Desperation.

Since I haven't posted in a while I thought I would catch everyone up.


Eva was discharged from the hospital, it was a long awaited day and it felt amazing. To have her in our home, to be able to lay in bed with our daughter. Hold her, kiss her, and just feel her there. It felt amazing. But yet AGAIN it was short lived. She just about a week after being home had to get life flighted back to Pittsburgh, Pa. I felt numb, I really couldn't get upset, break down. It seemed so familiar- that it almost didn't feel real. Like I had done this so many times- so I did as I have always done. Front seat on the shopper- escort Eva to the NICU. (Yes the NICU still takes her, think she has reserved a room until she is one)- Say hello to our favorite nurses- show her off to the doctors. See how big she is, IN JUST A WEEK?!?


The doctor's laugh but they wonder why, why is she back? They have exhausted all they can on her. And she is back?


But luckily this time, it was pneumonia. Fixable. Scary. But fixable. So 4 days in the NICU and we head home again. This time the excitement isn't there, I'm waiting for the next chopper ride home. Home being the NICU.
However, much to our surprise; Eva has behaved. A ER visit but nothing to bad! Being a mom finally starts to sink in, I get to wake up to her smiling face, fall asleep with her being the last kisses I got.

Now, once things finally seem to be ok, they are the furthest they have been in years.

A normal blood work up, just routine revels.. a problem in her normal white blood cells.

Why would God let her fight through 7 months of pure hell, and pain just to give her this? It’s not fair! The doctor’s say they will double check—which is hell as well. I hate seeing Eva poked, stabbed, cut, cry. When she has never hurt anyone, she didn’t deserve this. Why can’t I take her place, I’d be happy to take her place. Just to give her one day, ONE DAY; as a baby. A BABY! Not a suffering, soul. I think about all the holes, stiches, bruises, scars, pain she lives with each day. I hope to God, he will bless me with half the strength she has.

So again, here we lye in desperation. Begging, pleading, PLEASE let our baby be. She has never lived one day not struggling to breath, fighting to survive, she won’t get to hear herself sing, she’ll never get rid of the cut in her throat. She may never get to dance, or ride a bike.

As a mother how do you look at your daughter, knowing that she hurts and struggles everyday? When she smiles, you can see so much love and happiness. But you can see the pain and suffering in her face. A face that is begging you- please help me. And there is nothing you can do. You try your best, and love her like no other. But for a cure- you’re desperate.

Slacking.

I know i have been slacking with the new blog but onces thinsg calm down I am going to get this in order!

<3 xoxo

Another Day...

Today Eva went through her usual scope. They take her to the OR and basically shove a big camera with claws down to her air way and biopsy some of her tissue, and then go down to her lung and take some of that tissue.

Her air way still is not improving as it should SOOO ... the doctors have decided she will not jsut need airway reconstruction she will need extensive airway reconstruction... now what the difference is I don't know yet. But the word "extensive" just seems to say it all. More pain, more time, more more everything.

Well once we know what this entales ill let you know !

Damages.

Brain damage.
How do you swollow that word when the doctors are saying that word bout your 6 month old daughter. A little girl who has faught so hard to live, so hard just to be able to breath. And now God throughs this at us? When will she ever get a break? I want to badly to take all of her pain from her. So the team of doctors sit me down, all alone sitting there holding my daughter and break the news. How do you handle that? I know she is developmentally behind, she is a special girl. But how can you can she has brain damage? She laughs, she smiles, and she is perfect. There is no damage there! You tell the doctors thank you, but really you want to just punch them. Stop them from saying these things about your little girl. But you take a deep breath and smile.
So i leave the hospial.. knwoing that i have every right to cry, every right to be angry. But im not.... the day doesnt change.. It is on my mind but I have so much to do.. I don't have time to be upset. Trach change-- i get to put an artificial air way in the HOLE in my daughters neck. Then Trach tie changes-- i get to watch my duaghter in pain trying to cry but she cant. I have to pin her down... yeah ... i have no time to be upset.
But i get in the car and drive home to our house, and the drive lets my mind wonder.
What does this mean for Eva? I see and hear of all these stories of babies born preemie like her... at home healty playing and loving life. I am so happy for those babies.. they give us strength but when will that be our turn? God knows I will stand her in this NICU everyday for the rest of my life if i need too but I want her to be happy. To enjoy this life that she has faught so hard to have. Im envious of the families who have healthy babies... I would NEVER trade her for anything but i want her to be home with us, where she belongs
Damages?No doctor knows what will become of this brain damage. But I do knwo that God woudlnt consider it brain damage-- just brain challenges

Like my dear friend Robyn said " She is perfect even if it isn't the typical perfect that everyone thinks of and I know how much you know that too. Your love and support and strength is running strong through sweet Evi...e. Take a deep breath and then look and hold your perfect angel. To think of all the positive energy that she has help create throughout the universe already."

perfection comes in so many shades. She is just a right shade of perfection <3

Lunch Break--

Today brings a number of emotions to the table. Eva is doing well after the trach surgery but is now having other issues. She went yesterday for a scope, airway dilatation, and a biopsy of her lungs. We expected to hear that her airway was looking better that the trach was doing its job, and allowing the air way to heal. That was not the case- her airway looked the same  -if not worse than the last time. This raises a few questions; what is causing this? After the trach we only have ONE option left. So i wounder, have i done everything I could, or should I be searching for more options. 3 hospitals- over 30 doctors later we still have little answers. The next option is a "Nissin- G Tube" procedure while this is a very common procedure anytime you put a micro preemie with lung disease, heart conditions, and allergic to certain anesthetics it becomes a major surgery. This procedure is where the doctors cut into her esophagus and wrap stomach tissue around her sphincter (sure i spelled that wrong) and then place a feeding tube in her stomach and it goes out of her body so food can be placed in via continuois pump.

So as i sit here in this cafeteria... alone eatting my chicken sandwhich. I have a million things running through my mind. And all i can think about is this family sitting across the room. A woman with a husband and 3 girls-- all running around. The one little one asks is she can haev an ice cream, the mom meanly snaps NO!  All i can focus on is the look on the little girls face. This look of disappointment, sadness and anger. All over an ice cream. The mom is eatting an ice cream herself-- how cruel i think. I wounder what feeling Eva has toward me. Does she look at this world and wounder why this has to happen to her, or does she look at this world ready to over come even more. As i make my way back up to her room, i look at her, and all i see is the little girl in the cafeteria.

At that is where i am at now, looking with woundering thoughts all about me... Lunch break is over-- back to the here and now.

SURPRISE!!

Well tuesday was a normal day until lunch time. Lunch time came, I and ran to walmart. Figured nothing was going to happen she had just had surgery monday & was OK-- not super great but nothing out of the norm. I first get a call while in the car, from her nurse. Stating that her stryder (the noices made when she breaths) are getting worse, so they start steriods. About 10 minutes later as I am parking at walmart I get a call from the nurse practioner, and she says the same thing but they are also going to up her helliox. It is a combination of hellium and oxygen. Hellium can travel threw smaller areas than oxygen, so it makes it eaiser to breath. I agree, and head into walmart. The phone rings again-- it is again the hospital. I answer, and this time it is her doctor, and she doesn't sound pleased. She just kinda sighs and says "Mama, your not going anywhere."  My heart drops. She explains that Eva's air way is not safe, and is severly constricted and partially collasped. And then she says the word-- Trach-- tears roll down my face.. I try not to but a trach? We had never expected that-- she has been off of breathing support for almost 2 months! But I agree, knowing that it will help her! I gather my thought's and my items, and check out.


Headed back to the hospital, in tears I have to pull over. I am sitting there on the side of the road just crying and begging God. But then it hits me, after all we have been threw this trach? It's a peice of cake! I get back to be with her and she is breathign so hard, she is miserable! I ASK them to intubate her-  and they agree.


The rest of that day and night was a blur.. Couldn't sleep much so I was up pestering the nurses and doctor's at 6 am. Around 11 it's that time. Surgery time, we try not to be to emotional but ... Oh it is just so hard!  But they start to wheel her away, this tiny baby in this huge crib--I look down the hall to 3 doctor's wheeling away my entire world. My heart drops and stays there for the entire 2 hours.


FINALLY!!! She is out of surgery! Oh the trach looks so horrid- my heart breaks for her! Will she be upset with me for agreeing to this, will she understand how hard it was to do. Will she know that I only wanted what was best for her? Oh how I hope so...


So there it is-- she has a trach. And is beautiful!

Eva at a week old.

This was one of the first times we were able to touch Eva. The first week we could not even stick a hand in there. Her skin so fragile, if we touched it would rip. She was on an occilator. It vibrated her entire body, she was so fragile it looked like it was just shaking an egg, with the yolk just giggling. It was so scarey but the ventilator was just too tough.