I am admittedly a fan of Grey's Anatomy and Private Practice...I have watched both shows since they began and even though I usually end up in tears at some point of each episode, I can't seem to stop being a viewer. The past two weeks both shows have portrayed a baby put on ECMO. Now if I had seen these episodes before June 2011 I would fortunately have no idea what ECMO actually was. But the fact is that my strong, beautiful daughter had to be put on ECMO in order to save her life and these episodes had me reliving the days spent in her hospital room as we prayed for a miracle.
ECMO stands for extracoporeal membranous oxygenation and it is a last ditch effort in order to prolong a patient's life by using a form of heart and lung bypass...basically it is a machine that does the work of the heart and the lungs by taking all of the blood out of the body, oxygenating the blood, and then circulating it back into the body. In my opinion it is a miraculous form of hell - it saved Stella's life but it was some of the darkest days any of us have ever seen.
This is the real face of ECMO. It is not a simple procedure like these shows portrayed...it is a long, emergent surgery. So emergent that Stella could not be taken to a regular OR instead her ICU room was transformed into the operating room and the entire ICU hall that she was in was shut down (no parents/visitors could leave the rooms if they were in the room when the procedure started and no parents could go back to their baby's room while the looong procedure was happening.) The typical protocol at the CVICU is to have 2 patients to 1 nurse but while Stella was on ECMO she had 2 nurses to just herself...one that had to be sitting in the room to monitor her EVERY MINUTE. The machines that she was hooked up to overtook the room and there was barely enough space for the nurse that was required to stay in there, let alone her parents and our many family members/supporters.
Many babies who are put on ECMO stay on the bypass machine for up to a week (it is only a very short term solution and can not be used much longer than 7 days) and too many babies who had to be put on ECMO don't survive. We were very lucky that Stella was only on ECMO for 24 hours and that she was able to gain enough strength to have her 2nd open heart surgery. We knew that the odds were against us and the doctors made it clear that Stella's chance of surviving her 2nd open heart surgery in her condition was very small. We spent the two days of back to back procedures (ECMO and open heart) praying for God to give Stella a miracle or to take us instead. (The most realistic portrayal in Private Practice was a slight glimmer of the emotional toll it took on the parents when the mom was praying that she would gladly give her life for her baby to live.)
Thankfully the days of ECMO and open heart surgeries are behind us; although the days we spent in her CVICU room still feel like they just happened. Today Stella had two wonderful check-ups and we were able to breathe a sigh of relief as we talked to her doctors about her progress.
Stella saw her neurologist, Dr Sweetman first, and she was very pleased with Stella's progress developmentally. Stella was in a great mood and she waved "hi" to Dr Sweetman and was very talkative during her visit. Stella has not had any more seizures and she is making progress in all areas so we do not have to go back to her neurologist for 4 months.
Stella then had an echo and a cardiology visit. Her echo was GREAT! Her gradient was between a 2 and 3 in all areas (normal is close to zero and this number has previously been as high as an 8) and her pressures were at 20 (normal is anything less than 30!) Her cardiologist was very happy with all of her results and he even cleared us to travel to South Africa to visit Stella's Uncle Scott, Aunt Amber and cousins (hopefully we'll go in July). We'll see the cardiologist again for echos and check-ups in March and June but as long as everything remains stable Stella is allowed to travel.
I watched the most recent Private Practice episode tonight and even though both shows "sugar-coated" ECMO, they also reminded me how much of a blessing Stella's life is. We have a lot to be thankful for in regards to how Stella is developing and her overall health...she has surpassed all of her doctors' expectations of a patient labeled as an "ECMO baby" and I am so glad to have the chance to watch her as she continues to reach milestones and exceed expectations.
