My name is Bethany and I have been blessed beyond measure with three healthy children. Our oldest is nearing the age of 5, our middle child is 3 and Eli came to us at the very end of August. I couldn’t wait for him. We knew he was the missing piece of our family. The delivery went great and he was the picture of perfection. At a day old he hadn’t even lost an ounce! The doctors were very pleased with his progress. We went home to start our new family of five fully confident in our abilities. He was our third so we were “prepared for anything” we told ourselves. I told my husband this was the smoothest transition of the three.
When Eli was nine days old he stopped nursing. I took his temperature because he felt like ice, and he was 94.5 degrees, fully clothed and swaddled. He wouldn’t wake up. His breathing seemed hard. I panicked. We got his temperature back up to normal with skin on skin, which took almost three hours, and tried to feed him again. We felt maybe he was getting sick, but he still wouldn’t eat; and we knew this was not normal. I called the pediatrician’s office and the fellow on call suggested to try and feed him again in a couple of hours and if he wouldn’t eat to take him into the ER. We found a sitter to come to the house and stay with our toddlers and left as fast as we could. We both called our parents to let them know what was happening. They asked what they could do but we had no idea.
I had been crying on and off all day. My heart never slowed down. My husband was very reassuring and held my hand constantly. What I remember saying over and over was “something is wrong, something is wrong. This is not normal.” I refused to put him down. I knew since he was born that something was going to happen but didn’t understand it either.
At the ER where we live they thought it was Jaundice and almost sent us home. We were there for 4 hours and Eli’s breathing became more labored. He still wouldn’t wake up. They took blood from him twice and he didn’t even flinch. They decided to transfer us to the hospital in the neighboring town to put him under the Jaundice lights because his levels were climbing. (We fully believed if they had sent us home he would have died before going to see our pediatrician in the morning, so the raised Jaundice levels were a blessing) The pediatrician I spoke to earlier was at this hospital. She fully believed he had some kind of infection and started running a slew of tests, including a spinal tab (which took three tries to get to test for Meningitis). He had to be put on oxygen. If they touched him too much he would panic in a way and almost stop of breathing. I stood by him to talk to him, sing songs and try to hold it together. At one point he threw up green vile and at 4am I was sending messages to my parents, siblings and best friend because there was nothing I could do. I was his mother and I couldn’t do a thing to make him feel better, I felt helpless as my newborn struggled.
My husband found a sitter for our kids and joined me at the hospital. It was his last day off before going back to work. Another doctor ordered an Echo on his heart, which is like a live x ray. A third doctor came in to review it with us. He watched Eli’s heart beating and said there was an area that seemed a little smaller than it should be but not too bad. He sent a text on his phone; two more doctors came in. I started holding back tears but they forced through anyway; my husband too my hand and I looked at him and he knew too, something was wrong. We didn’t need words to know that our world was about to change. A fourth doctor came in, the one that had been overseeing Eli. He told us that a Cardiologist from Salt Lake City’s Primary Children’s Hospital came up two days a month to see the heart patients in the area so they wouldn’t have to travel. He was there that day and was about to come in and look at the Echo. (This is honestly the greatest blessing in all of our experience, who knows what could have happened if he had not been there) Dr. Williams came in, we had been looking at the Echo for about 10 minutes although it felt like so much longer, and within a minute he had made the diagnosis.
“Your son needs heart surgery. He needs to be life flighted to Primary’s today. We are going to get him fixed. Let me tell you what is going on.” I cried the ugliest cry of my life into the palms of my hands. My husband held me and broke down too. The condition we were told is a Coarctation of the Aorta. He also had a defect called a Bicuspid Aortic Valve. The Coarc is a blockage in the Aorta. While in the womb you use a valve called a PDA. After a week of age it slowly closes. When Eli’s started to close, the Coarc made it so there was not enough blood flow to his lower body, making him go lethargic. Along with that, the Coarc also makes a portion of the Aorta too small.
Eli and I were life flighted to Salt Lake City. It was a whirl wind. I had to be weighed for the flight, we had to make arrangements for our children, prepare ourselves mentally for the surgery and come to grips with our sweet baby having a lot of pain and procedures coming up. The whole process started at 9pm on a Sunday night and by 7pm on Monday we were in Utah. It was so fast. I had not slept the night before and was beginning to fall asleep while the nurse explained everything. My husband stayed behind to get our toddlers off to friends and family, take care of the house and then drive down.
Tuesday and Wednesday were spent just sitting at the hospital. We were blessed to get a room at Ronald McDonald House, so close to the hospital. We had to buy clothes because my husband had to pack in a hurry. Ronald McDonald House had a “family room” in the hospital so we could escape at times to decompress, eat and even nap and shower. Our days at the hospital were no less than 12 hours and averaged 14. We don’t know what we would have done without it. Eli had to receive so many pricks and pokes I couldn’t watch.
After a few days of being on a medicine to force the PDA valve open and building up his strength a bit, Eli had Open Heart Surgery on Thursday, September 11th. We have never been so scared in our lives. It took 5 hours and after 6 we were able to go to him in his room. When the surgeon came in to tell us how it all went we were hardly breathing. He said that Eli was lucky to be alive that day for surgery, even with all that they had been doing the last 3 days. It was the worst case of a Coarctation he had ever seen. He showed us pictures of Eli’s heart, the Coarctation they had cut out of it (completely removed it) and then they added a piece of cadaver donor tissue to his filleted Aorta to make it bigger. The sight of our baby afterward was scary and wonderful all at the same time. They told us if you have a heart defect, this was the one you wanted.
We were in the hospital for another week before we went home. He did so well. He had to be on a feeding tube because he had no strength to eat. After a week and a half home he was off of his feeding tube, we were told to expect several months. A week later he was fully breastfeeding, again we were told several months for that as well because he would be weak for so long.
Eli is now about to be three months and is just like a normal baby. He is happy, bubbly and content. We have been so blessed to have him alive and well. We saw so many babies in worse shape and still pray for them and their families. The family and friends that came to our aid is something we are eternally grateful for. Our family was showered with kindness and generosity.
We had to wait a little while before taking him from the house, but I was so excited to have his pictures done! Kayla, with the help of Heather, took his newborn pictures at exactly 6 weeks old. It was a wonderful moment. Kayla has always captured our family perfectly and I knew she would take memorable photos and highlight his scars in the most beautiful way. They are a part of him now and his story. I brought our bottle of hospital hand sanitizer to avoid germs and they didn’t even flinch at using it every couple of minutes. We call Kayla a friend in our home and look forward to all the future memories she will give to us as our children grow. Thank you Kayla, and Heather, for the gifts you have given us.
This session was special and different in that Eli had to be shielded from germs until this coming Spring. So we sanitized our hands constantly and like all newborns kept him warm with a heater and heating pad. We took some photos with Isaiah and Lilly so there would be pictures of all three of them together. I just can’t believe where the time has gone! The sweet blue and green hat he is wearing his big brother wore as a baby at six weeks old so I was so happy when Bethany wanted to use it. She likes to tie in pieces of past sessions to add a memorable touch and to show the growth they gone through. It was a fun session but more than anything it was like a victory because this session almost didn’t happen.
Congratulations Bethany and Steve on your sweet baby! We are so happy he is healing so wonderfully.