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.


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