We had another echo up at PCMC on Friday. After another nerve-wracking 30 minutes of examination, they assured us that there were no new concerns. Clara's heart is looking just as they expected and they have the additional information they need to prepare for her first surgery. Whew.
Kim, the nurse coordinator, took us on a tour of the CICU and surgical units. Within a few hours of Clara being born, the PCMC team will pick her up from the U and admit her to the ICU at Primary. The first few days, they will do some echos and x-rays, as well as a battery of other tests, and prepare for her first OHS (open heart surgery.) She will be allowed visits from mom, dad and grandparents at (mostly) all times, and other older family members accompanied by us. We will be able to hold her and I can probably feed her during this time. Once the fluid is cleared from her lungs and the surgery schedule allows, she will leave the ICU for surgery. That takes most of the day, when you factor in the prep and recovery time. Once she returns to the ICU after surgery, we won't be able to hold her for about 3-7 days, but we can still visit and spend time with her.
Once Clara stabilizes in ICU, she will be transferred to the surgical unit. This is the last step before going home!! We will probably be there for another few days, maybe a week, but she will be in a private room that Todd and I can stay in with her.
While we were visiting the hospital, we got to meet a few of the ladies from the IHH Forum we've connected with. It is CHD Awareness week so they were handing out cupcakes and information, and it was great to meet a few of them in person. I have no doubt they will be another important part of this process, and they've already been such a support.
We also talked to another geneticist and we enrolled in a study of CHDs. They will test Clara, Todd and I and use our blood in future studies to research the causes of heart defects. For other readers of The Immortal Life of Henrietta Lacks, don't worry: we thoroughly read and understood the release forms and what will happen with our 'parts' :)
No comments:
Post a Comment