Tuesday, March 5, 2013

Meet baby Paige.. met through The Lily Grace Project: Hairbows for Healing

Meet our NICU (Neonatal Intensive Care Unit) warrior Paige that we met through the Lily Grace Project: Hairbows for Healing at Kosair Children’s Hospital in February 2013. Daughter to Lori & Mikie Hall.. and little sister to 4 year old Mattie.

Paige’s story as told by her Mommy:

When I was asked to share my daughter’s story with our friends on the Lily Grace page I spent days beginning to type our story, and having to stop because emotions got the best of me..... but I think that I’m finally ready to share our journey from the beginning.

Paige Livian Hall is a preemie at the Kosair’s NICU who loves to wear her hair bows from Never Forget Lily Grace!! But what many do not know about my sweet Paige is that 10 weeks ago I was told that she would NEVER survive outside of my womb!!!

At my 20 week ultrasound my OBGYN found that I had little to no amniotic fluid. I was sent to a group (which we will leave unnamed) of Maternal Fetal Medicine (MFM) Doctors to have them look into this issue! As I had never heard of someone having no amniotic fluid, I was absolutely terrified but hoping that I would get some type of good news & answers once I saw the specialist!! I got anything but that!!!

The specialist informed me I had NO amniotic fluid!! The good news was that our baby girl had a bladder with 2 functioning kidneys as well. So the amniotic fluid was being made but I somehow was leaking the fluid... the Drs only answer was to send me home for two weeks to do partial bed rest 16 hours a day and see if time and rest would allow the possible tear in my amniotic sac to heal!

IF in two weeks I still was low on fluid, I was told that he recommended electively terminating my pregnancy! Those words cut thru my heart like a knife!!! I begged for options and was told there was none! That with low fluid I would go into labor at any point, that our baby would have no way of developing her lungs enough to survive once born, would experience multiple mental and physical deformities that if she did survive would cause a very low quality of life.

I went home and did my own research online.. searching for anything that I could to help my baby’s chance for survival. I found a few mommas that experienced my exact situation. Some mommas with success stories but just as many mommas with stories that didn't end the way I wanted my baby’s story to end! I was determined to find answers. I just knew there had to be something that could be done to at least give her a chance.

A week after I saw the Dr I began having what I thought to be contractions. I was admitted to University Hospital where I was soon sent home because being only 22 weeks pregnant.. there was nothing they could do for my baby! I was told that I would be readmitted once labor fully began or once I hit the magical 24 weeks point where they can assist the baby’s survival! I was devastated, scared and very uncomfortable.

My doula had sent me the name of a Dr that she highly recommended.... I decided the day that I was discharged to make an appointment with this one last Dr and see if maybe..just maybe he would help me! Within two days this Dr fit me into his schedule!

The day I saw him, my husband and I pleaded with him as he was our last hope. He immediately took me to ultrasound and preformed it himself. To his surprise he found a perfectly healthy 22 week baby and 3.2 centimeters of fluid (9-24 cm is normal) I asked him how much fluid was needed to make this pregnancy viable and he informed me that though it is still very low, as long as he found 1 cm or more he knew the baby had fluid to develop her lungs!!!!!

As I finally for the first time in two weeks felt I could take a sigh of relief, I began to feel the contractions coming back!

My new Dr informed my husband and I that on 12-22-12, he was admitting me to the hospital where I would remain until our baby was born.. Upon arrival I had IV fluids, multiple IV antibiotics (to prevent the possible deadly infection that I and my baby were very high risk to get) frequent heart monitoring, meds to stop contractions and received ultra sounds 3 times a week to check on the baby & my fluid levels!!

I spent Christmas, New Years and the entire holiday season in the hospital. I missed seeing my 4 year old daughter’s face Christmas morning when she woke up! Though it was very difficult… I knew I was doing all I could to give our baby Paige a fighting chance!!

As the weeks passed I was relieved to finally hit that magical 24 weeks! Just knowing if she was born she would have a chance made me feel a bit better!! Though she would be higher risk then even a typical preemie due to the low fluid!

On January 17th at 25 weeks and 5 days my water fully broke. We tried everything to stop labor but nothing was working! But like the dr said at this point every hour Paige was in the womb was beneficial. The next morning after 24 long hours of labor I began to experience horrific abdominal pain! I was then rushed to the operating room where my husband and I were informed that my placenta was abrupting & it was time to have our baby!

On January 18, 2013 (my Dads 60 birthday) at 10:27 am (25w5d) weighing 2 lbs even, we gave birth to our little miracle baby Paige!!! We had a close call with her the 1st day! Her oxygen dropped for 6 min and wouldn't bounce back up. Just when the Dr’s thought we were going to lose our baby, once again Paige proved them wrong and brought her oxygen back up!

The baby who I was told had 1 in 1,000 odds of survival decided she was going to be that 1!!!!

She is now 6 weeks old, weighs 3lbs 2oz, is off the ventilator onto the nasal cannula, advanced into the intermediate nicu and preparing to be moved out of the incubator and into a crib!!!

I owe my daughter’s life to mothers intuition (I knew my baby was strong, I could feel her kicking & there was no way that I was letting anyone tell me otherwise!!)

The Dr who I now look up to for giving us a chance and to the nurses & doctors from Kosair’s...I know that my sweet Paige is so strong and fighting so hard to be here!!! But Kosairs NICU has made her future possible!

These past months have been a blessing but very hard on our family at the same time. The day that my husband and I walked in to find the bow that was left with Lily’s picture on it, we were overwhelmed with joy! It brought a much needed smile to both of our faces! She was too small at the time to wear clothes and last week for the first time I was able to put her "lily grace bow on her"

Paige now wears her bow frequently as it’s the only one small enough to fit her & I tell her every time about sweet Lily Grace! When Paige grows out of her bow, it along with lily's picture and story will be placed in her baby book! Not only is Lily being Remembered now, her story will be told throughout the years, every-time we open up her baby book to reminisce!
Your story and what all you all do encouraged me to want to give back as well !!!! So my husband and I have signed up and started a team to walk in the march of dimes this year!! We will be captains of our team "Prayers for preemie Paige".

I pray since the walk is in May and the goal for Paige to come home is her due date April 27th..... That maybe Paige can join us as we walk to help babies such as our sweet girl!!! If indeed she is present for the walk, I would love for her to be wearing one of her "lily grace" bows and have Lily’s picture and story attached to the stroller or wagon so she will be there with us!!

If it wasn't for your inspiration I don't know if I would have gotten around to signing up and putting all of this together! So I want to be sure Lily is with us to continue to inspire me and share the story! Thank you for sharing Lilys story, putting a smile on our face when it was very much needed & inspiring me to get up, get out there and give back myself!!!

**Thanks Lori and Mikie… this is Lily’s Mom and this story and the nice things you said.. geez.. definitely made me cry. My family and friends will be so happy to hear how much the Lily Grace hairbow meant to you and your family!

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