By Gabrielle. pray4trax necklaces available in the little vikings Etsy shop.
Oh, goodness, but I enjoy browsing through Kassi Bacquet‘s life with her five lovely babes. Her experience began with the birth of her son when she was in high school and ends with the arrival of twins, one of whom was born with a fatal genetic disease. I thought we could all glean a lesson or two from this mama, especially the honesty and grace she carries with her daily. Please enjoy her words, Friends!
Q: Tell us about you and your beautiful family!
A: Gosh, my husband and I are both thirty-four and very young at heart. I had Tyler at sixteen, so he and I have always been pretty close…although now that he’s a teen and almost seventeen, he has far less time for dear old mom! We have a lot of dance parties at home with my two daughters – Tannyn, who is nine, and Tayli, who is six – and the twins, Tavvi and Trax, who are 19 months. Our home is loud, crazy, and wild almost all of the time! It’s never quiet until the kids are in bed.
We’re a family of surfers. Dan, my husband, and the three older kids surf competitively here on the gulf coast. We love the beach and now that the babies are older, they are surfing, too.
Q: Your babies are almost two, but you’ve got older ones. How did this pregnancy differ from the rest?
A: Being pregnant with the twins was a trip. I didn’t find out I was having twins until I was almost 20 weeks and went in for the gender ultrasound. I wasn’t gaining much weight, which was totally different than my other pregnancies where I gained sixty, eighty, and forty pounds! I felt good all the way through until the end when my stomach was so huge I couldn’t even sleep in my bed and had to buy a big reclining chair off of Craigslist. I slept in that the last four months of my pregnancy.
With Tyler, I was a baby having a baby and it was very hard emotionally for me. I felt great physically but lost many friendships, went to a high school for pregnant girls, had very low self esteem, and felt lost and scared. Having the twins was great; it was my fourth pregnancy and planned, I knew what to expect, and was just so excited to meet them!
Q: How did it feel to be pregnant with twins?
A: Not knowing I was carrying twins until halfway through my pregnancy was a huge blessing. I think that if I had known, I would have worried myself to death. After finding out, I would get concerned whenever I wouldn’t feel baby b (Trax) move. I would have to push on my left side where he was laying and prod at him to move. Also, at our ultrasound we found out he had a hyper-echoic echiogenic bowel in utero, which was a soft marker for Down Syndrome or Cystic Fibrosis. I did a lot of praying for him and Tavvi while I was pregnant!
I felt great, walked two miles every day (even when my belly pretty much hung to my knees!), and had a good amount of energy. I had no problem caring for my other kids and was never on bed rest. For me, the twin pregnancy was one of my easiest pregnancies. A total blessing!
Q: Tell us the story of your delivery.
A: Oh the delivery! You sure you want to hear this? It was pretty gross!
I was 36 weeks and so uncomfortable, so I planned an induction date with my doctor. On the morning of, I was full of excitement and calm! Baby a (Tavvi) was in position, head down, but Trax was still breech. I was against a C-section and asked if I could deliver both babies in my room (they like to do twin births in the OR in case of any complications with the second where a C-section is necessary), which my doctor happily obliged.
They gave me Pitocin and we played the waiting game. I stayed at four centimeters for a long time so they upped my drip. My contractions were coming hard and fast without any more dilation. Finally I asked for an epidural which I had never had before and I was so nervous. After the epidural (which hurt like all get out!) I finally relaxed and within ten minutes I went from a four to fully dilated! I remember the nurse saying “Don’t laugh, don’t cough, baby a is RIGHT there and we need to wait for the doctor!”
The doctor arrived and two minutes later, Tavvi was in my arms. I delivered her myself by pulling her out and she came out holding on tightly to my bracelet. It was surreal and wonderful. While they cleaned her off and weighed her, my doctor broke Trax’s water and it sprayed everywhere – all over me, all over my doctor, on his shoes, and in the nurse’s mouth! It was disgusting and hilarious all at the same time. Trax was still breech and I’ve never pushed so hard. That boy would not budge! Finally the doctor put his whole arm up there and tried with all his might to turn Trax around, which he couldn’t do. He realized that Trax was stuck behind my bladder, so they put a catheter in and drained my bladder which gave Trax more room, and he turned around and was head down. I pushed some more, grabbed his little head and pulled him up to my chest. I was elated. They were both perfectly healthy and weighed six pounds, four ounces, and six pounds, five ounces.
During my delivery we had a room full of looky-loos: Dan, my mom, all three of my kids, my sister, my niece, my doctor and nurses, some NICU nurses, and a handful of random hospital workers who had never seen a vaginal delivery of both twins. It was crazy to have 20 plus people in my room sharing in the birth of my twins. They’ve been special since day one!
Q: What were those early days with newborn twins like?
A: The early days were crazy. They were so little. I have never had such little babies before! But it was great. I adore babies and love cuddling, nursing, and being lazy in those first few weeks. My mom and step-dad were in town so we had some help with the older kids. When we realized that Trax was losing weight despite all the milk he was drinking, that’s when things got hard.
Q: When did you learn that there might be some difficulty with Trax’s health?
A: After a week of breast feeding, we realized that Trax wasn’t gaining. We took him to his pediatrician who told me to pump and feed him breast milk through the bottle so we could keep track of how much he was eating. He was on a very rigorous feeding schedule. He kept losing…and losing. And I felt like all my energy was going towards pumping for Trax and breast feeding Tavvi. I was a machine. I was so tired.
Finally at his two week visit the doctor told us that his newborn screening came back positive for Cystic Fibrosis. Dan and I had no clue we were even carriers, so this news was a shock to us. She made arrangements for us to go to Texas Children’s Hospital for failure to thrive and the thought that he had CF. We went right away. We spent a week at children’s with both babies and stayed at the Ronald McDonald house or slept in the waiting room. Dan never left Trax’s side in the NICU. After many tests and many different doctors seeing Trax, we were adamant about him getting the sweat test done to confirm that it was CF which we knew in our hearts it was. Two weeks later at four weeks old, we got the call with the official diagnosis of Cystic Fibrosis.
To hear that your baby has a fatal genetic disease was so hard. We were crushed but took immediate action. A team was formed and he now had two doctors, a nurse, a nutritionist, and a social worker. They got him on pancreatic enzymes right away and almost immediately he started gaining ounces.
Q: Describe CF for those of us unfamiliar with the disease. What are his treatments like? How does it affect your family?
A: Cystic Fibrosis (CF) is a genetic, terminal disease that affects the lungs and digestive system. People with cystic fibrosis have unusually thick, sticky mucus that can clog the lungs, which can lead to life threatening lung infections. The mucus also obstructs the pancreas, which stops the natural enzymes in their bodies from breaking down food and absorbing its nutrients. CFers can have a variety of symptoms like persistent coughing (sometimes with phlegm), shortness of breath and/or wheezing, salty skin, poor growth and weight gain (failure to thrive) due to the malabsorption of food, frequent lung infections, greasy, bulky, stinky stools, and many bowel movements a day.
Before any meal, Trax has to take his pancreatic enzymes, whether it be a meal, a cup of milk (or Pediasure), or a snack. Enzymes are key in helping him keep his weight on track. He also has issues with stomach acidity, so he’s taking Prevacid to assist with that. Most days Trax has two, 30-minute airway clearance and nebulized saline treatments, where he wears a special vest that shakes him to help break up the mucus in his lungs and the nebulized saline to assist in that.
When Trax has a cold, his treatments are increased to four times a day. Whenever Trax comes down with something, Dan and I are on high alert because if his O2 saturation levels drop, it’s straight to the hospital we go. He’s also dosed with antibiotics from his CF doctor, as bacterial infections happen often and are common with CF.
All the treatments can be daunting. I never look forward to them since Trax isn’t a huge fan and they’re very time consuming. That has been hard for our family. We aren’t the best. I’m not the best at managing my time, so on busy days I may forget to get a treatment in. Which sucks and I always feel really guilty about it. When any of us are sick we have to quarantine ourselves from Trax. That has been the hardest. If he gets sick, it can easily become something serious where he may need to be hospitalized.
So when my six or nine year old has the flu and I can’t cuddle her in her room and hold her while she’s sick because I’m with Trax and Tavvi trying to keep them away…that is hard. The guilt I feel as a parent and not being able to be with all my kids when they need me has been the hardest. Other than that, we’ve just tried our best to live as any normal people with normal kids do. We don’t want to treat Trax any differently than the others. He’ll get the same treatment our other kids do…although I know we’re a bit softer on him sometimes.
A: Instagram has been the hugest blessing! We’ve met some amazing people and can always count on prayer, which I’m never too shy to ask for! Paulie, who makes the pray4trax necklaces (where ALL the proceeds go directly into Trax’s fund) has been a godsend! I swear, she has the hugest heart and without her help we would not be able to afford all our medical bills. Also, my sister has been making t-shirts – the Little Warrior tees – where half the proceeds go to Trax’s fund and the other half go to the Cystic Fibrosis foundation.
Q: If you had one wish that could come true for your children, what would it be?
A: To live happy, healthy lives. Marry amazing people, give me lots of grand babies, and put Jesus Christ first in their lives.
Q: Please finish the sentence: I feel like a mom when…
A: I feel like a mom when I’ve not showered for days on end, I’m wearing the same clothes (usually my husband’s sweats and a t-shirt), I’m tired and maybe a bit cranky, but all I want is cuddles from my kids and lots of kisses…and they give me that love even when I’m stinky and gross.
Kassi, thank you so much for sharing your life with us. The difficulty and guilt you sometimes experience when dealing with the everyday – like routine childhood colds or balancing Trax’s treatments with your family’s busy schedule – made me stop and think. A lot. I once read that Cystic Fibrosis feels like breathing through a straw or drowning above water. It breaks my heart. Consider many, many prayers sent your way from Oakland.
Friends, something Kassi mentioned – “We don’t want to treat Trax any differently than the others” – must be near impossible as a parent, don’t you think? Do you ever find yourself spending much more time on one of your kids? How do you make it all even? Or is that even possible?