Being home has provided Rosemary with the absolute best medicine, freedom. She is running and playing and acting like a toddler again. Life has definitely been good to us. We've been given a new opportunity at life with Rosie and we have so many people to thank for that.
I want to take this oppotunity to say thank you, to every single person who has thought of us, prayed the life back into Rosie, provided food, a smile, gifts, visited us at the hospital, given me time out of the hospital, taken care of my other chidlren, given me a ride, a lunch, occassional libations, texts, emails, Facebook messages and the constant streaming of positive interaction that kept my head held high when all I wanted to do was cry. Everything that each one of you has done has contributed to my peace of mind when all I could do was concentrate on Rosie's care. There is no way to try to explain the solace that I found in my heart and the strength that you gave my soul to push me through and passed the pain and realities of where we were. All of the wonderful outcomes that we enjoy right now are the direct result of your positivity and prayer.
To the staff at Children's National Medical Center in DC, where do I begin? I know it's your job, but I also know that Rosie gave many of you a run for your money. From her surgeon, Dr. Jonas, to her Cardiologist, Dr. Harahsheh, her GI Team, and the amazing CICU and HKU Nurses and staff, YOU ARE SIMPLY AMAZING! Thank you for standing beside me, knowing where we were, holding on to Rosie and I, and giving me the knowledge and strength that I needed to endure all that we did in the 6 months that we were there. You are the most incredible souls to me, to witness what you do everyday, to return to Rosie's room again and again when you had to put her through the tough stuff, and still be able put those optimisticlly beautiful smiles on your faces...you are my heroes.
To my family, the life that I have led has brought me closer to all of you. When you were not physically here, you were always spiritually here. There was not a moment when I did not feel your presence and love. The amount of support that I have is absolutely the most beautiful gift in my life. The strength that I had and have now is a direct result of your love and support for me and my children. The memory of this chapter in my life will never be forgotten, not because of the difficulties, but because of the triumphs that I share with all of you. The biggest one of all, Rosemary being here with us. I look forward to sharing many more tears of joy, I love you.
And to my sister, OMG, where do I freaking begin? I would not, by any stretch of anyone's imagination, be where I am without you and Travis. Thank you for taking us in, for loving my children like they were your own, for the constant care (and we know how constant it is) that it takes to be a mulit-family household, but most of all, thank you for putting up with my insanity, because let's face it, we all know from observation that I don't need a clinical diagnosis! Travis only signed up for one Irvin, and now he has to put up with two of us! Poor guy. You have been my silent strength, voice of reason and constant support. I am honored to call you my sister. I love you.
You all have been the building blocks in my life. I am eternally grateful for your lives, your wisdom, and love. Because of that, we go on.
Monday, May 10, 2010
Tuesday, April 13, 2010
The Life Semester
Well...she did it. Rosemary graduated to HOME! It seriously felt like her college graduation when we left the hospital the night of March 30, 2010. Since we've been home, she has remet so many of her physical milestones and is back to herself mentally and emotionally, which are the biggest reasons for her daily triumphs.
The first day that we were home, it was absolutely gorgeous. The sun was shining, a warm breeze met our faces as we stepped into Spring and began our new adventure outside the walls of the hospital. I almost felt like I needed a debriefing from hospital life back to real life. Before our discharge, Rosie had only been walking again for a few days. So when she first stepped onto a sidewalk, I could see her brain trying to figure out how to scale the cracks in the sidewalk. Her brain knew what it wanted to do, but to coordinate her body to respond took some retraining and relearning patience with herself. She was starring at it, I could see her thinking, "Come on! I know how to do this, why isn't it working?" It took her the first day to get comfortable stepping on the cracks and regaining her balance. But of course, her bountiful determination helped her defeat the sidewalk cracks and the numerous physical challenges she would face in the days ahead.
By her fourth day at home, she began climbing up the ladder of the playhouse out back and sliding down the slide. I was just as excited as she was. I wanted to let her do whatever she wanted, no matter how freaked out I was about her fragile little body scaling physical obstacles. She wasn't strong enough to wear her feeding pump back pack, but we figured out a way to make it happen. As she climbed the ladder and made it to the top, I would throw her back pack over toward the slide, run around the playhouse to meet her on the other side, grab her bag and hold her hand as she flew down the slide, giggling with joyful thrills. The look on her face was priceless. What an amazing experience to have the positive contrast on this side of life again.
Everyday is filled with new revelations for her and for our family. She improves in strength and agility, she's dancing and laughing and almost running which is the cutest thing to watch. I didn't think about any of these joys while we were in the hospital because when she was sick, it was about getting her through each day with as much comfort as possible. Now it's about getting her through each day with as much joy, happiness and new experiences to enhance her life. These were the things I couldn't think about then, but are the joys of my life now.
There are simply no words to describe the shift in my mentality as a Mother in the hospital, and a Mother at home. I have found now, that whether I'm here at the house, at the doctor's office or the hospital, my life is about making Rosie's life, and the lives of my other children the absolute best it can possibly be. It has challenged me to think about what I need to do with my own life so that I can be the best Mom I can be.
The last several months have taught me and my family quite a bit about ourselves. We've all graduated in some ways, but I think Rosie's diploma has a few more credits. Congratulations Rose. We love you.
The first day that we were home, it was absolutely gorgeous. The sun was shining, a warm breeze met our faces as we stepped into Spring and began our new adventure outside the walls of the hospital. I almost felt like I needed a debriefing from hospital life back to real life. Before our discharge, Rosie had only been walking again for a few days. So when she first stepped onto a sidewalk, I could see her brain trying to figure out how to scale the cracks in the sidewalk. Her brain knew what it wanted to do, but to coordinate her body to respond took some retraining and relearning patience with herself. She was starring at it, I could see her thinking, "Come on! I know how to do this, why isn't it working?" It took her the first day to get comfortable stepping on the cracks and regaining her balance. But of course, her bountiful determination helped her defeat the sidewalk cracks and the numerous physical challenges she would face in the days ahead.
By her fourth day at home, she began climbing up the ladder of the playhouse out back and sliding down the slide. I was just as excited as she was. I wanted to let her do whatever she wanted, no matter how freaked out I was about her fragile little body scaling physical obstacles. She wasn't strong enough to wear her feeding pump back pack, but we figured out a way to make it happen. As she climbed the ladder and made it to the top, I would throw her back pack over toward the slide, run around the playhouse to meet her on the other side, grab her bag and hold her hand as she flew down the slide, giggling with joyful thrills. The look on her face was priceless. What an amazing experience to have the positive contrast on this side of life again.
Everyday is filled with new revelations for her and for our family. She improves in strength and agility, she's dancing and laughing and almost running which is the cutest thing to watch. I didn't think about any of these joys while we were in the hospital because when she was sick, it was about getting her through each day with as much comfort as possible. Now it's about getting her through each day with as much joy, happiness and new experiences to enhance her life. These were the things I couldn't think about then, but are the joys of my life now.
There are simply no words to describe the shift in my mentality as a Mother in the hospital, and a Mother at home. I have found now, that whether I'm here at the house, at the doctor's office or the hospital, my life is about making Rosie's life, and the lives of my other children the absolute best it can possibly be. It has challenged me to think about what I need to do with my own life so that I can be the best Mom I can be.
The last several months have taught me and my family quite a bit about ourselves. We've all graduated in some ways, but I think Rosie's diploma has a few more credits. Congratulations Rose. We love you.
Saturday, March 13, 2010
Beautiful Purpose
This week has changed my life forever, it's the tip of my new iceberg. As I sit here in the CICU thinking about all that had to be processed from Monday until now, I understand a little more what my life's purpose is and I am eternally grateful.
This last month, Rosie's deteriorating condition forced me to accept that a lot things were out of my control. As a parent of a child who is very sick, the best thing that you can give your child is your love. All I wanted to do was figure out why her heart, lungs and gut weren't working. I wanted answers from the doctors. I wanted the best nursing care possible. I wanted Rosemary to get better so I could just take her home and get her healthy and happy.
As the weeks went on, she got worse. There was a sense of frustration from just about everyone that saw Rosie. We all wanted to help her, but no one could find the right recipe for her recovery.
All I know is that within six days, I went from longing for answers and sobbing at the reality that I just might lose the most precious gift I've ever had to accepting God's will. I simply gave it up to big guy upstairs. One way or the other, He was gonna fix my kid. Either another procedure would present itself, or He would take her home. I finally said, "I can't stand this for her anymore, you need to do something."
Within 48 hours, Rosemary's surgeon offered us something that we didn't think we had, an option. It was the window we had prayed for. Just like a breeze that fills a room with fresh air, yesterday's surgery filled every heart that loves her with a fresh sense of hope and faith.
On Monday, I was given the news that a heart transplant was the most viable option for Rosie. Tonight, 24 hours after her 4th major open heart surgery, she sleeps comfortably, breathing on her own, and looking better today than she did the day before she had her repair. I can't believe it, yet I can.
Rosie is a fighter. She's a miracle of strength. She is proof that having faith in something and accepting life for exactly what it is and where you are will bring the beauty and bounty of love to your life. I must have done something right for this gift to be here with me tonight. I accept her purpose in my life and that my life, for sure, has a beautiful purpose for her.
This last month, Rosie's deteriorating condition forced me to accept that a lot things were out of my control. As a parent of a child who is very sick, the best thing that you can give your child is your love. All I wanted to do was figure out why her heart, lungs and gut weren't working. I wanted answers from the doctors. I wanted the best nursing care possible. I wanted Rosemary to get better so I could just take her home and get her healthy and happy.
As the weeks went on, she got worse. There was a sense of frustration from just about everyone that saw Rosie. We all wanted to help her, but no one could find the right recipe for her recovery.
All I know is that within six days, I went from longing for answers and sobbing at the reality that I just might lose the most precious gift I've ever had to accepting God's will. I simply gave it up to big guy upstairs. One way or the other, He was gonna fix my kid. Either another procedure would present itself, or He would take her home. I finally said, "I can't stand this for her anymore, you need to do something."
Within 48 hours, Rosemary's surgeon offered us something that we didn't think we had, an option. It was the window we had prayed for. Just like a breeze that fills a room with fresh air, yesterday's surgery filled every heart that loves her with a fresh sense of hope and faith.
On Monday, I was given the news that a heart transplant was the most viable option for Rosie. Tonight, 24 hours after her 4th major open heart surgery, she sleeps comfortably, breathing on her own, and looking better today than she did the day before she had her repair. I can't believe it, yet I can.
Rosie is a fighter. She's a miracle of strength. She is proof that having faith in something and accepting life for exactly what it is and where you are will bring the beauty and bounty of love to your life. I must have done something right for this gift to be here with me tonight. I accept her purpose in my life and that my life, for sure, has a beautiful purpose for her.
Wednesday, March 10, 2010
Brakes...Gas...Brakes..Gas...
I have a new surge of hope today because we have received some news that we DO have options for Rosie that DO NOT include heart transplantation at this point. We can breathe again.
Her surgeon here in DC met with me today and explained that he didn't feel that she would do well with a transplant right now and that reverting her back to her Hemi-Fontan may give her the relief and benefits that she needs. He also explained that at some point down the road, it is still possible that we may have to face the decision of transplantation and that no matter what we decide, there is still no guarantee that it will fix her problem. I am still hopeful.
Yesterday we had sent a packet of 9 discs and about 50 pages of info back to New York Presbyterian Children's Hospital where she had her first 2 surgeries. The intent was to get their opinion on whether or not she was a candidate for a transplant. To my joyous surprise, her cardiologist there said that no one on their team thought she needed a transplant at this point and that they thought they could help Rosie. They would like to try to do the trim back of the tissue in her atrial septum to reduce the pressure gradient that they feel has been causing her Fontan failure and pleural effusions.
We now have two solid surgical options that do not include transplant. We are waiting for the two surgeons from DC and NY to confer on what they think would ultimately be the best choice for Rosie. I have a gut feeling we will be going back to NY. My hope is that we can do whatever repair is necessary without relocating, but I am willing to do whatever it takes. This also means that we would be transported to NY as early as Sunday, which Columbia Presby and DC said they would help set up ASAP.
I would be relocating myself and Rosie to NY for at least 4 months. I have 2 other children to take care of and this makes it very hard for me and my family. The stress of not having them near me or being able to see them as often will be the worst part. Deciding to go to New York will include my sister and parents carrying much of this weight because they are currently loving and caring for my other two children and would need to continue to do so until we return. I am so blessed to have this option in the first place, to be able to have peace of mind about making this decision knowing that my children will have my sister, brother-in-law and parents to take the best care of them.
So here we are, about to embark on yet another set of decisions for Rosie. We are trying to give her a better option than what she has now with the best possibility for a better quality of life.
It's changing every day. Stay with us. Stay tuned.
Her surgeon here in DC met with me today and explained that he didn't feel that she would do well with a transplant right now and that reverting her back to her Hemi-Fontan may give her the relief and benefits that she needs. He also explained that at some point down the road, it is still possible that we may have to face the decision of transplantation and that no matter what we decide, there is still no guarantee that it will fix her problem. I am still hopeful.
Yesterday we had sent a packet of 9 discs and about 50 pages of info back to New York Presbyterian Children's Hospital where she had her first 2 surgeries. The intent was to get their opinion on whether or not she was a candidate for a transplant. To my joyous surprise, her cardiologist there said that no one on their team thought she needed a transplant at this point and that they thought they could help Rosie. They would like to try to do the trim back of the tissue in her atrial septum to reduce the pressure gradient that they feel has been causing her Fontan failure and pleural effusions.
We now have two solid surgical options that do not include transplant. We are waiting for the two surgeons from DC and NY to confer on what they think would ultimately be the best choice for Rosie. I have a gut feeling we will be going back to NY. My hope is that we can do whatever repair is necessary without relocating, but I am willing to do whatever it takes. This also means that we would be transported to NY as early as Sunday, which Columbia Presby and DC said they would help set up ASAP.
I would be relocating myself and Rosie to NY for at least 4 months. I have 2 other children to take care of and this makes it very hard for me and my family. The stress of not having them near me or being able to see them as often will be the worst part. Deciding to go to New York will include my sister and parents carrying much of this weight because they are currently loving and caring for my other two children and would need to continue to do so until we return. I am so blessed to have this option in the first place, to be able to have peace of mind about making this decision knowing that my children will have my sister, brother-in-law and parents to take the best care of them.
So here we are, about to embark on yet another set of decisions for Rosie. We are trying to give her a better option than what she has now with the best possibility for a better quality of life.
It's changing every day. Stay with us. Stay tuned.
Monday, March 8, 2010
Where We Are With Rosie
My day started knowing that at 4pm this afternoon, the cardiology case conference would be discussing Rosemary's failing heart. This has been the most difficult week of my life. Rosemary's little heart is not working so great, she is experiencing Fontan failure, this was the supposed to be her last repair. She has been on TPN nutrition for about 6 weeks, food through an IV, to rule out her pleural effusion problem stemming from a GI issue. She has had a GJ tube placed and replaced for feeds 3 times in one month. When I got here last Monday, her face was puffy, chest & abdomen full of dark blue veins and unable to speak or be comfortable. They restarted her formula feeds on Wednesday afternoon with hopes on sending us to a step down facility in Baltimore. By Friday morning, she was in respiratory distress again and her pleural effusion had returned. They gave her a total of 5 doses of IV lasix Thursday and her xrays that night were better. But Friday morning, she was working to breath again and she just wasn't doing well. Her xrays looked bad so they gave her another 5 doses total of IV lasix to combat the effusions that had again returned.
They moved us to a flexroom in the Heart & Kidney Unit, which has the ability to be a CICU room if necessary. There are basically two options: 1) Another open heart surgery to try to repair the narrowing of her atrial septum, which they felt was the root of her effusions. The pressure gradient across the septum and Fontan have been slowy increasing and not going in the direction we had hoped. This surgery has a 50% chance of survival with the possibility that she would need a pacemaker, and at best, that surgery may only have a 10% chance of improving the overall condition of her heart, 2) Heart Transplantation.
The surgeon is not crazy about the first option, he is thinking that transplantation would be Rosie's best chance. Her cardologist agreed. Because they would be sending us to NY Presbyterian where she had her first 2 open heart surgeries, her Cardiologist there would oversee the transplant evaluation. She was not excited about the transplant option for Rosie.
That's where we stand. It's been difficult coming to terms with these options as they are the only ones we have. Each day is a little harder, facing the possible outcome of losing her either way...well, how do I begin to accept that one. I'm dealing. Accepting. Praying. Knowing that God has complete control and whatever his will, will be done. She was born with half of a heart. Twenty-five years ago, she wouldn't have mae it 3 weeks. We intervened medically to try to repair it. She has done everything that she is supposed to do, and she is still suffering. If she stays, I get to be her Mom. If she doesn't, I'll have to wait to see her when I get Home.
Ultimately, my main concern is her quality of life. It has been slowly but steadiy slipping out of our grasp. She is working so hard just to breathe. I could feel this moment coming around the corner last week, all of the doctors and nurses became much more attentive to Rosie and my needs. Their faces were undeniably readable. Sorry smiles, asking if they could do anything for us. This has increasingly become the norm for me as I walk through the hallways that have been my home for the last 5 1/2 months.
During rounds this morning, I told the doctors again that I am a reality based Mom. I like to know the facts. I want to know exactly what they are thinking and feeling in their gut in the 3-5 seconds when they leave my door until they get to the next. I need closure on the facts so that I can begin to deal with the emotional overhaul that deciding on whether or not to try for a transplant is going to be the absolute best decision for Rosie's quality of life. There are a few other major elements that are playing into this picture for us. Her lungs have not been doing so great with these effusions. She now has a pneomothorax, air pocket, developing in her left lung and she still has an unknown pocket of fluid or substance in between her two right lobes. Her liver has been put to the test because of the Fontan, but the 6 weeks of TPN nutrition has also now taken its toll. Her liver is swollen and has dropped. She has never really been able to eat normally and has thrown up just about every day of her life. All of these things will weigh in on whether or not they will even consider her for a transplant.
If we decide to go transplant, we will be sent back to NY to Children's Hospital in Manhattan. We will have to make sure that we are within a 3 hour distance from the hospital so that in the event that a heart became available, we could be there in a minute.
We have a lot of extremely difficult life changing choices to consider. I am scared out of my mind to make any decision. I selfishly want my daughter to live because I love her and I want her to be well. But as I sit here typing, I can hear her breathing getting louder and faster, she is working harder everyday just to maintain vital signs. It's not what I want for her. I don't want her to struggle anymore. I want her to be the strong, full of life child I knew a year ago.
So I will pray tonight that wisdom in this situation be evident, that my gut feeling be my guide. That whatever is down this pike for Rosie, be the absolute best decision possible for her quality of life. Please pray too, for Rosie's strength to fight, our strength to continue to be a light for her and keep her spirits as best as they can be. For our families. I have two other children that love her. All of our hearts are mending at the mending that's been done to her's.
Thank you for reading. If you have any thoughts, advice, words of encouragement, I'm all ears. This is difficult. I am finding peace and small answers in the quiet of the night.
They moved us to a flexroom in the Heart & Kidney Unit, which has the ability to be a CICU room if necessary. There are basically two options: 1) Another open heart surgery to try to repair the narrowing of her atrial septum, which they felt was the root of her effusions. The pressure gradient across the septum and Fontan have been slowy increasing and not going in the direction we had hoped. This surgery has a 50% chance of survival with the possibility that she would need a pacemaker, and at best, that surgery may only have a 10% chance of improving the overall condition of her heart, 2) Heart Transplantation.
The surgeon is not crazy about the first option, he is thinking that transplantation would be Rosie's best chance. Her cardologist agreed. Because they would be sending us to NY Presbyterian where she had her first 2 open heart surgeries, her Cardiologist there would oversee the transplant evaluation. She was not excited about the transplant option for Rosie.
That's where we stand. It's been difficult coming to terms with these options as they are the only ones we have. Each day is a little harder, facing the possible outcome of losing her either way...well, how do I begin to accept that one. I'm dealing. Accepting. Praying. Knowing that God has complete control and whatever his will, will be done. She was born with half of a heart. Twenty-five years ago, she wouldn't have mae it 3 weeks. We intervened medically to try to repair it. She has done everything that she is supposed to do, and she is still suffering. If she stays, I get to be her Mom. If she doesn't, I'll have to wait to see her when I get Home.
Ultimately, my main concern is her quality of life. It has been slowly but steadiy slipping out of our grasp. She is working so hard just to breathe. I could feel this moment coming around the corner last week, all of the doctors and nurses became much more attentive to Rosie and my needs. Their faces were undeniably readable. Sorry smiles, asking if they could do anything for us. This has increasingly become the norm for me as I walk through the hallways that have been my home for the last 5 1/2 months.
During rounds this morning, I told the doctors again that I am a reality based Mom. I like to know the facts. I want to know exactly what they are thinking and feeling in their gut in the 3-5 seconds when they leave my door until they get to the next. I need closure on the facts so that I can begin to deal with the emotional overhaul that deciding on whether or not to try for a transplant is going to be the absolute best decision for Rosie's quality of life. There are a few other major elements that are playing into this picture for us. Her lungs have not been doing so great with these effusions. She now has a pneomothorax, air pocket, developing in her left lung and she still has an unknown pocket of fluid or substance in between her two right lobes. Her liver has been put to the test because of the Fontan, but the 6 weeks of TPN nutrition has also now taken its toll. Her liver is swollen and has dropped. She has never really been able to eat normally and has thrown up just about every day of her life. All of these things will weigh in on whether or not they will even consider her for a transplant.
If we decide to go transplant, we will be sent back to NY to Children's Hospital in Manhattan. We will have to make sure that we are within a 3 hour distance from the hospital so that in the event that a heart became available, we could be there in a minute.
We have a lot of extremely difficult life changing choices to consider. I am scared out of my mind to make any decision. I selfishly want my daughter to live because I love her and I want her to be well. But as I sit here typing, I can hear her breathing getting louder and faster, she is working harder everyday just to maintain vital signs. It's not what I want for her. I don't want her to struggle anymore. I want her to be the strong, full of life child I knew a year ago.
So I will pray tonight that wisdom in this situation be evident, that my gut feeling be my guide. That whatever is down this pike for Rosie, be the absolute best decision possible for her quality of life. Please pray too, for Rosie's strength to fight, our strength to continue to be a light for her and keep her spirits as best as they can be. For our families. I have two other children that love her. All of our hearts are mending at the mending that's been done to her's.
Thank you for reading. If you have any thoughts, advice, words of encouragement, I'm all ears. This is difficult. I am finding peace and small answers in the quiet of the night.
Friday, January 15, 2010
Delerious. On 60. Speechless.
These are 2 late night blogs that I did not get to post for various reasons. The posting date should have originally been January 15th and then February 5th, however, here they are...
This ever evolving roller coaster with Rosemary has left me feeling incredibly fortunate to have her at my side and at the same time, ridiculous for ever complaining about anything that has gone wrong.
The next paragraph begins the initial start of this blog that was written the night of January 15th upon our last admission. I had gone into the family lounge to use the computer while Rosie was sleeping. I stopped and saved it after the nurse alerted me that Rosie had woken up and was upset that I wasn't there. So today, I am rereading it for the first time and reflecting on how quickly someone else's circumstances can make your own difficult experiences seem quite small.
January 15, 2010
I know I can play off that I'm not insane at this point. The truth of the matter is that last night after getting home from a cardiology check up that allowed us to come home, I brought back the news that we would be admitted again today because of worsening pleural effusions, again, for the 5th time...and lost it. This experience has played with my emotions and has left me exhausted and understanding that control over most things in life is simply a complete illusion.
As I stood in my closet staring at my things, wondering what to throw into my "already packed for the hospital suitcase" that sits at the foot of my bed, I just started crying. The complete disappointment that surrounds having to put your kid through yet another hospital stay and the endless rounds of IV's, xrays, sleepless nights, unknown procedures and the gammet of what it means to come back to the hospital, has got me...well, exhausted. I don't unpack anymore because I never know when I will have to come back, planned or not. I actually unpacked twice, only to have to hurry and try to pack what I could while gathering Rosie's oxygen and necessary supplies just to get her back here to the hospital safely. I came in feeling completely unprepared.
I don't even know what to say anymore. I hate pleural effusions. Period. I have been trying to keep all of my friends and family aprise to Rosie's progress. It's exhausting to hear myself speak sometimes. I'm on my own merry-go-round with dealing with these hospitalizations, trying to be the strong Mother that she needs me to be, a Mother to my other two children who miss me, THANK GOD! I just feel like an emotional drainpipe sometimes.
All of the updates, good or bad, make me feel like I'm playing with the emotions of everyone who follows Rosie's progress. We're home, we're in the hospital, we're home, we're in the hospital. I can't imagine how Rosie feels, where her little spirit has had to go and what she has had to submit herself to through all of this. She hates the hospital. I just want to rescue her, I feel so helpless most of the time. I can barely comfort her anymore.
This is where I stand. Under my invisible "Harry Potter" cloak, I'm just hiding from what is really happening to keep my nose above water here. I can't stand this. But somewhere deep in there, I know that this is giving me strength and preparing me for a greater purpose for my life, and for Rosie's life. These blogs are intended to help me vent, and to help other parents and families understand my experience with having a child with HLHS. I'm clearly frustrated. But I'm still very hopeful that this will have a happy ending. I've prayed for the tiniest angels with the biggest wings to get in there and dry up Rosie's lungs. Time will tell, and I've got to keep my patience in check. Living in the hospital is getting old, and heavy...my thighs are showing signs of hanging on to the late night carbohydrates, what we like to call "The Emergemenu" that are on hand and readily available to soothe my displeasure about this experience. And so it goes.
February 5, 2010
After reading that blog entry above and reflecting on what had gone on while I was in the hospital during that time, I have, yet again, upgraded my mental luck-ometer knowing what I have with Rosie. I have today.
On that very day, January 15, 2010, a Mother who had been across the hall from us in the CICU had just lost her baby back in Mississippi to his battle with aortic stenosis. I had met her while she was here at Children's in DC awaiting a heart transplant for her newborn son. I had no idea because we had just gotten back in the hospital and I hadn't checked my Facebook updates in weeks. When I learned of it and reread the pevious post, I felt like I had so much more to learn andto be humbled by. Just two days later, another friend of mine here at the hospital lost her 10 month old son who was battling complications of Down's Syndrome and HLHS.
There is no way to describe the gravity of that place. I have the deepest respect for the mothers, fathers and families of children who have passed. Their hearts and souls have had to go to a place that every human being fears. It's not right, it's not fair. Somewhere out there, is a reason for all of it.
I look back on how upset and frustrated I was then, and still am in many ways. Upon finding out about these 2 babies, I felt ridiculous for ever being frustrated over Rosie's complications.
The reason that I decided to post and add to this blog is to try to further express how quickly circumstances can change your emotions, even when you think you have it all figured out. Everything is relative. Everytime I say I'm thankful that we're not in the CICU, that I know things could be worse and I feel ridiculous for being upset, so many people remind me that it is okay to be upset with where we are because it is hard. Rosemary has been here since October 2, 2009, with little time at home. I'm tired of this for her. I just want her to feel good again and regain her quality of life.
I'm just left speechless tonight. Thankful, and speechless.
This ever evolving roller coaster with Rosemary has left me feeling incredibly fortunate to have her at my side and at the same time, ridiculous for ever complaining about anything that has gone wrong.
The next paragraph begins the initial start of this blog that was written the night of January 15th upon our last admission. I had gone into the family lounge to use the computer while Rosie was sleeping. I stopped and saved it after the nurse alerted me that Rosie had woken up and was upset that I wasn't there. So today, I am rereading it for the first time and reflecting on how quickly someone else's circumstances can make your own difficult experiences seem quite small.
January 15, 2010
I know I can play off that I'm not insane at this point. The truth of the matter is that last night after getting home from a cardiology check up that allowed us to come home, I brought back the news that we would be admitted again today because of worsening pleural effusions, again, for the 5th time...and lost it. This experience has played with my emotions and has left me exhausted and understanding that control over most things in life is simply a complete illusion.
As I stood in my closet staring at my things, wondering what to throw into my "already packed for the hospital suitcase" that sits at the foot of my bed, I just started crying. The complete disappointment that surrounds having to put your kid through yet another hospital stay and the endless rounds of IV's, xrays, sleepless nights, unknown procedures and the gammet of what it means to come back to the hospital, has got me...well, exhausted. I don't unpack anymore because I never know when I will have to come back, planned or not. I actually unpacked twice, only to have to hurry and try to pack what I could while gathering Rosie's oxygen and necessary supplies just to get her back here to the hospital safely. I came in feeling completely unprepared.
I don't even know what to say anymore. I hate pleural effusions. Period. I have been trying to keep all of my friends and family aprise to Rosie's progress. It's exhausting to hear myself speak sometimes. I'm on my own merry-go-round with dealing with these hospitalizations, trying to be the strong Mother that she needs me to be, a Mother to my other two children who miss me, THANK GOD! I just feel like an emotional drainpipe sometimes.
All of the updates, good or bad, make me feel like I'm playing with the emotions of everyone who follows Rosie's progress. We're home, we're in the hospital, we're home, we're in the hospital. I can't imagine how Rosie feels, where her little spirit has had to go and what she has had to submit herself to through all of this. She hates the hospital. I just want to rescue her, I feel so helpless most of the time. I can barely comfort her anymore.
This is where I stand. Under my invisible "Harry Potter" cloak, I'm just hiding from what is really happening to keep my nose above water here. I can't stand this. But somewhere deep in there, I know that this is giving me strength and preparing me for a greater purpose for my life, and for Rosie's life. These blogs are intended to help me vent, and to help other parents and families understand my experience with having a child with HLHS. I'm clearly frustrated. But I'm still very hopeful that this will have a happy ending. I've prayed for the tiniest angels with the biggest wings to get in there and dry up Rosie's lungs. Time will tell, and I've got to keep my patience in check. Living in the hospital is getting old, and heavy...my thighs are showing signs of hanging on to the late night carbohydrates, what we like to call "The Emergemenu" that are on hand and readily available to soothe my displeasure about this experience. And so it goes.
February 5, 2010
After reading that blog entry above and reflecting on what had gone on while I was in the hospital during that time, I have, yet again, upgraded my mental luck-ometer knowing what I have with Rosie. I have today.
On that very day, January 15, 2010, a Mother who had been across the hall from us in the CICU had just lost her baby back in Mississippi to his battle with aortic stenosis. I had met her while she was here at Children's in DC awaiting a heart transplant for her newborn son. I had no idea because we had just gotten back in the hospital and I hadn't checked my Facebook updates in weeks. When I learned of it and reread the pevious post, I felt like I had so much more to learn andto be humbled by. Just two days later, another friend of mine here at the hospital lost her 10 month old son who was battling complications of Down's Syndrome and HLHS.
There is no way to describe the gravity of that place. I have the deepest respect for the mothers, fathers and families of children who have passed. Their hearts and souls have had to go to a place that every human being fears. It's not right, it's not fair. Somewhere out there, is a reason for all of it.
I look back on how upset and frustrated I was then, and still am in many ways. Upon finding out about these 2 babies, I felt ridiculous for ever being frustrated over Rosie's complications.
The reason that I decided to post and add to this blog is to try to further express how quickly circumstances can change your emotions, even when you think you have it all figured out. Everything is relative. Everytime I say I'm thankful that we're not in the CICU, that I know things could be worse and I feel ridiculous for being upset, so many people remind me that it is okay to be upset with where we are because it is hard. Rosemary has been here since October 2, 2009, with little time at home. I'm tired of this for her. I just want her to feel good again and regain her quality of life.
I'm just left speechless tonight. Thankful, and speechless.
Saturday, November 14, 2009
Totally Over It
We were discharged on Tuesday, November 10, after a 5 1/2 week stay for Rosie's open heart surgery. Free at last, or so we thought. Being in a hospital has its advantages. One of the disadvantages is that you are constantly exposed to germs, and Rosemary caught something just as we were on our way out. She spiked a 102.5 fever Wednesday morning. Desperate to stay out of the hospital, I called the Nurse Practioners at the hospital to see if I could manage the temperature from home. She responded well to Ibuprofen that day, so we avoided taking her in. Thursday morning, however, she spiked a 102.3 fever again. So into the cardiology clinic we came.
Being that it is cold and flu season, there were no beds available anywhere in the hospital. They said we could go to the ER and wait, or go home and wait for a call. We decided to go home. No beds became available for Rosie by morning so we opted to go to the ER. She was breathing faster, looking bluer than usual and it was obvious that she needed care. So off we went, back to Children's National Medical Center in DC.
Luckily, it was early, no one was in the ER and we went straight to a room, straight onto oxygen and Rosie finally got some rest. Her oxygen saturation levels were in the 40s and 50s when we got there, it was obvious she was air hungry and couldn't fight whatever she had caught on her own. It has been a long haul, it's not over yet. I'm totally over it. I'm tired of Rosie having to fight, tired of being here in the hospital, simply tired of it all. But as any parent knows, you do what you must do, when you have to do it, and that's it. Still, I'm totally over it. Mother Therasa, send me some patience!
Recovery takes time. I'm learning that a new level of "get over yourself" is required every day.
Being that it is cold and flu season, there were no beds available anywhere in the hospital. They said we could go to the ER and wait, or go home and wait for a call. We decided to go home. No beds became available for Rosie by morning so we opted to go to the ER. She was breathing faster, looking bluer than usual and it was obvious that she needed care. So off we went, back to Children's National Medical Center in DC.
Luckily, it was early, no one was in the ER and we went straight to a room, straight onto oxygen and Rosie finally got some rest. Her oxygen saturation levels were in the 40s and 50s when we got there, it was obvious she was air hungry and couldn't fight whatever she had caught on her own. It has been a long haul, it's not over yet. I'm totally over it. I'm tired of Rosie having to fight, tired of being here in the hospital, simply tired of it all. But as any parent knows, you do what you must do, when you have to do it, and that's it. Still, I'm totally over it. Mother Therasa, send me some patience!
Recovery takes time. I'm learning that a new level of "get over yourself" is required every day.
Monday, October 26, 2009
One Week
It's Monday morning, October...26th. I had to double check on the computer because I have no idea what the days and dates are when I'm here in the hospital. Rosie had her 3rd open heart surgery on October 2nd. Since then, it has been a constant roller coaster for her. This last week has been eventful. After a series of days of Rosemary's oxygen stauration levels dropping and daily x-rays not really showing anything, the last of the x-rays revealed a developing pleural efussion, or fluid around the lungs. So last Monday they decided to place what are called, "Pigtails" in the right side of her chest. These drainage tubes can last anywhere from a few days to a few weeks or even months. On Tuesday, her morning x-ray showed a developing pleural effusion on her left side, so they placed a pigtail in her left chest, as well. On Wednesday, I was so sick and tired of the pokes and prodding that I asked for a PIC line (central line) to be placed into her chest through a vein in her left arm to forego anymore pain associated with blood draws and IVs. This would enable them to draw blood and administer IV meds and fluids as needed through one location. She had gone through 3 IVs in 5 days over the weekend, so she was done, and so was I.
These pigtails can sometimes become clogged or kinked, so they often need to be flushed or adjusted. Thursday evening revealed a kink in her right chest tube and a twist in her left, so the cardiovascular surgeon fellow came in to unkink the lines and eventually pull off 230cc from her right lung, and 170cc off of her left. Friday, more of the same. By Saturday, her pain was becoming hard to manage so they put her on scheduled doses of morphine, on top of the oxicodone and torodol she was getting. And last night, Sunday night, the nurses noticed the tubes were not draining as they should be. As they attempted to drain and pull off more fluid, the right chest tube broke away from the drainage port and the entire tube had to be pulled out of her chest. Doctors said that this happens all of the time, all over the world, it's just the nature of chest tubes. I'll be writing to the manufacturer later...once I've got nothing better to do.
So today, we are re-evaluating the need for another chest tube and the placement of a PCA, Patient Controlled Anesthesia. Rosie has seen so much pain medication over the last 2 years of her life that the normal doses of drugs do little to nothing to help her with the pain. Hence, the need for a little more than normal on the side of narcotics. I'll be meeting with the Pain Management Team today.
All of this to say, it has been one heck of a week. Just one of the three since we've been here. I can tell you this, I am the luckiest Mother alive. To have my baby girl being taken care of in a state of the art facility, to have my sister Leslie's family watching over my other two children, to have a loving partner who supports me, to feel the love all around me from two families that never stop believing in Rosie and in us...I am very lucky.
My cousin Kristen works in the ER downstairs. This morning, she brought me a load of gifts from my family who had gathered at my Aunt Jackie's house to celebrate a Steeler Sunday. The gift bags were hoisted onto an antibacterialized gurny, it looked ridiculously silly, I got a good laugh. It felt like Christmas morning. My sister, my cousins, my Aunts and Uncles, collaborated a host of Halloween gifts, costumes for Rosie, inspirational books, clean clothes, a beautifully hand made card from my Shea-signed by all-and food and more love than you can imagine, all put together so that I could feel a little bit of home while I'm here. After she left, I sat there and cried.
All of this insanity that comes with being here, I know it will end. One day, maybe in one more week, I'll remember this time and not feel anything but relief and the same love that I feel right now. Thank you, family. Thank you for bringing me home again.
Whatever it is that makes you feel at home...harness it. It's what you got!
Here's a musical place that takes me home too...(click on "Home")...
http://www.veltzmusic.com/Home_Page.php
These pigtails can sometimes become clogged or kinked, so they often need to be flushed or adjusted. Thursday evening revealed a kink in her right chest tube and a twist in her left, so the cardiovascular surgeon fellow came in to unkink the lines and eventually pull off 230cc from her right lung, and 170cc off of her left. Friday, more of the same. By Saturday, her pain was becoming hard to manage so they put her on scheduled doses of morphine, on top of the oxicodone and torodol she was getting. And last night, Sunday night, the nurses noticed the tubes were not draining as they should be. As they attempted to drain and pull off more fluid, the right chest tube broke away from the drainage port and the entire tube had to be pulled out of her chest. Doctors said that this happens all of the time, all over the world, it's just the nature of chest tubes. I'll be writing to the manufacturer later...once I've got nothing better to do.
So today, we are re-evaluating the need for another chest tube and the placement of a PCA, Patient Controlled Anesthesia. Rosie has seen so much pain medication over the last 2 years of her life that the normal doses of drugs do little to nothing to help her with the pain. Hence, the need for a little more than normal on the side of narcotics. I'll be meeting with the Pain Management Team today.
All of this to say, it has been one heck of a week. Just one of the three since we've been here. I can tell you this, I am the luckiest Mother alive. To have my baby girl being taken care of in a state of the art facility, to have my sister Leslie's family watching over my other two children, to have a loving partner who supports me, to feel the love all around me from two families that never stop believing in Rosie and in us...I am very lucky.
My cousin Kristen works in the ER downstairs. This morning, she brought me a load of gifts from my family who had gathered at my Aunt Jackie's house to celebrate a Steeler Sunday. The gift bags were hoisted onto an antibacterialized gurny, it looked ridiculously silly, I got a good laugh. It felt like Christmas morning. My sister, my cousins, my Aunts and Uncles, collaborated a host of Halloween gifts, costumes for Rosie, inspirational books, clean clothes, a beautifully hand made card from my Shea-signed by all-and food and more love than you can imagine, all put together so that I could feel a little bit of home while I'm here. After she left, I sat there and cried.
All of this insanity that comes with being here, I know it will end. One day, maybe in one more week, I'll remember this time and not feel anything but relief and the same love that I feel right now. Thank you, family. Thank you for bringing me home again.
Whatever it is that makes you feel at home...harness it. It's what you got!
Here's a musical place that takes me home too...(click on "Home")...
http://www.veltzmusic.com/Home_Page.php
Saturday, June 13, 2009
A Walk in Their Park...
I looked out the window for a second while reading to Rosie and Lee and making puppets kiss their noses, when I realized just how peaceful we are right now. I felt lucky again today. It was really nice.
I've been up and down over the last few weeks just mentally preparing for the next phase of Rosemary's care and all that it entails for our family. We're 3 days away from her next heart catheterization which will help us determine how long we have until the next surgery. Yesterday, I had a unique opportunity to briefly reach out to another family with an incredible story who has just gone through one of the most difficult and challenging times in their lives.
While at the hospital taking care of Rosemary's pre-cath blood work, I ran into a team of her cardiologists while in the lobby. I went on my way but when I returned an hour later, I found that they were all standing on a stage behind a young girl, her family and a man in a yellow T-shirt. After a few seconds, I realized the man in the yellow T-shirt was Yankee player, Brett Gardner. It didn't take another minute to realize that the young girl was his lucky charm from last month's game which ended in one of the Yankee's most exciting inside the park home runs ever. Drew and I watch every game, and when we heard the story about Alyssa Esposito 's heart and the bracelet, we were both very moved. Yesterday, I had a chance to reencounter the joy of knowing that she had gotten her heart and a chance for a better quality of life. Alyssa received her heart transplant at the same hospital where Rosie receives her care, and from much of the same Cardiology Team. They're amazing people and extraordinary professionals.
To actually see her and doing so well just 4 weeks after a heart transplant was immensely inspiring and I found myself inside a new sense of hope. I felt honored to have the opportunity to speak briefly with her Mother. Knowing what it 's like to be inside of the vulnerability surrounding heart surgeries, she had an amazing sense of peace in her eyes and I presume those eyes have seen much more than I have seen. She conveyed her faith in the hospital, the doctors and staff and Alyssa's great strength and perseverance. Whether she knew it or not, she gave me the greatest gift, a heightened sense of hope. She's been on her journey with Alyssa for 18 years. I barely have 2 years under my belt with Rosie. It was perfect timing for me. It felt like a little booster shot for this next surgery.
I was gratefully humbled and given a new sense of encouragement and air to our journey. Thank you to the Esposito Family for sharing your lives and your story. You just filled up my gas tank for this ride.
Saturday, May 23, 2009
The Horse
Some things never change. No matter how many times you've been to the hospital or the emergency room, the feeling of having to be there never changes. In my head, I'm just standing there shaking my head...in reality, I'm just standing there shaking my head.
I usually get a little overwhelmed at the initial realization that I have to go and why I'm going. My little Rosie basically has half of a heart and when I don't really know what's going on with her, I initially freak out a little. I wasted about 3 minutes rumbling around trying to get a bag packed for both of us, not knowing if I should even spend the time to pack a bag, but really knowing that I should because you just never know if its one night or one week. Once she started vomiting again, I got my ass in gear and both of us out the door.
I always think I'm going to be a rock throughout the whole thing and then I break down. Whether it be on the way there, anticipating what I will find out or when I actually get to the ER and see that there are 50 sick kids wearing masks because they might have the swine flu and I realize that I can't protect her from that either. There's only so much worry that's worth worrying about.
This little trip reminded me of how fragile she still is and how much control over this situation I really don't have. At some point over the last 2 years, I've learned how to make peace with it. I've come to realize that my energy is better spent making her smile or chasing her endlessly around the house. All I can do is love my little girl and do my best to make the right decisions for her. You do what you can, and take care of business when you have to. Rosie is really the one who takes care of business on these trips. Of course, she puts me to shame!
You can lose yourself in the seemingly endless what ifs, but in the end, just get yourself back up on the horse, and keep riding.
Love IS all you need. Saddle up.
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