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!

Three, two, one...

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

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

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

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

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

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

--
www.msharms.blogspot.com

The Countdown Begins

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

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

Wireless Wonder

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

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

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

Goodnight,
Sara

Ava's Big Day

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

 

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

 

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

 

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

 

We would all appreciate your prayers for:

~Ava's brain

~Ava's nursing and good weight gain

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

~Efficient & effective study time for Matt

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

 

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

Love,

Sara

Sent from my iPad

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

I'm sad.

I'm tired.

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

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

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

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

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

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

Help has Arrived!

Ava's MRI Results

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

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

He has not changed.

He is good.

We can trust Him.

May God get glory from even this.

38 Weeks

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

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

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

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

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

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

Big girl!

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

How are you doing it???

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