Audrey is 2 Years and 8 Months Old!

Our sweet Audrey beans is doing so well.  It's been a wild month so let's get right in it!

-We spent some time in Cincinnati in the middle of the month.  Audrey had an appointment with a renowned pediatric ENT surgeon to repair her laryngeal cleft.  We spent a super fun day exploring the Newport (KY) area and took Audrey to Build A Bear, the Cincinnati Zoo (she got to feed a giraffe-- so much fun!) and then showed up nice and early for her surgery the next day.  She stayed overnight at the hospital and we were discharged the next day.  Now begins the tedious task of weaning down her gel thickener as she learns to drink regular liquids.

 - She has made HUGE strides with potty training this week-- earning lots of Little Debbie cakes (we call them PooPoo Cakes-- she earns one for every time she poops in the potty!)  She is so proud of herself! She is nearly completely potty trained now and we are so happy for her- she is wonderful.

 - We spend lots and lots of time looking out the window for bugs and birds.  She is very interested in birds but the bugs make her scared....either way it's a very dramatic and very entertaining reaction when she sees either one!

 -We have spent a lot of time outside as well- wandering around, dancing, etc.  We are hardly inside at all anymore- so happy for warmer weather!

 - We headed to the beach for a week of vacation- so needed!  The girls LOVED Ripley's Aquarium and getting to swim for hours every day. 

 - We've spent lots of time unclothed as well (well, she has- I like to wear clothes haha).  We find Audrey buck naked more often than not...such a funny kiddo.  :)

Audrey is 2 Years 7 Months Old!

Playing photo catch-up...enjoy!

-Lots of playing outside.  She can now ride her tricycle with almost no assistance!

 -She can go about this far up the climbing wall. Last year she wouldn't even go near it so this is big!

 -She and Emily posed for me while I was shooting images for a workshop:

 -She loved on her dog, haha!

 -She went to the tball parade and watched for Emily... not very thrilled about the sirens from the fire trucks.

 -But we sat alone so she got TONS of candy...and that made up for it. :)

 - She got her big girl bed and slept in it starting about a week after we put it in- so big!

 -She had her Baptism in early April.

 -With her godparents, Damian and Ashley:

-Our family on the big day:

-We headed to Cincinnati Children's Hospital for her laryngeal cleft surgery (more on that in another post).

Audrey- Surgery Update

Paul spoke to the doctor yesterday-- called his office as it had been almost 10 days since her surgery and we hadn't heard anything (and I think he got tired of me asking).  It turns out the physician in Cincinnati didn't ever respond about Audrey's results (didn't I SAY that was going to happen??) and so he consulted a peds ENT who just recently left our area (the one we would have used in the first place, had he still been here). 

The news is not good/not bad.  Apparently she does not *quite* meet the specifications for a Type 1 Laryngeal Cleft, as we initially thought.  He (peds ENT) thinks that she will simply grow out of it and we should continue on with life as usual (so thickening all drinks, monitoring her closely during baths and swimming, etc). 

 I would be lying if I said I was not disappointed.  Believe me-- it's NOT that I wanted her to have another surgery. I didn't.  But I DID want to have this problem fixed once and for all.  Waiting this out, however long it may be, is sort of torturous.  She misses out on things because of this- I won't send her to places where I am not 100% sure that she will be monitored closely.  For instance, my good friend Andrea invited Audrey to go to summer day camp a few days/ week over in Huntington with Andrea's girls...and I said no because I just can't let her go someplace like that yet.  She is supposed to go to Emily's preschool 2 days/ week starting this fall and I am not sure if I will let her go if it's still happening.  The risk is simply too great for her to get access to someone else's cup, or to be given an unthickened liquid.  It's not that anyone is "out to get her" or something like that-- usually it's a well-meaning person who simply doesn't want her to be thirsty...and so they fill up her cup with water, or juice, or whatever...and she chokes and gags and potentially aspirates, which could lead to pneumonia (again).  It is so frustrating! And we just booked that trip to Great Wolf Lodge and I am pretty sure she won't be able to go there with us since an accidental ingestion is almost certain to occur at a water park.  :( That will make 2 vacations now that we haven't brought her on this year, and I feel really guilty about that...but there is no way she can safely go to a water park and have a problem with swallowing, you know?

 I did ask Paul how long the ENT thinks we will have to wait for her to "grow out of this" and he said that the doctor offered no time frame for it at all.  We were already told it would be by the time she turned 1, which obviously wasn't true.  I know that no one has a crystal ball but I hate that we didn't really get an answer out of the study. :( And I hate that this is so open-ended and we have no end in sight for the gel.  I am very discouraged. 

 Nevertheless, I am very happy that she was fine during the surgery, and I guess I'm sort of relieved that we aren't facing some risky procedure to fix it.  BUT...... I still wish we had some answers.

Audrey- Swallowing Surgery

Today sweet Audrey had a surgery done at our hospital to see if we can pinpoint the root of her swallowing problem.  In case you need to be caught up, Audrey aspirates thin liquids (that is, basically any liquid that we have not thickened with her gel thickener) up into her nose/ airway and also down into her lungs.  She has had 3 swallow studies done that have shown us this occurring.  The purpose of the surgery today was to have her esophagus examined using an endoscope and to take biopsies of her esophagus to see if she has damage from acid reflux.

We arrived at the hospital at 6:45 and got checked in.  Poor Audrey couldn't have anything to eat or drink and she was not very happy about that.  We walked around and waited in the waiting area until they called us back.  We were visited by the anesthesia team and also by Dr G, who was doing her surgery.  They gave her some liquid versed and she started to calm down.  She actually got pretty funny-- looking at her hands all weird and giggling a lot.  I think it would be a very handy substance to have on hand when we have to fly with the girls, just saying. ;)

Finally she was calmed down enough for them to come and take her.  I was very upset and didn't really want to let her go, but obviously we needed answers so I handed her off.  She took her Piggy Pig that she always sleeps with and headed back to the OR with a really nice nurse.

We waited about 40 minutes or so (I have no idea...it felt like 350 years!) and finally Dr G came out to us.  He showed us some images he had taken during the surgery and explained things.  Apparently she is right on the cusp of having something called a Type 1 Laryngeal Cleft, although he's not quite sure her defect is big enough to warrant surgery to fix it.  He wants to consult with a physician in Cincinnati about her case before he makes any recommendations.  He said she did great during the surgery and there were no complications.  We thanked him and went back to the waiting room to wait on Audrey.

After a little while longer they called us.  We had no sooner gotten within about 20 feet of the doors to the recovery area when I heard her SCREAMING bloody murder. I pushed past the nurse who was waiting for us and turned into Mother Bear... I scooted back to where she was and there was a team of nurses crowded around her.  Audrey's poor voice was crackly and straining and she was in full-on freak out mode...she has never cried so long or so hard.  It turns out that they had to give her IV Tylenol and had not done it before she woke up.  Apparently it has to be administered through the IV at a certain rate and was going to take 15 minutes to give to her.  So, the nurses were trying to control her, keep her still, prevent her from ripping out the IV, give the Tylenol, give her the paci she kept losing from crying/yelling so much....it was a disaster.  My poor little baby was just losing it. I picked her up and tried my best to hold her still and help the nurses.  Finally the 15 minutes was over and they removed the IV (more screaming).  She wouldn't let them put a band aid on it so I had to try to hold a piece of gauze on her... pointless.  She was flailing around so much, she just couldn't seem to get calmed down at all.  They had originally told Paul that she would have to stay in recovery until she drank something but they didn't make us wait that long- they basically gave Paul the checkout information and said, "If you're good, we're good..."...pretty much so nonverbally begging us to get this crazy crying baby OUT of recovery.  I can't imagine how hard it was for the other recovering patients to listen to her crying so much!  It was hard on everyone.

Paul and I took her to the car and I put her in her carseat and just waited with her for a while.  She was so drowsy and fell asleep on the way home.  Once we got home she wanted to play but she was way too wobbly to do anything.  I eventually just had to lie her in her crib and she fell asleep in just a few minutes.  I was worried about her but she just needed to rest a lot to get feeling better.

She slept for about 2 hours and then woke up STARVING.  Remember that she hadn't had anything since around 7pm the night before- so this was 17 hours of nothing to eat or drink.  That baby ate like nobody's business!!!! She had tons of food and drink...I seriously wondered if she was ever going to stop eating! She took another nap after we played for a while (she wasn't wobbly anymore after the first nap) and when she woke up after the second nap I felt like it would be OK for me to leave her and go to the dance recital that Emily was in that night.  It seemed crazy to leave a baby who had just had minor surgery but honestly, you couldn't tell at all that anything was different.  I was so glad she was feeling better and I didn't have to choose between which child to support tonight!   Now we wait to hear something back from the physician.  Hoping for good news, and maybe a cause as to what's causing her to aspirate.

PS- No photos with this update. I didn't think it was appropriate for me to be taking photos in the hospital, and I wanted to be "present" with Audrey- not trying to get a good shot.  I know you understand. :)