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Hotel California

Looks like we’ve checked in without any plans to leave soon.

Your breathing is compromised because your palate repair is very high and your new nasal cavities much smaller. With the swelling, the lowered immunity after anaesthetic (so you may have caught a cold), and the disproportionately large turbinates for your new nose, it’s not surprising you are having trouble breathing. So they want to keep you here for a few more nights to make sure everything settles back to normal. They also want to do a sleep test for sleep apnea, which is worrying. It is possible that you could have sleep apnea for the rest of your life, but I’m considering that a real outlier.

The good news is that you’re not under observation. You’re still in the regular room, sleeping on your stomach with the plastic tube of air blowing in the direction of your face, but you don’t have a tent. Li the nurse just popped in and was very happy you were still sleeping. Let’s hope this is a sign of good things to come.

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Ugh

Once the initial euphoria of the surgery wore off, the reality of recovery walloped us all with its sledgehammer.

Your first night was awful, or so we found out on greater detail the following evening. You were so restless that you pulled out your IV. No one was able to put it back in, including the anesthesia team. The nurse who was on last night was on the previous night, and she told us, much to our great distress, that it was so unpleasant she and the other nurse had to leave the room. Not only did you go through such misery, but as a consequence you were now on oral pain relief (which means being awakened to receive) and had to rely on oral fluid intake only. Which wouldn’t be so bad if you comfortable feeding (read drinking) but alas that became our cross to bear as you weren’t taking to the drink. We tried all sorts of vessel variations: sippy cup with nipple, sippy cup without nipple, mixing bottle, bottle with cut nipple, water bottle, syringe, all the while dousing your hospital outfit liberally. Many times you tried to stick the whole opening in your mouth, a terrifying prospect for us. But we persevered, because the alternative was putting you back on IV.

At least you seemed in better spirits, although Dad is devastated that you haven’t smiled yet. You are still as inquisitive as ever, and you seemed to enjoy riding up and down in the elevators.

Then came last night. Your breathing was very loud and laboured, like you were swollen and congested. You were attached to the monitor (a little red-lit probe on your big toe), so the nurse could be alerted if anything was wrong. I probably fell asleep around 11:30, and at 1 am I heard another nurse talking to your night nurse about giving your something to help the swelling go down. So from then until after 3 am we dealt with your breathing, part of which involved me holding you while your cried and tried to wrestle away from the mask containing the anti-swelling vapour. Then there was more agro as we gave you more pain meds and rinsed your mouth with the syringe, but eventually you settled. One you drifted off a small plastic “tent” with a moist oxygen hose was put over your head. Just before 5 am I heard rapid knocking which turned out to be water in the oxygen tube. I kept getting up to adjust it to little avail. But at least you are sleeping peacefully and breathing well.

I sincerely hope today is a better day for you, mein bubuleh. I didnt think it would be quite this rough. We want you to get better and come home. We love you so much!!!

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Success

February 25, 2013 12:22:27 PM EST

Hi,

Our surgeon just came to us with the news that Annie’s surgery was a great success. We believe “superb” is the actual word he used.

Everything we hoped for came to pass: she had muscle in her soft palate, the ear tubes were inserted without a hitch, and she reacted well to the anesthetic. In fact, apparently she was in a happy mood right up until she went to sleep.* Stethoscopes make for great entertainment.

All of your good wishes, good vibes and  positive energy paid off. We are so lucky to have you in our lives. Thank you for being there for Annie and her parents!!!

If course, now the real fun begins with cranky baby in the horizon. But we’ll take it. 😉

Warm regards,

Alexa, Frank and the Champ

12:23:28 PM EST:  Congrats guys 🙂

12:23:41 PM EST:  AWESOME!!!! what an angel. I am so happy for you all..

12:24:14 PM EST: Fantastic news!! So glad everything worked out!

12:24:16 PM EST: Wonderful news!!! Glad to hear everything went well 🙂 Please let us know if there is anything we can do.

12:24:47 PM EST: Great great great!!!!! Thanks for the update! A big hug to the Champ!!

12:25:39 PM EST: Awesome news!!! So happy to hear that she did so well. Let us know if there is anything we can do. Otherwise just let us know when Annie is up for some visitors. We look forward to giving her a little squeeze

12:25:47 PM EST: Alexa, Frank and of course, Annie, That is wonderful news.  With her strong parents standing behind her, no wonder she came through with great success. Please let me know if there is anything you need over the coming days, besides some R&R of course. Go Annie Go.

12:26:01 PM EST: ALEXA / FRANK – Thank you so much for the email and sharing the WONDERFUL news.  I have goosebumps reading it.  So happy for you guys and you/Annie SOOOO deserve success!  Keep the good news coming and know if you need ANYTHING ….. never hesitate to reach out! Good luck with the “cranky baby” times – it won’t be easy…..but know Annie has the best parents she could possibly ever ask for!!! And she is a trooper!! Good for you guys.

12:27:19 PM EST: Was just thinking of you this a.m.! What incredible news! You and Frank must be so relieved it is over and hopefully her recovery will be swift! Get in touch when all is settled…can’t wait to see you.

12:27:31 PM EST: Hi Alexa!  Thanks for the update – I was thinking about you guys this morning driving to work and thought I must send you and email to see how things went. So delighted to hear the good news!  You must be so relieved! Speak soon and can’t wait to see you in a few weeks.  Hugs to Annie (The Champ!) and Frank and you! Get some rest! xoxox

12:34:43 PM EST:  Yippee! Your email brought tears to my eyes. I am SOOO pleased that everything went well this morning. What a trooper that Annie is! I will touch base with you later in the week to find out when you will be ready for visitors. In the meantime, please don’t hesitate to ask if there is anything I can do to help. I am sure you and Frank hear this a lot but Annie is a VERY lucky little girl to have you both as parents. You’re doing an amazing job with her. I’m excited to see Annie develop and am also pleased that Amelia and Annie will grow up as neighbours.

12:51:35 PM EST: So happy to hear all went so very well!!!!  She is a CHAMP!!! So much love, hugs, and blessings to all of you!  Will continue to send little ms sunshine loads of love and healing energy in the weeks to come!  Give her a massive hug and kiss from me! Love to both of you as well!  Thanks for keeping me updated!

2:21:40 PM EST: That’s such wonderful news – thanks for the update guys!  I’m not surprised that Annie-pants rocked it!!! 🙂

2:22:37 PM EST: That’s fantastic news.  Very happy to hear it. Give my best to the Champ. Certainly some crankiness on the way but it sounds like you couldn’t ask for a better demeanor in a little one.

2:43:33 PM EST: Congrats Alexa. That is such great news. Annie’s spirit and determination are truly remarkable. You are fortunate to have such a strong and beautiful little  girl. I will keep you in my thoughts and I can’t wait to see Annie soon!

*Ha! You didn’t even look back at us as you were taken off in the arms of the anaesthetic nurse.

* * *

End of an era: bye-bye plate.

 

Counting down the last few days

Trying not to think about the realities of your palate surgery on Monday. Your dad is worrying about all the what ifs, of course, but I’m deeply entrenched in the philosophy of living in the now. We have issued a self-imposed quarantine, so for the past few days we have had no live contact with the outside world other than walks and a few shops. (Although don’t get me started on the excruciating experience that is trying to navigate the Yonge Eglinton Centre with a stroller. I think the architect should be transported by to Medieval times and hanged, drawn and quartered.)

I really miss the music classes, drop-in centres, Friday Play and Learn at Holland Bloorview, playdates and visits. So, you and I spend a lot of time walking from the family room to the front door, visiting the withering flowers left over from my birthday (visits which have now been severely restricted since you tried to put one of the stale petals in your mouth.) We also play with the foam building blocks: I race to try to stack pieces together while you race to knock it down, both of us laughing at the other. You are still commando crawling, now thankfully without the loud complaining, and your ability to balance without support is coming along, incrementally better. Lots of babbling which is great to hear.

Ooops, nap time is over. Gotta run!

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Two weeks to go until surgery

Wee, innocent thing. I look at you, your giant smile, your “lalalalalala”s, and it breaks my heart to think of what’s coming and you have no idea. We all know it’s the right thing to do, but I am DREADING the recovery. Trying not to think about it.

On a more positive note, we survived our trip to Clearwater Beach, Florida! You were a superstar on both plan rides, even if you were awake for most of the flights. Can I just say that WestJet is amazing for families?! They have won my business.

It was great to be with you in a warmer climate. You spent a lot of time in the stroller, both in the malls, Target, and of course walking on the Beach Walk and other places. One of my favourite outings was to the Tampa Aquarium. You were so engaged in the displays. You would look at a fish, make a noise and look at us with your eyebrows raised. We also took you to the Botanical Gardens and Historical Village, and took you swimming in the condo’s pool, although not the ocean because the water was only 61F. You loved having all that time with your dad, as well as with Grandma and Grandpa. Your parents enjoyed the occasional relief, and even got to go out for dinner a couple of times!

You came back more experienced with crawling (although it’s still an effort with some complaining on your part, but getting better), lots of practice walking, clapping and waving. Lalalalala and gagagagaga are a regular part of your daily communication, and I could swear I’ve heard the rare dadadada. You also cemented your love of books. You really love books!!

Today a day much like any other, but at least Dad is taking me out to dinner at Canoe in celebration of my birthday. (Mom gets a little attention, yippee!)