Emily’s Story

All of the precautions we had taken to keep Emily inside could not hold her in any longer. On April 30th, 2009, our precious daughter was born into this world. Her arrival was much too early… nine weeks early to be exact.

 

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