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 :).