Our Letters of Hope

HI my name is Amanda Jones and this is my story. I have been married for 7 years. We have a son that is 5 and a daughter that is a year. We decided after our son that we want to have another baby so when he was about 1 1/2 we started trying again. We got pregnant with him fast but, seem to be having some trouble this time. So I went to the ob and was diagnosed with PCOS. That is way we were having a hard time getting pregnant. I was put on clomed and after 4 months finially in September 2008 I was pregnant. I had a great pregnancy. A 18 week ultra sound that showed nothing out of the ordinary. The rest of the pregnancy was very normal. Than on June 8 2008 we welcomed a 6lb. 12oz. baby girl..We were so happy. We decided to name her Carlee Jo. So beautiful and looked so healthy. on Monday June 9th they told us she had a heart murmur that would take care of its self.The pediatrician came in Tuesday the 10th of June to get us ready for discharge. So off they went with to the nursery for a discharge exam. I was starting to get a little worried bacause it was taking for ever. But hospital time always does. The next thing I heard was code 333 over the intercom, having worked at a hospital for a few years I know what that meant it was not till a team of doctor come running passed my room that I realized that something was going on in the nursery. So for a second I thought is it my baby, no she was fine. Than I came in team of doctor and I know than something was very wrong. I was so scared sitting there by my self waiting for all of them to pile in the room and give me the news. That's when they told me my daughter has a heart defect call Hypoplastic Left Heart Syndrome or HLHS. This meant that the left side of her heart was very small and not able to pump blood. I felt my heart hit my feet that is the worst news that a mother can hear that you have a sick baby that my not live. I was not sure what to do I had the day planed. Go to my moms, get pizza, Busia was going to come visit and now I don't ever know if I will see my baby alive again. There is no words to enplane how I felt. I call Jason and he was on his way. Than in called my Dad he don't worry its probably not that big of a deal. The doctor at this point had not told me much about what was going to happen they wanted to wait for Jason to get there. Once he was there they enplaned her very serious heart defect.They said she would be flew to Ann Arbor, University of Michigan. Were she would undergo the first of three surgeries. That we had a long road ahead and should plan to be there from awhile. That our baby was very sick and there was a chance that we may lose her. At this time it still has not sunk in your in such shock you can think. They told us they would take us up the peds icu so we could she her before she left. Nothing could have prepared me for what i was going to see. My baby girl all hooked up with wires and machines trying to keep her alive.It was so hard to look at her a not be able to help her. They let us see her a few minute than told us we should go home and pack our bags and head to Ann Arbor. She would be taken there by life flight. Leaving her there was the hardest thing I have ever had to do. All I could think about was am I going to see her again. This was not my plan to have to leave the hospital without her. But I know I had to if I wanted to get to Ann Arbor to see her again. So we reluctantly head for home we had stopped at my moms to tell our son what was going on and that we were going to have to leave him for a while to take care of his sisters broken heart. When we arrived at her house I just stood out side the door and cried I could not go into the house with out her. I finally made it in and we told our son what was happened.That was hard I had one baby that I did not know if she was doing to live and I had to leave my other one behind as we headed for the unknown. We packed our bags make some arrangements for our son, our dogs, and our house. We headed to Ann Arbor with my sister-in-law and mother-in-law. It was about 10:30pm when we got to Ann Arbor. We were taken to the PCIU or Peds Cardio Intensive Care Unit. We entered her room and it was so over whelming I can not put it into words. Her little body laying on that big streatcher with so many wires and tubes it was hard to even see her. They were doing a echo of her heart to see what they were in for. We were told that she would undergo her first surgery in the next few days. The steady hands of Dr. Bove would be doing it. We soon learned that he was one of the pioneering Doctors for treating this defect and one of the best. I guess it help us breath a little better knowing she is in good hands. So over the next few days we tried to get settled in at the Ronald McDonald house on campus at U of M. We had to wait for a surgery date. The first stage of the surgery is called the Norwood. This is the re routing of the blood vessels, place a shunt and remove the wall between the two upper chambers. We found out her first surgery would be June 16th. At this point she is stable with all the meds and on a vent breathing for her. So for the next few days we sent as much time with her as we could. We were unsure how much time we would have would she make it thought this.As surgery date was fast approaching the harder it was. I was so in love with her and just could not bare the thought of her not being here. The day of surgery came, we had to be at the hospital at 5 am if we wanted to hold her before surgery this would be the first time I had got to hold her in 6 day but it felt like a lifetime. I did not want to give her up what if that was the last time I got to hold her.All the thoughts running though your head a just unreal. But I know I had to be done and this was her only chance to survive. About 6:30 am they came to get her and told us every thing was going to be fine but its hard to believe that. They said the surgery would take 4-6 hours. It seemed like days. They would come and give us up-date, let us know when she was on and off bypass. That can be the hardest part of the whole process. After Dr. Bove was done he came to give us his up-date. He said all was fine she did well and we would be able to see her in a hour. What a long hour, We finally got the OK to go back. I did not recognize her she was so swollen, her chest was open, covered by a piece of plastic to keep germs out. We could see her heart beat through the plastic.. Not not sure what think of that! She was stable and faced a long road ahead but she was alive. As we were sitting with her they noticed she was forming a clot on top of her heart.We were asked to step on why they removed it, it only took 10 min. and all was well for now. Over the next few days we just sat by her bed side praying she would pull thought. After a few days they started to wean her off of all the meds she was on. At one point she had 15 different pumps hook up. I amazes me that her little body could handle all that. Slowly but surly her pumps stared to disappear and they started doing sprintes to get her ready to be extibated (removed) off the vent. On June 22 she was extibated and put on C-PAP. That is forced air thought the nose. Two days on that than she was put on oxygen though a nasal canular.. At this time her feeds are going well and her pumps are getting fewer and fewer. On June 27th she was moved to the moderate care floor. This was good news one step closer to home. So we hung out there for a while than we realized she was requiring oxygen at this point she should have been breathing room air. So they ordered an echo of her heart and found that her shunt was narrowing not allowing enough blood to get through. This would mean back to the or to fix it. Instead they decided to give her some time and a blood transfusion witch she had 7 by this time. The fresh blood would allow her to carry more oxygen to her body. This seemed to work. So they thought she could wait till the next stage of the surgery.On July 9th they moved her to the general floor. And started getting us ready to go home. And let me tell you we were ready to get out of here. Our care was great but there is nothing like home. Finally July 12th she was home free. We were so happy to be home. We were back with our son, who had been looked after by my mom and sister while we were gone. So now we start getting settled in get her med schedule down, she is on 9 different ones, feeding and so on. She was able to come home without a feeding tube so that was great. Things were going good for a few days than July 22 she started throwing up her feeds.. Her in home nurse said if she keeps it up take her in. Over the next few hours she just got worse. We have only been home 8 days at this point. So off we went on the way to Spectrum Health. When we got there they thought it was acid reflex and wanted me to give her rice and sent us home. I would not go trying to tell them that her shunt was narrowed and I though they should watch her a little longer. Finally they got us a room. As the night went on she was going down hill fast. She was turning blue, having trouble breathing and making grunting sounds with every breath. All I could do was sit and hold and keep asking are you going to do something. Finally when she was down to 5 breaths a min. and close to death they then decided they probably should do something. So off to the ICU intabated and put on all kind of meds. Sure enough they did an echo and found her shunt was almost closed. Which was what I tried to tell then before that I thought that was the problem as U of M told us this could happen. She was in heart falure!

So once again off in the helicopter sher went heading back to Ann Arbor to fix her shunt. We got there on the 22 of July and surgery was the 23rd. She was in and out in two hours.Dr. Bove had to take 2mm off her shunt. Here we go again on the road to recovery. She was off the vent by the 26th and taking all her feeds by month and off all pain meds and drips. So they sent us to the floor on the 26th bypassing moderate care. She was doing great heart wise but having so tummy trouble. She would take a bottle fine but spit up a lot. So they started her on some meds and that seem to do it.We are being discharged in two days. Wrong the day before going home I found blood in her stool.. This was tracked down to a infection called Necrotizing Enterocolitis (NEC). a very dangerous infection in the bowls. So they started her on meds and held her feeds (npo means no food per oral) for 7 days. So she could have nothing by month fun! She was moved back moderate care because she could not keep her blood pressure down and could not take her meds to keep it down because she could have nothing by month. So in moderate they gave her the meds though iv. Now we wait. 7 days no food it was hell all she did was cry and cry and cry. She was so hungry and it was hard for me to deal with that, I just wanted to feed her a make her happy but I could not and that was hard. So they would give her meds to make her sleep being that upset was not good for her recovering heart. So for 7 days she was out of it. Finally she was able to eat again and was she every happy.. Back on the road to home again. Finally we were free again discharged on the 16th of Aug .Hoping we will be able to stay at home for a while. We are mostly stuck at home Carlee cannot have shots for a month. She home away from germs is were we stayed. She is doing good growing and doing all the things normal babies do. It great to be home for longer than 8 days. We went to the doctor a few times a week either the Pediatrician or the Cardiologist or the in-home nurse was here. Every thing was going well we just waited for the next surgery. In September my family and friends put on a benefit. It was wonderful. On top of all the stress of a sick baby, money was a big stress. We had to try to keep two houses going us in Ann Arbor, food, gas for the 180 mile trip home a few times a week for Jason to go back to work. And all the bills for the house at home and money for my sisters to care for our son. We now have major credit card debt, to add to all the stress. We received our new surgery date for the next step in the process .November 21 was the big day. This is the Hemi-Fontan. Again moving blood vessel around, removing the shunt, placing a patch to direct blood to the right places. So we headed down to Ann Arbor on the 19th from pre-op stuff. Surgery day I'm feeling good about this. I think she is going to do great and she did. Surgery was only a few hours. She looked good. Later that same night they started weaning meds as she no longer needed them. She was really fighting the vent so they sprinted her which is not a normal thing that soon and it was late at night and they don't like doing that either, but she was going crazy so they extibated at 1:30am!. I was scared, I didn't think she was ready. She had only has surgery 9 hours ago but I trust then they know what they are doing. Every thing was fine, she did great. They started feeding her the next day .She looked good but some thing just wasn't right.. I could just feel it. I told Jason that I thought neurologically some thing was wrong, she was very spacey. They said it was the meds, but I felt it was more. Sure enough on the 25th of November she stated having tremors in her left hand. They thought she might be withdrawing.After the nero team looked at her they told us she was having seizures.

They started her on phenobarbital to stop the seizures and ordered a CT scan. The CT showed blood in her brain. She also had a stroke and than seizures. She was seizures with only her left side. That was hard to watch. With the seizures under control, we were off to the floor waiting for discharge papers. December 1st we were discharged. We stayed in town for a few extra days to attend the visitation for our heart brother that god called home.. We made it home on the 3rd of December. It was great to be home again. We were once again not able to leave the house again. It seems like everyone's sick and we need to keep our girl healthy. Christmas was fun but has to skip out on the big Christmas party too many germs. We have been home now for 7 months and all is going well. We were able to take her off a lot of her meds, down to only 2 now. Seizure free since November and no long taking the meds that prevent the seizures and so far so good. It's amazing to me that she just turned a year. It has been the longest year of my life. I would not say the worst year believe it or not. This whole thing has been a life changing ordeal. But there are some good thing we have a whole new family. A heart family that are the only people that know what we are going thought and understand things. We have had some losses, some babies that did not make it. And some babies that are doing great. There is always a good and bad side to everything. So we have to focus on trying to prevent the bad. We had to bring awareness to CHD, so we can make sure our babies have the best chances to live a full happy life and the babies that are born with heart defect have the best chances. I feel that I have only told half my story but it's the half that I think is most important. We would not be were we are today if it was not for family, friends,a lot of prayers, Dr.Bove's hands, and the Lord above. For that we will never be able to thank everyone enough, every time I look at Carlee and thank God she is still here with us thriving every day. We have more Carlee's Angel's than we even could have imagined.

Amanda Jones