Let the Roller Coaster Begin!

Emmett has been at Children's Hospital now for about three days. He is a very peaceful, tolerant baby who looks huge compared to what are mostly preemies in the NICU. He is out of his incubette and up on his own tiny bed, hooked up to a few machines to monitor all the vitals and administer nutrition, since he is not allowed to actually "eat" before surgery. He has a nice little supply of breast milk at the NICU freezer waiting for him. He is not on oxygen (breathing room air) and has a steady stream of visitors that he frequently smiles for.

Day One had the doctors scheduling him for surgery for a coarctation repair on Wednesday. They were highly confident that the left ventricle would do its job successfully and the surgery would be simple and completely effective. After a Monday morning case conference (all the cardiologists and surgeons meet and discuss each heart case to get everyone's input) they decided to bump the surgery back to Thursday. They decided to discontinue giving him Prostoglandin, which they had been administering to keep his Ductus-Arteriosis open. Since the Ductus normally closes after birth, artificially keeping it open had kept the blood flow in his heart operating smoothly. But it has also kept us from knowing exactly what his heart is capable of on its own.

It's been around 36 hours since they discontinued the Prostoglandin, and Emmett has had regular echo-cardiograms (he finally got to meet Kelly!) to see if we are making progress on the ductus closing. The last echo showed that the pressure in the right side of the heart may be preventing the ductus from ever closing completely, so last night they administered Nitris Oxide to help facilitate the closing. Some time later this morning, Emmett will be getting another echocardiogram to determine if the nitris is working and the ductus is closing. When that happens, we will see for the first time what his heart will do on its own.

Sometime during all of this process, the doctors came back with a new opinion that there is not, in fact, a coarctation of the aorta. They now believe that the smaller left ventricle is a result of the combination of a smaller than normal mitral valve, aortic valve and aortic arch. Why are these valves smaller than normal? No real answer or diagnosis on that one.

On one hand, this is good news. No coarctation means no coarc surgery. On the other hand, the combination of smaller valves will require some kind of surgical fix if his heart cannot function on its own (without the prostoglandin when the ductus finally completely closes). What will that surgical fix be?

That's what we are waiting to find out...hopefully today.

We are in the Lord's hands and he has carried us through the last few days with a peace that I would have thought would be impossible to experience. Of course we are scared and frustrated, and can barely keep up with the constantly changing medical landscape. It's almost impossible not to pick him up and hold him every time I'm there (which I'm not allowed to do), and I'm dying inside that he hasn't eaten for three days. Despite all these reasons for a perfectly justified complete emotional breakdown, we are finding that the comfort the Spirit brings us seems to have no limits, nor does the love and support of our family and friends.

We know that Emmett will come home soon. Our goal is to bring him there as whole and healthy as possible and the amazing doctors at Children's have the same goal. That brings us into the new day filled with hope and confidence that we will get his little heart figured out. Keep up the prayers...they are surely making a difference.