Meeting the man who would literally touch our sons heart

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October 14th

Ollie was now one day old. I was released from the hospital and was free to spend as much time as I wanted with my new baby. It was early in the morning and I was anxious to see him. The nurse greeted us and I asked if I could hold him. She said “of course!” She asked me how he preferred to be held and which side I was comfortable holding him on. I replied, “I am not sure, I have never held him before!”

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David and I took turns holding Ollie for a few hours and then Ollie and I said goodbye to David. He had to head back to school for a few days. At this point we didn’t know what surgery Ollie would be having. We were still praying that it would be the simple procedure done in the cath lab. Doctors came in and out looking at his echoes and labs. I was still fighting a horrible headache, but by strength from my Father in Heaven I was able to push through it. During the rounds that day a team of 7 or 8 people came into Ollie’s room. They started talking about “baby Lish” and his condition. They discussed the condition his heart was in and how he was doing as a whole. They kept referring to his condition as Hypoplastic Left Heart Syndrome and up to this point we thought it was Aortic Stenosis that could possibly lead to Hypoplastic Left Heart Syndrome. Hearing them say he had HLHS sounded like a swear word. They said he would be having his first open heart surgery on Wednesday morning. I had to turn away from them. I silently cried and sent a text message to my family telling them that he did have HLHS and he would be having his first OHS on Wednesday, October 16.

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He would be 3 days old the day of his surgery…and it just so happened to be my 23rd birthday. The thought crossed my mind that he may die and my birthday would become the worst day of my life. After the team of doctors left I held him for a few more hours. I got to “practice” breast-feeding him. They call it non nutritive breast-feeding since my milk hadn’t yet come in. At this point he wasn’t allowed to have any food. He was getting nutrients intravenously. I took so many pictures as I held him.

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It was a peaceful day. I knew we still had 2 days till he was to have his surgery. My heart mom friends told me to take pictures of his chest without the zipper scar. I kept looking at his perfect chest and couldn’t imagine him with a scar.

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At the time I did not let myself think about what they would be doing to him during surgery. I didn’t allow my brain to think about ANY of it. I knew I couldn’t handle it. Looking back on the situation I know that I was protected from any of those thoughts. I can now handle thinking about bits and pieces of it.

The two days before surgery were spent holding Ollie and watching the “goings on” in the CICU. Each child in there had their own nurse. I started to recognize the faces of other parents as we were all coming and going. A few would even go on to be my friends and I didn’t even know it! Each child had multiple IV’s, tubes, and gadgets. The beeping of the monitors was enough to make anyone go mad. I spent my time asking questions and getting to know each of Ollie’s nurses. At night we slept at the University Guesthouse Inn. It felt like a Taj Mahal. Sitting in the hospital was uncomfortable and exhausting. I hated leaving Oliver at night because I didn’t want him to be alone. I felt very guilty and couldn’t wait to get back to him after being gone all night.

On Tuesday afternoon I couldn’t handle the headache anymore. I went back to my hotel room to sleep. I was getting anxious for the big day. I was awakened from my nap to my phone ringing. It was an 801 number and I was scared something was wrong with Ollie. I answered it and a man on the other line asked if I was Mrs. Lish and told me he was my sons surgeon and he was hoping to talk to us before surgery the next morning. I told him my husband would be in town any minute and we would head right over. As soon as David got there we hurried to hospital. We were extremely anxious to meet the man who would hold our sons life in his hands. He was a tall man. Young. In his 30’s. He was kind, you could tell instantly. He drew a picture of Oliver’s heart on the chalk board and then erased it and drew what it would look like when he was finished. He told us of all of the risks that come from a surgery like this. Some were: risk of stroke, slight chance of acquiring a disease from the blood transfusion, dangers of being on bypass for an extended period of time, risk of changing his cry and losing the ability to swallow….these are just a few of the things he mentioned. I zoned out for some of what he said and just sat there and cried. Luckily David is fascinated by medicine and was able to hear and comprehend what our surgeon had said. We finished with him and spent a few more hours holding Ollie and taking pictures of him. Davids family came to the hospital to also spend some time with us. I left to get some dinner with my parents. I was feeling very overwhelmed at this point and broke down when I got in the back of my parents car. I was sobbing and I told them that I couldn’t do this. I told them I wasn’t strong enough to handle this. As soon as the words came out of my mouth I knew they weren’t true. I knew I could handle it and I would. I had no other choice. After pushing some food around on my plate I headed back to the hospital to spend more time with Ollie. It was very hard to leave him that night. We knew it was important to get plenty of rest but still couldn’t shake the horrible feeling of leaving him. We didn’t sleep much that night. The next morning we were both up bright and early. We wanted to spend some quiet time with Ollie before he was taken back for surgery. We took so many pictures that morning and shed a few tears. We didn’t talk much.

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Our parents came in and our dads and David gave Ollie a priesthood blessing. After the blessing they left us and we said our goodbyes to Ollie. This little infant at 3 days old held both my hand and Davids and let us know that he was prepared and ready for the challenges ahead. I knew that is what he was telling us by the look in his eyes. They were bright and clear. He comforted us that day. I know he knew we needed that message.

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Our nurse came in and told us we could walk with Ollie to the surgical unit. Once we reached our destination she told us we could kiss him goodbye. I kept telling him that he could do this and he was so strong. We kissed him and took some pictures and then walked out.

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Thus far in my life this has been the hardest thing I have ever done. At this point I broke down and David and I stopped walking and held each other for a moment. He told me it would be okay. We walked to the surgical waiting room and met our parents there. The waiting game had begun.

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4 thoughts on “Meeting the man who would literally touch our sons heart

  1. Erika Christiansen

    I cry through almost every post you publish. You and your husband are amazing and I am sure The Lord knew your strengths and blessed Ollie to be your child. Your posts are beautifully written. Thanks so much for sharing! You have sure been through a lot and I am so happy that you have your beautiful baby boy today!

  2. Alicia Williams

    I know how difficult this can be, I spent 4 months in the NICU with my daughter Jaya after I lost my firstborn Jada. There is nothing that could have prepared you for this or the road ahead. Taking one day at a time, maybe even one minute at a time and continued faith in God. This is the only thing that got me through it. I remember not feeling strong, but The Lord is carrying you right now and giving you strength, let him. Trust in his will, and show your love and gratitude to those around you. They too will lift you up. I know it is hard to do but take time for yourself, if you do not remain in good health how will you care for precious Ollie and the rest of the family. My prayers are with you during this tough time.

  3. All your posts give me strength! My son was diagnosed with HLHS at 21 weeks, it’s been the longest/heartbreaking two weeks for us. Prayer and finding blogs like yours has helped me though it. Thank you and God bless your beautiful famiy ❤

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