January 17th

Our miracle baby went to be with the Lord yesterday morning. We are heartbroken, but know that she is healed and much happier without tubes in her mouth and monitors beeping all around her. She will always be our first baby and we will love her forever.

I had been planning to write a post about our meeting with her team of doctors on Friday and hadn't gotten a chance. It was an emotional meeting as we were finally having to make some decisions on her future, and ultimately decided that we wanted to keep her comfortable and we wanted to bring her home. The wheels were put in motion to get the equipment needed to set her up at home with the help of hospice. We were comfortable with this decision, although I think I had some hesitations on the emotional side of having her at home and then one day not having her there. At the same time, we were limited to our space with her and the time we were able to spend with her at the hospital so it was going to be nice to have her with us all the time.

Mabel has had lots of visitors over her five weeks here with us. She was not only loved on constantly by us, her grandparents, and aunts and uncles, but great grandparents and great aunts and uncles and second cousins. We are so happy that our families that we love so much came to meet our girl.

Saturday, two of my close high school friends, their husbands, and another cousin of mine came to meet her. All of us went to the hospital together. They typically only allow two people in to visit at the NICU bedsides at a time, but Mabel had luckily had her own room and they were pretty lenient on us. Wanda, one of the friendliest faces in the NICU, was working the front desk on Saturday and let all 7 of us in to see Mabel together. It was fun for us to all be in there and not have to continuously rotate people in and out. Joe and I enjoyed hanging out with our friends for the afternoon and evening.

After saying goodnight to our friends, Joe really wanted to go to the hospital. It was late, but I agreed and we went to see Mabel. She was peacefully sleeping and breathing really well. I am so thankful we saw her that night and gave her lots of kisses.

We woke up around 6:30 am Sunday morning to a call from the NICU. We immediately knew that something was wrong and I answered and spoke to Mabel's doctor. She said that Mabel was having one of her episodes and we needed to come to the hospital. These episodes were something that the doctors weren't able to find an explanation for, but her oxygen levels would randomly drop quickly and her heart rate would follow. They had been able to turn up her oxygen levels and she would recover, slowly, but she would recover. These episodes had just started a week or so ago and I was getting the sense that her breathing was becoming the biggest issue.

We got dressed and to the NICU in less than 20 minutes. As we walked towards Mabel's room, I could see her night nurse and doctor sitting at the desk nearby and I started to cry because I could see her monitors were all quiet. She had already left us.

We are so thankful that she went to heaven on her own time. Joe says that she made it easy on us that way. I know what he means, but there is nothing that really makes this any easier. I do know that she was the most lovable baby which is fitting as her name means "lovable." She was also the sweetest baby and even her little cry made me smile. My darling Mabel, a huge piece of my heart will always belong to you and I look forward to finally being able to hold you in my arms all day every day in heaven.