We're Here, We're Here

Ahh, summer. So much to do ... and then you get hit with the below-the-belt hit: a summer cold. It's so not fair! Why can't they stay confined to the nine months of winter when you don't mind staying inside by the fireplace? Yes, Scott and Annie have been under the weather a bit. One of the patients I can tote to the doctor and have checked out; the other not so much. (He did say that he "might" call the doctor tomorrow now that he's certain he has a sinus infection. We'll see if that really happens! And mind you, I took Annie to the doctor at his insistence, really. Our fabulous, marvelous, wonderful nurse practitioner said she doesn't mind seeing Annie anytime but thought we might be able to manage to listen to her lungs ourselves once in awhile. LOL Vicki, I'll buy a stethoscope, I promise!) Annie, unlike Scott, does seem to be on the mend without any real fuss (thankfully).

These days we are doing really well. All of the specialists (swallow, nutrition, PT, GI, etc.) have decided that Annie's food is safe for her once it has been thickened with rice or oatmeal cereal. It's working with her special bottle, so it's all good. The reflux medication seems to have helped with her spitting up, and her appetite -- even with the additional calories per ounce that the cereal adds -- seems to have increased a bit. (It seems like we teeter on the precipice of each pound marker. This month it's the 16 pound mark that we are awaiting eagerly. I weighed her this morning and she was 15 pounds, 15.5 ounces.) Meanwhile, we're working on feeding her by spoon as often as we can, so that we can get her the practice and move towards spoon feeding her everything. She is safer the thicker her food is, apparently. (The GI in Boston said things like "I don't know if it's safe to let you leave the hospital with her today" ... ugh! Luckily, things seem to have calmed down with the involvement of all the specialists.)

Oh, and the other thing we are doing these days is baby proofing. Annie is into everything! She has a determined crawl when she spots something new and exciting (still crawling army style, but is using both arms almost equally now). She loves emptying the bottom shelf of books and then eating their dust jackets. Alas, my Harry Potter books will never be collectors' items now. Other favorites include the tupperware cabinet, the bag of plastic recycling, and the ever-popular houseplant. She is pulling herself up on practically everything, including the couch, chairs, ottomans, toys, and cabinets. She has started to cruise a tiny bit and will even walk a few steps holding onto our fingers. She's so tiny that it looks comical, if you ask me. (Think Chucky.)

Jamie and Annie have begun to hang out in the living room together, which is fun. Jamie asks for me to put Annie in the living room with her first thing every morning so they can play or put on their "big kid talent show." I'm not close in age to my siblings, so the closeness of Annie and Jamie is a revelation to me. I can't help but hope that they will be close as they grow up (or at least after they both survive their teen years ....). So far, Jamie truly has been a model big sister. She loves Annie and wants to be with her "sista" ALL THE TIME. The only rough spot has been overexuberant love, especially now that Annie is on the go. I catch Jamie "helping" Annie to stand or moving her from one place to another. She thinks Annie is all set for playing and doesn't realize that she's still tiny and shouldn't be manhandled by a four-year-old! If Annie starts to cry at all, the first thing I hear if Jamie is innocent is "she just bumped her head! It wasn't me!" If Jamie is complicit ... well, silence on her end speaks volumes.

We'll be headed to see the cardiologist here in NH in a few weeks and Annie has her nine month check-up tomorrow. Other than that, we are blissfully free of doctors' appointments and happy to enjoy the summer again, now that Annie's little cold seems to be on the way out. I wanted to write and update because I had a few minutes. Thanks to everyone who wrote asking about the GI appointment!

It's a bit bittersweet, but the first photo I put on this blog was a photo of Jamie at soccer camp last year. Here's one from this year's camp ... wow, what a year. July 18 marked one year since our first fetal echo and the initial diagnosis of EFE. We wondered if we would ever even hold Annie in our arms and now she is a laughing, giggling, fabulous addition to our family. I'm grateful she's here every day, no matter what came with her. We can't imagine life without her, that's for sure. She is our happy, sweet, easygoing baby who wakes us up each morning with a big smile on her face. Now it's time to start planning that first birthday party!

(Other photos: We tried to get a good picture of Jamie & Annie with the blueberries we picked, but Annie was just too interested in grabbing those lovely blueberries!

Also, Annie hanging out at soccer camp. and Annie and Jamie playing in the living room.)

We'll Take It!

Long day in Boston and two kids need attention, so this is just a quick post to let folks know that Annie's echo today was good news. Boston got the same numbers that we saw at the last echo here in NH -- shortening fraction in the 21 - 24% range -- and they show a decent improvement in both the size of Annie's heart and the function. Overall, Dr. Smoot thought Annie looked wonderful and was pleased with everything she saw. (We hadn't seen Dr. Smoot since mid-April, so there was a huge change in Annie --teeth, crawling, squirming, etc.) The only change to her meds will be the long-awaited addition of a beta blocker.

Annie was super squirmy for the echo, but we were relieved to hear that Dr. Smoot doesn't want to sedate her in the future. Since the heart is getting better, she doesn't feel like we need to sedate her to have ultra-precise images. In general, they'll take the images they can get in between Annie's squirms. (At our last echo in Boston, they saved over 100 images throughout the echo. More than normal because Annie is in enrolled in a study surrounding echo techniques; still, they were doing the study again today and only managed to save around 40 images. Big difference in the squirmy girl, trying to eat the cord attached to the wand and kicking the heck out of the techs.)

Our GI appointment last week was another story, turning Annie's feeding upside down a bit (and adding a new med for reflux). Everything is still up in the air until we meet with the nutritionist and swallow specialist again next week, but for now we are trying to get Annie fed with milk that has been thickened with rice cereal. It can be tricky with her special bottle, so that adds an additional challenge. So far it hasn't been too bad and Annie has adjusted. And hey, it adds more calories per ounce!

Thanks everyone who kept Annie in their thoughts today! We feel like we can take a big deep breath after today ....

Swallow Study & Other News

Annie had a swallow study done yesterday at Concord Hospital. The nutritionist, physical therapist, and swallow specialist who met with us a couple of weeks ago had recommended we do the study based upon Annie's history and the way she sounds after she eats. Most of the time Annie sounds pretty junky and congested after she has eaten, so we weren't terribly surprised about the suggestion to do a swallow study.

The swallow study was very cool. (This is Annie sitting in the seat as we waited for the radiologist to come in and start the study.) It's a video x-ray, basically. They mixed barium into formula (they said they couldn't stand the thought of using Annie's breast milk and ruining it with the barium!) first, and we all watched on the video as Annie ate. Sure enough, you could see some of the formula starting to go towards her vocal cords and not straight down her esophagus. She did much better when they moved on to some thicker things -- a thickened cranberry juice and sweet potato puree that we fed to her by spoon.

We won't have the final report for awhile, but the preliminary report will be sent to the GI we are seeing in Boston this Friday. There is a decent level of concern about her eating now (yes, just as things were starting to go so well -- oy!) because of the risk that she could be aspirating milk into her vocal cords and lungs. I'm not sure what all of it means for the short term or for the long term, but I know we'll have something to talk to the GI about on Friday now!

Meanwhile, the swallow specialist has asked us to try thickening Annie's milk with pureed bananas or rice cereal or something and see how much we can get into her via spoon feeding. We'll give that a shot today or tomorrow for a 6 - 8 hour window. The question, of course, is how we can continue to maximize her caloric intake while making eating as safe as possible for her. Milk is the best thing for her, calorie-wise and nutrition-wise, so we'll have to work out if we can thicken it and spoon feed it to her efficiently. She has tried a few foods via spoon on a few different occasions, but she isn't used to spoon feeding. So, we have to see if we can get her to be more efficient with spoon feeding if we can get her more practice at it.

The only other news is that the next echo in Boston has been postponed from this Friday (when we had it scheduled to coincide with the GI appointment) until next Wednesday. Lucky us -- two trips to Boston within a few days. C'est la vie. I'm not complaining! We'll combine Friday's visit with a trip to Boston Children's Museum for Jamie ... we're still so darn grateful to be living close to Boston!

Otherwise, Annie is still doing GREAT. Her third tooth has popped through, she is able to push herself into a sitting position now (and launch herself back onto her belly to crawl wherever she wants to go), and she is still pulling herself to a standing position in the c0-sleeper (constantly) and pack-n-play. Her physical therapist said that if Annie were evaulated right now she probably wouldn't qualify for services, other than her feeding issues. She is really looking great and we are just so, so, so hopeful that her echo will reflect some positive changes, too. She was just a smidge under 15 pounds last time we weighed her, so her weight gain seems to be following her own little curve, too. (This photo is from the fireworks last night in Manchester.)

Thank you to everyone who has continued to follow Annie's story. I get nice little e-mails or notes from folks saying they continue to check the blog, and it is hard to describe how that makes me feel. It's as if we can feel everyone's support and encouragement, wrapping our little Annie in best wishes, prayers, and hopes. I knew there were some pretty amazing people in our lives, but the past year -- and it has been a year this month since Annie's in utero diagnosis of EFE -- has shown me that I really had no idea how amazing people can be! It has been a long year, to say the least. But there have been really incredible things that have come out in the past year, too. Family, friends, co-workers at BAE, co-workers at BYPC, everyone at Willow Bend, neighbors, and friends-of-friends top that list. Thank you.