24 weeks pregnant
Have you ever noticed amidst your struggles life goes on? When your whole world has been flipped upside down you find yourself asking, “how can everyone go on as if nothing is wrong?” That is how I felt from 20 weeks pregnant until Ollie was 5 months old. I learned how to wake up and show up. I learned how to smile and act like nothing was wrong. I continued my normal routine which consisted of work, sleep and my new normal…..doctors appointments. We saw our maternal fetal medicine doctor every two weeks, our midwife once a month, and made a trip down to Primary Children’s every 4 weeks. Before every fetal echo I would pray pray pray. I would plead with my Father in Heaven to please heal this babies heart and make it whole. I still fully expected the ultrasound technician to tell me that his heart had improved at each echo. I got better and better at reading the echoes and understanding what the heart should look like. I would watch the screen intently looking for both sides of his heart to be the same size. When I saw that they weren’t, I forced myself to focus on the positive notes. His other organs looked great, his heart never looked worse….just bad from the beginning and stayed that way. These were all positive things. After each echo the tech would spend time getting 3D pictures of Ollie. Little did she know that this gave me something to look forward to every few weeks. It was such a kind thing that she did for us. We now have many pictures of our little guy. In the back of my mind I thought these might be the only pictures I would ever get of him. David and I would joke that they felt bad for us and that is why they made such a production of getting multiple shots of our babies face. We also laughed when they would compliment on how wonderful his other organs looked. We took compliments wherever we could get them!!
4 weeks finally passed and we had our follow-up at Primary Children’s. We checked in at the cardiology desk. We sat in the waiting room…not saying much. There were a few families in the waiting room with us. Some of the children looked sick and others looked perfectly healthy. I wished that I could ask each parent what was wrong with their child so I could compare our situation to theirs. It sounds horrible but I wondered if my child would get a chance to grow up and play with toys while waiting for his cardiology appointment too. We were called back and our echo was performed. The heart still looked the same. We were then taken to the bad news room to wait for the cardiologist and other team members. I started to realize what everyone meant when they ranted and raved about Primary Children’s Hospital. They are so involved with each family and leave no question unanswered. We were informed of all housing options. The Ronald McDonald house, many hotels that offer a discount to patients families, and sleep rooms at the hospital. The cardiology coordinator had promised a tour of the CICU (cardiac intensive care unit) after our follow-up. I had eagerly been awaiting this moment. I got nervous as we walked into the CICU. There were doctors and nurses everywhere. Each child there had a small room with many monitors, and tubes for days. We got permission to see a baby right after surgery up close. There were drainage tubes coming out of the babies torso, IV’s in multiple places, screens with numbers and letters flashing. The coordinator explained how they would come here right after surgery. She explained that our baby would have a nurse with him at all times. He would be in this unit for a week or two and then get moved upstairs to the floor. We were looking at 3-4 weeks in the hospital after surgery. They would teach us CPR and how to insert a feeding tube through his nose…..among other things (these two in particular just haunted me for some reason). She told us about the high risk clinic and how we would weigh Oliver every day. We would check his oxygen saturation with a pulse oximeter. We would report to the nurse practitioners once a week with this information. I was completely overwhelmed. I held back the tears. I could not picture us being in this place with our new baby. I was certain he would be healed and we wouldn’t need any of this information she was giving us. I remember feeling bitter toward this kind woman and have since found out that she has a heart baby of her own. She understood all of the feelings I was having. Another lesson of many I have learned from this trial is not to judge. We are all fighting battles and each are hard.
I discovered during this time how blessed I was. I had the best care I could even imagine from my doctors. The girls I work with rallied around me in support. My clients offered uplifting words and encouraged me. My ward was so kind to me. My family…my family stayed positive and did more for me than I can even name. Let your loved ones hold you up during this tough time. It’s so important! If I could have given advice to myself during this time of waiting, it would be this: Rest. Sleep as much as you can and take care of yourself. Life is going to change drastically in 16 weeks. Do not dwell on the future for you cannot do anything about it right now. Take one day at a time. You can and will do this!
Oliver's Twist 