When I first found out about Riley's heart I googled and found a lot of blogs. Many of those blogs just ended and left me wondering how the child was doing. Especially when we found out about Riley's intact septum I found a few blogs for children with intact septums that really left me wanting to know if the children were still living, etc. SO, I did not want parents to google looking for inspiration and find my blog that I stopped updating and wonder what was happening with Riley Marie. Especially if they googled HLHS with intact septum trying to find a story with hope to grasp on to. Riley Marie has had a VERY VERY hard first 3 months of life but she has been stable for a few weeks now and is doing well. Riley has a facebook page called Riley Marie's Heart that we keep updated. Please feel free to follow her progress there!
I do want to leave a catch up of what has happened in the last 3 months. Riley was born on March 9th and had an atrial septostimy right after birth. She had her Norwood which was considered a high risk Norwood on March 19th. She came back from surgery on ECMO and was on for 4 days. They took her off of ECMO due to severe bleeding. She was not ready to come off ECMO and struggled to keep her sats up for the next week. That week was filled with many events where they would push epi and fluid to bring her bp and sats back up. On April 1st she was unable to keep her o2 sats up even with meds to the max and vent setting to the max so she went on ECMO for the 2nd time, this time neck cannulated. She was on ECMO for 16 days. During her ECMO run she had a heart cath which was a high risk cath with her on ECMO. They did not find anything that they were able to fix during that like they had hoped. The night that she came off of ECMO they did a head ultrasound and found that had had a brain bleed. After hooking her up to the EEG they found she was having seizures. She started a seizure med that stopped all seizure activity. The brain bleed had stopped but they decided to put a resevior in to be able to "tap" into with a needle to take excess fluid off of her brain. She continued to need the resevoir tapped often so they eventually put a permanent shunt in to drain the excess fluid into her belly. An MRI showed that Riley has brain damage in the areas of vision and gross motor skills. As of right now she is moving all of her limbs and focusing her eyes. The Neurologist is very impressed by her and said that it shows that you never know with a baby what their brain is capable of. Riley is currently in the step down unit and we are starting parent care to go home soon. She will have her 2nd surgery later this year. Riley Marie is nothing short of a miracle. We are so grateful for the drs and nurses who have taken such good care of our girl. They never gave up on her!
