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.