I have been avoiding this post for sometime now. Avoiding the emotions it evokes…avoiding the fact that once I put these moments on paper I am closing a chapter…a chapter that I am trying to keep alive…a chapter that stirs so many different emotions it is hard for me to know even where to begin. I am literally sitting here at my computer…tears running down my cheeks…typing and taking very large deep breaths…thinking to myself, “you can do this.”
You may be asking yourself, “Ashley, if it is this hard to talk about why are you doing it?” This is a great question and to be honest with you…I’m doing it because it’s hard. I’m also doing it because I want to share…and I also know that you all want to know. It is the combination of these that makes me push forward.
I knew these moments would be the most difficult for me to discuss…for it is in these moments that I relive the absolute hardest times of my life. I have never been more vulnerable or weak…I literally had to dig as deep as I could within myself to keep it together during our last few days at Cardinal Glennon. Time almost stood still as hours felt like days…and days felt like years…as we watched our son slowly slip away from us. I became ancient during these days.
Do not judge the bereaved mother.
She comes in many different forms.
She is breathing but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.
Anon
The following below will be the posts that I shared on Jackie’s private Facebook page to keep our friends and family updated regarding his surgeries on the 27th and 28th. I wish that I could know at what times these posts were made but just know that they were over the course of the day and I was hanging on by a thread awaiting updates from the nurse while he was in surgery. I recall being extremely anxious. I also recall wishing it was all a dream…that I would wake up and we would be at home snuggling with our Jackie surrounded by family, friends, and his doggie brothers.
December 27, 2016
“Change of plans. The OR is now ahead of schedule. Jackie had been picked up and has been moved to prep. Mommy and Daddy gave him lots of loving on his way out…now we wait. The nurse will be calling me with updates and I will replay them as they come in.”
“Just got our first call from the nurse, Jackie’s procedure has started.”
“2nd update from the nurse: all is going well, his liver was herniated. They are preparing to patch the hold now in the diaphragm.”
“3rd update: it’s going to be another 3-4 hours for surgery. The lung and liver were connected. He is stable, doing very well, and has only needed a little blood.”
“4th update: great news he will be back in the room in within 30-45 minutes!”
“Update to come soon, hang tight everyone. Just know that he is out of surgery and they are getting him settled into the room.”
It was after this update on the Facebook page that his surgeon came up to talk with us. During his debrief of the surgery he was called back down to the OR. Jackie was losing blood…I broke down…I ran to the bathroom…I locked the door…I sat on the toilet and I cried so hard…I was holding onto myself and I was rocking back and forth…tears flooding my eyes and rolling down my cheeks soaking my shirt below. It was an uncontrollable flood…I prayed that I didn’t lose him on that table…I begged, “Please don’t let him go like this…not like this.” I collected myself the best I could and walked out of the bathroom to find my Husband and my parents. All I wanted was my Mom…I just needed her. I found her…she looked at me…I looked at her…and we just hugged. She held me as I continued to breakdown. I just kept telling myself…not like this…not like this.
I finally pulled myself together and managed to post an update to Facebook. “Jackie started losing quite a bit of blood from his drainage tube. They have to open him back up to see where the blood is coming from.”
I don’t remember breathing…I don’t know how I was even surviving while we waited…waiting for news…waiting for an update…anything…something…it felt like years…and I myself felt like I was slowly dying…slowly dying while I awaited news…wondering if I would see my son again.
“Jackie is out of surgery once again, they had to place packing inside of him to help the clotting process. He is stable and up in the room, we are just waiting the okay to go in and see him. I will provide a detailed account as soon as I can. Keep the prayers and positive vibes coming his way as it is now time to heal.”
I was finally given the update I so desperately wanted to hear. He was alive and I would see him again!
The next posts will dive into the whirlwind of information that we received following his surgeries. I’m pretty sure that as the flood of information was being shared…that at one point…I stared at the doctors with my mouth wide open…complete and utter shock is what I was feeling.
December 28, 2016
“12.27 surgery debrief: okay where to start…to say that this beautiful boy of ours is strong is an understatement. The surgeons found his umbilical cord was also herniated, they clipped it and pushed it back into place. His appendix was actually trying to come out of it and since you do not need your appendix it was removed. From there they went to repair the herniated liver, the liver was attached to the lung and had to be removed and moved below the diaphragm. The lung will leak for some time until it heals and the liver is currently bleeding internally, this will also take some time to heal. Not only was it a surprise that the liver was attached to the lung but the lung was also attached to the chest bone. In additional to all of this, his large intestine and small intestine were also prone to twisting (malrotation – intestinal displacement). They were able to move his intestines to prevent twisting in the future. He has been stitched up…his puzzle pieces have been moved to proper locations and now it’s time to recover.”
I recall not really knowing how to make sense of everything that was told to us. My mind was buzzing in a million different directions trying to understand, trying to grasp the reality of what was actually happening. We had months to prepare for our NICU stay, to prepare for the fact that Jackie had a heart defect, to prepare for the fact that we may not be able to hold him when he was born, to prepare for the fact that he would have surgery…and it would be a few days after birth. All these things we prepared for…we knew they would happen. But we did not prepare for what happened…
So many questions buzzed around Jackie’s room after the doctors left. We all sat in shock…and then we all began to ask questions. How was all of this missed? How has he even made it this far?
My son was completely broken…his insides were all wrong…
“12.27 second surgery debrief: while they were preparing to bring Jackie to his room he began bleeding quite a bit from his drainage tube that they placed in his side. They had to open him back up to see where he was bleeding from. Due to a long surgery and low blood temperature they had to put packing inside of him to help with clotting. He will have to go back to the OR either today or tomorrow to have the packing removed.”
“12.28 morning conversations with the nurses: the nurses told me this morning that the bleeding is under control however his blood pressure is low, he is on full oxygen, and he has yet to produce any urine. The surgeons will be by to discuss what their game plan is for our little fighter.”
“Keep us in your thoughts and prayers. We have a very special boy on our hands and we are doing out best to stay positive.”
“Also as a side note, we received a lot of information yesterday. I asked the docs to provide us with a written account of everything that took place. Hopefully my summer is correct however if not, as soon as I receive the summary I will send a correction if needed.”
“As of now Jackie is on the schedule for surgery at 12 today.”
“Getting ready to head to surgery, I’ll update you all as we get our phone calls. Keep your prayers and positive thoughts coming.”
“12.28 surgery update: just got our phone call from the surgeon himself. Surgery went great, they were able to remove the packing. The diaphragm needed additional patching, his kidneys are now producing urine, and his blood pressure is looking better as well. Hoping for a strong recover. He will be monitored and heavily medicated for the next 24-48 hours.”
“Update: they are worried about Jackie’s kidneys. They really have not produced enough suitable urine within the last 26 hours. They are thinking that with the long surgery yesterday that the kidneys went into shock. We are not sure how damaged they are at this time.”
A roller coaster…riding a roller coaster is the best way I can describe what we all were experiencing. I know many family and friends felt similar as they kept their eyes to Facebook awaiting updates and posts of Jackie. I did my best to keep everyone up to date while we did our best to stay positive for our son, to stay strong for our son. We rode each update for what it was…good news…bad news…great news…heartbreaking news. Up and down we would rise and fall…every second…every minute…every hour…news was constantly changing…but one thing remained constant…he wasn’t producing a suitable amount of urine. With everything that we could have been focusing on…the main focus became his kidneys.
December 29, 2016
“We need a miracle, please everyone join together and pray for our baby boy’s kidneys.”
“Still no pee, vitals are holding pretty steady…keep the prayers coming.”
“Quarters to pee…we are trying all the nurses tricks.”
Never in my life would I have thought that I would find myself praying for pee…but here we were…praying as hard as we could pray. We had a nurse come in and lay a quarter next to Jackie’s bedside. She told us that there was once a surgeon that would pay his patients to pee. So pay Jackie is what we did. We even told him that he would not only have quarters but he would have hundreds awaiting him at home. Friends and family saw the post and started laying quarters out next to their own bedside in an effort to support the cause. We were desperate…we would’ve done anything for him.
December 30, 2016
My next post didn’t take place until December 30th…I wrote, “After a long fight…Jackie went peacefully at 1:25pm this afternoon. He was held the entire time by his Mommy and was surrounded by Daddy and grandparents. He was baptized and read a catholic blessing.”
This is it, this is the dreaded sharing that I have been avoiding for a long time now. I haven’t talked much about the moments leading up to Jackie’s passing and I am sure that many of you wouldn’t blame me for that…it is these moments that tend to haunt my dreams…the late hours of the 29th of December and the wee hours of the 30th are the hardest memories to keep. They are the hardest memories to think about and even harder to put into words.
Jack and I clung to one another for hours. We took turns walking up to Jackie…grabbing his hands…his toes…lightly rubbing our fingers to his hair. Telling how strong he was and how brave he has been. Every hour that passed he looked more and more puffy. He was puffy because the toxins in his body were not being processed by his kidneys and also were not being released…the longer he didn’t pee…the more puffy he became…the longer he didn’t pee the worse his vitals got. It was late on the 29th when his doctor came in and had to discuss with us what this all meant. Meaning that she had to tell us that if his kidneys continued to not function…we would lose him. I never in my life had felt more useless…here I was a Mother to a beautiful son…and I literally could do nothing for him to fix this! Nothing! I couldn’t heal him, I couldn’t make it all better by just kissing his boo boo…I felt like a complete failure. That I was the worst Mom…that I somehow caused this, that is was all my fault and I couldn’t change it. I was screaming inside…I was yelling at God…and I was so ANGRY! This was not supposed to happen! It was awful…every parents worst nightmare was suddenly my reality. Jack and I continued to take turns at Jackie’s bedside, sometimes we would surround him together. We both were in and out of moments of tears. I finally took a moment to read Jackie his bedtime story. Just like overnight before…I read him, “Snuggle Puppy.”
“Well, I have a think to tell you, and it won’t take long-
The way I feel about you is kind of a song.
It starts with an OOO and ends with a KISS and all along the middle it goes something like this-
It goes:
OOO! Snuggle puppy of mine! Everything about you is especially fine!
I love what you are. I love what you do. Fuzzy little snuggle puppy, I love you.
….”
Tears were running down my face…my shirt once again soaked from the flood. Deep down I knew that would be the last time I would read him his bedtime story…
The hours went by slow…we awaited updates…hoping for a miracle. Every update lead us further and further to darkness. It was in the wee hours of the morning on the 30th that Jack and I both knew that Jackie wasn’t able to fight anymore. We knew this was it. Jack walked up to Jackie and he began to touch his little fingers…he was looking him over…soaking up just a little more time with his son. He began to speak to Jackie…he told him that it was okay. It was okay to go. I too came over to Jackie to state the same. That Mommy and Daddy were so proud of him, that he was so brave, so strong…and that we did everything that we could for him…we tried…and that we loved him more than anything in the world. We told him that we would miss him…and in-between tears…we continued to tell him that it was okay…it was okay to go…it was okay to go.
There was a specific vital that the nurses were keeping their eyes on. I don’t really remember what it was exactly but it was a count of something in his blood. Basically it was the level of toxins in his blood because of his lack of urine. We knew that if this number got close to I believe 30 that his body would naturally begin having seizures. We of course, as well as the doctors did not want to see this happen. It was after our talk with Jackie that this levels plummeted. It was time to call the grandparents and it was time to say goodbye.
Grandparents arrived, Cardinal Glennon prepared us all for what would take place. They arranged for a photographer, they arranged for a priest. I felt like my whole life was passing me by…like I wasn’t really there…everyones words seemed to be mumbled. I kept thinking to myself this has got to be a dream…this is not happening. But it was happening…it was and is my reality. We allowed the grandparents to have their own time with Jackie bedside, then we prepared for him to be taken of his oxygen tubes and to be placed in my lap. He was always medicated and it was made very certain to us that he was in no pain. It was the first time I was able to see him without tubes…I was actually able to embrace him. He didn’t look like himself…his poor feet…his poor body…all so swollen. The doctor’s left us with him after we had a few photos taken with him. They would be monitoring him from outside of the room allowing us and the grandparents to spend his last hours with him.
I held him the whole time. Jack stood by my side and the grandparents all sat together under the window. I honestly don’t remember everything…but what I do remember is telling Jackie over and over again just how much I loved him. At one point the doctor had asked if we wanted to hold him while he passed away…and my initial response was no, that we would all surround him bedside. One nurse took me off to the side and asked how I would like to pass away…in the arms of someone I love or in a bed surrounded by those I love. I don’t remember who she was but I cannot thank her enough for that comment. I stepped up and I told the doctor I would hold him…I am so thankful for her…she was an angel and she was so right! I held him the whole time. We watched as his breathes slowly became less frequent and we watched as his skin slowly changed color. It was at 1:25pm that Jackie’s fight ended. He was at peace…the doctor came in…grabbed my hand and said, “He is gone.” I shook my head in agreement.
We love you Jackie!
#ourjackofhearts