We hope you all had a great Christmas! We certainly enjoyed ours as we are trying to enjoy our last little bit of time home together before our little Miss will make her appearance.
So.. Where to start!
We have many apt's a week lately to monitor this pretty girl. Some with good news and some could be better, but we are staying faithful and leaving this in gods hands.
A little over a month ago while at our routine weekly check ups with the OB I mentioned her movement had slowed down greatly (but I thought it was normal because she was running out of room in there.) Being that I was only 31 weeks it wasn't so they decided to have us do an NST (none stress test) to monitor her moving. She failed that, let's clarify what failing means for our heart warrior- She was moving a good enough amount for them but when she moved her heart rate wasn't rising as it should for a baby that was almost 32 weeks so they sent us to the hospital the following day to have a Bio Physical Ultrasound (they monitor heart rates, movement, fluid, and breathing) as well as to do a follow up NST. Her Bio came back 8/8 so we were good there, but her NST was the same, boarder line where is should be. Assuming she just may be a little behind and not following a normal chart they sent me home and set up another follow up NST a few days later at the office again. While there she again failed only this time it did matter because she was a ways behind where she should have been for now 32.5 weeks. My regular OB (not my specialist) decided to be safe we are now going to do weekly Bio Physical U/S and skip NST's unless we don't pass the U/S as it is most likely just her heart condition causing her to have her heart rates be where they should during movements. With that we have been having weekly U/S done and she passes each time! She has been stubborn and likes to make them difficult and come close to failing (as she has a list of things that need to done in a certain time) but she finishes up just in time.
Update on our last cardiologist visit- she didn't get the best news. Our very first apt there when we had the echo they mentioned her Atrial Septum was a little small but they were just going to watch it and it was nothing to worry about right then.
When we went back a few weeks ago that had changed. She has an almost fully restricted atrial septum now which gives her oxiginated blood so being restricted it will cause breathing problems after birth. That now means within a day if not the day of delivery she will need to have a cath procedure to open up that wall and help her make it to her first surgery where that wall will be completely taken out anyway. With that restricted septum, and underdeveloped left ventricle the blood doesn't have the opportunities to flow the way normal babies blood does through the heart so that is causing back up and pressure which has lead to heart being swollen. Again being swollen is normal in HLHS babies but it can still be dangerous if it swells to big and her's was getting to the point of possibly being to swollen so that is being monitored for now. (Photo above shows where her RAS is. The two arrows point to the restriction and wall that will be taken out.)
So this is what our road has lead us to but we are again leaving it in gods hand's as he is the one in control of it all.
We will be able to have a good understanding of exactly how extensive her case is and what they will need to do and when after she is born and has an Echo done on her heart and see's her surgeons and cardiologists.
Be sure to watch for our next update as it will most likely be announcing her arrival!!
Continued prayers and again Merry Christmas and a Happy New Year to you all! :)
