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!
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.
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