Oh Yeah

I meant to answer some questions in my last entry.

1. Aubrey's outfit was given to her by my mom. I believe she bought it at this store. I love it, too.

2. Aubrey's eyes are dark, dark blue. They make me think the most of her eye color because they are so intense.

There you have it!

The Randomness

:: I feel today as though we are inching our way back to structure and routine around here.

Not Aubrey, of course. No, she's all over the map and for now I'm just glad she knows that nighttime is for sleeping.

I mean us. Daniel & me. And the kids.

We're figuring out how life with Aubrey works. And how it doesn't. And it feels good just to know a bit more about what to expect (or not expect) in a given day.


:: My milk supply is back to where it needs to be for now and I am also armed with a No-Fail plan for whenever it needs to go up even more. Lactation consultants are wonderful people.


:: Aubrey weighed in today at 8lbs even. (She's also 21" long and her head is 13.5", for those who are into details. The weight is the all-important stat.) This is a 4oz gain in the last 8 days, and since 1/2 an ounce to 1 ounce a day is the typical newborn growth rate, I am pleased. She's still below the 5th percentile, but we're making progress.


:: I am feeling really and truly good today. If I walk too much-- like I sometimes do with my fussy baby in the evening hours-- my incision still feels painful, but otherwise I can honestly say I feel like my normal self. (Well, besides the ridiculous exhaustion resulting from being awake for 45-60 minutes of every 2-3 hours each night.)

My heart is more sure today. It seems that in these past 6+ weeks, every low point has been followed by an even stronger confidence in His nearness and goodness as He tenderly watches over me and shows Himself able on my behalf.

And the only moment all day long when I thought I would scream was when I arrived home from the lab (blood draws for Aubrey & I) and I received my first ever jury summons. Like this is what I need right now!


:: My menu for the week is planned and I did the appropriate grocery shopping today. I planned lots of very simple foods (quesadillas and chicken pot pie and the like) and I'm still not sure if execution will take place each day, but I've got a plan anyway. My one lofty ambition in the kitchen is to peel, slice & freeze the bags of Cortland apples sitting in my laundry room. We'll see how I do.


:: I have two sisters who have made these past few weeks work. I don't know what I would do without them. One of them has come over every night Daniel has been out to help me with getting the kids to bed.

Yes, I feel spoiled.

And I feel more certain than ever that family is truly a God design, because only He could think of something so wonderful.


:: Today my favorite verse is Isaiah 32:17.

The work of righteousness will be peace,
And the effect of righteousness,
quietness and assurance forever.

Peace For Me

I read this today, and I cried.

Peace is a Person, available always and everywhere to me.

My Cuties

Gabriel displaying his newly homemade St@r W@rs action figures:


(notice the blue & red light sabers)


Bronwyn as a bride:


(her ambitions right now are to one day be a bride and a mama)


A classic Jackson expression:


(I can't ever decide if he looks more frightened or shell-shocked when he does this)


A couple Aubrey expressions:

    




Oh! how I love these little ones!

In the Midst

Today is peaceful.

Aubrey ate well at 11am and has been asleep since. I will wake her in a few minutes to eat again. This is a much better scenario than when she doesn't sleep or eat well and fusses for hours on end.

All four children (did I really write four? 'Cause I still can't believe that I have four kids!) and I went outside for 30 minutes or so after lunch. Mealtime had run late and being outdoors also meant naptime would run late, but such a diversion was simply too irrisistable: the sky is idyllically blue, the leaves are crunchy, and the sun is warm. And being outside as three little people scampered about, laughing and running and exploring, and the fourth slept calmly and soundly, I felt the peace of normalcy wash over me.

I'm afraid this week I have grown dangerously myopic in my outlook. A beautiful landscape, enjoyable playtime, and smiling faces have reminded me that life is not all doctors & hospitals, medicine, breast pumps, and battling fear, though my pessimism would like me to believe so.

Yes, today, I am reminded in a thousand little ways of God's goodness. He doesn't just bring us through difficult times; He meets us right where we are and brings beauty in the midst.

An Update to the Update

My appointment this morning brought more good news. (I'll keep going to the doctor if the reports keep improving as they have this week!)

I have definitely been passing residual tissue, but the doctor is almost sure it's simply the old uterine lining getting kicked out faster than usual by new lining. In his words: "The pumping and dumping vs. breastfeeding you did the first couple weeks probably means your body is getting ready for baby #5." Not sure I'm ready to think about that-- and fortunately I don't have to today-- but at least he's pretty confident it's nothing to worry about.

The swelling, tenderness and bleeding are probably from over-doing. He said he cannot emphasize enough how much even travel and lack of sleep contributes to slower recovery, let alone being on the go since 48 hours post-op as I have been. While my activities haven't actually been harmful, there is a price to pay for each thing I do. In light of this, my guess is that driving our car with standard transmission quite a bit on Monday may have triggered these symptoms, to be honest.

So that's that. Nothing major. Nothing alarming. I'll have my blood count checked since I tend toward anemia, but I would have to have some significantly bad hemoglobin levels before the risks of taking a scalpel to me *shudder* are less than the risks of leaving things as is. I'm fairly certain I'm fine, since I don't feel terribly tired and a quick fingerprick last Friday indicated hemoglobin levels of 11.6.

So, enough of that. Pictures are way more fun.

My pretty big girl:
(She chews her lips these days until actually causing bleeding & scabbing above & below, as you can see)

The Bronwyn stare:


I had money on a gift card for here, so I went ahead and decided to try a swing out for mealtime since she is often not happy when I sit and hold her (not even in the wrap):


Our sleeping 6-week-old lady love:

A Report

We have been to the doctor everyday this week and there is another appointment scheduled for tomorrow morning. I'm hoping we'll get the weekend off, though at least the reports at each appointment have been getting better and better as we go.

Aubrey saw one of the cardiologists in Syracuse today and passed her exam with flying colors. He commented several times on how good she looks. Her color and alertness are excellent and her EKG results were normal. The medications she's on are working well and he isn't changing a thing for now. The only improvement he could recommend is more growth-- in his words, "she's a little pokey"-- though he certainly isn't alarmed by the fact that she's just now reached 7lbs 14oz (I assume this is because he deals with cardiac patients everyday and is accustomed to slower growth patterns).

The cardiologist also told us that he, the other three cardiologists, and the pediatric cardiology surgeon "conferenced" about Aubrey recently. This involved discussing her heart and possible surgical procedures to correct it. Bottom line: they aren't sure what they want to do. Better bottom line: they don't have to know right now because she's stable and healthy. They'll see her in a month and if she's grown better than this past month, they'll consider spacing out her appointments even more.

God is watching out for Aubrey and we are still praying for a miracle for her.

Things on my front aren't looking quite so peachy, unfortunately, but I'm hopeful that we'll discover nothing major tomorrow morning when I see the doctor who performed the section (my doctor is a family doctor so she wouldn't have done the section even if she'd been in town). I've passed a good deal of tissue lately, my lower abdomen is increasingly tender and swollen, and my incision has been "burning" quite a bit. A sonogram yesterday didn't show any remnants of the placenta or anything, so I may find out that it's as simple as me overdoing things. I don't know how that's possible since I feel like I'm doing nothing, but one never knows.

What I do know is that I think the original design for getting babies out is far better than the emergency design. I'm glad to have made (and be making) this sacrifice for my beautiful little girl's well-being, but nothing besides my child's life on the line could induce me to go through this again.

This from a mom who has had 2 multi-day labors and 12 stitches after her first baby was born. Trust me, it's still better.

In addition, I'm having milk supply issues because of Aubrey's poor nursing habits. This is stressful for me, which doesn't help. The pump is in action full-time around here; I'm hoping for a turn-around on this front in the next couple days.

All in all, we are moving forward and finding grace for every season. The Word of God is becoming more and more precious to me as I find that the fears, emotions, and stresses of this season are much bigger than me but not bigger than His promises. My heart soars and crashes more times in a day than I can even count and still He is steadfast and immovable.

The Anchor holds.

Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.  --Matthew 11:28-29

Hear my cry, O God; Give heed to my prayer. From the end of the earth I call to You when my heart is faint; Lead me to the rock that is higher than I. For You have been a refuge for me, A tower of strength against the enemy. Let me dwell in Your tent forever; Let me take refuge in the shelter of Your wings.  --Psalm 61:1-4

Pictures

We're off to my postpartum appointment and to get Aubrey's shot.

It's been another decent morning around here, though I've got three very tired and kind of miserable bigger kids. I'll take pictures of them when they're not crying. For now, you get some more snapshots of the happier member of our family:

I've Been...

...rescued.





Aubrey has slept all morning.
I've cleaned the kitchen, fed the other children, picked up the family room, and folded laundry.

What I was sure was going to be another Hang On Until Daniel Gets Home From Church morning has turned out to be extremely peaceful and productive.

And I've held my baby close the entire time.
It doesn't get much better than that.


Thanks again and again and again, Sarah.

Random

I just was thinking...

What kind of kid wants to be an exterminator when he grows up?




Edit: Gabriel does not want to be an exterminator. And that's good; he would make a terrible exterminator, seeing as how ladybugs freak him out. This really was just a random thought that crossed my mind.

5 Weeks

Gabriel was watching me change Aubrey's diaper, both of us gushing about how cute and tiny and wonderful she is, when he sighed a somewhat sad sigh.

"What is it, Gabriel?"

"Well," he sighed again, "don't you just wish she would stay a baby forever?"

Yeah... I kind of do.



Gabriel also wants to know why all babies have red hair.

I told him not all do-- just the ones born in northern NY.

Sleepy girl


A little blurry, but she's still cute!


Eyes wide open

Our Days

Yesterday afternoon four friends arrived at my doorstep, bearing a loaf of freshly baked bread and the basket full of ironing they had picked up from my house earlier that day. If that wasn't kindness enough, they came ready to tackle a work list-- and tackle they did.

Bathrooms scrubbed
Windows Windex'd
Registers vacuumed out
Front porch swept down
Family room furniture rearranged
Shelves hung
Lawn mowed
Refrigerator & microwave cleaned
Bedrooms dusted & vacuumed
Light switches & doornobs sanitized

What would have taken Daniel and I weeks-- literally, since we have to take turns watching the kids while working on the house-- was done in several hours. And as I sat in my newly-arranged family room last night, I breathed a deep sigh. The kind of sigh that knows my jobs are "caught up" and that they are no hanging over my head.

Other happenings of October 16th? The wonderful news of a baby boy's arrival came first thing! Daniel took the kids to the library, which is one of their favorite errands. We dined on scrumptious leftovers from meals I didn't cook. The Indians beat the Red S0x... again.

Today I talked with a good friend for the first time in far too long. I don't know why, but somehow I always lose my I'm Not A Phone Person identity when it comes to her, so that our phone conversations could last for hours (and often do!) if we let them.

I brought Aubrey to the doctor this afternoon. The visit was originally supposed to be for her first dose of this, but because of a bad case of Goopy Eye that developed overnight and was diagnosed today as conjunctivitis, the shot has been temporarily postponed and we picked up a prescription for eye drops immediately following our appointment instead.

Aubrey weighed in at 7lbs, 12oz today and I am pleased that she's continuing to gain, albeit at a somewhat slow pace. By next week's appointment with the cardiologists, I expect to find out that she's finally passed her birth weight.

Tomorrow I have every intention of taking a nap. The few I've gotten since Aubrey's birth simply haven't been enough to combat the slow process of recovery from a major operation. We'll see how I do.

Tizzies

Under orders to not let Aubrey get too worked up, Daniel and I faithfully attend to our baby's faintest cries. Aubrey, being a very smart 1-month-old, has figured out that crying is her ticket to my arms and is now taking full advantage. For the most part, I gladly comply; the birth and growth of three children before her is slowly but surely teaching me how fleeting these days are and that no amount of "spoiling" will mean she won't move on from this constant need for me in time.

However, I have other children to care for, too. And these children have to be dressed each morning, expect to be fed at least three times a day, fall and have boo-boos that need my attention, misbehave and require discipline, and more. I am finding that I don't have enough hands for this small brood, at least not when my little bundle thinks her permanent place is with me.

During the brief times when Aubrey is sleeping in her bed or in her carseat (I am not much of a "gadget" person, so I don't own a baby swing or sling, and the vibrating baby seat that rescued me on many occasions when Gabriel, Bronwyn, and Jackson were babies is broken), you can find me frantically doing laundry, washing dishes, making PB&J, brushing my teeth, making my bed, and cleaning bibs that are crusted with food from the last meal (or two). Otherwise, I'm here on the couch or pacing the floor, snuggling my newest snuggler.

And while I'm undoubtedly doing a great job at making sure Aubrey doesn't cry too long and too hard for her little heart to handle, I think I am surely on my way to a tizzy of my own!

(Believe me, another week like this and I will probably be trying every baby gadget ever made!)

Ephesians 6:1-2

She's just too cute!

4 Weeks

It doesn't feel like 4 weeks. I think this is largely because having Aubrey here in the home is fresh and extremely new. We are all very much still adjusting to the schedule (what schedule?!), needs, patterns, and demands of life with a new baby around.

Aubrey is the love of us all, so that even when the pressures of her medical condition start to weigh heavily on my heart and days, there are always quick reminders that she is so worth it.

In the past couple days, Aubrey has been given some very wonderful gifts. Actually, in the past 4 weeks she's been given lots and lots of very wonderful gifts! But these particular gifts, crafted by several friends, beg sharing as they are unique and handmade just for Aubrey.

1. Endless thanks to these two friends, who have prayed without ceasing & worked tirelessly to bless our family throughout this difficult season-- and still found time to make some precious things for our baby doll.




2. And how wonderful is it that the love and support represented in each stitch of this gift arrive today, when tears are near and weariness is setting in on my soul? I am so thankful for dear & true friends who know me, my fears & my weaknesses, and who love me anyway.

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.