Saturday, October 10, 2009

the begining

so i guess i should start from the beginning for all of you that are new here or maybe for some who never knew or might have forget..

Christopher (my husband) and I (Elisa) were very pleased to see the pregnancy test show up positive. our precious baby was growing. the pregnancy was breezy for the most part. nothing too scary. 8 months into the pregnancy I started pre term labor. I was admitted to L&D at the hospital 8 times before cookie arrived. i was on full bed rest and meds to stop the contractions... once I was 37 weeks and deemed full term I went off the meds and bed rest so that nature could take its course.. and figures, at that time she didn’t want to come out :D

we waited and waited with tough and painful contractions and she still wasn’t coming. at 39 weeks the dr scheduled an induction. "come in to L&D at 6am on Friday morning and we will induce"... Thursday night i packed my bags and took a shower. 10 minutes after the shower my water broke. the water was greenish yellow which i read could happen is the baby was meconium stained (baby pooped in utero) so we get to the hospital just hours before I was supposed to go in for my induction. funny things work out that way huh?

so the contractions are coming now. painful. I’m screaming and I’m the only one in the ward and the 3 nurses on staff keep telling me" you’re not dilated enough for an epidural. you will just have to wait" well come 1am these nurses are so tired of me screaming in pain that they call the doctor and order the epidural just to shut me up. I’m sure that wasn’t my strongest moment. i get the epidural and i fall asleep just a few minutes after getting it. slept till 6am when the doctor comes in and informs me that we will be doing an "emergent" c-section. it’s not an emergency but if i were to labor any further the baby could distress and cause an emergency. because the baby was meconium stained and her heart rate was dipping with each contraction (usually due to the cord wrapped around the neck) it was causing the doctor to worry.

i was prepped and wheeled into the OR. at 8:07am February, 27th, 2009 our baby girl Gwendolynn May was born. she was green and covered in meconium. they took her into the NICU for an 8 hour stay to make sure that she was not harmed by the meconium. I finally got to hold my baby girl that night at around 6pm. she was perfect. everything i could have dreamed of.

the first night went grand. the second and the third. all was well in our eyes. she ate and slept and cooed and we were overjoyed.

the doctor came in and said "we notice she hasn’t been pooping as often as she should be.." so i thought nothing of it. ok, so maybe she’s constipated? the doctor wanted to do an enema and see if it helps... 1 try.. nothing.. 2nd, same. third... they finally decide that this is a growing urgent concern. we were transferred to los Robles NICU for a barium enema (enema with radioactive material that they can watch with an x-ray) and we get there and Christopher and i have to leave her. it was hard. harder than anything I’ve had to do. leave my baby.

we expected them to have her back to health in a couple days... they start to feed her, she doesn’t poop, so they stop the feeding. my poor baby girl was 4 days old and not allowed to eat anything. they put a tube into her tummy with a cup on the end to suck out all her stomach juice so she doesn’t get more backed up. her stomach was hard and distended. it hurt her to have a shirt on. they told us it could be 1 of 3 things:

1. meconium plug syndrome (best case)- just really super constipated. meconium is thick like tar and could get stuck for whatever reason

2. herschprungs disease (second best case)- a disease that causes the colon not to work and would have to be removed with a "pull through" surgery later in life to connect the 2 ends while having a colostomy in the mean time.

3. cystic fibrosis (worst case)- a disease of the mucus that causes lung disease and poor weight gain.

after 2 weeks in the NICU with no real progress they decide that the enemas were not going to work and that they would need to remove her bowel obstruction surgically.

[ i just want to say that I’m sorry if this is not the emotional read you might have expected it to be, although it was a very emotional time for my husband and i its quite hard to relive in my mind so I’m trying to keep things as clinical as i can to avoid breaking down in tears ]

we went home. did some research and looked at our options. CF was by far the worst. life threatening diseases are never good. one of the old ways to test for CF was to kiss/lick your baby’s forehead (since most cf kids are extra salty) so I went to my daughter, picked her up and kissed her.

she was saltier than a potato chip. i broke down. i knew in my heart what the blood tests had yet to confirm. she was still in immediate danger though, we had to get the block out.

so.. 2 weeks into our daughters life, they wheel her into the OR for abdominal surgery. after a couple hours of waiting the doctors finally come back out and talk with us.. I’m looking for answers. she doing well and they pulled a solid 2 foot mass from her lower intestine. i asked if it was CF and the doctor told me "I’ve never removed a block like that from someone without CF." my head was spinning.

while she was waiting in the NICU recovering, we got the DNA results. it was CF. we had given our precious baby girl this disease that she will struggle with her entire life, a life that no one can forecast a length for.

in recovery they start to allow her to feed again (she had gone nearly 6 days total without food) and she is happy. she is the happiest starved baby I’ve ever seen. they tell me that I must breast feed to give her my immunities. my milk came and went since it has been 3 weeks post-pregnancy, at this point.

i get a hospital pump and was able to bring it back to some degree. it was enough for her at the start. she had a G-tube placed that they just pushed the fluids in and went straight to her tummy. she didn’t eat very well. they would try to get her to "nipple' as they call it (drink from the bottle/breast) and she would but not for long. they would tube feed her the rest.

with 3 days left before we could be discharged, they moved us into a pediatric room so that Christopher and i could stay with her night and day instead of driving home and coming back twice a day like we did. it was nice to hold her at night. wake up and feed her. things like that people took for granted. they would not let her leave until one of us knew how to place her NG-tube. I had to learn on my baby girl. I felt horrible. I had to pull her current tube, get a new one, measure it out and then cram this tube as fast as I could up her nose and down the back of her throat into her stomach as she screams and gags. once was not enough. I had to PROVE I knew how. I had to do it several more times before they let us leave. I felt like the worst parent doing that to my baby.

Monday we were discharged. the 23rd of march. almost spent the first full month of her life in a hospital.

we drove her home so quick hoping they wouldn’t change their minds and make us bring her back. it was weird having her home. not used to it I guess. we were on strict orders to feed every 3 hours. she still had her NG-tube. she would eat fine for us and after 1 day I pulled the tube out (I was supposed to let her pediatrician do it days later) she was more than excited after that. she still had some eating trouble. we had to bounce her in our arms to get her to drink anything at all, but she would eat it all.

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