A small victory

10 Nov

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.




11 Responses to “A small victory”

  1. Alexandra November 10, 2011 at 6:15 PM #

    Yea ! Good for you for sticking to your guns.

  2. marie herzog November 10, 2011 at 6:51 PM #

    She looks so adorable. I just want to squeeze those little feet. Like you said, there is a lot more to nursing than nutrition. Lauren and you both need that intimate comforting. Love Marie

    • ann morfitt November 11, 2011 at 12:36 AM #


  3. Liliane Zarifa-Théberge November 11, 2011 at 2:41 AM #

    Bravo Amanda. That’s the best way for you and for Lauren. Your aunt Leila.

    • D Fitz November 11, 2011 at 4:49 AM #

      Amanda, there’s so much more to a mother’s intuition than will ever be explained. You felt what the right thing was to do and your instincts proved true. You are such a strong person and together with Stephen, in spite of all you’re going through you were able to still find the strength to stand up for what you knew, in your gut, was right and together you made a critically important decision, that was the right one. Medicine is great and good doctors are wonderful but………no one knows your baby like you do. Love Deirdre

  4. Liz Taylor Rabishaw November 11, 2011 at 12:27 PM #

    With eyes blurring / lump forming in throat I read you had been told to stop nursing Lauren. Didn’t realize I was also holding my breath until the words “I would continue to nurse Lauren…..” and then I audibly exhaled. The two of you are large in Lauren’s small world, and this “small victory” is huge within it. Breathe in / breathe out / hold your beautiful, beautiful girl. From a friend of a friend of a friend adding prayers to the circle around you all.

  5. Shannon Sayeau November 14, 2011 at 11:40 AM #

    Thoughts and Prayers to the three of you. What a beautiful family you are. I am so happy that you are back home. That in itself is a little victory. Much love, Shannon

  6. Rachel November 14, 2011 at 10:03 PM #

    I’m so proud of you, Amanda. This was a BIG, BIG victory for your little girl and I’m very impressed you had the courage and tenacity to fight for it. You are both wonderful parents and I know you are doing everything you can to make sure Lauren comes first.
    Love to you both,

  7. Janet Loughheed November 23, 2011 at 12:54 AM #

    You are all in my prayers, day after day. I am studying myelin in my physiology course and every day I think of you all.

    Love and peace upon you all,
    Aunt Janet

  8. Cheryl Scott March 14, 2012 at 12:30 AM #

    I am a practising Speech Pathologist in Tasmania, Australia. Strangely enough, I found your site while looking for images of Video Fluoro Swallow studies. Your little girl caught my eye amongst the Xrays because she’s so darn cute. What a poppet!

    I would never normally comment on a personal blog like yours, but was moved to do so because I disagreed with the advice you received from your OT about stopping oral feeding purely on the basis of an absent gag reflex – and I am very pleased that you were able to continue feeding her. I hope that she continues to do well in the face of this awful medical condition.

    Here in Australia, Speech Pathologists are the professionals who advise on swallowing difficulties. It is now widely accepted that the presence (or absence) of a gag reflex is NOT an indicator of swallowing safety or otherwise. The fact that your daughter was managing to breast feed without choking – AND that her chest was clear was FAR more significant. I’m very glad you were able to persevere with feeds with the support of your doctor.

    I know that this post is an old one and I don’t know what happened subsequently – or how she is getting on now four months later, but I wish you and your daughter all the best. She’s a lucky little girl to have parents who are savouring every moment.

    Best wishes from the other side of the planet

    Cheryl Scott

    • lifewithlol April 3, 2012 at 11:24 AM #

      Thank you Cheryl! I appreciate your comment, I wish that we had someone like you in the hospital at the time. It was very difficult to bring our thriving daughter in and then be told that breastfeeding her was dangerous. Other then her inability to sit at the time, she had been healthy! I needed to keep that connection with her and ended up feeding with ng tube and breastfeeding, I allowed her to wean herself off when she was ready.

      Since this post, she now has a Gtube, it makes sense for her now since her ability to swallow will get very difficult down the road and the ng tube comes with its own challenges.

      Thank you for your comment and well wishes.

      Amanda and Lauren

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