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!