Tuesday, April 24, 2012

1 Month Milestone....

Today marked the 1 month birthday for our precious baby girl Mylah! She has survived a full month.. Longer than the statistics said, longer than some doctors gave her, because she's currently on schedule with what GOD says.

She had a 2nd opinion with another cardiologist last week. The main issue is weight, weight, weight.  Weight has always been a issue in my family somehow, but it's never the lack of weight. Mylah has yet to get back up to her birth weight of 5lbs 3oz. Surgery may be an option once she gets older, but Mylah must gain some weight in order for her to be able to stand a chance against the heart surgery.
Once she gains weight, we can then consider the options we have in regards to her heart defects.

I find myself crying some days because I'm not sure what I should do.  I look at her face with those 2 big eyes gazing up at me and my heart hurts for my daughter because I can't FIX her.  I always ask myself what if the decision I make is not the one that's right.   It's so easy to say "well, cross that bridge when you get to it" but truth of the matter is I have to think about the options now. I can't wait until she gains weight to start to think about if heart surgery is what we want for Mylah. Heart surgery on a perfectly healthy BABY is risky. Add to that equation Trisomy 18 and a very complex heart defect and the game changes.  We must think about the risks & complications associated with a major surgery.

I am advocating for Mylah but I must consider whether the time she will spend in the hospital's ICU is going to be worth it.  Do I want her in the hospital for a month or at home for an extra month?  Is she going to be in pain afterwards?  What if the surgery causes more pain for her in the long run?  What if the surgery isn't successful in closing the holes in her heart? All these are questions that run through my brain each day.  It's a hard decision and I'm hoping we make the right one for Mylah.

I was mad at GOD recently... Ashamed to say but I was.  My feelings get hurt each time I look down at my small baby with her feeding tube, who some haven't given a chance.   Some people say I have a big caring heart.  I look at Mylah and say wow isn't it funny, I have this huge caring heart but my baby's heart is broken. I didn't smoke, drink during my pregnancy. I steered clear of caffeine & fish.  I took prenatal vitamins for 2 years but my baby is the one who is sick and it's a sickness that can't be cured. 

While most new mothers are concerned with what day care they are going to send their babies to, I have to worry about if either Juwan or myself will have to quit our job to take care of Mylah because there is no special needs daycare that I can send my daughter to while we are at work and I can't entrust a regular daycare facility to give Mylah the care that she needs.

I was in the car the other day and I thought "WOW how my life has changed". It used to be Juwan and me; coming & going as we pleased, going to bed whenever we wanted, jumping up at the drop of a dime to go to dinner, now all that is changed. Most families take about 2 months for their lives to return to "normal".  My normal has changed. I don't really feel comfortable having Mylah out in public.  I don't feel comfortable leaving her with anyone other than her father no matter how much help we are offered.  I don't have any desire to leave the house really, it just doesn't feel right.  I'd be lying if I said I didn't go through the motions in my mind and ask myself if I had it to do it over again would I make the same decision; I never work up the courage to answer the question I ask myself, because on my more emotional days, I'm afraid of what the answer would be. 

I want to be with her every second of every minute.  I hate all the doctor & nurse visits.  All the exams, echocardiograms, scales, blood pressure machines, the constant phone calls from the automated systems reminding me of yet another appointment. I just want to spend time with Mylah. Just Juwan, Mylah & I.  I just want one week where there are no disturbances, no appointments, no phone calls, no follow ups. I just hold her sometimes. I lay her across my chest where she seems to be most comfortable. I smell her hair. I kiss her cheeks. I rub on her legs. I just cherish her and I ask GOD to lead me in the right direction with the decisions I make so that I will be able to give her more kisses, smell her hair again, rub her legs more and look into those big brown eyes and know that it's one less worry.

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Sunday, April 15, 2012

Broken Heart....

The link listed below was posted by a fellow Trisomy mother that I have had the pleasure of connecting with through the Trisomy mothers group on Facebook.   Please read and educate yourself on what Trisomy families have to endure each time we "trust" the medical community to service our children who may be ailing.

I wish I had known about medical futility policies before I delivered Mylah, but I can't go back. However, I can go forward and hope that this post reaches someone who needs it.  There have been so many mothers who have educated me and given me direction during the first part of my journey, it's only right that I reach out to educate others who may be traveling the road I previously walked.

I want to ask these policy makers "What right do you have to determine who gets to live and who gets to die?", "What right do you have to say what's considered a "quality" life", "What right do you have to determine that the child would be better off by being denied medical care that could possibly prolong the life this child has been given?"

During a recent cardiology appointment I was advised by the physician that Mylah's heart defect was "huge" as he described. As he went on to detail the defects of her heart he indicated that he would not operate on her.   When I asked "why?" he proceeded to advise "because it won't make things better", he would prescribe her medications to make her comfortable.  He expressed that he wished it was something that he could do & that he was "sorry". I told him not to be sorry and that he could pray for my baby.

During meetings with physicians I have been told this same sentence a number of times. It's actually to the point of annoyance. What exactly won't get better? I really think that the physicians that I've spoken with don't really understand the actual QUESTION. There is a difference between HEARING and LISTENING.

I think that the physicians don't really get my point.

I know that Mylah has a chromosome abnormality that cannot be fixed. There is no medication, no vaccine, no type of therapy to fix what she has.  Mylah has a AVSD & a VSD of the heart.  If left untreated it could lead to death by heart failure. Yes, the description of her heart defect was told to my family and I almost 11 hours after Mylah's birth. Being told that once the blood in my baby's heart started to mix and her lungs begin to fill with fluid it would be difficult for her to eat. She would start labored breathing and her death would be something that would take a few days to complete; it wouldn't be sudden.  The news drained the happiness from the room. I cried, Juwan, my sister Toya, & my mother cried, my father sat silent.  Such a happy moment; she had survived being in my womb, she survived labor, She was breathing on her own and now, at THAT moment being told my baby who had since defied so many odds, would die of heart failure.

What I want the physicians to understand is that I'm not asking for them to fix Mylah's Trisomy 18.  I want them to fix her heart. Give her a chance. Don't count her out because of her Trisomy 18.  If the holes in her heart can be repaired then that gives her a chance at life and she deserves just that. Trisomy 18 should not be the "Do Not Disturb" sign on my child's life.

The cardiologist who told me that he wouldn't fix Mylah's heart really struck me. Not because he wouldn't operate on my baby, but because he greeted me by saying " God Bless You". I had never experienced a blatant acknowledgement of GOD from a health care professional up until that point. Most only said God Bless You or I'm Praying for You after they'd realized that we believed in GOD. After he gave me the news he asked me to meet him in his office so that he could give me his findings to provide to Mylah's pediatrician.  When I walked into his office I was ataken back. His office walls were covered with pictures of babies, children, and young adults. All his patients that he operated on. The walls were like a timeline for some faces from birth to adulthood.  Pictures and letters thanking this physician for fixing their hearts which were at one point broken. One young lady explained that she was going on to college and thanked the physician for allowing her that chance.   I began to feel sad. I knew that Mylah's face would never be added among the other children who had been given a chance at life.  I noticed faces of  Down Syndrome children who he'd operated on. Down Syndrome is also known as Trisomy 21. What made those Trisomy children any different than Mylah?

As we sat in his office, a Hebrew song played a lady sang with a calming angelic voice.  The music soothed me. I knew the words she spoke had something to do with GOD.  The doctor turned around in his chair and faced me. Once again he said that he was sorry and that he didn't know why GOD does the things he did.  He expressed that Mylah was a beautiful, precious baby and that she was lucky to have me as her mother.  I began to cry. I told him that she defied odds and that I served a GOD who performed miracles. He pulled a handkerchief from his pocket and dried his tears.  He then asked if he could pray for her.  In Hebrew and English he prayed for Mylah. I thanked him and he let me sit in his office until I was ready to leave. I knew from his tears, and from his greeting that he wanted to help Mylah.  I knew that his faith was strong in knowing that GOD had Mylah in his hands.  But his affiliation to the hospital would not allow him to operate on my baby.  I knew that the hospital had a very biased opinion as it related to treatment for Trisomy 18 babies and heart surgery is not a option at this facility for Mylah.  I needed to look elsewhere.

I started looking in other places for physicians who would treat my baby as they would any other baby without Trisomy 18.  I found some solace in her pediatrician; who after the 1st visit referred her for specialists visits. One referral being to the cardiology department at one of the most renowned hospitals for children in the state.  Our initial consult is set for this Friday.  As we make the 45 minute drive to our destination I ask that you keep our family in your prayers.

I want Mylah to be given an opportunity to live. To live the life that has been given to her. I don't want her to be handicapped by her Trisomy 18 diagnosis.  If the medical community continues to handicap our children just because of their diagnosis they will never see what our children are capable of. Then how will we be able to move forward with trying to better the treatment and care given to our Trisomy children.  "Incompatible with Life" this was once the description given to babies with Trisomy 21-Down Syndrome & look how far individuals with Down Syndrome have come.  They were given a chance, physicians listened, parents spoke out, & their children fought.  Hopefully, one day soon we will see a change in the way our Trisomy 18 & 13 children are treated.



Click the link below to read about others are fighting to have hospitals disclose their Futility policies to patients.

Rebekah Faith - Redefining 'Incompatible With Life': Medical Futility


Tuesday, April 10, 2012

Birthdays...

mean so much more now than ever.  My family and I have always celebrated birthdays, they are sort of a big deal where I come from. No matter your age you get cake, ice cream, a card, gifts and maybe a balloon or 2.  I love birthdays because it's celebrating the end of one year and the beginning of another.  It's like starting over again. Each year the Lord blesses you to age another year you get a new start, it's just up to you on how the year will turn out.

When I was pregnant I wasn't sure how long Mylah was going to be mine. During about my 7-8th month I made the decision that as long as she was on this earth, we would celebrate the milestones of her life. 1 week, 1 month, 2 months, etc. & a HUGE party for her 1st birthday! Yes I'm already planning!

I know that as some people get older they start to remain the same age for years. Celebrating 35th birthdays for about 10 years.  I remember being so scared to turn 30. I thought "life" was over. Maybe because I hadn't accomplished the things I had set to accomplish and probably because I wasn't really where I "wanted to be" at 30.  Society puts a stigma on 30 and many women do dread leaving behind their 20's. Turning 30 wasn't bad at all, I actually felt more mature and refined at 30.  Although I didn't have the restaurant I wanted, the number of children I expected to have, and I wasn't at a place in my current job where I thought I should have been, I had to remind myself that I have so much more than many my age and older don't have.  I have a house, a wonderful job, a great circle of friends, a beautiful family, and most of all a loving husband and that's good enough for me.  I still have time to accomplish and obtain all the things that I wish to have. I shouldn't stop "Living" just because I'm getting older.

With that said, there is no need to start to deny what age I am, to remain 31 for about 4 more years, or to live in the past.

The birth of my daughter has shown me that every minute of life should be cherished and that you must live in the moment. Learn to appreciate every milestone & every achievement.  To turn 32 in October will be a great accomplishment and a blessing because many won't make it to that age.

For Mylah each minute is a accomplishment.

She defied odds to get to where she is today; 17 days old.
She wasn't supposed to make it out of my womb;  remember her "fate was sealed".
She was supposed to come early; I had her at 41 weeks and 2 days.
She wasn't supposed to survive labor; She was bagged 2 times and then took her first breath and has been breathing on her own since.
She wasn't supposed to leave the hospital; She was discharged home on March 25, 2012.
She wasn't supposed to make it past the first week of life; She turned 1 week on March 31, 2012 at 5:11 am and we were up to celebrate her LIFE.

Mylah has shown me and I hope will show others that you shouldn't stop living too soon. 

She is now 17 days old. We will continue to celebrate her LIFE each month that HE allows her to remain with us.  April 24, 2012 is a date I am looking forward to; her 1 month birthday.
Mylah is a strong little girl and she still has a race to run, but I know she won't mind stopping the race to celebrate her Birth Day(s) along the way.

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Celebrate your birthday no matter what age you are turning.  Be thankful for the age you are celebrating because there is someone who would love to blow out the candles on that cake.