We have been very blessed with the overall health of Elizabeth. She has rarely been sick, hospitalized just a handful of time over the last 11 years and surgeries have been minimal. Most children with extreme disabilities such as Elizabeth find themselves in and out of doctor’s offices, hospitals and a long list of scheduled surgeries. As a toddler Elizabeth was hospitalized once for RSV and then again to have tubes put in her ears and her adenoids out. I have done this very same routine with the other children as I am sure you are thinking my child has been through that and does not have any special needs. Very early on it was often suggested that Elizabeth would benefit from a feeding tube of which Josh and I adamantly said no to.
Feeding Elizabeth was a full time job from the beginning. Once home from the hospital at 4 months of age we were on an hourly feeding schedule around the clock. Each feeding took about 30 minutes so just as you finished one it was time to start another. We would set alarms all around the room and take turns getting up to feed her. Children born as early as Elizabeth do not have the suck, swallow, breathe reflex so it must be taught to them. This is not an easy task as the outcome is more times than not aspiration. Considering how delicate preemies lungs are the last thing you want is for liquid to gather in the lungs which ultimately causes pneumonia. This reflex often develops around 36 weeks so on week 36 I remember quite vividly following Dr. Hall around that morning giving him every reason why I thought Elizabeth was ready for a bottle. Until now she had been fed by a tiny tube through her nose. There are two things my family and friends would tell you about me … one is that I am incredibly impatient, which I do believe I have spoken to quite frequently in pasts posts and that I am very, VERY persistent! So it was no surprise that Dr. Hall finally gave in and off I went to feed Elizabeth for the first time.
Elizabeth was still so very tiny weighing in at just a mere 2 pounds. Holding her was awkward because you had to hold her head a certain way, keeping her upright to keep the airways open and there were still so many tubes to contend with. The nurse handed me a tiny bottle, Dr. Hall carefully watching and critiquing my every move and with one little touch of that bottle to her lips she was off and running! I turned to look at Dr. Hall who nodded with approval and while I know he would never admit to it I am sure there was a smile as he turned to walk away. This became a major turning point for Elizabeth. And for me it meant I was able to hold her more which is all a mother wants to do with her newborn. Elizabeth’s weight began to increase, her feeding tube from her nose was removed and you could begin to see some true signs of growth.
For the first year we fed Elizabeth just as we had been told. We were able to introduce solids just as you would with any other baby. Elizabeth proved to have quite the appetite and was always more than willing to take in whatever we gave her. Josh and I were very pleased with her intake and growth but at the age of 2 we were met with the strong suggestion that Elizabeth would benefit greatly from a feeding tube. As I said before, it just was not an option for us. I had read enough to know that when you take away the oral stimulation from a child they begin to lose the ability to use their mouth. Not just in eating and drinking but also in language. Elizabeth was in speech therapy and we had many instruments and exercises to do with her in the evenings to encourage that stimulation. Elizabeth was not speaking yet and while we knew there was always that possibility she never would we weren’t ready to give that up just yet. I remember the pediatrician pulling out a chart and using the words “failure to thrive” over and over again. I repeatedly reminded the doctor where Elizabeth had started and how far she had come but he didn’t seem convinced that we were feeding her enough. We respectfully declined the feeding tube and went home and began a feeding regiment that would leave us spending the majority of the day and night feeding Elizabeth with the hope that the doctors would be pleased of our progress.
No such luck … it became a battle between physician and parent. The doctors would tell us that it wasn’t just about the weight gain but also about Elizabeth’s mental development. We were sent to nutritionists and specialists who continued to resort to the need for a feeding tube. There are very few things that Elizabeth can do or will ever be able to do. She will never play sports like her siblings; she will never go to college, get married or have a child. However, this little girl can eat!! And not only can she eat, she loves it! She loves the taste of food and is always open to trying new things. You can see it on her face when I sit down to feed her. This also is a time for Elizabeth and me to spend some one on one time together. Elizabeth has no use of her hands or arms so every bite of food and drink of juice is dependent on me. I often laugh and say it’s all her fault that my diet is always off! Mashed potatoes with heavy whipping cream and butter, rich pasta’s with cheese sauces and let’s not forget the quarts of ice cream we go through every week! One bite for you, one bite for mamma! So even with all of these calories the weight would just not stay on. I however had no problem in this area!
We had always said that when Elizabeth’s health was jeopardized we would put in the feeding tube, no questions asked. That time came about a year ago when I was met with the reality that Elizabeth was going to have a surgery that could ultimately take her life. It was just me, Elizabeth and our doctor. He was very blunt and said you have 2 options … 1. Schedule surgery today for a feeding tube or 2. She leaves with a feeding tube down her nose today. The second was not an option which meant I had no choice in this matter so surgery was scheduled for a week later. For 10 years I had faithfully fed my sweet Elizabeth and while I knew that God had a plan this one was just really hard to accept.