Friday, November 14, 2014

Hat Trick!

We are proud, delighted, overjoyed, and excited to announce the adoption of our third little miracle!  Meet Francesca Yiman, born on August 27, 2013....



After a few months of stressful medical situations, it feels so good to be celebrating something so wonderful for our family.  But this adoption has been far from straightforward and stress-free, which is why we chose to wait until LOA (which we got on October 30 after just submitting our LOI on October 14!!!!) to scream our news from the rooftops.  So, the story...

We first found out about our daughter in mid-June from a respected fellow thal mama.  She posted a picture of little Yiman in our private online group, saying that this baby was having her paperwork put together for adoption.  But it wasn't her picture that caught my eye.  Of course my heart opened to her, knowing that she has thalassemia.  But hearing that this little girl was in Guangxi, a place very close to my heart because my beloved Emmie is from there, and learning that she was at Yulin CWI made me want to bring her home right then.  As in, jump on a plane and go and GET HER.  Why?  Because I knew that two children with thalassemia from this orphanage had died relatively recently.  Never got to know the love of a forever family.  Not that they were not being loved at the CWI, but for a child with a life-threatening illness, love just isn't enough.  That is the harsh reality.  These children need medical care that is not always readily available in China, to anyone, never mind orphans.  And in Guangxi, they are often hit with blood shortages the hardest.

Falling in love with this little girl was one thing, but getting her file and getting her home to us was completely another.  I had watched others try the "pre-identified" adoption route (i.e., chasing down the file of a child who you are aware of for one reason or another, but who is not actually available for adoption yet)...some with success, some not so much.  So we contacted one of the most respected smaller agencies around, which happens to be right near us.  They felt that with their connections and our perseverance that we had a good chance--but not a guarantee--of making it happen.  So we signed on and the now-familiar whirlwind began.  As usual, we got everything done in record time.  I ran around like crazy...one day a beach trip, the next to pick up documents.  Strolling around a feast in the North End, then hitting the State House, girls in tow, for authentications.  Our home study was completed in a month, we walked in early for fingerprints, our I800a was expedited.  One night we even packed the whole family in the car in order to get a document to FedEx in Boston to make that last pickup out of Logan.  (We even followed it with a celebratory dumpling run in Chinatown.  "What the heck!  The gals are up too late already!")  We checked off every trick in the Expedited Adoption book (which, perhaps, I should write...you know, when I have a free minute, LOL).  Everyone was in agreement:  Get this baby home fast.  We were DTC on August 22, one day before our 12th wedding anniversary.  We finally took a breath.

That late night dumpling run after rushing a document
to make the last plane out of Logan.

August 22

Celebrating our 12th wedding anniversary our favorite way...
with our girls.


And then....

The file.  Our agency had been working closely with the CWI to track the file.  At first, it was going to be handled almost like a partnership file, going right to our agency and to us.  While there was no formal partnership, the CWI director and our agency director gave each other their word that they would commit to making this happen.  It seemed so risky, but our agency director reminded us that she had discussed this at length with the CWI director.  The CWI director would be going completely back on her promise if she decided not to follow through.  So the file was sent to the provincial office with this agreement in place, with a letter explaining what was to be done with the file.  Then, our worst fears came true.  The provincial officials determined that this could not be done.  The file would just go to CCCWA, and hit the shared list.  It would be up for grabs for anyone.  My guess is that they felt that without a formal contract or partnership agreement in place, that a simple handshake would not do.  I understand their perspective, thinking that this would be too risky for them, and for Yiman. So off the file went, available to any agency.

We were crestfallen, but wonderful things were happening for our family.  Emmie had been terribly ill over the summer, and now she was feeling so much better and we were getting our feet back on the ground again with her and all of her new medications.  She was starting pre-K, Rosie was getting ready for dance class, we made our first trip to Santa's Village, the girls were September Artists of the Month at Boston Children's Hospital, and we had a vacation coming up.  Life was great.  We felt so lucky for what we already had, but we couldn't help but wonder what happened to Yiman.  It was anyone's guess where the file was for all of September.  The shared list came out and our agency saw nothing.  I hate to say that we were starting to lose hope, but we were.  At least for us.  I would stare at the one photo we had of her and have to look away.  All we could wish for was that she'd have a family, and soon.  And as long as that happened, it was all going to be OK.

First day of Pre-K

First day of dance




Our LONG awaited "summer" vacation in September.







September turned into October.  People on several adoption groups were grumbling about agencies grabbing thal files with no families open to thal.  I was grumpy about it, too, but too caught up in our situation to worry much about it.  We went apple picking, laughing and smiling and filling our bellies with apples and cider donuts.  It was a wonderful day, sunny and bright.  The four of us cuddled on the hayride, and again I pinched myself, like I do almost daily, thinking about how lucky I am to have this perfect little family.  Well, far from perfect, but perfect to me.  I thought about how the memories and the love that we have could fill the oceans 10 times.  And that's about when Patrick looked at his phone and saw that I got an email from my fellow thal mama friend saying that Yiman's file had been assigned to another agency.

My favorite apples in the apple cart.




If the story ended there, it would be sad for us, happy for someone else, and either way OK for Yiman as long as she ended up in a loving family who could provide for her.  But it didn't.  As it turned out, the other agency did not have any families at the time who were open to adopting a child with thalassemia.  Now, many agencies in that situation would simply hold the file for several months and sort of "shop" around the file, looking for new clients who might be interested in working with them to adopt her.  You see this happen all the time.  And, perhaps this is a good business model for some agencies and it might be safe for some children.  But, when a child has a life-threatening blood disorder that *requires* ongoing treatment, needs to get home fast, and qualifies for expediting, it's debatable whether the agency should hold that file for what could be months if there is someone out there with another agency who is logged in and ready to say, "YES!  YES!  A million times yes!!" NOW.  And, thankfully for us, that is how the other agency felt.  Yes, they likely could have held the file and "advertised" it and signed on a new client who would adopt her.  But, upon hearing that there was a family ready and able (US!!) to move forward right then and there for this baby girl, they felt it was more important for her to get home fast, so without hesitation they agreed to transfer the file to our agency.  They were cooperative and worked quickly with our agency and CCCWA, and nine days later, on October 14th, our agency had the official file and locked it immediately for us.

We found you!

So, now, with our LOA, I800 approval, and PDF in hand, we are finally feeling like this is really going to happen.  There is no doubt that some of this was very, very hard work on the part of many players.  But some of it was luck.  Just dumb luck.  Or maybe divine intervention.  But undeniably a lot of someone-happened-to-Facebook-something-leading-to-emailing-something-leading-to-making-a-phonecall-leading-to-who-knows-what stuff.  And, of course, the graciousness of the other agency to put Yiman first, rather than their own business.  To think about this child, receiving her care through an orphanage that lost two children to thalassemia, in a province where the blood that she desperately needs may be scarce.  That is why this baby girl is ours.  There is no doubt in anyone's mind that she is coming home much sooner because of this.  And for that, we are forever grateful.




Friday, June 27, 2014

A Good Hospital Day

We spend a lot of time at Boston Children's Hospital.  We just do.  I'm not complaining about it, I'm just stating it as a fact.  There are lots of people who spend WAY more time than we do, but there are also plenty who spend less.

Hospital days are long, stressful, tedious, and emotional for us.  I stress about pre-transfusion hemoglobin, how many sticks it's going to take to get the girls' lines in, hives, ferritin trends, palpable spleens, antibody screens, getting a urine sample, labs, labs, and more labs...I just stress myself into a stressed tizzy.  (Just ask my mother who I always call, nearly hysterical over something.)  Hospital days are often 9+ hour days for us...starting in morning traffic and leaving in rush hour and Fenway crowds.  By the time we get home, I am totally wasted.

I try as hard as I can to make hospital days easier and more pleasant for the girls.  I pack lots of stuff to keep them happy, order their favorite foods, get them plenty of snacks, keep the DVD player loaded with a favorite video.  I hold them and cuddle them and rub them and love them through the whole thing.  I try to wait on the girls the best I can, only leaving their side to use the bathroom.

This is where our BCH village comes in.  We are so blessed to have an amazing child life specialist who thinks of every little thing you could ever imagine to make things easier for the girls-and for me.  We have a great nursing staff, including our favorite nurse who--somehow--has the magic touch getting Emmie's IV in with one stick.  We have an NP who comes by to check on us, and an AMAZING hematologist who (as incredibly busy as he is) happily comes down whenever I ask for any reason-big or small.  The volunteers, clinical assistants, admins, and even facilities staff all know us well and make us feel loved.

A few weeks ago, I walked into our infusion unit nearly hysterical.  We were super late, both of the girls were covered in vomit--one from car sickness and one from a stomach virus.  Everyone was upset and crying and frazzled and miserable.  I just stood there, threw up my hands, and said to pretty much everyone at the nurse's station, "I NEED HELP.  I AM OVERWHELMED."  Everyone jumped up grabbing throw-up bins and towels and johnny's and ice water.  I was nearly in tears worrying about dehydration from the vomiting creating impossible-to-find-veins and before I knew it there was a cranberry juice in my hand and everyone was reassuring me to calm down, that it would all be OK.  And it was OK.  Not an easy day by any stretch, but it was OK.

That was a crappy day.  Today was a good day.  No drama.  Rosie was one stick and getting her blood and eating her 4 turkey sausages in no time.  A new volunteer came by so I could take a quick breather and a walk for some hospital coffee.  The clowns visited after lunch and we all laughed and laughed.  The girls got clown noses and had the whole unit in stitches.  The art therapist stopped by and before I knew it, an entire hour had passed with the girls working on art projects and having a great time.  She even said that the girls got the "prize" for the best attention span of anyone she'd visited in a week.  Then we were done.  The girls gave hugs and high-fives and grabbed plenty of snacks and stickers for the road and we were all smiling.  As we were leaving, I said to our dear child life specialist, "You know...this was a GOOD day at the hospital.  A really, really good day."

People are always commenting on how busy we are doing fun things with the girls every minute we can.  And, we do, because we want them to remember their childhood as lots of fun stuff, not lots of medical stuff.  But, if we have to spend a 90 degree summer day at the hospital instead of at the beach, we are lucky to spend it at Boston Children's with skilled nurses, a caring staff, and circus clowns!

Hospital Day....

Emmie's New Blood Day.  Rosie is pretty psyched she's just along
for the ride.

Emmie's pumped up to be getting pumped up.  Nothing like squeezing
all of us together in a hospital gurney!
Beach Day....

Having a blast in Rockport, MA.

Emmie said, "Mama, we're REALLY beach girls!"

A late, late afternoon snack before the long ride home.  We always
seem to be the last to leave the beach!


Hospital Day...

Rosie's New Blood Day.  Emmie's turn to clown around!

After the clowns dropped by, they left clown noses for the girls.
Unfortunately, the girls' noses are too tiny for them to stay on!

An awesome visit from the art therapist.  The girls had so much fun
passing the time making arts and crafts.

We were having so much fun, it was like we forgot where we were!

Next Beach Day coming soon...you get the idea!

Saturday, May 10, 2014

Mama's Day

"Mama, can you make one of those pretty bows like the ones for our hair?  And can you make a box?  Do you make boxes?  And can you help me wrap the box?  I want to put one of my toys in it.  Then I'll hide it.  For Mother's Day!"

A friend asked me today what I'd be doing for Mother's Day this year.  Apparently, per my 4-year-old's request, I'll be making bows and boxes and wrapping...So I can get a recycled toy from my daughters.  How green of them.

Later on, another friend implored me to enjoy these times, because, in her words, "...when they are sixteen they'll act like they don't even KNOW you.  They won't even CARE that it's Mother's Day.  Trust me!"  Wow.  So I'm going from wrapping my own used puzzle with half the pieces missing to being completely ignored.  That's Mother's Day, huh?

No.

Mother's Day to me is a special day because it makes me slow down and think about what it means to be a mother.  Yes, I'll honestly admit that I hope to get a few extra minutes of sleep, a scribbly handmade card, and an extra-delicious cappuccino.  But my day isn't going to be spent drinking mimosas or at a spa or wearing heels at some fancy restaurant.  It's going to be spent with the two little beauties who made me a Mama.  Thinking about the amazing love we have between us, and how it came to be.  Questioning how I could ever be so fortunate to have the most rewarding job in the world...a mother.  Emmie and Rosie's mother.  I'll also be thinking about Emmie's two mothers in China, and Rosie's one, and how their birthmothers made the ultimate sacrifice.  I'll be wondering how in the world I'd ever be able to navigate this minefield that is motherhood without my own precious mother to help me every step of the way.  Remembering my Nana who raised two children, and opened her loving heart and her home to countless foster children.  Thinking about my other Nana who raised five children, and wondering how she did it.

Truthfully, no matter how we celebrate the day tomorrow, I'm pretty certain my present came tonight.  I was knocked down with some stomach bug out of the blue, and the heartfelt tenderness and love my girls showed me was the sweetest thing to witness.  They brought all of their favorite dolls to lay on the couch with me.  They made me about 10 cards.  They covered me with stickers.  They "read" stories to me.  They decorated the room I was relaxing in.  They kissed my belly over and over to make it feel better.  They even did a musical performance for me.  (Goodness, it's just a stomach bug that will hopefully be over in 24 hours!)  Watching them work as a team and snap to action as soon as I said I felt crummy, hatching plans about how to make me feel better and what surprises to bring me made my heart nearly explode.  This is what being a mother is about.  This is my reward and my present for taking care of these girls the very best I can day in and day out.  And no present wrapped up in a box, no champagne brunch, is better than this.

Getting serenaded by the dollies.

A performance in plain clothes just isn't a performance.  So they
had a costume change and really belted out "Mary Had a Little Lamb."  The
extended remix version.

"We're taking care of you, " Rosie said over and over.  Jeez, gals,
it's just a stomach bug that will be gone tomorrow!

So tomorrow we'll enjoy some time as a family, probably doing some of the girls' favorite things as well as mine.  I know I'll get all teary-eyed watching their excitement as I help the girls wrap and then unwrap my "gift."  I'll look at this beautiful family that my husband and I worked so hard to make and feel like the luckiest woman alive.  I'll tell my own mom for the zillionth time how I finally get it.  I really, truly understand and appreciate everything she did for us.  All of the days spent caring for us.  All of the nights spent worrying about us.  And, most importantly, the complete joy we have brought to her life.  Because there is nothing at all in the world like being a mother.  Nothing even comes close.

Moments of sweet perfection...


It doesn't get better than this.

Tuesday, May 6, 2014

One Year with our Rosie

Every time someone meets Rosie for the first time, they say, "She's TINY!"  Which, of course, is true.  But for a teeny, tiny little girl, she has a big personality and an even bigger heart.  She lights up any room with pure joy.

One year ago today, we met our little spitfire in a crowded, loud room in Guangzhou, China.  She was sick and timid, wearing a cute pink sweatsuit and slippers.  When I picked up my baby for the first time, I couldn't believe how small she was.  I felt like her little body might slip through my arms.

In those first few days in China, there was probably nothing that Rosie wanted more than to slip through my arms.  She wasn't super happy with any of us, but she definitely liked me the least.  It broke my Mama heart to be shunned by the little person I had yearned for and dreamed about for months.  Whenever Baba left the room or was out of her sight, she would look at me with sad eyes and say something over and over that we later found out was "Baba come back."  Even though I knew in my brain that she didn't know any of us at all, I still felt hurt and like a failure.  I'd be lying if I said I didn't take it personally.

Rosie threw some tantrums that were so wild that we feared our little sweetheart would hurt herself.  She was confused, sad, and unable to communicate with us.  As a result, she would throw herself on the floor and do what we nicknamed the "crab" where she would crawl on her back wildly to get away from us. During these tantrums, she seemed to have no regard for her own safety, nearly "crab crawling" into the walls.  We ended up strategically placing pillows all over the floor in preparation for these tantrums.  She liked none of us during these times.

Unlike our first days with Emmie, there were certainly moments of laughter and smiles.  Rosie ate and played and was very responsive to us.  Her little personality as a jokester began shining through very early on.  Although Emmie was struggling with having to share her Mama, Rosie benefited greatly from Emmie's presence.  This was a time when Emmie's amazing heart really shined through.

During the past year, we have watched Rosie blossom into an amazing little girl with a huge personality.  Her language has come along much quicker than we imagined it would.  She is as smart as a whip, and doesn't miss a trick.  She loves to dance and sing.  Her favorite outfit is jeans and a monkey shirt.  The little girl who was terrified of grass and sand and the ocean loves feeling it between her toes and splashing in the waves.  She has a very adventurous spirit.  She is goofy and funny and silly.  She is definitely the sidekick to Emmie.  The color commentator.  The Ed McMahon to Emmie's Johnny Carson.  She loves to make people laugh, play jokes, and act goofy.  She has a contagious laugh, and the little dimple under her right eye is a perfect sign of her happiness.

When we met Rosie, she didn't care about hugs or kissing boo boos or any of that.  She'd fall, get up, brush herself off, and move on.  We had to teach her that kind of love and tenderness.  Now, Rosie can show us that she has an amazingly tender heart.  If someone coughs--anyone--she asks, "Are you OK?"  She loves kissing boo boos, and will pat you on the back, saying, "It's OK, honey" if you are sad.  Today she walked by me in the kitchen and said, "Ooh! I forgot something!" and wrapped her little body around my leg and kissed me.  "There you go!  Perfect!" she exclaimed.

One year after we struggled in China, Rosie is a Mama's girl.  Well, and a Baba's girl.  And an Emmie's girl.  She loves us fiercely, and tells us all the time...right out of the blue.  She gives kisses and hugs freely and often.  For a little person, her hugs are some of the tightest, most heartfelt hugs I have ever experienced.  When I kiss her goodnight, she often pulls my head to her chest and asks me to lay it there.  She takes her tiny little hand and strokes my face with a tenderness I only dreamed I'd experience from her.  "You my Mama," she says over and over, with a look of perfect contentment on her face.

This little girl has come such a long way in just a year.  She's had an awful lot of medical "stuff" to contend with, in addition to basically learning a new life, and she's making it look easy.  And I, of course, know it is not easy.  She is strong and brave and someone we could all look up to.  And she's my daughter.  Our daughter.  Emmie's sister.  Grafted into our lives, into our family, into every fiber of my being.  Just when I think my life can't get any better, that my heart can't get any fuller, it does.

Thank you, Rosie, for letting us love you, for accepting us--with all of our imperfections--as your family.  We are blessed and honored and forever grateful.  Happy Rosie Day!

Those first few moments....

Our first glimpse of tiny Rosie.

Not too sure about Emmie yet.

An hour after we met.
Rosie looks (understandably) dazed.  My hand is on Emmie's head
because she was devastated I was holding her new little sister.
One year later....

Just chillin' it in a patch of dandelions.  She even makes
weeds look pretty.


From arch rivals to best friends.


Happy.

Our loves.



What better way to celebrate Rosie Day than with Chinese food.
Rosie (the kid who never eats) ate her weight in fried rice and wings.

Eating Chinese food, just like we did one year ago today half way
around the world...

...except here you end Chinese food meals with Jell-O.  Didn't
see a lot of that in China


Monday, April 28, 2014

Thyroglossal Duct Cyst - Sistrunk Procedure

As promised, this is a detailed post about my experience with a thyroglossal duct cyst and the Sistrunk procedure.  If you do not like medical stuff or gory pics, stop reading.  This is for people who are going through the same thing and want to hear about someone else's real life experience.

My thyroglossal duct cyst (TGDC) first reared it's ugly (and, yes, I mean ugly) head in August.  It came on after a upper respiratory infection as a sore, firm lump around the midline of my neck, above my thyroid.  I went to my PCP who said she suspected TGDC, but referred me to an ENT.  The ENT also said he suspected TGDC and sent me for an ultrasound.  He also put me on 10 days of antibiotics, in the hopes that it would clear things up.  He made it clear that if it was a TGDC that surgery would not be indicated unless I wanted it, or the cyst got repeatedly infected.

When we got back the results of the ultrasound we were shocked and scared.  The ultrasound showed that it was in fact a solid, vascular mass and NOT a cyst.  Obviously, this is NOT what we wanted to hear.  Since it showed up solid, the ENT sent me for an MRI for more information.  When I asked him what it could be, he said he didn't want to guess and he told me, "anything I can say will only make it worse."  The wait for that MRI felt like an eternity, and the wait for the results was even worse.  It ended up that the results of the MRI did show that it was a remnant of a TGDC.  We were thrilled and since the cyst had disappeared, we decided to wait and see if it got infected again before doing anything.

Sure enough, a couple of months later, it came back with a vengeance.  I made an appointment with the surgeon who is also the chief of ORL and the minute he saw it he said it had to go.  It had been infected several times, it looked bad, and my lack of spleen had him concerned.  He also noted that the tract went up very far to the base of my tongue.  He put me on more antibiotics and said it needed to come out once the infection was a bit under control, but ASAP.  Not what I wanted to hear a couple of weeks before Christmas, but at least it didn't give me too much time to worry about the surgery.

Because of my complicated medical history with thalassemia, I had a detailed pre-op visit, despite what the surgeon's admin wanted--she insisted because I'm "young" and "healthy" that I could just do it over the phone.  I knew this didn't sound right.  I contacted my hematologist who was really irritated by this and concurred that I really needed the full workup.  I had a transfusion a few days prior to the surgery to--as my nurse put it--get me all "shined up" and in tip-top shape for the surgery.  I also had a CT scan as the surgeon felt this would give a better picture of the cyst and duct than the MRI could.  It was really no big deal, and I didn't feel any weird sensations or have any metallic taste in my mouth.

The night before the surgery I had to stop eating at midnight, not that this was difficult as I was a total nervous wreck.  Fortunately my surgery was scheduled for the morning so I didn't have too much time to work myself into a frenzy.  I went up to the OR floor by myself and got changed, and then my husband was able to come up and sit with me.  I talked to a zillion people and answered many of the same questions over and over, which was fine with me.  The anesthesiologist was very nice.  He placed my line, using lidocaine first, although I told him that I was really a pro at getting IVs.  He also told me that they were going to intubate me through my nose to keep my oral cavity open because the surgeon wanted to do some exploration through my mouth, and might possibly have to do some of the procedure that way as well.  I had to squirt something akin to Afrin in my nose several times to help with this and to also help prevent trauma to my nose.  The surgeon came in to chat with me.  He was a lot more chipper than I was.  That's when I got really scared and started to cry.  Pretty soon after that I said goodbye to my husband and was wheeled into the OR.  The anesthesiologist put a mask on me and said it was oxygen to really fill my lungs, and after that I remember nothing else.

The next thing I knew I was being wheeled down the hall and the surgeon was joking about it being like a spa day and I got to relax.  I tried to talk and weakly asked him if he painted my toes and we laughed.  I was in and out of sleep in post-op.  At first they asked me to rate my pain and I was like, "what pain!?" but not long after that my neck and throat felt really uncomfortable so I was given some pain medicine in my IV.  I slept on and off.  I kept asking if I could go to the bathroom but they didn't want me to get up yet and I refused a bedpan so I waited maybe an hour and they let me go.  In the bathroom I saw a pretty huge bandage and the drain coming out of one end.  I was a little surprised at how big it was.

I stayed overnight in the hospital's 24-hour observation unit.  The bedspaces are just separated by curtains but it ended up being a nice quiet unit, at least on the night I was there.  My husband and sister came to visit so that was a nice distraction, but the pain was building so I was keeping on a 4 hour schedule of liquid oxycodone.  I ordered just about every soft food on the menu and was sure I'd at least be able to eat chicken soup, but even the soft noodles wouldn't go down.  Really, nothing would.  I generally felt OK while my visitors were there, but as soon as they left I started to feel absolutely awful.  The pain in my throat was terrible and I kept complaining to the nurse and was literally counting the minutes for my oxycodone.  She said that they would not give pain medicine on a schedule, that the patient needed to be awake and asking for it, but I knew there would be no problem because there was no way I'd be able to sleep.  I kept asking her if there was anything at all they had that would make my throat feel better and it took her 3 hours for it to dawn on her to offer me popsicles!  They ended up being a lifesaver that entire first night.

The next morning the resident came in before 5am to take a look at me and he said he'd be back to remove the drain.  The drain was grossing me out, but the thought of getting it pulled out was even grosser.  The drain filled up with a quick 30cc right after the surgery, but after that it slowed down quite a bit and probably only did another 30cc through the entire night and morning.  Again I ordered lots of soft food and liquids but the only thing I could get down was the Dunkin' Donuts coffee my sister brought me.  The resident came back to remove the drain.  He clipped one stitch and then just pulled this long tube out of my neck.  It went across the entire front of my neck and I could feel it being pulled out.  It was gross, but it did not hurt.  I was released to go home before noon.  The hole where the drain had been was simply covered with a piece of gauze, and the incision was covered with steri-strips that I was told would fall off in a few days (they did not).

I came home with the usual, "I'll be able to go back to normal!  I don't need any pain meds!" feeling that people get when they are sprung free from the hospital.  By the time I got home, I was totally exhausted and my neck and throat were killing me.  Since I wasn't really able to swallow, we got all of my meds in liquid form:  Oxycodone, Tylenol, and antibiotics.  One tasted grosser than the next, so my stomach felt quite queasy.  Swallowing really hurt, and I often had the sensation that I was choking on my saliva.  My mom made chicken soup and I was able to drink the broth.  I know that some people say they are eating sandwiches the day of their surgery, but there is no way in the world I would have been able to do that.  That night I had to sleep sitting up both because of the pain in my neck, and because of the choking sensation I kept feeling.  If I had not taken the Oxycodone, there would have been no way I could sleep.  I actually slept upright for over a week after the procedure.

The next few days were much of the same.  Laying on the couch, taking medicine, and only eating soft foods and liquids.  I was able to wean myself off the Oxycodone after just 2 days, but continued to use the Tylenol.  It continued to hurt to swallow for about a week.  For the first few days I was not able to eat anything very solid or dry.  The first time I tried to eat chicken I choked.  By the end of the week I was able to eat small pieces of solid food if they were moist.  I would say in two weeks time I was eating normally.  I did not drive or do any heavy lifting (ie, pick up my kids) for a week.

At one week I had a post-op appointment.  The surgeon took off the steri-strips.  There were no stitches to remove as they were all internal and dissolvable.  He said that everything looked good, and as expected.  He discussed the pathology report with me which proved that the cyst was totally benign.  He also gave me the operative report.  He noted that since a fair amount of underlying tissue needed to be removed from my neck in order to remove the entire cyst, that he had to implant some AlloDerm to make it look right again.  This explained the rectangular firm thing I could feel in the front of my neck.  (It got softer over time.)  I saw him again in another month and he thought that things looked good.  He noted that my neck was still swollen, but that it was to be expected.  He said that if the scar did not look better at our 6-month visit that he could do something in the office to "correct" it.  I'm not sure what that means.

As far as my neck is concerned, it started off very swollen.  The swelling was from my chin to under the scar.  For a long time I thought I looked like a linebacker and I was worried I would always have a fat neck.  It actually took months, but it went completely back to normal.  My tongue was almost completely numb from something that happened during the surgery (maybe I bit my own tongue, maybe from a tool they put in my mouth, maybe from a temporary stitch they put in my tongue to pull it out to look at the back of it-I'm not going to ever know).  At first, it even effected the way I ate and spoke.  I was terrified that it would not go back to normal, but it gradually did over about 2 months.  A large portion of the front of my neck from my chin to below the incision was numb, also.  The surgeon said it was from all of the tiny nerves being torn when my skin was pulled back to do the surgery.  He said that it would take several months to go back to normal.  At almost five months, the sensation in the front of my neck is improving, but far from normal.  The scar is a straight-ish line, longer than I expected it would be at about 7cm.  It is on one of the folds in my neck but I personally think that it is still quite visible.  It has flattened out and gotten less red over time, but at almost five months still doesn't look great.  I was told it can take a year for a scar of this nature to look good and be barely noticeable.

So, here's what I learned from this yucky experience:
1.  If you have an ultrasound and it says you have some awful horrible solid mass in your body, it might not be.  Get more imaging done.
2.  If you don't have a spleen or you are super anemic or if you have some other issue that puts you at higher risk than a "typical" person, go ahead and get the full-on pre-op done.  The extra visit is inconvenient, but probably worth it.
3.  If you are having the Sistrunk procedure, make sure to get all your meds in liquid form.  I don't care what anyone says, swallowing probably isn't going to be very easy or pleasant at first.
4.  If the nurse is too dumb to offer you popsicles, ask for them.  They are SO soothing, and if you are like me, probably the only thing you'll be able to eat that first day.
5.  Hopefully you have a great family like mine and they'll stock you up with lots of soft, yummy foods for when you feel like eating.
6.  Stay on the pain meds for the first day or two and don't fall behind.
7.  If you have that gagging feeling after the surgery, sleep sitting up or at least partially upright.
8.  Be patient.  (I'm still in this stage.)  I'm sure it depends, but if you have a large incision like mine, it's probably going to look crappy to you for awhile.  It does start to get better.  And, if you lost sensation anywhere (tongue, neck) be patient about that, too.  Zillions of nerves regenerating take a long time.
9.  If you hate the way your neck looks before or after the surgery, buy yourself some nice scarves.  They are very fashionable, anyways.
10.  You might be terrified.  I was terrified.  And, in my opinion, that is OK.  They are cutting your neck open and rooting around near some pretty important stuff.  So, it's OK to be scared.  Before you know it, it will be behind you and you'll wonder how you walked around with that yucky looking thing on your neck.

So, since a picture says a thousand words...here are some pictures.  Again, if you are not here to read about the Sistrunk procedure or thyroglossal duct cyst, stop looking now.  I'm being very brave sharing these as they aren't exactly, ahem, flattering...

This is the end of October 2013.  The bump had gone away and then came back
with a vengeance.  The next week I saw the surgeon and he said it had to come right out.


This is when it was at it's grossest.  This is two days before my surgery and I was
very worried because it looked so angry.

One day before surgery.  It looked like it was going to pop out of my neck.  For this reason,
the surgeon had to cut away part of the skin that the cyst was attached to on the outside.

This is a few hours post-op.  You can see at this time, it wasn't really even
swollen yet.  If you look carefully, you can see the drain on the left side
of my neck.  I'm smiling because I was drugged and laughing with visitors...the worst
was yet to come.  The pain that first night was really bad.

Day after the surgery.  You can see the swelling.  It got worse before
it got better.

Just over one week post-op after seeing the surgeon and having the
steri-strips removed.  I thought it looked horrible.

Just over one month post-op.  My neck was still definitely swollen.

Almost 5 months post-op.  Much less swollen and flatter, but I think the scar still
looks pretty noticeable and crummy.