A Perfect Baby

This is a hard post for me to write. But in order to keep the memory as vivid as when it was happening, I must do it. I find myself getting moments mixed up and I don't want that to happen.

It's a Saturday morning, August 17th. The weather was forecasted to be hot, sunny and humid.
I didn't sleep the best last night. The bed was extremely uncomfortable. Waverly slept on my chest most of the night which I loved, but at times she had rough moments. She gave us a typical newborn night, only a little scarier.
Around 4am, the nurse came in to assess me and that's when I had Jim put Waverly back in the bassinet. As much as I wanted to hold her every moment, holding an extremely fragile baby while your uterus gets "gently massaged", isn't the best combination. I was assessed and then the nurse assessed Waverly in her bassinet. She did well again.
I talked to the nurse about when I would be able to get out of bed, when could I shower. And I guess I misunderstood her because I thought she said I was able to get up and walk over to a chair. And by morning I would be able to shower.
So around 6am, I had Jim help me get out of bed as I struggled to walk over to the bathroom to shower. I had Jim go get towels for me, and that's when I realized I was supposed to still be in bed. Oops. I wasn't supposed to shower until closer to the 24 hour mark. Needless to say, the nurses were impressed with how I was moving around.
After my shower I walked over to Waverly sleeping in the bassinet and I gave her a kiss on the top of her head and told her I much I loved her. She looked so peaceful. Jim showered as I ordered some breakfast. I pulled the bassinet over to me as I sat in a rocking chair. Breakfast came and Jim and I ate while having Waverly was right next to us.  I kept looking at her peaceful face as she slept.
The NICU team came in shortly for her next dose of morphine. The neonatologist came in as well to do his assessment. He was just as impressed with Waverly as we were. I asked how her lungs and heart sounded. He said her heart and lung sounds were not exactly normal, but she was doing really good. We talked about how she had the long periods of apnea when she cried and how we wanted medicine around the clock for her to help with the pain. Because the pain is what was causing the breathing problems. We then asked about what the plan was going to be. The neonatologist said we would see how she progressed over the day, and if she was still the same tomorrow (Sunday), she would be brought to the NICU to be assessed again. After her assessment, it would be up to Jim and I if we wanted her to be discharged with us on Monday on hospice care or she would go to the NICU.
The doctor asked if one of us would stay at the hospital with her, and we told him if we chose the NICU path at least one of us would be with her at all times.
I'm not going to lie, I had a huge mix of emotions after that talk. I was so happy she was doing so good. But I was so worried. How long would she live? Would she live a very long life and be in pain?
Jim and I started discussing how we would bring her home because that was the path we were leaning on at that time. We knew she would need a special car seat. There was no way she would be able to use a typical newborn car seat. I knew the hospital would have something we could use and we would ask the next day.
We had some visitors early in the morning and then shortly after her big brother Maverick came running into the room. It was the cutest thing. He would want to see Waverly's face and try to give her a big hug and then he would go over to his toys to play. He really loves his sister.
Waverly continued to rest in her bassinet. Jim and I were able to figure out how to make her comfortable with extra cushioned blankets and she was able to lay on her back. She enjoyed that and being able to look around.
I talked to the nurse about getting a breast pump because I explained how she was in pain when trying to find a good position to nurse her in. So she got me a pump to use.
I wanted to try to nurse Waverly one last time around lunch time, before resorting to the pump. Lunch time is when everyone would head to the cafeteria so it would just be me and Waverly, but that never happened. We kept getting visitors, I didn't get to nurse her again. I did get to hold her though without her crying in pain, and I was able to change her diaper with assistance. I kept hand expressing milk for her to have. Because the nurses explained that colostrum has the same effect as morphine. She looked so peaceful. When everyone returned from lunch the room got crowded. I so just wanted it to be Jim and I. I attempted to get people out by suggesting that Maverick take a nap.
And this is where my memory starts to get fuzzy. The rest of the day was a whirlwind. And so some things here may be out of order. I know we had visitors in the room. At some point a nurse practitioner from the NICU came in. She asked to assess Waverly. We said of course. They talked about how they liked her name and the decorations. The NP was assessing her and Jim kept chiming in how she would go cyanotic from pain when she was moved certain ways. The NP turned her on her side and she cried out in pain. She turned real cyanotic and her breathing got real disrupted. This is just how she was during the night at times. I told Jim I was going to try to hand express some milk until she could get her next dose of medicine. The visitors left because they could see what was happening. I started freaking out. I tried to get milk into her, but she wasn't taking it. I tried the pacifier, and she just had her mouth wide open in pain. She was so cyanotic and in so much pain. I tried putting her on my chest and then Jim took her. We just knew we were going to lose her. We kept telling her how loved she was. How strong she was. We read her a book. And then we stopped seeing her chest rise. We looked at each other. I cried out. I told Jim to hurry and get Maverick, he needed to be there. I held Waverly in my arms, I kept telling her that I loved her. I wasn't ready for her to go yet. She was supposed to be coming home with us. Jim returned with Maverick and we all sat on the couch in there. Then all of a sudden, I thought I hear her take a breath. I gasped and Jim said "what?" I just shook my head. I assumed it was just a reflex. Then Jim also saw her take a breath. I told him to grab the nurse's stethoscope that was on the bassinet and he grabbed it. He listened to her heart, and sure enough, it was beating. Her heart was so strong. Thank you, God. We kept telling her how loved she was. If it was too much, she didn't have to fight anymore. But soon enough, she regained her color. Her eyes began to look around. Her respirations were not normal but close to it. I told Jim he could bring Maverick back to the waiting room. I just wanted it to be us in the room. We knew her time was coming.
Jim and I just held her sitting on the couch. We gazed at her. Telling her over and over how loved she was, how so very proud we were. We had more visitors come back. We both didn't want anyone there, but at the same time we wanted Waverly to feel the love from everyone. So they came back. Jim was holding Waverly on his lap and Waverly kept looking up at him and she smiled at him. It was a beautiful sight. She sure loved her daddy. Several moments later, without even being moved, she started to cry out again. She started to turn cyanotic again. The tears started flowing. We knew it was coming. Jim told our visitors to leave. Once they left I told Jim I wanted to lay in bed with her. So we all squeezed into the bed and kept telling her how loved she was. We held her so close. Telling her we were so proud, she did so good. She exceeded all expectations. She blessed us in more ways than she knows. We read to her again. We kissed her a hundred times. I told Jim to press the nurse's bell to get her more medicine. Although Jim assured me at this point, she was not in pain. It looked uncomfortable to us, but the respirations we were seeing were coming from the brain stem at this point. I still didn't want to see her like that. So the NICU nurses came in and tried to give her more morphine, which just sat in her mouth. So we swabbed it out so she wouldn't aspirate on it.
This is something that I see in my line of work, the only difference is those people are older and have all lived decades of wonderful years..... not a newborn baby. This was just all so unnatural.
Jim asked if they could give her something intranasally. Even though we knew she wasn't in pain. We didn't want to see her struggle. The NICU nurses said they would grab the doctor and see what he could order.
They left the room and I told Jim to grab our family so they all could say their good-byes. Our family returned to the room and kissed her sweet head. Maverick tried desperately to hug and grab his sister.
 They all left the room and it was just Jim and I again. I passed her over to Jim so he could hold her again. We just kept telling her how loved she was. That it was OK to stop fighting. She could go to heaven and be at peace. She hung on though. I told Jim that he could grab our family again before they all left to go home and say their final good-byes. As long as they were in and out. They all came back in smaller groups. During this, the neonatologist came back and we discussed what different medicine to give her. We all agreed she was not in pain at this point, this is just what the end of life looks like. It was just uncomfortable to watch. Jim kept feeling for her pulse, and he started to notice that is was just about time. He told the doctor it was okay, she didn't need anything more. We thanked hi and he left the room. Then the rest of our family left the room.
Not even 10 minutes since they all left the room, Jim noticed her heart had stopped at 7:51pm. She passed away in a big hug from her parents. She was surrounded by so much love in her final moments. I know she was at peace.
After several moments of just cuddling her on the bed, Jim told the nurse to notify the doctor.
The doctor came up to the room and confirmed that she was gone.
It was such a sad moment. I don't think anyone can truly understand how heartbreaking it is, unless you too have lost your own newborn baby.
We wrapped her in so many blankets and she slept on my chest that night.
Sunday morning, Maverick came running into the room and yelled "seeester!!!!" I was holding her in my arms and he ran over to her and gave the biggest hug. He is such an amazing big brother. We did memory making, handprints/footprints, clay molds and painted. Jim and I then gave her another bath. She honestly looked so perfect.
Sunday night was hard. I didn't want Monday to come. I didn't want to leave her behind. I tried so hard to stay present, but my mind kept jumping to the next the day, they day where we would hand her over. Although we planned this, I really thought she would be coming home with us.
I had her sleep on my chest again that night. I never wanted to let her go. On Monday morning after we got ready, we got Waverly's outfit out. We had bought her this white dress, with a white headband and white socks. That is what she was going to be buried in. But it was too big for her. And it didn't look right. It looked uncomfortable.
So we opted for a button-up sleeper/gown. It was white, with accents of pink. It came with two matching socks and we placed a pink bow on her head. We both cried when she was all dressed. She looked beautiful, absolutely perfect. We were not able to dress her while she was living because of how fragile she was so this was the first time we saw her in clothes. She was just stunning,
We took more pictures. We wanted to take similar pictures to those that we took of Maverick when he was born. My parents and Maverick arrived shortly after and we all loved on her as we planned for our good-byes.
Our psychologist came in bright and early to meet Waverly. We then had our chaplain come in and she left to write a good-bye prayer.
My parents soon left, and it was just us; a family of four. Maverick ran around the room like a mad-man. He ate so many snacks and watched his TV. Jim and I took turns rocking Waverly in the rocking chair. We felt normal, this is how life would have been for us; but God planned differently.
When the discharge paperwork was all done, and I signed the papers, the chaplain returned. We held Waverly in our arms as we prayed. We gave her the biggest kiss and told her again how proud we are and how loved she is. We laid her in her bassinet. We picked Maverick up to give another kiss. We told her we would see her soon. We then nodded at the nurse as she took her from the room. I thought Waverly passing way was the most heartbreaking thing, but no, this was. We quickly gathered our bags. And we walked out of the hospital room with empty arms. Tears flowing down our cheeks as we headed to our car. Yes, we planned for this... but this was just all so unnatural. This is not how things are supposed to work.
It was a silent car ride home. I just kept staring at the sky.

We arrived home and got settled in I started to put up some of our memory items. We then had a meeting with the funeral home. That was hard. What made it better was that by the time our meeting has ended, Waverly had arrived. We were able to see her once again.
Oh how beautiful she looked.
The next couple of days were a blur. Moments of sadness and laughs. Thank goodness for Maverick.
On Thursday we had her funeral and laid her to rest. We surrounded her with pictures, clay moldings of my hands and Jim's hands, a handprint from Maverick, a drawing from Maverick, Jim's wedding band, my wedding veil and stuffed animals. We gave her the biggest kiss before they shut her cakset. That was definitely hard. But I wasn't as sad as I would have thought. I knew she was finally at peace, at her final resting place. I know we will meet again.
Our journey of grief has only just begun and we have a lifetime of grief to go through. I will be posting on this periodically as we go through our journey and to keep Waverly's name alive. But thank you all so much for praying for us. Waverly is the biggest blessing. She gave us more than we could have ever expected.