When we arrived at the PICU that night, Jeremy and I were kicked out of the room. The entourage that brought her up to the PICU directed us to the waiting room on that floor and informed us it would be a while before we would be able to see her. It was late, after midnight, and I just wanted to be near her. I knew she was scared, and I very much wanted to fight them on this, but the bear inside moaned and cried as it knew, this fight, it would not win. The internist that night came in and told us they were going to get her settled in, then perform a spinal tap. She was sick, and they wanted to "rule some stuff out", like meningitis, they told us. I tried to tell them I had had the flu, and that I was pretty sure that is what she had. I really, really didn't want them to do a spinal tap, and begged them not to, but they said it was necessary. The thought of them sticking a needle in her back and draining out fluid was just too much. They would sedate her, they told me, so I would not be able to feed her until sometime in the morning. I was still breastfeeding through all of this, getting in feedings and comfort when I could, but this broke mama bear down.
It was three in the morning, and we lay in the semi darkness on the grimy couches of the waiting room, crying, willing sleep to come bring us into darkness. That night was one of the lowest, rock bottom feelings I have ever felt in my life. I was crushed. My soul wanted to slip out of my body. I couldn't stand to be in my own skin. I wanted to lay on the floor because I felt so low, but the ground wasn't low enough. I wanted to be under it. I wanted to change bodies with her so badly, so she wouldn't have to hurt anymore.
Somewhere in the early darkness a nurse came in and told us she did good, and they were waiting on some testing. She had a rash that covered her torso and was feverish, but she was stable, and we could see her soon. Soon, just wasn't soon enough.
When they finally let us in, we were the enemy. The PICU nurses did not know us yet, and we were just other bodies that got in their way. I know rumors were starting. She's so sick. Why didn't anyone catch this? Didn't they take her to her checkups? Did they not care?
The spinal tap came back negative, but she had a virus, and they wanted to keep it contained, so they put her under isolation, which meant a yellow gown, glove, and mask, for anyone who entered her room, us included. The PICU staff warily eyed us, as we eyed them back. I was still her mama, and now that I was in the room, I wasn't going to leave. I cannot tell you, or put into words the feeling behind the division/ tug-of-war of power that was felt in that room. I was feeling territorial, and so were they. I was doing my best to stay out of the way, but I was NOT going to have them tell me we were going to have to leave for the night. Nope. No way. The one night was pure hell, and I wasn't going to leave her side. We would sleep on the floor, we told them, if we had to, but she is OUR child, our world, our universe, and she is sick, and we are staying. End of story.
They weren't happy with us, so, enter in a social worker. She was very nice, and even scrounged us up a small cot for us to sleep on, so we could have a small space in her room to call ours, which did not make the nurses happy. I was very, very grateful, and we made sure we kept our stingy laundry supply and toiletries out of everyone's way, and kept to our corner of the room when nurses entered. "We are not a hotel. There is a hotel very, very close to the hospital with a bed, a bathroom, and a shower that we could stay at," we were told, and urged, even from the social worker. "They even give you a price break if you have someone staying in the hospital." Oh, yeah. Just what we need. A $1000 hotel bill to top off this nightmare...wait.... Bills. Bank accounts. Payments, I thought to myself. I had become completely oblivious to the outside world, and had no idea the day, the date, when the mail was last checked, or anything. I didn't bother thinking about it too long. The outside world would have to wait, this was taking up 100% of my focus. Nope. Not gonna happen. "We are not leaving." I told them firmly, which caused even more feathers to be ruffled, and more visits from the social worker, until one afternoon a couple days later, my mother-in-law brought in some papers I had asked her to pick up from our house and bring to me. It was Vanessa's progress reports from each of her visits to her Pediatrician. There were about six of them, pieces of papers with her stats, and such. I was telling the social worker that we were "all on the same team." That we all wanted her to be well, get better. I am not here to eagle eye anyone. I am just here because I am her mother. She is my home. I have no where else to be. She is it. The cardiologist came in, and I handed her the papers. She rifled through them, crestfallen, as it sunk in. I was telling the truth. I took my child to each and every appointment, and then some. They told me she was fine. Here is my proof.
After the heart to heart with the social worker, and the cardiologist getting her proof, it was like a whole new hospital. The nurses, they opened and warmed up to us, as we did them. We got to know them very well by the time we left, and had become quite close to some of them. We had favorites, and ones we weren't so fond of, but now, we were all on the same team, which meant so, so much to me. They made sure we had bedding at night, and every once in a while, even scored us an extra cot. They made sure, since I was nursing, I was able to get a meal each day, on the hospitals tab. They had done a complete 180 turn, and welcomed us into the world of PICU nursing. Jeremy was commuting to the Island to work every day, and came home in the evenings, and was able to take a shower at home. Ahh...a warm shower. I was a bit jealous. It had been days since I had the luxury. The PICU rooms had no bathroom or shower, just a sink, so I was getting a little desperate. One of my favorite nurses took pity on me, knowing I would not leave Vanessa, and if I did, it'd have to be fast, and tracked down a room a couple floors down where they washed dirty hospital toys, and stored big tubs. It sounded gross, but it had a shower head with warm water that I was welcome to use. So, that became my bathroom for the rest of the hospital stays. Every other day I'd make the trek downstairs to the creepy/icky washroom, and have a much needed shower. The water would hit my face and it would feel like I was standing under a waterfall in Tahiti, it felt that good. It's the little simple pleasures that you feel extremely grateful for, when the world around you is crumbling at a very fast rate.
Her cardiologist at first, was a bit stand-off ish, partly, because she was so focused on finding out what was wrong with her heart. Her heart was a mystery, as the daily echoes she had offered not much in the way of diagnosis, only spurred more questions. Vanessa was doing okay, sick, but okay, as she so sweetly offered her little frail body up for investigation. Vanessa was a very tolerant baby, except if I was not in sight, if someone other than her mom or dad was trying to hold her, or if you were sticking her with a needle. She could charm the stripes off of a zebra. She was enchanting, and people were immediately drawn to her like a magnet. Our story spread like wildfire through the hospital, and random hospital workers would drop in and visit with this "enchanting baby." Seeing our concern for her, some would ask if they could pray. Of course we said yes, and joined them. Some just wanted to be near her, gaze and interact with her, and visit with us. Even though to her the world was a bunch of scary people all peering down at her dressed in big yellow gowns and masks, she would smile at them sweetly, and look them straight in the eyes as they listened to her chest, or took her blood pressure, or simply wanted to connect with her. She was on oxygen now, 24/7 to help take stress off her heart. It was hard to nurse her with all the cords, but we made it happen. The nurses wanted to be able to feed her too, so they rented me an industrial pump that could suck the paint off a car. I pumped in between feedings for a sorry little amount due to stress, but enough to make them happy, and add their protein powder to it.
I was getting antsy, and really, really starting to loose my marbles. Extreme stress and anxiety was taking over as the parade of specialists made their way to my daughter. Cardiologist. Nephrologist. PT/OT. Neurologist. Genetics. Ear/nose/throat specialist. anesthesiologist. Internists. Cardiac surgeon. You name it, they had an appointment with Vanessa. She was being combed through head to toe, which is what I had been wanting from day one, but that didn't mean that it was going to solve anything but instead, only give diagnosis. She failed her hearing tests, but she could hear, they were pretty positive of that. Genetics took massive amounts of blood from her, Jeremy, and I. A FISH test was needed to rule out the suspicion of VCFS/ Di George syndrome/ or Marfan's syndrome.We would get the results weeks later. That in itself is for another post that I am not feeling strong enough to write yet. It will need an articulate, thoughtful, bleeding out of my heart honest post, so, I will write it sometime. I hope.
Jeremy and I were falling into a deep depression. One night I was talking to Jeremy in the darkened room as Vanessa slept and admitted to hearing voices. I didn't hear them all the time, mainly when I was trying to go to sleep, or when things were quiet. I couldn't make out the words, but mainly it was different voices calling out my name. I truly felt as if I were going crazy. To my complete surprise, he was hearing them too, which freaked me out even more.
What I hated most out of that hospital stay, was when she had to go to a procedure. MRI after MRI where they had to sedate her. The biggest for me was when she had to go to the Cardiac Cath lab. She was so sedated, and the recovery room was so awful, I hated her having to be there. The people were nice, and, they knew our story, but it made mama bear roar to see her baby come out of anesthesia crying, but having no voice to go with it, because she was so weak. I couldn't hold her. She was delirious. I absolutely hated it, and the bear inside wanted to rampage the halls, and rip into the person who drugged her so deeply.
Soon after the cardiac cath, we had a sit down with her cardiologist. Her face was grim as she sat us down, and confessed right away We had grown to really like her, and she, us. Vanessa had her under her spell, as the two of them had this very deep connection. She was the only other person Vanessa called "mamma" in her soft, breathy, sweet little voice. It completely melted her.
"I made a mistake." she told us, as we looked at her confused.
"When I was pushing the cath through, I accidentally made a little well in her heart, where there shouldn't be one, and it will have to be repaired during her surgery. I have done this procedure for over twenty years, and have never made that mistake....I don't know what happened.. I am so sorry."
She was crushed, as were we. Another worry/problem to add to the mound. The mound was so tall, I didn't even know how to categorize this new development. Worry a little? Worry a lot? Worry so much that I hear voices? Where should I put this worry....I have no more space left.
The fact that she fessed up right away, and was seriously feeling very bad about it, she assured us that it was alright. Vanessa would be alright, but it would be something they would have to fix. She felt terrible, and knew we were very emotional about our daughter, and confessed to being very scared about telling us. We took her word, and told her we appreciated the honesty, as mama bear growled inside. I knew she was trying. We all were. And it completely sucked that this mistake was made.
"Would it hurt her? Does it hurt her?" I asked, trying to control my emotional response.
"No.", she assured us.
But, I still, was not happy. At all. What she, or I didn't know at the time, was that one mistake would be the first of many medical mistakes that would be made from various different doctors during these hospital stays, making her survival nearly impossible.
When it was time for the cardiologist to discuss all her findings with us, we had pieced together that her heart was malformed. To what extent, we didn't know. To what need of fixing, we didn't know. There were so many things we just didn't know about her. It was as if someone literally ripped the floor right out from under us. A couple weeks ago we were going through life completely oblivious to all of this while Vanessa had a ticking time bomb in her chest. She was healthy, fine, the future seemed to be rolling out it's carpet for us, then all of the sudden we are talking syndromes, and heart defects, and words that end in -ologist. I can't even tell you what that does to a person. The only word that comes to mind is: break, or sever.
This memory is very cloudy, but I faintly remember our cardiologist, Dr. K, coming in our room, and giving us the full findings on the echos, MRI's, and cath findings: " Her heart is very malformed. She has a hole in her heart the size of Europe. It is very large, and right now is causing a lot of stress to her lungs, we have to be very careful with that. We thought she did not have an aortic arch. I think I have found it under some of her anatomy, but it may be missing, we won't know until we get in there. I am talking with doctors at OHSU to see if they can do the surgery there. The surgery is just too complex, and I don't think there is anyone in the Seattle area that can perform such a surgery, so it may be that you will have to travel for it."
It was blow, after blow, after blow, until mama bear got beat down, and silenced. This was so out of my realm of reality. A hole. No arch? Too complex for the Seattle area?
I managed to squeak out, "how is she alive without an aortic arch?"......
"I don't know...." was the answer. They didn't seem very confidant until days later when she breezed in with the house cardiac surgeon, Dr. R. They had a plan.
"We are going to divide it into two surgeries. We feel that there are too many things to repair in one surgery, so we will divide it into two, which we can do here. We have been talking to OHSU, and they agree too. We are all in agreement. This would be her best chance at survival." they told us. They were so wrong.
I will never know if the outcome would be the same had we gone to OHSU. My gut tells me the outcome would be the same, if not close. We stayed in the hospital seventeen days, that hospital stay. Seventeen stairs down to hell.
Vanessa slowly got better from her virus, and charmed her way into coming home for a couple weeks between that hospital stay and her first surgery, which was scheduled for Oct. 2nd, 2002. She came home on oxygen, so everywhere we went we had to lug an oxygen bottle with us. She was also on lasix and digoxin, which was really no fun to give. At night I'd hook her up to the oximeter, and a couple times a night her alarms would sound as she would dip down into the 70's. It would always climb back up to the 90's, right on the verge of my total freak out. To this day I have an aversion to anything that beeps, even my microwave. Even though I loved having her home, and sleeping in my own bed, the first surgery couldn't come soon enough.
I wanted my baby well, so, very, very badly.
I am going to put the pen down for now, and stop writing about the hospital stays. I will write more about it as the wounds offer small windows of sharing. This past friday marked ten years since I saw my baby alive. Now, I make the pilgramage to feel the sun again, honor her memory by taking care of my Grace, and to being a loving human being to the people around me. It hurts so bad, but I do it.
When there is beauty, I think of her. Where there is love, I feel her. When there is peace, I cherish her. I miss her with every cell in my body, and love her with every piece of my being.
I love my Vanessa Rose to the moon, past the stars, and back again.