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.   

Doctor appointments

We had to go to the doctor and get some chest X-rays done for Jace a few days ago. I feel so bad for Jace every time we go to the doctor because it's a lot of waiting, sitting, and new scary faces. Jace always handles it like a champion! The boy is amazing! We also went and saw a doctor to get a full check up on his development. He is doing well, but probably should be saying a few more words than he is. They checked his ears and it looks like there is fluid behind his ear drums. He has had 3 ear infections and I think that he has constant ear pain. He has been having the hardest time sleeping lately and I think it's his ears. So we are going to go see a specialist for that in a few weeks. Next week we have to go get some labs done and have a normal 3 hour CF appointment on Friday. He is growing up so much! It makes me happy, but sad to see him grow up! I just love my little baby!!

AZ fun! Treatment not fun!

We recently moved to AZ for Jared to go to Midwestern Podiatry School. We really enjoyed living in Utah, but are grateful to be back close to more family. Jace is so happy to be in AZ and have a pool!! We go swimming all the time and he loves it! He is a little fish! It has been hard feeling like a single mom sometimes, but I know it will be worth it. The hardest times for me are when I have to do his breathing treatments both times instead of just the morning. Jared usually does the night treatment, but when he has to study I get to do it and it sucks!! Jace sometimes fights the treatment the whole time and is getting stronger so he pushes, kicks, screams, etc for the breathing treatment part. It is overwhelming trying to hold down a little kid. I feel like I am the worst mom ever on days where I have to literally pin him down to do something that will be make him better. Tonight was one of those nights. He usually doesn't act like this, but tonight he did and it was hard. Tonight I hate CF. But I am grateful for the medicine that is helping him stay healthier longer! He has not had to get on any antibiotics since moving to AZ!!! YAY!!! Maybe the weather here will be better for him!!

Running

Having cystic fibrosis comes with many challenges. One of these challenges is that it can be hard to breath. I went on a run with Jace the other day and I hadn't been feeling the healthiest so near the end of my 2nd mile I started having a hard time breathing. I got a lot of mucus stuck in my throat and I kept coughing. I looked down at my little boy in the stroller and wanted to cry. I was having a difficult time for this short moment, but Jace will feel like this for his whole life. I got home and just held him as tight as I could because even though he won't know any different - I do. I know his life is going to consist of hospital visits, doctor appointments, medicines, hand sanitize, etc. I love him though and will do anything I can for him!

May

i haven't written a lot in a while because life got a little crazy and busy. Jared and I both graduated in the beginning on May and so April was crazy busy with school and work. Then as soon as we graduated Jace got sick. He first got the stomach flu for about a week and we ended up having to go to the hospital I the middle of the night to make sure he wasn't too dehydrated. It was a bad 4 days of no sleep. He only slept for small amounts of I held him. Then after he started getting better and he started eating a little more he got a double ear infection. That was horrible too. He got on antibiotics and we had to give him Tylenol every 4 hours to keep him happy. That lasted the whole 10 days while we were on antibiotics but as soon as they were done I took him into the doctor because I wasn't convinced he was better. It's because he wasn't. He still had the ear infection so we started the 2nd round of antibiotics. I guess I should add that we also have to increase CPT (pounding on his chest for 45 min) to 4x a day instead of the normal 2x. So the days become long and exhausting. So final we finished the second round of antibiotics when I took him in to the doctor and he said they looked clear! Hurray! I was so happy because we had this huge Yellowstone trip planned just a few days later do I didn't want him to be sick for it. So we went to Yellowstone and half way through the trip we get a call from his CF doctor saying he cultured a bad bug. I just about died because we weren't anywhere close to a pharmacy and I only got a message and nothing else because I was not in cell service range. So I was so stressed out and called the doctor about 8x before I got a hold of her and she told me he needed to get on another round of antibiotics!! This kid is 9 months old and has been on 5 different antibiotics. I am grateful for them but they screw up his appetite and his bowels. I really don't like antibiotics. So hopefully this round will kill the bug and Jace can start feeling better. Poor kid handles being sick so well!! I love him so much and wish I could take away his pain! 

8 months

Jace is 8 and 1/2 months old!!! I can't believe have fast time has flown by. Jace started crawling at 7 1/2 months and has perfected it by now. He can get from one room to the next so fast. He loves to be where ever his parents are so anytime we leave the room he follows. He has his 2 bottom teeth and his top teeth are starting to come in. Jace loves kids - he will sit and crawl around and watch when kids are near. He loves our cat - Bella. He will play with her all day everyday if I let him. She doesn't always play nice though :(. His first words were dadada and then he started saying mamama. Now he switches between the two. He hasn't really had a first word yet. He loves balls. Especially volleyballs!! He will play with those all day every day.
Jace has been sick for the whole month of May and it has been really really hard on me.
Cystic fibrosis has played a huge part in our lives, but I feel like it hasn't taken away everything.

vacations!

Tomorrow we are going to St. George for the weekend and even though I am excited I am a little overwhelmed. Just the things I have to pack for a baby is crazy.

• medication (enzymes, vitamins, prevacid, albuteral, pulmozyme, salt)
• nebulizer and neb cups 
• big pan that we have to boil our neb cup in every night to sanitize it.
• breast pump (because I still have to give Jace one bottle with formula in it for the extra calories)
• Formula
• timer and percussion instrument for CPT
• Baby food (especially applesauce because that's what we use to put his enzymes on)
• baby spoons
• burp clothes (because he spits up a ton and it's orange because of his medication)
• bottles
• bottle cleaner
• clothes
• diapers
• boppy
• toys
• blankets

Just so much added stuff with CF. I am grateful for all the extra stuff because it helps his lungs, but it can be a hassle to try and get everything packed and ready for a 2 day trip. Alright well I better stop writing and better get packing :)