Monday, May 26, 2008

I had a regular OB checkup last Friday, the 23rd. It was good to ask to the doctor some more questions, especially about the kidneys. He said he wasn't all that worried about the kidneys b/c he sees kidney abnormalities often. He said he was just glad that he has two kidneys. He also said that if the kidneys weren't functioning that my amniotic fluid would be low and that I have plenty of fluid. So that put our minds at ease a little more. I asked if they had come across any syndromes, etc. that match up the three abnormalities that are in our baby. He said that it was strange b/c there isn't anything that goes with his issues, so that is a good sign so far. We'll probably end up scheduling a c-section a week or week and a half before my due date which means we'll have another baby in 51/2-6 weeks, which is crazy!!! We greatly appreciate your prayers for us and the baby. They are being answered as we feel God's peace. My next ultrasound will be in 3 weeks. We'll post a few pics soon.

Friday, May 16, 2008

Since our appointment on Wednesday, I’ve been talking with some moms on a hydrocephalus web forum. One mom said her baby also had very little brain tissue but now his brain is expanding and he’s doing really well. Another lady said her son also had “enlarged” kidneys and that it is pretty common and about 90% of the cases are fine once they are born. So those things were very encouraging and gave us a lot more hope than Dr. Doom! Also, the neurosurgeon said that from the way that the ventricles were enlarged it could be due to a really common cause of hydro which is more environmental than genetic. So we are praying that his case isn’t part of some syndrome or something and praying that his kidney issue will resolve. It has definitely been a roller coaster especially when they find one more thing wrong each time. At this point we can basically just trust God to keep this baby safe and wait and try not to think about worst case scenarios. Thanks for being there for us through all of this and your prayers are greatly appreciated! By the way, I’m due July 16th and we’ll probably try to have him as close to the due date as possible as long as he’s doing ok so that he’ll weigh more and everything will be more mature which will hopefully help him recover faster.

Background 2: Roller coaster…

On Wednesday, it was back to Dayton for another round of appts. The first stop was at Miami Valley for another ultrasound, and the second was at Dayton Children’s Hospital for our first meeting with the pediatric neurosurgeon.

We had a different ultrasound technician and perinatologist this time. The perinatologist (aka, Dr. Doom) gave a pretty bleak prognosis. Not only is the fluid level very high, but now the kidneys are measuring bigger than normal. This combination of severe hydrocephalus, club feet, and now enlarged kidney’s, led that Dr. to describe the situation as “disturbing,” and he thinks it may all point to a syndrome. (Although the amniocentesis and Microarray tests ruled out any chromosomal syndrome, there is still the possibility of a genetic syndrome.) He said if our baby survives at all, it doesn’t appear he would be able have much of a mental capacity. ….Hearing all of this left us confused and a bit numb, but we were late for the next appt. so off we went.

Next stop - Dayton Children’s Hospital…. Our hope level was bottoming out when we got to our appt. with the neurosurgeon. However, he offered encouragement. Dr. Kleiner explained his experience with treating hydrocephalus and what he’s witnessed in brains like that of our baby. Once a shunt is implanted and the fluid begins to drain, the fetal brain has an amazing capacity to “reconstitute” itself or begin growing and expanding. The baby’s development would be slower than that of the avg. kid, but there is still much hope to be had.

So where does that leave us?? How can two Dr’s looking at the same picture see something so different? …Driving home, we came to the realization that only God truly knows what our outcome will be. The Dr.’s each have wisdom and experience behind their opinions, but our true hope does not rest in their hands. It can only be placed in a God who we believe to be Author and Perfecter of life. As cliché and as crutch-like as it may sound, His plan is perfect and He’s faithful.
Please pray with us that we would be prepared for whatever may lie ahead.

Background 1...

Here's an email we sent out after the first big Dr's visit (4/1)... It's a bit lengthy, but it provides some background.

(For anyone who may not know, we had an ultrasound a week and a half ago and found out we’re having a boy, but the doctor was concerned that there was too much spinal fluid on the brain so he sent us to a perinatologist to have another, more in depth ultrasound done. )

Well, we had our doctor’s appt. today in Dayton, so we thought we’d give everyone an update on what’s going on with Zicklet #2. The spinal fluid in the ventricles was still pretty high and indicates hydrocephaly (fluid on the brain). The most likely cause of hydrocephaly is that the aqueduct that lets the fluid through is very narrow or blocked. Although we don’t know the cause for sure, the most common way of treating the problem is by putting a shunt in the brain once the baby is born which will continually drain the excess fluid off of the brain to another part of the body where it can be reabsorbed. The doctor said that the prognosis is still good and that the fetal brain is very resilient. Of course there is a wide range of outcomes and brain damage is still a concern. Right now the baby’s head is normal size and will hopefully stay that way. If the fluid and pressure increase, it could potentially cause the head size to expand. So far the doctors say it appears not to be a syndrome or chromosomal disorder, which is a good thing. We haven’t gotten the genetic test results from the amniocentesis which will be a better indicator if there is a chromosomal problem. They also found on this ultrasound that the baby has club feet (which means they are kind of curved or turned inward). This could be related or unrelated to the hydrocephalus. The doctor said it is pretty easily remedied with casting and/or surgery within the first year.

So I guess the next thing is to talk with my OB and make a plan. We’re just waiting to for the amnio results and will meet with a genetic counselor and also will need to meet with a pediatric neurosurgeon. They’ll probably do periodic ultrasounds to monitor the fluid levels.

This has all been a lot for us to take in us over the last couple of weeks, and it has been tough. There have been waves of sadness and anxiousness, but overall, we can honestly say that we have trust in God and his purposes in all of this. We’re so grateful to have Him and a close circle of friends and family who have already provided us with support and encouragement. There’s a long road ahead, and we’d greatly appreciate your prayers (that we would be able to take this one day at a time/minimal or no brain damage/discernment in upcoming decisions/wisdom of the doctors/stuff like that).

Thanks for taking the time to read all of this.
-Scott & Kira