I can't think of a list, so here's a squirrel.

Daboyz

I don't often write about daboyz...not specifics anyway.  They are grown ups and have the right to privacy, not that they are all that interesting anyway.  But, there are some uninteresting things about them that I just love and today, I'm feeling so blessed and proud of them that I'm gonna break with tradition and talk about them.
I love that they are greater than the sum of the Mr. and I.  When the differences between us irritate me, I can pause and see how difference can also mean balance.  I am less tolerant than Dean and they've learned great kindness and gentleness from him.  He is less confrontational than me and they've learned to have confidence in their convicitions and strength to stand on their own principles from me.
I love that Jay as a single young man grocery shops and is learning to cook, and to cook healthy.  On Friday night, when he usually eats with us, we were at the Aretha Franklin concert.  Most guys would've driven through McDonalds.  He stopped at the store picked up a steak and some green beans and grilled himself dinner for one. 
I love that Mac sits outside in the backyard with a cup of coffee instead of in front of the television.
I love that Jay still comes to family holidays instead of going to his girlfriend's family.  I know that will end someday, but it will forever be a credit to his heart that he was not quick to do so.
I love that Mac calls me from work to ask me to make pinto beans and pilaf for his dinner.
I love that Jay rock climbs and Mac plays basketball with the mentally ill.
I love that Jay kisses my parents when he sees them and Mac was frustrated at missing my dad's West Virginia trip.
I love that when we can't reach one of them and the other one calls, they pick up.
I love that they talk all day long on the phone.
I love that Mac finds the neighbor's radios infuriating.  I love that Jay went out of his way to come by and lock his dad's car while we were out.

Basically, I love daboyz.

God can and often doesn't.



gritsngrace.files.wordpress.com/2007/08/jesusprayer.jpg

 I'm almost always uncomfortable when I hear someone state that God told them something.  Not in the general sense of God told them that obedience is better than sacrifice or that heaven is beautiful.  It's the specific statements that make me cringe.  The person who looks at a pregnant woman and states that God has revealed the baby's gender.  The one who responds to a request for prayer with a word of knowledge that God will perform the desired miracle.
Those are the ones.  Because not everyone who makes such statements really has a word from the Lord.
What happens when the prophesied son is born a girl?  When the proclaimed healing never happens?  Does anyone go back to ask the person...what do you say now?
We love to be on the side of the miracle-maker but we need to grow up enough to speak the words of our Savior...not my will but thine.  How much courage and anointing would it take to hold the hand of the worried husband and say, "God told me he's going to take your beloved to heaven instead of healing her."
You don't hear that too often.
I don't claim the gift of prophecy but I do have the gift of discernment.  It's a burden and an honor; one I am certainly not worthy to bear.  It's not bound by the status of my relationship with God, because God himself is not limited by my faithfulness.  Like all gifts of the Lord, it is by the will of Him that we live and move and have our being. That said, in prayer, I have moments of knowledge deep in my soul.  I have experienced countless turning points when I've been in prayer over time when I knew...the miracle wasn't coming. Miracles are minority outcomes.  That's not small faith talking, that's reality.  In truth, it takes bigger faith to worship the God whose will does not submit to ours.  It's a truer love that says to Christ, "I'm disappointed, angry and broken that you could have spared me this and didn't.  Yet, I love you, I serve you, I even thank you."  If everything counted on praying harder for the guaranteed outcome, that would be mean.  It would place greater power in our mortal hands than we are fit to wield.  Yes, we pray.  We pray for the miracle, for the answer, for the secret to be revealed.  At least I do.
When we, in our zeal to speak faith, speak wrongly; we hurt the hearer.  We state by the power of the blood of Jesus that someone will be healed of cancer and the person passes.  What becomes of the vulnerable and desperate loved ones who wrapped their hope around the promise of a man.  God forgive us, should that moment of zeal create a chasm between the Lord and the one who believed in the promised miracle.  God help us, should our words stem the flow of healing and strength flowing from the throne because we've convinced people they don't need it since, any minute now, Lazarus will rise. 
Let's grow up beyond faith measured in miracles only.  This I say as someone who believes in miracles and has experienced them first hand over and over.  Yes, I ask for God to do the impossible.  I believe in his ability.  I also think it is impossible that birds should fly or the sun should rise or that the love of Jesus is greater than my sin...so why not cancer healed or health restored?  Of course!
It is the one who is like Jacob wrestling with the angel who finds the miracle of peace.  It is in the darkest night insisting, "I will not let go until you bless me," and then living with the limp of God's will that the soul finally awakens to cry "Hallelujah!"
My God, my God...you are truly my portion.  There is no pain that cannot be healed by your hand over my brokenness.  Help us, help us, help us.
Make us into people who do not need to promise earthly miracles in order to speak of miraculous things.

Then he said to them, "The Sabbath was made for man, not man for the Sabbath."

Mark 2:27

Ten Again

1. Went to the Aretha Franklin concert Friday night...she sang my favorite-Bridge Over Troubled Waters!
2. Lord help these children, my unit at the hospital is terrible. 
3. What a beautiful morning we're having, gonna head to the back porch in a minute.
4. Thank you to my mom for a big ol' bag o'pajamas for my patients!
5. Mac has torn two sets of scrubs doing physical management of patients this week, we may need a scrub drive instead of a pajamas drive.
6. I love Cream of Wheat.  Don't have it, just enjoy it.
7. Belly ache today.
8. Dean's playing at the Monroe Theatre this evening, tickets still available.  I have no idea how much they cost.  Less than Aretha probably.
9. The Mr. is picking up his Father's Day/Birthday gift...a new grill!

10. In the meantime, he's using my keys because he lost his.  I do not understand putting your stuff in a different places all over the house.  We have key hooks at the back door.  Seriously, can I get a witness!  Stuff goes in proper places!

Spiritual Geocaching

With insomnia and now what seems to be an ulcer, I am reminded in no uncertain terms that stress won't go away and I cannot fix everything.  What I have to do is seek out goodness and quietness, peacefulness, sweetness, holiness and all things that reflect God's face.

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things...Philippians 4:8

This can't happen accidentally, one must be purposeful and seek out the things in life that restore a sense of rightness to the heart.  If life is a set of scales, there is much on the side of burden and stress.  I have to then be sure I add much to the side of joy. It makes sense that in this fallen world, it will take a bit of effort to fill the joy side.  And the first roadblock of the enemy is simply to distract us, keep us from noticing how much good there is. 
So I do things like watch The Waltons.  My menfolk roll their eyes and make fun of me and then sit down and watch too.  I have this theory that something about putting The Waltons or Little House or I Love Lucy on the television brings a spirit of more innocent times into our home.  I soak in the details of that big old house on Walton's Mountain, I see the best of what we can be in such fully developed characters that I can imagine living next door to them.  I am reminded by the simple lessons of honor and expectations how much better we can be, and have been, and should be. Yes, all of that from reruns of The Waltons on GMC (Gospel Music Channel.)  I believe that with all of the mess, sin and degradation that swirls outside of my home, I can still restore a gentler and more innocent time inside the walls of this house.  The great commission sends us out into the world, and we must obey.  But it will take its toll if we do not have a haven in which to be washed clean and refilled with sweetness. 
Have you heard of geocaching?  It's an activity where you get coordinates on your GPS and following them, find a small treasure someone has left for your discovery.  Usually, it's a simple treasure...a bunch of buttons or a small toy.  Something silly and innocent.  Stress management is a lot like that.  You must look intentionally for the small silly innocent treasure.  If you were just strolling through a park without looking for the geocache, you'd walk right on by without noticing the little box under the bench with a set of jacks inside.
Reserve some of your energy, some of that intention you direct toward fixing problems and finding solutions or just flat out worrying and even praying.  God wants your spirit to rest and to refill your soul.  Pop some popcorn on top of the stove and cover it in butter and salt.  Find The Waltons on TV and watch it on a non HD channel.  Make a pitcher of iced tea and put your glass in the freezer for a bit before you fill it.  Draw the blinds and find an old quilt. 
There is a geocache of the heart waiting for your discovery.

Argh!

Fearsome chimunk!

After a humid hot yesterday, this morning brings sweet cool breezes.   I love turning off the air conditioning and opening the windows!  I have to get rather uncomfortably warm before I turn the air on in the first place.  But really, a cup of coffee on a summer morning is just meant to be enjoyed with unconditioned air. 

I'm a bit frustrated with my gardens at the moment.  The berry patch is thriving and I'll tell you about my shameful few veggies later.  My container herb garden is thick and green and could anything smell better?  So it's really not my gardens, it's my berm.  Argh you berm!!! 

Two of the little shrubs we planted didn't make it.  Probably a soil acidity mismatch, possibly those chipmunks who are growing less cute by the day.  An entire flat of annuals croaked and this was chipmunk sabotage with a little help from a certain hound dog who enjoys a daily walk around the berm and a nap in the dirt.

My marigolds even wilted, aren't they supposed to be fool-proof? 

Argh!!

Oh, and the ornamental grass?  It's dying slowly.  The Mr. denies it but it is.  Again, I suspect that the chipmunks and the hound dog are contributing to the inhospitable growing environment. 

What I really want to do is pull out all of the browning and wilting plants and run to the nursery to purchase more stuff to plant.  But there is not a bottomless berm fund from which to draw and alas, I must rein myself in.  Ironically, you wanna know what's thriving?  Not the expensive English Gardens annuals.  Not the expensive ornamental grass ($18/plant.)  Nope.  It's the clearance plants!  The mostly dead geraniums that I stuck into my window box and the mini petunias that were barely green are lush and lovely.  And my gabera daisy?  I ACTUALLY HAVE A NEW BLOSSOM ON MY GABERA DAISY!  And they said it couldn't be done!  I paid $1 for that sucker and all of the online wisdom says it is an impossible plant to maintain. 

Actually, in my yard, marigolds from English Gardens are the delicate breed.

Argh!

Well, I'm not going to rush out to spend money not budgeted for more plants.  I'm gonna head out there shortly and pull some weeds and do a little outdoor housekeeping and let it go.   The Mr. has been giving the plants a good soaking daily with the sprinklers and I'm going to give it a Weed & Feed today and that's that.

So, how does your garden grow?

10

1. Today is Baby Rowan's funeral, will you pray for her family?

2. Tomorrow the family is coming for Father's Day and birthday celebrations (The Mr., Jay & Amy.)

3. I'm still not able to eat much, it's trial and error.  But it's better!

4. Why am I not skinny yet?

5. I got two little summer dresses from Kohl's for $14 each. 

6. I'm obsessed with fake pony tails at the moment.

7. My flowers look awful, so frustrating!

8. It's hot hot hot in the Mitten.

9. I dreamt my mom started a business selling boiled eggs and was very successful.

10. We have quite a few severely autistic kids on our unit right now, please pray for them and that we will have wisdom to take good care of these very special children.  Being hospitalized is so hard on autistic kids and if they are with us, it's because they are being violent at home.  I truly believe that we need the anointing of the Holy Spirit to reach out to them.  Mac has a special softness and ability with these kids and covets your prayers as he tries to connect to them.  He ran himself ragged last night working exclusively with two boys no one else could manage.

So blow the candles out my dear and make your dreams come true!



Happy birthday to my Mr. and my Sister!



Hot dogs, raspberries & Rowan

Up early this morning, paying the price for indulging in a grilled hot dog yesterday for dinner...LOL.  I knew it was a bad idea but seriously, is there anything better than a grilled hot dog?  When I got home from work the Mr. was just finishing dogs and burgers on the grill.  I made an informed decision to eat a dog and pay the price.  Of course, now I'm thinking the price was a bit expensive ;)  I've been on a mostly liquid diet for almost a week and Protonix as well so the pain isn't as bad as it was a week ago when I went to the hospital.  I'll survive and perhaps learn not to eat a hot dog for dinner.  Nah, I'll just survive.
Foremost on my heart is still Rowan and her family.  When I think I'm all out, fresh tears flow again.  I don't feel the need to stop crying, this is God's way of washing away our grief to plant the seeds of peace so I just sit here and do the ugly cry until the peace settles.  This morning after a few minutes of crying the old song floated gently through my mind...Jesus, Jesus, Jesus, there's just something about that name.  How sweet the peace of God is, passing all understanding.  Christians need to be careful that they don't try to skip the grief part of loss, falsely believing that if we are people of faith we should just claim the will of God and move on as though our hearts don't break.  God is the author of every emotion including sadness.  So I am on, what, two weeks of crying every morning?  I've cried throughout the day, but certainly my mornings have started with prayer and tears.  Even in pain, prayer and tears is a good start to the day.
Yesterday afternoon (pre-hotdog) was the first time in a week I felt well enough to spend a few minutes in the back yard.  Lord help my gardens!  The Mr. was in charge of the watering and I am not sure he saturated the ground quite enough.  I also suspect the adorable chipmunks around here of eating my flowers and shrubs.  Do chipmunks do that?  I don't want to accuse them unfairly.  Of course, having a 65 pound hound dog take naps on top of your petunias and dig holes under your baby shrubs to sleep in probably doesn't help.  And the weekly Weed & Feed watering that happens on Saturdays didn't happen.  Oh, my poor gardens.  It's ugly.  I'll just admit it, it's ugly.  I did a little pruning, a little deadheading and a lot of watering yesterday evening but I think there are some plants that are just goners.  I started to get frustrated but then I decided to get some perspective.  The evening was cool and breezy and I was well enough to enjoy it and let's be honest; there is loss in our lives worthy of tears and there is loss that is worthy of a shrug of the shoulders.  A six month old beautiful baby girl has printed that lesson on my soul.
After pruning and deadheading and telling Donny he was ruining my flower garden I headed to the berry patch.  I think the strawberries are done, no more fruit to be found under the leaves.  But!  This is very exciting, the raspberries and blackberries are budding!  This made me stand there with my garden hose and cry some more!  Why?  Because raspberries and blackberries remind me of Rowan's grandma, Mrs. Mac.  Mrs. Mac and I had a lengthy FB conversation last week as we prayed for Rowan about my raspberries and blackberries and their disappointing lack of fruit over the last few years.  Mrs. Mac & I take great stock in all things involving playing in dirt.  Last night, the in cool calm dusk,  there they were, beautiful baby raspberries and blackberries.  So on one side of the yard, dried out ugly half dead flowers and shrubs but on the other...beautiful fruit is growing in the sunshine.  I'll let you decide if there is a metaphor there.  I've decided to rest my mind from such deep thinking and just let God's creation place patches of joy over the wounds in my heart.  As for the casualties on the other half of the yard, I'll worry about that on another day.  No I won't, I won't worry about it at all.  If I cannot revive them by the weekend, I'll just go look at my berry patch and smile.
Thank you Rowan. 

Baby Rowan

Precious Baby Rowan has received her perfect healing and is now home with her heavenly father. I can't express enough thank yous for all the prayers said on her behalf. Please continue to hold the family up in prayer at this difficult time. Here is Katie's last update.



We waited for about three hours for an update. I spent time with Jake playing trying to get my mind off of things... cuz all I've been doing is crying when alone. They came out after an eternity and said that her tricuspid valve didn't look like it needed to be replaced after all. Very minor leaking. They were trying to wean her off ecmo but she was having difficulty. They said they usually try to be optimistic but she was having such a hard time. I hate statistics but had to ask. Dr. Carl shook his head and said less than 5 % survival. About ten minutes later dr Carl came in with two nurses and I could tell with the look on his face. He shook his head again and said that Rowan didn't make it. we have spent the last 4 hours rocking hugging kissing

Crying and making as many mementos as possible. I had my same photographer come and take pics. Pics for me and Ryan my family, and a few special for Jake to remember his sister by. My heart is broken but I know hers is whole again and her fight is over. I have a beautiful angel watching over me now. I know this with my birthday is 3/3 and hers is 12/12 and she passed at 3:12pm. It was her saying goodbye mommy I love you and thanks for being my Mom. Thanks you Rowan for being such an inspiration to so many and I promise I will continue to fight and let your light shine on sweet one.

My sweet sparrow fly high

Your heart is whole and body healed as you make your journey to the sky

The Lord's lovingkindness & mercy...

Submitting myself to God

I've not been feeling my best for several days now.  Does anyone have the feeling of being a little nuts and hesitant to keep going back to the doctor when all of the tests say everything is fine?  After 24 hours in the hospital and being "cleared,"  I keep thinking maybe I'm over reacting to my discomfort.  But there's a gentle nudging in my spirit to pursue this and so I will. 
It actually takes some degree of courage to keep pushing for answers.  I know my boss is frustrated with my time off; especially when I have to report back that everything is normal.  It gets increasingly difficult to tell doctors what's going on & that I'm not comfortable just brushing it off.  Until I'm satisfied with the answers, I need to keep asking the questions. 
While I'm pursuing answers in the natural, I am also trying to open my heart to the reasons in the supernatural.  I live in the palm of God's hand and my body is his.  If there is pain in my body, it is there with his permission.  It has occurred to me that the slowness of medical answers is purposeful in the Lord's plan.  It has me quieting myself and asking, "What is it that you want of me?  What is your reason?"  I hunger more for understanding the will of God than for the relief of my symptoms.  I can live within an imperfect body but I am realizing, I cannot live without yielding to the hand of Jesus. 
Is there stress in my life that I am actually causing because I am not managing things correctly?
Is there stress in my life that God has given me permission to walk away from, but my lack of faith keeps me paralyzed?  In fact, is God trying to get my attention with this unpleasantness to turn me in another direction? 
I know for certain that there is stress and that it contributes to (if not causes altogether,) my unwellness.  I have presumed that I needed to do a better job of managing things so that the stress would decrease.  Work harder, do better and the pressure will be relieved.  But what if God is allowing the pressure to build because he is telling me that his next step for me is away from the fire, not further in?  As I have been sidelined these last few days and tried to examine my circumstances, I am just starting to see something.  Off in the distance and just coming into focus is an image...
It is a person standing on the horizon waving his arms and shouting at me, "Turn around, not this way!"  Still I continue forward ignoring the warnings.  "Turn around!"  As I draw closer, I see more.  Behind the waving arms and shouted warnings is a cliff.  If I ignore the shouts and push forward, I will walk myself right off of  it.  Is my "illness" really the arms of God waving, "Turn around!"
Just calling off work has been an act of faith that I've not managed with particular dignity and peace.  While I've never doubted God's ability to fix my body, I've only just now realized that my prayer must be for favor as well.  God's love for me covers the entirety of my life.   If God does not choose to relieve my illness, I have to trust him to soften the hearts of people who are affected by my situation. 
I have found the root of the chaos in my thoughts; I suspect that walking away from my stress will relieve my body.  It's what I want, to take a different path.  But my faith remains small, so small that I cannot reconcile that the deepest desire of my heart is the very thing that God is almost forcing me to pursue.  How silly it is and yet here I am, struggling with the idea that God may not require me to do the hard thing.  My heart aligned with his, would that not be the very thing that the enemy would want to confuse?  A breakthrough for me perhaps. 
My daydreams may very well be the Holy Spirit's attempt to open my eyes to the next wonderful thing.  Is it so hard to believe, that he would give me the desires of my heart?  In this moment, I bow myself to the Lord's will and thank him for this mysterious illness.  I submit myself to his blessing.

Rowan's Story



Mama Katie & Rowan June 1, 2012

 Hello, my name is Katie St. Marie. Wife to Ryan, mother to Jacob (5 years old) and Rowan (6 months). Thank you for your interest in our daughter's (and family's) special story. That story began before she was even born. We first found out we were expecting our second child in April 2011 and were so thrilled after almost a year of trying. The first half of my pregnancy was pretty uneventful thankfully. August 1st was my 19-week anatomy scan and big gender reveal. We decided to have some family and our son there (he was very convinced he was getting a baby brother!!) I left work early to get to my appointment and felt some anxiety that I'm sure all moms-to-be feel before such a huge appointment. I prayed that my child growing inside would be healthy and safe. During the ultrasound I asked the tech if everything was looking good. "Everything is looking great so Far." okay. My nerves calmed a little. She made the announcement that Jake would be getting a sister! (He argued the fact and said there must be a twin brother in there somewhere!)


She continued and kept taking pictures, more pictures, and focused pictures on her heart, she wasn't seeing what she needed. She said nervously as she grabbed the long strip of printed pictures "I'll be right back" and left the room. I panicked and glanced at my family and said "that's never a good sign" what could possibly be wrong that she needed to leave.

She came back in a few minutes later (an eternity) and said point blank "I'm sorry there is something wrong with your baby's heart, you will have to be referred to a specialist and there isn't much more I can tell you other than it looks like hypoplastic left heart syndrome"

Ummmmmmmm..... What now? I don't know what that means. What it is, and you have to be mistaken. Your wrong. I started crying I got up, wiped the gel off my belly and ran to the bathroom. I came out some time later and hugged my OB. She told me they would call with an appointment with a perinatologist and to not go home and google. (I think every doctor says that and every parent goes home and googles).

I went home, cried, screamed, and sunk into a black hole. I see "multiple open heart surgeries" transplants, high mortality rates and stories of babies that have passed online. I was in denial, anger, asked "why my baby, why my family, why me?"

I had to wait until August 4th for my appt with the specialist. Those were the longest most agonizing days I've ever experienced. Google is a dangerous weapon in the hands of a newly diagnosed and distraught parent.

I lay on that table trembling with anxiety and grasping onto my husbands hands. They did a very detailed scan and measured everything. The perinatologist came in and talked after and they confirmed that my precious daughter did in fact have HLHS and we would need to be followed closely by a pediatric cardiologist as well them. What is HLHS exactly? The entire left side of her heart wasn't there, or was severely underdeveloped. What did this mean? Her left ventricle responsible for pumping oxygenated blood systemically was absent. She would not survive without surgery and medications right after birth, and at least two more surgeries to get her heart to function using one ventricle.

That was a hard and bitter pill to swallow. But we wanted to give this miracle every chance we could give her.

So I went to my appointments, monthly, then weekly, then sometimes multiple appointments in one day.

I transferred all my care to a

Children's hospital 35 minutes away and found a new OB to take over my care as well so I could deliver at the same hospital.

As we neared my December 25th due date I knew something big was gonna happen. My life would be forever changed. I would have to leave my job, we would probably have to find somewhere else to live, I would stay at home after her birth and recovery and become a mother again and nurse. I prayed that God would give me strength and guidance for this new journey I was about to embark on.

•December 12, 2011• 10:02 AM

5lbs 8 oz 18 3/4 inches long

A induced and very smooth and fast delivery (and dare I should say easy?) my perfect daughter was born to an audience of doctors nurses and it seemed like the number multiplied with every push.

She was here all swaddled with her hands on her cheeks, lips puckered and her button nose sticking out. The first part of her I touched was that button nose. I had about 5 minutes to hold her I told hubby "snap some pictures!" she stayed in the NICU until December 16th.

Morning transport came and took her down to pre op holding. Signing the consent and seeing my newborn being taken away was so difficult. Ask any heart parent, or any parent with a medically fragile child. She had her hybrid Norwood surgery and came out looking great, doing great. A week later however one of her cardiologist told me there was a chance they would need to take her back into surgery for some pulmonary artery band adjustments. They were just a little too tight after she had settled and they would keep adequate blood flow from going to her lungs. So December 22nd we sent her off again. This wasn't any easier but was necessary. We finally got our "walking papers" aka got discharged from the hospital December 29th. So scary and a blur I thought how I could possibly care for her BY MYSELF AT HOME WITHOUT NURSING STAFF. She required medications multiple doses a day, getting her weight and o2 saturation, heart rate to be charted and called in twice a week to her cardiologist. We somehow made it 12 days at home before being readmitted for a cath lab to have her atrial septum widened. What was supposed to be a three-day expected stay turned out to be almost two weeks. Rowan threw a few tricks and we were reminded again just how delicate these heart babies are. Seriously. A fine balance between stable and unstable. One pebble can tip their scale so fast. We continued on at home and finding easier ways to manage our hectic schedules. On top of her heart issue Rowan also has severe reflux (GERD) and could not keep down food even with her NG feeding tube. We tried a special tube that goes past the stomach (ND) but after multiple tubes being pulled out, MULTIPLE ER trips, Ro went in to have her third surgery March 13th, to have a G-tube and fundoplication. This kept her food down and a longer-term solution for her eating issues. We were gearing up for her second (and largest) heart surgery. She needed to be as plump and healthy as possible and her doctors were aiming for the 6-month mark. One thing about Rowan is that she has her own plans and runs her own show. She has never "made it easy" for anyone but that lends light to her feisty fighting spirit. That's what makes her so special. She keeps you guessing, smiling, and her smiles ARE CONTAGIOUS. The weeks leading up to her second surgery (comprehensive stage II) we found ourselves in and out of the PICU (Pediatric intensive care unit) multiple times to get her fluid levels correct with her diuretics. The last few weeks prior to surgery she required constant o2 monitoring and oxygen. I was growing very anxious with the huge surgery looming over our heads. Most everyone I had talked to in my Heart Mamas (support group) said life was so much easier after the second surgery. Your child is more stable and life calms down for the most part. We could plan small day trips, and beach time and play dates. We COULD get past this hurdle but we had to take that next step. Surgery crept up and our date was June 1st. I was scared out of my mind pushing thoughts of doubt and uncertainty around in my head. Would I bring Rowan home again? Would I need to order her medical supplies for June? Do I buy her summer clothes? No one wants to think about their living child in the past tense in that way. But it is a very real concern, a valid fear, and possibility for us heart moms and dads. We could possibly not be bringing her home again, or to grandmas, or anywhere again. We checked in two days early to the hospital to make sure her fluids looked fine and to a picc line placed. She was taken Thursday morning but before transport came I sat her on my lap and just prayed over her kissed her and let her hold my face. Not to be depressing or a pessimist but those could have been the last moments where I got to hold her and hug her and have her love me back. A very good friend and fellow heart mom told me to hold onto and cherish the present moments with them and don't spend every second thinking about all the possible outcomes because you'll miss out on what’s in front of you as hard as that may be. The picc placement was not successful. She remained intubated and came back sedated. I can't hold her until sometime after her surgery. I don't know when but it was already too long of a wait.

June 1st was here and transport came at 7am. Surgery was supposed to start at 9 and be finished sometime mid afternoon. Ryan and I spent an hour in the early morning praying, crying, taking pictures, and kissing her sweet face. It hurt that she was sedated and intubated so we were pretty limited to what we could do with her. After transport came we camped out in a waiting room. We got an update here and there, she was doing fine, prep work done, on bypass, Dr. Carl came out and talked to us about her pulmonary valve that was not looking good, it would need to be repaired or replaced and they would determine soon.

It's been 4:30 pm and Dr. Carl said they would have to replace the valve and take her off bypass while the cadaver valve thawed. 6:00 pm Dr. Carl said heart was liking the new valve much better and she was off bypass. They would finish up and come update in and hour. Dr Carl came in about 30 minutes later with a worried look on his face. He is not one for hiding his emotions real well.

"Rowan did not tolerate coming back off bypass, she is in very critical condition and will be put on an EMCO machine (machine that circulates and oxygenates blood) so her heart can rest, she wont survive unless she’s on it. There is also a lot of bleeding they are trying to control. We will update u as soon as possible."

10:30 they are still trying to stop her bleeding and having a very difficult time keeping her stable.

I was hearing what no parent wants to hear. Your child is on life support and has a 50/50 chance of pulling through. You see the looks on the doctors faces, and you get really good at reading people. I was angry. I looked out the big windows thinking I was losing my life. She is my life, my sweat blood and tears have been poured into this child and she was slipping away. I sat on the floor crying for a long time, my family showed up my husband was by my side. But I have never felt so alone before. No one could give me what I wanted. My child in my arms.

I waited until after 1 am (15 hours of surgery) to hear that the bleeding was under control and my baby was alive. PRAISE GOD. Her fight was FAR FROM OVER. Still so many hurdles to cross, a day can go from bad to good to bad so quickly. Blink and that's all it takes. I am celebrating in her baby steps and small accomplishments. That's all we have. We have to find some happiness in a room full of equipment and machines, pumps, drugs, tubes, cords, monitors a sweet innocent child who lies in a bed with barely a pulse, barely a heartbeat, barely recognizable. But healing. Rowan that's all mommy wants you to do is rest and heal. We have tried to wean a few times off the ECMO before, unsuccessful but we are making two steps forward with every step back. We have managed to get one cannula out of her SVC. Drs have said they are pleased with the direction she's going but we can't keep her on EMCO much longer. Either she goes into surgery to have tricuspid valve repaired that started leaking again after this last surgery and comes off EMCO 24-48 hours post surgery. Or her tricuspid valve function may improve after some fluids come off and we will de-cannulate her possibly Monday. We need sweet Rowan to do this on her own. She is so strong and has come so far and has so many more stories to tell. We have had so many people reach out to us during this journey; Rowan's story has caught like wind to a wildfire and is spreading. Our support is from family, friends, online December 2011 birth clubs who have been banded together since we first found out we were expecting. Our support is also from strangers all over the world reaching out to us, offering comfort and letters of encouragement. Decorated hearts started showing up in the mail from friends all over the globe. I'm hoping that whoever is reading this can see there is light in the darkest times. We need to trust that God will see us through. Prayer does work. Sometimes it's not an easy answer or what we feel is right or fair. But in the end God doesn't work with statistics and probabilities. He works with the impossible and making it possible. His plan is greater than we can ever understand and the hardest struggle is accepting a plan different than our own. I will never give up on my daughter. She has made a huge impact with 1/2 of a heart and two little feet.



Newborn Rowan, December 2011



Home & feeling so-so

I'm off on a short medical, hopefully back to work on Monday.  I spent Wednesday night in the hospital after going to the emergency room with abdominal pain, nausea & vomiting (aka abd pain/n/v for those nurses out there!) After 24 hours in the hospital, all tests were negative and  I was discharged.  That's good news; nothing identified and bad news;  nothing solved.  I'm not feeling great at the moment.  I am on a  liquid diet for 24 hours and then advancing my diet slowly over three days.  If I can't tolerate it without abd pain/n/v, it's back for endoscopy.  My pain level is much much lower but then again, I've rested my gut and had pain meds.  Right now I'm uncomfortable so I wonder how I'll tolerate advancing my diet?  With prayer is my only answer!
Strangely, I know of two other women dealing with similar symptoms, one in Alabama and one in Texas.  My doctors in the hospital said their best guess at the moment was "some kind of gastritis, gastroenteritis, food borne perhaps?"  Having not eaten anything the rest of my family didn't eat, that seems least likely but who knows?  Something women are more susceptible to?  Some strain of flu just now rearing its head?  My friend in Alabama had a recurrence two weeks after her initial round and the young lady in Texas has been sick for weeks and continues to have nausea and vomiting even after having her gallbladder removed.  By the way, the symptoms are very gallbladder like.  Even after a negative ultrasound the docs were so certain they did a HIDA scan, with surprising results...perfect gallbladder function. 
So I'm home drinking my meals and trusting God that the pain will not only not increase, it will disappear.  With such similar experiences and paucity of answers amongst others, I am even more reluctant to head back in for more tests.  IV morphine was the only real relief I got and somehow I don't think that's a realistic solution in the long-term! 
Well, enough of that!  That's the update in my world.  As is usually the next best step, I'm going to stick to "clean" food, clear liquids and just plain old fashioned common sense healthy choices and the best remedy of all, give it to the Lord.
So raise your glass of clear liquid & have a great Friday!

Stop & pray

It is with a heavy heart and a river of tears that I ask you to stop now, in this moment, and pray for Baby Rowan.  On Saturday we were given a window of 3-5 days to wean her from Ecmo (life support) and for specific goals to be accomplished in her recovery.  Today is day 5 and last night, Ro went back into surgery for an attempt at removing some of the life support.  Here is the update from her exhausted mama, Katie...



"things did not go as well as hoped in surgery. She did not tolerate being off ecmo and they said her tricuspid valve is starting to leak again. This is a step back and unless they start seeing steps forward again in the next few days they won't be able to do the tricuspid repair and there may be nothing left to do other than take her off and let her pass. I'm obviously in an extreme amount of depression and anxiety about this and I'm lost. My poor Ro is hooked up to 50 machines keeping her alive and we need a miracle. I want more than anything to see our prayers work but I can barely see; much less the light and the end of this dark tunnel."

Meet Fred & Ethel

My dirty little clean laundry secret?  Here it is...
I'm blessed to have a first floor laundry.  My grandfather converted cabinet space in the kitchen to accommodate a stackable washer/dryer so that as she aged, my grandma wouldn't have to climb the basement steps.  Ha!  She never stopped going into the basement, but I digress.
I love my first floor laundry.  Last week my grandparents' washer/dryer set finally croaked.  They were named Lucy & Ricky.  On Friday, Fred & Ethel were installed. Older homes weren't built for such luxury so it's not a laundry room, it's just the appliances right there in my kitchen.  If I gave it enough thought, I'd probably find it unsightly.  But I don't give it that much thought.


Fred & Ethel



So my dirty little secret? I don't immediately put my clean laundry away.  I hear you gasping.  I usually start the laundry on Thursday evening with the goal of completion by Saturday morning.  The dining table is right next to the laundry area since the laundry area is in the kitchen.  As I remove the clean clothes, I immediately fold them and stack them, sorted by their destination (linen closet, Mac's room, our room, etc.)  The dirtiest part of my dirty secret is that I don't necessarily put everything away immediately.  I holler at Mac and the Mr. to grab their stuff as they walk by and sometimes they do.  Sometimes they also just dig through to find the item they want at the moment.  That really grinds my gourd.

On Saturday morning when I'm done, I take everything from the table and finally put it away.  I also keep a largish basket on the table.  That's where the stuff that I collect from the nether regions goes as I'm cleaning house.  When it's time to take the laundry items to their proper place, the tray goes a long and the various stuffs are put away too.  The baskety tray is large enough to carry a stack of laundry as well.  I don't usually use laundry baskets because somehow they end up becoming permanent receptacles for some people and the items never transition into closets or drawers.

That really grinds my gourd too.

So the clean and folded laundry on the table removes the temptation for living out of laundry baskets. 

Of course, I know what you're thinking.  Why?  Why oh why do you do laundry this way?  Please tell us! So I will.

My least favorite aspect of laundry is putting the stuff away.  I don't know why, I don't care why.  I just know that I don't like it.  This method allows me to do the dreaded put-away once instead of five or six times a week and despite their occasional rule breaking, the Mr. and Mac are pretty good about grabbing their own stack and stowing it into drawers and closets. Plus there's the satisfaction of, when it's time to clear that table, knowing that this final step means the laundry is done for a week.

When I consider the chores I least like, I can usually break the steps down and find the one or two that are the real annoyances.  If I can think of a way to modify those few aspects of the job, I don't procrasinate as much when it's time to get to work.  

So what's your dirty little secret?  What do you do to make those least favorite tasks a little less frustrating?

God on the wind



The view from my hammock.

 Good morning, the Mitten is raised in worship to the Lord, who is right now knitting our Rowan's heart together!  Our last update from her mama Katie was full of good news...wiggling toes and fluttering eyelids; improving cardiac function and perfect labs.  I feel like I've spent the weekend in a sanctuary of prayer and in my intercession for Ro, I am renewed by association.  Isn't God good?  Last night I was laying on a hammock in the back yard staring up at the trees above me which were blowing in a mighty strong wind.  Ro's name was on my heart and I was continuing as I had been all weekend to pray continuously when the Holy Spirit brought this scripture to mind...

As soon as you hear the sound of marching in the tops of the balsam trees, move quickly, because that will mean the LORD has gone out in front of you to strike the Philistine army.  2 Samuel 5:24

This refers to the army of God, led by David, waiting for the wind to blow through the trees as the sign that God has marched out into battle; leading them to victory.   After 40+ years of knowing the Lord, I was still in awe of God blowing the breath of life across miles and literally into the body of this sweet baby.  You'll never convince me that this was just a windy evening.  It was the Holy Spirit, it was the rush of angel wings, it was the earth spinning to turn Ro toward the face of God. 

My gramma taught me this verse, it's as familiar to me as the bedtime stories other children remember from childhood.  When the wind would blow across The Farm's meadows she would tell me about King David and the wind rushing through the branches of the trees.  We would lay under the giant tree just outside kitchen door and watch the sun sparkling through the wiggling leaves, the sky blue behind it.   My child's heart would forever feel God marching across the tops of trees blowing in the wind.   In case you didn't know, I was born with a heart defect as well...a hole between the chambers.  The Lord knit my heart together with his own hand,  a miracle.  Once God has marched through the trees over head and closed your heart with his fingerprint,  you tend to live with the assumption of miracles.

Lay with your broken heart under the trees and wait for the sound of the wind...

Praying

For many months, a group of heart sisters called The Scarf Sisters have been praying for Rowan.  Ro is the granddaughter of our sister Cathie.  Ro was born with hypoplastic left heart syndrome.  She had surgery within days of birth and then on Friday June 1, the second of three major surgeries. 
We prayed through Friday and then spent much of Saturday connected via Facebook, hungry for updates.  Between the lot of us (and there are a lot of us!) I think Rowan was covered in prayer around the clock.  I know every time I awoke during the night it was with her name on my lips.  I gave up on contact lenses, too much crying...both in desperation and in praise.
What a privilege it is to pray.  Do we even realize the significance?  To speak to the Creator and tell him what we need.  To be invited into the darkest moments of others and be asked to pray, to be counted somehow worthy to do battle with confidence that our war cry is heard by God.  Astounding.
I doubt I will ever fully comprehend the miracle of mortal words received at the throne of grace.  As the Holy Spirit swept across the country and the world with the petitions of Christians closing the gap between life and death,  it felt to me like a wave of perfect power washing through and crashing around me.  For those hours of complete surrender and unity, the air tasted sweeter.  Just a glimpse of Eden perhaps.  More likely a glimpse of heaven.

Sunday evening update from Ro's mama Katie: "I've been talking to the nurse who has been trained on the ecmo. The nearest ecmo center is west side of the state. Praise GOD for this program that has been available here for only two years. If it weren't for ecmo Ro would not have made it. It gives me chills to think if she had been had surgery elsewhere or not close to any ecmo providers. Also Thank you James who is the p...erfusionist who is so smart (30 years experience) and so nice! He's been buying me coffee the last two days :) very personable and VERY SMART! He has been here since Friday and won't go home til probably tues. Oh yeah.... RO OPENED HER EYES!! They gave her some versed cuz she was actually moving too much haha."

Praising!

He heals the broken hearted and binds up their wounds.   Psalm 147:3
Behold, I AM the LORD, the GOD of all flesh.  Is there anything too difficult for me?  Jeremiah 32:27

After a difficult 24 hours, Ro is showing signs of improvement.  Currently still in critical condition, her urine output is good, her labs are "perfect" and there is no indication of brain bleed following such a difficult surgery and rounds of blood loss.  She received enough blood during those hours to completely transfuse an adult man.   Her family is exhausted yet encouraged and renewed for a new day of battle for their baby.  Rowan remains on an ECMO (bypass machine.)  Specific prayer is requested for her cardiac function, for the successful function of the ECMO (which is currently keeping her alive) and for her medical team.  Ro's pupils are reactive to light and she is not yet awakening although she has not been chemically sedated since yesterday. 
Please continue to stand with us in prayer for Ro's specific needs and for strength and quickly renewed strength during the short moments of rest her family is trying to take.  Finally, yesterday Ro's Army agreed to flood heaven and earth with praise by playing praise music in their homes, cars, yards...sing it out with your voice!  God has heard our prayers, he knows our needs.  We want to wash the atmosphere with praise and envelope this baby with worship.  God inhabits the praise of His people and the devil flees in the face of our song!

Sing with us!  He is an AWESOME GOD!

Rowan

This is Rowan.  She is the granddaughter of my dear friend Cathie and she was born with a serious heart defect.  Yesterday she went into surgery for the second of three surgeries she will need to save her life and was in surgery for nearly 24 hours.  She is now in critical condition and the doctors have been struggling all night to stop her bleeding.  At one point, her sweet mama, Katie, was told she had a 50/50 chance for survival over night. 
We've been praying for Rowan since before she was born, and we know that God is mighty to save and is well able to give her a brand new heart. 
Please join us in prayer for Ro, her family and all of her medical team.