Here's the long version of how we ended up planning for a major heart surgery for my sweet baby. Last year during a visit at the pediatrician office, a heart murmur was detected in Gracie. This is very common in kids and we decided that we would monitor it over time and if it continued or progressed, we would investigate further. In November, we visited Children's Mercy to get plans underway to schedule a minor procedure for a hernia that she has had since birth. The surgeon wanted to have her cleared through cardiology and make sure the murmur was benign before he put her under anesthesia for the first time. I have a history of congenital heart issues that were repaired when I was 4, and I agreed that this plan made perfect sense. About 4 weeks ago, Grace and I visited Dr. Romans at Children's Mercy to clear her for hernia surgery and her visit went differently than we planned. Within a few minutes of the visit, we recognized that her body was struggling with adequate blood flow. Her blood pressure was very elevated and the pulses in her feet were basically undetectable. They ordered an echocardiogram (an ultrasound of the heart) and before we left the appointment, we were getting scheduled for a major heart surgery. Not the best day we've had... Grace has a significant coarctation of the aorta, the same congenital heart problem I had a child. After a long month of testing and many, many visits, she is scheduled for open heart surgery on March 31st. The surgery plans began as a little less complicated surgery that would be performed off heart/ lung bypass and the incision would be done through the left rib cage, giving her a more cosmetically ideal scar (like I have). After all of the testing and many discussions with her Cardiac team, we've realized her heart defect is more severe than they typically see, and she is going to have an open chest approach through the sternum. The surgeon feels this is the safest approach for her surgery and will give him the most control during the surgery to fix the issue (including heart/ lung bypass). We have studied her scans and have had extensive discussions with the doctors and agree that this is going to give them the time and controlled environment in the operating room to do their best work. The hospital stay is going to likely be a few weeks. After the surgery, her plumbing system is going to have to "re-learn" the new blood flow pathways and her recovery time is going to be dependent on how well her blood pressure responds to this new pathway. We will likely be in ICU for the large portion of the stay while IV blood pressure medication is needed. Once she can move to oral medication, she will be moved to a regular hospital room until her chest is stable, pain is controlled and she is ready to go home. She will have significant activity restrictions for the next several months while everything heals inside, outside and her blood pressure continues to find it's new way. Covid restrictions mean no visitors while we are inpatient, including no visits from Violet. We are incredibly blessed to have so much family and friend support and we believe that Gracie is fearfully and wonderfully made. She is a child of God (she'll sing it to you in her sweet little girl voice) and He is her Great Physician. We are believing for a successful surgery with a complete repair and in her typical fashion, that she surprises everyone with her tiny, tough little self. These are the things we need (many of you have asked what you can do for her/us) and while I don't really know what we are going to need, this is what comes to mind: - Specific prayers for: Wisdom for our surgery team; Peace and sleep for Grace, Vi, Marshall and me; Pain control after surgery; Blood pressure control immediately after surgery (this is imperative for her recovery); No infection. She is mostly concerned with the food options - like mom, like daughter. - Give my big girl some extra love. Our girls are very close and they aren't used to being away from each other. Violet isn't able to visit the hospital so they are going to miss each other BIG time. - Ideas to keep my little wild woman entertained for the next 3 months. We're talking very limited activity and we know that is laughable. She wears roller skates instead of shoes at home. Help me! I'm...not...that...mom... We need craft ideas, project kits, I don't even know. - Continued provision for our businesses. As two small business owners, being away from work for extended periods is really difficult. We're going to have to balance time and make sure all of our priorities are given attention. There is no FMLA or paid time off when you are self employed. I am taking leave from my hospital duties at the end of this week.
I plan to update this site during our stay and in the post-op period so those that want to know how things are progressing can keep track. We love you all and thank you for your support up to this point. We know that you all will carry us through the next few months. I can't wait to have the biggest 4th of July party ever this year to celebrate the end of Gracie's restrictions and the end of Covid restrictions!!! XOXO Sarah
Today marks a huge milestone in Gracie's story! Today is 12 weeks from surgery. 12 weeks was our initial planned recovery time. 12 weeks was our expectation of limited activity. 12 weeks was our timeline for having to keep her busy but still. 12 weeks was going to include many more tests, visits and scans to ensure surgery was successful and she was safe to start playing like a 5 year old again. We've come a long way in 12 weeks!!!
For those that have fervently prayed and lifted her (and our family) up during this time, we are forever grateful. We are blessed beyond measure!!!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Gracie Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Gracie's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
