She is here!

And already a week old, if you can believe that. This is the best picture I could get this early morning in the low light of our living room, as she and I spend some quality time together while the rest of the house still sleeps.

This is sweet Corie Elise, our fourth child. She was born at 5:40 pm on December 21st. She weighed 9 pounds 15 ounces, and she is by all accounts absolutely, deliciously perfect. My love for her was fierce and immediate, and as with my other children before her I know I would go to any length to protect her from this mad, mad, mad, mad world.

So much of my knowledge and experience with newborns had been packed deep into the recesses of my mind after three years of not having one, but it's all coming back to me now. Every little facial expression and noise--it's all so familiar yet just as endearing as ever. The routines, the sleepless nights, I remember them well now.

Our older children have been a mix of curious to doting. Ella, whose reaction to being unseated as the youngest I most worried about, has been sweet and for the most part gentle in her dealings with Corie. I had envisioned something with more jealousy and/or rough play. She doesn't really understand why she can't touch the baby when she's sleeping, but that is totally manageable. Cooper tells me he loves "our newborn baby", but in typical Cooper fashion has been mostly hands off so far. He helps me when I ask him to bring me things and doesn't seem to mind doing so. And Jackson is over the moon in baby love. It was all I could do to properly take care of Corie in between all the times her oldest brother wanted to hold her those first few days we were home. He too has trouble understanding not to disturb the baby's sleep, but he "just loves her do much" he can hardly help it. I totally can relate. My cup overrunneth.

♦

Cousin Stella Update

Sometimes, my heart is filled with such heaviness that I can hardly be distracted by anything else. I want life to be fair and sane and predictable, and for as often as it has proven not to be, I still hold out hope for the next time. I want there to be a limit to the suffering any one person must endure, yet I have yet to be witness to it. I think that's what makes Jesus so appealing to me. He never promised this life would be easy; in fact he said quite the opposite: "In this world, you will have trouble." I would have a hard time putting my faith in a god who says otherwise because, often, everything is NOT okay, and refusing to acknowledge how difficult this life can be is intellectually dishonest and leaves people feeling tricked.

That being said, Stella, our 2 year old cousin, is no doubt in a life or death battle against this apparently very aggressive, malignant brain tumor she has. The family received bad news yesterday that the tumor is spreading faster than anyone expected and that the chemotherapy will have to be started sooner than later to give her the best chance for survival. It is risky because she is still recovering from shunt surgery, but they are running out of time.

Stella, whose parents have already endured so much heartache in the loss of their infant daughter Charlotte 4 years ago; Stella, whose 7-year-old brother Davis has had more than his fair share of exposure to death and dying. Why, why this family? Why can't this cup pass from them? No one should have to be strong even once in the face of the uncertainty of whether their child will make it, and now here they are a second time. There are no easy answers. There are no magical words. There are no guaranteed happy endings. But there is still hope. And as Amanda (Stella's mom) says, there is still today. There is still prayer. God is still who he was yesterday, and while I will never understand these things in this life, I will trust & I will pray.

If you'd like to follow her story, Stella's caringbridge page is here: www.caringbridge.org/visit/stellamulhearn

♦

The beginnings of confirmation and a plan going forward

I think this is our 5th day in the hospital. Time is passing sowly and the days are running together a bit, but Ella has handled being cooped up really well, which is a blessing.

Dr. Luat came to see us this morning with printouts of the EEG from before, during, and after Ella's seizure yesterday. She said that everything she sees indicates that the seizure started on the left side and generalized to both sides shortly after. Then when the seizure was over, there continued to be abnormal spikes on the left side for a while. This correlates with what the PET scan showed--a likely left-sided brain abnormality--which is what we were hoping for because it means that surgery could help her.
The doctor would like to capture at least one more seizure if not two because then we can see a pattern and know for sure that this is typically what her brain does, rather than being an exception to the rule.

It seems we will be here at least one more day to give Ella time to have more seizures. My mom continues to be here with us, which is a huge help since one of us has to stay in the room with her at all times. It is an active job to make sure she doesn't get tangled in her wires or accidentally pull her leads off, let me tell you.

That's what we know so far. Thank you for keeping up with us and for your thoughts and prayers. We miss our boys at home, but I'm glad we're getting some useful information and making the trip worthwhile.

♦

Making progress

Right after waking up from a long nap this evening, Ella finally had a seizure while hooked up to the video EEG. It was exactly like the ones she's been having since March, which is what needed to happen--a typical seizure while hooked up. I've never been happy to see a seizure before now.

I hope they got lots good information from it. And a bonus was that the nurse was here at the onset & observed the whole thing too.

Our doctor would really like to see at least two typical seizures, so we have at least another to wait for. But her pattern has been to have a second seizure in fairly close succession.

♦

Ella Update

It was brought to my attention that some might want to follow Ella's progress while in the hospital here (instead of just on Facebook). I have copied my last several status updates so those who want to can be brought up to speed. And going forward, I will do better about posting in both places.


Friday Evening

We made it to Childrens. Ella's all hooked up to the EEG; the actual hook-up was not her favorite thing. The doctor asked us to keep her up until now because sleep deprivation may help trigger seizures. No news yet.

Also, in this huge hospital the chances are crazy slim but we are actually 2 doors down from Stella! We got to see her smiling during a blessed visit from her brother Davis. She is precious.


Saturday morning

Good morning! We're up bright and early today--again because of the doctor's orders. No seizures upon waking. Next opportunity will be nap time probably. Ella is missing her second straight dose of medicines this morning. Perhaps we'll start to see something soon.


Saturday evening

No seizures today. Still just waiting. Ella had a pretty good day. She's handled being tethered to the wires with considerable charm and has been mostly pleasant all day. She got to see her daddy, papa, and brothers on skype, which she loved. We have to keep her up late again tonight. I hope we capture some useful information tomorrow.


Sunday Morning

No seizure again this morning. The attending was just here. She wants the EEG tech to try some flashing lights and have Ella blow on a pinwheel, hoping to trigger some activity. Today begins the third day without medication.


Sunday Evening

Not trying to be a broken record, but still no seizures for Ella. She continues to be a pleasant little girl though and has been running circles around the room.

I went out today for wifi access (children's has the app store blocked) and got some new free apps for mom's iPad so that Ella has a variety of games. Ella is blowing me away with how quickly she is picking up how to use it and what the different games require of her.

Pray we get seizures recorded soon. We are looking forward to being back home.

Speaking of which, Stella got to go home today. Pray for her increasing strength and all her upcoming treatments.


Monday Midday

We are set to stay until at least tomorrow at this point, since there's been no seizures. Dr. L wants to take advantage of this test since we've come all this way and gone to all this trouble, so she thinks we should keep trying. I'm glad that we aren't settling for nothing, but my heart has turned toward home, which makes staying here difficult at the same time.

Ella maintains her pleasant & playful disposition, and I'm very grateful for that.

Odds are in our favor that a seizure should happen soon. Her last one was last Wednesday, and they average around twice a week in frequency.

If you see them, hug my boys for me. I'm missing them like crazy.

♦

On Being Known

Some of the best conversations with my kids happen with breath intermingling, eyelashes tickling cheeks. I see their people-ness and their goodness, as yet (mostly) unadulterated, and we talk superheroes or God or The Day. We nod in agreement about the rightness of it all. We Know each other in those moments and find belonging there. Even my sweet Ella, with undoubtedly much to say yet a brain that keeps most to herself, likes to get close and pretend to whisper her secrets to me. She too wants to be known.

It is important work to be the confidante of a child. It may not seem like it at times and can get lost in the busyness, but oh the fleeting wonder of it! It is mere seconds before I will hear my middle child ask that I read him a bedtime story for the last time. I know better than to take that for granted, yet selfishness wins out more than I care to confess.

I remember and recommit to being present in these moments so freely given, knowing that just over the horizon is a sea of "fine"s and "nothing"s. And surely those years will have their parental rewards as well; I'm just not ready for them yet.

♦

How we loved

(as if the title doesn't give it away, I feel I should make a disclaimer that the following post is gushy. You've been warned. ;)

(you might be interested to know what spurred this post. Here is the background.)

I remember it like it was yesterday, the wooing and the breathlessness. The I-can't-wait-even-one-more-minute-to-see-you palpitations.

It surprised me, how I had begun to care for him without knowing it at first. He says he knew how he felt from the beginning. I was clueless about that too, but looking back I see it now.

Much of our courtship was spent apart. I still haven't decided, years later, if that was a blessing or a hardship--probably a mix of both.

We got good at letter writing and too-brief, often poorly connected phone conversations. We longed for more time, more words, less miles between us.

When things got hard for him in South America, I just wanted him home. He made that happen just after Valentine's Day my senior year. Kevin Thiemann made him sit in a huge, uncomfortable box delaying the surprise until our Bible study was over that night, not wanting to derail our group. I can still picture it, and it still makes me smile. Only love would make him stay in that stupid box, for what had to have been an hour and a half or more.

We were engaged soon after that, and then, as it had defined our relationship, we were apart yet again. This time it was me who left. To India. For two months. Again with the letter writing and broken phone calls.

We set The Date right after I got home. Two months out. Enough was enough. We made quick decisions about flowers and cake and dresses and tuxes, longing for the day when we could just be. Together.

We spent the whirlwind of our wedding smiling till our faces hurt, full of joy and excited to start our lives together. We drove to Tulsa that night to catch an early plane the next morning. We must have said, "I can't believe we're married!" at least 20 times a piece in the two hour drive there.

We loved big and strong but not yet deep, that would come over time. And it has. Through career changes and diagnoses and moving and babies, we have clung to each other. Through selfishness and immaturity, through stubbornness and perhaps because of it, we are still here together, clinging and loving.

I loved him then, and I love him now. May God's grace continue to make our youthful promises of forever a reality.

♦

Next Steps (Detroit Day 4)

Yesterday was a day full of information. We met with Dr. C and his team for quite a while at his office. We looked at scan results, pulled up YouTube videos of ella's past and current seizures, answered lots of seemingly unconnected questions, and basically had our minds blown.

I'll try to summarize but there was so much to digest and much of that is difficult to explain. Here goes nothing.

I tried to go in with no preconceived notions, but as it turned out I couldn't help it. I went in with the assumption that Ella's development level would be too advanced to be considered a surgical candidate. I was also unsure that a single focus (one bad part on her brain where the seizures are likely coming from) could be found since her MRI was clear.

I was wrong on both counts. 

Ella's development, especially her speech being at the level of (in my layman's estimate) that of roughly a 12-month-old, is concerning to Dr. C. He believes that not only will she NOT eventually catch up (as many practitioners have told us) but that the gap will continue to widen between her and her typical peers. I had become discouraged with the slow pace with which she acquires new words and how she is still not putting phrases together, so I guess it's not entirely a surprise that she may not do it on her own after all, but it's still disappointing.

I'll get back to the speech thing in a minute.

The PET scan (which measures brain activity) that we had done earlier this week showed that Ella likely does have a seizure focus, perhaps at a microscopic level that would not show up on MRI. And instead of being on the right (like the original MRI suggested) it's on the left; Dr. C believes Ella has a cortical dysplasia (bad spot) in the temporal lobe that is affecting Ella's speech center and that what speech she does have is coming from her right brain (which is not naturally what occurs and could therefore account for her great delay). He also thinks that she might have some abnormality in her left frontal lobe. This makes more sense to me than any CD being on the right side because Ella has always had more right-sided involvement during her seizures which would suggest a left-sided problem.

Interestingly, Dr. C thinks that Ella's left-handedness is pathological. That she was born to be right-handed but because the left brain is damaged she switched to her (right brain controlled) left hand. This theory is complicated by the fact that I am left-handed, and there is some left-handedness on Chris' side of the family too, so it COULD be inherited but the doc says it's still suspicious for a damaged left brain.

But I digress.

All that to say that preliminarily Dr. C thinks that Ella's best chance of a good outcome (which he defines as not just seizure control but allowing the child to catch up to her peers' development) is surgery. Specifically surgery that removes the damaged parts of Ella's brain--up to almost all of her left hemisphere (leaving the motor cortex intact to prevent weakness on her right side) if necessary.

Before we can go forward with surgery, which he believes should happen sooner than later to protect Ella's intellect, there's a few things we need to do first. Namely, we need to make sure that Ella's right brain is normal. It won't do her any good to remove some of the left brain if the right brain cannot compensate. Dr. C believes that Ella is too high functioning to have bilateral damage. I happen to agree with him too. But to make sure that the seizures are coming from the left side only, we need to get an actual seizure on EEG. He recommends that we take her off her meds cold turkey right before hooking her up and keep the test going until she seizes. We will probably do this at Ark. Children's within the next few weeks. We did have an EEG back in May or June that showed left-sided spikes, which at the time didn't make sense but now may be the evidence we need. Dr. C wants the squiggles from that test (his words), not just the written report. I'm not sure how to get that, but again he wants it within the next few weeks.

Once we get these last bits together, and as long as nothing contradicts his preliminary determination of left sided cortical dysplasia, Dr. C will present Ella's case before a board of 20 neurologists and epileptologists who will make the final determination as to whether Ella is a candidate for surgery.

This will likely happen pretty quickly. Her age is fast approaching three years (an unwritten marker for when damage from seizures starts to become irreversible) and I am only getting more pregnant by the day as well which would make it more difficult/less advisable that I travel.

I'll save the specifics of surgery for another post, as this is already quite lengthy and we haven't really gotten all the specifics anyway--not wanting to put the cart before the horse so to speak.

As to whether we will give the green light for surgery should Ella be approved, the short answer is yes we probably would. I'll save the long answer for that for another time too.

Thank you for following along with us, for your prayers, your encouragement. We'll continue to lean on your support as we go forward.

♦