Monday, September 28, 2015

Wait and See

We had another appointment with our cardiologist today, and it went well.

The cardiac team has decided on a "wait and see" plan for Helena.

She's growing, just not as quickly as they had hoped, but she is steadily putting on weight. She is still battling the cold (for realz, all the adults in the family are still battling the damn cold), and her cardiologist said it's actually a good sign that she's handling the cold so well. She's fighting it off on her own, which is showing how strong she is, so that's good news.

They're going to let her keep growing and see what happens. She's doing well right now so they don't want to rush into anything, and they're hoping in a few more months she'll have grown into her shunt and then they can put off surgery as long as possible.

The one thing we do need to work on is getting her to eat orally again. We've been doing dips, which means dipping her pacifier into her formula and putting it in her mouth while the NG tube feed is happening so she's getting some sort of oral stimulation, but she is still refusing the bottle and she's still not latching on to the bottle or the pacifier.

I've made an appointment with a speech therapist at our local hospital (NOT the hospital she had surgery at, with the stupid speech therapist we hated) and I'm hoping she can give me some guidance as to how to get Helena to eat orally again. She was up to half her feeds by mouth before the cold knocked her out, so I'm hoping we can make her relearn how to do that. So we'll see how that goes, I'm hoping it's a better experience than the one we had with the speech therapist earlier.

Other than that we're to keep doing what we're doing and let Helena take the lead and show us what she needs.

I'd also like to thank everyone once again. It's stupid and cliche, but it's also true - you really realize who truly cares about you when something bad happens in your life and the outpouring of love and support and prayers has been amazing and we appreciate all of it. Our eyes have been opened that some relationships aren't what we thought they were, but we've also realized how strong others really are. We have a long road ahead of us, and we're so grateful that we have all the love and support that we do going forward. So once again - thank you.

Despite all her troubles, she's a happy girl

Friday, September 18, 2015


We haven't had the best couple of weeks here.

What we thought was Helena's reflux acting up was actually a cold that she caught from My Big Guy (he also shared it with the entire family). The symptoms of reflux and a head cold are shockingly similar, and with the dire warnings the doctors and nurses gave us about Helena catching a cold we overlooked that possibility because she wasn't in that bad of shape. Luckily, we went to the hospital to get her stitches clipped and her cardiac nurse was all like, "No, that's totally a cold!" It was just good timing that I happened to make the appointment with them because her stitches happened to start peeking out. We would have just kept thinking it was the reflux.

The good news about the cold is that it explains her aversion to eating - she can't breathe while she's eating because her nose is so stuffed up. Once the cold clears up we're going to get back to trying to get her to take more food by mouth, but at least we have a real reason as to why she stopped her oral feeds. After getting some new meds and switching to Nutramigen the reflux seems to be doing much better, we just need to get the cold under control now. All her doctors and nurses agree that there's no point in trying to make her eat by mouth while she has the cold because again, she can't breathe while doing it.

We had a visit to the pediatrician who confirmed that the cold is just a cold and there's nothing we can do but let it run its course. Her lungs are clear and she's not running a fever so meds won't help with anything.

We also saw the cardiologist and learned that the shunt seems to be doing its job a little too well. Helena has too much bloodflow going through her heart right now. They put in a big shunt assuming that she'd grow into it rather quickly, but she's not growing as quickly as anyone would like so the shunt is still too big. As a result Helena has congestive heart failure.

Now, congestive heart failure is a horribly misleading name for what's going on. Her heart isn't failing. Basically what it means is that her heart is working too hard, which is is because it has too much blood flowing through it. The cardiologist and the surgeon and the whole cardiac team from our hospital met and discussed Helena and decided not to do anything right now, but to give her a little more time to grow into her shunt. If she grows into the shunt the heart failure will go away. In the meantime we've adjusted some of her meds to deal with the symptoms of the congestive heart failure and we're going to really try to get her to eat more. Her cardiologist said her heart functions all look great, again, it's just too much bloodflow going through it.

It's sort of horrible cycle again - her body is working so hard just to be alive that she's tearing through the calories she consumes so quickly that she's not gaining weight. But if we try to give her more food she's likely to puke it up, or it might cause her body to have to work more to digest more and burn even more calories. But she needs more calories to grow. We upped the volume of food a little, but we don't want to overwhelm or overwork her.

We go back to the cardiologist in two weeks and we'll see what he has to say about her then. Hopefully by then the cold will be gone and she'll have gained some serious weight.

Despite the setbacks Helena is still happy. She loves being snuggled, especially when there are butt pats involved. She has also developed a fondness for her playmat which her brothers love since they get to lay on the floor and "play" with her.

We're just taking it one day at a time, and hoping and praying for the best. Her doctors don't seem super concerned with the situation since they're giving her more time to let her body sort of work this out on its own, which we really like. Hopefully it does just that.

Tuesday, September 8, 2015

Tubie Troubles

When dealing with a sick baby, there are going to be highs and lows, good days and bad, and ups and downs.

We're currently dealing with more of a "down" situation in regards to Helena's eating. Her heart is fine, her cardiologist said she's doing well, but we're having some feeding issues.

Helena was on the NG tube, and we were doing great in increasing her oral feedings. She was taking almost half her feedings by mouth and doing well with it. Then reflux hit. She had all the classic, horrible reflux symptoms - gagging, coughing, spitting up, crying when we tried to orally feed and refusing the bottle. Since she needs to gain weight (her shunt is technically too big for her - they put it in assuming she'd grow into it so she needs to grow into it!), we just sort of stopped pressing the oral feeds rather than torture her (we knew it hurt her to eat by mouth) and did pretty much all NG feedings while we figured out new meds and a new formula (she's now on Nutramigen).

The reflux seems to be getting better, but Helena is still refusing any oral feedings. She's still gaining weight because we're using the NG tube, but she really needs to learn how to eat by mouth again.

We're working on it, but it's hard because she does still cough and gag when we try to use the bottle and it's so hard seeing that happen to her. I know it's awful for her too, but I also know she needs to wean off the NG tube and the longer we let her do just NG feedings the harder it will be.

We'd really rather tackle the issue ourselves after having a terrible experience with the speech therapist in the hospital. She only saw Helena three times and was dictating how she would eat. She claimed that Helena wouldn't/couldn't eat orally but that was because Helena was asleep when this chick showed up. This chick woke her up and then tried to immediately make her eat from a bottle. Of course Helena refused! This chick then assumed that meant that she couldn't do it, and recommended we only try feeding tiny amounts by mouth. How the hell do you make recommendations for a patient you've only seen three times (while we were there a month, it's not like she didn't have ample opportunities to come by) and are attempting to feed in a not normal situation? She also never called us back, and when I requested she come see us during one of our sleepovers she didn't. Her tips and tricks seemed useless and overall it was just a terrible experience.

The problem is that because Helena really needs to gain weight, we need to make sure she's getting all her calories in each day so we HAVE to use the NG tube to feed her. Well, the NG tube runs down her nose and throat and into her tummy. It keeps the pathway open for the stomach acid to gurgle up from the reflux. The NG makes the reflux worse, but we can't take the NG tube out because she won't eat without it because of the reflux. We're stuck in a horrible reflux-y cycle.

I plan on reaching out to some of her nurses for tips, but it's frustrating and hard. It sucks to see her suffer through her feedings, and not sleep well knowing she's in pain.

So we're in a valley right now. It's hard, and it sucks but we'll work through it. We have a great team of medical professionals helping us, and I am confident we'll get her eating by mouth again, it might just take some time.