Ben update

In our last installment I mentioned a renewed effort at breastfeeding Ben.  Well, I'm going to declare success!  Breastfeeding doesn't have to be perfect to be successful, right?  I'm more than willing to discuss the details with any of my girlfriends who'd like more info, but basically Ben's getting everything directly from me, no bottles!

yes, he's sleeping again, but I thought this one was cute w/ his tongue sticking out :-)

At his check-up with our pediatrician this morning his weight was not what I hoped, but the Dr. is satisfied.  Ben's still trucking along on the 25th percentile on the DS weight chart, so as long as he doesn't drop his ranking we'll be o.k.  He's messing plenty of diapers and has longer chunks of alert time during the day.  Ben seems content with his food intake so I have to be content with his tininess :-)

So, a big "Thanks" to everyone who encouraged us, prayed, and helped with tips and advice!  I have to say, shortly after bringing Ben home I would have bet against us getting this breastfeeding business worked out.  I'm surprised at how well he's doing at it!  And I actually don't think I would have been all that disappointed if we had to switch to formula.  There are millions of babies who are fed formula and grow up to be healthy, smart, fully functional human beings.  Bottles have benefits too, like being able to leave the baby with a sitter, letting Daddy do some of the feeding work, and mom not having to feel like she's part dairy cow for a year or more!  But I'm so enjoying Ben, settling into more of a "groove," and thankful for God's provision!

Baby Ben is one month old!

Eyes open!

He's still a tiny little guy, but has gained a whole pound since birth - now up to 7lbs 11oz.  This puts him somewhere around the 30th percentile on the Down syndrome growth chart.  He saw the cardiologist today and got a good report.  Just a tiny hole in his heart, but nothing that will cause any symptoms or require treatment.  I'm redoubling our efforts at breastfeeding -- I'd really like to switch him over from the bottles so I can stop using the dreaded pump!  All in all we're doing so well!  So thankful he's a healthy boy and a good sleeper at night.  Can't wait to start seeing smiles from this guy!

Ben at home

Big Sis 'n Ben

I don't feel quite as tired as I look

Paul likes having a little brother

Awake time (not!)

Benjamin Joseph Lowery

Here's how it all went down:

Wednesday morning we dropped off Phillip and Sarah at school then dropped off Ruth, Paul and Mary at our friend Christina Duran's house.  Russell and I got prepped at the hospital and Lila Nevins came to watch all the kids at the Duran's so that Christina could come watch the birth.  I remembered from Ruth's delivery that after she was born she had to go straight to the NICU, so I sent Russell with her and I was left all alone to recover from surgery with no way to know what was going on with the baby!  Same thing happened with Ben, so Christina was able to help keep me company, read me scripture, take pictures immediately after birth and pray with us before we went in.  She also got to share our excitement at that amazing moment of the birth of a new life on this earth.  A miracle - no matter which way a baby is delivered.

So then the hospital stay began.  I began pumping to start my milk supply and by Thursday morning I was up and around and eventually able to walk down to the NICU on my own.  I had an IV in the bend of my arm which made it really difficult to try nursing Ben.  I think my first attempt was Friday morning and he was able to latch on and suck for about 5 minuets.  This was very encouraging.  I tried to make it  down for as many feedings as possible, also trying to pump, eat meals, get my pain meds, and rest a little in between.  My Dr. would have discharged me Friday afternoon, but we didn't think Ben would be released to go home on Friday, so I opted to stay until Saturday.  Meanwhile, Ben was getting his platelets checked - they were 90k at birth, 97k on Thurs. and Friday, and 94k on Sat.  Healthy babies have platelet counts of at least 150k, but 90 was a lot better than Sarah's (under 10) and Ruth's (under 20).  He also got two echo-cardiograms and monitoring for biliruben -- we're following up with his Dr. tomorrow for the jaundice and the cardiologist in a month, but he didn't find anything concerning.

yes, I really looked that good! It had been a LONG night!

Daddy holding Ben in NICU on Friday

On Friday afternoon we got the go-ahead from the pediatric cardiologist and the NICU Dr. to discharge Ben!  However, I was already thinking we would stay until Sat., and I'd been moved to a private room (YES!), and I was appreciating the nurses support and assistance is trying to get Ben to nurse.  I wasn't quite ready to fly solo!

Saturday, Daddy, Ruth and Mary came to take us home.

The kids loved having Ben home!  He's a very sleepy boy and most of the time I have to wake him up to feed him.

***Breastfeeding info -- skip to the pics if you're not interested***  Right now I'm trying to get him to latch on at each feeding.  He's a good rooter and will sometimes latch on, but he doesn't do more than a couple sucks, looses interest, and goes back to sleep!  So then I feed him a bottle of what I've pumped (right now I'm just producing enough to keep up with each feeding).  Then I pump for about 30 min.  The whole process takes about 90 minuets from start to finish, which only leaves me 90 minuets to sleep, shower, eat, etc. until the whole process starts over again!  Exhausting!  So getting him breastfeeding, and quickly, is a huge priority.  I'll be contacting lactation support first thing Monday morning.  Any readers with good ideas here feel free to chime in.  ***ok, breastfeeding discussion over***

We like to name our kids after Biblical heroes of faith - men and women who are remembered for particular demonstrations of God's grace and providence.  We don't know much about the Benjamin of the Bible in this regard however, there is a Ben in our life who has been used by God.  When Russell was first made aware of his salvation the first Christian man he met was Mr. Ben Klafkee.  Ben invited Russell to a men's Bible study, took time to explain the scriptures to him and encouraged him in godliness.  Ben and his wife Trudy also took Russell to church with them every Sunday and had him over for lunch afterwards.  Ben loves God and let it overflow in word and deed in Russell's life.

We chose Joseph as a middle name because of the testimony of scripture in Genesis 50:20 where Joseph declares to his brothers: "you meant evil against me, but God meant it for good."  Many (most?) in the world today see Down syndrome as an evil that should be avoided or destroyed.  But we know that God rules sovereignly over all His creation, works all things for His glory and the good of those who love Him, and is not bound by our earthly views of evil, pain or disability.

Just a few more days!

There hasn't been much to report here, which is good, but as this pregnancy rounds the final turn I thought I should give some updates.

The big news (which may not actually be news to you):  baby is scheduled to arrive Wednesday September 12 at 1:30pm!  Originally my Dr.'s wanted me to wait until 39 weeks (which would be Sept.  15, but my Dr. doesn't work on weekends :-/ so would mean waiting until the 17th or later!), but I had an ultrasound a few weeks ago that showed amniotic fluid levels to be on the low side of normal, so they decided to bump up the delivery a few days.  I'm happy about this for several reasons:

1 - I'm just really physically tired of being pregnant!  Of course, this by itself isn't a good reason to do an early c-section delivery, but I'm happy to avoid another week or two of being pregnant and get going on my recovery.

2 - The longer baby is inside me the greater the chance he could have internal bleeding or another life-threatening event.  Studies are sketchy, but some show 20% chance of losing a Down syndrome baby after diagnosis.  Most of these losses are probably due to babies having heart defects or more complicated chromosomal abnormalities, but it's been somewhat worrisome to have the NAIT diagnosis too. (If you missed what that's all about go back to this post.)

3 - Since I have to have a c-section I'd like to do it when it's scheduled and not in a rushed dash-to-the-hospital-in-the-middle-of-the-night-because-I'm-in-labor kind of way.

4 - only two more IVIG infusions!

I'm not too worried about how this is all going to go down.  I figure it's best not to worry about things that may or may not happen until they happen :-)  And I know God will give me grace to swim in the deep end of His providence.  The bottom is firm and He won't let me drown.  In the interest of full disclosure though I thought I'd list some concerns so you all can know what's on my mind and how to pray.  Most of all, pray that God would adorn the gospel through my thoughts, words, and deeds and glorify Himself through the life of this new immortal soul.  Here are some more temporal concerns:

• That the c-section surgery would go smoothly and my recovery would be quick.

• That baby would have good platelet counts and no other immediate health concerns and be able to come home from the hospital when I do.

• That baby would breastfeed well.  Down syndrome babies can struggle with this due to weak suck, low muscle tone, tongue-trust issues and sleepiness.  However breastfeeding is such a benefit to facial muscle strength, future speech development, and immune system health, not to mention the benefit to ME of not having to deal with pumps and bottles! (I'm lazy!)

Here's a photo from a recent ultrasound.  Who isn't excited to meet this little cutie!?!?!?!

Stay posted for some photos of him on the outside soon!

From God's left hand

Came across this blog post today and I just had to pass it on.  There's a new book coming out I think I have to get:   Disability and the Gospel: How God Uses Our Brokenness to Display His Grace.  But I don't think the book can be any better than Joni's forward. 

Back in the mid-1960s when I first embraced Christ, I would tell people it was all about Jesus, but I had no idea what that meant. Sure, Christianity was centered on Christ, but mainly he was the one who got my spiritual engine started. As long as I filled up on him every morning during my quiet time, I was able to putter along just fine.

Things changed dramatically in 1967 after I crushed my spinal cord in a diving accident that left me a quadriplegic. I was frantic and filled with fear. Oh God, I can’t do this. I can’t live like this! This time I needed the Savior urgently. Every hour. Every minute. Or else I’ll suffocate, God! Suddenly, the Bible with all its insights about suffering and weakness became the supreme thing in my life. I spent hours flipping pages of the Bible with my mouth stick, desperate to understand exactly who God is and what his relationship is to suffering. It didn’t take long to find answers that satisfied. When it came to my life-altering injury, nothing comforted me more than the assurance that God hadn’t taken his hands off the wheel for a nanosecond. I discovered that a right understanding of God’s hand in our hardships was critical to my contentment. I also discovered how important good theology is.


A right understanding of God's hand in our hardships is critical to our contentment.  This is so true.  Good theology allows me to receive the news that my mother has terminal cancer with peace and trust in His good providence.  Good theology allows me to know that a new baby with Down syndrome is for my good and God's glory.  Good theology teaches us that any goodness, joy or beauty is only a foreshadow of things to come for those who belong to Christ.  This world is passing away.  Our hope is not in health, long-life, happiness, wealth, success, nice vacations (yet those are all good things!)  But our hope here:

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more.  And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God.  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Rev. 21:1-4)

Our longing for heaven should be stronger than our deepest desires on earth, be they for healing, joy, comfort or ________(fill in the blank).

More from Joni:

When it comes to suffering, I’m convinced God has more in mind for us than to simply avoid it, give it ibuprofen, divorce it, institutionalize it, or miraculously heal it. But how do we embrace that which God gives from his left hand? I have found a person’s contentment with impairment is directly proportional to the understanding of God and his Word. If a person with a disability is disappointed with God, it can usually be traced to a thin view of the God of the Bible.


This is true not just for the disabled, but for any of us who are disappointed with God's providence.  Good theology teaches us that God is good, God is in control of all things (yes, all things means ALL THINGS) and "the sufferings of this present time are not worth comparing with the glory that is to be revealed to us." (Rom. 8:18)

Giving mothering your full attention

Good thoughts here from Carolyn Mahaney.  She writes:


"We must be watchful that these “other things” don’t distract us from our primary task of mothering. We must walk carefully through this season, with all its opportunities, and make the best use of our time with our children.


By "other things" she means online activities (like facebook and what I'm doing now!) and industrious pursuits in the marketplace (Prov. 31-type commerce).  Mahaney continues:

Truth is, we can’t effectively train our children on the side. We can’t discipline them here and there. We can’t teach when we’ve got a free moment. We can’t mother intermittently.

Inconsistent training is ineffective training.

If we are distracted by projects or pleasure, we may miss valuable teaching moments, opportunities to encourage, disobedience that requires discipline, or a chance to show affection. These moments, once lost, are gone forever.

So ladies, may I encourage you, as I do my own daughters, to give training and discipline your first and full attention. Walk carefully, and keep your eyes on the mothering road."

While she is absolutely right about the importance of the job of mothering I would caution moms to not take this admonition too far.  If we always give "mothering" our first and full attention it'd be easy to justify only having one child!  After all, you're not going to be a very effective mother to your toddler when you're sprawled out on the couch for several months with morning sickness.  It's not easy to stay on top of every discipline opportunity when you must spend 30 minuets (or more!) every 2-3 hours nursing a newborn.  It's impossible to catch every potential moment for training and discipline b/c we have to do other things like take showers, eat lunch, make dinner, do laundry, serve in the church, maybe lock ourselves in our own room for 15 minuets to relax/pray/read/breathe, etc.  Be wise with our time, yes, but God can even use our inconsistent and distracted mothering.  My children benefit from being "neglected:"  learning to play by themselves, working out arguments (even if they often fight), getting bored, and recognizing that the world doesn't revolve around them!  So lets be diligent, but lets also realize that motherhood is a marathon, not a sprint.  We'll get our kids to the finish line only by the grace of God, not our own efforts alone.  Sometimes we might take a slower pace, and sometimes we need to stop for a rest break!

Praise God that He uses imperfect parents!  Praise God that he uses tired, cranky, sick and sore mothers.  Praise God that missed discipline opportunities don't mean we've failed completely.  God, in His sovereignty, can even use our mistakes.  He is doing His own work in our kids.  Yes, He uses us as parents, but He's not limited to only using us.  He uses everything.

I guess I just don't want any moms to read Mahaney's post and feel like they're not doing enough.  Unless they're not.  I wholeheartedly agree that IF God has called you to be a mother, motherhood should be your highest priority.  We should all evaluate how we are spending our time and if it lines up with God's priorities, but it will look different in each of our individual circumstances.