Thursday, March 29, 2012

Breathe Mylah.... Breathe...

Those were the 1st words I uttered to my daughter as the doctors sat her on my chest after she was ushered from my womb.  Breathe.... Please.... Breathe....

I begged her to breathe. I just wanted her to utter one moan, cry, scream, anything to let me know that she was alive. Mylah was purple, her eyes wide open but no sound, no movement. That was the hardest thing in that moment.  I massaged her back, tried to massage her chest like I'd seen on the many baby birthing shows I watched over the years. The room dimly lit, quiet, everyone around me seemed to disappear and it was just her and I.  I begged, pleaded for her to cry. Tears formed in my eyes. After what felt like eternity, I handed her off to the nurses praying for a miracle.  I felt so helpless, there was nothing I could do.
Then..... I heard it... the meek sound of my baby... She cried, not a full cry, but a small cry and it was GOD's way of showing me that he answered my prayer!

Mylah was swaddled and given back to me and we met. For the 1st time, mother & daughter; coach & fighter. She was beautiful, nothing like I could ever imagine.  The moments after are somewhat a blur. Juwan and I had so much support during my labor & delivery.  The hospital was phenomenal in the accommodations they made for us and our family & friends. 

I arrived at the hospital Friday, March 23, 2012 at 8 am. During the first couple of hours there were some stressful moments.  I had to discuss my options for delivery multiple times. I had always expressed that I wanted all measures used to help Mylah get here as best as she could.  I knew that a C-section wasn't really an option due to some medical issues that I have but telling a mother whose been waiting 41 weeks to meet her 1st child is kind of hard.  I finally had to realize that what my doctor wanted was what was best for my overall health and she didn't want to put me in danger of leaving the hospital worse than I  arrived, so I agreed that Mylah would be delivered naturally and that a c-section was not a option.  That was one hurdle for the day.

The neo-natologist arrived in my room later than morning to discuss what would happen once Mylah was born. She explained that once Mylah was born if she wasn't breathing then they wouldn't make any attempts to resuscitate her because it would be "prolonging the inevitable" and that this wouldn't make things better. I was so upset I wanted to just jump up and leave. I hated myself in that moment because I felt that I should have decided on another location to delivery my baby.  I was upset because I was basically being told that Mylah if not able to breathe on her own or after being bagged would be allowed to die......

My life was turned upside down in a matter of minutes.... I felt so betrayed, I felt so misled. I thought to myself; why develop a birth plan of what I wanted if "what I wanted" wasn't being honored. I felt no one should have the right to tell me how they were going to treat my daughter. After more discussions I had to finally accept the fact that my baby would die if she wasn't strong enough to breathe on her own.  I then expressed that I didn't want to discuss it any further once the decisions were made. I felt that my desire for a positive birthing experience was being snatched from me.  I knew I was in for a long night and already I was ready for it to be over.  I felt my courage and strength deteriorating but soon felt peace come over me.  Whatever was going to happen was meant to be and I wasn't worried about it anymore.

During the discussions with my OB & the Walk With Me team I discussed fetal monitoring during my labor. I was aware that Mylah's heart may not have been strong enough to tolerate labor and that there was a chance that during my labor her heart would stop completely. I made it clear that if this happened I did not want to know because I knew I would not be able to handle it emotionally.  We opted for intermittent monitoring of her heart. This plan worked well, the only issue I had was that each time I had to use the restroom (no bed pans for this momma) I had to unhook the fetal monitoring belts so eventually I just left the monitors off, especially once the labor pains started to intensify because I wanted to walk Mylah down.  Which turned out to be a good decision and because of the number of visitors I had I never really focused on Mylah's heart once the monitors were off.  There were times when the contractions started to intensify I did notice that Mylah's heart rate dropped tremendously but strangely I wasn't concerned about it.

Eventually my contractions started to pick up and I opted for the IV drugs, then the Epidural at 1:30 a.m. but I wasn't really dilated any.  I was able to rest, but at 3:00 a.m. the pain started again. I thought to myself "this can't be real, I thought the epidural was supposed to help me not feel any pain"  For almost a hour I withstood the pain, Juwan wanted to go get the doctor immediately but I wouldn't let him. I got the 2nd shot of medicine in my epidural around 4:00 a.m. and I was only 6 centimeters dilated. I went from 6 to full in a matter of what seemed like minutes and with 1 1/2 pushes she was out. 

Born.. into this world..... into a family that loves her very much!.... to a mother & father who are willing to do what they have to in order to make sure she gets the same opportunities as any other baby. 

There were so many tears of joy during this time. I think once she let out a sound everyone let out a sigh of relief. 

We met some AMAZING people during our hospital stay.  My 2 nurses in Labor & Delivery Carol & Kristin. Both said they'd be praying for Mylah. The nurse who bathed Mylah expressed how honored she was to bathe her and she thanked me for letting her be a part of Mylah's life for the brief moment; she left the room in tears. I wish I knew her name.  Dr. Boyer who was pleasant and calming during my entire stay. There was something in her tone that let me know that Mylah was in good hands.  When we were transferred to the Mother Baby unit, Heather who fed Mylah through a syringe, was so accommodating and a pleasure to meet, & finally Bobbie Anne.   I don't know what to say about this woman. From our first encounter she was pleasant, funny, & caring. You could tell that she actually took pride in her job and loves what she does. Nurses like her are a God send. She took special care of Mylah and I know that they shared a special bond with each other.  She was so concerned about Mylah. She never wanted to upset her or put her through too much. She discussed everything with us.  Her last night with us was very emotional. She didn't want to go and I didn't want her to leave. I felt that my daughter was safe with her. GOD truly sent the perfect person to care for Mylah in Bobbie Anne.

The Walk With Me team has been nothing but supportive. My nurse was PHENOMENAL during my delivery and there isn't anything that I can do for her to thank her enough for assisting in bringing Mylah into my world. 

I still have a lot of fight in me. I've been a little frustrated lately.  Being a 1st time mother is a task, but add to that load; Trisomy 18, a heart defect, lack of cooperation/understanding from medical policy makers, it makes for a pretty heavy weight.  I'm grateful for my husband, parents, sisters, and the gigantic circle of friends & family that have stepped up during this time to help where they can, because the LORD knows I need it.

Mylah is doing well, Monday she had her feeding tube removed and has been bottle feeding ever since.  She's sleeping well & crying even better. I know she has a nice set of lungs on her.  I know that it was GOD who gave me peace in the moments when I felt defeated. It was HIM who whispered to me in the moments when I needed to make decisions regarding my health and Mylah's life. I know it was HIM who carried me during those times because there was one set of Footprints.

We are gearing up for the next leg of this race and I'm running with a wonderful team; Juwan, Mylah, and GOD running as the anchor on our team bringing us down the homestretch!

Sunday, March 25, 2012

Meet the Princess.....

Mylah Roberta P.

Born Saturday, March 24, 2012  5:11 A.M. 

Weighing in at 5lbs 3oz 18.75 inches

Our little blessing from GOD.  She defeated so many odds to get here. 

She still has a race to run, but she has so much love & support from so many individuals who are rooting for her and want to see her win this race. 


I won't write a entry tonight because honestly it's been an exhausting weekend, but I wanted to share our little bundle of joy with our readers because so many of you have been there following this journey from the beginning that it's only fitting that you get to see who you have been praying for! Thank you for sharing in our excitement & please continue to pray for our family!  





 Photos by Bella Baby Photography

Thursday, March 22, 2012

A Letter to My Daughter...


                                                                                    Thursday, March 22, 2012

Dearest Mylah,

The time has come… Finally we will get to meet each other face to face. It’s been months of anticipation that has led us to this moment. I will finally get to see the beautiful blessing that has been growing inside of me for the last 9 months.  I’ve often tried to picture what you will look like. Who will you favor most; your father, myself, or maybe one of your grandparents? What type of personality will you have? How big will you be? What size will your feet be? Will you have a crown full of hair, because honestly the heartburn killed me the entire pregnancy!

It’s been a long journey to this day.  Your father & I prayed for you. Before we knew YOU, we prayed for a child that would bring joy to our lives. We prayed for a child that we could call our own and one that we could shower with love each & every day! God made us wait! He made us wait almost 2 years for you, all the while preparing us for this day.  He began growing you inside of me when he felt it was necessary. 

The day I found out I was expecting you I really didn’t know how to feel.  I’d been waiting so long for you but there was much pain in that time that I thought I would never be a mother.  It took a while for me to fully realize what was happening inside my body. On July 15, 2011 when I went for the appointment to confirm the pregnancy, you were what they called a “yolk sack” inside my womb. There were no physical features that resembled a baby. 

I remember trying to decide if I would tell anyone. I was so excited and scared at the same time. I wanted to tell your father in my own special way but I knew I wouldn’t be able to hold the secret for too long.  I went and bought a baby shirt, card and put the pregnancy test in a plastic bag (LOL). I gave it to him one night after he played basketball. I remember the look of shock on his face when he read the card that said “You’re going to be a wonderful dad”. I’d waited 2 years to deliver this news to him and it gave me so much pleasure to tell him that he would finally have someone to call him “daddy”.

I remember telling your grandparents. Your grandmother (Ya-Ya) screamed so loud when she read the card I made telling them that our family was getting “bigger”.  She didn’t let your Grandpa see the card and he wondered what she was screaming about. He read the card and the look of astonishment on his face is one I will never forget. He was so shocked. Everyone was so happy and I clearly remember seeing your Grandpa with tears in his eyes. They knew how much this meant to us because they had been there for us while we struggled to conceive you.

A month later your Father, Aunt Toya, and I went back to the doctor and we heard your heart beating. It was the sweetest sound I’ve ever heard. It was then that I was able to accept that a baby was growing inside of me.  

I knew you would be a girl from the beginning. No matter how many times I daydreamed about going to the park with my baby, the child I pushed in the stroller and caught at the bottom of the slide was always a girl.

I made it through the 1st trimester with no problems. The only time I got sick was the day I found out I was carrying you.
The time came for us to get the ultrasound that would assess your anatomy. Dr. Walsworth wanted to make sure you were growing like you were supposed to and maybe just maybe if you were in the mood you would show us what you were!

I scheduled the appointment on my 31st birthday, October 19, 2011. I felt that this was the best birthday gift I could have ever received. It was during this visit that we found that you had a couple things against you.  My love grew for you that very moment. That night I researched into what your condition could be. I found that you had many characteristics of a baby with Trisomy 18 but the statistics and stories I saw were so sad that I prayed you weren’t diagnosed with this disorder. The following Monday my worst fears were confirmed and the doctors diagnosed you with Trisomy 18. 

While I researched Trisomy 18 most things that I came across said that babies born with this chromosome abnormality were considered “incompatible with life” and most didn’t make it to their 1st birthdays.  I began to worry and cry.    I prayed for you and was so hurt that doctors were giving us the option to terminate our pregnancy.  In that moment I think you heard the doctors and I think you felt how upset I was so you kicked me. You hadn’t kicked me at all before and I know it was GOD telling me to FIGHT for you.  I told the doctors that I didn’t care about your heart defect, it was still beating strong; I didn’t care about your clenched hands, I knew that meant you were a fighter; your brain defect didn’t matter to me. You were my baby, the baby that I asked GOD to give me. I loved you so much more in that moment and I was ready to put on my running shoes and run this race along with you.

I asked GOD to give me the strength and to guide my steps. 
They said you wouldn’t live in my womb; your heart is still beating, you are moving, and you continued to grow.
They said you would probably come early. As I write you this letter I am past my due date of March 15.

As your daddy & I and the rest of your family prepare to meet you on tomorrow, all I can do is wonder what else have they said you will/won’t do and how will you show them that they are wrong. For all the ones who counted you out because of Trisomy 18, I pray that you can show them that statistics and numbers don’t mean anything.  I pray that the medical community wakes up and sees that babies like you are fighters and that the LOVE that surrounds you helps you keep going.

I pray that GOD uses you remove the doubts from so many.

You are my special baby, my 1st born, my daughter, my little fighter and I look forward to the hour when we will meet so that I can kiss you and say “well done Mylah, you have already made mommy proud”

                                                Love your mommy!

Friday, March 16, 2012

Patience.....

A co-worker told me today that Mylah is teaching me patience. I'm not sure I get the lesson. My due date (March 15, 2012) has come & gone and still no Mylah. She's still moving around and poking her butt out most evenings at 6:30; however she hasn't managed to make her appearance.  She has so many people waiting on her arrival that I feel like we should be on the cover of a magazine.  This waiting game was okay at first, but yesterday on my way to work, I got really frustrated and began to cry.

I realized that I'd built up so much anticipation and planned for her early arrival that I never gave ANY thought to the fact that she wouldn't be here by yesterday.  It's getting very hard to go to work everyday. It's not the stress of the job but the stress of "what people are going to say today". I understand though that people are very excited to meet my daughter so I try to be polite with each response that I give and I remind myself that Mylah is already loved by so many people.

From the beginning of my pregnancy I had planned to work up until I delivered, but never thought I would literally be walking into my job on my due date.  My co-workers are very surprised at the fact that I'm still working everyday.  I feel great so I don't feel the need to ask to be taken off. Once I get home each day I usually lounge around, lately I've been walking a lot.  The house is as clean as it's going to get, plus if I'm sitting at home I may allow my worries to get the best of me.   I feel better being at work, occupying my time & being productive. Its actually therapeutic for me and helps the time pass by. I can honestly say though that I do get irritated each Sunday night that I have to prepare for work for the following Monday LOL.

Another frustration is the fact that my youngest sister,  an out of state college student who has been home since March 3rd, is preparing to go back to school on Sunday and still no Mylah.
It's a sad realization that my sister probably will miss the delivery of her first niece and with the diagnosis I'm just praying that they get a chance to meet each other.  This has been the source of my stress lately. I'm trying to stay positive, but I'm faced with a harsh reality.  I know that Mylah has defied many odds that have been placed against her but I still understand the possibilities and that's very hurtful & scary.

People can tell me every day that I'm strong & that Mylah is going to be fine, but until you've walked a day in my shoes and your are tasked with the decisions that I'm facing  you can never understand what I'm feeling and why I'm feeling this way.

I don't have anymore predictions. I don't know when she is going to come. I don't know what is going to happen and I don't know who is going to be there. All I can do is wait, stay prayerful and ask GOD to give me the strength to deal with whatever he is going to place in front of me.

Sunday, March 11, 2012

Psalm 139:13-14

One of my fellow Trisomy mothers posted this video on her Facebook page.  I love the song and the video brought me to tears. I cried when I saw what a baby is able to do at 17 weeks, because 2 weeks later was when I found out about Mylah's diagnosis. I cried at the thought of the diagnosis, I cried at the thought of her not making it, I cried because I wasn't sure I was emotionally capable of caring for a baby with a disability that I gave abortion a thought but I'm so happy that GOD ordered my steps.

There was a time when I thought I would never be a mother, there were days when I thought I would never experience the joys of being pregnant, Oh but GOD! He had a different plan for me.  He knew when it would come, He knew how it would happen, He knew what I could endure, He designed her to be the way HE wanted her to be & I'm so glad that HE picked ME to be HER MOTHER.....

Psalms 139:13-14
13 For you created my inmost being;
   you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well. 








Saturday, March 3, 2012

The Countdown....

is here... I'm about 12 days away from my due date of March 15.  All we do is sit & wait, & wait and sit. Wait for Ms. Mylah. How and when it will happen is what consumes my thoughts now. Will I be at home or at work? In the evening or during the day? How will this new chapter in my life begin?

I've cleaned my desk off at work to prepare for my departure. The house is as clean as it's going to get. I mean at 38 weeks I tackled the basement which was a HUGE assignment so I'm pretty proud of myself. My bag is packed, actually it's been packed since mid Jan because we were told that Trisomy babies tend to come early, but as you can see Mylah is proving to be not your ordinary Trisomy 18 baby. Her room is decorated and ready for her arrival. Her closet is full of clothing and her dresser drawers are full. She's actually kicked her father out of his 2nd closet.  We have so much pink, orange, and butterfly decor that our house has felt like Spring since January!

I can honestly say that I've had a pretty good pregnancy despite the Trisomy 18 diagnosis. No morning sickness, no major weight gain, my hormones were pretty much in check, my irritation level is just starting to increase.  I just focused so much on Mylah and getting her here that anything else wasn't really important.

The 9th month is the month to prepare yourself mentally and realize that soon there will be another person in your life. It won't just be Juwan & I anymore. It's been the 2 of us for the last 8 years. Soon we will become a "family". The 9th month brings the reoccurring questions that actually irritate me each time their uttered. Last week I wanted a shirt that said "It's a Girl" "March 15" & "I'm working til my due date". Month #9 also comes with the sleepless nights. Most nights I lay in bed just thinking. My thoughts just soar about Mylah, our life, the delivery and the future.   There is no way to prepare yourself for a situation like this. No books, no websites, no pregnancy magazines, nothing.
All we have is our faith in GOD and our strength which is what has gotten us to this point.

March marks Trisomy Awareness month.  Due to the pregnancy and my due date drawing near I can't do as much as I would like to do for Trisomy Awareness month, but I'm already thinking of planning fundraisers for next year! I think that because of Rick Santorum speaking about his daughter; who is a Trisomy 18 child who is 3! it has brought so much awareness to the cause. I intend to do my part so that our children are treated with the dignity and respect they deserve.

I asked my mother to come and photograph Juwan and me again in our newest Trisomy shirts that I ordered from Cafe Press. As before she did a wonderful job and I love how the pics turned out.


We are doing pretty good, everyone is anxious and excited. Everyone is waiting for "the day" & right now that's all we can do is wait.