Blog Archive

Thursday, February 25, 2016

Heart, liver, spleen...oh my!

The results are beginning to roll in.  Overall the news is good. Thank you for your prayers and all your notes of support for us today. 

Elizabeth was a rock star. She was brave and cheerful and aside from waking up crabby and hungry (which she's allowed I guess) she was a delight all day! She had to lie still for 5 hours following the procedure, so it's a great thing that the sound of music is 3 hours 44 minutes long!

She rolled with all the events of the day like the champ she is.  We, on the other hand, are out of shape! Matt and I are pretty sacked after the long day of sitting and waiting, which probably indicates we're out of hospital practice, which is a great thing! If you want to know the nitty-gritty, here's my best effort before I crash...

The heart results are primarily positive: No pulmonary hypertension! She had the measurements indicating PH, but when they measured pressured inside her heart, everything is normal! That's great news!

Now for the crazy twist: Instead she has a pulmonary vein that's dumping oxygenated blood back into the right side of her heart (instead of into her left side) which is what caused the right side of her heart to grow mildly enlarged. (It's doing extra work!) But the surgery to repair it is dramatic (open heart) and since she's asymptomatic, it's not dangerous, sooo we see cardiology every 6 months and watch it...

In the grand scheme, it's better than a PH diagnosis and they got extra pictures of her repaired aorta (from her surgery at 3 days old) and confirmed that her mitral valve and aortic root are stable.

So we are happy with that!

Her liver biopsy results will take some time, but it appears based on the measurements they took while inside, that while the clot/scar tissue remains in place, her portal hypertension is stable! This could be due to the outstanding number of varices she has, so we have to get her endoscopy scheduled to check on those, but this too is a sign of forward progress.

There were some differences in the results of a recent MRI and precious ultrasound of her abdomen, so Matt asked and they agreed to do a repeat ultrasound to answer some questions  (Horray for multitasking!) At times if felt like she was getting her 60k mile check up!

So that's the low-down. She remains a unique and quite a medical marvel, and we are grateful that she's home tonight, full of joy and peace, though a little sore at the two entry sites. Tomorrow she plans to spend the whole day with grandma, and as her teacher, I've decided that might just be in the lesson plans. 

Goodnight friends!
 Love, Matt & Sara

Wednesday, February 24, 2016

A Procedure for Elizabeth

In the midst of a new address, a new job and new everything, one thing hasn't changed: our need for prayer and God's mercy over Elizabeth's health. By far the most complicated component to our move has been getting Elizabeth up and running with an entirely new set of doctors. She needs a lot of specialists! Fortunately, as a result of Matt's academic career, we've been at some amazing Children's Hospitals, and Children's Hospital of New York is no different.
The blessing and the curse of a new set of eyes on our sweet girl is that no one is content with what had come to be considered her "baseline", so we're running tests and investigating symptoms afresh. That has meant more appointments, pricks and tests, and we're once again amazed at Elizabeth's courage and steadiness through it all. 

Recently, her echocardiogram revealed that the right side of her heart is mildly enlarged and would indicate that it's having to work too hard to pump blood into her lungs. The only way to determine if she truly does have pulmonary hypertension is to do a heart cauterization under anesthesia and measure the pressures in each chamber. If she has PH she will need medication and special considerations whenever she's under anesthesia. The link between portal hypertension (increased blood pressure due to the clot in her liver) and pulmonary hypertension in children is a more recent discovery and she was only screened for it because CHONY has recently set up a protocol for when a 10 year old comes in with portal hypertension!
Elizabeth's heart cath is scheduled for tomorrowFeb. 25th, and because her Dr. Daddy is on the case, he advocated to have a necessary liver biopsy done at the same time (one fewer trips to dreamland!) Her liver biopsy will help determine if, after years of regular endoscopies, Elizabeth is a good candidate for a liver transplant (another case of a "new set of eyes and a new plan").  So would you pray for our dear girl? She's the first case so we're scheduled to arrive first thing tomorrow morning. Grandma Harms has leaped to the rescue and will fly in today to stay with Ruby and Hannah and help us to manage any surprises. 

With all the fun adventures and exciting changes, it's easy--even for us--to forget Elizabeth remains in rather fragile health. She bears is with courage and grace so sometimes we don't fully grasp how many things she has going on.  But this one feels big and slightly overwhelming, as He has so many times before, we need God to sustain our family and carry our little one through.
Thank you for your prayers! We'll keep you posted!

Matt & Sara

Saturday, February 20, 2016

New Shoes & What They Taught Me About Laying Down Shame

What good is being shame-free when I don't feel shame-free?

After my revelation of grace, I knew the truth. I knew scripture said I was free of shame...that no accusation could stick...that even in the midst of my failures, CHRIST in me was accepted, so I was accepted and beloved and even the object of his great delight and affection. But how could I keep remembering that when I exploded in anger, when I judged myself for my messy house, or was sucked into a comparison cycle on Facebook? That was tricky.

But then God told me about my new shoes.

God mostly speaks to me in pictures and metaphors. He knows they stay with me and it brings me such joy to unpack them and find surprising layers of application. I sit with them for weeks or months and it seems like everything gets filtered through my newest  insight. So my shoes...

If you've been around little girls, you know sparkly shoes are always on trend. No outfit is too casual, no activity too treacherous for sparkly Mary-janes.  Ruby, is especially fond of said sparkles and seems to find a way to wear them long after she's outgrown every other similarly sized shoe. She reaches for them them, even if they give her blisters and creases in her toes!

But in the spring of 2013, in the middle of a shame spiral, I pictured Ruby cramming her foot into those old shoes and envisioned my own demeanor as I crouched down beside her to say, "Let me take those, Honey. Those old shoes don't fit anymore. But these, they're new! Here, take them! They fit! You can dance and play and be free! Give me those old shoes and I'll toss 'em. They had their time, now it's time for something new."

Isn't that like us?  We love the security of the familiar. Even when it doesn't fit anymore or even hurts us every time we reach for it. Even broken patterns can feel deceptively comfortable. Anger, blame, martyrdom, control, self-comfort that justifies and leaves no room for self-reflection The small measure of comfort we gain from these tools seems to outweigh the cost...but it doesn't really, does it? 

Before becoming shame-free, I would have condemned myself for all the things I should have done, and yet again, I failed to do. Overwhelmed with a homeschool decision I should have faced head on, instead I binge-watched Netflix. I mismanaged my time and then lashed out at the girls for being slow to get out the door. I didn't take care of myself and then felt crappy and crabby and who was to blame? It was my own fault, right? All my old tools led right into a shame cycle and I was defenseless against the accusations leveled by the accuser. (My girl Christa zeros in on this cycle in this beautiful post.)

But what if our Father is crouched beside us in that moment. Not with judgement and exasperation, but with delight and affection and brand new shoes! "Sister, lay down that anger, you're flawed, and your kids are flawed and I put you together to teach and receive grace". "Sweetheart, they require more patience than you have because I have MORE I want to give to you! Come to me and receive. Put on these new shoes...the fruit of my Spirit dwelling in you."  This is what God has been saying to me in the last few years. The truth is, He's been saying it all along, but finally I'm hearing Him! Finally, I'm believing I can just set down the old shoes with their shame and guilt over all my failures and imperfections and receive my new shoes full of a thousand second chances, grace to cover my inadequacies, and the truth that if Christ-in me is absolutely enough, then I AM ENOUGH!!

And the most insanely amazing part is, every single day, I get to choose! A hundred times a day I get to reach for my new shoes of freedom, and permission and beloved-ness...and then when I forget and try cram my foot back into perfectionism and striving for approval, I get to hear him say, "Darling girl, let me have those old shoes. Here, take these...Dance. Be goofy! Be bold! Be beautiful!"


Be free!