Thursday, September 20, 2012

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??

Wednesday, September 5, 2012

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.

Saturday, September 1, 2012

Time to go.

Big news today. Big. Ready for it?  We. Are. Going. Home.  Next week! On Thursday!  (This is, of course, barring any major disasters such as failure to gain weight between now and then.)  

Here's how this all came to pass.  A couple days ago, we found out there was an opening in the Level 2 nursery (in Sick Baby Land, a Level 2 nursery is between the newborn nursery and the NICU, which is Level 3).  Bonnie's been a Level 2 baby for awhile now, even though she's been in the NICU the whole time.  She's not critically ill and doesn't even have an IV anymore.  Just learning to eat and get off some drugs.  Anyway, a space came open in Level 2 and there was some discussion about whether it would be a good idea to move Bonnie there.  I've never been there to see for myself, but I hear it's quieter and more roomy.  Indeed, there has been a lot of hustle and bustle in Bonnie's little corner of the unit lately, and the prospect of a quieter space was appealing.

So. That day we had a discussion with Dr. J (love her) about whether moving to Level 2 would be a good plan.  The sticking point was that if Bonnie ends up needing a G tube, she would likely have to go back to the NICU following that surgery (might still be on the ventilator for awhile post-op).  Going to Level 2, only to go back to NICU a few days later, didn't seem worth it.

So *then* we had a very long talk about going home with a G tube (requires surgery but more stable) versus an NG tube (no surgery but somewhat more risky).  I won't get into all of it, but Jonathan and I have pretty strong feelings about giving Bonnie a chance to learn to eat before we offer her up to the surgeon yet again.  Everyone agrees that babies do better at home than in the hospital, especially when they get to be a little older (like Bonnie) and are aware of everything going on around them.  It's overstimulating.  All kinds of alarms going off, people bustling all around, getting woken up and messed with *all day long*.  Anyway, we want to give her a fair shot at learning to eat, and we want her to do it in an optimal environment.

Dr. J called up the surgeon, and she must have caught him in a charitable mood, because he said that he'd be willing to send her home with either an NG or a G tube.  So what *that* meant was that if we went the NG route, the only thing standing between Bonnie and sweet sweet freedom was getting off her Ativan.  Well.  She's on track to have her last dose of Ativan tomorrow (Sunday) night.  Then they want to watch her for a couple days to make sure she does okay without it.  They also want to make sure she's gaining weight.

The long-term plan is to go home with the NG and give her the month of September to learn to eat by mouth.  If that doesn't happen, we'll come back to Charleston for a G tube.  Obviously I hope it doesn't come to that, but if it does, at least I'll know we gave her a chance.

The Bonnie update is that she's still not interested in eating by mouth really at all.  In fact, the past couple times we've tried, she gets *really* ticked off about it.  We're giving her a break for a couple days to reset and will try again on Monday.  She had another swallow study yesterday, which showed that she has gotten better about protecting her airway when she swallows.  Hopefully we'll be able to stop thickening her milk, because her speech therapists feels like that little bit of extra texture is contributing to her gagging, which then contributes to her not wanting to suck from a bottle.

I think I'm still in shock about going home in a few days.  I'm thrilled, but there is a *lot* to do between now and then.  We've been living three hours from home for close to three months now, so we have a lot to pack up.  Also a lot of follow up appointments to set up, training to receive, equipment to learn, etc.  Please pray for what's left of my mental and emotional faculties to get through these next few days.  And please pray that everything goes according to plan and that we can take our sweet girl home on Thursday.

Some pictures, of course:
I love this picture.  That's my dad holding her. 

Yet more cuteness.
Sleepy girl rocking the leggings.

Up to no good.

Here's one for the occupational therapists in the crowd--she's figured out how to get her hands to her mouth.  Big deal for her future eating endeavors (desensitizing her gag reflex).

And a couple funny (to me) things, to be filed under "Time to Go."  Apart from my subjective feeling of losing my mind, here are two incidents which illustrate that we have been here long enough.  First, one of the unit secretaries had some sort of foot surgery when Bonnie was a few weeks old.  She's been out of work for quite awhile.  I saw her yesterday in the NICU and she said, "Why are you guys back?"  My response: "We're not *back*. We never left."  
Second, Jonathan and I were talking about maybe painting our TV room at home and were going back and forth on whether to paint the brick fireplace.  I'm going on and on about how once you paint over brick you can never go back (you know, because now there's paint on it).  He gives me a funny look and says, "Les. It's already painted. It's the same color as the walls."  
Me: "No it's not."  
Him: "It is. It's white."  
Me: "Noooo it's not."  
Him: <produces a picture of said brick fireplace which is indeed the same color as the walls, and has been since we moved in three years ago>  
Me: "Oh."  
Him: "You need to go home."