Thanksgiving.

All my children are amazing. Each in their very own special way. Evie, she is an artist and a busy body. Always thinking, planning, doing something. Often involving excessive consumption of art supplies. But this Thanksgiving I was so incredibly proud of the way she put her talents to use. Her teacher had all the kids make a "Thankful Bowl" out of a tissue paper mache technique. It turned out quite beautiful in shades of red and orange. We took it with us to Thanksgiving dinner at my birth mom's house. We cut strips of colored paper and Evie went around and asked each person to write what they were thankful for and place it in the bowl. No small task since there were about 20 people there. Then she read them to the group before dinner as an alternative to saying grace which we never do in our non-religious group. She did a great job being brave and standing up to read them in front of a large crowd. I helped when she didn't recognize a word or couldn't read the handwriting. Everyone seemed to enjoy it and even get a good laugh out of it when one was read poking fun between cousins or when Adrian's was read saying he was thankful for his Pokemon book. It was a great idea and I think I might make that a family tradition.

There were many things I was thankful for this year but was only able to write 3 before Evie cut me off, saying that was enough, which I thought was funny. Apparently there is a limit on thankfulness. In particular I said I was thankful for three beautiful healthy children. I'm sure as my scroll was read there were some in the group who would question the honesty of that. But it is true. As far as children with major medical issues go Ainsley is pretty healthy. I am thankful that her airway condition hasn't worsened, caused her to need a ventilator and that she has not had frequent respiratory infections. In fact things have gotten much better for Ainsley over the past year.

Last Thanksgiving she'd just had double hip surgery and been placed into a spica cast which she wore for 3 months. She then wore a restrictive brace for 5 more months. Thankfully she is an easy going girl who handled the restriction with little frustration. Looking back I can hardly believe we made it through that time. She needed so much suctioning of the trach and had the vomiting issue on top of it. Positioning her was such a challenge. The special diapering and concerns about soiling the cast.....THAT is an amazing change, to be done with hip issues, what a blessing. Sure, we're still working on physical therapy but for the most part, we're done.

As a result of correcting her hips she was eventually able to learn to crawl in September! What an incredible change that has been! It is so truly beautiful and inspiring to see her work so hard to follow her brother and sister around the house. We are still in awe that she met this goal! When we placed in on her IFSP in June we really thought it might never happen. Little did we know she would amaze us by starting to crawl just 3 months later!

The trach and it's care, the cranial surgeries, the feeding issues, the eye issues, the concern about her brain development, the hip issues, the therapy it's all been hard, but the vomiting has been one of the hardest things to deal with. Every time it happened we knew it was hurting her airway (and that she'd never get the trach out so long as she kept vomiting), we were concerned she would aspirate the vomit and get pneumonia or lung damage, we had messes and laundry up the kazoo, and the frustration of knowing that she was losing calories and not maintaining an ideal weight plus the guilt when doctors and therapists would look to us as if we were doing something wrong. We made the decision to do a Nissen Fundoplication in October and have been very happy with the results (see prior posts) so far and are thrilled to see Ainsley have more energy and gain weight. She still has issues with coughing up secretions and it causing gagging and retching but at least the stomach contents are staying put in the stomach where they belong. We are having more challenges with oral feeding but I am hopeful that will come in time.

Many people give thanks at Thanksgiving for their health. Often people in hard times say "Well at least I still have my health, right?" as a sort of consolation. Few people truly understand what a gift our health really is. Having Ainsley, I KNOW that we are lucky that she is as healthy as she is and I KNOW I am blessed that my other two children have perfect health. Appreciate your own health and be truly thankful.

One Month Post Nissen- All Is Going Well!

Today it has officially been one month since Ainsley's Nissen Fundoplication and she is still vomit free! We followed up with the surgeon Wednesday and have been given the okay to transition back to regular feedings over a 2-4 week period. Feeding her 50ml of formula every single hour 24 hours a day has gotten old! Still, we want to take it slow so we don't over stress her stomach and cause retching that might risk breaking the wrap. We'll gradually add purees again (hopefully that will eliminate the stinky poo problem) and spread the daytime feedings over longer periods, increasing the size of the feeding and gradually reducing the night time drip of formula until we no longer have to use the feeding pump at night.

We will not know how successful the surgery was until she is on her normal feeding regimen. I feel pretty good about things though and hope that she will still not vomit or reflux even when she is getting her normal 8oz size feedings 4 times a day. And that it won't cause retching when we do. We have seen some retching and it's hard to watch. We don't want her to do too much of that for fear it could loosen the wrap. But the times that she does retch I believe are appropriate and she would have vomited without the fundo.

Amazingly Ainsley has gained almost 3 pounds since the surgery!!! She now has a nice little amount of chub on her tummy and legs. There is now no doubt the degree to which this vomiting issue or reflux was causing problems for her, especially in regard to her weight. She has been considered underweight even though she was on a whopping 1200-1300 calories a day. She's gained so well on 1200 a day since her surgery that the dietician has approved for us to reduce her calories to 1000 per day. She seems to have more energy and is getting stronger, even starting to pull herself up in the kneeling position. I suppose because she's retaining more of her nutrition and she just feels better.

And best yet. We had an appointment with her otolaryngologist(airway doc)on the 10th. Less than 3 weeks post surgery the scope showed a decrease in her airway swelling. We had noticed almost within a week of the surgery that she started making more sound and was better able to tolerate her PMV (speaking valve). She wants Ainsley to be able to wear her PMV all the time consistantly for 3-6 months even when sick,except while sleeping. I'm not sure if she will be able to with the trach cannula taking up some of her airway, and the granuloma that she has, as well. Sadly we discovered that her otolaryngologist is moving to the East coast at the end of November. So it was fortunate we got to see her one last time and say goodbye. Dr. Chen saw Ainsley's airway a few days after her birth when there wasn't any significant swelling, she performed Ainsley's tracheotomy, performed several laryngoscopies/bronchoscopies as well as scoped her multiple times in the office. As one of her tough airway patients she would like to know what caused Ainsley's airway swelling and suspected reflux played a role. We hope she will keep in contact through Ainsley's blog. We have a good replacement doctor taking over. The plan is to see him in late January. Here's a video from the scope.


On the down-side the reduction in swelling opens up the airway for aspiration and potentially lung damage from that. So we'll be watching her carefully and hoping for no increase in respiratory infections. I thought she'd perhaps start eating but she seems even less interested than in the past. Maybe with time once she's better able to protect her airway.

Unfortunately Ainsley caught a cold and developed some nasty granulation tissue on her trach stoma last week and that was causing her some serious difficulty for awhile.

We used Tobridex drops and switched to a Neo length trach temporarily and that seemed to help. She's finally smiling again and getting back to her normal activity level. It would be nice to be able to take her to therapy/school. Especially since she's doing so well with her PMV, even the unmodified one. I'm hoping we'll be able to get back to using it as much of the day as possible. It's been really great that she's been able to tolerate it so much better. We've even been able to hear her laugh a little which was beautiful! I tried to shoot a little video. It's not great, but gives you an idea of how she's doing with her PMV. Still not very loud or clear but better. Small steps.

Happy Halloween!

Click Here For the Entire Halloween Week Slideshow at Shutterfly: http://cmd.shutterfly.com/commands/pictures/slideshow?site=ainsleyspics&page=ainsleyspics&album=283

I hope everyone had a Happy Halloween! It was a hectic week with Steve having a major work deadline (and working until 2am many nights) the week before the holiday. But somehow we managed to pull it all off. We made it to the school Barns & Noble bookfair. Surprised Daddy with a new Hermoine hair-do. Had costume day at ballet class and preschool. We squeezed in some fun carving pumpkins at a friend's party. On Halloween we made chicken alphabet soup in a pumpkin and cemetery "dirt" cake (since I'd promised the kids we would but didn't have time to do it earlier in the week as planned). We all Trick-or-Treated around the neighborhood for about an hour. WE DID IT! Phew! Thank God my sister Sheryl was here Halloween night to help us pull it off and hand out candy while we were gone. It looks much more fun and relaxed in pictures than it was in real life.

This year the whole family dressed in Harry Potter costumes: Evie was Hermoine, Adrian HP himself, Steve was Professor Dumbledore (he forgot to wear his glasses, oops), I was Professor McGonagall and Ainsley was Harry Potter's owl Hedwig. She cried because she hated the hood but stopped after about 5 minutes. At least she was toasty warm outside in the cold. Steve and I would normally NOT dress up for Halloween. But, Evie has been obsessed with Harry Potter all summer (complete with life size paper HP decorations all over the house e.g. see Jenny on the bathroom floor picture) and has been talking about dressing as Hermione since then. So somehow she badgered us and pleaded enough to convince us to do it. In the end I'm glad she did even though it was a lot of trouble just for trick-or-treating (and of course the picture my reward).

This Halloween Ainsley was uncertain about the whole costume thing. We started trying them on earlier in the week. It took several days seeing me dressed up for her to start to get that it was still me under the granny wig and witch hat. She would look at me with the funniest expression like, "What is going on? Who is that? What did you do with my mommy? Should I laugh, cry or be scared?" I SO wish she could talk so I knew what she was thinking. She's a pretty go-with-the-flow kind of gal so luckily she got over the owl costume pretty easily and then seemed to enjoy the walk around the neighborhood in the dark trick-or-treating but the real fun for her began when we got home, took off the costume and she got to play with the kids' candy all laid out on the carpet. I guess that's the best part for all of us, really. Evie and Adrian ate enough chocolate to make them sick but Ainsley's treat of the night was her sweet little feet.

Ainsley Turns Two

See the whole birthday slideshow at: http://cmd.shutterfly.com/commands/pictures/slideshow?site=ainsleyspics&page=ainsleyspics&album=160

We were excited this year to have a low-key birthday celebration for Ainsley on the 18th. Sure we'd considered having a party. We did the big party thing for her first birthday because that's what you do on a first birthday. It was a great party and a perfect way to end a really remarkable first year. But at age 2 it seemed to me that she would most enjoy being with her family doing something fun. I decided to throw caution to the wind and take her to the Seattle Science Center despite the chance she could pick up a bug and we'd have to reschedule her surgery that was only 3 days later. We used lots of hand sanitizer and thankfully all went well.

Ainsley's birthday started out with a special dance performance by Evie. And the presentation of some hand made cards. Our usual Saturday ritual of coffee in bed with the kids making a ruckus in the bedroom. Finally we headed out to the Science Center. We hadn't been there since Evie and Adrian were much smaller. This was the perfect age to take them. They were so curious about all the little mini experiments. Being someone who is curious and likes to learn I also had a great time. My favorite was the giant zipper. I've had more than one stuck zipper in my life and had always wondered what the heck the problem was. What's to go wrong with something as simple and low tech as a zipper, right? And yet it happens. Apparently all the teeth have to be exactly perfect to fit through the slide at exactly the right angle to mesh the teeth together. If one tooth gets slightly bent it throws everything off. I also marvel that such an everyday object that we take so for granted as a low-tech no-big deal thing was only invented in the last century. The precursor to the zipper in 1892 but the zipper as we know it was patented in 1906 and further refined even later that that. Even the automobile was invented in 1889. Interesting isn't it, that it took man longer to invent the zipper than the automobile? Well anyway......

We also enjoyed testing our grip strength, testing our pitch accuracy, testing the gravity of cantilever, testing our vision (I REALLY need my glasses.), seeing how much electricity a lightbulb or two uses, taking pictures of the dinosaur robots (unfortunately the low light "broke" my fussy expensive camera >:( ) , we saw the butterflies and finally the main attraction for Ainsley, the toddler water play area. Sadly despite a nap in the stroller she was pretty tired by then so it wasn't quite as fun for her as I'd hoped. Still it was a great day out with the kids. I tortured Ainsley by making her wear a jeweled crown to denote her as the birthday princess. As usual we stayed until it closed before we headed home.

Adrian played with Ainsley on the floor while Evie and I got her gifts together. She just loves Adrian to bits and he loves her. I wonder if they'll always be close. All three of them really. She's lucky to have such a great brother and sister who love her so much. I'm always amazed at the grace with which they've accepted her as one of them, no different in any way.

We decided that a dinner at home was best for one who doesn't really eat. We ordered a pizza. Like every night Ainsley sits at the table with us in her highchair. She's gotten pretty funny over the last month or so she demands food. We often give it to her but not always. Well now she actually gets mad if you don't give her some. She plays with it and sometimes brings it to her mouth. I gave her a pizza crust and she actually brought it to her lips and appeared to taste it (more of a lick than a bite). THEN she proved to us that she turned TWO and looked me in the eye and hung the crust over the highchair and smirked and dropped it. I pick it up and give it back to her and she does it again....and again. I know this is ordinary two year old behaviour, but it's the first time I've seen her deliberately throw food. Thankfully it was a pizza crust and not my chicken paprika or something equally messy. I was thrilled.

We opened some presents. She had to have a lot of help from her brother and sister but they were happy to oblige. She got an adorable little woodland cottage with magnetic critters. I thought she'd love it and she did. Phew. It's hard to buy for a child with limited play skills and two older siblings that already have a house full of toys.

We finished up with some lovely cupcakes from Macrina. Ainsley licked a little frosting off her finger before she pushed it away. Maybe next year she'll actually eat a bite of cake. I can dream.

She's Smiling and Vomit Free

Before the surgery. The scar is from her gastrostomy.


Clearly in a lot of post surgery pain despite the morphine.


The incision is 3" long and goes over the gastrostomy scar. They use dermabond instead of stitches to close it. I think it looks amazing for the first day!

Refusing to smile no matter what.

Even for her favorite visitors.

The great news is that we finally started seeing her beautiful smile yesterday. That is the best and such a relief! Since the surgery we've had about 8 incidents where she coughed up some secretions and it caused her to wretch. Most likely the majority would have ended in vomit in the past. And a couple where they were so forceful her face turned almost purple but still there was NO VOMIT. So I'm feeling pretty confident that the surgery was successful! She's taking small feedings once an hour so there will be the hurdle of transitioning her back to her regular feeding schedule. But so far we have not seen any of the terrible side effects that can accompany a Nissen.

Here's a link to info about a Nissen fundoplication and how they work: http://en.wikipedia.org/wiki/Nissen_fundoplication

We're Home!

Yea! We made it home about 6:30. Had a hodge-podge dinner of left-overs. And are back to life as normal. You would hardly know that Ainsley was in the hospital on morphine just this morning. Evie's doing homework, Adrian's kicking a ball around the house, I'm on the computer and Ainsley is in the living room on hands and knees playing with the toys she got for her birthday less than a week ago. She still will not smile no matter what we do which, as you know, is unusual for her. Poor thing must be in a lot of pain still but she's persevering. I'm sure it'll be better tomorrow.

Edited to add: I guess I missed some details. What I think happened was that she was having excess gas due to the anesthesia and surgery and it was causing the intense pain spikes yesterday. Yesterday evening instead of doing continuous feedings we did gravity boluses and setup a g-tube extension and open 60ml syringe to vent the g-tube. It immediately seemed to ease the pain and we were able to gradually reduce the morphine and transition her over to oxycodone by 2:30. Overnight we switched to a continuous drip. In the morning, rather than doing the continuous feedings that the surgery resident recommended, we continued with boluses and continuous venting and got her up to her goal of 50 ml per hour by 4:45. That was the magic ticket for coming home, off the morphine, IV and at full feeds of 50 ml per hour.

Post Surgery Update

Ainsley has still been in a lot of pain. I'm sure the incision is very painful so it's difficult to tell if it's that, or if it could be gas, now that her stomach can't relieve any built up pressure. I'm not sure where the day has gone, we haven't made any progress on the feedings and at 2:00 they had her at the whopping rate of 5 cc per hour. Good grief. It might evaporate by the time it gets through the line. They only want to up the amount by 5cc's every 4 hours. So for us to get to our goal of 50 cc's per hour will take a day and a half if it goes perfectly. The surgeon who said we might go home today is going back to his standard response of the average recovery takes 3-5 days. I'm still optimistic and hope she'll bounce back over the night and get discharged some time tomorrow.

Sadly, she's pretty unhappy. I bought her a little doll that giggles in hope that it would cheer her and she barely looked at it and didn't even crack a smile. She isn't interested in playing with anything even just to chew on it. We had some bad gagging episodes where she tried to vomit and wretched instead and her head turned a really deep shade of red. Followed by blood tinged secretions. I'm just hoping that she'll figure it out over time so that won't continue to happen. It really looked excruciating. The surgeon said there will be swelling of the stomach for a month. And that it will take a little time for her to adjust to swallowing and managing her secretions. I have to remember that. It'll take at least a month to see the outcome of the surgery. At least a month. At least a month.

Steve will bring the kids to the hospital to visit tonight. I can't wait to see them. Unfortunately we lost our roomie and have a new child arriving while I type this. Cross your fingers that we get an easy roommate and that Ainsley starts feeling better so we can get out of here.