Doctors, Meds, and Hope

Aubrey saw our local doctor today for the first time. She is doing well, overall, and we made further plans for her care. In addition to the visits to Syracuse to see the cardiologists, Aubrey will see our doctor about once a month to monitor growth.

Last week, Aubrey left the NICU weighing 3375g (or 7lbs, 7.05oz). Today she weighed 7lbs, 10oz and measured 19.5" (I think she's actually longer than this since I measured her at 20.5" last Thursday-- maybe we'll just go with 20"!). She has long, delicate fingers and her legs are scrawny; I think the 3oz gain that I am so proud of went right to her cheeks and nowhere else! Her little head is 1.5" smaller at 4 weeks old than Bronwyn's was at birth, so that the only hat in our possession that remotely fits her is the pink crocheted one the nurses put on her immediately after delivery. For the first time with any baby, I actually bought a second package of newborn-sized diapers.

But she is growing (better now than in the NICU), and I am so happy. I spend a lot of time nursing her and am coming to terms with the fact that she also seems to need 2-3 bottles (50ml of breastmilk each) a day in order to get full; when it comes to breastfeeding, she tires before having eaten all that she needs to sleep well. Hopefully we will slowly but surely be able to wean her from those "top off" bottles, but for now I am simply glad she is content and that the scale is showing growth.

Very soon, Aubrey will get her first dose of medicine to help prevent RSV. She will get this once a month throughout the winter months.

On the 24th, we will make our first return trip for an appointment with the cardiologists. We're still not sure how frequently they will want to see Aubrey and what kinds of testing they will want to do in the coming months. I anticipate finding out more at the appointment.

Aubrey is on 2 different medications right now: one for the atrial fibrillation (racing heart) and a second to prevent fluid build-up that is caused by heart disease. I administer both of these orally once a day. In addition, she gets an iron and vitamin supplement that I mix with some breastmilk in a bottle, also once a day.

I am thankful for attentive doctors and effective medications. But when I've done my research, asked lots of questions, and heard the pros and cons, I realize again that my hope and expectation must be in God alone. And, actually, that's the best place for it. He has faithfully kept Aubrey even when many medical professionals said she probably wouldn't live and even before that! We will continue to wash our hands lots, track medications, and keep appointments, but when all is said and done, our hearts will rest in Him and His power.

Psalm 34:17-20 The righteous cry, and the Lord hears And delivers them out of all their troubles. The Lord is near to the brokenhearted And saves those who are crushed in spirit. Many are the afflictions of the righteous, But the Lord delivers him out of them all. He keeps all his bones, Not one of them is broken. [emphasis mine]

Four

:: Last night, our little family sat down at our new dining table to share dinner together. It was a cozy (what wonders a single lit candle can do!) and very busy meal.

Really and incredibly busy.

Gabriel and Bronwyn kept reciting movie lines back and forth. I know I was only gone for 3 weeks, but I don't remember them being old enough to entertain one another quite so much or quite so loudly. Jackson and Gabriel warred for the Who Can Get In Trouble The Most For Drumming With Their Utensils title. I balanced a somewhat fussy Aubrey in one arm while eating stew with my free hand. Daniel cut potatoes and beef and buttered biscuits between bites of his own meal.

The noise heightened and heightened. It seemed the more Daniel and I worked to create peace and quiet, the funnier Gabriel thought himself, the louder Bronwyn's singing became, the more displeased with his dinner Jack was, and the intenser Aubrey's squawking grew.

You know what they say, right?

If you can't beat 'em, join 'em.

And that's just what we did!

:: I know from firsthand experience that every time a baby's born, the up-until-then-youngest-child ages instantaneously, but I still can't get over how old Jackson is now. Do you know that he runs around the house trying to imitate Gabriel's light saber fights and Spiderman moves? And would you believe me if I told you that this child who only issues a handful of words in an entire day makes action figures "talk" to each other?

The other night, Uncle Merrick and Cousin Jameson were over. Jackson was very disinterested in anything Jameson was doing and rather clearly communicated to all of us that he is much more in league with Gabriel and Merrick than with the cousin who is only 8 months younger than him.

So very mature, you know.

:: On Sunday morning, Bronwyn cried and cried in protest of the nursery for the first time in her life. She wanted only to be with us and we could not resist her pleas, so in she came to the sanctuary to sit with Mom and Dad (and Jackson, who often sleeps on our laps rather than playing in the nursery). By the end of the sermon, our little sanguine was tipping her head upside down and trying to look at people behind her from underneath her chair. Her hair barrettes had long since come undone (about 20 times) and her curls hung in a matted, knotted mess. She was pouting after being denied the plate of communion crackers despite her attempts at convincing us that she needed some "be'tause I'm huuu-ngry!"

Daniel and I were both wondering who got all soft and decided to let her sit through the sermon in the first place!

:: I am exhausted, in part due to the waking with Aubrey during the night, but mostly because my body is having to calibrate itself to the demands of four children when I'm used to three. The physical and emotional requirements of parenting have me absolutely reeling!

But even when I'm sure I can't handle one more straw, I'm even more sure I can't imagine life without the ups and downs that each one of my children represents. I love that I get to be their mom. They truly are wonderful gifts, straight from a loving and generous Father.

Redemption

With each scrub of the floor, cupboards, and chairs of my kitchen, the sense of normalcy increases. With each story book read, diaper changed, and bathroom sink cleaned, I feel less and less in a daze. With each load of laundry that gets pumped through my beloved frontload washer & dryer-- blue jeans and plaid bedsheets and tiny pink socks-- there is a calm that washes over me.

Yet not entirely.

Not like before.

My heart aches and groans for His redemption here on earth. The brokenness of humanity and the sting of sin is freshly real to me, and now I am all the more desperate for the touch of the only One who can make it right.

I believe with my whole heart that God's will is to heal and redeem Aubrey's life. He has already shown Himself faithful to this promise. My resolute confidence is that one day the little heart that is swollen and confused will no longer beat visibly with every heave of her chest... that she will run and dance and shout and play... that her life will for many, many years be a testimony and encouragement to others.

But the core of who I am has been changed as I walk this out. Eternity has been printed on my heart in a new and deeper way.

The path I am on isn't easy. I didn't ask for or want this. I confess that there have been moments when I have cried out to God that this not be my portion or Aubrey's.

And yet I cannot deny the precious work of the Holy Spirit in the midst of this trial. The Lord is healing my daughter-- and He is changing me as I watch, experience, and await His redemption.

6 Years

Really?

Already?

Only?

They've been amazing years.

And today we are celebrating by being home with our children.

I wouldn't trade our plans of just being for anything else in the world.

After all, I realize more and more each day how much I really do like just being with him.

Loved

Aubrey was greeted in the driveway with much excitement yesterday evening when we arrived home. Her big brothers and sister are pretty enamored with her and the challenge with them is to not squelch their awe and interest in issuing instructions like, "You need to go wash your hands before you come near her," and, "Don't sneeze near the baby."

I didn't get much sleep last night, but that's OK. I'm so glad to be here and even more glad to be the one changing diapers and nursing Aubrey in the wee hours-- though such activities did take place far more times than I'd anticipated! In the way of confession, I must admit that not all the sleep deprivation can be blamed on anyone but myself, as I woke at least once an hour even when Aubrey was asleep to make sure she was warm/cool enough, breathing gently, and contented. I even woke at tmes just to look at her and to savor the fact that she was
sleeping right there next to my bed in the same basket each of my
children have slept in as infants.

Honestly, one might think this is my first baby all over again!

And when Bronwyn and Jackson stumbled downstairs at 5:30am, eyes barely open, Aubrey and I were sitting on the couch together to greet them. There were early morning snuggles and this mama got lots and lots of kisses. Unpacked suitcases, piles of paperwork, apprehension about the future, and concerns about tomorrow all faded into the background as I reveled in the simple moments I have so missed.

So, yes, today I am rather tired, but mostly I am feeling very loved by a God who has been endlessly gracious toward me.

3 Weeks Old And

right where she belongs...







God is so good to us.

October 1st

I can hardly believe a half a month has disappeared. Unbelievable.

Aubrey continues to do well. On Saturday night she weighed in at 7lbs 8.6oz. The nurses tell us that's normal considering the fact that her IV was completely weaned 2 days ago (she still has it in for another day to make sure she's eating lots before they pull it) but she just yesterday evening started getting enough breastmilk to maintain her weight (44cc). Every shift they up her feeding by 3cc, so she should start gaining weight more quickly now.

As Aubrey gets better at taking a bottle, she's also getting somewhat frustrated by the extra effort and work breastfeeding requires. It means that feedings are a bit of a fussier and lengthier process (close to an hour), but I'm blessed to have been surrounded by nurses who are as committed to Aubrey breastfeeding as I am. The cardiologists don't want to send Aubrey home until they are confident that she is doing well with breastfeeding, so there has been talk about me spending the night here at the NICU soon so I can do 'round the clock feedings.

There is still no "go home" date and we still aren't sure what the plan after discharge will be. We know that there will be frequent trips back here for check-ups and testing, but we don't know how frequent. We know that the surgery is planned for within Aubrey's first 6 months and that one cardiologist mentioned possibly wanting to operate before the winter months set in, but don't know what exactly that means. We know that we will have to guard Aubrey against sickness of any kind, but we don't know just how serious the common cold could be for her.

We do know that our God is a God of miracles. The fact that Aubrey's respiratory rate has come down to 60-80 breaths a minute without any intervention by doctors is the work of the Lord. The fact that Aubrey's body oxygenation/saturation levels are always 85-100% is amazing to everyone who sees or hears about her and is a testimony to God's keeping power. And so we continue to pray that the Lord will touch her and right every part of her that is confused and mixed up.

And we pray that her miracle will cause even doctors and nurses to acknowledge the grace of God.