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