Newborn Screen

Well, Eben is going to give us a little bit of chasing. We got a call from the MN Department of Health yesterday morning, followed up by a call from our clinic asking us to bring Eben in as soon as we were able. So, after finishing nursing, he and I drove over, not having any idea what we were looking for.

We are cautiously optimistic that we're looking at a false positive test result for galactosemia.

Eben, upon examination by the doctor at the clinic (who openly stated that he's never in his career seen a child with galactosemia, so had earlier in the day spent 20 minutes on the phone with a specialist at the U of MN, but does know how to look for liver symptoms, which would be the first clinically noticeable signs) appeared to pass with flying colors. Still, he wanted Eben to have blood work done to check his liver function beyond just visual symptoms. A diagnosis of galactosemia would require a lifetime of eating a lactose free diet, starting with eliminating breast milk immediately and switching to a soy formula.

I have never had to bottle feed any of my children. I don't know how to do it!! (But could learn.)

Our clinic doesn't do venous blood draws on little kids, much less 8 day old newborns, so Eben and I made a trip downtown to the hospital. We got a fantastically experienced young woman who got the right spot on the first try, and there was very little crying on either Eben or Mom's part.

Waiting in the lobby to get called back to the lab.

Our doctor was reassured enough by Eben's looks that he told me we could consider nursing through that night to wait for the results, because Eben should have already been showing signs of issues if he was truly dealing with galactosemia. We did so, and his lab results Friday morning confirmed that there are no current issues with his liver, but we still get to have a visit at the U of MN clinic this morning to look further into the question of *why* the reading was so low in the first place. I'm hoping that they simply re-run that part of the screening test and just get a clean result, but in the meantime, we wait to see what we find out.

And, because they grow SO FAST in these early days, here's a more current picture of Eben this morning with Rinnah - he'll be 12 days old today!

and now, with a name!

Ebenezer Scott Glewwe (Eb or Eben for short)

"Then Samuel took a stone and set it up between Mizpah and Shen and called its name Ebenezer; for he said, "Till now the LORD has helped us." " 1 Samuel 7:12

Baby Glewwe

[copied from the email announcement we sent this evening to family and friends]

He's here! I told him he could come any day in July except the 19th, so he arrived on the 18th, 7 minutes before midnight.😉 Matt and I are close on his first name, but want some time alone to talk, so we'll send another email when that's settled. His middle name is Scott, after my dad.

He's our biggest, at 9lb,10oz, but was also definitely my easiest labor. We are so happy he's here.

Group selfie

Today we got to go to Como Town (small amusement park rides) for free through Hope Kids. Enjoy below the excitement of family photographs of a larger-than-average family. I was emailing with my mom earlier this week about how much she likes our photo from Easter because of all of the unique little details it captures in each of us. My theory is that with a smaller family you can take enough shots that one of them is bound to turn out beautifully; with a larger family, you don't get any "picture perfect" shots, but you do get plenty of personality.

I think this one is my favorite...

Some more on the bathroom

The progress has been slower lately, largely because Matt has more to do than just build bathroom all day long! The week that Mira was in the hospital, not much happened. The week after was pretty slow, too, because Matt's got to keep up with his real business work as well. Just because one is self-employed doesn't mean there are no deadlines!

BUT, in between all of that, this is what we've seen since the last post I wrote about the bathroom:

Interior blocking installed, so he's back on the outside putting in the last screws on the plywood sheathing.

Waterproofing - I remember how very nasty this job was when Matt and I did it on the big addition! This time around went a LOT better, largely because the bathroom is much smaller, the footings are different, so there's no cutting and forming of the sticky sheet-good material, AND with only a crawl space and not a full height basement, each piece is much shorter and easier to handle. Still, I was not quite qualified as a helper (hard to reach the wall past my belly!), so Matt gratefully recruited his second cousin, Sam (also our two-doors-down neighbor - she's not working this summer as she's in between jobs and school and moving for graduate school, so she's got time that she can give) and they got the job done in just a few hours. Going around this pipe was really the only challenge...and not much of one at that!

After the waterproofing, the rigid insulation (blue) could go on. Matt got it started down at the bottom so that with the next rains (and we've had some doozies!) it didn't matter if the mud slid into the hole a bit. The ledger boards for the future deck were too big for him to install, and since Owen was at camp this week, Sam was back again to help hold things.

The rest of the blue rigid went on rapidly after that was done. Sam got the job of holding things from the roof side of things, where we have a constant 1.5" deep pool of standing water as we still wait on the actual roof installation. For the record, there are still only four symmetrical, slow drips coming in, despite the standing water, so the temporary roof is doing a fantastic job!

The view from the computer/school room.

The most exciting to me so far is the installation on the windows! Since the last update, the holes have been covered with housewrap; on this past Wednesday, Matt and Sam installed the windows!! Just getting the hole cut in the housewrap made such a difference in the room:

Looking through the existing bathroom window into the addition.

Matt and Sam were able to get the single window in just fine, but were really looking for another set of adult hands to get the double-wide one in. Trouble is they're working on scaffolding from the outside (not great for 39+ weeks pregnant me) and no one thought it was realistic for me to crawl through the existing bathroom window to do the inside work. Enter ROSE! the boys' PCA. We had just loaded everyone up (with her help) into Big Blue for a trip to the library. She drives her own car and meets us there because we stay until her shift with us is over. So, as I drove to the library, and had Leah help me get the wheelchair and Krassi out, Rose climbed into the bathroom, held the window for five minutes, and met us out at the library before we'd hardly had time to notice her absence. She has been such an amazing addition to the way our family works! She takes her time with the boys very seriously and devotedly, but manages to do so in such a way that we all feel the benefit. She includes the little girls, always makes conversation with Bobbi when she's out of her room, and even though she's technically paid to work with one boy at a time, if she's outside with Reuben at his fountain and Krassi wants to go out, too, she will carry him out and give him the moments of direction he needs to play safely and happily as well. We're hoping she will be able to keep working with our family for a good long time!

Here you can see (kind of), the results of their labor at the very top of the photo below - little awning windows opening up (meaning the existing bathroom now has some natural ventilation again, too!

The "real" roof should be here within the next two(?) weeks, and then interior work can begin.

Just so you know she has good days, too.

Every morning we check Mira's sats (oxygen saturations), and Matt thought it would be worth sharing that she has plenty of good days in between her hospital stays. As frequent as those are, Mira's life also has its share of this:

Sleeping peacefully, and that number on the top of the monitor is her saturation (100%) and the lower number is her heart rate (59 - very relaxed little girl). We all like it!

"You're a saint."

It isn't the first time that it's happened, but this time it happened after leaving the YMCA where Bobbi has therapy in the pool once a week. She and Evania (we got an hour of reading books together while we watched Bobbi) and I were walking out when the grandpa-type walking out to the car next to Big Blue commented on my [quite large] belly and making the classic "haven't you figured out yet how that happens???" joke after that. (Particularly after finding out this was going to be our 10th child!)

My comeback was simply that there are multiple ways of having "that" (which I loosely interpreted to mean, "adding children to a family") happen, and we've only had seven through birth and three through adoption.

And that's when I was given the above title: "You're a saint."

That one bothers me every time. On the one hand, yes, it's true, based purely on my status in Christ as a believer, and thus one who has been "made perfect forever*" but according to that definition, I am also one who is still "being made holy.*" And the implication in that comment is that there is something about what I have done that makes me somehow set on a higher level than the others around me. And oh, how that grates, because it is not what I have done that is what matters. (*from Hebrews 10:14) It is rather, what Jesus Christ has done.

My bathroom reading currently is an abridged version of an old book by J.C. Ryle. Here's a portion of what I read a few days after the above encounter:

"Let us never measure our religion by that of others, and think we are doing enough if we have gone beyond our neighbors. That is another snare of the devil. Let us mind our own business. 'What is that to thee?' said our Master on a certain occasion: 'Follow thou me' (John 21:22). Let us follow on, aiming at nothing short of perfection. Let us follow on, making Christ's life and character our only pattern and example. Let us follow on, remembering daily that at our best we are miserable sinners. Let us follow on, and never forget that it signifies nothing whether we are better than others or not. At our very best we are far worse than we ought to be. There will always be room for improvement in us. We shall be debtors to Christ's mercy and grace to the very last. Then let us leave off looking at others and comparing ourselves with others. We shall find enough to do if we look at our own hearts." ~ J.C. Ryle, "Holiness", from chapter 6: Growth

So, what then? The following are passages that continually resonate with me, and in many ways are the continuous undertone that propels me forward and continues to redirect me when my focus starts to drift off course.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. In your struggle against sin you have not yet resisted to the point of shedding your blood. ~ Hebrews 12:1-4

If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God. When Christ who is your life appears, then you also will appear with him in glory. ~ Colossians 3:1-3

 Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus. ~ Philippians 3:12-14

~~~

There's a lot of music around our house. Bobbi's room is a nearly constant stream of music when she's home, and then there's the computer in the school room which is located centrally right off the dining room, and the kids (Owen, Leah, Rinnah, even Evania) have their own playlists that are constantly running. Daddy's office computer either has his music on while he's working, or is used as the stereo system for the living room when he's not. Ever since Matt and the older kids attended a family music festival featuring For King and Country as the final show, we've been hearing a LOT of their music from the central computer, regardless of whose playlist is on!

One of their songs in particular has been resonating with me lately. It's called Fix My Eyes. After beginning the song singing about what they would tell their younger self if given the chance to go back and live life over again, the answer comes in the chorus:

I'd love like I'm not scared

Yes, this is scary

Give when it's not fair

Some care-giving is not greeted with gratitude

Live life for another

She's not afraid to let me know that she needs her mommy-time!

Take time for a brother

Fight for the weak ones

Seizures. What can I say.

Speak out for freedom

Nine years in a crib

Find faith in the battle

Stand tall... 

The suggestion that I'm stupid ("don't you know how that happens?") is still hard to take...

...but above it all

Fix my eyes on you 

And in their own commentary about the song, they make a point about how it all hinges on that last line and a half - all of the stuff that a person may do is nothing in comparison to the need to live life with your eyes on Jesus. When the doing becomes the focus, it loses all of its value. When Jesus is the focus, the doing follows. Also from the song:

It takes a soldier who knows his orders 

to walk the walk I'm supposed to walk.

My walk is not your walk. My walk today is not my walk yesterday, nor tomorrow. I will tell my kids to look at me when I'm giving them directions. If I'm not living every day looking at Jesus, my "commanding officer," I'm not going to know what he wants me to do, where he wants me to go. 

I can wear the "saint" badge not because of the things I've done in my life, but rather (and let's bring in another song, this one from my childhood) because I belong to Him. And when the things that I do are coming from fixing my eyes on him and following him, and not from myself, then they matter.

I see no stain upon you
Because you are My child and you know me
To me you're only holy
Nothing that you've done remains
Only what you do in Me

Pretty hair

Just a week this time

And just like that, she's back again. On antibiotics again (I can't imagine how those have wreaked havoc on her system over the years!)

 Even when there's just one passenger, Big Blue is still the way to go for a Mira pick up, because unlike Krassi and Bobbi's chairs, Mira's does NOT fit into the Jetta.

Check out tiny girl's beautiful hair! The nurses have as much fun playing with her hair as her sisters and I do here at home.

 She's looking really good. When Matt and I were in together on Wednesday to see her and meet with her new palliative care doctor, she did NOT look very good. It's amazing what a difference a few days can make for her. She vomited again this morning, but we're hoping that with her already being on antibiotics that if anything did go back down into her lungs that it will clear up quickly without causing any additional issues.

And if any of you are wondering why we're thinking a real mudroom might be a good idea in the not-so-distant future, here's a photo of how Mira comes into the house:

Notice the basement stairs going down on the left. Notice how she's smack against the storm door on the right. Notice the shoes on the landing. And notice how we still have to get her UP two more steps before she's actually in the kitchen. That's a two-person job. Now imagine what it's like when we're trying to get all 12 of us into the house at once! Yes, that doesn't happen all that often, but nine or ten at a time does.

But regardless, we brought that girl IN through those doors this afternoon, and are hoping she gets to stay here at home for a good chunk of time this time around.