We got another phone call on the way into the hospital this morning.

Lila had two more episodes of SVT overnight (after our nightly phone call to her nurse), and her attending wanted to update us, so we were prepared when we arrived. Again, she was fine during the episodes; her breathing remained normal, as did her tone, color, and blood pressure. Her nurse and doctors were able to break the arrhythmia by putting ice on her face and gagging her–both common methods for treatment. Cardiology was called again, and they were meeting this morning to come up with a plan for Lila, and for us.

Once we arrived we also found out that Lila’s respiratory rate had started to slow, and her night nurse Melanie was able to give her part of her nighttime feeds via bottle–yay! She still needed to be fed the remainder through her tube, but this was an improvement, and an awesome one. Her nurse today, Anna, was also able to get Lila to take a little bit via bottle this morning as well. We are SO happy her respiratory rate seems to be slowly coming down. It still spikes up to the 80s and 90s, but is much more consistently in the 60s and lower. We also found out that the lasix seems to be working, and she is down to 9lbs! She was 10lbs, 1oz as of 2 nights ago, so this is great news.

Lila decided to freak out her mother today, and started having another episode of SVT while I was handing her to Jon to put her back in her crib. She stayed in the arrhythmia for about 7 minutes, and was fine during it–the girl can YELL, which she did, when the NP and nurses were trying to gag her. The SVT was also not as high as it had been on Sunday night (the first night; her heartrate during the SVT was about 250 beats per minute, and this was in the 210s and 220s). I was still a bit shaken by this happening, but knew the doctors and nurses were taking good care of her. I had to walk away while they were gagging her though, I just couldn’t stand it. After this latest episode, we were told again that Cardiology would be coming by later today to go over a plan for treating this.

After Lila calmed down, we decided to try feeding her via bottle, to see if she’d take to it again. She took about 20ccs from the bottle, and then decided she wanted to go to sleep. She sleeps like Jon–nothing can wake her up when she’s sleeping, not if she doesn’t want to. So we fed her the rest via her feeding tube, and she slept through until mid afternoon. We think her SVT episode wiped her out, so just decided to let her sleep.

For her next feeding, her respiratory rate was consistently low, and her heartrate was doing well, so we decided to try nursing again. And guess what? SUCCESS! She did SO well, I think all three of us were overjoyed, and a little shocked. She’s probably not nearly up to speed on how much she’s eating this way, but she’ll get there. She didn’t fuss at all in between this feeding and her next one, so she must have gotten full enough. It’s going to be an adjustment, trusting Lila, and myself, to know that she’s eating enough, once we move to nursing full-time. Until now, we’ve always known exactly how much she’s eating. But we have a few more days at the hospital, and time to work on making sure she’s getting what she needs. The nurses will be monitoring her weight, and diapers, to be sure she’s eating enough this way. We decided to go with nursing for her next feeding also, and *think* it was a success again. She only fed for about 15 minutes, but again, got sleepy, and was all set, so we let her be. She wasn’t fussing at all, and was content in her crib with her music box on when we left. She did such a great job with feeding today, I am so proud of my little munchkin.

While Lila and I were figuring the whole nursing thing out, Cardiology stopped by to discuss a course of treatment for Lila’s SVT. They recommended we start her on a beta blocker, propranolol. This is not a complete solution, and will not prevent them from happening altogether, but will lessen the likelihood of them occurring. Jon and I will be learning how to administer the propanolol also, because we will be giving it to her once we get home from the hospital.

I should stop here, and mention a couple of things about SVT. This is not something that happened as a result of Lila’s rough delivery. It is something people are born with, and if we hadn’t been at Children’s for her hypothermia therapy, we may not have caught it as early as we did. People live with SVT all the time, and many do not even know it. Babies can outgrow it, or may need to be treated with medication over their lifetime, it all depends on the individual. It can wait to show up until a person is much older, and something as simple as a sneeze can set it off. The episodes are easily treated with medication, if the ice and gagging don’t work.

SVT is also not something that will keep her in the hospital. Once Lila is old enough to speak and communicate with us, she’ll be able to tell us when she isn’t feeling well (SVT makes people feel tired or lethargic, and they can tell when their heart is racing), and she can even eventually know how to break her own episodes, if she has any. Until she is able to communicate this to us, Jon and I will need to learn how to look for the signs that she is having an episode, and how to break it. We will be learning how to check her heartbeat, both with our hands, and with a stethoscope, to see if it is beating too fast. We will be learning how to gag her (oh, joy), and anything else we should be doing if she should ever have another episode once she is home with us.

Scary? Hell, yes. But we will handle it, whatever it takes.

The last bit of news we got today is that Lila has her follow-up renal ultrasound scheduled for Friday. We are hoping that the adrenal hemmorhage on her right kidney has resolved itself, and that nothing more will be needed in this area.

So overall, another pretty good day. We are remaining VERY cautious about all of the encouraging news, I don’t think we’ll truly believe this nightmare is over until we are all home together. Hopefully tomorrow will go just as well, and perhaps little girl can behave herself, and not have any more episodes of SVT overnight tonight.

Hanging onto her 2 favorite things, her Duck, and her WubbaNub.

Hanging onto her 2 favorite things, her Duck, and her WubbaNub.

Sleep well, little one. We love you.

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