Brit - January 2004

age 4 years 10 months

Brit - August 2005

age 6 years 5 months

Thurs, 01 Jun 2000 - 15 days post surgery
We flew to the U.S. (we live in Israel) on May 8th and stayed with my family for a week and had a great time - my family hadn't seen our twins yet. It was a wonderful way to disconnect mentally from the whole tongue surgery thing as well as to recover from jet lag before heading to St. Louis. We arrived in St. Louis on Sunday evening May 14th at about 5:30 p.m. The next morning we called the baby-sitting services we'd hired to find out what the heck was going on. They'd promised us they'd have everything settled the week before for a caretaker for Brit's twin (Zach) for several hours each day while Brit was in the hospital. It was only 2 days before the surgery and they still had no one. We promptly called my mother to ask her to come to St. Louis. We'd all gotten a nasty 12-hour stomach virus since landing in St Louis as well. Wednesday morning came around though and everyone was finally well, if not rested, and basically ready for Brit's surgery.

The surgery was scheduled for 9:30 a.m. and we were required to be there by 8:00 a.m. Brit had eaten her dinner at 7 pm the previous evening and wasn't allowed anything but water/ pedialite/ apple juice after midnight. After 6 a.m. she wasn't allowed anything. So she was getting pretty hungry by the time we got to the hospital. But she was great. Smiling, playing and charming anyone who crossed her path. We were soaking up those last glimpses of her sweet tongue before the surgery took it away from us.

After a while we were called into the waiting room just outside the surgical area. Within a few minutes the anesthesiologist came in and told us we wouldn't be allowed to be with her until she went to sleep (due to complications which might arise and freak us out). But we might be able to be the first people she saw when she came out of the anesthesia. Then a few minutes later she came back to take our baby girl away from us. Brit was a trooper the whole time and went away smiling to the nice lady holding her.

Then we were sent to wait in the parents waiting room a little further away. Coffee & tea and doughnuts were there for parents. A very nice touch among many that the hospital is amazing about. St. Louis Children's Hospital thinks of everything to make parents and kids feel more at ease while there at the hospital. It is a remarkable place. Play areas everywhere. Fish tanks with tropical fish everywhere! Volunteers all over the place making sure kids have something to play with. Okay on with the story....

After about an hour and a half a receptionist told us Dr Marsh was waiting for us back near the surgical area. He was still taking off his surgical mask when we got there. He assured us everything had gone fine and even told us that he'd measured her cross bite and how long he estimated for it to perhaps correct itself (which he said would be about 10-12 years). He gave us such a feeling of confidence and we went back to the waiting lounge feeling pretty good about things. Then a few minutes later they said one of us could go see Brit in the recovery room. I went back and she looked wonderful and terrible. My poor baby was swollen and had a huge clump of stitches & blood clots attached to the top of her tongue and she made a pitiful little sobbing sound with every breath. But she was doing very well. I was never sorry about the surgery. I was so sorry she was suffering & I wished I could do it for her. But I never for a moment doubted we'd made the right decision.

After Yaki visited her too, they told us they'd call us when they were ready to move her to the PICU (Pediatric Intensive Care Unit). When we did move there we got to see her only after the staff there was briefed on her case. Then we were allowed free access to her round the clock (save at shift changes for an hour). The nurses there were wonderful as was the doctor who was in charge of her case in the PICU (Dr McGuire). Brit was on Morphine and Tylenol w/ Codeine at first. The morphine makes the baby's face itch like crazy and Brit was rubbing her face constantly. I made an offhand comment about this to the nurse around 2 am and she suggested giving her Benedryl for the itching...and she said it would help Brit sleep better. Up to that point, Brit was sedated, but she never slept well...she slept constantly but fitfully. So I jumped at the suggestion so long as it was approved by the doctor. Within half an hour Brit's nose had stopped itching and she was well into a deep sleep. An hour later I took the chance to catch some sleep myself in the parents lounge (parents aren't allowed to sleep in the PICU). When I came back 3 hours later, Brit was just waking up and looking so much better. Her eyes were still quite red and had an insane look from the morphine, but she looked more alert and more rested. By 24 hours post surgery she was off morphine completely and only on Tylenol w/ Codeine. In the evening (Thursday) she was moved to the regular ward on the 8th floor. Yaki was on duty then and I was home getting rest & bonding with Zach. When I came back Brit looked like a whole new baby. She was playing with her daddy and had us both in awe at her calm and sweetness and smiling. I slept with her that night and by 3 a.m. she was ready to crawl around and get down to some serious play time.

Friday morning (48 hours post surgery) just before noon, her i.v. went bad & had to be replaced. We took the opportunity to take an "i.v. break" and visited the 8th floor garden and the play room. Wow! It's an absolutely gorgeous outside garden with little streams & water lily ponds & bridges & FLOWERS everywhere. An oasis and refuge that I highly recommend to any parent and their child who will spend any time at all at St. Louis Children's hospital. The playroom adjacent is also a wonderful place to take kids to play. Gorgeous toys and an atmosphere of pure fun!

Now, the problem with replacing Brit's i.v. was that they poked her twice and couldn't get a vein that worked. The previous morning they'd had the same problem and had had to poke her three times before they finally got it to work. Having been an NICU baby and all those blood tests she's had up til now pretty much put her veins in bad shape. She didn't have very many veins left to choose from and the nurse on duty (a male nurse named Chris who we truly loved) didn't want to risk wasting any more good ones. So he called in the emergency transport team who are supposed to be the best at getting an i.v. to work. Again they tried twice and still no luck. So I asked that Dr Marsh be consulted before any decisions were made regarding putting an NG tube in her or cutting her to go below the surface for a vein. Dr Marsh was firm about Brit being able to go quite a few hours without the i.v. before dehydrating and it might get her dry enough to make her want to drink on her own....and then she'd have no need for the dratted i.v.! But alas, Brit wouldn't drink and finally around 6 p.m. I had to go home and get Zach ready for bed. Yaki called around 9 p.m. and Brit still hadn't had anything to drink.  I went to sleep pretty resigned that she was going to have an NG tube when I woke up the next morning (or she'd be stuck with a needle at least a few more times). When I got to the hospital with Zach the next morning at around 7:30 I saw the loveliest sight I've ever seen....Brit on her Daddy's lap drinking water from a styrofoam cup. Apparently 10 minutes before she was to be stuck with another needle at 2 a.m., Brit decided to steal her Daddy's Dr Pepper and drink it down - along with 150 ml of water. Great timing Brit!

About an hour or so later, we were told it was up to us when Brit went home. Whenever we were comfortable with what she was taking in, we could abscond with her and kiss that private room good-bye. So I hurried to get her to drink ANYthing other than water (something with nutritional value). It ended up being carrot juice - one of her favorites. And then we took her home to our rented apartment early that afternoon. Brit was playing and crawling and having a great time right from the start. She was still extremely clingy and basically wanted nothing to do with anyone but Mommy for several days. But by about day three out of the hospital, she was friends again with Zach and starting to be nicer to her daddy. We visited all sorts of things in the week following her release. We went to the Gateway Arch, the zoo, botanical gardens, Six Flags, Daniel Boone's home, Merimac Caverns, and other places. You can find a wealth of things to do from St. Louis' web site. 

Brit still didn't have her sweet innocent angelic look back yet in her eyes and we were quite concerned about this. You could see vividly the distrust on her face. So at our last follow-up with Dr Marsh on that Friday we asked about this. He assured us that we would indeed get our baby daughter back, it would only take time. And every day has indeed gotten her closer back to herself. She is still extremely clingy although not nearly what she was in the first few days after surgery. And she cries more still.

We returned to Israel (where we live) on Sunday May 29th, three weeks after we left. We are so very happy to be home again. Brit still won't even touch a bottle and usually won't even drink from a cup. She prefers thick things like yoghurt and pudding. Dr Marsh said this too is normal so long as there is swelling or 'danger to the airway'. So I hope that perhaps she'll start thinking better of the bottle in a week or so when the swelling is basically all down. Feeding her with a spoon is not only time consuming, but tiring. And it was a great source of comfort for her to have a water bottle at hand whenever she woke up in the middle of the night. Now she can't do this for herself so she cries to wake us up to help her - at least a couple of times every night. I think this frustrates her as much as it tires us.

Since the surgery, she has very little patience for things that don't go exactly as she wants them to. This, too, has gotten better as the days pass, but she's still quite easily upset. For example, if she's thirsty but I interpret that she's hungry and offer her food instead of a drink, she'll get so furious that she'll even refuse the drink after her tantrum is over. But on the other hand, she smiles and plays and babbles so sweetly that one would have a very difficult time believing that this little girl underwent major surgery just 2 weeks ago.

Her stitches are still coming out slowly. Sometimes there is a loose string that either hangs out of her mouth or down her throat and this really upsets her. So when I can, I clip them (as Dr Marsh suggested) and I think this helps somewhat. But we'll all be glad when those stitches are out completely! 

Still, we are so pleased with the results of Dr Marsh's work, the hospital stay and our Britty's recovery. She is doing so well and each day she is getting a little bit closer to her old self. It's tiring and exhausting - and did I mention tiring? - but we are constantly in awe of her and her courage and her strength. Sometimes I feel like I'm going to pull my hair out when she cries non-stop for me to hold her, or when I cook 17 different things for her and she rejects every last one of them, or when her brother Zach is being whiny and insecure due to all that he's endured over the last 3 weeks. But then an hour later I step back and look at what's happened in these last few weeks and I again realize what a true trooper she really is and how well her brother has bounced back now that we've gotten home again. Despite the trauma both physically and emotionally to Brit, despite her crankiness lately, despite the exhaustion and worry, we would never go back and undo this surgery if given the choice. We are certain it was the right decision and that Dr Marsh was the absolutely best surgeon for the job. We are reminded every day and every hour of what a remarkable little girl we have been blessed with. How she is recovering so well and generally with such grace (hey, you can't fault her for being cranky now and then after all she's been through!) makes her one of my greatest heroes.

Sun, 11 Jun 2000 - 25 days post surgery
About 3 1/2 weeks after her surgery a rather large bump appeared on Brit's tongue. Two days later a second bump appeared & by that point she was hardly eating or drinking anything. I contacted Dr Marsh about this and he said she likely had inflammation around some of the thicker stitches that were starting to come out. By the next morning when we were able to go to our local ENT, Brit had about 8+ of those bumps all over her tongue. She was clearly miserable and would break out into sudden fits of screaming throughout the day. The ENT prescribed her Amoxycillin to prevent any infection and we gave her the local equivalent of liquid Tylenol for the pain. Within 2 days the swelling began to go down noticeably & Brit's spirits were much better. Now there is no swelling in her mouth, although she still has stitches that need to come out. We know this can take 5-6 weeks before all the stitches are out completely.

On Thursday of last week Brit drank from a bottle for the first time since surgery - 22 days after surgery. She drank about 1 1/2 oz and then 10 minutes later drank another ounce. I was so excited I nearly started crying right there on the street! We were out for a walk in the stroller and I offered it to her as I often do. I stuck just the very tip of the nipple in her mouth (and until now she'd always turn her head away or slap the bottle away so even doing that was impossible). She mouthed it for a few seconds and then started trying to suck on it. I gave her a cereal nipple (one of our regular nipples we've cut a bigger hole in so the twins can have cereal added to their night time bottles without the nipple getting clogged up). Now it's been three days since then and Brit hasn't returned to spoon feeding at all (except to eat macaroni & cheese which is her favorite food in the entire world ;-). She adores her bottle and even gets mad when it goes empty. Her sucking has improved enough, too, that  she has no trouble drinking from her regular bottle nipple from before the surgery.  Also, her disposition has improved dramatically since she started drinking from the bottle  and she is far more independent now as well. Basically she is just about back to her old self finally. And a what a great feeling that is to see her smile and dance like she used to! I could have written less, but I could have said sooooooooooo much more. So please forgive the length and I hope this has helped some of you who are considering a tongue reduction surgery for your own child.

Julie and Yaki
June 2000

December  2002 - 2 years 7 months after Brit's tongue reduction surgery:

Brit is a happy (nearly) 4 year old girl. She went through a few speech therapy sessions when she was about 2 1/2 years old. Mostly this was to help her and her twin brother Zach catch up a bit. In the end we didn't find it helpful in the least and stopped after about 6 sessions. Zach speaks both English and Hebrew age appropriately and Brit speaks both just slightly less than age appropriately. We feel this is more a personality thing than any way related to BWS or her tongue. Brit also now proudly shows her tongue to anyone interested. Her cross bite completely corrected itself within a year of her tongue reduction, so of course we are very pleased about that. She's a charming, flirtatious little girl with a heart of gold and a fiery temper too - hehehe. To the right is a photo of Brit from July 2002.

January 2004 - 3 years 8 months after Brit's tongue reduction surgery:

No one would ever know there was anything "different" about Brit. She's a precocious, flirtatious, little girl with so much spunk and spirit it shines from her. She's sometimes naughty, more often incredibly sweet, and no one except her family even guesses that she's had any surgeries or has a "syndrome". She's developing wonderfully and has passed the BWS milestone of graduating from her AFP blood draws ... thankfully without incident! She still gets quarterly ultrasounds of course, but on all the other 361 days of the year, BWS disappears for us. She's the greatest, most attentive and loving big sister to her now 2 year old sister Meged. She can fight like cats and dogs with her twin brother Zach, but she still adores him without hesitation. My prayer and hope is that the coming years will be just as uneventful and she will have only her tongue scars to remind us of her BWS. This is a photo of Brit, Meged and Zach taken in December 2003.

January 2006

Brit is about to turn seven years old. How trite, yet how true, to say "how time flies!". Brit is growing into an amazing young lady with an enormous capacity for love and compassion for others. She is in the middle of 1st grade now and loves to read in both English and Hebrew - although of course, her Hebrew reading skills are naturally better than her English. She has a passion for drawing and any free moment she has is spent with some sort of writing utensil in hand. I wouldn't want to say that Brit is "normal" as that would never do justice to all of the many wonderful facets that come together to make her who she is. But she isn't hindered in any way by BWS. Her sprightly energy and warm heart keep her skipping and dancing through life - and I feel so grateful to be able to share in her journey.

-Julie