This week has been full of appointments: GI on Tuesday, Feeding Therapist with Parker on Wednesday, and Developmental Therapy on Thursday. It's amazing how these "simple" appointments drive an entire day. Since when did ONE appointment change everything about how you function all day? At work I'd squeeze in meeting after meeting and go to my own appointments in between meetings! Now just one appointment with the boys alters nap times, feeding schedules, mommy's semi-workouts & shower attempts - from the time we get up to the time the boys go to bed. I find myself saying, "He's just not himself today because of that appointment". Nice excuse, right? So here's a summary of outcomes from our appointments:
GI on Tuesday: Parker gained weight and height, coming in at 16lbs, 60z & 27" long. Tyler again LOST weight and gained height, coming in at 17lbs, 6oz. & 28" long. So the boys are exactly one pound and one inch difference. Parker is doing well and with his feeding evaluation the next day, conversations didn't focus on Parker. No, Tyler became the focus on this trip. It wasn't a huge surprise that Tyler lost weight - his face looks thinner and his feeds are not up to par. He's only been taking an average of 115 cc's/day - he should be drinking about 550cc's (or more) by mouth to be on course. We started adding MCT oil back into his feeds, but it didn't make enough difference to help him maintain or gain weight.
G-TUBE: In talking to the GI, we decided that it's time to move to the G-tube. The inevitable has happened. A Gastrostomy Tube will be surgically placed directly into Tyler's stomach through the abdominal wall, allowing us to feed him similarly to how we do now, but through more permanent means. He will come out of surgery with tubing sticking out of his stomach, but after 2-3 months we will be able to switch it out for a Mic-Key Button (or a similar button system). Website http://www.mic-key.com/ provides a lot of information - what the button looks like and how it is maintained. The GI is referring us to the surgeon and we should have a consult in 3-4 weeks with surgery happening shortly thereafter. We're hoping for a July surgery date so Tyler can heal when John is home. We hope that by removing Tyler's NG tube, his oral aversion and reflux will dissipate. I've heard other micro-preemie moms talk about the NG causing irritation to the face and aggravating reflux, which is why they switched to a G-tube. My crazy hesitation with getting the GT stems from hearing about babies with G-tubes who are now 2, 3, 4+ years old who STILL have them! But I have to conclude that Tyler's feeding future isn't going to be more severe from the GT - this feeding journey is going to be...what it will be...ours to live and from which to learn. But we can help his reflux, oral aversion and aggravation by opting for the surgery and that makes sense. So my breathe will be held, but with excitement that Tyler's little face will no longer be filled with skin tears and red sores from taping and aggravation - and the trauma of having the NG replaced (by mommy and daddy) every week will be history. We'll let you know how it goes, of course!
Feeding Therapist: It was Parker's turn to visit the Feeding Therapist yesterday. He did really well taking his bottle in front of Camille, our therapist, and even took a biscuit and sucked on it for awhile. Camille was very happy with Parker's progress and has high hopes that he should be able to move into solids. We will be continuing food play but adding whipped cream from a can and various nectar drinks for taste. As soon as he gets used to the taste of the nectar, we'll add some duocal (extra calories) and give it to him in a bottle. We're also continuing with biter biscuits and will be trying to give him small pieces of soaked cake or bread. The key is to expose him to different tastes and textures with hope that his palette will expand and accept solids. So mommy's food play work is not done - ugh! As long as they progress, what does it matter, right?
Developmental Therapy: Both boys had their 45 minute therapy session with Danielle, their favorite therapist. Parker did VERY well and completed some more tasks on the assessment: claps hands, waves hi/goodbye, pushes a lever to make an animal pop up, and mimics certain sounds. He practiced crawling and tummy time and worked on finding hidden objects. Tyler was a little hyper today and I heard Danielle say, in her sweet voice, "Can Tyler sit for a while? Tyler, can you sit? Let's sit Tyler!" But his report was positive as he practiced "give me" concepts, overcoming obstacles to get to an object, responding to his name during an activity, imitating mouth movements and waving hi/goodbye. She agrees that Tyler has figured out how to ignore - if he's busy, maybe he'll glance at you, but won't give you more than that. Little stinker!
PT & OT: The boys had their physical therapy evaluations a couple of weeks ago but we haven't heard when services will begin. Danielle just told me that our contact at Alta Regional is gone, so no one has followed up on their services. And at Parker's feeding therapy yesterday, Camille mentioned that she's recommending an occupational therapy evaluation for the boys as well. I guess at PT, the boys will work on motor skills, coordination, etc. OT will work on sensory issues. Interesting that Camille asked about their sensory because I was just talking to John about how upset Parker gets when he hears loud noises - and was also mentioning how hyper Tyler has become lately. According to Camille, these may or may not be sensory issue related - a lot of NICU babies have "residual" effects of being poked and prodded & exposed to loud and continual noises. The ISSUE we might face in securing these services is the fact that Alta Regional is funded by Federal AND State government. I've already heard rumblings of services being cut because of our lovely budget "situation" here in CA. What timing! No more taxes? Well then, no more services! I hope we aren't the ones to suffer, but only time will tell!
Okay, now fun stuff - random pics below!