Life with Cystic Fibrosis: Baby Anthony’s Story

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The day my whole world stopped, was the day Anthony’s father and I discovered that our precious, beautiful baby boy Anthony Xavier, has cystic fibrosis. I was terrified at the thought of anything being wrong with him and I didn’t want to think anything was wrong with my Anthony Xavier. I wanted to be like other moms and have play-dates and do more social things. He was just like other babies; learning, crawling, exploring, and babbling away. The issue was internally; my son’s body is plagued with thick mucus that affects his growth and lungs daily and that almost took his life. This is the story of life with cystic fibrosis: baby Anthony’s story.

 

When we got pregnant with Anthony, we were beyond ecstatic! Planning all his first moments of life and everything in between.

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Our family of four was about to become 5!In December 2013, a sonogram discovered that our little boy had echogenic bowels. Echogenic bowel is a bright area seen in a developing baby’s intestine.

 

Read more info on echogenic bowels:

Click here

This meant a possibility that something was wrong with our little guy, after I found this out my pregnancy began to grow sour and I became irritable everyday and was upset ALOT. Then, our sweetie pie was born and I was happy again!

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Moms think they have it hard… try having a cystic fibrosis baby. While other moms are toting there little ones around and everywhere, I have to be EXTREMELY careful about where I take Anthony because one false move, and its back to the hospital. I cried writing this post, gathering all these thoughts were difficult. At first glance, no one can even begin to believe anything is wrong with him! From the outside, he appears a normal handsome, healthy boy. But Ax (Anthony Xavier) is special because even though he inherited the gene from both his father and I, he is a born fighter.

 

Let me give you a little info on what exactly this is through the cff.org site.

If you click on the link below, you can see all about cf and what it does and how it affects babies.

http://www.cff.org/AboutCF/

Briefly summarized:

Cystic fibrosis affects 30,000 children and adults in the U.S and about 70,000 worldwide, WORLDWIDE. Do you know how many people are on his earth?! If you do a quick Google search, about 7.125 billion people live on this earth as of 2013! That’s crazy that only 70,000 not even a hundred thousand of those, have cf. Out of the whole 7 billion, our son was one of those born with it. The odds of that happening were insanely wild. Out of both sides of the family, Anthony is the only one that we know of, who has cf. You have to get the gene from BOTH parents to have cf, it’s something you’re born with, not something you can catch. His father and I are carriers of the gene, and we had no idea! Being a carrier of the gene and having cf is different. The ones who are born with cf are affected, not the carriers, get it? Lol, Confusing, I know.

The day we found out our son had cf was a week after his sweat test results came in. When the doctors sat us down and told us the news, we were blank at first but my face was expressionless and my heart was shattered. Our whole world changed. Having a special needs child is difficult and something new to us considering our other children (2) from previous relationships didn’t have cf and were healthy and normal.

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We were handed many books and pamphlets on cf and even though it was all overwhelming at first, this is how we met the wonderful team at nemours that are still helping us with Anthony’s cf!

To read about the sweat test, click on the link below:

http://www.cff.org/aboutcf/testing/sweattest/

 

from Cff.org site:

In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

Clogs the lungs and leads to life-threatening lung infections.

Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

This is what our baby has to go through, every day.

The sad part about this is, there is not cure for cf, it is for life.

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My sons constant hacking (as loud as a teens) can scare the living daylights out of people when we go shopping on the days he’s heavily congested. They think he’s sick with a cold and I’ve even been scolded by some elderly people on how I need to care better for my child!! They don’t even know what he has! Really?!!

The boy catches anything in the air easily getting sick, and worse. When he was only 2 months old, he caught pneumonia and mrsa and was in the hospital for 1 month. Below are some pictures of our stay at nemours:

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Sissy came to see me!

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Daddies here♥

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squeezing mommies finger♥

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We don’t know how he caught it, considering he’s always at home. They said it entered his skin (due to his sever eczema on TOP of the dry cf skin). This was the hardest month of my life. This is the second time I was separated from my baby. I got heavily depressed and felt like the weight of the world was on my shoulders. Being away from my 4 year old was so hard. I’d go back and forth from the hospital to the house. At the time, I was in school and I was still blogging from the hospital too!

Doctors found this both amazing and interesting…

The funny and strange thing to the hospital was, when doctors and cf staff came in to meet Anthony’s mother, they were a bit astonished to see that the babies (my sons) mother was black, not white! Not that it’s completely rare, but apparently it’s rare in the U.S. I am from the Dominican Republic, a Spanish Caribbean island near Puerto Rico, and this is a strange and unknown disease for many in my country. My families and cousins in DR were shocked to hear that something was wrong with my baby, and were saddened that future trips to meet Anthony as a toddler (I had planned to take both sons over there) would never be. Also meaning, it would be hard for me to visit and see my family (last visit was at 18 years old), I was crying over this just last night.

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But I digress…

Each of the doctors and cf team would enter the room to see a gowned young pretty black girl holding a beautiful white smiling baby boy, that would shock me too lol! He takes after daddy; his genes are mighty strong I can tell you that!

The majority of the population in the Dominican Republic doesn’t even know what cystic fibrosis is.

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Beautiful beaches in the Dominican Republic

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They found this odd because most mothers of cfer’s (kids with cf nickname at Nemours hospital) are Caucasian, not African American. This intrigued many doctors into researching more on baby Anthony’s illness and interested further research in how many potential cfer’s there were in my country! This caused quite a stir in the hospital, and every nurses fell in love with our Anthony when they cared for him. I stayed many nights along with his dad to care for him. Just before he sadly fell sick with pneumonia and mrsa, I made this heartwarming video of me singing to him that touched many peoples hearts:

 

Read more info here about pneumonia and mrsa:

http://www.webmd.com/parenting/mrsa-and-staph-infections-in-children

 

When he was born, he had to stay in the niccu due to meconium ileus (a bowel blockage) first sign of cf in many babies.

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Having to depart from our little angel, one of the hardest moments in our life

 

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when our little angel was born by c-section

 

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Grandma would sing to him everyday and hold him

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kiss goodbye before leaving him in the niccu

 

He wasn’t able to eat for 5 days, and he fought hard to gain weight every day, which he still does. He made it out alive and BAM, falls right back into the hospital. He lost all his hair, had to be on oxygen machines to breath, God this is hard to write, (deep breath) It was one of the most difficult things I’ve ever had to do in my ENTIRE life. To see our child sick and helpless and not being able to do anything but sing to him and hold his hand, I would not wish this on any mother at all. Both grandmothers visited, my mother in law went frequently though lol she love spending time with him.

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My mom feeding him ♥

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Tony a good friend of my moms, like a father to me and pretty comical, he too came to see baby Anthony

I felt so upset!

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I felt angry at first with God, and questioned why he would give me a sick child, which wasn’t very nice at the time, but who wouldn’t get upset and hurt at first? However, it took a lot of hard work, and I know my purpose. I am no longer angry, just sad that my son’s life span could end at 40-50 years old. Even more saddened that he could possibly be having a lung transplant (like many cfer’s) at the age of just 20. My sister was in the Dominican Republic at the time due to personal important reasons, and I understood that she had to go. She loves her nephew so much, and was hurt to see all the pictures of him in the hospital and cried so much over there. She really wanted to be there for us:(

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With all the advanced treatments there are for cf, Anthony will have a long future ahead of him, and I am grateful for that. Having two other children to care for can make things challenging at times, but I’m lucky his brother and sister are so helpful and understanding.

I am thankful for his team at Nemours!

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They help him monthly to ensure he’s growing correctly and to guide us! If anything is wrong or I have questions, they are the first people I call. He has a long list of medications that are reviewed each time (about 20 daily prescriptions), weekly and monthly trips to the pharmacy to pick up these prescriptions as well.

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Happily taking his medicines

 

I learned about creons (enzymes he takes with protein meals like meat and milk) pills to help him digest the fat, since his pancreas fat, this helps him to reach his target weight gains.

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When he was in the hospital with pneumonia and mrsa, his weight dropped dramatically and they put a g-tube in him to get extra feeds at night. This was not new to me since I worked as a nurse assistant long ago and saw all this. However, on a baby, THIS was new. I learned though just like I learned everything else. It was overwhelming at first, but with the help of my mother in law, I learned quickly.

He then had it switched to the button. This went wrong quickly because he yanked it one night when his dad was changing him, and had to be rushed to the hospital. AFTER THAT… he had a mini one button placed which I just learned how to change myself yesterday. Much easier and feedings at night with the kangaroo pump are going somewhat ok. He eats by mouth in the day, by night, to catch up on extra calories and weight gain; he receives milk through the button.

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napping with daddy

 

 

Around the age of 4 months, my mother in law told us about the salt room halo therapy. A natural way to help Anthony break up the mucous in his lungs and to help him breathe easier. I am so grateful she found this room. Check out more info here! She’s become a huge part of Anthony’s life and has helped me become an amazing nurse to him! Salt therapy benefits Anthony’s lungs immensely! Going 2-3 times a week makes all the difference. We still battle eczema everyday. I keep him in long outfits, his skin moisturized and cool so that he wont scratch.

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His treatments can be read about here so you can see daily life with a cfer:

http://www.cff.org/LivingWithCF/StayingHealthy/CFInfantCare/

The unexpected in life can happen, whether it’s a car crash, having a special needs child, and life changing experiences. It’s how we handle things that make all the difference.

Please check out these links, and spread cf awareness! You never know if you, your child, or even your parents could carry the gene and pass it on to you. It’s important for you and your spouse to test your genes to make sure you don’t have the genes because you may very well have a cfer too. Despite all the hard works and syringes, extra feeds, pills everything, I love my little cfer and he truly is a miracle and has come a long long way♥ The battle is almost over, the first year of life is the most difficult. He is 10 months today, crawling everywhere and cruising. He’s so smart and friendly, a very lovable little boy♥

He has a big family and many cousins who love him♥ (Nicholas, Rudy(my son) nathalie, Anthony and Nathaniel♥) niece and nephews♥

 

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If you have any questions or comments, ask Linda below. Also stay tuned for weekly update posts on Anthony and how he’s growing. I’ll be going into more depths of his treatments and everything we do to keep him healthy, learning everyday, thank you and get involved! Raise cf awareness!!

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