The Butterfly Project

I started a little project this afternoon. While HMae napped Koen and I got to decorating! We colored and glued little pieces of paper onto these cute little butterflies that I found at Michaels. About the tenth butterfly in I thought to myself... maybe HMae has some friends out there that might want to color a butterfly too! If this might be you send an email to mdkhughes@gmail.com include your name and address and we will send one to you! I will include a return envelope so you know right where to send it back. If you are not crafty do not fret! Maybe you'd rather write a few words down for her.
We will be at CHLA for at least 7 days if not more for her surgery and since we will have a private recovery room I thought I might make it a little more "homey" with some colorful decor.
I cannot wait to see it all come together!


Much love,
Melissa Hughes

Ultrasound Day

Tuesday started off a bit earlier than usual. HMae had an appointment in Templeton at 7:45am. in the past her ultrasounds are done at CHLA but I requested that we be able to do them locally due to fact that it is way more convenient. Ultrasounds occur every three months in HMae's life and they will continue that way until she is 10 years old. At ten they will decrease in frequency to every six months. I must admit that although it is terribly inconvenient to pack up life and drive five hours to CHLA just for an ultrasound I truly appreciate the mere fact that their techs are familiar with kids. They have a way of making it so much easier on the little one. They have cartoons which is a major distraction from the warm icky jelly being smeared all over the belly. And a box full of fun toys that mom would never let enter this household due to their repetitive nature of horrible sounds. For example, that toy, you know the one, it's just a little can with pictures of barnyard animals on it. You flip it over and it moos, not just any moo but a long, drawn out moo. Similar moos come from mama cows giving birth to their calf. Yes, it would never enter this house. Only because I would find myself at 3 am digging through the toy bin in the dark to search and destroy the MOO that just wont stop mooing! Back to the point... they are prepared. They know how to keep the little one still long enough to capture the pictures they need. It's no easy feat trust me!
Even without all the fancy toys we managed to survive HMae's ultrasound. Did I mention we had to bring along brother! The Hubs had a work commitment and couldn't stay back for Koen this day but I decided to be brave and manage by myself. Would you believe he was perfect the entire time. He is starting to pick up on the fact that his little sister has to spend lots of time with medical staff. He knows he has to be brave when we go to the pediatrician's office. In the past going to Dr. P's was an event! He would refuse any weighing, measuring, and examining. Since going with HMae and seeing how upset she gets when doctors and nurses have to do their thing, I think he knows it's his turn to be brave so that he can show her everything is going to be ok. At first, I was reluctant to take him along. I wasn't sure how he would react to all of it and I didn't want to cause any more trauma for anyone. But I am starting to realize that these two are buddies. He is her real-life superhero. I think that on this Tuesday he comforted her. Just knowing he was there eased her anxiety. He sat quietly in the stroller playing with his little toy fire engine saying things like "Hey Sissy, Look fire truck!" and "I see your belly pictures!" The very inquisitive two year old is constantly asking where are we going? What are we doing? I didn't know how to explain it any other way than to tell him we were going to have the doctors take pictures of the inside of HMae's belly. Having this conversation with him got me thinking... how in the world will I explain all of this to her when she is able to understand. I'm selfish. I don't want her to have to feel different from anyone else. It's a good thing I have some time to plan. For now she is perfectly satisfied with the MOOing can and her superhero of a big brother.

P.s. Her ultrasound showed no changes. The kidneys and ureters are still enlarged. She is free of tumors and other abnormalites at this point in time.

Much love,
Melissa Hughes

ONE!

 I am ONE!

 Mommy attempted to make a "Princess and the Pea" cake.

 Brother stole a few bites!

 So big!

 HMae's very first baby doll.

She loves her baby!

The summer heat nearly melted us all but we survived Miss HMae's first birthday! Thank goodness for that massive water slide that kept the little kiddos cool. 

Here we are nearly one month later and thank you notes are still being written partly because life is insane right now and partly because Koen thought it was a good idea to crinkle my list of b-day gifts and their givers and dunk it in his cereal bowl! Illegible now of course.

I wanted to update you all on HMae's latest journey.

We took a trip down to CHLA just a few days after the big celebration. This trip was just me and my favorite girl. She enjoyed the trip much more this time because she got to face forward!!! My ears are grateful for the lack of screaming due to the constant streaming of The Lorax.

I know, I know, I am that mom.

She had an ultrasound early morning followed by our very least favorite test called a Mag3 Lasix. The Mag3 involves an IV and catheter:( She was less than thrilled! Prior to the insertion of her catheter we had the whole triage room giggling with HMae's silly faces and games. She is a very social girl!

Their giggles subsided quickly once her screaming began. This girl has a serious set of lungs.

This was after 23 minutes of solid screaming. I was so relieved to finally get her to sleep. I'm sure the staff was too. Especially after hearing me attempt to sing every lullaby in the book. Tone-deaf doesn't even begin to describe my singing ability.

A few days later we found ourselves up at Dad's condo helping Lynn clear out everything he left behind. She has found a place to call her own and I know she will thrive there. I was not and probably could never really be fully prepared to go through each box and finger through every little thing. Since that day I have learned so much more about him. Something I am very thankful for. Something I adore about him was that he kept every little thing I ever gave him. He hung on to the menu from our wedding rehearsal dinner. A letter I wrote home from summer camp. He printed every email I ever sent him. I love him for that.

Just two days after we got home from San Ramon we were back on the road again to CHLA. This time we grabbed Grantie K along the way. She always keeps us in good spirits. And she knows how to shop! Even better. Our schedule was light this time with only one appointment to follow up with HMae's urologist Dr. De Filippo. Just as we expected surgery was suggested to correct the kidney and ureter.

On November 26th, Dr. De Filippo will preform surgery on Haddie Mae where her ureter enters the bladder. He is going to try to open up the ureter so that the kidney can function properly by allowing fluid to flow more freely through her ureter and into her bladder. He will then re-implant her ureter into her bladder. Her incision will be much like that of a Cesarian section. The surgery has risks of course but at this point the wait and see what happens approach has a greater risk.

And for some reason I am having a harder time with this surgery. I know we have to do this and I know I will get it together before than but there is just something about it that is driving me mad. It might be the fact that her last surgery is still so fresh or just the thought that her tiny perfect skin will have to bear a scar.

She is one amazing little girl and we could not be more blessed by her presence. This little girl has taught me more about life in the last year than I have learned in all 27 years I have graced this earth.

Before you rest your head tonight... write a little note send it off to your grown kids, kiss the little ones while they sleep, then take a breath and live in this moment!

Recalculating Route

Sometimes things don't go as planned and sometimes they do. Sometimes when they don't, you find yourself better off instead. I am often reminded that everything happens for a reason because it does. Looking forward to the better-off part of this one.


We are nearing our the end of our third week post op and HMae is doing great. She has been eating solid foods and has moved on from the Medela Special Needs bottle and on to a regular one. She is eating and sleeping and playing just like her regular little self. Happy as can be.
Mom on the other hand is a little out of sorts. Finding the time to pump every four hours is interesting. Playing with two cute babies is much more fun than being hooked up to a machine while it sucks the life out of you for 20 minutes at a time. As a mom, I often find myself struggling with inner battles. Fearing failure and defeat. As a mom, you want to be able to do it all and look good doing it. But today I think my white flag is raised. It will wave proudly because I am surrendering in peace.
I started pumping about a month before the surgery. I had a very good supply stocked in our freezer or at least I thought I did. It lasted two weeks. One very hungry baby. The day I went to that freezer and grabbed the last of the pumped milk I could have cried. I don't know how it happened. It was all gone. I then was only a feeding ahead. So I pumped while she slept or played next to me and had a fresh bottle to offer. This was the routine for a few days. My supply was rapidly decreasing. Getting less and less each time was very daunting. I hadn't changed anything. My body was just not responding well to exclusively pumping. Factor in a whole lot of stress and soon I was lucky to get an ounce at each pumping session.
Today I had one last shot! I had called to make an appointment with the Lactation Consultant over two weeks ago and she finally got me in. This was my last chance at continuing to offer breast milk to HMae. We chatted about the things I had already tried and she quickly came to the conclusion that I should focus on solid food. Seriously...WTFreak! The one person I could count on to encourage me and guide me through this just told me to pop a bottle of formula and introduce solid food! Even she was exhausted just thinking about my life... Ha! I understand that HMae is almost 10 months old and that is a good amount of time to have survived solely on breast milk. In my head I was hoping we could at least make it to one year. I am brainwashed! The world has me thinking that she can't possibly survive on anything else. Wasn't there a lady just on the cover of a magazine breastfeeding her 4 year old. And we can't even make it a year.
Right now I know I have to do what is best for HMae. My only other option is to call up the OB and see if he can prescribe a med that happens to have a side effect of increasing milk supply. While such a thing does exist I am starting to think that wandering through Saturday's farmer's market finding organic whole foods and letting HMae chomp on those, sounds a little more promising than lacing Momma's milk with drugs.
When I do find myself in situations like these I revert to these words from a book that was being written by my Daddy almost as one would turn to their bible for help. And even though this little life event isn't a major change it is a change I don't take to lightly.

Why Recalibrate?

How did we ever find our way without GPS?  We used to always get there.  Maybe it took a little longer and we drove a few too many miles but we always got there.  There are a couple of reasons I can’t do without GPS.  The most important of which it has completely eliminated that discussion that sounded like, “You’re lost!  Why don’t you stop and ask for directions?”  “No way!  It must be just up ahead.”  It must have been a woman, who as a passenger endured hours and hours of ‘just up ahead,’ and decided to invent GPS.  Did you notice the voice is always a woman?  Yes, we men get the point.

When your GPS is engaged it knows exactly how to get you there.  You can even tell it, “No freeways, shortest time, shortest route, no tolls, etc.”  Even given these parameters it has the amazing power to make adjustments and still provide you with accurate directions.  One thing I find annoying about this amazing device is when she yells, “Recalculating route!”  “Wait a minute, I thought you knew where we were going.”  I think if truth be told recalculating route in the virtual world really means, stopping to ask for directions.  The important thing to remember is, after it recalculates the route you are always better off and your journey will be better.

One of the longest journeys we take is the journey of life and we are asked to do it without GPS.  How on earth do they expect us to take the longest journey without any route guidance?  On top of that as we hit bumps in the road or forks in the road, how do we know the best way to proceed?  Most of the time we are so busy trying to figure out what to do, we forget about how to do it.  The result is we ignore the potent saying:

Enjoy the journey.  Life is not measured by the number of breaths we take,

but by the number of moments that take our breath away.

My dream for this book is that it will serve as your GPS during those major forks in the road.  At each of these major events in life it will serve as your GPS to help you recalculate the route.  I hope this book is not a one-time read but will ride along with you for the journey of life and always be there for you.  It’s goal is to shorten the miles driven, eliminate some wrong turns and give you some much needed time to enjoy the journey.  Rather than missing the moment I hope your breath is taken away.

An excerpt from an unfinished book written by David Lauffer titled Recalibrating LIFE

As a Mom it's time to throw in the towel on this battle and move on to our next adventure because too much time has been wasted worrying and not enough enjoying!

smile like the sun

Everyday in PICU Dave and I talked about her smile. We missed it so much. This big ole smile that was surely formed by the big ole tongue she just had chopped off. We were terrified we wouldn't see it again. But then just 8 days post surgery there it was. She sat waiting patiently as I fumbled through the cabinets looking for those star shaped puffs she loves so much. The Hubs stood in front of her making silly faces to keep her occupied and then it happened! It was back! She was back! Our sweet happy girl.














And they just kept on coming.














The way her lips curl up on the corners just melts me!

My favorite is when her eyes smile too. Her Papa had a smile like that. 

Oh yes, and a new tooth popped in while she was sedated last week. Four teeth at nine months. Much quicker than big brother!








Needless to day we are one big happy family. Couldn't be more grateful for every blessing that fills our life. Especially those embodied in our fun- size mini humans!

Home

Streamers glittered our house. New flowers potted on our front porch. A sleepy little two year old clung to his Grandma. We were home! Grandma is a saint. She managed to keep Koen entertained for an entire week. Cleaned our house. Stocked our fridge. Not to mention all the sweet surprises she left for us to find.
It was good to be home. Time to adjust to our new life at home. Pumping, unpacking, playing, washing. Repeat. It has been crazy. Koen is adjusting to life with rules again... Haha Dave is adjusting to life back at work and I am adjusting to a whole new life. Before the surgery I pretty much had it all figured out. Meals, naps, play dates and such. We run a tight ship around here. I won't lie. We like a schedule. So here we are four days in and I'm feeling a little more normal. I'm getting used to pumping, washing bottles, and holding HMae all day. She is a little clingy. I think I would be too if you chopped off my tongue. I can't say I mind. Before the surgery she wasn't the type of baby that would snuggle in the crook of your neck for a nap. She's an independent girl. But now I get this... 

and this...

And while we are busy snuggling brother is doing this...

hahaha! I certainly hope my boobs don't look like my knees.  And just this evening when I put HMae to bed, I came out to the living room to find him doing this.

He is quite the mime lately. When he is not being precious like this he is busy giving me a run for my money. Typical two year old! Needless to say we are surviving. By the grace of God I have not lost my mind, yet anyways.

Tongue Reduction Day 4

The Plastics Team came in around 7am and gave us the go ahead for HMae's extubation. Maybe because I was looking forward to it so much, a part of me was terrified they wouldn't allow it for one reason or another. The Green Team which was the team of doctors and nurses that were following her in PICU came in a few minutes later with a plan. They sent us off to breakfast so they could prepare for extubation. I don't think I have ever eaten that fast in my life! We flew up the elevators and stood patiently aside her bed waiting for the respiratory therapist to come in. He came in and did his business and what I thought was going to be an awful- horrible- terrible thing, totally wasn't! And then the nurse said "You can hold her, Mom" I died! I had no idea I would get to hold her that fast. Silently craving a little snuggle for days then this happened...

A few hours later she woke up and was ready to go. She was a whole new baby. And of course very feisty. Once those sedation meds wore off completely she tried time and time again to rip out her NG tube. The fire alarm suddenly rang and I turned my head to see what was going on outside our room and OUT it was! The little stinker. After that she played and played and played. The ladies from the Child Life Program came in to bring her some toys. They spent a little time admiring a take-along mobile we brought with us. I hope someday we can donate a few to them. I know how much they would appreciate having them.

 After she played all day it was time for a rest. I cannot explain how happy this last moment made me. I knew then that everything was going to be just fine. We had survived and a few short days later we would get to go HOME!

Tongue Reduction Day 3

Happy Father's Day to the best Daddy in the world!

Just one more day... We kept saying this all day. It was the only thing we could hold on to knowing that in just one more day HMae would be extubated and we would be one step closer to getting our baby back. This was probably the hardest day in PICU. They had to back off her sedation medication so that she would be awake enough to breath on her own. This meant that The Hubs and I spent almost three hours pinning her down to the bed so that she couldn't extubate herself! It was then that I finally lost it and so did he. Our night nurse wasn't our favorite. So I tracked down the on-call Doc and had him come take a look. He decided that we needed to up her sedation meds so that she could be comfortable until extubation. We were so relieved! A few minutes later she fell asleep. She was breathing mostly on her own anyway so he did not think it would be a problem. It was then 11:30pm and we hadn't eaten anything for half the day so we decided to go downstairs for a milkshake date. It totally makes sense but they don't let you have any food in PICU. I had never thought about it before we were there. Imagine being without food for days and in walks "Uncle Joe" with a bag full of McDonalds french fries! Not cool. It was sort of a blessing in disguise because although we didn't get in three square meals a day when we did get to step out for a few, it was a good refresher. It was a good time to collect ourselves and reflect on the past few hours. We nestled into our sardine can but a few hours later I awoke to Julius. He was her respiratory therapist. Julius is a saint!  Julius noticed that Haddie was stirring a little when he walked by so he went in to calm her. He also knew that we were sleeping and didn't want us to have to wake up. So there he was soothing my baby to sleep and when I arose he told me to go back to bed. I would need my rest for tomorrow. He has a way with babies. The calming softness of his voice and his sweet words of encouragement were music to all of our ears. I hope God blesses that man in every way possible.

Tongue Reduction- Day 2

The Hubs and I managed to stuff ourselves into the sardine can of a bed we have here and actually slept until about 7am!!! We got word of possible extubation this morning so naturally we were pretty excited. HMae is not a fan of her new BFF the breathing tube. Our excitement was premature. Once Plastic Surgery got word, they said no way. Apparently the swelling is the worst on Day 3 and 4. Also there are issues with staffing on the weekend and they want to make sure all the key players are in place before such an event. So while we are a little bummed we realize they know what is best. On a side note, the Hubs and I are starting to notice a prerequisite for employment in this hospital. #1 you must be 25 years old or younger. #2 you must be on the top ten most beautiful people list! #3 you must be the nicest person on the planet. Obviously, we dont mind any of these prerequisites. Especially not #3.
I can't decide if the staff here loves me or hates me. Almost all of them have asked if I am a nurse or involved in the medical field. Honestly I think I may have done a little too much research:) Shocker, I know! Really, I am just fascinated by it all. As our day nurse placed the feeding tube she told us we were the best assistants ever. We just don't see it any other way. We don't want Haddie going through this alone. We want to make sure she is as comfortable as possible.
Good news of the day: They seem to have finally found the perfect pain management for now anyway. HMae hasn't required as many rescues today. We are definitely thankful for that. They are keeping her heavily sedated to ensure that no damage is done with the breathing tube in place. Also for her comfort.
At home, Koen is keeping Grandma pretty busy! Or vice versa. Sounds like he is having a blast. Tonight they went out to dinner to celebrate Auntie K's birthday. The Hubs and I are quite jealous. They went to Tahoe Joes for dinner! We were salivating thinking about the yummy steak and monster mudslide cake. It also sounds like he has been very spoiled. That's what grandmas do best!
I played some videos of Koen for HMae today and I could tell she was excited to hear his voice. It is comforting to see her reaction to us. Whenever she hears Daddy she perks up and I can tell she is trying to say her Dadadadas. Whenever she sees me she scrunches her eyebrows into a grump face. I think she is wondering why I can't just pick her up and feed her. It breaks my heart a little but I can already tell how much better her tongue is going to be. Even with it as swollen as it is she can still close her mouth.
There is so much love for our little girl. We can't thank you all enough. Your Facebook messages and instagram comments are truly keeping our spirits up. It is so nice to know there are so many of you out there cheering us on.

Tongue Reduction - Day 1

6/14
12:15 PM
We packed the car. Said our goodbyes to Koen and the amazing team of babysitters. Then zoomed our way through LA traffic. A five hour drive landed us at the Marriott in Burbank. We got settled in and Dave ran off to grab some dinner. Bedtime for HMae ended up being a little later than usual. Bedtime for us a little earlier.

2:48 am
One last nursing session for my sweet baby girl. Then it was off to dream land... for her anyway. There was no sleep for me for obvious reasons. So I got dressed and fiddled with my hair, then spent a few minutes just me and the Man upstairs counting my blessings and begging for mercy.

4:30am

McDonalds for breakfast... yuck but better than nothing. A short drive with NO traffic:)

5:30am

We checked in. Almost instantly I realized, here we are in this hospital for what seems to be a major ordeal, but one thing I get to find comfort in is the fact that I WILL get to take my baby home at the end of all this. Only by the grace of God. Too many are not so lucky.

7:30

You know you are in Hollywood when all of your nurses and doctors are hotter than those on a day time soap opera:) That and there is a high speed pursuit on the news. We waited and waited. Nurses, doctors and anesthesiologists came in and out until finally one pipped up to let us know Dr. Hammoudeh was stuck in emergency surgery at Cedars Sinai. Haddie had her "happy juice" and was feeling pretty "happy, happy, happy".

8:35am

The Hubs's nerves were on overload and I was about to beg for some "happy juice" for him too when the Doc himself arrived! Hallelujah!!! The nurses did a great job distracting me by complimenting on my awesome 3am hairdo and cute bracelet. It was a ploy to keep me from bursting in to tears as they whisked away my baby to surgery. It worked.

What I thought was going to be the longest 2 hours of my life honestly wasn't. Since the beginning of this whole journey I pretty much threw my hands up and figured we are better off in His hands now. The Man with a plan. Somehow this has given me peace. I know I have the strength to get through almost anything at this point in life.
We wandered off to the HBO cafe for a morning snack. Incredibly this hospital has the most amazing food. The Hubs's keeps comparing this place to the show House and it cracks me up. Everything is just so clean and sparkly and happy. The way I like it!
Then it was time for me and my new BFF to get down to pumping business. Might be my least favorite part of this day. I didn't think about how time consuming it would be to have to pump and clean and store. But it will be worth it in the end.
9:40am

And then that was it, we wandered back to the surgery waiting room. Lost a few brain cells watching Maury Pauvich talk about Ho's and baby daddy's. And then in the funniest Colombian accent a sweet little lady says HUGE! "Haiti Huge"! We sat there for a second and then I was like "Crap, that's us!" Fumbling over ourselves we managed to make it to the front desk and the sweet Little lady took us upstairs to chat with the doctor. Thankfully he came in and said everything went well and the surgery itself was very straight forward. They were able to remove a large portion of her tongue without interrupting any vital pieces. He used the modified keyhole cut to allow for the reduction.

Apparently at this point HMae was very awake and giving the doctors and nurses a piece of her mind about what they did to her. It took them awhile to get her comfortably sedated. We were back in the waiting room watching the Ho's and baby Daddy's hash it out over paternity tests.

11:20 am

The little Colombian lady came and got us with a concerned look on her face and whispered "Did doctooor tell you bebe was gunna be in PICU?" I assured her that we were aware of this and I could tell she was relieved. She walked us to the other side of the hospital and up we went to see our baby. I walked in and honestly that lump came up my throat and I just shoved it right back down! It was the same feeling when I walked into that Hospital where Papa was. It just gets you in the gut when you see someone you love all puffy faced and sedated with a breathing tube. I quickly reminded myself that we weren't in "that" situation but a much happier one.

The next few hours went pretty well. Our nurse was amazing. She was adamant that HMae will feel as little pain as possible while she was in her hands. Of course I liked her:) at this point she was requiring a cocktail of happy drugs and morphine "rescues" every two hours.

2:15pm

She slept and slept and woke up and wanted more drugs and slept! I took the chance and me and BFF Medela got back at it again. We checked in with the Fam and big brother. Ate lunch. Checked in with more Fam.

5:15pm
Our new Nemesis... the breathing tube! HMae does not like her new BFF!
There isn't a lot of downtime between med changes, positioning, oral cleaning, suction, and diaper changes so time flies sometimes around here. Thank goodness.

7pm

Back to HBO Cafe for dinner which was amazing! It was then that we realized this was our first dinner date since having babies. How romantic it was! Haha. We reminisced about the last two years and the Hubs threw in a few more House innuendos.

10pm

Finally HMae's cocktail was at just the right dosage that she was settled in for a good nap. We prepared our tiny bed and joined in on the slumber party.

3am

It has been a long day. Easier than I had imagined but long. Our tiny bed as it turns out is much more comfortable with only one person on it... imagine that. So me and the Hubs have a little rotation going on. And now it's my turn!

Playing Dress Up

Tonight Auntie K, Shauna and Maysie came over for dinner.

While the Hubs BBQ'd for us, we played dress up with girls. It was so fun.

The girls in matching dresses. I'm sure this wont be the last time!

This little blue shirt was my Dad's when he was a baby.

I can't tell you how happy this makes me to have it.

I cannot thank Auntie K enough for sharing it with me.

 This pink dress was Auntie K's.

I am going to try to see if I can re-create it.
I just love the style so much.

This little dress was mine when I was a wee one.

Here I am at two years old in the very same dress.

I know it's silly but that little blue shirt couldn't have come at better time.

A sweet reminder that while Papa isn't here now we can hang on to on little piece of him.

"dream feed"

There is this moment that happens from time to time. You know that one where you wish you could store it in a mason jar and open it only when you need it the most. I have been finding myself savoring this special moment each time it happens. I wish I had the power to hold it forever.
Today was quite fun. HMae and I went to see Megan for our weekly physical therapy session. Then Auntie Shauna, Henry and three week old baby Maysie stopped by to play. The boys had fun digging holes in the yard while HMae & Miss Maysie napped most of the time. After nap I bribed Koen with cookies to get a haircut. It was a very fun but very full day.
Then it happened, this moment I am obsessed with. After bath I zip up HMae into her Aden + Anais sleep sack and we settle in to a comfy spot to start what some like to call a "dream feed". Basically I get to stare at her sweet little face, play with her chubby little fingers while she nurses to sleep. I can't explain the feeling very well but I love it. It's almost as if I can stop the whole world for fifteen minutes. No laundry is folded, there isn't a pot on the stove and the house is silent. I can hear every tiny breath get deeper and deeper into a dreamy state of sleep.
I may be obsessed with this moment because I know it will end all too soon. In less than a week I will not be able to offer HMae a "dream feed". Sort of selfish, I know. But I am hoping we will be able to get it back soon after. If not, I know that we will find another moment to call our own.

Tongue

 

I went to town this afternoon to run some errands. Just me and HMae and I was quickly reminded of exactly why we are going ahead with the tongue reduction surgery. HMae had fallen asleep on our errand run. I went into one last store toting her in her car seat. When a women commented on her sticky out-y tongue the very second we walked in the door. She was sweet and by no means did her words offend me but It has me wondering if HMae had a huge nose would people comment nearly as much? If only they knew what my sweet girl is going to have to go through in a few weeks. I would tell them but I always feel guilty weighing their hearts down. The truth is she doesn't just have a big tongue. Her tongue seems minor when in comparison to the other implications of BWS. She also has a much greater chance of developing childhood cancer by the time she is ten. She will have to have blood tests every six weeks to monitor her AFP levels. Ultrasounds every three months. Physical therapy, occupational therapy, speech therapy. Another possible surgery to correct her kidney function. At first, I could have crawled into a corner and cried for days. But I instantly realized none of that would do any good. We try to flip it to the positive side as much as possible. Yes, we have long car trips as we travel to CHLA but we also get to have our girly time! We make laps around Nordstrom as we scour the shelves for the newest headbands and bows. We rest our heads in comfy hotels. We have the best road trip buddies that keep us company during the long drive. We wear the cutest band-aids after blood draws. And don't forget she gets to wear the most adorable of bibs to catch all that drooly drool! It is what it is and we couldn't be happier to be on this journey with our sweet girl.

 

As many problems that this little tongue has caused and will cause in the future I must say I'm going to miss it! You know that feeling when you are looking at someone and you know there is something different about them but you can't quite place what it is. A haircut maybe? Shaved off a mustache? I feel like that is how we may feel after this surgery. This little tongue is so much a part of her personality. We have started to notice that as HMae gets older she is gaining more control over it and has started to make the funniest noises. As cute as it may be breathing and eating and talking and sleeping are much more important. :)