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 :)

CF sucks, but I need to be positive

I have been feeling depressed recently. I feel like when Jace first got his diagnosis I just pushed through the pain to do whatever it took to make sure Jace was getting all his medicines and making sure he was doing okay. Now he is 5 months old and I feel like his diagnosis has hit me with a ton of bricks. I didn't know how complicated CF is when we first got diagnosed. This disease is life-threatening and scary. Is my son going to die before me? possibly. That fact sucks and hurts so bad. My friend described it perfectly the other day. It felt like as soon as Jace got the diagnosis a timer started and it keeps clicking in my ear reminding me of the time I have left and that I need to make the time meaningful and wonderful. I know I need to stop thinking about it though and start thinking about positive things that are going on with CF. Like I get to wake up every morning and be grateful I get another day with my son!

Yesterday I took Jace to the doctor because he kept pulling on his ear and he hasn't been sleeping well. The doctor said that everything looked fine, but I am just so scared because everyone keeps telling me that as soon as he gets a little sick I have to put him on antibiotics to make sure he doesn't get sicker because it can go from bad to worse in a split second. I don't want my son to have to go to the hospital. The first time we are there I know I am going to have a super hard time! I am trying to avoid the hospital for as long as I can!

Jace is such a sweet and special boy full of love and happiness. I hate that he has to go through this, but I will do whatever I can for him to make it less hellish.

Sleeping

Jace has slept through the night since 5 weeks old! We have been so blessed with such a good baby! Lately though he decided to go to sleep later and later. We tried to let him cry in his crib in 5 min increments with me going in to calm him down in his crib. He did really well with that, but I didn't. I have the hardest time letting Jace cry. He is the best baby ever and to hear him cry makes me cry.
This is hard that I can't hear him cry, because sometimes I have to let him cry so that I can do his treatment. It is the hardest thing ever! I hate that I have to let Jace cry sometimes for his own good. Why does it break my heart so much?  I just want him to love his treatments, but I know that's almost impossible. The only way I will do his therapies now is if he is asleep in my arms. I hate that I have to do this to him, but know it's for his best. I love him so much and hope his life gets easier. I hate that he has to have cystic fibrosis and I would do anything to take it away from him!!!

life sentence

When we first got the diagnosis of cystic fibrosis I felt like my son was getting a life sentence. I still sometimes have these moments and they hurt. I would do anything to take away his pain, his struggles, his tears! As a parent it is the hardest thing to watch your child suffer. I know this is just the start of that suffering for him, but I will be there for him the whole time!!!
Jace is gaining weight and looks like a super healthy, happy 5 month old. You would never look at him and see cystic fibrosis. That is a good thing and a bad thing. I love my son more than anything and will continue to give him all the medication the doctors tell me to.
I don't want this to be a life sentence and so I will do everything in my power to give him a long life!! I do get depressed sometimes though when I read or hear stories of other children dying before age 25. It makes me so sad! I am scared for the future, but it is looking bright with recent medications to help make his life longer. I will continue to update this blog on our life as we face these trials.
I want people to understand cystic fibrosis because knowledge is power. I still learn new things everyday about this complex disorder.
Jace is my hero and I feel like he is going to be just fine, but the fear of loosing him is scary.

Many doctors

After our first appointment we learned that we had to go back up to Primary Children's at least once a month for a routine check up. We also needed to continue to go to our primary pediatrician to make sure he was getting his vaccines and hitting all of his milestones. I'm pretty sure we have been to the doctors office over 15 times and my son is only 5 months.

We also go to the pharmacy multiple times a month. We do Chest physical therapy 2 times a day and pulmozyme 1 time a day. These past 5 months have been hard. These few pictures just show a small amount of what we go through in a day. It is not easy, but it is worth it for him to have healthy strong lungs. I don't get out of the house much because I don't want Jace to get sick. It is really hard to go to church and see other cute babies out of the house, but I know it's for his safety.

October 17, 2014

Our first doctor appointment!

I was ready to go and have some questions answered, but I wasn't as ready as I thought I was.

It was a four hour appointment talking to doctor after doctor trying to get as much information in as possible. Jared and I went home emotionally wiped out.

I honestly don't even want to write about it because it was so draining and just so much, but the main points were that Jace had to start taking enzymes before every meal. So we had to get him on a schedule because he could only have a certain amount of enzymes everyday. We had to watch how much he was eating and we had to give him a bottle at least twice a day with formula added to it so that he could gain weight. We learned that he was having a hard time gaining weight and that he would for the rest of his life. We also had to start giving him vitamins everyday (they are gross and orange, they are my least favorite part of the day).

We also learned that he would soon need more lung exercises to help his lungs develop. Also he needed miralax added to his bottle because he would need to poop once a day at least to keep the mucus loose in his bowels, because they could get stuck in there and clog his system.

Sweat Test

Jared was able to take work off the next week after we got the call and we went up to Primary Children's hospital and got the sweat test done. It was horrible to watch Jace cry during the test. They put these metal bands around their arms and have these electroids on them to catch the sweat to see how much salt was in the sweat.
*People with CF sweat out salt more than the average person so this test is done to see how much salt they produce.
Jace's numbers came back later that day as super high and that he for certain had cystic fibrosis. I got a call at like 4pm from the Cystic fibrosis doctor up at primary children's hospital saying that we needed to get him in right away! So we scheduled an appointment for that Friday.  

This picture isn't Jace - I didn't get a picture while Jace got his done. I was standing next to him holding his binky and giving him "sweeties" (sugar water).

The Call

Jace was 2 1/2 weeks old when we got the first call.
I remember it like it was yesterday. I was in the care driving home from Target when my phone rang and it was my doctor. He said "Since Jace's results have come back positive for cystic fibrosis you need to schedule an appointment with Primary Children's to go get a sweat test, and a genetic test done." My mouth dropped. Wait what?? my son has cystic fibrosis. What is this? are you sure? what is happening? My mind went back to what I remembered reading about CF when it came up 6 weeks prior to this conversation. I couldn't remember anything except it is genetic. I then said to the doctor "Are you sure". He then stopped and said "Oh my gosh I am so sorry I thought someone from the state already called you to tell you. I would've been more gentle. I am so sorry." I was so confused. I then thought to myself. You would've been more gentle? Is this a big deal? What is going on!!!
After I got off the phone I walked inside and started crying. I told Jared and my mom what the doctor said and we all got on the internet right away and started researching it.
I grabbed Jace and hugged him and kissed him all over. I wanted to take it away, I wanted it to not be real.

 

How could this small, sweet little boy be sick?? 

I talked to the nurse from the state later that day and I said "Well these results don't mean that he for sure has CF right? It just means that he might have CF?" She then told me that with numbers like his he most likely had CF. She had never not seen numbers this high come back not positive. I was devastated. She took away all my hope that Jace might be ok. 

(looking back I am so glad that she didn't give me hope!! I am so grateful for her!!!)

The birth

As I mentioned in the earlier post the ultrasound specialist mentioned these two words to Jared and I while we were trying to figure out what was wrong with my unborn child - CYSTIC FIBROSIS. We went home and looked it up and immediately dismissed this possibility! The thing we read was that it was a genetic disorder that comes from both the father and the mother. We both didn't have it in our families so we said that this was not what was wrong with our son.
So we had Jace Roland Minson on September 15, 2014. BEST DAY EVER!!! He came out just fine and ended up not having a blocked bowel like they thought. He was able to poop and seemed like a perfectly healthy newborn.

We took him home and became parents. Man was that hard. Being a mom is not the easiest thing in the world. I was not prepared for the whirlwind that came. But it was the greatest thing that has ever happened to me!

36 weeks!

At 36 weeks pregnant we went in for our routine ultrasound and the ultrasound tech called the doctor in. I froze!! There was obviously something wrong. My heart dropped I looked at Jared. He knew I was scared. The doctor came into the room and looked at the ultrasound and said that our son had "echogenic bowels".
I went home and googled it - DON'T do that! I read everything that it could be, but really they had to no idea.
We went to a specialist and did another ultrasound. We got a birth plan and were ready for any problems to come when our son was born. We had a surgeon on hand, we scheduled to induce me a week early, and we thought we were ready. Those three weeks were really hard for me - not knowing sucks.
Oh and also the "specialist" gave us some ideas on what it could be. She said it could be down syndrome, cystic fibrosis, or nothing. She played it off like it wasn't a big deal and we shouldn't worry - but I did.

February - July 2015

We got pregnant again!!! We were so excited that this time there was a heartbeat!! We couldn't wait for this little child to come into our lives!

At 16 weeks pregnant we found out that we were having a little boy!!! I had a feeling it was a little boy! I didn't really have morning sickness! I had a pretty easy pregnancy. I gained a little too much weight and had to take the 3 hour glucose test (which ended up being 5 hours). Life was going good!

Jared and I coached volleyball that summer together and had so much fun! Life couldn't get any better! We are madly in love, pregnant, and ready for this kid to come!

Miscarriage

Jared and I found out we were pregnant Sept. 2014. We were so excited to have a little baby and the timing was perfect. We went to the doctor and there was no heartbeat. It was the saddest thing we had ever faced together. I had to get a D/C at 11 weeks along because I was bleeding out too much. It was so painful and hard. I am so glad Jared was there for me! It broke our hearts, but we decided to keep trying to get pregnant because we wanted a little baby so bad!

Life has some crazy twists and turns

My life is so exciting so I decided it's time to start blogging again! :) I am going to start form the beginning of when our life changed forever and for the better :).