Being a couple weeks out from the horrific experience that was the surgery, I'm less inclined to write about the trauma. Now that I can happily report that my child is smiling often and sleeping well, I don't really want to relive details of the badness. Just know, it sucked. And still, I see the little bruises from the many IVs (and many more IV attempts), or AJ will start crying out of hunger or tiredness and I will relive a little bit of that week, and I will feel that pit in my gut, that physical ache, almost as if I'm trying to pull my little one back into the womb, where I know she would be safe from needles and narcotics and nurses. Fortunately, that sensation is now fleeting, just a bad remnant of memory of one of the hardest weeks of my life.
Just a few more thoughts before I put the surgery topic to rest.
We were at home, the first full day after leaving the hospital. Dave, Grandma Judy, and I were breathing easier after watching our little one blossom quickly back into the smiling, attentive baby she was before surgery. One of us said, "Thank god that is behind us now."
"Yes, that's the most difficult thing I've ever been through." I don't remember who said it first, Dave or his mom, but they both agreed, it was the hardest event in their lives. This struck me, though it probably shouldn't have. As the mom, I think I took ownership of this event as my tragedy to go through with AJ. I knew others were a part of it, but it was mainly mine and AJ's. This state of mind was not clear to me until I realized how much others had suffered. This was not just my struggle, and I felt guilty that I had been locked so selfishly into my own grief, that I did not see the grief of others. I saw their support and was grateful for it. But that's selfish, too, to see my husband and his parents and my family and friends as solely support for me and AJ. They were supporting me, yes, but they were suffering, too. I didn't acknowledge that. Perhaps it was a defense mechanism; perhaps my pain would have been too much if I had acknowledged their misery. Maybe I just couldn't handle any more sadness. I remember thinking that about my father when my mother was ill. To me, he seemed very selfish in his grief, unable to recognize that my sister and I were losing somebody, too. But maybe he just couldn't. He couldn't recognize our grief, because it would cause his to multiply beyond his tolerance.
Likewise, maybe part of the reason Aleida's surgery was so difficult for my husband and in-laws was a result of watching me and the physical and emotional pain I felt as the mother. Whatever the case, I feel grateful for their support, and grateful for their struggle as well.
During the same conversation mentioned above, my mother-in-law said to me, "You've had a lot of tragedy in your short life." I know she was thinking of my mother's cancer and resulting death. I know she was thinking about Aleida's heart and the surgery. And I can see why she would say this, especially since both of these major events happened since I met Dave. I appreciate the recognition that these were hard times. Nobody should have to go through these things.
But I've never thought of my life as more tragic than others, even though I did live in NJ for 4 years. Don't think that I have at all minimized the significance of losing my mother or watching my baby daughter undergo open-heart surgery. I have felt both intensely. But my life has been so full of goodness. I had a happy childhood, with loving parents and a good big sister. My mother may have died too young, but I wouldn't trade the 25 years I had with her for 50 with anyone else. I was able to pursue a variety of passions and interests. I have incredible friendships in my life. I have been able to travel and see amazing things in this world. I have lived in beautiful places. I have been so lucky in love. I have an amazing little baby girl, and again, I wouldn't trade her for any other baby without a heart condition. I even love and respect my in-laws! Not many people can say all those things (especially the last one). So, I guess what I'm saying is that the hardships in my life have been more than balanced by the joys. It goes back to those peaks and valleys- you can't have one without the other, and the lows make you recognize and appreciate the highs. As I close this chapter of my life, I recognize that I was in a valley. But, I've climbed out, with the help of my family, friends and modern medicine. And now I'm just enjoying the view from higher ground.
Saturday, September 26, 2009
Sunday, September 20, 2009
The Rest
Because I am home now, and see that Aleida is rapidly returning to her old self, even better, I can finally write about the rest of the hospital stay. Now that I can actually see and feel things getting back to "normal," I can write about how far away normalcy seemed less than a week ago.
After surgery, the big goal was extubation- removal of the breathing tube in Aleida's nose. As mentioned in a previous entry, extubation got delayed because AJ had a delayed (but pretty normal) inflammatory response. She was puffy and distended. Even her eyelids were swollen, so she couldn't open her eyes all the way, and when she did, she did not look like my baby.
Seeing her with the tube in was heart-breaking- especially when she was puffy. I could touch her and talk to her, but I could not hold her or feed her. For the almost 3 days the tube was in, she received only IV sugar water. As her primary source of nutrition, I was totally stressed out by the lack of calories. It may be routine, but it didn't feel right. Maybe this stems from all the focus we put on weight gain in the first months of life.
The tube did finally come out, and I thought, "It will all get better from here." She was able to cry once the tube was out, a sound that actually relieved me. She was hoarse and weak, but she had a voice again.
Holding her was nice, a much needed physical connection, but ultimately unsatisfying. She still had chest tubes, IVs and wires coming out of her little body, so just picking her up and moving her 2 feet to the chair beside her hospital crib was a 3-person job. She felt extremely fragile with all those connections, not to mention the incision.
This is what I wish I'd been prepared for: extubation means no more sedation. No more sedation means more awareness. More awareness equals more pain. Getting the tube out was certainly a step in the right direction, but a stage of the process for which I was unprepared. The night after her extubation may go down as the longest and most difficult night of my life. The nurses worked hard to manage Aleida's pain, but she was still uncomfortable all night. She would sleep for maybe an hour at a time, then wake up crying. Nurses would give medication if they could. Sometimes they would have to wait to keep her levels within limits. I would wake up and come to her from my little ICU bed by the window, and the nurse would place her in my arms in the chair next to her crib. She would cry and squirm, but ultimately settle down. I held her until I became so deliriously tired that I was afraid of falling asleep and dropping her. Then, I'd call the nurse and she'd help me place her back in the crib and the whole cycle would start over again.
I'd been able to start feeding her again, but it took awhile for her digestive system to kick back on, so though probably ravenous, she was bloated and distended and had trouble latching. I was disappointed that holding her was not the solace I had planned on. I was emotionally worn down from seeing my 3-month-old daughter in pain. I was physically exhausted from sleeping in the ICU for 3 days- which really means not sleeping much at all. In other words, I was nearing a breakdown.
But in the end it was not about me at all. It was about the innocent, ignorant little creature lying in that hospital crib, who clearly did not understand what was going on. Everyone kept telling me, "She's doing great. She looks great. Her numbers are good. She's progressing as we expected." I understand that this is what doctors and nurses have to look for. I really do. But for me, her mother, who sees the distended belly, the bruises from her IVs, and her furrowed brow, numbers mean jackshit. The furrowed brow, especially, broke my heart. She never furrowed her brow before the surgery. Now, every time she was awake, and even sometimes asleep, her little brow would be furrowed in discomfort. She felt so far away from the baby I'd brought into the hospital, that I became convinced that she had been forever changed, and that my smiley, shiny-eyed wonder was gone forever.
After surgery, the big goal was extubation- removal of the breathing tube in Aleida's nose. As mentioned in a previous entry, extubation got delayed because AJ had a delayed (but pretty normal) inflammatory response. She was puffy and distended. Even her eyelids were swollen, so she couldn't open her eyes all the way, and when she did, she did not look like my baby.
Seeing her with the tube in was heart-breaking- especially when she was puffy. I could touch her and talk to her, but I could not hold her or feed her. For the almost 3 days the tube was in, she received only IV sugar water. As her primary source of nutrition, I was totally stressed out by the lack of calories. It may be routine, but it didn't feel right. Maybe this stems from all the focus we put on weight gain in the first months of life.
The tube did finally come out, and I thought, "It will all get better from here." She was able to cry once the tube was out, a sound that actually relieved me. She was hoarse and weak, but she had a voice again.
Holding her was nice, a much needed physical connection, but ultimately unsatisfying. She still had chest tubes, IVs and wires coming out of her little body, so just picking her up and moving her 2 feet to the chair beside her hospital crib was a 3-person job. She felt extremely fragile with all those connections, not to mention the incision.
This is what I wish I'd been prepared for: extubation means no more sedation. No more sedation means more awareness. More awareness equals more pain. Getting the tube out was certainly a step in the right direction, but a stage of the process for which I was unprepared. The night after her extubation may go down as the longest and most difficult night of my life. The nurses worked hard to manage Aleida's pain, but she was still uncomfortable all night. She would sleep for maybe an hour at a time, then wake up crying. Nurses would give medication if they could. Sometimes they would have to wait to keep her levels within limits. I would wake up and come to her from my little ICU bed by the window, and the nurse would place her in my arms in the chair next to her crib. She would cry and squirm, but ultimately settle down. I held her until I became so deliriously tired that I was afraid of falling asleep and dropping her. Then, I'd call the nurse and she'd help me place her back in the crib and the whole cycle would start over again.
I'd been able to start feeding her again, but it took awhile for her digestive system to kick back on, so though probably ravenous, she was bloated and distended and had trouble latching. I was disappointed that holding her was not the solace I had planned on. I was emotionally worn down from seeing my 3-month-old daughter in pain. I was physically exhausted from sleeping in the ICU for 3 days- which really means not sleeping much at all. In other words, I was nearing a breakdown.
But in the end it was not about me at all. It was about the innocent, ignorant little creature lying in that hospital crib, who clearly did not understand what was going on. Everyone kept telling me, "She's doing great. She looks great. Her numbers are good. She's progressing as we expected." I understand that this is what doctors and nurses have to look for. I really do. But for me, her mother, who sees the distended belly, the bruises from her IVs, and her furrowed brow, numbers mean jackshit. The furrowed brow, especially, broke my heart. She never furrowed her brow before the surgery. Now, every time she was awake, and even sometimes asleep, her little brow would be furrowed in discomfort. She felt so far away from the baby I'd brought into the hospital, that I became convinced that she had been forever changed, and that my smiley, shiny-eyed wonder was gone forever.
Saturday, September 12, 2009
Post Op Day 1
I think this event has been traumatic enough that I am grieving it. Or maybe these major life events cause a process similar to the grieving process. Either way, I am in the "Anger" phase.
The nurses and doctors had been hopeful that AJ would spend minimal time on the breathing tube. Unfortunately, she had a delayed inflammatory response and a high heart rate that prevented that optimism from coming to fruition. It's day 2 now and she's still on the tube. Yesterday morning, however, I woke hopeful that I would be holding my baby before the afternoon. So, when it became clear that this would not happen, I started to get angry.
I spent much of yesterday trying to find an outlet for this anger. I'm angry at the situation, clearly. But there is no satisfaction or relief in that. There is no outlet for the tension. I tried to be angry at the docs and nurses who were delaying the removal of the breathing tube. But, I watched them go about their business and knew that they are only doing what is best. I want to hold my daughter, but I don't want to rush into something that could be a mistake and potential set-back.
I tried to be mad at Dave. We'd taken a break from the ICU to jog on the nature trails behind the hospital. After our jog, we were sitting under a shade tree, stretching and watching the fountain in a nearby courtyard. I told him that I'd been trying all morning to be angry at him. He replied, "Well, then you'd have to be mad at yourself too."
"No, I'm not angry at you for Aleida's condition. I was trying to be angry at you for taking me jogging on a trail that was mostly uphill."
He laughed. "Oh yeah. Sorry."
"I can't be mad at you though. Because I feel better."
"I knew you would."
"But I think I'm just looking for something or someone tangible to be mad at. There's no one."
"You could be mad at God."
"If I really believed in him...But even if I did, a real Christian isn't supposed to be mad at God because you are supposed to trust in his will."
"Damned if you do, damned if you don't," Dave said. "That's almost enough right there to turn an agnostic into an atheist."
So my quest to find something to be mad at failed. I couldn't blame this situation on anyone. It just was.
I caught myself standing by Aleida's bed as she went through a cycle of relative wakefulness and struggled against her tubes and made the crying face but couldn't actually cry. And I noticed that I just kept thinking, "Nobody should have to go through this. Nobody should have to go through this." I meant myself. I meant my baby. I meant my husband and his parents. Nobody should have to go through this.
What does that mean, though? I'm going to get philosophical, but the situation calls for it. If nobody should have to go through this, then nobody should have to go through anything difficult that isn't a product of their own decisions. Nobody should have to go through natural disasters, illness, injury, oppression, loss. But I wonder, without the suffering, would we even notice the joy? Would we feel it as strongly? Isn't part of our enjoyment of the weekend a product of the work week? Would great food taste as good if we had no experience with bad cafeteria fare? You cannot have peaks without valleys. And I believe, the deeper the valley, the higher the peaks seem.
So I know that once this is all over and we are back home, the everyday routine will be sweeter. Our quiet moments will be more cherished, and I will be more grateful for each little smile.
In the mean time, though, this sucks. Nobody should have to go through this. But I've been thinking about what I've heard them ("them" being psychologists and talk show hosts) say about self talk. You can improve your outlook by consciously changing your inner monologue. So, instead of saying to myself, "Nobody should have to go through this," I've been trying to actively tell myself, "We will get through this and be stronger because of it." And when it's all said and done, I'll be the mother who wakes smiling for the nighttime feeding and finds joy in a poopy diaper.
The nurses and doctors had been hopeful that AJ would spend minimal time on the breathing tube. Unfortunately, she had a delayed inflammatory response and a high heart rate that prevented that optimism from coming to fruition. It's day 2 now and she's still on the tube. Yesterday morning, however, I woke hopeful that I would be holding my baby before the afternoon. So, when it became clear that this would not happen, I started to get angry.
I spent much of yesterday trying to find an outlet for this anger. I'm angry at the situation, clearly. But there is no satisfaction or relief in that. There is no outlet for the tension. I tried to be angry at the docs and nurses who were delaying the removal of the breathing tube. But, I watched them go about their business and knew that they are only doing what is best. I want to hold my daughter, but I don't want to rush into something that could be a mistake and potential set-back.
I tried to be mad at Dave. We'd taken a break from the ICU to jog on the nature trails behind the hospital. After our jog, we were sitting under a shade tree, stretching and watching the fountain in a nearby courtyard. I told him that I'd been trying all morning to be angry at him. He replied, "Well, then you'd have to be mad at yourself too."
"No, I'm not angry at you for Aleida's condition. I was trying to be angry at you for taking me jogging on a trail that was mostly uphill."
He laughed. "Oh yeah. Sorry."
"I can't be mad at you though. Because I feel better."
"I knew you would."
"But I think I'm just looking for something or someone tangible to be mad at. There's no one."
"You could be mad at God."
"If I really believed in him...But even if I did, a real Christian isn't supposed to be mad at God because you are supposed to trust in his will."
"Damned if you do, damned if you don't," Dave said. "That's almost enough right there to turn an agnostic into an atheist."
So my quest to find something to be mad at failed. I couldn't blame this situation on anyone. It just was.
I caught myself standing by Aleida's bed as she went through a cycle of relative wakefulness and struggled against her tubes and made the crying face but couldn't actually cry. And I noticed that I just kept thinking, "Nobody should have to go through this. Nobody should have to go through this." I meant myself. I meant my baby. I meant my husband and his parents. Nobody should have to go through this.
What does that mean, though? I'm going to get philosophical, but the situation calls for it. If nobody should have to go through this, then nobody should have to go through anything difficult that isn't a product of their own decisions. Nobody should have to go through natural disasters, illness, injury, oppression, loss. But I wonder, without the suffering, would we even notice the joy? Would we feel it as strongly? Isn't part of our enjoyment of the weekend a product of the work week? Would great food taste as good if we had no experience with bad cafeteria fare? You cannot have peaks without valleys. And I believe, the deeper the valley, the higher the peaks seem.
So I know that once this is all over and we are back home, the everyday routine will be sweeter. Our quiet moments will be more cherished, and I will be more grateful for each little smile.
In the mean time, though, this sucks. Nobody should have to go through this. But I've been thinking about what I've heard them ("them" being psychologists and talk show hosts) say about self talk. You can improve your outlook by consciously changing your inner monologue. So, instead of saying to myself, "Nobody should have to go through this," I've been trying to actively tell myself, "We will get through this and be stronger because of it." And when it's all said and done, I'll be the mother who wakes smiling for the nighttime feeding and finds joy in a poopy diaper.
Friday, September 11, 2009
Surgery Day
Right now, I'm sitting in the PICU on the morning after Aleida's surgery. I tried to write about the hardest day of my life last night, but I couldn't--too exhausted. Now, after some sleep and more staring at my daughter, I feel less delirious.
Yesterday started for me at 2 am. I set my alarm and woke Aleida to give her one last feeding. She couldn't have any milk after 2:30 am. She had a nice, long, sleepy feed and went back to sleep without issue. I went back to sleep as well, but fitfully. I knew too much to sleep soundly.
We woke at 5:30 am and reached the check-in desk at the hospital just a little after 6:30. AJ was smiling and alert. If she was hungry, she wasn't complaining.
The waterworks started as soon as they took us back to the O.R. waiting rooms. I was anticipating the handover, and I couldn't imagine giving up my baby to people I knew were going to operate on her. Sure, it might be for the best, but it's hard to be that logical in the face of trauma. AJ got a little fussy while they were weighing her and attempting to get a blood pressure. Dave bounced her to sleep and she spent the last 15 minutes of the waiting peacefully sleeping in our arms. I spent the last 15 minutes trying to keep my tears to a gentle stream.
Dave's parents came. They are so supportive and helpful. I can only imagine the burden they carry, having to worry about 2 generations of kin through this ordeal. I am so thankful for them.
We walked down the hallway to the "kissing corner," as they call it. They should call it "crying corner," because this is where I had to hand my baby over to the anesthesiologist. Right before the exchange, AJ opened her eyes. She looked at me calmly, with recognition and love. My heart broke a thousand times in that few second exchange.
They took her away and Dave's parents left Dave and I to cry it out. I felt sick. Exhausted. Scared as I've ever been in my life. Dave's presence and strong, long hug might have been the only thing that kept me from collapse. I remember saying, "Having kids is kind of horrible."
The next hours are a blur, waiting and trying not to think or visualize too much. I remember going to the cafeteria to get breakfast and barely being able to eat. I remember driving home with my mother-in-law to get my phone, which I'd forgotten. I remember walking with Dave to a particularly scenic viewpoint. Mt. Hood and Mt. St. Helens were imposing and clear in the distance.
The nurse called about 12:30 to let us know surgery was over. We hustled back to the waiting area to meet with the surgeon. He smiled as he came in. Everything went well. No surpises. No complications. He felt confident that Aleida's heart was mended and would do well.
We got to see her about 30 minutes later. She has a breathing tube, 2 chest tubes, a large incision, and several other tubes and lines attached to her. But she still looks like AJ, and that's a relief. I was a bit afraid I wouldn't recognize her.
The care she is getting is amazing. The nurses are so skilled, yet so compassionate. I have spent many hours standing by Aleida's bedside as the nurses hustle and bustle around us. I feel helpless, but grateful. It takes a certain kind of faith, not unlike the religious variety, to stay calm in the face of modern medicine.
The rest of the day was uneventful. Aleida slept. Dave and I watched her. Dave's parents relieved us long enough to go home, shower, and stop at Trader Joe's to get some snacks. By the time we got to TJ's we were exhausted. I'm sure a 3rd person would not have been able to take part in our conversation, because I don't think we were really making sense.
As we checked out at TJ's, the cashier asked us, "What have you guys been up to today?"
My mind started racing with possible responses. "We've just been hanging out at the hospital waiting for our 3-month-old to get out of open heart surgery," didn't seem an appropriate answer to such an innocent question, however true it may be. I didn't want to share that with this stranger.
Luckily, Dave was a bit quicker to respond, though there was still an awkward pause. "Oh, not much. Just hanging out. Now we're getting some munchies."
"Alright, well, have a good evening." We took our snacks and left.
"Thanks for answering. I didn't know what to say."
Dave looked at me and snickered a little. He was thinking about my bloodshot eyes and his tired squint. He was thinking about our slow response and our bag of trail mix and chocolate treats. "It's okay. That guy just thinks we're really high."
Yesterday started for me at 2 am. I set my alarm and woke Aleida to give her one last feeding. She couldn't have any milk after 2:30 am. She had a nice, long, sleepy feed and went back to sleep without issue. I went back to sleep as well, but fitfully. I knew too much to sleep soundly.
We woke at 5:30 am and reached the check-in desk at the hospital just a little after 6:30. AJ was smiling and alert. If she was hungry, she wasn't complaining.
The waterworks started as soon as they took us back to the O.R. waiting rooms. I was anticipating the handover, and I couldn't imagine giving up my baby to people I knew were going to operate on her. Sure, it might be for the best, but it's hard to be that logical in the face of trauma. AJ got a little fussy while they were weighing her and attempting to get a blood pressure. Dave bounced her to sleep and she spent the last 15 minutes of the waiting peacefully sleeping in our arms. I spent the last 15 minutes trying to keep my tears to a gentle stream.
Dave's parents came. They are so supportive and helpful. I can only imagine the burden they carry, having to worry about 2 generations of kin through this ordeal. I am so thankful for them.
We walked down the hallway to the "kissing corner," as they call it. They should call it "crying corner," because this is where I had to hand my baby over to the anesthesiologist. Right before the exchange, AJ opened her eyes. She looked at me calmly, with recognition and love. My heart broke a thousand times in that few second exchange.
They took her away and Dave's parents left Dave and I to cry it out. I felt sick. Exhausted. Scared as I've ever been in my life. Dave's presence and strong, long hug might have been the only thing that kept me from collapse. I remember saying, "Having kids is kind of horrible."
The next hours are a blur, waiting and trying not to think or visualize too much. I remember going to the cafeteria to get breakfast and barely being able to eat. I remember driving home with my mother-in-law to get my phone, which I'd forgotten. I remember walking with Dave to a particularly scenic viewpoint. Mt. Hood and Mt. St. Helens were imposing and clear in the distance.
The nurse called about 12:30 to let us know surgery was over. We hustled back to the waiting area to meet with the surgeon. He smiled as he came in. Everything went well. No surpises. No complications. He felt confident that Aleida's heart was mended and would do well.
We got to see her about 30 minutes later. She has a breathing tube, 2 chest tubes, a large incision, and several other tubes and lines attached to her. But she still looks like AJ, and that's a relief. I was a bit afraid I wouldn't recognize her.
The care she is getting is amazing. The nurses are so skilled, yet so compassionate. I have spent many hours standing by Aleida's bedside as the nurses hustle and bustle around us. I feel helpless, but grateful. It takes a certain kind of faith, not unlike the religious variety, to stay calm in the face of modern medicine.
The rest of the day was uneventful. Aleida slept. Dave and I watched her. Dave's parents relieved us long enough to go home, shower, and stop at Trader Joe's to get some snacks. By the time we got to TJ's we were exhausted. I'm sure a 3rd person would not have been able to take part in our conversation, because I don't think we were really making sense.
As we checked out at TJ's, the cashier asked us, "What have you guys been up to today?"
My mind started racing with possible responses. "We've just been hanging out at the hospital waiting for our 3-month-old to get out of open heart surgery," didn't seem an appropriate answer to such an innocent question, however true it may be. I didn't want to share that with this stranger.
Luckily, Dave was a bit quicker to respond, though there was still an awkward pause. "Oh, not much. Just hanging out. Now we're getting some munchies."
"Alright, well, have a good evening." We took our snacks and left.
"Thanks for answering. I didn't know what to say."
Dave looked at me and snickered a little. He was thinking about my bloodshot eyes and his tired squint. He was thinking about our slow response and our bag of trail mix and chocolate treats. "It's okay. That guy just thinks we're really high."
Wednesday, September 9, 2009
Pre-Op
I just realized the name of my blog is "The Next Adventure." Can this still be classified as an adventure? Can I somehow spin heart surgery to mean adventure? I don't know.
Today we were at the hospital for 6 hours doing pre-op stuff. We met with nurses, surgeons, social workers and met a mess of hospital staff. I won't go into all the hairy details, but here are the highlights (wrong word...stand outs, maybe?)
Two separate hospital staff cried with me. The cardiologist NP and the Child Life Services Worker who gave us the ICU tour. They didn't cry hard, but both got noticeably choked up when I cried. I almost couldn't take it. The empathy was overwhelming. But I was touched.
Aleida had to get blood drawn for testing and whatever they do with it before surgery. The regular nurses decided not to try, so they called in the specialist team (called PANDA- but I'm not sure what it stands for.) They had to poke my baby 4 times before they got the flow they needed. 3 times on her hands and arms and once on her head. She cried harder than she has in her life. I had to cry too, so I didn't have a more physical reaction to her cries. Again, I am amazed by the way her crying makes me feel. She seems no worse for the wear and surely has forgotten about it by now. I, however, have not.
The surgeon is British. He used the word "untoward" which I have only ever heard in movies of Jane Austen adaptations. Needless to say, I like him. He apologized for making me upset (yes, I cried with him, too), but admitted that he often said things that upset people. I am confident he knows what he is doing.
I am thankful that just about every view from every window is scenic. Even through the shimmer of tears, Mt. Hood looks awesome. Dave and I, while having a sad and heartfelt moment together, broke the gloom and tension by realizing how glad we are that we're not going through this in New Jersey. (Sorry, NJers.)
Finally, the biggest highlight- and this is a highlight- was my daughter. She smiled as much today as any other day. She sat completely still through her EKG (which requires a tech to put about 10 stickers onto her chest, hook wires to them, take a reading of her cardiac output, then unhook everything and pull all the stickers off). She took a 1.5 hour nap in Dave's arms. She melted the hearts of everyone we met in the hospital. I am sure they will all do their best to make sure everything goes smoothly.
Today we were at the hospital for 6 hours doing pre-op stuff. We met with nurses, surgeons, social workers and met a mess of hospital staff. I won't go into all the hairy details, but here are the highlights (wrong word...stand outs, maybe?)
Two separate hospital staff cried with me. The cardiologist NP and the Child Life Services Worker who gave us the ICU tour. They didn't cry hard, but both got noticeably choked up when I cried. I almost couldn't take it. The empathy was overwhelming. But I was touched.
Aleida had to get blood drawn for testing and whatever they do with it before surgery. The regular nurses decided not to try, so they called in the specialist team (called PANDA- but I'm not sure what it stands for.) They had to poke my baby 4 times before they got the flow they needed. 3 times on her hands and arms and once on her head. She cried harder than she has in her life. I had to cry too, so I didn't have a more physical reaction to her cries. Again, I am amazed by the way her crying makes me feel. She seems no worse for the wear and surely has forgotten about it by now. I, however, have not.
The surgeon is British. He used the word "untoward" which I have only ever heard in movies of Jane Austen adaptations. Needless to say, I like him. He apologized for making me upset (yes, I cried with him, too), but admitted that he often said things that upset people. I am confident he knows what he is doing.
I am thankful that just about every view from every window is scenic. Even through the shimmer of tears, Mt. Hood looks awesome. Dave and I, while having a sad and heartfelt moment together, broke the gloom and tension by realizing how glad we are that we're not going through this in New Jersey. (Sorry, NJers.)
Finally, the biggest highlight- and this is a highlight- was my daughter. She smiled as much today as any other day. She sat completely still through her EKG (which requires a tech to put about 10 stickers onto her chest, hook wires to them, take a reading of her cardiac output, then unhook everything and pull all the stickers off). She took a 1.5 hour nap in Dave's arms. She melted the hearts of everyone we met in the hospital. I am sure they will all do their best to make sure everything goes smoothly.
Monday, September 7, 2009
Contrast
I spent the last 3 days doing wedding-related festivities for my good friend, Erin. I was in the wedding party, so we spent lots of time celebrating and preparing and just having a great time. The ceremony was beautiful, the girls a lot of fun, and the weekend altogether enjoyable. Of course, in the back of my mind I kept thinking about Aleida's surgery coming up on Thursday. This wedding was always the event before the surgery, and it was a nice distraction. But now, I have no other place to focus my thoughts. My mind is spilling over with thoughts of the operation.
Truthfully, I think I would be less scared if I was about to have open-heart surgery. But I'm not and I can't take my daughter's place. I can't even explain to her what's going to happen. So, while I'm enjoying these few days with her, every one of her smiles has the sad outline of ignorance, and I feel guilty knowing more about her future than she does. Maybe it is better, her not knowing. There is anxiety in knowing and waiting and just thinking about something. And maybe that is where most of my fear is coming from- the thinking.
What am I most afraid of? It's hard to pinpoint because there are so many things. Here's a list of just a few.
1) The most obvious fear, that something will go wrong with the surgery. Let me just put it out there...that she won't make it. It's open heart surgery, afterall, and all surgeries have some inherant risks. I do not know what I would do if the worst happened. I do not know what I would do.
2) I'm afraid of seeing her taken away from me, knowing where she is headed. I don't like saying goodbye when I leave her with Dave to go to the grocery store. I know the hours she is in surgery will be agony.
3) I'm scared to see her directly after the surgery. She's going to be hooked up to machines and tubes. She'll be pale, drugged. I don't think I'll be able to hold her for several hours- maybe not even touch her. I'm not sure.
4) I'm afraid of the recovery. She's getting sturdier every day. She's working on standing up and crawling. We play airplane and she loves it. She loves baths and smiles through diaper changes. How fragile she's going to seem after such a major surgery. When will we feel comfortable handling her again? Is she going to be in pain? Will this delay her milestones like rolling over and crawling? When will we be back to normal, back on track again?
5) I'm a little afraid that they won't be able to fix her, that this will be a "wait and see" or "wait and try again" situation. I don't think this is likely, but this thought wormed its way into my brain a few days ago, and now it's leaving tracks up there, moving around and around in my head.
6) I'm worried about the scar. Honestly though, this may be the least of my worries. I'm not a vain person, and I can already tell that my daughter's lovely face, sweet temper and just that shine in her eyes will overshadow any cosmetic blemish. This scar will give her a story to tell, will make her aware of her own mortality, will help her feel lucky and blessed, will give her an appreciation for the human mind and modern science. She will hopefully embrace this as part of her life story, something that sets her apart from other girls. Still, this is a big procedure. I look at my daughter and she looks so PERFECT, that it hurts me to think about what they must do to her. But, she is not perfect. She has a whole in her heart, and the scar will be a visible reminder that she has been mended.
7) I think my biggest fear is that this will change her in some profound way. She is such an easy-going, adaptable, cheerful little creature. She is wholly unspoiled by any trauma or hardship. She is well loved and regularly cuddled. She's warm and full and comfortable most of the time. She smiles a lot. I am afraid that this surgery and the pain and confusion that accompanies it will change her. I don't want her to become fearful or suspicious or wary. She is too young to realize that life is not all warm milk and swaddled blankets. I don't want her to lose her innocence before she's 4 months old.
Truthfully, I think I would be less scared if I was about to have open-heart surgery. But I'm not and I can't take my daughter's place. I can't even explain to her what's going to happen. So, while I'm enjoying these few days with her, every one of her smiles has the sad outline of ignorance, and I feel guilty knowing more about her future than she does. Maybe it is better, her not knowing. There is anxiety in knowing and waiting and just thinking about something. And maybe that is where most of my fear is coming from- the thinking.
What am I most afraid of? It's hard to pinpoint because there are so many things. Here's a list of just a few.
1) The most obvious fear, that something will go wrong with the surgery. Let me just put it out there...that she won't make it. It's open heart surgery, afterall, and all surgeries have some inherant risks. I do not know what I would do if the worst happened. I do not know what I would do.
2) I'm afraid of seeing her taken away from me, knowing where she is headed. I don't like saying goodbye when I leave her with Dave to go to the grocery store. I know the hours she is in surgery will be agony.
3) I'm scared to see her directly after the surgery. She's going to be hooked up to machines and tubes. She'll be pale, drugged. I don't think I'll be able to hold her for several hours- maybe not even touch her. I'm not sure.
4) I'm afraid of the recovery. She's getting sturdier every day. She's working on standing up and crawling. We play airplane and she loves it. She loves baths and smiles through diaper changes. How fragile she's going to seem after such a major surgery. When will we feel comfortable handling her again? Is she going to be in pain? Will this delay her milestones like rolling over and crawling? When will we be back to normal, back on track again?
5) I'm a little afraid that they won't be able to fix her, that this will be a "wait and see" or "wait and try again" situation. I don't think this is likely, but this thought wormed its way into my brain a few days ago, and now it's leaving tracks up there, moving around and around in my head.
6) I'm worried about the scar. Honestly though, this may be the least of my worries. I'm not a vain person, and I can already tell that my daughter's lovely face, sweet temper and just that shine in her eyes will overshadow any cosmetic blemish. This scar will give her a story to tell, will make her aware of her own mortality, will help her feel lucky and blessed, will give her an appreciation for the human mind and modern science. She will hopefully embrace this as part of her life story, something that sets her apart from other girls. Still, this is a big procedure. I look at my daughter and she looks so PERFECT, that it hurts me to think about what they must do to her. But, she is not perfect. She has a whole in her heart, and the scar will be a visible reminder that she has been mended.
7) I think my biggest fear is that this will change her in some profound way. She is such an easy-going, adaptable, cheerful little creature. She is wholly unspoiled by any trauma or hardship. She is well loved and regularly cuddled. She's warm and full and comfortable most of the time. She smiles a lot. I am afraid that this surgery and the pain and confusion that accompanies it will change her. I don't want her to become fearful or suspicious or wary. She is too young to realize that life is not all warm milk and swaddled blankets. I don't want her to lose her innocence before she's 4 months old.
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