baby on the move!

cookie has started the rock and lunge. shes not quite crawling but shes almost there. she gets to where she wants to go now

my mom just ordered the foam play mat for the play room. couldnt have been a better time!

watch my little girl GO

http://www.youtube.com/watch?v=6okWG2btNSo

a day in the life

so i wanted to create a post called "a day in the life" so that everyone can see what cookie and us, as her care givers, have to go through every day.

we wake up at 8:30am (yes she sleeps in that late and yes i know I’m lucky :D) and she has 30 minutes of play time. at 9am she gets her creon (before every feed) served up on a spoon of baby food. it takes 3-4 spoons to give her all her creon. she gets her first dose of erythamycin and her oral antibiotics. she gets a 7oz bottle of formula. her formula is made so that it has a higher caloric density than typical bottles. instead of the typical 20 calories an oz, she gets 27 calories an oz. her bottle is a lot thicker than most.

every 4 days i have to wash her bottle/feed dishes and remake the next round. it takes about an hour. while i do this i wash, disinfect, boil, and dry her nebulizers.

then at 10am she gets her first round of solid foods . (i do not give her creon for this feed since they are still active from her 9am feed.) we give her 3oz of pureed penne pasta at aprox. 200 calories per oz. and 1oz of pureed apples and a spoon of butter. *sounds yummy huh? LOL*

at 11:30am she gets her first round of lung treatments. this too takes about an hour.

we give her 2 different drugs that are inhaled through a nebulizer. she starts of with albuterol then she received pulmozyme.

the albuterol helps to open up her airways so that the thick mucus in her lungs can be expelled easier. the second, pulmozyme, helps break down the mucus. immediately after her inhaled treatments, we give her CPT. this stands for Chest Physio Therapy. we use a small percussion cup to tap on her chest (front and back) to help vibrate the mucus from her lungs. when she gets old enough she will be able to wear what’s called a "vest".

it's a vest that you wear while inhaling your medications that vibrates your abdomen and loosens the mucus instead of doing it by hand.

she usually sleeps through most or all of her morning lung treatments. its nice for her to take her morning nap and its nice for us that she doesn’t mind getting her treatment. i imagine this could be a very big battle for some parents who have children that don’t like their therapy.

after her morning chest therapy ends around 12:30 then she gets another 30 minutes of play time to sharpen her developmental skills.

at 1pm she gets another round of creon and her second bottle of the day. another 7oz of high calorie formula.

when she finishes her bottle she goes down for her nap at around 1:30pm. she will usually sleep until around 4pm. this would be the time i clean and do chores :P

at 4pm she gets her once daily meds. this would include her ADEK vitamins and previcid. she is also on erythamicyn 3 times a day to help stomach motility (to prevent acid reflux) so she would be getting her second does now. its also time for her second round of solids. 2oz pureed penne pasta mixed with 2oz pureed sweet potatoes. we also add butter to this for extra calories.

after her solids, she gets about 30-45 minutes of play time until 5pm. at 5pm she gets her third bottle. like the rest, this is high calorie. 7oz at 27 calories an oz.

after her bottle i get time to make dinner in preparation for Christopher coming home from work. we usually sit down to eat around 7pm. cookie sits with us in her high chair at the table. she gets to munch on a shortbread cookie and drink juice. at 7:30 we give her creon again. she gets her third serving of solids. this serving is usually between 5-6oz of food. we mix 2oz of pureed bananas, 2oz pureed apples with 1-2oz of oatmeal.

at 8:30pm she gets her last lung treatment of the day. this treatment lasts about 30 minutes as it is only 1 inhaled med instead of 2. she done right around 9pm at which time she gets her last round of medication and another 7oz bottle. when she’s done, then its off to bed.

she is a very good sleeper, for that i am thankful. its quite a busy day with her and its nice to sleep through the night.

so a bit more history...

so anyways... where was i? oh yes..

once we got our baby girl home from the NICU we started to get used to life with a new baby in the house. we had lots of new doctor appointments and a ton of info to take in. we were started on a list of meds. lung treatments, vitamins, creon (enzymes) before every meal, etc etc.

at one of her cf clinic appointment's we learned that she had contracted MRSA at some point. not good for a CF'r.. its resistant to most antibiotics. it wasn’t a problem until the end of July. we went in for a routine apt. and got a chest x-ray and showed a lot of infection in her lungs. we were admitted to CHLA the next day for a 2 week stay. she was put under for a bronchoscopy & lavage then put out again 3 days later to place her PICC line. she would receive IV antibiotics every 8 hours for 2 weeks.

the hospital stay was very draining. while she had a roommate, only one of us could stay with her over night at a time. we had to sleep in a chair. no in room bathroom or shower. we had to use a communal shower that the patients all shared.

after her roommate left we got the room to ourselves and we were both able to stay in room with her day and night. once morning Christopher woke up sick (sore throat, cough etc) and the next day i woke with the same. CHLA contacted their infectious health manager and we were both sent home for a minimum 3 day stay to rule out swine flu. it was very hard to leave our baby girl for 3 days while we got well. the last thing we need is to pass this illness to her. so we stayed home. after we got better and were able to rule our swine flu, we returned.

we had some very amazing things happen while we were there. some very special women made our life a little brighter during our dark hour. we received a very large and delicious basket of get well cookies :D an adorable little elephant with a big bunch of balloons just for cookie.

we received a precious onsie for cookie and a few books to help pass the time. we were also very blessed to have the help from one woman that just.. I don’t have words for. she’s truly amazing.

in our time of need, she gave us the help to get our daughter a crib wedge to help relieve her painful and dangerous reflux.

she’s just so brave. she’s happy even through the worst of it. she has taught me a lot. she makes my world go round.

oh and she was released from CHLA on august 6th with a clean bill of health. we haven’t been back since!

new project

im working on a new project that im looking forward to posting here. still have a few more pictures to gather but it will be titled "A day in the life" and will detail cookies day and her struggles with CF. please keep an eye for it!

watch her grow!

just look at her! melts your heart. I might be biased ;) she has changed so much in 7 months and I’m looking forward to the next 7. every month we have with her is a month my world is whole. please help us keep her healthy and prolong her life. help us find a cure for CF.

we have an upcoming CF walk to help raise money towards research. please donate if and what you can. every bit goes to helping beautiful kids like my daughter cookie :D

http://www.cff.org/great_strides/MarshaHughes

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.

not really sure what im doing..

I’ve been thinking about setting up a blog for cookie so that everyone can follow her amazing life. She’s an amazing little girl that takes your breath away.. ironically that is just the reason why we’re here. my daughter, Gwendolynn may, has cystic fibrosis. she inherited a gene from both my husband and myself that caused her to be born with this disease, which has yet to be cured. every day is a struggle. every day is also a blessing. every day we get to spend with her is a day that I cherish.

the average age of a CF'r is climbing but still not high enough. in the 80's doctors were telling parents not to expect their child to make it to teen years. now they are projecting that the average age today is 42. that’s a huge step up in just 2 decades.

still, 42 is not nearly enough for a mother and farther to see their first born child off. we are of course praying for a cure.

I guess I will try and keep medical updates and everything here as we go along.

thanks for working with me as i figure all this "bloggy" stuff out :D