Wednesday, July 31, 2013

Nothing is as it seems. The LONG and short of it all...

Quickly trying to compose my thoughts into a post. The last few weeks were Crazy and hard. Not because of the multiple appointments we had but because of all the other details of relationships,emotions,good reports, sick kiddos, work and life that come at us and take us by surprise. Also, that I tend to run myself into the ground sometimes, at a pace that may be a little bit manic. Juggling all of life's different roles.

 I always say it's the little things that undue me, but the Truth is that I am undone much more often than I let on. Not because I don't want anyone to know, but more because in the day to day of life, what am I going to do?? Stop and call all those whom love me and tell them how many times I cried that week and why.
Well, those would be Lenghthy converstaions and would require all my energy and so much explaination of the many dynamics involved in a day here in my life. Also, they probably wouldn't benefit anyone, leave me and you feeling overwhelmed by the mountain of life and it's challenges and unknowns.

 I do want you all to know the honest parts of our life, I want my friends and family to really understand Spina Bifida and what that really looks like for our family and Congenital Heart Defects and how BIG it really is that our girls are living life instead of waiting on a list for another babies heart. Yet, I don't know how to do that, so bear with me as I figure it all out. Mike and I are met with questions all the time that seem simple by the person asked but in true reality are as long and and deep and wide as many things in this world. Medical lives are not black and white, they are very full of lots and lots of grey and maybe a splash of pink here or there ;) I want to answer them simply, but end up feeling like I have lost most people with in 2 sentences... SO I am going to add in info., to each of my blog posts and let your learn how you will with reading!

 But really here I am at the hospital and finally finishing up a blog post I started and saved in May. I can't find the energy or time for this in the midst of appointments, 4 beauiful darling babes, church life, 2 jobs and endless day to days of to do's. But I miss it so much. Here's the update for all the time I have been away!

Genevieve has been doing well overall, last week we had a Cardiology follow up appointment and her Saturations (oxygenated blood) was in the low 70's, this was a deep decrease from 3 weeks ago, she was in the high 80's- 90's . They have no sure answers but wanted me to return this week for another monitoring session, to decide if and how soon we need to move the surgery date. The consensus is a new date will be made. Cardiothorasic surgery will be calling to give me the new date today. Veve's first heart surgery is called the Glenn Procedure, the diagnosis is not (HLHS), but the surgery is the same.

While we were here for a visit, Mike requested that Neurosurgery set- up a head ultrasound, he had suspicion the last 3 weeks that Veve's shunt was not working to full par. She has been a bit fussier than usual, but it would be difficult for us to know what that is related to. Her head scan revealed that her ventricles were fuller than they should be, which means that she has too much fluid on her brain. Resulting in the Neurosurgeoun admitting us and surgery being scheduled for this morning.

So here I am on the other side of a sleepless night. Hospital stays are full of interruptions, beeps, questions, shift changes.... Then a little baby who can't eat for 6-8 hours makes for a Long night for sweet baby girl and Momma. However, though challenging, she did overall really well and surgery went great and now onto more decisions for the Dr.'s. Please keep praying for our little doll baby as the days draw nearer for the first heart surgery.

I feel prepped in my heart, which only means, I can wrap my head around it being the time close at hand. Here at the Pediatric ICU they are baffled that she has made it this long without the surgery! A little miracle indeed, keep those prayers coming. Specifically for the upcoming heart surgery and all the possible complications, specifically her lungs to cooperate, so that we will not live hospital life long. Stay tuned, hoping to have more answers in the Am, as to a specific date.

Thank you all we love and value your prayers and love. Snuggle those you love, appreciate the beauty of this moment, and Breathe deeper and let it go, whatever you are holding onto that is Stressing you out or Holding you back.