Tonight’s post is probably going to be long, fair warning.

It all started with last night’s nightly phone call to the NICU, something we do every night before we head to bed, to see how Lila is doing.We spoke to her nurse, Gwen, who told us that Cardiology had been by to check on Lila, because they were a little concerned that her heart seemed a little generous (aka, large) on her chest x-ray. She told us the Cardiac Fellow on duty that night would give us a call back in a couple of minutes, to explain things, as she didn’t want to give us any incorrect information. Shaken, we waited for him to call us back–seriously, another roadblock?? When he did call us, he repeated that her heart seemed a little large on the chest x-ray, and wanted to do an echo on her heart in the morning (for those who don’t know, “echo” is short for echocardiogram, and is essentially an ultrasound of her heart). This would give them more information needed to determine what was going on.

I don’t know HOW we slept last night, I think it was out of sheer exhaustion. We woke up this morning, full of dread, and headed into the city early, due to the snow and the echo. We already knew Lila was having an MRI today, so now we were wondering exactly what kind of day lay ahead of us.

As we were driving in, my phone rang. I didn’t recognize the number, so immediately picked up, assuming it was the hospital. It was Lila’s attending doctor, calling to let us know about an “episode” that Lila had around 4am. She was (and is) fine, she slept through most of it, but her doctor wanted to tell us before we arrived, so we were prepared. Lila had an episode of something called Supraventricular Tachycardia (SVT), which is essentially a very rapid heartbeat. While this is generally not life-threatening, and did not cause damage to her heart, it is yet something else the Cardiology team will now be on the lookout for. Lila slept through this SVT, as I mentioned, and she maintained good tone and color. They did put ice on her face to “convert” her, meaning, to break it, but this is common practice. It could have been a one-time thing (we’re HOPING it was), but Lila now has an EKG machine by her crib, should it happen again, as the doctors want to try to get some kind of reason behind why it is happening.

Thankfully, Jon and I were almost at Children’s by the time I got off the phone. We got to her side as quickly as we could, and talked more with her attending, as well as her nurse and the NP. They were terrific, and answered all of our questions, and assuaged our fears as much as they could. They explained about the echo again, and also told us that Lila would now be getting the lasix (the diuretic I mentioned in the last post) twice a day, to help her eliminate the excess fluid in her system. This would hopefully help lower her respiratory rate, and help her to breathe easier. Her doctor also had to put an IV back in her arm, which sucks, but as long as it helps Lila, it will have to be. We made a decision to not try to nurse or bottle feed her today, and give her all her feedings via her feeding tube, until we had more answers about her heart and respiratory rate, as well as let the lasix work for a bit.

The echo was done almost immediately, and Lila was SO well behaved for it. Jon helped with her during it, keeping her occupied and making sure she was comfortable. He was singing to her, and talking to her, and she was just staring back at him, so enthralled with her dad. She was wide awake for the whole echo, and barely squirmed at all–such a good little girl.

Chillin', with her WubbaNub

Chillin', with her WubbaNub

After the echo, her nurse started to prepare her for her MRI. This was complicated, as she is so little, so timing was important. Lila was placed on a little beanbag-type pillow, in her crib, and swaddled, so she couldn’t move at all. Then she was fed, so she would be sleepy, and have a full belly for the exam. These little ear muffs were placed over her ears, so she wouldn’t be startled by the loud noises the MRI machine makes. Jon and I went to get lunch during her MRI, as we wouldn’t be much help during it. When we got back, we found out that Lila had behaved beautifully, again, and didn’t even need any sedation! She just slept through the whole thing, which was what we were hoping for.

After this, we just sat with Lila, held her, and hung out. She was fairly awake for most of this, she’s been more and more alert lately, which is awesome, and heartbreaking. I LOVE being with her anytime, but when she’s awake, and staring at me with those big eyes, it’s all I can do to keep from bawling. Jon and I know that she’ll never remember going through all of this, but it is still so hard to look into those eyes, after all she’s been through.

Being so cute, hanging out with her duck.

Being so cute, hanging out with her duck.

Neuro came up shortly after, and showed us the MRI results. This was her 10 day MRI, and mostly a follow-up to her previous two, to make sure nothing new had popped up. The neurologist told us that her brain structurally looks good, and is functioning normally. There is no evidence of seizures or strokes, thank god. There were a couple of “brighter” spots on the MRI, but the neurologist explained that that could be due to the high sensitivity of the equipment they use, and not anything of any concern. There is a very low chance the spots could be indicators of a couple of rarer illnesses, and while she is not presenting any other symptoms of these, we were going to test for them anyway, just to be safe. The doctors all believe that these results will come back negative, and we are treating her with antibiotics in the meantime, as a precaution. The neurologist even said that Lila looks “too well” to possibly have any of these illnesses–that actually made me smile, for the first time in a long time. My daughter, who has been through hell ever since she was born, was too well? Sounds good to me!

Just before 5pm, we met with the Cardiology team, about Lila’s echo. They told us that the echo didn’t show anything of any immediate concern to them. Her heart size is not abnormal after all (apparently the x-ray is not as accurate as the echo), and her heart is functioning properly and normally. They still aren’t sure as to why she had the SVT, but will be monitoring her daily to check on her progress. The only thing they did find, is this thing called a ductis (I think), which is like a little valve in the heart. Babies are born with this valve open, and it closes on its own after a couple of days. Lila’s is still open, and they are going to keep an eye on it over the next few days, to see if it closes on its own. If it doesn’t, there are a few different things they can try to correct this.

So. I think that’s about all that happened today. After we met with Cardio, we hung out more with Lila, until we left to come home. For a day that started off so terrifying, we had a semi-quiet and nice day with our daughter. Our doctor did tell us that we should plan on another week in the hospital, which is hard to deal with, but we will get through it. Whatever it takes to make sure Lila is healthy and safe to come home with us–because I’m never letting her leave once we get her home. I don’t think I’ll even let her out of my sight for quite some time.

Good night, sweet girl, we will see you tomorrow.

With her favorite toy at the NICU, the princess music box. She watches this for hours.

With her favorite toy at the NICU, the princess music box. She watches this for hours.

Advertisements