I have also been somewhat avoiding typing this entry. I guess seeing it in black and white will just make it all too real.

Emily has been diagnosed with cerebral palsy. We heard those God awful words last month at her routine well check, and after a gut-wrenching trip to see a neurologist at Children’s Hospital in Dallas, our fears have been confirmed. After studying her the results of her MRI, she has been given a 20-30% chance of ever crawling. Even less of a chance of walking. Hearing that literally felt like someone had shot me in the chest.

A lot of people don’t understand what cerebral palsy means. There are many variables. For my daughter, it means that her torso and neck are very weak. This makes feedings very difficult. She often arches her neck and “fights” her bottle because she feels as though she has no control over the flow of milk. It also means that the muscles in her arms and legs are too tight. They are becoming more and more rigid as she gets older. When she extends those mucsles, she cries out in pain. We also found out that there is a chance that she could suffer from mental retardation as well.

I feel so selfish and horrible as I type this. Because none of this should matter to me, I LOVE my daughter! She is amazing… I’ve never seen a baby so happy. She smiles more than any child I’ve ever seen, even with tears in her eyes at times. She is so strong and vibrant, she is my everything.

BUT I AM DEVASTATED FOR HER…

I am scared of the pain that she will have to endure, both physically and emotionally. I am so scared that others will not love her the way I do. I am scared of the teasing, the lack of undertsanding that others will show. I am scared that she won’t go to prom, I am sickened by the fact that I may never help my little girl pick out her wedding dress. NOT because it has changed my view of how life would turn out, but because I wanted her to be happy. I wanted to give her the world, and I feel like somehow I took it away from her.

Everyone keeps saying it’s not my fault. I explained it to my husband this way… “If you had a car crash and the kids were hurt… Even if the wreck was not your fault… you would feel guilty.”

My body failed this baby. The drs seem to think that there was a blood clot in her cord, which in turn caused a stroke while she was in the womb. The same thing that killed all the others.

It makes me sick.

But I will not lose hope. My daughter is HERE. She did not die like her brothers and sisters before her. She is a miracle regardless of what any test or diagnosis may say otherwise. She may not be “up to par” with our world’s standards, but she is LOVED.

She will always be loved. I will do anything to help her. I will always fight to give her the best chance that she can have.

I WILL take my daughter dress shopping, I WILL do all of the things that mother’s and daughters are supposed to do together.

Because she is my little girl. The one I prayed for. The one I cried for. The one I would give my life for. And I thank God every day for her existance. I thank Him, because I did NOT have to bury this daughter.

The night that she was at her worst in the NICU, I promised God that if He could just GET HER HOME, I would handle the rest. I could handle anything, no matter how bad, I just wanted my baby to LIVE.

Now it’s my turn.

Her birth was one of the single most terrifying moments of our lives. It all happened so fast, almost too fast to even make it to the hospital. That was the longest car ride of my life. We arrived at the hospital at 11:56pm, and she was born at 12:05 am. I guess she just could not hold on any longer.

Emily's Birth

I knew by the look on my husband’s face that she wasn’t okay. After she came out, I was too scared to bend forward to look at her. I was scared as to what I might see. She was quickly wisked away.. I remember seeing her lifeless little body hanging limply form the nurses hands. Our son was in the room with us… in all the chaos of the quick delivery, there had been no time to make arrangments for him. All I kept thinking was “Dear God, please don’t let Nathan have to watch his sister die”.

We were surrounded on all sides by nurses rushing to care for me and our daughter. My husband called out to me through the chaos, telling me every detail of what was being done for our baby.

Helping Our Baby Breathe

“She’s starting to turn pink!” he said… “Now she’s moving her arms!”…

Then I heard the best sound in the world… like a small kitten crying out for it’s mother..

Emily CRIED!

And all I could do was thank God. Even if it was the only time I would ever hear it, I thanked God for letting me hear that little cry.

They began to rush her off the the Neonatal Intensive Care Unit (NICU). “Has she seen the baby?!?” my husband asked. And thank God he did.. as they rushed outt he door they held my beautiful little girl up for me to get a glimpse of before they took her away.

The following five weeks were the most exhausting, terrifying time I have ever had to live through. Our baby girl was a trooper… she tried so hard to breathe on her own. But in the end, she needed a little extra help and was put on a ventilator for several days until she was stong enough to breathe on her own. She lost alot of weight initially, she dropped from 3lbs 7 oz down to 3lbs 2oz. The drs assured us it was okay for her to lose weight at first, but it was still so hard seeing her get even smaller. She had several rough days while on the ventilator.

On the Ventilator

One night, her tiny body was filled with fluid. Every time they picked her up to reposition her, you could see the fluid shift from one side of her body to the other. Every 20 minutes or so, they would have to use a tube to suction fluid off of her lungs. When I laid my hand on her chest, I could feel her lungs slowly start to gurgle with each breathe. She pulled through, and like the little fighter she was, ended up breathing on her own within that week!

She began to slowly but surely improve. Each day she was gaining weight and growing stronger. The Dr. thought she was doing so well, that he moved her from the NICU to the Intermediate Care Nursery (INC). We were so thrilled! We were one step closer to bringing our baby home!

The First Time I Ever Held Her

Mother’s Day was very bittersweet for me. I spent half the day at home with my little boy, and the other half visiting my tiny baby at the hospital. I kept telling myself that it was all temporary, and that soon we would all be together as a family.

But I just couldn’t shake the horrible fear in the pit of my stomach.

I held Emily for hours that night. All the nurses kept telling me to go home and get some rest. But I just couldn’t… something didn’t feel right. Emily seemed so sluggish, she could barely open her eyes to look at me. And she seemed so bloated.. her belly was enormous. “She’s just growing and getting fattened up” the nurses laughed. “All babies are tired when they are growing”.

Finally, at 4am… I drove home. I cried the whole way. I knew the nurses were probably right. I just didn’t understand why I felt so scared and helpless. I was so overwhelmed, I pulled off to the side of the road and cried.

An hour and a half later… I received the call every NICU parent dreads.

Emily had gone down, bad. They were moving her back to the NICU. Emily was having what is called an “NEC scare”.

NEC is when a premture babies intestines are too fragile to handle the stresses of digestion. The intestines literally begin to die. If the intestines died, there was a very high chance that she would die too.

My Sick Little Girl

Emily was so sick, she looked like a shell compared to the baby I had held only hours earlier. That was one of the hardest days of my life. I felt so guilty for not listening to my gut instinct the night before.

Over the next several days, Emily battled the infection in her stomach. She did not eat for 5 days, an eternity for anyone, especially a baby. The infection in her stomach spread to her a bloodstream, a condition know as sepsis. She had two different types of bacteria growing in her blood. The dr.s started a 21 day course of very strong antibiotics. We all prayed that they had caught it in time.

The next day, they ordered a spinal tap to check Emily’s spinal fluid for any signs of infection. the dr. explained that very rarely, the bacterial infection can cross from the blood to the spinal fluid. If that happens, it is life threatening. It can cause massive brain damage as well as many other huge complications. Twelve hours later, we received the news we had been dreading.

The infection had indeed moved to Emily’s spinal fluid. She was diagnosed with Spinal Meningitis. Luckily, since they had taken every precaution, it seemed like they had caught it in time.

The next few weeks crawled by. Emily was so sick, but we saw the strength in her eyes. She wanted to come home as badly as we wanted her home! It was heartwrenching watching the endless ivs, heel sticks, and other tortures that only a NICU parent could understand. I had to help hold my baby down on more than one occasion while she was stuck over 5 times. I began to worry that even if she recovered physically, that she might never recover mentally from the endless amount of pain being inflicted on her. The nurses kept saying “Don’t worry, she won’t remember”. But nothing anyone said could take away the pain I saw in her eyes.

During that time, we also found out that at some point in the womb, Emily had suffered a stroke. Appearently, Emily had inherited the same clotting problem that I have. The same one that had taken the lives of so many of her siblings. She had developed a clot and it had caused her to have a stroke.

An MRI revealed significant brain damage. Unlike most neonatal brain injuries, there was not a definitive prognosis for our little girl. Some babies with such injuries show no signs of damage later on in life. Others are stricken with disabilties such as deafness and cerebral palsy. This was a very difficult thing to handle. The Dr. said that based on the findings on the MRI, Emily should not be able to move her right side at all. But she was exhibiting complete control of her right side! Our little miracle was surprising them all! The Dr. even said that the baby on the paperwork and the baby in front of his eyes did not seem to match!

She was so cooridinated in fact, that she surprised them all by taking a bottle all by herself! We were so proud! I cannot explain how happy it made me to see our baby girl eating and growing stronger again!

Emily's 1st Bottle!

After 21 days of antibiotics, and 34 full days of the NICU, Emily was finally released from the hospital! She was infection-free and weighed a whopping 4lbs. 11 oz!

FINALLY Leaving the Hospital!

Bringing her home was the most surreal experience of my life! It felt like we had won the lottery! Our beautiful little girl was finally HOME!!!

The past month has felt like a dream… falling asleep with my baby beside me is something that I will never take for granted. We still have many fears for our daughter. The thought of what lies ahead scares me to death. I worry about what disabilities she may face… if she will be made fun off at school.. whether she will ever be able to get married and have a family of her own… these are the questions that we don’t yet have any answers to.

All we can do is thank God for bringing her so far, and trust that he will carry her through the good times and the bad. Her life might not be perfect, but we already know that our little miracle has a PURPOSE. And that’s what truly matters.

Our Family ~ Finally Complete

Angel Girl

So Precious

They are worried that the infection has somehow crossed into her spinal fluid… they said we have to wait a few days before we will know because they culture it.

The dr said she needs antibiotics for 10-18 days. Pray that they caught it in time to get rid of whatever is hurting my baby so bad.

We are still unsure about where it came from, she is still under a “NEC scare” for now. She looks so bad, she is back on oxygen, and is getting antibiotics to fight the infection. The nurses have been so nice, they are so worried for her. They have a nurse with her at all times. They said she is a very sick little girl

Poor baby has an iv in her head

Sick baby girl

When shift change happened this morning, one of Emily’s old nurses, Melissa, saw her and noticed how different she was acting, and they alerted the dr. They aren’t sure what is wrong yet, they are ordering bloodwork.

I am so completely terrified… Walter is on his way to see her right now from work… I swear if I had a car I would already be there.

I can’t believe this is happening… dear God please let my baby be ok!!!!!!!!!!!!

"Happy Mother's Day Momma"

I am so worried about my baby… I need to be asleep right now but I just can’t take it.

I cried the whole way home tonight. I didn’t want to leave her, but I knew I had to. I stayed until 2am. She is having horrible apneas still, so bad that they had to actually use an oxygen mask on her at one point. Walter was there, and he said it was terrifying. She looks so weak. They still think its just reflux, but its hard to see her look like this. She isn’t looking at me anymore… she barely opens her eyes every once in awhile… but tonight she barely even looked at me when I held her. I put a pretty new hat on her for mother’s day, and she opened her eyes for a second, but that was it. The nurse could tell how worried I was. she kept telling me I’m just tired and would feel better if I took better care of myself. They dont get it, I’ll feel better when my baby is home!!!

Pretty girl in her new hat

I had to pull over in the mcdonalds parking lot on the way home because it was raining and I was crying so hard that I couldnt see. I was listening to this radio show where you can call in and just talk, and I actually called and talked to one of the counselors. I felt bad, because I knew it was really a lot different than the typical “my boyfriend sucks” call. But she actually prayed with me.

I need to go to bed, I need to be asleep right now… today has just broken me. This has to be the worst Mother’s day in history.

They think that she may be having reflux, and that is causing the apneas. They said anytime preemies go up on the amount they are fed, they can develop reflux. We might have to put her on reglan for it. I hope not, I’m taking it to help my milk supply, and it sucks.

I am just so worried. I know its normal to them, but its NOT for me. And on top of it, I can tell she isn’t feeling well. And I dont care if its just reflux, its soooo hard to leave my baby when she looks so sad. She barely opened her eyes at all today. They said she’s just tired, but I dont like it. And I freaking hate how rough they are with her. It seriously doesn’t take that much more effort to be gentle. I miss the kindness of her old nurses in the NICU

I know I’m probably over-reacting, I’m just tired of them talking to me like I know nothing about my own baby

Sleepy Girl

Sleeping Angel