There was no question after Isabelle’s first few weeks at the hospital that we were in the market for some feeding issues. Not that we were looking for them, I had hoped that I would be able to nurse and have that bonding post-op. Nope. She didn’t have the stamina to nurse for the amount of time she needed to in order to get calories. The rate she burned calories astounded me. She would lose grams when I was sure she was going to gain. She kept vomiting. She had no interest in the bottle after 4 minutes. I would weigh her in the morning, hoping the numbers would go up. When they did I was elated- this means we’re ok! When they didn’t, I would panic and go over every intake, add up the volume, and make myself crazy.
After four months of ‘failure to thrive’ and her inability to keep food down consistently, we were referred to Dr. Jenifer Lightdale. Isabelle’s NG tube had been pulled out so many times we had to come up with a different solution that was less invasive to her nose. She needed to start gaining weight so we could make it to her Glenn. At the pace she was going, it would be months and we didn’t have that long to wait.
Dr. Lightdale examined her, asked us questions and halfway through the visit, Izzie got hungry. I had some breastmilk and gave her a bottle. Dr. Lightdale was interested in seeing how she ate. After watching Isabelle for a few minutes, she told us her thoughts. First thought: Isabelle had learned that she satisfied her hunger with the first round of drinking. After that, she didn’t need to eat anymore. She had trained herself to eat enough to be satisfied, and by four months, it is too late to try to teach them how to suck a whole bottle. Second thought: NG tube had to go. She recommended a G tube such as the PEG. Third and final thought: moments after Izzie ate, she began to cry and pulled her legs up. I couldn’t keep her snuggled to my shoulder as she writhed in obvious pain. The verdict: she was sensitive to certain proteins in the breast milk such as soy, eggs and dairy. WHAT? Not only will my daughter never drink a whole bottle but she needs a feeding tube placed in her stomach and I can’t have dairy, eggs, or soy until further notice.
I had to give up all of those things if I wanted to continue pumping. I had already pumped quite a stash of milk was devastated that we couldn’t use what I so lovingly squeezed out of my body. Four times a day. Sometimes more. Dr. Lightdale suggested we change her formula to a hypoallergenic powder called Elecare (aka The Most Disgusting Stuff on Earth). It would take about wo weeks for my milk to be completely hypoallergenic but we could still give her what I was producing at that time. I cried all the way home.
She called me on my cell and just wanted to make sure I was okay. She told me she knew her instructions were overwhelming. She knew it was going to be hard to give up all of those things, and appreciated my efforts. She had given me suggestions on what to eat before we left the office and she asked me if I was okay. Dr. Lightdale was very confident this would work. She couldn’t have been more right.
When Isabelle pulled her NG out for the last time in December, we decided that after she was treated for dehydration, we would schedule her PEG placement. Twelve hours after being admitted I was told I could give her just plain breast milk in case her stomach couldn’t tolerate the 28 calorie formula we had her at. I gave her a bottle with breast milk in it. She drank the whole thing. I was stunned. She did it again 4 hours later, this time with Dr. Lightdale sitting next to me. Dr. Lightdale was delighted. “She proved me wrong, she can drink a whole bottle! Let’s see how tonight goes and we will talk tomorrow. Isabelle took all of her required intake that night by mouth. I couldn’t wait to see how much she had gained the next morning.
She lost 30 grams. I was speechless. In true interstage fashion, she ate a lot and it burned off faster than her body could store it away. We scheduled surgery for that Thursday and began mapping out NPO protocol. After months of trying to get her to eat my daughter was getting a feeding tube. Did I do everything I could for her? Was this a failure on my part? Should we have held out just a little longer? Looking at her today I know what the answer is.
Izzie gained steadily in preparation for the Stage 2 surgery and although she threw up more often than not, we were able to fatten her up enough. I stayed on the diet and found that I liked the coconut butter spreads and my body appreciated the non-dairy lifestyle I had adopted. I felt great and just had way too much peanut butter. All natural peanut butter, since the commercial brands have soy in them. By the way, soy is in EVERYTHING. From bread, to spaghetti sauce. Check the labels!
The irony of the feeding tube is that it gave us more freedom. We were free from the nightmare of interstage weight gain issues. Free from measuring everything in calories such as “That cry lasted a good five minutes so that was 80 calories just wasted.” Free from worrying every day. Well, worrying about her weight gain anyway. We were free to give her solids and after her glenn we were free to give her just breast milk. No more Elecare, no more Polycose- just milk. And she started to drink from bottles again. We stopped using the tube for feeding in March. It was taken out in August.
Our daughter is a chunky, lovey, baby who loves food and signs for ‘eat’ all the time. We are trying to get her say “food” but hey- at least we know what she wants part of the time! I was able to get off the diet after she was 10 months old and showed no sign of distress with the Before Diet milk. She is allergic to eggs right now, and there is a chance she will outgrow that eventually. When I think of how remarkable Isabelle is, I think of everyone responsible for helping her where she is right now and Dr. Lightdale is in the top three on my list of BCH’s AMAZING DOCTORS.