365 Days of being a Tubie!

A year ago today, we began the life of a tubey. I remember the day like it was yesterday, I remember the night before like it was yesterday. I didn't sleep. All I could think about was that the next time I closed my eyes, my baby would have a tube taped across her face. Some of my fears were irrational, others seem miniscule now. We procrastinated all morning. I needed to pack our bags, but Annabelle wanted to play dress-up, so we put on tiaras. The clock was ticking away and I refused to take a shower, so finally I pulled Annabelle into the shower with me so I could hold her close. I couldn't look away from her. I fought tears the entire day. Every time I would see her smile and her precious face, I died inside.

A huge part of my mommy soul died a year ago today. I spent so much invisible energy fighting the medical world to keep my daughter off a feeding tube. Nearly every hospitalization was a battle to keep that tube away from her face and tummy. I pleaded for help but conversations constantly circled back around to her nutrition. Just because she was diagnosed with Eosinophilic Esophaghitis, to me, didn't mean she MUST be placed on a feeding tube. She was stronger than that - she drank the elemental formula! She wasn't like other kids, she was so strong! Finally, I began to see thru the fog and recognize just how malnourished my daughter was becoming. Just because she was eating the formula didn't necessarily mean she was being nourished - I didn't understand that.

The drive to the King's Daughter's Hospital in Norfolk, VA was heart-wrenching. With every mile, I felt my heart shattering away. The moment we arrive back at home, our lives will be so different. It's like when you leave your house to have a baby.. you look around at all the walls and roads and daydream about how different your life will be when you are back again. That's exactly how I felt driving to Norfolk, only with less anticipation for a brighter future - I drove to Norfolk to meet the finish line of a battle I've lost, not won.

I was wrong in so many ways. I may have lost a battle I fought for my daughter, but I won my daughter back as a result. We have conquered and overcome so many battles since placing the NG tube, in many ways becoming a tubey has been far more difficult than I could have ever imagined, but there are more hidden blessings that I ever dreamed.

• Annabelle is finally nourished without any effort of her own
• We can sneak medications without ever waking her up at night/naps
• We can hydrate her when she needs fluids, without forcing her to consume them
• I am certain Annabelle has gotten adequate nutrition because we can monitor every drop
• She has energy to run and play when she's well
• Annabelle immediately began to grow, walk, laugh and LIVE when we placed the tube

Of all the fears I had about becoming a tubey, some of the most life-changing we've experienced, I never considered were on our horizon:

• We've lost friends because they don't understand our daughter
• We've lost friends and family because of our life and priorities. they don't understand
• Finding childcare or a babysitter is impossible. people don't understand
• We are judged in public constantly for "having our priorities all wrong when that baby is clearly SO sick - she shouldn't be shopping, she should be at home!". people don't understand
• Annabelle blames her 'tubey' for the reason she cannot do things like every other child. she doesn't understand

Then on the other hand, many of the initial fears have remained.. our biggest fear and fight was that if we placed Annabelle on a feeding tube, that she will never come off the tube. A year later, we've lost even more foods, our nutritional plan is still not solid and I've been told my numerous GI's that it's likely Annabelle will never come off of a feeding tube. Whether or not she will always be nutritionally dependent on the tube is one factor, the damage within her GI system and Nissen is another contributor for mandating the tube will remain. This reality was the driving factor behind our fight against the feeding tube, and we absolutely despise the same reality, a year later.

Our home has become flooded with feeding tube supplies.
We have a huge walk-in closet dedicated to feeding tube supplies alone. Every bathroom has a basket of supplies (syringes, venting tubes, feeding bags, blending bottles, formula, extensions and tape). Our kitchen is stocked with a secondary tubey storage. Both our vehicles have a bag of feeding tube supply and a G-tube emergency replacement kit. My purse ALWAYS contains an emergency tube replacement kit and Annabelle is never, ever further than 5 minutes from one. Both our families we frequent have tube feeding supply, formula and extension sets.

We've learned a lot. We have learned SO much, it's incredible. Throughout our journey with Annabelle and our mission to find our diagnosis, I have to say, navigating the feeding tube journey has been the largest learning curve for AK and I. Our hands have performed more procedures on our daughter than we ever care to admit.... and they still do. We change NG tubes, we change g-tubes, we hold her down to burn granulation tissue off her stomach, we apply steroid creams to infections. Our cars will forever carry the specific scent of stomach bile from all the times a tube has opened and drained Annabelle's entire stomach all over our car and herself. Nights are long; just this week alone, 3 out of the last 7 days we have spent the middle of the nights changing bed sheets, baths and panic because once again, the feeding tube has fed Annabelle's mattress and not Annabelle. Our life is chaotic. This is in no way a sympathy post, it's simply a reflection of our life during the last year. It's every bit of why I fought so hard against a feeding tube and it's our reality. Annabelle has undergone more pain, strength, accomplishments, hurdles and milestones than I ever dreamed she would during these last 365 days. I still hate our feeding tube, more than I did a year ago. But I am so grateful for what it does for our daughter. Annabelle is incredible. My God she's so amazing!! She smiles so big and floods the world with the life within her. She's being nourished, not perfectly, but she's alive and happy.




One year down. Not looking ahead, but reflecting back, 365 days are behind us, and wow, what a whirlwind they've been!