If you are a parent expecting a CDH baby or if your baby is still fighting, you may want to skip this post. If you choose to read it, please know that 50% of these babies DO survive. Do not lose hope.
Grace Fenella Hall born March 27th 2011 passed very quickly and peacefully on August 9, 2011.
Nobody is really sure what happened. I called to check on her around 11 am, I didn't have childcare for the boys, so I was going to head up after Adam got off of work, getting to her around 5:30 or so. At 11 she was fine, she was laying on her back in her bed looking at her beautiful self in the mirror. She loved looking at herself in the mirror. She knew she was the most gorgeous girl who ever lived. The boys and I went about our day. Around 2 pm I went downstairs to grab my phone, I was about to call to check on my sweet girl. As I walked into the kitchen it was ringing. Seeing the number was U of M, I didn't worry. There were alot of new CDH babies, a few in her room and I just figured the nurse was calling to let me know that Grace's room might be closed when I got there or something like that. It was one of the PA's for the surgeons. At first I still wasn't worried. I haven't worried about Grace for some time. She told me that Grace had been requiring alot more support and medications and that she hadn't been in the room yet but that Ana wanted me to know that Grace had taken a turn for the worse and wondered if I could start heading up. It is at least an hour drive and I had my kids I needed to find a sitter and wait for. STILL I'm not understanding the depth of the situation. When I told her an hour and a half, she told me to bring my boys with me and they'll have someone waititng to take them. Then I knew. I needed to get going. We got in the van immediately and still it took us over an hour because there were a TON of rude people on the road and there were 2 accidents, one was taking up both lanes. It was heartwrenching because I was freaking otu and had my boys. We were all praying, but I knew.
When we got to the hosptial, I parked illegally and we ran up there, in the hallway one of the nurses who's been with us the whole time, though not a primary was walking through. Usually she is very quick to say hi and she saw me and put her head down and kept walking. I went into the unit and Lindsay the chaplain who baptised Grace came to me and said "just wait, Ana want's to talk to you" The social worker walked out and I knew. I knew. Then when I saw Ana, it was confirmed. Ana said, "let's find somewhere to talk" and I don't even know who held me and walked me to the conference room. Ana sat me down and said so sadly, "I don't know what happened, her heart just suddenly stopped"
They brought her to me, and she was beautiful. She had nothing on her face, no nasal canulas with tape, nothing at all. She was perfect. She looked so incredibly peaceful and I really can't explain this, but having her in my arms, she still made me feel so comforted. That's the thing about Grace, she always made me feel better. Sometimes I couldn't get up there to see her as soon as I would have liked and my heart would jusst be so heavy waiting to see her. As soon as I'd get there with her, she just calmed me. She was love.
I held her and loved her and finally Adam got there (I called him as soon as I left, but he works about 90 minutes from the hospital and there were the accidents) we held her and cried together.
We gave her a bath and put her lotion on her and dressed her in a dress and loved her more. The boys had been upstairs playing with the unit host and they were brought down. They took it hard, Tyler most of all. They were able to hold her and love her too.
Alot of nurses came by and one of Grace's primary nurses came and stayed with us.
We talked about what happened. Ana said she had walked by Grace's door to get something from the supply cabinet and Grace was in her swing, being Grace. Perfectly fine. When she turned around, Grace was blue and her stats were gone. That quickly. She doesnt think Grace even knew what was coming. I am thankful she didn't suffer or struggle. They tried for 45 minutes to bring her back and they could not.
Grace was the most amazing gift ever. She showed me more in 4 months than anyone has ever in a lifetime.
We are so thankful for the amazing staff at U of M for giving us four amazing months with Grace. So many people worked so hard to keep her here and so many people loved her so much. She changed lives. To hear a surgeon say that she learned so much from Grace is amazing.
I miss her so much, my days don't feel right without a trip to U of M or pumping all the time for her or waking up and calling to check on her. She was my girl.
We will have visitation for her on Tuesday August 16th from 3-7pm with a small service at 6. Maison Dardenne Walker Funeral Home, Maumee Oh
We will be working on a garden next week in her memory, at our home. Since she is being cremated, this will serve as a memorial place for her.
Thank you all so much for your countless thoughts and prayers over the last four months. To date this blog has over 25,000 hits. I am blown away that that many people are loving my girl and were pulling for her. We appreciate each and every one. We willmake it through this, because Grace is in Heaven right now, with one eye open making sure we are all behaving ourselves and doing what we are supposed to be doing, the right way. She can be as nosy as she wants to be now and can see everyone! She will always always live in the hearts of many. Thank you.