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!

Video of Zadie's trach change

Check out Zadie getting her trach changed! We do this about once a week. 

Not the answer we were expecting...

The nurse at the ENT's office told me that Dr. Javia was "pleased" with the results of the sleep study.  She said he wanted us to meet with the sleep doctor, Dr. DelRosso, (since this doctor works out of the pulmonary department, I mistakenly thought she was a pulmonologist - she's not) to go over some numbers to see if she agreed that Zadie was ready for decannulation.  We were pretty encouraged and even though I tried not to get my hopes up, we really thought we would get a green light to decann.  We were wrong!

Getting vitals!

First, the doctor didn't even seem to know why we were there.  She asked if we had done the sleep study to see if Zadie was ready to be capped (Zadie's been capped for over a year).  She also said more than once that she hadn't reviewed the study.  We made this appointment over two weeks ago, why hadn't she prepared?  In the middle of the appointment, she left the room for about twenty minutes to take a better look at the results.  She said that Zadie now has central apnea, which she never had before.  While her obstructive sleep apnea is now greatly reduced (an AHI of 1.8 at this study compared to an AHI of 75 at the last study), she now has central.  Central apnea is when the brain doesn't tell the body to breathe.  There is no surgical fix for it.  And there is no obvious cause of it for Zadie.  Dr. DelRosso said that reflux and asthma are two causes of it, neither of which Zadie has symptoms of.  She also said it was possible that it wasn't true central apnea, but just oxygen desaturations.  Out of the whole night (7 or 8 hours of sleep), Zadie's oxygen saturations (sats) were below 90 for 3.5% of the time, or 15 minutes total.  To us, this doesn't sound significant, but apparently it is.  The doctor also said that Zadie's sats dropped pretty dramatically during short pauses in breathing.  Whereas most kids can hold their breath for 20 seconds and have no desats, Zadie's sats dropped significantly during 5 second pauses in breathing.  Again, no reason why this could be happening.  Dr. DelRosso's only theory is that now that Zadie's airway is open (and was previously obstructed), her body is not used it and is overcompensating.  

The first step was to get a chest xray to make sure that Zadie's lungs look ok.  We had that done yesterday while we were at the hospital.  They also took an xray of her head so the doctor could look at her adenoids to see if they had grown back at all (they had grown back somewhat between her adenoidectomy in September to her tonsillectomy in May).  Since xrays are all digital now, we went back to the doctor's office to see if she could look at them right away.  She did come back and see us and looked at the xrays while we were there.  She said everything looked good.  The next thing would be to decide if Zadie needed an MRI of her brain to rule out anything going on there that would possibly be causing the apnea.  Her office called me today and said that Dr. DelRosso had consulted with the sleep lab director and they decided that it was best if Zadie got the MRI.  Because she has the trach, she has to be under general anesthesia.  They will be doing an MRI of her spine at the same time since she'll be under.  

Chest xray

Head xray (you can see BJ's fingers holding her head back!)

Meanwhile, I had left a message for Dr. Javia's (ENT) office.  I wanted to talk to him about how blindsided we were about the results.  Dr. Javia actually called me himself and said he was sorry for the miscommunication.  I'm not sure what I was looking for from him, but I'm just very upset that I feel like we're getting nowhere.  We're spinning our wheels trying to get Zadie decannulated and new stuff keeps popping up and keeping her trached.  We want to get another opinion, but at the same time, to start over with someone new would absolutely delay decann.  I feel like we've invested so much in CHOP that we have to keep sticking it out with them.  Dr. Javia called me back a second time this afternoon to say that he had spoken to Dr. DelRosso and she said that decannulation is still a possibility, but they want to rule some stuff out first.  I don't know if that means decann is a possibility this year, but we're already in August, and they will not decann during cold and flu season.  I have a feeling we'll be seeing another winter with the trach.  

The good thing is, Zadie is good.  She's happy and healthy and doesn't know anything different. I just hate to see her continually have to go through all this stuff.  This will be her ninth time going under general anesthesia, if I'm remembering correctly.  

I'm interested in hearing from others where central apnea has popped up out of nowhere and what was the cause and outcome!