The past week and a half has been the most stressful and painful that I have yet had to experience. In a matter of days we were swept away from our old lives and ushered into a complete nightmare. Any glimmers of hope being snuffed out one after another – you know things are getting really bad when you and your doctors are actually hoping that your daughter has a brain tumor because the alternative is so much worse.
One thing that I was able to hold on to was my continuing ability to comfort Lauren, of which nursing played a big role. Nursing provided a moment of comfort for both Lauren and I and although I had been trying for months to transition her to a bottle or solids I was happy that I had been unsuccessful, we could still share these moments together.
A week ago an occupational therapist had evaluated Lauren and discovered that she did not have a gag reflex. In a way this explained why Lauren had been so difficult to transition to solids. The OT mentioned that Lauren was probably refusing as a defense, preventing herself from chocking.
Though this news seemed positive it came with more news, that I was not ready for. The OT told me that I should discontinue nursing Lauren as it could be unsafe and she could aspirate and develop pneumonia. At the same time a nutritionist had come to push us to use a NG tube to feed Lauren, ensuring that she would get enough calories. Through tear filled eyes I asked if I could continue nursing and top off with the feeding tube, the OT kept saying no, that it wouldn’t be safe.
This was too much to take, Lauren had never showed signs of chocking while nursing before. More than ever this had become a really important way for me to comfort her and myself. Up until this point I had been in agreement with everything that had been suggested by the hospital, but this was breaking me. All I could think about was everything that Lauren was going through and I couldn’t bare to deny her this, especially if her life was going to be shortened.
Thankfully the Pediatric doctors and my husband were willing to take my side and use my compromise. I would continue to nurse Lauren and then top off with the feeding tube… At least until we could test her ability to swallow and know for sure.
Yesterday we had Lauren’s video fluoroscopy swallow test and she passed with flying colours. For now there is little risk to continue doing what I’m doing.
Below is a picture of our cutie strapped into to the chair for her Video fluoroscopy. It looks a lot more dramatic than it was, this test was easy in comparison to others.