Cardiology Update!!!!

So, for any of y’all that don’t know, back in 2006, I delivered my daughter Hannah via emergency C-section due to severe preeclampsia.

Long story short, my physician was a third-generation OB/GYN who had basically written off my complaints of being short of breath during my second and third trimester. My daughter was delivered at 34 weeks, and the preeclampsia was “supposed” to resolve…except it got worse. I wound up in full congestive heart failure due to peripartum cardiomyopathy and pulmonary hypertension. My left ventricle blew up like a balloon–it was 3x the size of the rest of my heart, and my lungs were full of fluid. In the first night after my diagnosis, if I remember correctly, they removed 30 pounds of fluid from my body that I had retained. Dealing with that, post C-section? Not cool.

As most of you know, my daughter passed away at 29 days of age, due to Late-Onset Group B Strep and bacterial meningitis. Her cause of death was not due to my heart failure-it was a completely unrelated issue. We were told for years that due to the extent of the damage my heart had gone through, that we should never have another child….but we did not believe them. Cardiologist after cardiologist refused to see me as a patient, until Dr. Michael Paul, perinatologist at Mo-Bap, referred me to Dr. Robert Kopitsky, who did the right tests and discovered that miraculously, my heart had recovered to running at 50-55%, which was completely normal! I had no scarring, no permanent damage, and I was cleared to get pregnant with my son. It was the best news I’d ever heard!

Through my pregnancy with Jericho, my heart was closely monitored, and I was admitted to Mo-Bap at 32 weeks along. At that point, my cardiac function was already less than 30%. It continued to decline, and the decision was made to deliver early once again. I had excellent care, and my miracle baby was born! My heart was still an issue, and remained closely monitored & medicated for the next few years.

In 2016, I had an echocardiogram performed, and my cardiologist (I’d had to find a new doctor due to insurance changes) put my estimated cardiac function at 40-45%. That’s not bad, but it’s not normal; however, my cardiologist said it was acceptable and to be happy with it, “because you’re stuck there. I don’t think you’ll see those numbers improve.'”

And you know what? I was happy with that. I mean, c’mon, I almost died–twice! I’m happy with what I can get!!!! I took my regular meds and considered myself blessed!

Last month, my new PCP said it was time to check on my heart again. I’ve had some issues with stress, headaches, and back pain, so she wanted to rule anything out. My cardiologist agreed, so last week, I went in for a new echo. I got the phone call from his nurse today, as I was getting ready to leave my office.

MY HEART FUNCTION IS AT 60%!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m completely floored–the nurse said, “We just don’t see that. We don’t see those numbers with people with your history. Someone is looking out for you, for sure.” HA!!!!! Ya’ THINK?!?!?!?

My mind is blown. Like, I wasn’t even praying about it–I just accepted 40-45% and went on my way. Subconsciously, I think I was writing off even trying to exercise or anything, because why bother if I’m “stuck?” I come from a long family history of crappy hearts, so I just took it for granted that this is my life.

BUT IT’S NOT.

God takes over and answers prayers when we don’t even ask. He works miracles that we don’t expect or anticipate. David & I are in this season of struggle, where things have been extremely stressful. Yet in this, over and over again, I keep seeing little things, and big things, and random things, that remind me that God is watching. He is PRESENT. He meets needs we didn’t even know that we had. He loves us, He works in our lives unexpectedly, AND HE STILL WORKS MIRACLES!!!

Spiritually, mentally, and now physically (multiple times!), my heart has been broken and repaired in miraculous ways. I know it may sound dramatic to say, but I will shout this testimony from the ROOFTOPS, y’all, because I know my God is in the business of healing hearts.

“My heart overflows with a good theme; I address my verses to the King! My tongue is the pen of a ready writer. You are fairer than the sons of men; Grace is poured upon Your lips; Therefore, God has blessed You forever.”–Ps. 45:1-2, NASB

Stay little….just a little while longer…

He crawls up beside me on this couch where I’ve been recuperating for the millionth time…”Play with me, Mommy!”

He sounds off–my Mom-radar is triggered, & I covertly check his cheek for warmth. Nope, all good. He snuggles up. Evidently, “play with me” is Rico-speak for, “I’m tired, and I just want to use you as my giant pillow, Mommy.” I oblige. Even when he hits a sore spot, or digs in his dagger-like elbows to jockey for position, I welcome him to this space that he has made on my lap. 

He takes his glasses off, he pats my arm, and he floats back-&-forth between watching, “Meet the Robinsons,” & whatever 5-year olds dream of.

He really is beautiful.

He gets those eyelashes from his father. 🙂

I know that I have to be consistent, set rules, maintain boundaries. I have to have structure, schedule, education, etc….But sometimes? I just want to look at him. My little miracle boy…Gosh. He’s just such a gregarious, hilarious, mysterious little creature….he’s happy, sunny, and just plain glorious. He makes my heart smile in ways I never could have understood, and I am so, so grateful for him.

I was a big advocate of “baby-wearing” from early on with him. We started with a Moby wrap (thanks, Kat & Susie!), went to an Ergo, and finally, moved up to a Tula that can go up to 50lbs. He’s just now 40lbs., and because of my surgeries, I haven’t been able to backpack him like I was. And, although he still meets the size requirements, he’s 5, so there’s that. I’ve been purging the house, simplifying closets and storage,  etc., and when I cleaned out my car, the Tula was sitting there. 

I know I can get a good price for it.

I’m not ready to sell it, yet. 

I’m not ready to close that chapter. 

He’s growing up so, so fast…How can I save every moment? How can I hang on, but let go while he grows? He met his kindergarten teacher today, & I am more emotional than I’d like to admit. Kindergarten!!! But….but….He was just born, like, yesterd……oh…..

You start letting go the second you say hello.

Go to sleep, Beautiful Boy, and I will still be your squishy Mama when you wake up. Stay little just a little while longer…..

Grief, Gratitude, and the Grace of Pumpkin Spice

4 years ago, I wrote the following (thank you, Timehop):

“I’m in a season of celebrating one new life, while remembering the short life of one gone far too soon. It’s conflicting, celebratory, sad, & a beautiful dichotomy that is not lost on me, even in my current chaos. Hello, Autumn-you remind me again of what is lost, even in the midst of great, wonderful, amazing gain…”

If you’re new to my blog and haven’t read the “About Me” section, then you may not have picked up on the fact that my husband David & I lost our first daughter, Hannah, at 29 days of age, to late-onset Group B Strep with Bacterial Meningitis. I could wax loquacious about the details, but I will spare you (and me), and stick with the general, “Google It” response that I tend to give in order to stop reliving the worst 5 days of my life.  Our daughter was a preemie (34 weeks), and could not fight off the flukiest-of fluke diseases (even though she was born completely healthy). My pregnancy with her basically wrecked my heart (physically and emotionally), and it was nothing short of a miracle that we conceived and successfully delivered our rainbow baby, Jericho, 7 years later. My pregnancy with Jericho was spent partially in the peripartum “spa” (if you’ve been “incarcerated” into peripartum care long-term, you know I’m joking) of the amazing Missouri Baptist Hospital, under the care of phenomenal doctors (shout-out to Michael Paul, MD, life-saving and baby-loving perinatologist) and nurses that I couldn’t have survived (physically and emotionally) without.

Bringing home a newborn after losing one, is a strange, difficult, conflicting process…For Jericho’s first month of life, I’m pretty sure I didn’t sleep (which led to some serious post-partum issues, that I am neither ashamed of nor silent about. Post-partum depression is real, and if you’re suffering from it, save yourself and your family, and get help), and I’m not so sure my husband did, either. I had a full 8 weeks at home with my little guy, and I think I spent most of my time crying happy tears, crying sad tears, swearing about a lousy milk supply, praying that I didn’t screw this up, and thanking God for how He keeps His promises….while also praying with everything within me that we could just get through the first 30 days. I think when Day 30 hit, I finally took my first post-partum breath. It felt like the oceans receded (proceeded? Words are hard) after being held back for a month…like all of the tension flew out of my body with that breath, and I finally, finally, could rest.

I didn’t, of course—hello, sleep training!—but I knew that I COULD, and that made a huge difference. After 30 days, I think I finally went from handling motherhood like a Swarovski crystal spider-web, and began to actually embrace that this really was my life now…he was ours, and he was everything I prayed for. The reality of the answer to years of prayers was staring me in the face, and he wasn’t going away. He was real…my precious boy…and I could truly, sincerely be happy.

After that first 30 days, through the spring and summer, I began to struggle with the “we nevers.” Jericho would have a milestone moment, and I’d think, “We never got to see Hannah do that.” I tried to turn it off, tried to celebrate what was happening, but the thoughts would creep back…”He giggled…I never got to hear her laugh.” “David, he flipped over…we never got to see Hannah do that.”

At one point, I dreamt that Jericho was lying on my bed, and a little red-haired girl was sitting there with him. Even now, as I type this, I can feel the tears at the back of my eyelids…that image was so, so powerful, as was the sentiment with it: “I will never, in this life, have a picture of my children together. What has happened to us? We will never be a normal family.” I woke up from that dream absolutely hysterical…I was deeply, deeply grieved. I can remember that intensity as if I’d dreamt it last night. Family pictures with one boy, one girl? They are still hard for me to see, even amongst friends…You just never have that sense of completion. You learn to accept it, to view it as your “normal,” but as a parent? You will always recognize that missing person in your family picture.

Anyway, the first year with Jericho was tough, as it is for all parents: You’re learning how to be a mom, learning how to juggle a full work-week, and finding trustworthy childcare. I had further complications that first year; my heart still wasn’t functioning correctly, my gall bladder required 2 different surgeries to remove, and my recovery post-C-section caused scar tissue to develop that would later result in a full hysterectomy just one year after having my son.

However, one of the greatest joys of that year was how often David & I would look at each other, or look at Jericho, and just know how great was the love of Jesus? How amazing was it that this tiny little person came about because of healing, grace, and love? We could look at this child and see tangible evidence that when you have a dream in your heart, and you know beyond the shadow of a doubt that God is NOT finished with you, despite what modern healthcare says– He can make miracles happen!  We could look at this child and know that you cannot accept the things men say, when you hear in your spirit the things God says!!  My son is nothing short of a breathing miracle, and frankly, I am, too. He has that legacy—that legacy of prayer, of hope, of determination. There is nothing in this world I am more grateful for, except my husband and my salvation.

Yep—I’m officially crying now. Jesus, I am so thankful! You can’t know how my heart blows up at just writing these words…I am grateful, with every cell of my body.

Even as I write this, though, I come back to how this blog started, with that quote from 2013: “Hello, Autumn—you remind me again of what is lost, even in the midst of great, wonderful, amazing gain…”

The spring and summer of 2013 were full of new-mom fog, surgery, work, etc. We were just trying to get our feet back under us to charge ahead on our new life together as a Party of 3. But then….

Then came Autumn.

And then came The Hardest Part.

When I went into Missouri Baptist Hospital in October, 2006, the fall leaves were still on the trees. My room overlooked the highway, so I really didn’t get a good handle on watching the season change to winter; when I left my hospital room in November, 2006, winter had come, and the world was bare.  I missed the entire season in a 4-week span, and we brought our little girl home the week before Thanksgiving. By the day after Thanksgiving, she was in a coma, and then she was gone…we buried her on December 1st, the day after one of the worst ice storms Missouri has ever seen. The sun shone, and the world was crystallized for my winter princess.  I’ve never forgotten the beauty of the day my child was buried…it was like the Lord decided to cover the trees in diamonds in her honor. It was stunning, even in the darkness of our grief.

But that year, 2006, I missed the fall. So when the leaves turned in 2007, something hit my heart, and I could only think of that Fall I Had Missed…and every year, I am reminded as such.

In 2013, the reminders came as I was looking into the eyes of my son…my miracle boy…and I was so totally conflicted in ways I hadn’t realized were possible. I had so much, but had lost so much, and the season reminded me of all of it, combined with gutting guilt. HOW dare I mourn, when I had so much to be thankful for?

How could I not, when that world was staring me in the face every day I walked out of my door?

I found myself not necessarily regressing in my grieving process, but really struggling with the dichotomy of grief and gratitude. And I’m writing this not to say that I have ever found an answer to that conflict, but to say that every year, I’m reminded of Hannah’s precious life in so many stronger ways than in my usual daily thoughts.

There is no season like Autumn, in all of its symbolism and glory…it’s a season of death, but a season where colors come alive….where we breath in the dust of the trees as they make their fiery curtain call for the year. It’s a season of living at bonfires and parks, a season where photographers revel in making memories, and where families gather to celebrate all things together…

We know death is coming…that winter is coming…but there is no day like today, and today, we celebrate the abundance of the harvest.  Are we near-sighted, to not hunker down and prepare for the winter? Or do we understand the breath/breadth of life, and own the day with its undeniable charm?

We cram our calendars with activities to take in every moment. That first year? We did it all. And we did the second year, and the third, and I’m getting ready to do it all again in the fourth year with our Rico-Bean. We celebrate the Fall, and we run ourselves ragged with the memories we make…and we make no apologies. I celebrate the Fall season with my little guy, and I never let on that I am internally fighting the conflict of that grief and that gratitude.

And I realize through it all, that there is no “conflict.”

There is only cohabitation.

I miss my little girl. Fall reminds me of her birth, of her death, and of the 29 days we had between…of the crunching of the leaves as I walked into the hospital, and the Christmas decorations as we came out…of that first day home from the hospital with her in our arms…and of the last day, where home was a place I never wanted to go back to…I wish I could separate her birth and her death, but her death came so quickly that I simply cannot. It all happened in the same season…this season…and every day is a reminder…

But every day is also a gift.

Every day, I look at Jericho and marvel at who he is, who he was born as, and what possibilities are to come…Every day, I am so grateful, and so genuinely happy. Every day, I praise God that I get to be that boy’s mother…Every. Single. Day.

This fall, we have adventures planned…it’s his first year in Pre-K, so there are school events (field trips!), fall festivals, our annual events with Parents-As-Teachers, and my favorite, Halloween!!!!!!!! This year, he’s going as Harry Potter for at least one event (he wears glasses, so it’s perfect!).  We celebrate this season; don’t be surprised to see me in my Uggs with my leggings and some S’mores, cradling a Pumpkin Spice Latte in my monogrammed fleece jacket,  as a shining example of Suburban White Chick Bliss (that’s an entire other blog).

Image result for pumpkin spice latte meme

I love this season. I love that it has multiple meanings, deep significance, and a beautiful, melancholy soul. I love the constant reminders of grace, which hovers over the grief and the gratitude. Grace envelopes both feelings, and makes them walk side-by-side instead of in mental conflict.

Grace is how we had our Hannah…how we said goodbye…and ultimately, how we will say “hello,” again…

Grace is how we had our Jericho…how we said “hello” for the very first time…and how we embrace each new day and sleep peacefully each night.

Grace is what brought David & I together in this crazy world—two kids with no idea of what was to come, and no idea how to engage on this life or on this journey—

Grace is what keeps us together, and is what pulls us through the tough times. It pushes us constantly toward the Father Who bestows it in abundance, and works in us independently to keep us engaged…to keep us from throwing up our hands and breaking our hearts in this process.

Grace is what binds our hearts, and binds our hearts to each other.

And Grace is what leads us home…

There is a beautiful loss in the season of Autumn, but it is part of the journey to a beautiful rebirth…and we are constantly on that journey, surrounded by grace, with eternity in our hearts….<3

Ecclesiastes 3:11 “He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.

Image result for he has made everything beautiful in it's time