Saturday, July 3, 2010

Reflux is ruining my life...oh and Mia's

So yesterday was our fourth cardiology visit with Dr. Young. She has echo's and ekg's every 2 weeks. The echo looked good with no change since sugery...thank the lord. Mia is having a complication caused by the norwoord with her tricuspid valve which is between the right artium and right ventricle. What happens is since the sano shunt was tacked into the right vent it puts a bunch of pressure on the right side of the heart which is what happens with hypoplast..kinda comes with the territory. The right side is working so hard that it expands to allow for more blood flow through the heart. Then normally with the glenn when the shunt is removed, it shrinks back up a bit so there is less backflow through the valve. So her tricuspid is termed "leaky". They claim from her echo after surgery there has been no change. Dr. Young said it is mild and he does not se a problem arising from this as we approach the glenn. If the glenn does not help the valve at all she will need valve work done during the fontan, which may cause her recovery time to be longer. This "could " potentially cause heart failure so it is being watched under a careful eye very closely. The heart function...squeeze everything else looked great according to Dr. Young. Thats great news for us. With a sano shunt around 8 weeks is where things start to happen. While we are battling this new enemy REFLUX...Mia continues to climb the growth chart...not sure how but is weighing in at a whopping 9 pounds 1 and 3/4 ounces...YAY Petunia Piggie!!! Not sure how you gain weight when you refuse a bottle at every feeding but okay I will take it. Dr. Young said as long as she is climbing the growth chart and not staying on somewhat of a level we will avoid any intervention. I hope they can find a medincine that will work quickly and give her some relief. When she eats, she takes a few sips then begins screaming then she pushes the bottle out of her mouth and refuses to eat any more at all. So stressful for us. Make me so sad to see her starving and not being able to satisfy her hunger she will only eat enough to settle herself and become content. Every once in awhile she is so hungry that she will just scream through the entire bottle (over an hour to eat) and eat all of it. A mere 2-3 ounces. It has been over 2 weeks since strting the prevacid and I see very little improvement. As long as she is gaining...maybe I should not complain. She is now in the 10th percentile for growth I laugh while saying this because Mia and Madden are still small in comparision to a normal 9 weeker. They are both still wearing newborn clothes!! I have a follow up with Dr. Morris (GI) on Wednesday morning. Today I want to ask everyone to say a few needed prayers. The first one is for Emma Scott, who Ray and I as well as my family had the pleasure of meeting at CHOP. Emma has lived in the CICU all of her life except 2 weeks when she was able to go home. Her mom christina is so strong. Emma was placed on the transplant list a few months ago and still needs a yesterday. She was placed on full life support yesterday as her heart needs major rest. She also has HLHS. Please pray that her heart comes soon so that she can begin her road to recovery and go home with her family. We love you Emma. The other is for Zoe who is one of Mia's heart bff's. At the cardiologist yesterday, her echo revealed that her heart function was mildly decreased. They were not sure if it was due to the heart muscle....pray that it is not or due to the srtain on the heart. They hope the function will resume back to zoe's nomal after the glenn...pray. They were unable to start her on any meds for heart function due to her low blood pressure. These two are true warriors in my eyes. Everyone knows how much I always talk about the heart babies and how they hold a special place in my heart. I also pray all the time for them and thier families. Well it's time to get a running start for today.

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