Darlene...

      Thank you fo being such a good friend all of these years!!!!!!!!!!!!!!!!!!!

                                                                                       Jenn

Some funny things

So...

some funny things happened today that I thought I would document...

1.  I am AGAIN addictive to ice chips while pregnant!!

While driving today, I had an ice chip that was just too darn big, so I threw it out of my window...

the truck behind me was FURIOUS!!!!  They must have thought I was littering...

they kept beeping at me and "yelling" at me from in their truck, making the motions of throwing things out the window... Jason and I were blewn away by this...

maybe next time I'll remember NOT to jump to conclusions.

But... even if I was littering... Really?!?!?!?!?!

2.  Everyday I say to Jenni (in one way or anotherI) that I love her and she always points out that I tell her this every day...

Todays conversation:

Mama: Have I told you today that I love you, Jenni?

Jenni: Yeah, but one day you'll be dead and can't say it anymore, so it's OK!

3.  Jaylee was complaining of ear and throat pain ALL day Sat so she was not allowed to sleep at a friend's house.

She NEVER complained once, yesterday (Sun) so we let her spend the night that night..

She came home around dinner today (Mon) and the very first words out of her mouth were about how much her ear and throat hurt!!!

Jason and I had actually taken bets on how long it would take her to start complaining once she got home.

Maybe I'll have to bribe all sick kids with sleep overs?!?

4.  Jenni LOVES to talk on the phone with her BFF Serenity (Jenni is only 5)...

she paces around the house while they have their 30 min conversations.

This morning I heard her exclaiming "I know, she was out of control at Chuck E Cheese... it was soooo embarrassing... you read my mind, GIRL!!!"

What the heck?!?!?

AND... in Not-So-Funny News,

Jennibelle was awarded the STUDENT OF THE  MONTH award for Novmeber 2010.

She also was awarded a 'Star Student Award", but neither girl could explain it to me..

oh well...

CONGRATS JENNIBELLE!!!!

I think I'll do a post on here one day with some of her writings and drawings and a picture of her award...

One day...

CHOPS update

I feel like I need to update this "diary" of Jackson's journey everytime we see a Dr b/c there is always something new, yet never anything new.  We spent all day yesterday (11/18) at Children's Hospital of Philadelphia.  We had an MRI, US, ECHO and met with the MFM there who is also a fetal surgeon. 

My MRI outfit...

It was a long day and neither Jason nor I slept well the 2 nights prior. (Aparently nervousness makes me snore!!)  We sat and talked with the Dr for an hour or so... it was SOOOOOO much information, yet I feel like I didn't learn anything!  When we left, Jason smiled and exclaimed "Well, that was good news!" JUST as I was bursting into tears about all of the terrible things they had told  us!!!  We still can't decide who is more confused... him or I!!!!  I think this is one of the things that makes us such a good team!!

They gave us the diagnosis "Pseudo Prune Belly Syndrome" and he explained that they are starting to refer to it as "Triad Syndrome".  Here's the dummy version...

we don't know what caused what...  whether his stretched out bladder damaged his growing abd muscles or vice versa.  We know that as a boy develops, his urethra begins as a solid tube and hollows out... PROBABLY what happened is that his did not fully hollow out in the middle, causing the urine to back up and his baldder to be HUGE.  His bladder muscles are damaged, leaving him with a "snowman" shaped bladder, rather than a tight round ball.  His bowels are NOT dilated... what we were seeing on US was actually his ureters!!!!!!  (Normally they are not seen on US).  His are VERY dilated and make a snaking pattern now.  However, he is still making urine, so the kidneys are not damaged beyond hope at this time.   Jackson has a URACHUS...  a thing that is supposed to close up as the baby develops but with all of the presure in his bladder, his must have "reopened" and is connecting his bladder to the outside world... he is peeing out of his abd!!!   He made his own shunt which is saving his life right now!!!!!

I have MANY questions, there are still MANY "what ifs" and " not yets" and "then whats"... we know that he will be sick when he is born, we know that he will require suregeries, we know that he will be delayed physically, we know that he will have problems (if not worse) urinating.  BUT at this point, we know that there is a good chance that he will hang on until 35 weeks and we can deliver him and go one surgery at a time!!!!!!

Again, I've said a whole lot of nothing!!!   There isn't much on the web either b/c I could not find either syndrome anywhere.  I did find Prune Belly Syndrome but it does not all fit him... he is truely one of a kind!!!!

Here's the best articles I found:

Urachus definitio: http://www.medterms.com/script/main/art.asp?articlekey=13997
Urachus MRI pictures: http://courses.md.huji.ac.il/96854_e/pdf/Prenatal%20MRI.pdf  (click on Abd on the left)

Prune Belly: http://www.nursingcenter.com/prodev/ce_article.asp?tid=729510

I'm scared to death

Now I lay me down for tests...

I pray the Lord my soul to bless...

If i should die before I wake...

I pray the Lord my soul to take...

I pray my girls know my love...

And will see them there in heaven above...

I pray Jason makes life more fun...

And pray the Jackson lives as his son...

PLEASE always know how much I love you two little girls!!!!!!!!!!!!!!!!!

NOT Cincinnati

AND...

we are WITHOUT a PLAN...

AGAIN!!!!!

How frustrating!!!!

You'd think that I'd be panicky and worried...

NOPE!!!

Our health insurance decided that it didn't want to pay for me to go to Cinicinnati, even though it had already pre-authroized it and all of our appts and hotels were booked.  They said now that they'll only pay for CHOPS.  (The hospital our first Dr wanted us to go to THREE WEEKS AGO!!!)

Oh well...Philly is sooo much closer!

Jaylee came home from school today b/c her teacher said that she was sad, quiet & tearful.

She told her teacher that she was sad b/c we had to go away again next week to the Drs.

Now, we won't be gone nearly as long!

Everything has seemed to work out for a reason, so we're just gonna go with it...

Cincinatti

On Monday (11/8) we had another US at Geisinger with Dr Smith...

Jackson's bladder had not gotten any larger, his ureters were a little more dilated, he had plenty of amniotic fluid BUT...

now his bowels are showing a lot of dilitation.

Dr Smith was concerned and spent a lot of time using the US machine trying to get the best pictures he could. He explained it could be simple... maybe the large bladder temporarily paralized his bowels and they would work themselves out in time... or, maybe it was not so simple... perhaps my poor baby boy has no rectum.  Talk about one extreme to the other!  He assured us that it was concerning, not totally a surprise (since the urogenitary and bowel systems are so closely related), and that they would continue to just monitor it at this point, since there are no interventions until he is born. 

That, was until Dr Smith called me today, Weds (11/10) out of the blue!

He said that he couldn't stop thinking about our US, he discussed it with his colleagues at Geisinger, and that he had even consulted the Fetal Care Center in Cincinatti again...

Looks like we're off to Cinicinatti tomorrow!!!!

Crushing, Heartbreaking, Nerve-racking, Saddening, Worrisome, Disappointing ---

All feelings I've had this afternoon.

But, I've also had feelings of Reassurance, Peace, and Ease of mind that we are getting a hands-on second opinion.

Aaaaaaaaarrrrrrgggggg!!!!!!!!!!!

And I HATE seeing Jason this upset!!!

After almost 9 years, I have finally found his one weakness...

HELPLESSNESS.

And that makes this all the more heartbreaking!!!!!

I'l be reporting from Cinicinatti next!!!
Never been there... mayeb it'll be the most beautiful city that I never would have gotten to see?!?...
maybe...

Thankful

November is a time to be thankful!

Last year, I wrote a new thing that I was thankful for each morning on FB.

I'm getting a late start this year... it's already November 5th.

So here is my first five and I'll add more each day!!!

I am thankful for...

1. My In Laws who have graciously given of their time, money and time together to help us through these terrifying weeks of the unknown with Jackson.
2. My warm house with this nasty cold, wet, windy weather.
3. My Dad's health, so that at the age of 60, he is still able to work his outages and provde for the family.
4. My relationship with Jason that has blossomed, in our time of trials.
5. My car that has reached 110,000 miles and has never given us any problems.
6. My daughters who have handled our trials with Jackson with maturity, understanding, concern, compassion, prayer and fun!
7. Times when Jaylee and I get to hang out alone and she is truely herself, uninhibited... so much fun!!
8. The great sunny weather we've had every day that we've made this 2 hours trip to Geisinger Medical center... it is in the mts in the middle of nowhere which would be VERY stressful if it were rainy and/or snowy!!!
9. Jennibelle being the most snuggly human on Earth!!!
10. Being able to go buy my first outfit for my SON!!! - Camo pants with a double layered top that says "Little Brother"  BTW... have I said how thankful I am for Jackson?!?
11. All of the veterans I know!!! Poppop, Neil, Dad, Jason, Matt, Kelly Legg... our lives would not be the same without you!!! THANK YOU!
12. Our reliable friends that have been so helpful through all of our recent hospital trips.
13. A Mom who cooks so well and was kind enough to make us dinner!!!
14. That I've gotten my sister Mandy for 30 years... hope to have her for 100 more!!!!!!!!!!!!!!!!!!!!!!
15. A hubby who can be quite helpful around the house, when he is asked!! We had another showing today and I never could have had the place ready without his help!!
16. My friend Nick Pierdomenico . I hope he's having a wonderfully warm & sunny birthday!!!
17. Awesome loud thunderstorms!!!!
18. Awesome medical technology.  Steering our Drs and us in the right directions.
19. A God that we can pray to.
20. Our beautifully decorated Christmas Tree in the Living Room... as if we didn't have enough on our plates, we managed to have a Christmas Party this morning and got our decorating done!!      LOVE MY FAMILY!!!!
21. Both of my girls that are generally well behaved, respect authority, love to have fun, do well in school, seem to be athletic, enjoy some great friendships already, love God, and adore their cousins and brother.  I am truely blessed with them!!!
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    

Halloween

Halloween 2010

What a great night!!!!

Grandma was here to celebrate with us, which made it extra special.

Jennibelle was SO into it... we could barely keep up with her from house to house.

Jaylee was very into helping Morgan.

Cole spent Trick or Treating with Nan because the temp had dropped 20' from the night before.

Here's the SEXY couple...

Apparently, no one makes pregnant halloween outfits!

Luckily I had found this huge clown costume on feecycle.org

Jason had a matching clown costume but flat out refused!!

He was a fun Ghostbuster, using his ray gun to shoot marshmellows at the kids.

Our only family pic... from a far.

Jaylee picked out her Priate outfit.

Jenni was super excited to be Barbie the Musketeer.

The kids are at such a fun age!!!!

Here's the cousins!! 

Jenni sharing her treasures with Grandma and Poppop.

Like usual, Poppop rushed home from an outage to be a part of the kids' holiday.

They sure do love him!!!

Here's Nan and Grandma at our FREEZING dinner!

Here's a pic of all the kids in Nan's neighborhood...

I thought it was a good shot of Jaylee, Jenni and Morgan.

My computer won't let me crop it though!!

Speechless

There is SO much to say, yet I am sick of speaking and I don't know the right words to wrap up all of the emotions flowing through me today.  I just took a 3 hour nap... anyone who knows me knows that this is serious!!!  I was exhausted....

And for good reason...

My poor poor Jennibelle was SO sick yesturday... my heart was aching for her.

And it was all caused by a darn ear infection.  Her ear was so bad that her Dr told us that she wouldn't be surprised if it ruptured yest, but then atleast Jenni would get some relief. 

Her only complaint was severe ear pain... until we were driving to the Drs appt and she decided to add "Constant Vomitting" to her list!! 

5 hours and a Phenergen later, her vomitting was controlled and we could get her antibiotics in.

I have never seen a person quite her shade of green before...

God only gives you what you can handle, b/c this morning she was 100% better and bouncing off of the walls in Jenni fashion.  She got to stay home from school with Grandma for the day while Jason and I headed back to Geisinger.

Grandma is a whole nother story... she has been such a blessing!!  She'll never know her impact on her family the past 2 weeks.  She was supposed to leave Tuesday but decided to extend her stay until this weekend to help us out.  I hope she knows how THANKFUL we are.  And the kids are LOVING every minute of it.  I know that Jason would have "survived" these roller-coaster weeks, but having his Mama here has ment the world to him.

SO... on to to our trips to Geisinger...

I feel like everytime I document our appt, the plans change immensely!!

Monday (11/1) we were told by Erik Smith that Jackson's bladder is appx 1 cm but is not perfectly round., he used the words "floppy" and "pancake", which we could see on the US.  This concerned him b/c he thought that he may have seen some dialtation of his ureters, which we have not been able to see before.  His kidneys appeared unchanged.  His plan of action was to place a stent with the thought of buying time to allow the bladder to shrink back to a small ball and regain some of it's lost elasticity.  Since the surgery comes with significant risks (including a 8-10% risk of rupturing membranes, which induces labor that can not be stopped), he wanted a 2nd opinion.  He spoke with the specialists at The Fetal Center in Cincinatti and sent them all of my files and US pix.  He was pushing for us to head out there to be seen and have the procedure.  Well, wouldn't you know... the Drs reviewed my case as a group and decided that it was best to contiue with my care at Geisinger since they have been doing everything right and since Jackson still has plenty of amniotic fluid (baby pee).  They recommended weekly US to monitor his amniotic fluid levels, another bladder tap to retest his urine (in the next few weeks) and, get this...

they wanted us to meet with a Pediatric Nephrologist to ...  

 Talk About What Happens After He Is Born!!!!!!!!!!!!

Until today, everything has been so centered on his day-to-day survival.  But now there is optimism in our plan of care and we are...

Relieved, Joyful, Thankful, Hopeful, Happy, Excited, and Absolutely Exhausted!!

Today (11/3) we traveled to Geisinger for Jackson's Heart ECHO and to meet the Perinatal Cardiologist, Dr Ahmaad.  Erik Smith was concerned because, though the fluid around his heart HAD diminished a little, it was still there.  Though this was good news, Erik Smith had Dr Ahmaad squeeze us into his full schedule, which showed some urgency that had us just a little nervous.  No need though...

the Cardiologist could NOT find the fluid all around the heart that we had been seeing and that the Drs were worried about.  He did explain a phenomenom called pseudo-effusion, where on a 2D US it appears to show an effusion, but with the more in-depth ECHO with lit-up blood flow pix, the fluid simply was not there.       Unrelated, he did find a minute pocket of fluid on the other side of his heart, but said that is was of no physioloigcal concern.  He did not even plan to meet with us again...  Until cautious Erik Smith asked him to re-eval the pocket of fluid in 10 weeks. 

The we had another US to peek at his baldder... NO CHANGES since Monday.

YEAH!!!!

Of course, in his usual fashion, Mr Jackson was non-cooperative, laying on his belly, so that the Drs could not drain his bladder for testing today.  We return on Monday (11/8) and if all goes well, we will cont our weekly meetings.  Within the next 2 weeks or so, they do want to be able to drain his bladder with a Amnio needle again but only when he's cooperating, there is no urgency at this time. 

Who knows what I'll blog about next time... each time we go to the Drs, plans change.  It's been nothing but good news the past few visits though, so I am trying to mentally prepare myself for a bomb.  It's hard though, when you're married to Jason, who perpetually believes that everything will work out just fine.

And so far, he has been absolutely right...

In the past 15 days, we have crossed off the following conditions that we were originally dealing with:

  Anemia requiring blood transfusions

Kidney damage that would not allow him to survive

Stent surgery to Jackson's bladder

Fluid around his heart, a sign of heart failure

Chromosomal Abnormalities... pointing towards Downs Syndrome

The Lord has been good to us. 

We were talking last night about what we could learn from this, what God wanted us to learn:

*We have grown as a couple, opening up about our feelings and trusting each other so much more.

*We've grown as a family, praying more together, being honest about Jackson's future, learning about anatomy and physiology, asking and answering lots of questions, and loving each other more.

*We have depended on family for prayer, strength and support.  Not sure what we would have done without Grandma here (thanks to Grandpa for letting us steal her)!!  Nan and Poppop showed me love the best way possible... they spent a whold day here cleaning my house, without pestering me with questions - just being here, silently helping so that I wasn't home alone.  My sisters call every day and when I hear them cry, I know how much they love me and my little man. Jason's family has spent countless hours praying for us and fasting.

*We've decided as a couple, that church needs to be more prevelant in our lives.  Jaylee has been asking a lot about being Baptised, saying that she wants to show everyone how much she loves Jesus!

*We've experienced a true miracle.

I'm not even sure where to go from here... just feels good to get everything written down so that next year, when my memory of this is gone, I can sit and relive the miracles!!!

Our US tech was kind enough to do a 4D US for us.

(Don't worry, all the kids at 20 wks old look quite alien-like and the black lines are only shadows.)

Both girls exclaimed how CUTE he was, though we almost expected disgust!!! Whew...

Here's Jackson!!!