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8.23.2016

A Neurology Update

I decided after my last post that I wanted my next post to be really "normal" and encouraging... happy family pictures maybe. And we are a happy family and I have many pictures I could post for that, but I'm sitting here in a quiet house looking at my baby girl and thought I'd give a quick update on our last neurology appointment, mainly to give some specific prayer requests. 

On Monday we saw our neurologist and she evaluated Eden for the first time since we left the NICU. I was hoping for an encouraging appointment, but sadly that wasn't the case. 

The cliff notes version is that she evaluated Eden's response to light and to tracking movement and she doesn't believe that Eden will be able to see. We won't know for sure for a few more months, but she expressed quite a bit of certainty regarding this (more certainty than I would have liked). She also checked her muscles and she believes that Eden is already showing signs of cerebral palsy because her muscles are quite tight. These things may seem relatively minor compared to her major diagnosis of microcephaly and lissencephaly, but it was still hard to hear. 

Additionally, she recommended that we begin palliative care for Eden. This is going to be a good thing because it will put one doctor in charge of all of Eden's care and this doctor will help to coordinate the other care that Eden receives. This is a hard thing because palliative care is for terminal patients... it's like hospice but for patients where the time limit is more uncertain. She was very concerned with how often Eden is aspirating and believes that she's at a pretty high risk for developing lung infections, which would likely be fatal for her. There is a medication that we could put her on to help dry up her secretions, but there are adverse side effects so I'm not sure that's a route we want to take. She also brought up again "end of life" care and that we'll need to think through our main goals in determining the care and interventions we decide to take for Eden. 

There's much more to this, but you can imagine why it was a hard appointment. 

Here are a few specific ways I'd love for you to pray for us and Eden:

  • Pray that we find a great palliative care doctor. Someone that will be helpful and honest, but also compassionate. 
  • Pray for us as we continue to monitor and manage Eden's secretions. 
  • Pray that we'll have wisdom and be able to care for Eden with excellency. Lots of things come up that I don't know how to handle- like today when there was blood surrounding her g-tube. It's all foreign, so please pray that we'll be given the wisdom and insight that we need. 
  • The cherry on the top of this is that we'd love for her to be able to smile- really smile. It would delight us and her adoring brothers. 
  • We'd also really love for her to see. I'd love for her to be able to see our faces and to see the world around her. We do know that she can hear, and I'm thankful that this is a way that we know we can connect with her- every day she hears that she is loved, that she is precious, and that's she's just the sweetest little thing. And we mean it, and I think she knows that we mean it. 
As I've said before, I really can't think about the future too much, but when I do and the dark clouds start to gather, I remind myself that that grief isn't for today. Today she is doing great, so today we can celebrate. For now we're going to hold her and enjoy her, her doting brothers will kiss her endlessly, we'll go for walks, play at the park, and be thankful for the blessings we have today. 






8.18.2016

Some Random Thoughts on Grief and Grace

I know many of you are wondering how we're doing. And I wish I could answer that easily. 

On the one hand:

  • We are adjusting to caring for Eden. 
  • We are getting used to sleeping less. Really.  
  • I'm more relaxed about a messy house. 
  • We've had lots of wonderful meals brought to us (thank you!)
  • We are getting out of the house more and returning to some normalcy. I even took all 4 to the doctor the other day. We showed up a little late, and Josiah had no shoes on and only one sock but we made it. 
On the other hand:
  • This is hard and there's no end to that in sight. 
The same goes for Eden. On the one hand, she's doing great! But I'm not even sure what I mean when I say that; I guess I just mean that she's home, she's eating and sleeping, and nothing tragic or too frightening has happened yet. On the other hand, she struggles daily, sometimes hourly, with her secretions. She aspirates regularly, she sleeps sporadically (and her sleep is often interrupted because of the discomfort from the secretions pooling in her mouth), her g tube site is healing somewhat normally but has needed some extra tending to over the past days, and we're still trying to figure out how much food to give her and how often and over what length of time to help control her reflux (and it's a huge guessing game since the poor thing can't signal when she's hungry or full because we are artificially filling her belly). But we have made some strides in the past couple of days, and I'm thankful for that. 

So I weigh all of those things and feel like we still come out ahead. We're doing good. God is providing all that we need each day. 

I've been reading through 2 Corinthians regularly and in chapter 6, verse 10, Paul talks about being sorrowful, yet rejoicing. And I think that sums up our new reality. 

There is real rejoicing. We delight in Eden as our daughter. We enjoy her. I love to kiss her sweet cheeks and rub her little baby feet and legs. There is real celebration over her life. And there is real joy in knowing that God is in this for our good, that he has ordained this for our good, and that all of the suffering that we (and Eden) endure will be for our present and eternal joy.


There is still a lot of joy in our home. At any given time, you may find the boys jumping into piles of pillows with their bellies out or having a dance party in the living room. Luke provides almost constant entertainment for all of us as he's learning new words and phrases daily and has stepped right into his role as "little brother". The twins are constantly asking him to chase them or wrestle them or jump on the trampoline with them. He's delighted to join in on whatever escapades they are involved in, and the three of them have a good little thing going. They adore their little sister and are completely unaware that there is anything different about her. 

And Eden really is doing well- especially when you consider that the neonatologist in the NICU recommended that we make a DNR (do no resuscitate) plan before leaving the hospital, and the nurses recommended that we learn CPR right away, and that our home health nurse advised that we know where the nearest hospital is before we left for a family vacation. Basically every doctor or specialist we've seen has made us feel like our baby is a ticking bomb, but from our view she is doing so, so good! 

So why title this grief and grace? Because we're up to our ears in both, and it's seeming like that may be our new reality, some days leaning a little more heavily to one side or the other. 

There is so much grace! That there is still tons of laughter and JOY in our home is grace, grace, grace! That Eden is doing so well is grace! That we now feel like it's no big deal to suction her or hook a tube to her belly to feed her is grace! That we function pretty well on relatively little sleep is grace! We have all that we need every day- grace upon grace. 

And yet there is real sorrow, too. 

Many times when I hook the tube to Eden's tiny belly, my heart hurts because it's not supposed to be this way. Or when she wakes screaming because her mouth is full of saliva and she's scared and doesn't know what to do. (I think she's learned that it's not good to swallow, so she pools the secretions when she sleeps and sometimes they become too much for her and it seems to scare her). It scares me too and it makes my heart hurt. Or sometimes when I wake up and hear her breathing become high pitched and rapid, and I wonder if this is going to be the time when she just stops breathing and I fly out of bed to check on her. She's been fine every time, but I still return to bed and pray that God will help me not to worry about that day but to trust that he will be sufficient for that day, whether it's soon or years from now. 

So how do I wrap this up? We're okay to live with this tension. It's okay to live with a seemingly paradoxical set of emotions regarding Eden's life and disability, sorrowing and also rejoicing. I know many people (ourselves included) would like to just hear that we're fine and then put a nice little bow on that package and move on. This trial just isn't like that. 

But we know this isn't the final chapter- we live with this tension now, but one day it will be all joy. One day Eden will be freed from a broken body and a broken world, and she'll live in a perfect body, perfectly enjoying her God. And as Don reminded me early on, we'll have all of eternity to enjoy her as our daughter with no sorrow or grief or sadness. Lord, haste the day. 
  






8.16.2016

On Eden and Glory

I've wanted to post more and have lots of jumbled thoughts on grief, grace, disability, and living a new normal, but whenever I have some free time (haha!) my pillow beckons me and I don't get around to writing the things I want to remember. 

So today I'm posting something that Don wrote the day that Eden had her surgery. He was helping me think through how God is using her life and the good that is coming of it, even if it ends up being short or marked by suffering. I'm posting this today mainly because I needed to remember this today.

*******************************************

Earlier today while Eden was having surgery Sara asked me how Eden's life is giving God glory. I did a little writing to clarify my own thoughts on this, and I thought I'd share it with you all. 

We can't and never will never know all that God means to accomplish in and through Eden's life. We see things from one little angle. We have a limited perspective. God is infinite in wisdom; he sees the whole picture with perfect clarity. "In his sight all things are open and manifest, his knowledge is infinite" WCF. His wisdom sometimes appears mysterious to us because we only see a small slice of reality.  So we can't know all that God is accomplishing. But we can know a little bit about what he's doing. We can know that he's glorifying himself in the following ways.

1) "For you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sake he became poor, so that you by his poverty might become rich" (2 Cor. 8:9). Though he was rich, he became poor. This is the gospel. Sara and I are rich -- rich in health, rich in energy, rich in resources. Eden is poor. Our glad giving of our riches to care for the poor is a reflection of the gospel. That we didn't end Eden's life like the doctor wanted us to, but are instead giving of ourselves to care for her is a reflection of the very heart of Christ. God is glorified in this. The angels are watching this. 

2) Scripture tells us that when we serve others we should do so "as one who serves by the strength that God supplies--in order that in everything God may be glorified through Jesus Christ."  God has shown himself to be abundantly sufficient as we seek to care for Eden. "I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me" (Phil 4:12-13). The sufficiency, grace, comfort, and power that Sara and I have been given these past two weeks does not come from ourselves. It comes from God. In this he is glorified. 

3) Then God said, "Let us make man in our image, after our likeness" (Gen. 1:26). Eden has worth because she was made in the image of God. In stark contrast to the mindset of the world, Eden's worth does not increase or decrease based upon her ability to contribute or give back. Her worth is fixed because she is a "little god" -- made in the very image of God. It is from his worth that she derives her worth. Our love for this little one made in God's image honors the worth of God himself. It says something to the watching world about God's glory. God is glorified in this.

4) Prayers, compassion, gifts, visits, help, support, kindness have flowed to us from Christ's body, the church. Because of Eden's life, the beauty of the church has shined to the glory of God. God is honored and glorified by this. 

5) Eden's sufferings, which are causing all of this glory to go to God, will be abundantly rewarded on the final day. "For this light momentary affliction is preparing for us an eternal weight of glory far beyond all comparison" (2 Cor 4:17). If much glory is going to God as a result of one of his children's suffering, God will most certainly richly reward that suffering. Therefore, in that day, when God anoints Eden with immortality and everlasting beauty, God himself will be seen to be abundantly gracious and generous as he rewards Eden far far beyond what her suffering deserves. Her beauty is diminished here; her radiance will be the brighter there. "The sufferings of this present time are not worth comparing with the glory that is to be revealed to us" (Rom. 8:18). When we see the glory that God bestows upon Eden, it will result in the "praise of his glorious grace." He will be glorified.






7.27.2016

4 Weeks and Home

I've had so much I've wanted to write about and never the time to do it, and now I have a few moments and my mind is virtually blank. 

So, a few things: Eden is 4 weeks old! How did that happen?! I've learned the feeding tube and have had to troubleshoot a few times and I feel pretty good about the whole thing. In fact, hooking her up to the feeding tube is one of the easiest things I do! I clean her g-tube site twice a day and so far, so good. I took her in yesterday because it looked infected, but thankfully it's not and the redness and discharge is normal. It should be pretty much healed in the next two weeks. Thankful for that! 

She was doing pretty good with her secretions until yesterday when I tried to do some swallow therapy with her. I'm supposed to use a syringe to put one little drop of breastmilk on her pacifier and listen for her to swallow, giving her the chance to practice swallowing with a very small amount. Yesterday, as I tried this at home for the first time alone, I accidentally squeezed out 2-3 drops of milk instead of one. (I was doing this one-handed while holding her sideways on the boppy pillow, holding her with one hand and holding out the pacifier and putting the drop on with the other hand.) Getting those extra drops in her mouth resulted in about a half hour of congestion and labored breathing. It was pretty scary. She has struggled a lot over the past 24 hours with her secretions and I've had to suction her often to help her clear her mouth; this is probably the hardest part of her care because it's when she is in the most distress and I just feel bad because she's uncomfortable and upset and I see her frailty more clearly.  

Other than that, she's a typical newborn. Her brothers love her and ask to hold her all the time. Luke has decided he wants to be the baby and wants to have all of her pacifiers. (Even though I tried to get him to take one as a baby and he refused! Little stinker!). Jacob is the most tender with her and would hold her for hours on end if he could. Josiah loves her as well, but is usually too busy to sit and hold her for any length of time. 




At the time of this picture, Jacob literally asked if I could get her a little closer to him! He loves her so much! 


Josiah's first response to Eden was to sniff a few times and say, "She smells like cheesey noodles!" 


Jacob really is a great help and I trust him with Eden because I know he would never hurt her and he's very careful with her (and if you know him, you know he is not normally a careful boy!). 

Things we're learning: There's a lot of grace in the command to not worry about tomorrow. That was actually one of the first things Don said to me after our 20 week ultrasound when they noticed the missing corpus callosum. The weight of Eden's care is exactly enough for one day and I can't possibly think about tomorrow let alone 2-3 weeks from now or a year from now. I'm getting about 4 hours of sleep a night and that's interrupted by 3 feeds and checking on her 20-30 times to see if she's handling her secretions ok. I can hear her high pitched breathing and the sound of her trying to spit and I just can't ignore that. Many times she's perfectly fine and is just working on clearing her mouth herself which is a very important skill for her to practice. During the night I often feel like I'm literally going to die- I'm so tired and it's so hard, but I wake up in the morning with new strength and usually feel just fine. Help always comes. 

A dear friend sent me an article related to this- here's an excerpt: "His command that we “not be anxious about tomorrow” is a great mercy to us. If we obey him, he will relieve us of a burden too heavy for us to carry. We lay aside the weight of tomorrow’s trouble by exercising two simple acts of faith: we receive and we cast. We receive from God his sufficient grace for today. And we cast our anxieties for tomorrow on God because he cares for us (1 Peter 5:7)." The full article can be found here: http://www.desiringgod.org/articles/lay-aside-the-weight-of-tomorrow-s-trouble 

The other thing we've been thinking about a lot is that joy comes from God. It doesn't come from getting loads of sleep, having healthy children, a big home, lots of money, or everything working out exactly as you hope it will. It comes from nearness to God and him giving you joy in lots of simple things, like watching your two year old coast on his balance bike, or watching your twins bounce on the trampoline, or sitting on the couch with your husband to celebrate your 13 year anniversary with chocolate covered pretzels after a long day. We did this last night and I'm sure had as much joy and good conversation as we would have at a great restaurant.  

Don has been the one to help me think through this and has been a constant source of encouragement and help to me and has been husband and father extraordinaire over these past weeks since Eden has arrived (He's always been a great help and encouragement but since Eden, he's taken on full care of the entire family- he gets our meals on the table, changes Luke's diapers, puts all the boys to bed at night, gets up with them early in the morning, bounces on the trampoline, reads stories, builds with Legos, and on and on. I only have care of Eden, which is probably light in comparison!). Last night as I lamented that we may not be able to get out for dates as much or take vacations or really enjoy a lot of freedom that other families may have, he reminded me of this truth (that joy comes from God) and said that we'll have as much joy as we ever did, and in some ways probably more. And that really has been our experience, despite a hard diagnosis, lack of sleep, scary times of trying to help the baby work out her congestion, and a daily routine that leaves little time to even answer the phone. We're not going to lack for anything and we won't miss out on anything either. Our lives are richer and fuller because of Eden- she brings out the best in us all! 



Sweet Pea tired after another appointment at the hospital. 


Little Peanut watching the lights while letting me type. (And in case you're wondering, she goes by lots of names right now: Peanut, Sweet Pea, Little Sweet, Cookie, Honey Girl and Girl- as in, "Hey, Girl"or "Come here, Girl"- my grandpa used to call me "Girl" and my dad does the same, and though it sounds like it would be cold, it's actually very affectionate and loving. 

And at the time of publishing this post, I do believe she may have smiled at me. It could have been a sleepy smile or passing gas, but I'll take it and say, "Thank you, Lord!" 


"Oh, taste and see that the LORD is good! Blessed (happy!) is the man who takes refuge in him!" Psalm 34:8

7.20.2016

Feeding Tube and Coming Home

I had planned and hoped to do some regular updates on here, but our schedule these last three weeks has left little time for showering, let alone sending email or blog updates. 

The cliff notes version is that Eden had her surgery last Thursday for her feeding tube. The surgery went well, praise God! And she has tolerated her feeds well and the g-tube site is healing nicely. As of Monday of this week, we were notified that she might be able to come home on Thursday (tomorrow). And as of Tuesday (yesterday) we were told we needed to complete some training and spend a night here in the hospital caring for her on our own before we bring her home, which we're doing today with the hopes of bringing her home on Thursday at some point. 

So, I'm sitting in the NICU now hoping that she sleeps just a little longer so that I can type this update... 

I just finished the training this afternoon on the feeding tube, and I was "trained" on the suctioning device earlier this morning. I say trained, but basically I was holding Eden and feeling kind of sick and barely could even listen, so I'll have to be trained again on that before we leave. The suctioning device is basically to help her in case she has trouble with her secretions and needs us to pull any of it out of her throat to clear her airways. In terms of training, I think I have it down but I'll have the rest of today/tonight/tomorrow to practice without the help of a nurse. And Don is joining me tonight, so I'll be training him as well and  he'll have some time to practice also.  

The past couple of days have been very heavy for me even though we've been excited to have Eden coming home soon. Something about the reality of her condition and what caring for her will look like on top of three busy little boys has left me feeling totally overwhelmed. Never before have I been at a place where I feel so completely in over my head. I absolutely know that there's no way I can do this on my own and that I need God to strengthen me day by day, hour by hour in order to even survive, let alone thrive. I'm sitting in a small cubicle area surrounded by boxes of medical supplies and I'm so far outside of my comfort zone that I've been nauseous all day. I can barely stay on top of my boys' basic hygiene, and now I'll be cleaning Eden's g-tube site and setting up feeds and cleaning tubes every three hours around the clock. 

But despite the heaviness, there has been evidence of God's care in three specific ways:

*Saturday morning I was having a little bit of a hard time- just feeling like this is never going to end, it's never going to get better, she's never going to get better, and in fact she'll probably only get worse if the doctors are right in their prognosis. Then my phone rang and it was a flower shop in town saying that they had a delivery for me. It was the perfect timing and the perfect thing. Since Eden's diagnosis way back at my 20 week ultrasound, I have been buying or cutting fresh flowers to have in the house as a reminder of the many beautiful things that God gives us to enjoy and as a reminder of his care for me. And I knew that God had sent those flowers for me- that he had ordained the timing of it all to comfort me and to remind me of his care. 

*Last night after celebrating the twins' birthday and putting all the boys to bed, I came back to the hospital to see Eden. I was crying walking in to the hospital, just feeling like "I can't do this. I'm never going to be able to do this." and my phone alerted that a message had been sent from my dear aunt who reminded me that I can do this and that I will do well because of who God is. Again, just the reminder I needed and the timing was perfect. 

*Then, while walking into the NICU, one of the doctors was standing at the front desk and said, "Wow, what a beautiful sunset!" as I walked through the door. I turned around and could see through the little square window the sun setting behind the trees outside the hospital, and it really was beautiful. And it was a visible reminder of the greatness of God. And I had totally missed it on my drive in and would have missed it had the doctor not said it at that exact time. 

And here's a fourth one I'm just thinking of now. I mentioned earlier that I was feeling sick today, and I really was. In fact, a nurse took my temperature because I think I looked faint. I was really thinking I was going to have to tell them that I needed to go home and how it was going to be embarrassing and it was going to delay everything, but several of you texted me and I asked you to pray and I know that people must have been praying because about midway through the training the nauseousness completely lifted and the heaviness and feeling of being totally overwhelmed was gone too. And as I sit and type this I feel greatly refreshed and encouraged and hopeful. So, thank you. 

See how well God cares for us? We're going to be okay, better than okay. 




7.12.2016

ENT Update and Surgery

Eden had her evaluation with the ENT doctor last Friday and the results were... mixed. On the one hand, they were able to determine that she does need a feeding tube and we can forego any future testing and move right towards the surgery for the g-tube (which is scheduled for this Thursday morning at 7:30). This was good news in many ways because it means having her home sooner. 

The hard part was that they were able to see that when there is liquid in her mouth, it goes right into her airway rather than down into her stomach. She is not able to protect her airway and send the food down the right tube, so to speak. This is something that should happen unconsciously as the brain sends the right signals to the right places. Because of the complications with Eden's brain development, or lack of development, she is not able to swallow and in fact, it's dangerous for her to try to do so. If too much liquid gets down into her lungs, it could cause her to aspirate and could lead to lung infections and pneumonia. 

So, we're thankful for modern medicine and things like feeding tubes and excellent doctors and surgeons, but sad for more evidence that our little sweet's brain isn't working as it should. 

Please pray for her during her surgery on Thursday. They will put her under anesthesia, do the surgery, and then she will likely have at least another week or longer in recovery at the NICU. They want to make sure that it heals well and that she is able to tolerate her feeds via the new tube before they send her home. And then we will have lots of training to make sure that we're prepared to take care of her at home. 

We know that this is a relatively easy procedure and that infants tend to tolerate these types of tubes really well, but I'm still nervous. I know that her heart is good, her lungs are good, but she's still a fragile little thing and we're praying that she makes it through without any complications. A nurse even asked us if we wanted to have her blessed or baptized before the surgery and it made me wonder if they think somehow she won't make it. That's probably not the case, but it has played with my emotions a little and I'm finding myself having to actively entrust her to the Lord again and again, which is probably exactly as it should be. 

I don't know exactly what to say other than that we are taking this a day at a time. God has given us the resources for today and has asked us to trust him with tomorrow. And we do. We know that he has been faithful in the past and will continue to be faithful in the days ahead. 

ps. Isn't she sweet? I've discovered that she looks great in periwinkle and mint and that her lips are the perfect heart shape. I can't wait to have all of those cords removed for better snuggles and easier access to those kissable cheeks. 












7.08.2016

Psalm 139

Lord, you have searched me and known me!
You know when I sit down and when I rise up;
you discern my thoughts from afar.
 You search out my path and my lying down
and are acquainted with all my ways.
 Even before a word is on my tongue,
behold, O Lordyou know it altogether.
 You hem me in, behind and before,
and lay your hand upon me.
Such knowledge is too wonderful for me;
it is high; I cannot attain it.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall blead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

How precious to me are your thoughts, O God!
How vast is the sum of them!
If I would count them, they are more than the sand.
I awake, and I am still with you.

7.07.2016

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. 

 








5.24.2015

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