This week has been up and down, which isn't unusual I suppose.
Monday started with a call from my doctor, giving me two pieces of information. First, the address at which I can send a complaint about the clinic we were referred to. Second, she notified me that Lemoore's hospital, should we decide to deliver there, will only provide "comfort care;" if we'd like more aggressive care, we should deliver at Fresno Community Regional Hospital in Fresno. Lemoore will not provide an IV, intubation, oxygen and no surgeries. Comfort care consists of delivery (nice), wrapping the baby, and spending time with him. Fresno would provide intubation (so the baby can eat), an IV (to replace lost fluids), oxygen (to breathe), surgery options (like putting the intestines where they should be), and resuscitation. We would be referred to another perinatologist, but not the one we saw previously, which is good. So basically, I felt like we have to choose between a good, supportive system at Lemoore, and more options for our baby in Fresno. It all comes down to the question "how aggressive do we want to be" with our baby.
So that was all a lot to take in. And not a decision I'd want to make for Slider much less our baby. Dr. Shipper made an appointment for me to speak to a pediatrician at Lemoore so that I could learn more about what Lemoore can provide. (This is why I love my doctor.) The pediatric doctor gave me a call within 3 hours to schedule a meeting.
On Wednesday we had our regularly schedule OB appointment. We were able to have some more questions answered and hear the heart beat.
Thursday, I met with Dr. McVey in Pediatrics. Katie came with me since Dave was flying. It was good to have her there because she's actually had children, with some minor complications, so she new some better questions to ask.
That was a hard discussion. It just sucks. Basically, if we don't do the surgery on the external-intestine, it will kill him eventually. But, since we know he has heart issues, and will likely have lung issues, do you put someone that unstable in surgery? Also, after surgery, he wouldn't get to come home with us after the surgery. He'd have to be tube fed for about 2-3 weeks and stay in the hospital. And that's assuming he'd make it through surgery. It's hardest because we don't know what his lung condition will be until he's born, and we don't know the exact heart complications he has. And then there's a chance he wouldn't be eligible for the intestine surgery to begin with if some hole isn't big enough. Some of this we'll be able to know more about via further ultra-sounds. But it doesn't help our situation much. We still have to decide. If we do surgery we will be being very aggressive; surgery means iv, intubation, the works.
So yeah. Rough week. I felt a little bit better when I realized that people have made this decision before. If someone is in a car accident and is brain-dead or vegetative, some one's family has to decide what to do. Hopefully there is a living will that can offer some guidance. Well, we don't have a living will, but have to make the same decision: how long is too long; how much is too much; IS there too much?
So this is lame. :( But we try to stay positive, "always look on the bright side of life" and keep chugging along.
This weekend we had Katie and Tom over for dinner on Friday night, and participated in Relay for Life Saturday. We spent a few afternoon hours on a track walking around the track. We saw a youth Mariachi band, and a K-9 demonstration. Then we went back to the track at 2am to walk for an hour. Dave was a little less than pleasant about getting up at 130am, but we went out anyway and had a good time. We've been thinking of boy names, but haven't come up with anything yet. We had a girl's name all picked out. Maybe next time. ;)