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Sophie accepting her award, 'best Bossy girl' at sissies bday party |
We brought her home the next day. She was not eating well from the start, but we were sent home. The staff stated that newborns sometimes had to be stimulated to eat. After being home for 2 days and still having feeding issues, Sophie would not eat for nearly 10 hours. My husband Eric and I then brought her to the emergency room. At the ER we were told that she was fine. The doctors exact words were, "Any parent would be happy their baby is sleeping so good". They were ready to send us home. I was not satisfied, I knew something was wrong. I then requested they do blood work, We waited and the blood work came back fine, they did not know what was going on. Her glucose was low, so they were giving her an IV and then started oxygen. Oxygen closes the PDA, which in healthy newborns usually closes within 2 days, this was closing and my baby was slowly shutting down before our eyes. They were ordering a spinal tap, then by the grace of God a nurse practitioner came down and had worked with heart babies before at All Children's Hospital of St. Petersburg. Donna was her name, and I will never forget her taking over and saving my little Sophie's life. She immediately called All Children's and had transport on the way. The special medicine they use to keep the PDA open was not available at the ER, so they had to call and get that also. Transport was in route along with the Prostaglandin. We waited and prayed that our baby would make it. We were told when transport got there, that the medicine was not with them. SO we waited again for the medicine to arrive. As we were waiting we were told that she had a heart defect found on echo, that her body had shut down and they would do everything possible to get her to All Children's safely and stable. After waiting another hour we were told the medicine had arrived by transport and they we giving it to her. She was then transported to All Children's. We were told no air lift was available so we had to have her driven one hour to the hospital.
As we arrived at All Children's we were met by one of the Intensivists, Dr. Nichter. He told us they were doing everything possible to save Sophie's life. It would be touch and go for months. We were also told that day by the cardiologist, Dr. Huhta that Sophie had tricuspid atresia(Hypoplastic Right Heart), interrupted aortic arch, ASD and VSD. He told us it was uncommon to see both complex defects together. We were brought back to see Sophie as she was laying there with about 15 drips going. She was on a paralytic and heavily sedated. They told us her kidneys had taken a hit and they were trying to get her numbers lower and more urine out. She slowly retained fluid and was so swollen and was eventually put on dialysis. She also had many infections while waiting for her surgery. They could not do her heart surgery until she was infection free. She had numerous infections, from staph to urinary. One of these infections caused her to have surgery on her right arm, because the infection had gone all they way down to the bone.
We were told by Dr. Jacobs that he would not do heart surgery until she was less swollen and infection free. She was slowly taking off fluid from dialysis but he was also uncertain about going into surgery on dialysis. The original plan was to get her to a stage 1 Norwood, but she was too sick. They said if the Norwood was performed she would not live. They then came up with a plan, to get her to to the next stage, the Glenn. They would perform the Hybrid (place bands around pulmonary arteries, to lessen flow to lungs) and Dr. Giroud would place a stent in her PDA . This would mean she would not have to go on the heart lung machine, which she couldn't because she was too sick and her kidneys were not working. So the plan was set, now we would wait and wait. On November 8, 2005 Sophie was finally having her Hybrid. We were so anxious, as we had waited for some time. We were also scared to pieces. We were told it was a 50-50 chance she would survive this operation. She was then in surgery for about 4-6 hours. Dr. Giroud had placed the stent and Dr. Jacobs had placed the bands. It was successful! We were all so very happy and grateful! Now we were on to the next step, getting her of the dialysis. That day she came out of surgery her kidneys started working. We were all amazed! Sophie was still on the ventilator for sometime. That was another step in recovery: from being on the vent so long her lungs took a hit and she was dependent on the vent for awhile. We eventually got off the vent and we were able to go home on Dec. 21, 2005. The doctors had all discussed her staying until next surgery or letting us go home. We were sent home, YEAH!! We of course went home on 13 medicines and she had a G-tube placed since she would not eat by mouth.
Getting home was the best feeling in the world, having our family together again. Not living at the Ronald McDonald anymore and having normalcy. The Ronald McDonald is a blessing, but we were happy to leave, of course. At home Sophie started gaining weight and we started therapies and just waited on her next surgery. She had saturations that were always lower, so we knew the next surgery would come quickly. We went in on March 1, 2006 for her cath and had her Stage 2, Glenn and modified Norwood on March 3. They also had to take off her bands and take out stent from the PDA. This surgery was also a bit more risky. She was in the operating room for 9-10 hours. Finally, Dr. Jacobs came into the waiting room and was clapping. He is a truly amazing surgeon. He told us everything went smoothly and was successful. He also told us, she would be out of hospital in 10 days.... This is Sophie we are talking about. We knew, no 10 days. I did have in my mind about 1 month. Of course, things didn't work out that way we were there for 2.5 months. She again had setbacks and with her chronic lung disease, she was again hard to get off the ventilator and had clotted her left pulmonary artery. We learned this in the cath lab. She was in the cath lab about 8 times during that hospitalization and had another open heart surgery in April. Her left pulmonary artery was reconstructed. They were happy with that surgery, but later we found that it was wide open but no blood was profusing that left lung. We have done lung profusion scans and catheterizations to see if the flow has came back. Last time, it was at 11%. The doctors decided the best medicine for her, was to go home, hoping that the left lung will relax and she will grow. She is growing and her sats have been in 80's. But that does not tell us anything.
So we were sent home on May 15, 2006 . We have been home and Sophie is doing great! She's gaining weight and her heart function looks good. She truly is a miracle and we thank God every day for her. We just have to pray and have faith that her left lung gets some more flow.
The recent cath on Oct. 10, 2007 showed the aortic arch is compressing against the LPA. Sophie will have another surgery in March to reconstruct the aortic arch and LPA . We hope this helps to get more blood flow to that left lung. Her last stage 3 surgery, the Fontan will be six months or more after that. Having both lungs for the Fontan is optimal.
Thank you for letting me share our story. As you read in the beginning we did not know Sophie had a heart condition. By bringing more awareness and letting our stories be told we can help others gain knowledge and acknowledge the signs of congenital heart defects, so that hopefully another family and innocent baby will not have to go through what my daughter and our family has. Love & Light,
