Tuesday, July 1, 2014

amazing grace...

Amazing Grace, how sweet the sound...

Jude's operation is scheduled for this Thursday, July 3rd. We will learn the definite time tomorrow. The procedure will consist of repairing the hole in his diaphragm. It will be performed by UVA's chief pediatric surgeon who has 38 years experience.

We were informed that things tend to become a little more critical after surgery for a short time so we ask for your prayers. There is also an increased chance of the need for ECMO at that time (more about ECMO on our CDH page).  Knowing that is the reason we are here at UVA, we'll be grateful if Jude should need it but our prayer is that it won't be necessary. It is a huge praise that Jude hasn't needed ECMO through this point. 

Yesterday we learned more information regarding Jude's heart. The birth was considered a trauma birth without the additional known challenges of CDH and the need for immediate intubation. As the C-section was in progress, his positioning changed dramatically and the birth became lengthy and more challenging resulting in cord perfusion (his cord was pinched). His oxygen supply was compromised for an unknown period of time and that often results in damage to the baby's kidneys, heart, and brain. Jude's heart was stunned leaving the left ventricle weakened.

Testing has not revealed any brain bleeds but further tests will be done at a later point if the need should arise. Jude's echocardiograms reveal that his heart continues to strengthen so today they have him on a trial run to see if he responds well without the additional heart meds. 
My doctor believes the medication he ordered to be administered to me for my uterus to relax (to get Jude out), in turn caused my own heart issues. But is was definitely the right choice in order to save Jude. So there are many things to be thankful for here.
Our visits with Jude consist of changing his diapers, swabbing his mouth with my milk, administering .4 ml of my milk into his cheeks, taking his temperature, and talking or sitting quietly next to him. 
A monitor that is directly connected to his heart through a wire placed in his navel allows us to know his stress levels. If his heart rate is up, we try to speak to him or touch him but if that only raises his heart rate, then we simply stand over him if he is awake so he can see us. Because he is worked on much of the day, many times touch, voices, and light only stress him more. I occasionally slip in a kiss and soak up that newborn smell. But it is fading quickly.
The extra special blessing is that though the hospital is over two miles away, the direct view of his NICU window can be seen from our bedroom window. Amazing grace? Yes! And so last night before I left him, I sang him that sweet song ever so quietly as he watched me in the dim light with those little newborn eyes. I love him so much...I can hardly stand to walk away. ~Jen    

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