After our visit to the Joplin Cardiology Clinic, our lives were turned upside down. I really had no words to explain how I felt about Isabella's possible diagnosis. It seemed that I had an endless supply of tears that just flowed freely. I was devastated. We saw the cardiologist on a Friday and then we were to head up to Kansas City to Children's Mercy on the following Monday. That was one of the longest weekends of my life. I was hopeful that the cardiologist was wrong. I could not see any signs that my baby was sick, or at least I couldn't see them then. I did not see the fact that her cry was so weak you could barely hear her. I did not see that she would suck and suck on the bottle like her life depended on it but was unable to extract any milk from it. In fact I listened to her heart over and over and over and did not hear a murmur. I honestly thought everyone had it wrong. My baby girl was happy and healthy.
Come Monday morning, Matt and I packed up Isabella and left for Kansas City. It was the first time we had left Abigail and Madison. We were in hopes of only having to stay for one night.
We arrived at Children's Mercy and my anxiety level heightened. It was the first time in three days that I had allowed myself to even think of the possibility that Bella really might be sick. The feelings of impending doom had returned.
I sat in a chair next to Isabella while the tech performed the echo cardiogram. I kept my hands on her the entire time, caressing her head or holding her hand. And, the entire time I prayed.
After the echo, we dressed her and they put us in a room. It wasn't but about 5 minutes later that her cardiologist walked in and said "It's Truncus. I am 100% sure."
I am almost sure that my jaw dropped and my face held a look of utter shock. You would have thought it was the first time that I had even heard about this diagnosis. I guess I just really thought that it wasn't true. Matt however already knew. "You are not shocked?" I asked
"Why would I be shocked? The Dr. already told us this was the case."
The impending doom returned and I felt like the walls were closing in again. All I could see was Isabella in the OR. So helpless and small. I thought, why would God allow this to happen. Why Us!! The questions shouted in my mind. I felt so helpless. What kind of mother was I if I could not protect my baby? I was grasping at answers but nothing would come. I just wanted someone to fix this, to fix this awful thing that was happening to us. I don't want to say that I turned my back on the Lord at this time, because that is not what I did. But I was angry. I was angry that Isabella was going to have to suffer. I pleaded with God to fix her, and not just sometime, but immediately. My emotions were running wild.
The next thing I knew, the nurse from the cath lab came in to go over the cardiac catheterization for the next day. They said since she was only a few weeks old, she would have to stay overnight after her cath.
We took Bella and checked into the Ronald McDonald House.
The next morning we headed over to the hospital to check in for her cath. They started getting all of her vital signs before taking her back for the procedure and I was shocked by what they found. When they hooked her up to the oxygen saturation monitor, it read 86%!! WHAT!! Normally people are 95% or above. If that wasn't a slap in the face of reality, then what was. The nurse assured me that it was a normal reading for Truncus. In fact, she said it was better for her to run at a lower saturation.
As they started to take her away, I kissed her over and over and cried. I remember thinking that if it is this hard to send her away for a cardiac cath, then how am I going to send her for open heart surgery.
The procedure went well and while Isabella was in recovery, the Dr. took us to a room to show us images from what she found. All I remember is it being very cold in the room. Matt and I listened as she explained the pictures and then what they were going to do to fix it. I then asked "If Isabella does not have surgery, how long will she live?"
Tears began to form in the Dr.'s eyes "One year at the most." She shook her head and with great compassion that I never expected from a physician she said, "I am so sorry you guys." It scared me that she was upset because I thought, this must be bad. At the same time, I was thankful for her compassionate nature. It was very comforting to Matt and I.
Moments later Matt and I were shuffled to a small room in the recovery wing to wait for Bella. When they wheeled her in, I lost it. I scooped her and cried and cried. She looked so bad. She was ashen and so frail looking. She didn't even look like the same baby I sent off to the cath lab. I was scared. She came back on oxygen and would hardly eat. After a few hours, they moved us to a regular room on the cardiac floor. Bella was getting worse. We were definitely not going home the next day.
Over the next few days I became increasingly scared and frustrated. Basically when they did the cardiac cath, it sent Bella into congestive heart failure. It was inevitable for her reach this point, but I think the cardiac cath sped up the process. I called my mom crying "I think they are going to let her die before they fix her." They had taken her off oxygen and she as blue all of the time. She would not eat from a bottle and things just did not look good. They took us down to have a swallow study and found that she was aspirating and burning more calories to eat that what she could take in. The only option at this time was to put down an NG tube. It was a tube that went from her nose down to her stomach. As a nurse, I had inserted them before but of course Matt had not. They made us both successfully insert the tube and prove that we were capable of feeding our child this way before they would let us go home.
They also tested Isabella for DiGeorge syndrome. It is when there is a deletion on the 22nd chromosome. When kids have Truncus, there is a good chance they are positive for DiGeorge. At the time, I dismissed this possibility. It was more than I could handle at the time. All I knew is that if she was positive, then it would complicate things more. I shielded my heart from the possibility.
Other issues also began to arise. We had no insurance!! We made too much money for Medicare. We were told that we could either file bankruptcy when it was all said and done, or one of us could quit our jobs so we would qualify for Medicare. Our options were limited. We decided that regardless, one of needed to be home with Isabella. My income at the time was salary because I was the Director of Nursing at a skilled facility, so I was nominated to be the one who kept their job. I had a flexible schedule and could do some of my work from home.
So, after 5 long days (Ha, 5 days is a walk in the park to us now, but at the time it felt like a century) we were dismissed from Children's Mercy. We left in the middle of a blizzard. My parents tried to convince us to stay the night somewhere, but as I said before, we had never been away from Abby and Maddy and we were dying without them. So we trudged home. It was cold and slow. What would normally be a 3 hour drive, took us six hours. All I can say, is that it was good to be home.
I was emotional drained and not even close to being ready to face the future. I pushed the thought of an upcoming surgery from my mind and began the phase of denial. It was all just a bad dream, right??
Reflection:
Our first time at Children's Mercy was scary and confusing. Matt and I had no idea what was in store for us in the future. All we knew is that we hated every second of being there. It was as I said before, it was just like a bad dream. I remember thinking that any day now I will wake up and this will all be over. With each passing day, I felt like I would never make it through the next. It is amazing how dramatic the diagnosis phase seemed to me. I look back on it and realize, WOW, I have really grown since then. I am definitely a lot closer to God, and I think that helps (well actually I know that is what makes all the difference). I could not imagine what my life would be like if I had never grown from this experience. I don't know if I would have survived.
Once we were home, I did spend the next month in denial. I rarely thought about the upcoming surgery... at first. It was in the back of my mind and I also think I kept myself from getting too close to Bella. Yeah, I love her with all of my heart, but I was also scared that if I really bonded with her like I did with Abby and Maddy that I would not be able to handle it if I lost her. I still believed that if I believed hard enough, then God would heal her. Every Dr. appt, I would think, okay this is the appointment that they will not hear the murmur anymore and realize she is healed. I realize now that I was just not ready to face the truth and that it was much more comfortable living in my fantasy world.
That is all for now. I will be continuing the story in time. Thank you for taking the time to read my thoughts and may God Bless.
Megan
Come Monday morning, Matt and I packed up Isabella and left for Kansas City. It was the first time we had left Abigail and Madison. We were in hopes of only having to stay for one night.
We arrived at Children's Mercy and my anxiety level heightened. It was the first time in three days that I had allowed myself to even think of the possibility that Bella really might be sick. The feelings of impending doom had returned.
I sat in a chair next to Isabella while the tech performed the echo cardiogram. I kept my hands on her the entire time, caressing her head or holding her hand. And, the entire time I prayed.
After the echo, we dressed her and they put us in a room. It wasn't but about 5 minutes later that her cardiologist walked in and said "It's Truncus. I am 100% sure."
I am almost sure that my jaw dropped and my face held a look of utter shock. You would have thought it was the first time that I had even heard about this diagnosis. I guess I just really thought that it wasn't true. Matt however already knew. "You are not shocked?" I asked"Why would I be shocked? The Dr. already told us this was the case."
The impending doom returned and I felt like the walls were closing in again. All I could see was Isabella in the OR. So helpless and small. I thought, why would God allow this to happen. Why Us!! The questions shouted in my mind. I felt so helpless. What kind of mother was I if I could not protect my baby? I was grasping at answers but nothing would come. I just wanted someone to fix this, to fix this awful thing that was happening to us. I don't want to say that I turned my back on the Lord at this time, because that is not what I did. But I was angry. I was angry that Isabella was going to have to suffer. I pleaded with God to fix her, and not just sometime, but immediately. My emotions were running wild.
The next thing I knew, the nurse from the cath lab came in to go over the cardiac catheterization for the next day. They said since she was only a few weeks old, she would have to stay overnight after her cath.
We took Bella and checked into the Ronald McDonald House.
The next morning we headed over to the hospital to check in for her cath. They started getting all of her vital signs before taking her back for the procedure and I was shocked by what they found. When they hooked her up to the oxygen saturation monitor, it read 86%!! WHAT!! Normally people are 95% or above. If that wasn't a slap in the face of reality, then what was. The nurse assured me that it was a normal reading for Truncus. In fact, she said it was better for her to run at a lower saturation.
As they started to take her away, I kissed her over and over and cried. I remember thinking that if it is this hard to send her away for a cardiac cath, then how am I going to send her for open heart surgery.
The procedure went well and while Isabella was in recovery, the Dr. took us to a room to show us images from what she found. All I remember is it being very cold in the room. Matt and I listened as she explained the pictures and then what they were going to do to fix it. I then asked "If Isabella does not have surgery, how long will she live?"
Tears began to form in the Dr.'s eyes "One year at the most." She shook her head and with great compassion that I never expected from a physician she said, "I am so sorry you guys." It scared me that she was upset because I thought, this must be bad. At the same time, I was thankful for her compassionate nature. It was very comforting to Matt and I.
Moments later Matt and I were shuffled to a small room in the recovery wing to wait for Bella. When they wheeled her in, I lost it. I scooped her and cried and cried. She looked so bad. She was ashen and so frail looking. She didn't even look like the same baby I sent off to the cath lab. I was scared. She came back on oxygen and would hardly eat. After a few hours, they moved us to a regular room on the cardiac floor. Bella was getting worse. We were definitely not going home the next day.
Over the next few days I became increasingly scared and frustrated. Basically when they did the cardiac cath, it sent Bella into congestive heart failure. It was inevitable for her reach this point, but I think the cardiac cath sped up the process. I called my mom crying "I think they are going to let her die before they fix her." They had taken her off oxygen and she as blue all of the time. She would not eat from a bottle and things just did not look good. They took us down to have a swallow study and found that she was aspirating and burning more calories to eat that what she could take in. The only option at this time was to put down an NG tube. It was a tube that went from her nose down to her stomach. As a nurse, I had inserted them before but of course Matt had not. They made us both successfully insert the tube and prove that we were capable of feeding our child this way before they would let us go home.
They also tested Isabella for DiGeorge syndrome. It is when there is a deletion on the 22nd chromosome. When kids have Truncus, there is a good chance they are positive for DiGeorge. At the time, I dismissed this possibility. It was more than I could handle at the time. All I knew is that if she was positive, then it would complicate things more. I shielded my heart from the possibility.
Other issues also began to arise. We had no insurance!! We made too much money for Medicare. We were told that we could either file bankruptcy when it was all said and done, or one of us could quit our jobs so we would qualify for Medicare. Our options were limited. We decided that regardless, one of needed to be home with Isabella. My income at the time was salary because I was the Director of Nursing at a skilled facility, so I was nominated to be the one who kept their job. I had a flexible schedule and could do some of my work from home.
So, after 5 long days (Ha, 5 days is a walk in the park to us now, but at the time it felt like a century) we were dismissed from Children's Mercy. We left in the middle of a blizzard. My parents tried to convince us to stay the night somewhere, but as I said before, we had never been away from Abby and Maddy and we were dying without them. So we trudged home. It was cold and slow. What would normally be a 3 hour drive, took us six hours. All I can say, is that it was good to be home.
I was emotional drained and not even close to being ready to face the future. I pushed the thought of an upcoming surgery from my mind and began the phase of denial. It was all just a bad dream, right??
Reflection:
Our first time at Children's Mercy was scary and confusing. Matt and I had no idea what was in store for us in the future. All we knew is that we hated every second of being there. It was as I said before, it was just like a bad dream. I remember thinking that any day now I will wake up and this will all be over. With each passing day, I felt like I would never make it through the next. It is amazing how dramatic the diagnosis phase seemed to me. I look back on it and realize, WOW, I have really grown since then. I am definitely a lot closer to God, and I think that helps (well actually I know that is what makes all the difference). I could not imagine what my life would be like if I had never grown from this experience. I don't know if I would have survived.
Once we were home, I did spend the next month in denial. I rarely thought about the upcoming surgery... at first. It was in the back of my mind and I also think I kept myself from getting too close to Bella. Yeah, I love her with all of my heart, but I was also scared that if I really bonded with her like I did with Abby and Maddy that I would not be able to handle it if I lost her. I still believed that if I believed hard enough, then God would heal her. Every Dr. appt, I would think, okay this is the appointment that they will not hear the murmur anymore and realize she is healed. I realize now that I was just not ready to face the truth and that it was much more comfortable living in my fantasy world.
That is all for now. I will be continuing the story in time. Thank you for taking the time to read my thoughts and may God Bless.
Megan
4 comments:
Once again, excellent post. You made me feel like I was at the hospital with you!
Love,
Angela
That was a wonderful description of that fateful week. We were there with you, and I wish they would have told us about each other. I know they can't but it would have been nice to meet you sooner. What makes the story for me is the fact that I know what the echo room looks like and the cath lab, and everything else. I wish I didn't know what they looked like. What day did you get Bella's echo done? Caden's was Tuesday of that week. I wonder if it was the same day. I hated the music they played in there. Of course, if it were silent, it would be worse. I enjoy reading your posts. I hope you get as much out of writing them as we all do reading them!
P.S. Which doctor was it that did her cath?
That's kind fo depressing that this whole time we thought it was the same week. Shame on Melissa, and you can tell her that too! :)
I love reading your story Megan, it gives me such a new perspective. Even though I think I've probably heard it before, and been with you for a lot of it, I still love reading it, and seeing how far you and Isabella have come. She is an amazing girl. I love you both and miss you tons!
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