Changes are Happening

I am going to start these updates from yesterday, which is when things really started happening!  As time allows, I am going to try to add the email updates that I have made since Ella was born so that all of the updates are in the same place.  So, if you are noticing that you are reading things that you have already seen, that is why!

The update below is an email update that I received from Abbey yesterday afternoon.  I am going to add a little to it so you know who she is talking about.

NEW PLAN!!

Ellen (nurse practicioner) just came in and talked with me. She said that Ella's chest xray looked the same. She still has the fluid and the heart has not gotten any bigger. An enlarged heart can indicate signs of congestive heart failure. Hers is **slightly** (take note of this word...it is only slightly so nothing to get excited about) enlarged which because of all the work it is doing. It has always been this way, so no big changes with that.  That to me is good news. Another doctor read the echo, but Ellen wants Dr. Goertz (cardiologist) to read it for consistency. I asked if they thought they saw something new, she said no, but that they thought that she had a small hole. We already know that it is not small. Ellen then called Dr. Goertz and he is in Hays, KS and she is not sure what type of access he has to look at the echo or when. Basically she said that we could be sitting around waiting until thursday before we hear back from him. Her concern is that Ella has not shown any improvement with the high preasure air flow. In fact, she thinks that she is seeing more 100's then before, which sitting here and watching, I agree. She had moments of greatness over the weekend, but it is not better. In the meantime, Ella has serious break down of her skin. Ellen does not know for sure if it was because the anitbiotics or the high amount of calories. She said that they have never had a baby with this amount of calories before.
SO, Ellen wanted to know what I was thinking. I basically told her that I am frustrated with the waiting. She wanted to know how I felt about waiting on Dr. Goertz or if I could get her into CHildrens. I told her that I would send her if that meant we can get things moving. I told her my concerns which are as follows:
1) How long before she is not considered stable
2) Poor weight gain even on extremely high amounts of calories and MCT oil
3) Skin break down
4) fast breathing continues
5) overall issues are a result in heart not properly functioning which is in return causing other issues
6) general discomfort to Ella
7) impact of extra calories on digestive system
 THIS LIST COULD GO ON

At the end of the day, do I want Ella to have surgery, no...but if she does have to have it (and she does) I need her to be at her most optimal health. If that means she needs to be 9 pounds then fine, or does that mean we need to do it now before she is even more compromised, ok.

Here is the next step, I feel like Ellen and I are on the same page. We are going to see if we cannot get Ella to the NICU at Children's Mercy. If she is there then they have cardiologist available at all times to actually look at Ella. She will go under the VSD so that puts her immediately on the cardiologist radar. They then can do and be responsible for any testing, interventions or even surgery and will be able to follow up with her immediately. I like this plan for Ella for the fact that she will be (as dad put it best) in their road. They will have no choice but to be constanlty checking in on Ella.