March 26, 2017 is the day that forever changed my life. I was 28 weeks pregnant with fraternal twin boys and woke up that morning with some unexplained pain. I tried to convince myself that everything was fine, but as the pain continued, I decided to call the doctor. An hour later, I was at the hospital being told my pain was contractions, and they were going to do everything they could to keep the twins in for as long as possible. Unfortunately, I had to have an emergency C-section a few hours later. At 3:55 p.m., Lucas was born weighing 2 pounds 15 ounces and minutes later Benjamin was born weighing 2 pounds 8 ounces. We had no idea what to expect as first-time parents and were not prepared for how intense the neonatal intensive care unit (NICU) would be.
After he was diagnosed with cystic fibrosis, Lucas spent 95 long days in the NICU. What kept Lucas in the NICU wasn't his lungs, it was his feeding issues. He had been getting his nutrition for 2 ½ months from a nasogastric tube and when it came time for him to transition to bottle feeding, Lucas struggled. He lacked the endurance to drink from bottles, but he slowly built up his strength and we brought him home on June 28, 2017.
Lucas had challenges when it came time to transition from bottles to eating table food. He had developed aversions to food and struggled to grasp the concept of chewing and swallowing. Anything that was textured and not a puree caused him to gag and throw up, and I certainly wasn't helping by trying to get “just one more bite” in. This caused us so much stress and anxiety for almost two years. I became obsessed over what he was eating and how much he weighed because there was so much focus on meeting the body mass index (BMI) recommendation. He was just under the goal BMI until he turned 2 and then dropped a bit because of the change in the growth charts. Lucas was gaining weight consistently, just not as much as his CF team wanted to see. I would leave each clinic visit in tears as I was scared to lose him because he wasn't meeting the BMI recommendation. I was embarrassed that he was 1 ½ years old and was only eating pureed food and still drinking formula from a bottle.
We finally accepted that we needed help because Lucas wasn't progressing and the more I pushed him, the more he refused.
We already had early intervention services for physical therapy, and we decided to enlist the help of an occupational therapist (OT) to help Lucas progress with his eating. I thought that the OT would come for a few weeks and then we would be on our merry way to food town; but, in reality, we worked with the OT for almost a year.
What I didn't know was feeding therapy doesn't happen overnight and -- in fact -- it is a slow, gradual process.
We had to take a step back and get Lucas comfortable with touching food and getting messy. This was the complete opposite of what he was used to. I spent the first year of his life protecting him from germs and bacteria by not letting him put things in his mouth and kept his hands clean at all times, which only added to his distrust in food and textures. We spent several months on strengthening his chewing ability and working on tongue movement, which is an essential part of eating that I never realized. We would have him kiss foods that he initially refused just so he could get the feel and taste of them. We would put all different sorts of food on his tray for him to touch and get messy with even if that meant that everything would eventually end up on the ground.
Sometimes the OT would do sensory play prior to Lucas getting in his high chair to help him let his guard down. Slowly, we started introducing crunchy foods like crackers, chips, and veggie straws. We worked on the crunchy things for a few months and kept adding on different foods, one at a time. Lucas slowly began to trust more and more foods and started eating all his meats to the point of enjoyment.
All the hard work paid off in the end, but I really struggled mentally during this process. I lost sight of what was really important and couldn't see the light at the end of the tunnel. I focused so much on the BMI goal that I basically shut out everyone and took all his care upon myself.
I felt that I was failing as a mom, and I was the one causing him to not weigh enough. I tracked all food intake, counted calories and fat, and caused myself so much undue anxiety and stress.
I felt so isolated and alone and didn't see that my husband was trying so hard to support me, but -- because I was in so deep -- I wasn't able to recognize it. Being the person that he is, my husband wasn't going to give up on me. He helped me get in to see a therapist and psychiatrist for medication management and cognitive therapy. I am so grateful that he saw that I needed help and was there with me all the way. As Lucas continued to improve with meals, I started to relax a bit and started to involve Mike in Lucas's meals more. We started being a family again and enjoyed our mealtime together.
One of the hardest parts of having a child with CF is the isolation. It's such a rare disease that no one really understood what we were going through, especially CF weight challenges. With contact precautions, even if I was able to find another CF mom, we wouldn't be able to get together with our kids. I yearned for another CF mom who could relate to us.
I'm incredibly lucky to have found another CF mom whose son is three days younger than Lucas. We happened to meet on a CF mom blog group, traded phone numbers, and spent more than an hour on the phone the first time we talked. I was so happy to have found someone who knew exactly how I felt, and we bonded instantly. I don't have to explain myself to her; she already knows what I'm feeling. We talk about our CF challenges, what our wild child did that day, what funny sayings they repeat, and -- most important - we pick each other up on those days that are more bad than good. We have developed a relationship that most people would never understand. We've even traded poop pictures from our boys because talking poop is “normal” for us.
Lucas is now 3 ½ years old and is thriving. I chose my mental health over focusing so much on food not only for myself but for my family.
Lucas gets excited to eat and has really come to enjoy eating. He says things like, “I can't wait to eat that,” or, “Mommy that looks yummy!” He enjoys eating as a family and even helps clean up! Every once in a while, he has his moments of “food boycott,” but he's a toddler and that's what they do - he keeps us on our toes. The odds were stacked against him being born three months premature, but Lucas is a fighter. He's not going to let anything stop him.
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