The beginning of the year was also the beginning of life for my daughter. She was precious, beautiful, and so sweet (as she still is), but she came with a challenge we’d never experienced: reflux (or Gastroesophagal Reflux Disease). She dropped in weight percentile, though she did keep gaining despite the constant spit up that she experienced day after day, feeding after feeding.
Sylvie dropped from the 30th percentile to the 4th. There weren’t major concerns from our pediatrician, who had deemed Sylvie a “happy spitter”. And said that her weight was still “following a trend”. But this just wasn’t true. Some of our naivete about reflux was starting to dissipate, and we called Sylvie’s doctor at home on a Saturday to ask for a prescription. Our little girl was so small and often miserable, and we were starting to feel that way too. Late in the month we stopped seeing the pediatrician every two weeks, because it accomplished nothing.
The silver lining was a visit from my husband’s parents. Nana helped so much with Sylvie, and Grandad with Kai (sometimes vice-versa) that we almost felt normal again. She literally did laundry for me every day! (An absolute must when dealing with reflux). I actually made a trip to Walmart and bought lip gloss. I’ll never forget the crazed joy mixed with fear of our baby getting hungry while I was away! We also watched the Olympics, and visited the local mall as a family! It was epic.
With the arrival of Spring, I learned how to get outside in our backyard with both kids (hint: carrier necessary!). We visited the farm twice, despite the challenges, plethora of clothing, burp cloths, and bibs, and the fact that we had to do laundry while we were there.
We had Sylvie see an allergist, to eliminate any possible problems with food I was eating. It was a great appointment, and we were glad to have someone who listened and had some good suggestions, and relieved that Sylvie wasn’t allergic to any foods.
Kai’s third birthday arrived, and we celebrated it at the farm with cake and some pretty good toys.
The month of Daddy’s birthday and warmer days came, and so did a lump on Sylvie’s head. We felt like it appeared out of nowhere, but looking at older photos revealed it had been present in March. At her checkup, I was eager to talk about it and the pediatrician belittled me. “I’m getting to that,” she said, as she went on with her spiel about how to calm a crying baby. (Hilarious stuff.) I had to remind her again at the end of the appointment, and after feeling it she said, “It’s bone.” Perhaps she was trying to be reassuring, but soon after leaving I thought of a million questions and problems with that statement. I called back and asked for a referral to get an image of it.
One x-ray later, our pediatrician’s nurse called me and literally read the radiology report to me. She explained that the doctor was “in her office.” I had her read it twice and wrote down what she said at a furious pace. Only after talking to a dear friend did I understand that the pediatrician is supposed to act as an interpreter between the radiologist and the patient (parents), and explain to me what the average person doesn’t have a clue about. So we fired our pediatrician, found a new one and set up an appointment for Sylvie’s next checkup, still with no answers.
Sylvie’s medicine isn’t covered by insurance, so we appealed, and lost. At the time we were paying $50/month for it. We continued to use it because we felt it improved her symptoms some, but she was still constantly spitting up and wearing bibs at all times, and not too happy about it.
The gorgeous spring weather brought more visits to my parent’s farm. This was the highlight of our weeks, as we got to venture outside, help with the kids, and a little bit of sympathy and understanding about what was going on. Most people don’t understand when you explain that your baby spits up.
Sylvie still emits rivers of curdled breastmilk down my shirt and hers quite often. Just so we’re clear. Doing daily chores like laundry, cleaning, and cooking feels almost impossible, but somehow we all get fed. We knew that Sylvie was the right age to begin losing her reflux symptoms, but there was still no end in sight.
Daddy and Kai built new forts almost every night. We had a wonderful father’s day, with time around the house, time at a park, and a visit to the farm. There’s nothing more beautiful than the Iowa countryside at sunset. My cell phone camera in a moving car does not do it justice.
We started getting serious about buying a different house, and had lots of talks about where we may want to live. We even put our house on the market and made an offer on another one. It wasn’t meant to be, though, and we decided to stay put until we had more guidance from God.
The highlight of this month may have been our family trip to the zoo. We were determined and it ended up being a great trip! The zoo in Des Moines is so perfect for little ones like ours.
My sister and her family visited my parents, and we had a fantastic time. My Texas relatives visited too, and it was great to see them again, just like old times (with breaks for breastfeeding).
In comparison to the last seven months, August was pretty incredible. Kai had probably the best day of his life when daddy let him drive grandpa’s John Deere tractor. For real! (Don’t worry, we have since purchased a helmet.) We went on a little boating trip with the grandparents. Nana and Granddad visited and we had a fantastic time, including two visits to the Iowa State Fair. This was when we discovered Sylvie has red hair! (We got lots of sweet comments from passersby.)
But the best thing about August was that it brought relief for Sylvie. I found myself doing laundry every other day at times, and the stack of swaddling blankets that we used as burp cloths were often left unused. I stopped including bibs as part of Sylvie’s daily outfits. It dawned on us that her reflux was healing or responding to medicine. It gave us a lot more freedom. I took Kai and Sylvie to the local park, during a weekday, by myself!
Kai started preschool on September 6. It gave Sylvie and I some time to ourselves, and Kai a change of pace. I was able to do things like take care of the house AND develop a little bit of a hobby. I started learning about aromatherapy, with an eye toward becoming a certified aromatherapist someday.
Sylvie learned to crawl! She has always hit her milestones right on time. Ry and I started getting a bit more concerned about the lump on her head, which appeared to be slightly larger. We decided to seek more answers with our pediatrician at her next well visit.
We also had a great time at the local pioneer farm for their harvest festival.
I went with Kai to a pumpkin patch with his preschool class while Sylvie stayed home with grandma. We had some great visits to the grandparent’s farm this month too. The tree in our backyard erupted in a show of orange and red colors. And we had a lot of fun at Halloween, trick or treating around the neighborhood with Kai while my parents handed out candy and watched Sylvie at our house.
It was about this time that we discovered Sylvie did not tolerate table foods. She needed purees, or she’d choke and vomit right there at the table.
Sylvie had her 9 month checkup, which included a low-radiation x-ray of the lump on her head. It was at this visit that the doctor mentioned having it removed, but I thought that sounded extreme. At that point I was resigned to the idea that this lump would always be part of her.
The x-ray confirmed that the lump was not bone. After talking it over with Ry, we decided to get a referral to someone who could give us an accurate diagnosis. Just a couple of days after we asked our pediatrician, I got a call from scheduling at Blank’s Children’s Hospital. The pediatric diagnostic specialist was available to see Sylvie the VERY NEXT DAY. So, after a little bit of panic and a lot of phone calls, we were all set.
You probably know how this visit went. The doctor told us that the only way to accurately diagnose the lump was to have either a CAT scan done or to have it surgically removed. The CAT scan would expose Sylvie to a high amount of unnecessary radiation. A biopsy would leave a scar, and with such a visible area it’s better to have it completely removed. After a very diplomatic discussion, I asked him to tell me what his recommendation was, to tell me what he would do in our position. And he said remove it. Then I asked him when, and before I could even get out my full question about what the right age would be, he said, “I’d take it out NOW.”
Of course, he wasn’t really yelling at us, but there was an urgency to his statement that made it forever echo in my mind every time I thought of it. (“take it out NOW now now now”) We finished off the appointment with blood work and then left for Panera’s. Because sometimes you just need soup.
We all got sick this month, starting with a horrible cough from Kai. Sylvie and I tested positive for strep throat and the whole family went on antibiotics. (I have a deep personal hatred for antibiotics.) I lost my voice for three days and spent a lot of time with Sylvie in a steamy bathroom.
We had a pre-op consultation with a pediatric surgeon, and he was amazing. He told us what she had, and that he removes these as often as once a week. He prepared us for what the surgery would be like, answered all of our questions, and just like that, scheduled the surgery for the following week.
I kept Kai out of preschool for that week to keep away any germs, and got my mom to babysit, and before I knew it, November 17th had arrived. We were really pampered at the children’s hospital. There was a dedicated social worker whose entire job consisted of tending to parents and playing with kids before their surgery. She gave Sylvie a strawberry-scented mask to play with so she’d be a little familiar with it when it was time for anesthesia. We had the best anesthesiologist ever, who talked with me and addressed my concerns (while daddy took Sylvie for a ride in a toy car) and was so caring I almost felt at risk of tearing up. My main concern about the surgery, after all, was the use of anesthesia. But before I knew it, she was driving her way down the hall and we found ourselves in the waiting room, checking the electronic board for updates on the progression of her surgery. It was, of course, successful and the cyst appeared exactly as expected (the lab tested it and confirmed it was benign). They handed my daughter back to me in the same pajamas she was wearing beforehand–she was never changed into hospital garb.
We had a lovely Thanksgiving with grandma, grandpa, and my brother.
The entire family got sick again at the end of November and beginning of December, and I lost my voice for 5 days this time. We discovered that when Sylvie has mucus draining in the back of her throat (sorry, grossness) her gag reflex is triggered, and we were dealing with the occasional choking-induced vomit as well as her cold symptoms. It was so bad Ry an I started discussing taking Kai out of preschool. We weighed the pros and cons, and in the end, removing him from preschool felt like the right choice for us. The main factor was a lack-of-policy about coughs and colds, as well as administrative issues, and social aspects just not clicking for him or me (with other moms). Kai approved of the idea with a smile. Since he’s only three, we’re waiting for next year to enroll him again.
Sylvie’s gag reflex was starting to create major issues. She began to refuse purees, but would throw up on chunks of food (like mushy banana, sweet potato, etc.), so she wasn’t eating much at all, and while I had the safety net of breastfeeding, she needed more and was hungry and upset. We had the number of an occupational therapist on hand but decided to wait a little bit longer before calling. After some agonizing weeks and experimenting with Puffs, we transitioned her to Cheerios, and that seemed to teach her to swallow without issues. She now loves mealtime! It’s been a long time (for her!) since she’s thrown up. I introduced her to a cup, and she surprised me by beginning to refuse to nurse. I’d call it self-weaning, but I did encourage it a little, but never denying her breast milk when she requested it. She weaned very quickly, going to one feeding per day overnight, and today she’s not feeding at all. I love how she quizzically looked at me and then turned away when I offered.
We had an amazing Christmas, opening presents as a family of four in our home, then having dinner with my younger sister and brother. Before that, we attended a Christmas Eve service, kids included, without causing any major disruptions! It was the first year Kai really “got” Santa, and it was so much fun to witness.
Today my daughter is one year old, and it has been quite a ride! She is darling, sweet, a teensy bit sassy, and is really coming into her own. I can’t wait to see what 2017 holds for us. Ry and I are in the process of making a very big decision about schools and where to live, Sylvie is weaned and eating well, Kai is growing and ready to become a farmer. This may have been a Year of Sylvie, but I think 2017 will be the year we really get a feel for our family of four and take some deep breaths. I hope you have a lot to look forward to in the new year too!