Tulips and Rembrandts

Beautiful Blue Eyes

2012-01-24T13:52:00.000-08:00

We're not sure what it means, but we'll take it! We love our little girl having awake time!

St. Louis Weather Schizophrenia

2012-01-22T19:36:00.000-08:00

In the past week or so, we've had quite the weather here. Snowing one day...

...65 degrees the next. I'm just thrilled to be experiencing it all from home and not watching the changing temperature from the hospital window. We've been trying to make the most of opportunities to go outside, snow or shine. Now that Ava's home, it's a bit easier. The girls were thrilled to get to go to the park together...I believe it was Ava's first trip! Unfortunately I didn't get a picture of Ava before she threw up all over sweet Miss M and herself.

These days, we're not taking any family time together at home for granted.

No admission!

2012-01-20T16:03:00.001-08:00

She was home by midnight and had a good day today. We're hoping this bodes well for a weekend at home. Thanks for your prayers!

Working "The Plan"

2012-01-19T19:39:00.000-08:00

When we left the hospital last week, we had a plan in place that would hopefully keep Ava at home as much as possible even if her seizures continued. After increasing seizure activity over the last few days, we had a conversation with our Dr. and got the go ahead to do "the plan*". We gave Ava rescue meds this afternoon and though she responded well at first, her seizures returned, so tonight we had to bring her to ER for more substantial intervention. So far, she's obeying her daddy and following the bullet points exactly. The big girls are tucked in at home and we're praying Ava Bean escapes without an admission.

*The (official, but constantly changing and could at any moment be completely tossed out) Plan
*when we see a ramp up in seizure activity:
1. try rescue meds at home
2. drive her to the ER so she can get stronger IV meds
3. if she responds well (seizures stop, and she stays out of respiratory distress) we can go home!
We're at step 2, and step 3 is looking hopeful.

We took these pictures a few nights ago...the big girls were so excited finally get Ava in on the matching Christmas Pjs

Don't you just want to be part of that hug??

She's pure sweetness.

Maintaining

2012-01-19T08:15:00.000-08:00

We're still at home. Ava is still having small seizures, but she is adjusting to her new diet and we're continuing to tinker with her medication levels, and so far we're able to stay at home! I have a number of posts rumbling around in my heart, but no time to write yet. I'll plan to post a more thorough update by the weekend. I just wanted you to know we're hanging in there and aca's still home!

On our way!!

2012-01-13T15:15:00.001-08:00

Possibly...

2012-01-13T12:05:00.000-08:00

Home today! Still waiting on discharge paperwork, but we've got all her new prescriptions, we've received training on her Broviac (the port in her chest), her MicKey button (gtube) and making her formula at home. So since she hasn't has a seizure in 48 hours, we are hopeful that we can get a few days at home seizure free. As wonderful as discharge is, it would be really difficult to head home only to come back and get admiitted in a day or two. Right now we are in a bit of a routine, and as difficult as it is to stay, the upheval every time we come home and then leave again is real. The big girls feel it and Matt and I feel it. So we continue to pray for a total end to her seizures and the hospitalizations that accompany them.

We are so thankful she's stable, she's a little more alert and stable on the ketogenic diet, though it could still be weeks or months before we know if it's having any impact on her seizures. We don't know how long this calm will last, but we're thankful for what we have today. Thank you for all the support, all the emails, comments, texts, generous contributions to our nanny fund and meals. We simply could not have survived this admission without your ongoing and tireless practical help and prayer support. We're beyond grateful.

Our Keto-Kid

2012-01-09T20:11:00.000-08:00

On Saturday morning, Matt and I finally felt confident enough to choose the next steps in treatment for Ava. We won't know more about the abnormal masses in her brain until we get another look on MRI in a few months. So until then, what we can work to address is her epilepsy.

Here are a few facts, without getting too technical:

Most people with epilepsy (around 60%) will get control of their seizures with the introduction of one seizure medication.

Another 30% or so will improve with the addition of a 2nd medication.

The remaining 10% have what is considered "hard to control epilepsy." And no matter how many medications you throw at them, they're not likely to get seizure control. That's the group Ava's in. So the last glimmer of hope for these folks is a treatment that has re-surfaced in the the past few decades: the Ketogenic Diet. It mirrors the Atkins diet (high fat, very low carb) and forces the body to metabolize fat instead of carbohydrates for energy. This state is called "ketosis" and for centuries has proven beneficial for seizures.

On Saturday at 10am, Ava started receiving ketogenic formula under the supervision of her doctors. Her diet is carefully monitored by a dietician and measured out on a gram scale by her totally conscientious mother. (YAY! finally a use for my gram scale besides measuring ground beef to the perfect pound!) We'll also need to restrict her from lotions, baby medications and diaper creams....which also contain carbs...did you know that??

So here's what we're waiting for:

*Her body will enter ketosis (as indicated by a urine test at every diaper...we're getting close)
*Her blood sugar will drop and then bounce back (not quite yet, though it's dipping)
*Her blood will get acidic and then level out (not quite yet)
*Over the next month, we hope to see a positive change in Ava's seizure activity...though this can take up to a year.
*1/3 of folks will see no change, at which point, if that's Ava, we would stop the diet.

But from where we stand, in the very best case scenario, once her body enters ketosis and her blood dynamics level out, we can go home...yep! HOME! But first she has to stop having hour-long seizures like she did yesterday and today. Both required serious rescue meds, so we can't leave the hospital until those cool off. We see a glimmer of hope about the end of the week, but it's just that...a glimmer.

First, we've got to get Ava into ketosis...go Ava go! and the prolonged seizures (heck - ALL the seizures) have to stop!

THANK YOU for your prayers. Despite Ava's continued seizures, Matt and I feel at peace with the direction her treatment is heading.

Lamentations

2012-01-07T20:14:00.000-08:00

It was June of 2005. I stood in a sea of attendees at a conference to equip church worship leaders. The conference had been a mix of new insights and powerful encouragement, as well as painful moments of feeling isolated and alone, having only recently received the diagnosis for the baby I was still carrying. I smiled when people congratulated me on my bulging belly and wished with all my heart my feelings about the future were only filled with hope.

I stood in the last conference session on the final day when the words floated out to me and I was undone.

I was sure by now,
that you would have reached down and wiped our tears away
stepped in and saved the day
but once again, I say "Amen," and its still raining.

As the thunder rolls,
I gently hear you whisper through the rain, "I am with you."
And as your mercy falls, I raise my hands and praise the God who gives and takes away.

For the first time, I had a way to worship IN and THROUGH my pain and not in spite of my broken heart. As the music played I felt free to run to God with my sorrow over Elizabeth's diagnosis and let him meet me where I fell. Matt and I listened to that song dozens of times in the next days and months and it was a lifeline between God and me during some of the darkest moments of my life.

Lamentations

Songs which enable me to express my full range of grief, sorrow and despair in the safety of surrender to a loving and sovereign God.

They remain an integral part of my worship to this day and I am indebted to the artists who have shared their personal struggles through music and lyrics, giving us language for the days when there simply are no words.

**********

I know some of you have walked your own painful journeys. These are a few of the songs that have rescued me from despair time and time again. All are available on iTunes and many can be viewed on YouTube. If you have favorites of your own, we'd be so grateful if you would leave a comment and share.

Praise You In This Storm ~ Casting Crowns
When the Tears Fall ~ Newsboys
Lord I Run to You ~ Tommy Walker
Desert Song ~ Hillsong United
Blessed Be Your Name ~ Matt Redman
Part the Waters/I Need The Every Hour ~ Selah
Show Me Your Face ~ Brian Johnson
Gratitude ~ Nichole Nordeman
I Bless Your Name ~ Selah
Held ~ Natalie Grant
All My Praise ~ Selah
Your Hands ~ JJ Heller
You Are Sovereign Here ~ Stephen Miller

Funny Business

2012-01-06T11:38:00.000-08:00

Ava did not have a great night last night. Yesterday she dropped her heart rate for a few minutes, overnight it was her oxygen saturation and this morning she had a two hour seizure which meant she didn't get her scheduled EEG to check her brain for subclinical (not visible to the observer) seizure activity. She did get rerouted to to a CT scan however, and the preliminary results look fine.

It's difficult to see her regress after a few wonderful days. We know many of you around the world are gathering in your various homes to pray for Ava and our family tonight, so we wanted you to know the latest...the fight continues!

In other news, our sweet Miss M is back and feeling better, and after having two days of fevers, Elizabeth appears to have rebounded without a hospital visit! Quick, somebody write that down! Ruby and Hannah Mae are still fighting colds (tis the season!) which means they can't come visit Ava and so we continue the hospital home juggling act.

All of this is in His hands. We so appreciate your prayers!

Recovering Beautifully

2012-01-04T19:43:00.000-08:00

She's waking up. She's making some eye contact. She's cooing. She's showing us her dimples and seems like she wants to smile. She's resting in our arms without constant involuntary movements. She's drinking from a bottle. She's trying to follow a toy with her eyes.

Ava is waking up.

It could be the changes we've made in her medications.

Or it could be that God is healing her brain.

Nothing, you see, is impossible with God.

Plan for the Day

2012-01-04T15:24:00.000-08:00

Ava had a peaceful night in the PICU. In fact, she looked so good coming out of anesthesia that once she got settled in and we made sure her nurse was "the hovering type", Matt whisked me home so we could both get a good night of sleep.

Today, these seemed like attainable goals for all of us.

The preliminary biopsy readings are, at best...not devestating, and possibly hopeful. How's that for hedging??

Her MRI still shows lots of problems with many areas of her brain. So the biopsy was necessary, and while they were in there, they collected a small piece of the muscle in her temple, because that might give us more answers, and doing it now might help her avoid another sedation.

The first glance at the tissue samples seems to indicate the tissue they collected is not an agressive cancer tumor. However, that doesn't rule out the possibility that the tissue still in her brain could become cancerous, or that there is already cancerous tumor growing elsewhere in a different part of the tissue that we didn't collect...thus, we are not devestated, and moderately hopeful!

We have to wait for the final reading which will happen in a number of weeks to get anything concrete. Even then, what they're seeing in Ava's brain is so rare, the "results" may be simply labels, without clear treatment or prognosis information attached to them.

So yet again we wait, we rest, we continue to trust our Ava Bean into God's capable hands, and thank him for her every breath.

We decided Ava could use extra support while she recovers, so we wrapped her up in her sister blanket. Some friends (thanks Schneidimotos!) sent it to us when Hannah was born, and it had the three girls names on it. We added Ava's and now it's a perfect!

Thank you for all the prayers and support.

MRI...check! Biopsy...check!

2012-01-03T10:46:00.000-08:00

Now we're just waiting to see her in the post-operative suite!

Thank you for your prayers and all the emails, texts and comments here on the blog. I can't tell you how buoyed we are by your expressions of hope, love, faith and encouragement. We have even made contact with two other NICU family friends who are also in the hospital right now. With all the love near and far, we know we're not alone and that is such a blessing.

Ava's biopsy went well. The surgeon got all the samples he needed and she had very little bleeding and so far no other complications. They sent off the samples and we may get some preliminary information this evening. We're on pins and needles, but can't make anything go faster. She'll stay in the PICU tonight for observation, then it's back up to the Neurology floor for her to recover for a few days while we make the plan with the team. We'll likely be here through the end of the week. Beyond that, we've learned not to make plans.

Every breath is grace.

Yet another BIG day for Ava

2012-01-02T19:49:00.000-08:00

Tomorrow morning at 7:30am, Ava will be wheeled back for a "stealth" MRI, followed by a brain biopsy. She'll need to be sedated for both procedures, but they'll occur 6 floors apart so she'll be "bagged" while they wheel her between floors. Both procedures are considered minor, but the whole morning is a big deal for us. Please pray for Ava's safety during sedation, transport and the procedures. And if you have the faith to believe God can do a miracle, would you pray that her MRI would be perfect and the biopsy would be unnecessary??

During the MRI they'll be getting coordinates so they can aim perfectly for the biopsy. The biopsy will require a craniotomy, and the neurosurgeon will be removing three different pieces of abnormal brain tissue for testing. We may get preliminary information, but it's unlikely we'll get definitive answers sooner than a few weeks. Please pray for Dr. Smyth's hands and protection of Ava's surrounding brain tissue. Please pray for clear information from the biopsy and wisdom for Matt and I as we work with the doctors to decide what to do with the information once we have it.

Meanwhile, Miss M has a stomach bug, so she's gone to recover and we're reworking things for tomorrow so Matt can be here too. Please pray for wellness for our sweet helper!

One moment at a time, God provides.

We wait. We rest. We depend. We trust.

And we take big, deep breaths.

A Change

2012-01-02T12:32:00.000-08:00

After a long travel day on Saturday, I got the girls wound down and tucked in bed and drove up to see Matt and hold Ava into the New year. She took my breath away. She was so beautiful, and so painfully still and unresponsive. I wondered in my heart if by going to California I had lost the chance to ever see those blue eyes full of life again. I held her and prayed she could feel my love for her.

On Sunday I arrived while she slept on. I struggled with despair. It was one thing to pray for her from afar, but to hold her close and see the reality and horribleness of her situation filled my heart with such an ache. I cuddled her close and talked to her, willing myself to treat her like a healthy baby who could sense her mama was close. I turned on my favorite playlist of worship music and let it lift me from my discouragement.

Then she opened her eyes.

And coo'ed!

I held my breath. And she yawned.

Her tired eyes flitted around the room and she even seemed to look at me a few times. We sat like that for two hours. The shutter clicking, relief and gratitude filling my soul.

God is not finished yet! We're still in the fight!

Together at last!

2012-01-01T11:17:00.001-08:00

MRI results...an update from Matt

2011-12-30T21:09:00.001-08:00

It's been a roller coaster week and we wanted to briefly update everyone on Ava's status.

One week ago today, I took Ava to the ER because she was too sleepy to eat, presumably because her seizure medication doses were so high that they were shutting down her brain. We thought she would be admitted, get rehydrated, have her medication doses lowered and she would soon regain some wakefulness. However, as soon as her medications were scaled back, her seizures returned but although she improved in her ability to eat a little bit, she remained much sleepier than expected.

I pushed the team to repeat some of her testing, including the MRI of her brain. She had that yesterday, and much to everyones' surprise and dismay, the results are dismal. In addition to showing widespread malformation of the brain itself, several important regions appear to have been taken over by tumor (most likely a glioma). The most important region is the upper brainstem, the region responsible for controlling wakefulness, eye movements, and the ability to suck. It's now clear why she hasn't been waking up like we'd hoped. What isn't clear is what this means for Ava. To help her get nutrition while we figure things out, we had a gastrostomy tube placed today. This tube goes through the wall of her abdomen and into her stomach to allow us to put her formula directly in when she can't drink it. She had a tough time with the breathing tube and is being kept in the ICU overnight to watch her respiratory status.

Next week, she will undergo a brain biopsy to confirm the diagnosis, which will hopefully give us more information about whether treatment is even an option. If they are right about it being a glioma, there is little they can do. Fortunately, we believe in a God who can do all things!

Ava's Recovering

2011-12-30T14:46:00.001-08:00

Ava's procedures went smoothly. She's in recovery and will be transferred to the PICU as soon as they have a room for her. This morning, we were told that the surgeons would have time during the procedure to give Ava a g-tube as well. This was on the schedule for next week, but we were grateful it could be combined with this sedation and spare Ava another trip to the OR.

Though we remain in the fire, God continues to send us angels to stand with us and remind us He is very much with us right now.

He continues to say, BE STILL AND KNOW THAT I AM GOD.

And He is.

We found out yesterday that a dear woman who has been praying for Ava for some time will be travelling on the same flight to Dallas with us on Saturday! Amazing!! For 3 1/2 hours I will have an angel to help me care for my girls!! And as an added bonus, after meeting her momentarily, Elizabeth crawled right up in her lap and practically snuggled with her! What a huge relief. For those of you who've been praying for that, who knew how sick I was at the thought of flying alone again, THANK YOU. God has answered our prayers.

So we continue to hold up our sweet angel and thank you for every prayer you offer up on our behalf.

Tests, procedures and tomorrow.

2011-12-29T23:53:00.001-08:00

Yesterday, Ava was hooked up for another round of video EEG monitoring and it was confirmed that she is still having many "sub-clinical" (not visible to the watchful eye) seizures. So today, Ava was sedated to undergo an MRI to provide us with some answers about her epilepsy and guide our treatment decisions. She came through the procedure smoothly and the findings will be discussed tomorrow (Friday) morning at 8am during a meeting with all of Ava's neurologists and her neurosurgeon. The initial information we have is not good. But we will wait to communicate more until we have a grasp of the whole picture...at least the only picture the medical team can give us.

One thing was certainly confirmed during the process of sedating her for her MRI: Ava has run out of IV sites, and needs a Broviac catheter. This is a central line inserted into a large vein leading to her heart. It will be a permanent port in her chest which will give us constant access to blood for labs, and a stable place to deliver medications.

So tomorrow Ava will have another procedure to insert the port. She's an add-on case so we don't know what time she'll be taken back. Matt will keep vigil as he has day and night since last Friday. Meanwhile, the girls and I will spend our last day in California and prepare to fly back to St. Louis on Saturday.

Please pray for our little one. For wellness for each of our girls. For rest for all our children and their weary parents. For a smooth procedure. For wisdom and insight for Ava's doctors. For our hearts to be prepared for what is ahead.

Ava's Seizures

2011-12-26T07:33:00.001-08:00

Ava's still in the hospital where she's continuing to drift between seizing almost continuously, and being too sedated to eat or take her medications by mouth. No one has any new ideas, and Matt and I are discouraged and frustrated with the lack or an apparent path. She is completely incapacitated. She can't develop, respond to us, engage with us or even get comfortable for any length of time.

She's getting rescue meds (fast acting drugs to stop her seizures because they won't stop on their own) multiple times a day. Her head IV is still working, but usually after 3-4 days in the hospital, her IVs quit working because they clot off. So it's likely they'll need a new site soon, and so far, she's been a difficult one to stick. There's been talk about putting in a port, which would be a little reservoir under her skin that would give them constant access to the blood they need to check her med levels, but that doesn't solve the IV problem.

It is terribly stressful to watch our sweet girl suffer and not be able to do anything about it. Ultimately, Ava continues to need a miracle.

The big girls and I are still in California, and we're being loved on and distracted by our amazingly wonderful family. I'll post a few pictures to the blog as I'm able, but wanted to get this out urgently.

Thank you for your prayers.

We hope you had a truly joyful Christmas.

Merry Christmas from California

2011-12-25T13:51:00.001-08:00

Ava's in the ER

2011-12-23T13:44:00.001-08:00

Matt took her in after she had another prolonged seizure this morning. She resting with Daddy now, after getting an IV in the only location they could find a good vein...her head. Matt is with her of course, and I know he's bracing itself for the possibility of an admission over Christmas...if you're local and available, I'm sure he'd appreciate a text, call, or a visitor with caffeine in hand. I'll keep you posted.

A Change of Plans

2011-12-22T21:22:00.001-08:00

After our busy weekend in and out of the hospital, and some long discussions, Matt and I decided I would head to California with the three big girls and he would remain in St. Louis with Ava for Christmas! Ava has continued to have clusters of small seizures throughout the week, as if to confirm our decision to keep her home. In an effort to stop them, we've increased her medications, and are now struggling to get her to drink her bottle because she's completely sedated, and unable to wake up to eat. My brain is ready to sleep thrugh a few meals myself, so I'll head to bed and post more tomorrow. Of course, we'd appreciate your continued prayers. Though unconventional, we're thankful that we both have peace about spending this Christmas apart.

Together again

2011-12-19T19:19:00.001-08:00

Ava's home and once again, we have all our girls under one roof. Her
seizures are stable and we're hoping the medication increases will
keep her in a quiet zone. We're also praying she doesn't catch the
cold that the rest of the girls have, since illness can be a trigger
for more seizures. Thank you for your prayers and support! Goodnight.

Hope

2011-12-18T20:18:00.001-08:00

For years now I've asked God to show me what hope looks like. To please, oh please give me something to do that feels like hope when my life is being buffeted by sorrow and hard and disappointment and the future looks like more of the same.

Last week, while Ava was in the hospital, (ironically, the evening after i posted about God's recent provision) I listened to a sermon on the power of thankfulness by Bill Johnson and God used his words to give me handles for what hope is right now.

Speaking about the account of Jesus thanking the Father before feeding the 5000 in John 6, Pastor Johnson said,

"Sometimes, when the need is so great, and God's provision is incremental, thankfulness is actually an act of faith."

Tonight, I am thankful for my family, separated as we are. Four amazing little girls, one incredible husband. Miss M is with our sleeping ones, and i'm here with Ava while Matt catches up at work for a few hours. Ava's seizures are, for now, quiet, and she's sleeping peacefully. We are not where we want to be, but God is taking care of us here. My hope is thankfulness as an act of faith.

Ava will stay overnight in the hospital to ensure her med levels remain as high as they need to be in order to keep her from seizing. Our plans for a California Christmas seem all but impossible. But in eight days, regardless of where we are, our little family will celebrate the reality that the One who created us, came to live with us. Christmas is coming and because He came, we still have hope!

Ava Bean

2011-12-18T15:01:00.001-08:00

Ava left the house in an ambulance this afternoon. Her clusters over the last week have responded to the recue medications we've given her at home, but today her seizure persisted despite two different medications and we had to call an ambulance. This is disappointing, especially since she's been acting perkier these past few days. We've seen her eyes more than we have in the past two months! The girls are happy at home with Ms. Marcia and Miss M comes back tonight. Thanks for your prayers. We'll keep you posted.

2011-12-16T20:21:00.001-08:00

We're still at home, but Ava continues to have seizures and her seizures continue to change a bit, so we're still scrambling to find the right medication cocktail. We are hanging on to our dream of going to my (Sara's) family gathering in California for Christmas, but are aware that it will take a miracle. Oh, how we would love a miracle right now.

Out the door!

2011-12-07T20:31:00.000-08:00

And we'll sleep in our own beds tonight!

EEG results

2011-12-07T09:03:00.001-08:00

Ava's video EEG was very helpful.

*It confirms that much of what Matt and I are calling seizures or seizure activity are, in fact, seizures.
*It also revealed that our sweet Ava Bean is having many more seizures that are going undetected.
*This allows us to make more informed choices about medication and possible future dietary changes.

After a 2 1/2 hour meeting with Ava's epileptologist, we have a bit of a road map for how we'll try to get ahead of and control her seizures, and we also have a better idea of the developing picture of Ava's brain development. Today we'll talk with Genetics and she'll get a lumbar puncture as well as some other blood tests. We'd thought we might go home tonight, but she had a pretty busy night and morning as far as seizures go, so that may or may not get to happen.

Of course no one knows for sure what the future holds. And honestly, there's mercy in not having the whole picture revealed to us now. However, we do know that right now, Ava's brain needs to "cool off" so she can develop. At this point, she pretty much like a newborn developmentally, so she deserves some seizure-free time to see what her brain can do when it's left alone for a while. We so appreciate your prayers that this would happen sooner than later.

--
www.msharms.blogspot.com

Does this hat make my cheeks look big??

2011-12-05T14:37:00.001-08:00

Um, could she be any cuter? Maybe only if she'd give us a peek at those beautiful blue eyes...but alas, too much phenobarbital makes it hard to pose for the camera!

Ava's doing exactly what we'd hoped. She's had a number of episodes we were hoping to capture on video EEG, so we're optimistic that we'll get a bit more clarity for moving forward. It is weird to feel thankful that she's having seizures, but that's where we find ourselves....it gives a new perspective to, "rejoice always!"

Big day ahead for Ava

2011-12-05T06:31:00.001-08:00

I just love this picture of Matt reading bedtime stories with the girls a few weeks ago. What an amazing daddy he is. It is such a comfort to know God gave our daughters the perfect father to watch over their bodies, care for their hearts, develop their minds, and to reflect God's love for them on every single day.

Today is a big day for Ava. After a week of sometimes clear and often not-so-clear seizure activity, Ava will be hooked up to an EEG video monitor for the next 24 hours to allow us to capture information about what her brain is doing when she looks like she's having a seizure. We need as much precise information as possible as we make decisions about new medications and weigh their side effects and her need to be awake and develping. At this point, our precious angel is spending too much time in seizure-land.

Miss M is back, so the girls at home are well cared for. We so appreciate your prayers.

--
www.msharms.blogspot.com

Provision

2011-12-04T10:04:00.001-08:00

This past year has been such a long road with near constant struggle and we've ached for someone to just rescue us. To come and take all the hurt and hard parts away. And while God has taken care of us, through the help of many, we've often felt isolated. It's as if we are floating in the middle of the ocean and God is throwing us life preservers, but we aren't any closer to land. Disappointment lurks everywhere we turn. Probably like the israelites...wandering in the dessert, yet not entirely comforted by miracle shoe leather and breakfast on their doorstep, because they are, after all, still killing scorpions and looking for shade.

I'm so like them.

I don't want to have to trust. Every. Single. Day.

In the past we've had friends who've been our go-to people in a crisis...always jumping in, always ready to "activate the meal train". And there has been tremendous comfort in that. I appreciate having a bunch of faces to look at, friends who understand our life, anticipate ways to help and can be as available as their hearts desire. But one at a time so many of our dear friends have become long-distance companions. Others have gone through major life, job or health changes and we find ourselves without a cohesive sense of community, in the very period when we are the least capable of pursuing the very relationships we need.

And God whispers, "I AM. I will be your source. I will provide."

And He does. Like manna. Every day.

A new face at church. We both need "family" in town. A new friendship.

A young woman who needs the perfect job. Who knew in our mess we'd be perfect for anyone?? We are. And she is perfect for us.

A neighbor who rakes our leaves. And friends of friends take their Saturday to work on our yard and house projects.

Friends pick up birthday presents, bake a cake, research thanksgiving meals to-go, hold Ava, bring meals, send gift cards, money, emails and texts filled with encouraging scripture, and every day pray for and encourage us.

On one day alone, a colleague surprises us with a thanksgiving feast and teachers from Elizabeth's school give us a gift card, a beautiful bouquet, gorgeous specialty pumpkins for our porch and and notes for Elizabeth who's missed almost two weeks of school. Thanksgiving. Delivered.

Every day. "What is it?" We ask. Manna. This new kind of community. The only "problem?" None of these people know one another. They are "randomly inspired," wonderfully, generous souls who aren't on a checklist or a calendar. We can't arrange for it, organize it, or even anticipate it really, more than to simply know, somehow, God will provide. So our choice is to wait every day for God's provision, trust it will come, and if it doesn't look like it did yesterday, or doesn't look like what we need today, trust that it will be enough.

And when our "help" is sick or unavailable, or our much anticipated (desperately longed for!) visit from grandparents is delayed by a day (due to weather?!?) our task is to press into trust. To lay down our feelings of disappointment and entitlement because, "our life is hard enough already!" and trust that today's manna will fill our bellies and for this and much, much more, we have reason to be thankful.

For breakfast delivered by a colleague

A timely email from a friend to shake me from my trap of self-pity and remind me of the Truth. His mercies are all around me.

An excellent overnight nurse who responded quickly to Ava's new round of seizures.

A private room at the hospital & three healthy girls at home

Praying parents, and family and friends who remember us, inspire, comfort and encourage us.

A new Christmas album...cheery songs reminding me of the Hope we have.

You. Your prayers. Your friendship. Our manna.

Not there yet...

2011-12-03T17:47:00.001-08:00

Ava's continuing to have breakthrough seizures, so we're obviously not able to go home yet. She's had a good day otherwise, but we need to get ahead of these seizures. Our doctor is not eager to begin a third medication yet. Ultimately, Ava's moving further into the "hard to control epilepsy" category, and the more meds we add, the less likely they are to work. Thank you for your prayers.

Pretty in Pink!

2011-12-03T12:54:00.001-08:00

Not to be lost in all the craziness with Ava is the news that Elizabeth has a sparkly new set of PINK hearing aides! She loves them...to look at, to hold, in the case, and on Ruby. On herself? Not so much.

She has moderate conductive hearing loss in both ears, which means she just needs everything turned up a bit. Praise God it's a problem we can address! Unfortunately the first time the audiologist turned them on, the volume was so dramatically different that she was completely traumatized! She wouldn't even touch them for days and definitely wouldn't let us turn them on. Lesson learned. So we dialed the sound way down and she's willing to wear them for short periods of time now. If she's eating ice cream. And if Ruby's wearing the fake pair given to us by the audiologist.

So we're making baby steps and are so proud of our brave, flexible daughter. She constantly amazes us with her willingness to adapt to all the "stuff" that's handed to her.

iPad Love

2011-12-03T12:05:00.001-08:00

Prayers for Ava...and the rest of us!

2011-12-02T20:18:00.001-08:00

We're still here, we're still alive, but we still need your prayers!

Ava's back in the hospital tonight after having an increasing number of "breakthrough seizures" this week. She must like the Friday night menu at Children's Hospital, because this seems to be her favorite night for admissions! Perhaps she knows it's a one way ticket to a night with Daddy.

Following our discharge last week, she's been seizure free, but pretty sedated. A few days ago, she started to perk up, and that's when the small seizures began. Last night she had a number of weird "seizure-like" episodes, and because we weren't convinced they were the real thing, Matt and I took turns sitting up with her all night watching and praying. Today it became clear that we needed IV doses of her medications to properly control these episodes, which are most likely seizures. So here we go again!

Praise God~
*Ava has a brilliant neurologist Daddy. Between my mama's intuition and his medical acumen, we're a great team in caring for our complex little angels.
*after THREE rounds of antibiotics, Elizabeth, Hannah Mae and I (Sara) are all mostly well from our ear infections and colds. Matt and Ruby are also finally well, having avoided the antibiotic route, and Ava never caught our germs!
*My parents' visit and Miss M's hard work this week allowed us to catch up on a bunch of things around the house and we head into the weekend with a shorter to-do-list hanging over our heads!

Please pray for~
*Wisdom for Ava's Dr.s...to better understand and treat her seizure activity
*Sleep and wellness for ALL of the Harms tonight. We're sick and tired of being sick and tired, and after the month we've had could sure use a break from illness. Having healthy girls also gives us much more flexibility to bring them to the hospital when we need to.
*Strength and stamina for Matt and I. My parents visit provided us with a lot of encouragement and a "shot in the arm" so to speak. Now we've got a race to run and we need the endurance to do it.
*Matt's Dad, who is also in the hospital tonight. His cancer treatments have left him very vulnerable to infection so he's getting antibiotics while we wait to see what exactly is causing his symptoms. They are far away in California, and obviously Matt carries his dad's health concerns with him always.

Much love, and gratitude for sticking with us through yet another twist in the road!

home

2011-11-22T20:26:00.001-08:00

We're here. Ava's settled in nicely. She's pretty sedated from her meds, which makes easier to keep her sequestered from the germs all over our house right now. We're not comfortable with it for the long term. As nice as it is that she no longer cries all the time when not being held, she needs to wake up and observe and interact with the world around her in order to develop! We're hoping things will level out and she'll adjust to her new med levels and perk up soon, otherwise we might need to make some phone calls.

The rest of the crew is in various stages of illness. So we soldier on with the help of THREE additional people at various times throughout the week and thank God for all the little and big ways He's caring for us right now. More on that in the next post.

Discharge Take Two

2011-11-21T17:35:00.001-08:00

If all goes well, we'll be discharged in the next few hours, and get to head home, hoping to stay there at least through Thanksgiving. Ava's pretty drugged from her last boost in her meds, but we hope that will settle out over the next few days, and at the very least buy us some time at home over Thanksgiving, my parent's visit and Ruby's birthday.

It's a bad sign when the hospitalized child is the easier of the four...Matt had the home assignment this weekend and spent the entire weekend covered in or cleaning up bodily fluids, holding coughing or feverish girls in the middle of the night and generally being Super Dad. Let's just say, he was eager to return to work this morning and compartmentalize a bit today!

Along those lines, if you're praying for our family, would you add to that list, Miss M, my parents and anyone else who is planning to help us in any way?! It's all well and good to have a support system in place, but it seems like anyone who enters our orbit these days gets sick too! And selfishly, we need healthy helpers!

So we head into the eye of the storm at home praying Ava, Miss M, Matt and I are protected from whatever virus is running through our little princesses, praying to stay home and seizure free for a while, and praying for the space to be thankful, to celebrate out sweet Ruby and have joy in our castle each day.

Holding steady

2011-11-19T12:43:00.001-08:00

Ava's been seizure free since yesterday afternoon. We'll likely be here through the weekend. Elizabeth is also maintaining at home. Now Ruby also has a low grade fever, so we know there's a virus mixed up in there somewhere, we just pray it doesn't turn wonkey in Elizabeth. We can't prevent anything at this point, so we just watch and wait.

We're bummed to miss another week of church...Elizabeth's dying to go and wear an outfit she got for her birthday. Hopefully next week everyone will be well.

In fun news, our dear Ruby turns 4 on Friday, and my parents are flying in for a few days! We know better than to make any plans...(ours seem to be derailed on a daily basis!) but we're soooo excited for the visit, even if it means we just have extra company in the hospital and extra hugs for the girls. We might even think about celebrating thanksgiving...we'll just wait and see.

So close

2011-11-18T15:11:00.001-08:00

We could almost taste it! This afternoon as we were gathering our things to leave the hospital, Ava had a small seizure. It gave us pause, but we agreed that we would bump up a med and take her home....then 45 minutes later, in the elevator on the way out to the car, she had another seizure. So we pushed the up button and the plan changed. She's had two more, so it's officially a "cluster" and we're back in the hospital for a few more days.

In the mean time, Elizabeth is spiking another fever....we're hoping it's just a virus, but we'd prefer she get well so we don't feel the looming of another hospitalization for her.

One step at a time.

2011-11-17T05:59:00.000-08:00

Yesterday was a good day for Ava.

Ava had a small seizure in the morning, so they went up on one med, and will wait to see if we can avoid a big one...this is precisely why we're here.

She had a repeat hearing test, which she passed with flying colors! Her hearing is basically normal! What a relief.

Some of her morning blood work came back elevated, so they had to re-stick her twice last night. We finally BOTH got some rest when I let the nurses play with her around 2am...and they kept her until 7!

Nothing big on the schedule today, just trying to remain seizure free!

Elizabeth continues to recover from her bug and in the mean time is trying to make friends with her new hearing aides. She's willing to carry them around, and will wear them turned off while she's eating ice cream. So we're making baby steps of progress!

Spa Day...kind of

2011-11-16T05:46:00.001-08:00

Around here, we take pampering however we can get it. Last week, during our hiatus from the hospital, Ruby "saloned" me which means she, "the Saloner", brushed out my hair and put in every clip she could find. Very relaxing, let me tell you.

Today, Ava and I will go sit in a recliner for a few hours and try to sleep while they stick things in her ears to test her hearing again. She had a busy night (read: didn't sleep so much) so she should be good and tired when I feed her in the little sound booth. This was a prescheduled test, to be done as an outpatient, but we were able to avoid canceling it! She's still seizure free, so we'll watch for a few more days as her med levels settle out, to see if we're still in "the zone" before going home.

Thanks for your continued prayers! The girls are doing well at home with Miss M and a few friendly visits from familiar faces. And one day at a time, we're making it!

Thankful for friends

2011-11-15T15:18:00.001-08:00

Friends who bring coffee, even when their baby is in the hospital too!

Friends who love on our girls, take them to the park, sit with them in the hospital, send or bring them treats and help them have calm hearts even when our world is upside down.

Friends to hold Ava when our arms are tired...day or night.

Friends who make meals, organize our meal calendar, send starbucks cards or grocery money, who try to share our load every day.

Friends who are friendly faces among Ava's and Elizabeth's doctors. Our guardian angels here who pop in in the middle of their day to check on us, and who work to make our stay as painless as possible.

Friends who call, email, text, comment, post and generally make sure we know we're loved, thought of and supported.

Friends who show up to pray, cry, listen, make us laugh (and bring coffee!) and hang on for the ride, even when the ride is bumpy for a long, long, time.

Yaaaaaay!

2011-11-14T14:38:00.000-08:00

We're outta here! One down one to go!

Family Vacation....of sorts

2011-11-14T13:05:00.001-08:00

This morning both girls got the call to go down for ultrasound at 8am, so we rubbed the cobwebs from our eyes and took a family vacation down to radiology! They looked at Elizabeth's kidney and Ava's ventricles. Both got good reports! So far E's cultures are still negative, so since her kidneys look good, she gets to go home today! Ava will stay probably through the end of the week so we can make sure we're not going to bounce back again. One day at a time...

Double Trouble

2011-11-13T16:11:00.001-08:00

Would you believe me if I told you two of our angels were camping out together in the hospital tonight?? It's still surreal. This morning, Ava started seizing as we were getting ready for church. After 10 minutes, the ambulance took her and Matt to the ER. When Elizabeth woke up, she was obviously not well, and a call to her Dr. won us a trip to the ER to rule out a kidney infection.

Praise God:
*Since Ava's last admission we've gotten a letter from her Neurologist to expedite things in the ER.
*Ms. Marcia came over and cared for Hannah Mae and Ruby so the rest of us could be in the hospital.
*Miss M comes back tonight and will stay with us all week, so that significantly reduces out childcare stress...at least for the ones at home.
*a friend is here tonight while Matt runs home for supplies.
*We have a shared room! Big Sis and Little Sis each have their own nurse, but will get to sleep a few feet from each other.

Matt's home now, taking the "middles" out for an ice cream treat. They could both use some Daddy Time. We'll just take it one moment, one breath at a time. I cannot wrap my mind around our reality. It just seems impossible! Yet we know God specializes in the impossible. So here we go...

Heading home

2011-11-10T15:09:00.001-08:00

Long day, heading home.

New digs!

2011-11-09T21:05:00.001-08:00

Ava had a busy morning! She slept through much of it, but managed to get a head ultrasound, an X-ray, and an EEG, all of which left her too tired to do much entertaining when the GI stopped by to talk about her vomiting, and Speech Therapist stopped on to troubleshoot her feeding issues. She did give me a talking to after I had the audacity to wash the goo from her head and give her a much needed sponge bath. What nerve! Then this evening, we found out one of Ava's NICU buddies was also here in the hospital. We got a visit from her mom, and that was a treat, though we agreed we'd rather not meet under such circumstances.

So far, we're still looking at a discharge once the team is happy with the level of Ava's medications for seizure control. She had a short one after dinner, so we'll see what that means for tomorrow. The best moment of our day was getting wheeled out do the tiny shared room, and into a spacious private "suite" around the corner. Whoever was responsible for that upgrade gets a raise! We'll definitely sleep better without a roommate. Speaking of, Ava's asleep, so I should try to join her before they come to check her vitals at midnight. Thanks for all the prayers, texts, voicemails and help with meals! We're so grateful!!

Scary night, Sleepy morning

2011-11-09T12:32:00.001-08:00

After a few days of throwing up a lot at home but slowly seeming to recover some from her shunt surgery, Ava had two small seizures on Monday night. We were told to watch her and see if her brain "cooled off" over the next few days. Last night, Matt and I took a few hours to go to dinner in between Ava's feeds...our first date without her! Praise God for Miss M!

At 12:21am, Ava finished a bottle and started seizing. After 20 minutes, we called an ambulance and it was another 50 minutes before she was given medications to stop her longest seizure to date. We've been able to rule out a shunt malfunction and recurrent hydrocephalus, so most likely we just need to increase her medications and address her vomiting so she can keep down the medications she's getting!

Here's our little Bean resting comfortably under the watchful eye of a new little lion friend. I thought he looked strong and brave, just like Ava is. They're perfect for each other.

Recooperating

2011-11-05T20:11:00.001-07:00

Discharged

2011-11-05T13:51:00.001-07:00

We headed home this afternoon...thank you for your prayers. Ava's stable and we all just need time to heal. We're looking forward to managing our circus while all under one roof.

Overnight

2011-11-05T07:01:00.001-07:00

Ava had a stable night, will most likely be transferred out of the PICU, and could possibly go home if we're comfortable with her pain management. She didn't have any more seizures or apnea overnight, but she also didn't sleep much. Praise God for our friend, Jenny, who sat and held Ava most of the night so I could try to rest. She's comfortable and resting now. As far as I know there was no puking in the Harms House last night. We'll see what the day holds, and pray for grace sufficient.

Too Much

2011-11-04T22:13:00.001-07:00

Two weeks ago, Ava was admitted to the hospital with seizures.

One week ago, she was home, not seizing, but still pretty sedated, and throwing up many of her feedings. Her vomiting was blamed on reflux and her sleepiness attributed to her seizure meds. She was expected to perk up after a week or so. Elizabeth was down with a nasty cold and a UTI that would thankfully remain out of her bloodstream.

Two days ago, Ava's feedings suddenly dropped off and she started sleeping a bit more and eating about half of her previous volumes. Ruby was up Much of the night coughing and miserable.

Yesterday, I looked at Ava and thought her head looked just a bit big and felt her fontanel (soft spot) and thought it felt full. (the soft spot bulges when the brain fills with fluid) Our helper, Miss M was sick with some sort of food poisoning. Hannah and Ruby were both up coughing and puking in the middle of the night.

Today? While Matt was a having a prescheduled outpatient surgery across town, a head ultrasound was ordered to put our hearts at rest. Only it didn't make us feel better. Ava's hydrocephalus was back. Her shunt was malfunctioning and would need to be "revised". Surgically. Today.

So we flexed. Miss M could stay an extra night. A friend took Elizabeth and Ruby to the Fall Festival at school. A friend came to sit with me while Matt recovered at home.

Initially the results of Ava's surgery were glowing. The surgery worked to fix the blocked valve and reduce the fluid pressure. She'd be transferred to a room for observation and we'd be discharged in the morning. But shortly after surgery, Ava began having seizures and having apnea episodes, where she would stop breathing and start to turn blue. It was horrifying. So instead we went to the Pediatric ICU for closer monitoring. Since arriving, she hasn't had any episodes of apnea or seizures, but when the rest of the anesthesia wore off, she clearly became uncomfortable and after trying all sorts of ways to comfort and hold her, she's now resting for a moment in a friends arms, getting morphine in her IV.

We need rest for our sweet one, and ourselves.

Operation: Live-In

2011-11-01T19:37:00.001-07:00

On Sunday night, we welcomed a wonderful young woman into our home and into our lives. Through a number of twists and turns, we believe God lead us to each other and are carefully pursuing the possibility that she will live with us at least through December to help our family through whatever is ahead. Some of you have been so generous to contribute to a help-fund for us, and many of you have been praying desperately for God to help us for some time now. "Miss M" is uniquely qualified having grown up in a large family herself, and I feel so I feel entirely thrilled that she's been able to jump in so quickly. But beyond her qualifications, her presence has been an immediate blessing...and as a bonus, she doesn't mind being puked on! (a prerequisite to join our family!)

To give you a little peak:
*Sunday night, we still didn't know if Elizabeth would need to be admitted, but had so much more peace as we went to sleep, knowing we had an extra set of hands if E spiked in the middle of the night and we had to take her in.

*Monday night, Elizabeth had insomnia and would sob every time I tried to leave her room, so I just brought up my pillows and slept on the floor, soon to be joined by a coughing Ruby. Both girls took turns needing me throughout the night, and it was so wonderful to be available to them, knowing that if Matt needed back-up downstairs with Ava, Miss M was available. I was able to mother them and nurture them without trying to juggle every single crisis in the house at that moment. I honestly didn't even mind that I wasn't sleeping! THAT is a miracle. :)

*This afternoon, I remembered at the last minute that I had a hospital appointment for Ava and had to rush out the door. Miss M was completely available, already engaged with the girls and able to carry on the day without the girls even blinking. In fact, I don't think they even realized I'd left!

*This evening, with Miss M.'s help to keep our "wanderers" from wandering off, we were able to bake together, enjoying mixing, stirring, pouring and tasting...what a blessing.

Are you breathing a huge sigh of relief with me?? I told Matt last night, "Honey, I feel like we might just be able to live a little!"

So thank you for helping make her presence in our lives a reality, through your gifts, your prayers and for your encouragement and validation every time I expressed the feeling that hiring help felt like a luxury. I feel like I'm getting a glimmer of what it will be like to enjoy my children, and not just manage them in and around crisis 100% of the time.

It Just Doesn't Stop

2011-10-30T19:46:00.001-07:00

Matt spent the afternoon at the hospital with Elizabeth getting cultures drawn after she spiked a fever this morning. She has a nasty UTI, so they're starting her on antibiotics, and will swap to a big gun one if her blood culture comes back showing there's also bacteria in her blood. Ava's reflux is worsening, complete with projectile vomiting multiple times a day, but we seem to have gotten the upper hand on her seizures for the time being. We need a break. Soon. Another hospitalization does not seem doable right now...

Wednesday: the New Friday

2011-10-26T12:24:00.000-07:00

Ava has been seizure free for 34 hours, so we've gotten the go ahead to head home this evening (instead of Friday) and follow up as an outpatient. Thank. You. God.

This picture is a good indicator that we're not completely "back to normal" yet. At home, unmediated, she NEVER sleeps on her back OR unswaddled...so she's still a bit sedated from her medications, but she's been slightly more alert, and continues to eat ok (albeit with frequent vomiting), so they're willing to let her go home.

Thank you for your faithful prayers, encouraging emails and comments, phone calls and meals. We have a lot of unknowns ahead of us as we, once again, grapple with a new diagnosis. Here's to working it out in our own home!

2011-10-24T20:14:00.001-07:00

Today was much like yesterday. Ava continued to have a few seizures, and the new attending on her case tinkered with her meds. He's an epileptologist, (an neurologist who specializes in epilepsy) so hopefully he'll have some bright ideas that will get us home soon.

So far, we don't know if we're chasing a problem that's getting worse, or if her seizures are stable, and we just haven't reached the magic "therapeutic level" where she's medicated enough to stop the seizures. So we wait and pray and wait some more. A few friends from church came to pray over Ava tonight, and that was a real blessing.

Our God is still doing miracles.

So we'll just keep asking for one.

Sufficient for the day...

2011-10-23T14:40:00.001-07:00

...is the trouble thereof! We were hoping to go home this afternoon, but Ava had another seizure, so she's getting bumped up on her new med, and now they've set the bar at 48hrs without seizures before we can go home. We're disappointed of course, and now direct our energy to trying to get things set for the week ahead.

The good news is, Ava's seizures don't seem to hurt her at all. They are more an indication of brain injury than they are causing any brain injury. They aren't the one's you've seen on TV that scare the daylights out of you. They're more like a twitch and occur like a hiccup...with regularity for as long as 7 or 8 minutes. The goal is to get her up to a dose of medication that will allow her to be seizure free at home. That might take a few days. So we wait, and pray for her little brain and body and spirit to have peace.

How are we doing?

Our girls have been singing (sometimes screaming at the top of their lungs) a new song all week from Matthew 6:34: "Do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own!"

Seriously? Out of the mouth of babes.

As long as we don't look too far ahead

As long as we don't try to make projections about what this means for Ava and the rest of our family

As long as we remember that God has never failed to provide for us

As long as we accept the day and whatever comes as from his hand, for our good and as an opportunity to see him provide, for his glory

As long as we remember that our lives, are his, to be spent on His priorities

Honestly, unbelievably, amazingly...we're doing fine.

So we take things one day, one moment, at a time.

The girls are happy at home for the afternoon with Ms. Marcia, Matt will hopefully have his latest paper submitted by the end of the day (taking a big load off his shoulders) and I've got some great leads on a consistent helper for our family. While Ava's been here, both Matt and I have had the chance to spend some sweet time with the big girls. I enjoyed a library and park trip yesterday, and he walked the girls down the block to watch the runners in the St. Louis Marathon this morning. Tonight we'll all pile into Ava's room and have a family meal so the girls can see their sister. Probably, Matt will feed them all Dairy Queen blizzards before sending them home for ME to put to bed. Our life is crazy, but it's ours, so we might as well enjoy it!

We are thankful...
*For Elizabeth's school...a source of great stability for her right now
*that Ava is bottle fed...that I've already wrapped up pumping and am not struggling to deal with that in the middle of all this. God knew. More on that in the next post, but let's just say, His timing is perfect.
*for our home, close to this wonderful hospital
*that Matt recognized Ava's first seizure for what it was (go neurologist Daddy!)
*that Matt has enough friends and collegues working on Ava's case to field a chess team! As a result we are getting great care...including breakfast, hand-delivered two mornings in a row!
*once again for friends who the girls adore to step in to care for them
*for His grace, which inexplicably makes it possible for us to live and breathe and have joy moment by moment.

2011-10-22T14:52:00.000-07:00

Ava's MRI looks stable. The bottom line is, her hydrocephalus and shunt are not the cause of her seizures.

The results from Ava's EEG are not good. Ava has seizure activity all over her brain.

Our sweet little bean has epilepsy.

I couldn't write the words last night. I hoped that in keeping them out of print, I could make them untrue. But then I remember that it is God who determine's her function...God who created her and God who knows every hair on her sweet little head. This is not a surprise to Him. Still, as we are anytime our little ones suffer...we're sad.

We'd hoped to come home today, but Ava's had two lengthy seizures and thrown up most of her feedings, so they've given her a muscle relaxant and are changing her medication, and we'll remain here tonight. She'll need to be awake and alert, (eating normally) and not having seizures before we can go home. Right now she's not having seizures, but she's been asleep for most of the day.

I got to spend some time catching up with a NICU friend this afternoon, which was nice. Her daughter Aleaha, is Ava's little friend. Aleaha just had open heart surgery...so here we all are again...taking things moment by moment, only by the grace of God.

EEG leads: The next generation of hair extensions

2011-10-21T12:53:00.001-07:00

Ava's wrapped up her MRI and EEG...so now we just wait for the reports. With all the friends and colleagues Matt has up here, I'm sure we'll get an unofficial read pretty quickly. She's super sleepy, so I'm not complaining (it's better than grumpy at this point), but we need her to perk up and start acting like herself pretty soon. She can eat now, so she's taking a bit from bottles. If the seizures stop, we might have another night of observation, and then get to go home on her new meds...we're not planning on it, but glad it's on the table.

So far...

2011-10-21T08:10:00.001-07:00

Ava had 9 seizures overnight and then had a 4 minute long one just an hour ago. Matt is still with her and I'm heading up to swap with him so he can get a bit of work done today.

I don't know if we consider it "good" news, but so far all the tests have come back clean...

*her blood and urine aren't growing bacteria
*her spinal tap didn't reveal any infection
*her CT scan did not show any enlargement of her ventricles (fluid in her ventricles would be an indicator that her hydrocephalus is back)
*her "shunt series" (an xray) did not show any breaks or kinks in her shunt, so her hydrocephalus is stable, and not the likely cause of her seizures

At this point, the most likely theory is that her shunt is causing/has caused brain injury and that is resulting in her seizures as her brain has matured. That also seems to point to a longer-term problem, on that will need medication and regular follow-up.

*She's going in for an MRI now, and will get an EEG later today hopefully. She's definitely showing signs that her system is being affected by all the seizures...please continue to pray for her little brain and heart and body.

Our sweet in-town Auntie, Marsha is here with the girls and Elizabeth is having a regular day at school...

I'm off to see my sweet one.

Please Pray for Ava

2011-10-20T20:51:00.001-07:00

Earlier this evening, Matt took Ava to the ER after she had what we believe to be her first seizure. While in the ER getting worked up she had another seizure, so it's a blessing she's there and will be admitted so she can be properly watched and treated.

Please pray for:
*Sweet Ava. She hasn't been able to eat since 4:30 this afternoon and she's bound to be pretty grouchy! This is her first round of "stuff" since being discharged and I'm sure it's overwhelming her little system.
*Matt who is with her and will need all his tricks to comfort her overnight.
*Elizabeth, Ruby and Hannah Mae, who once again need grace for change, the absence of a parent and the stress that introduces into our already wonky life. Ruby is the most sensitive and intuitive and could definitely use extra prayers for peace and rest.
*Guidance and wisdom for the doctors who are treating Ava...we are trusting the Lord will guide them to the cause of the seizures.

I will post updates as I'm able. If you want to get these updates by email, enter your email address in the box in the upper right corner to be added to the blog distribution list. (it's private and unpublished)

As I told a friend yesterday...and I still believe today:

God IS behind and before us. He is never surprised. He IS the provision we need and has already making the way for us to walk through this.

Thank you for praying,

I guess the diaper pail was full...

2011-10-17T20:23:00.001-07:00

Beautiful Blue Eyes

2011-10-16T20:08:00.001-07:00

We got wonderful news from Ava's opthomalogy visit this week! Ava's
eyes are healthy and haven't been injured by her hydrocephalus. Her
nerves and retinal vessels are healthy and we can hope that the
sypmtoms we're seeing can be explained by her prematurity and will
settle out as she matures. We'll test her vision in Jaunary with a
test that is most accurate when she's over 4 months old (adjusted).
The test will help us know what she's seeing and what her brain is
processing.

So until then, we will keep staring into those beautiful blue eyes and
trusting that whatever she's seeing, she knows how much her family
loves & adores her.

She's Six!

2011-10-14T20:14:00.000-07:00

Happy Happy Birthday to our dear Elizabeth Joy. It is a great delight to celebrate you. Cookies for your class, a birthday field trip and a cupcake date for big girls...what a weekend!

Elizabeth's IEP Update

2011-10-10T20:35:00.001-07:00

Because I know a some of you also have little ones needing IEPs, I

thought I'd share that today's IEP meeting was wonderful. I'm amazed at
how much I truly like each person on her team! Each therapist and educator genuinely strives to understand Elizabeth, how she works, thinks and feels and seeks to best tailor their approach to help her thrive. I honestly couldn't ask for more.

Because she has a shadow (an adult assigned to her) for the entire school day , we're going to suspend of the 90minutes each day that she's been getting pulled into Special Ed and she'll be mainstreamed the whole day! The idea is, a shadow accomplishes what TLC would (we hope) and she gets more opportunities to flow, learn and interact with her classmates, while still having 1:1 support for all the areas of difficulty. For her social development, especially, it's a big win. She'll continue to have all her therapies as well as two 30 minute social skills practice groups each week.

I'm especially thankful for her teacher, whose idea this was, and for her shadow, who will be key to implementing it. These two women are such a gift.

A long overdue update

2011-10-10T11:47:00.001-07:00

Ava in a moment of sweet sleep. She needs weighted bags next to her so she doesn't startle and get stressed out.

Ava at 7 weeks! (adjusted)

Ruby, pre-staples, and Elizabeth, post-fracture, enjoying a moment at the park

Hannah Mae...growing up so fast.

************

I've delayed posting an update because again I'm torn about what to say. I want to share with you all the ways God is providing for us daily that enable us to survive. He is, and we are. But the fact that we know we are on a path of his choosing doesn't mean the days aren't hard!

At the end of the day, we know it's a process and a journey. We're in it, we're on it, and we continue to covet your prayers.

First the good stuff...

*We are so thankful for sweet friends from church who come to spend time with our girls...On Friday Matt, Ava and I got to go on a date for Daddy's birthday (today!) and then we got to run some errands, also sans big kiddos, on Sunday...It is my dream to one day be able to "tow my own freight" and run my home and care for my girls without help...but until that happens we are so blessed by the village that is surrounding us to keep us afloat.

*Matt's papers are under review at a few journals and so far we still have hope that they'll be published...which would be a complete answer to prayer and a nice prize for lots of hard work.

*Matt has a stable job, we have medical insurance and a warm safe home, a car that is reliable and food in our fridge. So many of the difficulties we face would be much more stressful if we were under financial strain. We are truly blessed.

*We are rejoicing at the birth of my niece, Avianna. She joins another gaggle of girls (3!) and we praise God for her safe arrival.

Now if you're looking for things to pray for when we come to mind...(I'll warn you, the list is long!)

Ava's been home for 8 weeks and we're still taking things one day at a time. As I wrote to a friend last week, "In my best moments I'm juggling a circus and amazed that we're actually pulling it off! We've had a few outings as a family and managed to make it to church two weekends in a row. But then there are lots of moments when I absolutely feel like I am losing my mind." Adding another set of therapy and dr. appointments as well as all the paperwork that requires has been a challenge to say the least. The joy of being home with our beautiful girls, all under one roof is constantly threatened by fear and stress about Elizabeth's health or Ava's prognosis. It is my daily battle to stay present in the moment and refuse to worry about tomorrow. We struggle to hope and plan and dream of our future, while dealing with the daily realities and nearly constant stream of challenges...(not to be left out, Ruby had a run in with a wall last weekend and required 4 staples in her forehead!...the excitement never ends)

Ava has finally begun gaining weight at a better pace since we've transitioned her to bottle feeding only. However, she now shows trouble coordinating her suck/swallow, necessitating a swallow study as soon as it can be scheduled. She'll drink glowing liquid while getting a video X-ray to see if any liquid is getting into her lungs. This might lead to improved therapy or adaptive bottles. It's very frustrating, but her physicians and therapists are not surprised at the problems and believe they stem from the unexplained brain damage her MRIs have shown. Even outside the feeding arena, Ava's transition home has been a rough one. She spends much of her awake time crying unless being held (I've gotten pretty creative about carrying Ava and Hannah together!). She has a very narrow list of where she'll sleep. A list that unfortunately excludes her bassinet, the boppy, her bouncy seat, her car seat, and usually, her swing. We're not sure if it's a sensory issue (again due to the brain damage) or catching up on the holding time she missed in the NICU...

Ava also had a follow-up hearing test (an hour long test while she slept and they sent sound waves into her ears and measured the response from her cochlea, brain and tympanic membrane.) She failed the first go-around in the NICU, so this was the make-up exam. Unfortunately, she failed again. The test suggested that her ears receive sound signals without any problems but then have trouble sending that information up to the brain for interpretation. She may "hear" sounds but be unable to recognize them as speech/interpret them. So we wait and see...and test again in 6 more weeks.

We are also worried about her eyesight. She makes very little eye contact and very rarely follows objects or lights. She also has trouble keeping her eyes straight. So we've moved up her ophthalmology appointment to this coming week as well since we've been noticing she's not making much eye contact. All of these things might "fall into place" in the coming weeks, but they could also be indicators of more significant problems. Each of these appointments are hours long and a strain on her, so would you pray for grace and peace in her little body?

Autumn comes and we enter the season we have yet to pass through without major illness for Elizabeth. Her 6th birthday is on Friday and so far, she's celebrated 2 in and 3 out of the hospital...this year, we're hoping to improve those stats! Her fractured clavicle heals slowly and she'll wear a brace for a few more weeks to stabilize her. She's had two viruses since starting school and so far she's cleared them both without drama. (she has though, been kind enough to share them with the rest of us) She's grown tall over the summer thanks to growth hormone shots and with a new set of orthodics and hearing aide fittings scheduled over the next few months, she'll be in tip top shape come January. She continues to love school and is truly thriving there. I have her new IEP meeting this afternoon, to discuss her progress with her educational team (teacher, aide, therapists, school psychologist etc.) and to set goals for her coming year. Would you pray for wisdom for me, and that the team would be able to get a clear picture of what she does and does not know so they can accurately assess her progress?

And finally, in the middle of all this, two weeks ago, Matt's sister went into the hospital only 22 weeks into her pregnancy, and their son Louis died before he could be born. We are grieving with them and would appreciate your prayers for their family.

We know God is faithfully weaving His story in our lives and trust He is getting glory, even as we struggle to walk out the path He's chosen for us. We depend on His mercy every day, and are so thankful that when life all around us seems to be in complete chaos (at least a few times a day!) He is ever near, and never out of control.

Progress

2011-09-22T21:19:00.001-07:00

We've had Ava home for four weeks and our lives have been full!

First, the update on Elizabeth:

Since we might fall asleep if things got too calm around here...a week ago Elizabeth slipped and fractured her clavicle! She was incredible stoic and endured the X-ray (still one of her least favorite hospital procedures) and now wears a "figure 8 brace" whenever she's awake. Praise God for our sweet friend who has adopted our family and become our in-town Auntie, who rushed over so I could take E & A to the dr and hospital. All in all, it was not as traumatic as it could have been, and now we just try to keep Elizabeth from over-using it. According to her teacher, her classmates have decided it's a parachute!

In other news, what a difference a year makes! We had a wonderful outing to the hot air balloon festival last weekend and Elizabeth, though clearly uncomfortable, did a great job coping and was able to stay within sight of the ballons for almost an hour! The last two years we've tried to go to the balloon glow and Elizabeth has had major panic attacks so it was a huge relief to see how much progress she's made.

Last week Elizabeth had her routine ear and hearing exam. The great news is her ears look great from an infection standpoint. However her Audiogram shows she has mild to modate conductive hearing loss, and as a result, we'll be getting her fitted for hearing aides as soon as we can be worked into the schedule...probably a few months from how. In the mean time, we're working to get her an amplification system (a small speaker she'll carry around with her) which will hopefully help her with her overall understanding of what's going on in school.

She continues to love kindergarten and we are so thankful for her full time Aide, her teacher and the wonderful school that has done a super job so far providing support for our sweet angel. She's been in school for 4 weeks, and has yet to get sick with anything! Praise God!

Ava has been doing pretty well at home. She's 4 weeks adjusted (which means that although she's four months old, she's acting like a four week-old who was born on her original due date of Aug. 18) she's given us a few smiles and has started cooing! All these are reassuring signs in light of her MRIs) Sadly, she hasn't managed to coordinate nursing as well as we'd hoped. In addition to some behavioral things, she's dropped from the 50th percentile for weight (while in the hospital) down to the 15th percentile. (Harms babies don't do that!) The first half of September she only gained three ounces! So last weekend we started bottle feeding her at every feed and she took off, and in the last five days has gained almost four ounces! So as sad as I am to give up nursing her, I'm so relieved to know she's capable of eating what she needs to grow and thrive...even it it's from a bottle!

Thank you all for your continued support and prayers. It has been busy and at times completely overwhelming but we have not been left completely alone. After my mom left, matt's mom came for a spell and now that she's returned home, we're slowly finding our footing. Thanks to the incredible generosity of many friends and family, we've been able to hire someone to help me a few hours here at home a few days a week. We've also been adopted by a few gals from our church who want to come love on the girls regularly and intermittently we are still humbled and blessed to receive a meal. God continues to take care of us and most often it's through you. We are eternally grateful.

--
www.msharms.blogspot.com

Firsts

2011-09-03T09:04:00.001-07:00

First outing with all four girls! (picking up Elizabeth from school)

First time Ava peed on me! Doesn't she look happy about it? (Can you believe she could have fit in my belly if she'd made it to term??)

First walk as a family of six.

Overdue Update

2011-09-01T19:56:00.001-07:00

Every day I plan to post an update, and every night I fall into bed instead because I can't even put two words together! We are still happy and tired at home. Ava is three weeks old (when we adjust for her prematurity) and is doing a beautiful job of acting her age. She's really got the hang of eating and moves easily between nursing and bottle feeding...yay! She's still getting her nights and days worked out, (read: she sure likes to play around 2am!) doesn't like her car seat, sure likes to be held, but hates to have her diaper changed. Yep, she's acting like a newborn! She's gaining weight and so far everyone is happy with how she's doing...especially her sisters, who seem to think she's the best thing ever.

Grandma Harms arrived for a spell and is thoroughly blessing us...Matt and I continue to be overwhelmed by our parents' generosity in giving us so much of their time these days! Please pray for Grandpa who is navigating all of his cancer treatment and follow-up appointments without his sidekick this week.

Lastly, I must report that for all the worrying I did, kindergarten has turned out to be a complete blessing for Elizabeth and our entire family. She is amazingly happy, energetic and engaged and not one of the fears I had has come to pass. She hasn't shed one tear, has nothing but positive things to say about her days, is enthusiastic about her classmates and the variety of activities they do each day and is truly thriving. PRAISE GOD! Some of you have asked about her school situation: she's in a mainstream kindergarten class at a nearby Charter School, spends 74% of her time there, has 90min of special ed a day and then sees OT, PT and Speech Therapy throughout the week, as well as participating in a social skills practice group! Most importantly, she has a shadow with her all day, including at lunch and recess who is there to support her and make sure she's flowing with the class. Ms. R has been an angel and Elizabeth's successful transition to school is much to her credit. Feel free to email me if you have more specific questions.

Thank you, THANK YOU for praying and thank you for caring for our family! I'll try to post pictures soon...

Alive & Well

2011-08-21T20:01:00.001-07:00

Thank you Karyn for the beautiful blanket!

Thank you for your thoughts and prayers during our transition home. We are tremendously thankful for my parents who were here to help us juggle:

*Elizabeth's first week of Kindergarten (SUCCESS!)

*Matt's Boards (done and over with and he's pretty confident he passed!)

*Two check-ups for Ava (she's eating well, growing well (7lbs 4oz now), sleeping well...acting like a newborn! We also received word from the experts who'd looked at Ava's MRIs and they agree that they really don't have any idea what they're seeing! We're taking that as wonderful news and will continue to pray for complete healing and treat her like the healthy babe she is.)

*and our first weekend as a family of six all under one roof.

God continues to be gracious and things are going well. I'd love to give more details, but I must sleep now. I'll try to post something more substantial later this week, but wanted you all to know our first week together has been as smooth as we could have hoped.

Ava Came Home!

2011-08-16T19:49:00.001-07:00

Long story, full day, much to be thankful for.

Ava is home.

Goodnight!

Love,
Matt, Sara, Elizabeth, Ruby, Hannah Mae & Ava...Together At Last!

Three, two, one...

2011-08-16T12:53:00.000-07:00

This morning the team agreed that if the jumped through a few hoops today, Ava could go home tonight! Needless to say, from that moment on, it's been pretty high-stakes. The last test is two hours sitting in her carseat without "dropping her sats" (heart rate, breathing and oxygenation)...she started at 2:35pm I'm leaving now to pick up Elizabeth from kindergarten and then I'll be back to bring our littlest princess home!

And then some days, our life feels like drinking from a fire hose

2011-08-15T20:54:00.001-07:00

*Elizabeth started kindergarden...another post altogether. We survived...and she had a wonderful day. I'm so grateful I was able to drop her off AND pick her up at the end of a day which felt far to long for this mama.

*Our weekend in the FPU was a great success and now we have ourselves a nursing machine! So I'm staying overnight in a chair at her bedside (no FPU tonight!) and will dream of the snuggly days ahead in our own bed.

*We tried the bottle after a hiatus to work on breastfeeding, and Ava was brilliant at it! She'll have to take two fortified bottles a day when she goes home, so we're thankful we won't have to give those through an NG tube...

*Finally, Ava gained 1 ounce overnight and now weighs a perfectly reasonable newborn weight of 7 pounds! If this continues, we should be able to go home in the next few days while my mom is still here to help with the transition. I guess it's time we bought some diapers!

--
www.msharms.blogspot.com

The Countdown Begins

2011-08-14T19:56:00.000-07:00

Ava did great this weekend! In fact, things are going so well, (and thanks to a cancellation) we get another night in the FPU. After two nights of losing a bit of weight, Ava had a fantastic day of eating and then filled four diapers...only to hold steady on her weight tonight! So...if she can keep some weight on tomorrow and gain 1/2 an ounce two days in a row, then we can go...home! How sweet that sounds.

Tomorrow morning, Matt will come to the hospital early so I can drive home to get Elizabeth ready and drop her off for her very first day of Kindergarten. Needless to say, tomorrow will be a big day for all of us!

Wireless Wonder

2011-08-13T19:45:00.000-07:00

Ava's first night in the FPU went beautifully! I still had to wake her up every 3 1/2 - 4 hours, but she ate by mouth at every feed. She did not eat her goal volume, but she stayed hydrated enough that we can try it again tonight. For the second night in a row she lost 15grams (half an ounce) so that needs to turn to weight gain in order for us to move toward discharge...but we're moving in the right direction with all oral feeds. Now she just needs to feel those hunger cues and wake up, and eat a whole meal! Easy peasy!

In fun news, we have one of my favorite nurses tonight, and she suggested we pull Ava's NG tube since the plan is not to use it for now...isn't that a beautiful face??

Thank you for all your prayers. Ava's nursing is definitely improving, the girls had a great day and Granna got a little rest too thanks to a sweet friend who took the big girls to the park & Matt's studying went well. One day down! Now, sweet Ava is tucked in for a few hours, so I'm going to try to rest too!

Goodnight,
Sara

Ava's Big Day

2011-08-12T19:36:00.001-07:00

Thank you all for your thoughtful emails and notes of encouragement over the last few days (and months for that matter)! We have been encouraged to know God is faithfully working in all this. Even though we don't always respond, please know that we read every email and blog comment and are so blessed by your words and the heart behind them.

Ava's doing well overall. She's almost at 7lbs and looks like she could be born any day! :) (my due date was the 18th) The neurologists continue to be stumped by additional abnormalities they're seeing on Ava's most recent MRI and are sending out her file to experts around the country. In the mean time, we are taking advantage of the lack of certainty to remind ourselves that God is the designer of her brain! And even with a diagnosis, God is the one who determines her function.

Now for a NEWS FLASH: In an effort to jump start Ava's round-the-clock nursing (joy!) and move us one step closer to discharge, she and I have been moved to a "Family Practice Unit" for the next 48 hours. We'll share what amounts to a little hotel room (bed, crib, bathroom, desk, cafe table) inside the NICU, for the purpose of letting families do a dry run for 24-48hrs before leaving the NICU entirely. This all happened this afternoon, so none of us had preparation time, but it's a great development and we're praying Ava will begin to wake up and eat vigorously...and then have the weight gain to show for it! We'll still need to jump a few more hurdles before discharge, but this would be a huge step in the right direction.

Thank God my mom is here to help right now. She'll be home with the big girls all weekend, while Matt studies for his upcoming (on Friday) board exams...(no, the tests never end!)

We would all appreciate your prayers for:

~Ava's brain

~Ava's nursing and good weight gain

~Peace and grace and fun for the big girls at home with Granna (and stamina for our dear Granna!)

~Efficient & effective study time for Matt

~Preparation of Elizabeth's heart (and mine too) as she gets ready for Kindergarten to start on Monday. I'll update more on that later

Thank you for continuing to carry our family in your hearts.

Love,

Sara

Sent from my iPad

2011-08-09T07:45:00.000-07:00

God is rewriting our story again. As much as I would love to feel blissfully happy, excited and super-spiritual right now, the truth is, I'm not.

I'm sad.

I'm tired.

I liked my story. It was filled with my dreams and hopes. Good dreams. Dreams that involved nurturing my daughters by nursing them, staying home to raise them, exploring our world together, home-educating them. It was important to me. It gave me a little feeling of stability. Stability that comes from planning and hoping for something...something that I thought might work out. After all, I look around and lots of people get to make plans and have them work out. He whispers "...you, follow me". And I drag my feet. I don't feel excited. The enemy whispers, "This is probably going to be hard. This will probably hurt." And I can't disagree. But then, we've had nearly six years to see his faiththfulness in the hard and hurting times.

The root of my hesitation is that His faithfulness doesn't always make our life easy. God doesn't always swoop in like we think He should. He keeps our feet from slipping, but He doesn't always smooth the path. And then sometimes our feet do slip, and He catches us when we fall.

The mercy in this moment is that in spite of everything, we know in our core that God is good. He is faithfully weaving His plans for our lives and no matter what, no matter where, He will be present, and His grace will be sufficient. But there is and will no doubt still be pain, and sorrow and loss. Our only hope is in His assurance that somehow that too will be used for His glory. Slowly, moment by moment, that becomes the aim...His Glory.

These lives we offered up and He really took us at our word. We're His...no matter the cost.

Many of you write and share your stories saying, "But that's nothing compared to what you're going through"...and while that's natural, it's not true! It's everything! Matt always says, "Your biggest thing, is the biggest thing." It's your opportunity to take your hurt, your disappointment and offer it up to God, refusing to attack His character and His heart, choosing instead to believe.

Matt and I are choosing to see this pain as a gift, either sifted through or directly from the hand of a loving Father. It presses us into Him, frees us from idolizing our comfort, and forces loose our stranglehold on our script, so He can take the pen and write a new storyline, with HIM at the center. We choose to yield to it, let it accomplish its work in us and bless His name.

Help has Arrived!

2011-08-09T04:41:00.000-07:00

Ava's MRI Results

2011-08-05T19:48:00.001-07:00

After waiting all day for Ava's MRI, we then waited for the Pediatric Neurologist to look at it, and then waited some more for the Neurologist and the Fellow to discuss it, and finally, for Matt to walk over from work so we could go through it together. We are so sad to share that the results are not what we were hoping for. The brain injury that was visible on the first MRI prior to Ava's surgery, is still visible, and has not improved now that her brain is not squished. We can't know exactly how this will impact her development, but in her recent exams by the Pediatric Neurology team that sees her every day, she is showing signs that point to early cerebral palsy.

We are, of course, so sad. We would, of course, dearly love your prayers and support. We are simply too overwhelmed to look to far down the road and ask all the "what if's". We still need daily grace for the hospital/home routine. We still need daily wisdom to know how to meet Elizabeth's needs. Elizabeth starts Kindergarten on the 15th and we need to wrap our brains (and my heart) around that. In each of these things, we can only cling to God and rely on his faithfulness one moment at a time.

He has not changed.

He is good.

We can trust Him.

May God get glory from even this.

38 Weeks

2011-08-04T21:31:00.001-07:00

Ava is 38 weeks old and beginning to look more like a newborn every day. She even offered up a little smile yesterday! Tomorrow she'll have her MRI to follow up on how her shunt is working at minimizing her hydrocephalus. On the outside she looks good, but we'll be relieved to get confirmation that her ventricles (where the fluid collects) have returned to normal size. We're also very anxious to see if her brain has recovered from being squished.

Would you pray with us that her brain would be healthy and uninjured?

On the home front, we're surviving. These last few days have been really hard and both Matt and I need strength to press on. Ava's nursing isn't going particularly well and while it can simply be explained by the fact that she's not supposed to be here yet, we're discouraged that it's looking like feeding issues will keep us on the hospital for longer.

Would you pray that I would be patient, that Ava would begin to nurse with gusto, and for encouragement for my heart?

Would you also pray specifically for favor for Matt at work?

I'll let you know how the MRI goes...

Big girl!

2011-08-01T14:06:00.000-07:00

Ava just took her first "all PO (by mouth)" feed! She nursed for 13 minutes and had some good burps and fell fast asleep. If she's not careful, someone might just say she's ready to go home soon! ;) It will still be a while because she has to do that every three hours and gain weight over a few days, and right now she's still sleeping through 4 of her feeds and only taking about half of her "goal volume" by mouth at the other 4, (the rest gets pumped through her NG tube) but this is the first step! Thank you for those prayers! My mama's heart is very happy. Now I'm off to see my big girls!

How are you doing it???

2011-07-29T09:40:00.001-07:00

We just keep waking up! Literally. I'm so thankful for a good friend who, when asked the same question by me a few years ago, said, "I just keep not dying! So I wake up and do what's in front of me, by the grace of God."One day at a time, moment by moment, by the grace of God. Our days are not easy. We don't spend our evenings in prayer and scripture reading...we crash and pray for God in his mercy to extend our night and wake us up tomorrow. We have less emotional resource, less energy, less "bandwidth" than we've ever had and yet every day we make it through and every day we are encouraged by God's faithfulness to us. He hasn't let us go. He's here. He's in control. He's working in all of this. and we have peace. Real peace. Amazing. It's as if rather than drinking from a pool of collected encouragement and support, we're getting daily nourishment straight from the source...I'm getting the idea that it's exactly as God would have it.
Every day, I want to stop and name all the things God is doing, to post them here, so you can see too...I see them everywhere. He's so kind to us. Instead, the days end late and start early and I hesitate to post because my thoughts are barely coherent! So the list grows until I feel like spilling over and I know I have to stop and write these things down, so I won't forget.

~A sermon that blessed our hearts and reminded us of God's good plans.

~A comment on our blog, an email or voicemail to remind us we're not alone.

~A babysitter who arrived with a chai latte in hand for me.

~Meals from people we don't even know

~A kind nurse who tells me I'm doing a good job.

~A friend to remind me of the truth and listen to my discouragement without trying to "fix it."

And perhaps most importantly, we're amazed at how many of our dear friends and family are walking through hardship, and choose to pray for us through their own tears. These testimonies surround us and allow us to see God at work.

~Friends choosing the hard path of fostering a baby only to deliver him to his birth mom in her rehab facility along with gifts and prayers.

~A family choosing to press into loving a child working through the pain of her abandonment.

~Matt's parents fighting cancer together, honoring God with 40 years of marriage and loving each other well.

~My new hero, http://www.kissesfromkatie.blogspot.com/. God's sweet reminder to me that THIS -small children, big messes, challenging schedules, difficult decisions, lots of stress and little sleep, sweet, silly moments, and loads of opportunities to need and receive grace - is my mission, my calling, my path.

~Friends and family pressing into God because of infertility, honoring God in the waiting, choosing to be faithful despite hard things and hope deferred.

We see your lives too. We're built up by your choices and encouraged by your testimonies. We know we're not the only ones asked to do hard things. We're not the only ones facing difficult decisions. And in the middle of it all, Matt and I are so blessed to know you and feel your prayers. Thank you for praying for us. Thank you for sharing your lives with us too! May God get all the glory.

Baby Steps

2011-07-28T21:28:00.001-07:00

One day at a time, Ava is getting bigger (6lbs 3oz!) and stronger. One of these days we'll get to take her home. Until then, we wait, and try not to get anxious about things like timelines and possible complications. She is after all only 37 weeks old and she's quite content to pretend she's still in her own little world. She's slowly improving her nursing, and took her first bottle yesterday (I'll admit, I was emotional about that decision) but she refuses to act like a full-terem kiddo, so we all sit back and wait. Easier for me than for the Dr.s, and harder for me with the Dr.s hovering trying to get this party started! Hopefully I'll get a more thorough update tomorrow. I must sleep now.

Two Months Old!

2011-07-26T09:57:00.001-07:00

Ava's doing well! She's finally waking up a bit more and starting to nurse again. She's had two good feeding days in a row and soon I'll need to start being at the hospital more so she can nurse at each of her 8 feedings a day. She's crossed the 6lb mark and is 19 inches long now! So she's just a bit smaller than Elizabeth was when she was born!

Our sweet nurse put this note on Ava's board last night. One of the curious things about having a premie is that I still think of her
gestationally, so I completely missed her "two-month birthday" because in my mind, she's 36weeks + 5 days! Fortunately, she slept through most of it, so I'm sure we'll have lots of opportunities to have parties in the future.

Thank you for your prayers...we're still standing!

--
www.msharms.blogspot.com

Ava Cozy and Comfy

2011-07-21T18:11:00.001-07:00

This is how I spend my time with Ava these days. She loves to be close and literally falls in to a happy coma as soon as I cuddle her. As you can see by her monitor (those are all good numbers!) she's in baby-heaven. And let's face it's great for both of us. Here's the latest.

Everyone is pleased with her recovery from surgery. Yesterday the Neurologist came by to walk through the MRI results with me and showed me all the areas that appear to be damaged, which they'll be watching on the next MRI.

Would you be praying that the area of her brain which appears injured would fully heal?

She is still sleeping a lot, and winces whenever she's jostled, so she's not yet fully recovered. But she's calm when she's still and we've been given a green light to try to restart nursing. Today she did great! She ate for a good 4 minutes or so, and that's the best she's ever done! That sure made my heart full.

Would you continue to pray for her to wake up and eat? This is the only obstacle to her going home...so let's get this party started!

She's doing well otherwise and weighing in at a hefty 5lbs 11oz! Please pray for no more complications for our little Bean.

Thank you for your prayers for our family. It's such an encouragement to get your emails, comments on our blog and voicemails. You're never intruding by letting us know you're thinking about us! This big girls seem to be in a good grove (total answer to prayer!) and Matt and I are still standing. More on that later.

For now, just know your support and prayers mean so much to us.

Extubated and sleeping peacefully!

2011-07-18T19:38:00.001-07:00

Ava came off the vent around 2:00 and after making her protests known, fell fast asleep on her mama. Praise the Lord for His mercies today. We would appreciate continued prayers...

~ for Ava to remain infection and complication-free!
~ for Ava to recover from the procedure quickly and start to breastfeed with gusto!
~ for Ava's parent's not to drop where they stand! (Read: supernatural stamina for Matt as he works on writing his paper and multiplied rest for both of us. Tonight I fell asleep three times while telling the girls their bedtime story...I'd rouse and wonder what I was talking about?!? It made for an interesting story though!)
~ for Ava's sisters to hang in there and for a special blessing on our tremendous caregivers. God bless these amazing women for loving our girls so well.

Finally, now that we've seen the final report, Ava's MRI from Friday showed that some of her brain was harmed by her enlarged ventricles. It's very possible that this area will recover now that the pressure has been relieved and we are of course praying for that. We'll know more after a follow-up MRI in 3 weeks.

Bless you for YOUR stamina in lifting up our family day after day. Please do not grow weary! Your prayers are having an impact. Matt and I know that in spite of all we're going through, our marriage is as strong as ever, our family is strained, but not broken, our faith is steadfast and we are able to give glory to God...by the grace of God, because of your prayers.

Ava's out of surgery and doing well!

2011-07-18T09:45:00.000-07:00

She's sleepy and still breathing on the ventilator but hopefully she'll be extubated soon. The surgeon said it was textbook and there were no complications. Thank you for your continuing prayers!

Sent from my iPad

Waiting....

2011-07-18T05:05:00.000-07:00

Ava's Surgery

2011-07-17T19:53:00.001-07:00

Ava's surgery is scheduled for tomorrow. She'll either be taken back at 7:30 or 11:30am. We'll find out early tomorrow morning. We would so appreciate your prayers for Ava's protection, for the neurosurgeon and anesthesiologist to do their jobs with excellence and for a smooth recovery. She'll be intubated (given a breathing tube) and go under general anesthesia, and the procedure will take about 45 minutes with time on either side for anesthesia to get her set up and recovered.

While I described the surgery as "routine" in my last update, we are carrying around the reality that she is having surgery on her brain for a condition that--unless God does a miracle--will be life-long and chronic. She will likely always be "shunt dependent" and shunt complications are common. In fact, it's rare to have a shunt go in and work perfectly forever. Sigh. We're also aware that a "shunt malfunction" results in "recurrent symptoms of hydrocephalus" (ventricular enlargement, inter-cranial pressure) which causes symptoms like vomiting, sleepiness, irritability and decreased interest in feeding...all of which are easily attributed to a fussy or sick baby. Left untreated, hydrocephalus "may cause brain damage with physical and severe cognitive challenges." Double sigh. When Elizabeth get's a fever, we jet to the hospital to "rule out bacteremia". From here on out, when Ava gets symptomatic, we'll head to the hospital for a CT scan to "rule out shunt malfunction." I think we need another stay at home mom in our family!

Honestly, Matt and I are running on fumes. Those fumes are the grace of God, and we know He will faithfully carry us through this, but everything else is out of our control. This is hard, and not getting easier and while we are not depressed or ready to throw in the towel, (ask me again in 12 hours) we ARE ready for a nap! So thank you for your prayers. Please don't stop praying. We need grace to get out of bed every day, for Matt to do his job well (that's another story...his mentor is taking a job elsewhere and as a result many aspects of Matt's job and career track are up in the air....crazy timing!!), to love and parent the kiddos right in front of us when we're distracted with wanting to be with Ava. And every day we need grace to simply do "normal life"...dishes, yard-work, laundry, bedtime routines & caring for all of Elizabeth's health and developmental needs. (and that's with a part time helper here every weekday!)

We don't feel brave, we don't feel strong, we don't even feel capable of handling our own life right now, and truthfully, we have no hope in anything but God's character and His word. We don't know how the surgery will turn out, how Matt's work will bear the constant infringement from his "crazy family," or if Elizabeth will start Kindergarten and manage to avoid a hospitalization. We're not being cynical; none of those things are promised to us. But we know that His Word says:

He is good. He is faithful. He loves us. He will never leave us.

That is what we know, and all we cling to today, and tomorrow and if it comes, the day after that.

Thank you for your prayers. They truly are sustaining grace right now.

Love,
Matt & Sara

Our Little Miracle

2011-07-15T21:38:00.001-07:00

At 3:00 Ava had her MRI and afterwards we met with the neurologist and neurosurgeon to discuss the results.

Ava's hydrocephalus is moderate but stable. Amazingly, it was not caused by a hemorrhage, but rather is the result of a congenital malformation (part of her brain didn't form properly so she has aqueductal stinosis) and based on her size (5 lbs 3oz) and age (35 weeks gestation), the best option is for her to have surgery to insert a shunt which will drain the excess fluid into her abdomen for reabsorption.

The good news is, the surgery is considered "routine". Based on her symptoms the fluid probably started collecting within the last few weeks and thanks to a notoriously meticulous attending, we caught it early. As a result, according to the neurologist, so far her brain is "squished but not damaged". In the best case scenario, the shunt should solve the problem, allow her to develop normally, wouldn't interfere with her trajectory for discharge and could last the rest of her life. Obviously, that's what we are praying for!

Statistically speaking though, the chances of all those things happening are not high. (Here's where we're praying for a miracle!) There is a risk of infection and bleeding with the surgery. Then, 30% of kiddos need additional surgeries in the first year to fix problems with the shunt (malfunction or infection) and most shunt recipients need multiple (5 or 6) surgeries before they turn 18. So it's kinda like saying "we can save your life, but we'll need to cut off your foot." As you can imagine, we're really heartbroken that this is happening to our sweet one.

Yet, even as we were overwhelmed and exhausted and trying to wrap our brains around the reality that this is happening to us...God gave us a wonderful gift...we realized again just how miraculous Ava's life is:

Remember, Ava was born early because of my sub-chorionic hemorrhage and the resulting placental abruption, not anything to do with her health.

If my pregnancy had been normal (oh how we prayed for that!), and I had gone to full term, we wouldn't have detected any problems on her 22wk ultrasound, and she would have been born with hydrocephalus which had been putting pressure on her brain for 6 weeks!!

Instead, because my body "gave out", she's here, otherwise perfectly healthy, and we can give her the surgery she needs before her brain is affected...Amazing.

God sure went to a lot of trouble to get Ava into the world at the right time. How could we not trust Him to care for her every day of her life?

Thanking God for...

2011-07-15T09:20:00.000-07:00

~ Attentive nurses who notice even the most subtle symptoms
~ caffeine. delivered.
~ prayers, emails, texts, connecting our hearts
~ princess tea parties that take precedence over clean dishes and a tidy house
~ pacifiers, special blankets and favorite babysitters to comfort little hearts
~ world class doctors & world class hospitals
~ grandmas only a phone call and a plane flight away
~ grace

Please Pray for Ava

2011-07-14T22:00:00.000-07:00

Today during morning rounds I was told that Ava would get a head ultrasound to investigate the reason for some heart rate drops and a slightly increased head circumference. the attending also mentioned that during her 1 month ultrasound, they'd noted that some ventricles were enlarged, but were still in the range of normal. Sadly, they discovered that the ventricles in question have doubled in size in the past 3 weeks and Ava has moderate hydrocephalus. I had left for the day when the report came back, but Matt was able to be in the room to talk in-depth with the pediatric neurologist (a colleague of his) and then we both spoke with the neurosurgeon this evening. We'll know more after the MRI tomorrow, but it is probable that she will need surgery to have a shunt placed to protect her brain development. That could happen as soon as next week. Praise God that babies skulls aren't fused, so there's room for her brain to expand a bit and this will not have to be an emergency surgery.

Obviously this is very difficult news and we'd appreciate your prayers for Ava's protection and for Matt & I as we process this and need to make some pretty big decisions soon. With all the developments in Elizabeth's health, there's a lot going on here at the moment.

I'll post an update when we know more.
Love,
Sara

2011-07-14T13:07:00.001-07:00

Thank you for your prayers for Elizabeth. We've had follow up appointments this week and are still sorting through her symptoms and praying for discernment. By God's grace, and with a little help from the iPad, her cardiology appointment yesterday went beautifully. For those who are new to the blog, Elizabeth had heart surgery when she was three days old to repair a coarctation of her aorta. She still has mitral valve stenosis and a bicuspid aortic valve, but we can monitor those and now we're just seeing cardiology once a year! Amazing. She still HATES echocardiograms and ultrasounds (two tests that don't hurt! go figure.), but the iPad was distracting enough and after some stress at the beginning she was able to tolerate the rest of the echo. Her follow up with GI left us with some decisions to make and we need wisdom!

The bottom line is, Elizabeth is not very healthy nor is she developmentally "typical". Additionally, she's on eight different medications, and some of them create symptoms that aren't entirely great...sooo, our job at any given point, is to figure out if what we're seeing is medication induced, an indication that her body isn't well (both of which we might mean tinkering with meds or exploring new treatments)...or simply further indicators that her development is "on a different track". Then, if it is behavioral, do we try to modify her behavior?? Or do we accept her where she is and find ways as a family to work around the new stuff. Sigh. Clearly we need prayers!!

In the middle of this, the Lord continues to show me that He created our family. He created each member and us as a unit and He has good plans for us! So my daily task is to live right now, in His grace, and believe He can make this messy life we're living beautiful...and truth be told, it IS beautiful. What appears to us to be broken, frustrating and hopeless...is in reality our calling, our ministry, our life...just how He planned it so we would need Him moment by moment and He could supply everything we need.

But many moments these days, I am impatient and selfish. I want my three year old to act like a 10 year old and I'd like ALL the princesses in our castle to sleep a little more! Aaaaahhhh, I need grace, patience and gentleness with my little ones. We're all in a holding pattern...

Waiting is hard. The in-between is awkward. Longing is painful.

...and yet this too is by God's design! He's not waiting till my life settles down to get involved! He's here, right now, at work, completing the good work He has started. Today, I choose to live like I believe.

I would have despaired, unless I had believed
that I would see the goodness of the Lord
in the land of the living.

Wait for the Lord;
Be strong and let your heart take courage.
Yes, wait for the Lord.

Psalm 27:13-14

2011-07-11T21:48:00.001-07:00

Do you not know?

Have you not heard?

The Lord is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak.

Even youths grow tired and weary,

and young men stumble and fall;

but those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Isaiah 40:28-31

How can I feel so blessed right now?? I'm exhausted. Elizabeth has had insomnia for the last 5 nights, so she's spent hours popping in and out of bed, and on Saturday night managed to knock over a 7 foot high bookshelf. At 10:30pm. Thank God Ruby slept through it. ...but in a way only Elizabeth has, she didn't know what she was doing and can't explain what in the heck is going on! She's finally asleep now, and so I'm headed there myself, but I need to pause quickly to tell you how well we're doing. Don't get me wrong. This is hard. It's complicated. The girls are coping well, but coping nonetheless. Elizabeth is throwing us for a loop right now and requiring lots of creative parenting. Trips to and from the hospital are tiring, and I'm still working around the clock to provide milk for Ava. We are exhausted.

And yet, it is such a joy to have 4 beautiful girls! We are blessed to get love on each other every day. Matt has a good job, doing what he loves, with a flexible enough schedule that he's not completely burnt out right now. (close, but not quite!!) We have lovely gals willing to spend a chunk of the day with our girls to love on them, feed them and help ease this crazy transition so I can be at the hospital a little each day. What mom of 4 gets to sit and hold her littlest one for hours at a time?? We are so blessed. And while we have no idea how we're going to manage the transition of Ava needing more of me at the hospital before she comes home, and then newborn life here at home in the months to come. We know God is not exhausted by our life :), and will make a way. Elizabeth's strange behavior and symptoms remind us that the possibility of a hospitalization is always "out there", but God knows what is in store, and he will make a way. We don't need to know what is ahead, only that God is for us, He is faithful and we are His. So we'll take every drop of grace available for today, and wake up tomorrow trusting there will be more.

Thank you for your prayers and faithful encouragement. We're so blessed to not be walking this road alone.

Photo Shoot ~ 18 Days Old

2011-07-08T19:58:00.001-07:00

This blog has become a bit Ava-centric lately, but with good reason! For such a little bean, she's having quite an impact on our family...kinda reminds me of the Princess and the Pea. Kelly at Relic Photography came to the NICU and took these photos for us. We're absolutely enamored. What a blessing to capture Ava's loveliness even with all the tubes and wires. Thank you Kelly!

Signing "I Love You"

Pure sweetness...

Easy peasy!

2011-07-08T10:31:00.000-07:00

And that's how it's done folks! Isolette to crib in 48 hours. Now I just need to learn to eat!

Look who "Popped her Top"

2011-07-05T10:47:00.000-07:00

This lovely sight greeted me when I walked in this morning! (the lid of her isolette has been taken off) If she keeps her body temperature up for 48 hours, she'll be transferred to a crib! Go Ava!

Eye on the Prize

2011-07-05T06:18:00.000-07:00

These days, we're frequently asked when Ava is coming home. I think many of you might be growing as tired of this craziness as we are!

The short answer is: As soon as she's ready!

To expand on that, in the absence of any complications (an infection, a brain bleed, a failure of one of her systems to develop properly) she can come home when she can do three things.

1. Maintain her body temperature without the help of her warm and cozy isolette. We're not quite there, but getting close...maybe in the next week or two.

2. Eat by mouth, what she needs to grow, and gain an average of 30 grams day. In reverse order, check, check, not yet. She's growing fabulously...she now weighs 4lbs 3 oz! She's taking her goal volume and not having any trouble with throwing up (what?? A Harms baby that doesn't throw up everything she eats?? Incredible!) But she isn't eating anything by mouth...yet...just NG tube. But she's showing signs of readiness for breast feeding and has even managed (five days in a row) to latch and coordinate a suck for 30 seconds or so, all while keeping her heart rate from dropping. What a rock star! We'll follow her cues and hopefully move into oral feeding in the coming weeks.

3. Keep her sats (heart rate, oxygenation and respiratory rate) stable without help. Check. She's been doing that for weeks now. The next step is to keep her sats up while she's eating (that whole "suck-swallow-breathe" thing is mighty tricky!) and the final test will be in her car seat or 30 minutes.

The bottom line is, Ava is doing brilliantly. She's absolutely perfect according to her doctors (and her adoring parents!) and in utero, a baby of her gestational age doesn't need to have these skills, so it's truly just a matter of waiting until her development kicks in and she's ready to do each of these things on her own. Usually that happens on or around a baby's due date (August 15) and can sometimes happen a bit earlier. So it's just a matter of time, and if she keeps up this pace, she'll be leaving the NICU and joining her sisters at home before we know it.

A Ray of Sunshine

2011-07-04T04:48:00.000-07:00

So many times over the last 5 1/2 weeks, I've remarked that Ava's journey has been a strange kind of deja vu. So many moments have felt exactly like the hard things we faced during Elizabeth's ICU stay, and yet the difference has been, Ava is perfectly healthy...just small. So while I have felt the same sorrow over leaving her alone at the hospital each day, this time around, my little one is not in pain. And I don't have the same gut level fear of what lies ahead for her...both because she doesn't have a scary diagnosis and because I've seen what our God has brought us through already, and it feels like we're miles ahead of where we started from last time around.

Back when Elizabeth was in the throws of complications and seemingly endless bumps in the road, we mused that it sure would be nice if for once, Elizabeth could avoid a complication, and we could give God the glory for his protection and favor. To be perfectly honest, sometimes we still feel that way regarding our sweet E-joy. And now we've found ourselves precisely in that position with Ava.

So far Ava has avoided EVERY health complication known to preemies. Every. Single. One. She'll be 6 weeks old tomorrow (she would have been 34 weeks gestation on Thursday). She's up to 4 lbs. 1 oz., eating an ounce at every feed, starting to hold her body temperature more reliably and keeping all of her "sats" stable! There really isn't anything on which she could improve. Every day on rounds they refer to her as "the perfect baby" and when I came in to see Ava on Wednesday, her nurse said, "You know your daughter is a ray of sunshine, don't you???" I do.

What a difference. What a miracle. What a kind and merciful God we have.

So we are living in that tension. It's super complicated to have a baby in the NICU, but it would be so much more difficult if Ava weren't doing so well. I don't love pumping, but it's pretty darn efficient, and I have every reason to believe Ava will nurse someday...and it'll probably be sooner than later since she's already demonstrating her readiness! We're pretty darn tired, but what parent of four kids isn't tired?!

The same song we sang in the dessert, we sing from the mountaintops...God is faithful. He is daily providing for us and showing us favor...all for His glory.

At the same time, the rest of the family is doing pretty well...one day at a time.

Hannah Mae is finally really walking, she's still super easy going and if anything is wrong, (teething, tummy ache, just feeling off) she still let's us know by simply throwing up. Silly girl. She has been so flexible trough this roller coaster of multiple caregivers. I know she misses me and I feel guilty about missing out on so much of her life while on bed rest and now at the hospital...there is no way around it since she's too young to be allowed up in the NICU and we pray regularly that God will protect her heart when she doesn't understand my absence.

Ruby's growing up, asking a zillion questions a day (where are my lungs? What's a uvula? And two days ago to our babysitter: "I'm bored, and I don't even know what bored is!") when I take the time to incorporate her she's quite helpful and responsible and already demonstrates such a sensitive and protective heart toward her sisters. I'm so thankful for her. She is the one who bursts into tears every time I leave and needs lots of snuggles, hugs and kisses before and after the transition. Pray for discernment for us as we parent her sensitive heart. She's so bright and mature, I often forget she's only three and sometimes just needs her mama.

Elizabeth is doing well health-wise, but her behavior continues to reflect the chaos of this season. She spends most of her time in her own world and need real wisdom to know how to best structure her days so we can better engage her and she has better rhythms and routines...even while things change day to day. When she's not having difficulties, She is mostly cheerful and affectionate and is pretty calm about my departure every day. She's clearly had the most "coping practice" and I'm sad to have to draw on that experience, but grateful she's so understanding. She's reading lots of words now and continues to amaze us with her sharp memory.

Matt and I are doing as well as possible under the circumstances. We enjoyed a wonderful visit from the Harms family a few weeks ago and though we were torn about where to be when, we were so thankful for some special family moments and that Grandma & Grandpa and all the aunties and uncles got to meet Ava for the first time. Now we're back on our own and juggling family life, work and the NICU and managing to see one another quite a bit, even if it's mostly in transition times when one of us is coming or going. We spent some good days as a family this weekend and I've spent evenings with Ava. Aside from feeling guilty for enjoying life while Ava isn't with us, it's been nice to have moments of normal these past few days.

Thanks to some amazingly generous friends, we've been able to hire folks to help us keep all the balls in the air so I can be in the NICU and Matt can work. Thanks so much for all your emails, calls, texts and practical help...care packages, activities for the girls, gift cards & meals. I've said a million times we wouldn't be surviving without our strong base of support.

I'm snuggling with the little bean now, so I'm going to go focus...she's kinda like a happy drug. :)

Love,

Sara