were a bit of a haze- I was recovering from the c-section and drugged up, which made me loopy. The baby had glucose issues and so couldnt be in the room with us the first night and throughout the second day (Although when my legs were still numb and I couldn't get out of bed to see the baby the nurses snuck her into my room for a lil bit!). I was so excited when Annabelle finally got to stay in our room with us, I held her all night long.
It was a roller coaster ride. We went from not knowing if our baby would even live, to seeing her scream her lil head off. Then came the specialists after Annabelle had a head ultrasound-
The neonatologist said it was really bad and we were crushed,
The neurosurgery resident came by and told us most of the hydrocephalus kids do great, we shouldn't have to do any more imaging and we were thrilled
The neonatologist came by and said it was not just hydrocephalus because the ventricles were jagged something else happened and we should have an MRI and we were scared.
Annabelle had the sedated MRI across the bridge at our pediatric hospital. Turns out she had a massive inutero stroke. Most likely scenario is that she had a clot or other "ischemic event" that weakened her blood vessels and caused them to burst and bleed (equivalent to a grade IV intraventricular hemorrhage). The blood caused damage to the brain tissue so that "died off" and was replaced by the fluid. There was also the formation of a small piece of tissue, the result of the bleed, that did not allow the CSF to drain properly- adding to the hydrocephalus.
I was again devastated, I knew too much. Not only the information of what the studies had given us but what it all meant in the long run. I knew that I would never be able to pin someone down to give us a prognosis or what Annabelle's level of functioning would be, but I had also worked with many kids who suffered from hemorrhages and hydrocephalus- many of whom functioned at a very low level. A lot of the people around me never had the experience of working with those kids. A lot of people told me "the brain is wondrous, it can re coop" or "you never know she may end up 'ok'". In my mind, there was no way that was going to happen- I had seen the scans and there was just too much damage. Even though my parents had flown out to be there and my husband was going through the same thing, I felt very alone- I felt like I was the only one who really understood what was going on and what it all meant.
I cried... alot. Almost everyday for the first two months in fact. I was sad and mad and disappointed. Even though I had the most beautiful baby in the world in my arms it was not what I expected or had hoped for- which also made me feel like a terrible person and mom. I was sad for Annabelle, for all the things I did not think she would be able to experience or do or see. I was sad for our family and all the stress and time consuming therapies that I knew were coming. I was worried about my marriage, it's strong but would it survive this in the long run? I was sad for Jim- it was me that brought up having kids in the first place and this wasn't what he bargained for. All of which I think are totally valid thoughts and feelings.
I don't know what changed, and I still do get sad and mad and upset, I still have the occasional breakdown but they are becoming less and less. I suddenly had an over-whelming calm come over me- just a few days ago actually. While this entire situation absolutely sucks and I don't want to deal with it and I wish it had never happened I know we're going to be ok. I've known from the start that no matter what Annabelle is going to be well loved and cared for. Maybe that just finally sunk in. This is not going to be easy, and again it totally sucks, but I am one hell of a lucky mom to have her.
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