In a heartbeat…
Today my baby girl is fighting for her life and instead of begging you to sign up for a virtual race or to buy a t-shirt, I am begging for your prayers. Her heart is strong and functioning properly for the first time in her life. They think her lungs are in shock from the new flow and do not know what to do. This took everyone by surprise because she did so well in surgery and for the first 36 hours after and that is not the typical response to wait a day or so to start. There are no signs of infection, thank God. What ever the cause is, she’s now in respiratory failure.
Today my baby girl is fighting for her life
We checked in on Monday afternoon for all the pre-op fun, that night Lizzie could not sleep so we played and watched Cinderella at 3 in the morning. Most importantly, I pushed aside my normal style of mommying and held her all night. No matter the outcome I will treasure that night for the rest of my life. My sweet, silly girl.
Tuesday morning came, they took us down to the surgery holding area and all of a sudden it was time to go. They gave her a dose of versed and she threw her head back and laughed and laughed and could have cared less when I handed her over to the OR nurse. I think the medicine may have done more to calm my momma nerves than it did to help her. So off she went without me, behind a set of doors I knew she had to go through. No matter what happened behind those doors I knew our precious daughter needed this chance. While she was happy and vibrant and beautiful and wonderful, she reached her peak, without this operation there is no way she could continue to grow and be all the amazing things she has become. I have to keep reminding myself of this.
Lizzie’s hand pre surgery
Lizzie’s hand 1 hour post surgery, love those pink fingers!
While this is the hardest and most painful thing either of us have ever endured, we would go through all of it again in a heartbeat.
There were a few surprises during the actual surgery but in the end it went very well. The surgeon came out smiling and pumped about the outcome. Lizzie did great through the night and the next day was taken off the ventilator. She smiled and reached for me and was comforted by us singing to her and stroking her forehead. On Thursday morning I was able to hold her, she looked at me with her sweet little face and I was in total awe at her beautiful pink lips and fingers and toes. I still am. It was smooth sailing, just like I planned.
Around noon she seemed a little restless so I held her again, I sang to her and she calmed down. She started to act really tired so I laid her back down so she could nap. When she woke up, she never really seemed to wake up. She just stared right through me and her oxygen saturation began to drop. I tried repositioning her and stimulating her to get it to come up, but it didn’t work. She would not track or focus on anything, she wouldn’t flench. Her doctor came by and asked if everything was ok and I said no. He did a quick neuro check and sent her to CT. Having started in the Neuro ICU out of nursing school, all the horrible possibilities went flying through my head. It did show she had a bleed on the brain (more than likely the results of blood thinners from surgery and low platelets), but it was determined to be very insignificant and not the cause of such a drastic neuro change. They monitored her for seizure activity for 24 hours, there was no evidence of seizures, just brain waves consistent with sleep. Only problem is she was awake.
Her oxygen levels remained low. After attempting several other things her levels continued to drop. She became completely unresponsive and her breathing was very labored. Her lungs stopped working and CO2 began to build up in her body, and this caused the neurological changes. So she was put back on the ventilator yesterday. It hurt so bad to have this setback but it was agonizing to see her struggling so. She is resting now as the ventilator does the work for her. Today they had to put her on different ventilator called an oscillator. It basically shakes her lungs promoting gas exchange while allowing her lungs to take a rest. She is completely sedated and able to heal now. Her heart seems to be doing very well and the rest of her body is good too. My prayer is everything remains that way.
The doctors are optimistic, but remain puzzled by the “why’s”. I feel really good about her medical team, there seems to be a genuine love and concern for her by everyone involved. From her cardiac and neuro surgeons to the sweet sweet housekeeper who came in here and saw me devastated. She put her mop down, held me and reminded me that the Lord is with my baby and with me. We feel lifted up by your prayers and we feel held, we are not alone.
This precious child, Susan Elizabeth Fowler, has brought so much joy to our lives. Our family has been blessed beyond measure. While this is the hardest and most painful thing either of us have ever endured, we would go through all of it again in a heartbeat. Just to see her smile, to hear her amazing little laugh, to hear her precious little voice, to see her first steps, to see her boss her big brothers, to watch her melt her daddy, to be her momma. I’d do anything.