My beautiful son grew in my tummy for more than 9 months. I saved every penny for him. I ate the healthiest foods. I sang to him. I made him a nice nursery. I made sure he would have everything he could ever need. My heart grew each month but it was nothing compared to when I finally got to hold my baby boy. (after a quite horrible labor and delivery, don’t get me started) It felt like nothing else could ever matter as much as him ever again. He was perfect when he was born. He was 9lbs and 10 oz with plenty of hair. We went to our first Pediatrician visit and the Doctor told us we may have the most perfect baby God ever made. The few weeks following were rough. My baby, Jude, couldn’t go an hour before he showed signs of hunger. I was worried I wasn’t producing enough milk for him as I had been breastfeeding since he was born. He wasn’t gaining much weight. I was blaming myself. Other than that, his health was seemingly great. He was thriving. Then I got a phone call. A phone call that put me on a path I hadn’t prepared myself for. It’s not the path I would wish upon anyone, let alone my own son. Regardless, it is a path, it is a life. The Doctor told me that my son was very likely to have Cystic Fibrosis(an incurable disease that wreaks havoc on the lungs,pancreas, kidney and liver) That explained his extreme hunger so my guilt subsided. I was familiar with the disease, not completely clueless. (Sometimes ignorance is bliss) I cried for pretty much an entire day cradling Jude in my arms praying that maybe he didn’t really have it. After getting further testing, I got the second call confirming my fears: He has CF and its on the severe side. Treatments are starting soon and my normal baby won’t feel normal to me anymore. In the days after going to the CF clinic to see the doc and the nutritionist Jude has begun coughing and breathing heavily.The reality of his disease is starting to hit me. When I see him struggle to breathe I wish I could give him my own breath and suffer for him. It’s a helpless feeling. Like I said before, it’s not the path I would have chosen for him but I believe this little one is going to lead a special life. My family is blessed that he was diagnosed so early, at 5 weeks old. The research is looking more and more hopeful as better and Better drugs to treat CF come out. After getting all my crying out, I’ve decided that I have no choice but to be strong for him. No more crying. It’s in Gods hands and I fully trust him. It’s not gonna be easy, but nothing worth doing ever is. God has a plan for Jude and our family. I will write updates on Jude here every so often. His disease is not curable but it is treatable. We love his team of Doctors so far and believe he is going to live out a normal life!!
Its gonna be a great adventure.
Judes Journey Part 2
3 weeks ago my husband and I found out our 5 week old baby Jude has Cystic Fibrosis. We went to a CF Clinic and spoke to several different Drs, did a fecal exam and sweat test. The Dietitian had us start salting and adding extra vitamins and formula to his bottles, easy enough. Both tests came back high-positive for Cystic Fibrosis a few days after the visit. When I got the call with the results, I felt like I had lost something. Something I have been working hard to get for a long time. My dream of having a big family just got a lot more complicated. I didn’t have a traditional family growing up. I was an only child of divorced parents. My dream was to create a beautiful home and have a big family to share it with. My husband and I have done everything right.We had a fairytale courtship and fell in love within a few dates. We were together a few years, went though a lot together and got married. We bought a house a year after being married. We filled the house with everything we could possibly want and more. We dreamed of the ideal family life. I learned how to bake the best chocolate chip cookies, as if that were somehow a part of a great family. I felt like a big family was an attainable dream. I’ve always wanted to adopt but after having Jude I want another child that’s my own.I wanted Jude to have a sibling to grow up with. I wanted 3 children at the least. I cannot help but feel like I’ve lost that. The chance of us having another child with CF is 1 in 4. I do not want to take that risk and I do not want to to invitro treatment to have another baby. If God intended us to only have Jude,we need to accept that. We are just so heartbroken right now. We are afraid of the future. The last thing we want is for our son to be sick. My heart is breaking for Jude. It’s unfair to him.
With that said, I’m hopeful for Jude’s Future. He’s getting preventative treatments to prolong his life. He will be 2 months old in a few days!
We went to Jude’s 2nd Cystic Fibrosis visit and this is where is really gets to be alot for us. We saw several different drs and nurses and even a social worker (who was useless and did not want to help us or listen to us) We learned details about his disease and how we would begin treatments. For now, he was put on enzymes to help his pancreas digest his proteins and fats better. We learned that his pancreas is insufficient, which explains his extreme hunger. I had been letting him eat whenever he wanted. He’d been eating several bottles of formula (with extra half scoop per serving to up calories). We were pleased to learn at this visit that despite his pancreas, he gained 2 pounds! I must be doing something right. Even though he gained weight he still has to start on enzymes so he won’t be so hungry all the time and he can digest his food better. We were taught how to give enzymes before he eats. We learned about clinical trials and the fact that patients with CF are living longer and longer because of new drugs and early diagnoses. We were given a book from a drug company called “Who am I?” which is an adorable book about a day in the life of a child with CF. We were taught how to do CPT on Jude, which is an airway clearance routine that must be done once a day.We spent 5 hours in the CF clinic waiting for each Dr to make their rounds. We will have to go to the clinic every month until he is a year old and every 3 months after that. Assuming he stays well, it doesn’t seem as doomed and debilitating as I though it would be. They handed us a huge notebook filled with things we would need to keep as reference and things we will need to keep track of. It’s all a little overwheming.
He’s been on enzymes for 2 days now and he seems to be going longer between feedings. I was feeding him every 30 minutes but now its sometimes over an hour!
Jude is such a sweet little baby and seems so healthy and happy. You would never know that anything is wrong.
Judes Journey Part 3
(If you didn’t know, I’m writing these posts in numerical order so go back and read 1 and 2 if you would like.)
Ive been putting off writing this post because its a sore spot and I dont like to harp on things but I do need to write it.
A few weeks ago I was staying home with Jude, who was two months old at the time and now 3 months. He seemed pretty grumpy from the time he woke up till around 11 when I felt his forehead and all of a sudden he was burning hot. He smelled like a straightening iron. I was terrified. He was too young to be getting sick already. Since he has CF getting sick is a much more serious issue than it would be for the average baby. I took his temperature with my Kinsa thermometer, which is the most usefull thermometer Ive ever used and has been the most accurate. You plug the kinsa into your phone and it connects to an app that you read the temp from. You can use it for the underarm, anal or mouth. It will tell you what you should do about the temperature and asks you if you have certain symptoms so when you go to the dr you can keep a record of it. Judes temp was 102.3 so the kinsa app told me to get to an urgent care immediatly, based on his age. I took Jude straight to the urgent care kids that is connected to his pediatrition. I prayed and prayer the whole way there that he wouldnt be sick and it wouldnt escalate any further. We saw the Dr at urgent care, which was an ordeal trying to do the paperwork and waiting to be seen. A bunch of people that came after us went first because they had done the paperwork already and I had to pay a 40 co pay to even be seen. They make you pay that and then after insurance goes through they charge your card with the remaining amount which I think is wrong. Anyways after all thay Jude was finally seen. The nurse was really sweet and Jude was totally flirting with her! The Dr looked at him and listened to his chest. He said his chest sounded clear and no ear infection or red throat. He did have a fever still at 102.3. The Dr ran a flu test and it came out negative so no flu. We did a chest XRay and the dr said he didnt see anything to be concerned about but he wpuld send it to a specialist and call us if anything came up.He told me to give Jude tylenol every 4 hours untill his fever went away. Jude and I went home and when we got home I took his temp and bam, no fever. He still didnt feel good though and was screaming and just being very angry. After a couple hours I finally got him to calm down. Then my husband came home and told me that we need to get to the hospital asap. I had left my phone in the car for the past few hours. The dr had been calling me and I didnt answer. Im terrible about answering the phone but I make sure to check my phone more now. I returned the drs call and was informed that Judes xray showed pnemonia in his lungs. They had a room ready for him at Childrens hospital in dallas so we went right away. Ive never had to go to the hospital on such short notice so I had no idea what to bring so I paniced and didnt bring the things we would need. I did get everything Jude would need but nothing my husband and I would need as Jude was priority. We got to the hospital seamlessly with no traffic or getting lost which was nice. We only had to wait about 10 minutes to get to his room.
He didnt have a fever anymore once we got there.
He was given a bag from a Cf program with a blanket and toys for him and toiletries for us. It was so nice to know that someone cared and understood that the 1st hospital visit is hard for New CF parents. They provided a cool mobile for jude to look at during his stay.
Because they found pnemonia in his lungs they gave him IV antibiotics and wanted to keep him overnight and see how it goes.
I was so unprepared to stay overnight! Next time I will be sure to bring pillows, blankets, clothes and toiletries because my husband and I would have felt alot better with those things. We know now for next time and I keep a bag packed at all times now.
Jude seemed happy the whole time we were there besides having gas and not wanting to breastfeed there. I dont know what it was but he would not latch on at the hospital which led the nurses to think I needed a lactation specialist. They didnt understand or believe me at all. He breastfeeds perfectly fine everywhere else. I think the antibiotics made his tummy hurt and made him feel bad.
We ended up staying for 3 days to make sure the pnemonia cleared up and it did! This hospital visit resulted in more home care treatments. We were told to give Jude twice as much enzymes before every feeding. We were given a nebulizer and would need to begin breathing treatments daily. He was prescribed albuterol twice a day and pulmozine once per day until further notice.
These new treatments were scary to me. I didnt know how we were going to afford them. I hated that Jude would need these treatments everyday for the rest of his life just so he can stay healthy.
Going home from the hospital!!
I think the hospital visit was a wake up call to me as for how much CF would effect Jude and our whole family. When I got home I got serious and more organized. I wanted to make his treatments feel normal and his schedule to be fixed. I wanted the house to be clean and dust free. I wanted to find programs to cover his meds. All of these things had to be done and now if I wanted to make the best of things.
My husband and I got rid of all the curtains in the house as dust is horrible for Judes lungs and the rest of us too. Curtains are too hard to clean so we got rid of them. It brightened up our home and made it seem bigger anyways.
We bought a dyson vacumm cleaner that was recommended by the athsma and allergy foundation to keep our carpets dust and allergen free. We put a humidifier and air purifier for Judes
I got a dry erase board and wrote a list of his treatments so we can make sure we did everything he needs for the day.
I put together a home binder to keep all of our info organized. I also filled out Judes info in the CF binder that the CF clinic gave us. We bought a cart to keep Judes nebulizer in. It has room to keep his vest machine once he needs that as well. The cart is nice to have so that we can do his treatments anywhere.
I use this boon spoon to keep applesause in to feed Jude his enzymes. Hes lucky he gets to eat applesauce. He loves it! We never had a problem getting him to take his enzymes. I use a eat poo pee book to keep track of treatments and feedings.
I found a few programs that cover a percentage of his meds. I found a grant for Jude that will pay up to 15,000 this year for his meds so hopefully all of his meds will be covered for now. Im so grateful to have found these programs!
We are so lucky so have a great team of doctors to help Jude on his CF journey! Iam more confident than ever that Jude will have an amazing life. We are doing the best we can and I leave everything else up to God.
If you or someone you know has CF Please let me know of any other ways I can make my sons treatments and life easier.
Judes Journey 4
When I look at my son its hard for me to believe that he has a chronic illness. He is so beautiful and full of spirit for everyone he meets. He looks so happy and healthy. I was starting to think I may be a little bit in denial about his illness. His enzymes and treatments have become normal so I don’t think twice about it or complain.
I took my son to church camp with me and I couldnt slip further into denial as many adults asked me about his health and how they are treating it. Some thought there were no treatments unless he got sick and some thought he just had one treatment. They told me what a great mom Iam for keeping him healthy and how strong Iam for staying positive but the truth is Im still pretty scared. The future is unknown to me. I see it as selfish if I feel sorry for myself over it. He is the one who has CF, not me. I have no right to feel sorry for myself.
(Books given to Jude at Camp)
There was a camper at camp that I have known for a long time that has CF. Him and my son have to stay away from eachother. When the Dr said he had to stay 6 feet from others with Cf it seemed reasonable but in real life it was painful. I had to say hello to him from a distance even though I wanted to let him hold Jude and play with him. I wanted to give him a big hug and tell him how brave I think he is. I wanted to give him some hope because he seemed particularly beat down this year. It makes me sad knowing that Jude cannot have the commraderie of having a friend going through the same thing as him, it makes me angry. Most people tell me “oh hes going to be so healthy and he is going to be just fine”. I know he will be fine but I also know that life will be hard for him. My church does prayers of administration. They are like prayers on steroids and ones I have gotten have truly changed my life. Through the years I know Jude will need them to stay strong. I know that with prayer, enzymes, breathing treatments, the vest when he gets it and the support of our families and church families will all work together to form a wonderful boy with ambition and drive despite his illness.
Jude is 5 months old today and healthy as a horse. Hes made friends at church and he loves to hear us sing hyms. He doesnt seem to mind his treatments and takes his enzymes with no problem. He started eating baby food and rice cereal. He likes every veggie he has tried! He has put on weight and is no longer underweight!
To find out more about CF and how you can help click here: https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
Thanks for reading! I hope you have a wonderful day!