Friday, July 23, 2010

Nearing the finish line-the latest on baby Sam

Only one more scheduled round of appointments left in this pregnancy.
Wow, the end is near!
Too near some days.

The most recent lineup included a very long and very thorough conference with a couple of members of the Neonatology team where we will deliver.

It was also very sobering.

Let's break it down, shall we?

Holoprosencephaly (HPE) is a fairly rare condition. Rare enough that they are still trying to build a database of diagnoses from which to base research and studies on. They are still trying to build a basic of what genes may cause this to occur. To the point that we've been offered genetic testing (Aaron, myself and baby) free of charge so that they can add it to the research that is ongoing in hopes to nail down the possible places in the genes that the mutation that causes this thing occur. A great number of doctors have not even heard this name, let alone dealt with patients who have it.
To compound things, with the spectrum of HPE, there are different levels of how much brains are affected; at one end you have some people with HPE who lead a relatively functional life and are making it into their 20's (and likely beyond), and on the other end, you have those who do not survive birth, or if they do survive birth, make it only a very short time afterward.

Sam's odds? About a 60% chance of surviving the first month of life.

At least it's better than a 50/50 shot, right?

The statistics on it all are almost unbelievable when you take into account the full spectrum of HPE cases.

HPE occurs about 1 in 20,000 out of every live birth.

Only 1 in 200 babies with HPE make it through full-term pregnancy alive.

Roughly 2% of those survive through birth.

Less than 1% of those that survive come out without health complications, which will allow them to live during their hospital stay.

Total odds? roughly a 1 in 20,000,000 chance.

Talk about having the odds stacked against you.

The good news for Sam and for us is that he does not have the most severe form of HPE, which ups his chances. He's already beat the odds that weighed heavily against him surviving this long. The frustrating thing is that the type of HPE he does (most likely) have, semi-lobar (alobar being the most severe, lobar being less severe), has such a broad spectrum of outcomes, that there is no way to predict just how bad he will be until he is here. And even then it will take time to see how things go. Some babies with semi-lobar HPE end up with problems as severe as one would expect with alobar. Some fare much better, with fewer complications and less severe problems.

And while he does have additional challenges other than just the HPE (hydrocephalus, ACC, absent septum pellucidum), that will be the source of additional hurdles for him, he has-at this point-been spared other problems with major organs; his heart and lungs seem to be whole and strong, and other vital pieces of his brain appear perfect. We also found out that his optic nerves seem to look good from the MRI that we had a few weeks ago, so hopefully that will prove true upon his arrival and future scans. Frequently with the absence of the septum pellucidum, there is severe damage to the functionality of the optic nerves, and often results in serious vision problems-if there is vision at all. And that is just one of the repercussions of that little piece of the brain I'd never heard of until a few weeks ago....the host of problems that occur with the endocrine system, and their multitude of effects, is overwhelming.

Even after pouring over literally hundreds of pages of information over the past weeks, and really feeling like I had an idea of the laundry list of hurdles that we may most likely face, nothing prepares you to have to sit face to face with the drs that will be working with your baby as you go over what to expect in a mere matter of days as your baby leaves the world inside you where he has been safely tucked away for the past nine months.
It is frightening to hear that along with the Neonatology team, your path will very soon cross with neurology, endocrinology, pulmonology, cardiology, opthomology, occupational therapists, speech language pathologists, along with a handful of others. That there are a host of problems that will be carefully watched for. That they hope that your baby will not need a ventilator, but that it is very much a possibility. That you will deliver in a room specifically designed with a pass through window to the most critical area of the NICU, and that the odds are you will not get to hold him, or really even see him, unless by some miracle he happens to cry on his own at birth-which they do not expect. To talk of feeding tubes and surgeries. To have to discuss the very real likelihood that should he need a vent, he may not be able to be weaned off it and that we need to give serious though to the point at which we would either decide to do a tracheotomy, or stop forcing his little body to fight with machines for life....

It is frightening to sit face to face with those drs who may in the very near future be helping you make life or death decisions for your child.

It's a lot to digest.

There have been a lot of moments in the past few months that have seemed to last an eternity. The minutes between 9 and 10 am last Thursday may just rank at the top.
And it was nothing short of heartbreaking to watch my husband sitting next to me as he absorbed it all too. It sucks to watch the person you love most in the world struggle. It hurts even more to know just how much he must be aching inside, as I feel that same ache eating away at my own heart. I honesty cannot imagine walking through a single step of any of this without him by my side.

It was difficult to walk through the NICU, especially because with the amount of time our Neonatology meeting took, we had to bump the tour to the end of my other appointments which meant that Aaron had to be back at work and wasn't with me. While I was grateful at how cozy the NICU felt-it didn't feel like a big sterile OR like the one other I've been in-it was so hard to walk through there knowing that my baby would be the one in that empty spot very soon.
Though I do have to say it was heartwarming to see all those perfectly beautiful little babies in there....such strong little souls....


On a slightly lighter note, things are rolling right along on all other fronts.
Me? Same old, same old. Mentally and emotionally I may be a complete basketcase, but physically things are going so well it's almost comical. Everything checks out well, my labs still all come back fine. I could not have asked for a less complicated pregnancy as far as my own health is concerned. And it still cracks me up that every week the midwife comments on how tan my belly is! Getting more frequent contractions (waking up with them every morning at 4, which is getting old), but at least they are doing something even if it's not much. Enough progress internally that an induction should roll along fairly smoothly.

Speaking of induction, the date has been set for August 4th.
God bless our Perinatologist who understood as she told us we were booked for a delivery on August 5th and we pleaded for ANY other date that week since the 5th is our Anniversary. She laughed and fixed things. Thank goodness! Not that this will make our anniversary any more eventful this year-in a good way anyway (who wouldn't want to spend their anniversary in a hospital wondering if their child will survive?), but hey, at least Sam will have his own day.

So there you have it.
One more official check in with everyone next week-the last week in July-to make sure everything is still good to go. Assuming he stays in there that long. And with my history we have no reason to believe that he won't.

Then the real adventure begins.


Tiffany said...

I have been thinking about you guys so much lately. My heart aches for you and all of the unknowns but also leaps that baby Sam has already beaten so many odds. I hope you can feel the love we all have for you and your family in the next little while!

Laura said...

Catey, you are amazing....I think of you guys often and continue to pray that things still go your way. I am sure your neighborhood is helpign you but know that we are here if you need anything...I can watch the kids or whatever. Ben was in the NICU for just one week it was so hard...and I knew he was going to be ok....I can't imagine what you are going through and I am glad you have such a great eternal perspective. Know you are in our thoughts and prayers.....Laura

Rheanna said...

It's got to be hard to share all of this information with everyone. You are such a wonderful and amazing woman! Thank you for your example! Sometimes I can't believe that the end of this pregnancy is already here. Know that we love you and are matter what! We're praying for you all!

Kelsey said...

We are praying our hearts out for you and Sammy! Can't wait to meet the strong little guy.

~LL~ said...

Wow..... you shoulder so much and do it so gracefully. I continue to pray for you and Aaron, Baby Sammy and your doctors. I am glad you are documenting all that you are. No matter the outcome, you are an inspiration to so many.

Just remember, NO MATTER WHAT, God wants this baby in this world, in this way, at this time. We may never (on this earth) know the reason, but ultimately God is in control and will see you through. Remember, in our weakness, HE is strong. He is the author of life.... no matter how long the earthly life may last.

much love,

~LL~ said...

Thank you, Kelsey....

Heather said...

I was wondering how things were going with you and your family. Thanks for all the updates! You're a great writer and tell us your heart. Thank you. You're in our prayers!

Heather said...

PS - I don't know where you plan to deliver, but if it's near my house, you're welcome to bring anyone here to crash, or for me to tend. We have an extra bedroom plus a couple of air mattresses.