Updated: Nov 13, 2019
Warning: This blog post will be about the death of my 7 week old son. There will be details that are sensitive.
My sweet baby boy Oliver took his last breathe with us on July 25th 2019
Oliver had a constant battle going on. He was born and immediately had to be strong and fight hard to stay afloat. We all did. No matter how tough it was, all 6 weeks and 6 days with him were the best of my life. Our family strength was tested with Ollie. We knew we had to be the strongest we could be and love him as much as we could.
I want to explain what happened with him to result with his passing away. I know this is a sensitive topic and can be hard to read for anyone who has lost a child. I'll be sharing images as well as what was around me during that time. If you aren't comfortable with that image, please don't read this post. I will allow you to ask me all the questions you need to, but for anyones mental state, don't compromise that for the curiosity.
We grew concerned about Ollie over the last day and decided to make an emergency appointment with his pediatrician.
A few days before the visit, we switched his milk bottles to mostly formula due to my milk production decreasing drastically from what I can assume would be stress. We thought that maybe he was lactose and tolerant and was having really bad blockage. He hadn't pooped either and for a child with Hirschsprungs and a corrective surgery, that's wasn't a good thing.
We got to her office and she immediately started taking vitals and number and had two nurses and herself in the room. She told us she wanted to go back to Scottish Rite because he didn't look good and he needed more support than she could give him. She said we had to ride by ambulance.
So she called and we could hear the sirens coming to us, Ryan and I looked at each other and just had such a panic blank stare. He made the arrangements to drop Piper off at his parents and I rode in the ambulance with Ollie.
Not only was I terrified, but I was hurting. I wasn't prepared to loose my son or even think about it. Not yet and not so close to when I lost my father (11-25-16). Just almost three years shy of losing the most important person of my life.
We get to Scottish Rite and we are in a huge room, with tons of people, with my tiny little baby boy in this gigantic bed.
They had everyone from every angle in that room; respiratory, cardiology, general surgery, you know it. The hospital provides support for you in this situation. The Chaplen or Social Services will introduce themselves and be there for you to leeway information from the doctor if you forget, support you, and just be there when you need them. And until Ryan showed up, I didn't have anyone.
The doctor said that there was clearly something wrong and that they had to figure it out. They admit us up to the PICU (Pediatric Intensive Care Unit).
His color looked better, as he had low blood sugar, low sodium and potassium, and just hadn't eaten much in the last couple days. I was beginning to get hopeful when his colored changed back to normal. His lis were so pink and his skin was so soft and warm and he was moving and just resting as much as he could.
His belly was distended (puffy) and was hard. There was clearly a reason that he couldn't pass gas or poop and his stomach was just filling with air and gas. For the time being, he could breathe on his own but that wasn't going to last very long if his belly expanded, diaphragm move higher up into the lungs making it hard for him to breathe.
To combat that, they were pushing more air into his lungs to get his lungs to shift down and battle the expanding belly and diaphragm.
At this point, he had an MRI, an X-ray, A Canula for air, several blood draws, and a catheter added once and taken out just for a urine sample. My baby was going through it, the thickest. It was so hard to be back in this position. Back in the hospital unsure of what's wrong with my son and unable to fix it. I remembered thinking "not even a full month home. I can't help but be afraid that this is what it's going to be like for him when he is sick" and I still believe that. I was right, the dr told me that Down Syndrome babies live on the edge of a table. One minute they can be totally fine but they can start to have a downfall, and that can escalate very quickly.
After an okay night and a sight come back, I went home to relax and sleep while I could because we clearly will all need it in the next coming days. I went home to my semi normal life with my daughter and just spent time as a family and did our family night time routine.
I got to Ollie a little after noon. Traffic going to the hospital is just awful and I honestly can't remember if I dropped Piper off of what, but she was with my mother in law. I got there and noticed that he had developed what is called Petechiae. Thats when the capillaries under the skin don't have the change to clot before reaching the skin so essentially its tiny bleeding out. Because his blood platelets were low, his blood couldn't clot therefore causing it. They also placed whats called a PICC line. A PICC line is a catheter in the vein of his arm for better access and not having constant blood draws. I had to leave the room for them to do it and I just hated them for it. Clearly, I can handle seeing anything at this point and I didn't want to leave his side with the condition he was in. But nonetheless, I went to the waiting room.
While I was in the waiting room, I got a call from my mother in law. She told me that Piper had run out of the door to the play room at Chick Fil A and smacked her forehead on the table and she had a huge gash on her forehead.
All I could think of was "oh my god..both of my children..what is going on?"
So now she was on the way to get her stitches done. All the while, Ryan was at work. So he left work to go be with her so she had one of us there for her comfort and I was with Ollie.
Ollies doctors told us that they were truly worried for him. And that could only have meant that they had already talked about it and were assuming he wouldn't make it. It crushed my soul. My stress and anxiety, my fears and heartbreak were just skyrocketing.
Despite what was going on, I was really trying to remain positive for him. He was my son, my strong boy. I needed him to survive this. I needed him desperately.
At this point, he was really pale and really cold. He wasn't getting enough blood circulated around to make him warm enough. My poor boy is naked so of course he is extra cold on top of that. so he has a blanket on his head and one his body all the way up to his chin. I could just see his tiny face. His face before it got so swollen he looked like a different baby.
He had several blood transfusions and nothing was working, his numbers weren't improving. He was slowly declining and I could see it. I was enduring so much heartache that I thought that I wasn't going to survive him leaving us.
They had to intubate him to combat the gas and air building up in his stomach (which was making his bloated and a hard to touch stomach). Intubation wasn't because of him not breathing on his own, but to try to smush down the Diaphragm and the Stomach that was building with air.
At this point, his surgeon told me that we were stuck between a rock and a hard place. That he wouldn't survive surgery to figure out what the obstruction was, but she was certain he had it. The gas was trapped in a place that they couldn't reach. She told me he wouldn't make the surgery.
I was in the state of unreal and harsh truth. I couldn't believe what I was hearing and witnessing and having to do. I was alone figuring this out and it was like I wasn't even in my own mind anymore.
Nonetheless, his condition was getting worse and they quickly ushered me out of the room to do surgery right then and there. He wouldn't survive the transfer up to the OR so his PICU room was now his OR room. So many surgeons, doctors, nurses, therapist were there. It was yet again the craziest scene I've ever seen. I heard Dr. Banks yell "mom you need to get out of here" so a nurse had my go to the waiting room yet again. That was 5:18pm..
5:46 pm - The nurse comes to me and tells me things have gone badly after intubating him, and that they are doing chest compressions on my son and that I needed to come be by his side. My heart fucking sank. We ran down the hallway, around two corners, and finally got to his room. I could barely see him amongst everyone on him. But what I did see, was his surgeon and two doctors tag team CPR. I just watched as my little sons body was bouncing on the crib mattress. I just kept saying "please please please please please" over and over until they finally said that they had a rhythm.
After Twenty minutes.
Then they started the surgery. The surgery he wouldn't survive.
He made it through surgery, but they couldn't close him up. He had a long incision across his stomach horizontally and there would be a sponge the same size, that was practically vacuum sealed attacked to suction. His surgeon and Dr said that it would be tough to even make it through the night. But if he did, that they would look at 24-48 hours until they went back to surgery to close him up. Because at that time, he had a part of his colon stapled and his bowl stapled closed. They said that they noticed some scar tissue on the inside of the colon from where he had the Pull Through Surgery to correct the Hirschsprungs. The scar tissue created a blockage in his small bowels, essentially aiding in a small portion of the colon to die. His surgeon looked at me and said that regardless of all he was dealing with, that she was worried about his brain. He was gone for 20 minutes before they go this heart rhythm back. That means there could be a lot of damage and that he wouldn't be the same baby to us.
9:16 pm- They try to put an Arterial Line to monitor his blood pressure minute by minute. The Pulsox wasn't picking up his blood pressure as well because the circulation was so poor to his arms and legs that it was making it cold. They tried and tried and yet again I was taken to the waiting room. The night Dr came in and kept telling me that we would have to make a choice, he wasn't doing well, and that he wanted me to be with my boy because he was't well. I had to stop pumping and rush off to be with him, mid stream. All while this is happening, I'm having to make sure I'm pumping so I don't have pain and in the off chance he did survive, that I had milk for him.
I get back to the room and his skin is so pink from the heat lamp and he is super puffy. The doctors did say he was going to get puffy from all the blood products and medications he was getting. At the time of chest compressions, they had to give him the maximum drugs to revive him. And he was continuously having those administered at a maximum amount.
I spent 12 hours awake so far with barely any food or water and I was so exhausted but there was no way I was leaving his side or sleeping. No way in hell I could. The night doctor said that it was going to take a miracle for him to make it through the night. So minute by minute, and second by second I was going to be there.
It was around 12:30 am that I was able to hold him. It took four or five people to transfer him to me in the chair because of all the cords and machines he was attached to. But finally, I was able to hold him.
Each machine was administering some sort of medication to keep his heart pumping and going and helping his blood pressure and not picture is his intubation machine. I could barely snuggle him but at this point, I was taking every second I could have with him. I held him for two hours. I didn't move. I had to pee and my legs were numb but I wasn't letting him go. I just stroked his mohawk, the nurse took our photo, and I was taking photos of anything I could; his mohawk, his toes, his ears, all of it.
Ryan was home with Piper sleeping and taking care of Piper. Poor girl had it rough and it was scary but she made it out of getting stitches just fine.
I put him in bed around 3 or so so I could go walk some and get out of the room for a second. The doctors and nurses said that that was my job when I was spending so much time there. I hated it but I did it. I went to the bathroom, I drank some Powerade and I went right back to his side moments later.
I was capturing every moment I can because I knew that these photos would be the last I had of him.
I remember watching the sky turn from dark blue to light blue to the sun shining. I was relieved. I thought to myself "we made it through the night. This impossible to achieve miracle has happened and we made it through the night" despite his blood pressure dropping into the 23/18 area.
I had called Ryan around 4 am to let him know that it wasn't going to be good and that we were going to have to make the decision. The impossible decision to let our son go on our terms. We both agreed to wait until his Doctor and Surgeons returned to their shifts and get their advise as well.. but it wasn't as we had hoped.
They said that this event will keep him in the hospital if anything, was 6 months to maybe a year. That his was so catastrophic for him, that recovering would take a really long time. And that recovery wouldn't be the same as normal babies one. because of his Down syndrome and two. being without proper heart beat and air for 20 minutes leads to pretty intense deficets. They told us if he did survive, being that the percentage was only 1%, that he would have issues possibly eating, waking, talking, drinking, you name it. They were sure he would have a colostomy bag because of how his bowls were, that his liver looks to had damage and that soon his kidneys would likely fail. They were worried that the constant blood products weren't helping his numbers improve at all, and that his quality of life wasn't going to be good.
We were shattered apart. Broken into a million pieces. We had to make the choice of letting them continue to do medications and if he went into cardiac arrest again, they would push whatever medications they could and keep going. But the issue there is that the medications were at an all time max already and they wouldn't be able to push any medications so if his heart stopped again, there was the potential of him not coming back. Or the other option was to let him pass in our arms, unhooked from machines and medications other than pain medication.
As you can imagine, making this decision was so hard. Making the decision to euthanize your pet it hard let alone a human being that you created and gave birth too.
Ryan and I had decided that we wanted them to pass on in our arms. Ryan was going to hold him first for however long he wanted, then I was going to hold him as he passed on.
The nurse came in to do momentous for us. They were 3D molds of his hand and foot, as well as several hand and foot prints.
I took photos of his feet once more. His feet were my favorite, and here they were, glowing.
After they were done with those, they passed him to Ryan so he could hold him. Again, it took a small village to do it but everyone knew that their few minutes of work was going to mean that we could hold out son for the last few hours.
Around 10:30 am Ryan got to hold him. And he held him for a while before he had to use the bathroom and take the carseat to the car.
I was given him around 11:30 am. I was holding in every moment I could with him. I took photos of everything. I couldn't believe that we were here. So I took this time to talk to Ollie and just tell him that it was going to be okay. That he wasn't going to be in pain and that he was going to see my dad, his grandpa. I told him that he was going to be taking care of him for now on and that he was going to take such good care of him.
Here we are, the last details of my boy,. From the flays of his hair in a mohawk down to the straight line in his hand. I'll never forget how small he was in my hands but he fit there perfectly. His head the same size as my palm, his toe as long as my thumb, and his hand as big as our thumbs.
Around 12:15pm, we asked her to start the process of unhooking him. It took a while, but once they were all ready to do it, they were going to unhook all at once. They counted to three and unhooked and within seconds I scooped him up and held him on my chest and put my face on his head kissing him and Ryan was next to me holding us and him.I had her check him and he still had a heart beat so we just kept him there.
I remember crying into his hair and it was making it wet, ruining his mohawk. I remember him feeling heavy and stiff, and I had her check again. She had us lay him down and she checked his heart. She then opened his diaper and checked his femoral artery. She said the words "his hear has stopped" and that was it.. we had lost our son.
The chaplain walked us to the elevators. I was numb, and empty, and distant. I felt like I wasn't even in my own body anymore. We passed moms with babies and moms with carseats and I started to loose it. We got to the elevators and we got on and went to our floor. I got to my car and I finally vocally broke down in Ryans arms. This was the last time we were leaving this hospital, without our son and it won't ever happen again.
A good friend of ours called us while we were saying goodbye, so I called him back and he asked if everything was okay and I broke the news. I then called my mom, my sister, and my two best friends. It was so hard to relive the story every time but they all knew what was going on and I couldn't not tell them.
My best friend offered to come to the house and help do what we would need in any way so she came and put away the baby stuff and our in laws were here with Piper. We would be coming home to a life we thought we would never have again, just us three.
Adjusting to the life we had before I was pregnant feels foreign. It feels wrong. It feels like we are just picking up where we left of and my entire pregnancy never existed. Thankfully, Piper didn't fully understand her role as a big sister so explaining to her was something we didn't have to do. But it was hard even being in the shadow of what was there.
We had a fundraiser and a meal train going on for a few weeks now and we are so blown away from all the love an support we have received. Im going to continue to blog about my grief, raising my daughter, and continuing our lives as we once all were before.