Tag Archives: penelope joy

On Choosing a Pediatrician

After I gave everyone a Sprout update the other day, I’ve had a few questions — particularly about how we chose our pediatrician. Let me tell you, it was a lot easier than I thought it would be.

You see, we started the search for a pediatrician one day back in September 2013 when the doctors and nurses started preparing us to take Penelope Joy home. “You’ll need to find a pediatrician right away,” they said. Because we hadn’t even started looking. Honestly — why would we? We were staring down the road of a very long hospital stay and hadn’t really thought we’d get to take Penelope Joy home any time soon. (Well … you all know how that turned out.)

Anyway …

We started by talking to the nurses and doctors. And then we went to our friends for recommendations. With all of the 24-hour care and amazing staff at the children’s hospital, we were spoiled. And not just any pediatrician would do.

Recommendations were as far as we got.

We had set up an initial meet-n-greet with a pediatrician, but Penelope Joy took a turn for the very-worst, so we canceled that appointment — promising to reschedule once Penelope Joy turned around.

That appointment never got rescheduled.

But, when it came time to pick a pediatrician for Sprout, the initial legwork was done. We had narrowed it down to two choices: one, an office very close to our house where my own OB was located; the other, a highly recommended pediatrics office about 20 minutes away from our house (whom I’d emailed back and forth while Penelope Joy was in the hospital).

The first choice wouldn’t allow us to set up a meeting before Sprout is born. When I asked what would happen if we chose that office but didn’t have a good relationship with the pediatrician, they told me we’d have to just pick another doctor. So, that choice was immediately out the window.

We set up a meeting with the second office — and, you know what? They remembered me. And they remembered Penelope Joy. She wasn’t even a patient there, and they knew her. What’s more, they asked if we’d like a personal one-on-one meeting with someone on their team instead of doing the traditional meet-n-greet that would include other expectant parents.  Because they knew our story was different and that we would have questions and feelings and concerns that were different. And, still, because even to this day, sometimes it’s hard to be in a room with other pregnant women and mothers of newborns.

When we did meet with the woman at the office, she was kind and understanding. And when I apologized (well in advance) that if we chose that office I might be a little needy at first due to our past experience, she smiled at me and said, “of course you would be, and we wouldn’t expect anything else.”

All of this aside, even if we had met with 100 pediatricians, we most likely would have chosen this office. Because they acknowledged something in Mr. B and me that 90 percent of people in our lives (doctors, family, friends) still don’t understand: we are not first-time parents.* Yes, our first trip around this track was very, very different than that of parents who walk away from the hospital with a baby.

And, no, we didn’t do the whole sleepless-nights-with-a-crying-newborn thing. But, we did do the no-sleep-for-38-days thing when we were waiting for the nurse on duty to call and tell us that, yep, we missed Penelope Joy’s last breath because she died while we were selfishly at home in our own bed.

And, no, we didn’t change diaper after diaper after diaper, wondering when she would finally stop crapping all over herself. But, we did stand by her side begging her bladder and kidneys to do something, anything. Praying to God for any amount of relief he (or she) could give to our precious, water-retaining baby.

And, no, I didn’t have middle-of-the-night feedings over and over and over again. But, I was up and pumping every three hours — my heart full of hope that one day I would get to give her that milk and give her something no one else could give her (even those doctors and nurses who were saving her life while I stood by and watched).

And, no, I didn’t stand by her crib every night with my hand under her nose praying she was still breathing — I had machines to tell me they were breathing for her. But, Mr. B and I did hold her as she took her very last breaths — knowing I’d never get to be the mom standing over a crib waiting for that next breath.

So, yeah, every time someone tells us “just you wait” or “well, this is your first time” or “one day you’ll understand” it burns. Really bad. And is still a painful reminder of everything we lost. The fact that our pediatrician recognized that we have been parents — we are parents — went a very long way in helping us decide where we’d take our precious Sprout.

*Please don’t think I believe this means Mr. B and I don’t have any learning to do. Because we do — a lot. A lot, a lot, actually. And we’ll be the first to tell you that we are clueless on many things. We’re nervous and anxious and scared — just like any new parents bringing their baby home from the hospital. (Holy cow, you guys, we get to bring our baby home!) But forgetting that we have, indeed, done this before also forgets that Penelope Joy existed — and that she made Mr. B a dad and me a mom.



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Today is 36+6.

I’m 36 weeks and six days pregnant. With Penelope Joy, this is the day she decided to make her grand entrance into the world. To say I’m having some “feelings” would be fairly accurate.

The Day She was Born

One of our very first family photos.

You see, when you’ve been through the experience Mr. B and I have been through, you can’t help but make mental notes about how things were — and how things are. And no matter how many times everybody tells me that every pregnancy is different — and no matter how many times Sprout makes that painfully clear — my mind can’t help but think about it.

Because Penelope Joy was early. And then she died.

Were these two things related? In a way, I suppose, but not directly. She died because of an extremely complicated anatomy that included no immune system. She didn’t die because she was premature. (Actually, I like to think that her date of death was always going to be Oct. 17 — and she wanted as much time with us as possible, so she made her appearance early. I like to think she made the choice and gifted us with the additional time.)

Besides, she wasn’t ridiculously premature. But, she was early enough. And I’ve been watching this day on the calendar since finding out I was pregnant with Sprout. This day is symbolic for me. Lots of moms count to 12 weeks. Or 27 weeks. Or 35 weeks. Me? I’ve been looking at 36+6 since day one. (Though, when they pushed back my estimated due date by a week early on, I had to adjust that date in my mind, too.)

So, today is a big day for me. For Sprout. In reality, it means nothing — because Sprout’s still in there movin’ and groovin’ and because she’s not even due for another 3 weeks (and a day).

Am I eager to meet her? Heck yes. Do I want more than anything to hold her — as long as I want, without tubes and cords and the assistance of a nurse (or two or three)? You betcha. Am I looking forward to bringing her home with us (scared and nervous as we’ll be) and actually getting to be her mom — the mom I so desperately want to be? Words cannot describe.

But, I also want her to stay where she’s safe as long as she needs to stay there. Even if it means I get asked over and over again: “Are you sure there’s just one in there?” “Wow! You must be ready to pop any day now, huh?” “How much more can she grow?”

36+6 photo

As I snapped this picture, Sprout kicked me pretty hard. I think she might take after her dad by being a little camera shy. Oh well. She’ll get over it. Mr. B did. Kind of.

There’s a reason pregnancies typically last around 40 weeks — every day of those 40 weeks is important. And I will never be one of those moms wishing my pregnancy were shorter — no matter how badly I want to meet Sprout. Besides, while medical advances are amazing and save so many babies, I’d prefer to keep Sprout right where she is until she’s all filled in with that adorable baby fat and her lungs are truly ready to take her first real breaths and her brain is ready to absorb the amazing world she’s about to meet. So, we wait … anxiously, eagerly, patiently.

And yes, on this momentous — but also pretty average — day, I’m having “feelings” of all sorts. Gratitude. Hope. Joy. Sadness. Exhaustion. Lots of exhaustion. Peace. And love. Always. love.


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Having One of ‘Those Days’

Today was one of those days. One of those really hard days. Where missing Penelope Joy feels so fresh. I don’t know why it was like that. I don’t know what made today different. What I do know is that there were several times when I caught myself thinking about her and missing her. Right in the middle of a meeting. And in the middle of working on a project. I even found myself driving home with tears in my eyes as I thought about our baby girl.

I’m sure it has a lot to do with what’s on the horizon.


Christmas was hard last year — nearly impossibly hard. This year, it’s hard in a different kind of way. We’ve settled into our grief and into our life without Penelope Joy. But there’s still a hole. And I can’t stop myself from thinking about how fun our little 15-month-old Pickle would have been — I mean, come on, that’s like the perfect age for Christmas and all its magical joy.

Maybe that’s what it is. Christmas is such a magical, happy time — or, at least, it should be — that so perfectly pairs with the magic of childhood. Don’t get me wrong: I do enjoy Christmas. And I don’t hold anyone’s happiness or joy or magical moments against them. And I think everyone should embrace those things in celebration of what this season is about. But, it makes missing Penelope Joy fresh again.

We’ve certainly found some ways to bring Penelope Joy — and her spirit — into our Christmas celebration. We have many special ornaments on our tree for her. We also buy presents from the Angel Tree for little girls who are around the age Penelope Joy would have been. These things do make her feel closer. (Learn more about how we remember Penelope Joy during the Christmas season.)

Special ornaments

Penelope Joy’s ornaments were some of the first we put on our tree. The angel baby with the star says “2013: A star is born.” The yellow star is our tree topper made by a special friend. The pickle … well … for our Pickle. (The top left ornament is from our first married Christmas together.)

Maternity Photos

After some discussion, we decided to have some maternity photos taken with Sprout. We had some done with Penelope Joy, and I loved love them. But it feels very weird. We’ll basically be having family pictures without our whole family there. I suppose it will always feel strange, knowing that part of our “us” is missing.


I cannot even begin to tell you the joy and excitement we have in our hearts as we await the arrival of our precious Sprout. (Just under two months to go!) It’s pretty much beyond words. And knowing that the doctors have told us our baby looks wonderfully healthy — no signs of any heart or other defects at this point — gives us even more reasons to celebrate.

But every part of this pregnancy has been tinted with what happened with Penelope Joy. And as we look forward with such joyful anticipation to Sprout’s arrival, we’re reminded of our precious Penelope Joy.

We finally unpacked the 14 boxes of Penelope Joy’s things. (You know, for a little girl who never got to come home, she sure had a ton of stuff!) So much of it we’ll get to hand down to Sprout — most of it brand-new, even. Can they really ever be hand-me-downs if they never were used by their original owner?

We spent a lot of time on Memory Lane while we were unpacking those boxes and getting Sprout’s nursery ready. We were reminded of what we missed out on — but also were reminded of the amazing gift we’re being given with Sprout as well. It’s a weird feeling — being sad but oh-so happy at the same time. But, as time goes on, I do get more and more used to those two contradicting emotions living side-by-side in me.

Sprout's nursery is a mix of some brand-new things just for her — and some special items that once belonged to Penelope Joy.

Sprout’s nursery is a mix of some brand-new things just for her — and some special items that once belonged to Penelope Joy.

So, there’s a lot going on. A lot to be overwhelmingly happy about. And some things to be sad about, too. That’s probably why today was one of the hard days. There’s a lot going on — and there’s a lot coming up. And mixed emotions (combined with pregnancy) can be exhausting. I know not every day is going to be hard — and not every hard day will be completely hard. I also know that it’s OK to have hard days and it’s OK to be sad. And I know that the sadness does not — in any way — diminish the joy in my heart about Sprout. Nor does that joy diminish my love for Penelope Joy.


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Spreading Awareness About CHDs

Fox 17 recently invited me to share Penelope’s story — my story. In case you missed it, I’d like to share it with you as well. 

View video.

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