Monday, September 26, 2011


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.

Wednesday, August 3, 2011


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

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.

Friday, June 24, 2011


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.

Thursday, June 23, 2011

Here is Eva's story untl now!

For most woman pregnancy is a time of happiness and excitement, but for some it can turn into many other things. I found out I was pregnant at just 5 weeks along. I went to the doctor for what I was sure was a urinary tract infection. My doctor did some urine tests and came in with a huge smile on his face and said "Your pregnant! Congratulations!"  I was so happy, I immediately told my boyfriend, who was also very excited. I set up my very first OBGYN appointment. It was in 2 weeks and I could hardly wait. However, I did not make through those 2 weeks. I started bleeding and was rushed to the emergency room.  The ER doctor says it was a threatened miscarriage. I was still so early along that this was not uncommon. From 6 weeks pregnant to 20 weeks pregnant, I was on bed rest with frequent trips to the ER for bleeding and threatened miscarriages. At my 20 week check up, my doctor was confident I had surpassed the miscarriage time frame and took me off of bed rest, but does caution me to be careful! I am very careful, as careful as I can be. Not carrying anything over 5 pounds, not running, not bouncing. I was eating healthy and drinking plenty of water.

Thursday, January 27th, 2011 comes and it was time to get our 3D gender scan. My now husband and I got up early and went to the doctor's office. Our sonogram tech says "IT'S A GIRL!" We were told that the fluid levels were great! Everything looked great! My doctor confirmed all of this, and sent us on our way. We were instructed to come back in a week for gestational diabetes testing. That day had seemed so perfect. We had planned on going out to dinner to celebrate, but around 2 pm that ecstatic feeling went away. My back was hurting, giving me sharp pains and i had lost my appetite. My husbands made noodles for dinner instead. I took 2 bites and decide to head to bed. He wanted me to go to the hospital but I insisted that it was nothing. After all, we were already on a first name basis with all of our local hospitals. He goes to sleep and I stay up, I can't sleep. The pain had moved to my stomach and hurt worse than I had yet to feel. I took a hot shower thinking that it would help. By 11 pm I was begging my husband to take me to the hospital. We got in the car, with nothing packed. Assuming they were going to tell us again that it is just braxton hicks contractions. I called my doctor's on call number. They tell us which hospital she is at. The hospital she was at that night was an extra 25 minutes away. We couldn't  wait that long! We end up going to the closest hospital.

Arriving at the hospital, I was able to walk to the admissions desk. I insist I don't need a wheel chair but the nurse says its protocol so I got in for the ride. They took me up to the labor and delivery floor. I was 24 weeks, 3 days along in my pregnancy. My nurses hooked me up to see if I was having contractions.  I was, but they were not measuring very high on their charts. The nurse was in no hurry to get the doctor. She went through all of my medical history, past present and family. Then she said "Okay, Lets check you out." Her face changed immediately, she gave me a smile. One of those smiles people who pity you give. My husband and I looked at each other and knew something was wrong. We knew our daughter was alive, her heart beat was a strong 148 bpm.

She came back with a another nurse who checked me out and gave me that same look. The first nurses gave us the worst news. I was 3 cm dilated, my water sak was bulging. They gave me medication to try to delay labor, but the contractions continue and were getting closer together. A man walked in, as if he just rolled out of bed and introduces himself. He was my doctor. He checked me out, and sat next to me to break the news. I am was labor, with a 24 week premie. He explained how they do not have the doctors or equipment to stabilize a baby so premature. He began to talk about the procedure to remove the fetus and that he could care for me. My husband stops him, crying, begging the doctor not to give up on our daughter. She was not a fetus she was a baby, OUR baby. The doctor explained there is a blizzard outside. Trying to get a medivac here was nearly impossible and he was not confident that I would make a 2 hour ambulance ride without delivering. He did not want either of us in an ambulance when the baby decides to come, but he agreed to try. It was about 2:30 am, He explained that an ambulance from a WVU Hospital had agreed to come and get me. He wanted us to go to Pittsburgh, PA Children's hospital but it was a longer journey by ambulance so Morgantown, WV here we come! It was snowing very heavily! It takes about 1 hour and 45 minutes to get to the hospital. In that last 5 minutes my water broke. There was not much time left! The nurse riding with me informed the driver we needed to be there NOW! My husband drove behind us and arrived right after the ambulance. I was taken up to the delivery floor. Another doctor came in, a woman, introduced herself. She would be delivering my daughter. She examined me and told the nurses I needed to be in the operating room right then!  My husband was following behind, struggling to get the scrubs on.

She didn't even have time to mentally prepare me for what was about to happen. She just told me on my next contraction to push. So i pushed! Within 6 pushes out came this tiny baby. No crying, no movement, nothing. There it was, the birth of my daughter. Eva-Ann Rose, born January 28th, 2011. She was 11 inches long and just over a pound. I noticed soon after, how many people were in the operating room with me. At least 15 people, all amazed at the size of the baby. As they took me back into the labor and delivery room they let my husband get a sneak peek. She was wrapped in ling wrap, along with at least 20 people crammed into a room as big as a public restroom. The doctor explained the odds are not looking good and asked my husband to leave. Now the real journey begins.

After an hour a doctor came in, shaking his head. Our hearts dropped. She had to be resesitated 3 times but was stabilizing. He told us not to expect her to live past 8 hours, that adrenaline runs in there bodies in the beginning. He then began a speech that I will never forget. He said "There may come a time where we have to make a decision of if we are doing things FOR her or TO her.  To let her go or keep her alive by machines." He explained how they perform a test on these babies to determine her gestational age. She was not 24 weeks, according to their test she was only 22 weeks. He explained that babies surviving at this age is so rare. We just wanted to see our baby, to see the life we created and loved so much. We waited 4 hours and after pestering the nurses they finally had the OK to take us back. She was in a clear box, a ton of machines hooked to her, and she was smaller than my hand. We couldn't  touch her, her skin would rip and cause her pain. I would never want to hurt her but I wanted to touch her so badly. If I was going to have to say goodbye to my angel, I at least wanted her to feel loved!

I can't give a day to day description of what happened. Days blurred together and I shut myself off from the world. All that mattered was Eva. She didn't move, she did not do anything. The initial breathing machine they put her on was too hard on her lungs. They put her on the ossolator and it vibrated her tiny body. It looked so painful. Each day brought worse news, but February 10th, 2011 was a day I will always remember. I placed her hand on my pinky finger, just set it there so it would not rip her skin. That day she squeezed my finger, just for a second and not very hard, but she squeezed my finger. I knew at that moment she was going to be ok, against all odds. That same day also brought terrible news. Eva had a worsening grade 3 bilateral brain bleed. We got the speech again of how we need to chose if we are doing things for her or to her.

After that, days became even more of a blur. Rounds at 8 am, watching Eva until 1pm for lunch, back up to watch Eva until dinner at 6pm, then over to Eva until 10pm. I would try to sleep after that, but I would find myself at her bedside at 3 am begging God to save her, to let my baby live. We wanted her even with any possible challenges she had. Blind, deaf, mentally challenged, disable in any way. We loved her the way she was given to us.

Eva hit a month old and was put back on the ventilator. Things were looking up, not good, but up. Then we got told she some how contracted MRSA. A strain of the staph infection that was resistant to typical medications. They moved her into an isolation room. Along with the bad news they throw in some good news! We can hold our daughter for the very first time. It was an epic failure. Her heart dropped, her oxygen saturations dropped to 4! It is targeted at 100, and hers was 4. Was I pushing her to hard? Was my desire to hold her compromising my judgment? I felt that if she could feel skin, warmth and love it would help her fight. And it did. She stabilized after a few minutes and did fantastic the rest of the time. I cried, holding a baby less than 2 pounds in my arms. Knowing that this baby, light as a feather, was fighting to live harder than any adult I have ever known. I knew that my daughter, my baby was fighting to prove everyone wrong. She knew God had a plan for her and that she was going to show the world that big miracles DO come in small sizes.

The next 3 months went by rather fast. She continued to move upward, hitting 2, 3, 4 pounds.  She developed her lungs and was able to come off of the ventilator. She then went on to the CPAP machine, then to the nasal canula. She began eating from a bottle and she was nearing that time. The time for the "H" word. HOME! Her eyes had been checked weekly for ROP. She had a level 3 but that was nothing that laser surgery couldn't correct. So they did her hearing screen. For this, her dad and I were both present. The opthamologist was shaking her head, Eva had failed. To pass a screening, a newborn must score 160 in each ear. Eva scored 12 in her right ear and 0 in her left ear. We were devastated, but we knew we would do whatever we could. Sign language, hearing aids, surgery, absolutely anything that could help her.

And the big day came, after 4 months of being in the NICU we were ready to take our baby girl home, on oxygen via the nasal canula, and a heart and respitory monitor. None the less, we were home bound! That day was the first day i felt like a mother. I felt like I was finally able to do what she needed from me. She had a list of conditions, but they didn't matter, my daughter was finally coming home. This excitement quickly faded. She went to visit her pediatricians office 2 days after discharge and had lost 12 ounces in 2 days! This was and is a huge amount! Her head circumference had grown 2 centimeters in a week, this is also a huge gain! We had to come back in 3 days to see if she was able to gain weight. We return and she had gained some weight. Her pediatrician was no longer concerned about her weight, but was still worried about the head circumference. We then realize it was a charting error. Happiness was back, we were so glad to have Eva home. We had ton of doctor's appointments but I didn't mind.  The rest of the first week was great.

Then horror hit that Monday afternoon. We were at Target picking up medication for Eva. I looked away for a second and looked back, she had spit up all over herself, was blue and her heart monitor was not working! She was not breathing, she was limp, and her eyes rolled back in her head. I screamed for my husband and for help. My husband yelled at me "CPR Anya CPR". I laid her down on the floor and gave my daughter CPR. It took about a minute and then she coughed, and was choking. She was breathing again and by this time 911 had been called. The EMT squad arrived and we head to the hospital. We were taken to the local hospital where they had nothing to fit my 5 pound daughter. They called to have a medivac pick her up and take her back to the hospital we had just left a week ago. This time she was in the PICU  (pediatrics intensive care unit). They observed her for just over 24 hours and sent us home! I was amazed that they would send us home so soon, but trusted them. We head home Wednesday morning. She was scheduled to see her pediatrician Thursday morning. So we went there in the morning and her pediatrician did not like the way her lungs sounded. We were off to the hospital for x-rays. We left to go grab dinner. Half way through dinner her pediatrician calls and says she had pneumonia! She needed to be hospitalized. She was admitted Thursday evening and they observed her overnight. They sent us home Friday morning with an antibiotic. Again I was shocked! We got Eva home and made dinner. I fed her at 11pm and then tucked her into bed. At 11:30 pm horror struck again! Her heart monitor sounded and it was Monday all over again. She had spit up, she was blue, and not breathing. Her eyes rolled back in her head and she went limp. My husband called 911 as I gave Eva CPR. It was an exact repeat. The EMT squad arrived, Eva and I were taken by ambulance to a nearby field where a helicopter was waiting. We were in the air again, on our way to Pittsburgh's Children's Hospital.

Eva was very dehydrated and her blood count was dangerously low. They intubate her and began to pump her full of fluids and blood! She was taken off of the ventilator after 4 days and put on oxygen via a nasal canula. She was doing fine and the doctors wanted to send her home. With our begging they ran some tests, no infections, no fluid in her lungs! She was fine! After a week of observing her, they schedule her to be discharged. The night before discharge she had another spell. It was a repeat of what she had been doing when she was with us! The monitor sounded and she was blue, covered in spit up, and lifeless. The nurses gave her CPR and oxygen via blow by and she recovered. The doctors finally saw what we had feared happening again at home. The doctors have found that she has severely narrowed airways. So they sent her off to the operating room for an airway dilation. After monitoring her for 6 days they were confident this was the problem and now they had solved it. They scheduled her a discharge date and were ready to send her home. The night before her discharge it happened again. This time it was the worst yet! Her heart rate was below 40 and oxygen sats were below 20. CPR was given and she was intubated.

And this is where we stand now. Not knowing what is causing these random attacks, but knowing our sweet baby girl wont get to come home until they figure out what is. A baby who has fought for 5 months to breath, live, and survive is now fighting again. This is a fight against an unknown demon.

Starting off!

Our First Post!

Usually I post updates, thoughts and feeling on our group page on face book.... But I know family and friends that do not have facebook want to be able to acess this information. SO HERE WE ARE! :) I am going to follow this post with a post with Eva's story in it. :)