Tubie Friends

You might have seen the picture of Zadie with her new Tubie Friend that I posted today.  I'm so excited about this teddy bear (who BJ thinks look likes Ted.  From the movie.)

Tubie Friends is a non profit organization that was started by two mothers of kids with feeding tubes.  They want to help other parents and kids who rely on feeding tubes.  All of the "Tubie Friend Surgeons" are volunteers.  All Tubie Friends asks of applicants is for $8 to cover shipping.  If you can't afford that, it's ok.  They'll still send you a Friend.  The stuffed animals (Zadie got a Build a Bear!) are funded by donations.

I sent Zadie's application in on Sunday night and her Friend was on our doorstep on Friday!  Talk about a quick turnaround, when they tell you that a typical turnaround time is 2-4 weeks.  And it just so happens that Beary (as Jonathan named him) arrived the day before Zadie's one year anniversary with her G tube.

Check out their site.  Spread the word if you know a kid with a feeding tube.  And donate a couple of bucks if you have it!

Jonathan, Zadie, and Beary

No news is good news...

I realized I haven't really written an update about Zadie recently.  The main reason is because she's doing really well and there haven't been any major developments.  She was sick, but seems to be just about over that by now.  She actually started getting sick the day before Jonathan's birthday and I ended up having to take her to the doctor the day of his birthday, which was also the day of his party.  Luckily, that didn't really put a damper on anything, and she got to enjoy the party a little bit.

She has been eating pretty well.  We offer her a sippy cup of milk at almost every feeding (other than when it is a nurse feeding her - the nurses need orders for EVERYTHING, and the written orders right now are to put everything through the tube) and she does really well.  There have been some meals where we haven't had to tube feed her at all!

She's also thisclose to walking.  She lets go of couches or tables for short times and has started bridging distances without holding onto something in between.  No real unassisted steps yet, though.  Soon, I'm sure!  She's doing so well that her occupational therapy through Early Intervention has been reduced to every other week instead of every week. We love her therapist, Patti, and we look forward to her bag of toys every week, but Zadie really doesn't need weekly OT.  We will continue with weekly speech therapy, though.  Zadie still can't make any noise around her trach, so we're working hard on signing with her, so that she has a way to communicate.  It's the cutest thing when she signs!

Zadie signing "more"

Community Supported Agriculture

Does anyone belong to a CSA?  We have considered joining in past years, but this year we finally did it when I found that Caldwell has one.  If you don't know what it is, you buy a share which is basically an investment in a local farm.  Every week throughout the summer and into the fall, we get a shipment of farm fresh produce.  Our produce comes from Starbrite Farm, which is a certified organic farm in Andover, NJ.

This week was our first shipment.  We ended up with two bags full of beautiful veggies.  I made a stir fry last night using garlic scapes (which are the flower stalks of garlic - they are kind of like scallions, but more garlicky and my hands still smell like them today after multiple hand washings), bok choy, mustard greens and radishes.  I never used three of those four ingredients before!

garlic scapes

I feel a little under the gun to use up all of this produce before it goes bad. But I'm very excited about it, and I'm glad that the kiddies are going to be getting organic veggies all summer!  And we're helping out a local farmer, which is always good.

Exclusively Pumping

It has been quiet around here, so I thought I'd write about something that is a big part of my life.  With Zadie's birthday came an anniversary for me.  I have been exclusively pumping breastmilk for Zadie for a full year.  I never really intended to be still doing it a year later.  I pumped for a short while with Jonathan, but didn't really know what I was doing and didn't seek out any support, so it didn't last long.

Since I had so much amniotic fluid while pregnant with Zadie, and they didn't know why, the doctor was concerned about a possible tracheoesophageal fistula (TEF).  Because of this, it was recommended that Zadie be bottle fed a small amount of water before any breastmilk was fed to her.  The thinking was that if there was a TEF, and fluid got into her lungs, it would be better that it be water and not milk.  Therefore, while we were waiting for Zadie to be brought to my room, they attempted to feed her some water from a bottle and it didn't go well and she was sent off to the NICU.

Since she wasn't able to drink from a bottle properly, it was clear that breastfeeding was not possible, at least not at that point.  Between Zadie's cleft palate and small chin, she couldn't form a seal with which to suck properly.  Even with specially made bottles which allowed us to squeeze milk into her mouth, she never was able to drink much from a bottle.  So, the first night of Zadie's life, I requested a pump from my nurse and the rest is history.

My faithful companion

The milk kept flowing, so I just kept pumping.  I rented the hospital pump because I didn't know how long I'd stick with it, and I was hoping that insurance would pay for something.  Insurance didn't pay for anything, and I still have the blasted hospital pump!  Somewhere along the way, I found a wonderful Facebook group for other moms like me who don't nurse directly, but pump exclusively.  Without those girls, I can't say for sure if I would have made it this long, still being able to provide 100% of Zadie's milk intake.

I had in my head one year as my goal.  I looked forward to "hanging up the horns."  I was counting down the months.  Then, it occurred to me - Zadie doesn't eat like a typical child, so she won't be just moving on to solids and cow's milk like a typical child.  That was when I started thinking about the blenderized diet.  I couldn't imagine switching to a formula after all these months of pumping.  That's also when I realized that I wouldn't be hanging up the horns when Zadie turned 1.

We're working on Zadie's eating, and she's actually doing really well.  I think the palate surgery made a huge difference in her ability to form a seal and she sucks pretty well and enthusiastically from a sippy cup.  In fact, over the past few days, there have been several meals where we didn't have to hook her up to the tube at all!  This is VERY exciting.

She has an appointment with the feeding clinic next week, and I'm going to make an appointment to meet with a nutritionist, but I see the end in sight to my pumping career.  I only pump twice a day for about a half hour each time now, but I'm looking forward to having an extra hour a day!