Little Miss Khaos was born on 12/29/11, she was 6 lbs 6 oz. and 17 3/4 in. She scored a 9 on her apgar test (only counted off for color), and was a very alert and healthy baby. She took to the breast perfect from the beginning, and was a very calm and quiet baby.
We went to her two week appointment and everything was looking great, she was growing, becoming more alert by the day. (they did a follow up newborn scenting) A few days after the appointment I received a phone call from the pediatricians office asking when was the soonest i could come back in because the doctor wanted to talk to me about her test results. I scheduled the next appointment for the next morning. We lived an hour away from the clinic so i had to have Philip drive me into my mom’s house so i would be able to make the appointment and he would still be able to go to work. (At this point we didn’t think it was going to be anything too serious) The nurse wouldn’t tell me what it was regarding on the phone.
The next morning I changed my appointment to the afternoon because I couldn’t get a ride to the morning one, (again not thinking it was going to be too serious) My mom and I went to the doctor at 4pm, they weighed and measured her and then we sat and waited for the doctor. I remember the moment when they told me that she had Cystic Fibrosis, my mind went blank. What was this disease, I had never heard of it before. I had no idea what to think, I took a deep breath and said ok, what exactly is that.
The doctor spent the next 30 minutes or so telling up what Cystic Fibrosis was, she told us NOT to google anything. She gave us information regarding the disease and help us set up an appointment at the Children’s Hospital to have a sweat test done. I am so thankful that my mom was there with me because I wasn’t able to think of any questions but she had a million questions for the doctor.
That night I called Philip and explained all that the doctor had told me and we decided we were just going to take day by day and see what the sweat test said. I held my baby girl that night and thought there is no way you have Cystic Fibrosis, you are so healthy. The blood test had to be wrong, the 1st newborn screening said you were borderline I bet you are just a carrier.
We got up bright and early the morning of the appointment, Philip, Mom, my youngest brother and I all went to get her sweat test done. She hated it!! The whole time she screamed bloody murder it broke my heart that we had to hold her there while the guy got her set up. She is a good sweat-er so she got plenty of sweat for the test after she was wrapped up.
When the test was finished we had to wait around the hospital for like 4 hours while they processed the results. Finally we were able to see the doctor and he confirmed that she did have Cystic Fibrosis. I felt like I wanted to cry! This wasn’t fair, I did everything right! For 9 months I ate 3 healthy meals a day and snacked healthy. I cut out caffeine and sugar, I took nightly walks! I took my prenatal vitamins, everything that I could do to make this the healthiest pregnancy ever I did! I even had a natural birth! After all of that she is sick, and it can’t be cured! There isn’t anything that I can do to make it better! Even now thinking back to that moment in time, I felt so helpless.
The doctors gave us more information then I knew what to do with, they sent us home with a prescription and instructions that seemed simple enough. In the beginning I felt so over whelmed, Little Miss and I were still getting our routine down and now we had to add all this medication into our system too. It was so much at first I never thought I would be able to get a handle on it all.
Before each feeding I have to break open a pill and feed the insides to her with applesauce, I have to give her salt every day then vitamins once a day. I know this doesn’t seem that bad, that is what I thought but as a first time mom I felt over whelmed as it was just with Little Miss now adding this I seriously thought there was no way I was ever going to get the hang of it. The first few days were so hard, I thought to myself I would take it slow add each stage slowly and eventually I would get all of the things down. So first we started out with the enzymes, each meal I would break open a pill feed it to her then let her eat. Eventually she got used to it, but sometimes she would be hungry now and she would have to wait until I got her medicine ready. Then she would get so upset that I would feel so bad that we had to take all these extra steps just to feed her!
The next week I introduced the vitamins, she didn’t want to sit still for this at all! I took my almost 2 months to figure out that it was best to give them to her after her enzymes during her last meal of the day. Now she takes them like a champ and loves the taste.
And the hardest thing for us was the salt!! Luckily for us it was in the winter when she was diagnosed so we only had to make sure she was given 1/4 tbsp every day. I started out slow because Little Miss HATED the salt with a fiery passion. She would scream so much that she wouldn’t eat. I had to fluctuate the dose and when to give it to her, it was so heart breaking. (it would have been easier if we bottle fed, but with breast feeding it was very difficult to say the least) Finally we now have a system, I touch my finger in apple sauce and touch it in the salt with each feeding. She still doesn’t like the taste but she has become more relaxed when I give it to her.
I know with each new addition to her medication or breathing needs we will be able to handle it with ease because we are strong and survivors. I don’t want Little Miss to ever feel like she isn’t able to do something because of her disease. She can live a full and prosperous live regardless of what she gets dealt.