119 Days!

With tears in my eyes, I calculated how many days that we have been out of the NICU. It has been 119 days since we took our little angel home.  These days have been filled with many firsts, tears, laughter, sleepless nights, and Dade's first holidays.  He went home right before Halloween and enjoyed his first Thanksgiving and Christmas at home.  We enjoyed watching many football games together and times with family.  Thanksgiving was spent at LuLu's (Tara's Mom) and then Pop came over that afternoon to visit.  It was a quiet and relaxing day with lots of food!

We enjoyed watching the Iron Bowl at Pop's house with him, Aunt Gigi, Uncle Richard, Bubba J, and our cousins.  Auburn didn't win, but having him with us to watch it made the outcome not nearly as important.

 I have to be honest, Christmas was hard this year! DJ and I were both back to work full-time, we were adjusting to a new schedule with Dade, sleeping maybe 4-5 hours per night, and then shopping, decorating, and wrapping had to fit in there somehow. Thanks to our mothers and DJ's grilling skills, I didn't have to worry about cooking. They did it all! It was amazing! We were excited to host DJ's family for the first time.  DJ grilled an unreal tenderloin and his mother cooked the rest of the meal and brought it up to our house. Both of DJ's sisters and their families were able to come. To say it was a perfect Christmas Eve would be an understatement.  We had the sweetest day together opening gifts, the cousins playing together, and the siblings catching up.  There were times I would look over at DJ and we both had tears in our eyes. It still hasn't fully sunk in sometimes that we are home and Dade is too.  He was home for Christmas and it was a dream come true.

On Christmas morning, DJ, Dade, and I sat in our pajamas by the fire and lit Christmas tree.

We were lazy and just soaked up the morning and its meaning.  It was honestly perfect. There have been so many times that DJ and I have asked God, "Why us?" Why us in a different sense than you'd assume. We saw tragic stories in the NICU and we would ask God, "Lord, why are we the blessed ones that get to keep our son?"  It's something that even on day 119 we don't take for granted, and I pray we never will.  There are several CDH blogs and sites where even weekly, you can see families grieving the loss of a child.  It's heartbreaking. It makes my stomach drop and brings tears to my eyes because it could have been us. When the nurses say that they have prayed over Dade and begged for the Lord "not to take this one, please," you know that he is a miracle in every sense of the word.

Christmas night we went to LuLu and PeePaw's for a wonderful supper and opened gifts with my sister and her family.  Later that weekend we went to Pop's for our third Christmas gathering with the rest of the family.  We have precious memories of our time together and celebrating Jesus's birthday.

I laughed this year when friends kept asking what our plans for New Year's Eve were.  I was only off of work Christmas Eve and worked the rest of the holiday season.  I got sick New Year's Eve afternoon.  It broke my heart. I came home from work and had fever. I quarantined myself in our bedroom while DJ had to care for Dade alone.  My mom went and got us all Tamiflu just in case it was the flu.  I stayed in bed and rested. At midnight, I sent DJ a text telling him "Happy New Year!  I love you." Cheers to 2015! I am hopeful for a brighter year.

January 16, MLK Day, DJ and I were both off of work and had a good day together at home with Dade.  That evening, DJ's mother came up to take care of Dade for the week.  We all went to bed, but Dade was up every 15-20 minutes.  He was very uncomfortable, had a fever, and started vomiting. He was crying like we had never heard him before and we knew something just wasn't right.  We checked his oxygen levels and he was breathing fine, but had a fever between 101-103.  We called our pediatrician and ended up taking Dade to the Children's Hospital ER just to make sure nothing was wrong.  I agreed that we would feel better knowing that he was checked out and really ok.  DJ's mom helped us get him packed up and DJ, Dade, and I headed downtown to the hospital.  The ER was empty and they got us assessed immediately.  His fever had dropped to 99 and he was laughing by that point.

I definitely had that moment that I regretted even going and knew they thought we were crazy for bringing him in.  Unfortunately, with Dade's issues, this could have been a stomach bug, the flu, or something as severe as a bowel obstruction or reherniation. Watching Dade get stuck, get a catheter to test his urine, and have x-rays was much harder on my heart than ever before.  As a newborn in the NICU, Dade wasn't very alert.  He was sedated, so little, and with his situation, a lot of things were "life or death" so anything that needed to be done, I handled better.  At almost 6 months old, Dade was much more alert and he was looking to Mama and Daddy to make him feel better and protect him from the pain he was enduring.  My heart was broken.  We were released from the hospital two days later.  His x-rays of his abdomen and chest did look like there something back in his chest, but Dr. Anderson didn't feel like he had truly "reherniated" and that whatever WAS there wasn't causing significant issues at the time.  They didn't want to put him through more testing or any surgeries until there was just cause. On the bright side, Dade met his first clowns before we left to come home!

January 24, Dade turned 6 months old!

It took my breath away knowing that he is half way through his first year!  There is so much that he has had to endure and so much yet for him to experience and learn.  I smile in awe of our little boy. What a gift!!! He smiles like the sunshine and makes the most precious noises.  He laughs and plays, and when he feels good, he is the happiest, most precious little fella.  He is still not sleeping through the night, but the nights are better than they used to be.  He is eating well and loves his food.

Dade enjoys the little bit he has been outside when it has been warm enough.  He lights up when the fresh air hits his sweet face.  He is rolling over and holding his head up well.  His physical therapist visits monthly and is very pleased with how far he has come.  The only thing he is behind on at this time is sitting up. We are working on that and know he will master that soon enough.  We had a wonderful visit at UAB's Newborn follow up clinic which is monitoring Dade as well.  We are so grateful that Dade has access to these clinics and services.  These professionals are amazing and so great with him.  They monitor his weight, height, head circumference, diet, social skills, home environment, etc.  As of February 16, Dade weighed 15 lbs and 9 oz.  He is 26 1/2 inches long and his body is catching up with that big noggin of his.  He is one strong little boy and has quite a grip.  He is a pro at pulling Mommy's hair, glasses, and earrings too.  He lights up when Mommy and Daddy get home from work. Talk about melting our heart!!! He is the best! When Dade's pediatrician assessed him for his 6 month check up, he was very pleased and felt like Dade was "a normal 6 month old." He joked about the fact that his oxygen was probably just for attention because he was doing so well and probably didn't even need it anymore.

We went back to the pulmonologist, Dr. Lozano, on February 16th, and to our surgeon, Dr. Anderson, on February 17th. Dr. Lozano was wonderful as usual and was pleased with Dade's progress.  He has had some labored breathing, which we now know why, but I'll come back to that. Dade has been able to keep his oxygen saturation levels up and they felt like we could begin to wean Dade an hour at a time. We were excited about this because he is moving ALL over the place and it's hard to keep him from wrapping himself in his oxygen tubing.  It sure will be nice to have these tubes gone one day! We are so used to his oxygen that Dade looks funny without it.  We don't even realize that it's not the norm until we are in public and others stare at him.

Speaking of public, it is very rare for Dade to be in public.  As doctors and other CDH mothers have advised, Dade has to stay "in isolation" from fall through winter.  With cold, flu, and RSV season, Dade being in public and in large crowds is just not safe.  This has honestly been very hard for me because I have grieved the lack or normalcy that comes along with the isolation.  I don't mind not being able to go eat dinner with my girlfriends as often.  I miss the fact that DJ, Dade, and I can't go anywhere as a family.  Dade has only been to the doctor's office and to his grandparents' houses. We hope to take him to church in April or May for the first time. Most moms I know talk about being able to finally run to Target without the baby. I completely understand why they'd say that, but in our case, I'd do anything for Dade to go with me to Target or to run a few errands.  It's amazing what little things make us feel normal or like a Mommy.

We were elated with our visit with Dr. Lozano and eager to see what Dr. Anderson had to say last Tuesday.  Dade will always have a chest x-ray when he sees the surgeon so he can thoroughly look at the diaphram, lungs, and see if there has been any reherniation.  Just as we thought in January, Dade HAS reherniated.  What this means is that the synthetic patch that was used to repair Dade's diaphragm has either not been able to handle Dade growing as quickly as he has and has come undone allowing the intestines back into his chest, or there is a tear in the patch somewhere that the intestines have crept back through.  The unfortunate part about this is that Dade will have to have another surgery to repair this. The positive side is that 1) he has still been able to keep his oxygen levels up even with the extra organs in his chest, and 2) right now, it only looks like there are intestines and possibly a bit of the spleen in his chest. Last time, his stomach and liver were in his chest as well. 3) He has still been able to eat well, have bowel movements, and gain weight, despite this finding. 4) This procedure isn't as critical as before because he is stronger, and his lungs have had almost 7 months to grow well beyond what they were when he had this surgery at a week old and on ECMO.  It breaks my heart that Dade has to go through this, and this has been my biggest fear and something DJ and I watch for carefully.  Other CDH Moms have been through this, and before we came home in October, I told the nurse that a reherniation was my biggest fear.  Her response was "Count on it. It's very possible. If it happens, we will fix it." Gratefully, we caught it and we were prepared, but it just downright STINKS.  As of Friday, surgery has been scheduled for the morning of March 9.  Dr. Anderson will be out of town this coming week so it couldn't be done sooner. Obviously this hernia isn't brand new so Dr. Anderson is confident that Dade will be ok until time for surgery.  Our time in the hospital depends on the extent of the surgery that has to be done.  We are hoping that it can be corrected laparoscopically, but we won't know if this is the case until Dr. Anderson can take a look inside. If so, Dade will be in the hospital 2-3 days. If they have to go in where they did last time and do a more thorough surgery, we may be there at least 7-10 days.

As always, we covet your prayers.  I want to be honest with all of you and plead for your prayers on my behalf as well.  I made a joke with friends at dinner the other night and said "I'm just not in a good place." It wasn't a joke...
I'm broken hearted, I'm scared, and I'm tired.  When we were in the NICU for 95 days, it's all we knew and it was our routine. Now, we know life at home and Dade is so happy and funny.  It breaks my heart knowing that this can continue to happen to him over and over. Every parent's mind works differently once they have a child, but there is just no sigh of relief with Dade because we are never in the clear. We have to worry about his ability to breathe, if he has reherniated, if he gets a respiratory infection, keep him isolated in the fall/winter etc.  The older he gets, the stronger his lungs will get and life as we know it now will change.  It's just a rough road and it has finally caught up with this mama.  A friend of mine recently shared her story of depression and fear with her twins who were in the NICU at another hospital the same time Dade was.  I felt like I need to be honest too. It has only come on recently and I hope will get better with warmer weather, a successful surgery, and a healthier "Dademan."  Until then, please pray for our precious family, my heart and mind,  and Dade's surgery March 9th. As he did before, we know he will kick tail again and that our God has him in the palm of his hand.

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!