March 7, 2022 was the first full day that Micah was in the CICU at Children's Hospital. I had just given birth less than 24 hours before and both my husband and I were completely exhausted. Our parents came down that morning and sat in the waiting room in the main lobby as many other families did since COVID did not allow any visitors up to the patient rooms.
That morning around 8am was the first time we were apart of "rounds" where a huge team of doctors come to discuss the patient and parents can listen in. It was intimidating to listen to all of these doctors discuss Micah's condition. During these rounds all of Micah's machines started beeping and going off because she had a bunch of gunk from her lungs stuck in her breathing tube which they had to suction out several times throughout her stay there. It was terrifying. The main reason for bringing her to Children's was to find out if her lung condition was as bad as what they thought based on the utero MRI. They had so many doctors come in that day between pulmonary and cardiac doctors to try to figure out a way to get imaging done of her lungs, but because her condition was declining they didn't think that moving her to get an MRI would be safe yet. This day felt like one of the longest days of my life. She had issues with regulating her body temperature among other things. We went down and sat with our parents often, who were absolute champs, they spent HOURS in this waiting room over two days. Sometimes, I feel guilty that I wanted to get out of that room because it was time that I could have had with Micah but it was just really overwhelming.
As the night progressed the CICU doctor that would be overseeing Micah had concerns about her lactic acid levels climbing and her blood pressure was low. They had to start her on new medication and lower her oxygen to try to level things out. Although her lactic acid levels went down by morning, her condition continued to get worse. The doctors were really amazing but I felt like some of them were sugar coating what was happening with Micah which was not why we decided to send her there. We needed blunt and honest answers regardless of how much it hurt to hear. The doctor that did the rounds in the morning was more direct with us as far as how things were progressing.
March 8, 2022 was Micah's original due date. This was the second full day at Children's. We had contacted our social worker that Children's had assigned to us that had been with us from the beginning of Micah's diagnosis to tell her how we were feeling about all the conflicting information we were getting and how hard it all was to process and that we needed some answers. Our parents who were again waiting downstairs knew that we were going to have a conversation with the doctor that I had mentioned earlier that did the morning rounds. We told him that we need to make decisions because we couldn't take seeing our baby like this anymore and that we had come for confirmation of her condition. He was so kind, but blunt - which is what we needed. Micah couldn't be taken to get imaging done because they were worried that she would either go into cardiac arrest or have a stroke while in the MRI because as of that morning they had done testing and found that she had developed coronary fistulas. After speaking with him, we knew Micah's time was running out, and we had a decision to make.
My husband and I made every single decision together, and a decision was never final until we both agreed. I couldn't have imagined going through all of this without my husband. We had to make decisions that no parents should ever have to make, but we did them together. We had decided that this was enough and that we needed to take her off of all of the breathing support and medications other than the ones that would allow her to peacefully and painlessly pass.
Going downstairs to tell our parents what was happening and the decision we made was absolutely gut wrenching, it made this all so real. It was heartbreaking to tell Micah's grandparents that this was the end.
The doctors had asked us when we wanted to take her off the supports, and we said immediately. They did ask if we wanted to wait for anyone else to come, but I didn't want my siblings and my husband's siblings last memory of their niece to be this one, they got all of the good stuff before and I wanted to keep it that way. The hospital did allow our parents to come up to our room and they started to take all of the tubes and wires off of her. I remember her trying to let our a little cry but couldn't do much more than that. The nurse handed her to me and I held her and reminded her of all those people I told her about that are waiting for her and that she would be in good hands. I told her how sorry I was. Sorry that this was all we could give her. Just 3 days. We all cried, and we loved on her every second until her last breath. I got to see my mom and dad Kiss her goodbye, I got to see my mother in-law and father in-law kiss her and say their goodbyes. I saw my heartbroken husband hold and kiss his daughter goodbye for the last time. Honestly it was beautiful - she was just beautiful. It seemed like the second they took her off of everything her swelling just went away and she looked like my baby again. She went so quickly, and I felt like that at least made me feel that our decision was the right one, because she was ready to go.. we just weren't. She died at 3:14pm on March 8,2022.
There are so many gaps of memory on these three days. I wish I could remember more. I tried to memorize every detail of her face before I had to give her to the nurse, I'm not sure how long we were with her after she died. I had asked our parents to give us a few minutes alone with her so we could say our goodbyes. I was able to bathe her body before we walked her down to the morgue elevator. All of the nurses were very sweet, and good at what they do but I do think that they are too desensitized to babies dying. The nurse that was with us this day brought in clothing, water, soap, and lotion so I could clean Micah up. The water she brought me was cold - cold water to wash my baby's lifeless cold body. It was a punch in the gut, and my biggest regret is not telling my husband at that moment that I needed warm water to wash my baby. I am not sure if this was an accident or if she just wasn't thinking? But I remember being so heartbroken over this, but I couldn't even speak I felt like I was out of my body. The difference in compassion from the nurses at our county hospital to the nurses at the CICU at Children's was really night and day in my opinion. The nurses at our county hospital felt for this baby and our family so deeply, it was actually an amazing thing to witness. I just did not have that same feeling at Children's.
I wrapped our Micah girl in a blanket and my Husband, and I walked her down to the morgue elevator with our nurse, we had to say our final goodbyes. Even though I knew she was gone I didn't want to hand her over. We kissed her and told her how much we loved her and that was it. That would be the last time I ever laid eyes on her.
My parents drove us home that night. I don't think more than two words were spoken that entire ride. My siblings and one of my best friends had spent those hours cleaning my house, washing our bed sheets, and stocking our fridge with weeks' worth of food. I know they wanted to be there for us when we got home but I wasn't ready to face them, or anyone really. I just needed to go home and sob until I fell asleep, and that is exactly what I did. It was surreal coming home without our girl. It felt so unfair. The next day our families came over to our house to hang out for a bit, but that afternoon we had to go to the funeral home. Something I wouldn't talk about leading up to this, something I would block out of my head any chance that I could, but we had no choice but to face this now.
Our parents had taken care of 99% of all the arrangements prior to Micah dying so that we didn't have to. I can't really put into words how grateful I am for that, but also how sad I am for that. They had to the hardest thing literally in the entire world. They went to different cemeteries, had a dress made for Micah out of my wedding dress fabric, picked out a tiny little casket, every last detail. We just went that day to put our last touches on it. I don't think a thank you would ever suffice; I know it was hard for them - I know that for an absolute fact. No parent or grandparent should have to pick out a casket that tiny. One thing I didn't know until weeks later, was that my older brother was the last one to lay eyes on Micah. He collected items from everyone that they wanted buried with Micah and brought them to the funeral home so they could put them in her casket. I didn't know that they had him confirm her body. It hurts my heart for him. I have wanted to ask him what she looked like her in dress, and other details. But I don't know how to approach that, because even if that killed him to see he will shove it so far down that you would never know. But I also want to thank him for doing that for me, for my husband, and for his niece. In a way I am happy that he was the last person to be able to see her, because Sean and I have a relationship that is just really special. He's one of my best friends, even though we don't talk every day I know if I called him today and needed him to jump on a flight and come home that he would without questions, and I feel happy that the last person that was ever with her was him.
The funeral was beautiful, so many people came to show their love and support for Micah and for our families. The impact that this little girl made on people who never got to physically meet her was truly an amazing thing to see. That day feels so blurry to me, I felt like a zombie walking through the 'viewing' - I was so overwhelmed I couldn't even cry at that point. She was buried at church near our home, where my cousin is also buried. Her service was hard and so emotional because this was it. The bagpipes played amazing grace and Danny Boy, which Danny Boy is a special song for both my husband and me. My dad used to sing it to us kids when we were young, and my husband's grandfather used to sing it to him so to have it played for Micah was a perfect way to send her off. My brother and brother in-law carried the casket down to the burial site. We all gathered around her; the church deacon said his part then my sister in-law read an amazing poem, and my sweet niece read aloud a letter she wrote about Micah. It was so special.
We are now coming up on 3 months without my daughter. Every day has been different. Greif is a pretty crazy thing, because it comes in waves and it is so much more complex then '5 stages of Grief' because you can have all 5 stages in an hour, and then guilt, regret, and just major anxiety on top of all that. You literally have to learn how to live a whole new life because you become a whole new person. Some days I miss her so much that it physically hurts, and I am exhausted by the end of the day. Sometimes I can listen to a song that remind me of her, and it will make me smile, or just bawl but nothing really in between. Some days I feel absolutely nothing. Other days I find myself just begging God to have another baby in my arms, even though I know it will never take the pain of losing Micah. You know, I prayed all day long for weeks before Micah came that we could just have some time with her, just to meet some of our people. I just wanted more time. No amount of time would have been enough, but I am absolutely amazed that God gifted us with the time we did have with her. I wish I would have taken more advantage of it, knowing what I know now. There are some days that I am not sure how I will keep going, but my husband keeps me going, and so do our families, and so does the idea of knowing that one day we will be back with her, and I can't wait for that.
Losing our daughter and going through the months leading up to it made my marriage stronger and us as individuals stronger. I don't think there is anything this world could throw at me that is scarier or sadder that what happened with our child. Nothing scares me anymore, because the worst thing I could have ever imagined happening already happened.
I just miss her.
I miss her perfect little face, her soft skin, her actually kind of big feet lol, her beautiful dark hair. She was a spitting image of her dad - her chin, cheeks, eyes, mouth, literally everything was him. Which is great, because when I look at him, I see a piece of her.
I don't think time heals all wounds. At least I don't feel that right now. These wounds are too deep to ever heal because we can't get her back. Our lives will never be the same because she isn't in it. It makes me sad but mostly angry. I feel like we got robbed of parenthood, and happiness. I just hope that I can learn to live with this grief because I know it's not going anywhere. Eventually everyone else is going to move on, this will be a thing of the past. But not for our families and definitely not for us. I will never stop including her, or talking about her, or thinking about her.
She will forever and always be my first born, my baby girl, the love of my life.
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