Sunday, November 4, 2012

At His "Pace"...

Nothing about Noah's story has been "normal". Nothing has been typical at all, in fact, from the day we found out we were pregnant, nothing has been regular. Most people find out they are pregnant a few weeks into the pregnancy. Well, we didn't. We found out 20 weeks in. Within 1 week of finding out we were pregnant, we found out we were having a boy and we found out he had a CHD. (Congenital Heart Defect) Hypoplastic Left Heart Syndrome (HLHS)
Nothing about this boy has been easy or normal..(except for loving him, that has been easy as ever and as normal as can be) So, here we are, 1 month and 11 days into his life and he is still calling the shots. Well, him and God.
So, Noah is doing well today. We have some news about his progress I would like to explain! God and Noah have been taking us on a long journey post surgery. Today we found out that he will need a pacemaker put in. Noah has been on and off of a pacemaker since he came out of surgery. This can be normal for an HLHS patient. He would do well for a week off of the pacemaker and then he would need it again. So, today his heart rate went back down and he had one of the cardiologist monitor him most of the day. After all the back and forth they have decided this will be the best thing for him.  The procedure will be tomorrow (monday) or Tuesday. This is a very simple procedure, to put the pacemaker in. Nick and I are relieved to have something to move forward with as we have been waiting for weeks to see progress and be able to measure that progress. So, Noah will get the pacemaker. It is an amazing device and will only kick in when his little heart needs it. This gives us some confidence as we move forward that his heart has support. His heart and the shunt that was put in during his first surgery (norwood procedure) are doing well. He needs the pacemaker to help his heart communicate better basically. The procedure to put in the pacemaker is a simple surgery. Noah still has the ventilator in, they have stopped his feeds for now and he is ready to go when they are ready to get him back there to do the surgery. He will not have to be on bypass or anything so that is good. This is not nearly as invasive or hard on his body. This will be a good step in his recovery process and we are confident in his caregivers, doctors, nurses etc. They know Noah and have taken care of him since day 1. They know what's best for his little heart and his body. They are so excited to see how he will progress after this pacemaker placement. His nurse today was so excited to tell me that it won't be long now til we see him without all the tubes in his face. :)
SO...please pray for this procedure to go smoothly. Pray that this will help get him to that final step to true recovery. Nick and I are thankful for your prayers and support as always!
Besides the pacemaker news, his stats are good, they are weaning him off the vent slowly, he got rid of a chest drain, he loves to be swaddled, he was going up on feeds until they decided on the pacemaker, but he'll go back on those after the surgery.
overall, this pacemaker is good news. It means that he will have the support he needs, we can move forward and see what GOOD things are ahead for our boy. I CANNOT wait to hold this baby boy and that looks closer now than ever really!
my baby boy is so handsome. I can hardly stand it. I need that boy in my arms :) :) :) Pray us through this pacemaker surgery please! Let's pray him up and get him through this next step so we can see even more amazing progress! My renewed and refreshed spirit is holding strong and I am thankful for the prayers that have gotten me here. I'm holding on, so tight. I know that God's plans for this boy are BEYOND my comprehension and understanding. There are lots of things ahead for our family, because of this boy and his courage, even as an infant, to fight and hold on to his maker. To God be the glory GREAT things he has done!! And will continue to do.
Thank you for holding up my arms.
Thank you for loving my family
Please praise God and thank him for his covering.
Noah's mommy

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