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

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. 

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. 

Psalm 139

O 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 Lord, you 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.

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.