After following our Dr's advice and taking a week off of Cyproheptadine, Lochlan is back to square one. He gags, retched, fusses, and vomits all day and night despite being on the medication that once helped him. We also gave a hypoallergenic formula a try with no luck. Lochlan does best on breast milk, but I don't make enough, and now that he is 11 months old, it is not nutritionally sufficient. He has lost weight since visiting Boston.
My obsession with Lochlan's nutrition hit a new high. I have been glued to feeding tube Facebook pages for over a week. It began as a great place to receive information from people that have lots of experience, but ultimately, I am discouraged by the massive volume of children with incurable GI disorders. I am depressed by the amount of children that suffer and the lack of support from the medical community. People are denied over and over for specialized formulas and basic supplies, but have no guidance for a blenderized diet or tube weening. There are people in the Midwest who's babies will go hungry if they are hit by a tornado because they don't have enough supplies to last a few days or electricity to charge the pump batteries. It makes me worry about how we will refrigerate breast milk, keep ice packs and charge Lochlan's pump this summer if we are hit by a storm.
After doing some research, I thought that maybe a blenderized diet would help Lochlan. The only basic recipe that didn't contain any allergens came from Seattle Children's Hospital. I was exhausted after work on Sunday, but I came home to make it. I was really hoping that it would help. We gave Lochlan two full feeds of breast milk and then started the homemade formula on Monday afternoon. Lochlan didn't vomit at all for the two breast milk feeds, but then began violently vomiting last night. It was a rough night to say the least. This morning was equally as rough. After getting everyone ready and pumping, I put Lochlan into the car seat to go to the gym. He vomited all over his car seat and the third outfit of the day. While I was trying to clean the mess up, Declan decided to act up. That was the moment that I called my mommy, and gave up. My mother rescued me, and by the time she made it over, the boys were back to being angels. She must think I am nuts.
As I write this, my house is destroyed and I am still in the clothes that I had intended to wear to the gym. My husband is home from work cooking dinner and simultaneously cleaning, the boys are playing nicely, and I look like the slacker of the year. There are days when I can only manage to pump every three hours, operate and clean Lochlan's feeding pump, get Lochlan to take naps, clean up vomit and milk spills, feed and play with Declan, and nothing else. Everyone seems to think that I should either exercise more or see a therapist to feel better. I haven't even had the time to get my teeth cleaned.
Life is overwhelming right now. I really want to be positive and gracious for all of the blessings in my life, but gratitude is scary. I know that the more I cherish life, it can be heart-breaking when life gets harder than it already is. Lochlan's prognosis gaurantees rough roads ahead. I'm still waiting for the guilt of baring a child with birth defects to subside, and hearing that God gave Lochlan to me for a reason, does not help.
