Celine Dion A Mothers Prayer Lyrics with pics

Carrie Underwood - Jesus, Take The Wheel

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 heart...like 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.

Lets Talk Craziness.......

So we all know how my updates have been lately...sporadic..hehe. Well Let's talk first about Mia who is still doing well but threw a curveball at us 2 weeks ago. Around June 13 Mia began decreasing on her feeds for quite a few days. After observing her for about a week I decided it was time to see the cardiologist. The cardiologist said her heart looked good from his perspetive but he thought we should spend a few nights in the hospital to be observed. Hypoplast kids have a tendency to turn for the worst very quickly. So we did. We stayed at Ochsner for 3 days and let them observe her and they found out that she had terrible reflux. Her eating had stopped due to esophagitis and they said it would be a progress and not a cure overnight. They put her on Bethanechol for espohageal sphincter spasms and prevacid solutabs 7.5 daily. It has been over two weeks and we are not seeing any improvement at all. Hopefully, we can get her the correct regimen of meds so she will eat better and have more precise weight gain. We ended up going on our family vacation this year to destin...very hesitant but we went and it was a great time. Ray and I barely saw each other because we had to take shifts in the room. It would have been better if we had more family that was willing to help. We kinda were under the impression that we were going to get more help..but boy were we wrong. I think sometimes people forget how good thier lives are and they tend to forget that sometimes some of us are going through something that could use a bit of downtime. This journey began 8 months ago for us and we have been running and banging our heads on the wall ever since. Does any of this scream vacation? People need to understand that our lives have enveloped a new sense of NORMAL...we and our family will never be normal any more we will have to become a new sense of normal that works for us. So the vacation...not so much. There were a few goods that helped us out so that Ray and I could go out and have dinner and re-group for round 2. So we are now back home living in our new normal reality and all is well. Mia has a cardiology appt on Friday and they both have thier first set of immunizations next week...whahhhh. So sad she has been through enough already. Everytime I turn around she is getting poked on. We are settling into our new house more and more. Just when we are completly comfy we will be back in Philly for Mia's next surgery. Which I hate!! I am getting those butterflies all over again in anticipation. Since I opened this blog as my "open journal" for friends and family I have a few things I want to discuss. Lately, I have really been realizing how different my life is and is going to have to be for the next few years. I am wondering if all of my friends and family realize how much we miss them and doing things with them. We were the family that never stopped always going and hanging out with everyone. I would never change this for anything...and I want to stress that this is not for pity it is simply how I am feeling. This has been a whole differnt ballgame...with 2...wait 3 kids and with mia's heart all together. I almost feel bad wanting to get away for a few hours I feel like i should be with her. Anyway enough sadness...i am super excited for the show Boston med coming on. They are having a show with a baby boy, sam who was born with HLHS and they followed his mom through her pregnancy. The awareness is bittersweet!!! If you have a friend or family menber on this journey...be supportive...talk to them. They are crying inside hoping that for one second they will wake up in reality and the word death will not consume them. I miss my life, my friends, my family...but I love Mia A lot and I am keeping this to show her when she is older how much I fought for her. I hope all my other heart moms are well and each one of your children holds a dear place in my heart. Enough for today...I need to buy my tissues for tonights BostonMed!