Warning mad elephant...

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....

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

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

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

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..

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...

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...

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

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!

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..

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...

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.....

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.

I'm goning to scream!

Seriously I think I just might.

Or I'm going to cry. Or vomit. Something.

But before I get to that I need to catch up.

Friday we spent a long happy uneventful day together.

You spent some time in your bouncy seat. It's the same one Pierce used when he was little. I sure wish I had access to Pierce's babies pictures so I could compare you two in the bouncy seat. I can't believe how little you look. The vibrating box didn't work so we are going to get you a new one.

You sort of liked it. Sort of.

Come hang out in my crib! (see Mom's illegal Diet Coke in my bag again? Naughty!)

Then we tried sitting up with the help of my Boppy. You loved it! (yeah right)

Saturday your Granny came as she always does to babysit you. I think you look more like her everyday.

Hi my Granny!

Here you are talking to your Granny. I think your saying something like..."and then Mommy said to the Resident and then he said... and then Mommy said I don't agree... and then he said.."

Then you got to meet cousin Maureen (don't tell anyone but she cried when she first met you 'cause she thinks your so beautiful)

See your little feet in cousin Mo's hand? Adorable!

Then you got to meet your cousin Caitlin. You were your sweet and lovable self when she was holding you....


Ah well mostly anyway. (this is what we call your mad purple Popeye face)



Last (but certainly not least) you got to meet your cousin Kelly. You two almost have the same hair do! Kismet



After Daddy got off work Saturday he picked up Pierce and brought him to stay with us for the night. Daddy went and stayed with you while Pierce and I played with the trains at the RM house.





Yes, your brother is in his Halloween pajamas in February sitting on top of the table playing with the trains at 9:30 at night. Is this a problem? Nope around here we have learned to let some things go.



Then when Daddy came back from the hospital you two watched movies.





On Sunday your Tio Alex, Tia Lluvia, and your Abuelita came to see you (your Dad forgot to bring the camera..bad Dad!)


Abuelita got to hold you for the first time. She held you for hours while the rest of us took Pierce to ride the train at Griffith park.

Later we all went to dinner and then Pierce went to stay with Abuelita for a few days.



So now onto the scream/cry/vomit parts....


So after dinner on Sunday Dad went back to sit with you and I went rest back at RMH where I got a call from resident at the hospital (almost lost it when I saw the hospitals phone number till the resident told me you were fine). He told me that a mistake had been made. For most of the day you had gotten only the breast milk fortifier and not breast milk or formula.


So basically you hadn't been fed for the whole day. He told me they ran test to check all your electrolytes and everything was fine but they just wanted to let me know. Then he told me that since you were having the scope the next day at 1 he was going to make you NPO (nothing by mouth) at midnight.


So that would mean you had gone without food for 12 hrs, would be able to eat for 4 hrs, and then go without food for another 14 hrs.


After thinking about it I called the resident back and told him I felt holding your food at midnight was unnecessary. That from my experience (and also from what the anesthesiologist had said) eight hours was more than enough so I didn't feel they should hold the feeding before 6 (actually it should have been 5 but I don't do math well when tired).

The resident and I went back and forth about it for a while and then he said he would talk it over with the Dr and would let your Dad know what they had decided.


So guess what they decided....roaaarrrrrrr! LOL


So they held your feeding at 6 am and the plan was to do your scope with the ENT at 1:15.


Well 1:15 came...and went


then 2:15


3:15, and 4:15 came and went


Finally at 5:30 4 hours and 15 minuets after you were supposed to go to surgery they finally took you. So you went without feedings for 11 1/2 hrs before they even took you. Imagine if they had held your feeding at midnight.

getting you ready to go

I'm starting to hate these double doors

So Dad and I stayed in the waiting room and in about 45 minuets they brought you back. We think we saw the Dr pass us bringing you to the room and then pass us again as he left but, if it was him, he never stopped and talked to us.

When we finally got to go back into the room to see you, you were cold and pale and not breathing too well. The got you warm and breathing better but they were still concerned about you.

Since it was shift change they made us leave. We had asked to talk to the ENT to find out what the scope showed but found out that he had already left for the day and would come and talk to us at 10:30 tomorrow. But the resident was willing to basically tell us what the ENT had found.

He said they found some floppy tissue around the vocal cords (we already knew that), and some mild stenosis (we already knew that) and the plan was to do......get this.....NOTHING.

Yep. We waited a week to find out they plan on doing nothing. Just let you grow out of it.

So apparently the fact that you can't breath isn't important and they are just planning on having you stay at the hospital till you out grow the breathing problems.

That should only take a year or two. Maybe a little more.

Good plan Doc!

So we have asked the neonatologist to be at the 10:30 meeting with the ENT where we plan on no longer being patient and understanding about the hospital's and Dr's lack of urgency on getting you home.

We are going to demand a plan to get you home or demand a plan to get you discharged so we can get you to Loma Linda.

So now it's 11 pm. They have finally gotten your breathing under control and are putting in your tube so they can restart your feeding. (17 hrs without food for those who are keeping count - 22 hrs if the resident had his way).

Dad's best friend Sean's oldest girl is Ella. She had an assignment to write what she would do if she had $100,000 dollars that she couldn't spend on herself.

She wrote - "I will give my money to my cousin who has heart problems. He is two months old"

I don't know what I love more, that she wants to give you the money, that she thinks of you as her cousin, or the drawing of you all bundled up with IV lines.

Allison and Sean you have raised a beautiful loving little girl and Mason is so lucky to have a cousin like E, J, and A. Love you all.

I was watching the movie Shawshank Redemption while writing this blog post and these lines really seemed relevant to our current situation.

"Bad luck, I guess. It floats around. It's got to land on somebody. It was my turn, that's all. I was in the path of the tornado. I just didn't expect the storm would last as long as it has."

I guess it's just our turn baby but the storm has got to pass soon.