticed yesterday that Davis may have a small abdominal hernia (not uncommon in CDH babies). One of the surgical residents came to look at it and felt it may be that the musculature weakened with the increase in pressure when the intestines moved from the chest to the abdomen. It's something we'll just watch for now, and hopefully it will heal itself with time.

Nurse Jennie is taking her GRE tomorrow, and we want to wish her lots of luck! Jennie was Davis' first nurse- she carried Davis from me to the stabilization room, and she's loved and taken care of him ever since. Good luck Jennie, we love you!

Chillin' in the Crib

2009-02-27T21:15:00.004-05:00

Davis had a visit from his Great- Grandparents again today, and his Great- Grandmother Ovid finally got to hold him. He didn't want to wake up for her, but we're still so glad she could spend some time with him. She loves babies (Davis is her eighth great-grandchild) and we think she really enjoyed it :)

He also moved from an isolette to a crib today, which he seems to really like. There's more to look at in the crib, so he doesn't get bored. Nurse Shanda saved a super cool mobile just for him, and he absolutely LOVES it. It is very colorful and funky. We left him some photos of us taped to the side of his crib, and he likes to look at those too- funny enough, he seems to like the photo of all three of us (taken when he was just a few days old) most of all.

Eating continues to be a challenge, as is reflux. Davis is on Zantac to help with some of the reflux symptoms, but he does still cough, gag, and occasionally throw up. Fun fact: the fancy hospital term for throw up is "emesis"- sounds much nicer, huh? When it comes to bottle feeding, he will sometimes take as much as 15 cc's or so, but those instances are relatively rare. More often, he'll get confused as to where to put his tongue, or he'll get a good latch and then get scared when milk comes out. Sometimes he won't try at all. Working with the bottle seems to wear him out pretty quickly. If anybody out there has any feeding tips or tricks, we'd sure love to hear them.

The Big Move

2009-02-27T01:49:00.004-05:00

This afternoon Davis moved from the ICN, where he has lived since he was born, to the Transitional Care Nursery (TCN). We are one huge step closer to being home and so excited. One of the first things he did once he got there was have a bath... you can see what he thought about it.

Some of you may know this, but the survival rate for CDH is 50%. We look at Davis and feel such overwhelming gratitude that he is here with us, breathing on his own and continuing to do well. So many families- those dealing with CDH and otherwise- are not so lucky. Tonight, our hearts are broken. Joseph, a beautiful CDH baby boy, passed away after 23 days on this earth. Please pray for his parents, Sky and Carla, that they might find peace.

very superstitious

2009-02-25T21:38:00.005-05:00

Today Nurse Lindsay told us that Davis is next on the list to go to the Transitional Care Nursery (TCN). This is great news! The TCN is for babies who are working on feeding & growing- in other words, healthier kids who are on their way HOME!!!! He'd be there now if they had enough space for him. We toured the TCN today and it seemed more peaceful & quiet than the NICU. His nurses can follow him there, which is really important to us. Davis has amazing nurses. Even though I really want to take Davis home, when I think of leaving Jennie, Yvette, Shanda, Lindsay, & all his other primaries, I get a little choked up. These ladies literally saved his life, and they did it with so much skill, love, and compassion that I feel like we could never thank them enough.

The big issue keeping us in the hospital is feeding. Davis eats through an NG tube that goes through his nose all the way down to his stomach. We're working on encouraging him to try eating by mouth... so far, it's slow going. The nurses say that one day a light bulb will go off, and all of a sudden he'll just get the hang of it. We sure hope so! He did take 16 cc's from a bottle today... it's a start.

We've started making predictions on when we'll be home. I would have never let myself do this even a week ago. There's a certain kind of superstition that I think is common to parents who have NICU babies. It manifests in lots of little ways, and I think the doctors and nurses feel it too. For example, for weeks I never wanted anyone to even say the word ECMO around Davis. If he was having a good night, the doctors would tell us his success in half whispers, always followed by "but don't tell him that" or something similar. We would never ask questions that started in "how long" or "when", partly because we didn't want to get our hopes up and partly because we were scared to jinx him. Maybe it was lack of sleep, but I would try to read almost anything as some sort of sign of what the future held for our sweet little son. Sound crazy?

Then, the other day, it occurred to me (finally) that maybe I can stop holding my breath. We really are going to take Davis home, and that day is probably sooner than I realize. Even though he's been doing fantastically well for a little while now, it's only very recently that I've let myself believe he's out of the woods. That being said, Michael is predicting we'll be home in a few weeks. I'm going out on a limb here (NICU superstition be damned!), but I think he may be right.

Even if it takes a little longer, we are so lucky. Davis is way ahead of the curve comparative to other CDH cases- we count our blessings every day.

Bath Time

2009-02-23T03:39:00.003-05:00

Tonight, Nurse Yvette had us give Davis a bath. It was so nice to see him without ANY tubes or wires, if only for a moment. This was his first bath and though he didn't really enjoy it as it was happening, afterward he felt great! When we came in today, the IV tower was gone, meaning they had pulled out his UVC which was an umbilical access for his meds that had been in WAY TOO LONG. It was at risk for infection, but there was no other way to deliver his meds (barring an operation to install the broviac). We have been working on bottle feeds for a few days now, and since Davis was intubated for so long he does not want anything in his mouth. He will try a little and sometimes he likes the pacifier, so he feeds through a tube that goes into his nose and down to his stomach called an NG tube. Now that he can tolerate food in his belly, all of his meds are administered through his NG tube, straight to his stomach. So, no more uvc in his belly button! That is how we were able to get some pictures with nothing on him! This was a blessed night and we are so thankful for all of your prayers.....

P.S. Davis smiled today.

Eating, day two

2009-02-19T21:36:00.004-05:00

Today was Davis' second day eating, and he's still getting the hang of it. It takes patience because he gets confused, but we know he'll figure it out soon. For a brief period with Nurse Lindsay, he was excited about his paci- a great sign! Still not sure about surgery tomorrow- it will depend on how feeds go tonight, and whether they're able to place a PIC line this evening. Our fingers are crossed!

First Meal

2009-02-19T10:56:00.005-05:00

Davis had his first meal yesterday! He ate around 10 cc from a bottle and then went into a milk coma. We don't think he has an oral aversion, as some kids who have been intubated do, yet he still isn't quite sure what to do with a bottle. He gets a little confused and starts just sort of chewing on it after a while. He is now on a schedule to eat every 3 hours, and this morning they doubled the volume to 14 cc's each feed. We're still on pins and needles waiting to see how his intestines tolerate feeding. He hasn't pooped yet, but it could be that his intestines are just moving slowly because of surgery and morphine.

Speaking of morphine, he's down to 30 mcg, and coming down by 10% every day. The phenobarb, a medication he started Tuesday, seems to be helping most of his withdrawal symptoms, yet he still has some... tremors, nasal flaring, fussiness, etc...

If Davis makes great progress on feeds, we could possibly avoid another surgery to have a Broviac line inserted. He could have all his medications switched to be administered orally. Honestly, it's not likely that he'll make that much progress quickly enough. Our other option is to try again for a PIC line- maybe the 7th time is the charm?- so, as much as I hate to stick him again, they'll make another attempt on that today. He's on the surgery schedule for tomorrow in case the Broviac is needed.

Kangaroo Care

2009-02-17T22:25:00.002-05:00

Ever since Davis was born, we've seen signs all over the NICU to ask your nurse if your baby is ready for kangaroo care. Kangaroo care is when you hold your baby against your chest; it can help babies sleep better, help moms with milk supply, and in general make moms and babies happy. For the longest time, these signs would just kill us- especially when Davis was on minimal stimulation and we couldn't even touch him. We'd scrub in and go sit by his bed, wishing we could get some kangaroo time. Today, finally, we got to do it! Davis and I snuggled for a couple of hours, and Michael got to hold him too after the shift change break. I loved it :)

Davis is still doing really well, but he is struggling with a couple of issues. One of them is morphine withdrawal, as they've been coming down on his dose gradually. He's still on about 40 mcg- not a huge dose- but his body has become dependent. He started on phenobarb today to help with the withdrawal symptoms, which break my heart. He has tremors, a higher heart rate, and is generally fussy and uncomfortable. We heard him cry for the first time today. He's still hoarse from the breathing tube, so it was a little bitty pitiful cry, but he is definitely letting us know that he's uncomfortable.

The next step for Davis is to start feeds. There are a couple of things holding him back from feeding right now. His "gut motility" (movement) is impaired by his recent surgery and the morphine he's been on as well as his abnormal anatomy. He still has a replogel, which is a tube down his throat that suctions bile and air from his stomach and intestines. This will stay in place until he can process things on his own. He may start feeds with an ND tube tomorrow, which is a tube that bypasses the stomach entirely. It all depends on how much his replogel outputs. He'll let us know when he's ready. He hates the replogel and is constantly trying to spit it out, so we'll be glad when he no longer needs it.

He has another issue to work out, which is that all his nutrition and medication is delivered through a UVC line, which is like an IV that goes through his umbilical cord. The UVC is meant to be a temporary solution, mainly because the umbilical access should already be closed. He's already had the UVC longer than is ideal, which makes him at risk for infection. Most kids have a PIC line by this time, but the nurses have tried 5 or 6 times to place one and have been unsuccessful. Unless he tolerates feeds within the next few days, he'll have to have another surgery for a Broviac line so they can deliver medications and nutrition effectively. The Broviac line is a heart catheter that goes through a major artery. It is a surgery so it will mean temporary reintubation, general anesthesia, etc... not the optimal situation, but it may be the best solution until he can eat and take medication orally.

Was that too much information? I didn't mean to write a novel here. As always, thank you for your love and support. It means so much to us both that so many people are thinking of and praying for our family.

Look ma, no tube!

2009-02-16T19:06:00.005-05:00

Yay! Today Davis was extubated! He no longer has a breathing tube and is breathing on his own. (The tube you can see in the first photo is not a breathing tube, but a replogel, which removes air, bile, etc. from his stomach until his intestines can process things on his own). His nitric oxide (minimal dose) is delivered through nasal cannulas. I have never seen the bottom half of his face until tonight, and Michael only saw it for a couple of minutes right after he was born. He is so freaking cute!

The plan is to remove the replogel in the next few days, which is great, because he hates it and constantly tries to spit it out. Then we'll start feeds. His surgeon thinks he'll be eating cheeseburgers by the end of the week... not really, but we hope he continues to make the kind of progress he's shown so far. Feeding can be a big challenge for CDH kids (check out Carter's blog for proof of this), so we are constantly being told to have patience.

We feel so lucky to have Davis. Tonight in the hallway outside the NICU a family was gathered, crying together. Everyday we feel so much gratitude for Davis' life and strength.

Best Valentine's EVER

2009-02-14T23:17:00.003-05:00

Today I got to hold my baby for hours. It was wonderful!!!! He was awake for the first hour or so and he was really alert, looking right into our eyes. He snoozed the rest of the time. I can't think of a better Valentine's gift. This has been the best Valentine's ever- Davis has added so much more love to our lives.

He also got his first sponge bath today. Nurse Yvette (one of Davis' primary night nurses) decided it was time that Davis cleaned up a bit. He likes to stay up late and hang out with Yvette... she's teaching him how to talk like a New Yorker.

Hopefully Michael will get to hold Davis tomorrow. Because he's got so many wires and tubes, etc, it's kindof an ordeal to move him from his isolette. Once you hold him, you have to hold him for a while (oh darn!), otherwise Michael definitely would have held him today.

This has been such an amazing day....

post-op, day 1

2009-02-13T19:22:00.004-05:00

Today, when we came in, Davis was off minimal stimulation! No more headphones, eye mask, or screen around his crib. He was just hanging out, being a normal baby, but still pretty zonked after surgery and all that anesthesia.

He is doing amazingly well. The doctors prepared us for the fact that Davis might be sicker after surgery, but so far he's definitely proving them wrong. He is almost off nitric and on very low ventilator settings. Today, his doctor told us she would extubate him today if not for the morphine he's on for pain (morphine causes slowed breathing- as soon as he's off, he can breathe room air). She also said Davis has the most lung of any CDH baby she'd ever seen (!!!!!!), and this from a doctor who worked at a major CDH center in Florida. He continues to amaze us with his progress, and there's a possibility that we may get to hold him on Saturday.

Davis is really, really strong. He no longer needs one nurse that attends only to him... now, he shares a nurse with another baby that will move into his room this evening. We love him so much and can't wait to take him home. That day seems closer and closer all the time...

out of surgery

2009-02-12T14:50:00.002-05:00

Davis went to surgery around 11.30 this morning and the surgeon just came out to tell us he's done and that everything went well. The hole in the diaphragm was medium to large, so they did have to use a patch rather than just sew the diaphragm back together. The small intestine, large intestine, and spleen were all herniated. They did also have to perform a Ladd's procedure to rotate the intestines and sew them in place. We haven't been allowed to go back and see him yet. Dr. Rice said he felt the surgery went well, Davis' repair looked good, and he feels like he'll be all right with time. We'll update more later...

A Visit with the Great Grandparents

2009-02-11T17:27:00.004-05:00

Davis' great-grandparents (Michael's grandparents) came to visit today. It was wonderful to see them and Davis did a great job staying stable for their visit. We're glad they came to see him today, because the nurses have told us that the next few days might be a little bumpy as Davis recovers from his surgery, which is scheduled for tomorrow around noon.

We know that Davis has to have the repair, and that it's the beginning of his road to truly healing and eventually coming home. Still, it's scary. He holds my finger with his tiny little hand, and I realize how small he is and I'm afraid for him to have such a major procedure. He's been strong so far and we just pray that he'll do as well as he has so far.

Some people have asked what the surgery involves. They'll make an incision below his ribs on the left side (where his diaphragm is herniated), and then move his intestines and stomach from his chest to his abdomen. Then, they'll repair the hole in his diaphragm. Depending on the size of the hole, they'll repair it either a) by stitching the diaphragm back together b) by using a muscle from elsewhere to patch it up c) by using a patch, like gortex or pig intestine. We're hoping the hole is small and won't need a patch, as that increases the risk of reherniation later and would be more prone to infection.

When Davis gets out of surgery, we may be back to square one in terms of his stability. He may need to go back on the jet ventilator, go back up on his blood pressure meds, etc... we'll see, there's no way to tell until tomorrow. We love his team and feel strongly that they'll take the best care of him possible.

a day of rest

2009-02-11T00:27:00.002-05:00

Today was an uneventful day for Davis... we love those kind of days! He's just hanging out, getting rid of some excess fluid, and preparing for surgery on Thursday. He did have one episode where he desatted and had what nurse Shanda called a diva moment. She was worried and checked all his settings... turned out he just had a wet diaper. (thank goodness)

He's started doing this really cute thing when he gets upset. He'll wrinkle his brow and look more concerned than any two week old baby ever should. He's getting used to how to use his eyes. Last night, he looked around for hours... just blinking and kicking his little feet. It's so nice to see him more awake and alert. The tough part is, we never want to leave when he's awake and his eyes are open. We ended up staying at the hospital until 2 am last night- even though he was tired, he just wouldn't go to sleep.

I know I say this on every post, but please keep thinking of & praying for Davis, especially on Thursday and in the days following his surgery. We really believe it makes a big difference.

Love

Mike & Carolyn

Surgery, the love frog, and a visit from grandma

2009-02-09T19:22:00.004-05:00

Davis had a visit from Grandma Laura this evening. He had his eyes open for most of the day today. He's on morphine so he's pretty groggy, but it is still so nice to see his eyes. Today we looked at each other for a good long while. We both feel so much closer to him after looking into his eyes.

Davis also got a new bedmate- the love frog! Elizabeth and Katie, his sweet little cousins, brought the love frog to keep him company. Thanks girls! Davis loves him.

Davis is on the schedule to have surgery on Thursday. That could change- we're learning that everything, all the time, at any point is subject to change- but we're hopeful that he'll be ready then and that everything will go smoothly. He's doing so well and we're so proud of him- he just needs to keep it up for a few more days to show the docs that he's ready to have his repair.

Go Davis!

peekaboo

2009-02-08T23:08:00.004-05:00

We had an amazing day with Davis today. We saw him peek open his eyes (we got it on video, will post it later), we got to kiss him, and we gave him a mini-bath with warm towels. To get to touch him- even for a little bit- is the best, and we love when we get to see him without his earphones and shades. He's still on minimal stimulation, but every now and then the nurses will give him a break and let his eyes and ears get a rest from being covered all the time. We love him so much and, although we're maybe a little biased, we're pretty sure he is the most beautiful baby who has ever lived.

Our little boy is making so much progress. He is so strong, it absolutely blows us away. He is completely off his epi (blood pressure meds) and coming way down on another medication. He is almost completely off nitric oxide, and all his numbers are looking great. We are cautiously very optimistic and so thankful for all the strides he's made so far.

We've been reluctant to announce it for fear of jinxing it, but if things continue on this path we could be looking at surgery this week. Surgery has to happen to repair the hole in his diaphragm and to move all his "plumbing" to the right place, but of course it's a little scary to think about such a little boy having such an invasive procedure. We know he'll do great and that this will start him on the path towards feeding and breathing on his own, and then to going home. Please, please keep thinking of and praying for Davis this week. It's sure been working so far. We love you all!

-Mike & Carolyn

bye bye jet

2009-02-06T23:40:00.005-05:00

Today was a big day for little Davis. The big news is he's off the jet ventilator! So far, he seems to be handling the change well. He's still weaning on the epi (blood pressure meds) and coming down on his PIP (pressure of ventilator), but the move to the conventional vent is huge. It is one big step forward to surgery. Our little boy is so strong. We are so proud of him. Even if he goes back on the jet for a bit, at least they know he can handle the conventional vent for at least a few hours... long enough to make his repair, if it comes to that. I held Davis' little hand today. The paralytic is wearing off, and I could feel him squeeze my finger the tiniest bit. I know I say this in every post, but we love him so much.

Davis met his grandfather Carnahan for the first time today. I think it was love at first sight (for one of them anyway- the one that can open his eyes). We are so glad that Dad is here... especially because he's a really good cook! Catherine and Karen left this afternoon and we miss them already.

We are more grateful than ever to have Davis today. One of the little girls in his room passed away last night. She was very small and born extremely early, but fought hard for three weeks. It was a surprise to everyone because she seemed to be doing better. That was scary for us. She went very quickly, before her parents could make it back to the hospital. Our hearts hurt for their family and for the nurses, who I know are affected when things like this happen. Life is so precious. Please pray for this family to heal.

Carolyn

Play date!

2009-02-06T01:19:00.004-05:00

Davis' friend Carter came to visit today. It was so wonderful to see him for a lot of reasons. His parents have been so supportive and kind to us, and it really gave us a lot of hope to see Carter doing well. Only a few months ago, he was where Davis is now. It was also good to see them because we got to hold Carter! It has been killing us that we can't hold Davis- so much so that Carolyn has been contemplating asking random women in the hospital nursery if she can hold their babies. Just kidding, but it was nice to get some baby time. We can't wait for the time when Carter and Davis can hang out and play and just be normal kids.

It was a little frustrating today in the NICU. They're doing construction (which is really loud) and Davis had a lot of supports weaned. The most disconcerting thing is that they chose to do all of this weaning without one of his regular nurses present. We did voice our concerns and hopefully that won't happen again. Everything ma

y be different tomorro

w depending on how he tolerates changes over the night, but as of now his epi (blood pressure medicine) is the lowest it's ever been, his oxygen has been reduced, they took away the paralytic (which means he can finally move around), and they weaned the vent pressure slightly. It was a big day, and so far, so good. He still has a long way to go, but his progress is amazing. Every day, we get a little closer to surgery.

Nurse Lauren signed up to be one of Davis' primaries tonight. She took care of Carter, and we are so glad that she is on Davis' team. All of his primaries are wonderful. They really know Davis better than the doctors, and are his constant advocates. We

are so grateful to have them.

Today, we were talking about the hidden blessings in our situ

ation. One big one is all the love and support we've gotten. Difficult times can really bring out the best in people. Because we have Davis, each other, and the support of our families and friends, we truly feel like the luckiest people alive. Thank you.

-Mike & Carolyn

Sawing some zzzz's

2009-02-05T12:41:00.002-05:00

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!

2009-02-04T18:42:00.003-05:00

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

2009-02-04T01:59:00.004-05:00

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

2009-02-03T16:04:00.003-05:00

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

2009-02-03T05:36:00.003-05:00

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....

2009-02-03T02:42:00.002-05:00

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:

2009-02-02T16:37:00.002-05:00

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.

Baby Steps

2009-02-01T21:51:00.007-05:00

Well, Davis had another really good day. He was making really tiny moves in the right direction. The goal over the next while is to ween him off of his oxygen, meds and machines and ready him for surgery. This could take 10-14 days. As of now, his oxygen is down from 100% to 79%. The jet ventilator that he is on has gone from a pressure of 30 to 25 and he is responding really well to these adjustments. These moves are really slow and his reactions tell everyone if he needs more or less of a certain thing. We are so very proud of our little man and we are very thankful that all of you are posting, commenting and praying for our son and sending him good love. Not much to say tonight. Carolyn was discharged from the hospital tonight and we finally get to sleep in a real bed back at Parker's House ( www.theparkerreesefoundation.com ). We really enjoy being beside our son and gushing over him with all of our hearts. Whenever his nurse on duty checks his diaper and looks under his headphones and eyecover we like to be there to see his eyes. Since he is already being touched it is a good time for Mommy and daddy to touch him too. Carolyn got to wipe his eyes. We just happened to have the cell phone in there and snapped these today. It is really hard to leave the hospital. We are very tired and need rest but we still want to go back really late tonight to visit him. I think Carolyn is torn between healing and resting herself or going back to the hospital. Thank God we have that decision to make. -Mike

These guys are amazing

2009-02-01T08:09:00.004-05:00

Davis stayed stable throughout the night last night! The team gives him fluid boluses to help control his blood pressure, and they seem to be working. We stayed with him until around 12:30 last night, just sitting with him and sending him all our love and positive thoughts. We can't make noise around him or touch him, and he is still on minimal stimulation with the big headphones and eye mask. Despite all this, we really believe he can sense that we are there. We are so incredibly lucky to be his parents. He is such a special baby. I never knew you could love something so much.

The NICU team is amazing beyond belief. If I ever had any doubts about our decision to have Davis at Duke, they have completely evaporated. Yesterday Dr. Goldberg, the medical director of the NICU, came in on his day off to care for Davis. Last night Dr. Goldstein, the neonatologist, slept at the hospital instead of going home because she wanted to be nearby in case he had another bad night. These doctors and nurses save our son's life multiple times a day, and care for him so thoroughly on what is literally a minute to minute basis. There is never a time when someone is not there monitoring him and making adjustments to make him as comfortable and stable as possible. We can feel how much they truly care. I am in awe of their level of skill, patience, and compassion. Because of them, we know that Davis is going to come through all of this.

If you have a prayer circle at your church, please put Davis on your list. Send his blog to as many people as you can. If you don't pray, send positive thoughts his way. We believe in the power of thinking positively, and we want as many people sending him love as possible.

-Mom

What a day!

2009-01-31T19:36:00.004-05:00

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

2009-01-31T11:16:00.005-05:00

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

2009-01-30T23:45:00.004-05:00

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!!

2009-01-30T17:03:00.003-05:00

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....

2009-01-29T14:43:00.003-05:00

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

2009-01-27T16:34:00.005-05:00

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...

2009-01-23T23:47:00.003-05:00

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

2009-01-21T20:00:00.004-05:00

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

2009-01-18T22:48:00.002-05:00

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

2009-01-14T18:53:00.002-05:00

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

2009-01-08T17:06:00.003-05:00

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.

4 lbs, 5 oz, 6 weeks to go!

2008-12-20T22:32:00.003-05:00

At our biweekly ultrasound Davis measured in at 4 lbs, 5 oz. and everything is still looking pretty stable. The ultrasound technician couldn't believe how much HAIR Davis has. I guess he takes after his mother- I wonder if it will be curly! We got some good news- there's no evidence of hydrops (excess fluid that could trigger labor) and the intestines still appear to be all that has herniated. We're coming down the home stretch... only around 6 more weeks until Davis' birthday! Dr. Coulson recommends we go to Duke a bit sooner than that- around a month from now just to be safe, so that's the plan.

When we knew we'd have to deliver away from home, I was worried about where we would stay and how we could make those arrangements. Then we found Jes and the amazing Parker-Reese Foundation. Check them out at www.parkerreesefoundation.com. They are absolute angels that have lifted a tremendous burden from us in offering a home away from home. I can't even begin to say how incredible this foundation is, only that I hope I am in the position to one day help someone the way they are helping us. Thanks Jes & Ashley :)

Another CDH family needs your prayers. Yesterday, Davida's beautiful son Luke lost his long fight. Davida is a wonderful mother who gave Luke a lifetime of love in the months she had with him. My heart has been so heavy for her today. Please pray that she & her family are able to find peace.

Awareness

2008-12-17T20:39:00.004-05:00

Even after Davis was diagnosed, I didn't understand the big deal about awareness. The words "congenital diaphragmatic hernia" alone tend to make people's eyes glaze over, and it's not the easiest sickness to explain. People hear "hernia" and assume it's no big deal. It felt like such a chore to educate anyone who happened to ask. I just figured the less I said about it, the better. Other moms whose children are battling CDH were busy writing proclamations to the governors of their respective states to get March 31 declared Congenital Diaphragmatic Hernia Awareness Day, urging their friends and family to wear turquoise ribbons in honor of the day. I didn't see the point. Raising awareness seemed exhausting, and it wouldn't make Davis even a little bit better.

Then, the other night, I was having dinner before one of Michael's gigs. We live in a small town, and word gets around fast. We ran into one of my mother's old acquaintances and talked about a couple of things before the woman got around to asking about Davis. "Oh, that's right," she said, "you've got that WEIRD baby."

I wish I could say I had a witty retort that put this woman squarely in her place, but I didn't (even though I thought of several after the fact). Weird baby? I know she didn't mean to be cruel, but I can't find words to say how hurt I was. This woman, albeit tactless, isn't a mean person, and I really tried to just brush it off. Maybe it's pregnancy hormones, but I couldn't help crying the whole way home. I called my mom, which was a mistake, because she wanted to go back to the restaurant and give the woman a piece of her mind. I talked her out of it and thought for a long time about why one woman's tactlessness would get to me the way it did.

What I came up with is this: Davis is my sweet, innocent boy. He isn't even born yet, and already he has huge fights ahead of him. Most importantly, he has to fight to survive, but after he wins that struggle there will be others, too: the struggle to breathe independently, the struggle to eat on his own, the struggle to catch up to his peers after many long months in the hospital. What upset me about that woman's careless comment is that in the midst of all this, there is also the struggle to be understood.

Like it or not, we tend to see what we don't understand as strange. Even though CDH is as common as spina bifida and cystic fibrosis, most people haven't ever heard of it. There is the serious PR problem of the name itself, coupled with the fact that until recently relatively few of these babies survived to tell their stories. There aren't many news articles about CDH, and no celebrities are touting the cause- only a few dedicated mothers who work tirelessly online and in their communities. I didn't understand why they went to such lengths, but I do now.

I get it. I will write my letters, wear my ribbons, and tell anyone who wants to know the long story of why a simple thing like a hole in the diaphragm is a life or death matter. As much as I wish it wasn't, CDH is a part of Davis, and he deserves to be understood.

By Special Request

2008-12-11T13:30:00.003-05:00

Some of you asked for pictures of pregnant me. I guess more than one of you are curious as to what I'd look like if I swallowed a beach ball! I've tried to stay away from the camera as much as possible, and I was successful until last Saturday's Christmas Tea. The ladies at work insisted. So, here it is... ask and ye shall receive.

Davis will be a Blue Devil

2008-12-10T13:14:00.003-05:00

After a lot of thought and visiting both hospitals, we've decided Davis will be born at Duke instead of Cincinnati Children's Hospital. A couple of things really swayed our decision- one was the feeling at Duke, which was much more personal and not quite as overwhelmingly large. Another factor was Hope, a nurse & coordinator extraordinaire who has been like an angel to us. Thanks, Hope :)

When we toured Duke, we were able to visualize everything that will happen on the day of Davis' birth. Some of those things were hard to see... ECMO especially. ECMO is a heart/lung bypass machine that is often lifesaving for CDH babies, but it's dangerous and just plain scary. Some of the other CDH moms I've met have really helped ease some of our ECMO jitters, and I suppose it's better to know what to expect now instead of being surprised later, when so much else is going on.

At Duke, we met Carter and his mom, Kellie. Carter is the first CDH baby I'd ever seen, and it was absolutely the best part of our visit. Carter's progress has given us so much hope, and, as Michael's Aunt Linda would say, he's cute as a bug's ear. Check out his blog: www.bradandkellie.blogspot.com.

Right now, the plan is to induce on Sunday, February 1 or Monday, February 2. This is of course assuming he doesn't come earlier. Even though I don't see how I could possibly get any bigger than I am now, I hope that doesn't happen. Davis needs all the time in there he can get!