Amazing Day

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

Davis' cousin

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!

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. 

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

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

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

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

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...

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?

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

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!