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 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!