Monday, January 31, 2011

There are roses in the lobby...

of the Ronald McDonald house tonight.


A little boy named Carlo lost his battle today 1/31/11.



We know nothing about him other than he lived, he was beautiful, and now he's gone.

His parents are staying in room 75. We are in room 79. I can't imagine the pain they must be going through.

It puts today in perspective doesn't it.

No matter what happens or how hard it is we WILL be taking you home someday and for that fact alone we are so blessed.

Goodbye Carlo. Fly free beautiful baby boy.

Never put your eggs or hope in one basket....

Our insurance company that approved our transfer to Loma Linda is now denying it. The are now saying you will have to be discharged home before your care can be transferred to LL.

Your Dad is on the phone with our insurance but of course it's after closing time and there is not much we can do tonight. We are still going to fight for the transfer but it's for sure not going to happen today.

We've also lost our spot on the waiting list at Loma Linda too so now even if we get the approval back tomorrow we will have to wait our turn for a bed again. Who knows how much longer that will take.

I can't pretend that I'm not devastated and I'm starting to feel desperate.

Your Dad is running out of leave from work and will have to go back in a couple of days. We are close to our max stay at the Ronald McDonald house (we can get back in after we are gone for two days).

If we can't get to LL then I will have to stay here without your Dad. I can't imagine how I'm going to do it all by myself. But we will figure it out.

Now another night away from your brother.

Never in my life did I ever imagine I would cry in public so much. Thank God for big black sunglasses.

Sorry to be such a Debbie Downer

I know tomorrow gonna be a better day. Today just sucks.

I held you for two and a half hours today while you slept.

You are so beautiful.

Sunday, January 30, 2011

There's a rumor going around...

That Loma Linda is going to have two discharges tomorrow. If nothing happens (like an ER admit, or a new sick baby born) one of those beds is supposed to be ours.

Fingers crossed!!!

Dad and I are cleaning and packing and hoping.

Day of life 24...

Sounds so...official doesn't it? That's what the Dr's and Fellows say when they round on you..."This is Mason Lozano day of life 24"

So we had planed on your Granny coming to sit with you yesterday while Dad and I went to Aunt JJ's to spend the day with Pierce. But unfortunately your brother has - and I quote "raging double ear infection" according to our pediatrician Dr K.

He said that anyone who was going to be around you should NOT be around Pierce because of the infection risk. It was so hard not to see him but we are hoping to be home soon and get to be with him on a daily basis so that made it a bit easier.

So instead your Dad and I took the day off while Granny watched over you. We went to have brunch at this little cafe just down the street. It's made to look just like a cafe in Paris and did remind your Dad and I a lot of the places we ate while on our honeymoon.

We spilt an omelet and a big basket of bread, which while not as good as the bread in France, was dang good for these parts. Then we saw the movie "True Grit" which was great but left us somehow unsatisfied.

After the movie we came back and took a nap then met your Granny for dinner. I enjoyed it all (sad to say mostly the nap) but missed you every second of the day. After dinner your Dad and I took our normal evening shifts at your bedside.

You were quite fussy for me but also had 4 poopy diapers so I think your tummy was upset. I gave you a bath again and scrubbed you from head to toe. Boy do you hate it! It's kinda amazing how many colors of red you turn when you are mad.

The nurse changed your feeding tube (it's now in your nose) and tape on your nasal cannula so I got to see you with any tape and hardly any tubes for the first time since you were born. I tried to get a picture but it didn't turn out well.

Today, Sunday, day of life 24 not much is going on.

You are on only 1 liter of oxygen and your labs are so good they aren't going to repeat them for a while. They are going to keep you at 1 liter and not try and wean you till you have a sleep study done to see if you are having apneic (stop breathing) episodes.

I did a little test of my own yesterday when I was holding you. I took the prongs out of your nose to see how you did. You did fine for about 5 minuets then your oxygen saturation did drop without the oxygen. Your nurse and I were talking about it and it doesn't seem like you really need the oxygen (your on room air) as you need the "push" of air to keep your airway open.

This is just another example of why we think you need the surgery to remove the extra tissue on your vocal cords but that is a fight for another day.

You are up to 51 ccs of formula/breast milk and absorbing fine. Sometimes when they increase your feeds you have a bit of spit up and seem to need time to adjust to it but when everything is said and done you are doing great with feeds. Still no signs of acid reflux.

Your weight is something we are watching closely. You had been losing for quite a while but have been slowly gaining over the last few days. Last night you weighed 2.75 kg which is just over 6 pounds. Finally over your birth weight! Woo Hoo!

According to the assessment the occupational therapist did on you it's looking like a feeding tube is most likely. It would have been great if you could have just taking food by mouth right away but you will get there eventually.

The way your Dad and I are thinking is lets get the feeding tube in and get you home. Get you eating and growing and we will work on your swallowing and feeding by mouth at home.

As far as we know everything is a go as far as insurance is concerned for our move to Loma Linda. The Dr's at CHLA are good with us going and everything is set on their end.

Now we are just waiting for a bed at LL. Cross your fingers we get one tomorrow.

Dad and I are going to skip the late night shift and come back to the RM house and pack in hope that we get our walking papers tomorrow.

Here's hoping that on day of life 25 you will be tucked in at Loma Linda and so much closer to home.

Friday, January 28, 2011

Bless this bended road

Dearest Jelly,



I can remember clearly laying on the exam table watching you on the monitor during your 23 week anatomy scan. I was fascinated by your heart. I remember thinking how amazing it was that I could see all 4 chambers. It never occurred to me to wonder why the Dr. kept going back again and again to your heart.

Even when he said the words "I see a concerning shadow on your baby's heart" I wasn't really worried. We had several scares with your brother that all turned out to be nothing and so I learned long ago to not to get all worked up for a maybe.

It wasn't till the Dr. turned to the tech and told her he wanted me in for an echo the next day that I started to wonder. I know what it takes for a Dr to order a stat test and for the Dr to do so wasn't a good sign.

But I wasn't going to worry I told myself. The Dr said it could just be an artifact and till he proved otherwise that's what I was what I was going to hold on to.

Then the tech took me to the front counter to the secretary to make the stat appointment and I saw them turn and look at me over their shoulders and whisper.

No matter how much everyone tried to re-assure me. Once I saw the technicians whisper I knew we were in trouble.


More than this....there is nothing more than this


So after many appointments an echos we found out you had a serious congenital heart defect. We did our research, read blogs, and prepared ourselves for your surgery. Many tears, and sleepless nights followed as we spent the last months of your pregnancy hoping against hope that you would survive your surgery and come home to us.

The Dr's told us to prepare for two weeks (I figured three) at the hospital recovering from your surgery and then to deal the rest of your life with whatever heart issues you ended up with.

You flew through the surgery so well in fact that now that even your cardiologist says your heart issue....well just isn't an issue any more.

So you were born, open heart surgery done, and then recovery.

Everything we had prepared ourselves for till the diagnosis of CHARGE

It is a bend in the road we hadn't expected.


Kangaroo care time with Mama


So now we are on this new bend of the road and the journey is going to be much longer than we anticipated.

We seem to get a new specialist every other day. Every new Dr seems to feel the need to tell us "How serious" your diagnosis is and to "expect many hospitalizations".

I find myself having to bite my tongue to avoid the almost uncontrollable urge to say "NO SH*T SHERLOCK!". Forgive my language but sometimes it's called for.

I know they are only doing their job, only trying to be helpful. But honestly I don't find their pessimism or bleak predictions helpful at all.

The FACTS are nobody knows the future. They may have an MD with their name but they don't have a crystal ball.

We are not naive. We've done re-search. We know there are many challenges related to CHARGE syndrome that you may face.

But then you may not. Already you have shown you don't have many of the most serious complications related to CHARGE.

All the Dr Dooms in the world, with all their knowledge, don't know you. They don't know what you are capable of.

I wont let them tell you that you can't, or won't. Only you will tell us what your limits are, if you even have them.

Your Dad and I are here. We already have our armor ready and are prepared to slay any dragons that get in your way. I have a feeling that as soon as your brother is old enough to understand such things he too will be one of your greatest champions.

As unexpected as this bend in the road has been I wouldn't wish for a different road because it would mean a different you and that is something that I just couldn't bear.

It makes me think of a country song by Rascal Flatts. Forgive me if I change the lyrics a bit to better fit us.

"This much I know is true. God blessed the bended road that has lead me straight to you"

and that's how I feel.

Blessed to love you.

Blessed to be your mother.

Blessed to be on this bended road with you.

Catch-up and update part 2

So still playing catch-up. Now that I'm able to hold you as much as I want I spend all my free time doing so. I love it but it cuts way back on my Internet time.

We have been working with our insurance to get us transferred to Loma Linda. At first their answer was NO, then well maybe, now it's yes but we are waiting for a bed.

We hope that we will be moving by Monday but considering we are working with an insurance company I will believe it when we are walking out the door.

For now CHLA continues to work on helping you progress and so far so good.

You remain off the breathing machine, over 60+ hours now, and although your oxygen labs aren't perfect they are pretty good and now they will start trying to wean you off the oxygen all together.

You are on 2 liters now, soon they will try 1 1/2, then 1 and so on. The plan is to take it slow. Considering the issues you have had we are more than OK with slow and steady.

You are getting, and absorbing, 41cc's of formula/breast milk at a time now. They tried 47cc but you spit up a bit so they will stay at 41cc's for now and try to increase the amount again later. 41cc's is amazing and so we are really happy with your progress.

Knock on wood but you are showing no signs of acid reflux, a big problem with a lot of CHARGE babies, and we hope you will continue to do well with the eating/absorbing. We need to get some meat on those chicken legs!

We have started working with an occupational therapist to see if we can get you eating by mouth. IF we can this would be the next biggest hurdle to getting you home. We are taking it one day at a time as many babies with heart/CHARGE/clefts/medical problems have issues with being able to eat my mouth.

They are working with special nipples and bottles for your cleft. The OT feels you have a strong suck and show interest which is all good. You are still working on the swallow part and tend to have a "holy heck what did you just put in my mouth" look when we give you the bottle. Still the OT thinks it's a good start and is hopeful that with some practice you will get the hang of it.


I just love that the instructions are in Chinese

Assessing your suck strength

See the surprised look you get when we give you the bottle?
A little formula in the nipple wasn't so bad
Auntie T came for a visit on Monday and finally got to hold you!
Sharra Ackerman and family sent us fruit! It's amazing how much we are craving fresh fruit

Team Lozano thanks you and says YUMMMMMYYY! I saved the base. It will fit right in with a 3rd birthday we are planning.

Last night the nurse brought me a big old tub of warm water and I got to scrub you all clean. Afterwards I dressed you for the first time. Don't you look sharp little man!



So the next few days we are going to work on getting you to eat by mouth and get you transferred to Loma Linda.

Saturday Granny is coming to take care of you so we can spend the day with Pierce! We got to spend a few hours with him yesterday and can't wait to see him again.

Wednesday, January 26, 2011

Playing catch-up and an update

First things first.... as I type this it's 9:30 pm and you have been off the breathing machines for...wait for it....wait........ 29 1/2 hours!!!!

Not only are you off the machine but your blood oxygen levels are actually improving.

Get out your twirly skirt and get ready to sing with me!!!

So the laptop was out of commission for a day. Your mad genius father managed to Macgyver it (with only a set of small screw drivers and spit!) and we are back up and running. I tell you your Dad is handy to have around.

We haven't really blogged for three days so forgive if this is long but I have a lot to catch-up on.

First Monday was your two week re-birth day and don't you look marvelous darling! Not only are you off the vent now but you also got your pacer wires removed, the Art line and stitches from your right wrist, and the sutures from your chest tubes taken out. You have so many less wires your almost easy to pick up.

Monday January 24th 2 week re-birthday



On Monday you also had a Laryngoscopy and a Bronchoscopy which Dad already explained here.

Off for your next procedure

Down the same hallway they took you for your heart surgery.
If I never see these double doors again it will be too soon!


The examination of your throat and down to you lungs showed that you have a Laryngomalacia (image 001 and close up 002) It's best described as floppy tissue above the vocal cords that falls into the airway when you breath in. This explains the gasping noise you make when you breath in and out.


They also found that you have a stricture of your trachea (image 003) and, just because you can never do anything boring way, you also have an opening from your trachea to your lungs (image 004) that is very uncommon but not something that will, or is, causing you any problems. It's just unusual.

So there is a surgery that can get rid of the floppy tissue above the vocal cords but they only do this surgery when it's medically necessary (ie something like breathing problems). Your Dad and I are quite surprised that you not being able to breath without the aid of a breathing machine didn't qualify as medically necessary but OK.

The really great news is that BOTH your vocal cords are there, and working great. Now they just think you need more time till you can make a louder cry and such.

The little hat they had on your head during surgery. Adorable no?

I thought it would look cute on your glow horse so he's wearing it now. I don't think you mind. It was a little tight for your big 'o head.




You and Glowy rehashing you day


You are working on your first evil master plan!

Tuesday you had a full body MRI. They wanted to avoid having to sedate you (and then have to intubate you) so we kept you awake so you would hopefully sleep right through the test. We gave you your first bath (with wipes) to clean you up and keep you awake.




You loved liked hated every second of it. Just look at how mad you are!


It took 3 1/2 hours. They said you did great and only moved a little bit so no sedation needed. We got the results today. You have all your ear bones (missing in many CHARGE babies) so yay!
An other than one weird artery to your head (which they are looking into but don't think is important) you look fantastic.


Well there is more to update you on but I can barley keep my eyes open so I will try and post about your first experience eating tomorrow.
30 hrs now off the vent!
You constantly amaze me.

I can't wait to amaze all your Dr's!

Do you believe in miracles?

Have you ever seen one?

I have.

BECAUSE MASON IS OFF THE BREATHING MACHINE!!!

I don't know how, I don't know why, but it's around 8:30 am as I'm typing this and Mason has been off and doing great for about 17 hours now.

Maybe it's because he's eating and the calories are giving him more strength, maybe it's because he's stronger, maybe he just deiced it's time, but for whatever reason he's off.

And I now believe in miracles.



The last time we tried to wean him off, about a day ago, he didn't last more than 10 minuets.

I feel like getting a really twirly skirt and finding a big mountain and spinning around, and around, singing at the top of my lungs "THE HILLS ARE ALIVE.."

but maybe I'll just walk around with this smile that goes from ear to ear and ask everyone if they believe in miracles.

So now, again, this person who has no right to ask is asking anyway. Send good thoughts, prayers, rub Budda's belly if you pass one, that Mason stays off the breathing machine.

Because if he does......we are so much closer to HOME!!!

Tuesday, January 25, 2011

A Small Camera

On Monday we found out that you were going to have a Laryngoscopy and a Bronchoscopy. basically they put a camera down your air way to your the edge of your lungs. We were trying to find out why you can not get off the ventilator.



For the first time in a while we had some results. I am sure your Mom will have all the clinical verbiage but basically you have to much flesh around your vocal cords. that is causing a partial blockage of your air way.



Just past the vocal cords your wind pipe is a little narrow which adds to your respiratory distress. Just to add too everything else you have a third bronchial tube. Tomorrow you will have an MRI to look at your head and body to get a better picture of what is going on.



The best answerer we received on Monday, the Doctor thinks that both your vocal cords are moving, your cry is so soft because you are not moving enough air to make noise, not because your cords are paralysed. That is great news.

Your pacer wires and the rest of your stitches were removed today. Another step to getting you home!



-Dad

Monday, January 24, 2011

A New Kind Normal of 1.5

Your mother is right, we are unstoppable together.

To reiterate we will never be able to thank Pat and Jenn for making Pierce a part of their family while we are all here.

Sunday we watched the playoff together, neither of our teams are going to the Superbowl so we will be watching the commercials.

You do like action adventure films. I moved the screen to the other side of your bead and your little eyes followed, a low tech way to determine if you can see but its good enough for me. There are now 6 babies in the room with us and boy are your new neighbors loud. You seem to wake up every time that they start crying, and once one goes off you all start.

We are starting to get used to the NICU. While all the staff are professional we have found some nurses that we trust with not just your physical care but your emotional needs as well. That is very reassuring for us.

Your feeding is going well, Sunday you weighed 5.6 lbs. That is a great!! Here is to you my boy, we could not be prouder of you. Every day you impress me more and more.

-Dad

A new kinda normal...

So no blog post yesterday. Neither Dad or I had it in us. The highs and lows seem to come in waves. Well, really it's more like the lows, lows, highs, lows, lows. Come in waves. Yesterday was just one of those days.

I don't really have time for a full post right now but will update tonight when I have more time.


Video of Mason and his glow Seahorse that Auntie Kim gave him. He loves it!

video



We've come to the point where we are realizing that we aren't getting home any time soon. You aren't progressing on the breathing machine and there is nothing that is going to change any time soon that will help you progress. This realization has been a blow to our spirits, and our stamina.

The Dr's told us to expect a 2 week stay. We planned on a 3 week stay. It's looking more like (months?).

This wouldn't be a problem if it were just you. I would probably just get a job at the hospital next door. Your Dad would find a way to commute to his job in Anaheim from here. We would just move our life here, as long as you needed.

But it's not just you. There is your brother too.

We don't talk about Pierce on the blog much. Not because we don't think about him but because we can't. We feel like we are suffocating with how much we are missing him.

The only way we can deal is to not think about him because thinking about him hurts too much. The longest we have ever been away from him before this was 48 hrs and we barley survived the separation. Now we have barely seen him in over two weeks and we are starting to shut down.

You are our lives. You TWO are our lives. The way I miss you minuets after walking away from you bedside even though I been with you for hours is the way I feel about your brother every second of the day.

We are a family and this family just doesn't work without all of it's members.

The reason we have been able to be here the way we have is because of my sister and her family. We are so blessed to have them.

Their home has always been like a second home to Pierce and they have always loved him and treated him like the 3rd child they always wanted and never had.

We can walk away from him because we know they love him as we do, that all his needs are being met. While he is with them we don't have to worry and it's been an amazing gift. They my sister Jennifer, my bro in law Patrick, my niece Lauren, and nephew Jonathan have gone above an beyond for us and we will never be able to thank them enough.

But we need to get home. We need to get back to a normal life. A new kinda normal.

Since you are so heart healthy now (Yay heart!) you no longer need the specialized care that only CHLA can give you so we have started the process of getting you transferred to Loma Linda hospital which is much closer to home.

There is so much more I need to update about but I'm out of time so we now hope. Hope that insurance will agree to the transfer, hope that Loma Linda can handle all your specialized needs, hope that they will accept us, hope that we can get this family back together soon.

I feel so blessed to have my family.

I am nothing without them.

I am unstoppable with them.

Saturday, January 22, 2011

Whole lotta questions going on...

OK so getting that sick was NOT a good idea!


I have to say, in my defense, I did tell my OB about my back pain when I went to see him last week and he said it was nothing (in his defense back pain is a pretty generic symptom). I didn't have any reason to suspect I had a urinary track infection till just about two days before I got really sick and then it only seemed mild.

Also I because I am pumping and trying to increase my supply I have been drinking way more water than I usually do. Is it enough? No. But way more than usual.

I spent from 8 am Friday morning till 8 am Saturday sleeping and taking pain meds every two hours and generally just feeling so crappy. I can't remember when I've last been that sick.

Your Granny says she remembers - it was when I had a kidney infection in '88. So I guess kidney infections and I don't mix well.

True to form 24 hrs of antibiotic and I'm back and running at 95% capacity. I did take it easy today as your Granny is here and taking care of you.
I didn't get to see you from Thursday night at 10:30 till Saturday at 10:30. Unbearably long time!

Me just before I got really sick. I think you can see it in my eyes


Thank god for your Granny. She has always been there for me, and for you. Did you know your Granny has been in your life from the second you were born? Just like she was with your brother. Here she is again at your bedside taking care of you, and at the same time taking care of me.


It's my greatest hope to be a great mother to you. That when you look back on your childhood and our relationship you can say - my Mom's was always there for me and I never doubted, for even a second, that she loved me, and always would.

I hope that you feel something like that, and if you do, we owe it to this woman. She's the one who taught me how to be a mother. She's the one who taught me to be everything I admire about myself.

I've always loved the saying "Everything I am, everything I will ever be I owe to my mother." Well everything I am, and everything I will ever be as a mother, I owe to my mother too.

I just wanted to make sure I told you that.

So on to the questions...

We are all settled into the NICU and are trying not to miss the CTICU too much (but it's really really hard) :/


All of your test for DiGeorge syndrome have come back negative. So you 100% DO NOT have DiGeorge or any of the Q22 deletions. So now the Dr's are asking if not DiGeorge than what?




The answer seems to be CHARGE syndrome. The major markers for CHARGE syndrome are;

1. Coloboma of the eye
Coloboma (sort of like a cleft) of the iris, retina, choroid, macula or disc (not the eyelid); microphthalmos (small eye) or anophthalmos (missing eye)

2. Choanal atresia or stenosis
The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia). It can be unilateral (one-sided) or bilateral (both sides), bony or membranous.

3.Cranial nerve abnormality
Missing or decreased sense of smell and/or Swallowing difficulties and/or aspiration and/or Facial palsy (one side or both)

4.CHARGE outer ear,middle ear, and inner ear
Malformed outer ear, malformed bones of the middle ear, malformed cochlea

Minor characteristics of CHARGE are;


Heart defects Can be any type, but many are complex, such as tetralogy of Fallot
Cleft lip +/- cleft palate Cleft lip with or without cleft palate, cleft palate, submucous cleft palate
TE fistula Esophageal atresia, Trancheo-esophageal fistula
Kidney abnormalities Small kidney, missing kidney, misplaced kidney, reflux
Genital abnormalities Males: small penis, undescended testes
Females: small labia, small or missing uterus
Growth deficiency Growth hormone deficiency Other short stature 70%
Typical CHARGE Face Square face with broad prominent forehead, arched eyebrows, large eyes, occasional ptosis (droopy lids), prominent nasal bridge with square root, thick nostrils, prominent nasal columella (between the nostrils), flat midface, small mouth, occasional small chin, larger chin with age. Facial asymmetry even without facial palsy
Palm crease Hockey-stick palmar crease
CHARGE Behavior Perseverative behavior in younger individuals, obsessive compulsive behavior (OCD) in older individuals

This is how you get your feedings. You don't seem to mind



So here's what we do know


1. We found out yesterday that you do have a Coloboma in the back both your eyes. They don't believe this means you will be blind but they won't be able to tell how much, if any, your vision will be affected till your retina matures.

2. Based on the initial examination you don't have Choanal atresia or stenosis (narrowing of nose or throat). They do believe you have either a paralyzed vocal cord or redundant tissue on your vocal cord (one person told us right, one said left). The plan on doing a indepth examination of you sometime this week as soon as we can get a spot in the OR. We hope we might find a reason for your respiratory difficulties so we can get you off the vent and home!

3. You have the facial palsy and from what we read it wont go away. We don't know yet if you have a sense of smell or taste and are not sure how we will find out.

4. The shape of your ears are normal. You are scheduled for a hearing test this week. Fingers crossed your hearing wont be affected.

We know you have heart defects, and a cleft in your palate, but your kidneys are normal, your genitals are normal (bet your glad I shared that huh?), you almost 20 inches long (same as your brother a birth), and as far as we can tell you don't have the typical face of a CHARGE baby (the geneticist didn't feel you had any facial abnormalities either). I need to check out your palms tonight.

This is how you look after your feeding. Ahhhh that's a content baby! Your forehead is all red because you were hungry and had been crying



So what do we know? Well you have a quite few of the characteristics of CHARGE and there are a lot you don't have. The Dr's are quite sure you have it but then they were 100% sure you had DiGeorge too.

The way I see it is that even if you do have CHARGE once we get you past your breathing problems, all your life threatening problems are taken care of. You heart is completely healed, you kidneys are perfect, you are eating and absorbing your food.

What's left is hearing, vision, smell, taste etc and while I hope none of these turn out to be a problem as long as you come home healthy and happy I we will deal with whatever else is to come.


Someday maybe we will have an answer to all these questions for now the only one I really care about has been answered.

Will you live...Yes!

That's all I need.

We will deal with the rest as we go.

CHARGE

Last night was good, you seemed content. You are now getting 11c c every three hours. You did lose more weight but we are hopeful that you will start gaining some soon. Officially you are now at 4lbs 8ounces.

Your blood work came back normal. Looks like you no longer need Calcium.

There was a new test done today looking at your eyes. You have holes in both eyes so we are not sure what that will mean in the future but you are scheduled for another eye exam in three weeks and a hearing test sometime this week.

The syndrome that you may have is diagnosed as Coloboma. That and other things that you have lead us to believe that you have CHARGE Syndrome.

Instead of missing chromosome 22 you may have a mutation of chromosome 8. This explains the partial paralysis in you face and vocal cords, and the heart condition. You are scheduled to have a camera placed down your nose and throat to take a look at what is causing your breathing issues. Hopefully we can get some answerer's and get you home.

I got top hold you last night you were a little fussy but that was because you were hungry. Like clockwork every three hours you were hungry. We did have a Si-Fi marathon. You did not seem too interested so we will try some action movies tonight.

We placed you on your stomach for the first time. You were not sure at first but man did you settle down for a long nap.

You are now down to one IV and the Picc line. We just have to work on the breathing tube and bottle feeding. I have to admit that I obsessed reading about CHARGE on the Internet last night.

Sorry I promise not to obsess tonight.

-Dad

Friday, January 21, 2011

After the ER

Well your mother is fine in a lot of pain and feeling so guilty that she cannot be by your side. Granny is coming out to help us tomorrow. Mom should rest for a couple of day's but knowing her she will be there tonight. I hope not you and I have plans.

Tonight I think we should have a Sci-Fi marathon. I will bring the popcorn and diet coke, you get the candy. Let's go over your progress.

Today we removed Two IV's and a central line. Your respirator was cut by a third. You are now getting 8cc every 3 hours (that is like a fest). No pain meds today. Your calcium and red blood cell levels have held. Your arm looks a lot better after the dye leaked during your scan for the pick line.

Some new test will focus on your air way and lungs, today you will be scoped to see what they can come up with. You are also getting an eye exam to see if there are other possible issues. with some luck you will put on some weight. Do not tell anyone but you have chicken legs. Don't worry a few steaks and we will take care of that. I going to see your Mom then I am off to see you.

Sorry when Amy feels better we will get pics in. I allowed to touch the Pics.

-Dad



A few picutures from your trip to get your Picc line. Yep! I take pictures of everything.




A new plan...

Yesterday I woke up to the news that you were moving to NICU. The doctors at the CTICU decided that you were no longer a heart baby. So you were moved to the unit that handles preemies, since they deal with a lot of respiratory distress issues this would be the best option to help you take the next step.

Auntie Val came to see you. She hasn't seen you since the day you were born. She took some beautiful pictures of you.

I also want to put the pictures she took of you but she hasn't sent them to me. For now you can check them out on her blog here.

So after your picc line was put in you were moved to the third floor. Half way to the sixth, I would say that is progress. the accommodations are not the same on the third but the level of care is. We are back to wearing yellow gowns so the pics are accurate.

We brought pizza to the staff at the CTICU to thank them. The notes says "Thank you for not just caring for Mason but for caring about Mason. With all our heart - the Lozanos"



We so miss all the wonderful nurses and Dr's in the TCICU. They are amazing and we are all blessed to have had them take care of Mason



At about 8PM you had 3 CC of mamas milk. You were feed through a tube but man did you look happy. You just looked at me like you had been waiting for this your whole life. Since you are only 15 days old and you have never eaten that is probably right.


Aunt Michelle came and met you. You two bonded right away. :)

I took the late shift since your mother was not feeling well. I got a call at about 3AM. Your Mom was in a lot of pain and went to the ER. She is back in the room sleeping hopefully. She has a kidney infection, probably brought on form the Foley during the C section.

So for today it is you and me boy. What more can a father ask for?

-Dad

Thursday, January 20, 2011

Long Night

I was by your bed side last night, and for the first time the thought of you not coming home has entered my mind. could you be too sick?



When I think what you have been through, I just cannot believe that. But the thought stills creeps into my mind. Here in the dark it is easy to let your thoughts wonder. I have seen kid after kid go home and we are still here. I am so happy for the families that are going home but every time another one goes home I ask why not you.



You are losing weight and still no feeding, the word is tomorrow and tomorrow never comes. At what point have we asked too much of your little body? When I look into your eyes I see a fighter, but I wonder if we have asked to much of you? Your Mom or I would gladly trade places. I could use to loose some weight.




I can see that you are over the testing and poking, all I can do to comfort you is caress your forehead and sing to you. I can only hope that it is comforting to you.



I am tyring so hard to stay upbeat and positive but I think today I have hit bottom. I know tomorrow will be a better day.



Aunt Tiff came by and gave your mother some needed distraction time. Lately the only time we smile is when we make our plans to take you home. We are making a list for that too. if you could only see the amount of stuff have have managed to get in our little room.



I wish I was stronger, our family needs me to be. In a way this experience is making me a better father and a stronger man. For that and so many other tings I thank you my son.



-Dad

Wednesday, January 19, 2011

Today has been a struggle

I want to post something happy but your struggling again.

A ridcoulsly cute picture that Auntie Tiff took of you.
You can see how small you are here compaired to the ducky



Today we tried to wean you from the vent and you didn't last a whole 20 minuets and it was so hard on you. We are really starting to get worried about your respiratory status.

Your hemoglobin and hematocrit (blood levels) are low and we can't figure out why so your getting another blood transfusion.

You've lost weight.

Your restless and unhappy.

You suck on the pacifier but it no longer satisfies you. We think you finally getting hungry but we can't feed you while you remain on the breathing machine. Everyday they tell us tomorrow we they will feed you but it doesn't happen..

Your Dad and I are feeling so disheartened and we are overwhelmed with worry.

You are getting a picc line tomorrow (IV that can stay in long term) and they plan on giving you anesthesia and will have to re-intubate you. I'm strongly against putting back on the breathing machine for any other reason then respiratory failure but it's the policy of the hospital and there is not much I can do about it. You do really need the Picc line.

I've assisted in 100's of Picc lines and have NEVER need to sedate a patient so I thing it's ridiculous that they feel it's necessary. If you get intubated and can't get back off we will be set back days. I will not be happy and have told the Dr's this.

It's so hard to watch you. Your sick of all of it. The pokes, the test, lying there day after day. This is so hard.

I'm hoping in a day or two we will have made progress and today will be long behind us.


The first pic Auntie T took of me I had a big fake smile so she made me laugh and took another one


Auntie T kept rubbing your head with the ducky and you would get upset when she stopped

Tuesday, January 18, 2011

Blessed with friendship and an update

The other George and I came back home to the RM house to find an amazing care package from a great group of friends that we have been blessed to have in our lives. All sorts of goodies to keep us going and I love that even though they are mostly George's friends even they know about my Diet Coke addiction. :)



They even brought toys for Pierce to play with when he comes and visits us



I took one look at this and knew instantly it was made by Alison. She's one of the most creative women I have ever met
It says...
Baby Mason Snack Mix
Sunflower seed - for Mason's future and all the growing he will do
Pretzels Squares - for all the charts that are tracking Mason's progress
Teddy Grahams - for Pierce and all the toys he will share with Mason
Hard Candy - the road may be hard, the remember, there's a sweet reward
Stars Cereal - for the sparkly spots in the sky that help make our wishes come true
Candy Hearts - for strength in healing Mason's heart
Jelly Beans - for "Jelly" our little nugget of sweetness

Isn't that amazing and so sweet! Of course I teared up when reading it. We love it so much I don't know if we can bring ourselves to eat it.


And then Karissa, another one of the amazing IE women, brought us a snack bag full of all kinds of goodies including apples! Yummy! Karissa your goodies got George though the long night were Mason got re-intubated and he didn't want to leave the bedside.

The bag is empty because George ate most of it before I got the picture :)

Thank you all for your kindness and love. George and I appreciate it so much!

***Update****

Yesterday was a long and frustrating day. We were told the the Geneticist was coming to talk to us. We were there all day waiting. Every time our nurse called to see when the Dr was coming we were told he was on his way and would be there in minuets.

We ended up waiting from 11 am till 6:30 pm till we finally gave up and left to get dinner. Not 5 minuets after we left the Dr showed up and of course my phone was off so we didn't get the call right away and didn't back in time. The Dr said he would be back today at 10 am for our meeting.

So we were there waiting till 11:30 when the genetic intern finally showed up. He asked us tons of genetic related questions but couldn't really answer any of ours.

Today the Dr's are slowly weaning you off the "push" of air that you are getting from the ventilator. You usually get a little agitated when they make a change but once you get used to it you calm down. You still have a ton of secretions and we are not sure why but hope it's something we can get under control soon.

As soon as we can wean you off the "push" of air we can start trying to feed you. It's so hard to believe your almost 13 days old an have never had anything to eat!

Monday, January 17, 2011

One week ago today

You looked like this....



Today you look like this...

We've come a long way baby!

There have been a few setbacks, a few unexpected turns, but we are moving forward everyday. Getting so much closer to bringing you home.

Your Dad and I have always made list. List that take us from the beginning to the end of what ever it is that we are working on. Sometimes it's a written list, sometimes we only keep track in our heads, but it's something we do a lot.

The house, our wedding, parties, babies, everything.

When your Dad and I were talking the other day we realized that we were doing that with you and your hospital stay.

Survive birth

Get you stabilized for surgery

Survive surgery

Survive the first 24 hours

Survive the first 48

and on and on till we get you well. We get you home.

So we deiced to make it an official list that we keep here on your blog. That we will cross off as you/we complete each goal. As soon as I get time I'm going to change the blog to 3 columns and keep the list on one side were we, and everyone who has come to know you and love you, can see what progress we have made.

The list will start off small and we will add new things as we discover where this road is taking us.

The thing your Dad and I couldn't figure out was where to end the list. Where would the finish line be?

Then I read a comment over on Kirsten's blog Couponing to Disney where the poster MM said "She hopes Mason gets to Disney world in another two years or so".

We thought how perfect!

Since in a way this all started with a trip to Disney world that we couldn't take we could end it when we do finally get you well and to Disney world as we had planned.

So there we have it. The beginning and the end of the list to get you well, and home, and eventually to Disney World where we will celebrate you, and your recovery, and baby Andrew and then we will have a perfect place to end this blog.

We will call your list Mason's Milestones.

Happy one week birthday Love.


Here's to many, many, many more!

The list for Mason's Milestones so far

Survive birth
Get you stabilized for surgery
Survive surgery
Survive the first 24 hours
Survive the first 48
Close chest wound
Get you extubated
Get chest tubes out
Get you off oxygen
Get you eating
Get moved to the 6th floor
Get you home
Get your palate fixed
Your coming home party
Disneyland (not DW)
1st re-birthday
Trip to Disneyworld

You are our happy story......

I was thinking back about some of my post and and realized there is something missing.

Things I need to say.

Then I read a comment this morning (btw I do read all the comments and appreciate them very much. There are several that I am planning on addressing as soon as I get a chance too) that clarified what I hadn't said.

I've told you about your illness, about our fears. I've described in detail your surgery, and our daily battles to get you well and home.

What I haven't told you is how much I love you.

How just the sight of you heals all my wounds, sooths all my aches.

How your little sounds, and your smell, are addicting to me and put me in a such place of peace and comfort.

Just being near you and my fatigue fades away and worries ease.

I wish I was better with words so I could truly express to you how deep and unconditional my love is.

Your father and I hoped, dreamed, wished, and yes even in our own way prayed for you over 18 long months of infertility.

We would talk of our Jelly and how much we needed you to complete us and how you were the missing piece of our family long before we knew you were you.

You baby boy. You are our dream come true. You are our wish fulfilled.

You, exactly the way you are, you are our miracle.

Your brother is our gift and you are our miracle.

You are a happy story.

You are our happy story.

and I wanted to make sure I told you that.



A little video of you really awake last night. I always forget that it will record what I say so sorry about that. What sounds like you breathing hard is actually the "push" of air that is helping to keep your lungs expanded. The sound of the baby in the background is one of our roommates.

video

Thank you for your comment Vback. Your so right.

Mason is a happy story. :)

Sunday, January 16, 2011

Some time with the devil...and it's extubation day again!

Your Dad figured out how to get us WiFi in our room so I spent some time with the devil last night (aka Google) doing a little re-search and reading about things that may, or may not, affect you in the future.


None if it was particularly helpful, but it's a bit like crack, one hit and your hooked and no matter how you tell yourself to stop you keep clicking the next link.

At one point your Dad asked me if there are any happy stories out there? There are but I just wasn't finding them last night.

I seem to have falling into a dark place and I can't find a way to get out of it right now.

So now after hours of crying last night I have a killer headache. I'm mad at myself for staying up so late, or if I was going to stay up so late why didn't I go sit with you?

I finally got myself to get up and get in the shower (Dad was at your bedside taking his shift) and after more tears I figured out why I was feeling the way I was. I remember it from December. It's because we're back in the unknown.

Dealing with the known something like your surgery, while hard, is much easier than dealing with the unknown. With your surgery there were Dr's explaining what was wrong, what they would do to fix it, what the odds of death were, etc. There was someone there explaining, and outlining the details. Eliminating the unknown as much as possible.
There's no one there to outline what the future holds. Eliminating any of the 1000's of possibilities. For now they can't even give us a why.

I hate being this way. Making Dad worry about me. He has enough to worry about with you. I get back to "normal" soon. I think I just need to be sad for a while.


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

Today was uneventful till around 3 where they were ready to try extubate you again. We were lucky to have Jose the respiratory therapist here and he suggested using a different kind of non-invasive oxygen treatment that gives you an extra push of air that helps keep your lungs open they usually only use in NICU and it's working!

Your breathing is so much better. You still need a lot of suctioning but your not struggling at all and I do believe ((FINGERS CROSSED)) that your going to stay off the breathing machine this time.

If you keep doing well we might even try feeding you tomorrow.

The Dr's did discover that you have a very small cleft in your palette. I didn't believe him as I had checked your palette a few times myself but you do. It's about the size of a pea and very far back so that (and the fact that you've been intubated) explains why it was missed.

While it's not something we wanted to hear it could be a lot worse than it is. Now we just have to find out how this will affect you and how it will be fixed.


You and Dad bonded watching football



I got to hold you twice today!


Look Ma no tubes part 3!


Juliet your nurse who has the most amazing reassuring and calm demeanor. Somehow she managed to take care of you and Dad and I all at the same time. She was your nurse on surgery day and the day after. I don't thing we could have survived the day without her. Today was the last day before she leaves for maternity leave. I'm thrilled for her but we are going to miss her very much.