Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, July 25, 2011

Photos: 21 weeks compared with 27 weeks

I wanted to see them together, so I put Meagan's 21 week brain picture next to her 27 week picture.  It's amazing as I go along in this process how the photos don't phase me much ... but when I saw them next to each other, I realized "wow"... how different they were and could really see the fluid increase that had occurred.

21 weeks:

27 weeks

Thursday, July 21, 2011

Mommies and babies and kids. Oh my.

I'm finally almost finished going through all the girls old clothing.  We just had so much ... after 4 girls, things add up between original clothes we had, hand-me-downs, gifts from relatives and friends, etc...  I figured it was time to downsize.. in a BIG way.  I started to go through all the clothing - bagging it by size and detailing what was in each bag..prepping it to sell online. And then bagged clothes for each age for Meagan to use.  I also set aside a storage bag with certain clothing items I want to keep for my girls when they get older - a special dress, or meaningful outfit given by grandparents that they all wore..etc..

I had lots of jammies in the Newborn size, but, also quite a few VERY cute outfits I had used with my other girls.  Unfortunately, these outfits were pants with tops.. and the tops were not stretchy. At. all.  So, many of these went into the sell pile until I know more once Meagan is born.  Even if her head size isn't "that" much bigger than normal, I will personally just feel uncomfortable pulling these tops over her head, especially after surgery.  They aren't stretchy at all, so, why keep them. 

I had put Maura down for a nap so she could rest.. and not undo everything I accomplished.  The older three girls were playing nicely together...so I took advantage and decided it was a good day for clothes sorting/decluttering.  After a while, it got so quiet, I had to check on the older three.  Most of the time, quiet in this house is equivilant to 1 or more children up to no good.. unless it's 3am and everyone is asleep.  I peeked downstairs, and I saw a TON of toys gathered at the bottom of the steps.  So I decided further investigation was needed.  As I came down to the main level, I realized that every room of our house had been taken over, quite obviously, by dolls, doll clothing, strollers, stuffed animals, and other toy items.  I saw the girls sitting with their babydolls on the couch and asked what they were doing... they said they were playing "mommies, babies and kids."  They did ask me to play with them.. when I asked what I should be, they answered "The mom." Go figure.   The girls continued playing and were feeding and changing their babydolls...they were taking them to ballet and to friends' houses for playdates... they had built their own "houses" around my whole downstairs where they each lived ... they were having a complete ball just being in "imaginary land" and playing together....and destroying my house.

I'm a pretty tough girl.  I don't take much of anything from anyone... I pretty much know what I want in life.. and I get it.  I have no patience for irresponsibility, laziness...well, for much of anything for that matter.  And so when Meagan first got diagnosed with Hydrocephalus, I took it much like any other news in my life - sure, I had tears drop at that diagnostic ultrasound..but.. then...that was it.  It was on to plan and attack mode and back to tough old me.  The thing about being tough in this kind of situation, is that in reality, it is a big mask for worry and fear about the unknown.  I am extremely worried about Meagan.  With each scan, seeing that remaining brain tissue shrink and the fluid grow, really gets to me.  I wonder how she will be when she's born.  I am paranoid that she won't make it to that point -- the poor kid probably never sleeps because if there is no movement for even a few minutes, I'm eating something sugary, or poking and prodding at her to get her to kick me.  Every cramp, twinge, or contraction makes me stop everything I'm doing and make sure she's still ok.  Every scary dream I may have at night makes my thoughts swirl the next day and wonder if there was any truth to it.. or if it was just a culmination of my fears for her. 

Don't get me wrong -- I am open to whatever Meagan will be.  She has a purpose and a plan...and someday we will know what that purpose is.  However, the waiting and the waiting and the waiting is just torturous!  Will I love and accept her no matter what? Of course.   Do I still worry about what that existence will be? Of course. We all yearn as parents for our children to be able to experience things the way we would want them to, or the way we "picture" them experiencing life.  This diagnosis changes that.  I have to be open to what her experiences will be and how she needs to accomplish that.  In this case, it is out of my control and I hope I am strong enough to help her along whatever path is meant to be.

So while I was extremely happy today, seeing my older girls play so nicely together for several hours.. [helping each other, laughing and tickling each other, asking each other questions and playing imaginary games together] so I could get a lot accomplished .... It also brought a sense of sadness over me because my first thoughts went to "Will Meagan ever do this with them?  Will she play dolls? Will she laugh? Will she have a wild imagination? Will she fight with her sisters, hug them, kiss them, love them? Will she one day be sitting with them playing 'mommies, babies and kids'?"

And such is the ultimate irony of a Hydrocephalus diagnosis. This diagnosis does not provide closure... it only provides the unknown.

Meagan - I hope you are doing ok in there. I keep looking over and over at your 4D picture.. it is amazing! You have Maura's nose and lips and you resemble your older sisters in your eyes.  You are so extremely beautiful.  I feel you move, kick, jab me in the sides. You get angry when I rest a cold drink or my phone on my stomach.  You seem to know when the ultrasound tech wants to get that cute face picture because right when she wants to snap it, you suddenly pull yourself back into the darkness.  I hope one day you are sitting there, making me crazy by cluttering my downstairs with a complete disaster of dolls and strollers... I hope one day you are telling me about some silly imaginary game you are playing with your sisters ... I hope one day you are playing 'mommies, babies and kids' by being just that - an active part of our everyday lives.

28 week OB check

I had my regular OB check up today.  It was a lovely day of glucose testing, blood drawing, and Rhogam shots. Note the sarcasm.

I drank the lovely sugary drink this morning - luckily our practice lets us take it home so I can get it nice and cold.  The drink itself really isn't that bad ... it's more the sugar high it puts you on with NO food in your stomach that is uncomfortable.

I saw my doctor after the blood draw.  Routine stuff - belly measurement (28 weeks), heartbeat check for Meagan (140s), and just talking in general more about Meagan's condition and plans for delivery.  My doctor was very supportive and listened.  Today was just one of those appointments I needed to talk more.  Normally I have it all "together" and I'm in and out..but today I just needed to chat, and she was patient with that. 

Finally before I left, the nurse came back in and gave me my Rhogam shot.  I hate that thing -the shot itself isn't bad at all..but the medicine burns. Ugh. It is not comfortable! 

Now I go back in 2 weeks.

Monday, July 18, 2011

Photos: 27 week ultrasound

Meagan's face/arm

Meagan's hand and foot. She kept reaching down and grabbing this foot with her hand. It was adorable.

Meagan's brain photos from today's appointment. As you can see, still absolutely filled with fluid. No measurements were able to be taken today except head circumference which is 2 weeks ahead.

Meagan's 4D pictures. She loved having those arms /hands over her face, but the tech got her to move them for just a split second and snapped these photos for us. :)

27 weeks Update

We returned to the Perinatologist today for our 27 week scan.  The tech we had was very nice - she spent a lot of time on the ultrasound and got lots of good pictures.  This was good since last time Meagan was laying to the side and they couldn't look at "exactly" what they wanted.  They said her midbrain seemed to be functioning well still, which is always reassuring because all her involuntary movements (heartbeat, breathing..etc.) are controlled from this point.  He didn't take ventricle measurements that I know of.. if they did, he didn't tell me when I asked.  I may call back to double check.  I realize it won't change anything at this point, but, I'm an information junkie...information helps my peace of mind.  So if he did take measurements, I want to know them.  The one measurement that was on her ultrasound that I did see was her remaining tissue measurement.  It said "6.6mm"  Last time it was 9mm so I don't know how much worse this is.  But it's kind of scary to see.

He was able to get head circumference measurements.  As of right now, her body is right on target, at 27 weeks gestation .... her head though is at a strong 29 weeks measuring in the 95th% of a 29 week old baby.  So we are starting to see the discrepency between her actual age and her head measurement. 
The tech we had today was very very nice.  She was 1 of 4 girls herself... and has 3 girls of her own now. She talked to us a lot and after finishing all Meagan's measurements and checking everything she was supposed to check, she asked us if we'd mind if she played around a little with the 4d ultrasound. Of course we said "Go ahead!" So for a few minutes, we got to watch Meagan in 4d and get a few really cute pictures of her face.  It was a nice treat!

The Perinatologist said we come back in 4 weeks again for another fluid check and ultrasound.  He said 38 weeks still looks great for delivery and agreed with my OB that we do it then by csection. 

He seemed much more "at ease" today than ever before.  In previous visits, he was very quiet, "doom and gloom" and very negative, in my opinion. Today, it seemed as though, maybe, we're helping him turn a corner a little bit with the Hydro. I've been telling him for weeks about how so much is just unknown so why focus negatively (when faced with termination)... I've been telling him about wonderful families we've talked to who have a wide variety of kids with Hydro - all different outcomes, but all absolutely gorgeous and wonderful children ... I've been telling him we'll always fight for our daughter. Today,he started talking about great things he'd read, how so much is unknown, how Hydro is such a 'toss up' (a term I'd NEVER heard him use),  and was very 'uplifting' when he talked to us about delivery and meeting our little girl.  It was almost as if he'd really been listening to all I'd been saying to him in the last several visits and was now letting some of it 'soak in' .... so maybe this is another reason for this whole experience. Perhaps the next family who comes in dealing with a Hydro pregnancy will get a little better feedback from him from the start.  If this is the case, then, standing my ground on things with him has definitely been worth it. And Meagan is already touching people's lives before she is even in my arms.

Meagan - you are doing great! Keep it up girl.. only 11 weeks to go!