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surgery April 28, 2017

Filed under: Uncategorized — springtwist @ 7:00 pm

Im writing this on april 26th, but the internet is not great so i can’t risk posting it and having the internet eat it just yet.


My girl has stitches from ribcage to belly button, in a crescent moon shape. She spent almost her first two years of life without this moon-scar. I took some photos of her the day before surgery so i have some documentation of what her body looked like before it was cut open. The rest of her life she will have her scar. It shows where a surgeon took out her adrenal gland, and another surgeon took out her right ovary. I joked with the surgeon that she will be a little lighter on one side now, and he chuckled and said that she will need to carry all her pocket change on the other side to balance it out. Right now the incision and stitches are covered up by paper medical tape, but it’s translucent and underneath is black dried blood. I am so thankful that they only had to make one incision, they were pretty sure that they would need to make two.


Im tired and a bit mixed up today. Got upset for basically no reason, but reigned it in. i think its lack of sleep and shoddy med-taking skills coupled with living in a hospital. My bed for the past 5 nights has been three chairs pushed together in a row with a hospital blanket and a plastic pillow. That’s okay for a night or two, but not much longer. now my body is sore all over. I woke up many times a night to rearrange but nothing was comfortable. I am not taking my pills on my regular schedule right now because i don’t have a regular schedule. We will get to go home soon, which is what is tiding me over. I miss jim.


People keep saying how amazing i am, how amazing she is. I don’t think so. I am just doing what a mom needs to do. I see other moms around me doing the same all the time.


The other babies in the observation room with me were nice company. The girl next to me is baby M. she was mostly quiet and calm. The boy across from us is baby J and he got upset at the slightest thing. Those two couldnt have been older than four weeks – they were so tiny. The other babies i never got a good look at, but they all had their newborn baby cries still so they were all about the same age. Little girl M had some sort of gastro surgery. At least one baby was there for cardiac surgery. Little boy J had something funky going on with his throat i think, though his issues seemed complicated. Js parents never stay that long, and his mom always cries a little bit when she has to leave him. I don’t know what their life story is or why they cant stay, but its so sad.  
When the parents werent around there were volunteers to come and snuggle the babies. They are so little they dont really care yet who holds them as long as its a nice warm human body. Yesterday evening a big burly guy came up, a volunteer, and i think he was sent in to ask if they needed any help with anything. My nurse said “yes! You can hold M” and he looked in shock. Nurse basically had to hold his hand and got him all set up with baby M and he sat there super awkwardly and wasnt sure what to do. I kept glancing over at him and watched as he gradually relaxed. M stared at him and he settled down with her, stroked her hair and never took his eyes off her little face. I thought he was reading or watching something on his phone but he was just contently taking her all in. he stayed there with her in his arms for a couple hours. She will never remember it, but he will. I can’t imagine leaving your tiny baby behind in the hospital and not being able to stay.

Its pretty late as well, and im sure my own rhythms are truly fucked up because theres just so much artificial light in a hospital. Next to thalias crib was the supply closet so every time somebody went in to get something the light would flood into my corner. In the observation room, theres the constant beeping of all the other monitors. Theres always some baby who is fussing. Baby J cried at the slightest thing so he was crying the most. I want to go back to my own bed.


she might die April 18, 2017

Filed under: Uncategorized — springtwist @ 11:09 am






im clinging to my anatomy studying. im pouring all my stress and anxiety onto my exam, though i dont need to. ive shifted the focus from her surgery to my exam for the moment. sondra asked how im doing, i said “im… holding together out of willpower”

about 70% of kids survive treatment. about 80% of those who survive treatment are still alive in 5 years.

i cant think about it. i need to turn back to studying.