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.