February 10th 2014
Oliver had a sedated echo today. The results weren’t exactly what we wanted to hear but it could have been worse. His heart function is decreased. It isn’t squeezing as efficiently as it should. He is getting put on blood pressure medication so his heart doesn’t have to work as hard. I am surprisingly not too sick about it. I am learning to have faith that ALL will be well. I know this. Oliver has work to do. David headed home this morning. He couldn’t miss school. It hasn’t been too bad being here alone. My mom and dad will come get Ollie and I tomorrow if we get to come home then. I am praying we do because I know he will heal best there.
February 11th 2014
We got to go home today!!! Oliver is amazing. I am in awe of courage and how brave he is. I can tell he is still in pain and that is hard for me to watch. I have this weird feeling that he is actually our kid now and we get to call the shots. We won’t have to weigh him every day and we get to choose what form of “feeding” is best for him…and best of all is his next surgery should be a few years out! It feels good.
February 16th 2014
Oliver seems to be doing a lot of screaming lately and not much else. I feel that David and I are approaching our breaking point. We are both exhausted.
As I searched through my journal before writing this post, I noticed a theme. It was that life after the Glenn was not easy. In fact, the 4 months following the Glenn were the hardest 4 months I have ever lived. Oliver acted as if he was in great pain. There wasn’t much sleeping at our house. David and I had no other choice but to carry on and push through it. We did all we could to make him comfortable. We said many prayers that we could get some sleep. It seemed as if they weren’t being heard. Nights were spent taking turns holding Ollie as he screamed hysterically for hours. I do not know how we managed, but somehow we did. Many times I found myself thinking or saying aloud “I never ever want to relive any of these moments”. I feel guilty about that now but in the moment it is how I truly felt.
Days after the Glenn were spent managing Oliver’s pain and trying our hardest to get him on a schedule. As new parents we were discouraged that we couldn’t nail down a schedule with him. I constantly compared him to other kids and felt we were failing as parents. He ended up sleeping in our bed. We were scared to have him in his own bed as he was attached to oxygen 24/7. This was probably a mistake but it was the only way we could get any sleep. I can look back on our situation now and know that we did the best we could.
Oliver had an echo a few weeks after being released from the hospital and it revealed that the blood pressure medication was working and his heart looked much better! It was exactly the news we were hoping to hear. He was also cleared to just wear oxygen at night. We were grateful that we wouldn’t have to lug an oxygen tank around with us anymore! It was moments like this that I had the thought that I would never be able to repay my Father in Heaven for these blessings.
I have found that when we go through challenges, God puts people in our path that either need us, or we need them. On April 5th I had one of these experiences. My journal entry goes as follows:
I had an interesting experience today. I went to a party to get suspenders for Ollie and the people hosting the party started asking me questions about him. I was asked where I had him and I told them down in Utah. They then asked why and I told them that he had a congenital heart defect. The woman that owned the house and that was hosting the party told me she was a nurse and asked what was exactly wrong with him. I told her he had HLHS. She was silent for a moment and then she replied that her daughters baby was diagnosed with HLHS 2 days ago. It was crazy! They asked me questions and got to look at Ollie and talk to him.
I felt so compelled to go to this house party to get Oliver suspenders. It was way out of my comfort zone to attend a party at some ones house that I don’t even know but for some reason I was adamant that I get him suspenders! I am so glad that I listened to what I now know was the spirit.
All in all, life after the Glenn was difficult at first. We have however made it to the stage called the “heart holiday”. This means that there aren’t any surgeries in our near future and life seems and feels pretty normal. I cherish this heart holiday and try not to think too much about what the future may bring. Oliver is now 18 months old. He is a tornado. He has a strong spirit and personality. He is not phased or slowed down at all by his little heart. Even though he makes us tired, we cherish each day we have with him. In the heart world we are faced with death constantly. It is on these days that I thank Heavenly Father that Ollie is still here with us, that I hold my head up high and hold the tears back, and take life one day at a time instead of dwelling on the future. I have a long way to go still, but I am to the point now where I can deal with this. I can deal with it because I have knowledge that God lives, that Jesus Christ lives. There is life after death and it came through our Savior Jesus Christ. I am comforted by Jeffrey R. Hollands words in a conference talk titled “Like a Broken Vessel” I think of these words every day.
“I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last”