Sunday, April 25, 2010

This week

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. ;)

Monday, April 19, 2010

the Weekend

Dave and I had a nice uneventful weekend together. On Friday night, we drove up to Fresno to celebrate the birthday of one of Dave's fellow-JO's (Junior Officer). There were about 10 of us, Laura and I being the token wives. We ate at Ruth Chris' Steak House.... I've not been a fan of red meat or chicken since getting pregnant, so I had the vegetable options, with a crab-cake starter. In case you've never been there or heard of it, this restaurant basically sells only steaks, with seafood options to satisfy the wives, or girlfriends that will inevitably get taken there. It's also very expensive: $10 beers, $18 appetizers, $42 steaks. Ouch. The cheapest thing we ordered was the $9 creme brule. Oh well. We don't spend that much regularly, and it was a special occasion. After dinner we went out to a bar, and were home by 1am.

On Saturday, we hung out. Didn't do much. Slept in, for one. We had dinner at a friend's house; they'd gotten up at 6am to start brisket, and again, not being a fan of meat currently, it was good, Dave really enjoyed it.

Sunday was church, where we (I) had a minor melt down. We spent the afternoon in Fresno, attending Triple-A baseball game of the Grizzlies, the field-team of the San Fran Giants. The Grizzles won 7-6, through some anxious innings.

We got a call on Sunday evening from the genetic counselor from Clinic Horrid. The Amnio results confirm that our baby has Trisomy 18. As odd as it sounds, Dave and I were relieved. We've prepared ourselves for Trisomy18, and if it had been something else, like something hereditary, we would have been broken all over again. No word on the gender yet. I've got a doctor's appointment on Wednesday morning, and hopefully the amnio results will have gotten to her by then so she can tell us more information.

On a happy note, I saw a video of one of my sorority sisters being proposed to. So sweet. Made me cry tears of joy.

Wednesday, April 14, 2010

"There is no foot too small that it cannot leave an imprint on this world."

Tuesday, April 13, 2010

Prayer Works

For anyone who is a skeptic, prayers work.

Dave's mom had been in town since Wednesday of last week, and we just dropped her off at the airport. It was a blessing to have her here with us as we've been working through everything. We were relieved as much as she was to realize that we have a support group here larger than we thought. Our church has been so helpful and supportive. Today we were able to meet with a doctor for the first time and have a good discussion and have questions answered. Our doctor gave us a standing invitation to be her walk-in appointment at any time, and even offered to deliver if and when the time comes. She was sympathetic, compassionate, astute, and informative; she was everything we didn't receive when we were told about our baby's condition. She's willing to see me twice a month as I progress to check the baby's heartbeat. And in another answer to prayers, she told us that last week, their office received word of another clinic that can provide the same services, but hopefully with a better bedside manner. She's helping us work out how to file a formal complaint about the doctor we were referred to.

So, to review. Prayers answered this week:
1. Dave and I are still strong and maintaining a positive outlook.
2. We've found we have a stronger support system here than we thought through friends and church.
3. We've found a doctor who is on our side, is willing to work with us and support us and our decision not to terminate our pregnancy.
4. There is another clinic available for Lemoore to refer patients too so hopefully no one else will be treated the same way we were.

Thursday, April 8, 2010

Dear friends,

I'm sorry to relay this news to you via email, but it's just too hard for me any other way right now.

About two weeks ago we did a screening test for development abnormalities for our baby. One of the results came back abnormal for the AFP test. With a 25% false-positive rate, and Dave and I being young and healthy, we were pretty sure it was nothing, maybe that the baby was older than the doctors had thought.

On Monday we had an appointment with a Fetal Maternal Medicine Specialist to do an ultrasound and received the worst news any expectant parent can receive: our baby has Trisomy 18. Her brain is filed with water, her heart is enlarged and has several problems, her arm bones are wrong, and her intestines and liver are on the outside. 

Trisomy 18 is a genetic non-hereditary disorder. It happens at conception and is random. Every pregnancy has a .075% chance of having it happen. The 18chromosome didn't split correctly and as a result, our baby has three parts of 18 instead of two. This has caused her to develop abnormally in almost every aspect.

There is an 80-90% chance that she will not make it to her birthday; if she does, there is a 10% chance she would survive; if she does survive, because of the complications she has, almost no chance that we would take her home. 

For us, terminating the pregnancy is not an option. I could carry to full term, or miscarry at any time. 

Dave and I are not ok. We canceled our trip to Germany, Dave's mom is coming today, and we are trying to work through what we need to be doing.  We are meeting with the pastor of our church this week, and planning to meet with a doctor to discuss out ultrasound results and more of what we can expect. 

What we really need right now is love, supportive words, and tons and tons of prayers. The most difficult part of our situation is that the hard part hasn't come yet. Please pray for the strength of our baby, and for strength for Dave and I as we work through this time. 


Tuesday, April 6, 2010