Detour to Heaven

It is with great pain and sorrow that I inform you of Grace's passing on Saturday morning. I know for many this will come as a surprise. Unfortunately for us, she started to decline on Thursday.

As shared before, Grace has had many struggles with breathing. On Thursday morning I was awoken by Holly saying that Gracie wasn't breathing. I jumped out of bed, went into her room, laid her down on the changing table and proceeded to give her mouth-to-mouth resuscitation. After a few breaths she started breathing on her own. We called the Hospice nurse who came out and saw her. She checked her lungs which were clear and her overall status seemed ok. The rest of the day was good with no further problem.

On Thursday evening, Gracie and I got in the tub for bath time. As I held her Holly helped wash her. She loves bath time and was enjoying it very much. Afterwards we dressed her and prepared for an out-of-town friend coming to visit. During the visit Gracie was very engaging and enjoying being held by a new friend. After about 30 minutes we laid her down on her play mat and we sat down for dinner. A few minutes later Holly wanted to get a little wedge to put under her so she would be more upright. When she lifted her up she started to choke and spit-up. Almost immediately her color started getting pale and blue. I rushed her into the nursery and put her down on the changing table to start mouth-to-mouth. She was not responding as well as she did earlier in the day.  I had Holly call 911 while I continued to work on her. I'd get a little breath every 5 or so seconds, but not much more. By the time the paramedics arrived, a few minutes later, I got her breathing, albeit faintly. They started hooking her up to monitors and checking her. We informed them of her code status and they called the hospital for further advice. We were told they don't normally transport hospice patients to the ER, but would if we wanted. Since the ER visit last week offered little help we didn't think it would be any different this time. And by now she was breathing well enough to let them go and care for her ourselves.

Holly and I changed her and put her on oxygen in her crib. She seemed to be breathing ok for a little while. After a few hours we could hear some moisture obstructing her airway. We suctioned her out but it still continued. It was at this time we decided to put her on her side. Almost immediately her breathing was clear and unobstructed. It was around this time she fell asleep and never really woke-up again.

Holly and I slept on the floor in her room that night. She slept all night with no incidents. We continued to feed her but cut the volume back considerably. We also only gave the essential medications. On Friday morning we called and requested a Chaplin to visit us and say a prayer for Grace. Later that day the Hospice nurse came back out to see her. She felt Grace's condition had deteriorated and prepared us for her end of life. As you can image this was very hard to hear. She stayed a couple of hours and helped us with some other things including doing a memory mold of her hand and foot. Our dear friend Jamie had given us the memory mold kit when Grace was first hospitalized. We never got around to completing the project. We thought we had time.

That evening Holly and I called our friends Russ and Audrey and asked them to help us. We also asked if they would like to come over and see Grace. Without hesitation they said yes and were on their way. Grace was not doing well. Even though she was breathing ok on her side and tolerating her feedings and meds, whenever we rolled her over for a couple minutes to change her diaper her breathing became obstructed. I think it was at this time it really began to set in with Holly and I her time was coming to an end. Even though we had each other, we were scared to be alone. So we asked them to stay over that night. We also called some other close friends to come over and be with us. They were all great. They did everything for us allowing Holly and I to stay with Grace.

On Friday night Holly and I slept in Grace's room. She did pretty good over night with only a little fussiness early in the morning. Holly fed her and stayed up with her. I got up shortly thereafter and we talked about her current condition. Holly noticed her breathing was more shallow and infrequent. Around 8:30 am Holly and I were trying to decide if we should feed her at 9 and if so how much. We were both sitting in chairs next to her crib so we could caress her and talk to her. I wrapped her right hand around my index finger and we were both looking at her. At 8:44 she squeezed my finger and the most beautiful smile we had ever seen came across her face. Her grip lightened and within seconds the color in her face began to fade. Holly and I looked at each other as if to say, did you just see that. It was the most beautiful thing I have ever seen in my life. We believe that Grace saw something so beautiful and peaceful enough to let her know it was okay to let go.  What that was, we will never know. What we do know is that she did this for us and it was the greatest gift. We were so grateful she went peacefully without any discomfort.

Because of her fragile state for the last 36 hours we didn't dare move or hold her. So after she passed I picked her up and placed her into Holly's arms so she could sit and hold her. We called our friends into her room and we all knelt in front of Holly with Grace and cried. It was such an emotional time for all of us. We were so grateful to have our close friends nearby and able to share this precious time with us.

Emotions ran high for several hours afterwards. The culmination was when I wrapped Gracie up in her blanket and we all walked outside to the funeral home's hearse. I gently laid her down on the gurney and held Holly tightly in my arms. As they slowly drove away our friends embraced us as we all cried helplessly. We felt so empty and sad at our loss. We lost our precious baby who was so innocent and pure and who brought so much love to others.

I know our loss pains us greatly. But we also have great solace in knowing we gave Gracie every ounce of our love. We took the best care of her we could. I know she felt our love as we felt hers. It will take us a long time to get over the pain of our loss. But we will never forget Gracie and all she has brought us.  Our Grace was truly amazing and we are going to do everything in our power to make sure the wonderful memories of Grace live on forever.