Wednesday News

First of all, I want to thank you all so very much for praying for our family. Please please please continue to do so. We probably need that now more than ever. I am too drained to try and type it all out, so I am copying and pasting an email David wrote and sent to his family in response to his sister Mary questioning about our appts this week. I think he covered just about everything.

I'm sure you are all wondering the same thing Mary is so I figured I would just write this to all of you at the same time. I really didn't feel like talking on the phone yesterday after the entire day of meetings with doctor's so I'm sorry I left you all hanging.

I would say that our last two days have been good and bad all at the same time. The doctors and staff at Texas Childrens are great. Everyone was very knowledgeable and very nice. They spent a lot of time with us going through what we can expect from the surgeries and the next 10-20 yrs of Brooklyn's life. That was probably the good part. They confirmed that the opening in her back starts at L4. The spina bifida clinic lead doctor said that the L4 location is pretty good from the standpoint that anything higher on the spine than that she would not have much confidence that she would be able to walk ever. So she said with it starting at L4 there is a pretty decent chance that Brooklyn may be able to walk eventually with braces. Unfortunately it was a lot of talk about the same things we already know, which is that we won't really know much until she gets here and goes through the surgeries. They will close up her back in the first 2 days after birth, and then watch her for about a week to 10 days to decide if she will need a shunt or not. They said 90-95% of the kids do need a shunt. The MRI and ultrasound showed that her bladder was very full and one of her kidneys is bloated which means she is likely not able to pee right now. They think she will need to cath pretty soon after birth and she will likely have to continue that for the rest of her life to ensure that she doesn't mess up her kidneys.

The MRI also showed several new things that weren't too encouraging. The doctors have told us not to worry about it right now because a fetal MRI is not the most reliable thing since it is a picture through Jodi, through the uterus/amniotic fluid (I can't spell ???, get over it), and into the baby. That said, it is hard to see the things we saw in the report and not worry about it. There is a portion of her brain that controls visual processing and various other things that seems to not be developing correctly. This damage could result in blindness, retardation, stunted growth, etc etc. A bunch of crap I don't really want to think about. Brooklyn also shows to have an ovarian cyst that is about 2 inches in diameter.

All of that said, the neurosurgeon said that the brain formation is pretty inconclusive. He said that they have had kids whose brains looked perfectly normal, but didn't function properly, and kids whose brains looked really wrong but functioned just fine. So he did his best to tell us to not worry too much about it and they would do tests when she is born. They will be able to do a better MRI on Brooklyn when she is born to assess these things better than they can in a fetal MRI.

Our next doctor's apt is Nov 6th with Jodi's doctor. I assume we will talk all of these things with him then, and set a date for the c section.

So status of Brooklyn is still quite questionable.
Status of David and Jodi is decidedly discouraged, frustrated, sad, and angry. I'm not looking for anyone to talk us out of these feelings or tell us it is ok to feel this way. I am just letting you know where we are at.

We'll keep you posted as we learn more.

So, there it is. I'll admit, he and I both are really struggling right now. We have prayed and prayed for months now about our daughter and her physical issues, and we went in on Wed only to find out that our worst case scenario is actually way worse than they originally thought. That blow is really hard to take, and we are just trying to figure out ways to take it. So... I hope it is ok that I ask this... please, if you would like to leave us a comment, just tell us you are praying for us. Nothing more. There is no need to say anything, really, in one of these situations where no one knows what to say, and all our hearts really need to hear is that we have prayers going up for us at a time when we personally don't really know what to pray or really feel like praying. We're confident that God is all over this thing, and that is what is getting us through. Thank you for everything.

Much love~ D, J, R, & B