Fighting For Answers
As a parent, seeing your child hurt or sick is one of the worst feelings you can experience. You want to do everything in your power to help them and take away their pain. You would give anything to change places with them. Fighting for answers as to why they are struggling is not even a question. You do whatever you need to do to get them healthy again.
I’ve read some amazing stories about parents advocating for the health of their children, and today’s story is one of them. Not only did Heather fight for answers during her pregnancy, but she continued to advocate for her daughter’s health throughout her NICU stay, and subsequent hospital stays.
As a NICU mom, I am truly in awe of the strength it must have taken to go back to the hospital once you think you’ve come home to stay. But, as a mother, you must find that strength however and wherever you can. Your baby is depending on you.
I’m so honored to bring you Kyliana’s story, as told by her mom, Heather. You will see such amazing strength from the entire family as they navigate their journey and fight for those answers.
Meet Kyliana
1. Tell us about your baby.
Our little lady was expected to be our Valentine baby, but instead became our Christmas miracle. 10 days before Christmas, in a dramatic entrance into the world, our sweet daughter Kyliana was born. She was born 9 weeks early, at 31 weeks, weighing 3 pounds.
2. Do you know what caused your premature birth?
Kyliana was premature because of a condition that we discovered at 29 weeks. It was then, our world got completely flipped upside down.
Before that, I had an easy, normal pregnancy. No morning sickness, and no concerns whatsoever. That is, until my last few appointments. All of a sudden, she was measuring bigger and bigger. With no real reason why, I asked to have an ultrasound done to make sure everything was ok. That’s where they found the ‘double bubble’.
She was diagnosed with duodenal atresia. A condition where your duodenum (part of your small intestine) didn’t form properly. We were sent immediately to BC Women’s and Children hospital in Vancouver for further testing. We were told we had to deliver there, as she would need surgery almost immediately after birth. We were beyond overwhelmed & overtaken with fear.
Babies start swallowing the amniotic fluid at 23 weeks. Because she had a blockage where the duodenum is, she was throwing everything back up that went down. This was causing a large excess of amniotic fluid in my uterus. It was because there was so much extra fluid and pressure, my body thought it was go time. At 30 weeks, I went into early labour.
Fortunately, the doctors were able to stop labour with an amniocentesis where they removed 5 lbs. of fluid from my belly. Just a few short days later, I went into labour again, and this time they couldn’t stop it. At 3:45am, she was here! And just as fast as she arrived into this world, she was swept away by NICU nurses and doctors. Not only were we suddenly left adjusting to being new parents, but instead of cuddling and bonding with our baby, we could only watch her through the incubator. We had to put our trust into complete strangers to take care of sweet, innocent newborn baby. Although they were strangers then, they quickly became the most important people in your lives.
Two days later our little preemie daughter would need to go for surgery. This was the scariest day of our lives (up until that point), filled with so much fear. These surgeons and doctors hands were bigger than our little Kyliana’s little body.
How would they perform major surgery, and repair something that was so very small?
And what if it didn’t work?
What if something went wrong?
Those questions and about a million other uncertainties ran through our heads as we waited… and waited…. 1 hour… 2 hours… 3 hours went by before we finally heard that it was a success!
She would be in recovery until she woke up and could see her then. A feeling of relief that could never be explained in words swept over us. At the time, we thought the worst was over. Were we ever wrong. We had only just hopped on the roller coaster ride. There were still several twists and turns to come.
3. How long was your NICU stay? What was the hardest part?
Our stay in the NICU was 56 days. Then, we had 1 day in the hospital in our hometown after being transferred home. There were so many “hardest parts.” For us as parents, it was being away from home, watching your baby helplessly day in a day out, and getting our hopes up one day to being crushed the next. There were so many times we felt we were in a ‘one step forward two steps sometimes three back’ situation.
It was 10 full days before we could introduce food to her. TEN. She had her nutrients that she needed through iv, but at 10 days old she was given an ng tube and had to learn from the beginning. For example, she would be given 1 ml (yes only 1 over a 12 hour period). She was receiving less than a drop an hour. Her body needed to learn how to eat and digest. On top of that, she had major surgery, so we knew it was going to be a slow process.
Despite how slow and how hard each moment was, we saw her overcome so many hurdles. The staff was amazed and so were we. She is truly the strongest human I’ve ever known.
Finally, on day 56 we got to go HOME. This was the most exciting day for us, and we were thrilled!
Little did we know, it would be short-lived. Two weeks to be exact. We were home for two weeks, when her regular vomiting and spitting up became even worse. She was lethargic and had become jaundice.
We waited in emergency for hours. We were admitted and ended up staying in our local hospital for 6 days before they told us that we had to be airlifted back to Vancouver. They could not figure out what was wrong. Understandably with her history, they couldn’t take any chances.
This was beyond devastating for us. We just got home and started to get feel for a routine… but our baby girl was so very sick again. And, her health took precedence above all else.
To make a long story short, we were back and forth between home and Children’s hospital for 3 months with our medical mystery baby. Kyliana underwent test after test, MRI’s, so much blood work, and even had a specialist come in to perform an endoscopy that had never been performed on an infant as young as her before. Many of these procedures required general anesthetic and she was put under. This is just to name a few.
It was such a trying, difficult time for us all. Some days, it felt like it may never end. It is excruciating pain as parents to watch your child suffer so much and not be able to help at all. Then they decided to take her off breast milk and switch her to a specialty formula. This was another heartbreak for me as a mom. In the end though, this ended being such a blessing. We finally saw her eat well and be able to digest some nutrients.
After months of uncertainty of Kyliana’s future, she began to show signs of liver damage. It was decided that they could no longer afford to wait and that they needed to do a blind surgery to fix the problem.The problem was, they weren’t exactly sure what it was. Their best guess was something with her bile ducts not draining and cleaning out her liver.
Thanks to a miracle, and AMAZING surgeon and team, our five-month-old survived another major surgery. It went well, and they were convinced they were able to fix the issue. She had a bypass surgery called a roux-en-y. They repaired the issue with the bile duct, removed her appendix and gallbladder and she was once again recovering.
As much as they prepare you, and you try to prepare yourself there is nothing scarier than walking into the ICU and seeing your baby hooked up to so many machines and wires. It stops you in your tracks. You want to trade places with her and take away all her pain. Day by day, Kyliana showed her endless strength and courage and overcame so many obstacles. From something as small as breathing again on her own to her first smile.
She also suffered a huge blood clot in her groin and needed to be given a needle in her leg twice a day for 3 months. I had to give it to her which felt like the most horrible thing at the time.
About a week after her surgery we were discharged again, and allowed to make our journey home, once again. Although we weren’t out of the woods, yet we felt so many emotions, and were so thankful to be walking out of there WITH our baby girl. There continued to be some complications including an infection called Cholangitis from her surgery. We had been prepared for this possibility. As a result of this infection, Kyliana ended up back in hospital to treat the infections five more times over her first year and a half of life. Although it was extremely hard, we were always in the best hands. She has an amazing team of amazing humans behind her, and they take the very best care of her. We are forever grateful to both hospitals, her Pediatrician and team.
4. How are you, your family, and your baby doing now?
We are so very pleased to say that Kyliana recently celebrated her second birthday. As of last month, she is 10 months Cholangitis free and 6 months hospital free!!!
She is the happiest, sweetest little girl, very smart, independent, caring and super-duper sassy. Haha. She’s the light of our lives and we are blessed everyday we get to spend with her. She continues to amaze us with all the new things she learns everyday. We’re learning the ABC’s, counting, colours, shapes and so much more.
Her favourite things include the slide at the park, the wiggles, sesame street, colouring, having tea parties making mommy and daddy tea and cookies, her big, big family & dancing!!
5. What advice do you have for a new preemie parent?
Never give up!! Not that it is even an option, but just know that there is a light at the end of the tunnel. Even on the darkest days (and there will be many) there’s always something good in that day. Even if you don’t see it.
Accept the offers for help. Don’t feel guilty about getting some rest away from baby, try to eat properly as best as you can. This is something I did not do, we ate dinners out of the vending machine some days, and it takes a toll.
And the biggest piece of advice I can offer is that you are the ONLY advocate for your child’s health. If you have questions, ASK them. If you don’t understand something, have someone clarify, if you don’t agree, speak up. Come up with a plan that suits both your baby, the doctors and yourselves. They are amazing people and are there to work with you. I also wish I wasn’t so anxious and in a hurry to go home with her. This not only caused unnecessary stress & complaining, it did nothing to speed up the process.
I can’t say ‘enjoy’ it, but don’t make it worse than it is. Just live each day with the hopes that it will be better than the last, and keep your head up. If we can take anything away from our NICU experience, it is that even on the days we felt we had no strength, watching Kyliana show the world her courage and strength, fed us the amount we needed to carry on.
So here’s to all those amazing babies, parents, hospitals, doctors, nurses, Ronald McDonald houses, families, friends, and the list could go on forever.. We could have never gotten through this all without each and every person who was there for us. From a simple message, to the ones who prayed for us, to raising money for us, hugging us, bringing us meals, giving us a place to rest our heads, visiting, calling, and to my Alex for being my absolute rock through it all. When I felt like I couldn’t take any more, you constantly brought me back down and reminded me what we were fighting for. I love you. Always.
Thank you so much to Heather for sharing her story and sweet Kyliana with us. I’m so happy that she’s doing well now, and can’t wait to hear more updates. She is such a strong little girl, and I know we’ll see some amazing things from her.
Please leave any questions or supportive comments for Heather and her family below.
