Love Doesn't Count Chromosomes
My last post was made on June 19th, around 11:15am. Shortly after that, Milo started to have more and more difficultly with remaining stable. The NICU team was able to stabilize him each time, but he was needing more and more support. I keep replaying our nurse coming in, and saying we needed to get upstairs and seeing the crash cart outside his room. At this point we had two of the neonatologists in our room, Milo's nurse, respiratory therapist, and more in his room. The neonatologists explained that Milo's body was more complex that we initially believed. He had many "midline" defects that we didn't know of until his systems started working on his own. From the beginning, Josh and I agreed that Milo would let us know what he needed and we would do just that. Seeing these complexities was his way of telling us he was just too pure for this world.
We went back downstairs and started making plans to get Ryleigh and Oliver up to the hospital, along with our photographer Chelsea, to hopefully make memories with Milo. Josh and I went back upstairs and got to hold our boy for the first time while we waited for our other babies. With our other two, I had the opportunity to hold them first, but this time around, Josh absolutely deserved the opportunity to hold our sweet boy.
Prior to Ryleigh and Oliver coming in to Milo's room, we removed the tubes and wires, so they could see their brother up close. We got to see our sweet boy just as he was. His chubby cheeks, his blonde hair, his wrinkled ears, every perfect little piece of him. Then Ryleigh came into the room and met her baby brother for the first time around 3:30pm.
Ryleigh is a deeply feeling little lady. Initially, when she came into the room, you could see the hesitation, but then she joined us on the couch and sat looking to us to see how she should respond in the situation. Josh did such an amazing job keeping his composure throughout this, and I certainly tried my best.
Then we had them send Oliver in. The neonatologist who was with us through the end shared that this next moment was one of those moments that sticks with you throughout your career... The door opened to Milo's room, and there were many people: doctors, nurses, RT, a photographer, and we were on the far side of the room on the couch. Oliver looked around the room, saw the many strangers, but then saw me, and ran straight to me. As the doctor retold this moment, he shared that it was so apparent that Oliver knew I needed him, and he needed to be with his Momma. Chelsea managed to capture this moment of me with my boys, and it's truly one of the most beautifully heartbreaking moments I've seen captured.
We spent the next half hour as a family. We talked to Milo, the kids took turns holding him. Oliver and Ryleigh kept wanting more turns. They truly were so in love with their brother, and saw him as perfect as he was, regardless of the differences caused by his extra chromosome.
Milo shared his octopuses with his siblings that they could keep to remember him by. These moments with all my babies together are something I will forever be grateful for.
These past three days, have been the hardest days of our lives. Josh and I have both experienced close losses before, but there is NO amount of preparation, even with knowing Milo's diagnosis, that could have helped us through this. Thursday night, we stayed in my hospital room going between talking and crying. We had more opportunities to hold Milo and spend time with him as well. That night, the mom-guilt started to hit me. Due to my hemorrhage, it was nearly 10 hours before I could get up to the NICU to see Milo. To get up to him, it took two nurses, and Josh while I had to use a wheelchair, take an IV pole, many tubes and wires, and a portable suction machine. It wasn't an easy task to get up there, and the rooms were hot so we had to keep my visits short. What really hurts me is realizing in his time alive, I didn't get to spend nearly as much time as I wanted to, and my heart is still breaking from that.
Friday morning, my labs still weren't looking great, so they had me do an iron infusion to help with my hemoglobin. This also gave us a chance for Sarah Jean (our doula) to come meet Milo, and for us to hold him and say goodbye.
Walking out of the labor and delivery unit without a baby is absolutely devastating. We had the most amazing nurses, who were giving the biggest hugs as we walked out with empty arms and broken hearts. We got in the car and made our way home to get our other babies from daycare.
We picked the kids up, and as we pulled up towards the house, Ryleigh asked where Milo was and if he was coming home. We had explained that he had died before she left him at the hospital on Thursday, but we figured it wouldn't click until we were all at home and Milo wasn't. She then started bawling about how she wanted to ride her bike, and how she wanted to watch a movie, which indicated to us that she was trying to process all of that in a way that she knew how.
We spent the night as a family watching movies and laying low, but the tears still kept coming on and off.
This morning, I could tell that my hormones are changing and everything is starting to hit me. For example, I went to grab a robe, and it was one I packed for skin-to-skin time and my heart broke. I look around and see the different mementos, or the hospital bracelets, and my heart sinks. I cried over the idea of taking a shower, because it was the first one since I last held him. Grief makes absolutely no sense, but I'm grateful for Josh and our bigger support system.
In terms of my health, I ended up back in the ER this afternoon. I was having difficulty breathing, a headache, and tachycardia. They ruled out a pulmonary embolism but found that my hemoglobin was still low, so we did move forward with a blood transfusion. As of now I seem to be feeling better, so I'm hoping this will help my body regulate and move forward. I will also be meeting with my doctor this week to review everything and see if there's any anxiety medication that may help me continue to work through this.
Monday, Josh and I will be meeting with the funeral home to plan a final goodbye for our boy. This is definitely not something I had planned for 2025 (or really, ever in my lifetime as a mom).
We are so grateful for each and every one of you. We are reading every comment, every message, and even if we don't respond, please know we are seeing it and feel the love from you. Thank you for the meals, for the help with the kids, and so much more. We've got a long road ahead of us, but your support makes the load more bearable.
Photo Credit: Chelsea May Photography--THANK YOU Chelsea, for capturing these moments that we will treasure for our lifetime.
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