Wednesday, July 7, 2010

How We Got Here

We've come a long way in the past three years. Today Noah is a spunky three year old who loves to throw balls, jump on the tramp, swing for hours, and watch Curious George. He loves his Nanny and Poppy and asks to go to their house every single day. There were many times since he was born when I wondered if we would ever get to this point though.

I had been induced 4 weeks early due to some worrisome results after a stress test. It was suspected that preeclampsia was causing my placenta to shut down. What started out as a normal induction quickly became serious when Noah wasn't getting enough oxygen. I was put on oxygen and told to lay on my side and when that didn't help the room was filled with Dr's and nurses within minutes and I was told that I had to push him out now, even though I was only dilated to an 8 or I would have to have an emergency c-section. I pushed him out in just a few pushes and I thought all was well because they let me hold him for several minutes. What came next was a whirlwind.  I can still remember going into the nursery to see Noah for the first time after he was born and seeing the Neonatologist, from the children's hospital next door, listening to his heart. "Your son has a heart murmur and its not the normal kind of heart murmur. We are going to take him over to Primarys and run some tests. Don't worry Mom. We'll take good care of him." Then I watched as the Life Flight team wheeled him away. That night, after many tests, Noah was diagnosed with Critical Aortic Stenosis. The next day specialist tried ballooning his aortic valve and when that didn't work we waited to find out if any doctors would agree to perform a Ross-Konno procedure. No one would.

Noah was very sick. His Billirubin level was lethally high, his oxygen level low, and the pressure in his lungs climbing every minute. My grandparents came to see him one day while Shane and I were meeting with the Doctors. The nurses told them that he was one very sick little boy.

One day a Fellow assigned to Noah's case informed us in passing that there was nothing left to be done, they were out of options. He gave us the impression that we would have to let our son die. We were devastated. We rushed to the waiting room where my family was and cried in each others arms. Soon after we met with the Attending Cardiologist who gave us another option. Noah would need a Heart Transplant to live.

The Transplant Cardiologist at Primary Children's Hospital had transferred to Pittsburgh the Friday after Noah was born, leaving the transplant program at Primary's on hold. If we wanted to try and get Noah a new heart we would have to go to a hospital out of state to get it. We were given two options to choose from. We could either go to Loma Linda in California or to Denver, Co. I called around and talked with their on-call transplant coordinators, I even spoke with a local family whose son had a heart transplant at Loma Linda. I did research online and everything we saw said Loma Linda. We tentatively made up our minds that we would go to California. The next day we sat in a secluded corner of the hospital and prayed together. the most overwhelming feeling came over us that we should go to Denver. We went over it again; Denver was harder to get to, rougher weather if we had to travel in the winter, we had never been there and they hadn't been doing pediatric heart transplants as long as Loma Linda. But when I had called the transplant coordinator, Alison, had been so much kinder and was more helpful. They had less babies waiting with the same criteria and most of all, it felt right. We rushed back to the NICU and told them we were going to Denver.

We quickly packed up some stuff and drove through the night to meet up with Noah who went ahead of us by Leer Jet transport. We met with the Transplant Coordinators and got the necessary testing finished up to get Noah put on the UNOS waiting list. The next twelve days were so hard. Noah wasn't doing well and he had some complications. He was so sick that we were given a few other options than just a "routine transplant". He was also listed as ABO Incompatible, meaning that instead of only being able to get a heart with his blood type, he was sick enough and young enough to be able to get a heart with any blood type. TCH was also part of a study that allowed them to offer DCD (death by cardiac donation). Then, on Thursday July 5th Noah had a Heart Cath to put in a stent and even possibly have a Hybrid. The process was long and took a lot out of Noah.  I was so worried and lonely that I called Shane and asked him to come out that weekend even though his next planned visit was a week away.

Back in the CICU Noah was headed down hill. His tummy was swelling, his vitals were bad and he was losing strength. I knew we didn't have much time.

Friday came without much progress. Everyone was worried and all we could do was wait. I spent the day at the hospital then headed back to the Ronald McDonald House to pump and eat dinner before heading to the airport to pick up Shane. I was sitting on the floor against the door of our little room, pumping, with my phone on one side and the pager from the transplant team on the other when my phone rang. It was Alison, she had come back on call that morning for the first time since we had arrived. Noah was getting a heart.

It was divine intervention that made it possible for Shane to be there that night. I know without a doubt that I was prompted to have him come when it wasn't in the plans. I am so grateful for that. Noah went into surgery at 8:30 am on July 7th, 2007. I waited in a private family room while Shane waited at the Ronald McDonald House with Lilly. Alison gave me updates every hour. I was surprisingly calm. I tried really hard not to think about what was happening and I felt strengthened with a strength beyond my own as I did the entire time I was in Denver. At 3:55pm I was brought into the CICU to see Noah for the first time with his new heart.

He had the corner bed and every space was busy with someone doing something. Dr. Campbell paced at the foot of his bed whistling "Downtown" by Patsy Cline the entire time. His tubes were draining and the pacer leads were keeping his heart beating while he was drugged and sedated. I had been warned about what he would look like when he came out after the transplant. I expected to see all the wires, and tubes, and the incision down his chest. I was glad I had been prepared, it made it a bit easier but at the same time, it was so awful.

It took Noah a long time to recover enough to be transferred out of the CICU (Cardiac Intensive Care Unit)  to the CPCU (Cardiac Progress Care Unit). I knew it would since he had been so sick before. When the day came, I was scared. A new set of nurses and Doctors who were taking care of several patients at once. He wouldn't have one on one care anymore and because I had Lilly at the RMH with me, I couldn't stay at the hospital night and day. Luckily we were blessed with many loving nurses who took very good care of Noah and when I wasn't there and they couldn't hold him there were many volunteers who came and loved on him.

Noah was finally released toward the end of July. I brought him over to the RMH on a Friday morning and we celebrated Lilly's 2nd birthday. By Sunday he was screaming not stop. When I took him back on Monday for his first clinic appointment I could tell Alison was not pleased. It was decided to readmit him. He was put back on IV antibiotics for a suspected infection of his incision. He was having a lot of ectopy (missed heart beats, fast heart beats, etc.) One day while I was holding him his heart rate spiked. A nurse rushed in but it had returned to normal. A few moments later, he went into Vtac. His heart rate spiked to almost 300 bpm. The CICU team was called up and when several different tricks to return him to a normal sinus rhythm failed, he was given a drug to stop his heart. After a few days back in the CPCU, his nurse Ben reported his color off and a low crit level so a blood transfusion was started. That night I received a call about 3am. Ben was calling to tell me Noah had a bad reaction and was taken back to the CICU.

When I got there the next morning nothing could have prepared me for what I saw. Noah was back in the same bed he was in when we first came to Denver. He was on the ventilator and was swollen and red from head to toe. The Dr was digging around in his arm to get a central line and it wasn't working. His lungs were filled with fluid and he had hives inside and out. He was dying.

He ended up having a lung collapse twice and after a few days of no answers he was taken to the cath lab to take some biopsies and check for rejection. What they found was that Noah's blood pressure was dangerously high. Too high for even an adult. He was being taken down to get an MRI of his brain. Dr. Pietra told me that with pressures that high he would be surprised if there wasn't a brain bleed.

That wait was awful. Noah had already been through so much and had come so far... I felt sickly composed on the outside and frightfully out of control on the inside. Much to everyones surprise, the scan came back normal. The next day it was decided to treat Noah as if he was having rejection. The high dose steroid would also help the suspected TRALI (Transfusion Related Acute Lung Injury) that was attacking his lungs. He slowly began to improve.

The ectopy improved and his blood pressure went down and eventually he was released again. Once he was off all the sedation he did cry... a lot. I had to give him large doses of Benedryl to knock him out every single day. He also had really strange diarrhea. Other than that, he was doing well. We continued clinic appointments several times a week and counted off the days until we could go home. Shane visited every other weekend and my parents and sisters even came out to see us once. While they were visiting Noah almost had to go in for another cath to check for and repair a suspect CoArch of the Aorta. The pulses in his feet were faint and at one clinic appointment with another coordinator they couldn't be felt at all. I was so nervous I was nutty. The day of decision I took Noah up to the CPCU to find Dr. Pietra so he could feel for a pulse and make the decision. He grabbed his foot and called off the cath.

The day finally came when we were discharged and sent home to Salt Lake. Now that the day had come I was scared. But it was time. I arranged for enough oxygen canisters to get us through the 8+ hours of driving and I packed up the room that had been home for the past 4 months. We brought Noah home for the first time on October 30th, 2007.

Over the next few months we adjusted to home life again and tried to find a new routine. It was much more difficult that I would have expected. But we were finally together as a family and having Shane in the same house was all Lilly and I needed. Being apart was so much worse than I can even describe.

Noah had lots of clinic appointments and continued to do well other than his strange poop and crying fits. One day he pooped white curds and after several ER visits and insisting on seeing a surgeon we finally figured out what was going on. Noah had gall-stones. He went in for surgery on December 10th to have his gall-bladder removed and his appendix taken out (since Shane had his taken out it was a precautionary measure).  I saw his gall-bladder after, it was about the size of 3 M&Ms and the 3 stones filled it to capacity. It was scarred and shriveled and it was a good thing it was removed. While his diarrhea has never gotten better, he did stop screaming and has never had white poop again.

It was sometime after his last surgery that things started to calm down. We found a routine and eventually life went on. It took a long time for me to deal with all of the buried emotions I had been suppressing. They expressed themselves in the form of panic attacks and eventually took a physical tole on me. But through faith and prayer and many several spiritual experiences I have worked through the trauma. And here we are, three years post transplant. We go to clinic every 4 months, sooner if he gets sick. He is active and lively and preparing for preschool in the fall. His speech is getting better and he is learning to express himself. He's growing and learning and loving and living life. Many people and all of his doctors always say you could never guess he had a heart transplant by looking at him.

The road has been rough but he made it through. And while there are days where he wears me out and in true three year old fashion tries my patience, I am so very grateful for every single moment of every single day.


  1. Wow. What a story. It's a miracle story that you can actually touch and feel. How amazing. So glad to hear that Noah is doing so well!!
    Jenny (mom to Aly-HLHS)

  2. Holy cow Crystal! I assumed life had to be hell for you going through all of that, but I had no idea! I remember praying for all of you and being pregnant myself, wondering what I would do if I were in that same situation! I was proud of you then and still am today! Your strength and faith are astounding! I'm so glad things worked out the way they did! Noah is such a cute kid! What a blessing to you all! I can't wait to meet the next one!

  3. Wow, I loved reading this. You guys are amazing and have been through so much! Thanks for sharing! Yay for Noah and yay for three years and going strong! :)

  4. That was quite the story to share. WOW!!! You guys have been through one heck of a battle with your precious Noah! I am so glad that God led you through this journey and you found the right people to give him a chance at life!

  5. WOW...that is an amazing and heart warming story. You have all been through so much and your story is such an inspiration. Thank you for sharing your story and I look forward to following Noah for a long, long time!

  6. Wow, what a roller coaster ride you guys have been on! I had no idea when I clicked on your blog and saw Noah's precious face. He wears his scars well! :)

    I'll definitely be keeping up with Noah, and can't wait to read about all of his adventures.

    Many prayers for continued health for Noah and the rest of your family. Thanks for sharing your story!


  7. Wow...simply amazing! Thanks for sharing Noah's story...I look forward to following his journey.

    Stephanie and Braeden(HLHS)

  8. I think you are amazing! I'm crying just reading about it - I don't know how you got through all that. I'm still afraid of the whole transplant thing. Noah looks fantastic. What a miracle!
    God bless.


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