How are you doing it???

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

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

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

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

~Meals from people we don't even know

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

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

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

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

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

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

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

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

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

Baby Steps

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

 

Two Months Old!

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

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

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



--
www.msharms.blogspot.com

Ava Cozy and Comfy

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

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

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

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

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

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

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

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

Extubated and sleeping peacefully!

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

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

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

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

Ava's out of surgery and doing well!

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

Sent from my iPad

Waiting....

Ava's Surgery

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

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

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

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

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

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

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

Love,
Matt & Sara

Our Little Miracle

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

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

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

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

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

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

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

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

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

Thanking God for...

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

Please Pray for Ava

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

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

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

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

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

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

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

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

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

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

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

Psalm 27:13-14

Do you not know?

Have you not heard?

The Lord is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak.

Even youths grow tired and weary,

and young men stumble and fall;

but those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Isaiah 40:28-31

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

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

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

Photo Shoot ~ 18 Days Old

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

Signing "I Love You"

Pure sweetness...

Easy peasy!

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

Look who "Popped her Top"

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

Eye on the Prize

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

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

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

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

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

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

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

A Ray of Sunshine

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Sara