Friday, February 28, 2014

A little kick in my prayer pants.

Yesterday, the devotion Lysa TerKeurst posted on Proverbs 31 really spoke to me.

It was all about being afraid to praying boldly.

I pray.  And I pray a lot.  Like all-throughout-my-day kind of praying.

And when I pray, I expect God to answer.  I pray for healing for everyone else and I expect it - whether it be breast cancer, cirrhosis, autism, or relationship problems.  I ask God for what I want him to do and I expect that He will do it.  Of course, He doesn't always do it.  But I do ask expecting that He will.

When we found out Rebecca had Trisomy 18, I prayed for her to be healed.  But for some reason, deep down in my heart, I really felt like God gave her this for a reason and that he was not going to heal her.

Lysa put it this way in her devotion:

"So, my hesitation isn’t rooted in any kind of doubt about God.  It’s more rooted in doubts about myself and my ability to absolutely discern the will of God. The reality is sometimes God chooses not to do things.  And if His will is no, while I am boldly praying for a yes, it makes me feel out of step with God."
So, my hesitation isn’t rooted in any kind of doubt about God. It’s more rooted in doubts about myself and my ability to absolutely discern the will of God. The reality is sometimes God chooses not to do things. And if His will is no, while I am boldly praying for a yes, it makes me feel out of step with God. - See more at: http://proverbs31.org/devotions/devo/im-scared-to-pray-boldly/#sthash.2oECDeT3.dpuf


And because of not wanting to feel out of step with God, my prayers for Rebecca felt half-hearted.  Oh, don't get me wrong.  I prayed for her all day long, any time she passed through my mind.  But there was always a nagging sense that they were futile prayers - that God wanted her to have this and my prayers weren't going to be answered anyway so, what was the point of praying for a miracle?

So my prayers began to sound like this:  Please heal Rebecca of her Trisomy 18, but if that's not your will Lord, give us the grace and peace to accept her and love her as she is.  Give us wisdom and discernment after she's born as we will have a lot of decisions to make.  And give us all peace and comfort.

And while that is a good, solid prayer, it began to sound like a concession.  Along the lines of - well, your not going to heal her anyway so here's what I'm asking instead.  Even though deep in my heart, I really want complete, total and miraculous healing for her.

I (yes, little ole me!) had already decided what God (yes, great big all-powerful, all-knowing God!) was going to do so I stopped praying boldly for miraculous healing for my own daughter (while having no problem praying for miraculous healing for any other person) and started praying for all the other things I would need when the healing doesn't come.

And then I read these words from Lysa:

"I wonder why I don’t just boldly pray: God, please heal my friend. And then stand confidently knowing my prayers were not in vain no matter what the outcome. 

The reality is, my prayers don’t change God. But I am convinced prayer changes me. 

Praying boldly boots me out of that stale place of religious habit into authentic connection with God Himself.

Prayer opens my spiritual eyes to see things I can’t see on my own. And I’m convinced prayer matters. Prayers are powerful and effective if prayed from the position of a righteous heart (James 5:16)." 

I, her mother, am the one who should be praying the boldest, loudest prayers of all but I had not been.
And that's going to change.  I'm going to do like Lysa said.  I am going to ask, and ask, and ask yet again for complete, total and miraculous healing for Rebecca not so that God may  move but so that I will be in a position to see Him move any way he chooses.


I am joining the other bloggers at Conversion Diary with 7 Posts in 7 Days.



So let’s ask. And ask again. Not so that we can cause God to move, rather so that we can position our souls to be able to see our sweet Jesus move in any which way He pleases. - See more at: http://proverbs31.org/devotions/devo/im-scared-to-pray-boldly/#sthash.2oECDeT3.dpuf
I wonder why I don’t just boldly pray: God, please heal my friend. And then stand confidently knowing my prayers were not in vain no matter what the outcome.
The reality is, my prayers don’t change God. But I am convinced prayer changes me. Praying boldly boots me out of that stale place of religious habit into authentic connection with God Himself.
Prayer opens my spiritual eyes to see things I can’t see on my own. And I’m convinced prayer matters. Prayers are powerful and effective if prayed from the position of a righteous heart (James 5:16).
- See more at: http://proverbs31.org/devotions/devo/im-scared-to-pray-boldly/#sthash.2oECDeT3.dpuf I'm going to ask, and ask, and ask yet again for miraculous healing for Rebecca.  Not so that God will move but so that I am ready to see Him move any way he decides.


Thursday, February 27, 2014

No surprises.

Yesterday we had another visit to the Comprehensive Fetal Care Center for another ultrasound.

The baby measured 3 pounds, 4 ounces which put her at the 31 week mark even though I am 33 weeks pregnant. That's the 13 percentile for growth.  Which means 87% of other babies are bigger than she is at 33 weeks.  No surprises there.

And her stomach bubble was empty as it has been at every other ultrasound (indicating she isn't taking in any amniotic fluid like she should be).  And it still showed that I have a ton of extra amniotic fluid (indicating she isn't taking in any amniotic fluid like she should be). No surprises there.

And her little index finger and pinkie finger are crossed over the other fingers like they are in most Trisomy 18 babies.  And her little feet are still rocker-bottomed like they are in most Trisomy 18 babies. No surprises there.

She was kicking her feet, punching her fists, and waving her arms around.  This girl likes to move!  No surprises there.

Nothing has changed.

But on a slightly positive note, there are no new problems to report.  The placenta and umbilical cord are doing their job and keeping her nourished even though she is small.  That's one thing they like to check when the babies are measuring small.  So we will go back in three weeks for another ultrasound. 

And the best part of all, we got to see her sweet little face again.



She has her arm raised above her head.  You can see her pinkie finger is folded over her other finger.

And here is a tiny foot.  You can see that it is shaped like the rocker on a rocking chair - kind of curved.

After the ultrasound we headed over to Brenner Children's Hospital and meet with one of the pediatric surgeons.

We wanted to talk with her about the surgery to repair the esophageal atresia that they expect she has.  She was such such a nice woman and explained the problem and what they do to fix it.

I won't go into all the different types of ways the problem presents - I think there were 5 in all.  Each one varied depending on how the esophagus came to an end and whether or not it was attached to the trachea and if so, where exactly it was attached.

After Rebecca is born, the neonatologist would put a tube down her throat to see if it continued into the esophagus or if it stopped prematurely.  We are praying that it continues to go all the way but if it doesn't, then she has an atresia and surgery would need to be performed or she would die because she couldn't eat. 

If she has no problems breathing after she is born and it appears that she might live for a while (and don't ask me what a while is - I guess it's anything other than a few minutes or hours), and there don't appear to be any heart problems, then Dan and I would most likely ask to have the surgery done.

At that point, she would be transported from the NICU at Forsyth to the NICU at Brenner's and the next day they would do surgery.  The surgeon said the surgery would last from 2-4 hours unless there were other problems they found with the esophagus and trachea.

She said that even though Rebecca has T18, she has no problem doing the surgery on her and she said her colleagues all felt the same way.  (I have read on line that many doctors, once finding out that a baby has T18, only recommend hospice care and just letting the baby pass away.  Thankfully we have yet to encounter any doctor who feels that way.  In fact, we have been repeatedly told that they will take any and all measures necessary to keep her alive, or if we choose, they will do nothing except provide pallative and hospice care.  It's all up to us.

And of course, we know it isn't all up to us.  We are still praying for a miracle.  And like Dan said yesterday after seeing no improvement in the ultrasounds, "God really is going for a big last minute miracle, isn't he?!" (Oh, how I love that man!)

And if He doesn't provide that miracle, we will continue to pray for wisdom and guidance as we will have many tough choices to face.

Thanks for your continued prayers and support.  Through this whole pregnancy, I have felt peaceful and calm.  Oh, sure,  I have my moments, but overall, I think I'm holding it together pretty well, and I know that's only because of the grace of God and the fact that so many people are covering us in prayer!

So keep praying.

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective. - James 5:26 NIV


Continuing with the 7 Posts in 7 Days Challenge hosted by Jen at Conversion Diary.

Wednesday, February 26, 2014

OB update.

Day 3 of the 7 Posts in 7 Days Challenge hosted by Jen.

Yesterday I was officially 33 weeks pregnant.  I had my  every two week visit to the OB.  (Technically I should have gone on week 32 but due to our 2 week trip to Massachusetts at Christmas I got off schedule but really, I guess it doesn't matter.)

The baby's heartbeat sounded good and I measured 36 1/2 weeks pregnant.  Still measuring big due to all the extra amniotic fluid (polyhydramnios due to the baby's expected esophageal atresia) but I guess that's not going to change.

When they found out that I had been having contractions for about a week, the doctor checked me to see if I had dilated any. Luckily my cervix was closed and elongated.  That's a good thing!  Rebecca needs to stay put until April 10th!

All those contractions I've been having are just Braxton Hicks contractions but let me tell you, while not super painful like real contractions, they are super annoying!  So if I'm grumpier than normal (ha, my loving family wants to know how they would even be able to tell!) I may be having a contraction, so just bear with me.

Dan is leaving for Ireland in two weeks so I was glad to hear things were as they should be.  If I had been dilated even 1/2 a centimeter, I was going to make him stay home. He's already missing another trip that was scheduled for the end of March/beginning of April because it was just too close to the due date.

I go back again in two weeks and after that I will go every week until April 10th the day of my C-Section.  We are praying that I make it until then and that Rebecca doesn't decide to make an early appearance thanks to all that extra fluid.

We have  another ultrasound scheduled this morning and hopefully that won't show any new problems.  After that meeting we are headed to Brenner Children's Hospital to talk to a pediatric surgeon about everything that is involved in surgery to repair the esophageal atresia.

Check back tomorrow morning for an update on today's events and hopefully another cute face picture.  Rebecca hates ultrasounds and does her best to hide her face during them.

Tuesday, February 25, 2014

Another day at the court.

Attempting to keep up with the 7 Posts in 7 Days challenge.  This one is a little bit of a cheater post since it's mostly pictures.  But, I have an OB appointment in a little bit and an ultrasound tomorrow so I'm sure more wordy posts will be forthcoming.

In the meantime, enjoy some pictures of my kids playing basketball.

(And might I add, even though all the kids gave it their all, their teams still lost which was a big disappointment but, you win some and you lose some.  Or as the case may be with this season - you win a couple and lose all the rest!)

Peter made a couple of baskets on Saturday.  Here's one of them:

Up....

up....

and in for 2 points!
And then there's Sarah who played well on defense and also took a ton of shots but only made one basket.  I got pictures of all the shots she took and missed but decided to put the camera down for her last shot of the game and just enjoy the shot.  And that's the one that went in!  So, I don't have it on film but a friend got it on video which she posted to Facebook but I can't save and put it here.  This missed basket shot will have to do:

Up....

up....and, well, since it didn't go in, there's no picture!

Monday, February 24, 2014

Send in the cavalry!

Two weeks ago Peter approached me to find out if he could buy a bird with the money he has saved up.

"No," was my response.  And it's typically my response when approached about a pet.  The only reason we have two cats is that someone dropped them off at our front door and I was too much of a softie to take them to the shelter.

He could tell that there wasn't any room for argument when I told him my reasons:  They are noisy.  They are dirty.  I hate birds.  End of story.

About 15 minutes later he came back and asked about a turtle.

I told him to Google them, find out what kind he's interested in, and what is required to take care of them and we would see.

Surely we could handle a harmless turtle.

About 15 minutes later he came back and told me about what kind of habitat they needed and what kind of food.  It all seemed reasonable so I told him that on President's day (no school) we would head to the pet store to price everything out and to see if he had enough money to cover it.

We naively trotted into the local pet store this past Monday and asked the owner if they had turtles.  Imagine our shock when he informed us that it is illegal to sale turtles in North Carolina. Apparently they carry salmonella.

Peter did his best not to cry in the pet store but did shed a few tears on the way home.

After ranting and railing against the state of North Carolina for several hours, he approached me about a pet snake.

I told him to research them, blah, blah, blah, you know the drill by now....

He immediately began to Google them and was very pro snake until he learned that you needed to feed them mice - preferably live ones.  He didn't think he had the stomach for that so he nixed the snake idea himself.

Whew!  Pet problem solved on it's own and I didn't have to be the bad guy! (And the state of North Carolina didn't have to take any further maligning from my son.)

30 more minutes passed and he came back into the room and asked if he could have a gecko. He, finally learning the routine, had already researched their habitat, the food they ate, the types of geckos available at Pet Smart and the pricing.  He felt like he had enough money and asked if we could go to Pet Smart.

Sarah had a Girl Scout event on Friday night so as soon as Dan got home from work, we headed to Pet Smart.

He found the leopard gecko he wanted so we started looking at habitats.  They were a little pricier than we thought but we found one that contained the habitat, the decor, the special flooring, the heat lamps, etc. He had just enough for all of that and the gecko. (Roughly $175!  Yikes!)

But he kept wanting to talk to an employee to make sure that we had everything we needed.  Before we could locate someone, I found a pamphlet on geckos.

And y'all, this is where it all fell apart. Apparently Peter's research wasn't quite as extensive as it should have been.

Because geckos are naturally found in the dessert, you have to keep their habitat to desert like conditions. Which means during the day you have to regulate the temperature to between 85-95 degrees.  At night you need to keep the temperature in the aquarium to between 65-75.  And this must be done by remembering to turn on an under-tank heater on in the mornings and off at night.  And thermometers must be kept in the tank and monitored to make sure the temperature is correct.

The humidity in the tank must be kept between 10-30% and this is done by misting the gecko and the tank every other day or using an automatice fogger, mister, or drip system.

The more I read, the more upset Peter got.  He could sense the gecko slipping away.

We finally talked to the manager (who happens to by my cousin's daughter and very knowledgeable about geckos).

She confirmed everything we read in the pamplet and also told us we need to get another type of bulb (a UVB bulb) for reasons I can't remember right now and then dropped them bomb...

Geckos eat crickets.  No problem, they had dried crickets.

Um, yes problem.

Geckos need to eat live crickets.  And not just any type of live crickets.  Crickets that have to be dusted with a calcium supplement twice weekly and a reptile multivitamin once weekly.

Yep.  You heard right.  We would have to buy a cricket habitat in order to keep the crickets alive and ensure that we were feeding them vitamins before we fed the to the geckos.  And the cricket's life span is only about a week so this would involve a weekly trip to the pet store for a fresh supply of live crickets.

Peter was very upset but wisely came to the conclusion on his own that there was just too much involved and he didn't think he handle all of that responsibility.

But he wasn't about to leave the pet store empty-handed and heart-broken.

He decided that a Betta fish would be more his speed.  A mere $25 dollars later he had a bowl, a betta, and some food and we were out the door.




Here's hoping we can keep Kihei (which means cavalry in Japanese) alive.  We don't have much luck with fish around here.  Look how little they are here. Takes my breathe away.


I'm attempting to join the other crazies at Conversion Diary by writing 7 posts in 7 days.  We'll see if I make it!  And click on that link if you are interested in finding any new blogs to read!

Saturday, February 22, 2014

Another week...another belly shot...

I've got a big week next week...another OB appointment on Tuesday and another ultrasound followed by a meeting with a pediatric surgeon on Wednesday. 

In the meantime, it's time for another belly shot!

Week 32, Day 5








Wednesday, February 19, 2014

A pregnant, 84-year-old curmudgeon who loathes winter gives a retrospective look at last week's snow...




Last Wednesday afternoon around 12:30, it started to snow.  And it continued to snow and ice here until Thursday afternoon around 3:30.  And for this part of North Carolina, that's a lot of snow and ice.  In fact, I believe I heard the weathermen say that we haven't gotten that much snow in 15 years. 

Needless to say, my Facebook page was bombarded with people playing in the snow and building snowmen and having snowball fights and BLECH!  I was totally over it all before the snow even stopped.

Blame my pregnancy, blame the fact that I'm really an 84-year-old curmudgeon at heart, or blame the fact that I loathe snow and cold weather.  Whatever the case, I was over it.

I almost posted pictures of my kids at the beach on my Facebook page in retaliation.  But I thought better of it and just slowly backed away from Facebook until the snow pictures ceased.  Bring on warm weather I say!

And lest you think I'm a total grump, my kids did play in the snow with their friends.  And my plan was to trudge down to the my parents backyard where they sled and take some pictures for posterity's sake (just not for my Facebook page) but the timing didn't work out.

We went to my friend Jennifer's house and I sat inside and talked with her while the kids played outside and that just seemed so much better than trying to be outside taking pictures.  Again - pregnant, curmudgeon, snow-hater....

But, here are a few pictures of our long snowy weekend.  (The kids also had Monday off for President's Day so we got to spend a lot of "quality" time together.  However, I have very few pictures to show for it.)


We did make snow cream.  Three large batches of it.  Sarah and I ate way more of it than Peter.  Snow cream always reminds me of my grandmother Lois.  I have fond memories of eating the snow cream that she used to make!

Why does this smile look so forced?  Oh, right...pregnant, curmudgeon, snow-hater.

Dan and I always give the kids treat bags on Valentine's Day.  Here they are right after they managed to roll out of bed around 10:00 to open them.  (Well, to be fair, Peter was up much earlier.  Sarah's the one that could sleep all day!)

Here's the obligatory snow-covered house and yard picture which I managed to snap while checking to see if the mail had been delivered.  And in case you are wondering, no it had not.  I think the mailman took a two day vacation as well!
When I picked up the car from the shop on Monday, the mechanic who laughed at me gave me this.  I immediately gave it to my brother who collects scrap metal for profit.  I figure someone should profit from my largeness.
Thankfully, yesterday the kids went back to school and the temps were in the low 60s. 

But we did have thunder and lightening last night which according to all the old wives means snow in 7 - 10 days.  I'm not even going to think about that.  I'm just going to enjoy the rain and high 60's we are experiencing today. 

Monday, February 17, 2014

I keep telling you I'm big. This is proof of exactly how big.

I keep telling you I'm big.  This is proof of exactly how big.

We got a nice snowstorm on Wednesday afternoon and through the day on Thursday.  So my husband left his old 98 Malibu in the garage and took my Explorer to work on Thursday morning.  The roads were still icy on Friday so he drove it then as well.

Yesterday while he was doing some painting around the house, I decided I would be a good wife and take his car, which was filthy from driving home in the snow on Wednesday night, to the car wash.

I grabbed the keys, opened the garage door and sat in the driver's seat. Literally, the second that I placed my ginormous body into the driver's seat, I heard a very loud pop.  It sounded like the world's biggest balloon had just been popped in my ear. 

I immediately got out of the car and started checking the tires because I couldn't think of anything else to check.  I had Dan come out and he checked the tires and everything looked fine so I continued on my merry way.

As I was backing the car out of the garage, I could tell something wasn't quite right with the tires.  I called Dan to come back outside and he drove the car down the driveway and said he was going to take it for a spin to see if he could figure it out.  He only got halfway down the driveway before he hopped out of the car and started looking at the front tire on the driver's side.

He had found the problem.

The metal coil/spring that attaches the tire to the care had split in two!  In two!!! 

The weight from my gigantic body sitting in the driver's seat caused the coil (the thick metal coil!) to break in two!

There was no way we could get the car to the shop so I called them this morning and had them send one of their tow trucks.

The mechanic asked me what was wrong and I showed him the broken coil.  He asked how it happened and oh, the laughter and hooting and hollering that went on after I told him it happened as soon as I sat in the driver's seat.

And then after a few minutes of laughing, he composed himself and said he felt bad that it happened when I sat in it.  Yeah, right, kid!  I'm sure everyone at the shop is getting a huge laugh right about now!

But, in all honesty, it is pretty funny.  And I'm just thankful that it happened while I was backing out of the driveway and not while my husband was driving down the interstate.

And just to give you an idea of what exactly I broke in case you aren't familiar with coil springs, here is a picture of a coil spring and strut that was used on the Chevy Malibu from 1998-2003:

 And yes, that is solid metal.  And yes, my weight apparently caused it to split in two! 

Sunday, February 16, 2014

Wednesday, February 12, 2014

I'm how big?!

At my OB check-up last month, the doctor measured my stomach and said I was measuring almost but not quite a week larger than my due date. And he said that was in the normal range and nothing to worry about.

But I knew that was going to change yesterday.

I was officially 31 weeks pregnant yesterday and as I laid back on the table for the nurse to get the baby's heartbeat, she exclaimed, "Your chart says your only 31 weeks pregnant?! Is that correct?"

"Yep.  31 weeks today."

"Oh my!  You look much bigger than 31 weeks!"

And I feel much bigger than 31 weeks.

When the doctor came in to take my measurements, I measured a whopping 34 weeks!

I knew I was big, but, wow!

My super-size in due to all the amniotic fluid I'm retaining because of Rebecca's probably esophageal atresia and most likely not due to all the Girl Scout cookies I've been consuming.  Although, I'm sure those are the sole reason my rear end and thighs look like they look! (I can't blame all of this on the baby.)

While I was in the office yesterday, we scheduled my C-section.  April 10th is the big day, assuming I don't go into labor early thanks to all the extra amniotic fluid tricking my body into thinking it's time when it's really not.

Dan has two trips out of the country scheduled for March.  We were trying to pin the doctor down on whether or not I would go early.  Of course, they can't answer this.

With Peter, they finally had to induce me when I was a week past my due date and then because the umbilical cord was wrapped around his neck they ended up doing a C-section.  With Sarah, I really wanted to try a VBAC so the doctor gave me until my due date to go into labor naturally.  When that never happened, we scheduled a C-section.  Based on this, the feeling is, perhaps, I will hold out until April 10th.

I hope that's the case because little Rebecca needs as long as she can in my belly. She's got a big fight when she gets out and I don't want her to come out until she reaches the 39 week mark!

And plus, I am becoming quite selfish with all of her kicks and punches. I want to keep enjoying those as long as possible. 

Tuesday, February 11, 2014

Pinewood Derby Results.

Dan and Peter had three days (instead of the three weeks they usually spend tinkering around) when we returned from Massachusetts to get Peter's Pinewood Derby car ready for the big race.

Since he's a Weeblo II, this would be his last year to compete.  They worked furiously and got it ready in time.

Saturday afternoon was the big event and well, it was a bust.  Peter's car came in 4th in his den and was not fast enough to qualify for the Grand Finals.  But, you know what?  That's okay.

They had a good time working on the car and as always, I feel like Peter learned some good lessons:  work ethic, good sportsmanship, and finding the good in a not-so-good day. 

And besides, we are still riding high from his Pack Championship from two years ago!  And as Dan told him, 5 race cars and 1 Grand Championship isn't all that bad!  (Although I think Peter still believes that 5 race cars should equal 5 Grand Championships!)

The boys with their car.

Their feelings about the car's performance!


Putting the car on the track for one of the heats.

Watching it go!

It's in the thick of things!

And proof that he did at least win one heat!

Monday, February 10, 2014

Tour of the NICU. And realizing that I have no answers. Luckily that won't matter.

When we met with the neonatologist last week, she suggested that we take a tour of the NICU at Forsyth Hospital where I will be delivering Rebecca.

She set up the appointment and luckily, we were able to do it this weekend so Dan didn't have to miss any more work.   I know he is starting to feel the pressure of having missed so many days to be with his mom and all the time away due to  the ultrasounds and echocardiograms he goes on with me and all the days he is potentially going to miss after her delivery. But, I also know, he wouldn't change a thing. I just continue to pray that his work his understanding. 

The NICU was very clean and homey and peaceful.  I'm not sure what I was expecting but it looked like a very nice NICU.

We toured both levels.  Level one for the bigger babies and level two for the smaller babies.  And y'all, there were babies every where.  I could not believe how many tiny little babies there were.  But what struck me as odd was that for all the babies in both levels (probably at least 45) there were only two sets of parents there.

I assume it is because these babies have been there for months (or will be there for months) and parents can't be expected to be in the NICU for days on end without a break.  And most likely, most of these babies will ultimately be discharged and sent home to live a long and happy life with their families.

But in my mind, what I'm envisioning with Rebecca is one of us (or some family member) being with her around the clock.  I don't know if that's realistic but in my heart I feel like our time with her will be numbered in days not weeks or months and I don't want her to pass alone.  

I am praying that she is able to stay in the NICU at Forsyth because if she's in the NICU at Brenner's that means she is there because she needs surgery.  (They don't do pediatric surgeries at Forsyth and they don't deliver babies at Baptist where Brenner's is located.)  And if she doesn't need surgery then there is a chance that we might get to bring her home for a bit.

The doctors keep asking us how we see our time with Rebecca or what our vision of our best possible outcome for her is. And I know they are doing this to try to get a feel for what we want to happen with her after her delivery.

What horrible questions to have to answer.  My best possible outcome is that she be born perfectly healthy.  They always look a little sad for us when we say that.

But if that's not what's going to happen, I don't really have an answer.

Is it better for her to be stillborn so that she doesn't have to suffer?  Is it better that she live a few months and then pass away peacefully in the night?  Is it better that she lives a few days, just long enough for each of us to get to hold her and love on her? 

At different points in time I have thought that each of these sound like a decent answer and then conversely, the most horrible answer possible.

In the end, I know what I answer won't matter.

God has a plan for Rebecca.  It is a beautiful and wonderful plan for her.  Far better than anything I could ever imagine or dream for her.  It's not my plan but His plan.

And that makes it the perfect plan. 

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
_____
 For you created my inmost being;
    you knit me together in my mother’s womb. 
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
You saw me before I was born.
   
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be. - Psalm 139:13-16

Sunday, February 9, 2014

Belly Shot and What I Wore Sunday

I am feeling really large lately and not particularly in the mood for belly shots, but in order to give Rebecca at least the hope of a baby album with some pictures of me with a giant belly just like her brother and sister have, I pushed on and well, what you see is what you get. In all it's largesse.

And I'm at the point now where my facial features (ie cheek bones, eye sockets, nose) all cease to exist and become just one giant round flesh-colored ball.

 Week 30, Day 6




And since it's Sunday, I figured I might as well link up to What I Wore.  If case anyone else wants to look like a very large pregnant woman, here are the outfit details:

Shirt:  Old Navy Maternity
Jeans: Motherhood Maternity
Boots: Target

And now, I think I'm going to roll on outta here.  Get it?  Roll?  Like a giant ball?!

Thursday, February 6, 2014

That face! And an update.

We had another ultrasound yesterday immediately followed by a meeting with the neonatologist.  But before I get to that, look at this beautiful face.

It's a little blurry (they did not give me a CD with the images on it like they normally do so this is a scan of the printout)  but still, isn't she gorgeous? 

Rebecca does not like ultrasounds or echocardiograms and likes to move around a lot when they are being performed.  But luckily the technician was still able to capture this image of her face.

Now...the nitty gritty....

Rebecca weighed in at 2 pounds, 9 ounces.  That puts her in the 20th percentile for babies in their 30th week of gestation.  So she's still small.

And even though they could see a stomach bubble, just like last time it was empty.  Which leads them to believe that there is an esophageal atresia (which is an esophagus that ends in a blind pouch instead of connecting to the stomach) or a blockage of some sort in the esophagus.  They will not be able to confirm this until delivery.

Her waist is also measuring small which is another indicator that she isn't taking in any fluids which is another indicator of the esophageal atresia.

And there is more amniotic fluid surrounding Rebecca than there should be, which is yet again, another indicator of the esophageal atresia.

After the ultrasound, we met with the neonatologist.  She was a very kind doctor who was letting us know our options for treatment for Rebecca on the day of delivery.  She stressed that they would follow our instructions completely and do as little for her as we wanted or as much as we wanted in the way of treatment.

It's now up to us to decide what to do.  If she is infact born with Trisomy 18 (which the doctors are 99.9% sure of at this point) do we do nothing and let her die naturally or do we do everything medically possible to keep her alive for as long as possible?

These are hard decisions to have to make as a parent.

On the one hand, you want to give your child a fighting chance.  But on the other hand, you don't want to put her through any more suffering than necessary.

Yesterday we decided that we fall somewhere in the middle right of the spectrum of do nothing at all to do everything medically possible.

And that means as of now (and we can change our minds at anytime) the following will happen on the day of her delivery:

  • A priest will be in the delivery room to baptize her immediately following delivery.
  • She will be given oxygen if she needs it.
  • If she is struggling to breath and the doctors think that she has more than a few minutes to live, they will insert a breathing tube after checking with us first.  This will be a little uncomfortable for her, but if it gives us hours or days with her, we consider it to be worth it.  Of course, inserting a breathing tube could also mean that at some point we have to make the decision to remove it.
  • After she is cleaned up, she will be put briefly on my chest so that I can "hold" her while they are completing the C-Section.
  • If it looks like she doesn't have much time, Dan will be allowed to hold her until she passes. If it looks like she's got a fighting chance, she will be taken to the NICU.
  • Blood will be drawn to test her chromosomes to determine with 100% certainty that she has T18.
  • A tube will be put down her esophagus to determine if she has EA.
  • And here's where it gets real tricky.  If she has EA, and we want to treat it, she will be sent to Brenner Children's Hospital while I will have to remain at Forsyth while I recover from my C-Section. Even though sending her to Brenner's while I'm stuck at Forsyth is going to be so hard, if it seems like she's got any chance at all, we will most likely do this.  Otherwise, not only will she not be able to eat, she will most likely choke on fluids from her mouth and nose.  If we chose to do this, she will be taken to Brenner's within a couple of hours.
It was a lot to have to think about and deal with in one meeting but we were assured that we could change our minds at any point and they would do whatever we wanted them to do. 

We are going to set up a meeting with a pediatric surgeon to discuss the procedure to repair the EA to make sure we understand what is involved and the implications for Rebecca.

I have been struggling with what to pray for and about.  Of course, I am still praying for a complete and total miracle and that Rebecca be born perfectly healthy.

But at the same time I am a realist, so I also have a second prayer that if she is born with T18, that at least she be born without the esophageal atresia (which I believe would also be a miracle) so that we don't have to make the decision of whether or not to do the surgery which would mean moving her to Brenner's. 

And I continue to pray that Dan and I will have wisdom to make the right decisions for her and that we are able to have peace.

Wednesday, February 5, 2014

Phone dump.

Here are a few pictures from our phones that we took while we were in Massachusetts.

We took the kids to Norumbega Tower. It is a stone tower that was erected by Eben Norton Horsford in 1889 to mark the supposed location of Fort Norumbega, a Norse fort and city. The gate at the bottom of the steps was chained but that didn't stop the kids and Dan from squeezing through and going to the top.  It did however stop me and Rebecca.  I  don't really squeeze into anything (other than my pants!) at this point.



We dug some old skates and hockey sticks out of the attic and headed to the pond Dan and his family used to skate on when they were kids.  It's just right across the street and through the woods.



And we couldn't be on Cape Cod without checking to see if Lewis Bay was frozen.  And it was!



The kids were excited when the pilot told them they could sit in the cockpit after the flight!




And one of my favorite photos:
Sarah made this tiny snowman.  The scarf is dryer lint.  The buttons and smile are bark (and a washer). The eyes are leaves and the nose and arms are tiny twigs.  And she said he was a French snowman since he was wearing a tiny acorn beret.  She named him Dave but later changed his name to Jerry. 

Monday, February 3, 2014

Normal.

My parents and I picked the kids up from school early on Tuesday so we could head to the airport.  The school had already announced they were going to close at 1:00 due to the snow storm that was on it's way.

When we arrived at the airport in Greensboro, I was shocked to learn that our flight to Charlotte was cancelled.  I guess the snow hit Charlotte first and was moving north towards us but in my packing frenzy I wasn't paying attention to the fact that snow would mean airport delays.

Luckily, we were quickly rebooked through Philadelphia and from there we went to Boston. We got to the gate and realized that the flight to Philadelphia that was supposed to take off an hour before our flight was still sitting at the gate.  They rebooked us onto that flight and we luckily made it out without any furture delays.  All in all we ended up in Boston only two hours later than we should have.

It was all fairly smooth sailing considering all the potential problems and as we were taking off from Greensboro, the kids were excited to see all the tiny powdery snowflakes swirling to the ground.

The kids have only flown once before so they were thrilled to be flying again. Sarah was a little nervous during the takeoffs but other than that, it was pure excitement for them. And they were champs trudging through the Philadelphia airport trying to find our gate which got switched between the time we got off the plane and read the departures board and got something to eat and double checked the departures board again.

The excitement for me came when I got to see Dan.  Boy, did I miss him.  I'm used to him travelling for work and being gone for a week at a time but this time felt different.  I guess just the uncertainty of the trip and how long he was going to be gone and knowing that ultimately it was all going to end in a funeral left me a little more unnerved than I normally would be.

The wake, funeral, and burial were all lovely.  I think Dan's mom would have been pleased by everyone that was able to attend and how nice each service was.

One of her brothers is a priest and his homily was beautiful.  In fact, all of his homilies are so well thought out and well delivered that I wish I could hear him every week.  There were 6 priests (one of them a Bishop) in attendance and I think that would have made her very happy.  Although, knowing her, she would have wondered what all the fuss was about!

I'm glad Dan was able to spend the week before her death with her and I'm glad the kids and I were able to make it up there as well.  (I was a little nervous that the doctor wasn't going to let me fly, but apparently that's a little myth that has been perpetuated through television sitcoms.  At least that's where I've always seen pregnant women not being allowed to fly!) 

And now we are back home.  The normal schedule for the week is underway and music lessons, basketball practices, make-up tests and homework, regular tests and homework, laundry, grocery shopping, and more laundry all await.

But, I don't mind at all.  Because that sounds like a normal week.

And normal is pretty good.