Fiona began vomiting on Wednesday, January 27th. That night I (Sara) went to bed worried with a strong suspicion that something was wrong with my little girl. The vomiting continued throughout the night and I called Fiona’s Pediatrician in the morning which led to her being seen that early afternoon. Fiona had X-rays completed to check for a possible structural reason for the vomiting as well as an urinalysis and blood draws. The X-rays, urinalysis and lab work failed to show any reason for Fiona’s symptom. We were given the option of going to the ER but were also told that it would be okay to go home and feed her small quantities of breastmilk (thinking this was some virus that would eventually run its course).
Within an hour of being at home we contacted the Pediatrician that Fiona had seen who suggested we go to Fairview Children’s Masonic, the vomiting was becoming more intense and Fiona’s body wasn’t able to hold down any amount of breastmilk. We arrived at the Emergency Room and additional blood was collected for labs. Additionally, Fiona was given an ultrasound. Nothing. Fiona was admitted for dehydration and was given IV fluids, again thinking this was a virus that would eventually run its course. Children’s Masonic hydrated Fiona and discharged her shortly thereafter, noting that diarrhea and a fever commonly follows vomiting. She would be fine.
Fiona and I took a nap upon returning home and once we awokend Fiona appeared to be dehydrated once again. Her eyes were sunken and her fontanel was sunk. After speaking to my sister we brought her to Children’s Hospital in St. Paul. Additional labs were drawn as well as an additional ultrasound. Again nothing. Fiona was down nearly a pound and a half from her petite weight of just under 11 pounds. Fiona was admitted to Children’s Hospital.
Children’s Hospital again gave Fiona IV fluids but slowly as her iron level was high and bringing it down too fast can cause brain damage. An Oncologist was then brought on board due to elevated labs. Thankfully, by the time the Oncologist had arrived her lab levels had stabilized and we were told with 99.9% belief that she does not have cancer.
Next, Fiona was referred to a GI Specialist. The GI Specialist stated that it was likely that Fiona’s villi in her intestines were blunted from the diarrhea and that they would need time to rest and repair. We were initially told that Fiona would need to go 24 hours NPO (nothing by mouth) but due to her continued diarrhea this continued for 98 hours. Those first 24 hours were the most awful for us as Fiona continued to display the rooting behavior that breastfed babies display. I will never forget the emotions tied to having to deny her the one thing that was able to provide comfort and nutrition to her. The thought of it still brings tears to my eyes. Fiona was started on TPN (nutrition) after 24 hours which sends a signal to her brain that she is satisfied.
After 98 hours NPO, Fiona was introduced to formula. We had the opportunity to feed Fiona a bottle but that was short lived. Fiona, like many babies did not like the taste of the formula and began refusing it. A NG tube was placed that evening. On the second day, the quantity of the formula was increased to 2 ounces. That evening I went to change her diaper and was broken to see that the diarrhea had returned. I cried as that sneaking suspicion returned, something more was wrong. The next morning it was discussed by her team of Doctors that Fiona would get some gut rest and that we would introduce the formula at a slower rate. If this didn’t work Fiona would have an endoscopy and a colonoscopy to try to see if there was something additional present.
Fiona’s team was receptive to focusing more on discovery rather than exploratory and agreed to have the endoscopy and colonoscopy completed the following morning....which brings us to the start of this Caring Bridge. It’s been such a long journey already. All we can do is hope and pray that we get an answer that allows for treatment of this awful situation.
Fiona update! My apologies for not getting this out here sooner as I know many of you have continued to keep Fiona in your thoughts and prayers and have been wondering about how she had been doing. Thank you.
Fiona has been symptom free since returning home! Her weight has continued to trend upwards and just last week at her 6 month appointment (how is this possible?!?!) we celebrated a jump from her being in the 4th percentile for weight to the 17th percentile for weight. She has been able to begin her journey on solid foods which she tolerates well. As a result of her status/progress her care team has given the okay to put off a previously scheduled follow up endoscopy.
Fiona has one last appointment to attend, to check her heart. There was one marker that came back on her genetic testing that showed that she may be at risk for a form of heart disease. This obviously is unrelated to her GI issues, and likely is not even a cause for concern but since it showed up they suggested following up just to make sure all is good.
And that’s all.....hopefully this is the end of these journal entries and the end of Fiona’s medical journey. Thank you to all of you, a million times over.
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