Back to the Waiting Game

Lucy's Gap Study results were reviewed today and, unfortunately, they were not what we were hoping for. We are back to the waiting game - waiting for her to grow, waiting for the gap between the esophagus and stomach to get bigger and generally driving ourselves crazy in the NICU for at least another 2 months.

Jason was able to go to Lucy's study with her - they took a field trip to Pediatric Radiology where she had dye put into her feeding tube to her stomach and then did an X-Ray to look at where her esophagus pouch ends and where her stomach begins. There is no magic gap for the surgery to be OK to try, but at a certain length, the surgeons consider it a "large gap" and too large to perform surgery on. From what we had read, anything over 2 cm was considered a large gap. In Lucy's case, her gap is currently 1.9 cm, or equal to 3 of her vertebrae. We do not exactly know how long it was when she was born, since it was originally attached to her trachea and there was no gap study done before hand.

The surgeon consulted with her colleagues in the department and they agreed that with the gap being that long and her VSD (Ventricular Septal Defect, a.k.a. hole in her heart), surgery at this point would be too risky. She said that the soonest she would re-evaluate would be in a month.

Bottom line, Lucy will be in the NICU for at least another 2 months, as she prepares for surgery and then recovers afterwards. While we are confident in the surgeons' opinions on Lucy's case, we cannot help but be aware of the other impacts to another month of waiting:

- Lucy losing her interest in her pacifier because of the tube that is constantly in her month, which will surely increase her recovery time as she relearns to suck and swallow

- Lucy continuing to cough and gag and hold her breath until she is literally blue in the face because she is overwhelmed with the secretions that her body cannot handle - quite possibly setting her up for a serious gag reflex, oral aversion and acid reflux when she is older

- Me spending 3 1/2 hours on the road driving to and from the hospital everyday

- Me taking a pay cut in order to work PT so that someone can be with Lucy every day

- Jason balancing the bulk of the home duties, working from both his office and remotely and dealing with travel and being away from Lucy and I

Needless to say, today was a pretty big blow to our positive outlooks and patience! So, while Jason graciously made fajitas and tried to cheer me up, I cried into my dinner plate until I felt better and then we both remembered to be thankful for the beautiful gift that is our little girl. I think the picture frame that we received from one of my co-workers sums up our thoughts tonight, "It is all worthwhile to see our baby smile..."