"Dade's off of the refrigerator!"

Its been another big week of updates and things to quickly share.  I realized that we haven't even told many of you that Dade is no longer on the ventilator! Last Saturday we received a call from Dade's nurse to let us know that they were planning to take him off of the ventilator once we could get to the hospital.  We were so excited and couldn't get there fast enough!  He has been a different child ever since.  Dade has been more content and comfortable and that has been a joy to see.  Him being extubated also means that we can finally hear our little boys cries and sweet sounds.  His cry was weak and hoarse for the first few days, but is now stronger.  One of my friends was sharing with me that her children have been praying for Dade. Her son prayed "Thank you God for taking Dade off the refrigerator."  We are honored that your children are praying for our Big, little miracle.

Here was the tube down his little throat...

Here he is without the ventilator! This was him on CPAP after the tube came out. He is now just on a regular oxygen nasal cannula at 2 liters per minute.

Many of you are now asking "When is Dade going home?" We love to think about getting him home, but we have a few more obstacles to overcome before we can even get excited about that.  Dr. Anderson has stated that without any major hiccups or new issues, we should be atleast half way through this journey in the NICU. We are 66 days in...

To Do List to get home: 
1) He has to continue to do well on just the oxygen.  They will continue to wean the amount of oxygen as his blood gases are good.  It is a very big possibility that we will go home with oxygen and we are comfortable with that.
2) Dade has to come off of his sedative drug, which we are very close to, and off of his methadone.  At 5pm and 5am, he usually has a little fit as he waits on his 6:00 dose of methadone.  They will have to wean that slowly.
3) Eat! CDH babies are known to have issues with their feedings.  Reflux is usually a big factor and some babies have an oral aversion.  Its foreign to them to have to suck, swallow the milk, and have to continue breathing well during all of that.  Dade is now having occupational therapists work with him on learning how to take a bottle.  He was able to take 8 ccs on Thursday and 7 ccs on Friday.  Dade has had some spit ups, but its primarily when he is very upset or when they have just increased his amount of milk that he is getting.  We are now up to 55 ccs every three hours. 80 ccs is our goal for him to be on "full feeds" and no longer needing the supplement from TPN. If Dade is not able to take the full amount of milk by mouth every three hours, it is possible that we could also go home with a feeding tube.  It would be called a "g tube" that is surgically placed for him to receive feedings to supplement what he could take by mouth.  The nurses will give us extensive training with this and make sure we are comfortable using it.  DJ and I know that if it means that we get him home faster, we are willing to do whatever is needed.  Some of my patients have feeding tubes and am familiar with it if he needs one.

This past Wednesday, September 24, Dade turned two months old!!!  We can't believe how big he is and how much he has been through.  Two months seems like 2 hours some days and then 2 years on others.  One reason we write this blog is to keep a log of his obstacles, when they were, and what all he has overcome.  We are amazed and so proud of him.  The minute he was born the nurses called him "feisty."  I truly feel like him being feisty is one reason he is here with us today. Dade has been a fighter in every since of the word.

Last but not least...
As you know, Cold and Flu season is fast approaching.  This means flu shots and Vitamin C for some, but for babies with CDH, this means very serious business.  Dade was a little lethargic yesterday and not quite himself last night.  We were honestly concerned if he was starting to get sick.  The nurses were watching him closely last night.  He was back to himself today, but the nurses have talked to us this weekend about needing to limit guests. We don't want to take him home a day earlier than he is ready, but we also don't want to stay a day longer if there's a way to prevent it. It has meant the WORLD to DJ and I to have each and every one of you come visit.  It has given us some normalcy to at least see our friends/family and give us a bit of socialization.  However, it is now time that we limit visits to family only.  We can not risk him getting ill while he is still so fragile and only has one good lung.  As the nurse stated, "a common cold can put him back on the ventilator."  Thank you in advance for understanding as we've had to shift gears with visits.  We are praying for a calm flu/rsv season and that in the spring/summer, Dade may be a little less critical and sensitive.

Lots to Catch Up On!

Time flies when you're having fun (and when you have a baby in the NICU and go back to work after almost 4 months), so imagine my surprise when I looked today and realized it's been a over week since we've written a new post! There's a LOT to update you on, so let's get to it.

To start it off, let me say that this week has been great, though not without its challenges.  Like hug-the-nearest-random-stranger great, or even Andy-Samberg-hifiving-a-bobcat great.

Downright epic, y'all.

Here are the general highlights from the strictly medical side of things:

• Dade's blood clot continues to resolve itself.  He had an echo-cardiogram at the end of last week to see how things are going with it. The clot is still there and will be for a while, but it has opened more on one end.  That means the blood thinner is doing its job and things are moving in the right direction!
• Dade is up to a little over an ounce on his feedings now!  He's still being fed by tube and will be until after he's off his ventilator.  He had a little trouble at first with a full ounce because gravity feeding through the tube can go a little fast.  He spit up several times, but that seems to have been rectified by using a pump to send the milk through the tube now rather than relying on gravity.  The pump can be set to feed him over any amount of time, so the nurses can give him the milk slowly.
• The ventilator settings are slowly but surely coming down!  We're so proud of Dade and how he's handled the tweaks on the vent.  Pray that he can keep it up!  No mention of when he may come off the vent (it will be awhile yet), but he'll move to a nasal CPAP after this.  
• X-rays have looked magnificent the last couple of days!  His right lung has had a lot of air in it, and his heart has even shifted a little more to the left!
• Baby Betty Ford continues.  Dade is now completely off of his pain medication, and his sedative is next.  He's on methadone during this time to help mitigate any withdrawal symptoms. The upside to this is that he's now more awake and aware than he's ever been, but the downside is that he's now more awake and aware than he's ever been!  He's starting to notice things like the tube that's floating in front of his face and the fact that it runs down his throat.  He doesn't like that one bit.  He tolerates it, of course, but there are times when he gets mad that he'll start grabbing at the tubes and tugging on them.  During those times, we just gently hold his arms, rub his head, and help him chill out.     

One of the biggest things to come out of the past week is that WE CAN HOLD DADE!!!  It took 49 days for him to be ready (not that we were counting at all), but the day finally came!  We were a little worried about how Dade would take it; he'd rarely been lifted from his bed or moved unless absolutely necessary, after all. It turns out we worried about nothing, though.  It took him a little while to settle into Tara's arms, but after that, he loved it!  We try to hold him a little while each day now because 1) it's awesome, and 2) he really seems to relax more while he's being snuggled.

Discussions with Dad regarding the imagery of societal constructs in Green Eggs and Ham & Naptime with Mama

The day we were able to hold him the first time ended up being even bigger though... Remember Tara's post about praying for a room with a view?  We have one!!!  Dade has a window and sunlight, and is doing very well with it!  He was a little fussy the first day because he wasn't used to the brightness, but he's settled in to it.

The view from our window!

Moving night.  Dade slept like a rock through ALL of it.

Along with the new room has come a new bed, too!  His little giraffe warmer bed is gone, and Dade is officially hanging out in a crib.

The new sleeping quarters

And yes, that's another crib mobile.  We braved those waters just one more time and ended up with a win!  He didn't freak out and actually seems to enjoy the music and colors now!

So there's your mega-size UpDade for today.  Thank you as always for your continued thoughts and prayers!  They're being heard!

We love you all!

                                             

Slow and Steady, Steady and Slow

We're slowly but surely moving to the part in this first chapter of Dade's story where no news is good news, but that doesn't mean there's nothing to update! Dade has made some slow forward progress this week, and some other little changes are coming down the pipe. The swelling of his head continued to decrease, and we think his noggin is finally back to normal! While an ultrasound hasn't been done to formally check it out, the decreased swelling means that the blood clot we talked about a week or so ago is resolving itself!  Besides that, here are some other baby steps (ha!) that the little guy has made this past week:

• His feedings increased to 16cc (just over 1/2 oz.; 1 oz. = 30cc) every 4 hours.  Dr. Anderson has started to increase his feedings more frequently.  Dade has been sucking his ET tube in between feedings, so Dr. Anderson gave him what he was asking for!
• Dade's blood gasses have continued to be good, so his ventilator settings have come down.  While we still have a long road until he's done with it completely, it's great to see him making progress!
• His second and final chest tube was removed on Wednesday, 9/3.
• As we mentioned in a previous post, Dade also started Baby Betty Ford on Wednesday and is weaning from his pain and sedative medications.  Both are narcotics, so since he's been on those meds literally since the day he was born, he's become chemically addicted to them.  He gets a dose of methadone every 12 hours to help with the withdrawal symptoms.  He's been having a little fit when it gets close to dose time, but he was able to calm down and sleep through it today thanks to some help from his Mama :).  He's being weaned from his pain medication first, and the sedative will be next.
• He's wearing a onesie for the first time today!  I really thought it was a different baby when Tara sent me a picture!

Exhibit A: Newly Discovered Species Notnekkedus Infantus

All great stuff!  Another huge thing from this week was during a conversation with Dr. Anderson.  One of the things I like most about Doc Anderson is that he doesn't blow sunshine up your nose and has been very conservative and cautiously optimistic in his opinions of Dade's prognosis as we've moved from step to step.  Dade's nurses who I know are reading this know exactly what I'm talking about!  That said, he'd never say something to us that gave us false hope or made us think that Dade is doing better than he actually is, but he used the phrase, "when you take him home."  This is a very, very, big deal, and something that we have thanked God for each day since we've heard it.  While we haven't overtly pointed it out in these posts, it has been our reality until now that there was a very real, roughly 50/50 chance that Dade might not go home with us.  Don't get me wrong; Tara and I both have had a peace about this from the get-go, but we're ecstatic to hear Dade's doctor say it out loud!  We have a long way to go, and I expect some bumps going down the road - some bigger than others.  No matter how long it takes or what we have to do to get there, we are proud for every step that gets us to the end result...home!

Speaking of Dade's nurses, I want to take just a second to say a forever-inadequate "thank you" to them for not only being so professional, knowledgeable, and patient in caring for Dade (and us too!), but for loving Dade like family.  We cannot say enough good about the care he receives day in and day out.  He's garnered quite the little fan club in the NICU and has been given a few nicknames like "305" (Dade Co., FL area code), and Dadelebug (like doodlebug, but with a Dade).  I won't try to name everyone here because I'll inevitably leave someone out, but suffice it to say that it's a great feeling leaving him with family each night!  I believe that working in a NICU like these folks do is a calling.  It's a genuine pleasure to be able to work with people like them who are built for what they're doing!

I'd say "that's it," but Dade has had a big week!  We're hoping by the end of this week that we'll get to finally hold him!  I'm not sure I'll be able to put him back in his bed.

In closing, we have a little PSA we need to share with everyone.  I'm back at school as of today, and Tara will be back at work next week.  If you want to come by the hospital, please make sure you check with one of us first.  Otherwise, we can't guarantee we'll be here, and no one can come see him without us!

We love you all!

Gotta Say It's Been a Good Dade - 9/2/2014

After a restless, uncomfortable night last night, and though today saw a few instances of Dade's grumpier side, he had a pretty good day!  He was very awake and more active than we've ever seen him, and is still recovering fairly quickly when he does get a little verklempt.

Linda knows what's up.

The swelling around his head continues to go down, which tells us that his blood clot issue is resolving! Praise God for that!

Dr. Anderson gave us some very good news today too: he indicated that Dade's level of severity is moving from "acute" to "chronic".  Now, this doesn't mean that we're 100% out of the woods, that we're going home next week, or that we won't encounter some significant bumps in the road as we move forward.  It does mean that we're certainly moving in the right direction.

We have three primary goals from here: 1) Slowly increase his feeding amounts until Dade is at normal levels and can wean from the TPN (liquid nutrition) he's getting, 2) slowly wean off the ventilator to another form of oxygenation support whether that be a CPAP or an oxygen tank with nasal cannulas, and 3) wean off the sedation drugs he's currently on.  Step 3, aka Baby Betty Ford, begins tonight.  Dade has been getting methadone doses throughout the day to help him prepare, and the nurses will watch how he does as he weans off.

We appreciate your continued prayers as we continue down this road!  It's going to be a long, slow trip, but hey... we'll take it! 

Daily Status UpDade - Monday, 9/1/14

It's been a few days since we've written a new UpDades post, but thankfully, there isn't much to update!  Dade has had a good few days and has continued to hold his gasses like a champ.  Dr. Anderson has weaned him a little further on the ventilator.  Also, Dade's swelling has gone down immensely since Thursday.  The little guy actually looks like himself again!  He's been awake today and we've been able to spend some time with him.  We spend time here all day everyday, but it's so much better when we can look him in the eye and talk to him.  He squirms and wiggles when we do, and we just can't wait for the day he can "talk" back! Dr. Anderson will most likely take his second chest tube out tomorrow. One step closer to holding him!!!  He had a good weekend and we had some very special visitors.  Thank you for your prayers, support in many ways, and love for our family. We will keep you posted on how this week goes.

"We Are Family"

In March when we met with Dr. Anderson, we sent an email to our families and some of our closest friends explaining Dade's diagnosis and just exactly what this road may/may not entail.  Through friends of friends, I heard from another CDH Mom who lives in South Carolina.  Being a "Carolina girl" myself, somehow that immediately made her even more special to me and I felt an instant connection from her first email.  She was so cautious and left the ball in my court for me to respond when/if I was interested.  She knew that this road can be a little much and she didn't want to bombard me.  I began to read her blog and got more familiar with their story.  Her son was a CDH baby and is now two years old. Hes beautiful, smart, funny, and their "wild card," she says.  She shared how she wanted to support us, pray for us, and answer any questions that we had.  To be honest, I probably dove in too fast.  I wasn't quite ready for all of her answers or what reality looked like with this condition we were facing, but I was so glad to finally be talking to someone that not only knew how we felt, but they had lived through it, and succeeded! She gave me hope.

We emailed weekly for several months and then sent frequent texts or messages on Facebook.  When Dade arrived, Id ask questions or share with her my saddest/scariest moments. I still do, daily.  Its been the biggest relief to have her to text whenever I need another Mom who has "been there and done that."  After I had been talking to my Carolina friend, Rose, I started talking with Kelly who was not only a CDH Mom, but had been at our same hospital with the same surgeon.  The biggest thing to remember with CDH is that no case is identical.  Their stories were very different from each other and Dade's is different from theirs.  It is still helpful to ask questions about what to do as a parent, what this looks like down the road, and even right now as we are on the ventilator.  Both of their sons have been a beacon of hope.

This network of CDH parents and children is NOT one that you look forward to joining, but we are so grateful for the knowledge and support from them.  Both of these mothers and CDH survivors have now come to visit us and have brought us much encouragement.  Kelly and her son came to visit Children's Hospital a few weeks ago.  Kelly was able to see Dade and we were able to all hug.  We went to lunch together and had such a special visit.  Both of these little boys were big fans of "Mr. DJ!"  After texting with Rose this week, she learned that Birmingham wasn't as far as she thought and immediately started planning a trip to see us.  In a day or two, she surprised us with saying that not only was she coming, she was bringing her wonderful husband and children.  DJ and I were elated and couldn't believe they'd take their Labor Day weekend to come to see us and meet Dade.  When Rose got here yesterday, I hugged her so tight and couldn't believe that this friend that I've talked to for months had found her way to our family to love and support.  She said that she and her husband truly felt like God telling them to come visit us and help us through this.  DJ and I have met both of these families recently, but they feel like family to us.  I have texted Kelly at 2am and she answers immediately.  Rose asks me daily what to pray for specifically. She enjoys running and has committed to praying for Dade during her runs.

We had the joy of having dinner with Rose and her family last night and breakfast before they headed back to South Carolina today.  DJ and I got in the car with tears in our eyes.  We were so humbled by their visit and blessed to have them in our lives. We miss them already!  It was also helpful for DJ to have another Dad to talk to that had been in his shoes.  Brian was so supportive and I know will be there for DJ as we continue going through the trenches. We keep wondering and asking God to show us what we are supposed to learn and gain from this experience. We hope we can be an encouragement to other families! Here is Rose, her family, and Kelly with her son, Hollis. Their little boys are Rock Stars in our eyes!