In July 2011, it will be two years since our gorgeous little girl had open heart surgery to repair a VSD (Ventricular Septal Defect). This type of defect is a hole between the right and left vertical causing oxygen-poor blood to be pumped into the lungs. When the hole is large, as Graci's was, the heart tries to make up for the low oxygen levels and begins to pump too much blood into the lungs. Graci's was large enough at birth that doctors were confident it would require surgery to repair.
Interestingly enough, when typical babies are born with this defect, the surgery is usually performed within the first few days of life. When the baby has Down Syndrome, surgery can wait sometimes up to two years... giving the baby and his heart time to grow. The reason for the wait is because DS babies keep the pressure in their lungs (necessary for life in the womb) longer than typical babies. Why? We haven't found anyone that has answered that question. We like to believe that because 50% of all DS babies are born with a heart defect, it is a God given safeguard in order to give them a better chance at survival.
Cardiologist visits begin
Graci started seeing a Cardiologist within weeks of her birth. At each visit, she had chest x-rays and an EKG (or ECG for Electrocardiogram - the K is from the German word Elektrokardiogramm) both reviewed by her doctor. She had appointments every three to four weeks to monitor her progress.
Between the visits, we were to watch for shortness of breath, fast breathing, paleness, hard breathing, fast heart rate and sweating while eating. It was so frightening because we couldn't help but think, "What if we miss it? What if we're not paying close enough attention?" We were filled with fears and doubts, but with every visit to the cardiologist, we were a bit more at ease.
Incident
We did have a scare when Graci was six weeks old when she went a bit blue, followed by a strange transparent color. Even though she got her color back quickly, we still rushed her to Children's hospital where she was admitted and had to stay for the night. At least she was in the PICU this time, so we could stay with her.
After all the tests were complete, it turned out she probably had choked a bit on her formula, but was able to clear it herself. The best part about the visit with all of the doctors was learning that Graci indeed had a Gag Reflex. Apparently, this is one of those things that can be missing with these little DS babies. One more thing to make us hopeful and excited about Graci's progress.
Surgery scheduled
In late June 2009, we went for a Cardiology appointment and were excited to tell the doctor about all of the new things Graci was doing. He asked us questions and we answered like we usually did. He reviewed the x-rays and EKG and performed Graci's exam. Up until this point, we'd been thinking her heart surgery would happen some time in the fall. When he was done with the exam, he said it was time to schedule the surgery and it should occur within the next few weeks. Then he wrote a prescription for heart medications. She hadn't had to take them yet and we sure weren't prepared to start giving them to her. One med two times per day and the other three times per day. That sure felt like a huge responsibility.
Graci's heart surgery was scheduled for 16 July 2009. She has one set of Grandparents who live in the same city as well as two aunts and two uncles. Her Grandparents from Eugene, OR and aunt from Seattle, WA all planned to come down for the surgery as well.
Meeting with the surgeon
The day before surgery, we were scheduled to meet with the surgeon and his nurse to walk through what to expect and to go through all of the risks associated with the surgery. It was awful to hear about all of the things that could go wrong. They have to tell you everything because in the end, you have to give your consent to proceed. We asked at the end if he ever had anyone who didn't sign the consent form. He simply told us she wouldn't make it without the surgery and we tearfully signed the form.
The most important part of this visit, we learned the next day, was when they showed us a doll that had tubes coming from its belly, tubes down its throat, wires and more tubes coming from everywhere. He and the nurse explained what everything was for. And they said that when we see Graci for the first time after the surgery, she would be covered with tubes and wires and it would look pretty awful.
Prayers for Graci
Graci's Aunt 'Nise added a prayer request on Facebook a few days before surgery. One of her friends said she would light a candle and say a prayer at 8pm in her honor. That message turned into a candle lighting ceremony in several States and Countries around the world. The Moose Lodge in the small town Graci's mom grew up in held a candle lighting ceremony and had hundreds of written prayers for Graci. At our house, we had a friend of the family, who is also a pastor, come lead our prayer and candle ceremony. We felt so much love and were given so much strength from the worldwide event.
Day of surgery
The next morning we were up early and on our way to the hospital. We sat in the pre-surgery area with Graci while they checked her in, took her vitals and we waited for the surgeons nurse. There were lots of hugs, kisses and tears even before they took her away. The handoff to the nurse was absolutely awful and we decided no parents should ever have to do that. The nurse said she would page us when Graci was on the ventilator and heart bypass machine and then again when the surgery was over. Even today, two years later, the heartbreak of this moment still resonates.
They thought the surgery would take up to four hours, so we joined the rest of the family for the long wait. We walked to the chapel, prayed and cried for a while. We added entries to the prayer book and sat in near silence... through the sniffles.
We decided a walk outside would do us all good, so we decided to go across the street for a Starbucks. As we were walking out with our drinks in hand, the pager went off. We dreaded making the call because we really didn't want to know when our baby was on machines. Cole called the number. It had only been an hour and forty minutes since surgery was supposed to have started. You can imagine our complete shock when the nurse told us the surgery was over and she would be in recovery within 20 minutes. She said everything went so well and so quickly that she didn't have time to send the first page! Thank God for answered prayers!
Recovery
We were in the waiting area when we saw Graci's bed get wheeled by and on her way to the PICU. The surgeon and his nurse came in a few minutes later to discuss the surgery. "Everything went as expected and she did very well." Again the answered prayers!!! They said we could go in and see her within the hour. The nurses just needed some time to get her settled.
We made our way to Graci's room to see her for the first time without a broken heart. And here's where we realized how important that doll was that the surgeon had showed us the day before. She had tubes, wires, bandages and wraps everywhere. She still had the ventilator in and that just killed us to see. This might sound a little odd, but Graci had Grandmas, Grandpas, Aunts and Uncles there to see her as well. We decided it might be best to take a photo of Graci and text it to her Aunt in the waiting room. We saw that doll ahead of time and knew a little about what to expect. But, they hadn't and we knew it would be overwhelming for everyone. As hard as it was to see, they all agreed they were glad to see a photo before stepping into the room. Out of respect, that photo was of course deleted immediately.
We spent five days total in the hospital with Graci. Five days? How is it that these little angels can recover so quickly? Graci was off of the morphine drip on day two, had the ventilator removed on day three, the chest tubes removed on day four and was eating like a champ on day five! She made it through open heart surgery like it was nothing! All of our fears were gone just like that. What a blessing and what amazing surgeons to be able to perform heart surgery on their little tiny hearts. Unbelievable.
Now for the good stuff!
The thought of open heart surgery on your child... any child... is devastating. But, we've lived it and want more than anything to share the results with others who are preparing for this surgery. There is nothing that we can say to take the pain of the idea of surgery away, but we can go through all of the positives that we have experienced after having gone through it.
The first thing we noticed after her surgery, and this was just days after, was her color. She was actually pink for the first time ever! Our little porcelin doll was actually supposed to be pink! We hadn't realized this and were so surprised to see it! Graci's cardiologist said that was a common theme among his patient's parents.
Before Graci left the hospital, she was already off of one of the heart medications. And, within two weeks, she was off the Lasix as well. What a relief that was. We worried so much that we would miss a dose along the way.
Within five days of surgery, she was finally belly laughing. How fun to see her have the energy to truly belly laugh!
Graci was only four and a half months at surgery time, so she was still on formula. Before surgery, it would take her up to an hour to get through four ounces of formula. Soon after surgery she was eating six to eight ounces in 15 - 20 minutes! And, she was able to hold almost all of it down. She had a problem with projectile spit-ups out her nose and mouth, but after surgery, this nearly stopped altogether.
She really started working on her gross motor skills after surgery. She had so much more energy that rolling over became a much easier task and pulling herself up to stand on laps began to happen everyday!
These are all common occurances as shared at our family group sessions. If you have a baby in need of this surgery, we hope you will take comfort in Graci's story and that it will help you stay positive and keep the faith.
