I need to write as much as possible before the story starts to fade. There are so many moments that stand out in my mind, and so many that I remember when I'm talking to someone. I want every one of those moments captured forever. I'm sure I'll be adding more memories for quite a while.
I can't even remember what I've written so far. And I just can't bring myself to go back and read her story yet.
Abby was doing so well after her birth. I'm so thankful that she was strong, that we felt like she was going to stay with us for quite a while. We embraced the friends and family who came to visit and hoped that everyone would take a moment to hold Abby. She was passed from person to person with love.
Around 4am we finally took Abigail to the special care nursery to have an IV inserted. We had decided to use an IV with saline and sugar in place of trying to feed her right away. The nurses did a great job starting her IV, it has to be a hard job with such a little baby and a mom sitting nearby. They were so loving to her and did what they needed to as quickly as possible.
By 5am we were back in our room getting ready to get some sleep. Abby was a noisy little girl, due to the effort it took for her to breath. Around 6:30am I woke Trever to see if she needed a new diaper and he ended up taking her to the special care nursery (we had a room there as well as our room in the postpartum area). He sat up holding her and loving on her until 8am when the nurse let him know that I was awake.
I'm so thankful that Abigail spent most of her time in our arms. Right now it is incredibly painful for me to close my eyes and picture her bundled up in my arms, or to see her cuddled up on Trever's chest, but I treasure those visions.
Abigail had trouble keeping her temp up, mostly due to how hard her body was working. So she spent a lot of time skin to skin with Trever. At one point the nurse came in and had a bit of a shock to see Trever in the hospital bed seemingly naked. Abigail was so tiny and hidden under a blanket that the scene no doubt seemed odd for Labor and Delivery.
After a loving stream of visitors Trever took Abigail back to the special care nursery to have a feeding tube inserted. The nurse had difficulty with the first attempt, after listening for the tube and then trying to reinsert it they called for an x-ray to confirm placement. When the x-ray came back we were told that it didn't end up in the right place.
During the time that we were waiting for the results the pediatrician watched Abigail stop breathing a couple of times. Up to this point I hadn't seen one of her apnea episodes but I think Trever had. We agreed that they would try to help her remember to breath for 1 minute but that was all. Her heart rate had stayed steady, but that would not necessarily be true in the future.
I didn't realize at this point that her trouble breathing would continue, we were hoping it was just do to the stress of placing the feeding tubes. But hearing about it brought me back to reality. I was so thankful to be able to collapse into my friend's embrace. Abby, one of my dearest friends, was making a visit before she and her family headed out of town... I'm so thankful she was with me. It was nice to not cry alone.
The second feeding tube didn't work either. We figured out at this point, due to another x-ray that the tubes were not even visible in her body. They were coiling up somewhere, probably in her nasal cavity. There was no more hope for having her on a nasal feeding tube. We weren't going to keep torturing her. We had chosen to deliver at a hospital that could not place a g-tube (surgically implanted through the tummy). I'm glad that we didn't have that option as I don't believe she would have been strong enough to live through the surgery but we may have been tempted to try it.
We decided to try to feed her with a syringe. But first we just wanted to cuddle and love on her. Trever was really shook up and wanted a moment to embrace her.
My brother and his wife were visiting. Mike was sitting in the room with us when Abby stopped breathing again. It was horrible, she turned a deep blue/purple, her eyes were open looking around and we could see her heart beating in her chest. I can still feel the pain I felt in my chest, just watching her and crying, feeling so helpless, really believing she was leaving us. And then she started breathing again. And her color turned rosy.
We knew at that moment that her life was changing. The nurse confirmed that this was the beginning of the end. We didn't know if it would take hours or days, but we knew that our hopes for weeks together wouldn't come true.
I'm so thankful that she showed us so clearly that her life was limited. We were able to call our families and invite them back to the hospital to say goodbye. They all came. The grandparents held her and cried, the kids held her and smiled. They said sweet things, said their goodbye's, and sang her songs. Andrew spent a lot of time holding Abby, squeezing her nose, and pulling her hat off only to make sure it got right back on. We were lucky enough to get some sweet video's of the kids with their little sister.
After the family left we had very special time focused on our little angel, cherishing everything about her. We even had the chance to take her outside for a walk. It felt so good to be surrounded by the warmth, and to know that she got to see the greatness that God created down here before she goes to Heaven. What a beautiful hospital campus we have!
We sat on a bench cuddling Abby, and then got the idea that she should pick a flower. She is after all a little girl, I'm sure she would have picked lots of flowers had she had the chance. So we picked her a flower and she held it so sweetly for an hour or so. Held so tightly in her hand and right over her heart. Those moments are probably the most precious of all the memories that we have. We are so fortunate for the amazing hospital and the caring staff.
Although we had originally decided that we didn't want visitors after the family left we decided that a visit from the girls was in order. Beth organized the troops and they showed up in force. Our room was suddenly a celebration... wine, liquor and snacks... lots of laughter and tears. Abigail was passed and kissed, her Aunties giving all their love to her.
While our friends were there Abby had a sad moment. She was laying out on the bed between Trever and myself and she stopped breathing. Her body looked so limp, it was like she was already gone. Except she still had a heart beat. I don't know how long it lasted, not too long, but I just remember feeling like it was such an eerie moment. I haven't asked my friends how it affected them. I'm guessing it was a moment they would have been happy to miss. But there is some comfort to me in knowing we weren't alone in this experience.
After our friends left we prepared for Abby's birthday, making a sign and getting her Sweet Charley B's cupcake out. Our wonderful nurse Chenelle looked for a candle for us, since they are against hospital policy we didn't have much hope, but thought it was wonderful that she looked. When we couldn't locate one Trever decided to make one instead. What a great and creative dad!
Trever rested with Abby, who was breathing with too much difficulty for either of them to sleep. I'm so glad he got that time with her, and sad that I missed out. At this point I had only slept about 2 hours out of 40 hours, so I don't think my body gave me a lot of choice.