Being without a computer for a week or so really showed me just how addicted I am to the Internet. I use it for more then I realize. Our computer died on us just a few days after bringing Fiona home, so I have been without my source of information and without, I learned, my source of sanity. The only reason I am able to write now, unfortunately, is not a good thing. We are back at the special children's hospital because Fiona started to show signs of distress.
A lot has happen since I last wrote. Some that I will have to come back and write more about at another time, but here is a quick over view to update you. Our amazing friends threw Fiona a beautiful coming home party the Saturday after we came home from the hospital. They filled her closet with the cutest cloths and supplied us with enough diapers to last the first few months. Life has gone back into a somewhat normal routine, with lots of doctors appointments thrown in to mix it up. Fiona sleeps.... a lot. You would never even know she was in the house the majority of the time. This gives me lots of time to play with the boys and give them attention. The hardest part is that I can't take them out of the house to play due to Fiona's immune system not being strong enough to be out in public. Gavin and Breiden get stir crazy being in the house and I think we watched close to every Disney movie ever made (which I hate to admit). I have ventured out a few times to take them to the playground, but I got an ear full from both my husband and the pediatrician for doing so. When both Charlie and I are home, one of us is able to get out and run errands or lately Charlie has been taking the boys to the pool for a bit in the mornings to get them some fresh air. They sleep better on the days they get out and play. There have been many nights already were, between the three kids, someone was up and crying almost every hour of the night... those were fun nights.
The casts caused some problems with being able to weigh her. Our pediatrician was monitoring her weight closely because she is on a medicine which flushes the fluids out of her system. If this medicine is not working correctly, it could a- flush to much fluid and cause her to not gain or even lose weight, or b- not flush enough fluid and cause her to gain too much weight. But with the casts, he could not get an accurate weight. The pediatric orthopedic did not have a scale to weight her, which meant that the only way to get an accurate weight was to remove the casts, take her to the pediatrician to get weighed and then go and get to the casts put back on. She gets a new set of casts every week- its called serial casting- so every week we were to soak off the casts at home, stop at the pediatrician and then go on to the orthopedic for the new set. This was our first week having to do this. These casts that we were " not to get wet because they will come apart easily" took over an hour and a half to soak/ cut off at home. My husband was using all his strength to rip them off and Fiona was not happy about sitting in water for almost 2 hours and having us pull and tug at her legs. When we brought her into the pediatrician, he did not like what he saw. Her respiratory rate was high, she was what they kept referring to as "dusty" meaning she was not a nice baby pink but had a grayish blue tint to her skin, and she was "grunting" with each breath. On top of that, she had not gained any weight from her last weight check almost two weeks ago. After putting her on oxygen and talking to her cardiologist, the pediatrician made the call to send her to the ER. I was holding together fine until he said there was a good chance she would end up being sent back to the special children's hospital 2 hours away. That broke me. The lack of sleep left me unable to control my emotions and the tears came. EMTs arrived to transport her to the hospital so that they could keep her on oxygen. They kept me informed the whole ride and she did great as long she was on the oxygen.
I spent all afternoon watching her get poked and stabbed, holding her little hand (or more her little hand holding my finger). She hated having the oxygen in her nose and had about 6 different monitors attached to her, band aids on all hands, elbows and feet from the sticks, and an iv in her scalp. She looked scary. Doctors are hard to read. I still couldn't tell you if they thought she was doing well or bad. Everything they said sounded like good news, but the actions they took seemed drastic and semi urgent. Around two they decided to admit her for the night for monitoring, and minutes later decided it was better to admit her to the children's hospital where the cardiologist are on hand. They were sending a transport team down to pick her up. I called Charlie and he came to get me, although we didn't actually end up leaving for 4 more hours.
We drove separate from the transport vehicle- I thought I wanted to sleep on the ride up but I couldn't stop thinking long enough to rest. I couldn't help but flash back three weeks ago to our other late night drive up here, when I was staring out the window and rubbing the belly that is no longer there. We arrived just as the EMT called me to let me know what room she was in and walked into her room with a team of nurses hovering over her. She was starving but they wouldn't let me feed her till they got the okay from the doctor. They continued to poke and stick her with tests and kept trying to convince her to suck on her paci to hold off her hunger screams. 2 hours later, after redoing her IV and drawing the last bit of blood work, the doctor okayed her to eat. She sucked down that bottle faster then I have ever seen... and spit up the entire bottle even faster. Poor thing had just gone threw too much.