Get up, dress up, show up, & never give up

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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!

 

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Welcome to the “bad news room”

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My options are what? Heart transplant? Liver and kidney failure? Would our baby even have a life? I wanted to tell more about the day we were given our 3 options. I heard a whole lot of worse case scenario and not a lot of hope. I replayed this moment over and over in my head and truly thought that I hated the doctor who gave us the news. I am past that now and know that she was just doing her job. I also learned something about myself. I am a worse case scenario kind of person. As fun as sugar coating is it isn’t practical in a situation like this. I now know that I needed to know EVERY possible thing that could go wrong (and right). This is how I function. At this point I couldn’t take any more medical terminology.  We set our next appointment date for 4 weeks later and left. I shoved all pride aside and sobbed while we walked to our car. There have been two moments in my life where I didn’t care who could see me crying and what they would think…this was one of them. David had his arm around me. When we reached our car we stood there holding each other for a moment. Neither us of could think of anything to say. We had plans to meet my mom and sister at Maddox for her birthday lunch. I knew I didn’t have the strength the call them so David did the honors. When I had composed myself I sent a group text to my family explaining what the doctors and social workers had told us in the “bad news room”. My dad later told me that he tried to come up with something profound to say back but all he could do was sit in his truck and cry. My sisters mentioned similar reactions.

I pushed my feelings aside for a moment and had David drop me off at City Creek to get my sister a birthday gift. While at the mall I saw some family friends from Blackfoot and had to hide. I was terrified they would congratulate me on my pregnancy and I couldn’t bear it. Looking back now I see that this was the moment I made a pact with myself to hide my feelings. To downplay them. This was confirmed when I pushed my mother away at Maddox when she tried to give me a hug. She was crying and I couldn’t look her in the face. I told her not to do this me. I felt like my world was crumbling down around me and I needed my loved ones to be strong.

The next few weeks were spent quietly. I still couldn’t talk about it so I sent a text message to my friends explaining the situation. I told them if people asked about it to tell them for me so I didn’t have to. I could see those who knew about it pitied me. I hated that. I was constantly battling with myself….so many ups and downs. From turning to God and then being angry at him. I found myself jealous of people with healthy children. I told myself that no one understood what I was going through. That all changed when I found other families in the same situation. When they told me “it’s hard but you can do this” or “It will be okay” I believed them. I am here to tell you that this is true. If I could walk back into the bad news room on June 14th I would have told myself to cheer up. I would say “it is going to suck but you can do this. You will be exhausted but you will survive”. To anyone going through a trial right now I am here to tell you that even though it feels hopeless…it isn’t. Turn to your Heavenly Father in prayer and allow your loved ones to hold you up. We all enter a bad news room at some point in our lives. We can choose to face what we have been given, or die trying.

I’m freakin pregnant…

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February 14, 2013. I took a pregnancy test bright and early that morning. I watched as it confirmed that yes, I was pregnant. I didn’t believe it so I took another. Yes again. I walked back into our bedroom and started crying. All I could think of saying was, “I’m freakin pregnant”. I laid back in bed with David and after about 60 seconds came to terms with it. After that we were excited, nervous, and nauseous. I hadn’t been sick at all thus far but magically got sick the moment I found out I was pregnant. My first doctors appointment confirmed yet again that I was pregnant. They estimated that I was only 5 weeks along. I went back a few weeks later and we saw our babies heartbeat for the first time. I was relieved. Little did I know that that heart wasn’t quite right. Fast forward to May 30th. I was 20 weeks along. It was time for the anatomy scan. I was apprehensive about this particular appointment. I was paranoid of bad news. The ultrasound tech told us we were having a boy (We already knew we were having a boy. We went to Fetal Fotos in Utah 5 weeks prior because we just couldn’t handle the suspense) After acting surprised I commented that she must love her job. She delivers such good news! She proceeded to tell me it had a double-edged sword. She had to deliver bad news occasionally. Not long after that comment she asked us if we had a history of heart problems in either of our families. Neither of us had. I don’t remember much after this. I was busy hiding my tears and thinking about what the future could possibly hold. Our midwife was notified and she referred us to a specialist that very day. We were given the diagnosis of Aortic Stenosis and then referred to Primary Children’s Hospital in Salt Lake City. Our specialist in Idaho told us not to google ANYTHING. I stayed away from google for a few days but since our appointment at PCH wasn’t for 2 weeks I couldn’t help it. From my google-ing I learned that Aortic Stenosis was typically done in a cath lab. It was a fairly non invasive procedure where they use a balloon to widen the aorta. I thought this “surgery” would be the end of the world. I couldn’t bear the thought of going through it! June 14, 2013. Our first fetal Echo at PCH. The ultrasound tech poured the warm jelly on my stomach and started moving the wand around. She found the heart and I held my breath. I fully expected her to tell us that it was all a mistake. I had prayed my heart out these last two weeks that this babies heart would be fixed and that he would be whole. My hopes were smashed when she confirmed that their was a problem. The scan took about thirty minutes. We were led to a small room to wait for the doctor to read the pictures and come talk to us. A few minutes later, 3 people entered the room. The cardiologist introduced herself and got right to business. She confirmed that the baby did have Aortic Stenosis…..but that was not all. The left side of his heart wasn’t getting adequate blood flow due to the small aortic valve therefore causing the left side to not grow. At this point we were given three options. 1: Abortion. We were far enough long that we would have to have it done in Utah, not Idaho, and now. Within the week. 2: Comfort Care. If we chose this option we would deliver the baby and bring him home and make him comfortable until he passed away. 3: Surgery. A 3 part surgery that would reroute the entire heart leaving him with one ventricle that would do the work for both ventricles. She told us that we would outlive our son. That eventually his heart would fail and he would need a transplant. That not only his heart would fail but his liver and kidneys eventually too. She talked of feeding tubes and oxygen. I felt as if I had been punched in the stomach. David and I didn’t need to even talk to each other about the option we would choose. We told her we wanted to proceed with the pregnancy. I knew this child was a fighter because I felt him move when we were presented our 3 options. I knew he was alive and that he would fight…and so would we. I held it together till we left that little room and sobbed the whole way to the car. I felt robbed. This was no longer a happy pregnancy. I felt sorry for myself. These feelings lasted for a few weeks but I eventually found peace. I turned to my Father in Heaven in prayer and was comforted. I didn’t know what would lie ahead, but I knew that we could do it. I knew that we were given this trial for a reason. From the start of the pregnancy I found a resounding theme in my life. I am not on my own timeline. I am on Gods. He is in charge.

Our Heart Journey

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When David and I received the news of Oliver’s condition, we were devastated. I felt hopeless. My saving grace was a Facebook group with mothers and fathers of kids with CHD (congenital heart defect) and adults with CHD. I found comfort hearing of others heart journeys. I have decided to write out Oliver’s story in detail from the very beginning. If I can give hope to even one family faced with this trial, then it will be time well spent. Join David, Ollie, and I in recounting the craziest, hardest, and best time of our lives.