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.