Monday, November 28, 2011

Footprints.....

When I was younger, I can recall being over my great-grandmother's house & seeing a copy of this poem in a picture frame on the wall. Being very young I wasn't able to grasp the full meaning of the poem.  I can remember the poem being very popular and many relatives & friends homes having the profound words displayed on walls, in curio cabinets, printed out folded into bibles; no matter where the poem was found it meant something to all those who carried it. 

Not until October 19, 2011 did I really come to understand how much power flowed between the sentences of the 200 word poem.  

I'm posting this poem as confirmation; confirmation that HE's always there, but mostly importantly that HE's there when you need HIM. When you're wondering; How you made it through, How you kept going, What guided you during the toughest time, Where you got the strength to go on, It was HIM & I'm THANKFUL that HE carried me & continues to carry me when I need HIM most!


Thursday, November 17, 2011

Approach With An Open Mind....

That's what I had to do today to prepare for this meeting. I'm so glad my mother convinced me to schedule this meeting, it was NOT what I thought it would be.  I thought these ladies were coming to my home to discuss how they would prepare us for the possible death of our child. I imagined the meeting would be cold, sad, & somber, it was the total opposite.  All the questions I had in my last blog posting were answered. The ladies were reassuring, inviting, welcoming, calming, & so pleasant to meet with. It's amazing how God brings the people you need into your life.

We will get the support & advocacy that I'd been hoping for.  Options were discussed. They will advocate for us so that the delivery is the experience we hoped it could be. They will help us create memories. They spoke about BOTH outcomes; Mylah's possible death & the best of all Mylah's LIFE. Which is something I felt hadn't been acknowledged. 

I wasn't really sure what was going to happen today, but when they left our house I felt a weight lifted off of me.  They helped me realize that everything I'd been feeling was valid. They stressed preparing for Mylah's birth so that the process is as easy as giving birth could be, but acknowledged the extras that come with delivering a child with Trisomy 18. They encouraged me to get the 3d ultrasound I had planned to do in Jan. They advised having my baby shower to celebrate Mylah & her life.  All things that I was so unsure about.

Today's encounter was a total surprise, but the anxiety that had been building since I scheduled this meeting has gone away and has been replaced with calmness.

Additional meetings will take place to continue preparing us for this journey,  but I'm happy that there is someone who will Walk With Me.

Tuesday, November 15, 2011

The Other Plan....

During our meeting with the fetal medicine specialists, Genetic Counselor & Social worker we were advised that because Mylah was diagnosed with having Trisomy 18, our information would be forwarded to a hospice program to assist in her transition.  The representative from the program Walk With Me contacted me last week wanting to set up a meeting.  Honestly, I really didn't want to meet with her, but my mom convinced me to  meet with them to see what was being offered to us. 
                          The appointment is set for this Thursday.

I don't think there is a proper way to prepare for this meeting. When I hear hospice, I think of the patient being a elderly person or individual with a terminal illness that they've been battling with for years.  I never thought it would apply to the precious baby girl that I'm carrying. 

The docs at the hospital are so certain of Mylah's demise. Their medical statistics and/or experience has led them to believe that babies with Trisomy 18 won't live very long if born alive. However, my research thus far has shown me that there are children LIVING with this diagnosis. Many have made it way past the first hours of being born.

While trying to "mentally" prepare for this visit & what will be discussed I thought of some feedback that I could provide.   There are programs & support groups for parents to help prepare for the loss of a child with Trisomy 18.  During our meeting we were given the book; A Time to Decide, A Time to Heal written by parents whose children had birth disorders such as Anencephaly, Trisomy 18, Down Syndrome etc. We were advised that there were funeral homes that would help with the memorial arrangements some free of cost. Cemetaries with a Babyland where Mylah could be buried. A suggestion of cute little teddy bears that would hold her cremated remains.  The hospital  has a program that would cremate her for free. We were even advised to join the parent grief/loss support group, but I haven't experienced a loss & I'm not grieving.

Over the last couple weeks I began thinking... What about the OTHER plan? The Life Plan?
I began to jot down questions & concerns that I had, which I'm sure plenty of other mothers before & after me have thought of.

So my question's are.....
What about the babies who survive? 
   What about the babies who go home with the parents? 
         What about the children who make it 6 months, 1 year, 5 years, 7 years? 
                          What services are offered to THOSE parents...  
My answers..... 
How about a list of pediatricians area who are willing to manage the care of a child with Trisomy 18? What about the cardiologists to examine the heart defects?
Where's the list of Trisomy 18 parent support groups? You know, the parents who are living with, caring for & loving a child with Trisomy 18.
Where are the social workers & home care nurses who help the family transition into home life with a Trisomy 18 baby?  What about THOSE parents? The ones who have been told their baby is going to die, but the child defies all odds & survives.

I've come to understand that the medical world usually prepares you for the worst case scenario. I think that they should practice a little more in preparing you for the worst outcome & the outcome nobody expected.

I have a feeling that Mylah is going to be the Trisomy baby nobody expected & it would be nice to have some help along the way.

Monday, November 14, 2011

To Shower or Not To Shower?????

That's my dilemma... Do I have my baby shower or not? Time is winding down for me to make my decision.  Each day my decision changes.  There are so many things that factor into my decision.  I never imagined that I'd be faced with making this decision. For years I've been planning my own baby shower. Yes! planning my own, it's my decision & I won't have it any other way.  In July when I found out I was pregnant, I went into party planning mode. Referencing the MANY bookmarks, pics, notepads that I had acquired over the years while planning other parties.  Those closest to me know that I love a party & I'd been waiting so long to celebrate becoming a mother.  I remember coming home after the confirmed Trisomy 18 confirmation & erasing the Baby Shower bookmark folder housed on the toolbar of my browser, it was just too painful.

Now, each day I find myself making a different decision on whether to have our shower or not.  I feel  if I don't then I'm just as cold as the physicians who told us "the baby's fate is sealed" &  she should be celebrated. Then I feel if I do & God decides to take Mylah after the shower then I'll be stuck with so many painful reminders; toys that she'll never play with, clothes she'll never wear, a stroller she'll never sit in & a crib she'll never sleep in.

One of my friends suggested having the shower after she arrives, but I know as a first time mother  & with Mylah's condition a shower will be the LAST thing on my mind. I'll only be concerned with spending every waking minute with her.
One of my thoughts was if we have the shower & God does call her home, then we would donate all the gifts to a charity in her name.  I hate feeling like this

I'm still unsure but I'll continue praying for guidance.

Wednesday, November 9, 2011

New Arrival....

Today we received a gift. A Fetal Doppler. A group of my friends at work gave us money to purchase a Fetal Doppler, so that we can listen to Mylah's heart whenever we want.  I'm so happy to receive this gift.  I've already listened to her heart & it gave me so much joy.

Been having some rough days lately. The tears never seem to stop flowing. I got out this weekend for a little retail therapy with my mom. It very hard trying to make myself enjoy something that I once loved to do, but of course my priorities have changed. 

It felt like at every turn there was a woman who was pregnant happily moving about through the mall.

While we were trying to get pregnant I would look at pregnant women or women with their children & wonder if she is a good mother, does her child feel loved, does she know how lucky she is.
Once I got pregnant, the questions changed; "I wonder what she's having?", " I wonder if she's excited", I wonder if I'll look like her the further I go into my pregnancy?". Now with the Trisomy 18 diagnosis the thoughts again have changed, I just find myself staring; staring at the bulging bellies of the mothers in the shoe department, with not a care in the world.  Staring at the mothers filling up their baskets in the children's department, preparing for the arrival of their newest baby. Wondering if I will ever have that happiness.

I had to force myself to buy Mylah some cute onesie's because I felt I had the right to, but felt guilty about the purchases later on.  Wondering if I was setting myself up for a heartbreak, will she ever get to wear them?  or will I have to make the painful trip to return them because she didn't make it.

It's very hard to stay strong & positive when the future is so uncertain. It's hard to put up a facade of happiness when deep inside the pain is so strong.  We've gotten so many cards & so many have reached out to us its amazing!   I find some solace in the many Youtube Videos & blogs from the parents of children who have Trisomy 18, 13, 21. I admire their strength & determination. Though most of the children in the videos & blogs have passed on to heaven, the time the parents shared with the children is priceless. I just hope I can be as strong as those parents have been.


Here is one of the videos that really made me smile & cry(tears of joy). It's inspiring & showing how these children have beaten the odds!


  

Sunday, November 6, 2011

Mylah's Story

1 Samuel 1:27 (NIV) "I prayed for this child, and the LORD has granted me what I asked of him"

I'm sharing this story so that it may help others going thru a rough time.  Please don't feel sorry for us because sorrows aren't what we need, we are rejoicing & praising God for giving us life.  We ask that you pray for us as we continue this journey.

Oct 27, 2011

"They Call Her Baby"

They call her baby
We call her Mylah, Mylah Roberta Perkins
I am her mother
Juwan is her father & she is our child.

Most of you know Juwan & I have been trying for a child for almost 2 years. It had been a time of up & down & very hard mentally & emotionally.
So you could understand the excitement & joy that we experienced once we found out that we would be expecting our first child in March 2012.
We prayed for a child & God blessed us with our hearts desire.
The pregnancy has been going great, better than I ever expected.


There has been a lot going on this last week regarding our unborn child.
Wednesday we had an appt to have an ultrasound to make sure our baby was developing as he/she should. We also hoped to find out the sex. Surprisingly during that visit the doctors found some things on the ultrasound that alarmed them. A heart defect & a cyst on my umbilical cord right at the baby’s stomach.  We were at the office for about 3 hours having ultrasound after ultrasound. This news was a total shock but we were praying for the best outcome.

The physician advised us that these 2 things found were consistent with possible birth defects that could mean a chromosome abnormality (such as Down Syndrome) and a amniocentesis was recommended. But how could the baby have a heart defect? The heart was beating so strongly & there was nothing seemingly wrong with the rhythm.

I’d been given the opportunity to have a amniocentesis done earlier in my pregnancy but declined because if something was found there would be nothing that the doctors could do to fix the problem, but now I needed to know what was going on with our child. The amniocentesis & a meeting with a genetic counselor were scheduled for Thursday & a fetal echocardiogram was scheduled for Monday morning to focus only on the baby’s heart.

There was a 3rd finding in the ultrasound that the physician advised us not to worry about because the baby was still young; clenched hands. Usually babies in the womb open & close their hands with movement, but our baby only held tight fists. After taking all of this in I became an emotional wreck, I had not prepared myself for this news, what parent would?

That night I spent a lot of time on the internet researching birth defects for babies with clenched fists. I came across something called Trisomy 18 or Edwards Syndrome. The information was very shocking & was something I prayed my child did not have. The children were deemed as incompatible with life with a slew of health problems. I read how most children were born stillborn & if they were born they didn’t live very long; some weeks, some hours. I read about how most mothers given this diagnosis decided to terminate the pregnancy.  Terminate the pregnancy? A late term abortion to kill my baby? I wasn’t sure if I could give birth to a child with all these problems and I thought I was firm in my beliefs regarding abortions.  I continued praying.

Thursday my mother & I arrived for the meeting with the genetic counselor who explained chromosomes & birth defects. I could only stare into space & wonder “How did I get here?” She assured me that chromosome abnormalities were not the fault of anyone and that Juwan & I did nothing wrong. She did say that we had a couple things working in our favor & one was the baby’s size. She said the baby was at a perfect size & was growing normally.

The amniocentesis was a painless procedure. Amniotic fluid was extracted from around the baby & would be sent to a lab for testing to check for any chromosome abnormalities. The results would be back Friday or Monday at the latest. I also had another ultrasound, during which the tech advised that our baby was a girl. The baby turned to the ultrasound screen & her hands seemed to motion thumbs up.  She would be called Mylah.

Friday, I did all I could not to be by the phone I kept myself as busy as possible, & the phone call from the hospital never came. I had feelings of both disappointment & relief. I could enjoy my weekend. I continued praying asking God for a miracle & to protect my unborn child and also to give me strength & provide direction for what was to come.

Saturday, we went along with our gender reveal party, which was something Wednesday I was against but my husband & father encouraged me to go on with my plans.  Everyone enjoyed themselves & it was revealed that Baby Perkins was a little girl.

Monday came & it was time for the echo-cardiogram. While waiting for this appointment I called the genetic counselor to make her aware that I would be at the hospital that morning in case she tried to reach me with the results of the amniocentesis.

The echo-cardiogram was a long procedure, basically an extra long ultrasound only focusing on the heart, on Mylah’s heart. There it was, that heart beating strongly & in rhythm, I thought what defect? I was told to go to the bathroom to see if Mylah would switch positions for better views. While in the restroom, I had a conversation with Mylah, I asked her to unclench her hands & to move around for mommy.
After the echocardiogram & other ultrasounds were done, the doctor hit us with another blow.  Mylah’s brain was not developing properly & there was something missing. My child, my poor daughter what was I to do.

The fetal medicine doctor wanted us to speak to the genetic counselor while we were there so they placed my mother, husband & I in a room. Then the phone call came and my worst fears were confirmed. The amniocentesis FISH test confirmed that Mylah did have Trisomy 18. A 1 in 5000 chance & it was my baby.  The genetic counselor scheduled a follow up visit with her & a fetal medicine physician the following day.

I don’t think I’ve felt so much pain in my life. The baby I’m carrying had been diagnosed with one of the more severe chromosome abnormalities that a baby could have. I spent the rest of the day crying & in pain. Nothing could comfort me. I kept asking why my baby? I would have been a good mother. I later resented those words, because she wasn’t dead & I was still her mother.

Tuesday, we met with the genetic counselor, a social worker & 2 Fetal Medicine specialists from the hospital. They explained the findings to my family & the options that we had with this diagnosis.
We could carry on with the pregnancy until Mylah delivered, but there was a possibility that Mylah would be born stillborn & that if she was born alive there was a chance that she may only survive for a short time. They explained that most babies with Trisomy 18 don’t live past the first year of life & that if they do there would be many problems with her.  If we decided to carry on with the pregnancy we would only be given prenatal care, there would be no fetal monitoring, no listening to the heart, no more ultrasounds to check on the baby even during labor because as it was said “the babies fate is already sealed”. I was hearing correctly, they were giving up on my child before she even got here. Up until that moment I hadn’t felt Mylah kick at all, just flutters. After the doctor uttered those words to my family, my baby kicked, a nice swift kick from the long legs which resembled her father that I had admired in the ultrasounds. She let me know she heard those words.

The other option was to terminate the pregnancy with one of two procedures. One being induced labor & giving birth to a child whose heart would be stopped before she entered the world.  The heart; that strong beating heart.

Right there I knew what I had to do the option of termination was a thought a few days ago. I prayed for guidance.  Browsing the internet over the weekend I came across many families whose babies had survived labor & delivery, many made it months, some made it years & are still living. Who was I go give up on my baby just because science said so?  We had prayed for her, we wanted her, we asked God for this baby. She is our baby.  She has a head, a brain, a body, 2 legs with feet & toes, 2 arms with hands & fingers, that heart, strong & beating & those clenched fists which confirmed Mylah was a fighter & as her mother I was going to fight the fight with her.
I advised the doctors that I didn’t care about heart defects, brain defects, clenched hands or flat feet. I saw a heart, a beating heart, one that GOD gave her. He gave her life and I was no one to take it from her. Terminating my pregnancy would be killing my child. The child I asked God for and I would carry her until God decides to take her from us.


This is going to be a long, emotional, journey. We are staying prayerful & trusting in GOD & his abilities. He has given us the best gift that parents could receive and that is the gift of life.   I won’t give up on my child like others have.  She is my child & I am her mother, Juwan is her father & she is a fighter and I will fight for her as long as I can.

I want to thank you for your support & encouraging words. Please keep my family in your prayers as we travel this journey to meet our daughter, Mylah Roberta Perkins.

Intro-

I've decided to start this blog because it seems like sharing OUR story has not only helped me to release some pain, but it may help others in their journey as well. I was led to start this blog by the numerous blogs out there of the families who have also been where we are.  I've admire all the families who have shared their stories. Their stories have given me so much strength and have inspired me in so many ways. 

Please feel free to leave a comment, quote, scripture, or poem if you feel necessary. 


As always I ask that you continue to pray for our family as we travel this journey!