Tuesday, August 3, 2010


Tomorrow is the day.

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


As the overwhelming joys of the news that we are not looking at an immediately lethal diagnosis have begun to settle, we have begun looking at all that we need to prepare for.

We have begun learning a whole new set of circumstances and challenges.

There is a lot to learn.

I try not to dwell on all that we *may* face, as the unknowns of that are daunting in and of themselves.

But I have to be honest, it is overwhelming to be trying to take this all in. To look at the likelihood of certain scenarios. To think of being able to give this little boy all that he needs. To know that this is a condition rare enough that even a number of drs we may meet may not be familiar with it and it's implications. To be spending every spare minute I have digging for information and research and possibilities....

It is very humbling to be in a position where I just flat out know I won't be able to do it all. That I will need to rely on others for help. That I will need to rely on my Heavenly Father for strength simply to make it through some days. To set aside what I thought all of my plans for the immediate future were....

It is amazing that though the days just fly by, some of them seem to last an eternity as the enormity of all if this closes in on some moments. To be honest, it's scary.

There is so much continually stirring in my mind, it makes me grateful that thus far I have escaped the pregnancy insomnia that usually hits me during these last months. At least I can sleep and just not think about it for a little while. And when sleep comes I hope for the dreams of my little boy's face...where I seem him so vividly, as I hold him safely in my arms....

Reaching Out

Sometimes the ability to connect online just amazes me.

I finally felt like I really had a good grasp on the whole hydrocephalus thing. Found some good research info, hospitals that post their research articles online (which is more rare than I thought, except for the numerous sites that charge a ridiculous fee to access their medical journal info), as well as some online communities for those with children who have hydro. Heck, I'd even watched a VP shunt surgery online.

Enter new diagnosis. 7 syllables, 17 letters, an endless spectrum of maybes and wait and see.

Enter an entirely new and vast world of information to digest. And significantly fewer resources. From the stats that I've found, babies with HPE happen at a rate of roughly 1 in 100,000 live births. Approximately 3% of babies with HPE live to a full term birth, the rest either being miscarried, or passing away sometime in the second half of pregnancy.

Hey-at least we've beat those odds.

The catch is that HPE is rare enough, and apparently misdiagnosed as well, making the stats on it kind of confusing. There is no world wide comprehensive database to make the stats accurate. I read one report this week that gave an average survival of 6 months. That evening I was contacted by someone who has a 22yr old with HPE. 22!! Since then there have been others....a 5yr old, 8yr old, 9yr old, 14yr old......goodness....who knows what to expect.....

This sweet woman has directed me to a chat group for HPE, contact information for a research group, as well as contact information for a support group. The number of people out there who are familiar with HPE and are living with children with HPE may be small, but they are out there, and I have been blessed to have been contacted by a handful already. It is such a blessing to get an email from a stranger saying "I've been there, we've put together some information that will hopefully help you and your drs". From someone else who directed me to the opportunity to have our MRIs reviewed by radiologists with a Brain Research Center who have a lot of experience with HPE, who can evaluate our scans, and then give us some possible ideas of what to expect based on the development of others with similar scans.

Today I am feeling very grateful for this little group of parents from around the world that have come together to support each other through this journey. Though I wouldn't necessarily have ever chosen this path, I am glad that there are others who have walked and are walking it and that they are very welcoming and willing to guide and share and sympathize.

It is very overwhelming right now to be learning about an entirely new condition, and the added possibility of further complications from missing brain structures. There is so much to learn, so many specialists we'll need, and an infinite number of unknowns.

And yet somehow- despite my insane amount of fear and self doubt- the fact that I have my best friend by my side, a group of strangers willing to reach out, an amazing support network of friends and family, and the opportunity to drop to my knees to beg the heavens for strength, faith and courage, makes it all ok for right now.

Add to that one little baby boy in my belly with the hiccups, and this morning I can breathe a sigh of relief.

And just try to take it one day at a time.

33 weeks

I think it's about time for a full run down....

Weeks: 33
Weight gain: 20lbs from official pre-pregnancy weight, 26 from first appointment weigh-in (TP measurement is 9 1/2 squares around)
Maternity clothes: Pants, pretty much every day now. Still a two pair of shorts and one of jeans that I can wear, but they are getting very close to crying for help. Shirts, not so much, save a couple of my favorites. I kind of live in fitted tees-and even the maternity "fitted" tees fit like tents. Also, I put on one of the maternity shirts I don't mind so much and it was short. What the heck? How is that maternity shirt shorter than my regular polo shirts? I don't understand.
Sleep: Like a rock
Best moment this week: Oh so many....obviously the "your baby will live" news tops everything! But I do have to say that getting in a run that felt good was a big deal, and having a friend bring a baby gift to me was exciting like it's never been before.
Symptoms: Not too bad...occasional heartburn/reflux, frequent bathroom stops and looking like I swallowed a watermelon....you know, standard fare. Nausea has returned more frequently than I'd like, which is annoying, but hey, what do you do? Braxton Hicks contractions are fairly constant, dozens a day on a standard day. It cracks me up when the first time moms worry about "more than 4 an hour" and call their dr if they get 5 in an hour and a half.....at this point it's more of a situation for me where unless the baby feels like it's falling out or my water breaks, or contractions don't go away within a few hours, meh, no biggie!
Movement: Slowing down-not as much full rolling going on, but thankfully he is still moving frequently enough and strongly enough that there is no cause for concern.
Belly Button: My poor belly button. I can see it through most of my clothes this time. I guess it deserves props for holding out until the end of my 6th pregnancy! Just hoping that things don't stretch so far that the hernia will actually need repair one day.
Attitude: Grateful, Thrilled, Overwhelmed, and occasionally unpredictably irritable. Darn hormones.
Food Cravings: Nothing in particular, except Freshcetta pizza and Kalua pork. (but thankfully those cravings aren't constant-just two things that sound good no matter the time of day)
Food Aversions: My standard pregnancy aversion-red meat. Also, despite my serious love of a big leafy green salad, the spinach, lettuce and chard that is so ready to be pulled from the garden just sounds disgusting. Dang it.
Gender: It still cracks me up that at every single ultrasound we have they check to verify that it's a boy. It was pretty obvious at 15 weeks. And 18 and 19 and every ultrasound since then.....I'm pretty sure that's not going to change....
Labor Signs: Getting more frequent contractions and some days a lot of pressure. Dilation and effacing have started, which is actually good since an induction is nearly a guarantee at this point. Anything my body does to get things started and make that process easier is good.
What I miss: Running for longer than a mile and a half without a walk break. And my favorite jeans.
What I am looking forward to: Finally holding this sweet little boy in my arms! Seeing his face and his little hands and feet.
Weekly Wisdom:"Every hour of every day is a perfect miracle" -Walt Whitman
Milestones: In our last ultrasound we saw Sam sucking and practicing breathing, which is a huge deal with his diagnosis. We hope this means that his lungs will be ready to work on their own when he arrives, and that he will be able to eat without a feeding tube. Every day is one day closer to full term.....August is only 3 1/2 weeks away.....

MRI Results-FINALLY! Looking to the future....

Two weeks is a long time to wait for such pertinent information.
Let's hope and pray that I am learning some patience through all of this. I think I'm getting there.

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!!

Also, I got to see my adorable little baby's chubby face today. As soon as I get it online I will share it. The boy has got some cheeks! And the same nose as a couple of his siblings too.....

Thursday, July 1, 2010

Time to face whatever it is

There is irony in having my pre-appointment routine include making sure I'm wearing waterproof mascara and have kleenex in my purse.

This morning I feel like I've been on trial for the past 3 months. Some days the case has been argued in my favor, some days against.

The jury has been deliberating for two weeks now.

In roughly three hours I should know the verdict.

I am terrified.

In my heart I feel like the news won't be good.
Whether I am just trying to brace myself for the worst or whether that is an indication of the news we will receive today, I don't know.

I have rarely begged the heavens for strength the way I have this morning.

32 weeks

Another big milestone-thank goodness! With chances improving for our little guy's outlook on a daily basis (and every day further in the belly meaning a little less time in NICU), things are looking good! I feel like I'm growing by the day now.

Anxious for my appointment this week, glad my husband will be there with me.