In April of 2020, the final addition to our family was born. When we moved to Yuma, AZ in 2018, we thought we were done having kids. We had our three; they were finally at ages where there wasn't the need for a stroller, we were almost out of diapers for our youngest, my husband and I could hang back while they played and walked during family outings, so even though I had wanted one more when we moved there (my husband was done at 3), after experiencing the "freedom" of being out of the baby stage with our youngest, I was finally okay with three.
If only I knew then, what I know now.
Our Smilin Rylyn changed...everything. But in the best way possible. However, when I first found out I was pregnant, I was not happy. I know, that sounds terrible, but I had finally accepted we had three kids, and we were good. I started working on myself. I lost ten pounds, I was working out every morning, I started teaching again at a school where I would see my boys every day. I was so upset when I found out I was pregnant, which in turn made me feel so guilty.
Right after Ry was born, she had to go to the NICU due to low oxygen levels and breathing difficulties. She was only in there for a few days before we were allowed to go home. Fast forward two months to her 2-month well baby check right before we left Yuma for San Diego and I found out she hadn't gained any weight from birth...not one ounce.
We were immediately referred to specialists at Rady's Children's Hospital in San Diego. She was diagnosed with laryngomalacia, which is a fancy way of saying her larynx is super floppy which disrupted the natural 'suck, swallow, breathe' rhythm that newborns have when they latch to feed. Add in low muscle tone and an extremely high palate, almost to the point of being cleft, she was only able to eat 2 ounces at a time. Come to find out she also has a severe lactose allergy and needed special formula. Any one of these things, on their own, would have been manageable, but she had a perfect storm of independent issues that when put together in one little newborn added to one major problem, she physically wasn't able to eat enough to gain weight. (The 6 photos below range from a few weeks-5 months old...she's the same size in all of them).
Remember the guilt I had about not being happy I was pregnant? Multiply that by 100 because I felt like I was being punished. I felt like her health issues were my fault, after all she did grow inside my body, so I must have done something different during this pregnancy than I did with my others. I wasn't happy about being pregnant and now my baby was suffering because of me. The thoughts you have as a new mother, or as a mother in general, do not always lean towards the rational, they are what they are.
At 5 months old, we were admitted to the hospital for over a week, running every test imaginable to get to the bottom of why she wasn't gaining weight. Good news, there was actually nothing wrong with her. Bad news, she still wasn't eating or gaining weight (this is where doctors explained her perfect storm of multiple "issues" that unfortunately added up to her not being able to eat sufficiently). So, we placed an NG tube through her nose into her stomach to feed her the calories she needed. Even after placing the tube and feeding her a high caloric formula every 3 hours round the clock, it took her 3 days...3 DAYS...to gain even an ounce. But it was a start.
In November, when she 7 months old, she had what doctors' thought was a seizure episode. They kept her for observation, and she followed up with a neurologist, but she was fine after.
Ironically enough, it was like something clicked after that episode she had, and she started getting chubbier, she was finally moving her arms and legs (all she did for the first 7 months was lay wherever we put her because any calories she got went to brain and organ function, her body was in survival mode for that period of time, but starting in November, everything changed. (From September to December...look at those cheeks!)
Fast forward to April of 2021 and her doctors all agreed that they couldn't find any physiological reason for her not to eat, so we ditched the tube and had a trial few days where she would either eat or we would have to place a G-tube directly into her stomach (the NG tube isn't meant for long term). I had to force feed her via a medicine syringe at first, but she finally realized it was fine and that's how we ate for the next almost year.
During that time, she had also been going to occupational therapy, physical therapy, and speech therapy (to help desensitize her mouth area). I was taking her to doctor appointments 3 to four times a week, sometimes down at Rady's near San Diego an hour away. But she was making progress. Slowly, she was gaining weight. When she was almost a year and a half, she finally started crawling. Soon after, she was zipping around the house in her walker and, right before she turned two, she took her first unassisted steps.
Eating has been a journey, to put it mildly. After a year with a syringe filled with formula, it was dairy free yogurt and peanut butter as a major source of her calories for dinner, PediaSure powder in dairy free milk for breakfast, pouches of pureed vegetables and fruits, anything soft essentially. I was counting calories on a daily basis to make sure she had what she needed. I was also feeding Ry her 'big' meal at night in the bathtub because she needed the distraction of water to let me feed her. If we tried sitting at the table, she wouldn't eat 1/4 of the food she needed but, in the tub, playing with water, she forgot I was feeding her and was able to finish the whole bowl every night.
She just turned 3 years old. My little Smilin Rylyn. Now, this feisty female will eat cereal (Lucky Charms are her favorite for the marshmallows), ZBars (chewy granola bars that she tends to tuck into the roof of her mouth and suck on instead of chew, but she's getting there), strawberries, bananas, Chex cinnamon cereal, Oreos, Pirate's Booty, a half a sandwich (it needs to be the heel of the loaf or a toasted piece of bread or the bread will just get stuck in the roof of her mouth) with a piece of lunch meat, and pasta and a meatball cut up into tiny, tiny pieces, and for the first time, she ate birthday cake. She still can't do super crunchy things like potato chips that will 'shatter' when she bites it, but she's made so much progress sometimes I can't wrap my head around it.
Sometimes, my fear of seeing her choke so many times in the past three years holds me back from trying new foods with her. The majority of the foods mentioned she started eating last week while my husband and I were away for a few days, so my mom and my MIL were watching the kids. I came back and she was an eating machine, which is wonderful. I still get scared. Food still gets stuck in her high palate because it really is like a reverse Grand Canyon in the roof of her mouth and she, despite my telling her repeatedly not to, does not stop putting food in her mouth until she gags so she has to be watched like a hawk when she does have food. But, she's eating.
Three years. These past three years have been the hardest years of my life. I mentioned taking a trip away with my husband and, despite one night away from our children when my husband came back from a deployment last year, it was my first time away from Ry since she was born, other than the two nights she spent in the NICU; 1,092 days and nights. For six months she slept in bed with me because her breathing caused me such anxiety. As she's gotten older, her neck strength has helped with her laryngomalacia and now you can only really tell when she exerts herself and is breathing hard or at night, when she snores like a freight train.
Ry and I have a unique bond. I'm her person, and she's mine. I love all my children, so very much. But Ry was dependent on me in a way that the other children never were. Watching her grow, watching her get stronger, watching her do things, like walk, that we weren't even sure she'd be able to do is an indescribable feeling. Not knowing what physical difficulties she'd have in life; every moment of progress was HUGE and was celebrated. Through everything she has endured, the poking, the prodding, the tests, the cameras up her nose and down her throat, the countless times she threw up because of the NG tube into her stomach, all of it, her personality is one of the best. She laughs, all the time. She plays with her siblings. She jokes around, she's feisty, she doesn't listen (but that's a whole other post) and she's just all around amazing.
My husband nicknamed her Smilin Rylyn when she was born, and she has certainly lived up to her name. I can only hope that, going forward in life, she faces every trial she comes across with the same tenacity and strength that she has displayed in her first three years on this Earth.
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