Eden Evangeline

I honestly don't think I've logged into this account since my last post which was well over a year ago. In the time since then, Luke is another year older, the twins are inching towards their 5th birthday, we lost one baby via miscarriage last summer, and another baby was born to us just a little over a week ago. 

And that's why I'm logging back in, to begin chronicling the latest journey the Lord has us on. Just as a little review, at my 20 week ultrasound for our daughter, Eden, we found out that she was missing her corpus callosum (the portion of the brain that connects the two hemispheres). The ultrasound was a routine check-up, mainly to see if I was at risk for a pre-term delivery because of having Luke a month early. They spent about an hour examining her brain under ultrasound before calling us back to talk with one of the specialists that work in maternal fetal medicine. He then reviewed the findings, told us about the agenesis of the corpus callosum, recommended that we begin pursuing further testing or consider terminating the pregnancy, which was never, never an option. 

After talking about it with another doctor and praying about it between the two of us, Don and I decided to not pursue any further testing and to just entrust our baby and the pregnancy to God. We knew that there was a high likelihood of the baby having special needs, but the actual diagnosis and prognosis had a wide range of possibilities so we chose to spend the rest of the pregnancy praying for her healing and hoping for the best. I know many of you were praying with us- thank you!

Fast forward to my 34 week ultrasound (just another routine check up) and the baby's head was measuring small, another indicator that all was not well and that there were likely going to be some complications. Again, we entrusted our daughter to the Lord and prayed for the best.

Even though we thought our little Eden Evangeline was going to come early, she was almost a week late (arriving Wednesday, June 29 at 4:38pm). The delivery was smooth, and truthfully I was so ready to be done. I cried moments before she was born because I was just so relieved to be done with the pregnancy, not because of the pregnancy itself, but because of the uncertainty we had lived with over the past 5 months. I just wanted to move on, figure everything out, and move forward. 

The first 24 hours were a bit of a dream, and I'm thankful for them. The NICU staff evaluated Eden right away, and she looked great! Her head was measuring small but all other vitals were perfect, so I was able to hold her right away, to begin trying to nurse her, and we were able to have her in the room with us at the hospital. The next day our boys visited us and they were all able to hold her. In that first day, many of our prayers had seemed to be answered: she was nursing well (it seemed), we were planning to take her home with us, and all of her vitals were on track. 

The next day, the pediatrician visited and noted that her head was small, but additionally that it seemed as though her soft spot had already closed. This was concerning, but I still held out a little hope that maybe we could fix that. An MRI was ordered to get a better look at her brain and then we would know more. That night around 10pm, our pediatrician called us to tell us that she had reviewed the MRI with the neonatologist on staff at the hospital and that he would be coming to our room shortly to go over the results. 

The rest is kind of a blur, but basically he told us that Eden has severe microcephaly and that there is a lot of malformation within her brain. The following day, he actually showed us the images and we could see for ourselves that at every turn things don't look how they are supposed to. They also noted that she had lost a lot of weight, and though we thought she had been nursing, it turns out that she really was just sucking but was having a hard time swallowing (we noticed that she was kind of choke-y but we thought that maybe she had swallowed some amniotic fluid and was just working that out of her system). So that night they wheeled her down to the NICU, hooked up a feeding tube, and began the process of testing and monitoring that we've now been dealing with over the past week. 

Truthfully, the diagnosis and prognosis are much worse than we could have imagined. Two specialists have now told us that they do not think that her brain will sustain life beyond infancy, which is something we never entertained and could never have imagined. Most days, it's hard to believe that this is even real.  

There is so much I could say about the ways the Lord has met with us over the past week and comforted us in the midst of our grief, the way he has given us moments of strengthening and refreshment, and the hope he has provided. So many of you are praying for us and are tangibly loving us by bringing us groceries and meals and watching our boys for us. There has been an outpouring of love and support and we are upheld. Thank you. 

The main thing I want to tell you now and to remember myself is that God is so, so good. And I'm not just saying that because it's the thing that Christians say, even when they don't feel it or believe it. We have felt it more deeply in the past days than I can even describe.  This is not to say that there has not been sorrow or grief; I've been in a puddle on the floor with heaving sobs barely able to breathe at times, but God has met me there and has lifted my eyes to see him who is seated on the throne, who has all power and yet stoops to care for the lowly. Yes, even the hairs of our head are numbered by him (Matt 10:30). This has not escaped his notice, and we have not escaped his care. He is with us in our grief and is working for our good. I want to say so much more and probably will in time; we have already learned so much and God is using this to refine us and shape us in significant ways.  

And as for little Eden Evangeline, she's a delight. She's not a disappointment; we're not disappointed with her. She is our beloved daughter and we will love her with all our might for as long as we can. And she's a dear little thing so I don't think that it's going to be too hard. The next week she is being evaluated by an ENT doctor and will go through a swallowing test (under X-ray to see what is keeping her from being able to swallow). Then a determination will be made to see if she needs a permanent feeding tube. We are looking at probably another couple of weeks in the NICU at least, but we're praying that we can get her home sooner. 

And we're still praying for her healing. We know that it would be a small thing for God to touch her and to cause her brain to grow in miraculous ways. Please join us. 

 

May 24

At this time last year, I was in the hospital waiting for Baby Luke's arrival. I'm pretty sure it was this point in the afternoon that I had already been in labor for a good 10 hours when the boiler at the hospital broke and heat started pouring into my room (and most of the hospital). The thermostat in my room went up to 80 degrees and the indicator bar was way past that. It was hot. I literally wanted to go give birth in the parking lot just to get out of that room (as long as they could bring my meds, haha!). And occasionally I'd waddle down to the "snack room" to open up the ice chest and get some cool air. But that's another story for probably, well... never. 

It's Luke's first birthday today and in classic third child fashion, we don't have a gift and I only just this morning ran out to get him a cupcake to smash. I'll take his picture later for evidence of the day and next week we will have a little party with family. We love our little guy and he's already been serenaded several times with "Happy Birthday to Luke". 

I have a few, very few, quiet minutes right now so here's big picture update of our sweet boys. 

Luke follows the twins everywhere, including to their bedroom when they're sent in for timeout. And they're so sweet to let him tag-along. Right now they love pretending to be the Ninja Turtles. They don't watch the show but Don has told them the stories and they've gotten the little action figures from McDonalds, which is all they need. Jacob is Michelangelo, Josiah is Rafael, Luke is Donatello, Don is Leonardo, and I'm April O'Neil. And Luke really is part of the story in their minds. Sometimes they'll hand him a big sock and say, "Here's your bow staff, Donatello". 

This was a cool rainy day that I let the twins bundle up a little to jump in puddles and Luke watched them the entire time, while pounding on the door (his way of pleading to get out and join them). 

I probably took this to show Don what the house sometimes looks like when he's gone. It makes him all the more impressed and me feeling all the more accomplished when it's slightly picked up when he gets home. These are actually their "quiet boxes" meant to be played with quietly in their beds or in their room. I just don't even know what happened. 

And these next pictures... what can I say? Luke's into everything. 

See how he outsmarted me and got through my blockade? 

Fun at the Morton Arboretum with Aunt Sissy and their cousin, Noella. 

Cruisin' in the backyard. If you only knew how slow this thing goes, but to them, it might as well be a convertible. 

Fun with their friend on a sunny spring day. 

Living their dream riding and driving a tractor at Papa's farm in Michigan. 

He loves to play baseball and he already hits the ball really well when we pitch to him. And this tough guy face, I can't handle it. 

Roadsters

Buying flowers at Home Depot. Nearly every time I'm out, someone comments that I really have my hands full, and I *almost* always respond, "Yes, full of good things!" (got that from a book- can't take credit at all, but it's a great response because it shows how we value our children, it's a reminder for myself, and it tells the little listening ears that they are loved!)

They decided to make a trench on the side of the house. Then fill it with water. (Good thing we don't care too much about the yard!).

My handsome guys. 

These little shorts, shoes, and his bare arms. Love him. 

Sucking on a graham cracker while the twins play soccer. 

"The Lord has done great things for us and we are filled with JOY!" Psalm 126:3

Gift Well Guide

Mother's Day is just around the corner and I thought I'd share a few of my favorite Noonday goodies for a Gift Well Guide! Each of these items are handmade and help to provide jobs, education, clothing, and shelter for women and children around the world. In addition to giving your mother something beautiful or picking out something beautiful for yourself, you're joining a movement that is creating opportunities for people around the world! 

I really love "all the pretty things" at Noonday, but I love the mission even more! And it's been super fun to see my family, friends, and neighbors catch the vision as well!

This first necklace is the Pambil and is probably my all-time favorite (right now at least!). It's handmade with love in Equador by an artisan group that is working to provide job opportunities for women escaping the sex-trafficking industry. The beads on this necklace are very soft and have a variety of texture and color. It can be layered with other necklaces, worn long, or doubled. 

This is the Minted Necklace- handmade with love in Uganda. It's a gorgeous mint color, super lightweight and can be worn as a long single layer necklace or doubled. Love, love this one! Plus, it's only $28- how can you beat that?!

This is the Bethe Rope Necklace, handmade with love in Ethiopia from upcycled artillery. This is another major favorite and a total best seller every season. It can be worn approximately 100 ways (?!)- seriously though, it can be doubled, tripled, knotted, wrapped as a bracelet, or used as an extender for another necklace. 

Favorite earrings right now are the Cow Horn Hoops (top) and Taj Earrings (bottom- get them before they are gone!). They go with everything and are super pretty. Cow Horn Hoops are made in Uganda and the Taj Earrings are handmade with love in India. 

Pictured here is one of my favorite bracelet combos: the Underground Cuff and the Metric Cuff. Both handmade with love in India. Somehow this combo goes with everything! And if you order any bracelets between April 6-12, you'll get 20% off! That's a great deal. Plus, the Metric is only $20 and the Underground $28. 

This is another nice combo: Metric Cuff paired with the Meera Bracelet. The Meera is great for spring/summer and has really pretty fuchsia and mint beads mixed in with gold.

This is the Tangled Beads bracelet, handmade with love in Ethiopia. It is made from up cycled artillery and has two gold strands and two silver strands. Looks great with everything and can totally be dressed up or down. 

Hands-down, all time favorite bracelet is the Very Versatile, also made in Ethiopia. It's a show stopper and goes with everything. This one is more pricey, but is sure to be a favorite for many years. 

Love this Pacifica Scarf! It's super soft and a perfect texture for spring and summer, but I can see myself wearing this into the fall for sure! It's handmade with love in Guatemala and is a nice chambray blue with a blush color stripe pattern. 

This is the Astrida Beach Bag, handmade with love in Rwanda. This comes in three different patterns. It's bold, lightweight, and holds a ton of stuff. I'm planning to use this as a beach bag and also as a library bag since we get to the library more often than the beach. It's $28 and is a great deal for a quality, handmade bag.  

To shop any of these goodies or to read more about Noonday, visit:

www.sarajones.noondaycollection.com 

And if you have any questions, send me an email!

Giving Freely

Have loved this book, Fit To Burst, by Rachel Jankovic for awhile now and probably read through it 2-3 times in the first week I got it. For some reason, I picked it up again this past week and was challenged by the idea of giving more freely... imitating Christ and expecting nothing in return. Free forgiveness, free meal-making and house-cleaning, and a million other ways that a woman can bless her husband and children. Here is an excerpt, with a link at the bottom to read the entire article. 

In Christian circles there is constant talk about free salvation. It is free, thank God. But it is only free to us. God paid a great price for it. Jesus paid with His blood. It is free to us because someone else paid a great deal. And this is why we do not work out our salvation by never doing anything that might be hard or difficult to us. We imitate Christ, and we make sacrifices for others. We do things that are hard, that cost us much, because we want our gifts to be free to others. 

It is so easy for us as mothers to look at the work we do on behalf of our families and resent that it is free to them. Look at those kids, thinking that the clean clothes just appear magically. Look at these people, not valuing the cost of my work. Look at this ungrateful family who just takes the food and eats it. Like it was free! But it is very important that we see the damage that this kind of thinking brings with it. 

When we want the cost to be shared by all, we are not imitating Christ. When we imitate Christ, we want to give what costs us much, and we want to give it freely. Of course we have short-term vision, and often we feel like when we freely give, we need to see right away that it is being used responsibly. We worry that our free sacrifice will make our children greedy takers. 

We want to know, within the next fifteen minutes, that everyone saw what we sacrificed, acknowledged it gratefully, thanked us profusely, reflected on it quietly, and came up with a way to repay us. But God thinks in much, much bigger story lines. 

So imitate Christ in your giving. Do it daily, do it in as many little ways as you possibly can. Find a way to imitate Him in the folding of the laundry, in the stocking of the fridge, in the picking up of other people’s socks. And then decide consciously that you are giving this meal, this clean room, this cheerful Christmas — that you are giving it all freely. And much later, maybe thirty years later, you would like to see your children turn a profit on it. You would like to see your kids taking what they were freely given and turning it into still more free giving. This is because God’s story is never little. He works in generations, in lifetimes, and He wants us to do the same.

http://www.desiringgod.org/articles/the-unbaked-biscuit 

A Big Picture Update

A random collection of some of my favorite pictures over the last several months. I love these boys. They are a gift.