Serenity: 20 weeks 2 days (Corrected Age: 4 weeks 4 days)

As you all know, it has been a substantial amount of time since there has been a blog update on Serenity Hope. There has been so much going on, that part of the reason is lack of time, and the other part is lack of motivation. It’s difficult at times to sit and make your brain list out all the details of what’s going on in a way that makes sense and is accurate.

In a nutshell, Serenity hasn’t been doing so great for the past couple of weeks. It’s hard to remember which is the last information everyone heard, but mostly, she had begun to accumulate lots of fluid -- In her chest, in her head, in her lungs, and more in the chest. The doctor has been somewhat baffled by all of the fluid, and the fact that none of the medicine seems to really be helping. And it’s not a matter of her kidneys, because her kidneys are functioning just fine. So after much thought, research, and thinking, the doctor had a meeting with us to basically let us know what he thought the problem was. He believed that the reason Serenity has been having issues with fluid is due to a possible blood clot or blockage of some sort in her veins/arteries. More specifically, he was thinking (after talking with another doctor) that she possibly had SVC Syndrome (Superior Vena Cava Syndrome). Which means a blockage/blood clot in her Superior Vena Cava.  This causes problems.

So, as of last week, he talked to us about wanting to do some tests to see if there is blood clots/blockage in the SVC and talk about what to do about it. But that if they didn’t find anything, or the clot/blockage was too big, then there was nothing more he could do for her. He would have exhausted all of his options for helping her.

In the meantime, Serenity lost her PICC line (a centrally located IV) that is very important for long-term medical care in the NICU. You see, peripheral IVs don’t last very long most of the time, but especially not with Serenity because her veins are so weak. Some peripheral IVs may only last a few hours. Without an IV, she is unable to receive fluids/nutrition/meds. And it can be very bad for a NICU baby to be without an IV of some sort for even just a couple of days. So in order to keep Serenity alive, they need a good IV. And in order to have a good one, it has to be a central IV. They were able to do a procedure to get a Broviac (specific kind of central line) into her right leg on Saturday. This was good news. However, the Broviac went bad on Monday. This was bad news. Praise the Lord; she managed on peripheral IVs for 5 days!! Today, we were faced with another scary scenario, though. In order to get another central line in, they needed to take Serenity to the O.R. They needed to do the line in her neck if they wanted any chance of success. The first attempt was on the left side near the collarbone. This attempt was unsuccessful, as it seems there for sure is some type of blockage on that side in the veins/arteries. However, they managed to get an IJ line (Internal Jugular central line). So now we have a central line. Our hope is that it stays in tact and does not clot, or stop working for whatever reason.

In the midst of all the central line craziness, the doctor believed that the best plan of action for the possible SVC Syndrome is to do Heparin therapy.

Heparin helps keep the blood flowing through the veins, and helps keep it from stopping to join the “clotting party”. ;) Any type of procedure that requires going in surgically and try to remove the blockage or clots would most likely not end well.

So we are giving the Heparin about one week to see if it is going to help. If the Heparin appears to be helping, then we will move to the next plan of action. If the Heparin does not work, then we have come to a point in Serenity’s hospital stay where there will be nothing more the doctors can do to help her. They will have exhausted every resource. 

But the good thing is, we've been getting lots of cuddle time :)