Disclaimer: Stephanie Meyer owns Twilight and all characters. The plot belongs to the author.
Thank you to those that stick around for my entire story. It's going to be a hard one for me to write but this story does have an HEA.
*I'm happy to announce that I have a beta! Thank you to Princess07890 for offering to beta my story. I can't tell you how excited this makes me! You are the bomb dot diggety! xo
** Much thanks to Chandrakantra for making my FFn cover and my FB banner. I love it SO much! You are amazing!
I'm nine months pregnant and I feel awful. I can't breathe and my feet hurt. I try sleeping in the recliner but even that doesn't help my breathing. I feel like a whale. My feet are swollen to the point of not being able to wear normal shoes. So, Crocs™ have become my best friend. I am able to just slip my feet into them without bending or tying. I truly look like I've swallowed two basketballs; that's how big I am.
It's time for this baby girl to be born.
My C- Section is scheduled for January 11th and it can't get here soon enough. Another week and we will have our baby girl.
My husband, Jacob, has been great; he even tried fixing me dinner tonight. Grilled chicken and potato casserole was what I had planned, so he offered to prepare it for me, but he didn't even know how to grill the chicken. Are you kidding me? What man doesn't know how to 'man the grill'? But, really, I was thankful that he tried, he has been extra sweet and extra helpful these past few weeks.
"Bella,beautiful,sorry you had to help me fix dinner tonight." Jacob sighed. "I wanted you to just rest and relax; instead, I was a total idiot about dinner." Jacob put his arms around me in a hug. Even though I'm the size of a house, his six feet four inch muscular frame still dwarfs me. His big strong arms still reach all the way around my ever growing body.
I love Jacob's dark skin and jet black hair. I hoped our daughter would look just like him, except I wanted her to have my eyes. I am sure with Jacob's Native American heritage that she would definitely have dark hair, but I still hold on to the hope that she will have my bright blue eyes. They are the only feature that sticks out on me. I havelong dark brown hair and pretty blue eyes; that's the best way to describe myself.
Jacob and I met while we were in high school and started dating our senior year. I was a geek who was helping out in the school library and Jacob was the jock that needed assistance looking for a book. I helped him locate said book and the rest is history. He told me later that he liked my geeky ways and my beautiful blue eyes. He made up excuses to come see me in the library until he finally got the nerve to ask me out on a date. We fell hard for one another and married as soon as we were out of high school. I was eighteen and Jacob was nineteen.
I worked at the local library in Forks while Jacob worked at a car dealership selling cars. He was taking a few college courses at night. I wanted to as well, but our finances wouldn't allow both of us to attend classes. We decided that Jacob should take classes first.
"Jakey, I didn't mind helping you fix dinner. I have totally enabled you by fixing you every meal since we've been married." I cupped his cheek and smiled at his pretty brown eyes.
"Bella, you have, but all amazing wives fix delicious food for their husbands. Why would I ever fix my own food when you cook so well? I am so spoiled, but it's completely your fault." He leans down kissing me tenderly.
"I know sweetie, I'm to blame." I wink at him. "Remember we need to finish the baby's room by the end of this week. Can you paint it this weekend? I want to have the crib and everything set up. Plus, Alice is dying to come over and decorate, but we can't do that until the room is painted Pretty in Pink."
"Yes love…I'll have it ready to go by tomorrow night. How's that?" Jacob rolls his eyes.
"Perfect, Jakey." I hug him around his waist, my arms not quite fitting entirely around him.
January 11, 2006
I'm so nervous; it's 4:30 in the morning and I didn't sleep well at all. One, because I couldn't breathe, two, because I'm scared to death of the scheduled C-Section I'm having today and three, Jacob was snoring.
On the bright side, Jacob and I will be meeting our daughter in a few short hours. This is going to be a wonderful day, I just know it.
I roll out of my recliner and waddle my way to the shower. Rubbing my tired eyes, I turn the water on in the shower so it can heat up. I look in the mirror as steam fogs it up; I smile, knowing that we will be bringing home our precious baby in a few short days. I make a big heart on the mirror with my index finger before stripping out of my clothes and stepping into the warm spray of the water.
After my shower, I'll wake Jacob; he sleeps like a rock, which makes me kind of jealous right now.
Our drive through town to our little hospital is a short one. It's drizzling outside, of course, but nothing is going to make this day drab. Not with a new baby on her way.
I slip my hand under Jacob's, which is resting on my knee, and he gives mine a squeeze and me a smile. He is just as excited as I am.
The hospital parking lot this morning is quiet. We find a parking spot quickly and Jacob grabs my bags and helps me out of the car. We walk hand in hand to the admitting desk.
"Mrs. Black?" The lady at the desk calls out.
"Yes…I'm Isabella Black." My voice sounds a bit shaky when I answer her, my nerves are getting the better of me.
"I need to ask you some questions before we can admit you. Then, you will go to Tower Two and up the elevator to the maternity wing on the third floor." Her smile was sweet and comforting.
"Um…okay." I manage to say.
"What a beautiful day to have a baby." She puts me at ease just a bit, but not much. "Let's get these questions answered, so you and your husband can meet your new baby." I look at Jacob and notice that he's just as nervous as I am at this point.
Jacob and I smile at her and answer the five thousand questions she asked. She attaches a hospital bracelet around my wrist and sends us on our way.
Jacob holds my hand, and tries to calm me as we walk towards Tower Two. All of a sudden I can't shake this feeling of dread. I have a bad feeling in the pit of my stomach, but I'm not sure why. I know I'm in great hands. My doctor is very good, and I trust him with my life, but I'm really just scared to pieces. My heart is beating out of my chest as we find our way through the hospital. My five foot four frame is waddling with the extra fifty pounds that I've put on during my pregnancy; Jacob is walking way too fast.
"Jakey, slow down please. I know you are excited, but I'm running to keep up with you."
"Sorry, beautiful,"He slows his pace so I don't waddle as much; his hand has not left mine. He squeezes his apology and we both walk slowly to the elevator and on to the maternity ward.
I've changed into the white hospital gown they've given me and now for the fun part. My IV is inserted and more questions are being asked. Jacob gets a bracelet for when the baby arrives. They walk me to the surgery suite and I'm now being prepped for surgery.
Dr. Banner arrives and he is in perfect control of everything around us. I trust that his capable hands will deliver our baby without incidence.
I'm lying flat on my back with my arms stretched out away from me, the lights are bright, and I close my eyes for just a moment. Jacob is at my head sitting in a chair, encouraging me.
"Love, you are doing great." His lips are at my ear and his hand is rubbing my arm closest to him. He gives me light kisses when Dr. Banner announces that he has made the first incision.
Jacob stands and watches as the doctor cuts me wide open so that our daughter can make her grand appearance.
"Jakey, please don't faint watching this."
"I won't, I want to see the moment our daughter enters the world and takes her first breath." Tears run down my cheek, I'm an emotional, hormonal mess.
I don't feel pain, but thetugging, pushing, and pulling is becoming difficult. I feel nauseous, but I take deep breathes and try to focus on the wonderful outcome.
After a few minutes, and lots of hands helping, Dr. Banner announces that we have a baby girl.
"Congratulations, Isabella and Jacob; here is your beautiful baby girl." He holds her up so that we can take a peek before he hands her to the nurse. She needs to clean her up, measure, and weigh her.
"Bella, she's so beautiful." Jacob's eyes well up with tears. I'm crying at this point, I'm so happy and thankful that this part is over.
After a few minutes, it dawns on me that the baby isn't crying. I hear faint sounds and suctioning noises.
"Jakey, why isn't she crying? She should be crying."
"I'll go and check sweetheart, don't worry." He leans down and kisses my forehead before leaving me.
The nurse finally brings the baby over for me to kiss her little pink cheeks and for a quick picture. She's crying at this point, but it's faint and she sounds like a kitten mewing.
"Why does she sound like that?" I keep asking but no one answers me. I know that she was suctioned after she was delivered because I heard it, but she still sounded different than what I expected a newborn to sound like with strong lungs.
"Mrs. Black. Your baby is having a bit of trouble breathing; it's called respiratory distress, so the Neonatologist and Respiratory Therapist will check her out. She's going to the Neonatal Intensive Care Unit for observation. As soon as you are finished in recovery, you will be wheeled in to see her."
The nurse whisks away our sweet baby with Jacob following behind her. Doctor Banner finishes closing me up as I cry at the unknown. I want my baby… why is she having trouble? Please God let her be okay...Please. I pray.
The anesthesia made me sick; I'm vomiting and I feel like I'm floating. I can't keep my eyes open, but I can hear everything that is going on around me. This is like the worst hangover I've ever had. All I wantis to see my baby. Jacob finally makes it to the recovery room to check on me, but I wanted him to be with the baby, she needed him more than I did at the moment.
My thoughts were all over the place; I was drifting but could only see the back of my eyelids.
Just black, that's all I saw. It was as if I was in a dream and couldn't wake up. The beeping sounds of the monitors and the constant squeeze of the blood pressure cuff kept me in the here and now, even though my body wanted sleep.
After a few hours, I was wheeled into the NICU. I passed babies hooked up to machines, most were so small that they should have still been in their mother's womb. The NICU was warm and quiet, except for the low beeping of monitors and machines. As I neared the bay that our baby was assigned, I came to the realization that our daughter was one of those sweet babies hooked to a monitor. Tears slid down my cheeks when I saw how helpless she looked, but she was utterly beautiful.
She did have jet black hair, a ton of it; it was peeking out from underneath her hospital cap.
She was lying on her back and I noticed that her arms were lying at her sides and not drawn up like most newborns. Her legs were the same way. Her little arm already had an IV in it and a nasal cannula was in her nose.
She was on oxygen.
I reached out my hand to touch her little face. I was completely in love with my baby. Jacob and I decided to name her Leah Noel Black.
She weighed 6 lbs 4 oz.
Four days later
"Bella, you're being discharged, but Leah has to stay." I nodded at Jacob as my tears welled up in my eyes. "I want her to come home, as well, but she needs to stay until they can figure out why she is still having difficulties."
"Um…I know, but I …I want to take her home with us. This isn't fair, Jakey." I cry into his shoulder.
"I know sweetheart, I know." He wipes tears from his eyes, then from mine.
"The Neurologist is coming in tomorrow for a consult so hopefully we will get some answers then. We can visit her everyday and we can stay as long as we want, but you have to be discharged. We'll go home and shower, and then come back…okay, love?"
"O-Okay." I sniffle and blow my red nose. "I love you, Jakey."
"I love you, too, Bella."
Leah is now two weeks old and still in the NICU. The Neurologist that came to assess her told us that he suspected that she had something called Spinal Muscular Atrophy, or SMA. I immediately asked him what SMA was and he said not to worry about it until it was absolutely necessary. He wouldn't fucking tell me what SMA was.
Leah was scheduled to have a DNA test to determine if she did in fact have this disease. I was so upset, and so pissed at the doctor for being tight lipped about what he suspected. All I wanted to do was get home, and Google SMA.
The drive home was agonizing. Jacob drove faster than normal, and I watched the outside passed by my eyes. I was looking but not really.
I was lost inside of my head.
As I sat down at my computer, I Googled Spinal Muscular Atrophy; my heart stopped when I read the horrible diagnosis on the screen.
Spinal Muscular Atrophy (SMA) is a motor neuron disease.The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. When the muscles used for breathing and coughing are affected and weakened, this can lead to an increased risk for pneumonia and other respiratory infections, as well as breathing difficulty during sleep. The brain's cognitive functions and the ability to feel objects and pain are not affected. People with SMA are generally grouped into one of four types (I, II, III, IV) based on their highest level of motor function or ability.
SMA is the number one genetic killer of children 2 years and younger.
My poor beautiful baby girl...
I cried and cried.
Jacob and I were in total shock, and I prayed that the DNA test came back negative. The worst part was that we would have to wait for fourteen days before the results were back.
My days consisted of going to the NICU to hold my Leah and spend every minute I could with her. I also prayed. My nights consisted of the same thing, except I didn't have my baby girl to hold in my arms. I also cried myself to sleep every night.
Fourteen days later and the results of the DNA test
"Mrs. Black, the DNA results are in; would you like to follow me to the conference room?" Dr. Sampson asked.
Not really, but I guess I'll follow.
"Yes, but my husband isn't here yet, he's on his way from work."
I follow like a death row inmate on his way to the electric chair.
I take a seat in the cold conference room with Dr. Sampson and the nurse sitting across from me. I feel like I'm going to throw up, but I try to hold it together. I'm not going to cry. I'm not going to cry. I repeat that mantra over and over until I hear them address me again. My eyes are focused on the textured ivory wallpaper that is peeling back at the seams, just above where the doctor and nurse are sitting. I'm drifting again trying to surface and face whatever the answer is that they are ready to deliver to me.
"Mrs. Black?" The Neonatologist, Dr Sampson, says. I look up and nod my head. "The DNA test results came back with a positive diagnosis of Spinal Muscular Atrophy type 1. This is the most severe type of SMA. I'm sorry but the prognosis is not good." I nodded my head, my hands are clenched together under the table and my lips are smashed together.
Where is Jacob? I need my husband.
A few days before the DNA sample was taken, Leah coded and had to be intubated. She has been on a ventilator for the past few weeks. She wasn't strong enough to breathe on her own and the ventilator has been a blessing.
"Okay, well, I'm not going to let my baby die." My voice is strong and I am in control. I have cried my eyes out for two weeks, but, now that I know,I'm going to have to be Leah's advocate and do what is best for her.
"Mrs. Black, you have two options. We can extubate her and let nature take its course or we can perform a tracheostomy on her."
"My husband and I want her to be trached," I say it with confidence. I had talked to Jacob about the possibilities and we were going to ask for her to be trached. I knew that I could not watch my baby struggle to breathe and watch as she died. Not going to happen. I was in fighting mode and I was going to fight for her.
Jacob finally arrived at the hospital after the diagnosis bomb had been dropped on me. I was in the lactation room, pumping, since Leah didn't have the strength to suck. An NG tube was down her nose positioned in her stomach. She was going to have to have a feeding tube surgically inserted permanently, now that we knew our future. She was still getting my milk, so that was a good thing.
Jacob was crying when he entered the room. Evidently,the doctor and nurse cornered him in the conference room to deliver the horrible news. I looked at Jacob and plainly stated that I had already informed them that we were going to trach Leah. He nodded and cried into my shoulder. We held each other close until we could compose ourselves enough to leave the room.
We both sat with Leah and held her, singing lullabies and loving her, not knowing what the future was going to bring.
A/N: This story will deal with a disease that actually affects my daughter in real life. My husband and I have dealt with this for almost 8 years, it's heartbreaking but it's also inspiring. The details of the disease are correct but of course the story between Edward and Bella is fiction. There will be romance so no worries. This is in no way a reflection of my relationship with my husband…although he rocks my world. Most of the events that take place with the daughter in this story are true. I will answer any questions you may have; I am very open about my daughter's condition.
My youngest also has Down Syndrome; but I decided to only address SMA. She is an awesome little lady and has brought so much joy to our lives. We are truly blessed to be her parents. It's been VERY hard in all aspects of our lives. We feel like single parents to our other kids because our daughter cannot be left alone for more than 5 minutes at a time. She is trached and is ventilator dependent. We made the decision when she was two and half months old to have the tracheostomy surgery. She has a feeding tube and a feeding pump, a saturation monitor, and uses a Cough Assist machine to help her move secretions. She gets four breathing treatments every day and has to be re-positioned every two hours to prevent bed sores. We have nurses that help us out a few days during the week and we do have night nursing, but it's still very hard to deal with as a parent….knowing that your child's days are limited.
Most of what I wrote actually did happen the way it happened for us, but….I promise there is a love story between Bella and Edward.
I hope I haven't scared you off because I really wanted to write this story so that I could bring awareness to this devastating disease.
Thank you for taking your time to read my story.