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!

Happy Birthday, Zadie!

I really can't believe a whole year has gone by since the day Zadie entered our lives.  It's been quite the crazy year.  I thought today, I'd share more of what we all went through that day.  Because while it was one of the best days of my life, it was also a pretty horrible day at times.

I had a scheduled C section for two reasons.  One reasons was because I had had a C with Jonathan and the other was the fact that I had so much fluid and they didn't know why.  Once they got me open, they were suctioning out all the fluid.  My level of fluid was amazing to everyone in the room, and they had to get a second suction canister.  My doctor told me I had 2 1/2 liters of fluid, which apparently is a lot.  Next, to get Zadie out, there was a lot of pulling and pushing.  She was out!  It's a girl!  I teared up a little when I heard those words.  Lots of hair, just like when Jonathan came out.  They brought her over to the exam table and the neonatologist examined her.  BJ went over to take pictures and I saw the doctor talking to him.  I heard "cleft palate" and I was trying to hear more.  I finally caught BJ's eye and asked, "is she ok?" He smiled and said, "she's fine!"  He told me that the doctor said she had a small cleft palate, but that it wasn't a huge concern.  There would be surgery down the line.  My OB further reassured me, saying she hadn't even seen it (not that she necessarily would).  If only anyone had any clue what we all had ahead of us!

Anyway, I got to hold her and she looked so much like Jonathan!

Next, I had to be closed up and Zadie went off to the nursery to be taken care of.  BJ went with her, and later came to see me in recovery.  When I was ready to go up to my room, they called for transport.  It took FOREVER.  It took so long that BJ actually went to the newborn nursery and "stole" Zadie away so that I could see her.  Later on that day, I would be SO happy that he did that.

I was finally taken up to my room on the 6th floor.  Since I had given birth to Jonathan in the same hospital, almost exactly three years earlier, they had changed a lot.  All maternity rooms were now private, there were no set visiting hours, and you could have as many visitors as you liked.  I was looking forward to these changes, since the day Jonathan was born, I had a roommate and they were strict about the two visitors at a time rule.  My room looked like a hotel suite.  My sister-in-law brought Jonathan later on in the afternoon, along with my niece and nephew, Stevi and Nicholas (future Godparents, although no one knew that at the time).  My father-in-law also came.  Meanwhile, we were all (im)patiently waiting for Zadie to be brought to the room.  I called my nurse several times asking where Zadie was.  Finally, I was told to call the newborn nursery to ask.

I gave birth to Zadie at 11 am.  At this point, it was probably around 5 pm.  I called the nursery and was put on hold.  When the nurse came back on the line, she said, "oh, they tried to feed her, and she didn't do well, so she's going to the NICU."  That was the beginning of one of the best days of my life being turned into one of the worst.  BJ was out of the room at the time and he came back in to see me sobbing on the phone.  I could just barely tell him that she was ok so that I didn't freak him out even more.  Even worse, BJ couldn't go see her immediately.  They had to set her up in the NICU, so he had to wait for about an hour.  He finally got to see her and reassured me that she was ok.

Meanwhile, a plastic surgeon from the craniofacial team at St. Barnabas had been called in by Zadie's pediatrician.  He examined her and was the one who diagnosed her with Pierre Robin Sequence.  He told us that she would have to stay until she learned to eat on her own.  I asked him how long he expected that to take, and he said maybe several days to a week.  A week!  Just the idea of her being in the hospital for a week killed me.  Again, if only we had known what we had ahead of us!

Since I had a C section, I couldn't get out of bed for 12 hours from the surgery, so that meant I had to wait until 11 pm.  I was able to be wheeled down in a wheelchair to see my little girl.  She was sleeping, but hooked up to all sorts of tubes and wires.  It was a relief to see her, but so sad to know I couldn't hold her or feed her or even sleep near her.  Unfortunately, the NICU is on the 3rd floor and I was on the 6th floor, so I was about as far away from her as I could have been.  And this is how I left Zadie on her first day of life.

I'm so grateful that tonight, I get to tuck her into her own crib right down the little hall from our bedroom and tomorrow morning I get to get her up and play with her and feed her.  Happy birthday, sweet baby girl.  You've come so far in the past year and I can only imagine what you'll accomplish in the next year!

Reminiscing...

I've been thinking a lot lately about what I was doing last year at this time.  I was very pregnant with Zadie, and I was blissfully unaware of what the future had in store for us!  I was going to the high risk group for weekly ultrasounds because of my abnormally high level of amniotic fluid, a condition called polyhydramnios, but none of those doctors figured out why it was there.  I googled that word a hundred million times, but never once stumbled upon Pierre Robin Sequence.  In retrospect, I had noticed Zadie's small chin in at least one of the ultrasound pictures, but I had no idea it could mean anything.  I had no idea it had a name, micrognathia, and that it would turn out to be the main struggle she would face.  So, ladies, pay attention and question everything.  But, don't make yourselves crazy because a lot of times, there's nothing you can do before the baby arrives, although preparation is always nice.  This is the last ultrasound I had before Zadie was born.  Notice the small chin!

Swallow Study!

Zadie had her long awaited swallow study today.  The last time she was admitted to the hospital with pneumonia, her pulmonologist suggested that perhaps she was aspirating and therefore should not eat by mouth until she was able to get a swallow study.  That is where they xray you while you eat to see where the food is going (and hopefully not into the lungs.)  Then, Zadie had her palate repair and had to recover from that and finally was cleared last week to get the study.

Today was finally the day.  I pureed up some banana and breastmilk (who wants some?!) in my awesome  Blendtec blender and dug out the sippy cup that she hasn't used in about a month.  We headed off to the hospital without really knowing what to expect.  When we finally got into the room, they sat Zadie in this little chair and strapped her in.  She was so ticked off!  I put on my big lead vest and they set up the xray camera next to her.  It was cute to see her little head moving around on the xray screen.  After they added the barium to the banana puree, I started to feed her.  She was flipping out, probably very hungry and not happy about sitting in that seat at that moment.  But they kept telling me to give her more, so every time she opened her mouth to cry, I'd just stick another spoonful in.  I was trying to watch the screen while feeding her, and I did get to see her swallowing!  Then we tried just the straight breastmilk and she did great with that, too.  It was all very fast-paced and was over pretty quickly.  She passed with flying colors!

With just a week and a day to spare until her birthday, Zadie says, "Bring on the birthday cake!"