Friday, July 22, 2011

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 !

Friday, July 15, 2011


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

Friday, July 1, 2011

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.