Blog Archive

Monday, October 10, 2011

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.

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