Ups and Downs

If something wasn't going to be good news, I'm glad it's the swallow stuff and not the heart stuff.

We had Annie's second swallow study done in Boston on Monday. She has sounded great lately (no "wet" sounds after eating) and really seemed to be doing well when eating, so we were hopeful that the swallow study would be normal (or nearly there). Unfortunately, it was not better than the last study -- if anything, it was worse. This time, Annie did aspirate clearly at least twice (whereas last time she didn't clearly aspirate, but was said to be at high risk for aspirating). So, thin liquids (normal liquids for the rest of us) are still not safe for her to ingest. We can continue feeding her the thickened milk that we are giving her, thankfully, since she handled thickened liquids well.

The downside is that the ENT told us that he would take Annie into the OR to probe the back of her throat if this study wasn't normal ... which clearly, it wasn't. (We don't need to see the report to know that!) We don't have the follow-up with the ENT until the middle of November, but luckily we were allowed to go forward with what we have been doing (thickening her milk) and weren't sent into panic mode or G-tube mode.

It was a letdown to hear the news, but like I said ... if one thing has to go south, I'd much rather it be the swallow stuff than the heart stuff. Still, we hoped for better news and hoped not to have an OR visit in the near future. I thought I had prepared myself for the news, telling everyone that Annie had to be sedated one way or another (for the CT scan of her nose) so it was no big deal if she had to do the OR visit at the same time. Secretly, I was sure the news was going to be good and that we'd be fine. I was bummed ... but then Annie's wonderful physical therapist snapped me out of it and put it in perspective. She is the one that pointed out that we were home and not admitted to Children's in preparation for the placement of a feeding tube. Oh, yeah. Be grateful that we've gotten as far as we have ... and, my new mantra: it's not a heart transplant. It's not a heart transplant.

Meanwhile, it is difficult to remain bummed anyway, since New Hampshire has put on the dog and is gorgeous beyond belief right now. Every fall it strikes me that I live in NEW ENGLAND now (going on eight years now, unbelievably). The colors are simply amazing! And thank you, Scott, for patiently taking me leaf peeping every year ... despite the fact that you are totally red/green color blind and see little of the beauty! I only hope some of the color remains through next Tuesday, when my parents arrive. Almost eight years here and my parents never have been able to experience a beautiful New England fall. (Last year they missed out because they had to come at the very end of the color ... but just in time for Annie's debut. Really? Is she almost 1? In some ways it seems like it has been years since she was born ....)

Oh, and I almost forgot! Annie decided to take about six consecutive steps in the radiology waiting room before the swallow study! She first rolled over when she was a patient at Children's last February, so I guess she has decided to mark milestones there .... Whatever the case, there was a time when we weren't certain that she would walk anywhere near her first birthday. Go, Annie! You amaze me, Bug.

P.S. All you have to see in the last post (Annie's EF Graph) is that the latest echo, Echo #4, fell between the two lines representing the normal range. Sorry I didn't clarify that before!

Annie's EF Graph

I've looked at this about 100 times in the past couple of days!

GREAT NEWS TODAY!

It was a terrific day in Boston ... so terrific that I virtually am at a loss of words. Thank you to everyone for support, prayers, hugs, and encouragement that have gotten us through this week! (And extra special thanks to Jennie and Emma for taking on Jamie all day so we could focus on Annie while we were in Boston. Thank you so much, Jennie!) We are happy to have good news to report back to everyone.

Normal. Annie's Ejection Fraction (percentage of blood in the left ventricle that is pumped out to the body with each compression of the muscle) has entered the normal range. Her EF has been as low as 28%, but today it was measured at FIFTY-SIX PERCENT!!!! It was INCREDIBLE news since the normal range for EF at Annie's age is anywhere from approx. 50% - 70%. This is the first time any of the heart measurements they take (size of the heart, ejection fraction, shortening fraction, etc.) has fallen into the normal range. (The doctor reviewing and finalizing her echo report actually paged Dr. Smoot while we were still in with her going over the preliminary reports. He wanted to know what Dr. Smoot's secret for Annie's drastic improvement was! His input also meant that we could consider the numbers as finalized and not just preliminary.)

All of the other measurements that they took during Annie's echo also improved and continued to trend towards the normal range. Dr. Smoot was very happy all the way around and moved us officially from "cautiously optimistic" to "justifiably optimistic." Kids have trended this way in the past, only to lose some function later -- so we are by no means out of the woods. However, Dr. Smoot is encouraged by what she has seen over the past several months and told us that Annie's age is further reason to feel optimistic. She said that many dynamic things happen with children's hearts in the first year, and they can do amazing things. The fact that Annie has trended upward and gone through all of this in the first year of her life is actually a positive sign in the world of cardiomyopathy!

More great words to hear: Annie's diagnosis will no longer include "Failure to Thrive" because it no longer applies to her. (Dr. Smoot kept calling her 'Fatso' today and oohing over her big belly. Who would have ever thought we would see that day?!?) Dr. Smoot also said that medically speaking, nothing can be 'blamed' on her cardiac function at this point. Her heart function is NORMAL, so it won't be considered the basis for anything else that goes on with her (but let's just assume nothing else is going to go on with her, thank you very much).

Annie was a charmer throughout, acting as official greeter in Children's lobby by waving at each and every person who walked past us for an hour or so. She was squiggly for the echo, but they were still able to get all of the measurements they needed as well as the images necessary for the study Annie is enrolled in. She was all smiles for Dr. Smoot, as Dr. Smoot tried to chase her around the examination table to examine her. Not even the news that we needed to do a blood draw could phase us today! Annie was a little put out with having her arm restrained, but forgave everyone as soon as a sticker was proffered.

And now I am going to collapse and sleep the sleep of the VERY RELIEVED MAMA, snuggled between my two girls. Thank you again, everyone who has asked about today and offered their words of support. It is wonderful to be able to share some good news. Happy, happy weekend, everyone! And, oh what a party we are going to have on November 3!!!!

Just Some Pics

The echo is this Friday, and that is occupying all of my brain power right now. I'll post as soon as we can Friday night, since we'll more than likely get stuck in Boston traffic on the way home. Meanwhile, I just wanted to share some new photos. Oh, and we're looking forward to seeing so many of you at Annie's birthday party! Thanks so much.

Doesn't Seem Abstract ... Seems Pretty Clear

Just when you think it's ok to do some more research on-line .... Here's the abstract to an article I saw last night (I'm trying to get the full article):

"Heart transplantation is usually utilized in pediatric patients with dilated or restrictive cardiomyopathies, or in patients with hypertrophic cardiomyopathies with the hemodynamic characteristics of dilated or restrictive cardiomyopathies. Pediatric Cardiomyopathy Registry (PCMR) data suggests that transplantation is utilized in patients with idiopathic, familial, or myocarditis dilated cardiomyopathies to a greater extent than in dilated cardiomyopathies observed in malformation syndromes, inborn errors of metabolism or neuromuscular disease. Single and multicenter studies suggest that lower left ventricular ejection fraction at presentation is associated with a greater likelihood and a diagnosis of myocarditis to a decreased likelihood of heart transplantation respectively. International Society for Heart and Lung Transplantation (ISHLT) data demonstrates cardiomyopathy is making up an increasing proportion of heart transplantation in infants.

PCMR data suggest that the overall freedom from death or transplantation in patients with pediatric dilated cardiomyopathy has changed little in the past 15 years. However, survival after pediatric heart transplantation has improved over the same time period. Two single center studies have found that while survival with pediatric dilated cardiomyopathy has improved, the freedom from death or transplantation is similar to survival in pediatric dilated cardiomyopathy prior to the routine use of heart transplantation. Furthermore, these studies could find no impact from new medical therapies on transplant-free survival. These findings suggest that heart transplantation may be the most effective therapy for improved survival in pediatric dilated cardiomyopathy. " [Bold mine.]

Ugh. On the positive side, Annie was young at diagnosis. On the negative side, hers (so far) has fallen into the idiopathic (no known cause) category.

On the positive side, Annie is rolling all over the dog bed as I sit writing this, laughing and giggling like a loon. She's practically doing somersaults!

October 12 and the first echo since starting beta blockers can't come soon enough.

ENT Excitement

Annie had an appointment with a pediatric ENT at Children's this week. After a wonderful, leisurely, relaxing drive down to Boston in the rain (ha ha ha!), we met with the doc's assistant. She took Annie's history and then warned us that the doctor probably would want to put a small camera down Annie's nose to take a look. "Kids usually cry," she said. "But that's good. It opens everything up and the doctor can see things better."



"We'll see," I thought to myself. They said the same thing before the chest x-ray several months ago, and our sweet, easygoing girl didn't let out a peep. I didn't say what I was thinking out loud though, thinking that maybe I'd be wrong and this time she'd find the test objectionable. She's older now, after all. She has definitely found her voice ... like when you take something away that she wants to play with!


The doc was nice. Soft spoken and thorough. (We were told by the swallow specialist up here that he was the best. I think she was impressed that we got in to see him so quickly. Thanks, Dr. Lightdale!) As reported, he wanted to take a look at Annie's throat with a small camera inserted in her nose. They had me hold Annie on my lap, facing the doc, and holding her arms down. (Oh, boy.) Our little trooper didn't let out a peep -- not when the camera went down the first nostril and not when it went down the second! When I turned her back to me (after it was done), her eyes were all watery but that was it. What a girl! And you should have seen the smile she bestowed on the doc when he handed her a sticker! You could tell all was forgiven.


Long story short ...

1. Annie needs to have a CT scan of her nose/head at some point. There's no rush on this, but it needs to be done. It turns out that the dimple in her nose could be indicative of a problematic condition. Neither Scott nor I can remember the name, but it involves skin being in the nose as opposed to just cartilage. It can be seen as a dimple in the nose or in other ways. (The questions for which prompted me to tell the doctor that the dimple in Annie's nose didn't represent an unborn, parasitic twin!) A CT scan will need to be done at some point to rule out any complications from her ... yes, from her DIMPLE. :-) Bad news is that a CT scan will require sedation. Sigh.


2. We'll repeat the swallow study in Boston next month, mostly because we believe Annie's swallowing skills are headed in the right direction. The doc is going to give her a chance to prove it by doing another swallow study and comparing it to the one we did in July. If this study is normal, we go on our happy way. If it's not, we head to the OR (and sedation again) for the doc to take a better look at Annie's mouth/throat/vocal chord construction.


She really sounds better ... so here's hoping the swallow study next month will reflect that! Meanwhile, the countdown to the last echo of the year has begun. (Translation: I can feel the butterflies in my stomach already.) Less than one month until that day .... I hope it will contribute to a BIG celebration at her birthday party on Nov. 3!!

Cardiology Appointment 8/30

Just a quick note since I mentioned we had a cardiology appointment in the last blog entry. We saw Dr. Johnson here in NH on Thursday and he checked Annie out. Dr. Johnson hadn't seen a copy of the report from our last visit and echo in Boston, so we updated him on the latest echo numbers. He thought Annie looked great and was glad to hear we started her beta blocker and she seems to have handled the additional med relatively well. (She's spitting up again, which we learned can happen with beta blockers. The GI increased her reflux med a tiny bit to see if it helps; otherwise, we may have to try another beta blocker. We don't want to see her lose ground after the past few weeks -- when she seems to have gained weight more easily than she has in the past. Not exactly quickly, but at least more easily.) He opted to increase her doses on the other meds to keep up with her weight as well. She was 16 pounds, 14.4 ounces and 27.75 inches by their measurements.

Dr. Johnson won't see us again until December -- and they weren't even able to schedule the appointment that far out. That was a first ... a happy first! We're back to Boston on Sept. 11 to see the ENT and then on Oct. 12 to see Dr. Smoot again. As it stands now, October will be Annie's only other echo for the rest of the year.

Oh, and she's ten months old today! Can't forget that. She had a great time both days at the beach this past week. My mother's response to this photo, though, was "please don't feed my grandbaby sand!" We don't feed it to her, Mom. Quite the opposite. I can't keep her away from the stuff!

Happy holiday weekend, everyone!

Cruisin' Along

Annie is cruising like crazy! She really looks strong and great. I weighed her a couple of days ago here at home and she was just about 16 pounds, 13 ounces. Wow! We're headed for 17 pounds in what seems like the blink of an eye. (I say she was "just about" because she is pretty squiggly for the scale here at home. It's a decent baby scale, but she just doesn't sit still for a second these days.)

More good news today from Annie's physical therapist and the swallow specialist. We were meeting with them today to follow-up on everything, especially after the alarm felt by the GI a couple of weeks ago. Annie had an audience once again as she ate ... but this time, we weren't hearing any congestion or "wetness" after she ate! That's great news! I feel like I haven't heard her sound junky after she has eaten for the past several days, and it was great to have the experts say they didn't hear it today either. The physical therapist even said Annie sounded better just in the past week. She also continues to improve her spoon feeding capabilities and continues to try new foods, so it's all good news.

Tomorrow we have an office visit and EKG with the cardiologist here in NH. We hope (hope, hope, hope) to get more positive news tomorrow, even if it's not an echo. Then we're headed to the beach for the second time this week, trying to soak up the last gasps of summer up here in New England. (Meanwhile, I'm happily busy planning the big birthday party! Mike Morris will be performing for the kids (but he's great fun for the adults, too). Check him out at http://www.mikemorris.us/. )

Photos are from a summer visit with my nieces, Ella and Evie (Lori's girls). Annie took a break in the middle of our visit to the park and the girls had fun decorating our driveway. Annie certainly was enthralled with all the activity while the girls were visiting. It was a cousin-fest of girls!

Happy end of summer and start of school, everyone!

SAVE THE DATE! November 3, 2007

You (yes, you if you are reading this blog!) are invited to help us celebrate Annie's first birthday. It will not only be a celebration of Annie's first year, but also a celebration of the friends, family, nurses, doctors, co-workers, friends-of-friends and everyone else who has played a role in Annie's life and our life. It will be one big shindig to say thank you to everyone for the support, love, meals, shoulders, gifts, and encouragement that has been shared with us as we have ridden the diagnosis roller coaster with our little Bug.

So, please mark your calendars for Saturday, Novemberr 3 from 2:00 - 5:30. Details to follow. We hope to see you ALL then!

No Time to Write

I have news, but not enough time to write all about the dramatic day we had today. The bottom line is I think it all has worked out for now. We'll be visiting a pediatric ENT at Children's sometime in the next few weeks as a result of several conversations today (GI specialist, Annie's primary doctor, physical therapist, swallow specialist and cardiologist). Stay tuned ... her heart may be headed in the right direction, but we've been thrown a bit of a curve ball on her feeding issues. Again, I think it has all been worked out for right now and we're just going to keep doing what we've been doing (thickening her milk with rice cereal while trying to get her some practice with spoon feeding). It was no fun having talk of an NG- or G-tube again today, though!

In lieu of a more detailed post, here are some new pics! (Check out all the new teeth in the first photo from the beach.)

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.

Summer's Here!

We have been busy enjoying summer around here! The weather has been gorgeous -- Annie even got her very first full day at the beach this week. My mother is here now keeping both girls occupied, so I have a few minutes to post.

Annie saw our NH cardiologist right before the Easter Seals Walk on June 7. It was just an office visit (no echo or EKG) to check in, and he was pleased with everything he saw. Annie looks great and seems to be doing really well. Dr. Johnson did increase Annie's digoxin levels, since we never got that done with Dr. Smoot. He also gave us a last minute donation for our walk -- thank you, Dr. Johnson!

The walk was a wonderful time with good friends. The weather held out for us and we enjoyed walking and chatting, even though we were novices and ended up at the very end of the pack. (We'll know better next year!) Thank you again to everyone who donated! We raised close to $3000 when all was said and done. Special thanks to our friends Grant and Sheila who raised several hundred dollars on their own -- all in Annie's name.

Little Annie has been doing amazing things lately. Her gross motor skills are doing great these days! She is pulling herself to a standing position in the co-sleeper and the pack-n-play, crawling (still on her belly, army-style) all over the place, and generally just doing great. We just finished meeting with the nutritionist and swallow specialist (along with Annie's regular physical therapist) and it was more good news. The nutritionist took all kinds of measurements and said that Annie's fat stores are actually quite good. That's a relief, because if we head towards any surgeries she'll need some reserves to get her through.

I had to answer questions for the nutritionist and OT in two different ways: before four days ago and for the past four days. That's because Annie has been very different for the past four days -- suddenly taking over her feeding and just guzzling her bottle when she puts her mind to it. She isn't getting that much more over the course of the day, but it is so much easier to get it into her all of a sudden. I don't know what's going on, but I'm thankful for it! I'm also hopeful that her eating better as well as the leaps she has made with her gross motor skills somehow translate into her feeling better or her heart doing better in some way. I hope, I hope, I hope.

Scott has been crazy busy for the past month, so we have been fitting in life around his work schedule. Jamie wrapped up her school year on June 15, so she is out of school now. Scott is in California this week, so Mom is here helping out (thank goodness!!). We are enjoying the first day of summer and we're on our way out the door now to go strawberry picking! Take care, everyone. Happy Summer!

(Photos are Annie playing on the floor; showing a propensity for following in her sister's footsteps and eating all the sand she can get her hands on at the beach; and crawling under her mega-saucer.)

Easter Seals Walk

(Hint: Read the onesie!)

Easter Seals Walk is Tomorrow!

It's not too late to donate! And THANK YOU to everyone who has donated so generously in Annie's name already. We have raised almost $2000! We are looking forward to walking with some friends tomorrow night and enjoying a nice night in downtown Manchester.

Annie has a bit of a cold (and I seem to have gotten it now, too -- oh, joy), but her lungs were checked today and we should all be good to go tomorrow night for the walk. Annie was just under 14 1/2 pounds on the doctor's scale yesterday, gaining just about half of a pound in the past three weeks. It doesn't seem like enough, but everyone keeps telling us that at least she is gaining. It is forward movement, even if it's at a snail's pace.

What's not at a snail's pace is ANNIE! She's really on the move, able to do the army crawl now on her belly. Strength-wise she seems to be doing really well, which is wonderful news. And have I mentioned lately how happy this kid is?? She is, honestly, the happiest baby I have ever known. She has a funny laugh that is all her own (one of these days I'll get it on video and get it up here) and very infectious! I am so grateful that she is such a happy kid and makes us laugh out loud multiple times each day.

We'll post some photos from the walk ASAP, but in the meantime here are a couple of recent pics. The first is a photo of Jamie reading to Annie. Annie has a serious paper addiction and just wants to eat anything vaguely resembling paper, including books. We leave quite a mess at the doctor's office, too, since she finds the paper on the exam table totally and completely irresistible. (Sorry, Willow Bend! I'm trying to wean her off the paper fetish.) The second photo is another "Dressed by Jamie" photo. Apparently, Annie's coronation has taken place thanks to big sister.

"Holding Her Own"

I realize that Scott and I sound like a broken record now when people ask us how Annie is doing. "She's holding her own" is our standard, oft-used response. It's so difficult to explain to everyone the waiting game that we are in right now. We are just waiting from one echo to the next, hoping upon hope that her heart will continue to improve. Cardiomyopathy in children is so complex and so little is understood about the path it will take in each individual child that no doctor -- even the wonderful ones at Children's -- can predict what the future holds for Annie.

Further complicating our ability to respond to questions is our history riding this roller coaster. Namely, we have been down the path of improvement before. Last summer, as we went from fetal echo to fetal echo, the news slowly got better and better until the last visit (or so we thought!) to Children's when Dr. Levine told us she didn't need to see us again before Annie was born because the thickening was virtually insignificant. So yes, we are so happy that Annie's last echo seemed to show some improvement. But, it is impossible to shout about it from the rooftops. Last summer's experience, culminating with Annie's initial diagnosis with cardiomyopathy in February and the whallop that gave us, has brought new meaning to the term "cautiously optimistic." We are more than cautious about any bit of seemingly good news we receive about Annie now.

On the other hand, I don't want to sound like we are completely down in the mouth about everything and not willing or able to accept good news when it comes our way. I don't want people to feel like they can't ask about Annie for fear that we will sound very negative or down about everything. We definitely are able to take in good news! There is no way to keep our hearts from leaping when any of Annie's doctors find something to be pleased about with her progress, whether it's heart-related or muscle related or ANYTHING at all.

Hence the phrase I recently have realized that Scott and I both cling to: "holding her own." You may have heard it from one or both of us if you have asked about Annie recently! I hope it is an acceptable middle ground that balances our optimism with the reality of what we are facing or may face in the near future.

Right now, we are celebrating our sweet girl and every healthy day we have with her. We are grateful that she is as healthy as she is and that we have not had to face heart failure, extended hospital stays, or the transplant list. The cardiomyopathy foundation's list serve is full of families who have lost children or whose children have been transplanted or spent months upon months in the hospital. Each story reminds me how lucky we are that Annie is ... holding her own.

Happy Holiday Weekend!

Just wanted to say hello because I haven't posted in a couple of weeks. Where those weeks have gone, I have no idea. We are chugging along with good days and bad days. I have a wonderful friend who is now helping with Annie and Jamie a couple of days a week, giving us some breathing room and ensuring that Annie gets fed while I get some work done or fit in a run or whatever. (Thank you, Sheila! We're so, so grateful to have you in our lives!) I've started doing some more things for BYPC (Jamie's school and where I've been working a few hours a week for the past couple of years) and it's great to see everyone in the office regularly again.

Annie is doing well and seems to be enjoying our summer weather. Or, at least she looks darn cute in her summer clothes! Not sure how she's going to handle the heat since that is an issue with cardiac kids, but we're likely to find out today with temperatures soaring into the 90s. (Me: It's going to be the hottest day all year today. Jamie: Wow. That's a lotta hot!) She seems to be getting stronger all the time, and she definitely is doing more and more. Her new favorite thing is the jumpy seat thingy (the kind that hooks over the doorframe). She jumps like crazy, laughing the whole time. The trick is keeping the dogs from kissing her the entire time!

Annie continues to give us a run for our money with eating, though. It is so frustrating! I'm guessing it's teething, but we have had a few days where it's 5 o'clock at night and she's only had 8 or 10 ounces all day. It feels like we're torturing her with food sometimes. She's gotten to the point many times throughout the day that she'll start crying if you just lay her back in your arms. She knows either food or medicine is coming, and she doth protest!

Our appointments in Boston have all been moved to July (the GI doc had to move that appointment, so Dr. Smoot moved our appointments with her as well -- no big deal since we just had an unplanned echo a couple of weeks ago). I honestly don't know what to think about a g-tube for Annie. I can't even imagine going through the surgery and all of that, but it would be such a relief to be able to get food (and now the meds that she is often spitting right back out) into her. I don't know if we're at that point though -- Annie is still on the charts and seems to be following her own curve. It seems to me that she should be eating more (hello! she weighs almost 50% more than she did at diagnosis, yet she's taking in fewer ounces), but somehow she is maintaining that curve. Hopefully, teething won't throw her off that altogether. Looking back, I think she's gained about 8 ounces in a month. She's a whopping 14 pounds 3 ounces now ....

So we'll see what everyone in Boston has to say, but not until July 6. We'll check in with Dr. Johnson here in NH one more time before that, but just for a quick office visit (no EKG or echo). In the meantime, we are planning on enjoying a nice, warm holiday weekend and wish a relaxing time to all of you, too. I hope your holiday weekend is full of friends, family, and fun!

Photos are of Annie playing on the floor and of Jamie showing off her new bike (the one that spent the first night in the bedroom with her -- she was wee bit excited, to say the least). And one of my favorites below: Pirate Baby. "Look, Mom, I dressed Annie up, too! She's a Pirate Baby and I'm the Pirate Captain." The look on Annie's face (and there's a whole series of these photos) cracks me up. I could write 10 different captions for this one!

Follow-Up Conversation with Dr. Smoot

Just a quick note to follow-up on the last post and the questions raised by the cardiologist we saw last week. I spoke with Dr. Smoot the following morning and she agreed that Annie's dose of digoxin is low. She said that she is not a huge believer in digoxin, particularly in kids that are not in heart failure, so she is conservative in the dosages. She does agree that the dose has probably gone too low now that Annie has grown a bit, so she is going to increase the dose a bit. (She said it's probably less than a conservative dose and down to a homeopathic level now. If we're going to give it to her, it should at least be worth something! With nine daily doses of meds, I don't want any superfluous efforts -- and neither does Dr. Smoot.)

Dr. Smoot didn't feel that we needed to attempt a blood draw just now since she knows the digoxin dose is low and, therefore, knows the levels in her blood would be low. We agreed that we'll do bloodwork at the end of our next visit to Boston in early June, thinking that the GI might well request something at the same time and we can save Annie another poke.

Meanwhile, donations are still coming in to Easter Seals in Annie's name. Thank you, thank you, thank you!

A Post Full of Good Stuff ... Impromptu Visit to Therapy to Bottles

We had an impromptu visit to the cardiologist yesterday. Annie seemed overly tired and has had a few fevers ... all perfectly normal for a six month old baby who is working on her first teeth. We're still learning when to raise a red flag, though, and lethargy is definitely something we are supposed to be looking out for. (Doesn't she look lethargic in the photo? HA!) I called our cardiologist's office here in town and spoke with the cardiologist covering for Dr. Johnson. She wanted to see Annie, and truth be told I was fine with that. It has been a month since her last echo and we don't have another one scheduled until early June ... but I like seeing her heart on that screen and at least knowing whether or not it's getting worse!

After the echo (where we thought it looked about the same, but there's really no telling for our untrained eyes!), the doc came in and went over everything going on. We answered question after question while anxiously waiting for her to say something -- anything -- about the echo. Every time we wait for echo results it's torturous. It was made even more torturous yesterday because we were in the exam room we were in last summer after the very first fetal echo -- where we were given the most devastating news of our lives. We haven't been to see this particular doctor since that initial diagnosis, so we have not had any occasion to be back in this exam room. (Although, to be honest, the whole clinic is full of memories for me. The other doc's exam room is where we were first told about Annie's cardiomyopathy, the echo room on the left was our first fetal echo, etc., etc., etc. Every time we go, the history of all of our visits there is forefront in my mind, but I'm sure that's how it goes for anyone who goes through medical crises.)

The doc eventually stopped asking questions and wanted to take a look at Annie. I finally blurted out a question about the echo. "Anything remarkable on the echo? Anything going on since last time????" And she said nothing was worse ... that actually, her shortening fraction (or SF, one of two ways used to evaluate the left ventricle's function) was BETTER than the last time she had an echo up here. Hooray! Cautiously, cautiously ... but hooray! The last time they evaluated it, it was 14%, while normal is generally considered to be in the 25-40% range. Yesterday's echo yielded two different shortening fractions, one was 21% and the other was 27%. The doc said she didn't quite believe the 27% given the size of Annie's LV (i.e. it is still globular and markedly dilated, more so than she would expect to see in a heart with a 27% SF), but she felt that the 21% SF was probably more accurate. We'll take it -- it's still much better than last time!

The downside was the request for blood. We were okay with it and not terribly surprised since she hasn't had any bloodwork done since she was in the hospital in mid-March. The doc was interested in Annie's digoxin dose, saying it was quite low for her weight. In any event, she wanted to do a complete blood count and test the digoxin levels in her blood. Unfortunately, it was the worst experience we've had with a blood draw and the worst screaming I have ever heard Annie doing, so I pulled the plug after (actually in the middle of) the second attempt. (They were fishing, fishing around in her arm, with the needle as far in as it would go -- UGH!) I'll touch base with Dr. Smoot in Boston today to see what she thinks we should do as far as the digoxin and repeating (or I should say attempting to repeat) the blood draw.

Oh, and did I mention that I felt Annie's first tooth popping through her gums for the first time WHILE she was having the echo done yesterday? Yes, I really think we just had a $1300 echo for a baby who is TEETHING and nothing more! (That's what you get, insurance, for refusing to pay for everything out-of-the-ordinary. I don't feel bad at all, especially since we got some seemingly good news out of it.) I'm sure the blood draw would have been in our future one way or another, so I don't think that's a wasted effort. Ok, I'm hoping it wasn't a wasted effort and that we didn't put her through that over teething! What are we, first time parents?!? No, just first time parents of a cardiac baby ....

Anyway, on to more good news. Annie looked phenomenal during her PT appointment this week! I couldn't believe how well she did. She sat up so straight and maintained it on her own for long periods. She's also doing fun stuff with her toys now, including operating cause-and-effect toys, and not just putting them directly into her mouth. She's really figuring them out and exploring them (then they go right in the mouth!). She has been on the move for the past few weeks, too -- she can roll across the living room without any problem at all. (Watch out puppies -- another one is on the go!) She's not sitting on her own yet, but she looks like she's on her way and that is much more than I would have said two weeks ago. Kelly, her PT, was impressed with how much she has changed in the past couple of weeks and kept saying "she's doing great" or "look at that."

Yet more good news. This baby SUCKS! Yes, that is more than great news in our house!! We don't know if her lower jaw is growing and that is helping her or what else could possibly have changed, except that she can definitely suck when she wants to. She rarely shows any signs of an appetite, so we don't get to see her really sucking very often. Every once in awhile, though, watch out! This morning she sucked down a bottle all by herself. That is terrific news since she needs that skill not just now (although we still squeeze the milk into her mouth the vast majority of the time) but as she begins to eat solid food.

Last bit of good news is the continued, amazing, overwhelming, and humbling support you all have shown in donating to Easter Seals and supporting us in the Walk With Me on June 7. I am not exaggerating when I say that I will be thinking of each and every one of you while we walk. Thank you, all! To date, we have raised close to $1400 for this incredible organization that is helping Annie defy the odds and surprise everyone with her strength and spirit.

Phew! Sorry for the long post. I think I'm finding that the blog posts are therapeutic, so I tend to go straight to writing when anything not-so-good is happening. I don't need the therapy as much when it's good news to report, so I hadn't written about some of this stuff yet. With the (cautiously, cautiously) good news with the echo yesterday, I just got going and lumped all of our good news in together. And while it may not be a necessary and therapeutic outlet, delivering good news has all kinds of rewards, too! :-)

Pics are from Annie's echo yesterday, sitting in her high chair (could it be helping her with her sitting skills? we're wondering) looking oh-so-tiny still, being loved by big sister, receiving therapy from the Easter Seals therapist, and her first trip to the beach.