My husband and I just returned from a week trip. We needed a break from all we have been through. Turns out a "vacation" doesn't make it all disappear. Not that I thought it would. But one can hope. It did, however, give us time together to reconnect and I was able to reflect on the events we have just been through. But glad to be home and ready to share more of our story.
My last post I told you that I would talk more about Boone's Hydrocephalus and the day he passed away. So here it goes! By the 3rd week in the NICU we were pretty much settled in and had a routine. Ryan and I would come in every morning together and get the report from the doctor. Ryan would go to work and I would do my thing at the hospital: pumping, talking to the nurses, doing Boone's cares, and seeing our visitors.
At Boone's third head ultrasound he was officially diagnosed with Hydrocephalus. Another very scary day. Of course when you google what this is terrible images show up and brain damage is the worst case scenario. All of these things start running through your head of what this will do to your baby. One doctor told me the first week we were in the hospital is that the NICU is a series of grief. First, you mourn the loss of the idea of a perfect pregancy. You are no longer pregnant and you have a premature baby. So you accept that premature baby. Then, for example, you find out your baby has a brain bleed. So you mourn the loss of the baby without the brain bleed and you accept your new baby. And then you mourn the loss the baby with just the brain bleed. Now you have a baby with hydrocephalus too. And so on and so fourth. Its a continuous cycle of loss and acceptance.
So The doctors ordered an MRI for the next day. Boone's head circumferences were measuring very consistent so they doctors did not feel this was anything urgent. One of our favorite nurses, Sarah, had mapped out a plan for the next nurse on Tuesday. She was most worried about keeping Boone warm during the MRI since they had to transport him to another area of the hospital. It came time for his MRI and it got postponed due to other emergency patients coming in. So I anxiously waited for Wednesday morning.
The doctors couldn't tell me when exactly they would do the MRI because emergency and trauma patients would take precedence over hime. They ended up taking him in around 7am on Wednesday. Thankfully my dad was there at his usual time and was there to see him off. The nurses used warm blankets and put clothes on him for the first time. He was drowning in the clothes. My dad text me a picture that said "Boone has his big boy clothes on today!"It was the first time I had seen him dressed. Sadly, I would never be able to put on any of the outfits I bought for him. (see photo)
The MRI results confirmed that he did have hydrocephalus. The doctors thought that maybe some of the fluid was finding its own way out and so it was a wait and see thing. We would continue with weekly head ultrasounds and regular head measurements. If there were no changes to his head circumference and future ultrasounds showed no change we would leave it and possibly tap his head to relieve any extra fluid. Again, there was no way to tell if he would just need tapped once or twice or have a permanent shunt put in.
The unknown is the most unnerving thing about the NICU. You just want answers for your child and most of the time the answer is " we will wait and see" The nurses were always so encouraging telling me that babies are so resilient and they see these babies leave with minimal long term disabilities. But there is still no way to know. You just want a guarantee that your baby is going to live a healthy life and grow up to be big and strong. In our case we won't get to see our son grow up.
I thought the biggest thing Boone had to overcome was the Hydrocephalus. The thought NEVER crossed my mind that I would leave the hospital without my child. It was always a matter of what kind of life would he have once we got home. What would he be like? I was wrapping my brain around having a child with some disabilities due to prematurity. There was nothing that he couldn't overcome once he had gained some weight and grew. That's what I thought anyways.
That unknowing in the NICU is so hard. It like a very bumpy roller-coaster ride. Many hugs to you!
Thank you for sharing more of Boone's story. I think it is really sweet that you had regular visitors to see him and be able to give you some of those updates. While it did not feel like a true vacation, I am glad that you were able to have some time with your husband. Just sharing space together, those unspoken words, understood glances, and the tears can all help couples feel connected during this painful journey.
Hi again. Thank you for sharing your precious baby boy's life with us. I hope that telling his story is helping you in your journey. I hope that your vacation with your husband was a small respite from the day to day.
Love and Hugs
"a series of grief".... that line really resonates with me. It's so incredibly true. And for many families that grief continues.... in many forms. Thank you for being so open about Boone's story and your journey.
And I'm really happy that you and your husband had some time away. While you both grieve Boone, no matter the place at least you had time to focus on one another and ignore the rest of the world for awhile.
Hugs and love,
Thank you for sharing more of his story with us. Everything you wrote I can relate too. I remember too being in the NICU and just focusing on when my son would come home and what it would be like. I was making plans in my head never once allowing myself to think what if he doesn't come home. I had to hang on to that hope because it's all I had left. We too also took a few days and got away after son passed. Nicki
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