Aiden's story as told by his parents:
Aiden's journey began at our routine 20 week anatomy scan. During our scan they found a very large hole in his heart. Many pictures were taken that day and our tears just rolled. We were so worried about our little boy.
So after discussion of a fetal echo for better pictures, we were transferred to the Maternal Fetal Medicine group at Barnes and Aiden's team of doctors was at Childrens. After a full day of ultrasounds and fetal echoes, Aiden was diagnosed with Double outlet right ventricle with a very large VSD. We had fetal echoes and ultrasounds monthly to check his growth and note any changes to the heart but the best pictures would be after birth.
As we got closer to delivery, we were given tours of the NICU, CICU, and the OR (where I would be delivering) to try to prepare us for the big day. The staff, doctors, and nurses were all amazing and encouraging. A date was set at 39 weeks for induction to bring Aiden into this world in a very controlled environment. 30 hours later with help from an amazing nurse, on June 8th, at 3:12, my beautiful baby boy made his appearance 8 lbs 2oz and 20.5 inches long and stable on room air.
I was able to hold him for a couple minutes before the transport team took him to Childrens. Since he was in stable condition he was in the NICU for days until a bed opened in the CICU.
At a week old, Aiden had his first open heart surgery. He had a pulmonary artery band placed to decrease the pressure to the lungs and increase outflow to the rest of the body. The goal was to give him time to grow to see if we would be facing one or two more procedures.
Aiden recovered very quickly after surgery but struggled to take his bottles. He would breath heavy making it difficult to eat and swallow. Poor little guy would just arch because of the uncomfortable feeling in his chest while eating. Aiden was sent home with an NG tube. On the way home from his cardio visit a week later, he pulled the tube out himself. After discussing with his doctors, we gave it a try again without the tube.
Eating was very difficult still but we found if we relaxed him before eating, his breathing would steady and he was able to take the volume he needed to grow so the "bouncing" began. 8-10 times day, we would relax him by singing and swaying or we would dance to music (Coldplay and Wilco are his favorites) to relax before eating.
He was steadily growing on his curve and that's what we wanted. With regular visits, we monitored his growth and Oxygen levels. We knew surgery was nearing so Dr. Murphy decided it was time for a heart cath for better pictures of his heart and pressures of his lungs to decide on his surgical game plan. This was done on May 4th, and trying to keep Aiden sedated to keep his leg still was nearly impossible. He is pretty much on the go non stop. Aiden did amazing and after he was discussed among his doctors, they decided they wanted more pictures. A 3D echo and cardiac MRI was performed June 10th. He did great and his strength amazes me more every day.
After reviewing these pics, they decided the best approach for Aiden is two more procedures call the Glenn Bi-directional Shunt and the Fontan rather than the two-ventricle repair due to the location of the vessels to his large hole. It is too risky to do the two ventricle repair because it could interfere with the electrical component of his heart.
Aiden had his Glenn on July 29th, 2011. We are getting ready for his third operation, this Spring or Summer. His Heart Cath and Cardiac MRI will be scheduled sometime in May. We will then discuss the Fontan or Two-Ventricle repair once again.
We wait for this date to approach not taking a day for-granted and enjoying every moment with Aiden until we have to hand him over and trust in God's Plan.
He truly is a joy. He is very happy and energetic and always has a smile for anyone he meets!
❤Meet our February 16th Heart Warrior Xavier ❤ Son to Jackie & Nate Ross.
Xavier's story as told by his Mommy Jackie:
I am very blessed to be mommy to Xavier and wife to Nate. My husband and I were married in August 2009 and almost right away talked about starting a family. We were over the moon when I had a positive pregnancy test in September, 2010. I automatically went into super protective mode. Using pregnancy safe soap, shampoo, lotion, stopped dying my hair and getting my nails done. I avoiding the food my doctor told me to. I ate right and walked for exercise. I just could not wait to be a mommy.
Time went by fast and before we knew it we were headed to the doctor to find out the sex of the baby. It was Martin Luther King Jr. Day. I remember because I had the day off from work. I remember walking into the doctors office and having a very uneasy feeling. I decided that it was because it normally so busy in there and this time we were the only people there.
We didn't wait long, when the tech came to take us to the ultrasound room. She got right to work, pointing out and labels all the different, important parts of our baby. The atmosphere in the room was light..we were chatting, laughing. She asked if we wanted to know the sex...I let out a loud giggle...and my husband answered "yes". She asked if we had guesses..and I told her I had dreamed that we were having a girl. I even had a conversation with my daughter in my dream..iso I was sure it was a girl. She said well..you can't always trust your dreams..it's a boy...I was sure my heart would burst..a son. I had a son. A mamas boy to spoil.
I was overwhelmed with the love I felt in that moment. The tech continued the scan.. She said their is his heart. He was face down, so She was having a hard time getting a clear picture. She took pictures of his heart for what felt like forever. For just a moment, I had a feeling like something was wrong, but it was a fleeting moment. She told me to clean up and get dressed. Nate asked if everything looked ok. All she would say was that we would go over everything with the doctor.
She gave us some pictures and we went back out to wait. It was not long till the doctor came to get us. I knew, just by looking at her face that something wasn't right. She explained that our boy was face down, making it hard to see his heart. She was 90% sure his heart was fine, but wanted a 4D scan to be sure. I just stared crying. I had no control over my emotions. Just the idea that something was wrong was too much for me to handle. Little did I know, I would need to grow a thick skin and fast.
Two days later we went to the high risk doctor for our 4D scan. I don't have words to describe the wait to see the doctor. It was an out of body experience. I relied on my faith that day...spending every moment in silent prayer. I am sure my lips were moving, cause the lady across from me kept giving my funny looks. Soon the tech came to get us. The scan was again as light hearted as the tech could make it.
However,things did not go as planned. The doctor came in, looked us right in the eye and said " your baby has a very severe heart defect. We are sending you to a pediatric cardiologist, but I am not sure they cant do anything. Sign this paper, you need an amnio."
Just like that, all in one insensitive, cold moment my world got very small. I don't have much memory of the amnio, except for the doctor saying that if his DNA was not normal things would be worse. After the amnio, they lead us to a private room, where we cried. There was nothing else to do. I remember Nate calling my mom, I just could not find the words. A sweet nurse came in with an appointment card for the cardiologist. He was willing to see us later that day. We left the office with instructions to relax and take it easy..YEAH RIGHT.
I spent the time between appointments begging God for a reason, a glimpse into how his all would end. Begging for a strength that I was not sure i could never possess.
I fell asleep praying..I prayed so much, although I wasn't even sure what I was asking God for. My husband was such a rock, being strong and talking me off the ledge. I needed something to keep me going..anything. We walked into the cardiologist office and they were ready and waiting. The assistant told me I could fill out the paper work later..to just go back. The doctor sat us down and said.." I want to do my own scan, but if this is HLHS...it can be treated and your son can live a happy, normal life."
And in that moment, there is was..what I had been praying for. There was HOPE. The scan at the cardiologist confirmed that our son had Hypoplastic Left Heart Syndrome. Basically, the left side of his heart did not develop properly and was not going to be able to be to do its job. He would need a series of open heart surgeries to reconstruct the anatomy of his heart so that his right side could do the job of both ventricles.
He talked in words I never heard of, words that I now utter in my sleep. We left the doctor with an appointment at Morgan Stanley Children's Hospital in NYC and primary results that the amnio came back normal.
We went to Morgan Stanley for two months. We saw surgeons, doctors, genetic councilors...we also spent those months doing research. Our research kept bring us to CHOP, The Children's Hospital of Philadelphia. My mommy instincts were telling me we should check out CHOP, but we were settled at NYC and it was close. I prayed hourly that God would lead and direct our choices so that we were doing the best for our child. I prayed that God would send us to the right hospital, with the right care team for us.
One day I came home from work and Nate told me that the insurance company had called. Many of the specialist that we needed to see at Morgan Stanley were not in network for our plan, this included the surgeries. I almost went into panic mode, till he said.."we are 100% covered at CHOP. We have an appointment with the fetal heart program next week." I was overcome with the feeling that God has answered my prayers and He was directing us onto the path he intended for us.
From the moment we entered CHOP we felt at home. We felt blessed and honored to be a part of this amazing, ground breaking hospital. If I could give advice to any expectant heart mom it would be to go with your gut. That's what I did and it took us to the place we were meant to be.
We relocated from Northern NJ to Philly on May 19 th, 2011. On Saturday, May 28 th at 8:04 pm Xavier Thomas Ross entered the world,screaming and pink. I had him naturally and he had what they call an eventful birth..it was pretty eventful to me! I got to hold him..and after being assessed and getting a perfect apgar score, he came back over to spend some time with us in the birthing room. Way too soon, his nurse came over to take him to the CICU.
We enjoyed 3 amazing days holding, breast feeding, singing to and kissing our boy. At 4 days old he had his first open heart surgery. He did great and came back with his chest closed.
We spent the first two days never leaving his bedside, except to sleep for a few hours in the hospital sleep rooms. Finally, after two days, we went back to the Ronald McDonald House to rest and get more clothes. I went right to sleep, while Nate worked.
At midnight my cell phone rang..in a sleepy haze I silenced it and fell back to sleep. Nates phone rang a second later. It was someone from the hospital, telling us we needed to get there, right away. The world literally stopped. Everything seemed to be in slow motion, even though we were moving in a panic. We flew to the hospital, ran to the 6 th floor, around the corner and stopped dead in our tracks.
There is no way to describe the feeling of seeing 30 people, dressed in scrubs, surrounding your newborn. A woman I have never seen before stopped us and asked if we were Xavier's parents...then she said..he is fine!
Dr. Wernovsky (soon to be our cardiologist) came over and explained that when they pulled chest tube it bumped the wires in his heart and caused blood to leak around them. He was basically bleeding internally. His nurse caught it early based on his change of mood and some blood leaking out his chest tube scar. His surgeon (the fabulous Dr. Gaynor ) was called in and within ten minutes Xavier was stable and doing well..ten minutes before, he was in pretty bad condition, however his heart never stopped and his blood pressure stayed normal. I have to be honest, I left the RMH thinking he was dead. This was the scariest moment of my life and of this journey.
The days ahead consisted of the neurologist finding a blood clot on the base of his brain during a study and the discovery of a paralyzed vocal cord. We had to learn to insert an NG tube, how to administer a blood thinner with injections, how to use his feeding pump and how to do infant CPR.
Xavier spent his time being cute and gaining weight and on June 21 st we were discharged and headed home. Interstate was pretty un-eventful for us. Xavier was admitted once and needed a blood transfusion. We were able to take out the NG tube in August. X loved being home and his favorite things to do were get baths and swing in his baby swing.
We headed back to CHOP on October 12 th. X had a pre-op MRI scan of his brain (the clot was gone and his brain looked great) and his heart. The next day he went in for his Glen (the second stage).
He did amazing and was discharged in 8 days. We have been home ever since, with one brief stay for a cardiac cath. He struggles with development, but is progressing at his own pace. He sees a PT, OT, speech therapist, feeding clinic and a developmental teacher. They all just think he needs extra time with new skills. He is silly and funny and super cute. He loves to be outside. He is great at puzzles and building towers with his blocks.
We recently were told that he will have the final stage in his repair in July. At that time he will also have a repair done to his tricuspid valve that is leaking. Xavier is my hero, my best friend and a mighty warrior. He is an answer to my prayers, because to look at him is to look at HOPE. He is perfectly imperfect.
His heart is beautifully, wonderfully made by the hands of God...made broken for reasons that are beyond me..but I know that his life is a testament to the power and mercy of God. Thanks you for reading our story. Please feel free to follow our journey atwww.xaviersheartjourney.bl
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