Monday, July 30, 2012

Micah at Virtua


Micah was immediately taken to the Special Care Unit right after she was born because of "low tone."  If you aren't familiar with low tone it is when babies have close to no muscle tone/strength all throughout their bodies(low tone also affects the digestive system as well as eating and sucking).  The minute Micah was born she couldn't move any of her extremities and she could not swallow or suck, this resolved the mystery to why I had so much fluid (she wasn't swallowing any of it in the womb).  The nurses then began to talk about transporting her to CHOP for further testing to figure out WHAT caused this.  We stayed at Virtua through the weekend because they scheduled her transport on Monday. That actually worked out great because I wasn't cleared to leave the hospital until Monday anyway.  At the same time those two days were torture because we just wanted answers.  We were so worried about what could be wrong with our precious little girl.  It was devastating to see her laying in her incubator NOT MOVING. I hated seeing the doctors evaluate her. They would pick her up and you would just see her head and extremities just flop down towards her bed.  It was also torture not being able to hold her whenever we wanted. 

 We did see some progress after the 1st night, she was starting to grip our fingers and it was the best feeling in the world. We knew from that moment on that she was going to be a fighter and she was going to get stronger and stronger every day.  

 Here she is, adorable as ever, in her cute little knit hat.   


 Bill and I were both able to do skin to skin (kangaroo care) twice a day but that was the only time we could hold her. I will never forget the first time we did it. I was terrified to pick up her little flimsy body.


THANK YOU FAMILY AND FRIENDS!!!

We  want to thank everyone that came to visit Micah at Virtua. All of your well wishes and prayers have been greatly appreciated.  We also want to thank those who brought us clothes for Micah because we all know I had a fully organized closet filled with boy's clothes. It really meant a lot to have all of you there to support us, We <3 U!


Here are some pics of our little visitors....


Me and my 4yr old niece Anna (she can always put a smile on my face)


FAMILY MAKES EVERYTHING BETTER <3 


<3 My sister Julie and our niece Eva the diva <3


Back to Micah's Progress.....Monday came and we got the call early on that Micah would be leaving Virtua at 1130am.  We immediately went down to the special care unit to say goodbye to her and the CHOP transport team was already loading her into a travel incubator. It was so upsetting to say goodbye to her but we knew she was going to a great place. We then rushed back to our room, packed up and headed over to CHOP. We had no idea what to expect but we were excited to finally get some answers.  

I was actually sad to leave Virtua because I got so accustomed to our routine. (pumping, getting meds from my AWESOME nurses, taking a very short walk to go see Micah whenever we wanted, having family come visit me every day and just spending every second with the love of my life thinking about our new baby girl).  I was so torn about leaving because I knew it was going to be tough going to CHOP every day to be with Micah and trying to recover from a c-section at the same time.

Along with leaving Virtua here are some of my other low moments: 
 *pumping every 2 hours not knowing if Micah would ever be able to digest my milk
 *going to sleep every night feeling guilty that I couldn't be right next to her
*watching her lay there not moving and thinking is this it for her?
*not knowing if she is struggling or will struggle the rest of her life 
and worst of all...
 *feeling like it was my fault that she was born this way and wondering if there was something I did wrong during my pregnancy. 

I know you are all saying in your heads, "OMG Michelle, stop you are being silly" but I know it's normal to have those feelings and it's normal to get passed them, which I already have.  You just have to move on and focus on the positives.  Can someone please remind me of that every other day because I keep forgetting my own advice?


We Heart Micah!  





7 comments:

  1. Both of you are wonderful people who have a gift for educating and caring for children. I am not an extremely religious person, but I do believe that there is a God, and that he only chooses the strongest and most loving people to deal with these kinds of hardships. Even though it doesn't seem fair, God wants the children who need extra care, extra love, extra thought to be with parents who can undoubtedly give that to them. My brother, Mark has Duchenne Muscular Dystrophy, and although it has been a hard journey for my family and especially for my mother, I am thankful that my brother has someone like my Mom to care for him so amazingly. Your family is in my thoughts constantly, and my heart goes out to you. I am so glad to hear that she has made progress and I know that she will continue to do so. Your guilty thoughts are natural, but please try not to think that way. There is often no explanation for things like this.
    I'm not sure if "low tone" and Hypotonia are the same, but if so, I have experience with babies with Hypotonia and can give you some advice (although I'm sure you already know more than I do). Regardless of what baby Micah's situation winds up being, I want to tell you to trust your gut. If you have a feeling, push it to the doctors you meet with, even if they seem dismissive. It's called a mother's intuition for a reason, and the best thing you can do for Micah is to make sure you have all of your bases covered and have as much information as possible. Secondly, physical therapy as early as possible is amazing. I have been involved with and know the stories of many children with a range of conditions through my volunteer work and acquaintances over the years, and I promise that there is nothing that will help Micah reach important milestones like crawling and walking and keep her healthier than a good physical therapist early on. Third, let people help you. In this stressful time, to be the best parent possible, you can't overload yourself with all of the responsibilities and worries that come along with a new baby and an unknown path ahead. By letting other people help you and your family, you'll be even more focused and positive for your daughter. If there is anything I can do, please don't hesitate to ask. I know I haven't seen you in years but you were always one of my favorite teachers and I would love to help. I would love to cook a big freezable dinner for you two so that on busy days of going back and forth to visit Micah or go to appointments you wouldn't have to cook afterwards, and if you ever need someone to run a few errands for you, just let me know. This isn't just me offering to be nice-- I would truly enjoy to do so, so take me up on it!
    I know this is ridiculously long already, and I could type forever, but I will try to wrap this up. I know in my heart that Micah will grow stronger and healthier and you both will be amazing parents. Thank you for keeping us updated and you are in everyone's thoughts and prayers <3 All the best to you and your family!
    -Morgan

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  2. Michelle, you are an angel on earth, put here for your daughter!!! God seriously has great plans for the three of you! I am so excited to read this blog And read the amazing progress Micah will be having! You are one amazing women! I can tell just from reading your post and blog! You are an amazing writer and it shows what an amazing person you are!!! great things are on the horizon girl....I'm. Praying for ya!!!!!!

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    1. Thank you very much Jessica! Thanks for reaching out =) We appreciate all of the prayers!!!!

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  3. I am tearing up just reading this! You have an amazing support system and are an amazing person!!! Micah is very lucky to have you!! Please keep writing this blog- trust me it will help you more than you know! Micah will get stronger everyday- and so will you!! Thinking and praying for you both!

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    1. Thanks Mary Ellen! We ARE very lucky to have such a great support system. I'm so glad you stopped by I'll be posting more tonight =) stay tuned.....

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  4. You will be a wonderful mother! I also went home without my child, though for not as long as you and Bill are dealing with. Do not second guess yourself ... there is nothing that could have been done differently. You had a very healthy pregnancy ... some things just are. Micah will continue to thrive due to the support from both of you and will be home soon. Keep faith, and I'll keep sending prayers and good thoughts your way!

    Christine

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  5. I saw a link to your blog thru Kristine Ryan. My prayers go out to all of you, and to little Micah, who is a fighter, and will overcome whatever obstacles she faces, because of the love and nurturing you surround her with! Blessings to all of you

    Nancy

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