MRI results...an update from Matt

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

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.

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

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

Ava's in the ER

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

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

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

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

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.

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!

And we'll sleep in our own beds tonight!

EEG results

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??

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

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

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...

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!

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

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

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

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

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

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

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.

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

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

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!

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

Family Vacation....of sorts

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

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

Long day, heading home.

New digs!

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

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

Discharged

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

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

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

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

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

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!

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...

...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.

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

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...

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

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...

Beautiful Blue Eyes

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!

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

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

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

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

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

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

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!

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

Ava is home.

Goodnight!

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