Dancing Through the Chaos: May 2012

Yep. The shirt pretty much sums it up.

Helping Daddy in the Garden

Audrey has had QUITE a month!!! This time, in a good way. In fact I dare say BEST. EVER. Everyone must have been saying some powerful prayers. She has been healthy, and happy, and ready to grow. She has gone from sitting, to bum-scooching, to now almost a true crawling. She pulls up on people and things to almost a complete stand. She babbles and giggles and "gets the joke", and even is saying some recognizable "words" like DaDa and NaNa to verbally communicate what she wants. But best of all, she has been ATTACKING food. Holding her back from grabbing solid food is like trying to stop a tsunami. She was doing so well that her surgeon even temporarily canceled her acid probe test he had planned for last month. He still doesn't want to dilate her more aggressively until we evaluate the amount of reflux she is having, and she did need one normal dilation on April 23rd (her tenth), but the time between her required dilations has been getting longer. In the meantime we have taken full advantage of the opportunity to get outdoors and PLAY, and it seems to be true that laughter and playtime are extraordinary medicine. With new teeth coming in rapidly, and a huge growth spurt, she has been sleeping a ton and gnawing on stuff. Awesome as that is, our main problem comes when she actually gets a big chunk of something and it gets stuck in her little wiggly-shaped, tight-in-the-middle esophagus. Then, it has to come back out. We learned the hard way that she shouldn't teethe on carrots, and that even something as seemingly innocent as the stem of a banana (she had grabbed a whole banana off the table and was really funny just chewing on it for a minute) can be bad news. Luckily for our learning curve, she has eventually thrown up everything that could not go all the way down, and we have since learned about these wonderful baby mesh food pouches that have SAVED OUR BACON. Literally. She can now chew on bacon, or pizza, or strawberries, to her heart's delight!

On Audrey's birthday, one of her therapists told us about these mesh food strainers for teething babies, and I ran out and bought three of them right away. You put a portion of whatever the family is eating into the pocket, and they snap together. As you can see, she highly approves.

WARNING-- BORING PARAGRAPH FOLLOWS. SKIP TO SEE COOL PHOTOS OF CUTE BABY

The bottom line is, we need to get her dilated all the way open. Each monthly "maintenance" dilation surgery keeps her hovering around a 28-french opening, which is about one third of an inch or 9.3 mm, and roughly 2/3 of the total width she has available. Her surgeon says that is the point at which the scar begins to give a definite resistance to being spread by the instruments, and he is tremendously careful to avoid risking a tear. To get her wider, we would have to do the surgeries much more frequently, and/or try some other methods I mentioned in my previous post. But he does not want to try to get her any wider until he has established that the reason her scar keeps regrowing is not acid reflux. If it is reflux, he wants to consider surgery for the reflux, because of the dangers of damage to her esophagus from the reflux itself and because the scar will only continue to grow. So, her eleventh dilation surgery is scheduled for June 1st, and we will do her 24-hour acid probe test at Primary the following week. Poor baby, I am dreading the test because it will involve her having some wires placed down her throat (under anesthesia) that have to come up and out her nose, attached to equipment, and having to stay pretty still for 24 hours as an inpatient up at Primary Children's Medical Center. But, the results of the probe will be the info we need to see how much reflux she is having. At the moment I am very worried about what will happen if they recommend the reflux surgery, because she is doing so well and there are huge complications that could result from that surgery in Audrey's case due to the unusual nature of her anatomy. It would take a lot right now to convince me to go forward with it. But I am trying to remain open to the idea that it may be what is best for her, depending on what we learn in the test. The surgery is called a Nissen fundoplication -- where they fasten the stomach in a wrap around the base of the esophagus, putting Audrey at serious risk for a major tear with her ultra-fragile esophagus, which would likely require a huge new surgery called a gastric pullup where they pull the stomach up into the throat... months of recovery, you get the idea, yeah, it isn't pretty, plus they'd need to close in her current G-tube site and give her a new one just in order to do the Nissen, and hers is about as perfect as it gets, plus her stomach is already unusually small -- so worrying about the surgery has spurred me to do all I can to help her be as ready as possible for a successful outcome just in case that IS where we are headed. One of her AWESOME therapists taught me some tricks to signal the stomach to grow larger, and they appear to be working like a charm! Thanks to that same therapist, we also learned how to Gavage feed (sometimes called Bolus) Audrey using a gravity-fed system, which has helped us to figure out a better flow rate for her pump. She is now getting about 5 ounces over the course of 30 minutes, every couple of hours during the day until bedtime, 30 ounces a day. (No more continuous feed! No more night feed! Which also means.... no more early morning blowouts, YAY! Hahahaha!) That seems to be what her body wants and how quickly it can handle it, but thanks to her stomach getting larger, we are probably going to be seeing those numbers improve even more over the next few weeks to become more like a normal child's meal schedule. Soooo, that's all for the boring stuff. Here's the part I'm sure you REALLY wanted to see:

Audrey's First Easter


Farewell to my carefree days of super FROO!

Audrey is on to me!

And she is making her opinion known!

First Birthday Party

The birthday girl!!! We had her dilation on Monday, thinking that would be plenty of time for her to recover for the Saturday party-- but when the day arrived, she was very serious and reserved for some reason, even though she'd jut gotten up from her nap. I was worried at first that she was getting sick, but now I'm convinced it was just part of her growth spurt. She had also scratched her face under her eye pretty badly at some point during the surgery, but she still looked so sweet in her party dress! This party was a fun project for me, and we had a lovely time. I designed everything to coordinate with her dress.


Our wonderful baker did the party cake to match her dress, inside and out!

Fresh Marshmallow Fondant and berry filling.... heaven!!

Our talented friend sketched Audrey soon after she came home from the hospital, in early October. The drawing was too sweet to leave hidden in a book, so I cut it out and put it up for the party. Another dear friend surprised me by decorating one of the hospital breast milk storage bottles with a painted eggshell mosaic rose-- funny, at the end of eight months I was so sick of pumping I thought I would never want to see one of those bottles again, but as time goes on I begin to recognize a very special symbol in it. It speaks of perseverance, love, and instead of the failure I'd felt at the time, even a triumph of sorts.

We wanted a special cake, smaller, for just our family to enjoy on her actual birthday which was two days after the party, so we requested it at the same time as the party cake and used it as part of the decor. I was very happy with how my impromptu cake tutus turned out. Audrey's name is actually Audrey Rose, so we had to have the rose cake!

Grandma and Grandpa attending Audrey's Birthday party via Skype.


Three of our most very special friends! Angie and baby Charly, and our wonderful former therapist, Kiley. Thank you for driving so far to come visit, you sweet ladies!

The BEST part about having just been dilated right before her birthday..... SMASH CAKE!!

She's been saving up all those dreams of chocolate. When the time came, she knew just what to do. Clearly from her expression, it was serious business!