We brought Birdie home today. A week from the day that I realized something was wrong. Looking back now I realize that things were wrong before that day, but I had no way of knowing then. A week ago right now, I was worrying because Birdie hadn't had as much awake time during the day. She felt cold and hadn't eaten as often as usual. I was having a hard time waking her to eat. So I thought maybe she got cold in the house and I bundled her up. An hour or so later she seemed fine and she ate a big meal so I stopped worrying as much. We put her to bed, went to bed ourselves, and I thought if things were still off I'd call the doctor in the morning.
She woke up in the middle of the night and when I sat down to feed her she went right back to sleep. I tried to wake her up but with no luck. She was cold feeling again and I started to panic. Something was wrong. I took her temperature, but only knew how to do it under her arm. It seemed low but I thought maybe I was doing it wrong. Either way, I was worried so I called the pediatrician. The nurse there walked me through a rectal temperature, which Birdie slept through. 96.9. Panic. Total Panic. The nurse on the phone tells us to go to the ER. I call my dear friend, at 4 in the morning, who watched Bean while we were in the hospital when Birdie was born and just uttered the words "We have to take Birdie to the ER." She was at our house in less then a half hour in her pj's. During that time we were scurrying around and getting dressed. I pumped because I was already in pain and didn't know when we'd get back.
We got to the ER around 5 in the morning and luckily it wasn't busy. They took us right in. They took Birdies temperature and it was already starting to go up. I thought we'd be home before Bean woke up, once again I'd be the over neurotic infertile mama. Then they hooked Birdie up to the monitors. The nurse thought the heart monitor was malfunctioning because it read twice what it should. She told the doctor to ignore it. He listened to Birdies heart with a stethoscope and the look in his eyes made me sick to my stomach. It wasn't malfunctioning. Birdies heart was beating twice as fast as it should.
All of the sudden there were a lot of people in the room. I felt like I couldn't really breath. All I could do was cry. I've never seen hubby look like he did that morning. He's always so strong and tough. I've only seen him cry once in his life. He look scared which made me more scared. They needed to give Birdie a medicine to restart her heart. They started trying to put in an IV but her veins were so little and her heart was beating so fast it was really hard. I stood and watched while they stuck her once, twice, three times. All the while she screamed and I could do nothing. I'm usually anti pacifier if I could help it but I let them try to give one to her. Anything to comfort her. She had no idea what to do with it. She just cried more.
They called nurses from the PICU down to try to get an IV. More sticks, no IV. Finally they told us they had to give her an IO which essentially is an IV into her bone. As soon as I heard the drill start I had to leave. The next time I saw her she had a tube coming out of her leg that somewhere inside was lodge into her bone. They tried giving the medicine through that but the distance from her leg to her heart was too great and the medicine wore off before it made it there. At this point her heart had been beating so fast for hours at least, not knowing when it really started.
Finally a nurse came in who would be my hero. Miraculously he got an IV in Birdie. They gave her the medicine. Her heart stopped as it was supposed to, but standing and watching her flat line on the monitor, felt like the things nightmares are made of. Then it started again and everyone breathed again. Once she was stable they sent her up to the PICU.
She would go into the rapid heart rate (SVT) two more times that night. The last being the worst. It took her longer to rebound. Her lips started turning blue, her legs went pale. They started pumping oxygen into her. She ended up being fine. We ended up terrified. Over the next few days they tried a few different kind of medications to get her heart under control. They kept telling us that this isn't that uncommon. That we'll be able to manage it and Birdie will be okay. Finally they diagnosed her with something called Wolff-Parkinson-White Syndrome. Essentially her heart has an extra electrical pathway that can bypass the pathways it's supposed to use and get things stuck in this cycle of beating too fast. They started drugs specifically designed for this condition. Birdie responded very well. The main problem with the drug is that it can cause other heart arrhythmia's. So we had to stay in the hospital for 4 days on the medicine to be sure that didn't happen. If this drug didn't work they were ready to send us to a bigger hospital as they had exhausted their abilities.
Everyday I worried when they took an EKG and I watched the monitor like crazy. But Birdie held her own. Everyday she got better and I started to realize how long she'd been sick. We had been having problems breastfeeding that just went away. I thought she was struggling when my milk let down, instead she was struggling because her heart wasn't working. I felt like I failed her in not figuring it out sooner. She became so much more alert and generally happy. The doctors said that they thought she'd been having this rapid heartbeat since before she was born, but it reversed itself before it got picked up on anything. I kept thinking I could have done something. Maybe if I had switched OB's sooner and had one who was more attentive. Or if I'd had the c-section. Maybe going through the VBAC put extra stain on Birdies heart.
In the end though, all has turned out well. We're finally home, the medicine seems to be working. Birdie will have no ill effects from the episodes of SVT that she had. Her current condition will not limit her in any way. She'll have to either take medicine for the rest of her life or have surgery that will potentially correct the problem when she's a teenager. There were kids in that PICU who were in much worse shape then our Birdie and I am forever thankful for the doctors and nurses that took care of her and helped get her well. I will forever feel blessed that it wasn't worse.
I also will never forget. Watching as they tried to get IV's at least 8 different times during her stay. Seeing her covered with wires. Waking up to the sound of alarms for her heart rate or oxygen. Luckily they were usually false alarms but they struck fear in my heart every time. Listening to her cry as I stood there, completely unable to do anything to comfort her. Singing through tears while I stroked her head. Anything to try to comfort her. My heartache at being away from Bean for a week, hoping she understood how badly I wanted to be with her. For a time we lived every parents worst nightmare. I am lucky I know because it was just for a time. But I will never forget the moment that hubby and I looked at each other in that ER and both were thinking the same thing. We were both wondering if we'd be taking our Birdie home with us or not. And to anyone who has ever felt that, I am so sorry and to anyone who has lived the reality of the worst case scenario, I ache for you.
I will never forget and somehow these two little lives that we get to be a part of everyday, these lives that I didn't think could get any more precious, they just did. We listened to Birdies heart ten times today already to be sure it's beating normally. I held Bean so much more closely. In my mind I already knew how short life is, how much I need to appreciate every single moment of every day. But this last week I felt it and I will never forget that. So now all I can do is pray that we don't get to that place again.