On Valentines Day of 2003, I found out I was pregnant with my fourth child. In the past, I had relatively “easy” pregnancies. This time, not so much. I was swollen from head to toe (to the point my ankles looked like someone’s head) and I just had that “something’s not right” feeling throughout my entire pregnancy. Each time I went to the doctor, they would reassure me that all was good. I still just couldn’t shake that “gut’ feeling I had.
On October 14, 2003 I went to the hospital to have my labor induced. This wasn’t anything out of the ordinary for me, I had always been induced and delivered within 30 minutes START to FINISH. (My doctor always worried I wouldn’t make it to the hospital in time, so inducing ensured I’d BE at the hospital when my child was born). As my labor progressed, I KNEW something was off. It had been nearly three hours and I hadn’t delivered… I had to keep re-positioning because CJ’s heartbeat was dropping, and things were just very off with the whole experience. Finally, a bit later, I delivered CJ. As always, the nurses gasped with “It’s a girl”, “she’s so pretty”, ect… When they handed my daughter to me, I first noticed she had a FULL head of hair. All my children were bald when born! She had my Mother’s hair. She looked just like my Mother! Then, my heart stopped beating… and my journey began!
CJ was purple/blue and ashy grey. Her eyes told me she was in trouble. BIG trouble. I immediately told the nurses that something was wrong and made them take her from my arms. They rushed her to an oxygen tent they had nearby. They poked/prodded her all over, stuck tubes down her throat and all while she let out “cat-like” cries. She was only 4.3 pounds, but looked like she weighed less than 1 pound. She fought the nurses like she was a 200 pound grown man, which led the nurses to name her Sassy, and that is what they’d call her for the next four months.
They quickly rushed CJ to the Neonatal Intensive Care unit, where doctors began to work with her. I wasn’t able to see my daughter for hours. I finally had my fill, threw on my jeans and walked my ass down to the unit my daughter was being cared for in. (No, my doctor wasn’t happy, but he KNEW me and knew to stay out of my way). The only thing doctors could tell us at first was that she hadn’t developed to full term. Her lungs were under developed and she was being put on oxygen. She was critical, but stable.
(Here is where a little back history comes into play. My Mother had passed away from a massive heart attack two years prior to my having CJ. She was not only my Mother, but my best friend, and partner in crime. She had held my hand and been my punching bag throughout every pregnancy/labor I’d had. My entire pregnancy was an emotional roller coaster for me without her. My Mother’s name was Connie Jo. She HATED her name, and my Dad always called her CJ… hence, my naming of my daughter).
Over the next few weeks, CJ had several issues, and a major one being she couldn’t really take a bottle well enough to take in more calories than she was burning. They often had a tube down her nose to help with getting the proper nutrients, while still trying to bottle feed also. The doctors finally came to us and recommended that CJ needed a permanent feeding tube put in. I remember being so scared. I’d never dealt with anything remotely close to a feeding tube, I was terrified that I’d forget something, do something wrong, or just screw it up somehow. But, I was fortunate… I had an amazing nurse named Linda. She didn’t allow me to focus on the actual tube, but more on the positive’s of having a feeding tube. Like, BURPING! It was the coolest thing. Open the top of the feeding tube and all the air suddenly left CJ’s belly. (If you’ve ever had to try to get out the last stubborn burp from a fussy baby… you get JUST how cool this really was!)
Linda became CJ’s primary nurse, and I quickly learned that she was the “churchy” version of ME! She was kind, loving, and compassionate. She was also stubborn, hard-headed, and determined. She cared for CJ as if she were her own, and I loved her for that. We soon became “friends” from all the time we spent together. I learned that her Father actually had heart disease and wasn’t doing very well. It was around this time that we learned CJ had several holes in her heart. She was still only 5 pounds, and doctors required her to be at least 8 pounds before they could perform open heart surgery to repair the holes. It was a daily battle, trying to get her to gain weight. She NEEDED this surgery.
Though CJ had a feeding tube, was on oxygen, and had heart issues… the doctors still felt something was just “off”. They wanted to do some genetic testing. If I live to be 100, I don’t think I will ever forget the day we were given the results. Our nurse practitioner, Monica came into the hallway with a tear-stained face. The other doctors could barely look us in the face as they told us CJ had been diagnosed with a syndrome. My heart started pounding, the walls felt like they were caving in on me, and my knees began to buckle… They explained that CJ had Trisomy 9, mosaic syndrome. Of course, our first question was… what is that? Monica quickly chimed in that she’d spent all morning/afternoon researching it and had found very little on it. From their research, there were only 150 cases of this syndrome in the WORLD. She handed us a few sheets of paper she had printed off from the internet, explaining the syndrome. The basics of it? It’s closely related to Downs Syndrome and life expectancy was not outside of infancy.
I remember having a thirst for more knowledge. I went back home and we began to research. We too, had a difficult time finding actual information. But, what I did find, was parental support groups, ect. Most of them didn’t have children with the same syndrome, and that was very frustrating for me. I did find ONE woman who had a 3-year-old daughter, but all research/contact had stopped. I had no way of knowing if the child was still living or passed away. This, at least gave me hope that I’d have more than ONE year with my daughter.
The next few months were a constant back and forth from home to the hospital, and back again. CJ was this strong, loving, and stubborn child. She had mysterious bouts with “gagging” and often turned blue in my arms, she’d quickly have to be resuscitated. It was horrible to watch, so helplessly. I often wondered if I would ever be able to love her without fear? Or would I be faced with having to bury my child? I quickly shook that thought from my head and refused to even entertain that idea. It was just too much to even consider. My daughter was my Mother’s namesake and she was a fighter!
In the unit CJ was at, the doctors rotate after a certain amount of time with a child. We had such an amazing doctor in the beginning, who really valued my Mother’s intuition and always listened when things just weren’t explainable. She thought outside of the box and knew that CJ was that one in a million kind of child. When we were given our next doctor… it was a slap in the face of just how cruel this world could be to CJ. He quickly wanted to discharge her. He felt the place she needed to be was a children’s hospital. I believe his words were something like… your child is going to die. She should spend those dying days being kept comfortable, not taking up a bed where we can actually help a child. He was a foreign doctor and had absolutely NO USE for my outspoken ways and lack of “give a damn” for how he felt about a woman with an opinion. It was the first time that I had seen CJ’s Dad lose his temper. I had always been the hot-tempered one, but I thought he just might choke the life out of this jackass, and I might actually have to STOP him from doing it… only because I needed his strength for our daughter… otherwise, I’d have probably smiled as he choked the life out of that man. I’d never been so hurt, angry, and bitter in all my life.
As this jerk of a doctor was rushing to discharge my daughter, she had a terrible episode and we almost lost her. Her previous doctor stepped back in, and she immediately determined that even though CJ was only 7.8 pounds, we couldn’t wait for the open heart surgery any longer. She called in the heart surgeon and they began their hospital meetings to prep all of the staff. The surgeon explained that within a few days, they would perform the surgery and repair the holes. They said that the surgery would not affect any other part of the body, but the heart and she should recover quickly. Boy, were they wrong!
During CJ’s surgery, they lost her several times. The surgery took 3 times as long as it should have. It was one of the longest days of my life. When she finally came out of surgery, the surgeon wouldn’t even look us in the face. He looked at the ground as he explained how much difficulty they had and that there was one hole that couldn’t be fixed. It was more dangerous to try to get to it and close it, than it was to leave it alone and allow it to possibly close on its own in time. When the nurses got CJ back to her room and hooked up to the ventilator, we were finally allowed to go in and see her. She was SO swollen and pale. They kept her sedated, trying to give her body some extra time to heal. Each time they would try to bring her out of sedation, she would flat line when anyone would touch her. Her organs weren’t working properly, and the doctors were baffled. Her entire body was reacting to the surgery… not just her heart. It was something they hadn’t ever seen before. Why were we shocked? We should have known… she’s that one in a million kid.
About a week later… she was taken out of sedation, and started her miraculous recovery. It was like, once she had the rest she needed… she was off the ventilator, organs were back to normal, and she was about to see the outside world for the first time. We were so excited, yet so terrified of taking her home. She would still be on oxygen (low levels) and have a feeding tube, but she would be at home! We spent one night in a “family” room at the hospital to make sure we were able to work the feeding pump correctly and give her med’s correctly… and the next day… we stepped outside the hospital doors with our miracle girl.
I won’t say its been a cake walk since bringing her home, but I will say that God has been very kind to us. He has been kind to my angel baby, and has allowed her heart to completely heal itself! She was able to eat on her own and have the feeding tube removed by the time she was 3, and her lungs might have some permanent damage – but she can fully breathe on her own, without any assistance. She will be ten years old in 35 days and she can run, play, and laugh. She attends public school, and is loved by anyone who comes in contact with her. She is the funniest, most stubborn child you’ll ever meet and I thank God for her EVERY day. She is the oldest living child with Trisomy 9, Mosaic Syndrome that I am aware of. If anyone reading this knows of anyone with THIS syndrome, please… send them my way. I’d love to chat with them.
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