58 Seconds of Cute

Life is cruising along here in our busy, cozy and crazy home.  Ben is doing all the normal stuff a two-month-old baby does including smiling and cooing.  You know you want to see that:

I know he's going to have physical and mental delays of some sort, but we haven't seen any yet (other than still taking FOREVER to finish a meal!).  I also enjoy getting all the "oh what a cute baby" comments from people we meet, but in the back of my mind I know they can't tell he has Down syndrome yet.  But they're right, he sure is cute!

Quick Pic...

Sorry for the lack of pictures, etc. - just busy times around here!  But here's a shot of Ben working on smiling at me.  He likes me a lot :-)  I'll try to get some more bloggin' done one of these days...

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!