Pray for Lilly: Something other than her VSD

We saw Dr. Hess on Monday, and got some not so wonderful news. She said that her opinion is that we need to go forth with the surgery and do it before Thanksgiving. I know that I have been preparing myself for this, but it is 100x harder when you actually hear it come out of the Dr's mouth. I wasn't expecting her to say that, at all. She said that she would have to present it to the other cardiologists that are affiliated with Cook's next wednesday before we have the final go ahead. She gave her the "ok" to have her sedated ECHO, also.

So, we had Lilly's sedated ECHO today. It was definitely a little stressful this morning. She couldn't have anything to eat after 5am, so after feeding her at 1am, I got up again at 4:15am to feed her. Luckily she ate well and her little tummy stayed full until about 10:30 or so...which is right after she was given the medication, so it worked out.

Once we arrived at Cook's, they checked us in, did her vitals, and then gave her the opportunity to go to sleep without the medication. Of course she was wide awake and even me laying with her in the dark didn't put her to sleep. Stubborn little thing! : )

Around 10:15 the nurse gave her a half dose of the medication, and after about 20 minutes of fussing and gagging (apparently the medication tastes horrible), she was out like a light. They did the ECHO, which took about 45 minutes or so, and then woke her up and let her have a bottle of breast milk. They were supposed to see if she could hold down clear liquids first, but since she got only a small dose of the medicine and she didn't even come close to wanting the Pedialyte the first time we offered, they allowed her a full 3.5 oz of breast milk. She drank it, and promptly went back to sleep.

After she took her bottle they had a cardiologist, Dr. Siu, come in and review the ECHO with us. I'm not sure if his news was good or bad. He said that he feels there is no evidence that shows Lilly's slow weight gain is due to her VSD and that he doesn't feel she needs the surgery. At least not now. Her VSD is kind of shaped like a funnel. It's about 7mm on the left side and 3mm on the right. The pressue on the left side is at around 129 and at around 27 on the right. That is GOOD. If it were opposite, we would be in a whole different situation. There is a valve in front of the hole on the right side that is helping with the blood flow and actually decreasing the amount of oxygenated blood that goes back out into the body. Of course this is just HIS opinion.

Awesome right?! Yes it is, however the scary news is that he thinks it is something else in her body causing her to not gain weight. He named off a few things such as anemia, cystic fibrosis, reflux issues, gastrointestinal issues, etc. He has no idea what it is, but highly suggests that we get with Dr. Nash and start to research our family history and other things that might be causing the slow weight gain.

So basically, we are back to square one in my opinion...if we agree with this Doctor. We have no idea right now what is causing it. Yes, it could still be the heart, but he put up some very good evidence that it's not the heart causing it. It won't close on it's own since it is not a "muscle hole", so eventually she may need the surgery, but as of now, he thinks that would be jumping the gun.

I really don't know what to think. Of course I have already started to blame myself for everything that is going on. I know that will only cause more stress and more pain, but I can't help but think that it's something I did or am doing. I just don't get it. I follow her schedule, I give her her meds, I offer her milk/formula when I feel she may be hungry. I just don't get it. I don't want this to be something that is not curable or something that is going to cause heartache her entire life. I don't want to spend days at a time in the hospital. I know that I will do whatever she needs, and I will do everything in my power to help her grow and become the sweet little girl I know she will be.

We still have the other appointment scheduled on Oct. 5th with Dr. Blumenschein, so hopefully that will give us another opinion to somewhat make a decision on what to do. I also have called Dr. Nash to make an appointment to discuss the other things it could be and how to go about testing for them. The date is not set for that one yet.

***EDIT*** I have received a call from Dr. Nash (after her office hours and for 30 minutes, might I add) since I wrote this. We have a blood test scheduled for Friday the 17th. She says she doesn't want to test for cystic fibrosis until after we get the blood test done. We don't want to put Lilly in any pain, so we are just going to do a heal prick test for now. She still feels it is the heart that is causing the problem, but is definitely willing to look at other options. She wants to get in touch with Dr. Hess and discuss some other ideas so we can all be on the same page. She also is interested in what Dr. Blumenschein has to say. We all agree that if surgery is what is best, Lilly will have it, but also don't want to rush into it if it's not needed quite yet. I want to take this time to give some MAJOR kudos to Dr. Nash...she is amazing!! If any of you are looking for a pediatrician, I HIGHLY recommend her. She never makes me feel rushed and always answers every one of my questions until I completely understand every aspect of it. She is wonderful! Ok, I'm done. : )

We need your prayers for knowledge to come into our Drs minds and for them to just kind of say...huh, I know what's wrong...it's this. We can diagnosis it, treat it, and get on with the unknown. I think that not knowing is the absolute hardest part. We have no control over any of it, and it's eating away at us. Please, please just say some prayers for our family to have some peace and healing of Lilly.

Waiting to go back to our room...