Tuesday, August 3, 2010
Tomorrow
I have struggled to post here for quite some time, all of the things I want to say seem to personal to share. I've found the need to process them internally as opposed to writing them which is my usual method of sorting through my thoughts.
I've been asked so often over the past couple of months "how are you holding up?" Well, depends on the day.
I was asked today by a dear friend "are you ready for this?"
What could I even say?
Part of me wanted to break down and tell her that I'm terrified. I'm not ready. I'm not ready to let him out because I know he is safe inside me. I'm not ready to face what might come tomorrow, to turn this page to find out what the next chapter of our journey holds. I don't want to let him go and I'm afraid that I will have to.
Part of me is strong and wanted to tell her-and remind myself-that I will be fine no matter what happens. That I would be lying if I said I wasn't scared, but that I know things will workout as they need to and I will be up to the task of whatever I might be asked to do, whether that be caring for a child with extreme needs or having to let go.
I told her that I was as ready as I'll ever be, which I suppose is the truth.
Early tomorrow morning I will walk into the hospital, to a delivery room with a pass through window to the NICU with every possible life saving measure ready for our little baby. I cling to the hope that he will cry when he is born and that I will be able to hold him before they pass him through. I try to ignore the fear that he won't.
I am grateful for the reassuring calm that with Aaron by my side we will take this one day, one hour, one minute at a time and keep moving forward.
Tuesday, July 6, 2010
Overwhelmed
Reaching Out
33 weeks
MRI Results-FINALLY! Looking to the future....
We finally have some answers. Not all of them, as some will be years down the road, but some of them.
One of them being that we can talk of “years down the road”.
After two very long weeks of waiting, we finally had a chance to discuss the MRI results today.
First, the good news.
Sam’s diagnosis is not lethal!
We get to plan on having a baby that will live!
I think I shed more tears out of relief over that information than over anything else this morning.
There is no evidence of bleeding in his brain, or any other events that may have caused further damage than what he is already dealing with. This is also good!
Now, the nitty gritty details.
Samuel does have a form of holoprosencephaly (HPE). Thankfully he sits on the mild-moderate side of the spectrum of an HPE diagnosis. There are a few different degrees of HPE; ranging from lethal to there are problems, but we don’t know how severe they will be. Sam sits down on the problems end of things. When a brain forms in the very early weeks of pregnancy, it divides into the two hemispheres with a dividing line in the middle. Sam’s division does not span the length of the brain the way it should, so there is indeed merging between the lobes of his brain. We know that he will have mental and physical delays, but as has been the case through this entire process, we don’t know how severe they will be, we just have to wait and see.
The ventricles in his brain-which is what we have been watching closely with the hydrocephalus-have merged. This is not a good thing, they are supposed to stay separate. We do not know what effect this will have on his brain and his development. The one piece of good news in this factor is that since they have blown into each other, the pressure against his brain is not as severe. There was more pressure on his brain tissue as each of the vents was expanding on a continual basis. The last time we were able to get good measurements on his vents one was measuring roughly 30mm and the other about 20mm. They appear to be the equivalent of roughly 20mm each at this point, so obviously the amount of room they are taking up (if they were still separate) is less than a month ago when they were each expanding at their own rate. Hopefully with less of that continual compression he was getting, there may end up to be a little less damage to the capabilities of that brain tissue.
Sam also has what is called Agenesis of the Corpus Callosum. This essentially means that the fibers that span from the right to the left side of the brain so that the hemispheres can communicate are not there. In and of itself, this is interestingly not necessarily a huge deal. There are actually adults that function normally and find out for whatever reason (typically an accident or injury that requires a head scan) that they have ACC, but have functioned normally through their lives. So alone it’s not necessarily a big deal. Obviously this is not the single diagnosis here, but part of a number of things, so again we wait to see how this plays into everything.
He is also missing a part of his brain called the cavum septum pellucidum. This can bring with it a number of problems as well.
So while we are looking at some likely significant mental and physical challenges for our little guy over the coming years, we can say years!! The perinatologist went so far as to say “maybe 20-30 years?” when Aaron asked what she meant by years (if she meant 3 or 4yrs or 10yrs). The sense of relief is tremendous!
Today we focus not on the dozens of specialists we will need in the near future, or the challenges that this child and our family may face, but the fact that we can plan for our baby to arrive and spend some time-hopefully a fair amount of time-with our family.
The other good news from today is that Sam’s head has just barely increased in size (both BPD and Circumference) over the past two weeks. Dr B is optimistic about delivery still, especially if his head doesn’t have a big jump soon. There is still the chance that there could be a big jump in head size, in which case if we see that at the next appointment in 2 weeks we will start steroids for baby’s lungs and plan the delivery within a week or two of that point (putting me at 35 or 36 weeks). Otherwise, we might just make it to August after all!!
Thursday, July 1, 2010
Time to face whatever it is
32 weeks
Saturday, June 26, 2010
Some Days
Friday, June 25, 2010
Still waiting.......
Numbers
Run, Run as fast as you can-31 weeks
Appointment Update, full growth scan and the MRI
Tuesday, June 15, 2010
Tuesday, June 8, 2010
Pillsbury Dough Boy
Reasoning in the pregnant brain
Icing on the cake-one more week! 29 weeks....
Thursday, June 3, 2010
This week's appointment-head growth ultrasound
Tuesday, June 1, 2010
28 weeks
Sunday, May 23, 2010
The point at which my butt expands rapidly
One day I'll get control of these emotions again
Living on a yo-yo sucks
Pregnant woman running the sequel: Awkward and slow
Tuesday, May 18, 2010
26 weeks
Saturday, May 15, 2010
Run Like a Mother
The Saturday 10K-A Victory Lap
Answered Prayers, Miracles, and a STELLAR appointment
She completely addressed every fear and question and concern we've had come up in the past month. She was just so darn wonderful!
Sam is doing remarkably well. Though he's not doing any "better", or even staying stagnant as far as ventricle size, the increase over the past three weeks has been about as minimal as we could hope for. Last appt his vents were measuring 19.7 and 22.3mm, this time they were 22.3 and 22.7 (?I think?), so really not a huge change! His head was measuring 3wks ahead last time, and is consistent at about 3wks ahead this time (just a couple of days past 3wks ahead). Everything else measures almost perfectly to the day to where it should be. His heart still looks amazing-there is no reason to be doing echos or consulting with a cardiologist, which is something we were told we needed last time. His hr is strong at 149, still active and growing just as he should be which is SUCH a relief! As I have found other hydrocephalus moms online and looked at the measurements of their babies in utero, it seems that a lot of the big jumps in vent/head size occur at about this time. One little boy who measured almost exactly as Sam has at our past few appointments had a jump in head size from 3wks ahead to 12wks ahead at this point in his development. I was terrified that we were going to see that today-and SO grateful that we didn't! All things considered, our little guy is thriving in there-beating back so much of what we were told in the beginning of all of this.
We will be transferring my care, up to the U which is adjacent to the Children's Hospital that serves many of the Intermountain states. That way we will be within steps of surgery if we happen to need it asap after delivery. The U hospital and the children's hospital are connected, so it's just down the hallway. Even if I end up with a section (hopefully not-this dr was VERY encouraging about planning a vaginal delivery still!!), I will be able to just get right to baby and not be stuck at a hospital elsewhere recovering myself. Unfortunately the Dr we saw today does not primarily practice at the U, but does have privileges there and does service weeks there every so often, so she does have two partners she works with that are primarily based at the U. She was so positive about them both, and is setting up an appointment for us to meet with one of them in the next week or two. From what she said this other Dr seems to have very similar ideas towards practice as she does, and they both believe that setting up a plan of care to move forward with at this point in the game will be beneficial for us and for all those involved in my care and Sam's. She also mentioned that this dr is a crazy marathoner, so she'll for sure understand the fact that I'm still trying to keep running.
We'll soon be meeting the perinatologist who will be assuming our care-we will just be transferring everything from the midwife to eliminate all the extra appointments. The MRI will be scheduled within the next month, as well as a consult with neonatologists and peds neurosurgeons so that after we have the MRI results we can start establishing a care plan for Sam once he gets here too. The MRI is a fairly vital step in letting us know what is really going on in his head-in the mounds of research I've done in the past month (I feel like I'm working for a degree in hydrocephalus at this point!), I found that in 40-50% of cases like ours where the hydrocephalus appears to be isolated, the MRI will reveal other issues that weren't detectable through ultrasound. We are anxiously looking ahead to see what more information we can find on Sam's condition, and are so grateful for the amazing advances in technology that will allow us to do so.
It is so nice to feel like we are finally moving forward, and with plans to prepare for a baby-not a funeral! Though it will still be a wait and see thing, and as far as any of us know, it's possible that his vent and head size could increase exponentially tomorrow and totally blow the prognosis we are looking at as of today's u/s. It will still be touch and go in the newborn period, especially if he decides to come earlier than term, so the possibility of the worst case of losing our little boy is still very real. But today I feel like I am walking on air-this is the best news we have had in the past 7 weeks! So for now we're basking in the glow of today's great news and moving forward with unbelievably grateful, and hopeful hearts.
Tuesday, May 11, 2010
Sam's first official race
He was coming along for the run anyway, but hey, the kid believes in a good cause (this was for donations to marathon for the cure) so we made it official.