So, forget everything that I wrote this morning!!

Maybe I'm Bipolar?!?

Or... maybe I'm a Mom ready to give birth to a really sick kid?

Or "C"... both?!?

Technology is great, but sometimes I wish that I hadn't read up on Pseudo-Prune Belly Syndrome online.

And sometimes I wish that I hadn't looked it up again, and again, and again, and again...

Let's call it PPBS, because it sounds a lot less scary!!

I KNOW that things have looked better and better with Jackson on the ultrasounds.

But when I think and dwell and dwell and think and think some more and then dwell al ittle more...

on everything that COULD go wrong, I drive myself insane!!

*There's the huge risk that he will constantly have UTIs and need to be on antibiotics his whole life (with the usual GI side effects).

*There's the obvious need that to have his testicles descended via surgery- which places him at a much higher risk of cancer and infertility!!  And that's not including the operation risks themselves, or the high percentages of tesitlces that then die b/c of lack of blood flow (I'm telling you... too much research!)
*There's the surgery risks with closing his Urachus

*There's the lack of abd muscles and/or abd muscle strength, leading to increased and thickened respiratory secretions that are harder to clear and the increase in respiratory infections. 
*The same lack of muscles can cause problems with bowel movements... constipation and bowel obstructions are quite common!

*Do you know the percentage of these kids that eventually have kidney damage and need dialysis and/or kidney transplantation... EVEN if their kidneys look good on US before birth (something that I just so happened to learn via the internet a few minutes ago!!)  I know that their "studies" are skewed, but the numbers are still terrifying,

Now I'm doubting everything that I've done the past few days...

opening diapers and diaper pails and wipes and buying clothes and setting up bassinets.

Have I set us up for more disappointment and heartbreak?!?

I found a site tonight for families new to PPBS...

why on the very first page do I need to read the words 

"20% of patients are stillborn, 30% die of renal failure or urosepsis within the first two years of life"

Thank you   http://www.prunebelly.org/   for your wonderful optimism!!!

How can my baby be kicking inside of me as we speak, smiling to us on his ultrasound just yesterday and then just... nothing,,, stillbirth...

Excuse me while I go vomit!!!

I found a poem on a women's blog that really spoke to me...

Her son died 3 hours after birth and she knew that he would not survive, so we are NOT in the same boat, but we are both Mom's who are (were) pregnant with babies we love...

I hold the knowing eyes of a mother who chooses to carry to term, a baby with a condition that is now incompatible with life.

  I hold the unknowing eyes of a mother who believes in miracles, but is not sure if she will be granted one.

I hate my eyes.

And I hate working by myself all night long with nothing to do but research more and more.
I don't do it to find more terrible news,
I do it to find more support, more information, better data,
and to be more prepared.

Tonight I found a photographer that volunteers at Geissinger Med Center...
I found her through the site http://www.nowilaymedowntosleep.org/home/
I sent her an email just now and am hoping to hear back from her.
I had wanted to fly Becca here to spend the time with us, but Jason felt that I was being too pessimistic and that flights were way too expensive.  So... I'm hoping this lady will be available... IF needed.

It is now 3:43 am and I can not take anymore...
I will turn off this computer and enjoy the last 2 hours of work alone, in the dark, with quiet...
 and pray for peace!

But only after one very loud cmputer scream:
AAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRGGGGGGGGGGG!!!!
WWWWHHHHYYYY?!?!?!?!?!?!?!??!?!?!?!?

Update on Jackson

I feel like I have not dairied any updates on Jackson lately,

but it is for good reason...

There have been no changes and his body is growing into all of the things that have been so huge for the past 14 weeks!!  Yeah!!

His kidneys are still appx 5mm big (which is average size for a 32 week old baby) and they are not as full of fluid, as far as we can tell.  His ureters are still big and bulging and snake-like but have not increased in size.  His bladder remains to be a snowman-shape, but has never filled with urine so much that we even considered re-draining him. 
Even my polyhydramnios has been undiagnosed... I still have norm-high levels of fluid but it has not been over the 25cm mark except for the one measurement a few weeks back.  AND... technically I do not have Gestationa; Diabetes... though I failed to preliminary 1 hour tests, I technically passed teh 3 hour test b/c one of my readings was over 200 but the next was 39... so they have said that I am "Glucose Sensitive".  Never heard of it, totally believe, and love the diagnosis much more than diabetic!!!

Jackson moves around like a crazy boy and we've seen his belly muscles helping him practice-breathe during our weekly Biophysical Profiles... Great news since we weren't totally sure that he even had abd muscles!!!!
I have Braxton-Hicks every time I try to do anything remotely active, like get off the couch to pee!!  They stop when I lay back down though, so I'm told it is totally normal. 

So, we have found him a nursery set that should be here in a few weeks, we set up his playpen/bassinet in the living room and stocked it with diapers, wipes, powders, creams, and burp pads... even his own "pillow pet" do to decorate the pen!!!  Jaylee and I went shopping for a bunch of outfits for him, and Jenni is insistant on finding him an Eagles outfit... not sure how Jason will feel about that!!! 

Next week (2/2) we meet with the Cardiologist one more time to make sure that the teeny-tiny amt of fluid that was still around his heart is gone (even if it's not though, the Cardiologist was not worried about it 11 weeks ago).  We also do a full thing of measurements to see exactly how big everything is on him - then we should be able to schedule our amnio and c-section.  Dr Smith is thinking week 37... we're hoping for Feb 28th, so that he, Jaylee and I will all be 28th day bdays. 

The girls are very excited and have been much more cuddly the past few weeks than usual...

they love to just pick up my shirt, yell into him, and shake my belly around!!

They really love to see him rolling around in there too -

I don't remember them being so active!

Jenni broke down in bed the other night though...

I could hear her crying softly...

She wouldn't tell me what was wrong but eventually fessed up that she is not excited for Jackson at all because she is "too worried about him" - REALLY?!?  My 5 year old?  Then she asked a TON of what-ifs.  I hope that I answered them all the right way.  This really surprised me b/c Jason and I have not said anything that we thought would worry them in the past few weeks. We've kept the tone of the house very optimistic.  Jason wasn't surprised at all by it though... he realizes how mature they are, even if I keep being blown away by it!

So... No news is good news!!!

(17 paragraphs later!!)

In all honesty, It's really weird writing down all of the good news!!
Especially since i've gone ahead of my instincts and have bought stuff for him and set stuff up -
My plan was to wait until he actually came home with us.
I know in my brain that he is still sick and will still need a lot of medical interevention, but the lack of new-bad-news has us all feeling a little too comoftable, if that is possible? 
Don't get me wrong, some days I still lay and cry and dwell on all of the terrible what-ifs but for the most part, we are all very confidant that the Lord has allowed him to heal.
Not sure what we did to deserve it, but I have come to learn that gut-instincts are more than just gas!!
(Well, most of the time... ;)  hehe)

Jennibelle's Staples

Today Jennibelle had her 5 staples removed from the back of her head.  They were in for 6 days and her 1.5 inch laceration has healed nicely.  She handled the whole situation like a BIG, BRAVE girl! 

Boy, was I proud!!!! 

She and Jaylee spent an entire snow day playing well at home until 4pm when they were playing "school" in Jaylee's room.  No one is too sure what happened... apparently, Jenni just fell backwards, striking the right side of her head on Jaylee's bed.  Jaylee was really nice about it too... she didn't want JB to feak out, so she threw her pillow on top of the blood puddle on the ground so JB couldn't see it!!!  Then she sent JB down to me... I heard her crying from upstairs but it was NOT her "Real Cry" so Jason and I rolled our eyes and told her to stop whining... until she moved her hand and I could see the blood running down her arm... whoops!!!

Luckily, her Pediatrician's office is now 2 minutes away so they agreed to see us for our $15 copay, rather than paying for an ER visit.  They applied LET to her wound for 20 minutes but then stapled it closed and I could tell that it really hurt her, but she did NOT move her head - thata girl!!!  And 6 days later... the whole ordeal is over! 

GO Jenni!!!!

With staples...

And now without...

Today is a good day at our house...

the snow is on the ground and we are all safe and warm inside and the kids are running around a 3,000 sq ft house like they're on a playground.

Life is good.

*Here's pix of the girls with the fresh snow the other day:

*I think that I even found a reasonable Nursery Furniture set for Jackson so I am feeling very optimistic and enjoying the feeling of it!!

He has been a kicker and flipper lately - the girls think that it is so cool to see him flip-flopping!

*The girls started school for the second time this year...

Jaylee in 2nd grade

Mrs Riegel

Kissel Hill Elem

She tested into the highest Math and Reading programs and is quite proud of herself!

She made friends the first day and is excited to have them over to play.

Jennibelle is in Kindergarten

Mrs Bowser

PM Kindergarten (only 12-2:30)

Kissel Hill Elem

She loves that she gets to choose her cubby, seat, and job each day.

Imagine that... a kids getting to make a decision!!! Sweet!
(Notice the head tilt is back in action!!)

*We are pretty much moved into the new house and unpacked.

Pretty much...

We still must finish Jaylee's room, which requires painting a chest of drawers and getting up the 28 stairs.

And, of course, we have to do Jackson's room -

since I change my mind each day about if we're going to set up a nursery just yet or not.

Once Spring hits, we'll have to organize the garage and beauty salon and figure that all out.

*So far, the house has been great... only 1 spider and no snakes.

Terminex comes on Monday and the owner laughed when Jason told him we would be having Terminex come.  He swears that no one has ever had problems with snakes, but yest I saw him setting up large traps in the barn at the end of the driveway - I hope no one has had problems with skunks or beavers or racoons either!!!

* We cont. our weekly trips to Geisinger for Biophysical Profiles (a little more in depth non-stress test since the baby is twice as large as he should be and moves in patterns, rather than all the time).  I get to meet the new OB group this week and will officially be their patient from here on out.  We meet with the Cardiologist one of these next few weeks.  And in SIX WEEKS... ta da....
Makes my heart go a little tachy, just thinking about it!!!

Overwhelmed

Isn't it absolutely amazing that a moment can change your life... forever?

I knew my baby is sick. I knew we would be in the NICU. I knew there would be monitors, bells and whistles.   Yet...

When we toured the NICU yesturday, reality crashed on me...

crushed me...

suffocated me...

robbed me of my optimism.

The staff at Geissinger was fantastic... very personable and totally open to our questions.  And, in a weird way, they really made me feel like they already cared about little Jackson.  The air in the room was optimistic and we kept hearing about how we should be excited and celebrating his birth.

We were given information... TONS of information.  Information on things that never crossed my mind - Medical Assistance Insuarnce for him, Social Security Disabilitiy benefits for him, using the Ronald McDonald House, Home Health Nursing. 

YIKES... this is my life!!!

Then we were told the saddest news that I had heard all day... all week... all month!!!

The hosiptal is on RSV lockdown...

NO ONE UNDER THE AGE OF 12 IS ALLOWED ON ANY OF THE FLOORS!!!!

My girls... their brother... my family... we can't be together for weeks!!! 

My heart broke, my eyes swelled, my happiness disappeared.

I know it's for Jackson's good and for the good of all of the patients... but how can they have a brother and not be allowed to meet him?!?

I shared my concerns with Mindy, our social worker who then took our concerns to the head of the NICU:

Nicole lost her baby at birth, and Bella has had such a hard time dealling with the fact that she never got to hold Max, or see him, or feel him.  I did not want this to happen to my children...

if we were in that situation.

"I'm the head of the department and if anyone can break a rules, it's me" was Dr Everett's response. 

This makes me feel better... a little anyway.

So, here I am today, typing my thoughts away.

We have been without tv, internet and phone for 10 days while we did the whole moving thing.

I think that I actually went through technology withdrawel!!

Good thing I worked extra days and can use their TV and internet!!!

BTW... Jackson is twice as big as he's suppose to be at this point...

"In the 99th percentile for weight" is what they told us...

He is bigger than 99% of the other babies his age!!!

Holy big baby!

He should be around 2 lbs, he's 4lbs 2 ozs.

So... weekly Nonstress Tests until 37 weeks and then an amniocentesis to see if we can deliver him that day.

THAT'S ONLY 7 WEEKS AWAY!!!!!!!!

I can't wait to see, meet and hug him.  At the same time I never want to see him, or meet him, or hold him, or fall madly in love with him...

He is so much safer in my belly and I can't bear the thought of all that he's going to go through.

My poor sweet baby boy!!!

My poor girls who are enxioulsy waiting to meet him!

My poor husband who is so stoic and optimistic!

Oh, Poor Me!!!