This is the day Hope is scheduled for her heart catheterization to possibly put a stent in her pulmonary artery. It also marks one year since we found out she would be born with HLHS. What a difference a year makes. I just read the first blog posting I created and cannot believe how far we have come since that day. It makes me sad to think that we actually considered terminating the pregnancy. It makes me sad to think that the option is available to parents with all the advances that have been made...that I did not know much about at the beginning of our journey.
May 13th is a special day in our lives for so many reasons and knowing Hope will be having another heart catheterization on that day scares me. I think everyone knows how scared I am anytime Hope has to go in for any procedure. I don't know why catheterizations scare me so much, but they do. Open heart surgery scares me more, but I know (or at least pray) that she won't need near as many surgeries as caths.
Our life has been great lately. We have been spending a lot of time playing outside and when we are inside...everyone seems to be getting along. I love watching my boys with Hope and how much they try and help her and play with her all the time. Everyone is getting so big and that kind of means that I am getting older...YUCK. I am going to start considering it as getting wiser, rather than older. I don't feel 40 physically, but mentally there are days when I feel a whole lot older.
Thank you all for following along in our journey and keeping our family in your thoughts and prayers.
Will be praying for a successful cath for beautiful Hope. Look at what a big girl she is with her sitting up all by herself! :) :)
ReplyDeleteHope is so beautiful!
ReplyDeleteWe were provided with the same information the day they said my baby had HLHS - and it really seemed like our best, only option was termination. I am so thankful for the heart families (including you!) that have shared their stories that made me realize my son has a chance!
I am so glad your life has been great lately!! :) Take care!
When we received our dx for Olivia, the doctors never even mentioned termination as an option. I know they stressed the severity of the defect, but the fact that they didn't throw it out there made me feel like the odds were in our favor. Of course, now that we're past the Norwood, I too am more nervous of the heart cath than I am of the upcoming Glenn. I think it's bizarre knowing that open heart surgery is more invasive than the caths, but my emotions do not understand the rational thinking.
ReplyDeleteSo happy to hear that you have all been out having fun in the sun. I'm hoping to take the lil missy out for her first walk this week if the weather cooperates.
Hope is so cute! We will be thinking of you May 13th. I am confident things will go smoothly....they do caths all.the.time. Try to stay positive (I know, easier said than done!). Heart hugs!
ReplyDeleteCute pics of Hope. You know I'll be holding her up with prayer as the cath date approaches. Yes, caths can be just as stressful but I agree it is better than open heart surgery.
ReplyDeletehope is so sweet, picture are so cute,please try to stay positive and everything will be OK in future.
ReplyDeleteWe have been following Hope's story since September; our daughter just had her Glenn at Chidren's Hospital Boston on the 14th. She is four months old. Your comment about contemplating termination resonated with me; we, too, were given that suggestion and it leaves me feelig sad and angry to think how many others are given the diagnosis of HLHS with such a grim outlook. What can we do? I am working to be an advocate for families living with CHD, but I fear the decisions being made by those who don't have access to all the information needed to made sound decisions. I check your blog all the time, and I will be thinking of Hope on the 13th.
ReplyDeleteSo amazing how far you have come in just 1 year. Hope is such a miracle baby and she keeps amazing me. We started this journey so scared and with so many unanswered questions. Our journeys took on different paths but I am so blessed to still have you and Hope as part of my life. I know we have not met face to face but I consider you as one of my friends that will remain forever. I am so happy to have met you. I am happy that Hope is with you today and doing so well. Sami is looking out for her, I just know it. I will continue to pray that she does well and heals quickly, I could only imagine how hard it must be to see her having to go through all of this. ((HUGS))
ReplyDeleteDoug has had multiple surgeries/procedures but this cath that he just had scared me to death! I will keep you guys in my thoughts and prayers and I will definitely remember the date because it is my tenth anniversary of turning 29. Keep us updated!
ReplyDeleteCathy Roth
I got your blog from another family that I follow, but I felt inclinded to post since my daughter's name was Hope too. Isn't it just a perfect name with all they face? I will be thinking of your sweet Hope when she has her Cath in May and pray for good things in her life.
ReplyDelete(HUGS)
Carolyn Quigley
President, IHH
Oh, caths scare me, too! It's so easy as a heart mom to get into a groove thinking, 'well, it's just a cath.' But it is a big deal! I'll say a prayer for your sweet little girl.
ReplyDeleteThanks for supporting me as I begin my weigh loss journey. I really appreciate it!
Lisa @
All That and a Box of Rocks
(Eli's mom @ BCC heart boards)