Tuesday, January 13, 2009

Sylvie is A-OK!

Thanks so much for all your concern and well wishes!

Yesterday's procedure went very well. We got to the hospital around 6:30am for our 7am appointment so we had to wait a bit before things got going. Poor Sylvie was irked that we refused to give her her morning milk & CIB and kept very slowly and deliberately saying/signing: "I...want...milk." as if we were maybe just having trouble understanding her request. Considering we've spent a great deal of time and effort on helping her to gain good communication skills, I was doing my best to let her know that we did in fact hear what she was saying but that she just wasn't allowed to have anything to eat or drink before the procedure because the sedation would make her nauseous. Her response?


So Theron and I just did our best to distract her until the nurse came to escort us back to what would be Sylvie's recovery room. Once there, the nurse went over the specifics of the procedure and what to expect afterwards and asked if we had any questions. Then another nurse, Steve, came in. He informed us that he would be the nurse in the room with Sylvie during the procedure and also asked if we had any questions. (You gotta appreciate the fact that the doctors and nurses at CHB like to keep the parents informed!) Steve took our cell phone numbers so he could keep us updated on the status of the procedure. Finally, Sylvie was given an oral sedative that she did not at all care for and after a bit she grew drowsy. When she finally succumbed to the soporific, Steve gathered her from my arms and took her off for prepping.

Theron and I went down to the main floor to grab some much needed coffee and overpriced but delicious nibbles at Au Bon Pain. Since the cath lab waiting room had two big signs that stated NO FOOD or BEVERAGES, we hung out in the seating area by the big fish tank in the lobby to eat. To pass time and try and keep everyone updated on the situation we'd brought our laptops and made use of the hospital's wi-fi. Shortly thereafter we got a call from Steve saying that Sylvie was fully prepped and they were preparing to place the coil. Pretty fast work! We weren't sure if wi-fi was available in the cath lab waiting room so Theron remained in the lobby while I went back upstairs.

About 30-40 minutes later, Sylvies cardiologist Dr. Lang came into the waiting room and told me everything had gone splendidly and that Sylvie would be able to see her shortly. I went back downstairs to fetch Theron and when we got back upstairs, Sylvie was in the recovery room, completely zonked. Steve informed us that they'd had to give her another dose of sedative right at the end because she'd started to come around while they were removing the catheter and as a result she'd most likely be out for a while. She did sleep a great deal waking up occasionally for longer and longer periods. We started giving her water which didn't want to stay down at first. Karen, the nurse who cared for her during the recovery phase, gave her some anti nausea meds in her IV which helped.

Around 4:30pm Sylvie had an xray to ensure that the coil hadn't migrated and was staying put (it was fine). Then Dr. Mazwi, the cardiologist who had assisted Dr. Lang, was kind enough to show us some images--both still and video!--of Sylvie's procedure which was pretty neat to see. He also told us the repairs from her surgery in '07 looked perfect and that she wase unlikely to require any further surgical interventions. Yay!

Since both the xray and the puncture sites from the catheterization looked good we were free to take her home after a final dose of antibiotic and Tylenol. She got a little bit sick again in the car and after we got home. We were trying to gradually reintroduce her to just liquids but she began all but begging for real food: "Chip!"...Pizza? Pizza!"..."S'getti!"..."Lunch!"..."Chicken!" We started off giving her just some milk and CIB and she did throw it up after a bit but I think it was because she'd had a coughing fit and gagged more than because her stomach was still upset. We waited a little bit longer and gave her more milk. When that stayed down we gave her some goldfish crackers and then some beef broth and a little bit of white rice from the Chinese takeout we'd ordered for ourselves. Thankfully, there were no further upchucks and we all slept pretty well last night.

Sylvie seems perfectly fine today but per doctor's orders we're keeping her home from school until Thursday. Right now she's chowing down on chicken nuggets, mixed veg and grapes while singing her own particular version of "I've Been Working on the Railroad." All is pretty right with the world if you ask me!

Sunday, January 11, 2009

Second---and hopefully FINAL--heart procedure

Tomorrow morning, Sylvie will be having a follow up cardiac procedure to close off the PDA that was unsuccessfully ligated during her open heart surgery last year. Luckily, this procedure is much less invasive. A tiny stainless steel wire, or coil, will be placed in the PDA via a catheter threaded through the femoral artery and vein via a small incision in Sylvie's groin while she is under concious sedation instead of general anesthesia. We've been assured that Children's Hospital performs several of these procedures each day and that the risk associated is akin to having one's tonsils or appendix removed. In fact, it's considered an outpatient procedure in most cases and in all likelihood we'll be on our way home by late afternoon.

While we are not 100% relaxed and at ease with the situation by any means, we are far less freaked out than we were last time. However, any and all thoughts/prayers/healing energies etc you'd care to send our girl's way tomorrow are very much appreciated!

Saturday, January 10, 2009


Hey! Guess it's been a while since I posted, huh? I never meant to quit the blog but I just never seemed to have the time to sit down and write things. I was sure that I'd pick it up again after Sylvie started school but obviously that hasn't exactly been the case. Part of the problem was that after so much time had passed I felt like I was required to write a hugely epic post about all that had occurred and I even started it back in Sept but, well...that didn't get finished. So I've decided to start again with little bits and pieces from each day as it occurs.

Today's bit has to do with Sylvie's ever increasing ability to communicate verbally which has really come quite a long way:

In the midst of watching an Elmo's World DVD, Sylvie jumped down from the couch, turned to me and exclaimed, "Chicken! Pizza! Pnuhburr!*Apple!" Translation: "Time for dinner mom!"

*peanut butter

Friday, March 28, 2008

NSTAR's Walk for Children's Hospital Boston

Please support our walk! as you all know, Sylvie has been a fairly regular visitor to Children's Hospital Boston--seen various specialists, been treated for dehydration after a bad bout of GI bug and this past fall had open heart surgery to correct three (thankfully minor) heart defects--and the quality of care there has always been top notch. Children's Hospital Boston is a wonderful place, a truly unique hospital—one of the best pediatric institutions in the world, giving hope to so many kids and their families, constantly finding new ways to treat or cure an amazing variety of diseases. The doctors and nurses here never say "never" and they treat kids from all over the world. Some have families who can't afford to pay for their care. Children's takes care of them all! And it's very involved with the neighborhoods around it—helping low-income and at-risk kids.

Your donation will make a difference in kids' lives!

Click HERE to sponsor one of us!

Wednesday, March 26, 2008

Long overdue post part 2: School is IN..and off to a bumpy start

Because of Sylvie's stomach bug, she unfortunately missed her last EI playgroup on Monday and what would have been her first day of school on Tuesday...so it wasn't until Wednesday that our girl began her student life. Theron and I took her into school so that we could meet the teacher and her aides and see what the classroom was like. It was quite spacious and had it's own bathroom--a side benefit of this school is that they help potty train! Sylvie seemed immediately to feel at home and wandered around the room looking at all the varied activities available to her. Once the other five kids arrived and the teacher got them all together for their morning circle, Theron and I snuck out marveling at how amazing it is that our daughter is in school!

I dropped Theron off at the T station so he could get to work and then I went home to our weirdly empty house. It was just a few hours later when I got a call for the school nurse; the teacher had concerns about Sylvie's hands being cold and bluish. I let her know that it wasn't an unusual occurrence for Sylvie and that I too had poor circulation in my extremities. I think they were being extra cautious because of her history of cardiac issues which I definitely appreciated. When the school bus (which is actually a van) dropped her off later that afternoon, she seemed very happy to be home but not especially tired from her first full day at school.

Each child in the class has a folder that comes home each day with daily status reports for us parents; if the child had a good day/tired day/hard day what activities they participated in how much (if any) of their snack or lunch they ate etc. There's also usually a personal note about any special accomplishments or troubles on that day. They kept things light on her first day and basically just let her explore the room on demand. According to the day's note, Sylvie especially loved the rice table and classroom computer!

Sylvie's second day was the bumpiest so far...literally. About an hour after we put her on the bus to school, I got another call from the nurse; this time because Sylvie had fallen and hit her head right after arriving at the school. Apparently, the teacher had taken her off the bus and was helping another kid off who decided to make a break for it in the direction of the street. In grabbing the runaway, Sylvie was accidentally knocked off balance and fell. The nurse said that Sylvie was fine but had a large goose egg on her forehead and that the teacher felt terrible. Of course I wasn't thrilled to hear that this had happened but I am aware that accidents do occur and there have been days when Sylvie sported two lumps on her forehead from tumbles she took at home so I assured the nurse that as long as Sylvie was ok then I was ok too.

Guess who called me AGAIN a few hours later?
The school nurse.

Sylvie had bumped her head a second time, this time after tipping over backwards in her chair. The nurse assured me that she'd checked her out again and that Sylvie was fine...but that the poor teacher was practically in tears at this point!

Despite her bumpy second day at school, Sylvie came home in a fine mood. And though she was indeed sporting an enormous scraped knot on her forehead her 'voluminous' hair seemed to have provided enough cushioning to prevent a bump on the back of her head.

Sylvie has been a preschooler for almost a month now and seems to be enjoying it...and we've not had (and hopefully won't have) anymore calls from the school nurse!

Tuesday, March 18, 2008

Long overdue post part 1: Sylvie is THREE!!!

Sylvie's birthday fell on a Tuesday this year and since we wanted to have a party, we decided to celebrate a couple of days early on Sunday. We knew we'd have several small children ranging in age from 1-3.5 yrs, we wanted to make sure that they'd all be kept busy (and happy!) so we set up two play areas: one in Sylvie's room and one upstairs. The upstairs play area had a pop-up house/ball pit, tubes to crawl through and even butcher paper on the walls with a large can of crayons at hand for any aspiring muralists. Plenty of fine and gross motor therapy for all, heh.

All told we had about 25 people at the party and everyone seemed to have a great time. Sylvie enjoyed herself but seemed mostly oblivious to the fact that the party was for her. Still, she did run around saying "happy birthday! happy birthday!" at random intervals which was adorable. I managed to get a party hat on her (briefly) and she cracked up at her reflection and said "happy birthday!" a few more times because the pointy hat symbolizes birthdays to her ever since we attended baby Bryce's 1st birthday in December where many of the guests wore the hats.

We had one minor upset during the cupcake eating when Sylvie gagged and threw up. The mess was mostly contained on her booster seat tray and we were able to whisk her off to the bathroom for cleanup and a change so quickly that almost no one knew what had happened. We kept an eye on her for a bit but after a while we thought (as it turns out, incorrectly) that it was just a case of 'too much birthday' as she went right back to being her smiley self. When it came time to open presents, Sylvie was pretty 'meh' about it but Sara's enthusiasm as our self-designated helper more than made up for her lack of interest. Sylvie received many fabulous gifts including cool clothes, fun books, art supplies, a scribbly spiral pen, a wooden sandwich set, character dress-up magnets featuring Elmo and Zoe, a bucket o' play-doh fun...(plus many other things that I hope the people who gave them will not be offended by my not listing!)

The party eventually wound down and everyone headed home. Randy and Alayna stayed a bit longer and helped with the clean-up (thanks guys!) before they too departed. All was right with the world until later that night, about 2 hours after Sylvie had gone to bed, when suddenly we heard her coughing...followed by the unmistakable sound of her vomiting. Turns out the cupcake upchuck from earlier in the day was not an isolated incident as we'd hoped because the poor girl was unhappy-go-pukey all through the wee hours of the morning. This also alerted us that Sylvie's birthday soiree that day had been a possible disease vector because it was a little too coincidental that Theron had puked his guts out 2 nights prior and that he'd likely had a GI bug and not just food poisoning as we'd originally believed. (We learned later that only one party guest ended up being sick as well and her parents thought she could just as easily have gotten it from another friend she saw that same day.)

Sylvie stopped throwing up around dawn but was completely wiped the whole next day and developed a high but short lived fever of 102 that afternoon. I made sure to keep her hydrated and cooled her off with a damp cloth during the worst of the fever and after a good nights rest she was much better the following day.

Sunday, January 13, 2008

Welcome Siobhan Elysées Flora!

For the second time in less than a week, I have another birth annnouncement! Happy Day and *!!congratulations!!* this time to our dear friends Christy and Jay on the birth today of their daughter, Siobhan Elysées Flora Fedosoff! Siobahn arrived at 8:23pm and weighed in at a respectable 7lb 15oz.