Thanksgiving

(I actually wrote this post on March 10th the day before we were discharged from CHLA. I wanted to wait to post it until I could plug in photos to go along with the thank yous but now those photos are lost in my dead laptop. So for now I will post and hope to plug in the photos later)

It's thanksgiving time here at the Jelly Chronicles as we are about to complete this part of our journey. It's just going to be a long list and not a great read but I need to get this out there so you all know what you have meant to us. And there are so many to thank...

The Ronald McDonald House charities. What would have done without your support. I'm in tears as I writes this thinking about how you literally saved us, financially, emotionally, physically. My mind just boggles at the thought of us having to pay for a hotel for 60+ days or having to be over an hour and a half away from our baby. Thank you thank you thank you. We will never forget and we will always do all that we can to pay it forward to the next family in need. I promise from the bottom of my son's fixed heart.

Children's Hospital of Los Angles

Brenda - the wonderful security guard at the front desk. You happy smile and friendly greetings everyday. The way you remembered our names and made us feel welcome will always be one of our happy memories about CHLA. We will always consider you a part of our CHLA family!

CTICU, Dr Starnes and his team- you gave my son life. You took this broken family and you've made us whole and given us a chance for a long future together. You welcomed us with open arms and with everything you did. The way you do shift reports, the comfy chairs at the bedside, the endless care you had while dealing with us two frightened and exhausted parents. Thank you.

A special thanks to nurse David for the gift of holding my son for the first time. I hope you understand how that simple act will be among the greatest moments of my life and that I will never forget you or your kindness.

NICU - we've been through some rough waters together but you helped us make it through. From the Dr's, residents, and nurses we were blessed to have you fighting to help us get to the other side.

Our NICU nurses especially Tania and Jackie or two primary nurses.

Anyone can pass out meds you to gave of yourself as well as being skilled practitioners and we are so blessed that you were there to care for Mason when we could not.
Also Nichole, Susan, Alisa, Sylvia, Judith, Lerma, Carmen, Colleen and so many more. I wish I could remember all your names. Thank you for always

Friends -

The blog followers. What would we do without you? A bunch of Internet "strangers" have become a part of team Mason and a part of our families. You have been a gift to us. Your prayers, good thoughts, comments have carried us through tough times. You have given us the gift of companionship through this and trust me the journey would have been so much longer if we had to have walked it alone. So much love and thanks to everyone of you (even the lurkers!).

Catherine and Jason, Victoria, Nikolas and his mom, all the people on the CHARGE listserve your support and helpful information has been invaluable to us and will continue to be guide to us in Mason's life. Thank you for reaching out. I'm sorry I haven't been able to connect as often as I would have liked too but plan on doing so more in the future.

Steven and Gracie Mason's CTICU and NIICU buddies and their 'rents.
It's amazing how you become invested in these kids that share your space and at least a part of your journey. You are two brave and beautiful babies (with great parents) and I can't wait watch as you grow and thrive. Our hearts will be with you on every part of your journeys.

Kirsten and her son Andrew - we think about you often beautiful boy and I truly believe that you have been a guardian angel looking after Mason and blessing us.

Our Disney friends! You have always been one of the best parts of George. More than just friends you are our family. Thank you for the snacks, support, and love you have sent. You are team Mason!

My IE girlfriends. Some of team Mason's greatest supporters and always my shoulder to cry on. What a blessing the Knot.com has brought into my life. I love everyone of you and am grateful to call you my friends. I would also like to purpose a "Mason's mommy needs a night off GTG" asap!

A special send out to my angel Jewelyn. I miss you everyday since you left us but I feel you and I see you in G. I'm sorry I've been wrapped up a bit lately but I promise that I will get back to my auntie duties asap.

My besties Val, Jenn, Katt I don't know if I deserve your friendship but I am grateful everyday to have it. You are the jewels of my life

My sister/friends Lo and T. My backbones and my better halves. I love you and I wouldn't have made it without you. Tiff thank you for all the therapy sessions (and for Fedex!) are a gift to me and my family. I will never be able to repay you but I plan on spending a lifetime trying.

Our families -

George's family Abulita, Tio Alex, Tia Karla thank you for taking Pierce and spoiling him. We wouldn't have made it through these last few weeks without your support.

My sister Jennifer and her family Pat, Lauren and Jonathan -
You've re-arranged your lives and welcomed our son into your home without question or complaint. I know the nights have been long battling illness and the terrible two's but your love for Pierce and Mason has made the separation a smooth as possible.
You allowed us to care for Mason by caring for Pierce and we will be eternally grateful that you are our son's other family.

Mom - There are so many things to thank you for I don't know if I am capable of expressing what you mean to me and to us except to say - Everything I am, everything I will ever be, I owe to my mother.

George -
The person I should have thanked first and most I never have.

My dear husband. My love and best friend. You are our rock. You are our foundation and the strength supporting this family. What and amazing man and father you are. We are so blessed to have you.

We have created this family together and together we have fought tirelessly to hold it together. The road ahead will be long but as long as I'm traveling with you I know we will be alright. We have both put our needs and wants on hold focused on the now but we are coming back around to us.
I can't wait to get there and celebrate us again with you.


Pierce - my firstborn. My son. You made me a Mommy. I waited 38 years to meet you and it has been so amazing. I never understood the depths of love till I held you. I don't know what these last two months have cost you but I promise Mommy and Daddy are going to be there loving you and cherishing you every second from now on. Thank you for being your loving, happy self and for the gift of time you have given to your brother. You are already the best big brother there ever has been and you don't even know your a brother yet. You and me together, forever will be.

And finally Mason - my dream. You are exactly what I wanted. I know being your mommy is what I was meant to be. I have been amazed over and over again these last two months at what I have been able to do. I have ignored pain, gone without sleep, fought, battled, prayed, done endless re-search, and found veins of strength I never knew I had. People keep asking how I do it? I answer them simply. I your Mommy and my love for you is endless.

My brave little boy what terrible things you have had to endure just for the chance at life. You future is so full of hope and promise. You are EXACTLY who you were meant to be and you are perfectly made.

For anyone I forgot forgive me. We have been blessed with support from so many.

We could not have done it without you

Home

Home

Saying it is like taking a deep breath for the first time in a long time.

Home

So much weight and so much worry. Gone.

Home

Ultimately home is where my kids and my husband are but there is something to your own four walls. The one place where you can really relax. Let your hair down and scratch where it itches.

Home

For a week today. Almost seems impossible that it has already been a whole week. I wish I could say it has all been light and joy. Most of it has, but there have been struggles too.

But before I get to the current stuff I want to catch up so...

Thursday we found out that the discharge would be happening (baring any major complications) so we started checking off our to do list.

The car seat test. You threw a MAJOR fit. I was terrified that because you were crying so hard you would desaturate and fail the test but you didn't. You stopped crying after three minuets or so then slept through the remaining 3 hrs and passed with flying colors.

Umm attitude problem? Oh yes, I believe so.


Friday morning I got to the hospital first thing to start checking things off our list while Dad packed up and got us moved out of the Ronald McDonald house FOR THE LAST TIME!!

Once your Dad was done he joined me and we learned all the things we would need to know how to do to take care of you at home like your feeding tube, breathing treatments, oxygen canisters, medications, and all the machines that go with them. I wish I had taken more pictures but I was a mad house of learning, phone calls, papers to sign, meeting with the dietitian, physical therapist, medical supply rep, case managers, Dr's, and on and on. My head was spinning with all the information.

Dad practicing the feeding pump

Once we had checked everything off and signed the papers you were all ours for the first time!

Look Ma no monitors!! (well less monitors anyway)

Getting you dress for your home coming!

Your outfit says "Little Bro". Perfect homecoming outfit.

We were so thrilled that we were able to have your favorite day nurse Tania there to see us off. We know we will always miss her but hope to never see her again (unless it's for a party or a visit or the like)

Nichole one of the many other wonderful nurses that we were blessed to have take care of you.

I think I will say farewell here Tania. Not goodbye.

The only one dark spot on the joy of our day was that our darling Gracie is still waiting to go home. Gracie and her mom Melissa became dear friends to us during our last month at CHLA. We can't wait till we celebrate their homecoming day.

You and Gracie your next crib neighbor. Love you Gracie and miss your sweet heart.

Your first time in the car seat for real

Away we go with our cart and bags and bags full of stuff

Almost there

Our waking papers!

Almost a family

About 25 minuets into our drive the pulse oximiter died and you took a really large poop. That's when we discovered we had no wipes. I called the medical supply company while Dad improvised.

After you were all cleaned up you rather enjoyed the ride

Aunt JJ and cousin Lauren decorated the house for your homecoming. Perfect way to welcome you home

You were much more excited than you look here. Look at all the air in your feeding pump tubing. We were such novices then.

Home

Home

That night you got your first real bath. You cried at first but then deiced you loved it. You don't cry at baths anymore. It's one of your favorite parts of the day.

The perfect outfit for a trip to our version of Disneyland. Home the happiest place on earth.

Saturday Auntie T and Uncle David brought us lunch. Love them!

Saturday we enjoyed some time outside while Daddy worked on the backyard. I was sitting here with you watching the wind ruffle your hair when it felt real for the first time and I just started crying. But they weren't sad tears they were happy ones. The first happy ones I've cried in a really long time.
We didn't get Pierce till Sunday morning. We wanted to bring him home to as peaceful of a house a possible and felt we needed a day to get used to taking care of you and to clean before he came home. One of the first things we did was take our first picture as a family of four together.

more shots from the day

My boys together at last!
our beautiful baby boy


love this face so much!
Our sweet neighbor Erin brought us welcome home flowers and a beautiful card signed by her group. She also brought us dinner. We have been so blessed by so many people here to help us and we are eternally grateful.


Look at the name of the flowers...Rosey Outlook

perfect for a homecoming

Luck of the Irish...

I guess I just don't have it because just as I was going to post these pics yesterday my computer indicated that the battery was low so I plugged it in and then it died.



Turns out I grabbed the power cord to Mason's feeding pump and not the laptop so I killed the laptop. George thinks I shorted it out or something. I just hope if we can't fix it then at least we can recover the pictures stored on there. All of the pictures from the hospital and Mason's first two months of life are there and not backed up.

Anyway so it's going to be even harder to update the blog now. :(

Happy St Paddy's day a day late. Anyone got a little extra luck they can send this way?

p.s. Mason is still on oxygen but since I had to change his tape anyway I got a few pics without his tubing on. My sister is standing just off camera putting the oxygen back on every few seconds. Thanks Aunt JJ. Your the best!

p.s.s. no children were harmed during the taking of these photos but bribes were given to get Pierce to sit for them because otherwise he looked like this the whole time.

or like this....

Where's that Irish whiskey?

I really did try...

To catch up the blog. But this is the best I can do for today.


Our first picture of us as a family of 4

I was going to find matching outfits for all of us. Do my hair, fix my makeup, etc to try and get the "perfect" family picture and then I thought no.

I want it to be a real picture of my real family. The pro pics will come later.

So here we are. Pierce is wearing a PJ top because he got mud all over the top he had on and Mason is in mid-cry.

Pierce is cracking up because I set the camera on a TV tray (I can't find my tri-pod) and set the self timer then ran like a mad woman to get into the shot.

The picture is a bit soft because I forgot to re-focus just before hitting the shutter.

George and I are both in sweats because we haven't gotten to unpack our cloths (though the rest of the house is pretty much cleaned up)

I think it may be one of my most cherished photos ever.

Because we are whole. We are home. We are happy.

*************************************************

I have two super long post coming up but I just haven't had a second to work on them. Today it was kids vs. George and I and well...we got our butts kicked!

Mason was really unhappy for most of the afternoon and Pierce was all over the place. At one point (while I was out shopping) George couldn't find Pierce anywhere and ended up running up and down the street trying to find him. Turns out he had gotten out the dog door and was in the backyard playing in the pirate ship!

We took Mason to his pediatrician for the first time and ended up with referrals to 9 different specialist. We got our chart flagged because the Dr said he will have to set aside extra time for Mason whenever he comes in.

I came out of the office giggling to George (who was trying to entertain Pierce) because we got flagged. What can you do but laugh?

Between George and I we had 3o phone calls from insurance, medical supply companies, home health nurses, Dr's offices, and the phone company.

Whew!

Tomorrow is a new day and for most of the day it will be just the boys and I. Please pray they take it easy on me.

It's gonna be crazy and I couldn't be happier.

The happiest place on earth...

That's where we're headed today.

Truly the happiest place on earth. If I didn't realized that before I do now.

Yesterday was a overwhelming whirlwind of phone calls and papers to sign, equipment to order and learn. I imagine today will be too.

I found myself at the edge of tears going back and forth from excitement and terror. Most of this stuff I'm very familiar with and it's still so overwhelming. But I know we will manage. Your dad and I will figure it out together.

Yesterday I was reading the first post on this blog and I think what I wrote is as perfect of a way to end this part of our journey as it was to start it.

When your Dad and I talk about you and make plans for the future we say.."because Mason IS coming home" we always emphasise the IS.

It's our mantra, it's our talisman, it's our fact. It is the solid place we hold on to while this violent storm of bleak diagnoses, possible surgeries, and scary outcomes rage around us.
YOU ARE COMING HOME.

You are. I believe this. I know this.

You are coming home Mason. You are coming home.

I love you my beautiful baby boy. You are coming home.

Today we will finally make these words come true.

My next post, I hope, will be when we are safely tucked in our own four walls. I don't know when that will be but I promise pictures and a full recap of our day.

Here we go.......

Excuse me did I say Thursday?

What was I thinking??

We are STILL waiting to have the sleep study read. I was told our study is in a stack of studies waiting to be read (read shut up,sit down, and wait your turn).

Things are happening though.

Debbie, our awesome case manager, made a list of all the medical supplies we will need to go home with and is getting that all set up and I got my Pertussis vaccine which they only give you when you are about to go home.

So we're closer but otherwise just sitting on our butts twiddling our thumbs.

If no progress is made by this afternoon I'm going to go all "Mad Elephant" on them.

Should be fun. Or not.

In the mean time enjoy some cuteness that is you.

Your favorite activity other than being held by me

You have full on conversations with your aquarium. It's so adorable.

If we go home before Saturday last night was our last night with your favorite night nurse Jackie. You already miss her (so does Mommy)

We're going to Disneyland!!

No not that Disneyland.

The nurses have a superstition that if you say the H word (H O M E) then you will jinx yourself so they don't say that you are going (H O M E) they say you are going to Disneyland (and anyone who knows us well knows why this is hysterical). At this point if they told me I had to be hung upside down, dipped in pancake batter, and wood shavings, I would do it. So...

We're going to DISNEYLAND!

They snuck in the sleep study on Monday night (and I'm so thrilled it's done I can't even get upset that they didn't call me even though they promised they would). We don't have the official results except you did well but will definitely go home on oxygen.

As soon as we get the official results we will do your car seat study, get all the at home monitors, oxygen, etc ordered and we will be able to go.

I'm thinking maybe Thursday? I'm of course bugging them to get everything done asap so we can go.

Yesterday was the resident Smith's last day with us. We are so sorry to see him go but are thrilled for him that he has completed another step in his residency. Dr Smith was the one who had to put up with me most of the time and funny enough we ended up friendly. I credit Dr Smith with single handily (with a well timed jaw thrust) keeping you from getting re-intubated at one point during the longest night of our lives.

I've said it before it makes so much difference when the people on your medical team actually care for your child. I've worked with enough Dr's to know a great one when I see one. He's a great one.

You got your two month immunizations yesterday and have been pretty uncomfortable. We are giving you around the clock Tylenol and I've been holding you non-stop. Hopefully you will feel better today.

So keep your fingers crossed for us! We can't wait to get to the happiest place on earth!