for joseph's heart: July 2009

Thursday, July 30, 2009

For Deyton

It's been a little over a month since my last post and all has been well for Joseph and our family. We've felt rather normal this past month which is an awesome feeling!! All looked well at Joseph's last cardiology appointment. His cardiologist adjusted a few of his meds and took him off his daytime oxygen but was cautious. As he put it, since Joseph doesn't "play by the rules", we need to watch him carefully. Joseph has never played by the rules. He should have died at birth, but lived. He died for a short time at 3 months, but came back. After the cardiac arrest, his heart shouldn't have been strong enough to receive his second open-heart, but it was. I could go on and on- Joseph doesn't play by the world's rules, he plays by the Lord's.
Joe has been a regular 4-year old these past few weeks, time-out's and all. I never thought I would ever have to give my sweet, little, darling boy a time-out but I'm grateful that he's here and needs a time-0ut every once in while. We joke and say "well, now he's a 'real' boy".
So... we are good, thank you for all your prayers.
I would like to tell you about another heart that has been occupying my emotions lately. His name is Deyton Kash Sorensen. He was born on July 21st in St.George, UT to Derek and Krystal Sorensen. Deyton is their first child and they didn't know before his birth that he had Hypoplastic Left Heart Syndrome. So... soon after birth, he was life-flighted to PCMC where he was diagnosed. Because his heart had more wrong with it then just the HLHS, surgery was not an option. His parents were faced with the decision of letting him go or waiting for a heart transplant. They fasted and prayed and made the very difficult choice to let him go back to Heavenly Father. There couldn't be a more difficult choice for two parents to make.
The Sorensen's are in my parent's ward and my dad is their Bishop. My mom called me on Saturday to let me know about Deyton and his situation. Although I have never met this family, I felt as if I knew them. I cried several times that day as I spoke with my mom and then later Brad. It's strange to not know someone but feel so connected because we know exactly what they're going through. On Sunday, I was at church and at about 11:15, got up to take my fussy baby out of relief society. I walked through the halls for a few minutes and then stopped in the foyer to sit down. I was overcome with emotion- so much that I had to leave the building and walk outside. I couldn't control my sobs and I had no idea why I was crying with such hurt in my heart. I held my little Lainey tight for comfort and my mind raced to search for the purpose in my cries. I thought of Joseph but peace came to my heart that all was well with him. So then I went through each one of my children in my mind to see how I felt. I knew my family was fine. Then I thought of Deyton. I knew it was for him that my heart was full. I continued to sob knowing the hurt that his sweet parents were feeling. I later found out that he had passed away just moments prior to all of this happening to me. It's so amazing how the spirit works.
Please pray for their comfort in this difficult time. Deyton's funeral was on Wednesday. I wasn't able to attend but heard the details about the wonderful service. I know the Lord's spirit is with them and will get them through this trial. If you'd like to read more about Deyton, visit his blog at http://babydeyton.blogspot.com/
I want to express my love for his family and let them know that our prayers are with them.

Joseph's Heart History

The Lord has blessed us in countless ways. Joseph's amazing OB, Tracy Winward, discovered in a routine ultra sound that something wasn't right about Joseph's heart. An appointment at PCMC was made for me to receive an echo cardiogram for my unborn baby. It was at that appointment in October of 2004 that Joseph's defect was first diagnosed. We were told on many occasions that utero diagnosis was rare. Without an OB with such great skill, Joseph would have been born in St. George, UT and died a few hours after birth. Instead, he was born at the University of Utah in Salt Lake City, and then transported to PCMC- right next door.
After a couple of hard days in the NICU, Joseph received the Norwood(w/Sano modification) surgical procedure. He was in the hospital three more weeks and then was able to come home. After being home for two weeks, at a scheduled cardiology appointment, arrythmias were discovered and later diagnosed as multi-focal atrial arrhythmia. We returned to PCMC for another 10 days and then back home for a week and then back to PCMC for another 5 days. Joseph's arrythmias were thought to be under control so we were able to return home where we spent the next four weeks, the longest so far.
When Joseph was a little over 3 months old, on May 9th, 2005- the day after Mother's Day- Joseph's heart rate monitor alarmed at 6am. He was in tachycardia and since we lived in St. George, there was very little knowledge in the Pediatric Cardiology department and the medication he needed to calm his heart could only be administered by a cardiologist that specialized in the electrophysiology of the heart. That type of specialized cardiologist was only found at PCMC. A couple hours after arriving at Dixie Regional Medical Center, Joseph had a cardiac arrest. Dr. Marsden, our most beloved pediatrician was wise and careful, but most of all listened to the spirit and did all the right things to bring Joseph back.
We were later told that Norwood babies don't survive cardiac arrest. But Joseph did.
After being taken to PCMC by life flight, Joseph spent the next week in critical condition. I kept telling myself that if Joseph was meant to die, Heavenly Father would not have let him come back after the cardiac arrest. I clung to this faith every moment of each day. The next week got better and his surgeon was surprised, even shocked, that his heart function was so good- good enough even to move on to the next phase of surgery. On June 7th, Joseph received the bi-directional Glen surgical procedure and then later that month we finally went home.
Much has happened over the past three years: tachycardia again in Sept. '05 but no arrest; developmental delays on his left side presumably a result of the cardiac arrest or possibly a stroke soon after that; seizures that began in August '06- again a direct result of the cardiac arrest or stroke; and a life changing move to Layton, UT- then one back to St. George- and then back to Layton again where we live now and plan to stay.
Joseph's phase III- Fontan surgery - was planned for June, 2008, but after a cath revealed a very large vein that had grown from his PA- and so was thus coiled, Joseph's sats shot back up above the 80's, his surgery was postponed.
He did receive the Fontan on May 20th, 2009. An MRI, done a few weeks before surgery, revealed an enlarged Aorta(which is really his pulomonary artery), and a narrowed PA. During surgery, these two areas had to be reconstructed. Aside from a small complication with his Fontan, which was solved by splicing the conduit and extending it, the eight hour surgery went well, without any major problems. Joseph recovered somewhat slow the first two days out of surgery but once his ventilator was removed, he progressed nicely.
This is where I begin my regular blog posts.