Sunday, September 13, 2015

CF story

CF story:
When Jace was born I had no idea what I was getting into. Being a mother for me was really hard. I felt like a very bad mom for a very long time. It's hard not knowing what is wrong with your child, or what they need. When Jace was born he was constantly eating. Like every hour to an hour and a half he got hungry. But really he would eat at like 4 for 20 minutes then get hungry again at 5 or 530 then eat again for another 20-30 minutes. I watched a lot of Netflix during this time!
I read all the books that say put your child on a schedule, but he was hungry and would nurse for a good amount of time. I just kept nursing him, but I wasn't sleeping. I was so overwhelmed after 4 weeks of this I was at a lost. I remember going into Target one night to buy diapers (size Newborn because we ran out, because I thought he wouldn't be in them for a very long time). The lady at the cash register asked "is this for your baby" and I said "yes, he's 3 weeks old". She then looked at me and said "How are you doing sweetie?" I looked at her and said with tears in my eyes "Not good".  She said "Don't worry it get's better." Then I ran to my car and started to ball. It was so hard for me those first few weeks because Jace wasn't sleeping, and I couldn't ever leave for longer then an hour because he was nursing like crazy. Not to mention I was still in school full time taking 15 credits! Ya that was a crazy few weeks!! 
I mention the diapers because Jace was born 7lbs 7oz. Before we left the hospital he was down to 6 lbs 8 or 9 oz. I asked the doctor and he said that they don't worry about it unless it's a pound or more. I looked at him and was like it's almost a pound. Then he thought about it and said we'll keep an eye on it but I'm sure he's fine. When I went in for his first visit I told the doctor he was eating all the time and he said that some babies need to eat more than others. Then they weighed him and he was back up to 7 lbs 5 oz. So they said that was great because he was gaining his weight back. I was still worried because I knew how much I was feeding him. I said my concerns again, but the doctor said it was fine. Then after 4 weeks I got a call from him saying he may have cystic fibrosis and further testing needed to be done. I got off the phone with him and cried for a very long time. I didn't know what Cystic Fibrosis meant, but I knew it was bad. When Jace was in utero CF came up because he had bowel blockage, but it got quickly taking off the table because Jared and I don't have it in either of our families. I told my family that CF was one of the things discussed and all people knew about it was that it was bad. So that's all I knew about it. That night I researched CF all night. Literally. The next week we went in on a wednesday to the hospital to get the testing. By this time I knew Jace had CF. I just knew this was what he had. I knew it and was at peace with it. We got the HORRIBLE sweat test done and then as we were driving home we stopped for dinner at Chipotle and we got the call. Jace's doctor called us saying the test was positive and we needed to get in to see them within the next 2 days. So we schedule it for that friday morning. We went in and learned about Enzymes and how Jace's body doesn't secrete Enzymes to help him digest his food. So now with every meal we needed to open up a capsule and give a 4 week old baby applesauce with Enzymes on it. Then check his mouth for left overs because they can irritate his gums. We started Enzymes from that day forward and Jace started to be able to sleep!!! It was amazing! At 5 weeks old he was sleeping 6 hours at night! I was starting to feel myself again. I was so grateful that he was sleeping!! It was a wonderful blessing. 
Jace has had multiple treatments added to his daily life since that day and I will post soon about his daily routine. I just wanted to write about his diagnosis tonight.   

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