And that, my friend, is what they call (stoma) closure.

Waiting with her Tubie Friends bear - who also got a hospital bracelet

Zadie is now blessed with only the holes God gave her.  She went in last week to have her trach stoma surgically closed.  At the same time, the surgeon cleaned up the scar tissue at her Gtube site and made sure that was fully closed.  I was able to go into the OR with her and be with her until she was asleep.  The surgery took about an hour and a half.  The anesthesiologist told me after that she was easy to intubate, which is excellent news, since a huge reason for her being trached was how difficult she was to intubate.  It's another sign that her lower jaw has grown out significantly and her upper airway is vastly improved.  A lot of Pierre Robin kids get jaw distractions, and it was suggested as a possibility for Zadie at one point.  We're very happy we elected to wait and see how her jaw grew out on its own.   


All ready to go!

When I first got to see her in recovery, she was still asleep.  They extubated her while still in a very deep sleep so that she didn't cough.  I saw Dr. Bergman right after surgery, he said everything went great.  I asked about the main possible complication, which is when air gets trapped between layers of skin.  It can be a very serious complication.  He was very confident that it wouldn't happen, since they had tested the closure in the OR by pushing air through. 


Once she was awake, she was pretty cranky, which is what she's typically like after anesthesia.  But, her oxygen sats were awesome.  Upper 90s.  I was so relieved to see that.  One of my worries going into this surgery was that she was relying on the open stoma to breathe and she would struggle once it was closed.  Seeing the good oxygen levels really reassured me. 




Great numbers!

She was to be admitted for the night just for observation, and it took forever to get a room in the PICU.  Unfortunately, she couldn't eat or drink anything for 6 hours after the surgery.  She was getting IV fluids all along, but she was hungry and thirsty.  Once we got past the 6 hours, she was allowed liquids, which included jello, yogurt, ice cream, juice, etc.  Then, the next morning, she was finally able to eat real food. 










Her new bear got bandaids in the same spot Zadie did. 

First meal, 24 hours after surgery

Feeling great and ready to bust out

 

She got released on Saturday afternoon.  We took the dressings off on Sunday.  She was a little freaked out by the sight of the incision on her belly.  She was asking a lot of questions; why was there blood, how did the doctor cut her, etc.  I wasn't expecting that!  But, it's amazing to see her neck without a hole!  And it's amazing to hear her talk without hearing the air rushing out of the stoma. 

Escaping!

Every day, she shows me her belly and her neck and says, "Look, it's healing up!" and asks me to take a picture.  She's definitely a strong kid and I would love it if this is her last surgery and she can just be a regular kid now. 

Some info on decannulation and stoma closure: http://www.chop.edu/treatments/tracheostomy-and-decannulation#.VvGl2W_mqM8

I was and am a successful breastfeeding mother!

I'm very excited that Zadie and I were included in a kellymom.com article about the different faces of breastfeeding.

When you think of breastfeeding, it's usually a mom with a baby on her breast, but that's not always the case.  Zadie couldn't even drink from a bottle very well, so direct nursing was out of the picture.  Not only did her cleft palate make forming a seal in order to suck a bottle impossible, her small chin and tongue falling on her airway made everything even more difficult.

I did try to nurse her once, but she and I were too stressed out and I decided that it wasn't that important.  What was important to me was that she got what she needed, however she got it. We attempted feeding her orally every day, just about every feeding, using a Haberman, or Special Needs Feeder.  It has a special nipple which allowed us to squeeze the milk into her mouth while she tried to suck.  We only tried for 30 minutes at a time, because after that, we were told that she would be expending too much energy.  She was primarily tube fed for her first year.  Once her palate was repaired when she was 11 months old, she really got much better at drinking.  

I exclusively pumped for her for 18 months, and the majority of her nutrition for those 18 months was breast milk.  She was eating very little in the way of solids, but I was continually reassured (by doctors and nutritionists) that my milk was all she needed at that age.  We did transition to formula, with plans to further transition to a blenderized diet, but luckily for everyone, her solid food intake increased.

Flash forward to today, and I'm successfully nursing Zadie's 8 month old little sister, Beatrix!

Zadie turned 2!

Zadie turned 2 on Friday!  She had a fun day, spent some time at Jonathan's preschool, then we went to Chuck E. Cheese and then out to dinner.  For the first night in over a week, she didn't need oxygen while sleeping.  Yesterday, Grandpa and Uncle Sammy came over.  I made cupcakes and we attempted to sing happy birthday, but it was confirmed that she really doesn't like people singing happy birthday to her.  She gets very upset!

Just an update on her progress...she is talking a lot. She still gets speech therapy once a week, and is saying all sorts of words, including uh-oh, oh no, water, wow, mouse, and the old favorites mama, dada, baba and baby.  She's getting big, too.  She went to see her pulmonologist the other day and she's now 24 pounds, which is great.  She's moved up in percentiles.  She's eating more and more.  She's also getting very fresh, scuffling with Jonathan and throwing toys.  Typical 2 year old, I guess!

Fresh out of the oven May 31, 2011

May 31, 2013

You can really see the difference in Zadie's chin from her newborn picture to her current picture.  One of the things about Pierre Robin Sequence that made it difficult for Zadie to eat and breathe was the recessed chin (micrognathia).  If she was born at another hospital, she probably would have had a jaw distraction, but St. Barnabas doesn't really do them and they opted to let her chin grow out on its own.  A plastic surgeon at CHOP wanted to do the distraction later on in order for her to lose the trach, but we decided to wait and see what happened.  So far, I think we made the right decision.  Her chin has grown out a lot and her trach is capped all day long, meaning she's breathing through her mouth and nose.  We're hoping she is decannulated (loses the trach) this summer!

Plastic surgeon follow up

Zadie had another follow up with the surgeon who repaired her palate. It's hard to believe that it's been more than 8 months since she had the surgery!  He said she looks great, and in particular, he remarked on how good her lower jaw is looking. He said that he's glad we never did anything surgically to it.  Her lower jaw was recessed when she was born (a hallmark of Pierre Robin Sequence), and it was a major reason she had trouble eating and breathing. If she had been born in another hospital, she might have had jaw distraction right away, and she might have avoided the trach. But, she was born where she was and they don't really do jaw distractions at St. Barnabas. So, she ended up with the trach. A plastic surgeon at CHOP later suggested a jaw distraction in order to get rid of the trach, but we weren't positive that it was completely necessary, and we decided to wait and see what her jaw did on its own.

It's possible that she will still need some kind of jaw surgery in the future, but right now, she's looking good! We're hoping to get rid of the trach in a few months and just keep moving forward.