The Million Dollar Question

Ever since Dade was taken off the ventilator, CPAP, and changed to oxygen we have wondered, along with everyone else, how long he will have to wear it.  Dade is only on 0.5 liters of oxygen which is a very small amount, but enough that it gives him that little bit of extra support when he needs it.  November 17, we had our check up with Dr. Lazono.  He is our pulmonologist at Children's and he is amazing! We loved him and his staff.  They were very thorough and have a whole-team approach.  We met with his respiratory therapist, nutritionist, nurse, social worker, went to X-ray and had labs drawn.  It was a 4 hour visit, but we felt like all bases were covered.  While we were in his office, the therapist took him off of his oxygen for about an hour.  Dade's oxygen saturation levels stayed between 95-100% without the oxygen! We wondered if he would start weaning him off that day, but with cold/flu and RSV season here and for a few more months, he wants Dade to stay on it.  We go back to see him in February and if he is still doing this well, we will have the oxygen just at night and then be off!

November 18 we went to see Dr. Anderson.  He is our beloved surgeon that we have grown close to.  He was very pleased with Dr. Lozano's report and with Dade's progress overall.  His surgical scars are healing nicely and his lungs sounded good.  One thing we have learned is that the doctors really push for nutrition and weight gain because if he is gaining weight, that means he is also building lung tissue which we desperately need.  Dade's xrays didn't show a substantial difference and the doctors say that they won't "look good" for a long time.  They have taught us to look and listen to Dade to know how he is, not to just look at the xrays.  We will also have a follow up visit with him in February.  Before leaving, I finally got a picture with Dr. Anderson and Dade.  He is a big part of our life and got us this far. It was good to see him again and hear the good report! We got to see some very special people that love Dade so much!

Last week we met our new pediatrician, Dr. Jeff Stone.  He is at Greenvale Pediatrics in Hoover and we LOVED it there.  We switched offices due to an insurance issue and we felt very much at home there.  Dr. Stone knew Dade's history and we felt so comfortable with him and his staff.  He said words that were music to my ears! He said that Dade was doing great, he wanted us to try feeding him, and most importantly, "I'm going to treat Dade like a normal kid!"  Yes, we all agree we have to be extra careful where we take Dade, who he is around, and carefully watch his breathing.  It was just wonderful to hear he is doing normal things, gaining weight, and right on track! He has come so far and there isn't a day, even when I'm up all night, that I don't rejoice in Gods gift to us.  Once we got the green light to try foods, we did! Last week Dade ate sweet potatoes and yesterday he tried carrots.  Carrots may be the winner! MawMaw, DJ's mother, is caring for him this week while we are at work.  She gave them to him for lunch and he sure seemed happy about it! I gave them to him tonight and he couldn't get enough! I'm hopeful that with increased intake, he will have increased sleeping. Please Lord! He is still up every three hours most nights.  It makes it tough to get up for work the next day, but again, I'm just glad we are home with him and that he is right down the hall! I also thank the Lord for the fact that he likes to eat and take his bottle.  It is very foreign for CDH kids to do so well with eating/drinking and he certainly hasn't missed a meal! He is up to 13 lbs and 24.5 inches long.

This morning, Dade's physical therapist came to visit him and work with us on ways to help him.  She was impressed with a lot of things he is able to do.  He certainly needs more core strength and head/neck strength.  We are increasing "tummy time" and she showed us easy things to do with him that are very helpful.  She will be coming once a month for now.  As we meet our goals, we will set new ones until we feel like Dade has reached his full potential.  If he needs other therapies, speech or occupational, they will be added by referral.

DJ and I are back at work and it's going well.  I've actually enjoyed getting back into the swing of things and somewhat of a routine.  If we could get Dade resting better at night, we would really be in a good routine.  Both of our mothers are caring for Dade while we are at work.  We are so blessed that they have made this possible.  We wish you a VERY Merry Christmas! We love the Christmas cards and hearing from you. Ours will be a little late, but they're coming!

Our First Halloween

Our goal all along had been to have Dade home with us for Christmas.  As Dade progressed, we hoped for Thanksgiving, but never thought we would be home for Halloween.  DJ and I wanted to have the perfect costume for Dade's first Halloween whether he was in the hospital or home.  We agreed that it would be pretty special if Dade dressed up like Dr. Anderson, his surgeon.  Dr. Anderson met with us in April to discuss what we were up against with Dade.  Once we were in the NICU, we saw him almost daily.  We found baby scrubs on amazon, ordered them, and asked DJ's mother to monogram them! He was decked out with his stethoscope too of course!  SuperHeroes come in all shapes, sizes, colors, and both genders.  The staff at Children's has been our group of Heroes.  Dr. Anderson and his team of fellows has been by our side since Day 1 and we are grateful for all they did for Dade!

Halloween night and weekend, our nieces and nephews got to come meet Dade for the first time! While in the NICU, they weren't allowed to visit.  You have to be atleast 14 years old or a sibling.  It was the sweetest thing to watch them light up and hold him! Our niece, Adyson, had prayed specifically that he would be home by Halloween and sure enough, she got to hold him that night! 

Baby Shower and Dade Celebration

One of my dearest friends, Erin, has been a part of Dade's journey since the day we found out we were pregnant.  She had been an encouragement when we weren't sure it was possible to have children and has been on "Team Dade" since Day 1.  She and several other close friends had begun planning a shower for me that was supposed to be in June.  After learning about our CDH, DJ and I agreed that it would be best to cancel the baby showers coming up.  As much as I had dreamed about this day with friends and family to celebrate our baby, it didn't make sense to register or get gifts when we had no idea what our future looked like.  The question back then was IF we would ever make it home and if we did, how big would he be and what would his needs be at that time.  As Dade kept getting better, the shower became a reality again and the planning began.  Katy, one of my best friends from college, "gathered the troops" from TROY and many friends came together to plan a celebration shower for Dade!  It was absolutely gorgeous and a dream come true.  Thank you to all that were able to come and hosted! It was such a memorable day!

Home Sweet Home

Welcome back to our blog! We realize its been almost a month since we have written and there are many reasons for that...We are HOME!  Between the hours of cuddling, washing and making bottles, giving Dade baths, calming the crying, MD visits, middle of the night feedings, etc. we haven't been able to update everyone.

The last time we updated, we had moved to the "rooming in" room that parents stay in prior to discharge.  DJ and I spent the weekend with Dade at the hospital and we were to care for him like we would at home on our own.  That Friday, the discharge planner met with us and the respiratory therapist came to teach us how to use the oxygen tanks, concentrator, and monitor that we would be taking home with us.  He is still on 0.5 liters of oxygen which is very low, but still needed.  Dr. Anderson's nurse, Tracy, also met with us and went over our plan for follow up visits and answered some questions.  I think that is when it became more real for me and I started to break down.  I wasn't scared, but going home was another new normal for us to adjust to and something we had dreamed of for almost 3 months.  Many tears were to follow.  We bunked up for two nights in the NICU and realized that our days of sleeping through the night were now over.  While he was in the hospital, we didn't have many nights of sound sleep, but definitely had more than we were about to.
Then...
Monday October 27 arrived.  It was a beautiful day about 65 degrees.  DJ's parents came up the day before so that they could help us get things loaded from the hospital and to witness this miracle making his big trip to our home.  DJ's mother made Dade's going home outfit and it was perfect! Alecia helped get Dade dressed one last time.

His nurses and therapists came to tell us "bye" and several others had come throughout the weekend.

 I wish there were a way to describe the emotions that we felt that day.  We were so ready to start our life with our son outside of those walls, but leaving our NICU family was pretty difficult. In the beginning, DJ and I had the mentality that if we had to be there for the projected 3-6 months, then we were going to get to know the team caring for Dade and make it as much like home as possible.  We were the most vulnerable we had ever been, watching our son fight for his life. They got to know us very well and helped us get through each day. These people had saved our son's life, taught him how to eat, held and loved him while we were at work, supported us through the scary nights, and rejoiced with us on successful days.  "These people" were our new family and all Dade had known for 95 days!  DJ and I decided early on that we wanted to do something small to thank the NICU staff and give them something to remember Dade.  Our last few days, DJ and I gave out "Team Dade" shirts to those that had been instrumental in helping Dade get so far and helping us GO HOME! We took pictures, we hugged, we cried, we said "Thank you"  again as though it was enough for all they had done and taught us.

DJ and Christie, the discharge planner, made sure the car seat was set up correctly for Dade.

We took a walk over to the pharmacy to get Dade's medications and she showed us the two clinics that we would be going back to for follow up visits.

When we got back to Dade's room, that was it.  It was time.  It was a breathtaking few minutes of us taking our last walk down those long halls of the NICU on the 6th floor.  We had been there everyday for 95 days.  We knew other parents, the nurses, assistants, clerical staff, therapists, doctors, etc. and we were saying "bye" to them one last time.  DJ put Dade in his car seat and I grabbed a few things. We were surrounded by a few of the nurses and headed out!  We were stopped at the nurses station to get hugs and well wishes.  He was one of the miracles that remind them why they do what they do.

We rode the elevator down to the first floor and headed out of the building that we knew as home.  It was beautiful and yet surreal.  

Our nurse, Alecia, didn't leave us at the doors.  Thankfully, she took the trek with us to the car.  She had taken care of Dade most weekdays and some weekends since his ECMO days.  They were best buddies and she's the main nurse I blame for him being so rotten!  She would hold him while charting on the computer and would work late when needed to stay with him.  There's no telling how many times I'd check in with her while at work or how many questions I asked!  We got to the car where we thanked her again and I squeezed her like I'd never hugged anyone.  She had cared for our son in a way we couldn't ever repay.  She was now family.  Dade was strapped in and we were ready to head home. 

Before we got out of the parking deck, Dade fell asleep!  It was so sweet. I was in Heaven sitting next to him in our car.  When we got home, my Mom was there waiting on us.  She had stocked the fridge with groceries and was excited to welcome him home with us.

We have been a family of 3 since July 24, but now we were finally under one roof! I remember sitting on the couch and just crying.  I simply couldn't believe all that Dade had been through and accomplished. Now, I could hold him in my arms in our home!

I'll be honest, the first week or two was very tough. We were learning even more about Dade and attempting somewhat of a schedule for our sanity. We were feeding him twice in the night and were very mindful of how much he was able to take in.  If Dade didn't gain weight, that meant that we would need a feeding tube placed.  Dade has had some pretty rough reflux since he was in the hospital. We've had to have more medications and try some home remedies to get it under control.  It continues to get better and helps him eat more.  Both of our mothers have come to let us get some sleep in the night or early mornings. This has been extremely helpful.

  

If I hadn't mentioned before, DJ and I both have been home with Dade this month.  We both go back to work on December 1. Our employers have been nothing but supportive of our situation and time needed with Dade for this adjustment. 

DJ and I had picked out a wonderful daycare that we were excited about, but with Dade's condition, daycare is no longer an option for a long time.  Our mothers will be caring for Dade a week at a time while DJ and I work.  This is the biggest help for us!  I know how close I was to my grandmothers and I am excited for Dade to have the same.

  

We have seen our pediatrician twice and Dade is now up to 12.5 lbs.  He was 11.3 lbs when we left the hospital.  Needless to say, we won't be needing that feeding tube! Our Chunky Monkey is eating well and thriving.  Today we  met with our pulmonologist, Dr. Lozano, and we see Dr. Anderson tomorrow.  We will keep you posted on visits!

Home Stretch

First of all, I apologize for the drought of new posts the last few weeks.  Tara and I both have gone back to work, so in the infinite struggle to make our "To-Do" lists "To-Done" lists, the posts have suffered a bit.  Dade, however, has had no such struggle in taking care of his business.  He's kept us on our toes and has been checking things off along the way!

Dade had three main tasks to take care of as we moved forward: 1) Wean off of the narcotics he's been on since Day 1 and the methadone that helps him with withdrawals, 2) breathe well on a regular oxygen cannula after coming off of the ventilator, and 3) eat and gain weight.  We're almost 100% through that list.  Dade received his last dose of methadone today (he was practically off of it already because the dose was so small), he's been rocking along on his oxygen cannula at 0.5 liters/minute, and he's found his inner Tasmanian Devil - Dade is eating 8 times a day and taking between 2 and 3 ounces pretty regularly!

We did have a little hiccup last week when the little guy started losing weight over a few days, but we're moving in the right direction again.  He's had to fight some significant acid reflux as he's started eating more.  CDH babies are renowned for their reflux, and little D has been no exception.  It will sometimes hit him hard while he's eating, which understandably makes him want to stop because it hurts him so badly.  He wasn't eating as much as a result; hence the weight loss.  The docs have since upped his dose of Prevacid that he's getting to counteract the reflux, and so far that seems to have done the trick.  Dade is more frequently on the 3 oz. end of the spectrum and has been gaining back some weight over the last couple of days.

Happy Tummy = Happy Baby

One of the biggest things to happen since we last updated actually just came about a few days ago: we've moved rooms again.  This time, we've moved to a pre-discharge room in the back of the NICU... and that means exactly what it sounds like it means!!!  It's so overwhelming to think that we're closing in on this point so relatively quickly.  Way back in April when Dr. Anderson told us to expect 3-6 months, we fully expected to be on the 6 month end of that range.  Thousands of prayers and 3 months later though, here we are quite literally in the home stretch!  While nothing is set in stone, it looks like we'll have Dade home... really, really home, in his bed, in our house... in early November.  We're excited to be headed that direction, but we also don't want Dade to be at Children's a day less than he needs to be.  We'll continue to take it slow and do what we need to do.

That's it for now, but we'll keep you posted on our path home!  As always, thank you for your continued support and prayers.  We love you all!

"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!