Monday, April 26, 2010

Leave The Bumper Sticker on The Car

I believe there is a bit of technology behind faith, years of study, training, surgeries that failed, trails of heartache, and tears.
Ultimately I know the hundreds of people praying.... Good Christians pouring their hearts out to God on behalf of Asher is why he blows raspberries like a pro today.

I watched Asher struggle, and fight, my heart hurt, and the tears would flow.
There would always be one person who either didn't care enough to actually think about the words coming out of their mouth, or didn't know how to show they cared.
It was inevitable someone would say..."you gotta have ENOUGH faith,,, if you believe ENOUGH God will heal he will, or pray hard ENOUGH."
These words at first glance are harmless, but if you really think about them, they bite.
It was as if I didn't pray hard enough, or have enough faith that my baby would be born healthy, so God stuck it to me by giving me a baby with HLHS.
I always wanted to set people straight, but really didn't feel like investing the energy into educating the thoughtless, or ignorant comments.

Months before I delivered Asher I actually had a lady tell me God wouldnt answer prayers to save my son because of my beliefs on heaven!
She said my beliefs were wrong, so God considered me a sinner, and would punish me by punishing my son??!! REALLY? It amazed me she actually thinks God has time for all that catty nonsense in the first place. Like I am some huge blob on his radar, and as soon as I screw up my little baby gets it!

Although it takes MASSIVE amounts of faith, and prayer to survive what my husband and I went through it also takes a walk with reality.
The reality is our son needed surgery ( surgeries). We couldn't just deliver him into this world, take him home, pray super hard, and if God answered we were high on the faith meter, and if he didnt we just didn't pray hard enough, and better luck next time.
God isn't the great big wish maker in the sky!
Our son's heart was, and is damaged.
I know several moms who have lost their babies to this horrible heart defect, babies very young, babies 5mnths old, babies 5years old.
You would be a fool to think these women didn't pray, and didn't have faith God would heal there children.
Yet they dont have their children on earth, Why?

Without getting into a huge theological debate, because that is definitely not what this blog is about.. I have to say this... the world is flawed just like Asher's heart, it is imperfect, people are damaged, it rains on both the good, and the evil.
These are good women that have suffered great loss, and we don't know why... but we know that those babies are in heaven, and wont have to endure another surgery, or complications that can arise from surgery,, and one day we can ask God, why?

I inwardly cringe when people say " Asher is alive because he is so strong",,, although I know this is NEVER said out of harm, or out of ignorance,, my mind goes to the women that have lost a child,, and I wonder how this comment would make them feel.
As a mother who has lost a little perfectly healthy baby girl to complications during labor,,, and knowing she fought hard, and still went to heaven, it hurts to think she wasnt "strong" enough.
Her circumstances were awful, and she was without oxygen for so long,, God spared her pain, and took her home,, that was her plan.
Asher's next surgery could go as smooth as silk, or could be a complete disaster.
He could very easily have another stroke, there are a multitude of problems that can arise.
I feel safe knowing God has a plan for Asher whether it be in heaven, or on earth.
Do I want him to fight with all he has? Yes! Do I think he is strong?? You bet!
I also pray a prayer every night that hurts to pray,,, asking God to take him home if he is to suffer unspeakable pain, and not get better,, to spare my sweet boy extra hurt,, that prayer hurts.

The point of this entry is if you see someone that you care about struggling with grief especially over a sick child, loss of a child, or a loved one, think about what you say.
Don't say you know how they feel-even if you are going through the exact same form of struggle you don't know exactly how they feel,, you can relate, but we are not them, and their grief is their own, let them have it.
Let the person know you care, and are praying, tell them that God will never leave them.
I always knew someone really cared, and rather enjoyed it when they would skip talking all together, and would just give me a hug, and let me cry.
Sometime there is so much hurt, there is no room for words,,, that is the time to Leave the Bumper Sticker on the Car.

A Nerd Saved My World

Athletes save the weekends ( from boredom) and nerds save the world.

From the moment I found out I was pregnant I wanted a boy.
Not only did I want a boy I just KNEW I was having a boy.

Every since I can remember sports have been a major part of my life.
My Dad is a jock, and grew up playing football. When I was young he coached football, and wrestling for the local high school.
I think my dad probably would have liked having at least one boy, but he got three girls(: with me being the oldest.

Growing up I enjoyed being active, although coordination wasn't my friend. Tried out for softball in elementary school, could hit, run fast, but couldn't catch,, should rephrase that WOULD NOT CATCH the ball, would run, or duck down - very afraid of getting hit in the face.

My freshman year of high school I ran track, ran fast, and running fast was very easy it took no special coordination, or bravery, and kept my attention because the race would be over in a few seconds. Track was MY sport.
My husband grew up playing baseball, very good pitcher, and as an adult is a very, very good golfer.
We love sports, and we love watching sports together, football,, basketball, and when I have lost full control of the remote, golf. (:

You better believe when we found out we were having a boy his athletic future was mapped out!
Genetically this boy would be unstoppable ( like a little superman) tall, fast, and thanks to wallace coordinated.
I couldn't stop talking about the runs we would go on, baseball camp, golf lessons it was just so exciting!
Then came the news HLHS???? Missing left ventricle????
Wallace asked the question,,,, I already knew...
The Dr. explained no football, maybe baseball, but def wont play at any level higher then high school, if he made it to high school.
It became obvious really fast that sports were the last thing this Dr. was thinking about, and really living was going to be the real challenge for our son.
Months later sports were the last thing on our mind, and making it to tomorrow was all that mattered.

The day after Asher's first open heart surgery ( norwood stage ) he went into cardiac arrest, his heart stopped.
Wallace, and I were bedside, cheerful that he had made it through the night with no issues, the first night after surgery is the test,,, bad stuff usually happens during that time, meds adjusted the body gets used to its new circulation.
The code happened fast alarms went off the nurse moved fast, the DR. happened to be in the hall, and came running.
I backed away from the isolette,, trying to make room there were so many people running in, and moving like lightening.
My eyes locked on my son,,, Asher for a moment opened his eyes,,, I saw fear, and panic, it was a look I will never in my life forget.
I screamed, and ran,, ran fast down the hall. I screamed out of hurt, and ran because I didn't want my emotion to disrupt the Dr. he needed to concentrate on saving Asher.
I thought Asher was going to die.
I sat crying,,, the left side of my body numb, couldn't breathe, couldn't do anything but look at wallace, my jaw clenched,,, we waited.
The nurse came to find us,, i fully expected to hear the worst.
Then she said, " he is ok, he just got a bit dry, and crashed." WOW!!
Then the Dr. came in,, he sat down and explained what happened.
As he talked he took his wire rimmed glasses off, and wiped them with his shirt, he was a bit out of breath, and his cheeks were pink.
He told us we could come see Asher, we followed him back to the room, and stood over Asher as he explained what was going on, and what they would be watching for in the next few hours.

Over the months we were at the hospital I got to know this Dr... in fact Wallace helped him out at a golf tournament ( apparently this Dr is not the best golfer (: )
He is however one of the smartest people I have ever known. He considers himself to be a nerd, and told me he has never been good at sports.
He told me he thinks Asher will be a nerd, maybe a doctor, and when he said this he seemed proud, like they were little comrades, and had this bond, like Asher could be part of his group.

I don't know what Asher will, or will not be physically capable of, but I know I will love and support him in whatever adventure he chooses, whether he chose to compete in chess, play for the NFL, or be a Dr. like the one that saved him that day.

That Dr is a total nerd, but he the amazing nerd that saved my world. He is, and will always be a hero to my family,, he is known at the hospital as the King of the Code, the one you want if your child is trying to die.. he is the man with the wire rimmed glasses, horrible golf game, and a memory like that i have never before seen,,he is the man that saved my son.

Friday, April 23, 2010

The Face of Fear

Fear= an emotion experienced in anticipation of some specific pain, or damage.

To say I have no fear of losing my son would be a lie.
When i read stories of children with the same diagnosis as Asher, and the child does not do well, my mind sneaks off to a dangerous place.
Like vapors of poison seeking a victim my fear begins to smother me, and panic ensues.

I become sick at the thought of not holding Asher again, seeing his crooked smile, or hearing his seagull shriek.
I wonder if I would, or will survive life is Asher passes away.
I worry that the pain of that event would be to much of a burden, and I will just give up on things that matter,, like my marriage, health, finances, GOD.

The fact is Asher is basically an example of a living dead, a little ghost baby ( i dont really believe in ghosts if you were wondering).
I feel confident in saying 20 years ago, even 10 years ago if Asher had been born he would have most certainly died, and here he just turned 9 months old.
That fact should make me feel better, but it doesnt.

Fighting fear is a daily battle for me.
Each morning I wake up, go into Asher's room, and breathe a sigh of relief as I lift him all warm and cuddly from his crib, so thankful we made it one more night.

Today I feel discouraged, and scared, uncertain of our future.
The only verse that has given me comfort, and a sense of calm is
Lamentations 2:19 "Pour your Heart like water before the face of the Lord. Lift your hands toward him for the life of your young children."

Thursday, April 22, 2010

The Hard Way

"Wouldn't it have been easier if you had terminated the pregnancy?"
These words came out of the mouth of a woman as she looked directly into the shiny, round, blue eyes of my son.
She had asked about his feeding tube, and i explained to her that he had a heart defect that made his appetite not what it should be, so the tube is how he eats.
Then she followed up with the doozy about wacking my son,, I said, " my life has never been easy, i don't do easy, and certainly wouldn't trade easy for my son".

If you know me then you know I do EVERYTHING the hardest way possible, not even on purpose , it just turns out that way.
I was born early weighing in at a little over 2 pounds and spent months in the NICU,, 30 years ago I wasn't expected to make it, and i did,, the hard way.

Math in elementary school,, a DISASTER always got to the solution everyone else did, it just took me 20 min longer, because i would make up a new way to get there that was unbelievable complicated.
Hiking-always took the longest hardest trails without even knowing it. (or took trails that required you to wear snow shoes,, and had no snow shoes,, melissa you were involved in that).
Losing about 60 pounds of pregnancy weight in record time because I slave away at the gym.
The list is long,,, always harder, not better, but harder.

Now my beautiful son Asher, the baby of my dreams without knowing it and through no fault of his own is following that trend.
He entered this world, and surgery after surgery finally made it home.
He uses his foot to hold his book, and his only good hand to turn pages.
He tries to crawl, and sometimes makes it but only if he drags his right arm.
He tries to sit up from a laying down position using only his left side.
He drinks from a bottle but never latches, just swirls his tongue around till formula comes out.

Asher and I have a lot in common.
We came into this world the hard way fighting to survive.
We learn and grow, the hard way, and most likely will both leave this earth the hard way.

I guess I should have speed dialed my mom, handed the lady my cell, and have her ask my mother..."wouldn't it have been easier if you had terminated the pregnancy?"

Tuesday, April 20, 2010

Car Seat ENVY

I dont think to many can understand how badly i wanted to use my car seat.

I had pondered at target over car seats, and stood in that section for what seemed like hours, it especially seemed like hours to my swollen over worked ankles.
Finally I picked it!!!
My choice was brave, and the car seat stayed in the box for a looooong time. The car seat was NOT in the car on the way to deliver Asher.

Over the weeks that turned into months I would watch patients come, go, and then come back again to visit the staff ,, always in a car seat.
I would see parents walking into the hospital with an empty car seat, and walking out with a baby cuddled up snug and safe-going home.
Every morning I would walk into the hospital-no car seat, at night walk out-no car seat.
My hand yearned to hold the handle of my beautiful car seat, with Asher safely strapped in.

The days ticked, and I grew more anxious for my turn... I wanted a tee shirt, that said I JUST HAD A BABY, BUT CANT KEEP HIM WITH ME!
It bothered me, I was fat, and for all anyone knew just needed to hit the gym-why??? NO CAR SEAT. I cried aloooot, for all anyone knew i was just an emotional lady-why?? NO CAR SEAT.
Unless someone knew me they had no idea I had a baby. I never carried my car seat with Asher in it, it was like I had no proof to show the world he was born, and I HATED THAT.

I started feeling sorry for myself, thinking I DESERVE THE FREAKIN CARSEAT!
I was pregnant for petes sake,,, i threw up for months, gained 55 pounds,got stretchmarks, stopped my running, slept all the time, was unable to work, gave myself lovenox shots ( well wallace actually enjoyed stabbing me daily (: lol), had a C-section.
I deserved it, Right???

Then one day, in a room close to Asher's the battle for life was lost, and a mom walked out the hospital doors for the last time with no car seat-no baby, and part of herself missing.
Her hands hung low, her eyes tired, her body weak, her daughter dead, no car seat.

My envy disappeared. I realized my day of taking Asher home in a car seat was still a possibility, there was still hope.
I needed to be patient to wait on God, to be thankful I hadn't been the one to make that last walk down the hall, but to have compassion, and pray for that woman that did, she never got to carry her car seat.

Sunday, April 18, 2010

Being Asher's Mom

As many know Asher has hlhs, a severe heart defect, it is the most complex. He is essentially missing the left side of his heart.
My husband, and I found out Feb 2009 when I was 5 mnths pregnant.
Our lives changed that day.

Being Asher's mom meant the night we found out crying myself to sleep, waking up in the next morning with a gut wrenching fear for the life inside me. A life that would face hardships, unbelievable pain, and fight for every minute on this earth.
That was the hardest part of being Asher's mom knowing as soon as he was born I could no longer protect him.

Being Asher's mom meant listening to the lady at the grocery checkout say "well at least it is healthy" Really? I never wanted to explain that i already knew he wasnt healthy-did i love him less? NO
Explaining his defect was usually worse then answering questions about his health, or lack of.
It was painful making the mistake of telling people about his defect, so they could say something stupid like " oh well my neighbor had a kid with a hole in his heart, and he is fine now". WOW-yeah because that trip to the Cath lab wasnt exactly life threatning now was it??? Didnt make me feel better, ever, just annoyed. I never told people,, so they could compare him to a child with basically the equivalent of a scraped knee.
Also would cringe at the bumper sticker reply "everything will be ok, just have faith"... really? how do you know?? I guess since everything will be ok we wont need open heart surgeries, the vent, or intensive care now would we?? Being Asher's mom meant the need to bite my tounge, and screem at the foolish comments inside, not outside.

Being Asher's mom meant feeling so alone, like the only pregnant woman going through grief, searching the internet and finding friends with children that had the same heart defect. It meant crying as I typed my story, and crying as i read their stories.

Being Asher's mom meant not getting to hold him when he was born, it meant watching the baby of my dreams struggle to breath.
It meant watching the nurses do things like change diapers, and bathe him, things I so desperately wanted to do, but knew he was to sick.
Being Asher's mom meant packing up and moving to the Ronald Mcdonald house, so I could be close to him, but never close enough

Being Asher's mom meant learning more about the human heart then a person who is NOT a doctor should know. I say doctor because I know more about the heart especially the hypoplastic heart then most new nurses.
Being Asher's mom meant learning what all the monitors in the intensive care unit meant, it meant learning to tell the difference between heart failure, and feeding issues.

Being Asher's mom meant signing consent, and handing him over for open heart surgery, again, and again,,, knowing I will have to do it again.
Being Asher's mom meant watching the Dr do CPR on him the day after surgery, and nearly passing out.
It meant watching him struggle for weeks with heart failure, and now answers why, it meant the possibility of a heart transplant, and still in the future that possibility looms.

Being Asher's mom meant never getting to dress him in his cute Newborn Clothes.
It meant learning to find my voice, and make sure he was taken care of protecting him at all costs, knowing him well enough to assess him, and know if he was in painor not, and at time demand meds.
It mean learning to find my voice, and utilize all of my communication skills to defend him, without alienating, and hurting those that took care of him.

Being Asher's mom meant sitting in the corner of his room day and night because there was to many machines and pumps to close to his crib.
Being asher's mom meant finally getting to take him home after 5.5 long months in the hospital.
It meant struggling to get his feeding pump to work, and his sat monitor just right. It meant for the first time getting to spend the night in a actual bed, right down the hall from my son.

Being Asher's mom has been and will continue to be a special journey.
It means never taking anything for granted. I cherish every smile, laugh, and cry.
Being Asher's mom means never giving up, always having faith, and knowing Gold loves him more then I do. It takes tenacity, and patience. It means doing to best I can to take care of him today, not worrying about the future,, if he will need a transplant, if he will make it thru round three,, taking care of him today, loving him today,, i dont know if i will have him tomorrow, or the next day, but i know he is here today.

Laundry LIst of Lessons Learned

Asher was in the intensive care unit from the day he was born July 16th 2009, to Dec 23, 2009.

We learned a lot during that time!

I personally learned that Asher does what he wants to do, when, and how he wants, and usually he does it slow.

I will go down a list of mishaps that occured while admited....

Day after norwood, first surgery, Asher went into Cardiac Arrest,, wallace and i were bedside, and witnessed how fast, and furious the staff at All Children's saved his life,, i trust those people, and always will.

Then days later Asher's chest tube was dislodged causing his lung to collapse,, he was put back on the vent.

Days later, Asher went into congestive heart failure, werent sure why, he went to cath lab, found he has a prety leaky tricuspid valve, and needed to stay on the IV drug milrinone till next surgery,, no one knew for sure, but we were all hoping the next surgery would take some work load off his heart, less blood volume in heart meant less leaking, meant no more milrinone, meant HOME.

Days later, Asher went into Respitory Arrest for no known reason,, he was put on the vent,,, he was later given a feeding tube.

In between this episode and the next we were moved to a private room, and besides a few blood clots everything was normal,,,minus the very loooooong painful, and sad process of weaning him off morphine,,, see asher wasnt allowed to cry,, asher was miserable due to lack of oxygen, and he just really like his morphine to take the edge off, so it was rough getting him off.

Months later, Asher got a fever, Asher began to struggle breathing,, asher had a situation that involved respitory support he had a clot in his PIC line that delivered meds it was located in his head,, the clot trapped bacteria, that caused him to become ill,, if we had not been in the hospital, he would not have made it,, i had time to get down the hall to get help, and that was with a nasal canula giving him 100% O2,, so God was good to keep us there.

Then because really he had no other access, and everyother day we were crossing our fingers that the IV team would get an IV in so he could get his heart saving med milrinone,,, they decided he should have his second surgery,, at first the schedule was looking at after christmas, then the dr.s surprised me with dec 5th!

It was better that they surprise me, truly i freak out, and if i had an entire month to stew would have probably ended up in the hospital next door (: jk.

The day came fast, everyone was a bit on edge,, the OR nurse held him, let him keep his clothes on, and take his bear with him,,, the nurses were ready, they all wanted to help,, they were attached to Asher, and we were all hoping this next surgery would be easy, but pretty sure deep down, we all knew it would be tough,,, little did we know how tough.

Asher had scar tissue, this caused a problem,,, after the actual repair was complete, he bled alot, they had to reopen him, and put him back on bypass.

After he came out of the O.R his oxygen was low, blood pressure high, all symptoms that happen after this surgery, also symptoms of a stroke.

The morning of Dec 7th 2009, I noticed asher wasnt making eye contact with me,, I told the nurse, she took notice,,,. I left to get a drink, she stood by Asher's crib,, she noticed a rythmic movement in his fingers and hand,,, she put her hand on him, he kept moving, she ran down the hall to get the Dr.,,, she took notice,,, she called to have cat scan.... our world changed forever.

Asher had a massive stroke, that involved his left frontal lobe, but that was causing massive swelling, and seizures..... wont go into detail, but will thank a few nurses, the Dr working the CVICU, and Dr. Jacobs,,, they fought to have nuero do surgery on a kid that really they didnt think would make it anyway, and they werent to eager to save.

So they took Asher back for a craniatomy,, this scared me bad,,, two major surgeries in such a short time,, i kissed his head, and cried.

My husband and I were prepared for all things cardiac,, we were in no way ready to even begin to understand that we may raise a baby/boy/man that may never function normally??? How did that happen? How were we alone in his room waiting to hear how his brain surgery turned out??? How were we going to wait the weeks it was going to take to find out how extensive his brain damage was,, we knew there was damage, but not what it had done to him.

I will never forget sitting with wallace in asher's room where his crib had just been,,, waiting, waiting,, i cried, and was so upset i just sat there and threw up,, over, and over, my heart was broken,,, i remember calling my parents and crying so hard, asking my dad why God did this? what plan was in this????

For days later Asher had seizures,, but he everyday would progress,,, i never left his side, and if I did we made sure either wallce, my mom, or wallace's parents sat with him, but that lil boy was never alone,,, I wanted him to know he would never be alone, and if he went to heaven we would be with him when he left this earth.

Each day he got a bit better, each day the nuero team would be surprised, they would huddle around the crib, and discuss, each day they would retract some of the debbie downer news they had said the day before,,, asher would react to pain, he would move his leg,,, nobody knew if he right side would ever move again, or if he would be able to turn his head again,... he does it all now!

Asher is a living Lesson, that God uses ordinary people to to extaordinary things, he used that special nurse a married middle age woman with kids, one of her kids is a hairstylist,, to save my son! He used Dr. Jacobs a man that was once a boy just like asher develop the desire to perform a surgery so complex most cant even grasp the general concept on a heart the size of a walnut!!!!

Asher taught me there is always hope,, as long as he is alive he will fight, and even if the day comes that God takes him home,, i still have the hope that I WILL SEE HIM AGAIN, we will never be completely seperated.

A nurse asked me once where i got my strength,,, i said from God,, and i meant that,,, but also I got my strength from my son,, he needed me, if not me then who?? Who would learn the anatomy needed to discuss his care with the doctors?? Who would learn to care from his feeding tube, and give meds? Who would learn how to look for blood clots, and practise phyical therapy??? God gave me a purpose, to be this best mom I can for Asher,, lesson learned.

The Begining of life with Survivorman

I found my Journal I was writing in during the begining of Asher's very long stay in the Intensive Care Unit

July 30,2009
Lil Asher-
Today I watched as the IV team dug around trying to find a way to put your IV in- your central line may clot.
The IV guy eventually put a line in your little bean head- you squirmed, and tried to cry, but you couldn't, because you are on a ventilator.
Yet again, as a mother, as your mother I feel helpless,, anyway son lets reverse this story to July16th.. Your Daddy and I woke up early, we had to be at the hospital by 10am. The hospital is far away so we got up early to pack, and get everything together. We were both really nervous, excited, but really really nervous.
I just wanted you to stay in my belly because I knew the journey ahead of you would be really hard, and wanted to spare you from any pain.
I had you by C-section and was really, really nervous something would go wrong, it felt like it took forever, finally they got you out,, and then it felt like it took forever for me to hear you cry-then i heard it, your cute, ANGRY cry, it was the happiest day of my life...( besides the day i married your daddy).
Your Daddy ran over as fast as he could to take pictures of you. There was a team of nurses, and dr. from all children's to help you,, they gave you IV's, and cleared your lungs, got you all prepped, and in your incubator, ready to wheel you thru the tunnel to All Children's.
They brought you over to me- i couldnt touch you, but they let me kiss your face, and your leg.
I got a quick glimpse, and then away you went, your daddy went with you, and watched them get you stable, and comfortable in the CVICU.
I had to stay in recovery at Bayfront, which took what seemed like forever. Once they put me in a room the Nurses dragged their feet about letting me go see you, which really upset me- i was desperate to hold you. Finally four hours later they let your dad wheel me down the tunnel, and over to All Children's CVICU, where you were.
By the time I got there you were having a very difficult time breathing, it was very fast, so they put a think called Cpap on your nose to help, they said they would try that before they put you on a ventilator.
I sat in my wheel chair staring at how beautiful you were, and touching you-I wanted to hold you so bad, but couldnt, because of the breathing device. I was more then just a little upset the nurses at Bayfront made me wait, if they had let me go down to see you when i had wanted to, I could have held you.
I remember being so amazed at how beautiful you were-absolutely the cutest baby in the whole world.
Already I could tell you had amazing spunk, and personality.

Your daddy wheeled me back to my room- we had a few visitors-your nanas were there,, your nana that lives far away was there.
An hour or so after I got back to my room the CVICU called and told me that you had been put on a ventilator. I remember being very upset, crying very hard. I was very sad, and very worried for you. Your Grammy from Wa state stayed by your side all night watching over you,, since i was not physically able to.

The next morning I went to see you, it was very hard for me to see you on the ventilator, but they assured me you needed it, it seemed being born was very upsetting to you, and it took a little while for you to get used to being out of my tummy.
Also the stress you were under caused your White Blood Cell count to rise, causing them to think you may have an infection, however we found it was soley due to stress.

A couple days passed, and they took you off the ventilator, you were like a rockstar!! You only need two little prongs in your nose to give you oxygen.
I was still unable to hold you, because you had a ton of wires in your belly button.

I was able to change your DIAPER!!! Once while changing a pee diaper, you pooped on my hand (: It was really one of the cutest things I have ever seen,, also when they changed your bedding nurse Christine let me pick you up,, or sometimes when they weighed you, i would pick you up, but never hold you.
Your daddy changed your diaper once, it was awesome to watch him smear diaper cream on your sore little bum.

What was sad, is you were so unlucky, you had a bum heart, and you were allergic to tape, and you were having a horrible diaper rash): I felt so bad for you my heart nearly broke. I prayed for you almost as much as every breath I took, somtimes i would just cry, and pray, it would never stop, you were always on my mind, and you took such control of my heart.

I poured out my heart to God literally begging him to let me keep you, and to spare you as much pain as possible, you are such a unique baby, and so sweet.,, all the nurses here in the CVICU love you.
Your nurse cut the hospital tape in the shape of footballs to keep the oxygen prongs in, because you keep ripping them out. He thought you were going to be a football player because your hands and feet were so big!!! They let me give you a bottle twice, and you loved it! Milk ran down your neck, and it was so cute to finally be able to watch you eat! Sadly the next day they made you stop because eating was taking a lot of energy you needed from your lungs, and moving it to your tummy,so you could digest the food, and your lungs needed the energy more.
I got to hold you about a week after you were born! It was the best feeling ever! You fussed a little, but calmed down when I gave you your bink- just for the record before surgery your bink was one of your favorite things, since as a write this you are not out of surgery i have no idea if you will like it again or not, but before surgery you were in love with your bink.
You actually were able to hold your own binky even at such a young age, we have a picture, it is remarkable how great your hand eye coordination is!
You were able to fight off any nurse, you would push their hands away, and wiggle, it was uplifting to see you so determined, and to know you were so strong.

Your surgery is scheduled for Monday July 27th 2009,,, as we get closer to the day of your surgery I become more, and more nervous. I have been waking up crying, so scared because your surgery will be difficult, and I just cant bare to lose you.
This is a nightmare, sadly a nightmare that turned real.
The morning before your surgery I cried really hard, just stood over your incubator and cried. It hurt me to know you would have to go through such a painful surgery. Even thought people tell me you wont remember the surgery, it still bothered me because you reacted so much, and were so alert.
Your surgery was scheduled for 7am we arrived at the hospital at 5am, the nurse let me hold you, it was hard to hold you, because i was crying so hard, so it was difficult,, the crying made my nose run, and i didnt want to get anything on you, luckily your daddy brought me a tissue.
I held you for a while, we took pictures, then your daddy held you for a while, and we took pictures, as i write i am hoping we got some on the camera, i know we got some on daddy's phone.
Then I held you again as the O.R nurses came to get you, they put you back in your incubator, and started wheeling you to the operating room,,, i followed them, and watched them wheel you down the hallway.
I cried really hard and prayed, and prayed.
The thought of the actual surgery made me cry/ knowing they would be cutting into your sweet little body was breaking my heart.
From the moment I found out i was pregnant with you, i loved you, and everyday my love for you grew. The thought of losing you, and knowing that i have a 7/10 chance of losing you was truly devastating.
They told us the surgery may take up to 7.5 hours, the nurse called us 1.5 hours through to tell us that you had made it on the heart and lung machine, and you were doing ok. Then they called and the O.R nurse told me that you were handling things well, and that Dr Jacobs was in the middle of the most extensive part of the repair which was when he put in your gortex shunt he also widened you Aorta. We waited for hours, which felt like days.
Then I got another phone call,, i was actually in the back of the waiting room fixing myself some coffee when they called ,, I answered they said surgery was over,, i felt my heart fill with joy. Then they said they were going to keep you in the operating room to make sure you were ok. They also said they were thinking about putting you on ECMO which basically was like bypass, this really scared me, and i began to cry really hard.
Your daddy took me out of the waiting room I was crying so hard,, it scared me to think of you needing that machine,,, although the nurse assured me " you were holding your own." Knowing you were fighting made me want to fight more to remain calm, and have faith God woud let me keep you. I was so fearful of losing you, but deep down I knew God has a great purpose for your life.

This was written by me while sitting by Asher's incubator a few days after his norwood surgery, not proof read just what was in my journal thought it might be a neat look into the begining of our road