Sunday, July 02, 2006

Graber family heart story.

When we found out in May 2004 that we were expecting another baby, we were a little surprised but very excited. Our son Garrett was born in May 2003 so would be around 20 months old when the next little one arrived. It would be a challenge but one we were ready for. On September 10, 2004, during the routine 20-week ultrasound, we found out that our baby had a severe heart defect called Transposition of the Great Arteries. We met with Dr Drake, a perinatologist at Methodist, to discuss our options. She suggested we meet with a cardiologist, Dr Mooradian, to confirm the diagnosis, as well as have an amniocentesis done to rule out Down syndrome. We left the ultrasound devastated but since we didn’t fully understand all that meant, we didn’t know what was ahead. We were leaving for a week’s vacation so we would have to wait until we got back to do the test & meet with the cardiologist.

When we got back, we had the amniocentesis done but had to wait two LONG weeks for the results. The test came back negative so we were happy with that news. In the meantime, we met with Dr Mooradian, whom we now know as the best cardiologist EVER & a very dear friend, for an echo of our baby’s heart. Unfortunately, Dr Mooradian found that in addition to Transposition, our baby also had Double Inlet Left Ventricle, ASD & VSD (holes between the 2 chambers) which results in Hypoplastic Right Heart Syndrome. Basically, half of our baby’s heart wasn’t developing & never would because both of the valves went into the left side of the heart instead of one on each side. This news was extremely hard to take because it meant that we would have to put our baby through 3 heart surgeries instead of one. Dr Mooradian was awesome & met with us for as long as we needed. We were immediately concerned about playing sports, having kids, etc. but Dr Mooradian reminded us to keep our focus on the “normal” milestones for our baby ahead like smiling, crawling, & walking—just another reason why he’s so terrific! He really kept it in perspective for us.

At that point, we decided we wanted to meet with the surgeon at Mercy & the cardiologists & surgeon at the Children’s Hospital of Iowa in Iowa City. Those meetings confirmed the diagnosis that Dr Mooradian made & gave us a ton more information about the surgeries ahead for our baby. We made the decision to doctor with Dr Mooradian in Des Moines but have the baby & the subsequent surgeries in Iowa City. It made for a lot of driving during my pregnancy but with Darin’s family only 40 minutes from the hospital there, we knew we’d have a lot of support.

Although I had around 13 ultrasounds during my pregnancy, we were adamant that we did not want to find out the sex of the baby. I knew that I wanted one surprise that was a positive one in case there were others around the bend. I started having contractions on the morning of December 31, 2004 and since we had tickets to the University of Iowa men’s BB game that night, we decided to make a trip to Iowa City. We went to the game & my contractions were about 10 minutes apart the entire night so we stopped at the hospital afterwards. They observed me for a while but sent us home just after midnight. We went to Darin’s parents because it was closer & because I thought we’d be back later that night. Sure enough, I woke up at 2:45 AM because my water broke so we headed back to the hospital. The labor went really fast & soon we knew the sex of our baby.

At 5:09 AM on January 1, 2005, Gabe Benjamin Graber entered the world & changed our lives forever. He weighed 7 lbs 13 oz & was 20 ½ “ long. To our surprise, we were able to hold him briefly before they took him to the NICU. Darin went with him and came back to get me once I had recovered from delivery. Gabe was a fighter from the start and proved us all wrong. It was such an answer to prayers! We thought Gabe would need to be intubated (so machines could breathe for him) or put on oxygen and he didn’t. We thought he wouldn’t be able to nurse right away and he did. We thought Gabe would need to have a surgery at a few days old & by a miracle of God, his heart was compensating for the issue already so he didn’t. Everything went really well and we were out of the hospital in 7 days—9 days before his original due date! We were ecstatic & relieved.

We met with Dr Mooradian when we got back and he indicated that we’d need to do follow up appointments with him weekly & then monthly until Gabe had his first surgery at 6 months old. At every appointment Gabe had an echo done on his heart, an EKG, a chest X-ray, and they took his blood pressure and pulse oxygen level. A normal person maintains 100% pulse ox level but since newborn babies gradually work up to that, Gabe was OK at anywhere between 70-90% during his first months of life. We were so blessed that he grew & developed just as a normal baby would during this time.

In May we scheduled surgery for July 7th and a cardiac catheterization for June 20th. We dropped off Gabe at the cath lab in the wonderful hands of Dr Fagan around 7:10 am and were able to see him again by 11. Dr Fagan reported that everything looked “good” (or as it was supposed to) and that Gabe was at a perfect time for this 1st surgery. We went home that evening & spent a few more weeks enjoying our time as a family.

On July 6th, we returned to Iowa City for pre-op appointments and spent that evening celebrating my birthday with Darin’s family. We stayed at the Ronald McDonald House that night with Gabe & Garrett went home with Darin’s parents. We didn’t get much sleep that night but prayed diligently for strength for us & for Gabers in the coming days. We were at the hospital by 5:30 AM and Gabe was asleep and off to surgery by 7:30. Dr Burkhart, the surgeon, and Dr Moyers, the anesthesiologist, both spoke with us briefly before taking him away so we knew he was in good hands. Dr Moyers even said he’d take care of Gabe as if he were his grandson! Dr Burkhart would be performing the Bi-Directional Glenn operation on Gabe and it would last 3-4 hours from when they opened him up. This surgery took his Superior Vena Cava and connected it directly to the lungs so that the blood from the upper half of his body would drain into his lungs and reduce the amount of blood pumped through his heart. The next few hours were long & hard but we had some friends and family there to get us through the wait.

At 12:15 Dr Burkhart came in and said that Gabe did beautifully & that he was only on the heart-lung bypass machine for 50 minutes! We were able to see Gabe by 1 & were relieved to see that besides all of the tubes & machines, our son still looked like our son. He was pinker than we thought he would be & looked really good. The next 24 hours were crucial as Gabe woke up & started his recovery, but 3 short days later, we were moved out of the PICU into the Pediatric floor. After being in the hospital for 5 days, we were sent home. It was an amazing experience & one that changed our life.

Gabe recovered well at home but in early August, was admitted to Mercy for an infection in his incision. They were able to treat the infection with antibiotics and didn’t have to open him back to up to clean it out. We were so thankful for that & were in the hospital 6 days.

During our stay in July, we met Jim, Melissa & Dylan Hooper & made an instant friendship with them. They had been there since June 1 so were very ready to go home. We kept in touch with them via phone, email, carepages & Heart-to-Heart meetings. After a meeting in September, Melissa mentioned to me that she was interested in starting up a non-profit. I quickly jumped on board & thus, Help-A-Heart was born! While we were both very fortunate to have our friends, our church, our family & our communities reach out and support us, we know that not everyone is so lucky. We felt that God had placed it on our hearts to create an organization that would financially support those families with heart babies hospitalized for a surgery or other reason. We are excited to embark on this journey & want others to know more about congenital heart defects and how it affects these families.

While being a “heart mom” isn’t something I had planned for my life, I wouldn’t change these last 17 months for anything. Gabe is a true joy to raise, spend time with, & watch how he touches other’s lives. We both feel fortunate to be his parents and thank God every day for giving us this special child. Garrett loves Gabers so much & teaches him new things all the time. From Garrett, Gabe has learned to love tractors, climbing on furniture & jumping on the bed. From Gabe, we all have learned to cherish every day God gives you & to laugh & smile as much as possible. We have met so many wonderful doctors, nurses, heart families, & friends through this journey that have been there for us when we needed them most. It’s been quite a ride but we’ll see where it takes us! For now, we’re just watching Gabers grow up & waiting until sometime in 2007 for his next surgery, the Fontan. This surgery will attach the Inferior Vena Cava to his lungs so that the blood from the bottom half of his body drains there. His heart will then only be responsible for pumping to his body, the blood will drain to the lungs for oxygen, and the lungs will send the oxygenated blood back to the heart. Complicated & amazing!

You can read more about Gabe’s journey at www.carepages.com under “gabegraber”. We love reading posts from anyone who checks in on us!

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