A Year Ago Today

A year ago today, when I was 21 weeks pregnant, Jonathan and I got the news that our baby girl would be born with a diaphragmatic hernia.

It was a Thursday.  The anatomy scan was scheduled for the afternoon.  Earlier in the day, an article on the bulletin board at work caught my eye.  It was an interview with one of the pediatric cardiologists and it was about hypoplastic left heart syndrome (HLHS). I don't know much about this condition, other than it is one of the most severe congenital heart defects there are. Basically these babies are born with only half a heart and have to undergo several repair surgeries to correct it.  The point of this article I was reading is that 25 years ago, HLHS was always fatal.  It's still an incredibly serious heart defect, but at least there's a treatment.

Reading that article prior to my anatomy scan, I remember thinking, "Wow, wouldn't that be terrible? So glad my baby doesn't have *that*."  The irony just about kills me.  I was soooo sure that nothing could possibly be wrong with my baby.

I had lunch with my friend, coworker, and "roommate" (we share an office) Sarah that day.  It was her son's 5th birthday, so we talked about how fast he was growing up and what kind of birthday celebration he would have.  I told her about the article I'd read on HLHS and how glad I was that my baby didn't have it.  Looking back, what was I thinking?  She *might* have. She easily could have.

After lunch I met up with Jonathan at the OB office.  That appointment is documented here, which is the first post of this blog.  It's when our as-yet-unnamed little girl was diagnosed with a congenital diaphragmatic hernia.  The OB doc, who was very nice but clearly knew very little about CDH, set up our appointment with maternal fetal medicine for the next day and told me not to "lose sleep" over this.  I vaguely remembered hearing about CDH in nursing school, but had no idea how serious it could be.

I'm a member of Ravelry, which is an online knitting/crocheting community that has lots of groups and forums on various topics...including a "Due in June 2012" group.  This is what I posted there on February 2, 2012 following that fateful OB visit:

Sooo, we’ll know more tomorrow after seeing The Specialist, but at the moment it looks like baby girl has a diaphragmatic hernia. Instead of her stomach being below the diaphragm, it’s above. Wouldn’t be a problem except that it can cause crowding of the lungs (and heart too, but apparently it’s the lungs we’re more worried about) and cause them to not develop properly. The good news is that we’re finding this out now and not after delivery. The bad news is, little bit is likely going to have surgery soon after birth to fix this. And may end up being a preemie, if more bowel gets up in the thoracic cavity and causes the lungs to get too smushed…might have to deliver early so she can have surgery sooner.
We’re seeing maternal fetal medicine tomorrow at 8:00, which involves some kind of high tech ultrasound, plus we’ll be talking to a genetic counselor. 
So, if you’re the praying type, or even if you’re not, please keep our little family in your thoughts/prayers over the next few weeks. Thanks :)

I have to laugh a little at my innocence (ignorance) here.  My main concern at the time was apparently that she'd have to have a repair surgery.  I hadn't yet even Googled "congenital diaphragmatic hernia."  No concept of the months-long hospital stays, the extended time on the ventilator, the ECMO complications, the narcotic weaning, the feeding issues.  Y'all.  Ignorance is bliss.  Not that I was blissful, but if I had found out all that CDH entails on that first day, I think my head would've exploded.  God was protecting me.

There is so much I could say about God's grace and peace and provision over the last year, but a picture's worth a thousand words.

Through many dangers, toils, and snares
I have already come
'Tis Grace that brought me safe thus far
And Grace will lead me home

Amen. Thank you all for your faithful prayers and positive thoughts for our sweet Bonnie.

How's that baby doing?

You know how when you're supposed to call someone back, and for whatever reason you don't do it right away, you keep putting it off because now it's been too long and it'll be awkward...and so you wait even longer, and it keeps getting more and more awkward?   Or maybe that's just me. I'm not a big phone person.  Anyway, that's my attempt at a little analogy on why it's been so long since I've blogged.  The longer I go without blogging, the more I'll have to write about and the longer it'll take.  And heck, I've got two kids (at home) now. I don't have time!  So I put it off for when I do have time...and by then there's even more to write about.  You get the point.

So I might as well just jump on in with a little bulleted list, which I will attempt to keep in some semblance of chronological order.

• After her G tube surgery and Nissen fundoplication, Bonnie's life changed in a big way for the better.  The 8 to 12 times a day of projectile vomiting was over.  (Until you've experienced that with your own baby, it's hard to understand how terrible it is.)  She still gags some and can throw up a little bit despite the Nissen, but it's a thousand times better than it was.  Yay for Dr. Surgeon!
• She started occupational therapy in October to work on feeding and slowing down her breathing (chick breathes about 80 times/minute when she's just hanging out).  Occupational therapists are a pretty neat bunch of folks.  Some of their techniques seem a little like voodoo to me, but hey, we're getting results.  Actually, she's still not eating, but after an OT session that involved what appeared to be the therapist just putting her hand on Bonnie's belly in various places for a minute or so at a time, the next day she started vocalizing waaaay more than she ever had before.  So I'm a believer.  Bring on the OT voodoo.
• Halloween!  This was more or less a non-event for Bonnie, but we pushed her around in the stroller while Henry went to about four houses in his super cute dragon costume.

• I went back to work the beginning of November.  It was a glorious day.  Even though Bonnie had been home for two months by that point, going back to work was the beginning of normalcy for me. 
• We've got a nanny who comes to the house to take care of Bonnie.  She has many years of childcare experience, and she does a great job.  I have absolutely no worries when I leave Bonnie with her.  (Found her on www.care.com, for all you inquiring minds.)  Henry still goes to daycare because he loves it, and because Bonnie's pretty much quarantined until April, so it didn't seem fair to keep Henry homebound for that whole time too.  
• Bonnie had her portrait done.  A beautiful CDH survivor named Laycee, who had a stroke while on ECMO, draws these pictures of folks in her own unique style.  We got one done of Bonnie, and I loooove it.  So does she.

• Thanksgiving!  We gave thanks for our miracle baby.  Didn't travel this year because I had no time off, but Jonathan made an amazing Thanksgiving dinner for us.  

• Please notice the progression of chubbiness here.  Once she quit throwing up half her food, she started gaining some serious weight.  Her cheeks absolutely own me.  So much face to love and kiss and squish.  (Funny little side note.  See those little spit bubbles in her mouth?  Whenever Bonnie does this, Henry says, "She's bubblin' up!!!" No idea where he got that, but it's cute as heck.)

• Random illness.  Bonnie ended up with a UTI (urinary tract infection) following a few days of fever, diarrhea, and generally not feeling well.  When babies get UTI's, they usually end up with further testing to make sure there's no kidney reflux (not the actual medical term, but it basically means urine flowing in the wrong direction, which can introduce bacteria from the outside into the bladder/kidneys...which isn't good).  Bonnie had said testing and they found grade 1 reflux (the mildest) on the left.  I'm pretty sure in most cases they wouldn't bother to treat such mild reflux, but because she has a history of renal failure, the nephrologist (kidney doc) thought it'd be a good idea to treat, just in case.  The treatment is prophylactic antibiotics to keep her from getting another UTI.  That means a low dose antibiotic every single day.  They'll check again for reflux in about a year, so hopefully she'll have outgrown it by then and can come off the antibiotic.
• Brother and sister.  Henry loves the heck out of Bonnie.  He always wants to touch her and talk to her, and if she's crying, he'll say, "It's okay Bonnie. We love you."  She is in love with him as well.  She lights up when he comes close and reaches for his face.

• Christmas!  We went to East Tennessee to celebrate with my family.  Henry was super excited about Santa, who brought him a grill (like those little play kitchens, but more manly, or something).  Bonnie had no idea what was going on, but smiled at everybody :)  One of the highlights of this trip for me was seeing Bonnie with her cousin Molly, who is a couple months older than her.  Such cuteness with the baby girls.

And here are a few more pictures from Christmas.

On one of Bonnie's darker ECMO days, I remember praying over these sweet little feet.  Funny how your mind works in moments like that, but what I wanted was for her to grow up to see how those little feet would turn out--like mine (cute...of course) or Jonathan's (cute on a boy, somewhat unfortunate for a girl).  So far it looks like she's in luck :)

• Assorted cuteness.

• General growth and development.  A couple weeks ago, Bonnie learned to sit up by herself.  Big round of applause for that, please.  She was 6 1/2 months old.  Henry didn't sit by himself until 7 months.  Take that, 91 day NICU stay.  She's very social and laid back, sleeps great, and doesn't mind long car trips.  Still not eating by mouth, and no babbling yet...but hey, that's what early intervention (i.e. therapies and such) is for.

So there you have it.  You might be wondering what inspired this blog post tonight, and the answer is that two really nice Bonnie-related things happened to me today*.  That got me thinking about all the niceness that was lavished on us while I was pregnant with Bonnie and through her NICU stay and beyond.  So this mega-post is sort of a thank you for following Bonnie's journey and for blessing us with your prayers and encouragement.  

*The aforementioned Nice Things were these.  First--this morning I got a phone call from a local photographer informing me that our family had been nominated by "someone who wants to remain anonymous" for a free 30 minute photo session.  So so nice.  Second--I had a customer service experience that probably warrants a raise for the person involved.  Big thank you to Jason from Equipped for Life.  He will never ever read this blog, but I'm thanking him anyway. :)

Surgery Day!

Short version:  Bonnie's surgery went well, and she is now the proud owner of a G tube.  She is also sporting a Nissen fundoplication (not sure if this is something one can "sport", but whatever).  

Long version:  At 3:00 a.m. today, I noted with glee that this would be Bonnie's last feeding via NG tube.  At 7:00 a.m., she got some Pedialyte through her NG, but since it wasn't formula, I'm sticking with my glee from 3 a.m.

We got to the hospital at 10:00 a.m. for surgery scheduled at noon.  They gave Bonnie a baby-sized yellow hospital gown to wear.  It was really cute, but it came off about five minutes later because the pre-op area was about 86 degrees, and chick gets hot really easily.

Bonnie and the yellow gown.  And maybe a gang sign.  We'll have to have a chat about that. 

Dr. Surgeon came to talk to us about his plans.  He said he'd been doing a lot of thinking today about what would be best for Bonnie.  Asked if her reflux seemed to still be bothering her (yes) and if she was still throwing up (yes--averaging 7-8 times/day lately, which is actually an improvement).  He said it's a little difficult to justify doing a Nissen (the anti-reflux procedure) when the baby is gaining weight, but that he believed it would make Bonnie feel a lot better and improve her quality of life.  The plan was to for sure do the G tube, and try to do it laparoscopically.  He would try to do the Nissen laparoscopically as well.  If he had to open her up to do the G tube, he'd go ahead and do the Nissen that way, but he wasn't going to open her up *just* to do the Nissen (though he offered to).  Got all that?

Right at noon, Mr. Anesthesia Guy came and toted Bonnie off.  He was a nice guy, and she seemed happy to go with him, so this part actually wasn't as traumatic as it could have been.

The first update was about an hour into the procedure.  All is going well.

Another hour later.  All is going well, still working on the Nissen.  We are "awhile" from being done.

Two hours after that.  The Nissen is done!  Now working on the G tube.

Half an hour later.  Dr. Surgeon comes out.  He looks exhausted.  Like perhaps my four month old daughter beat him up.  (He actually has what I believe to be a good healthy fear of Bonnie, from back in her NICU days when you better not mess with her too much or she'll pull some crazy stunt.  Prior to surgery today he said something about "treating her with respect."  Thaaaat's right.)  Anyway, I give him a lot of credit because he was not going to let her screwy anatomy defeat him.  The phrase, "it took me an hour to find her stomach" was uttered.  This wasn't a straightforward procedure.  Bonnie didn't make it easy on him (wouldn't have expected any less), but I'm grateful for a skilled surgeon who knew what to do with her.

After some serious miscommunication--which I would continue to be upset about it if would accomplish anything--we were finally (*finally*) reunited with Bonnie in the PICU (pediatric ICU).  She was asleep-ish, but squirmy and grimace-y and not very comfortable.  That's what happens when your guts are shuffled around for five hours, I guess.  She got a dose of morphine to help with the pain, which seemed to help quite a bit.  Despite all the tubes and wires, she looked beautiful.  See below for photographic evidence :)  We left a couple hours later, since we can't spend the night in the PICU.

Assuming no drama tonight, she'll move to a regular room tomorrow.  There's a possibility of going home on Thursday (in two days), but we shall see.

Thanks everybody for your prayers.  This surgery was at least as nerve-wracking as her hernia repair, maybe more so--probably because it took three times as long.  We are so grateful to God for giving us this precious baby and for continuing to hold her in His hand.  We love you, Bonnie.

And now, picture time!  These first few are from the night before surgery.

Here's one from this morning after her bath.  I was so excited to get that NG tube off her face!

And now, pictures from PICU (after surgery).

Pretty girl.

Snuggling with her blanket

Heading back to Charleston!

Just a quick update to let y'all know we're heading back to Charleston tomorrow for Bonnie's G tube surgery.  This will replace (what I've come to know as) that super annoying NG tube.  We had really high hopes that she would miraculously learn to eat by mouth once we left the NICU, but alas, that has not happened.  I'm convinced that at least part of the problem is that her formula tastes like poison.  She's on Neocate, which is what's known as an "elemental" formula because it's super super broken down.  Really.  If you read the ingredients, it goes like this: some form of carbohydrate, some form of fat, (then the biochemistry lesson begins) arginine, alanine, isoleucine, valine, etc etc etc.  Yeah.  Individual amino acids.  How could that possibly taste good?  Turns out it doesn't. (And if you remember this post about how I licked my child to find out if she was salty, it shouldn't surprise you that I tasted it.)  I feel sorry for Bonnie that that's her option of something to eat.  Poor gal.  So yeah, in addition to her gagging and weak suck, she is absolutely not a fan of Neocate.  All that to say, the G tube has become a necessity.  Much safer, more stable, less obvious.  The downside is that it requires surgery, which is what's happening on Tuesday.  

We would love it if you would pray with us for a safe and successful surgery.  Now that Bonnie's been home for a month, the thought of her going back to the hospital and having all the hospital "stuff" going on again (IV, pain meds, monitors) doesn't excite me.  

Here are a couple recent pictures :)

My sweet little nugget.

Heading to school on a rainy day.

Henry giving Bonnie a kiss.  They love each other.

Update from the home front.

Many apologies for not updating sooner to let you all know that we did indeed make it home (two weeks ago!?).  It is seriously crazy with two kids at home. I don't know how people do it.  Anyway.  Bonnie got discharged from the hospital two weeks ago today (still with the Thursday theme), just one day shy of her 3 month birthday.  I'd love to tell you that it was a great and magical day, and it was, but it was also really stressful and overwhelming--we had been living away from home for 3 months, so in addition to bringing a new baby home, we were essentially moving across the state.  It was a wild day.

So. Since we've been home, we've been getting to know Bonnie and her schedule.  Turns out she's a really good sleeper.  I have to get up 4-6 times a night (to turn her feeding pump on and then off an hour later, every three hours), but she sleeps pretty well through the night.

Except when her belly hurts.  Which seems to be quite a bit.  On her third day home I started keeping a log of her spitting up/vomiting and how it related to her feeding times, calorie content of her formula, etc. (I never claimed I wasn't a nerd.) After a couple days of feeling like we were torturing her every time we started one of her feedings (via NG tube), Jonathan and I pretty well lost our minds and called the surgeon to ask for an earlier appointment.  The original plan had been to work on feeding by mouth for the month of September, and then get a G tube if she couldn't kick the NG habit by then.  Well.  She's throwing up so much, and so gaggy and refluxy in general, that we're hardly able to work on oral feeding.  She's pretty unlikely to make her deadline, so we want to go ahead and get the surgery over with.

We bumped up her consult with the surgeon and had that appointment today.  In addition to talking about getting a G tube, we discussed an anti-reflux procedure called a Nissen fundoplication.  Reflux is annoying at best, but for Bonnie, it could be really dangerous.  With her paralyzed vocal cord (which is probably-but-possibly-not mostly better since her cry is decently loud), she's more likely to aspirate formula into her lungs, which could cause pneumonia.  Since her lungs aren't the best, pneumonia could easily land her in the hospital.  Also, since she's throwing up so much, she's not getting all the calories she needs.  For a girl who has spent a good chunk of her life not gaining weight, she has some catching up to do and needs all the calories she can get.  (The good news is that she's up a full pound since she was discharged two weeks ago. Yay Bonnie!)

For anyone interested, she's already on a couple reflux medications.  She's been on Prilosec for a few weeks now, which helps with her stomach pH (i.e. acidity).  I feel like the Prilosec is doing what it's supposed to do, so when she refluxes it doesn't *hurt*.  But she still feels it come up and it bothers her.  Once we got home, her pediatrician decided to try her on Reglan, which helps the stomach empty faster so that there's less to throw up.  That actually seemed to help for about two days, but then the throwing up came back in full force. Sad.

So.  Surgery is scheduled for October 9th.  She will for sure get a G tube, but the Nissen is questionable.  The surgeon feels that it might be too difficult to do since Bonnie is still so little.  He said ideally, she'd be about 20+ pounds, and she's currently not quite 11 pounds.  Please pray that the surgery will go exactly as God would have it.  There are some potential complications to the Nissen which make me nervous, but potential complications of the constant throwing up aren't so great either.

Here are some pictures of Bonnie's last day in the NICU, as well as a few from our first days at home.

Our favorite neonatologist (Dr. Jenkins!).  She took care of Bonnie while she was on ECMO, and she was back on service for Bonnie's last two weeks.

Bonnie and Karlayne, one of her wonderful primary nurses. We love her! 

Bonnie and Joan--ECMO nurse extraordinaire.  We love her too!

Bonnie and Courtenay, another one of her awesome primaries.

Not so sure about her carseat.

Loading her up in the car.  As soon as we took her outside (for the first time ever in her life) she fell asleep.  We were holding up traffic here getting this shot, but whatever.  Your baby only comes home from the NICU once.

Stopped at a gas station on the way home and took a little break from the carseat.

Henry is the sweetest big brother.  We've had a lot of this sort of thing since we got home.  He's leaning in to kiss her.

At home in her swing.

Big brother Henry on game day.  Seriously, could he be any cuter??

Last night in Charleston

As of now, we're still on for going home tomorrow.  Bonnie still isn't gaining weight very well, but we're going to let her pediatrician (in *Greenville*, i.e. home) worry about that.  She's currently getting fed over an hour, every three hours.  They wanted her feeds compressed to 30 minutes before we left, but we're going to work on that at home too.  Bonnie's going home with an apnea and heart monitor to be used just while her feeding is going in, in case her NG tube misfires (i.e. ends up in her lungs instead of her stomach).  We're also taking home a feeding pump, which looks like this.  I got trained on the new equipment (monitor and pump) today, and it hit me how much stuff we're bringing into the house, and how much of a production it's going to be to feed her. Holy cow.  We'll get a routine down pretty quickly I'm sure, but I think the first few days are going to be a little insane.

Also, I'm trying to remember that when Bonnie's home, I am her *mother*, not her *nurse*.  The Helms house isn't turning into a hospital.  I plan on enjoying having my child home and not letting her medical needs overwhelm us.  And really, she's not *that* medically complex.  She doesn't eat, and she's on three medications.  That's totally manageable.

Bonnie had another echo yesterday, because they discontinued her sildenafil (Viagra!), which was started back in the dark days of ECMO to help with her pulmonary hypertension.  They wanted to see how her heart looked without the medicine.  Turns out, it looks *great*.  No evidence of pulmonary hypertension.  Miracle.  Pulmonary hypertension was her ticket to ECMO back in the day.  It's a beast.  And it is *gone*.  Praise God.  Also, they checked her urine yesterday and found that it had blood and protein in it.  This is likely a lingering effect of when she was in kidney failure, but we'll follow up with the pediatric nephrologist to keep an eye on it.

Things are likely to be kind of crazy for the next few days, but I will update with homecoming pictures when I can.  Until then, here are some cute pictures of Bonnie enjoying her pacifier (formerly a rare event, but becoming more common--which is a good sign for future eating endeavors!).  Please pray for an uneventful (3+ hour) trip home tomorrow and a smooth first night back on the home front.