It’s taken a few days to write this because even though I’ve had time to process the idea of it, hearing it’s now our reality it’s harder to write this than I thought it would be.
For the past couple of months, Emma has been in a slow food regression. She is having a very difficult time eating purées and yogurts, and is only taking in anywhere from 0 to only 4 ounces a day. Drinking both pediasure and water in bottles has decreased significantly as well to now drinking an average of 16 ounces combined a day when she should be drinking 36 ounces or more. We’ve noticed her weight is at a plateau but the most significant thing that is noticeable is how she isn’t growing. She is still fitting in 12-18 month pants and even her physical therapist can tell when holding her she is losing muscle tone and fat. She is doing feeding therapy (along with OT, PT, Vision, and Speech) weekly but even with that she is still in a regression.
With all that said, along with our GI and feeding therapist, we have decided on having a g-tube placed for Emma to get the nutrition and hydration she needs. This will be an inpatient surgery and we will get to hang out in the hospital for a couple of days after to make sure we get the right combo of bottles and tube feeds down and are comfortable doing everything on our own at home. We are making this decision so that Emma doesn’t have a regression like last time that was 6 months of barely eating and not gaining a single ounce. Our surgery is scheduled for mid-December and in the meantime we will keep doing what we are doing and working with her to increase what she is taking in.
We know that there is a chance that she can come out of this regression on her own with time, but instead of sitting back and waiting until she gets worse, we are making the proactive decision to schedule surgery and change things if needed when the time comes. For me, it is more important that we have our ducks in a row and things scheduled because it is ALWAYS better to have something on the books then cancel it versus letting things get worse and have to wait even longer to get it scheduled in the first place.
Emma Has Two Moms 