A month ago tonight (at about 1030ish) we got THE CALL. I think I will always vividly remember exactly what I was doing when Matt called me, and I knew before I answered it had to be lungs. The past month has been filled with many emotions of the continued roller coaster of highs and lows. But with a whole new perspective than before.
This whole experience is still very surreal. Sometimes I feel like we are living a nightmare, but at the same time its a dream come true. (If that makes any sense). The past 17 months have been so hard, we have felt every possible emotion. Its so hard to even really explain the emotions. But I want SO badly to express them. I remember reading another transplant mom's blog. I think she described it best, as looking in the rearview mirror. I am so thankful we are moving forward, but I look in the rearview as a reminder of just how far we've come. The excitement of being pregnant and the expectation of a healthy baby, the worry and concern when we found out at my 20wk ultrasound that there may be problems then the overwhelming fear and dread that we had during her stay in NICU. We tried to keep faith that she would just grow out of it, but in our hearts I think we both knew she wasn't getting better. We spent so many months upset and sad that we weren't "normal". And the frustration of being in and out of the hospital so much. I look back with some regret, I was so worried about her wearing oxygen and what people thought, that I didn't have her pictures professionally made until she was 6 months old! I remember every hard decision we have made, from an open lung biopsy at 3 months, the feeding tube, trach/vent, and then her transplant. And my heart hurts so much for all the pain she has had to endure, but at the same time I am grateful for that hurt. The hurt I feel I will be a daily reminder to me to cherish EVERY minute I have with her. I would give anything to change the pain and suffering she has endured, but at the same time I am also grateful to have been the one here with her. To witness such an amazing child, fight so hard to live. Its something that I cant even really begin to explain.
As I look back I replay all these memories: Seeing Elizabeth for the first time after being born, not even getting to hold her before she was taken to NICU. How sad and confused I felt when I finally saw her in NICU. The hope and crushing feeling in my heart every time she failed to wean from the oxygen. The day we took home for the 1st time at 1 month old, how scared and thankful I was. Rushing her to the ER after working midnight shift. Crying the whole way to the OR, knowing her biopsy was not going to go well. When the PICU Dr explained to me that Elizabeth had to be on total vent support and paralyzed for the first time. My heart broke. Learning about her lung disease diagnosis and actually having hope that she could get better. Elizabeth turning blue in her car seat in the hospital parking lot, and Matt running with her back into the ER. The day in November when she turned blue and went limp in PICU. That night the Drs telling me she may not make it through the night because we couldn't get her stable enough to fly to Vanderbilt. Watching her oxygen saturation fall into 60s and 40s and wondering just how much more she could take. Thanksgiving weekend when we were on constant watch for ECMO, every blood gas was a pivotal moment. I remember sitting the bathroom floor crying and begging God to give me more time with Elizabeth.The day before we got the call for Elizabeth's lungs, I went for a short run. While I was running I asked God to please give Elizabeth the strength she needed. And to give me strength to make it through whatever her future may hold. And I truly think he has done that. Every time I thought she couldn't take anymore, she has fought harder and harder! These are just a few of the memories that stick out in my mind most. But in all reality I could sit here and rewrite the past 17 months with dates, times, places. Each of these horrific things are etched forever in my memory. But so are the good things. That precious, precious smile she has! The way she smiles and look at Matt when he sings ABCs. Her amazing brown eyes and cute red hair. The unwavering fighting spirit she has. There are sooo many memories to be made with her, and I am thankful for the chance for her future. I am so amazed at her, and so blessed to be her mother. Matt and I have learned so much from her. Everyday we are grateful for her.
Transplant living is not easy by any means, Elizabeth will require multiple medications for the rest of her life. She will have more dr appts and physical therapy than most kids. And she WILL be in the hospital alot. But she will be alive, and living the best possible life we can provide for her!
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