Kit’s Heart

She looked perfect to me on the ultrasound. Kicking, rolling, a pearly line of spine, the little profile so like her sisters. After the two-hour echocardiogram, we were sent to a fluorescent lit, little-girl purple consultation room. Note to parents—you don’t ever want to be sent to a consultation room. It’s basically a place for you to cry loud enough for your sobs not to be overheard by other patients. The cardiologist showed us pictures, explained all the medical terms that are beyond my poetry degree, and gave us a name for Kit’s messed up little heart—Tetralogy of Fallot with Pulmonary Atresia (TOF/PA).

In medical terms, her heart has a lot going on that is not so good. The pulmonary valve did not form or does not open, there’s a hole between the pumping chambers, branch pulmonary arteries are very small, and collateral vessels take blood to the lungs.

What this means for Kit is that after birth (an induction at 39 weeks), she’ll be whisked away to the ICU, started on medicine to keep blood flowing to her lungs; then an echocardiogram, and possibly a cardiac catheterization. She’ll possibly need a shunt in her heart, multiple surgeries, and we expect to be in the hospital for nearly a month. Long term, we’re looking at more surgeries and possible developmental delays. There might be a chromosomal disorder that caused it, but we haven’t gotten those results back.

In every single one of these appointments, this long horrible week, I found myself asking that question I’m sure you aren’t supposed to ask—what are her chances? Will she die? It takes all the bravery I have in me to ask that question. They can’t tell me, at least not yet. It all depends. It depends on how her collaterals develop, how she grows, what is really going on in her heart. There’s nothing I can do to help her; I can only pray.

Changing Diana into her pajamas tonight, I ran my hand over her perfect little stomach, touched over her perfect heart. It is a miracle that any baby is born, that any baby’s little heart formed the way it should from a jumble of cells. Bryan reminds me that God is knitting Kit together in my womb, and my initial thought is that he has done a pretty crappy job at it this go around. And the thought of carrying a baby through 39 weeks—they say her chances of making it to delivery are excellent—to give birth to her so that she can die…this is hard. But even if she only lives a week, those months of pregnancy are worth it. Even if only a day, or an hour, or only long enough for me to glimpse her perfectly beautiful face.

I know that there are high chances we won’t get to keep this fifth baby girl, but I want Kit more than I’ve ever wanted anything in my life. I want her to live to run around my house naked during a diaper change and to say Da-Da first instead of Mom and to wear clothes four times passed down from older sisters. I want to hear her laugh. I want to hear her cry.

Please pray for baby Kit—pray that her heart develops, especially the collateral arteries. Pray that she grows, that the doctors and surgeons are wise and skilled. Pray for Bryan and me as we navigate this new ground; pray for us to keep faith, to not give up hope for our little girl. God is knitting her together, and He doesn’t make mistakes. He makes masterpieces.

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Kathleen Felicity

My mother came over to the house early that day to watch our two younger girls while my husband and I and our two older girls headed to my OB appointment. Between the girls in the backseat we had a stack of mini-cupcakes, white frosting, waiting for either blue or pink sprinkles—we planned to let the girls decorate them according to the gender, then to stop by Bryan’s work to announce to his coworkers.

The bets were leaning heavily toward boy, though personally we thought girl, and we were excited either way. We had a short wait in the waiting room, the girls playing with their dollies they brought along—June’s was wearing a pink outfit but she packed a blue one in case our baby was a boy—and they fidgeted during the ultrasound, asking “what’s that” as much as I asked “how does the growth look?”. I always get nervous about anatomy ultrasounds. We had never had a miscarriage or any problems with pregnancy or any of our children, but I know enough people who had to make me nervous.

The ultrasound tech said they were behind and was obviously getting frustrated with the baby—a girl, she was almost certain, but couldn’t tell—who was curled up, high in the womb, and wasn’t cooperating. Eventually she said it was the best we would get and we’d have to come back, then rushed us out of the room almost before I had my pants on.  Disappointing, sure, but not all nurses are created equal, so we shrugged it off and I went to wait for the doctor’s hi-how-are-you quick check in while Bryan took the girls back to the waiting room.

My doctor sat down with her laptop pulled up and told me she had concerns, that the baby was only 5th percentile in size and wasn’t growing. They saw cysts in the kidneys, a problem with the heart, and couldn’t see the gender. She expects the baby to not make it to delivery, or, at best, to be born with severe complications, maybe Downs, maybe another chromosomal disorder. I looked at her for a minute while she hands me a box of tissues, then told her I just couldn’t understand, I’ve had no cramping, no bleeding, I’ve felt movement, every appointment has been perfect and we have no history, so how can this be possible? She said it just happens, and some parents abort with this diagnosis.

I don’t remember exactly what I said after that—I think I asked the same questions again and again, trying to absorb what she was saying, and asking silly questions like “am I just too old?” (no), and she suggested that I get my family in there so she can explain it to them too. The girls are too little to totally understand, but they understood their mother crying, and Bryan was just as shocked as I was. My doctor is not an uncompassionate person—she hugged me, told me how sorry she was, and said she would make sure to get us in with the special ultrasound techs in the same building as soon as possible.

About an hour later, I was in a chilly room, watching the ultrasound tech scan over my belly, looking at the baby’s hands, feet, legs. She is a girl for sure, she tells me, and shows me the fingers on each hand, her lips and nose, which looks just like her sisters. I can’t help but think how torturous this is, looking at this baby who looks just perfect to me, who looks so much like all my other babies, knowing that this might be the last time I look at her moving.

Two doctors come in, also do the ultrasound, murmuring to each other where I just can’t quite hear what they are saying. They tell me the size is not an issue, the first ultrasound tech was wrong—she is right on the correct growth curve—and that is a huge relief. What they thought were cysts is actually urine building up in one kidney because the kidney isn’t draining. That sounds awful to me, but the doctors say that as long as one kidney works, they are not overly concerned.

The problem is the heart. It is tilted and they can’t get a good look as to why. Maybe a mass, maybe switched ventricles, maybe a chromosomal disorder. “Your kiddo is too wiggly for us to get a good look” they say, and when they ask if we have any questions there are too many for us to even ask. I finally ask if the kidney will explode since it is building up (nope), and if they think the baby will die. I can’t get that second question out without crying again, but they are good doctors and look at me with what I think may be real sympathy. They tell me they can’t know yet, but we’ll do many more tests.

So now we are waiting for a phonecall to schedule a day of testing—withdrawing amniotic fluid to double check for chromosomal disorders, an echocardiogram, meeting with heart surgeons, looking at the NICU. The doctors seem to think we should expect a c-section followed by immediate heart surgery, but we don’t know anything for certain yet.

I spent most of Friday crying, and begging everyone we know or have known for prayer; Saturday we had a snow storm, leaving us stranded at home in the best possible way, with a day of rest, prayer, and envisioning what the future may hold.

We named the baby Kathleen Felicity, which means “pure happiness”, and we plan to call her “Kit”. We wanted her to have a name so people can pray for her specifically. I was hoping for another girl; I love having girls. Before the ultrasound, I’d cleared out a spot in the closet and put in an empty dresser for her tiny clothes, even hung up some baptism gowns we’d used for the other girls. Each time she kicks, I say a prayer; I haven’t given up hope for her.

2019 Reading List

This year I read 100 books! This beats my reading last year by almost 40 books. I know why– the readalouds. I’ve always readaloud to my girls, but this year we had a lot of transition (moving 2x, once to a new state!) and so I really readaloud a lot.

Here’s the breakdown of my (almost) 100 books:

  • Around 45 of these were read-alouds to my children (children’s novels, like Wizard of Oz and The Borrowers)
  • Around 12 were poetry books (one of which a lengthy anthology)
  • Around 40 were nonfiction (on Christian Living / Theology, Writing, and Various Topics)

I didn’t read ONE single novel for myself last year–all my fiction was for the kids. I love children’s fiction–Roald Dahl’s Danny Champion of the World is probably one of my favorite books ever, for children or any human being–but for the same reasons I read fiction to the children–for enjoyment, teaching character, working through situations–I probably should read at least a little bit of it for myself.

Last year I attempted the Challies Challenge and failed–it was geared toward theological reading (which I do a lot of) but didn’t have much room for whimsical reading on topics various and wide (like I tend to do–grab whatever catches my fancy in the new-reads section of the library).

This year I decided to come up with my own booklist. Assuming I will read 100 books next year, I’m allotting a space for:

  • 40 readalouds
  • 20 poetry books

I’m not going to make a list of which poetry books/ readalouds I plan to read because I like to read what catches my eye there (and also whats in our homeschool curriculum).

For the other 45, I plan to read more books on poetry craft, much more fiction, and a few select Christian Living books (cutting back on my random nonfiction / random christian nonfiction)

Booklist:

(Christian Living)

  1. You Who by Rachel Jankovic
  2. Made for More by Hannah Anderson
  3. Steady Days by Jamie C Martin
  4. Table for 8 by Megan Francis
  5. Eve in Exile by Rebekah Merkle

(Writing Craft Books)

  1. Nine Gates by Hirshfield
  2. The Cure of Poetry by Kinzie
  3. Your First Novel by Rittenburg
  4. Poetic Meter and Poetic Form by Fussell
  5. Poetry in Person by Neubauer
  6. The Art of Syntax by Ellen Bryant Voigt
  7. The Triggering Town by Richard Hugo
  8. The Art of the Poetic Line by James Logenbach
  9. The Art of Recklessness by Dean Young
  10. Bird by Bird by Anne Lamott
  11. Rules for the Dance by Mary Oliver
  12. Letters to a Young Poet by Rilke
  13. Real Sofistikashun by Tony Hoagland
  14. Ordering the Storm by Susan Grimm
  15. A Little Book on Form by Robert Hass

(Fiction)

  1. Anna Karenina by Leo Tolstoy
  2. The Awakening of Miss Prim by Natalia Fennorella
  3. True Grit by Charles Portis
  4. Cranford by Elizabeth Gaskell
  5. Hannah Coulter by Wendell Berry
  6. Kristin Lavransdatter by Sigrid Undset
  7. Bleak House by Charles Dickins
  8. Cheaper by the Dozen by Frank Gilbreth
  9. My Cousin Rachel by Daphne de Maurier
  10. Austerlitz by W. G. Sewald
  11. Atonement by Ian McEwan
  12. The Hours by Michael Cunningham
  13. Beloved by Toni Morrison
  14. The Inn at the Edge of the World by Alice Thomas Ellis
  15. The Edge of Sadness by Edwin O’Connor
  16. Delta Wedding by Eudora Welty
  17. A Month in the Country by J.L Carr
  18. Gaudy Nights by Dorothy Sayers
  19. Song of the Lark by Willa Cather
  20. The Screwtape Letters by C. S. Lewis

 

I don’t expect I’ll finish this list this year, but I’m going to try! I feel like this list is more purposeful for me than the Challies Challenge–these are books I Actually Want To Read but haven’t for one reason or another.

What are you reading this year?