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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. 



Diane said...

Sara and Don and sweet boys,
our prayers are with you. She is beautiful. If there is anything we can do for you from Michigan, please, please let us know. Diane and Gavin.

patdurham@aol.com said...

What a beautiful tribute to your faith. It is obvious that your lives have been touched in a very special way. I am praying for many miracles to happen for you and your family.