Tuesday, July 30, 2013

A Lifetime

This is my second go at explaining what we went through those four days at the hospital. Version number two is a bit less detailed, especially on the medical side, but my hope is that I'm still able to share our experiences with you. Id like to remind you that these are my memories as I see them today. My feelings and outlook will change as my grief grows and changes. Please be gentle with me, my rambling, and my confusions. I warn you not to read this if death makes you extremely uncomfortable. Know though there was nothing but four days of love for our boy.

 (And as always excuse the fact that I typed this with my thumbs on my phone ;) )

Our Four Day Stay:
Every day was filled with cuddles and love from visitors, especially the grandparents and aunts and uncles. Jack and I both had around the clock nurses to tend to our every whimper. Due to the special and rare nature of our Labor & Delivery unit we were the only patients and so lots of extra love was given. We can never express our gratitude for the level of care we received. 

Day One: that first day Jack was born was the best day of my life by far. My sweet boy was out and alive and cuddled in my arms. My bff photographer took so many hundreds of pictures that I will treasure forever. We just lived in every moment and didn't think of or discuss the next day. Through that first day I couldn't get out of bed after my surgery, but wasn't sore due to the Spinal medicine still being in my system. Jack had a nasal cannula on that first day that was sending forced room air (not oxygen) but we ended up taking it out because we weren't sure it was doing much anyways. Other wise he just had some sticker ports measuring his stats which stayed quiet and consistent all day. 
We decided to go ahead and bring our two older children to meet their baby brother. Our one year old loved him. He smiled and pointed and kept saying "baby" and wanted to touch Jack. Our three year old cuddled on him and even gave him his bath, but I felt in my mommy heart that she was reserved. I feel that she knew something was different. Something was to be worried over. She still loved on him, but it was a more humble quiet love. 
That night we decided to insert a feeding tube and try a very small bit of formula. I went back and forth about if I should pump. I didn't want to start my breast milk if I wasn't going to continue it, but I also had major mommy guilt, I wasn't even comfortable voicing my rationales out loud, but luckily my husband didn't ask questions and just allowed me to do as I saw fit in the moment. So I didn't pump right away. We decided to use the feeding tube and not even attempt oral feeds until we could later be sure Jack's air way was protected. I didn't want to take any chances with aspiration. Jack peed and pooped that first day and so that was wonderful. My family was so sweet with Jack and everyone just loved having him. That first night was a bit rough, but not too bad. We fed him via tube every three hours, but he also didn't sleep very solid. All I would have to do was bounce him a little when he'd wake and sing to him and he'd go right back to sleep. He slept in my arms. Jacks night nurse also came in and held him next to my bed for 45 minutes while daddy and I slept a bit. That was sweet. I didn't want to send him out and he didn't like being set down. So mommy, daddy, and Jack were spoiled rotten and she just stayed there in the dark with us for a few.

Day Two: It was much like day one. Lots of love. Lots of talks and songs and rocking. Our exhaustion levels were through the roof, but we had the rest of our lives to sleep so we did not care. That second night Nana (my step mom) stayed with us so she could take turns holding and calming Jack's fusses so we could try to sleep some. Often daddy and I would sit together in the hospital bed and hold Jack and tell him how proud we were of him. Even when he started to have troubles we just loved on him. Our fighter boy. 

Day Three: Friday morning one of Jack's nurses said maybe we'd like to take him outside. The hospital chapel is beautiful and has a court yard. We were thrilled and hadn't even considered this an option, but loved for Jack to have this opportunity. It was like a hundred degrees outside so we knew it wouldn't be a long term activity, but were ready to allow God's sunshine to poor on our baby. Jack and I were wheeled down by my nurse and his, and my husband and his family came along. Once outside we took a picture or two and daddy picked Jack out of my arms to cuddle. Jack had some trouble breathing and so daddy and I took him inside just us two and sat in the AC chapel in a pew at the foot of the alter and cuddled and prayed for our sweet boy. We wept. Jack cuddled to us so fiercely. He loved being held. We adored each other. Throughout Friday Jack continued to get his feeds and continued to pooper (which he demanded to be changed immediately) but at some point Jack stopped peeing after day one. The doctors think it could either be his kidneys shutting down or his brain not telling them to function. That was a very scary point for me. Even though all of Jack's health behaviors were not 'normal' I had somewhat been living in a dream world and then I was quickly reminded that time may very likely not be on our side. My boy was having health issues. My boy's body was... Failing, I guess. :'( Through each and every decision there were doctors and nurses discussing the options and possibilities. We had also prayed over all interventions and studied greatly before Jacks birth. Jacks post birth ultrasounds were helpful during all choices as well. Jack was constantly held and sang to and talked to by myself and my husband and our parents, our siblings, and friends as well. 
That night Mimi (Husband's mom) stayed with is in the hospital to take turns holding him. It was a harder night, but still considered a blessing. Just thinking about all this breaks me. oh :'( I love him so much. My heart bleeds with pain at the extent of my love. 

Day Four: Throughout Saturday Jack would have troubles more often. It was difficult. It was confusing. But we were with him. We loved him. His family loved him. Jack came back fighting over and over. That night, at 7:02pm, Jack had not been breathing for an especially long time. When we asked the nurse to listen with her stethoscope she said, "Im sorry. I no longer hear a heart beat. I will get his doctor." We all wept, but waited. I just held him and waited for the breathing. I waited for him to be ok again. Surely the nurse was wrong. Surely. I just said, he needs to be checked again. Again please. The doctor came and listened for the longest five seconds of my life and simply said, "Im sorry. He has passed." Daddy prayed. My heart floated up to Heaven to live there with my boy forever. We went back and forth between sobbing and hugging and staring. All of our parents and our siblings hugged and cried with us. It happened right at shift change so jacks and my day and night nurses came in and shared tears and love. Thankfully my mom was able to be there. She had been staying at my house with my two older kids and switching out with the other gparents to come see us. Not so great was that at this time my two older kids (1&3) had come to say hello and were in the waiting room with Nana. We of course didn't bring them in to the room now that Jack had grown his angel wings, but my momma still had to go home with them and attempt to hold it together. I wanted them to feel only happiness and not know of our grief until mommy and daddy could be there to stay and hold them. After Jack's spirit left we kept holding him and organized memory boxes for the grandparents. The nurses came in and did beautiful plaster molds. My dad took care of organizing with the Chaplin on having Jack picked up that night instead of me having to give him to security or the morgue. My dad, the Chaplin, and my and Jacks night nurses arranged for a better goodbye. That night, at midnight, Jack's nurse wrapped him in a warm blanket and Daddy and I loved on him once more and then I handed him to my father. A very loving and proud grandpa. My dad and Jack's very loyal night nurse (mary) then took him themselves down to where the funeral home was waiting to pick him right up. With empty arms, my husband and I showered, took some sleeping pills, and went to bed together where my amazing night nurse (stacie) had pushed two beds into the hospital room. The nurses hung a butterfly on our door so as to ask for privacy for grieving parents. We slept for eight hours, woke, packed our bag, packed Jack's overflowing bag, and together with our parents left the hospital fetal health center room 3, and went home holding two plaster molds, a butterfly, and each other. 

5 comments:

  1. Oh Rachel- I cry for you. For your pain and sorrow, for the short sweet time you got to spend with your sweet boy, but most of all for the over flowing love that your family has for each other. Your pictures are priceless and the love that flows through them is indescribable. God bless all of you during this difficult time. You guys have been in my prayers daily and will continue to be.

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  2. Shedding tears for you sweet friend. Jack touched so many lives in the short amount of time he was here -- including mine. He was such a strong boy and gave so much love. I know you are a proud mama. I can't even begin to imagine the grief you must have right now -- missing your sweet baby boy. I am so sorry and am praying diligently for you and your family. God bless.

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  3. I know the pain and heartache that you are feeling. Lifting prayers for you in this intense time of grief. -Aly

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  4. Rachel, I read this through tears for you, Patrick and the whole family. Your strong baby Jack has touched so many lives and continues to through your writing. You were gifted with him and God couldn't have picked better parents for Jack. My heart goes out to you. I know you will cherish every moment you had together, continued prayers for you. God bless you all.

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  5. Oh Rachel. This breaks my heart so I can't imagine what you and your family are going through. Through this extremely difficult situation, I hope you know how much of an amazing example of God's love you are. You are a strong woman and are a blessing to so many people. All 3 of your children are the luckiest kids in the world to have such a wonderful Christian mom! We are praying for your days to get easier. You guys put together an amazing memorial for Jack! :)

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