Wednesday, February 6, 2013

Feb. 6- CHD Awareness-Colt's Story

My husband and I were thrilled to find out we were expecting after trying for 2 years. We were over the moon when we found out we were having a son when I was about 22 weeks along, we had a daughter, and a son would make our family complete! Every time I had a check up my doctor told me the same thing, he is perfectly healthy and he had a good, strong heartbeat. I was so excited, getting his nursery ready and having his baby shower were leading up to what I thought would be a normal birth. When I went in to be induced on May 26, I would soon find out just how wrong I was. Jakob Colt Frisbee was born at 2:39pm after 8 hours of intense labor. I knew something was wrong as soon as he came into the world, he was not crying and his hands, feet and nose were bluish looking. The silence of the nurses and the doctor were also a dead giveaway. The cleaned him up and he began to cry, they immediatly hooked him up to a pulse-ox meter so they could watch his stats, which they told me could be low because he might have gotten some fluid in his lungs while he was being born, they let me and my husband hold him and feed him and everything seemed ok until they moved me into a regular room, but Colt did not go with me he was took to the NICU for further observation due to his oxygen stats being in the low 80's. We began to grow impatient for them to bring him into my room so the rest of the family could see him, so my husband called out nurse and asked her when we could see our son, she said a doctor would be coming in to talk to us soon, and that's all she could say right now. My heart sunk, my mothers intuition knew something was terribly wrong with my new baby boy. As promised, the doctor came in and in a very matter of fact way told us that they believed our son had a heart defect which was causing his oxygen to go below normal but they needed to transport him to Children's Health Care of Atlanta Egelston because they were the best pediatric cardiac hospital in Georgia and our local hospital could not deal with such complex issues. Only hours after giving birth to my son, I watch him and my husband leave via. Angel Care to Atlanta, GA to see what exactly was wrong with him. I was made to stay in the hospital until the morning so my doctor could give me the ok to leave and make the 2 hour drive to Atlanta. Once there I was met by my husband who said very little and looked rattled with sadness as he clutched some papers in his hand, he lead me to the cardiac ICU where our son was being looked after by a team of nurses and doctors around the clock. The sight of him with IV lines and tubes going into his little body was almost too much for me too handle. A nurse lead me over to him and got me a chair, I cried as I stroked his tiny hand. A doctor came over to me and began telling me what was wrong with my son. It's a very complex defect he said, it's causing his blue and red blue not to mix properly which in turn was causing his oxygen to be lower then a normal baby. He told me it was called double outlet right ventricle with transposition of the great arteries, with a straddling mitral valve and a non-restrictive VSD. I had never heard of such a thing before, a nurse began explaining it to me in terms I could understand which I think only made it worse after I realized the severity of it. What can be done I asked thru my tears, well the doctor which I now know as Dr.Wolf, said we aren't sure just yet, his heart defect is complex we are looking at a few options, one is an arterial switch and the other is called a Glenn shunt. We want to monitor him for a while and see how he does breathing on his own, we may end up not doing a surgery until he is older and bigger. He spent the next 3 days in the cardiac ICU, and was then moved to the cardiac step down unit, where he spent 3 more days. I was sitting in his room holding him when Dr.Majhd Machol, a doctor who I just love and think is the absolute best at what he does came in, he explained to me that they would be sending Colt home to get bigger and a little older before they preformed the first surgery, which surgery that would be they still did not know. I was so happy, but going home meant a lot of responsibility on mine and Robert's end. They set us up with Dr. Jane Todd a cardiologist in our home town that Colt would have to see once a week, he was on meds for swelling, acid reflux and blood pressure, he also required breathing treatments once or twice a day. I didn't care all I knew was that my husband was on his way down to Atlanta with my daughter to take baby Colt home for the first time since he had been born!
Once home we had a wonderful homecoming with balloons and family ready to greet baby Colt. We showed him his room for the first time, and I got to bath him for the first time and put some of HIS clothes on his. I was so happy, the sleepless nights that came along with having a newborn didn't even bother me, I would sit up all night with him if I had to, anything was better than being in that hospital. The next couple of months he did well, he was able to celebrate my husbands, mine, and my daughter's birthdays, all which were in July. On July 30, I got a call from one of his doctors, Dr. Martha Clabby, she was calling to tell me that his cardiologist here in Dalton was a little concerned with Colt's visit the previous day where his oxygen stats had been in the low 70's, they wanted Colt to be down at CHOA first thing in the morning for a cardio cath, so they could see why his stats where dropping. I was so worried, thinking this might be it, time for the surgery. Robert, myself, Colt, and my in-laws made the 2 hour trip back down to Atlanta and this time was way more emotional for me that last time, I cried the whole time, while we were checking in, while we were waiting to be took back to the cath lab and while Robert and I waited with him in the room while a tech did a EKG and ultrasound of his little heart. Colt was tired and cranky because they wouldn't let him nurse and that made it worse on me. They doctor who was doing the cath came in and explained everything to Robert and I, and whisked Colt away. 3 hours later they called and said everything had went good and we could come see him. He was pale, and they telling us he was going to have to have a blood transfusion, so we signed the papers, his breathing was hard and that worried me, I kept looking under his blanket at his chest which looked like it was doing so much work just to take a single breath. They then informed us that Colt would be staying overnight because they wanted to observe him for 24 hours. I broke down because I didn't know if I could handle being at the hospital by myself again, my husband, who was the only one working, had to go back to work the next day. With a heavy heart I said my goodbyes to my husband and in-laws and settled myself and Colt into the all too familar cardiac step down unit. The next day the doctors that I had became so familiar with came and to tell me the plan for that day, a procedure called a balloon atrial septostomy, what that meant was that they would go in through the IV line from the cath the day before and take a wire with a tiny razor blade and go thru one of the holes in Colt's heart to make it bigger so more blood could mix, hoping to by him a little more time before the surgery, they still wanted him a little bit bigger and older. They took my baby away for the second time in 48 hours and I was alone in his room, with my thoughts, which can be a bad thing for me. 3 hours later he was back, asleep but with good news, all had went well with the procedure and he oxygen was staying in the mid 80's and he wasn't on any oxygen at all, that was with him breathing on his own! I constantly sat and watched that oxygen moniter for the next 3 days, it became a love/hate relationship, every time it would get close to 81 or 80 I would say a quick prayer that it would not go below 80! Finally he was able to go home, they told me the next time they say me it would most defintely be for surgery, they keep telling me that this was only a temporary fix. We went home and resumed our "normal" life of cardio visits every week and his round the clock meds, hoping that it would be at least 6 months until we had to go back to CHOA for the surgery. We were wrong again.
On August 31 2011, we were at his cardiologist in Dalton for a weekly visit. The nurse who was checking his oxygen levels looked worried as she read the numbers on the meter, she went and got Dr. Salee. Colt's oxygen was at 61, they said he could not wait he had to go back down to CHOA immediatly via ambulance. So we were off to Atlanta again, I called my family to let them know I would call them as soon as we made it down there and I would let them know what they decided to do. Once down at CHOA Colt was back with the familar nurses and doctors of the cardiac step down unit,the doctor was concerned his oxygen was staying in the 60's and he said they would feel more comfortable if he was in the CICU, I lost it and broke down at the thought of having to spend the night in the waiting room without my baby, but whatever was best for Colt. The next morning I waited on news from the cath lab, and the doctors, hoping that they would decide something for sure. They did. Around 5 that evening after my in-laws had came down to keep me company his doctor told me that they decided surgery could not wait and he would be having his first surgery a Glenn bi-directional shunt the next morning at 6am. I was relieved and devistated all at the same time, I called my husband and parents and told them to get down there as quick as they could. They did and we were all together praying and crying for Colt's safety during surgery, The next morning I was unable to hold him because he was hooked up to so many cords, and IVs. My husband and I walked with him to the door of the OR, kissed him and said our "see you laters". We waited in the surgery ICU, and 3 hours later his surgeon came out to tell us the surgery had been a success and he was resting in the Cardiac ICU and we could all go see him later. We finally got to see him about 2 hours later, he looked so pitiful with his newly bandaged incision and what seemed like millions of IVs and tubes, and a ventilator running thru his tiny body. I stroked his hand and whispered softly that Momma was here. I wanted to take all his pain away and make it my own. My family came in to see him and once they were satisfied that he was going to be ok they all made the drive back to Dalton, where we live. My husband and I stayed and slept in the waiting room until 3 days later he was moved into a regular room so we could be with him 24/7. He was doing so good after such a major surgery, they were letting him bottle feed again, and he was smiling a little. My husband and I figured we would be in the hospital for a few more weeks but much to our surprise only a week and 4 days after having surgery Colt was given the Ok to GO HOME! His doctors were so pleased with his progress, his oxygen was staying in the high 80's low 90's and his incision was healing good. We were a little scared to pick him up seeing as though his breast bone had been cut, but we went thru an after surgery class that told us how to care for his incision and how to and not to pick him up. We also left with about 5 different prescriptions. The first week Colt was home was hard, he was cranky and sore, and cried A LOT! He went and saw his regular cardiologist one week later and they were pleased with how well he was doing with oxyegn at 88 and the EKG and Ultrasound of his heart looked good, we went back down to Atlanta two weeks later to get an X-ray of the breast bone and so his surgeon could check his incision. He was very pleased with how well he was healing and told me and my husband we were doing such a great job with him at home and they hoped they wouldn't have to see him again until he was 3 or 4 for his next surgery which will be the Fontan.
Today Colt is a happy and playful 20 month old. He loves to eat, play with his big sister, and watch Elmo. We have learned how precious and short life can be and now we are so much stronger as a family because of what we have been through. I never take anyone or anything for granted anymore.

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