New every morning! Those Mercies sure sweep me up!

Since being home I was struggling with Exhaustion and the internal battle of having what it takes to walk this road all over again with our children. The hospital stay made me AWARE, too aware for my heart and minds capacity. I have learned to live in the moment, for the sake of protecting my mind and heart. If I think to far ahead it is to much to carry. 

If I stay in today, sometimes breath by breath I am a much more loving, compassionate and aware of others. In the medical world you can't live that way, everyone wants to remind you what's going on. For example, every nurse we had was baffled and wanted to talk about how on earth Genevieve was so functional as a "heart baby". How has she been at home with no machines or oxygen up into this point and then they insert a story with how there experiences with babies with a similar defect lived in the hospital. Or ultimately had a transplant or died. Yep, they are that Honest, I mean come on people, help a Mommas heart out! I know from experience in this world that Heart babies are some of the sickest and fussiest, that there quality of life is limited at best and that there parents live a VERY medically driven life. 

Well this is when I get to tell them about all of you praying and Believing for Genevieve and when I get to tell them about the promises I know whispered to my heart over her life. That she will live and that she will be "a woman of the people". To me she has become that, in her short little 5 months, she loves people, she would rather stare into someones eyes than watch any toy. Darling little heart winner indeed! 

So at home I struggled through and yesterday was exceptionally rough, Genevieve was unhappy, fussy and throwing up (which are all signs of shunt issues). So after figuring out the logistics we headed up to Children's Emergency Department and got her checked out. They did a shunt series, which x-rays and ct scans and everything looked good. Then they did a shunt Tap, which is where they take fluid out of the shunt to test for infection. They admitted us to wait on that culture growing and give her IV fluids and make sure she was not continuing to vomit. 

On the good side, she did well overnight and the cultures thus far have come back negative. The Neuro and Cardiology team are summing it up to post op drug rejecting, or a virus, that came and went fast. I am hoping and praying that is the case. We were up every hour snuggling, so sleep deprivation is in full effect again.

Somewhere in the process, between time with Mike on the way to the ER (so sad but true, where valuable time gets found in our lives), friends praying for me, a chat with a heart friend (who laughs with me at Hospital life, cause she currently is living here), and the perspective that Genevieve is Alive and that is in itself ENOUGH to Celebrate and remember daily. I have found breakthrough this morning in my heart. Time with people I love usually does that! You think I would know that about myself, still learning myself and learning to Believe in who I am in some ways too (whole other topic)!

I woke up with this verse on my heart and mind. I love it because it is true. When I can feel consumed by the overwhelming world of medical life, I am met just in time By God's intimate love, compassion and Amazing Faithfulness to help me again and again.

"Because of the Lord’s great love we are not consumed,
  for his compassions or mercies never fail.
23 They are new every morning;great is your faithfulness" Lamentation 3:23

Keep those prayers coming as this month is FULL of appointments and Dr.'s and we need time to prep in our house and mentally for this upcoming stint of me being away from home with Veve! Love to you all!

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.

Foot Surgery, Moving and Open Heart surgery...

I mean the title has gotta be some kind of joke right?

Nope this is our world right now. Since Labor day weekend we have been cleaning, packing, Hosting beautiful friends, rearranging rooms and planning towards a restful end that was to begin mid October. Here I am the other side of most of the frenzy and Clinging to God and his faithfulness to us.

I am sure that each day would take me under outside of Him. Three weeks ago, tuesday Phoenix had a foot surgery that went perfect, not an issue to be found. It is rare that I feel thankful for Phoe's inability to feel below his waist, but these past weeks I am. They moved bones around and cut his heel cord to loosen up the tightness and realign his foot to a neutral position. If that lingo is way over your head ( which I understand), it was a surgery to align his feet for standing and sitting correctly in all his equipment and will help with correct posture and a long list of other benefits.

Hospital life is so much a part of who we are that I feel used to the realities of it. Surgery is another world that I forget the realities of, until I am in the midst of it. Mike and I handle Big situations the same way. By that I mean we always struggle with the same things. I get anxious towards the end of waiting and I hate the idea of Phoenix waking up without us there. He stays calm through the surgery and I watch tension overtake him as soon as Phoe's in our presence. So we are always learning to help one another through the bumpy moments. This surgery was basic and short only an 1 1/2 but in reality from start to finish, it's 4 plus hours before we're all settled into our room.

Needless to say I knew that Penelope's heart surgery would be a fierce reality check for me. I was both ready for the inevitable open heart surgery to be over. And the meltdown I anticipated coming after. We have been waiting 6 months for this day and at the same time buying up every ounce of life before surgery. Here we are a week on the other side of it and I am still processing through. Actually wanted to delete and rewrite this post a million times, because there is so much I can say about all the changes we have faced, but instead...

I want to say THANK YOU !! Thank you to all of you who pray, love and encourage us, we know the strength of these prayers and relationships. I have just begun to realize how overwhelming our life can be from the outside looking in and how I can feel the ability and Grace to walk through each day without a breakdown is only because of God's strength and people who walk beside us both physically and afar. We are constantly thankful for the way God has chosen to build our family and for our beautiful children. With all of our lives weighty decisions and the constant state of waiting we live in, I am thankful for an ever present God and a community of the richness of Grace and care! We have been blown away!

We moved into a home about 5 minutes away. Some of our close friends are renting it to us and we are excited to have a New, wide open space. We have had tons of help and continue to have offers for help, thank you everyone. So now we are SLOWLY settling in. Rowan, Phoenix and Penelope are all settling into life and we will hopefully return to life as we know it sooner than later.

In closing, I want to say a couple things that I have grasped and learned through the WIld ride this last month plus has been.

1. LIVE in a place of DEEP THANKFULNESS at all times there is room and so much in this day to day life to be overwhelmingly thankful for.
- I met a family who has lived the entirety of their beautiful son's life in an a hospital (intensive care unit) room. 12 long months with no promise of ever bringing their son home. THAT is not our reality, Thankfulness and compassion overwhelm me!

2. God is always present, always waiting and always listening to those who cry out to him. He loves to pour out his Grace and to break in to our moment to moment life. Prayer works, Trust in it!

3. That Miracles happen everyday in forms we are TOO familar with, like the medical field. BUT let us not overlook the MIRACLE that they are. My daughter has a NEW HEART, because of a Surgeoun's hands, brillant minds and most of all a Sovereign God who gives all ability and wisdom.

4. That we Reuwers are a loved family and graced with so much richness in family and friendship, it can be overwhelming, but I am so THANKFUL.

There is SO SO much more but I'll save it for another post 3 months from now, ha ha!