Thursday, September 9, 2010

Back to the Hospital

  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.

    Fiona got her first set of casts. She had them put on the Monday after getting home from the hospital. They really weren't as bad as I had anticipated- that first day I was so afraid to hurt her, but its not like when you have a cast on something broken- nothing is broken so when they bumped together or when I picked her up, none of that hurt her. But the sight of them drew a lot of sympathy- its just sad to see an infant in casts. Everything with her heart seemed to be doing great. Last weeks meeting with the cardiologist went very well and they were pleased with how everything looked and sounded. But this weeks doctors visits took a very different path.
    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.

    We are in the CVICU this time ( Cardiac Vascular Intensive Care Unit). This is were she was originally supposed to go after she was born but they switched her to the NICU last minute. We've asked a million times why they wanted her in the NICU when the only thing wrong that needed monitoring was her heart, and we have not gotten a clear answer other then the doctors fight for patients and the NICU just happened to win that fight. Well, I wish the heart doctor had won because the CVICU is WAY nicer then the NICU. We have a huge room with a 50 inch LG screen TV that has TV, movies, Internet (which is how I am writing this blog now) and even video games. We also have our own bathroom with a shower, a pull out bed, a refrigerator, and another small TV to watch shows on. We can eat in here and order food from both the hospital and out side restaurants right to the room. This feels like a 5 start hotel compared to the NICU were you stayed in a closet size room with just a reclining chair and a skinny little window that let in a minute amount of light. Of course, its not about the room, its about my daughters health, but I'm still to be convinced that the NICU was the better place for her.

     I sit here, next to her. She is soundly sleeping, all wrapped snugly in her warm little isolate, oxygen tubes wrapped around her small head. She looks so peaceful and seems to be doing fine, until you look down at her chest and see how hard it is moving- each breath looks like a hiccup. I stare at her wondering what exactly is going on. Like I said, the doctors words seem to be good news. But it is hard to know how well she is doing because they don't relate her to a normal child. When they say, "her heart looks good", well it doesn't look good compared to a normal heart, it just looks good for her heart. That could mean a million different things. I'm not so anxious to get out of here this time. I'm finally feeling scared for her since her birth. I really felt like I would be able to see when she wasn't doing well, but I didn't- I had no clue when we went to the pediatrician that she didn't look well. I had no clue that her respiratory rate was far to high or that her oxygen was too low. She seemed normal to me, maybe a little paler then usual, but nothing alarmed me. I think I have been treating her too much like a normal child and not enough like the weak being she really is- living in my own fantasy world that she is strong and fine. Its when the walls of my fantasy world come down and I see what is real that I start to breakdown, and I don't like that feeling of losing control. I can't control what is going on, but I feel like I have to be able to control my emotions. We were warned that the pregnancy was just the beginning of a life of doctors and hospitals, but it didn't sink in till the drive to the ER. But as we drove off the exit to the children's hospital I had a feeling that I never thought I would have returning to this place- comfort. I know its going to be a love/hate relationship with the hospital, but right now I feel a great amount of comfort being here.

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