The Jelly Chronicles

Happy BIRTH day Mason!

2012-01-06T22:19:00.000-08:00

31,536,000 seconds
25,600 minutes
8760 hours
365 days
one whole year

One year ago today you were born.

I kept mentally checking myself today and thinking..."10:30 just having the C section now"..."2:30 seeing you for the first time" and on and on. So many memories. So many moments.

A year ago today my whole being was focused on keeping you alive.

Today my whole focus was on how much life you have in you.

Now I'm a sentimental old fool and I will always feel that though today was the day you were born (birth day) your birthday is on the 10th of January the day you had the surgery that gave you life.

So today we celebrated your birth with a cake and on the 10th we will celebrate your birthday.

What an amazing day it has been too! Today you've been on your stomach and happily lifting your head and looking around like it was nothing (something which you usually hate and will never do). Then to really show off you got into the crawling position TWICE! Something you've never done before.

You sat at the table with us in your highchair for the first time and gummed a piece of pizza crust and tasted the frosting on your cake.
We were even able to do your cake smash. I didn't get a chance to edit the pictures but just love the way they turned out.

Even though they aren't edited I just have to share a few.

Your cake smash was a good lesson for me and, I think, a good example of what we will do everyday in your life.

A lot of people might think a child that can't sit or eat couldn't do a cake smash and wouldn't even try.

We we did. We adapted the situation to you and it turned out amazing!

There is nothing you can't do.

If the Mason doesn't fit the mountain. Mommy will make the mountain fit Mason.

We have a fun day planned for your birthday on the 10th with pictures to follow and then your party on February 25th.

We have so much to celebrate.

We have so much to be thankful for.

Thank you for this boy.

Thank you for this day.

Thank you for this life.

Happy birthday to meeeee!!!

2012-01-04T21:42:00.000-08:00

I have a post planned but haven't gotten a chance to get to it. But since it's my birthday if you wanted to get me a gift you could send a birthday card to an amazing little boy. You can read all about him here.

Ours are already in the mail. I hope we can make it his best birthday ever!!

2011

2011-12-31T15:12:00.000-08:00

2011

365 days of my life.

Somehow it only only having been 365 days feels inadequate.

Feels like a lifetime ago since I posted this.

Two life times ago.

Maybe most people would look back at this last year and all that we have experienced and be glad that this it's over.

Almost 4 months out of the 12 spent in the hospital. Too many days when I really thought we might lose Mason. Almost 4 months of of the 12 when we were separated from Pierce. The CHARGE diagnosis. Three major surgeries, two minor. 100's of Dr's appointments. Sick more days than well.

Not me.

I'm actually a bit sad that there is only a few more hours left.

I'm not ready to let it go just yet.

I'm tearing up as I type this.

What a blessed year this has been.

One of the best years of my (almost) 42 years equal only to 2008 and the birth of Pierce

We are whole. We are happy. Our version of healthy.

My life is full and so is my heart.

Thank you life, fate, karma, chance, God, whomever, whatever for this amazing year and all the gifts we have been given.

I'm only too well aware of how differently it could have gone.

I could be sitting here typing about all that we have lost rather than all that we have gained.

I will NEVER, NEVER forget that.

I hope that you to feel blessed for all that 2011 was for you and I hope that you are as excited about 2012 all that can be as I am.

I plan on spending every last second of this year fixing in my heart and mind all that this year was and then I'm gonna kiss my husband and welcome the start of 2012.

Just think of all that might be...

I'm so excited!!!

Merry Christmas!

2011-12-22T19:06:00.000-08:00

Now that it seems most people have gotten their cards I will post ours here. I didn't even get started till the last minuet (story of our lives this year) but it came together even better than I had hoped.

Cards are one of my favorite parts of the holiday. Not only do I like sending them I love getting them and this year I'm so pleased to add our CHARGE family to our card list. I think next year I will have to find a bigger place to display them though. My fireplace is running out of room.

I've read a few comments on Facebook this year about how some people don't like to send out cards because...it's not good for the environment...you could do the same thing with an email..not worth the time..and a few other bah humbug excuses.

Well I recycle and otherwise do my part for the environment all year long so I will enjoy this indulgence, will never feel the same pleasure opening an email as I do finding a box full of cards to open, and will always always find getting pictures of friends and loved ones well worth the time.

I just love my cards and they are one of the last decorations I take do. I loved everyone I have gotten (and look forward to the late ones too) and thank you all for including my family in you holiday cheer.

Merry Christmas. Happy Holidays, Happy Hanukkah, Kwanzaa, and or whatever holiday you celebrate from the Lozano family to yours.

Now I hope to update the blog in the next day or so but...well it is me we are talking about so just in case.

Happy New Year too!

Save the date!!!

2011-12-20T23:07:00.000-08:00

I'm gonna cry.

No seriously I am.

We had originally planned Mason's birthday party for January 7th but we've all been too sick this month so we moved it to February.

No big deal I figured I'll just change the date on the save the dates.

But I changed it to the wrong date.

I'm gonna cry.

Once upon a time I was this super organized person. I had the parties, and all the details planned, months in advance. Now I can't even get the date right.

((sigh))

OK, now that I'm done whining the correct date for Mason's party is

Saturday February 25th

It's been an amazing year. Just about a little bit of everything has happened.

We would love it if you could be there to celebrate the day with us.

On this day....

2011-11-17T16:30:00.000-08:00

On this day four years ago I began my life as Mrs. George Lozano (and although I didn't know it till a few weeks later my life as a mother).

We promised each other forever. For better or worse. In sickness and in health, richer or poorer, till death do us part.

It's amazing how much we have already lived those vows.

I heard on the radio back in September that serious illness and financial problems are the top 2 reasons people end up getting a divorce.

I think it's a testament then how strong our love, how deep our commitment, that we have faced both in the last year over and over and we've come out of it stronger and more committed to our family and each other than ever.

Next month we hope to take a day off together to celebrate just as Amy and George but honestly we both feel like we are celebrating even though I will be at work and George home with the boys who are both fighting colds (and Mason is still trying to kick this ear infection).

We are celebrating tonight mostly healthy and happy at home as a family of four and getting back on our financial feet.

We are together and that is all that really matters.

Happy anniversary my love. It's mind boggling how much we have packed into just four short years. I'm excited to see what we will do with the next four.

As long as I'm with you I'm in.

.....................................................................................................................................
So the rest of this post has been uploaded and on the blog for two weeks now just waiting for me to get around to posting it. Life just keeps getting in the way. It's way past Halloween now but the pictures are just too cute for me to not post.

I can't believe it's on already days past your 10 month-versay and I'm finally getting around to posting you 9 month picture. Oh well, at least I have the picture right?

What an thrilling month October was too. Physically and mentally your making great leaps forward and as hard as this last heart surgery was your so much stronger now and it makes all those hard days so worth it.

We've been fighting an ear infection since September and will now be going to a second ENT Dr to see if he can help us get you healed. Fingers crossed we get this infection gone by December 28th when we have your next hearing test scheduled.

We are putting our head down and getting through November so we can have an awesome December and 2012 together.

Can you believe it's less than two months to your first birthday? Seems almost impossible.

Well I hope to get your 10 month pictures done in a few days and will update more then.

Pierce didn't feel like cooperating for this picture. As it was I had to combine two different pictures to get one where they are both even looking up. Thank goodness for Photoshop. It gives me the family nature didn't. :)

Cutest pumpkin ever!

and here's Pierce at two months in a pumpkin for comparison and to prove that I torture both my children equally.

and the pumpkin patch...

I added the 2011 to the picture. Pretty cool huh?

Pierce's version of pumpkin chucking

I love it when you look all surly.

This is a combination of three different pictures. That's what it takes to get all my boys in one shot.

The Lozano Family pumpkins 2011.

Get a Melissa & Doug 25% Off Coupon When You Take the North "Poll"

2011-11-17T07:30:00.000-08:00

Melissa & Doug want you to tell them which of their educational toys you think is the best! Just click on the image below to place your vote in the North "Poll!" You'll Get a Melissa & Doug 25% Off Coupon** to use at MelissaAndDoug.com just for voting!

Happy Halloween!!

2011-10-31T21:44:00.000-07:00

Despite our hectic schedule. Mason being a little sick and shear exhaustion we managed to have our traditional Halloween. It just wouldn't be us not to go all out. Happy to say we had tons of trick-or-treaters and more and more houses on our street decorated for the night.

Pierce completely loved trick or treating. It wasn't even about the candy really. I just think he loves any occasion to be social.

Mason only made it to a few houses but was the cutest Jelly anyone has ever seen.

Again we couldn't have pulled it off without the help of my family. My mom, my brother in law Pat, my sister,and my niece Lauren (who made the most adorable Mini Mouse but I'm not allowed to post her pic) made the night possible.

Happy Halloween from our family to yours!!

Spooky update

2011-10-19T21:08:00.000-07:00

Life continues at our regular relentless pace.

We went back to see Dr. Bailey this last Monday. Everyone feels that you look great and are healing well.

After you got your sutures removed last Monday your incision was open a little bit so we kept Steri-strips on it and now this week it looks like it is completely closed.

You are steadily gaining weight and weigh a whopping 14lbs 90z. I little more than a full pound of weight gain in less than a month!

They measured you at 24 1/2 inches but honestly your height varies so much depending on who is measuring you that I don't know how long you really are. You are growing though and that's what's important.

It seems amazing to say but as terrible as your scar looked after the surgery it doesn't look all that bad now and I figure it will continue to heal and fade till it's not really much of an issue anymore.

We found out that no matter what your IV antibiotics will end October 26th! Thank goodness just 7 days left and then you can get the PICC line out and once again have a full bath. I can't wait to see if you love it as much as you did before the surgery.

You are beautiful and amazing. Happy 97% of the time your almost back physically to what you were doing before the first surgery in August. Your back to rolling and scooting around again. If I put you on your play mat within a few minuets you will have worked yourself off of it till your feeding tube is stretched out as far as it can go. I can't express how much I love your personality.

Our new ENT (whom we ADORE) has ordered a new hearing test for you to see how putting in the ear tubes and draining out all that fluid will affect your hearing.

Dad and I are prepared for there to be no improvement but are holding on to hope that your hearing loss might not be as sever as the first test indicated. As soon as we get the results we are all about getting your hearing aids.

Your dad and I are hanging in there. It will be years and years before you read this so I will admit to you that this IV medication regimen is exhausting. I'm getting about 3 1/2 hours of sleep on average and it's really wearing on me.

There have been a couple of days where I just didn't think I could do it one more second. But then the moment passed and we just go on. If it weren't for my family, your Granny and Aunt JJ, I don't honestly think we could continue to do it.

And to top off our busy schedule I've finally started back to work. I haven't worked in over a year and a half so I felt a bit rusty but after being a nurse for almost 10 years it's something you don't really forget.

From now till the end of the year I will be working full-time or as close to it as I can manage. Luckily for me full time is 3 12 hour shifts and I work nights so it's doable. The hardest part will be the lack of sleep an adding more to our already hectic schedule but it's necessary.

Without the financial help from our family members we wouldn't have been able to stay with you while you were in the hospital and we want to pay them back as soon as we can.

This will make it even harder to update the blog. I will do my best to post at least somewhat regularly but don't worry if you don't hear from us for a while.

So it's Halloween time. Have I mentioned how much I love Halloween?

Oh but I do!

It's my favorite holiday equal only to Christmas. But in some ways I think Halloween is even better because it's a holiday where everything we do is for others.

The decorations, the candy. It all makes me giggle with glee. Every year we decorate the lawn with a haunted graveyard. It's a hit every year and one of my most favorite things to do all year long.

Your dad grumbles a bit about the work it takes but he loves it too. He just doesn't giggle with glee. :)

One of the other things I love to do at Halloween it to get holiday PJ's and outfits. I wasn't sure we would be able to afford to do it this year but your Aunt JJ found a Ebay gift card your dad gave me for mother's day three years ago that I had left at Aunt JJ's and forgot about.

I was able to get all the outfits I wanted except skeleton PJs for Pierce, which your Granny ended up buying for us, and didn't "spend" a penny.

So now I can now dress you and take pictures of you two to my spooky heart's content.

I also found a ton of stuff I got 75% off last year from Target Halloween sale so even I have something to wear.

Me --- giggling with glee again.

I wonder if you two will love me or want to kill me for these pictures. I bet your wives will love them.

It really looks like Pierce really enjoys holding you in the pictures doesn't it? Too bad he will let go of you seconds after I take the picture.

Thanks for my PJ's Granny!

Look at how good your sitting up! Your getting so much better at it.

He looks so sweet doesn't he? Don't be fooled. It's almost impossible to get him to pose for a picture anymore. We usually have to bribe him with something. Time on the computer playing games works well for now.

The outfit you are wearing here is the same one Pierce wore on his first Halloween. I'm so happy I kept it.

Pierce was 2 months old (and freakishly tall) and your 9 months old and it fits you both perfectly.

These Halloween booties were given to us by your Aunt Lisa. I just know that she would have loved seeing her "Sam" wearing them.

We have been going a little crafty around here. It thing is we don't have any money to spend on things like crafts so we have had to either finish projects we have already started or use what we have left over from old projects.

I saw this sign on Pinterest from the website I love naptime and fell in love with it. Your Dad was able to make me one out of scraps left over from a tree we had cut down. I then used old paint and a little chalk board spray paint I bought last year and never used to make the count down board.

See here it is on the porch. I just love it!

We also painted a wall in the kitchen with metallic paint and then covered it with chalkboard paint. It only took a a few minuets to do each coat. The longest part was waiting for the layers to dry.

Pierce loves it and I'm sure you will to. We have plans to do more to it but are already using it daily.

Dang fine "A's" for a 3 year old aren't they?

We are also working on potty training Pierce. We have been putting it off since we were so busy but are now going for it. Pierce gets it and stays dry most of the time but hasn't deiced to cooperate 100% of the time yet.

So that's it for now. We have been hoping the weather would cool down before we go to the pumpkin patch but now we only have 11 days left so we are going Monday now matter what.

Pictures to come!

You amaze me

2011-10-02T21:05:00.000-07:00

I think you are the bravest, patient, most good natured person I have ever known.

The day we came back from the hospital you slipped back into your routine falling asleep at 7:30 pm and sleeping through the night making it so much easier on me to take care of you with a few solid hours of sleep every night.

Even after 3o days of pokes and surgeries, sedation two times a day, constant vitals and nurses disturbing your routine, you are the easy happy baby that you have always been.

Seriously the only time you cry is when you have gas pain.

Oh but you are the new and improved Mason!

You are so much more reactive to us. Before we could get you to smile and giggle if we tickled you or stimulated you in some way. But now you smile and laugh while we talk to you, and you LOVE making noise to yourself in the mirror.

We are hoping of course that it's because you can hear us more than you could before. It certainly seems like you are reacting to sounds more than you were before but we aren't sure if you really are or that we are just hoping you are.

Our day starts at 6 am with your first IV medication and ends around 1 am with your last. We have developed a routing which has helped us settle in fairly quickly.

Just for giggles here is the med schedule. The spacing is all out of whack because I copied and past from the word document I made it in.

6 am IV Vancyomycin
7 am IV Ceftazidine
GT Captopril 3 ml
Diuril 1.2 ml
Pepcid 0.4 ml
Diflucan 1.8 ml
Pol-vi-sol 0.5 ml
Zinc 0.3 ml
Vit – C 0.35 ml

Feedings Beneprotein 2 Tsp
Lactobacillus ½ pack

INH Pulmocort

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT Bactroban

8 am IV Gentamycin
----------------------------------------------------------------------------

2 pm IV Vancyomycin

3 pm IV Ceftazidine

GT Captopril 3 ml

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT site Bactroban

4 pm IV Gentamycin
----------------------------------------------------------------------------
7 pm
Feedings Beneprotein 2 Tsp

GT Diuril 1.2 ml
Pepcid 0.4 ml

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT site Bactroban
---------------------------------------------------------------------------

10 pm IV Vancyomycin

11 pm IV Ceftazidine
GT Captopril 3 ml

INH Pulmocort

12 am IV Gentamycin

Worst case scenario is 5 more weeks with this many meds. Then slowly one by one our list should get shorter and shorter. Considering we went into the hospital with only Pulmocort two times a day we are having to get used to giving so many meds.

Tomorrow we go to see Dr. Baily and Dr. Kwasman. You are supposed to get at least half if not all of your sutures out of your chest. I'm not looking forward to that.

Dad and I have been busy getting the house ready for Halloween. Can't wait to take you to do all your first for the holiday. First pumpkin, first costume, first trick or treat.

It's going to be amazing!

Perfect

2011-09-26T17:53:00.000-07:00

I've become a suspicious old lady and so I didn't prepare in any way for us to come home today.

Didn't really pack (still packed from weeks ago).

Didn't buy cookies for the nurses.

Didn't post on the blog.

Nothing.

I wasn't going to do anything to jinx our chances of coming home.

But home we are.

With a chest full of sutures that needs cleaning three times a day.

A pic line with three different IV antibiotics that we have to give three times a day for an hour each (9 hours worth).

11 new meds that we give several times a day each.

Three new supplements for your feedings.

Blood draws once a week.

PICC line changes once a week (unless I get it wet like I did today...oops!)

Visits to the surgeon, the cardiologist, the ENT, the infection disease Dr, and your pediatrician.

Not to mention that we are due for your three month follow ups with all your other specialist. GI, cranial facial, endocrinologist, neurologist, opthamologist, pulmonologist and .....

We need to get going on your hearing aids.

And re-start your physical therapy.

It goes on and on and on

and you know what?

It couldn't be more perfect.

Because we are home.

We are a family of four again.

You are going to get better and better.

and life is pretty damn good.

No I take that back

Life is pretty damn great.

WE ARE HOME!!!!

Isn't that just perfect?

Just breath

2011-09-22T09:38:00.000-07:00

Sorry for the lack of post lately. We've been on vacation.

Well not really but we did get away from the hospital for a bit.

On Monday I took Pierce to Disneyland for the day while Daddy sat with you then I came and sat with you after shift change till around 10:30 at night.

We had so much fun I deiced to ask cousin Whitney if she could stay with you on Tuesday so Daddy, Pierce, and I could spend the day together at Disneyland.

Cousin Whitney was the best-est cousin ever and stayed with you the whole day from morning till around 11 at night so we could even spend the night there and play all day.

Thanks cousin Whitney!

We missed you every second we were there but it was so nice to get out of the hospital and breath some fresh air and soak in the sun for a bit (even if I did burn my scalp). It was the first time Daddy and I got to spend more than a few minuets together since you went into the hospital for your first surgery.

Don't tell him but I've missed him.

You are doing pretty well. Your feeling really good which is the best thing of all. Your playing, cooing, making spit bubbles (your new favorite pastime) and generally just being your charming self.

At first they told us you would be able to go home Wednesday or if not Thursday for sure.

When I came in Wednesday morning they were concerned about a small amount of redness they saw on your incision and wanted us to stay till Friday just to be safe.

This morning they brought up the idea of either sending you home Friday and you would be sent home on 3 IV antibiotics that I will be giving you around the clock and we would have to come back once a day M-F for about 3.5 hrs for your oxygen treatments x 6 days plus visit the heart clinic to have your wound monitored once a week.

Stay till Monday morning. Get all your oxygen treatments done as an inpatient (since they do them twice a day M-Sun as an inpatient) and go home Monday afternoon with the antibiotics and coming back only once a week for the wound follow up.

As much as I want to grab you and run from this place it only makes sense to stick it out a few more days and get these treatments done so we can have some semblance of a normal life.

They are going to send us home with an IV pump (and the only reason why they are going to is because I'm a nurse and they know I can do your IV's the same as they could) and we will be giving two of your antibiotics three times a day and the other one once a day.

For 3 to 6 weeks

I keep telling myself to just breath and to not get overwhelmed.

It never ends up being a hard as it seems it's going to be.

Just breath.

Whatever it takes to get you home.

Scars

2011-09-18T09:46:00.000-07:00

My head looks at your chest and is grateful.

I know that if this is what it takes to keep your chest wall together and give it time to heal than this is what it take. The picture just doesn't do justice to how bad you chest really looks.

My heart is sicken.

I feel nauseous looking at it.

My baby should just get to be a baby. He shouldn't have this life where pain is just expected and his chest looks like Sylvester Stallone has been using it for a punching bag and then some mad scientist did a crazy hack job stitching it up.

We've started referring to your chest as Frankin-chest like we refer to you Aunt JJ's knee as Frankin-knee.

They tell us we will be able to get plastic surgery later to improve the look of it.

Great another surgery.

There is not much to report really. Your vital signs have remained stable and your white count is down so for now it's all about pain control and watching and waiting to see what happens.

I find myself starting intently at your scar trying to see if I see any signs of redness like we did last time.

See if there are any signs of infection

Sometimes I have to shake myself and tell myself stop looking for unwanted trouble.

But before very long I'm back at your side looking

I think this latest hospitalization has left both with scars.

A comment on comments

2011-09-17T16:54:00.000-07:00

I have heard from several of you that you are having trouble leaving comments on the blog. It makes me sad to think we have missed out on hearing from some of you because of this.

I too have had problems leaving comments on other blogs mostly Andi Bean's blog (if Andi's mom is reading this I have been desperately trying to leave comments on your blog to no avail. I so want to send my support to you and my heart is breaking that Andi is going through so much to get that damn leak taken care of) and on Nikolas's blog but at least there I am able to comment as anonymous.

After doing some research I have found that this is a wide spread problem and blogger isn't really doing anything to fix it. I tried to find a way around it but so far the best I could come up with is too add the choice to post as anonymous on the blog and then you can add your name to the post. I'm just hoping I don't get a lot of spam doing this.

In doing research on how to fix this I also found out how to add a reply feature to the comment section so now, when life isn't psycho busy, I can reply to comments.

I'm hoping I can find a way to fix this soon so I too can leave comments on the blogs I follow.

My mom is at the hospital with Mason and I will go and see him tonight and update on how he's doing.

Sternal dehiscence

2011-09-16T17:34:00.000-07:00

Yep, it's as bad as that sounds.

They took you to surgery about 11:30 and estimated that it would take about an hour and a half till you were back in your room.

Aunt T came and kept me company and kept me from going crazy. At about 12:40 then sent a text to say that you were open and surgery was starting.

and then we heard nothing.

for over an hour and a half

n.o.t.h.i.n.g

I was going out of my mind. I've sent off many patients to get a debridement and it's usually an in and out procedure so I knew something was going on for it too take so long.

I went to the front desk and asked them to call for and update (thanks for the idea Auntie T) and the report was they were just closing you up.

So we hung out for a bit then I just couldn't wait anymore so I went upstairs to find your nurse Rea. She had heard that you should be coming up soon and that you had needed some blood and an albumin transfusion.

So Aunt T and I stood in the hall waiting till they wheeled you by and we both thought you looked good. Pinker then before surgery and already off the breathing machine.

Very soon after Dr. Bailey came to talk to us and explain what they found.

The wires holding your sternum together had come loose on the one side and your chest plate was floating free and the sides were bumping up against each other. (gee wonder why coughing hurt you so much?).

This constant irritation causes inflammation and infection and that is why you were not healing very well.

The opened you up and cleaned out all the infection and debrie they found. Dr Bailey told me that the infection didn't go to the bone but some cartilage was involved. So after a good cleaning they flooded your chest with betadine and use a special closing technique to close the sternum (even though I asked about this twice I can't remember what the special closure is called but Aunt T remembers so I will have to ask her) and then further re-inforced it with sutures on the outside of your chest.

I asked Dr. Bailey a couple more questions about how this will affect you long term (it wont), will you have a void where you lost tissue/cartilage (you wont). And then we chatted about a few different things.

I then remembered to ask him about the blood transfusions and Dr Bailey, as easy as you please, told us that they had nicked your right atrium (upper right part of the heart) and they had needed to replace some blood that you had lost.

I was a little startled to hear this but know that it sometimes happens so at first it didn't faze me all that much.

Then Dr. Bailey, again as easy as you please, said and I quote...

Yes the anaesthesiologist had to put his finger in the hole till the blood transfusion came. It was a bit scary there for a minuet but it turned out OK.

At this I gasped grabbed my heart and a hold of the banister and told Dr Baily while as a nurse I find that fascinating, as a mother it makes me want to pass out.

We all got a good giggle over that one.

So now your back in your room. You were miserable with pain but Rea got you Morphine every hour and your now settling in more comfortable.

The plan now is to re-start the oxygen treatments twice a day and if everything goes well and there are no complications we could get discharged in a week and continue your treatments as an outpatient.

So you hear that Mason .....NO complications.

No complications and we can take you home.

On a personal note George and I are overwhelmed and more touched that we have the words to say at the out pouring of love, support, and prayers we have received from all over the world. I have no idea why our journey has touched so many but I want you all know how much it means to have you travel with us as we build our road with hope.

I feel like you all lifted our son and held him up in the love and the light.

What an amazing gift you have given us.

What an amazing gift you have given our son.

I can't wait till he is old enough to understand what wonderful people you all are.

Not better but no worse

2011-09-16T10:09:00.000-07:00

The Dr's were all in to see you first thing in the morning and all agree that taking you to surgery to debried the wound is the best course of treatment at this point.

Through the night you remained lethargic but stable only needing occasional oxygen support. You haven't spiked any more fevers but we have been giving you Tylenol around the clock so it might just be keeping your fever down.

You are almost never awake and cry when you cough it hurts you so much.

They weren't ahead and changed your dressing to get a look at it before they take you to surgery. The Dr said she can see your sternal wires and she thinks that might be part of the problem. They are planning on opening your chest back up and cleaning out all the dead skin and infection and then closing you back up after they make sure the infection hasn't gotten to your bone.

You got Morphine with your dressing change so your not in pain now but finally resting.

There is a baby who's heart needs Dr. Bailey and then when they are done with that surgery they will take you down.

Praying that this is what you need to turn the corner and start getting better as soon as possible.

From bad to much much worse

2011-09-15T18:50:00.000-07:00

This morning pus started to leak out from under your dressing. Dr. Bailey held your oxygen treatments, had the dressing changed, and wanted to see how you did for the day. We also got an infection disease Dr. on your case now to make sure we are doing everything we can to get you better.

You are now on three antibiotics and they have increase the vacuum on the dressing.

Your miserable and lethargic again. You've only been awake about 20 minuets total today.

Dr. Bailey came in to see you this afternoon and thought you looked well enough to wait to see how your wound looked in the morning. If there wasn't any improvement or if it looked worse he would take you to surgery to do debridement in the morning.

So we went on with your day. Tylenol seems to keep your pain mostly controlled except when you cough.

Then around 5 I started to think maybe that your chest around the wound was getting redder. At about 5:45 I was sure it was. I pointed it out to your nurse Mark and he put a call out to Dr Bailey.

The plan now is to take you into surgery first thing in the morning.

At first we were just concerned that you had been doing so well and were now sick again.

We are now scared.

Terrified.

You've just gone downhill so fast. I'm scared you may have gone septic.

How much worse is it going to be before it gets better?

Please pray.

Our heart is on the line again.

Not going home

2011-09-14T13:00:00.000-07:00

You spiked a fever last night so they want to re-start your antibiotics.

We are here till at least Friday maybe as long as a week depending on what your labs show

I came this morning with your bags all packed and cupcakes for the nurses only to find out as I walked in the door that we we were staying.

You can see your not feeling well today but Tylenol seems to help.

Don't worry if I don't update the blog for a bit I'm kinda taking this hard.

You'd think by now I would know better then to get my hopes up.

Yesterday, today, and tomorrow

2011-09-13T23:03:00.000-07:00

Sorry for the lack of updates. I just haven't had it in me.

I don't want to sound too dramatic but that first oxygen/torture treatment traumatized me. Watching Mason in pain just sucked up the last of my energy and reserves and I've been scraping by on minimal energy ever since.

The good news is as terrible as the first treatment was the rest have been wonderful. Uneventful as a matter of fact.

But I'm getting ahead of myself. I have a lot to catch up on so forgive the super long post and tons of pictures.

They stopped your feeds Tuesday night at midnight and then we waited for your procedure. The plan was to put in tubes in both of your ears, and since it was an ear nose throat Dr putting in your tubes, get a bronchoscopy to see your laryngomalacia and trachea.

They didn't end up taking you till six that night. In the end you went 19 hours without eating. No bueno.

The first bit of good news is we got Dr. Wareham the ENT Dr I have been trying to get your services switched too. I practically jumped for joy when I found out she had done your surgery and begged her to let us switch to her practice which she readily agreed too.

The second bit of good news is that, while she feels that your epiglottis is very floppy (the laryngomalacia) and causing blockage in your airway and the stridor we hear when you breath, past your epiglottis your trachea is STRUCTURALLY NORMAL!! Woo Hoo!

We no longer have to worry when you get intubated (although I am still going to avoid you being intubated when ever possible).

She also thinks if we fix the cleft in your palet that we would take away one of your airways and cause some severe blockage. She is going to talk it over with the cranial facial team but feels we should wait till you outgrow the laryngomalacia before we fix your cleft palate. While it would have been great to fix your cleft sooner rather then later to avoid possibly causing speech problems making sure you can breath is way more important.

She also was able to visualize both vocal cords and said neither is paralyzed. Woo Hoo!

The last bit off good news (more than a bit actually) is your ears where FULL of fluid. So that means possibly some of your hearing loss may be from the fluid build up!! We don't know if it will change anything but there is a least a chance that it will and that's good enough for me! We will have to get another ABR now but the possibility that you could get have less hearing loss is exciting.

Since we were in the hospital so long they went ahead and did your echo (thank goodness because it saved us almost $500) and the results were great! Dr. Bailey said it looked excellent. Love it!

Your PICC line wasn't working so they tried to put in a new one. Look what they did to you! 12 sticks on one arm alone. I flipped when I saw this. Actually I started bawling. I just wish you could just be a baby and not have to deal with all this pain.

After the horrible PICC line experience we headed off to the first oxygen treatment. You all know how that went.

At first I was very fascinated by the whole process taking pictures and asking 100 questions about the process.

So Thursday night after the horrible oxygen treatment I told them that I wanted to accompany you for the future HBO treatments or I would not consent to them.

So of course when we got there, at 5:45 am Friday morning, they wouldn't let me stay so I refused the treatment. I guess they thought I was kidding??

In fact the nurse that was there was being a total rude jerk to me and I told him as much. So off we went back to the unit.

and then I became THAT mother.

I just couldn't care what they thought. I had to make sure you weren't going to be in pain again. The only way I could do that was to be there.

At 8 am they brought us back. This time the nurse who was a total jerk to me was super nice. I'm not sure what brought about the change and I don't really care as long as I got to be there with you.

They deiced to sedate you and give you Morphine half way through the treatments.

By about 40 minuets into the treatment when I realized you were fine I started to feel like I had taken a sedative and felt all shaky. I think I must have just been super tense and stressed out and once I knew you were going to be fine I started relaxing.

But I was drained. I insisted your Dad get off early and let me go home. Honestly I was so tired I wasn't sure I would be able to drive home but your Granny talked to me on the phone and kept me awake.

I realized at one point that I have been dwelling on that first oxygen treatment and reliving it and doubting myself. I don't know why I didn't stop it except they had drilled into how bad it was so I didn't.

But I should have.

Monday I realized I was just going to have to let it go. Our plates are too full for me to be obsessing and stressing out over something I can't change.

So I'm letting it go. But it really was so terrible.

The good thing is you have no memory of it and going into the tube doesn't bother you at all. You either sleep or watch TV the whole time.

On Friday you had a bedside swallow eval and did great! You took a whole 7 ounces and loved it till it came out of your nose. Then you were done.

You did so well they ordered a video swallow eval on Monday! Fingers crossed.

Your Aunt Tiff came and brought me lunch and kept me awake till your Dad got here. She had too much fun styling your hair in different ways. Here's the punker look.

and here you are channelling Justin Biber. Baby, Baby, Baby oh! (the only JB song I know)

Dr. Wareham did an awake scope to see how your vocal cords moved. Did I mention how much I love her? Well I do! On Saturday your Granny came and stayed with you so I could have the day off. She's the best-est! Your Granny bought this hat for Pierce before he was born and I wanted to get a picture of you in it too.

Cousin AJ came by and brought you a card and this monkey.

Which you love.

It was wonderful to see them. Can't wait till we can spend time together outside the hospital.

Monday you had your video swallow eval.

They had this little chair for you to sit in.

and thin, thick, and pureed foods for you to try and eat. I thought you looked like the monkey in the space program.

Is it's just me?

But you failed the swallow eval badly. You aspirated thin, thick, and pureed foods. Bummer but I'm glad you at least got a chance and we will work on it for the future.

The put a wound vacuum on you. It constantly vacuums away the drainage and infection from your wound. They are hoping the wound vac, and the oxygen treatments will speed up the healing process for you. Unfortunately while your wound did look better it didn't have the red, beefy, new skin they were hoping to see.

The plan now is too get discharged on Wednesday home with the wound vac and for us to come back once a day Monday - Friday for more oxygen treatments.

I'm not sure how much longer they will keep the wound vac on or continue the oxygen treatments but it looks like at least two more weeks.

It's a lot to add to our plate but as long as we are home we will manage.

Did you hear that baby?

Home

HOME!

Dorthy was a genius!

Another Night Together

2011-09-09T18:53:00.000-07:00

Mason,

You are doing much better today!! It is like you are back. You are reaching playing and pulling what ever you can get into your mouth. You even turned sideways in your bead and pulled off your pulse oxygen sensor.

By the way you nearly gave me a stroke as I was truing to figure out why your oxygen level was dropping and dropping. I was looking for loose wires I was making sure the unit had power I even suctioned you and nothing. This took a couple of minutes. Then I saw the glowing read light in your mouth and figured it out. And I thought you would be the good one, you and your brother are going to make sure I stay on my toes. We have an understanding, save the drama for your MAMA.

So you had a treatment this morning and all went well. You seamed content and you where watching Finding Nemo. At about five we started the next treatment. I had to leave after a little bit but you were sleeping through it so hopefully all will go better.

No sedative tonight I could regret that later on. Maybe i can convince them to give it to me instead!

Your Mom went to sleep as soon as she knew you were OK. She has been by your side night and day while I have been working. She truly loves you. So do I.

-Love Dad

Really bad day

2011-09-08T21:00:00.000-07:00

I had post planned. Telling you all the things that have been happening the last two days.

I knew what pictures I was going to post.

Mason in the hyperbaric oxygen chamber next to the picture of Michael Jackson in the chamber.

We went for the treatment.

Mason was his happy sweet self.

they started the treatment

and he started screaming

and didn't stop for the next 90 minuets.

They can't stop the treatments really. Like a diver coming up too fast it can kill you, if your wondering why I didn't stop it.

I got them to give him morphine about 20 minuets into the treatment but it didn't help.

Mason writhed in agony.

I sat next to his bedside sobbing praying for it to stop but he just kept screaming.

They say that the treatments don't cause pain. In fact the nurse had been there since 1998 and had never had a patient experience pain before. They are guessing maybe his wound was causing the pain but they don't really know. The second the pressure started going down Mason was fine.

We have the next treatment tomorrow morning at 6. They are going to sedate him and give him pain meds every 10 minuets.

I not supposed to be able to go with him but I told them I WILL be at the bedside for every treatment from now on or I will not consent to anymore treatments.

I also told them they have half an hour. If he is in pain I will stop it. Of course with as bad as his wound is he really needs them.

This poor kid can't get a break.

I feel like I watched someone torture my kid for a hour and a half and didn't stop it.

I feel sick to my stomach. I keep having flashbacks. Seeing him arch almost in half screaming in pain.

I think this will go down as the worst thing I have ever experienced in my life.

and it didn't even happen to me.

Imagine how bad it must have been for him.

The thought will haunt me till the day I die.

Unbalanced

2011-09-06T22:44:00.000-07:00

Yesterday 9/5 your Abuelita and Tio Alex came to stay with you so your Dad and I could get away from the hospital. They said you had a really good day and hardly fussed at all. Of course your Abuelita held you for most of the day so I'm sure that helped.

Your Dad and I should have done a 100 different things but all we wanted to do was to spend some time with Brother. We didn't do much, lots of family hugs (missing you of course), some couch wrestling, playing in the backyard, and a nice family lunch together.

I felt completely unbalanced. Like when you have one foot on the dock and one foot in the boat and praying you don't fall in. I enjoyed being with Pierce so much and the few hours we had together flew by and seemed so inadequate.

At the same time I felt pulled to be with you.

Were you in pain, were you getting your meds? Did you need me? Does your brother need me more?

I'm faced with the impossible choice. To choose between my children.

No matter what I do. It just doesn't seem enough for either of you.

and this is why we strip him for pasta night!

Today is your 8 month-iversary. I made a sign for your bed and brought in donuts for the nurses to celebrate. This was of course not the way we planned spending the day but your here, and your going to get better and come home. We'll take it!

Your Aunt T stopped by and brought you a little gift.

Your nurse today was Rae. She was awesome. A real advocate for your pain control. Boy did you keep her running.

So the new plan.

You wound is not getting better despite all the treatments. Today in fact you coughed and bright red blood started seeping out of your wound. Scared the crap out of me!

Dr. Bailey had decided to turn your care over to the wound team and I'm grateful. Wounds is what they do and I'm hoping their treatments will help you finally turn the corner and start improving instead of progressively getting worse.

They have increased your calories to 27 Kcals. They have also added protein, zinc, and vitamin C to your feeds to help aid in wound healing.

They have switched your dressings from wet to dry to a wound vac. The are hoping by vacuuming away the drainage you will start to heal.

They are also going to start you on hyper baric oxygen treatments (yes like Michale Jackson!) but to do these treatments you need ear tubes placed so you are on the list to have the tubes placed tomorrow.

and then we wait

and see

and hope

to get back on sold ground again.

a little smile

2011-09-06T15:20:00.000-07:00

Mason,

You and I have been spending our nights together and you have had some good nights and some not so good nights. I wish that I could trade places with you and not just because the chair i am sleeping on is so comfortable. You are just not yourself, but who wold be in these circumstances.

Your Mom and I are really worried about this latest complication. I never seen a wound open up and just get larger and larger. You are now on a sedative to help you sleep at night. The past two nights you have looked a lot better. You have more energy and that is a good thing. Today you even reached for my face and pulled me down so you could give daddy kisses. Best kisses I have had in weeks.

Today they are going to change course on your treatment. We are going to see the critical wound team. unfortunately it is a Small team of people and we are going to have to wait to be seen by them until tomorrow. You are getting a new pick line right now. Unfortunately your other one is leaking.

I am returning to work and for the short run it will be you and Mom. take it easy on her OK, through her a smile every now and then.

Love Dad

We aren't going home today

2011-09-04T16:05:00.000-07:00

We aren't going home anytime in the near future.

You wound is bad. Real bad.

The first few dressing changes it didn't look like much really. The we got a bad one with lots of pus and drainage, then another one that didn't look so bad.

Then last night, while working with nurse Jessica (<-adore her) we found tunneling in your wound.

Not good.

In fact really bad.

Dr Bailey came in this morning and did the dressing change himself. I tried to get here on time but just missed it. The nurse tells me he really went in and cleaned the wound out and opened it up.

If it doesn't start getting better they will have to go in and open you up more and debride the wound.

It's just all bad.

Before we found the tunneling Dr Bailey said we would need at least 5 more days of antibiotics. Now I don't know what the treatment plan is or how long we might be in here.

You on Morphine.

I finally put my foot down and insisted on some pain meds and funny enough you now have more than I really wanted.

Morphine for your dressing changes, Tylenol with Codeine for general pain, and a sedative to help you sleep at night.

I'm good with you getting the Tylenol #3. After seeing your wound and what it takes to clean it I'm all for the Morphine too at least for a day or two.

The sedative I don't really want and don't think I will let them give to you but I will wait and see what happens.

I can't pretend that this is anything but hard. We are at a point, physically, mentally, emotionally, (and just to make it really fun) financially, where we just don't know what we are going to do.

But what choice to we have but to keep doing the best we can everyday and get you home as soon as possible.

Today I left your bedside to get some lunch. I was only gone 10 minuets at most.

I had asked the nurse to keep an eye on you but when I came back you were screaming, red, and dripping sweat, you were so upset. I'm pretty sure you had been screaming the entire time I was gone and that the nurse didn't check in on you at all.

This is why I don't and won't leave you. The nurses don't even try and get us to step out anymore. We are the parents that don't leave.

I miss Pierce so much it hurts to think of him.

It's another one of those days where I'm just going to be sad for a while. I will get over it.

I forgot to mention in my last post a big THANK YOU to my niece Whitney who brought Pierce here and then sat with you so brother and I could spend a little time together. It's amazing how those little visits can do so much to restore me and hurt so much at the same time.

The card brother made you

Your Granny came and stayed with you all day yesterday allowing Dad and I some time away from the hospital. She even held you for two hours while you slept. Again she took care of you while taking care of me. We are both lucky to have her.

Another baby passed away today. I can hear the family crying as they pass by in the hall.

I ache for them.

How did I get here? This place where loss is so common.

I'm going to finish this post and hold you.

and hold you

and hold you

and say a prayer of thanks that I can.

Some good moments, some bad moments

2011-09-03T06:35:00.000-07:00

Wednesday just before we got admitted.

It's been a long couple of days.Your getting better...and your not. We see small periods of our happy sweet baby followed by long periods of you being just miserable.

As good as it is to see you feeling better the times when your not are like acid eating away at my stomach. I wish I would could just take all the bad spells from you.

On Thursday morning Dr Bailey and his NP Jennifer came in and opened your wound to drain it. They said they didn't see as much puss as you would have thought with as swollen and red as your incision was. You are on two antibiotics. Vanco and another one I can't remember.

When we got in here Tuesday night they held your Lasix and Inderol to make sure you weren't dehydrated or otherwise having a bad reaction to it. They also got a PICC line in your left arm but unfortunately it's not allowing us to draw blood from it so you still have to get poked for your labs.

Strangely all your labs came back fairly good.
Your white blood cells are elevated (which can be a sign of infection) but are actually lower than when we got discharged Monday. (makes no sense at all)
Your BUN and other labs that would normally show dehydration are normal. (this is the hardest for me to understand).

So all Thursday you were showing improvement. Long periods of being awake and even playing
so they restarted your lasix and inderol.

Thursday night all to Friday morning you were miserable. Back to the lethargic, constantly crying baby desperately sucking on a wet rag.

So Friday morning I wouldn't let them give you your dose of lasix till I got to speak to the Dr's. I was only expecting to talk to Jennifer, Dr Bailey's NP, but both she and Dr Baily came in.

I explained to them that I was 100% convinced, despite what the labs said, that the lasix was dehydrating you too much and making your miserable and that I didn't want you to get it anymore.

Dr Bailey explained to me that because the left side of your heart had gotten enlarged with the stenosis you needed it to compensate for your left side of the heart not working as well.

I explained how I understood how a diuretic was necessary but wanted to at least try something different. I told them I didn't listen to my instinct before and the result was you re-admitted to the hospital with a bad infection and I wasn't going to do that again.

I have to say I really felt that Dr Bailey listened to me. He didn't seem sceptical or dismissive but really took into account what I was seeing and was willing to try a different medicine to at least see if it was the lasix.

His NP Jennifer looked a little more doubtful but when I pulled the "I didn't trust my instinct" card I won her over.

So you didn't get a diuretic for all of Friday, and all though you weren't 100% better you did look show a lot of improvement. Your nurse Mark even admitted you looked tons better without the diuretic.

You love playing with my phone. Mostly you just want to eat it.

You look surly but you were actually happy and playing a bit.

I tried to get a pic of your wound but this is the best I could do as I was holding our hand and only had a second since we were in the middle of a dressing change.

Yay! We got a pic of your nurse Corey. We love her!

On Thursday your aunt T came to visit. You were in love with her t-shirt for some reason. You kept pulling and pulling on it trying to get it in your mouth. You would grunt to let us know how hard you were working and how unhappy you were that you didn't get to chew on it. Aunt T was joking and saying she was going to get you a yellow T-shirt for you to chew on for your birthday.

The highlight of our day on Friday was that brother got to come and visit you. He even brought you a card that he drew.

In all honestly he walked up to your crib, saw you, said "oh it's brother. Hi brother!" and then he was ready to go.

But at least he got to see you. It was one of your bad spells so you weren't much interested in seeing him. Just an hour later you were wide awake and playing.

Auntie Jenn W. came to visit you. She helped bath you and helped with the dressing change. I was so tired I forgot to get a pic of her. :(

We were able to borrow this toy from the play center. You love looking at the lights and even kicked the toys with your feet every once in a while.

So it's around 7 on Saturday morning. Your dad stayed with you all night and I just got in to relieve him and send him home for some sleep before he has to go to work today.

I just want you to know that your dad was by your bedside from 7:30 pm to 6:30. He's going to go home and get a couple of hours of sleep then he's going to go to work today. He will get home about 2 am and relieve me at the hospital for a few hours before he can go home and get a few hours of sleep.

All the nurse comment about how hands on your Dad is. He's always right there at your side the second you need him changing diapers, comforting you, anything you need. What a lucky children you and your brother are to have such a loving, devoted dad like he is.

So your Granny will be here soon. She's going to spend the day with you so your dad and I can get some much needed downtime.

Dr Bailey has been saying we can go home on Sunday so fingers crossed we will be home soon.

I think it's interesting that we were in the hospital for only three days for open heart surgery but will be in the hospital for 5 days for the infection.

We're back in Loma Linda hospital

2011-08-31T22:05:00.000-07:00

You've been miserable and so lethargic. I kept telling myself that maybe you just needed more time to get better after all you did just have major surgery. You were either asleep, or crying, or crying while asleep, and your mouth was constantly dry and flaky.

I didn't want to be one of those mothers that freak over nothing but I just felt like something wasn't right.

I told Dad this morning that I missed you. I felt like I haven't seen you since Friday morning.

I had read how the medicine your were on for your heart, Inderol, could make you sleepy and I knew the diuretic your are on could dehydrate you so I made an appointment to see Dr Kwasman, your pediatrician.

After thinking about it I realized that Dr. Kwasman wouldn't be able to change any of your medication without speaking to Dr Bailey so figured I might as well try and get you to see him instead.

I called the heart center and described your symptoms and they asked us to bring you in as soon as possible.

Another call to Aunt JJ to rescue us and watch Pierce and Dad and I were off to Loma Linda.

At the heart center they were reviewing all you symptoms and trying to think of what could be responsible for you feeling so bad. I opened you shirt to show them how you were breathing and when they got one look at your incision and next thing you know you were getting admitted.

I had seen a little bit of redness around your incision site and was planning on showing it to Dr Kwasman but I honestly don't know how it got so bad.

It took 7 tries to get your IV started. The truth is you were feeling so bad you hardly noticed. The plan is for you to get a PICC line since you will be on antibiotics for a while. When they took your temperature it was 101.3.

After being on the IV for only and hour you were already feeling so much better. You were awake and looking around and started sucking on your wash cloth again. They also held your Lasix and I think that had a lot to do with you feeling better.

For a while you were even playing with the red light from the pulse Ox on your toe. It brought tears to my eyes. It's the first time I have seen even a glimpse of you since Friday before your surgery.

The Dr said they will have to open up your incision and drain it. Boy I am not looking forward to that.

You are for now fast asleep. The first restful sleep you've had in a while

I'm at your bedside till 2 when your Dad will take over and stay so I can get a few hours of sleep and be back at your bedside before the Dr's start coming in tomorrow.

I'm so glad I finally listened to my instinct and brought you in. I'm just mad at myself that I didn't do something sooner.

The Dr said we will be here for at least 48 hrs. As much as I don't want to be back here I'm just looking forward to you finally starting to feel better.

I hate Apria!

2011-08-30T17:43:00.000-07:00

Yep that's the title of my post and I mean it. I really hate them (they are a medical supply company if your not a member of a medical needs family).

But more on that later.

First to get caught up on yesterday.

Dad got your walking papers before I even got there and with a couple of test, and some paperwork we were out of there and home by 11:30.

Your nurse Nichole whom we loved (and Cory too but she wasn't there for our picture)

One last EKG

Your scar. Right where the old one was.

Freedom!!

Well the full night of good sleep we were all hoping for so didn't happen. We went to be early but your pulse ox machine kept going off keep me awake. You were also very congested and coughing. I tried everything I could think of to try and help you breath better but what you really needed was some deep suctioning. I didn't have any catheters since you have never needed such deep suctioning before so we just had to make do.

It wasn't till around 4 am when I got your cough under control and finally a couple hours of sleep before we started again in the morning.

You seemed to be doing better but around 11 am you started needing deep suction again so I called Apria, the company that supplies your respiratory needs, to get some of the suction catheters.

To make a really long story short, four and a half hours, 8 phone calls, at least 15 transfers later (where I had to repeat your name, our address, your birth date, and insurance information EVERY TIME they transferred me only to transfer me again), and finally me crying and yelling, Aunt JJ went to the supply center and was able to get the catheters we needed.

One deep suction later and you were so much more comfortable. You let out a deep sigh and fell right to a deep restful sleep for the first time today.

So now I hate Apria for making you suffer all day for something that shouldn't have taken more than an hour to get.

I want it in my obituary.

Amy Lozano mother to Pierce and Mason, wife to George, drank too much Diet Coke, hated Apria.

We have the suction all set up and are hoping that now that we can suction you as needed we can all get some much needed sleep.

Once again I owe a big thank you to my sister Jennifer who was here all day and more help than any one person should have to be.

I know I couldn't!

Also a really big THANK YOU to sweet Erin our neighbor who brought us dinner again. Not only is everything she brought supper yummy and perfect for a picky person like me but it really was the perfect day bone tired day to not have to think about dinner.

So thanks again Erin, can't wait to return the favor when baby Wood comes!!

and for my fellow Pinterest addicts.

Look what George did for me in his twenty minuets of free time he had today. We still need to put on the labels and fill the extra holes but how awesome is this?

Home

2011-08-29T19:23:00.000-07:00

and settling in.

Nobody and nothing between us and life is good.

Your just about miserable. Every time you cough your poor face screws up and you start crying your so uncomfortable. Your incision looks wonderful but the bruises are dark and angry looking. It's gotta hurt like crazy.

According to the Dr's Tylenol is more than enough to control your pain. What a bunch of B.S.

Dad and I are pretty busy just trying to keep you comfortable and we are hoping for a good night.

The camera is out in the car and honestly I'm too tired to go out and get it so I will post pics later.

we're going to Disneyland!!!!

2011-08-29T10:25:00.000-07:00

We got our walking papers and should be out the door in an hour or so!!

We will update asap!

Thanks again for all the love and support!!

Everyone is well, everyone is tired

2011-08-28T23:30:00.000-07:00

We've had a long mostly uneventful day.

You know how you wake up the first day after surgery and think...this isn't so bad! And then you wake up the second day and think....oh my I feel like crud!

Yeah, that's what you feel like today. Your not bad, just not feeling great. You have a lot of secretions and need to be deep suctions once every few hours.

Your down to 3/4 liter of oxygen and doing good but your oxygen level will fall if we try and turn it off. You'll get there in a day or two I'm sure.

Your up to full feeds and have had many big poops so your feeling a lot better that way.

So we found out last night that Dad could sleep by your bedside so we thought perfect! Dad will sleep with you and I will sleep at home. Then I will come in the morning (well rested) and Dad will go home and sleep.

Well the chair, though fairly nice, wasn't really made for a tall person like Dad and I was a little freaked sleeping in the house by myself so neither of us got any sleep.

I came at 5:30 and took over for Dad. Then he came back at 2:30 and I went home and slept. We both had dinner together and now I'm at your bedside settled in for the night.

If you stay asleep I will leave around 12 a.m. and Dad and I will get some sleep but if your restless then Dad will come at 12 and stay till morning.

The best part of our day was we got to meet a fellow local CHARGE'r Abraham in the next room to us. It was like meeting a cousin we didn't even know we had!! The live just a town away from us too. I'm so excited to have met them. I can't wait till both boys are well and we can get to know Abraham outside the hospital.

I was really hoping that we could get discharged home today but once I saw you I knew we needed to stay at least one more day.

It's looking like 90% positive we will get to go home tomorrow and it's a good thing!!

Look what your brother's up too!!

p.s. the night nurse last night told Dad that he had heard his wife (me) was tenacious. I really have no idea how I keep getting this reputation? hehe

Update: Your sleeping. I mean REALLY sleeping. You didn't wake up when I turned you, suctioned you, held you, nothing. Your out.

It doesn't make sense for Dad and I to sit exhausted by your bedside only to watch you sleep so after making your nurse promise to call me if you wake I've gone home to get some sleep.

Dad will be back by your side at 5:30 am to be there when you wake.

As I was leaving the unit I walked by a room with tons of alarms going off, medical staff hurrying here and there, and crying family members and my heart just sank.

I'm so very grateful for your health but I just can't wrap my mind around all this loss.

Ruxson, Adam, Justice, Andrew, Tyler and so many more. It's all too much.

I made it too the parking lot before I lost it and ended up crying all the way home.

I sent out a prayer to that little angel and his or her family.

Update from Dad

2011-08-27T23:30:00.000-07:00

I took over for your mom at 6:30 tonight. On my shift we have made progress.

First we moved to a new room number seven. We have a recliner now!!!! Daddy can spend the night and as of 10 PM you are on 2 litters of oxygen through a nasal cannula. We removed an A-line from your groin. Two more checks on your list to go home.

At midnight we will start your feeding and by 3 AM we will hopefully pull your drainage tube. maybe home by Monday!!!!!

We also watched football on tv. Arizona should of won that game. You agreed with me. for now you are chewing whatever you can reach but hopefully you will sleep soon.

Your Mom was in form today. Not only are we now staying by your bed side but I was brought a chair. Right now i have a pillow and blanket just waiting for you to be feed before i go to sleep.

-Dad

All is quite and going well

2011-08-27T17:24:00.000-07:00

I've spent the afternoon with you. You've been sleeping on and off and catching up on your sleep. When your awake you've been crying and unhappy. Right now your obsessed with sucking on a damp rag. At first I just assumed that maybe your throat was sore from the tubes but I finally realized your hungry. Starving actually. It never occurred to me because you've been tube fed continuously pretty much since birth and have never known was it is to be hungry.

They started you on a small amount of Pedialyte. As long as you tolerate it well they will increase it up every hour and should have you back on your formula by tonight.

We've been weaning you off the oxygen. You now only on 4 liters and should go down to 2 liters in just a little bit. I'm not sure if you will be able to go back to room air tonight but we should get you pretty close.

Your blood pressure is still high even on medications so it doesn't look like we will be able to go home tomorrow. Maybe either late tomorrow night or Monday morning (most likely) either way your are doing and looking so well your Dad and I just don't know what to do with ourselves.

Cousin Lauren and cousin Whitney came for a visit. You were happy to see them but mostly you just wanted to suck on your towel.

We are so close to home baby. It almost seems too good to be true.

I want to say thank you so much to everyone for all the support, prayers, comments, and good wishes. George and I can't help but feel like you've been a big part of Mason doing so well and getting us so much closer to home.

We appreciate each and everyone of you so much. I know I've said it before but it feels so much better to know we aren't alone.

Go Team Mason!!

Oh happy day!!!

2011-08-27T09:26:00.000-07:00

We extubated and doing great!!

Such a different experience from all of our extubations before. Right now he's on high flow and doing great. They will titrate down the oxygen every two hours and who knows we might even be back on room air by tonight.

Dad and I are taking turns at your bedside trying to keep you from pulling on your tubes so they don't have to use restraints on you. Right now your really enjoying chewing on a damp towel.

FYI - they tried to get me to leave when they extubated him. I refused. I said to them that I was there for every intubation and extubation so far and the reason why I was able to give them so much information about his history is BECAUSE I was there at the bedside for all of it. I argued that all the latest research said that making the family part of the health care process was beneficial to the patient and that their policies were antiquated and unreasonable.

The Dr then said she agreed with everything I was saying and that they were trying to get the policies changed.

I said great you can start with me.

So I stayed.

Daddy is taking the first watch. He has strict instructions not to leave your bedside if they try and make him.

I'm going to get some rest and be back this afternoon.

p.s. Dad just sent me a text that they got him a chair. :)

Not going to get extubated tonight...

2011-08-26T22:36:00.000-07:00

So we waited all afternoon for the ENT to come and extubate Mason. Finally around 9 pm the ENT fellow called and said they didn't need to be there to extubate him.

They just said if he needed to be re-intubated to do it with a 2.5 ET tube and to have anesthesia do it and then they would do a bronchoscopy on Monday.

So the unit hears this and figures they don't want to deal with a kid going bad in the middle of the night so they would just wait till morning to extubate him.

Perfect ((insert sarcasm here))

So I insisted if they weren't going to extubate him they needed to sedate him. The resident tried to argue that morphine was enough but just then Mason started waking up, holding his breath, and turning blue.

So I got the sedation.

I stayed till Mason was good and snowed on drugs. George and I are back home. Going to go to sleep early and get back early in the morning before anything happens.

p.s. I was in the room for two hours. Nobody even tried to get me to leave. I'm thinking my nurse may have been warned. :)

Another one down

2011-08-26T18:29:00.000-07:00

Mason,

It was a late night and a really early morning. We loaded you and Moms Diet Coke and we were off. A little scared and a little sad. After all you are not even a year old and already your second heart surgery.

You were kicking and smiling at 6 AM like only a little boy can, the nurses were trying to get your attention and you were just paying hard to get. I was looking at you in that big bed and remembering our CHLA day's.

I could not help but to think of how big you are how stubborned you have gotten, or you have always been, after all you made it through 2 months that would have brought most grown men to tears.

Stubborn comes in real handy when you are recovering from an operation. A part of me remembers this and thinks you will be just fine. Another still thinks that you are so small and fragile how could you possibly handle all this? But then I remember that you are stubborned and determined to do things your way.

Like when you deiced that you want some attention, you do not make a lot of noise but you will squirm kick and turn until someone comes over. Sorry i am rambling.

Your were taken into surgery and your Mon and I went to wait at the cafeteria. Hospital food, you will love it.....

So we waited and remembered where we have been and where we are now. We were finally paged and a good thing after having my third bag of Flaming Hot Cheetos I may need a future medical procedure. You are gong to love these things, Pierce does.

So the nurse at the check in station asked who we were here for and we said "Lozano" the nurse jumped right up and took us to a small room that was marked patient conference. I looked at your Mom and asked is this the type of room they bring you to tell you there was a problem? Then Mom and I spent the next 20 minutes thinking of what if's. Turns out they put us there because they wheeled you right by that room to get to your bed.

Daddy feels dumb. Everything is OK. When I first saw you with the tubes and wires my heart sank a little bit but when you opened your eyes and looked at me like you wanted to grab my glasses and suck on them. I then knew you were going to be OK.

Night is falling and we are waiting for word that we are going to take the tube out of your throat. Your Mom and I are waiting for the ENT so we can see if you breath on your own.

We do have a deal if you breath on the first try and you get a fabulous tree house that connects to the pirate ship, if that does not work for you, on the second and you get a slight smaller tree house with a zip line to the pirate ship. Third time and you get the tree house and I only give you and Pierce two soup cans and a rope. I think the first is the best choice.

You know your Mom will make me build all three. So take your time and recover. You, Pierce, Mom and I have a lot of building to do, so let go home. I love you Mason.

-Dad

It's Jelly time!

2011-08-26T15:08:00.001-07:00

We finally got to go in an see him around 2 pm. We could see everyone running back and forth working on things for him. You had to know Mason wasn't going to take it easy on them.

His blood pressure is a little high but they are treating him with meds and expect him to respon to them soon.

His main issue is his airway as always. They want to extubate him asap but they want his ENT Dr there when they do it and nobody knows when the Dr will get there.

He's really fighting the tube and so far the pain meds aren't enough to keep him comfortable. They are walking a fine line between giving him enough pain meds to make him pain free and not giving too much to so he's too sleepy to get off the breathing machine. As hard as it is to see him suffer
in the long run it will be so much better to get him off sooner rather than later.

I've told them I don't want them to make any decisions about extubating him without me there and they have agreed to have us at the beside to speak with the Dr before anything is changed.

When we got to the room the nurse, who is very nice, gave us the 5 minuet only visit speech. I told her that was not OK with us. She tried to tell me that she might be able to let us stay longer once he extubated and I asked to explain to me how I was interfering with the machines in any way.

She didn't have any answer except that it was their policy. I told her I thought the policy was ridiculous.

We stayed an hour.

Then they got an admit and then we gladly stepped out.

While we were there I answered 20 or so different questions about Mason's anatomy, history, reactions, etc. All which the nurse admitted they needed to know and made their job of taking care of Mason so much easier and a positive outcome so much more likely.

But they don't want me at his bedside. Make any sense to you?

Me either.

George and I have discussed it and while we are going to try and keep an open mind and see how it goes if the visiting policy stays as restrictive as they say they are going to make it we will not be bringing Mason back here for anything other than minor treatment.

Why would I want to bring my child to a place that wants to keep me away from my child.

Why would anyone?

It's so hard to see him in pain and not be with him, but to be near him, to know that we are so much closer to getting him home and to a normal life span.

What else really matters?

He's in recovery!!!

2011-08-26T12:54:00.000-07:00

He's in recovery now! We got to see him for a second as the wheeled him by.

He's still intubated. The nurse told us that the surgery went really well but he has some airway issues. We don't know if they found something new or if it's still the larynogmalicia. We are waiting on the Dr's to come and tell us how everything went.

They put us in a little conference room to wait for him to come by. It totally reminded me of the little room we put our families in when we had bad news to tell them. At QVC we called it the crying room. I almost passed out and threw up waiting to see him. I know know the feeling of having your heart in your throat.

I had a PB&J for lunch. I thought it was fitting (that and I guess seventh day don't eat meat so I didn't have much else to choose from)

....OK just spoke to the Dr's heart went like gang busters not much to worry about there. His airway is even more narrow then they thought. The Dr's are in conference now to see what the plan for his airway will be.

Surgery update..

2011-08-26T10:33:00.001-07:00

proceeding as expected. He's on bypass.

FYI - Loma Linda gives out these pagers that they update at least every two hours so you can know how your child is doing. Gotta give LL an A+ for this one.

He's in surgery

2011-08-26T09:16:00.000-07:00

If you can't read it says..surgery started at 8:49 all lines are in and doing well.

Now it's hurry up and wait.

Surgery day part 1

2011-08-26T07:50:00.000-07:00

So were all checked in and they have taken you back. Dad and I are in the cafeteria with our hospital pager and should get an update in an hour or so that they are starting surgery.

I feel like my soul is outside my body floating somewhere in this hospital, maybe near you, and that I wont be complete again till we are back together.

Since August 2010 when you were first diagnosed with the CHD at 28 weeks into the pregnancy it's just been a series of hard blows. With each one I keep thinking..this is the hardest thing I have ever had to do/go through and then then next thing happens and I think...no THIS is the hardest thing ever.

Today as we kissed you goodbye and handed you over to the surgery team was the hardest of all the hard moments yet. On the outside I may have looked calm, though I did start crying a little bit, on the inside I felt like screaming NO.

Seconds have never felt so heavy.

Aren't you adorable!

They tell us the surgery may take as long as 6 hrs. I will update the blog as they update me.

Send your prayers out on swift wings so the can fly and be with my baby when we cannot.

The bitter and the sweet

2011-08-24T20:27:00.000-07:00

Just a quick post. I'm beyond exhausted and want to spend the day with Pierce tomorrow before he goes to stay at my sister's while Mason is in the hospital.

Our pre-op day started at 9:15 and didn't end till around 3:30.

First a stop at financial, then a long wait, then a visit with the nurse, another long wait, the nurse practitioner, then wait, a meeting with the surgery nurse coordinator, the a tour of the ICU, an X-ray, and finally we got to go home.

They thought the might have seen a little atelectasis (collapsed air pockets in the lung) but your X-ray ended up being normal.

The sweet.

Your the first case of the day so we will get there at 6:00 am and then your surgery very soon after.

Other children, who don't have problems other than the heart defect, have gone home as soon as 24 hrs after surgery! With your respiratory issues, if everything goes really well and they are able to extubate you right away they are thinking letting you go home as soon as Monday.

Don't you look excited

Stop taking pictures mom!

Of course if you don't do well and can't get extubated... well then we are in for a much longer stay.

Your bigger, and stronger, and have had months to recover from your throat surgery and so we are hoping for the best.
The bitter...

As I was going over the hospitals routine and policies with the surgery nurse coordinator she informed me that our visitation time with you, at least for the first day or so, would be very limited. That they would let us see you for only a few minuets at a time and then we would have to leave and come back after a time period.

Yeah, um I don't think so. Not gonna happen. Not in this life time. Not ever.

I told her to go ahead and open your chart and write down that I was going to have a problem with that, and that while I understand having to step out for procedures, shift change, reports, and for other families privacy, but otherwise I would not be separated from my son.

Period.

She went on to explain that since you are having open heart surgery that your treatment would be very complicated. I reminded her that you have already had open heart surgery, and a much more complicated surgery than this one, and not only did CHLA welcome us at your bedside, but encouraged us to be there.

She then went on to say that they would be doing your recovery at the bedside and that would take hours. I told her they did your recovery at the bedside in CHLA and we were able to be at your bedside about an hour and a half after your surgery. And again, that surgery was much more complicated than this one.

She then went on to say well maybe they would only limit our visit while you were on the breathing machine. I explained to her that I have worked with vent's for over 10 years and a families presence at the beside has never prevented the machine from properly ventilating a patient and that wasn't a valid reason to keep us from being with you.

She then asked me what kinda of a nurse I was. I told her critical care, and as a matter of fact, I often recover open heart surgery patients (though adults not children). I also told her in my 10 years I have never kept my families away from there loved ones.

EVER!

She then told me that she was sure the nurses would work with me to come up with a situation that we were both happy with.

I told her I would be at your bedside at all times except for shift change, shift report, procedures, and for other familes privacy.

I think she may have sighed very deeply. I almost feel sorry for her. Almost.

I did get to meet some of the nurses that would be taking care of you. They all seemed nice and mellow. I also saw several parents at the bedside so I'm not going to let myself get worked up over something that will probably not even be a problem.

But just let them try and and keep me from you

this momma is gonna roar!

Yeah, you think it's a bunch of B.S. too.

A letter to Mason

2011-08-23T23:20:00.000-07:00

Dear Mason,

In December I started this blog with a letter filled with my fears and hopes for you. So much was unknown then. So many unanswered questions. I was ready to get going and face our future and just know. But at the same time I just wanted to stay where we were with you tucked safe inside me.

So much has happened since then.

So much has changed.

You have gone through so much.

We have gone through so much.

We've learned, and experienced, and grown, and fought, and won, and we have become a family.

On the 26th we will be bringing you to Loma Linda hospital for open heart surgery to give you a chance at life.

Part of me is ready to just get going and get the unknown over with the rest me wants to take you a run as far away as I can and keep you safe tucked up against me.

It feels like we are right back where we started last December.

Like our own version of "Groundhog Day" only without Bill Murry or quite so many punch lines (and a whole lot more Dr appointments!). But, we hope, with our own happy ending.

Even though it seems terrible to even write this it's so much worse now then it was back in then.

Then you where an idea, a few quick movements, fuzzy black and white image on 100's of ultra sounds, with a name and a beating heart but you weren't you. Not yet.

But now

You are you.

With your big deep dark chocolate brown eyes that already seem wise beyond your months. That crooked smile that radiates joy and makes all who come anywhere near it unable to resist falling in love with you. Your will. Your stubbornness (just like your Mama!). The way you already look at your brother like he's a superhero and the way your whole body dances with glee at the simplest of things.

And you, globally developmentally delayed you, in a room full of people all bustling around, poking at you, testing you, a mass of confusion and movement.

You look around taking each person in turn, till you come to me. Then you stop. Although you do not reach, you can not speak, you can not hear, and we are not even sure how well you can see. You stop, and the look on your face changes, and everyone sees that you recognized me. That you know I'm your Mama.

Of all the people there I'm the one you focus on and everyone in the room gives out an soft uncontrollable "awwwwww" and look back and forth between us and the love they see there.

It's so much worse now. The thought of losing you.

I have constant heartburn just thinking about it.

Not the kinda heartburn that you can treat with Tums. Not the kind that travels up your esophagus with spicy foods.

No this kind of heartburn is this constant ache and pressure on the heart. It fluctuates as thoughts pass. Sometimes the pain so intense it about bends you over and your heart literally burns, sometimes just a constant low heat.

I tried to explain the pain to your Dad once but it turns out I didn't have to. He already knew.

He's been feeling the same pain for a while now.

The other night I had just given you a bath and you were laying there all shiny and sweet. You were giggling in your breathless way as I blew raspberries on your belly and I as I looked at you I thought simply I can not do without you.

and I can't Mason.

In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life.

And once again your Dad and I will have one thought

One wish

One prayer

One hope

Just two words

Come home

That's it baby. That's all I ask.

Please just come home.

We can not do without you.

I can not do without you.

Tomorrow we will go to Loma Linda for your pre-op appointments. I think we will find out what time your surgery will be. I will update the blog tomorrow with any information I find out.

Till then my very talented, and lovely, friend Becki from Becki Cloud photography moved heaven and earth to do a family photo session for us the other week. I couldn't love them more, or be more grateful to her for the gift of these photos.

Getting to the heart of the matter

2011-07-26T14:07:00.000-07:00

Cardio thoracic surgeon's appointment yesterday. Wait 1 1/2 hours (2 if you count waiting to see the surgery scheduler)

Mason's surgeon will be Dr L. Bailey. World renown and highly recommended. He seemed very approachable and had a calming manner about him (is it ageism that the fact that he's two years younger than my mother makes me pause a bit?).

Most of the echo results are normal. The repair of the interrupted aorta and the closure of the VSD were successful. The patch they place to close the VSD has not bulged. Instead it seems that part of the septum is malaligned. This is not a failure of the previous surgery rather another issue with Mason's anatomy.

The exact findings on the echo are:

Severe infundibular/conoseptal malalignment, with subaortic obstruction. Mild left ventricular hypertropy.

What the heck does that mean?

Well in short the infundibular/conoseptal part (the red arrow) is bulging out and causing the subaortic obstruction ,or narrowing of the aorta, (the yellow arrow). With the aorta being so narrow it's causing the blood to back up and the pressure from this back up is causing the left ventricle to enlarge (green arrow).

Left untreated this will eventually cause the heart to fail but with surgery they plan on dissecting the aorta and removing the extra tissue that is bulging out.

Dr Bailey tells us this is a very successful surgery and he sees no reason for it to fail or cause any major complications. He is afraid however, with Masons Laryngomalacia(redundant tissue around his vocal cords) and respiratory difficulties because of this might cause another extended hospital stay. He also already brought up the possibility of Mason needing a trach.

The kicker......

we face the very real possibility of this re-occurring and Mason needing the same surgery again in the future. We will just have to have an echo done every 6 months and hope that it doesn't.

I know. Talk about gut check. I felt like I was going to throw up right there on that world famous heart Dr.

So surgery day is set for August 26th. We have a month to prepare for the unprepareable

Our heart is on the line again. There is nothing more I can say.

There is nothing more to say I guess.

Mason's first haircut. Sorry for the lousy pictures but I was by myself so I was shooting with the point and shoot camera one handed!

This boy's hair grows fast. It was over his ears and getting down to his eyes! See how well he is sitting? He's getting better and better everyday (even if it's only for short amounts of time)

Yeah so it was going ~~really well~~ terrible. So I had to improvise.

and I did the rest of the haircut with Mason in the bouncy seat (yes do I rule!)

and Ta Da! Not too bad if I do say so myself.

Surgeon appointment update

2011-07-20T14:59:00.000-07:00

So after two hours of phone calls yesterday I was able to get us an appointment with the cardio thoracic surgeon on Monday the 25th. The conversation went something like this...

Me: I need to make an appointment for my son to see the surgeon..
Person: The next available apt we have is for August blah blah blah
Me: We the cardiologist feels Mason needed to see the Dr asap because of his echo results
Person: ((sigh)) OK let me put you on hold and go look at the echo results
Me: wait......
Person: Oh OK well we need to get you in sooner than that. Hold on and let me get you the supervisor.
Me: wait...
Supervisor: Well the next available apt we have August blah blah blah
Me: no see echo
Supervisor: hold on while I look at echo
Me: wait....
supervisor: OK we are going to need to get you a sooner appointment hold on while I get the nurse
Me: wait....
Nurse: blah blah August
Me: echo
Nurse: hold on
Me: wait....
Nurse: OK I need to talk to the Dr
Me: wait....

So finally after going through 4 people I was able to get them to make a time for us Monday morning. In fact they just created an appointment for us. I'm so thankful that they are bending over backwards to get Mason seen but my stomach is in knots knowing that Mason's echo results were bad enough for us to get this kind of attention.

The good news is that's George's day off so he is going to be able to be at the appointment without using up any of his vacation days which we need to save up for surgery.

So Monday we will have a better idea of what is wrong and when surgery will be. Till then we wait and try not to go crazy.

Since post with pictures are so much more interesting...

Mason "enjoying" a little sun out in our backyard

and Pierce, because he's just so dang cute and an amazing big brother

and in other interesting news this morning Mason was just crying and crying and seemed to be in pain. Usually when that happens it's because he's having gas pains but no matter what I did to help him he just kept crying. Finally as I went to check his diaper (for the 3rd time) I noticed his Mic-key button was hanging half out of his stomach.

Holy shiitake mushrooms!

Now if your not the parent of a G-tube feed baby then let me explain to you that the G-tube(feeding tube...see black arrow in picture above) is held in by a small balloon filled with saline. At anytime this balloon can get a leak, deflate, or worst of all just be pulled out. They warn you when you get the G-tube that this is not a someday might happen thing. It's a someday it WILL happen thing (as I'm sure all my tubie families are all too aware) and when it does you have about an hour to get to the hospital before the stoma closes up and you have a BIG problem!

So they supply you with a spare so WHEN (not if) the tube comes out you can bring it with you when you go to the nearest ER or GI Dr to get it re-inserted.

Now I watched them when they changed Mason's tube last month (which took 7 minuets and cost us $150.00 but cost the insurance company a ton more than that) and I realized it's not a big deal. Not that unlike putting in a Foley (urinary catheter) which I have done 100's of times as a nurse .

So I took a deep breath, deflated the balloon, pulled the old one out. Checked the new one to make sure it worked and popped it right in. Took me a total of 3 minuets tops and it saved us a trip to the Dr's and at least a $150 bucks!

Mason was unfazed he just sighed and rolled over an went to sleep.

but I was pretty impressed with myself.

I am such a badass!

and since I'm usally the one behind the camera here's a picture of the boys and I on Mother's Day.

Yesterday...

2011-07-16T17:30:00.000-07:00

Yesterday all my troubles seemed so far away.
Now it looks as though there here to stay...
There a shadow hanging over me
yesterday came suddenly.

Thursday as I was updating the blog and writing the part about having to make medical calls everyday I remembered I needed to call the cardiologist and follow up on the echo we had done to get clearance for Mason to get his cleft palette surgery done.

Well it turns the echo showed that the patch they placed to close the large hole between the bottom two chambers of his heart is bulging and causing the blood to back up. This in turn is causing increasing pressures which will cause his heart to enlarge and eventually to fail.

He is going to need open heart surgery again sometime in the next few weeks.

His heart.

The heart that was 99% fixed is now failing and we are back where we were 6 months ago facing another critical surgery and back to that great big scary place where you don't know if your child will live.

I feel like I took a step out of the door and got run over by a Mac truck.

I feel betrayed, though there is no one to blame.

Just when we started to feel like we could exhale and feel safe we are right back to January 6th and our beautiful baby boy who today looks like this..

Will look like this again..

I cannot bear the thought of it. His chest being opened up, his heart stopped, not again.

I'm terrified. I feel like there's a two ton anvil sitting on my chest and I can't take a deep enough breath to fill my lungs.

Someone asked me if there was anything they could do to help.

There is.

Pray, if your beliefs lead you that way.

Send a little hope this way if you have any to spare because I'm feeling a little low at the moment.

and believe for us. Believe that he's going to be just fine.

Because we don't work without him

Yesterday came suddenly indeed.

We are waiting on a referral to see the cardiac surgeon and then we will know better when the surgery will be. I will let everyone know as soon as we do.

Dear Heather

2011-07-14T22:19:00.000-07:00

Dear Ellen, Dear David, Dear Mom, Dear everyone who has been asking me so long for an update.

This is for you..... and for Mason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We have been home twice as long as we were in the hospital.

Impossible. I can't bend my mind around it.

The two months at the hospital felt like forever. Like we were trapped in a dream within a dream and lived an entire life only to wake up to realize that in reality only a short time had passed (If you haven't see Inception then this reference wont mean much to you).

These last four months have flown by. So much has happened. So much has changed and somehow our new normal has become....well normal. The Dr's appointments, the referrals letters, the care book, the constant battles, are just part of our to do in a day just like grocery shopping, or getting the mail.

Your first Easter Basket. I accidentally bought you a preemie outfit (because it coordinated with the outfit I bought for Pierce) we almost had to grease you to get you in it.

I'm sorry for the long delay in posting. It has been mostly due to time management issues....as in I can't manage to get done everything I need to do in the time I have to do it. If you could see all the started and unfinished drafts for the blog you would laugh (or is it cry) along with me.

Everyday I SWEAR that I will finish my post and update the blog. I put it on my long list of must-do-today-no-matter-what list but it always falls after.

Best Easter Bunny Ever!

After the two to three medically related phone calls I have to make (which always take forever)

After the Dr's appointments of which we have at least two or more a week.

You can tell your loving this!

After I spend time trying to take care of your medical needs, and making sure Pierce isn't feeling left out (but I struggle with this a lot).

After the laundry, the dishes, the groceries...always after

Love that Smile!

Then night comes, impossibly fast, and I have to decide. Blog or sleep.

Guess which one wins?

It took a while but your brother actually enjoys you now
and will even hold you (for a tiny bit) for pictures.

I actually am going to try and catch up the blog for the last few months in future post so for now just a quick letter.

Dear Mason,
My beautiful boy. Just a few days ago you turned six months old. Half of a year.

Just 7 months ago I cried myself to sleep most nights with only the one thought.

Live

Whatever it takes. Please just live.

and here you are. SIX months old and thriving with more personality than any one kid needs. You amaze me.

There are so many things you love. Pulling on my hair. Watching your brother jump around and spaz out. You love to watch everyone and everything around you and are always so aware of whats going on around you.

You put everything you can get your hands on in your mouth (and get quite upset when you can't get whatever you want into your mouth).

Father's day. Daddy's shirt says property of Pierce and Mason (SO TRUE)

You've been rolling for a while now and can even get onto your tummy when you want to. You haven't quite figured out how to roll back off your tummy but it's only a matter of time. You've discovered your feet and love to roll holding onto you legs till you look like a confused Sumo wrestler.

Your getting better and better at holding your head up. We work on it every day. Some with your physical therapist Marquita (who you love and you always fart on) and tons with me and Aunt JJ.

You have started to giggle. Your Aunt JJ can get you to giggle better than anyone. It's a really soft giggle almost like a whisper and if a person didn't know you well enough to hear it they would miss it but it's one of the happiest sounds I have ever heard. I treasure it every time it happens and hope to catch it on video soon.

You love to sleep being held in someones arms especially your Daddy's. You both run so hot it's like putting two heaters together and Daddy starts sweating soon after he starts holding you but he just sweats away because he doesn't want to put you down. You just tuck your face into the crook of Daddy's arms and snooze away even though your hair ends up plastered to your head with sweat. I think if you could talk you would call it your happy place.

You have the most amazing hair and it sticks out and up and around in astounding ways. No matter how hard we try and tame it.

You fall asleep around 7 pm and wake around 6 every morning. You'll play for a while and let me sleep in a bit but once you get bored you'll cough because you know I will wake up immediately to check on you (you little stinker). I will sit up and look over the side of your bassinet and you greet me with the biggest crooked smile I have ever seen and I love it every time (and it makes 6 am after only a few hours of sleep more bearable).

My Yankee Doodle Dandy boys

You look so much like your brother did at the same age (except he was off the charts large for a baby and your off the charts small for a baby) it takes my breath away sometimes. I look at the two of my beautiful boys and know I must have done something right to deserve all that I have been blessed with and I still almost can't believe that I am the mother of two boys.

I loved you from the moment I knew I was pregnant with you, the first time I saw you, the first time I held you, and all those long nights and terrifying days in the hospital my love for you grew and grew but oh Mason how I have come to love you. Not the idea of you but YOU.

I would never have wished CHARGE for you but now that your here I wouldn't wish it away because that would mean I wouldn't have YOU.

YOU my crooked smiling, whisper giggling, Sumo wrestling baby boy.

Happy six months baby. Looking forward to a lifetime more.

Love, Mommy
(ugh forgive the spacing on this post. I've been trying to fix it for an hour and I give up now)

Party canceled

2011-05-10T10:12:00.000-07:00

Well, it's seems a plague has hit our house (I'm guessing bronchitis) and we are all very sick. So far Mason hasn't gotten it but as of 2 am last night Pierce is starting to cough and I'm afraid he's sick now too. Unfortunately considering how sick we are, and the fact that I'm positive we are contagious, I think it will be best to cancel the party this weekend.

Please if you could let everyone on your end know that it is canceled and that we are sorry for any inconvenience this may cause you.

I've been hesitant to send this email and cancel the party but Pierce just threw up grape juice on my feet and I think that's a pretty clear sign of what we need to do.

Thanks and love to all!..

People who don't sleep...

2011-04-27T20:23:00.001-07:00

should not make invitations. :/

The party is on SUNDAY the 15th of May even though the invite says Saturday.

and the cherry on top...

Two of the fifty I sent out came back with the address ripped off. I just don't know which two of the fifty they are.

So...if you don't get an invite by Friday or Monday for sure at the latest.
Your invited...as soon as I get some sleep. Please let me know and I will send one to you asap

fingers crossed Mason has a better night tonight and I get some sleep.

Ronald McDonald walk for kids 2011

2011-04-14T11:30:00.000-07:00

Dear future Ronald McDonald House family,

Today you are living your life but someday, all too soon, you will wake up and find your life has become a nightmare.

It there will be words like diagnosis, treatment, prognosis. There will be surgeries, or maybe chemotherapy, or even transplants to come.

There will be phrases thrown out there like..."we have every reason to be hopeful", or "we will just have to wait and see" or my ~~favorite~~ "we will do all we can".

I wont lie. It's going to be bad.

No forget that. It's going to be horrendous.

The worst part is it wont be happening to you. It will be happening to your child and that is a nightmare in a way that I simply don't have the words to express.

But there is a place that will help you. They will give you a place to do laundry, to eat, to sleep, support you, and most of all they allow you to stay close to your child. While it doesn't make things better it will be more a a gift than you can possibly understand. They allow you to care for your child by caring for you and this help will be priceless.

This last Sunday we, and people who love us and support us more than we deserve, helped in a small part to make this possible. I'm thrilled to say that team Mason raised over $1500.

More than anything I wish this place wasn't necessary. That there would be no more sick children but that is not within our powers so instead....

I hope that the pain is little.

I hope that your cure comes quick.

I hope that your stay is short and that soon you will be back with your healthy child surrounded by your own four walls.

and that you, like us, will always consider the Ronald McDonald House the home of your heart.

With love the Lozanos and the most fabulous remembers of Team Mason Los Angles Ronald McDonald house Lyman place rooms #74, # 44, #69

It's good to have friends...

2011-04-11T23:20:00.000-07:00

There are so many things I need to post about but I just can't seem to find the time.

You've been sick. Nothing serious, just a cold, but this simple cold translates into me getting almost no sleep. Which translates into me being a slug just getting what I have to do done every day to get by. Oh that and 4 Dr's appointments and 1 dentist appointment (for Pierce) in 5 days has been keeping me beyond busy.

Happy to report your about 90% recovered and I believe will soon be 100% back to yourself (and me too!). I just have to tell you, even though you've been feeling just about miserable your always so sweet and easy. Your just about the mellowest babies I've ever known.

Well, except when you poop. Because when you do you will scream till you turn purple and you would think your head might start spinning around and fly off! But once your changed your back to being your sweet easy self.

But being this busy unfortunately also means I as behind on everything else I need to get done including the invitations to Mason's welcome home party.

I really wanted to do it as soon as possible but I thing I'm going to need to postpone it a bit. Just till May 15th. That, I hope, will give me the time I need to catch up.

So, if you can, will you please save the date for the 15th we would absolutely love for you to join us. I sure hope changing the date doesn't inconvenience anyone too much. Thanks for understanding.

There were two major highlights to our week. One was the RMH walk, which I will post about soon, and the other was when my dear friend Becki from Becki Cloud Photography came over to take "newborn" pictures of Mason.

I love them more than I can express. Thank you B for recording these images for me.

There is so much Mason missed out on being in the hospital for the first two months of his life.

Now newborn pictures will no longer be one of them.

Thank you I will treasure them always. I

It's really good to have friends. :)

Oh how I love this sweet face

and tiny toes!

Mason Samuel was named after my sister Lisa who's nickname was Sam.

My sister passed away in July of 2007 from Pancreatic cancer. She was only 47. But when I went to see her for the last time I brought her this bear as a gift from Pierce and she loved it. She held it in her arms even after she was in a coma. After she passed away the bear came back to me. I will always treasure it.

She died about 18 days before Pierce was born so she never got to meet either of my children. I will always regret that. But now at least her memory will be carried on in my Sam and as my mother always says...as long as someone is remembered they will live forever.

This one. This one is my absolute favorite. My boys.

What a lucky lucky woman I am.

SAVE THE DATE!!

2011-04-03T07:00:00.000-07:00

So I'm behind on getting out the invitations (so not like me as my family and friends know). So I'm cheating a little by posting a save the date here in hoping that you will already have set aside the day to join us in welcoming our Jelly home by the time you get you invitation.

p.s. we would love everyone to come and join us to welcome Mason home. More the merrier! So please if you would like to come and I don't have your address help me out by emailing me at jellychronicles@yahoo.com

No matter what

2011-04-02T12:36:00.000-07:00

You know how you promise yourself your gonna start your diet tomorrow? NO MATTER WHAT and then tomorrow comes and you don't.

Then you say OK now tomorrow I'm gonna start..and this time I really mean it NO MATTER WHAT and then you still don't..

Yeah well, that's what it's been like trying to update the blog. Every night I say tonight NO MATTER WHAT and then I look at the clock and it's 12:30 (or later) and I know I'm gonna be exhausted the next day so I don't update but I say tomorrow NO MATTER WHAT.

So here is my NO MATTER WHAT post....

I haven't updated the blog for several reasons Not much is happening really.

We're in a lull where we are waiting for Dr appointments. We have referrals but since nothings stat we wait. But the calendar is getting full. We have 9 Dr's appointments this month and it's only the 1st of the month!

You are doing so well medically. Your tolerating your feedings, and your oxygen need are decreasing. You've even gained weight! At our last appointment you weighed 8 lbs 14 oz! A whole 13 oz in less than two weeks. Yay!

We've even gotten you down to only two meds - an iron supplement and vitamins. That's it! So healthy.

No laptop = no blogging. We still have the old laptop the one I destroyed before I destroyed the latest one (see why my husband adores me) which works but only when hooked up to the old desktop which also works but it from 2004 which makes it practically an antique. Both though are in my craft room and I have almost no access to them during the day while the boys are up and about and am too tired to go in there and blog at night. But this will soon be remedied as George got me a new netbook so I can get back to blogging more regularly. (I'm really really going to try to keep from beating up on this one)

One needy 2.7 year old and a medically needy 2.5 month old leaves very little time to get on the computer even if I had one to get on. I was about 4 hours into my first day alone with the boys before I realized I wasn't going to be able to do this alone.

Now that the nurse has started it sooooo much better and I'm so grateful the insurance is paying for one. I honestly don't know how I would survive with out home nursing.

and finally...

I've been in a really dark place for the last weeks and I've been afraid I would only be able to blog dark things so I've held back.

I'm better now though.

I've tried to write about the dark place I found myself in but just keep writing and deleting. Starting different versions of the post only to save them and not publish.

So for now I'm just going to publish this post as it is. Maybe I will publish the post about my dark place later. Maybe not.

I keep reminding myself I'm in the place I always wanted to be.

I'm living the life I dreamed of.

Married to a man I adore (though I do want to beat him somdays..)

Two beautiful, loving, healthy boys ('cause at the end of the day you are incredibly healthy for someone with CHARGE syndrome)

A home like I only wished for.

and a future filled with so much possibility

I'm living my dream. In the place I always wanted to be. I'm so lucky to be here.

It's just so different than I thought it would be like.

and I'm learning how to deal with that.

I'm trying to anyway.

Pierce absolutely loves joining you in the sink for your bath. He hardly fits but somehow manages to squeeze in with you. He even helps out by washing your feet.

Best big brother ever!

Cousin Kelly and Caitlin came down to visit you (I guess I forgot to get a pic of cousin Caitlin)

Uncle Pat got to meet you and held you for over an hour even though he had to get going. Uncle pat is actually very happy even though he looks mad in the picture.

Toto I don't think we're in Kansas anymore!! One day worth of approvals and one denial letter from insurance. Your care book is in the background. The care book is so necessary. I have a section for each of your specialist, therapies, medical equipment, insurance, bills, receipts, phone long, calendar (for our many many appointments), and medicine section. You just look so cute in your bath I had to get a shot of it. Like the carefully place soap bubbles?

We were getting your machines ready for the night and turned around to see Pierce had shared his letters with you (one of his most favorite toys). We think it stands for #1 brother. I like to call this "the unit". In the back you can see the home oxygen concentrator along with the home fill unit on top of it. In the front is your feeding machine, pulse oximeter, and nebulizer machine. You can't see the suction machine which is hiding in the playpen. Every night we have to bring everything upstairs (except the oxygen concentrator) and set up for the night shift. The great thing is you go to sleep around 8 and sleep through the night till around 7. I even turn you and change your diaper and you don't really wake up. How awesome is that?

There you are hiding amongst all the stuff!and this is what happens when I try and get on the computer...

Pierce vs. the black jelly beans. Just awesome. It's a dang good thing I love him so much. I had just given him a bath and had to give him a second one after this

Thanksgiving

2011-03-22T20:50:00.000-07:00

(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

2011-03-18T21:53:00.000-07:00

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

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...

2011-03-18T13:11:00.000-07:00

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...

2011-03-14T23:55:00.000-07:00

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...

2011-03-11T07:13:00.000-08:00

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?

2011-03-10T08:26:00.000-08:00

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!!

2011-03-09T07:58:00.000-08:00

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!

The waiting game....

2011-03-07T22:18:00.000-08:00

We had a nice Saturday at home with Daddy, Pierce, and I. It just felt so close to right. The only thing missing was you and Bonnie. We were almost there but without you far from being a complete family.

Not a lot is going on. You now weigh 7.7 lbs and are 21 3/4 inches long. Now that they aren't turning off your feedings every other day your starting to grow! We hope your going to start packing on the pounds and inches now.

Your breathing is getting better and better with longer periods between your de-saturations.

We are just waiting on the sleep study. We have been in line since Thursday. We hope to have it done tomorrow but aren't promised anything.

I've been squeaking as much as possible to get this wheel oiled as soon as possible because....

once we get the test done (as long as the results are good)

we do the car seat test

we do our overnight test

and then......

we

get

to

go

HOME!!!

Dad and I can't let ourselves get too excited yet. But we are so close.

Fingers crossed that we get the sleep study done tomorrow!!

and...

2011-03-04T22:04:00.000-08:00

Our Internet isn't working so I won't be posting again till at least Monday.

I'm just leaving your room heading home to spend some time with Pierce. Granny will be here with you tomorrow.

No sleep study tonight which is good in a way. I don't want to be exhausted. Pierce deserves some quality time with me.

Your de-saturating to the 70's when you get in a deep sleep. I'm trying not to read to much into it.

Just going to keep going with the flow. See what tomorrow brings.

Stupid H word.

The H word...

2011-03-04T19:27:00.000-08:00

Yep, that word again. It's back. It's trying to sneak it's way in and take over.

I blame the Dr's and the nurses for part of it. All talking about next week. The happy little smiles. The quickened rate at which things are being ordered and carried out. The are feeding it. Encouraging it. Trying to distract me and let it sneek in.

It's partly your fault too. Your back on 2 liters through the nasal cannula for over 24 hrs now and your doing well.

Hanging out in your new swing. Sometimes you like it.

Really well.

and so it's back.

Hope

Hope for home. Hope for our family to reunite and be whole. Hope that this part of our journey is coming to an end.

Your first big boy outfit that nurse Jaclyn bought you. Look at your dinasour feet!

Us with your night primary nurse Jaclyn. She's absoultly wonderful and nurturing to you. Mommy can always sleep really well when nurse Jaclyn is on.

The Dr's want to do another nap study which is where they will montior your oxygen levels over an hour while you sleep. I'm asking for a sleep study which will be done over a whole night as you sleep.

Your even doing better during your PT sessions.

We had a nap study done before and the results suggested your oxygen levels were fine at one liter of support. Well they were for a couple of days and then it wasn't enough and you crashed and almost got re-intubated.

I just don't feel that an hour study, which means only watching you for 20 minuets on 2 liters, 20 minuets at 1 liter, etc will give us a clear picture of your oxygen needs. The Dr's think I have a good point and so they are working to get the longer study done.

In fact it's around 1:30 on Friday and Smith, the resident, just came in to tell me that they are optimistic that they may have a slot for us tonight.

We are about to hit our 28 day check out from RMH on Monday again so I deiced to check out today in hopes we will be back in and settled again on Sunday. I was going to drive home tonight to sleep at home and then pick up Pierce tomorrow so I can take him to Sarah's birthday party. Now, if the study is tonight, I will stay here and leave in the morning I guess. Good thing I can sleep while they are doing your study.

On Wednesday Aunt JJ surprised me with a visit from Pierce, Cousins Lauren, and Jonathan. It was wonderful to get to see Pierce again and he and I had so much fun singing his favorite songs and just spending some Mommy and P time.

Best big brother in the world!

The best part of the visit is Lauren and Jonathan got to hold you for the first time and of course you absolutely loved it.

Aunt T came to visit us on Thursday. You loved it.

So depending on how soon we get the sleep study done and what the results are the Dr's are talking us getting out of here soon. Like next week soon.

Me. I'm just going with the flow. Happy with how good you are doing and the way things are. Tomorrow will take care of it's self. I honestly just don't have the reserves left to let myself get excited only to deal with the crash if it doesn't happen.

No reason to be using the H word.

Not yet

but......you really are doing so good. (and I'm getting my hopes up)

Sharing some love

2011-03-01T23:24:00.001-08:00

Beautiful baby Nikolas a friend in CHARGE with Mason is having a really hard time and could sure use some love and prayers. We've been so blessed with support that I was hoping we could send some his way.

I know you might think it's just a comment on a blog and it doesn't mean all that much but let me tell you from experience every comment lets you know your not alone and that is so helpful when your in such a scary place.

You can find Nikolas's blog HERE.

Get well Nik. Tons of love from Mason and I!!

Warning mad elephant...

2011-02-28T18:43:00.000-08:00

My mom was watching TV the other day and saw this scene from Dumbo. She said it reminded her of you and I and I agree.

This is exactly how I feel.

Jailed. Locked away from my baby. Locked away from our lives.

I even think the "danger" and the "mad elephant" signs are very fitting. At least I think the Dr's, and nurses sometimes think so.

I know sometimes I feel like a "mad elephant" fighting to protect her child.

I'm tired. Tired of fighting, tired of being thought of as a bitch, or at least difficult, by the medical staff.

I'm hitting an emotional and physical wall more and more often and sometimes I just don't think I can do this another minute.

But it only last for a while. Usually till I'm with you.

It's amazing how my love for you fills me and heals me. I know I am where I am meant to be. You are far beyond worth everything this is costing.

I know your Dad and I will keep on going till we have you home and well. As long as it takes.

But I'm seriously wondering if someday, in the distant future, when we are back on even ground again if I won't go through some kind of post traumatic stress from all of this.

I might just have to take a mental break or something and deal with all these emotions I'm just pushing aside that I don't have the energy or time to deal with.

Ah well, I doubt I'll ever have the time.

I don't think I will ever be able to watch Dumbo again without having flashbacks though.

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

So anyway on to you....

Your breathing has improved a lot but I honestly can't say if it's better than before the surgery or not. We still have hope that you just need more time to heal and, with time, we might see a great improvement. But both your dad and I feel we haven't seen anything yet to make us think there has been any great change in your breathing.

Today Monday, the last day of February, your still on the vent through the nasal cannula. We are decreasing the support a little everyday and your labs have been pretty good but not great.

We are going to give it another week to see what happens. Maybe things will change. I has only been a week today since your surgery.

I just can't let my heart hope. It hurts too much to hope right now.

Since I haven't taken any pics lately. I'm posting some videos I took of you. The first two are ones I took on the longest night of our lives.

As bad as you look and sound in these the funny thing is they were taken in the early morning hours after you were starting to show improvement. I wanted to show you a bit of how you were breathing and what you went through. Notice on the second one how deep your chest is retracting as you try and breath and remember this is when you were doing a ton better.

I should have done some in the early evening when you were really struggling but I was too scared to think of pictures or video then.

This one was taken yesterday while you were awake and playing with me. While we don't know how good your vision is I now have no doubt now that you can see. Your personality is starting to come out and it's so much fun to be with you.

I'm too tired to give a blow by blow of the last few days, though someday I think I should, so I will give you the short version.

The Dr's wouldn't start your feeds. I fought them and got them to start them.

The Dr's wouldn't increase your feeds. I fought them and got them increased.

The Dr's wouldn't increase your feeds more. Yes, I fought them and well you know the rest.

The Dr's stopped your feeds. Nobody knows exactly why. Maybe 'cause you were a little gassy, or because your tummy was a little distended, or because it was Saturday, or because they are crazy food Nazi's or something but...of course I fought them and of course I got them started again.

So now it's Monday early evening. The Dr's are only increasing your feedings by 3cc's every 12 hours for no apparent reason. At this rate it will take 2.5 days to get you back to full feeds. Way too long for you to be without proper nutrition.

So your dad and I are going to go have dinner before he heads back for the week.

and I will go and fight them.

Because I am a mad elephant and I must protect my baby.

You know you wannna....

2011-02-25T14:18:00.000-08:00

Join Team Mason! All the cool kids are!

2011 Walk 4 Kids benefiting the Ronald McDonald House

Come join us as we walk to raise money to support the Ronald McDonald House.

If you are a follower of this blog than you know what an amazing gift the RMH organization has been for my family. The have been our Bridge over troubled waters and have given us a home away from home.

Walk For Kids is a 5k (3.1 mile) Walk that is designed to raise funds and awareness for the services and programs provided by the Los Angeles Ronald McDonald House. Walkers come together for a day of celebration, fun, food, and entertainment. In 2000, the first Walk For Kids was launched. In the eleven years of the walk, it has grown to more than 2500 walkers and last year raised over $325,000. Join us this year on Sunday, April 10th at Exposition Park

We have set a goal of $300 but are hoping to raise more to help other families in need.

Come and join Team Mason as we walk for a great cause. Find out all about it here.

If your not local to LA you can still help by donating here.

I'm so excited to show Mason how strong Team Mason and to pass on that love to other families in need.

Quick update

2011-02-24T23:09:00.000-08:00

it's almost 11:20 I'm counting the minuets till I can call your nurse and get the latest CO2 level and go to sleep.

I would have gone to sleep a while ago but whom ever is above me in the RMH is re-arranging their furniture, or bowling with elephants, or something that is creating an unbelievable amount of noise. When we were in our old room upstairs we never heard our neighbours, now the little time we have to sleep is often interrupted by others staying near. It only adds to how hard this all is.

As bad as yesterday today was so good.

Your CO2 levels were in the 40's, which for you is an excellent level. Your work of breathing is half of what it was yesterday and your stridor is barely noticeable. You look so much more comfortable and I got to hold you for the first time since Sunday night.

We had a nice conversation, I even worked on signing a bit with you, and I managed to stop myself after only giving you 100 kisses.

We've made it through the hardest part and now we will have to give you a few days to recover before we will know how successful the surgery has been.

One of two things are going to happen.

Either you will continue to improve. We will wean you down to the high flow, then after a while to the nasal cannula, and then maybe even off with no oxygen support, then home.

Or you wont get better. We will be unable to wean you off the high flow and then your Dad and I will know we explored and exhausted all possible interventions.

If you are unable to wean we will get you a trach and then, most likely be home in short order.

Only time and your anatomy will tell.

The Dr's are all rosy and positive but your Dad and I are cautiously, but realistic, optimistic.

The surgeon still haven't started feeding you even though you have great bowl sounds and have had 3 bm's. The painfully slow pace the Dr's work at is maddening especially since, now that you are feeling better, your starving.

Just spoke to the night nurse your latest CO2 is 47. A good level for you.

I'm off to get some sleep. Have to be up early and by your beside before the surgeon round tomorrow.

Gotta get my baby some breakfast.

Night love. One more day down. One more day closer.

The longest night of our lives

2011-02-24T06:00:00.000-08:00

I've been sitting here thinking over my life for the last 41 years.

There have been many hard long nights, some from emotional pain, some from physical, but I can say without doubt that last night was the longest and hardest I have ever known.

When I leave here I will have been at the hospital for 22 hrs. I didn't eat breakfast, I only ate a bit of lunch, and forgot to eat my dinner.

I've been sitting in this chair for most of the 22 hrs except when I've been stand at your bedside.

I spent about 30 minuets standing while holding up your head till my arm fell asleep trying to get rid of some of the facial swelling you got from laying on your face for so many hours. Another 3o minuets holding your hand because it seemed to calm you, and endless amounts of time with my face pressed against yours ( so in case you can't hear me I know you will a least feel me) repeating over and over again "it's alright Mason, your alright Mason, Mamma's here, it's alright"

My back is killing me, my knees are pretty bad too. I haven't had anything to eat or to drink for about 12 hrs. Physically I'm pretty much miserable.

I've almost lost it about 3 or 4 times and around 3 in the morning I just let myself cry while the nurse's were distracted looking at something on the internet.

None of this even begins to compare with what you have gone through.

I don't think I can bare to see you stuck one more time. You cry now when someone just touches you.

Your face and boy are swollen.

Your physically and emotionally spent.

I've doubted myself, as a mother, as a nurse, as a person.

Am I doing the right thing? Am I making you suffer needlessly?

Am I fighting the trach so hard for you, or for me?

Is this even worth it?

I don't know when I will have the answers to these questions but it will be shift change in a little bit and I will have to leave while the nurses give report then your dad will come and stay with you while I get some sleep.

The longest night of our lives is finally coming to an end.

We made it baby. It's been absolutely horrible but we made it.

You stayed off the breathing machine and are doing better and better every hour. Your breathing so well your even starting to wake up at times and look around.

Of course everything could change anytime but your looking really good and I'm hopeful you will stay that way.

One more day down.

One more day closer to getting you healthy and home.

CHARGE Mother

2011-02-23T23:46:00.000-08:00

OK, so four post in one day are a bit much but I was reading through Ruben's blog I came across this post and snorted while reading it. Describe me much?

Since I was just battling the nurse to not give you sedation (since you weren't upset just struggling to breath) it seems very apropos.

Thank you Catherine for the late night (or is it early morning now?) laugh.

CHARGE Mother Behavioral Phenotype

1. Above average cognitive functioning, and near genius when it comes to baffling medical terminology.

2. Persistently focused on advocacy for her child.

3. Experiences little need to be socially appropriate when facing difficult professionals.

4. Repeats things over and over because the professionals need extra reminders.

5. May experience sensory meltdowns after school meetings and medical appointments.

6. When confronted with difficult professionals may lose behavioral control.

7. Professionals may have a hard time getting them off track and shifting their attention to irrelevant perspectives.

Timothy S. Hartshorne, Professor of Psychology

Someday this is going to be funny..

2011-02-23T21:15:00.000-08:00

Not today mind you but someday.

Someday, years from now, we will all be sitting around the table after dinner has been eaten and telling stories the way my family does and we will laugh at what you put me through today.

Someday.

So your hanging on but just barely. We have put you back on the vent through a nasal cannula which is the last step before you get the tube back in your throat.

The Dr's feel that putting the tube back down your throat will aggravate the swelling and as long as you can hang on we will. We are going to push it as far as we can and hope you can make it till the swelling decreases.

They are giving you steroids and have you on your belly since your airway stays open best this way.

They have put on an external carbon dioxide (CO2) monitor. It's not as accurate as doing an blood test but it will give us an idea, without having to draw blood, if your carbon dioxide levels are climbing.

If your CO2 levels stay low enough we are going to continue to ride it out. I can't leave your side and plan on staying all night. I can't stay here all night and be by your side tomorrow too so I've called in re-enforcements aka Dad.

Your Dad drove like crazy to get here and is not going to go into work tomorrow since you are so sick.

So we are here.

Waiting

Watching

Hoping

Hang in there kiddo.

So team Mason we need you.

Pray, send out your good thoughts, and cross everything you've got because if this doesn't work. We really don't know what will.

Standby...

2011-02-23T15:16:00.000-08:00

You are off the ventilator.

You are doing good but not great.

In a perfect world we would extubate you and you would breath beautifully. Like a typical baby. Easy, silent, with no retractions of your chest.

But we don't live in a perfect world, and you are anything but a typical baby.

as always a whole team of people including nurses, respiratory therapist, and Dr's are needed to deal with you
Once the tube was out you turned all shades of purple, had a noticeable stridor (hard wheezing), and your saturation levels were in the 70's (95%-100% is normal) and boy o boy were you MAD!

But once you calmed down your color returned, and the breathing got a little easier. Not great but good enough for now.

I know the Dr's are concerned but I'm not ready to count you out yet. We've been here before. Your throat has been swollen and they were ready to re-intubate you. We gave you more time and you hung in there and then with medication and time you got better.

They are giving you steroids to help with the inflammation. Your back on the high flow and although your working a little hard to breath you look good.

your exhausted!

At the same time all this was happening your IV went bad so they tried to start a new one. Your veins just aren't great right now so after two tries they are giving you a rest and will try again later.

An ABG (test for your oxygen level) was done really soon after and the results were terrible. Nobody believe the are accurate so we are going to let you rest for a while and then re-test you.

Depending on the results you will be able to stay on the high flow or will have to go back on the breathing machine.

The Dr has already come by to tell me that you very may go back on the breathing machine. I'm asking him for a little more time.

So standby....

To hope or not to hope...

2011-02-23T09:04:00.000-08:00

That is the question.

Whether it is better to let our hopes get up and imagine ourselves heading soon for home and deal with how painful the crash will be if the surgery doesn't work.

Or is it better to figure we are staying here for the foreseeable future protecting our hearts and our hope and holding onto what little stamina we have left.

I think the second choice might be smarter but it's too already late or maybe it just impossible.

Our hopes are up. Your Dad and I are already making plans, and list, no matter how hard we try we just can't figure out a way not to get our hopes up. I guess there really isn't a way to protect your heart when you love.

So...

So we wait again, we hope again, and we love you.

Yesterday and today your doing well.

Your Dad and I just had to go home for the day to take care of business which of course landed one day after your surgery. We really didn't know what we were going to do we absolutely had to go home for the morning but just couldn't leave you alone the day after surgery.

Aunt JJ to the rescue! She came and stayed with you. She got here in the evening on Monday and stayed with you till around 3 am the got a few hours sleep and then stayed by your side till I got back the next afternoon. I just don't know what we would have done without her.

Within minuets of getting her she got your pain meds increased and you rested comfortably with her watching over you. Don't worry baby. Aunt JJ's got your back too.

Overall your doing really well. You are really swollen with all the fluids they gave you during surgery (your weight went from (3.5 kb to 3.75 kg) and with the increased levels of pain medication your getting they deiced to keep you on the breathing machine an extra day. You also needed another blood transfusion most likely from all the lab draws they are doing on you.

While you are on the breathing machine you are on room air and your labs look amazing so that's hopeful. Your feeding tube site is tender but looks great and is draining a tiny bit of fluids which is a good sign that your tummy is already starting to work again.

I was talking about how sad I was that I didn't get your footprints done or your first photos done like most babies do so Tania was nice enough to get your prints for me. I'm so happy I have them.

((Sigh)) look at your hair! I think you look like something out of the Mad Max movies.

My swollen half bald beautiful baby boy!

So today we are waiting for the Dr's to do their rounds to find out what the plans are for the day. We think they are going to start weaning you off the pain meds and get you off the breathing machine sometime today. We think they are also planning on starting your feeding again a little at a time.

Well what I do know is that we are one day closer to getting home no matter when that ends up being and that's a very hopeful, and happy thing.

Another Step Closer

2011-02-21T17:33:00.000-08:00

Today we took care of two procedures at once. This allowed us to intubate you once. First the G-tube. Then the procedure to remove the flap of tissue that was obstructing your airway (Plasty for short).

The MI-KEY "Mickey" will allow us to feed you without having a tube in your nose or mouth. Not perfect but better. This tube ties into your stomach and helps keep your face free of tape, another plus. It is also much easier to clean and for Mom and Dad to use at home, benefits all around.

The plasty is something we have been asking for to help you breath easier. We hope that by removing the obstruction this will reduce your strider and you will be able to take a deep breath with ease. If your O2 and CO2levels are stable and you stop spending so much energy on breathing who knows you might actually start growing.

The day went well, we were supposed to have surgery at 3:45 PM but things changed and you went in at about 9 AM, much better. you returned at about noon and we were both here waiting for you.

You struggled a little with the breathing tube, it was too far in and actually went into the right ventricle. Well one x-ray and lots of tape later we thought we had it. One more x-ray and another adjustment and of coarse more tape and now you are good.

Mama is with you while I type. You are so strong. You do amaze me.

Mama is incredible too, being here by herself. She is getting some help but I do not know if the roles were reversed if I could do it by myself.

So you owe Mama. I would advise a flower and a card on every anniversary of the day you came home. Because with out our Lioness we would still be waiting to see what happens instead of another step closer.

-Dad

After the surgery's your color looks great!

it was not enough to give you a bad hair cut but another tube at least this one is breathing for you.

"M.I.C.K.E.Y. M.O......."

He's Back!

2011-02-21T11:55:00.000-08:00

Mason has come back from OR. We saw him as the doctors wheeled him by back to him room. His color looked good and we are now waiting to join him. Both procedures went well. Now we wait to see if everything worked. The G-tube needs 24 hours before we can start feeding him, and the plasty will be 24 to 48 hours before we will know if it worked. Mason came through it all like a champ!!!

Through the double doors again..

2011-02-21T10:38:00.001-08:00

Once again the hated double doors to surgery. Our fourth trip and hopefully our last trip for a long while.

Your surgery was scheduled for 3:45 pm today and they took you at 9:00 am. Even though we had to rush to get here it's great that your going so early so you wont have to go the whole day without eating.

The plan is to do the Supraglottoplasty where they will sedate you then remove some of the extra tissue around your vocal cords then to do the feeding tube surgery. We don't actually know which they will do first but since they usually do clean to dirty in surgery they will most likely do surgery on your throat first then your stomach. We figure it will take a few hours at least.

So again we need team Mason. Send your good thoughts, pray, for a quick and complication free surgery and that this is the solution to your breathing problem that will get us on the road to home.

your favorite nurse Tania

This is your primary nurse Tania. Nurses have to volunteer to be a primary and we were lucky enough to have Tania volunteer to be yours. By the time your old enough to read this you may not remember her so let me tell you that you love her. You always rest easy and have a good day when she's taking care of you.

cousin Whitney thinks you look like a badass with your new haircut

On a side note you got ~~butchered~~ a hair cut yesterday. They shaved the whole right side of your head. I'm less than thrilled about it but you needed an IV and it was the only place they could find one.
I was hoping to do your newborn pictures soon after we got home. I guess we will just have to make sure your "good" side is always toward the camera.

We wait and we hope...

2011-02-19T23:30:00.000-08:00

Things have been quite here.

Just waiting for Monday.

Granny came and spent the day with you while I took Pierce to have lunch with Dad.

We are so hopeful that this surgery will be the answer to your breathing problems. We don't know what time your surgery will be yet but should find out tomorrow.

You will be on the breathing machine for a few days so it will be Wednesday or Thursday before we will start to wean you off and see how you are breathing. It will probably be the end of the week at least before we will know if there is any improvement.

So now we wait and we hope.

We will keep you updated on Monday on how it goes.

Pictures from the last few days

You got an ultra sound of your diaphragm. You hated it.

Another tub bath. You hated this too but you sure smelled better.

All clean and cute!

Ever get all ready to do battle.....

2011-02-15T18:56:00.000-08:00

only to find out there was never a war?

That was what today was like.

Last night I barely slept. I kept going over my arguments in my mind preparing to fight to have the surgery done. I reviewed anatomy and what I knew about your respiratory status thinking of every thing I could to use as ammunition in our war against the Dr's.

Well, knowing the way the hospital works even though our meeting wasn't till 10:30 am I got to the hospital early. I decided to stop by the cafeteria first figuring I wouldn't get another chance to eat till the afternoon.

I had just sat down to eat when my phone rang and it was your nurse Susan asking where I was and if I could get there asap so I could talk to the Dr (I was already out the door before she finished her sentence).

So I got there. There was the ENT, the ENT fellow, tow neonatal fellows, two residents, and me. I took a deep breath and prepared to hear the Dr out and then get ready to argue.

Then the Dr showed me the picture of your throat (looks the same as here) and discussed how your stenosis was only minor and not something that need to be treated but that they had seen the laryngomalacia (extra tissue around your vocal cords) block your airway a few times and he felt, if we agreed to it, that surgery was warranted to treat it.

a video of you blowing bubbles and looking at your mobile

I was stunned. Here the surgeon was saying you needed the surgery that we had been fighting to have done for the last 3 1/2 weeks JUST LIKE THAT!

So he said to me I could go and think about it and let him know if we wanted the surgery done. I of course said I didn't need to think about it. We wanted it done.

The ENT then said when I was ready to sign the consent to contact his fellow and I could sign the consent. I again said no need to wait I was ready. I even tried to convince him to take you tomorrow but no go. At least I tried.

So the consent is signed. You are to have the surgery on Monday. I have also requested that they do your feeding tube surgery at the same time to avoid intubating you more than once. They all said they would try but couldn't promise anything.

Since we have 6 days I will continue to push, beg, whine, complain, whatever it take to get both surgeries done at the same time. Maybe they will agree just to shut me up. LOL

Now we just have to hope and pray that this surgery is what you need to breath on your own or at least well enough to go home on oxygen.

Did you hear that Mason? HOME!

Well there may not have been a battle but I still feel like we won a great victory for team Mason.