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!