pics

I had to put the bibs on him even though they are way too big still. Nothing new to report, still trying to wean meds and get better for heart surgery. Probably will be the status quo for a while.

Update on Michael

First I finally finished some of his bibs. Here are the pics. I will get some with him wearing them. I got feeling better and finally went up to see him, but we forgot the camera : ( We will get some cute pics soon.

Medical update. Wow a lot has happened in the last few weeks. Here is the shortened version. We got the pulmonary hypertension specialist to look at the heart cath results. He says the interpretation of the numbers is not as bad as what the other cardiologists said. (They weren't taking certain factors into consideration.)
So the new plan is: Michael is off of the flolan. He was on a lot of medications to help support his blood pressure while he was on it and that wasn't good for his kidneys. They are weaning the medications he was on to support his blood pressure. They are also waiting for his kidney functions to get better. (Medications are damaging to the kidneys, so it's just a matter of time before they function better, hopefully.) Then they will take him to the OR to close the hole in his heart.

Hope that all made sense. He is so adorable! I wish I had brought my camera today. His hair keeps growing. We gave him a bath and put it in a faux hawk again and man is that spike getting high.

Thanks to everyone for their continued support and prayers.

Crappiest days of my life!!

I have been sick. I started spiking low grade fevers on sunday. I don't care so much that I don't feel well, but I haven't been able to see my Michael. It is the most frustrating thing. I know the best thing for him is for me not to visit, but I miss him terribly. Hopefully I can kick this soon so I can go see him! Just had to vent a little bit.

Still the cutest!

Here's a big update for everyone who wants to read.

Our son has pulmonary hypertension. This was found out when he went to the cath lab. The pressures in the blood vessels around his lungs is too high. Meaning that the vessels are too constricted. The right side of the heart that pumps to the lungs is not meant to pump against high pressures. This is causing a lot of his problems. He has a lot going on right now that are all interacting with each other.

We are starting a medication called flolan. This will go into one of his many iv sites. The idea is that we can get his blood vessels to dilate. We hope this will give him an opportunity to make new blood vessels and the one's he already has bigger.

There is no guarantee at this point. It depends on how he reacts to the medication. He will be on the medication for at LEAST a few months. Then he will still need another open heart surgery to correct his VSD.

We will be in the ICU at primary's for this entire time. Please continue to pray for our little guy.

Cute halloween pics

I know the hoodie is way to big. I promise it's a 1-3 months though...

He is very swollen right now. The doctor's think it's from the hole he still has in his heart. We are going to the cardiac cath lab again.... He might need another open heart surgery but we won't know till after the cath lab.

He's still our little man with personality. We couldn't love anything more than we love him. We will keep everyone posted.

On another note for all my co-workers who have been worried. I finally got my c-section stitched closed. For those who aren't knowing what I'm talking about my incision opened up and had fluid collections. We were packing it and doing dressing changes twice a day for many weeks. It's stitched up now and is doing good.

Keep our little man in your prayers.