One of the reasons why I started this blog to being with is because when I typed in ‘HLHS’ to Google, lots of stuff came up. Most of which wasn’t exactly positive. There was a reason why our cardiologist warned us and specifically said to me “No GOOGLE.” Yeah. Well, I had so many questions I didn’t know what else to do. What is HLHS? What causes it? Why did this happen to us? Was the medication I am on the cause of this? Did I bring this upon my family? What will she need to live? What are signs of doing well? What are the signs of her not doing well? How much time will we have?
As you can see, I had thousands of questions – and no one to ask them. I wasn’t connected with Sisters-by-Heart yet, or Heart Mamas. So I began writing out how I was feeling and what the doctors were telling us. Eventually I did get connected with Sisters-by-Heart and began to exhale a little. Enough to enjoy the remainder of my pregnancy anyway. I learned about the Norwood, what we would need in the hospital and what questions to ask the surgeon. I joined Heart Mamas, and spent the last few months of my pregnancy leaning on other moms hope and faith.
When I gave birth, one of these Heart Moms came to see me at Brigham and Women’s, so I could meet her son and see what life could be like. Her dad came with her and gave me additional support that I didn’t even realize I needed. I knew to push to have her extubated when I knew she was ready because these Mamas told me about oral aversions. I knew to ask about certain levels, what we could expect for recovery and knew ahead of time the fight I would have to be able to nurse her.
I met with another heart mom while her daughter was recovering from her fenestration being closed. Her daughter who was running around in the playground outside the blood labs. She also gave me hope and companionship while we were inpatient. Another Heart Mom met me in the lobby with her son, and we spent time in the CICU together. Another Heart family shared their son with us, who ended up passing away the day we were discharged.
These small moments, sharing the lovely world of CHDs with these incredible parents has been very rewarding. I have been fortunate enough to be part of some rewarding personal work, and these moments are no exception. Having coffee with Seraphina’s mom and commiserating about feeding issues such as will our kids ever gain an ounce? Walking the halls of 8 East trying to soothe an uncomfortable baby. Around and around we go.
Recently I had to let go of the Heart Mamas page after getting to emotionally involved in some of the debates that were going on. Yeah, I had that much going on that other peoples’ shit was pissing me off! I knew I had to cut ties otherwise I would be driving myself and my family insane about anti-vaccinating, breast-feeding crazy people who were waiting in the bushes for the word ‘circumcision’ to pop up and then they would POUNCE. It was…ridiculous, really. I am glad I have connected with the moms who I respect, admire and feel like I can relate to.
I am grateful for anyone who prays for our children, for putting their fears out there and for sharing their life with CHDs with me. I know I don’t get along with everyone, nor do I agree with the decisions that people have made. I do know that when I post openly and ask for help, they are there for me in ways that others can’t be. They know what it feels like to hand over their child to a surgeon who was going to break open their chest, put them on ice and stop their hearts. They know how pure fear and adrenaline will keep you up all night holding that baby before surgery the next day. They know how it feels to give birth and not have a baby share your room. It still brings tears to my eyes when I think about looking across and seeing my husband with our daughter in the CICU from my window at Brigham.
A woman who also worked where I worked had a son who needed open heart surgery his first weeks of life. She would check in with me at the office and lift my spirits just by saying hi. She took time out of her day and shared photos of her son with me so I could get an idea of what to expect. When I lost my job she was still there for me, and still is part of Izzie’s cheering section.
Heart mamas get it. I don’t feel judged when I post about overreacting in an ER. I usually get some really interesting stories from it! I am so grateful for these women who share their children with me and for helping me be a strong advocate for our Isabelle.