How to Travel with a Trach Baby

We just recently returned from an 11 day trip through the south.  We really briefly considered taking one of our nurses with us, but we really wanted our first family vacation to be just us.  We had a great time, and here's my advice and tips for anyone considering traveling with a trach baby!

• There's no such thing as traveling lightly with a trach baby.  I started to put all of Zadie's supplies in a big tote bag, and then decided just to go for the third suitcase.  I had to bring enough supplies for 11 days plus enough extras just in case!  Also, the night before we left, Zadie was desatting a little while sleeping, which means her blood oxygen levels were a little low.  The orders are for her to be on oxygen if her oxygen levels stay below 92%.  We had planned on bringing oxygen tanks, but they only last a few hours each, so if she really needed oxygen on the trip, the tanks wouldn't help too much.  So we decided to bring the huge oxygen concentrator with us.  Wouldn't you know it, she didn't need a bit of oxygen the entire trip!  Though I truly believe that if we hadn't brought it, she would have needed oxygen and we would have been sweating it.  

• Keep the suction machine at arm's length.  This is something most trach parents do anyway, but we were driving for hours most days, and it wouldn't have been great if we had to pull over every time she needed suctioning.  I kept the machine right behind me, and Zadie's seat was in the middle.  If she needed suctioning while we were on the road, I just turned around in my seat and suctioned her rather than pulling over.  We pulled over plenty as it was with a 4 year old who apparently has a bladder the size of a walnut.  

• Don't expect to be in and out quickly of hotels.  We didn't stay in any one place too long; the longest stop was four nights.  Normally, it's not such a big deal to stop at a hotel for one night, pull out the clothes you need for the next day, and zip up the bag in the morning.  But, with Zadie girl, we had a luggage cart completely full for each stop.   Three suitcases, Zadie's humidifier, her apnea monitor, her pack n play, her pillow and blanket, plus toys for the kids.  And getting packed up in the morning took some time, in addition to doing all of Zadie's trach care before hitting the road.  It was nice when we were in a hotel for more than one night and we didn't have to do all the unpacking and packing.  

• Bring an extension cord, a 3 prong adapter and a power strip.  The power strip was key.  I'm glad I thought of it!  Actually, it wasn't me, it was BJ.  But with all the stuff we had to plug in and charge every night, it would have been rough without it.

• Have fun!  We did!

Visit with the surgeon today

Zadie had another follow up with her surgeon, the Italian Stallion, today.  He's Italian, of course, and kind of dashing and he wears red clogs regularly.  Anyway, I didn't expect much of the visit except for him to look at her palate and say it looked good.  I know that it's holding steady up there because Zadie was sucking yogurt off my finger yesterday and has really good suction!  She also drinks really well from her sippy cup.

So, I was surprised that the director of the craniofacial team came into the exam room also.  He began asking me questions about Zadie's progress with eating.  I told him how she's doing, and then he asked who is following her about her trach and what they think about her getting it out.  I thought that was odd, because he's from the craniofacial team who is supposed to be following her and guiding us along.    We don't really have anyone following her specifically for the trach and should we?  I don't know.  We have the ENT, but we've only met him once, and at the time, he said that Zadie will probably have her trach until she's closer to 2, so we won't be looking to decannulate (remove the trach) much sooner than that.

I then mentioned that I was going to be calling the ENT soon to make an appointment to talk about possible downsizing the trach and working on the speaking valve.  Zadie's almost 14 months old and because of this stupid trach, she doesn't make any noise.  She should be talking and saying words by now, and she doesn't make a peep.  So with that, the doctor says, "Yeah, you should be talking to him about that, because we're behind already, she should be making noise and speaking by now."  Well, thanks, pal.  I wasn't upset enough about the fact, now you made me feel worse and now I feel like I'm holding her back because I haven't been pursuing things enough.  Blah.

So, hopefully we'll have an appointment with a pulmonologist next week who we can talk to about the status of the trach.  I'll get an appointment with the ENT and one of the speech pathologists to talk about downsizing and working with the speaking valve.  Then we'll have another meeting with the craniofacial team about the plan going forward.  I really hope that we someday get to the point where we feel like someone is driving the bus and directing Zadie's care!  I had this anxiety months ago, but I thought it was resolved.  Apparently, I was wrong.

I also have to find an eye doctor in our plan to make sure Zadie's eyesight is ok.  There is a genetic syndrome often associated with Pierre Robin called Stickler's and while Zadie doesn't appear to have it, she still needs to see an eye doctor.  Kids with Stickler's often have eye problems.  She also needs to get an appointment with a dentist.  Lots of appointments in the next few weeks!

Happy Trachiversary!

Today marks one year since Zadie was trached.  A year ago yesterday, on the 4th of July, we were woken up by a call from the hospital.  That's never good.  But the call was a few days coming.

On June 30 of 2011, Zadie had a G tube surgically placed.  Her eating hadn't progressed enough and the hospital wouldn't send her home with a nasogastric (NG) tube, the temporary one that goes through the nose to the stomach.  They didn't want to keep her in the hospital just for eating issues, so it was decided that she'd get a G tube.

She went through the surgery just fine.  It was scary for us to leave her with the surgeon and anesthesiologist, but it went quick.  She was intubated for the surgery, meaning she had a tube inserted down her throat to help her breathe through the surgery.  Since she had such a tricky airway (part of her condition, Pierre Robin Sequence, causes the airway to be funky), they were worried about intubating her, but didn't have trouble once she was under anesthesia.  They extubated her (removed the breathing tube) the following day.  She had always had trouble breathing in certain positions, but before the G tube surgery, if she was laying on her belly or her side, she was ok.  She also had a nasopharnygeal (NP) tube, also known as a trumpet, inserted in her nose when she was about 10 days old. The purpose of that was to help keep her airway open more.

Now, after the G tube surgery, she was pretty miserable.  Not breathing easily in any position, and her oxygen saturations were not great.  The surgery was on Thursday, she was extubated on Friday, and by Sunday morning the 3rd, she was on oxygen.  She was holding her own, though, and we kept being reassured that her airway was probably just swollen from the intubation.  I kept asking if the intubation possibly damaged her airway, but the doctors kept saying it was just swollen.

So, on the morning of the 4th of July, we were woken up by a call from Dr. Ruben, Zadie's neonatologist.  She said that Zadie's breathing had worsened to the point that they needed to intubate her again.  They tried to do it while she was awake, but were unable to, so they had to put her under for it.  Since we weren't there, we had to give our permission over the phone for her to go under anesthesia to be intubated.  During that phone call, Dr. Ruben also told us that Zadie would need a tracheostomy as soon as possible.  This was the first time we had heard that word in relation to Zadie!

When we went to see Zadie later on, she was already out of anesthesia and intubated.  They had her little hands pinned down to the bed so that she couldn't pull the tube out.  She was looking at me like she wanted me to help her.  That was probably the hardest day of all the days in the NICU.  It was the first time I was afraid that we were going to lose her.  I was crying and trying to get the nerve to ask a question that was floating around in my head.  I finally got the nerve and asked, "Is she going to be ok?" Her nurse just looked at the doctor, who said, "Her problems are all mechanical.  She's not a sick baby. We just need to fix her mechanical problems."  The fact that she didn't say, "Yes, she'll be fine" was not lost on me, but I did feel better having asked.

Since it was 4th of July, it was hard for even the doctors to get a hold of the surgeon.  When they finally did, he said he could do the trach surgery on Wednesday, the 6th.  Zadie's doctor wasn't satisfied with that.  She insisted he do it the next day, on the 5th.  The fact that she was so nervous and anxious to get the surgery done made me very anxious and nervous!  The doctors in the NICU were used to little bitty preemies, not robust full termers who could easily pull out tubes.  Zadie's doctor was very nervous that Zadie would pull out her tube and it would be so difficult for them to get it back in, that it might be a very bad situation.

So, on July 5, 2011, we walked our sweet little girl down to the OR for the second time in 5 days and she was put under anesthesia for the third time in 5 days.  Again, the surgery went quick and she did well.  When we got to see her, it was like seeing a different baby!  She was laying on her back (previously had always been on her belly or side) and she just seemed happier and more comfortable than she had ever been in her 5 short weeks on earth.

When I think back to that time, I realize how little of a clue I had about what lay ahead.  I understood what a trach was, I knew some people had them for awhile, but I could never have predicted what our life would turn out to be like.  I hope that Zadie is able to lose the trach by her next trachiversary, but I'll be ok with it if she's not.  It saved her life.

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!