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's weekend away...

Zadie decided she needed another weekend away, so Friday morning, after a week of fighting what seemed to be a cold, she woke up with a fever. Off to the ER we went. She ended up being admitted, although I don't think it's clear what was going on. There are aspiration concerns, so she is on strictly G tube feedings for now, nothing by mouth. It's already not fun, because she's clearly interested in food. When she is recovered, she'll be getting a swallow study. I have asked a few times about a swallow study at her feeding clinic, but they have always said it was unnecessary. I will be mighty upset if it turns out that all her troubles recently have been from aspiration.

 She's still scheduled for her palate surgery next Tuesday, May 1. I was worried this latest illness would affect things, but she's still on, unless she's very congested. So, she'll be back in a hospital (a different one) next week, if all goes well! A nutritionist stopped by Zadie's room on Saturday. She said she looks like she's doing great on breastmilk. I asked her if she had any experience with the blenderized diet. She didn't seem to have too much experience with it, and mentioned how much work it would be. She mentioned that bacteria is a risk of that diet, because food is more likely to be caught in the tube. That seems like just another excuse. She also said that formula is already made to have all of the proper nutrients, etc. It's weird that a nutritionist thinks formula is better than fresh, real food. It seems like, for some reason, most medical professionals are not too enthused. I don't get it!

The nutritionist also said that breastmilk should be enough for Zadie past a year, maybe to 15 or even 18 months! So I had been planning on quitting pumping soon, but I guess it looks like I'll be doing it for a little longer. And I guess that means that I should finally BUY a pump, rather than keep renting the hospital pump. Zadie should be released today. She got her batteries recharged and enjoyed the chest PT from the nice respiratory therapists. She's ready to get out of this crib and back to cruising around the house. And hopefully not coming back here any time soon!

No real direction yet...

I've been wanting to start blogging about Zadie's condition and continuing progress.  I'm finally doing it!

A quick recap - Zadie is now 8 months old and was diagnosed with Pierre Robin Sequence the day she was born.  She has a cleft palate and micrognathia (an underdeveloped lower jaw), which makes her tongue fall back into her airway, making both breathing and eating difficult.  She spent 10 weeks in the NICU, and has a G-tube (feeding tube) and a trach.  She used to take some milk by bottle, but now takes 100% by the tube.  We're working on spoon feeding now!  Because of the trach, she doesn't make any sounds.  I never imagined that I would wish to be able to hear my baby screaming her lungs out, but I can't wait for that day!

Other than her main limitations (which are temporary!), Zadie is a very typical 8 month old.  She's almost crawling, and she just started pulling herself up yesterday.  She loves her new skill, but we're still encouraging crawling!  She's also very healthy.  She's only been hospitalized once since she came home (that's good for a baby with a trach!) and hasn't had any ear infections (knock on wood).   She does have fluid in her ears, which is almost expected with the cleft palate, but it is affecting her hearing.  She'll probably be getting tubes soon.

As for the title of this post, we're still kind of up in the air as to the course of action for Zadie, and it makes me more and more nervous as she gets older.  She will definitely need her palate repaired, and that will be done somewhere around her first birthday.  But, there are other things in play and different opinions about the best thing to do.  We've seen three craniofacial teams, St. Barnabas, St. Joseph's, and CHOP.  They all pretty much have a different idea of what to do, and none of them seem to have stepped up to say, we're the best ones to take care of your daughter.  So we're still trying to figure out what to do.  It's a scary situation to have to decide for your little baby which direction to go in, when our decisions will likely have a huge impact on her life.  Right now, we're just trying to keep on top of everything and hope that the right course will be revealed.