March 8th was Jillian's 2 year tubeaversary... ie: she has had a feeding tube for 2 years now. I remember my goal when she first got her tube was for it to be gone by her first birthday. It did not take long for us to realize that was an unrealistic goal. Now our motto is that "she will have it as long a she needs it." We have stopped making goals for when to get rid of her tube but instead we celebrate everything that she is able to enjoy.
She gets to go to school, have friends, play in the park, dance with her daddy, and be silly with mommy. Her tube makes this possible. I am currently listening to her play with her little people (she LOVES Little People) She has a Mickey "person" and is moving him all around and babbling up a storm. I have no idea what she is saying or thinking but she has some plan, that much is clear.
Before her tube she puked all the time and was very small. Her tube has given her the ability to grow and live.
So while two years ago this time I was scared and overwhelmed (still am somedays!) it is different now. Tube feeding is not so new.
I can fix her pump while doing 100 other things.
I can flush her line and give medications.
I can smell from across the room when her pump is leaking.
I can fill her pump at 2am while only half awake.
I can tape a tube like the best of them.
I have taught a nurse or two a thing about feeding tubes.
I can decorate her bag for fun events.
I can speak tube language (NG, NJ, GJ, NPO, rate, ml, fr, ect)
I can put a feeding tube in a stuffed animal.
All things I could not do two years ago when they gave us less then 24 hours of tube training and sent us home with a baby with an NG tube. I remember not being sure how to hold, bath, dress, ect her those first few days.The past two years we have learned a lot. We have had a trust in God a lot and trust in other people. We have cried many tears and danced for joy. It has been two crazy years... but best of all, we have gone though it all with Jillian. Her smile lights up my life. Her giggle makes me laugh. When she rubs my back as she gives me a hug I feel like it is all going to be alright. She is a wonderful gift and I am thankful for her tube. I am thankful for the person who invented it. I am thankful for the company that makes it. I am thankful for all of her doctors who take care of her. I am thankful for her therapists who work with her each week. I am thankful for the people that pray for us. I am thankful for the kind things that people have done. I am thankful for our friends who have held us while we cried and listened to us rant. I am thankful for each person along this journey.
I put together a collection of photos of Jillian since the new year! I love taking her picture and she is so darn cute! Here is the video. Enjoy!(If you can not see the video bellow click here to view it on youtube)
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