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.

Saturday, June 26, 2010

Some Days

I feel like I have this need to prepare for all side of all possibilities. Unfortunately that has meant looking into things like newborn hospice and funerals and other heartwrenching things that one never wants to think about when thinking of their soon to be born baby. Do I need to be preparing with a crib or a casket? Should I buy little diapers or will they just be a reminder on the top shelf of the closet that the baby who should be wearing them isn't here? Some days I process it all logically, some days it's all emotional. Every day it's daunting.

But honestly, with all the doom and gloom that we have encountered from some drs, we know it's a possibility, and hopefully at least looking into these things ahead of time will help if we are faced with some of those things.
While we are optimistic right now, and so is our main dr, we still can't know.

One of the message boards I read is for women who have carried a pregnancy to term despite a poor or fatal diagnosis for their baby. That lucky group of women who have had their drs offer them a termination. Heck of a club to belong to. It's very hard to read some days, very encouraging on other days. And honestly, I find it oddly comforting to read through the experiences of these women as they deal with the end of pregnancy, giving birth to their child, and dealing with the weeks and months following. It's nice to know that there are others who sit in the middle of the unknown. It is nice to know that there are some who have babies that prove the drs wrong- the miracle babies. It is also nice to know that a whole range of emotions is normal through this whole process.
I haven't ever posted there because I am hopeful that I won't need to be on a "grief and loss" board. That things will be fine, that my baby will live for a long time. I don't want to be the one reminding them that they didn't get to be one of the lucky one's whose baby lived despite what drs told them. So I lurk, and glean, and hope for a miracle.

Today I linked from this board to someone's blog. She lost her baby 6 months ago to Trisomy 18. I can't number the blogs I have read over the past 13 weeks detailing experiences of those who have had babies with hydrocephalus, those with a host of other issues in addition to hydro, some who continually prove drs wrong, some who struggle through life on a daily basis. And blogs of those who have other fatal or poor prognosis given for their baby. Those who have been through the stress and strife of wondering if their child will be ok, only to have to let go of their baby and send them back home entirely too soon.

I don't know if I thought it would get easier to read through others' experiences. It doesn't. Each time I read through the emotions from these mothers who are going through their own grief, it brings me to tears. Today I sat and cried as I read through this woman's recent experience, of her conversations with her 4yr old daughter about the child their family just lost.
Sometimes I feel far removed from it, the way I did when I read of someone who knew their child would die within hours of birth two years ago when I was pregnant with a perfectly healthy child.
I remember wondering at that time if I would be up to a task so great as to carrying a pregnancy knowing I would have to let go. If I would be strong enough to be willing to walk in that woman's shoes.

I still wonder.

I wonder if I am up to the task before me. I wonder if that task for me is having the strength to let go, or the strength to carry on. I wonder how much time we will have with our son; if it will be minutes, days, or years. I wonder how it will affect our other children. I wonder which drs he will prove wrong....will it be the drs who presented the worst case scenarios in the beginning, or those who have been more hopeful and encouraging.

So many questions....today I long for answers.

Some day they will come.

Friday, June 25, 2010

Still waiting.......

It's almost 4:30 on a Friday afternoon. I'm thinking that the odds are very much on the side of not hearing back from Perinatology today about the MRI results.

Another long weekend of waiting. Hopefully Monday will bring some news.

I keep thinking of when my Peri said (last Thursday), "I'm leading committee tomorrow with Perinatology, Neonatology and Radiology, so if things are pretty clear cut and easy to see and we have a chance to go over it, I may be able to call you tomorrow afternoon." That "tomorrow afternoon" was a week ago.

I'm trying to convince myself that they are just very busy (which I KNOW they are), they are dealing with some very rare cases (which I also know they are, especially since I've connected online with a woman whose baby is one of those cases), and that just because I haven't heard anything yet doesn't necessarily mean things are that much worse than we've seen previously and not "clear cut and easy to see". *sigh*
A couple of the days this week I've been fairly convincing. A few others, not so much.

So now we wait.
And pray for patience.
And hope for a phone call on Monday.


My husband has had a couple of days off work this week. It's been wonderful.

One of the best things is actually hanging out in bed for a bit in the morning. Usually he's gone by 5:30 every morning, and let's be honest, that's not exactly a lounging around in bed hanging out talking kind of hour. Especially if one of you isn't much of a morning person.

So this morning as we were just laying there talking about nothing, we decided to do some math.
As of today I have been pregnant for 2121 days. 303 weeks.

That's kind of a long time.

(I did realize later that this doesn't include the weeks from the pregnancy that I miscarried. But since very few people knew about that anyway, that's ok!)

I'm a numbers geek.

I notice weird things; like the fact that my almost 2yr old stepped on the scale this morning and weighed in at a whopping 23lbs.
And when I saw the 23 I realized that today she is 23 months old. 23lbs at 23months.
Would have been even cooler if today were the 23rd, but that's ok.

Anyway, I like numbers. Not that I've really been able to pick my kids bdays-even the ones with which I was induced since the dr's schedule kind of dictated that more than my preference. If so my 3rd child would have been born on 11/1/01 instead of 10/30/01. But the whole 10/01 thing was ok.

Yes I know, I have problems.

Back to the point-
Since all those 7s and 3s and 21s line up today (2121 days, divided by 7 = 303 weeks), and we are aiming for a vaginal delivery to avoid a section-which the dr has mentioned is perfectly feasible around 35-36wks if head size is still within possible range, I'm thinking that 7/21 would be a great birthday. That puts me right in between 35 and 36, and gives me a few weeks left in pregnancy to feel like I'm ready for this whole process to begin.

I don't think I'll really be ready for this whole thing no matter when it happens, but hey, we can pretend.

Run, Run as fast as you can-31 weeks

Still running. And it still feels good.

This morning I had the rare treat of running with my Love. With my husband off work for a couple of days, I dragged him out with me. We kind of ran together a few times last year when we were gearing up for triathlons, but since we run at a different pace, and I started pushing my distance when he was keeping his lower, it didn't work very many times.

He hasn't run for months and is just breaking back into things again, so I figured this would be a perfect time to run together.

And it was!

It was so much fun to get out with him! He helped me keep a nice and even pace and I think I helped him push his distance just a bit further before he needed to stop to walk. Awwww, what a great team we make!

On the way back home after our turnaround (conveniently located at the playing fields with outhouses so I could make my now customary mid-run bathroom break), we hit a point where he was ready to walk. And since I was past my 2mile mark, my body had finally woken up. I desperately wanted to run. Not just keep on "running" at the pace we were holding, but actually run. He told me to go ahead.

(Not that I need my husband's permission to do something, but considering how well he knows me and the fact that I like to push things just a little too far, one of his jobs during the end of my pregnancies is to keep me in check so I don't injure myself, or cause problems for baby.)

I was a little nervous at first-I didn't want to set myself up for a letdown. I started out at our same pace as he slowed to a walk, realized I felt good, and kicked it up a notch. Then another. And another.

I have no idea how fast I went, I left the Garmin home again so I wasn't focused on the numbers and was paying attention to how I felt.

But wow, it felt like I was flying.

I haven't felt like I could really kick it up and RUN for months. It was so liberating!

And then I had the added convenience of him there to take my weekly belly picture for me so that I didn't have to drag out the tripod and use the timer. Yes!

31 weeks (and one day), fresh off a run:
It is good to feel good!

Appointment Update, full growth scan and the MRI

Another big round of appointments today.

I think I may be becoming somewhat of a morning person. Having to leave by 630 to get to my appointments has reminded me of how much I love Summer mornings. It reminds me of the early morning runs I took nearly every day last year. And of camping as a kid.
Good times.

But it only applies in the Summer. I'm still holding on to my "not a morning person" status for the dark and cold months.

Things began bright and early at 8am for a full growth ultrasound. I was flying solo today as Hubby had some meetings at work he needed to be in. I was ok, but I know he felt awful that he wasn't there. It was a little weird since he's been at every appointment for all the extra things going on this pregnancy. I did feel bad that he was missing the ultrasound.

Jo-the lovely sonographer we saw when we first transferred to this facility-was the lucky gal who got to peek into my belly today. I was glad it was her-she's a gem! She is so very good at going over every single little detail with me, generous with pictures, and takes her time to make sure we get to see everything.
This morning we got to see all sorts of fun things; We saw forehead movements, an eye open and close, and we saw his little mouth sucking away. Not sure what he was sucking at, but just to see that his body is able to do that brought a huge rush of relief to me. The unknowns of how much his brain has been affected by the pressure from the hydrocephalus are scary, so seeing him do something like making a sucking motion is such a treat! Jo also got a shot from an angle that was kind of a view of his shoulder and the back/side of his head. She stopped at that point and said "look! Do you see that fuzzy line along here? He has hair!"
It was beautiful!

We've never had late pregnancy ultrasounds with any of our other children and I am constantly amazed at just how much can be made out in a plain old 2D ultrasound.

His BPD is measuring just over 8cms, which is average for a baby at about 31wks, so just a few days ahead! His head circumference has increased at a greater level than in the past, which is a little scary, but still within an ok range. HC was measuring about 31cms, which is average for a 34wk fetus, so nearly 4 weeks ahead. He has been staying within a 2-3wks ahead range for the past 12 weeks, so seeing that range increase is a bit worrisome to me, especially when we are SO close to being able to deliver.
Our Perinatologist was absolutely thrilled with his measurements though; she is more concerned about the BPD number than the actual head circumference number, so since his BPD is in a great range, she is still very encouraging about delivery. She keeps mentioning if we get to 35-36wks we can do steroids for his lungs and go ahead and induce, so if his head stays in an ok range for just a little over one more month, we should be ok!

As far as I'm concerned, I'm still as boring as one could hope. In fact as the midwife (that I see each visit for standard pregnancy stuff before I see the Peri) was trying to get all of my information into their new computer system, she had a hard time even finding a label for me. Most high risk pregnancies are high risk because of issues with the mother, not the baby. It was kind of nice to watch her scrolling through a list of hundreds of issues and know that none of them apply to me. I ended up being flagged as "Unspecified Pregnancy Complication", with clarification of baby having hydrocephalus added in the extra fields. Nice.
I am measuring right on, which is wonderful because to be honest, I think I would be beyond uncomfortable if I was still hanging out at 6wks ahead. oy! I only gained one more pound over the past two weeks (I swear their scale must be broken), putting me up a total of 18lbs from my official pre-pregnancy weight, and 24lbs from my first pre-pregnancy weigh in. That works!!
My blood pressure was a whopping 96/58. Go me!

AFter the midwife came the Perinatologist, for a run down of Sam's scan and some info on the MRI. Everything looks fabulous with him. Still the issue of not being able to get a good vent measurement because of his position, but I will take him sitting head down over a clear cut measurement anyday!! We were able to measure one side, which came up at 18mm, but really can't tell how very accurate that is. Dr B was hopeful that we could know on the MRI soon, she mentioned that she is leading committee with Radiology, Neonatology and Perinatology tomorrow morning, so she was hoping to get a chance to go over the scans with them then and get the to Neurology as well and call us by that afternoon. Otherwise we are looking at likely about a week until we hear anything. Ok. I'll plan for the week and hope we hear by then.

At least I've learned to overestimate what I'm told by medical personel, and be pleasantly surprised if I hear back before my estimates.

After that I finally headed down to MRI.
Fun times for a slightly claustrophobic girl with an expanded girth.
And really, could those tubes be any smaller? I really don't think I'm that big of a person-maybe I'm just in denial. I get that my waist has increased what, probably 10 inches at this point?, but still, not that huge. With the brace thing they put over me to help facilitate the scan, I was scraping along the edge of the tube. Yes my hips have spread and I was kind of laying on my side, but still-ack!!
I aimed for keeping my eyes closed and hoped that the music I picked would help me not think about the fact that I was stuck in the middle of a long thin tube.
I could almost hear the music.
So I just kept my eyes closed and willed Sam to hold still so they could get all the pictures they needed from all the right angles and not take too long about it.
I survived.

And now we wait again.
Next appointment is in two more weeks, a big fat "yippee!" that I haven't had to bump to weekly monitoring yet. Especially with the nearly hour and a half drive.
Back at 32 weeks and 2 days. July 1st. Crossing that calendar line into July will be a huge relief. June is just too early to have to deliver, but July seems ok.

Holding out for 32 weeks.
Loving the squirmy little boy inside my belly.

Tuesday, June 15, 2010


30 weeks.

So very, VERY nice to see a 3 in front there! Hang in there baby!

Tuesday, June 8, 2010

Pillsbury Dough Boy

Charlotte's new favorite game. She'll do it anytime, but absolutely will not let the belly be when I'm outside working on the tan.
At least she is doing the giggling.

Reasoning in the pregnant brain

I had a movie pop up on Netflix today. One of those "Since you liked ___ and ____, we recommend this!" The movie? The Spirit of the Marathon.

Sounds good to me!

I had some busy work to do and was looking for a movie to have on in the background.

My line of thinking?
I love running. If I weren't pregnant I would be signed up for a couple of marathons for this season. Since I can't run every day at this point, and am really missing long runs and actually working towards an event, I would love to watch this documentary as it follows others doing the things I can't right now. Some inspiration would be great! Yes! Perfect movie to watch!

And then I cried through half of it.

Don't get me wrong, I would not trade pregnancy for anything in the world. And if being pregnant meant that I would never run again for the rest of my life, it's a trade I would be willing to make.
But there are days that I do miss that little part of the "normal" me.

I'm not sure why I thought that watching other people train, prepare for and run the marathon would help me feel better about not running right now myself. It didn't. It made me miss it. Even more.

But also made me darn sure that barring any serious complications that render me unable to do so, there will be marathons on the calendar for next year.

Never trust the logic of a hormonal emotional pregnant woman.

Icing on the cake-one more week! 29 weeks....

28 was a huge milestone. When this whole thing started at 18wks and change, I prayed for that milestone. 28 weeks is such a big deal; survival rates increase so much for babies at that point. I just needed to get to 28 weeks.

Anything beyond that would simply be a treat.

And it certainly is a treat!

Thursday, June 3, 2010

This week's appointment-head growth ultrasound

28wks and 2 days, next round of appointments.

This week it was only a head growth scan to check Samuel's BPD (bi-parietal diameter) and HC (head circumference).
And of course the standard pregnancy check up with the whole weight, blood pressure, "how are you feeling", etc, etc.

Good news #1: Samuel is still head down. A lot of hydro babies sit in a breech position because of increased head size. Feet in my ribs is a VERY good thing. I adore those little feet dancing along the top of my belly.

Good news #2: BPD is looking good, and HC is staying along the growth curve at about the same rate as previous. BPD is 7.7cms. It must be below 10cms or the possibility of a vaginal delivery is pretty much zero. 7.7 is good. HC is between 28-29cms depending on the angle, which puts it on par with the average size for a 31wk 5 day fetus. That's about 3wks ahead, which is pretty much how far ahead he has been measuring. That's still just fine.
We are so very grateful that there haven't been any huge jumps in his head size. It is such a relief!

Good news #3: I am as boring as boring can be. Weight: good. Blood pressure: good. Fundal height: now dead on! Midwife's suggestion: "just stay boring please!"

Due to Sam's head down position and the ossification of skull bones that jumps into high gear at this point in pregnancy, we were not able to get a good view-or measurement-of his ventricles. This worries me a little, as the focus has been on those vent measurements for this whole process. It's a little unnerving to walk out of appointments and NOT know how things have changed inside his head. This is where we count solely on hope and faith and prayer. And trust that things will work out just the way they need to. And rely on the beautiful amount of movement that our little guy gives us every day as an indicator that he's ok in there.

Back in 2 weeks for a full growth scan, check up with the midwife, and the Perinatologist, and the long-awaited MRI.

Tuesday, June 1, 2010

28 weeks

28 weeks.

Do you have any idea how much the chances of survival of a preemie go up at 28 weeks? They are fabulous.

This is one of the milestones that I feared I would not hit. 10 weeks ago I prayed, I begged the heavens that I could be pregnant for this long. That I would make it long enough to really look and feel pregnant.

And here I am. It is a blissful feeling.

Samuel is active as can be, it is such a treat to feel him being so active every day. One of my favorite things every morning and night is to lay in bed and watch him jumping around. It is priceless.

I am so grateful to have made it this far. That our little baby is alive and doing quite well-all things considered. I am grateful to be healthy and that my body is holding up so well. Though this pregnancy has definitely been a challenge in a lot of new ways, it could very easily be so much more difficult. I feel beyond blessed.

I neglected to share the big old belly last week as I hit that 27 weeks, officially in the third trimester milestone. I'm adding it, because to me there appears to be a big change from last week to this week.
And this week, the grand and glorious 28 weeks:

Grow baby grow!
(I swear that shirt is a coral/peachy color and not the hunter orange that it appears. Yoga is great in the morning to help perk oneself up. Neon color is not.)

Sunday, May 23, 2010

The point at which my butt expands rapidly

In addition to my lovely emotional outburst yesterday, I had another "burst".

Involving my backside.
And hips and thighs.

in a big way.

Two weeks ago I wore a cute little black and white skirt. I finally took the time to make myself a black wrap shirt this week, and was thinking how cute it'd look with said black and white skirt.

So as I got dressed for church on Sunday morning I anxiously plucked the skirt out of my closet, thankful that I still had a little time left in it before it had to be tucked away.

Or so I thought.

This skirt was a splurge at White House Black Market a couple of years ago. I was thrilled with the number on the tag, and even more at the fact that it was a little lose when I bought it. It is a happy piece of clothing.
So the fact that I could still wear it at 6 months pregnant was just uber thrilling! Hear my heart pitter patter.

I pulled it up.
I noticed it was getting a little snug around the back, but not too bad.
I zipped it up.

Er, make that, I tried to zip it up.

Halfway exactly.

And that's all she wrote.

Yes, the beloved skirt that zipped all the way up just two short weeks ago would now not even zip beyond halfway.
Clinging to some last shred of hope I thought that maybe I could still pull it off since the shirt I made literally wraps around me a handful of times, and would easily covered the unzipped portion at the top of the skirt.

So I looked in the mirror.
And turned around.

All I could think was Steel Magnolias.
"Looks like two pigs fightin' under a blanket."

WAY too accurate.

And so, it is with heavy heart, that my cute little black and white skirt has been shelved.
And I realized that the jeans I just washed don't exactly fit.
And neither does that pair of capris.

Wow. I am thinking maybe instead of measuring my belly every week that I should be measuring my butt every week.
I inarguably carry most of my pregnancy weight there each and every time. It's just the way things go for me. But never have I remembered such an unbelievably rapid growth in my lower half/back side.

"So hips/butt/thighs-what do you want to do tonight?"
"Try to take over the world!!"

Off to a good start.

One day I'll get control of these emotions again

Anyone who has been pregnant or spent more than 30 seconds around a pregnant woman knows that pregnant emotions are unpredictable. And unfortunately sometimes uncontrolable. Just when you think you're fine, the water works start again.

A pregnant woman can go from laughing to crying in roughly 1.36 seconds.
And vice versa.

Sometimes without provocation.

It's interesting.

I was talking with a friend of mine on Sunday in between church meetings. His wife is due just two weeks after me. They are expecting twins. Back in the beginning of our pregnancies we joked about who would go first, since the average pregnancy with twins tends to be about 36 weeks and most of my babies have come around 38 weeks. We wondered who would "win" and give birth first.
I told her I was happy to let her have that one.

And so it was that I was discussing with this friend my pregnancy and his wife's pregnancy as we sat in the foyer at church. He mentioned that their dr keeps talking about delivery around 35-36 weeks.
I tried to keep things light and mentioned that I hoped she was pregnant long enough to avoid having babies in the NICU, and how much I'd love for her to "win" that whole 'who delivers first' thing that we'd talked about. Especially if she makes it to 36 weeks.
He asked why?
I told him because if she made it to 36 weeks and I was still pregnant, that would mean I had made it to 38 weeks still pregnant.
He asked if that wasn't happening now. Hadn't things looked good at our last ultrasound?

Well, the last one he heard about yeah.
Not our last one.

And then I lost it.
I felt so stupid sitting there totally unable to control the water works. Trying to gain my composure enough to explain that at our last appointment we had begun laying preliminary plans for delivery. We had theorized on when that might have to happen. And how much it sucked to even be having to think about that at 26 weeks.
I was able to choke out "we had to start talking delivery plans. Our next few appointments will be to help establish a growth curve of his head size and whether or not we need to get him out sooner rather than later." Followed up with "It's just so early to have to think about that...."

Great. Bonus points to the preggo emotional chick for not only being awkward, but making said friend feel super awkward. Along with the other friend who happened to be standing there for this conversation. Good going.

As I apologized profusely for my lack of emotional control and sucked it up enough to explain the latest, I felt so awful. Awful for making him feel bad, awful for not having better control, awful for having to say it out loud again, making it all the more real.

As I was explaining everything going on to someone else a couple of weeks ago she asked "So, have you just explained it so many times now that it's easy to say? It doesn't make you emotional anymore?" Well, at that point, pretty much. I'd get teary occasionally depending on who I was talking to and how I was doing that day, but usually I was fine.
I am such a control freak that I dislike that this latest development has thrown me for a loop and altered my ability to do that still.

So if you happen to be talking to me and I just randomly lose it, go ahead and chalk it up to the pregnancy. Or lack of M&Ms consumed within 24 hours. They help with emotional stability. Did you know that? Not with the thigh spread, but hey, you can't win them all. And yes, I gladly take donations.

Living on a yo-yo sucks

So the official transfer has begun.

A new hospital, and new perinatologist. Just one specifically even though there is a full team of them there. It will be nice to be have just one specialist taking over my care. Almost like a normal pregnancy. Except for that one specialist is also assisted by an MA and Midwife that I will also see at each appointment for the routine stuff while the peri worries about the big stuff and the technical stuff. It will be nice to have one specific specialist following my care though. Though all the perinatologists we've met over the past....what's it been? only 8-9 weeks? seems like an eternity...have been wonderful, it will be nice to have a constant.

Our new peri really is great, thank goodness. She had some big shoes to fill after everything Dr H (who was the wonderful peri we saw last week) spoke so highly of her. She is very personable, seems very knowledgeable, and the others we saw before her on Thursday morning spoke very highly of her as well. As a bonus, she was a happy person (ever notice how a relatively high number of drs are just very serious? Not willing to be jovial? bugs me). She also happens to be a native Texan and didn't skip a beat when Aaron (half)jokingly asked, "So, Texas huh? What do you carry?" The woman rattled off a preference without skipping a beat! ha! She also didn't look at him weirdly for asking. Bonus points.


Last Thursday as we did the full care transfer and started getting acquainted with the staff the will now be over our care, and the hospital we will now be delivering at (hospital #4 since this pregnancy began, just in case you were curious), we saw a sonographer (with 20+yrs experience), a Dr of Radiology (who teaches specialties internationally), the MA, the Midwife, the Perinatologist, and a member of the Neonatology team. Needless to say it was a long appointment.

We started with the sonographer who was wonderful. I hear all these stories from people about how their ultrasound was bitter sweet because the person running the machine was awful. I'm so glad I haven't run into that. And I hope we end up with Jo doing more of our ultrasound work in the coming weeks (hopefully months). She was a gem! At one point as we were looking over everything she asked "Have you chosen a name?" I replied, "Yep, his name is Samuel." She paused for a moment and said "Sandal?" I corrected her and pronounced more clearly "Sam-u-el". She started laughing so hard she had to stop the scan! It was great. :) She turned and said, "Now you have to admit that I handled that well! I didn't even flinch or balk. And some of the names I hear....Wow." This then led to a slew of bad jokes about what our other kids names are, and that if we could have one more shot at things we could have twins named Flip and Flop. She was a riot.

But of course we all had to snap back to reality, and as she was concerned about some of the shots she couldn't get, she pulled Dr W (the radiologist) in with us to see what she could find.

Unfortunately things weren't quite so light hearted after that.

We were so very very thrilled last week when after three weeks Sam's ventricles were mostly stable and had only grown a slight bit. After just a six day time span from that last ultrasound until this one, we expected to see roughly the same. But as a reminder that this is truly a day by day, week by week process, We didn't see what we hoped. We were thrilled when his smaller vent measured just under 21mm (less than last time!), our hearts sank when we saw that his other vent was measuring just over 30mm. That is nearly a 50% increase over a period of a week for that side. Obviously that's not great news.
It also appears as though there is some fusing going on between his frontal lobes. I think I have mentioned in the past that we couldn't see the midline division between the two hemispheres of his brain at certain levels. We assumed it was because of the fluid concentration since we could see it both below and above where the fluid was the greatest. We couldn't find it this time.
This then led to a discussion (again) of the amnio results, and reemphasis that they did indeed come back clean, with no indication of a trisomy or major genetic disorder. This seemed to be a bit concerning, and it seems as though there is a bit of wonder as to why we may be seeing this. Typically when brain fusion is present it is indicative of something called Holoprosencephaly (HPE). The good news is that this has been ruled out with the clean amnio. Also this usually comes with some very obvious facial deformities, and we have seen over and over our little boy's sweet perfect face; his eyes, nose and lips are all perfectly formed and we have seen them with great clarity. So what it is that may be causing this? We have no idea at this point. Nice huh?
The only way to really get a better look at this is through MRI where each layer of brain tissue can be looked at in depth. We have chosen to stick with the original timing that was discussed for the MRI ( about 30wks), so we will be doing that in 3 or 4 weeks. Until then the only things we can really watch will be the growth of his head circumference and ventricles. After the MRI we will start the consults with Pediatric neurosurgery-assuming that we are in a situation where it will be a feasible and worthwhile option after we have some more information on what's going on inside his head.

It was really kind of hard to start talking about delivery plans and timing and just what all may be coming up in the next few weeks. Obviously we hope for a couple of months, but we will have more frequent ultrasounds now to see if we can get a good idea of the growth curve that his head is following so that we can accurately plan for a reasonable delivery time. We are still hoping to be able to avoid a surgical delivery, but of course there are a number of factors playing into that as we go over things each week.

It just seems too soon to be having to start planning for all of this.

It's difficult to go from such a high to yet another low. It's like living on a yo-yo. We're down, we're back up, we're back down again, and up. Then it comes time for the down again, so hopefully our appointment in a week and a half will be not another down, but another up. Or at least keep us spinning on the same level without another drop.

We're certainly learning to practice some patience as we go one or two weeks at a time waiting for the next dose of information. Someone asked this weekend "So do you feel like it just keeps knocking you down, or are you sitting at a point where you can say 'ok, bring it on!' as you go to each appointment?" While I'd love to say I was confident and strong enough that I feel like I can handle whatever it is that's heading our way.....I'm just not there most days. There are days when I feel like I'm handling things well, but others-like last Thursday-where I just beg the heavens for the strength to be able to make it through each piece of this puzzle that comes our way. It's hard to feel so optimistic about things to then be left wondering again.
And then we're exactly where we were when this entire things started. Placing our faith and trust in the only option that will carry us through, hoping for the best, but trusting that "the best" might not necessarily be what we have in mind, and praying that we will still be willing-and able-to accept that.

Pregnant woman running the sequel: Awkward and slow

I am still fighting to run.

Yesterday, I didn't exactly conquer.

I had signed up for another virtual race. A 10K this time.

After last week's stellar 10K, I was really looking forward to this!

And then yesterday morning dawned.
Well, it kind of dawned. The sun didn't exactly show up because it was horribly cloudy. And rainy. Pouring. And cold. COLD! There was snow on the hills just a couple of miles from our house. Yep, end of May and snow. Nice.

I decided to roll over and get a little more sleep.
Thankfully the rain also decided to take a break and was gone when I got up an hour later.

But it was still cold.
Like layers and gloves to run cold.

But enough about the weather.

There comes a point in pregnancy where you wake up one morning and everything just feels different. It's like everything has shifted. You have to hoist yourself up out of bed and you wonder who swapped your body out for this one you woke up in and why they would do such a thing. It takes a minute for your legs to adjust, you waddle/hobble to the bathroom because you are sure you will explode if you don't make it there in record time, and as you hurry yourself in there to avoid a puddle your legs laugh at you because some nasty nerve has decided that they shouldn't work as normal either.

It's fun.

But this weekend the mental beat the physical, so out the door I went.

I've been getting some leg pain, especially in my shins during my runs for the past few weeks, so I finally sucked it up and got some new running shoes. Granted I was a few hundred miles over due anyway and should probably be nicer to my feet and legs under normal circumstances. My pregnant legs were begging me for a little help, so I finally obliged.

And since I'm a cheapo, I was not about to let the new investment in footwear take a backseat on the first Saturday in my possession because of low temps and pregnancy aches. These shoes will be used to full capacity darn it!

I hit my normal 2 mile wall, but today, I just couldn't push past it. It didn't help that my ipod died just past mile 2. Great.
Now my only accompaniment was my plodding steps, my popping hip, and gasping breaths.
Not exactly the same motivation as a good beat and distracting lyrics.
I ended up taking a couple of walk breaks on the way to the turn around.
I just couldn't find my groove.

But I still faked a smile for a finish pic.

And Sam likes the ride so he was smiling too.

(You'll just have to take my word for it)
And the new lovely ritual of rest, hydrate, rest, eat something NOW while hydrating and resting. You know, just to make sure everything is ok in there. And wait for Sam's victory dance to make sure he's still happy in there.

My husband had to head out to a study group before I got home and he passed me as I was on my run back in.
After he returned from his studying we had the following conversation:
"So....how was your run today?"
"It sucked rocks."
"Really? I'm sorry. Why's that?"
"My ipod died. My legs hurt. My hips felt off. My bladder hated me, even with two bathroom stops. And it was cold. And I couldn't run the whole thing. I had to take a walk break. A WALK break!!!"
"But I made it the full 6 and change miles. Even if I was exponentially slower than I wanted. I just felt awkward running today."

He then chuckled a little. Of course I asked for elaboration.

He was then kind enough to give me a demonstration of what I looked like as he passed me when I was running home. I was about 4-5miles in to my "run" when he passed me.
His demo was hilarious. And sad. And from what I felt like when I was running, frighteningly accurate as to what I'm guessing I looked like.

Awkward and slow.
But still plodding along. I may have to have him come out and tape me on one of these runs so that I can have some comic relief when I need it.

And the stubborn in me will keep on keepin' on until I'm down to the weird pregnant waddle/hobble/fast walk. At which point it will probably even more amusing to watch.

Tuesday, May 18, 2010

26 weeks

I am so glad to be pregnant for one more week.

I feel like I am starting to press my luck here. I have made it to the end of my second trimester. About to embark on the third. I have a belly that grows by the day, filled with a beautifully active and strong little boy.

It is still so hard some days to think that there is something wrong in there. By all accounts other than the technological peeks inside me, things are picture perfect.

Ok, well, truthfully in a "perfect" world I wouldn't still be randomly fighting morning sickness, and my veins wouldn't be quite so prominent (nor would my thighs and butt), but considering the many other things found in the grab bag of pregnancy, I'll gladly take my lot.

28 weeks has been a magic number for me since this all started being a "how long will this last" kind of situation. And now it's only two weeks away. That both terrifies me and thrills me. So glad to have made it this far, continually praying that I-no, that WE will make it further than any of us ever thought.

And somehow I neglected to take a picture this week. No giant ballooning growth though, so just look at last week, and next week, and conjure up something in between!

Saturday, May 15, 2010

Run Like a Mother

Obviously running is a release for me. A physical, mental and emotional way to just let it all go so I can keep on going. Some days I'm fine without it, some days lately skipping a run is a welcome break. But some days I feel like I'm going to just burst at the seams if I don't get out.

There's a book that caught my attention that was released recently. It's called Run Like a Mother. Though the title makes me giggle, it was the idea behind the book that really struck me. Two women-moms-put together their thoughts on running, their experiences, their ups their downs.....and then added to it the input of dozens of other running moms. Genius.

I am blessed to have a couple of runner mom friends who understand the addiction. They understand my drive to (try to) keep running for now, and the withdrawal on the days when it just doesn't work.

This book was like a long conversation with them.

It is amazing motivation, and great comfort on those days when I just didn't get out, or I did get out but really wondered why I even bothered as I hobbled home after a pitiful few miles.

Within the first two pages of this book I was hooked. And within the first two pages, they hit the nail right on the head; "It's the truth: For an overstressed, overtired, overextended mother, there are few other sensations that rival a delicious run. Once the sweat starts running down my temples, I daydream, analyze, smile, wonder, channel something cosmic. I feel alive and, perhaps most importantly, like myself again."

And so the fight of mental and emotional continues against the physical.

Some days I feel like I'm running away. Some days it seems like if I can just run a little faster and a little further, I can leave all of my fear and stress and reality behind.

And yet on some days it feels like when I run it will all be ok. My mind clears, my heart finds peace. Instead of running away from things, it feels like I'm running to the clarity that I seek.
My body does exactly what it was made to do, which gives me hope that as the coming weeks pass it will be willing to do the same in regards to this pregnancy.

The Saturday 10K-A Victory Lap

I'm calling it last week's victory lap.

Because it was a week of victories.

*We all survived. Trust me, some weeks that is a victory.
*One week closer to summer vacation. Hallelujah. Can't come fast enough!
*One week closer to Aaron finishing this quarter of his schooling. The last week of June will be heaven. (he gets a week of before the next quarter starts)
*I am still pregnant. (woo-hoo!)
*The house was clean. At one point. For a little while. I promise.
*It was sunny and warm! Not my doing, but a victory lately none the less.
*I finally painted the bathroom!
*I'm sure there are more things I'm forgetting. Pregnant brain and all.
*and most importantly-all that good stuff at our Perinatology appointment and ultrasound last Friday. If somehow you missed that, scroll down just a tad. Plus new hospital, new specialist, and uber on top of it people-the "we'll contact you within a few days to get you in within a week or two" turned into a phone call 4 hours later an appointment on Thursday at 8am! Wow!

So really, a good run was the perfect cap on the week.
Saturday was beyond beautiful-a perfect running morning. Though I am getting a little slower every week (sometimes it seems every day), the fact that I can still go the distance thrills me to death. I am learning to listen to my body in a different way; Last year it was hearing the "this hurts, stop!!" and pushing through it. And then pushing further and harder. This year it's been a big challenge to get those "this hurts!" signals from my body and figure out if it's just getting to that point of the good ache or if it's really hurting and I really need to slow down or stop. I think I'm finally figuring it out.
I guess the fact that I end up laughing out loud when I finally heard the line "I was forced with remorse to learn the bassoon" in one of the songs on my playlist when I have five miles under my belt is a good indicator that I've found the balance.

Finishing with a smile on my face, a focus on distance instead of time (I'm over an hour for a 10K now though-oy...ok, so mostly focusing on distance and lesson time...), and feeling good the rest of the day instead of dead (which can be a challenge during pregnancy without the running) is even better news.

Definitely a victory lap.

Looking forward to this weekend's virtual 10K, and hopefully another the weekend after that. Unless I can find a decent Memorial Day race that doesn't have a steep entry fee.
A local city celebration 5K is the first weekend in June, I'm wondering if my body will still be willing to pull off a 30 minute finish in another two weeks. Hoping so. If no, I'm proud of my mind for letting a 30minute finish be an ok thing.

Answered Prayers, Miracles, and a STELLAR appointment

We were so nervous about today's appointment after that lovely (ARGH!) experience we had with the "Dr" we saw last time. (Just because you have a PhD does not make you a doctor. But enough about that.) We have been praying that we would be able to meet with a dr that would be helpful and understanding of our hopes and fears and desires for this pregnancy and for our baby. When someone other than the dr we originally saw today walked in we were nervous. Dh even said right up front, "uh, isn't Dr E here? We are supposed to see HER." The Dr said she was more than happy to get Dr E if we preferred and wasn't the least bit bothered, but I kind of explained the concern and the issues we had last time, and told her that as long as she was a perinatologist I was happy to give her a shot and if we had concerns we could pull Dr E in as well. This woman, Dr H, was WONDERFUL!!! She was so kind and understanding and absolutely dead on with everything we've researched, been concerned about and hope for and want concerning both my health and Sam's. From our plan for care, to delivery, to tests....it was like a gift wrapped answer to our prayers! She was a gem!

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

For obvious reasons my race schedule this year is pretty much zero. When the 1/2 in March got bagged due to being thoroughly entrenched in morning sickness (still) I was bummed. Then life came crashing down 5 days later so that really didn't matter anymore. There's a nice dose of perspective for you, huh?

Since I'm (already?!) getting to the point where I can't guarantee that my veins won't be trying to burst from my skin, my knee won't totally let go, that I won't wet myself or that my sciatic nerve might actually behave, scheduling any race at this point is iffy. Don't get me wrong, I'm still eyeing a handful of 5 and 10k's in the next two months.... (shh....don't tell my husband....)

While I am all about getting my run fix on a daily basis while it's still possible, it is different when you are running for something other than to just run. It's nice. It's motivating.

I've found that virtual races offer a nice fix for me. And for the typical steep entry fee for even short races anymore.

The latest was the 5/5 5K hosted by a runner whose blog I follow.

So I signed up. And signed Sam up too.

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.

This looks like pre-race belly mug shots or something.

Yes-those are his actual feet on his race bib. I love baby feet. Ultrasound feet pictures are to die for. And yes I made him a race bib. Take that.

Number 8-since he is of course our number 8, and 169 for me, as today I am 169 days pregnant.

What I lack in creativity I make up for with......uh.....something else I hope.

I love running against just me-not worrying about anyone else around me-but still hoping to push myself.

And it was a beautiful day for a run!

Since this is a "pick your own course" run, I chose to start at Unity Pass and run home across the valley. Even the antelope were out for a while, which is always fun to see while out on the path.

Also, I learned that apparently the effort of trying to take a picture of myself mid-run using my phone must send my brain into overload.

Do you see that vein? It looks like it's going to explode right out the middle of my forehead. Nice.

Note to self: photos of surroundings while running, fine. Photos of self while running, uh, no.

Out of focus and sweaty, but still smiling.

The official finish time: 30min 22 seconds.
That sounds SO slow to me for a 5k, but I'm totally pulling the pregnancy card on this one. And since it's under 10min/mi, I'll live with it.
Average of 9:49/mi, though I did apparently find a burst of energy in there somewhere as the good old Garmin says I topped out at 7:50 at some point. Go me! er, Go us!

It's a little bittersweet to think that Sam might never race along side me, but I sure love that for now he is running with me.