Our story begins a few years ago...
Our family of 3 was going to be a family of 4 and we couldn't be happier. The 3 of us found out that our new addition would be a girl! I was beyond excited and I'm pretty sure her dad and big brother were too. After the sonogram I was called back to talk to the doctor (Routine right? No worries.) I didn't imagine anything would be wrong. I did everything in my power to be the healthiest version of myself so that my baby would be also. So when I was told that my baby girl had a cleft lip and a rotated heart it felt almost indescribable. If you're a parent of a child with a birth defect, you know what I'm talking about. Scared, denial, grieving in a way. We went through an array of tests, ups and downs. We found out that Mollie had several holes in her heart, also known as VSD.
Fast forward to birth that is another story in itself (who's isn't right). We were under the impression Mollies holes had closed. We were so excited for that, and that she could feed pretty normally! She was beautiful. Another blow came the following day when we were told that she did still have multiple VSDs, one being moderate. She had issues with gaining weight for various reasons related to her heart defect and her submucous cleft palate. She was closely followed throughout her first year by an amazing group at Children's Hospital, Pittsburgh. (Cardio, Neuro, Cleft clinic) Mollie had lip repair surgery at 6 months. Her first year was scary but we absolutely felt so blessed to have her and wouldn't trade her for the world. We made it through together.
At her one year cardio appointment her M.D. felt the need to present her case in front of a team of cardiologists so that they could make a decision as to weather she would require surgery or not. Thank God the answer at one and at two years old was NO!
Mollies has been a normal functioning little girl that melts our heart and tests our patients. I was finally comfortable with the cardiology appointments because I could see how well she is doing. When we got the news that one of her valves was under stress due to the abnormal blood flow in her heart I was blown away. I was in denial in a way. Again, Mollie was presented in front of the pediatric cardiology team in Pittsburgh. This time it wasn't good news. She is scheduled for open heart surgery the end of May. The surgery isnt a guaranteed fix but the theory is that preventing the backflow of blood through the VSD will put less stress on the valve leaflet.
Im terrified. We love her so much. Her dad and I will both be on unpaid FMLA for her surgery and recovery, me for a month or more and him for 2 weeks. I left my job as a long term care nurse to do pediatric private duty less than a year ago (hence the no paid leave). I love what I do, but during Mollie's recovery I need to be home full time to nurse her. I hated the idea of asking for help, it's hard to even accept help- let alone ask. I just know that we are going to be in a tough place and if this were to happen to someone else, I know I would want to help that family. If you can donate monetarily, offer prayers, or words of encouragement it is appreciated more than you know. If there is any extra money avaliable after our ordeal, we plan to continue to donate to children's hospital of Pittsburgh so that maybe another family can worry about their child and not so much finances.
**Update** Heart surgery is postponed because Mollie will need neurosurgery first. Yet another peice of the puzzle and another devastating blow. We found out that Mollie has fused vertebrea in her neck that is causing extra movement in the non fused vertebrae. This came as a complete shock ans was caught by chance at a routine cleft clinic appointment. The fusion with instability is very dangerous because a minor neck injury would cause spinal cord compression (frequently life altering damage or even death). Thank God this was caught prior to her being intubated for heart surgery. The road ahead will be long and difficult. Continued prayers appreciated.
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