THE CIRCLE OF LIFE

As my family is awaiting the births of a couple new members of our family (both my cousin Shauna and I are due soon), we are saying good-bye to the matriarch of our family.  Today, my family is gathered in Wyoming to lay her ashes in their final resting place.  I wish I could be there.  I am sad that Priya will not get a chance to meet three of her great-grandmas, Grandma Duvall, Grandma Bonnie, and Granny (Mike's grandma).

My Grandma Bonnie and Granddad Don were married for 68 years.  I can't help but think today how my grandparents were once at the place in life where Mike and I are at now, building up their lives, becoming new parents...  They built a good life together and passed on a legacy of love, values, and great family memories to me.  I respect and admire my grandparents and hope my children and grandchildren will be able to look back at my life and feel I left them with the same.

I wrote a little something on Facebook the day my Grandma died to honor her memory, but I think it is worth reposting to give her the respect due her, so I am reposting it here.  Hearing news of my grandma's hospitalization and then death made me so sad, but also grateful for the life and memories I have, really good ones.

My Grandma Bonnie was one of those people you just can't say anything bad about. She was an AMAZING woman...wife, mother, grandmother, teacher, storyteller, friend, human being. My grandma had a great smile, and she did it often. She was intelligent and kind and full of love. She had many interests and talents, and she had many friends. She helped many people. Her mind was sharp, she had a great sense of humor, and she lived her life well. She knew how to make her home "home" for everyone, full of love and comfort, good food, warm memories. She was the kind of woman you would want to be like. This world has been blessed by her presence. May we all live our lives in such a way that leaves a trail of goodness in peoples' lives. She definitely set the bar high. 

HOUSE ARREST

I heard words I really did not want to hear today..."bedrest until delivery."  I feel like I'm on house arrest or something, but worse, because I'm not even supposed to clean or exercise or do any of the nesting stuff.  BLEH! 

Despite the facts that baby girl was given steroids for lung development at 31 weeks when I went into preterm labor and is HUGE for her gestational age, my doctor wants me to stay pregnant as long as possible.  We are almost at 36 weeks now (not very premature if she came tonight even), and there have been no changes in my cervix since we left the hospital at 31 weeks.  So, in my head, I'm thinking she is going to keep baking until term at this point.  This is good, because we won't have to worry about premie issues on top of everything else, but this FREAKS me out, because I'm thinking it is inevitable that I'll end up with a c-section, which I really wanted to avoid.  Of course I don't want to be trying to delivery a possible 10 or 11+ pound baby any other route either, so...  Who knows, maybe she won't get SO big...

Priya LOOKS like quite the chunker already from what it looks like on her ultrasound today, but we won't get a weight until next week.  The sonographer was telling me how amazingly dense and thick her leg muscles are and told me the doctors and sonographers have been marveling at how chunky her legs are for a while now.  This, of course, is part of BWS (increased muscle mass and subcutaneous tissue - aka, our chunky monkey).  I have to admit, her thigh muscles were quite impressive today.  Maybe she will play soccer like her dad.  Might have to start looking for little gear.  

She kept her tongue inside her mouth today, but her hair was floating all over the place!  I can't wait to see her hair and put bows in it!

.As far as the amniotic fluid, it is definitely on the rise again, measuring above normal today (27 cm).  I hope that stops or things are bound to get quite uncomfy for me again soon.  

SHOWERS OF BLESSING

Yesterday was a sunny day, but it was pouring down love in the afternoon, when some very special people gave Priya a beautiful baby shower.  I missed the first shower after going into preterm labor, so the shower came to me this time.  Mike came home and had fun looking through the gifts and pictures and eating goodies left behind.  Today, we are still enjoying the pretty flowers and leftover blessings.

Oh, and we made it to 35 weeks on Saturday!

REMINDER TO SELF - GROW THICKER SKIN

One of the parents in my BWS support group had an unfortunate, but all-too-common, incident with a store cashier this week, and it reminded me of how thick I'm going to have to let my skin grow after Priya is born.

Because of her syndrome, she will likely have a thick, wide, and possibly unusually long tongue that will be difficult to keep in her mouth.  It's one of the organs that typically goes a little bonkers with BWS.  Another common symptom of BWS is just growing greater than 90% for height and weight.  So, a two-year-old might look like a four-year-old with a two-year-old's behavior.  That sometimes causes people to look at a parent and child and think they have a really immature and unruly kid, when really their behaviors might be totally age appropriate.  Or, another outcome is the child's size and the tongue hanging out of the mouth causes people who don't know better to assume and sometimes make comments that our kids have Down's Syndrome, which they don't.  And it is frustrating, because Down's Syndrome is a whole other syndrome with a whole different spectrum of issues.

It may be difficult at times of high stress to remember that people are naturally curious and will ask questions or make remarks about you or your child that are based on outside appearances and oftentimes ignorance.  It is up to me, as a parent, to educate people in a constructive way.  Easy to remember now, but it will be harder to remember in the heat of a moment.  So, reminder to self, grow thicker skin and be patient with people, yourself, and your kiddo.   I know friends who have already had to go through this kind of thing with their children who are either adopted, have Down's, larger O's or other special situations, and oftentimes when I first hear their hurtful stories, the thoughts of what I'd want to say to bold strangers are not too constructive or kind.  I hope I can remember to deal with these situations gracefully when my turn is up.  So, here I am finding myself pondering some good responses so that I won't be taken off guard when they do happen...

But another reminder to us all, don't judge a book by it's cover.  Give people--especially strangers--a break.  We really cannot know what a person or family is dealing with unless we know them personally.

A HEAD FULL OF HAIR

So, today was the first time I've gotten a good look at what a full head of hair our little girl is growing!  It was so exciting to see; I love it when babies have a lot of hair!  She was also very busy sucking on her fist, which was cute.  Enjoyed seeing her today.  

A NEW DAY

So, I figured I better update from yesterday.  I kind of went off track after seeing Priya's macroglossia, because it was a reminder that we really don't know what to expect for her (healthwise) as her life unfolds, especially early on.  There can be a pretty wide spectrum of issues when dealing with BWS, but fortunately many don't show up a lot of the time, and the outcome looks pretty great once these kids reach adolescence.  So, pity party is over.  Today is a new day.  No sense in worrying about what might happen with Priya's syndrome in the future, because things might not be too bad for her, and we won't know until life unfolds day by day.  Worry isn't helpful, nor does it prevent bad things from happening.  It just saps the joy out of the good days.  And the good in today is that our baby girl is still baking along as she should be, and that is really good considering we were in the hospital for preterm labor just 3 weeks ago.

Another good thing that happened this week is that I met with an AMAZING pediatrician!  My boss, who I consider to be a very intelligent and competent physician herself, gave me his name.  Her daughter uses him, as well as several other radiologists and a fellow sonographer.  I figure if other doctors like him, he must be pretty good.  Well, he IS really good!  He is brilliant, in my opinion, and is surprisingly on top of the game when it comes to his knowledge about BWS.  He pretty much seemed to know everything the specialists knew when I sat down with him, which is pretty great for something that is rare (I gave him no prior medical history before sitting down with him).  He was also very personable and comfortable to talk to, and he said we are just going to treat Priya like a normal child (because she is) that has some extra medical concerns she has to deal with. I couldn't have been happier leaving his office, and I have full confidence that Priya will be in good hands.  So far, I feel that we are surrounded by the best group of medical professionals possible to take care of her.  I feel so fortunate to have these people on our team! 

34 1/2 WEEKS, A BIT EMOTIONAL

I am feeling kind of bummed after my doctor's appointment today, and today is the first time in a long while that I've had a good cry about Priya's BWS.  It's not that I didn't know it was coming, but today was the first time I started seeing evidence of macroglossia (enlarged tongue) on ultrasound. It was just a reality check that she does have a syndrome, and we don't know what organ systems will be affected and to what extent.  As far as her tongue, she may end up with only slight macroglossia, but it could be severe before all is said and done, and I just hate the thought that she may eventually have to have a tongue reduction surgery so that her tongue won't affect her breathing, feeding, drooling, and speaking.  Not to mention, it does cause a more syndromey appearance.  It's just a bummer.  My OB was trying to be positive about it last week and mentioned how great it was there were no signs of it yet.  I told him, yeah, but I know that it's just a matter of time, since 97.5% of children with BWS have macroglossia.  He said, yes, but he usually has already seen evidence of it by 33 weeks. Everything that I've read on it, though, says that it starts showing up closer to the actual due date and can really start growing right after birth.  So, even though I knew to expect it...I was still in a hopeful denial that was rudely interrupted by reality today.  DANG IT, BWS!!!

Other than that, my amniotic fluid has taken a slight upward trend again, but nothing too significant.  Hopefully it just bounces up and down a few cm each week and does not continue to rise.  Today it was just at the uppermost limit of normal before being considered above normal.  Not too bad, considering where it used to be.

Also not the end of the world, but it did bum me out a little is that my doctor will keep me on bed rest until AT LEAST 37 weeks.  Usually it is 36 weeks, but they will be more cautious with Priya because she will have to have surgery when she is born.  The longer she bakes and the bigger she gets, the better it will be for surgery.  SO, it's totally worth it, but it just wasn't what I was expecting to hear today, so it threw me for a loop.  I had a little pity party for myself and reset my expectations.

GOOD NEWS is Priya is always moving and breathing great during her scans, her O is teeny tiny, and it shouldn't be too terribly long before we finally get to meet this little bundle of sweetness.  I hope she is the healthiest little girl she can possibly be and that we can take her home soon after she is born.  

33 WEEK CHECKUP

Priya is weighting 5 lb 12 oz, amniotic fluid has decreased to 21 cm, and my contractions have slowed down to the slowest they have been since I was approximately 20 weeks pregnant (very much in normal range).  Also, I am retaining like ZERO water (bed rest and lower amniotic fluid works wonders!).  My ankles haven't look this good since before 18 weeks--basically pre-pregnancy on that front!  Over the past 2 months, I haven't gained any weight (with exception of a 1 lb fluctuation once) despite adding extra fat into my diet, and today showed a 3-lb drop.  I thought the doctor would be upset, but he said it is because of lower fluid everywhere, so everything seems to be going really, really well.

So, basically, I am both feeling and doing better at 33 weeks than I did my whole second trimester.  I think we will make it to term.

THE THINGS YOU DISCOVER WHILE ON BEDREST

 ...Like the fact that your pets actually like each other (until they see they've been discovered).

ALMOST ANOTHER WEEK CLOSER TO THE GOAL!

We will be 33 weeks on Saturday!  Amniotic fluid levels are high normal now, so that is an improvement.  Blood sugars are under control with diet and a little medication in the evenings.  Procardia was upped after my hospital stay, so contractions are more sporadic, but do last twice as long when I have them.  I think the sporadic part is actually a good thing.  No new news other than that.  The nurse practitioner did tell me when I asked, that I am not allowed any extra excursions like pedicures or hanging out on other peoples' couches, so I am strictly banished to the house and doctor's appointments.  I thought those were rational requests since I'd still be off my feet and resting, but I guess I'll have to wait til we get a little closer to 36 weeks.  That is only 3 weeks away, so I suppose I can handle it.  When I was younger, mom used to tell me to do myself up even when I was sick, because if you look better you feel a little better too.  So, even though I am home all day, I have been getting up and getting dressed and doing hair and makeup so I don't feel like such a lump.  Mike also suggested I make myself lists of things to do (like write a letter, prepare tax papers, do a CEU for work, read a chapter, etc.) so I can check things off and feel like I am accomplishing something.  I do think it all helps.

I miss being able to peak in on Priya at work.  Other than profile pics at the OB's office, I guess I will have to wait to see her face again until she is born like everyone else.

32 WEEKS AND COUNTING

We have hit the 32 week mark, which is great!  Every week will be a reason to celebrate after the past few days that we just had.  Going into preterm labor at 31 weeks was a bit scary, but we received GREAT care at Vanderbilt, and the doctors and nurses there have done everything they can do to prepare Priya if she does decide to come early.  This whole experience has made us realize that we are ready to welcome our little girl home when she is born and find out what our new normal is going to look like.  However, we can definitely wait until she has baked a little longer to do that.

For now, it is bed rest for me.  It's going to be hard (I would much rather pass my time at work), but it's what is best for Priya.  She does need to stay in a little longer so that she can have the best outcome when she is born.  She has enough to deal with with the omphalocele and BWS.  We need to get her to term!