Hershey

I know you all are dying to hear about our time at Hershey. Sorry I've been remiss in updating, I'm not sure where the time goes....

We went to the Hershey Feeding Clinic on March 16th. Our wonderful OT, Allie, was great enough to come along (on her day off, mind you) to be an extra set of ears. The drive to Hershey Medical Center was pleasant, through the farms of Amish country. It took us a little over an hour, which is about how long it takes to get to Philadelphia from here. However, instead of sitting in a city traffic jam swearing at other drivers, we admired sprawling farmlands.

We met with the Feeding Center director, a Speech Pathologist, and a Nutritionist. They took a lengthy history of Maggie and then observed me feeding her. They all agree that some of Maggie's problem is behavioral, but alot of the unresolved medical issues with her vomiting are slowing down her progress. The nutritionist adjusted her calories (we're up to 24 calorie formula) and volume (up to 6 ounces per feed), and they were able to get us an appointment to see the GI specialist as well. I asked Dr. Williams about the GTube. He said that while he does think Maggie will be able to make progress with the NGTube still in place, it would actually be EASIER to get her off of the GTube. I was surprised by this, but the explanation makes alot of sense. If we take away the sensory component of the NGTube-- gagging, irritation, tape, reinsertions-- perhaps Maggie will find eating more enjoyable. We agreed that we will wait until after her birthday to make the final decision, but that the proverbial writing is on the wall.

I am alternately resigned and terrified. Maggie is so much more aware of her surroundings and absolutely recognizes the tube for it's unpleasantness. She is such a happy baby, but when I lay her down on the changing table to reinsert the tube, her whole face crumbles. It breaks my heart. If her feeding issues aren't going to be 100% resolved soon (and the likelihood of this is slim), getting a GTube that she is otherwise unaware of might be best for all of us. I just can't really believe it's come to this.

One of the best parts about the Feeding Center appointment was that I left there with a clear plan. Each of the providers: Dr. Williams, Speech, and Nutrition, gave me a written plan. Actually, they gave me multiple copies of the plan! I have phone numbers to contact them with. I have email addresses to send questions to. I left with a clear understanding of what's happening and what's coming next. I finally feel like someone is taking charge of this, and I can finally LET them. I have been driving this bus for too long, and I'm tired. I just wanted someone to take some of the burden from me. I am thankful to finally feel like I have guidance.

On Thursday, we went back out to Hershey to meet with the GI Specialist. I had been unhappy with our GI from CHOP for a while, and after such a positive experience with Hershey, I was looking forward to a second opinion. Our CHOP GI had recently restarted Maggie's reflux medications-- first Zantac, and then when that wasn't working, back to Prilosec. Unfortunately for our Peanut Face, these medications make her sicker. (As if I thought that was even possible!) On medications, she vomits 10x more than off the meds. But the CHOP GI didn't really seem to believe me. That was the first item on the agenda with the new GI. He listened to what I had to say, thought for a moment and said "Well, let's stop the meds then." Now, LOGIC is something I can get behind!! Dr. Field explained that the medications will NOT stop Maggie from having reflux or stop the vomiting. The medications neutralize the acid in Maggie's stomach, so that her esophagus doesn't get irritated. When we had the endoscopy, there was very little evidence of any irritation. Reflux usually resolves as the baby gets older-- between 12 and 18 months of age. So we're almost there. But giving her medications that increase her vomiting makes ZERO sense. Dr. Field thinks that much of Maggie's problem is motility related. We're stuffing her full of formula to help her gain weight, but it's not moving along in her system. If we can take care of the constipation, then her reflux may improve. We talked about Maggie's upper GI series from a while back, and how I was told that she did NOT have delayed gastric emptying. Dr. Field asked how much volume Maggie was given during the test. When I told him it was only an ounce and half, he said that he's not convinced she doesn't have some delayed motility. We are asking her system to process 6 ounces at a time-- WAY more than was given during the testing. Based on her symptoms, he felt she does have motility issues. So we left there with a prescription for some Lactulose, that will hopefully help Maggie overcome this longstanding constipation issue.

We will follow up with the Feeding Center and GI in about a month. In the meantime, we'll keep working with OT and Speech with her feedings and motor skills.

Otherwise, Magoo is her happy little self. She is becoming more and more verbal in the last week or so. Lots of P's, B's, G's, M's, and D's! I walk her around, saying "Mamamamamama!" in the hopes it will be her first word. (I know it's usually Dada, but a Mommy can hope, right?) She laughs all the time, and has started to "play" a bit with Ben. She'll reach out for me when she sees me, and if she's tired of being in her swing, she'll whine and let me know. When I go to pick her up and say "Upie Upie!", she grins that toothless smile and lifts her arms. She is such a joy. Looking at her now, despite the feeding difficulties, it's hard to believe where she started.

~Sara