Monday, December 31, 2012

2012.......

This about sums up how I feel about 2012....

I love you all!
Thank you for your support, encouragement, concern, care, kind words, prayers & most of all your FAITH!


video

Sunday, December 23, 2012

Unexpected Stay

Sorry for the delay in posting.

Needless to say there has been so much that has happened since my last post.

Mylah developed what I thought was a cold 2 weeks ago. It started with a fever and runny nose which we attempted to treat with children's Tylenol and Vicks. 2 days later she seemed fine, still her happy little self. Then 2 Saturday's ago while she was swinging Juwan noticed that Mylah was crying. I thought she may have just been upset about something, but when I looked at her I noticed tears in her eyes. I was alarmed because Mylah almost never cries and when she does there aren't ever any tears. So as I watched the tears fall from her face I knew something was wrong.

She continued to display discomfort all day long. She could not be consoled. She would take little cat naps, but would wake up crying and obviously in pain. I know that if we could actually hear her voice those cries would have been very loud. I fought with myself about whether to take her to the hospital or not. I tried gas drops a few times (because I know what gas pains feel like) but they didn't help any. I stopped feeding her because I thought her stomach was hurting. It didn't help. Finally at about 9:00 Sunday night I made the decision to go with my gut and punch it up M14 to Ann Arbor, MI.  We arrived at the hospital and walked into an empty ER.  Right in, straight to the back. Rectal temps, continuous explanation about why Mylah was brought in. Questions about her meds. As the hours went on I knew that we weren't going home. How long we would be there was the question.  I didn't want to be admitted. I honestly thought Mylah had gas and that the nurses would look at me crazy because we drove 30 minutes in the middle of the night for them to tell me my baby had a bad bout of gas. But that wasn't it.

I explained to the nurse that Mylah's home care nurse had mistakenly ripped her G-tube out about a month ago and that it hadn't been right since. I didn't know if this was the source of Mylah's pain. The gauze that we wrap around her G-tube was soaked with formula which was unusual.  They vented her G-tube in an attempt to relieve her stomach of any air and a bright yellowish fluid began to drip out. I assured the nurse when my sister vented the tube before our arrival that it wasn't any color to the fluid.  An abdominal X-ray revealed no bowel obstruction or illeus.  Then we were being admitted. They wanted to monitor her for a day or so to try and figure out what was wrong.

By the 4th day it was confirmed that Mylah had contracted a bacterial infection called Clostridium difficile or "C diff" for short. Where and how she contracted this infection we aren't sure, but we were sure that we would change our everyday habits to prevent this happening again. She was given a antibiotic to help and we saw improvement. That Friday we were released back home. I prayed that we wouldn't have to spend the holiday in the hospital. 

As Mylah's 1st Christmas approaches I'm eagerly awaiting. Although she doesn't know what the holiday means, it's exciting to be able to celebrate with her at home because it's another milestone.  She has her own little tree and even got a special ornament from a new friend.  We told the adults in our family this year we wouldn't be spending money on gifts for adults. 


Months ago, while still at Mott I thought about the families who would be spending Thanksgiving, Christmas, & many other holidays within the walls of the Mott ICU or the Moderate Care Ward.  I thought about all the families who wouldn't wake up Christmas morning in their own beds, instead they would be waking up to the sunrise over Ann Arbor in either the Ronald McDonald house or the "plush" hospital sleeper sofa inside their child's room. I pictured the families who wouldn't be surrounded by their families & friends at the dinner table with all the fixins for Christmas dinner, singing Christmas carols, watching holiday classics and getting cozy by the fireplace.  Thoughts of those who would be bedside by their children as they fought against whatever ailment had them in a place so far from the comfort of their own homes and many from their families.   I made the decision that we would donate to the hospital.  I couldn't imagine the feeling of being away from my home & family during Christmas and many times there are great sacrifices that families have to make when a child is in the hospital for an extended period of time. Most families have to make the hard decision to reduce to a single income household and that is an enormous amount of stress on a person.    


I know the feeling you get when you spend days in the hospital, developing relationships with hospital staff, trying to find new places to venture out to and longing to be where your heart truly is. I'm praying for all of those who find themselves away from their loved ones this holiday season. I'm praying for the mother's who will be hovering over their child's bed as the alarms inside the ICU beep continously. I'm praying for the father's who stand strong by their son's as they recover from their latest round of chemotherapy. I'm praying for the grandparents, who will travel from afar just to come kiss the foreheads of their beloved grandchild who is breathing with the help of a massive machine.  Our brief stay a few weeks ago reminded me how easily things can go from good to bad and in a matter of seconds & your life changes. 


I know that this year I have been truly blessed and I'm forever grateful for GODs covering over my family and myself.  


I pray that each person who reads my blog has a blessed Christmas and that you are surrounded by those you love because I intend to surround myself with the ones I love most! 


GOD Bless you all!!!  


Wednesday, November 28, 2012

Thanksgiving....

This holiday weekend was one of so much JOY!

Thanksgiving has a whole new meaning to me. Growing up I have so many happy memories that are associated with the holiday season. Memories of family, love, and fun!
I cooked a few things this Thanksgiving. Peach Cobbler, 7-Up Pound cake and Chicken & Dumplings (from scratch-there's no other way).  I remember the taste of my grandmother's chicken & dumplings. When she passed, I was 9 but didn't know the profound effect that she would have on my life. We spent every weekday with her when I was younger and I remember that she always fed us very well. She was a great cook and I know that I draw from her, especially during the holidays.

My mother has always prepared our holiday meal. As I've gotten older I help with some of the things that I'm able to prepare. I have a vivid memory of waking up on Thanksgiving to the smells of the holiday. Hearing the jingle and ring of Christmas music playing on the radio. Walking downstairs to foggy windows and seeing my mother cooking in the kitchen. Those foggy windows bring me so much happiness because they mean so much to me. They are the preview of whats to come; Family & Fun.

So for the past week or so we've experienced just that.... Family & Fun.

Mylah attended her 1st birthday party since being home from CS Mott. She did very well. No emergencies or panic situations. I think it was me who needed the chill pill. Most people at the party already knew about Mylah and have been supporting us on this journey. There were a few parents who gave us some stares but in a good way. It's always so funny to see parents interacting with their children and when we come in with Mylah their demeanor changes.  I could tell some wanted to ask questions, but refrained.

Last Sunday, Mylah and another phenomenal little girl were featured in my mother's church Transformation concert.  At the end of the concert a song called He's Able by Deitrick Haddon was played and the stories of how these 2 miracle children defied the odds and stunned physicians with their perseverance.  I missed the concert because the noise level was too loud for Mylah, so we were in the basement of the church,  but I was moved to tears as we walked out on stage, holding our miracle child for the entire church to see. It was truly a moment I will never forget.

Friday evening, was the benefit skating party. There was a large turnout of support for Mylah. Initially, I hadn't planned to take her for long, but we were having such a great time I decided to let her stay. I was so happy so many people finally got a chance to meet her.  My aunt and cousins surprised me by driving in from Ohio just to support our family. It meant so much to me.   Sometimes when you go through trials, family is all you have, & sadly not everyone has family like I do.  It was just nice to have the presence & support outside my immediate family. Those who wanted to be there were there &  I appreciate the change in schedules, the traveling and any other sacrifices made to come and support us.  I also appreciate my friend Antirrell & his company Good Medicine Entertainment for willingly accepting the suggestion to help us.  When he was approached by someone with the idea he didn't give it a second thought. It's amazing the amount of people this little 11lb little girl has touched.

Saturday, I had the honor of attending a baby shower to celebrate the new LIFE expected by a friend of mine. She and her husband have dealt with their own personal trial as they've embarked on their journey into parenthood.   The shower was full of happiness & joy for these parents.  It was during this celebration, that I received confirmation. When you have an open, caring, & compassionate heart that is so willing to help others; expecting nothing in return, that same positivity you exude is returned to you in a number of ways.

Saturday was also a very special day as we celebrated Mylah's 8 month birthday.  I always love the looks on the faces of those who we order her cakes from when I tell them how the cakes should read. Eyebrows shift a little and that "are you sure" look is one that I've encountered a few times. You can hear the hesitation in their voices, so I briefly explain why the cake indicates a month milestone rather than a year.

Mylah also celebrated her 1st Thanksgiving this year. Such an appropriate 1st holiday to celebrate almost 2 months out of the hospital.  I have so much to be thankful for in her. She continues to astonish me each day.  I must admit I got a little sad while cooking Wednesday evening, because I wondered will Mylah be able to hold memories in her heart of her mother, father, and family during the holidays like I do?  She's still too young for us to fully understand what affects the Trisomy 18 has on her brain's cognitive & developmental abilities.  I'm most certainly thankful for all the things that Mylah has done thus far and I'm already thankful for what she will do, but it is a daily struggle for me. In the interactions with my friends and their children I'm constantly reminded of the things that Mylah can't yet do or may never do.  I watch how Mylah remains the size of a 2-3 month old, wearing 0-3 month clothing at 8 months old, and how soon the baby of another friend will surpass Mylah in size and weight.

The uncertainty is still there. Will she walk? Will she talk? Will she know how to count to 10 or recite her ABC's? Will she know that Roses are Red and Violets are Blue? Yet despite the wonder, I remain positive.  I know she will get her voice back and soon I'll hear the sweet sound of my daughter cooing, crying, laughing. I know that there will be things that she may not be able to do, but there will be so much more that she will be able accomplish.  Those accomplishments are so huge to us. Odds that she'll continue to defy.  I try to remind myself of this very statement when I feel myself getting a little down or frustrated.

Though there are days when I want to give up, moments when I wish a NG tube in her nose was all I had to worry about, times I wish all the medical visitations would stop, hours I long for privacy from the home nursing, nights I wish I didn't have to stay up to "monitor" my daughter to make sure she's still breathing and responsive I wouldn't change it for the world. I'm forever thankful for my daughter and this journey. It's made me stronger and I think those who struggle to get what they want love harder and are more appreciate of their blessings.


Mylah's 1st Thanksgiving

Ready for Skating!!!!

Monday, November 12, 2012

Am I Enough???

I often wonder am I enough? Am I giving enough? As a wife, mother, sister, daughter, aunt, and friend.

Going through this journey I realize that I have to spread myself very thin. I have to be a wife to my husband. Making sure that I don't forget to let him know how much he means to me, making sure I tell him how much I love him and still trying to find a way somewhere in between work, school, and the rest of life for US.

As a sister, aunt, daughter, and friend am I able to give back to the people I love. Can I rejoice in their joys, cry during their sorrows, & give direction when needed? How do I do this NOW? With all that is going on in MY life.

Then as a mother am I giving enough to Mylah?  Some days I find myself staring at her in amazement. Amazed at her strength, determination, and complacency. She has no idea what is going on around her. She is so content. I wonder does she know how much I love her? How much I care for her and that I would do anything in my power to provide for her and to make sure that she has the life that she deserves.

There are moments however when I need a break from all of it. I just want to get away and not carry the load with me for a day. How do I do that and feel like a HORRIBLE mother? How can I be enough for ME?

When I don't feel like picking her up, why does it make me feel like I'm neglecting her. When I hold her for 5 minutes, but put her back in her crib, I feel like I'm harming her in some way.  When I rush out to go to the store I'm happy to get away, but soon after I'm ready to be back at home because I need her to know that I care for her and would never abandon her.

I feel guilty about leaving Mylah, but I want to get away. How is this possible to feel 2 different emotions at the same time. Then I think maybe I'm not giving enough as a mother. No matter how much I clean the house to try and shield her from germs, buy her things, smile at her, kiss her cheeks, stretch her arms to make her laugh, go to work to provide, attend school so that I can obtain the degree needed in order to make more money, no matter how late I stay up to make sure she has what she needs, and no matter how many phone calls & emails I send to the various pharmacies, medical supply companies and physicians to make sure she has everything she needs medically I still feel like I'm cheating her out of something. I'm just not sure what it is IF it's anything at all. All I know is that I feel bad.

It's very hard to know that I'm doing all I can for her when I constantly feel like I should be doing more.
It's also hard because in doing the things that I need to do I feel guilty about doing those things.

Then in between all these mixed emotions, in between the Trach changes, vent check's, tube feedings, Trach care, Gtube care, and diaper changes among other regular baby things I'm supposed to make time for myself and my husband, my family and friends. When someone finds the recipe for that I wish they'd pass it along.


Thursday, October 25, 2012

Acts of Kindness....

We have been on the receiving end of these acts lately.

If you follow my blog you may have read my post  Pride...do I have too much?

I detailed how it is VERY hard for me to allow people to do things for me. I fully recognize that I have surrounded myself with people who are like me in many ways. People want to do something, they WANT to help and get nothing in return. That's how I am. I'm always on the other end however,  I know how it feels to want to do something for someone willingly with no attachments or expectations in return. It's in my heart.

Well it was on a few of my friends hearts to want to help us.

A friend of mine who has a christian entertainment company; Good Medicine Entertainment puts on a gospel skating party every year before his annual play. This year he added Mylah to his efforts after a discussion among a circle of friends we share.

At first I wanted to decline his request, only because I know how people are. There may be whispers and/or questions, but what those people don't realize is that this is a blessing. To have people care so much about us, our well being and the comfort of our family is great and no matter what you do & how you do it people are going to have something to say, be it positive or negative.

I appreciate everything our friends have done for us. No matter the size we are grateful for all acts of kindness.  We love that we are loved and that our daughter is LOVED.

I've realized that I've prayed and asked GOD to step in & take control over this situation. I'm learning still to realize when he's allowing that to happen and to allow the people he's sent to do what he's instructed them to do.


ALSO
Please support my friend Tirrell McCoy as he brings his 6th production to the stage!
If you are looking for something the entire family can enjoy, don't miss this stage play! 



Friday, October 19, 2012

What A Difference a Year Makes.....

This day October, 19, 2011... I remember it so vividly.

Waking up, not knowing what to expect. Anticipation had been building for weeks. I wouldn't be at work to cross THIS day off my calendar. I made it. No more wondering. We needed to be on time. I wanted everything to go right. I had no expectations. Either way I would be happy but I knew how I wished the outcome would be.
As we prepared to leave the house, I knew that in a few hours my life would no longer be the same. I was ready to jump right into this new chapter.
Riding down the freeway my mind began to wander. Thoughts ran through my head. Butterflies in my stomach.

"What do you want, a boy or girl?" 

This question is posed to pregnant women time and time again. Most times women respond by saying,

 "It doesn't matter, I just want a healthy baby"

But what would YOU do if the baby you carried, the baby you prayed for, the child you longed for, the daughter you wished for, or the son you tried years for wasn't healthy?

What would YOU do if the ultrasound appointment you made on your 31st birthday didn't go as planned? What if it threw you into a world that is seldom seen? 

As I laid on the table, the tech at my stomach, I could see tell everyone in the room wanted to know what this baby was? A girl or boy?  Silence................ 

"There is something wrong" I thought to myself, "I know it is, this is taking too long". With each minute that passed, I grew more & more concerned. I tried to get rid of the thoughts in my head, but in my gut I knew I was going to hear something that I didn't want to hear. I wasn't prepared. 
Juwan and I tried 2 years for THIS baby.  I did everything right. I'd taken prenatal vitamins for 3 years to prepare for THIS moment. It's my birthday, I am only prepared for good news.  Who gets bad news on their birthday? I picked this day to find out the sex of my baby because I knew it would be the best present I could ever get.  I'm supposed to go on a shopping binge after this appointment. I have it all planned out. 

I tried to calm myself down...... Positive thoughts... Positive thoughts. 

Time passed. The doctor entered. He looked. He left. The tech looked more. We were moved. The doctor looked more. He confirmed my worst fears. There was something wrong with my baby. 
I cried continuously for days. 

Earlier this week I got kind of down. Only because I remember how it felt last year. I got upset because I thought that I'd ruined my birthdate because it would forever be overcast with receiving bad news. 
Then I realized that my 31st birthday was the turning point in my life. It was the beginning of a journey that would test my strength, perseverance, determination, and faith. 


1 year ago. I googled Trisomy 18 and was introduced to something that would change my life. Who knew that a condition that I never heard of would become part of my everyday conversations. 

Trisomy 18 has turned me into a educator, motivator, supporter, confidante, & advocate. 

One year ago I never expected to be where I am today. I've learned so much, experienced much more and gained an abundance of knowledge. I know my purpose. 

Mylah isn't how I pictured her. She's not the baby I saw in my dreams. She is made the way GOD wanted her to be. I wouldn't want her any other way, because he made her PERFECT for me. 

Thank you all for your prayers this last year. The support, love, care & concern has REALLY helped me and I will continue to press on. 

I can do all this through him who gives me strength.
Philippians 4:13 (NIV)






Monday, October 15, 2012

Untitled...

The ability to conceive & bear children doesn't come as easy to some women as it does for others.  If you are a woman who has never had an issue getting pregnant & STAYING that way, you should be thankful.

I'm finding on this journey that many women long to have children. Some picture their lives with children at a very young age. Personally my daydreams about my family started in my teens; A boy & a girl; because I always felt a girl should have a older brother to protect & annoy her.

Perfect Little Family right?....

For some that dream is a little harder to achieve. As I travel this journey I'm connecting with women who have lost children to miscarriage early in their pregnancies and some later all due to various reasons.
I only knew a handful of people who suffered from the loss of a child but now I'm finding more and more women have experienced the pain and some multiple times.

For this very reason when I hear about a parent especially a mother neglecting their child/children I really take it to heart because I know that there are so many women who wish they could have a child to care for & nurture.  Carrying a child is a blessing. For 9 months you carry inside you a mini version of yourself. Anticipation gets stronger as time goes by.  Daydreaming about what your life is going to be like. Decisions regarding daycare, Pampers or Huggies? Breast milk or Formula? Pink or Blue?

Then in a instant that dream is snatched from your womb. Months, weeks, days; too early. Some go through the pain of having to birth a child with wings. A baby GOD decided to take back before he/she ever had a chance to live, breathe on this earth.  Leaving the parents to wonder, question, & attempt to grasp the shock of it all.

Not everyone gets the "healthy baby" that most people long for. Some go into the hospital expecting a baby but leave empty handed, no baby, only with the memories that they hold in their hearts.

Today is National Pregnancy Infant & Loss Remembrance Day. Today I say a special prayer for all those who have lost a child, suffered a miscarriage, & buried a child. May you find peace in the memories you hold in your heart and I pray GOD grants you the serenity to try again.



Monday, October 8, 2012

Newest Endeavor...

Home care nursing.

For most families it's a struggle. Why? You are entrusting the care of your medically challenged child to a complete stranger.  Most families have to work to make a living & the nursing helps make that possible.

Having no experience with home nursing I really didn't know what to expect. I have a number of friends who are nurses (RN's) and I guess you could say that I was spoiled. If I didn't know my nurse friends & strictly went on their work ethic I know that Mylah would be given the best care possible if they were her nurses.

I was warned that nursing would be the biggest adjustment once we were back home. BOY if this isn't the most HONEST TRUTH yet. Of course no one will take care of Mylah like we will, but I have high expectations.  Why wouldn't I?

It's known that children don't come with instructions... WELL in our case Mylah does. One mistake can mean life or death and I'm serious when it comes to her health. The care that she needs can't be underpar. There's no compromising or negotiating. It's black and white.

There is no more privacy. Having a person come into your home to provide care for our child 7 days a week for 10 potentially 12 hours a day. We are basically gaining another member of our household & our current house doesn't allow for us to be in one room and them caring for Mylah in another.  Since this is so new to me, I'm that mother who is present at all times. Watching, Observing, Instructing, Teaching. This will soon change as I prepare to return back to work. I've had 1 week to get "adjusted" to these new people, but what do you do when the ones who've been sent, don't fit the mold?

Home nursing is a service that is being provided and customer service is still critical. There have been some behaviors exhibited that have left me to question whether Juwan & I can survive on one income and I'm serious.  I need to be able to leave my home and have some sort of comfort in leaving Mylah in the hands of a trained professional.  The training is important, but the professional part is what is lacking.
I want people to feel comfortable, but not TOO comfortable. This last week has shown me what the other families struggle with & now their struggle is also ours.  It's a huge adjustment to go from living in the hospital for the 89 days to coming home expecting the same type of care but not receiving what I'd anticipated.  I want the best, the most attentive, one who cares, & listens. I need someone who will know what to do in an emergency and isn't just doing the work for a pay check. If there's no passion behind it I think this makes a HUGE difference.

Do you see why you have to pray over your children? And those who come in contact with them?



Tuesday, October 2, 2012

There's No Place Like Home....

Simply stated...

after 89 days, open heart surgery to repair multiple defects, a episode of respiratory distress, a surprise diagnosis of severe tracheomalacia, a tracheostomy, 4 weeks of ventilator training, electrical upgrade shenanigans, flu scare that delayed our discharge date.... We are HOME.. where our HEART is.

Never thought that I would spend summer 2012 in the hospital. When we drove up the highway that Thursday, July 5, 2012 I didn't think that it would take 89 days for us to bring Mylah home.
We are still getting settled, it's hectic, but I'm happy & thankful!

Thankful for all the things we've gone through, thankful for all the lessons I've learned, all the knowledge I've gained, & all the people we met. There were times when I didn't know if I could go on. Didn't know how much more I could take. At one point I thought I was witnessing my daughter's last breath. When I signed the surgical consent for her tracheostomy I felt like I was signing away her life.

The journey to this day has been a long one. Starting almost a year ago. Just 17 days from today's date one year ago is when it all started. I went to the hospital to get a ultrasound and to find out what the sex of my baby was and left not knowing what the future held. There were so many days of uncertainty. This morning in the shower I thought to myself "I think I've cried more in the 348 days than any other time of my life.  The tears however weren't all because of sadness. There were tears of joy, happiness, pain, gratefulness, amazement, defeat, & GLORY.

I know that the strength I draw is from no one but GOD. His love is everlasting.  He has blessed me in so many ways. I would be scared if having gone through what I've endured thus far NOT knowing how I made it. I'm fully aware that he has his hands on Mylah and my family. Ordering our steps each way, opening doors, but sending us down paths so that we gain the understanding we need to press forward.  I know that I have a calling to help others in the same situation.  I know that I'm supposed to help bring awareness to Trisomy 18. I know that I'm supposed to promote LIFE & HOPE, & FAITH.

Helping is what I was put on this earth to do. That's why my heart is the way it is and he used Mylah's heart to show me the way.

I'm always thankful for each person that has said a prayer for our family. Every token of love, support, and encouragement is GREATLY appreciated.

Thank you & please continue to pray for us!!!!


Mylah our own Little Victor! 

Thursday, September 27, 2012

So close I could touch it...

That's how I felt about discharge. For weeks we've been anticipating Mylah's discharge from the hospital. I mean lets face it we are ready to be home! All the stress, excitement, & anticipation was building up for this day! TODAY Thursday, September 26, 2012.

We ran into issues with the electrical; being pressured by the hospital to get it done, performed a mini Extreme Kitchen Makeover, various shopping trips for supplies etc. all for today.

At our discharge meeting on Monday we discussed with the docs the plans for discharge, our private duty nursing, follow up appointments, & lastly the vaccines Mylah needed before being discharged. It was highly recommended she get the flu shot & she was past due on other routine vaccinations. I needed to do some shopping so my sister & I left for a few hours & when we returned she had gotten her shots. I think it was really better for me! We celebrated her 6 month birthday; the 3rd one celebrated at the hospital. That night I did what we hadn't done since she was admitted. We left Mylah by herself. Since her admission someone had always remained close by; either in the room with her or across the street at the Ronald McDonald house. We all went home to try & make this mad dash to finish prepping the house, for her arrival. Electrical work had to be completed, the floor needed to be laid in the kitchen, & the house needed to be put back together.

I kept in touch with her nurses on Tuesday & she was fine. My nerves were on edge all day because I have a fear of "not being there" if something happens. I drove back up to the hospital that night for a few hours & left again about 12:45 a.m. after she had fallen asleep. Her nurse mentioned she had a slight fever but it seemed to be going down & was more than likely a result of her shots. Wednesday morning I called her nurse
& was told she would call me back. The respiratory therapist came to the house to set up Mylah's home ventilator & to deliver all her medical supplies. My dad started laying the kitchen floor. I still had errands to run & wanted to head back up to the hospital to see Mylah. Then remembered that nobody returned my call & forgot that I'd given them my work number to call me on. I called my work voicemail & the doctor had left a message, I knew something was wrong because why would the doctor call? She said Mylah had spiked a fever overnight & that morning. Her oxygen saturation had dropped to the high 80's (should be 95-100). They started a IV & antibiotics, took urine, & blood cultures & a sample of the secretions from her trach to test for infection.

I thought "She's not coming home"but let me not get ahead of myself lets see what they say 1st.

I called again, left my cell & house number. I prepared to head back up to the hospital. Finally I spoke to the doctor she said the same thing & the words..."she's not going to he able to come home"

**insert expletive here** I didn't say it but I thought it..

Defeat, anger, stress, sadness,disbelief all set in... I couldn't even cry really. I just laughed a couple times but it was to keep from crying.

My sister & I headed back to the hospital. We were greeted by the unit host. She had been excited that we were going home & was shocked we weren't leaving. She then said she wondered why Mylah had a droplet contact precaution sheet on her door... The look on Toya's face was one of disappointment. I didn't know what droplet contact precaution was but I would soon find out.

Ever seen the movie Outbreak?...

Well that's how I felt. Gown, gloves, face shield, mask for anyone who comes within 3 feet of her.
I walked in to her sleeping, a IV in her head!

Home was so close 2 hours ago. We passed our home inspection & had all our supplies. Now another weekend & that dreaded Oct 1st date will come & go but here we'll be.

I drove home alone, my sister once again stationed in Mylahs room. As I sat at home I cried. It's getting harder & harder. I'm trying to remain calm because I can't get sick & I'm no good for Mylah if I'm sick. It's hard to see tomorrow because I'm afraid of what may come. It's not fair at all & each time I see her precious face I'm reminded of how unfair it is for her. She didn't ask for this, she doesn't deserve this. It so easy for a person who isn't going through this to say "Mylah is strong" or "Mylah has a purpose" I know all of those things. I'm amazed by her strength but as her mother it's hard. To be so close to home only to have the door slammed in your face.

THIS journey...... nothing more to really say.....

Monday, September 24, 2012

Almost There....

Sorry to all the folks who follow my blog. I apologize for not posting in a while, but sometimes life has a way of taking you on a ride and won't let you off for a break.

..... rest stop here..... only for a second though....

This may be the week that our sweet baby girl comes home. The hospital only discharges on Tuesdays & Wednesdays.  We have some electrical upgrades happening at the house today so that her ventilators don't blow the fuses in our home.. Yes! I said fuses, thus the reason for the upgrades. Depending on how long it takes she may be home Wednesday. The hospital doesn't like to discharge close to the weekend, but have indicated that they may make an exception for Mylah if they need to.

I've been really busy between the hospital, work, and school I'm really exhausted. Then I had a bright idea that I wanted to paint our kitchen before Mylah came home. So of course a simple paint job turned into a mini renovation. It's been a long time coming though. Our house is older and we been trying to tackle each room, but haven't really done any renovations for about 2 years. Of course the 2 rooms that need the most renovating were left for last.  I had a vision of what I wanted my kitchen and bathroom to look like, but struggled with whether I should just save the money and ride it out until something better came along or just do it.   Since Mylah is probably coming home this week I figured we may as well go ahead and do the kitchen and wait on the bathroom. It's coming together ok, thanks to Juwans friend Rob & my parents who are helping us. So funny because I found out my mother had never painted before & of course my dad is the black Bob Villa LOL.

I'm really excited and nervous about having Mylah home. I know it's going to be very different from being in the hospital. I wonder how long it will take us to get out of hospital mode. It's almost been three months and I've gotten used to the "hospital living".
I won't miss the drive that I know, but I will miss some of the nurses and staff that we've come to know during our stay.

Mylah's 6 month birthday is today.  3 months ago I never would have thought I would be still waiting for her to come home from the hospital. She's celebrated 3 birthdays since she was admitted to Mott. The half way mark. Half way to one year. This 6 months has actually flown by and it's bittersweet. Only because Mylah isn't the normal 6 month old. I stopped looking at the emails from BabyCenter a few months ago. Only because it got to be kinda of upsetting and depressing. Each month they send you emails on where your baby "should" be, what to expect, and milestones that your baby has reached thus far.   I don't have the ease of knowing that Mylah will be able to sit up, say her ABC's, pull herself up, or go to the potty.  All of these things may come later,  but I'm not sure.  I have to allow her to set her own pace and celebrate the things that she does along the way.  She recently discovered that her arm moves up and down and spends a nice amount of time raising her hand like she's trying to answer a question the teacher just asked. It's pretty funny.

Last Saturday,  we did our Leave On Pass. It's where you take your baby and all the equipment, to a hotel room (on the hospital campus) and have trial run on what it will be like to be at home. It was good to be out of the hospital room. But honestly, it was kind of frustrating. There was so much equipment to pack up and transfer to the hotel which may I add was all the way on the other side of the hospital. The room was huge at first, but after 3 adults, a 5 month old, 2 ventilators, 1 suction machine, 1 kangaroo pump, a double stroller, portable pulse ox, and a partridge in a pear tree descended upon the space it started to feel like solitary confinement very quickly.  Nevertheless, we passed. My sister took the night shift and stayed up with Mylah (because someone has to monitor her 24/7).  We had to administer all her medications, run all her feeds, suction and reposition her all on our own. It wasn't anything different from what we were already doing, but with the nurses in the hospital you get the luxury of being able to sleep at night.

We have private duty nursing set up for when we come home. There will be someone with us for 12 hours a day, 7 days a week. Holidays, Weekends you name it she'll be there. Basically we'll be gaining another member of our household.  I pray that this goes well. I've heard many horror stories about nursing from other families.

It's times like these when you start to reflect on all the decisions you've made in your life and the bad decisions do start to haunt you. "If I would have done this, then maybe it would be better". I don't know how many times these last few weeks I've beat myself up about things I've done & decisions I've made in the past. No matter how much I try to get them out of my head, the feelings of regret keep coming back.  I just feel if I would have been more responsible and made better decisions things would be better for Mylah.  Now I'm faced with the issue of having to go into overload mode so that I can try and make her future better, but praying that I'm making the right decisions along the way.  Praying that I'm spending enough time with her. Praying that she will always know how much I love her. Praying that her future is long!

It's still hard for me mentally & emotionally. With so many people I know either getting pregnant or having babies, I'm constantly reminded that Mylah isn't like other babies. I never really wanted to use the word jealous but lately I have been envious of a lot of people. I watched a play called Church Girl & there was a scene where a father was indicating that GOD was punishing his daughter because of things he had done in his life. I cried so much after watching the play because the devil told me that Mylah was being punished for things I had done in my past. He made me feel so bad. He made me feel like I was the worst person in the world and that this was all my fault. I went over to her bed and laid my head next to her and cried and repeated how sorry I was. In that moment I did feel that Mylah was being punished because of me.  Although I had asked GODs forgiveness many times for my transgressions, the devil still took those things and threw them in my face. In my weak moment he succeeded in attacking me.  I had to go to a friend of mine and talk to him about how I was feeling.  He reminded me that it was because of GODs plan. I had said it myself in the past that I wanted to be closer to HIM and asked GOD to open my heart to HIS Word and to draw me close to him.  In that weak moment I had forgotten that GOD used Mylah to do just what I asked of him, the devil saw that I jumped at the chance to get me down.

This journey is always changing and I'm changing as well. Learning along the way.  I need to be more disciplined and dedicated to GOD. I was seeking him daily before Mylah was born and during the days she wasn't doing so good and now that she's doing better I've gotten lazy or satisfied I should say. I'm being honest. I know I'm not the only person like this, but I can admit it so that I can do better.

Please continue to pray for me and my family.

Sunday, September 9, 2012

Hope Beads...

Hope Beads are much like the badges Girl Scouts get. Each bead symbolizes a pivotal moment in the child's hospital journey. The child can wear the necklace like a badge of honor or their parents can proudly display their journey.

Mylah has 2 Hope Bead necklaces. One she received when she came out of her open heart surgery and her 2nd once she returned to the PCTU on July 24th. I've been meaning to add to Mylah's necklace since we've been on the Stable Ventilation Unit but it seems to slip my mind.

When I leave the hospital I usually wear Mylah's Hope Bead necklace because I've also attached my parent badge to it, so it's easier to remember. Someone joked recently that I wear it like a work badge. I've been many places with the necklace on but no one has ever said anything about it. Most times I forget it's there.

Today at Cracker Barrel while ordering my food our waitress asked about the necklace. I'm so used to wearing it that when she asked me about it I looked down like "huh". Then she said "the beads". She went on to explain that her niece had a Hope Bead necklace from Mott's. She had a rare form of leukemia, had a bone marrow transplant, but sadly lost her battle with the disease. She asked me some things about Mylah; what was she there for, what floors were we on etc. She took our orders, & brought our beverages.  At the end of our meal she came back and asked if we were headed back to the hospital.  I replied that we were and that Toya and I remained at the hospital and Juwan would eventually go back home. She said that her sister worked for the hospital and was able to still work and tend to her daughter & her brother in law ironically was laid off so they were able to be there for their daughter and spend lots of time with her. Her niece was in the hospital 14 months the duration of her life.

When she left it was silent for a little while. Then Juwan said what I think we were all thinking.  "Just when you think YOUR situation is bad there is always something to make you realize that it's not as bad as it could be". He took the words right out of my mouth.  We have been here at the hospital since Thursday, July 5, 2012. It's been 66 days.  14 months is 426 days. They were in the hospital with their daughter 6 times more than us as of today.

While she was gone I had been going through Juwan's phone looking at his pictures of Mylah, because it seems like he has all the GOOD pics.  She came back with a box of food for us to take back to the hospital. I showed her a picture of Mylah. She smiled, I smiled, then she turned red. She asked me my daughters name and quickly scribbled it on her order pad. As her voice cracked she said that Mylah was beautiful & she would be adding her to the her prayer list. She immediately walked away. I could tell she had began to cry but wanted to rush away before the tears started rolling.

As we prepared to leave the manager came up to us.  She noticed that our server had been crying and she explained that the staff loved her niece who she was still understandably grieving over. She wanted us to know that she would be praying for Mylah. She gave me a hug and expressed that she knew that prayer could change things. Which I was quick to agree on. She asked that we come back in to give them a report on Mylah.

I was so touched by this encounter today. Sometimes you can find yourself feeling lonely or isolated. Not many people travel the road we are on. Many will never know what it's like to have your life turn completely around. Some will never understand how it feels to enter the walls of a hospital, not to visit or attend an appointment, but to have to set up your own living quarters in your child's room, camping out day after day still trying to find some sort of "normalcy" in it all. A lot of our family and friends won't comprehend why we can't just find a babysitter and get out once Mylah is home.

Although I'm saddened by the loss of our servers niece & I will keep her in our prayers, it was comforting to know that she knew how we felt. She eased my heart a little and I will always remember her for that.


Saturday, September 8, 2012

Pride...do I have too much?

Acts of kindness move my heart..

I remember a about a little over a year ago I reached out to help this homeless woman. I noticed her standing at a traffic light each day on my way home from work. Every day I'd pass her, not knowing anything about her journey but wondering what events brought her to her current state. Job loss, mental disability, drugs? I wasn't really sure. I continuously thought how hard it must be for her to trek to this potentially dangerous intersection each day to hold up a sign, dingy & covered with grime with words that pleaded for any assistance one could offer.
Each day I drove past this woman with those thoughts. How could I help her? What could I do? I wasn't really comfortable with giving her money because I didn't know where it would go.

Then one day I drove home in the rain. Big droplets of rain pounded on my windshield so fast that my windshield wipers couldn't keep up. Strong gusts of wind attempted to steer my vehicle in the opposite direction. As I approached the spot where this woman usually stood I was positive that she wouldn't be standing out in this weather, but there she was. Standing at the side of the road, in the middle of the rain & not only being drenched by the rain that fell from above but also being splashed as cars sped past her in a rush not caring that this person, a human being was standing only feet from the puddles that disintegrated upon impact with their tires. Her hair was stuck to her face, her shirt covered with water, not a dry spot in sight. I was so hurt when I saw her. I continued driving making an effort to not speed past her so that she would be spared another puddle shower. "I need to do something!", I thought.

Super Kmart was right there. I made the michigan left & ran inside. Shirts, a poncho & I needed a umbrella for myself. I drove up to her, luckily the light was red. Honked my horn & she approached. I told her I didn't have any money to give her but that I bought her the shirts & poncho. She gave me a smile, said thank you a few times & God Bless.

The light turned green & I drove off. It felt good. I knew in my heart I had done the right thing. Later on doubt set in; I wondered if she would use the items I gave her or would she just throw them away. I couldn't ponder over it, I did what I was supposed to do.  The next day my worries went away as I drove past her & saw her wearing the poncho & one of the shirts I bought her.

Helping others is something that is like second nature to me. However, it is VERY hard for me to accept help from people because I've always been the type to handle things on my own. In response to questions about needing anything my response will always be "We are good" because I just feel that certain situations aren't for others to stress over. I recognize that people who care want to help & that the giving is sincere & requires no "payback". When I do things for people I don't expect a payback because I give/help/volunteer out of the love that's in my heart & I enjoy helping others.

Twice this week we've been the recipients of kind acts from people who just want to help. Had these individuals approached me beforehand I most certainly would have turned down their desire to assist especially when it comes to financial assistance.

A friend of mine requested my address earlier this week. On Thursday, as I left for work I grabbed the mail and amongst the bills & circulars was a card from her.   I had tears in my eyes when I read the  words because they were so touching (if you know me you know that I LOVE cards).   She said that GOD had placed it on her heart to send us a blessing.  I immediately said to myself "she did not have to do that"... but she did.  Another friend that same day, sent me a text saying that she hadn't been to see Mylah because she had a little cough but that she had some things that her church donated to us and wanted to make sure we got the items. They also wanted to give us some assistance with our Ronald McDonald house bill. Once again, I thought "that was not necessary", but they did.

Everyone handles & adapts to situations differently. When you are so used to being there for other people and always trying to help others it's hard when the tables are turned. Enduring this journey causes you to self reflect. I'm not saying that the pride I have is a bad thing but sometimes it can hinder me because trying to "handle it" all the time isn't always possible. I have to accept that if I've asked GOD to be my protector, provider, and my guide then I have to recognize when he is sending his people to help us.  Simply stated... I get it.

Our tentative discharge date is September 18th.  Tentative because we have to secure private duty nursing, & ensure that the electrical upgrades that are required to support Mylah's ventilator(s) are completed. I pray that things will continue to fall into place.  I really look forward to having Mylah back home and hopefully celebrating her 6th month birthday there.

I just would like to thank each person that has come to visit Mylah, has sent her gifts, has come to spend time with us & have sent items to help ease the weight of this journey. No matter how big or small the gesture is in size it all means so much to us. I will never be able to say thank you enough.  I'm very thankful for the support, prayers, encouragement, and love that is projected our way. Please keep us in your prayers.


Tuesday, September 4, 2012

What's in a name?

The question I always get is "where did you get the name Mylah?"

How do I begin to explain? Will the person who asked the question get it? Will they really understand?

So I just tell the story...

Some people know that I love music. Additionally, I love to sing. If I could turn back the hands of time I would have started to pursue singing and perfecting my craft at an early age. Life has a way of not going the way we picture it.

MTV had a reality show series called Making the Band & season 3 aired around the year 2000. Puff Daddy/Puff/Diddy sought out talent around the country and wanted to create this female supergroup who would take the industry by storm. Singing?? Oh I was all in. I indulged in the fact that Diddy would be making someone's dream come true.  Every week I made it my business to make sure I was over Juwan's house (we were dating and our house didn't have cable tv) to catch the series.

The determination, tears, excitement, and disappointment; I watched it all. I clearly remember a few of the contestants, but 2 really stuck out to me. Andrea, who was small in stature but her voice so powerful. I knew she would eventually "Make the Band"  & a girl named Mylah.  Mylah was a soulful singing, quiet, no drama creating black girl whose name I fell in LOVE with. I remember saying "if I ever have a daughter, I'm gonna name her Mylah".  Mylah's voice was so smooth, she was different than the other girls. She seemed grounded and humble. Each time she & Andrea sang I literally got goosebumps. I also remember wishing I had the courage and voice they had to go on a show to sing & dance for the one of the most important people in the music industry.  I rooted for Andrea & Mylah and hoped that the 2 of them would eventually have their dreams come true.  Sadly, Mylah didn't make the band but Andrea did. What a mistake Diddy made I thought. The career of the band created on this show was unfortunately short and both artists began to fade from my radar.

Fast forward to 2011. Once Juwan and I began to discuss starting a family, I did what I'd always done since I was younger. I wrote down the names that I wanted to give my children.  A boy we agreed Juwan would pick the 1st name and he would have my dad's name as the middle name. A girl I would pick.  I knew "Mylah" would be our daughters first name, but and she would have my mother's name for her middle name.

Like I said before I always knew I would have a girl. Once Mylah's gender was confirmed I was elated that I would get to use the name that I'd been thinking about for the last 11 years even though it was a possibility that she would pass away.  I would say her name to myself sometimes just to get acquainted with saying it.

Then I began to wonder about Mylah. The other Mylah. The girl from the tv show. What ever happened to her? I began to search the internet and I came upon her Youtube Channel and her website. I was happy to see that she was still pursuing her music. Still working towards her dream! I listened to some of the songs she'd posted on YouTube and there they were... those goosebumps again. Her voice still the same. Still full of soul & power. Her pitch perfect, her range astounding.  I followed her on YouTube & Twitter.

One day while I was social networking I got this bright idea to contact her. I'd been following her on Twitter and I wanted to see if the woman I was naming my child after was really as cool and down to earth as I thought or was it all for tv? What was I gonna do if she wasn't so welcoming? I didn't really have any other names picked out.   Thankfully my assumptions about her were correct.  We had 140 character conversations on Twitter (LOL). I told her about my pregnancy, about naming Mylah after her and about the diagnosis.  She shared some information with me about herself. She was also very comforting and supportive. I knew then that the name Mylah was a good choice.  Through my pregnancy we continued our interaction and to this day she is still as down to earth and caring as the 1st time we spoke.  Her family continues to pray for Mylah and they've commented on the blog a few times.  From their comments I can see where Mylah gets her sweet personality from.

Mylah does continue to sing. In fact today she will release her 1st single as a solo artist and I have no doubt that she will not disappoint!

I'm asking all of my readers to please support her! Go to her website and get the single EVER, follow her on Twitter , Like her page on Facebook. I know it will mean a lot to her and it will mean more to me!

Sunday, August 26, 2012

Creative Minds....

Here is a post that I would like to share.

The story behind the design of the wood planks is inspiring. Scott Newport is a very talented, caring father who we've had the pleasure of connecting with.


I wonder what mom he is talking about??? hmmmm..... Enjoy!

http://www.differentdream.com/2012/08/redwood-love-notes-at-summer-camp/




Friday, August 24, 2012

Q&A....

Since Mylah has been in the hospital I transferred to our Ann Arbor, Michigan office for work. Once a week I still travel back to our Southfield office. I usually pass up a billboard on my way into that office & each time I pass it I smile and laugh to myself.

Only because I know the question doesn't really mean what most think it does. My response to the question is not the response I think the marketing team was aiming for.

I remember why I chose this hospital to labor & deliver my first child. I wanted the most pleasant birthing experience possible. I wanted to be in a place where I knew I could get the very best care for myself & my new baby should he/she need it. I had a vision of what I wanted to experience the first time I had a child. I didn't give it a second thought.

I was worried when the hospital & my insurance carrier got into a contract dispute regarding reimbursement because it threatened my ability to deliver there. I asked GOD to intervene & resolve the negotiations before I went into labor, & it resolved. I was safe.

Then came the diagnosis; Trisomy 18 and in an instant, everything changed.
No more prenatal services from the hospital. No additional testing. No heart monitoring. No resuscitation... because the baby would die anyway so there was no point. Most importantly, no option for surgery to fix the defects of my child's heart.

I know most people who see this billboard have a simple answer, but my answer is a little more complicated and complex but it's able to be addressed in a simple statement.


              "Trisomy 18"


That's why I went somewhere else. To a place where my child was treated because she was a living, breathing, striving, thriving, Human Being and not denied care because of a extra chromosome. A place that acknowledges her Trisomy 18, but treats Mylah not the "Trisomy 18".  A place where the doctor said he would support us in our decisions whether we opted for full heart repair or not. A place where the surgeon said "it's your decision, not mine". A place where Mylah is called by name and not looked at as a child with no chance for survival. A place where physicians try to help her LIVE with her Trisomy 18 and haven't discriminated against her because of it.  A place that is giving her the care she needs which is making a difference in her LIFE. A place that saw her heart defect as it's own issue outside of her Trisomy 18, and said "lets fix it and let her write her own story". A place where she is loved by staff and they want to give her all the resources available to help her continue along.

Mylah is where she is supposed to be, receiving the care that she should be receiving. She's celebrating 5 Months of LIFE today. She has a repaired ASD, VSD, & PDA. She is receiving PT, OT and eventually will start speech therapy.  She continues to get stronger each day.  She is 5 months older because GOD has the final say.

So that's why we went somewhere else.  I'm sure this isn't the answer marketing expected but it's the answer I was given because we didn't have a choice the choice was made for us.







Friday, August 17, 2012

The Future?????........

I didn't realize that it has been 2 weeks since I've blogged. I apologize. Sometimes life just gets away from you. With work, school, and this whole journey with Mylah it's sometimes very hard to maintain anything outside of the 3. But this blog is and has been my diary. It's a place that I can explain how I'm feeling and especially give updates about Mylah. I appreciate each and every person who takes the time to read these thoughts. You may never know how much it really means to me!

Yesterday I was talking with a friend about my feelings during this whole journey. We took a lunch at work yesterday & indulged in Thai food & cupcakes. I'd been craving both for a few weeks. It was nice to get away from the hospital. Away from the beeping, the medical jargon, the smell; just away from it all. Although I'm never really fully away.  My mind & heart is always here at the hospital with my daughter. No matter how much I can't stand being here, I am always in a rush to get back when I leave.

My friend & I were speaking about Mylah's episode of respiratory distress on July 24. I don't think most people who are aware of what happened really KNOW what happened. I was good to get some of my emotions out to my friend. I know she will never fully understand what I felt, but it was good having someone cry with me.  I explained to her that sometimes  I go through these rough periods because this is hard and even the strong get weak sometimes.

Last Friday, Mylah went in for her G-Tube surgery. Intially, the plan was to do it the same day as her trach, but because of some digestive issues she'd been having the surgeons decided that they would just put in her G-tube at a later date.  Last Friday was that date.  Thursday evening, the surgeon discussed with me the procedure, the risks, possible complications, it's severity; all things I've become used to.  I gave my consent.  I planned to work from our Southfield office on Friday.  The surgeon informed me that the G-tube surgery was considered minor and that the percentage of complications were very low. I had no doubt that Mylah would pull through with no problem.

She left for surgery at about 10 a.m. Friday morning. My sister waited while I left and went to work.
The day began to progress and about 1:51 p.m. I noticed that I had not heard from my sister. I called and she informed me that she was still waiting. I called Mylah's nurse and my worst fears confirmed.

"There was a complication during surgery"

If I would have just stayed there maybe this wouldn't have happened. Her nurse tried to explain what happened, I was on the phone, but I wasn't present during the conversation.  She said Mylah's bowel had been nicked at the end of the procedure, there was a lot of bleeding, her blood pressured dropped very low and she had a very hard time breathing.  Mylah was back in her room and was stable, but she was very pale from the tremendous loss of blood. She required a blood transfusion, and was put back on the old ventilator because she required more support to breathe. She would have the surgeon call me.

YOU'VE GOT TO BE KIDDING ME.......... is all I could think.... Here we go AGAIN.

I didn't know what to do. Scream, cry, or yell.  Should I leave or stay. The hospital was about a 35 minute drive from my job.  It was getting close to rush hour and I'm not in a mental state to drive. I was worried about myself.

I called my sister and told her that she could go back and I had to tell her what happened. Neither one of us were prepared for this. How does a routine, minor surgery turn into something major? While on the phone with my sister my voicemail notification went off and I knew it was the surgeon.  He left a message, but no number to call him back.

Frustration level rising.....

Placed a call to my sister and told her to tell the nurse the surgeon called about but didn't leave a phone number.  The nurse would page him to my desk phone.

Mylah's ICU doctor called shortly after.  She repeated the same. At the end of the G-tube insertion (which was successful) as they were pulling back the laparoscopic camera the needle nicked Mylah's bowel. They inspected the bowel by pulling it all the way out, closed her up and then she began to bleed from her G-tube site and her trach.  That's when her saturation dropped and her blood pressure plummeted.

I just couldn't believe what I heard.  Then the surgeon was calling. He didn't sound concerned or sound like it was serious.  I just sat at my desk in disbelief. I began to cry. I couldn't hold it together anymore. I cried and cried and cried. My friends at work tried to console me. They prayed for Mylah, they cried with me and encouraged me to leave.  GOD has a way of showing up right when you need him.

There was no traffic on the road. I got back to the hospital in record time to see her. My baby, 7lbs barely, 36 days from open heart surgery, 1 week from a tracheotomy, & pale white.  Getting the 1st of 2 blood transfusions to help restore the blood she'd lost.  Another set back. In that moment I realized that nothing is minor anymore.  Things can change so quickly. What does the future hold?

I explained to my friend yesterday that many days come and go and I feel like my daughter has drawn the short stick.  Uncertainty is a way of life for me right now.  You can be the most faithful servant of GOD and you will still have these days. If a person going through something like this tells you they don't ever think about the uncertainty of the future they are definitely lying.   If they tell you that never experience days where they feel like they can't go on, they aren't being truthful.  People often forget that we are still humans.

The day Mylah went into her respiratory distress (July 24th) her life literally flashed before my eyes.  I knew the moment I dreaded had found me. Scenes of her funeral; people crying, singing, and giving their condolences all played in front of me. Her obituary, her closet full of clothes, her crib, her name on her room wall. Having to explain to the clerk at Babies R' Us the reason for returning her clothing. All of this played over & over in her head.  As I laid on that floor crying, calling out asking GOD not to take my baby, acknowledging that HE is almighty, powerful & able to do exceedingly above what any man can. I begged him to spare her.  And he did.....

Tomorrow isn't promised, but neither is the next hour and the unknown eats away at me sometimes.  I don't know if I will get to give her this big 1st birthday party that I've dreamed of giving her.  I'll never know if she'll ever experience the things I did as a kid. I don't know if I will get to school shop, or pack a lunch, or go to a parent teacher conference.  I'll never know what HE has planned for her life.

In these uncertain times, He's teaching me to appreciate the small things.  Her smile, her amazement with the mobile spinning above her bed, spit bubbles coming from her mouth, her response to seeing my face. Those things bring me peace and help me make it to the next hour.  With each hour those uncertain moments begin to fade and I'm able to move on. To celebrate and appreciate the gift of my daughters life.

Slowly Mylah is starting to return to the Mylah we knew before surgery. She's smiling so much more than before. She smiles at our smiles. She smiles when we rub her head.  The nurses love her and she has her favorites too.

Right now we are trying to figure out her feeds. She had some days where she was fed, but couldn't hold it down. They are trying to let her rest hoping that she just needs time to recover from having her bowel disturbed.

People often ask how I'm doing. My response? As long as she's okay, I'm ok. Right now.. she's ok & so am I.

Thank you for all your prayers and continued encouragement & support.
Thanks to all those who continue to call, text , send gifts and even come visit.

Please continue praying for Mylah.

Pray that she gains strength. Pray she gains weight. Pray that this trach is temporary and that she will be able to maintain her airway on her own. Pray that her muscles get strong. Pray that she eventually will eat orally. Pray that she has strength in her legs and will be able to use them.

Friday, August 3, 2012

Another Surgery......

I never thought or ever imagined that I would be still sitting at U of M C.S. Mott Childrens Hospital 29 days later waiting on my daughter to return from another surgery.

Tracheostomy..... my worst fear....

It was confirmed last Friday that Mylah required a trach. Having been unexpectedly diagnosed with severe Tracheomalacia, Mylah will require some assistance to keep her airway open.  As I blogged previously, nothing could have prepared us for what is in front of us.

We of course had to meet with the physicians, cardiologists, & social workers on staff regarding Mylah's condition. It felt like something out of a movie scene. I waited and waited for the director to yell "CUT" but no words.   We were asked to make a decision; proceed with the tracheostomy which also requires a home vent system in order for her to breathe.. OR do nothing and hope that maybe Mylah could maintain her airway on her own with no assistance or if she couldn't allow her to take the breaths that she could eventually passing away.

I remember her face when Mylah had the episode of respiratory distress on the 24th. It was a blue grayish color, bubbles were forming on her lips, time seemed to move so slow. I couldn't see myself allowing my daughter to go through that no matter how much they reiterated to us that she could be made "comfortable". What comfort is there in not being able to breathe?

After her episode of distress I recall the doctor explaining to me that while they were trying to determine what happened, they saw that Mylah was trying to breathe, she just couldn't seem to take deep enough breaths.  "Her brain was telling her to breathe" is what he said.

In the meeting those words stood out. She was trying to breathe, her brain was telling her to inhale & exhale.  As long as she continued to try, We will continue to fight to give her the tools she requires. If her brain wasn't functioning or her heart was failing then of course the decision would be different. I don't want a life of in & out the hospital for Mylah. I don't want her suffering or in pain. I don't want her to have numerous surgeries.

Today, as I type this entry is the beginning of a life that only few know about.  The prognosis is scary. To be told that your child could potentially have a machine helping them breathe for the rest of their life is very overwhelming & sad. There are feelings of guilt, regret, uncertainty, anger, & envy. I mean the list could go on and on.  There is also HOPE, JOY, ANTICIPATION & HAPPINESS.

The HOPE that she will not need to have the ventilator for the rest of her life. I've heard from a number of parents who were given the same information, but their children defied the odds and are either totally vent free or on the vent partially.

The JOY that she will eventually get to go home. Home where she belongs. There are some significant changes that will need to happen in our household, but we are making preparations to do what's necessary for Mylah.

The ANTICIPATION of what this trach will do for Mylah. How will it help her? How will it change her. What will she grow to do?

The HAPPINESS that she is still here. Defying odds each and every day.

When I signed the consent for her surgery I felt so bad. I felt like I was signing her life away. I cried & cried.  The devil was trying to steal my joy. As he was trying to steal my joy GOD sent his people to me to show me that it's not as bad as I was thinking. I met 2 families whose child was trached. One family, their daughter wasn't vent dependent, but I got to see what the trach looked like.  The other family, their  9month old twin son was vent dependent.  He had never been home.  His parents were preparing to take him home for the1st time. GOD will always place you in a situation to show you that there are others out here whose journey is just as hard if not HARDER than yours.  As I left the room of that family I could't help but be so thankful. Mylah had 3 wonderful months at home with us. We could do this.

The vast amount of information the hospital gives you is EXTREMELY overwhelming.

First the trach surgery, then Mylah has to remain stable/still for 1 week to allow the track to heal some. After 1 week they will start to change out the trach tube in her throat.  In order for Mylah to be  placed on the ventilator that she will be on at home, she must first be 5kg (approx 11lbs). Mylah is currently 3.5kg. Trisomy children sometimes have a hard time gaining weight. So she must remain in the hospital until she gains that weight.  After she is up to the preferred weight, she will then be placed on the ventilator system that we will have at home & moved to the vent stabilization floor.  She will remain there and we will undergo 4 weeks of "training". We will become the experts in her trachea care.  After the 12 weeks, there is a 12 hour shift when the parents must do all the care themselves (a nurse is still with us). After which, the hospital will house us in the hotel on campus for 2 days for a "trial run" then we become eligible to go home. IF our home passes the home inspection needed to ensure that our electrical system is up to code; which I can already say is not.
Letters have to be sent to our local fire department & police department.  We must also notify the electric company that we have a vent dependent child in the case of a power outage, we need to be considered "priority residents".  Not sure if they know where WE live.  Do you now understand how one could want to crawl under a rock?

But we will press on.... We will gradually be able to check each "to do" item off the list. I have faith and believe that HE will make everything alright. Things will fall into place. I can't say that I won't stress about it, because this is very stressful, but we will get through.

Please continue to pray for Mylah. Pray that she recovers, pray that she regains her strength, pray that she gains weight, pray that the cartilage in her lungs gets stronger and that she won't need the ventilation support for long.

I thank you for your continued support and encouragement.

Monday, July 30, 2012

Decisions....

It was discovered Friday that Mylah has a respiratory issue which caused her episode that returned her to the ICU last week. Today we were informed that she will require a tracheostomy & support from a ventilator 24/7 in order to maintain a open airway & keep her breathing. It's a very sad development for us because Mylah seemed to be recovering well.
Today was very, VERY, hard hearing about this because Mylah never had any issues breathing before that would have prepared us for what we were told today.

Just pray for us as we have some life changing decisions to make in the coming days. Continue to pray for Mylah, her strength, & her recovery. Pray that the LORD strengthens her airway so that this may be a temporary problem. Pray for our family, Pray that we are guided to make the right decision.

I'm in too much pain to go into full details. Please pray for my strength.

Wednesday, July 25, 2012

Photos...

Here are the photos that Mylah's Auntie Sherry shot before her heart surgery.

Sherry Kruzman is an awesome photographer and I can't wait for the next session we have with her!
All because 2 people fell in LOVE.....

Bracelet made by her Aunt Danielle P. (Mylah's hand is covering up the "H")

Daddy's Little Sunshine... 

Those beautiful eyes....

Mommy's little Butterfly..

Perkins Family
1 Samuel 1:27-"For this child I prayed; and the LORD hath given me my petition which I asked of him" (KJV)