My daughter has complex and complicated congenital heart defects with the added bonus of heterotaxy, upper gi malrotation and aspleenia.
For those who are curious the following is what she has:
Structural Defects -
1) Single Ventricle (HLHS - Hypoplastic Left Heart Syndrome variant)
2) DORV - Double Outlet Right Ventricle
3) TGA - Transposition of the Great Arteries
4) TAPVR - Total Annomalous Pulmonary Veinous Return
5) PS - Pulmonary Stenosis (which as of her latest surgery is now technically PA, pulmonary atresia)
6) MA- Mitral Atresia
Electrical Defects -
1) Atrial Flutter - also due to her last surgery
She has had two open heart surgeries, yet not what she was expected to have. She did not need to have an early surgery, actually bypassing the need for a Norwood or even a shunt/banding procedure. She went straight to her Glenn and TAPVR repair at just under 4 months of age. Her second heart surgery was at 9 months of age when her cardiologists detected what they thought was scar tissue but was actually membrane growing around the previous surgery site, causing her head and upper body to swell and fluid collection because her pulmonary veins were obstructed. She has had two heart caths and one abdominal surgery with her LADD procedure to correct the malrotation and an endoscopically placed g feeding tube. She has greater risk for infection because she has no spleen. And yet she has spent far more time at home than in the hospital.
But, she will die because of her CHD's.
I completely understand the issues with my daughter's heart. I know she will never be cured or fixed. She will have to undergo several risky open heart surgeries. She will have to endure numerous heart caths. She will have to sit through endless heart echo's, ekg's and cardiology visits. She will have eating issues forever. She will run the risk of further complications as she gets older and bigger and undergoes more surgeries. She will never be completely normal.
I am steeped in the reality of what my daughter's life will be medically.
I have recently spent a lot of time reading other CHD families blogs, as well as the conglomerate CHD blogs in an effort to find the right extended support system for me. My family and friends are unbelievably supportive but they have a hard time relating to all of what I feel. I was really hoping to connect to other families who are going through similar issues but I have come to the conclusion that I just don't fit in with all the other CHD parents.
Early on, I resisted reading other children's stories and talking to other parents because I was not emotionally in a place where I could handle other people's grief, fear and anxiety. Even more so, frankly I did not want to get in a competitive parenting dialogue about how their children's CHD's were so much worse and how their experience was so much worse. Believe it or not, I have seen this happen. I think it is just human nature. However, I decided to give this support group networking a try. I still have hard time with this some days but I make an effort so I can try and understand what may be in store for us. Kevin is much better than me. He is the one who talks to people and listens to their stories.
I have heard lots of stories now. Some with great results and other stories ending in heart breaking sadness.
I have wanted to connect and share C's story because when I went looking for stories there were very few that offered any hope. Again, I appreciate the reality of C's situation. I guess what I was looking for were stories that had positive undertones throughout the grief, fear and anxiety. Stories of families who have the same wants for their children as I do.
I have several wants for C. Several things I pray for daily.
The main one is that no matter what happens, I do not want C to suffer. I do not want her to be in pain, feeling miserable and scared. When C is called to Heaven I want there to be peace and no pain for her. I want her to be home with us, in her comfy pj's, in her comfy home with her family and no doctors, no nurses, no one to interrupt or make her look at the door in fear.
The second want I have for C is for her to spend as much time at home with us as possible. I have absolutely no desire or need to spend any more time in the hospital than absolutely necessary. I want C to spend all her holidays at home. I want her days at home to far, far outnumber her days in the hospital. I am very grateful for all of the doctors and nurses who provided outstanding care for C but I really have no need to have daily affirmation from them that I am providing the best care for my daughter. I do not need to be best friends with the nurses who took care of C in the hospital. I prefer to be on friendly terms and share updates and pictures when C hits milestones, not have a daily dialogue with medical personnel.
My third want for C is that she know far more people who have no idea about complex CHD's. I want to be able to surround her with people who will not pity her or coddle her just because she has the bad luck of the draw to be born with a broken heart. To quote my dear family friend Carrie, I do not want to raise C as a "cardiac cripple." I want her to know far more "normal" people than medical personnel. I do not want her to fear going to all the doctors she must go to but I also do not want them to be her "best friends." I want C to be as normal as possible and I just do not see that happening if she is constantly surrounded by medical personnel.
I wake up every morning with trepidation for what the day will bring. I wonder if today will be the day that we are hit with a new surprise with C's condition. Will today be the day we hear the words heart failure. Will today be one of the worst days of our lives.
In order to get out of bed every morning, instead of laying there with the covers pulled over my head wishing I could stay in my dreamland where babies do not have CHD's, I choose to add levity to my life. I make jokes or silly comments not in an effort to down play the severity of C's issues or appear to be a moron or to be offensive but because if I did not laugh at some of the absurdity I would absolutely never leave my bed.
Which of course has led me to think I just don't fit in with the other CHD parents.
I am trying my best to live each day. Not just exist or survive, but to actually live without the fear of what will happen next with C. I get side tracked a lot. Just talk to my husband or my boys when I am having a bad day. But, my main purpose in finding an external support system was to hopefully share some of this levity. I constantly feel as though I am stuck in limbo. I have a daughter who for all intents and purposes should not be alive. She has already beaten so many odds and statistics. However, we get treated as if she has nothing more than a hole in her heart that can be fixed with a surgery and we move on. There is no happy ending for C so we must make our happy now, every day.
I will continue to post about C's story, mostly as a record for me and my family. I am not going to feel guilty for the comments I make or the things I say. I will not feel bad for ranting and raving about having a bad day with C when everyone else tells me how grateful I should be she is alive and with me. Trust me, I know first hand how lucky we are to have C with us and doing so well. I absolutely believe that all of the prayers being said for her are working because really there is no medical reason why she has done as well as she had. I will make my life work the best I can with really living and a little bit of levity.