a plan

Friday we had our second appointment with the specialist and were able to ask tons of questions.  Several of the answers were we won't know exactly until he's born, a few more were now directed to the pediatric surgeon we have been referred to and a few of them we even got answers to.

We did find out that our boy is not showing any signs of a chromosomal abnormality at this point.  Our decision was to do the blood test and not a full amnio so we don't have a complete work up, but everything they were able to test for came back negative.  We were so thankful that the waiting period was over and to get that news!

They also did another sonogram, which they will do at every appointment from here on out.  After our next appointment it looks like we will meet with the specialist weekly. The sonogram showed exactly what we had seen previously, severe ascites and no signs of a large intestine.

The plan for now is to continue with the regular observation of him.  They are looking for any signs of distress, like the fluid growing or spreading to other areas (heart/lungs/brain) or any sign of chemical distress to his other organs that the fluid might cause. I will continue regular care with the ob also.  Glucose test is up next! We will be meeting soon with a maternal care coordinator at the hospital who handles high risk cases and the pediatric surgeon.  They should be able to answer a  few more questions for us.

This road ahead is long and very uncertain.  There are many things that we simply won't know until they do or don't happen.  Out goal is to get the information that we can and continuing to trust and have faith with all the unknowns.

We are praying against any signs of distress and that I would be able to carry him until he is full term.  We are praying for peace to continue to wash over our family. And always for a miracle!

 

 

waiting & learning

these past two weeks have been full of waiting.

it's a roller coaster really.

so much hope in not yet knowing. nose dives that absolutely take your breath away.

but i am learning.

as mother teresa said "...in the absence of clarity i have learned to trust."

there is no clarity today.  there might not ever be.
but there is trust. there is hope.

trust in my Creator
that makes no mistakes.
that goes before me and stands behind.
that loves all of my boys infinitely more than i ever will.

learning that if i wallow in fear and despair i will miss the joy that He has for me today. 

there is still so, so much joy.

we have another appointment friday morning. prayers for peace despite any news it might bring.

When Everything Changes

So I obviously fell hard off the blogging wagon since my last post was over a year ago, titled Part 1 and the boys had just turned 3 and 1. Oops!

But here we are today, one week after everything changed and I wanted a way to journal the weeks and days ahead. I probably won't ever get around to part 2 so lets just start fresh here.

You hear about this type of day, maybe you've even had one, a day that seems like everything you knew or thought when you woke up is different by the time you hit the bed that night.  Last Thursday was that day for us.  We were scheduled for our 20 week sonogram to see our baby, our third, due in December.  For the first time we were going to find out if this little fig was boy or girl before his/her actual birthday.  I was nervous and excited to find out more about this little babe while I was still pregnant.

It wasn't long before our sweet sonographer said "that's not supposed to be there."  She proceeded to tell us that our baby had fluid building in his abdomen, a condition called ascities. She remained upbeat as she looked over the rest of his body, captured sweet pictures of his hands and feet, and told us that we would be having another baby boy.  She also mentioned that our ob would want to see us today and that they would refer us to a specialist to find out exactly why the fluid was building.

After quickly meeting with my ob for a counseling/information session she sent us immediately to the specialists office.  That's when it hit us that this was serious.  We were supposed to be at our specialist appointment in less than an hour and were hearing things like "this doesn't mean you are going to lose the baby" and "I haven't seen this in a patient in over 5 years".

It a state of confusion with hot tears in our eyes we head across town to meet the specialist and find out exactly what this all meant.  A long wait and another two long sonograms later the doctor started breaking it all down for us.

While ascities can be caused by numerous things, it seemed that our son was lacking either all or part of his large intestines and his small intestines was measuring small too.  She very briefly went into the severity of not having a large intestine but said that we probably wouldn't know exactly the condition of his GI tract until he is born.  We decided to do some blood/ chromosome testing that we hadn't done in the beginning and got set up for appointments to keep monitoring his condition in two week increments.

We left that appointment in tears and just trying to process everything we had heard.  Trying to process how hours earlier we were so excited to find out if we were having a boy or a girl and now we were weeping for the health of our baby.  Over the next few hours and certainly over the days since we have come up with a laundry list of more questions that hopefully we will be able to ask at our two appointments next week.

Where I stand now is in a roller coaster of emotion but solidly grounded in my faith.  We have already seen the Lord's hand at work in this and I pray that would continue.  We are praying for complete healing. This boy is already a miracle and we are believing that The Lord can heal him completely. We are praying for wisdom in the weeks to come, in all of the decisions that will have to be made and for the doctors as they guide our care. We are praying that as the test results come back that he would have no chromosomal abnormalities that would complicate his condition. We are praying that our son's life, no matter what it looks like, would bring glory to His name. Our boy is fearfully and wonderfully made.

If you would pray with us we would be so grateful.  I have felt a strong sense of peace in all of this news despite the sometimes seemingly unending tears and I pray that this would continue in all of the uncertainty of the weeks ahead. It is an enormous comfort to me that despite any news that the doctors might give we have only one place to turn for ultimate healing, comfort and lasting joy.

3 and 1 - part one

Both of the boys had birthdays recently in the last 3 months. Up until now these two precious days have been undocumented.

We will start with Nolan's since it was in April. For his birthday we had a surprise party.  It ended up being a sweet gathering of a few very dear friends and family.  We played in the backyard, munched on sandwiches and cake and celebrate Nolan's beautiful first year.    

And yes, when he woke up from his nap he was completely surprised!

One!

A little help blowing out the candle

At one, Nolan had a few words like Mama, Dada, Bubba, poop and ball.  All of which he uses sparingly except ball.  He wasn't walking quite yet, but started just a few weeks later on my birthday, May 19th. He had just had tube put in his ears and was just starting to sleep through the night again. 

Nolan, I have failed and failed at documenting your first lightning fast year, but I know that you know I love you like crazy.  You are my sweet Smush! You are so silly and so set in your ways.  You absolutely love your momma best of all and although that presents challenges its perfectly adorable too.  You love to give raspberries and have a laugh that fills my soul. When you laugh with your brother I can hardly handle it. You are a great imitator and love to copy movement, including swinging a golf club and sweeping the floor.  Pretty funny tasks since you were doing these things before you could walk.  You are my physical boy, climbing, diving, dumping with little fear or hesitation.  You have kept me awake so many nights, but those hours alone with you in a dark and quiet house have taught me more than I could have imagined. I love you my sweet boy, my light, my Smush!  

{SMILE}

Have you heard this song by Uncle Kraker?  Of course you have.

Since having G, I can hardly hear it without tearing up.  If I am singing it to the boys the lump in my throat comes about 3 notes in.

Nolan even has a sign in his room with the lyrics.  These boys absolutely make me smile.  Hundreds of smiles each day. But this absolutely made my heart explode!

He was supposed to be napping, but was standing on his bed singing Smile instead.  I tried to video the monitor, but as soon as I got the video ready he slipped out of his room to come find me and sing.   Then I had to ask him to sing it again.

 

He really is better than the best.

The Sweetest Day

The morning was spent snuggling Nolan for an hour before G would wake. We snacked on Cheerios and enjoyed some sweet time with our little guy.

An hour later G was up and the day took off like most Saturdays.  Eggs for breakfast, daddy mowing the lawn while the boys and I played inside and out.  When daddy was done, he entertained the boys while I finished this massive project I decided to take on yesterday. I'm blaming it on Jen Hatmaker.

Yes, I went through the boys closets and through all of the storage boxes I had already created in order to purge and reorganize now that a couple of more stages have passed.

Funny thing is that I hold no personal attachment to my clothes or almost all of my things.  I LOVE to purge and clean out and reorganize.  But when it comes to the boys clothes the attachment is strong.  For most every outfit I have a memory.
Bringing them home.
The picture with the sideways smile.
Getting stuck crawling backwards.
Learning to walk.
Easter Sunday.
I know what they were wearing on these occasions and so many more.  Just looking at their outfits its like I can push play on those little moments that just flew by.  So for me making that pile into those bins was a sweet, sweet walk down memory lane.

Then it was off to church for a convicting sermon and heart stirring praise and worship. Nolan even made it through the entire service in the nursery for only the second time ever.  G was fired up when we picked him up telling us all out his heart and that Jesus came to save sinners.  He even wanted to listen to this on the way home.

After dinner this happened...

And I couldn't have loved it more. It was a full on concert with booty shaking, screaming into the mic, an encore and all.

Soon after we tucked the boys and settled on the couch to watch the Ranger game.  But an hour or so later both boys were up again.  This is extremely rare. Neither one typically wakes back up, but I am pretty sure that one woke the other so we had both boys back on the couch watching the game at 9:30. Very shortly after I could tell Nolan was ready to be back in bed, so we snuck off to his room and I rocked him back to sleep.  It has been months and months since I rocked him to sleep.  He grabbed on to my shirt and fell almost immediately into a deep sleep.  I had forgotten how he used to always hold on to my shirt when he feel asleep.  It was bliss.  After a day full of sweet baby memories he gave me another one.

Thank you Lord for this sweet family and these three boys I get to share it with. 

Swim, Swim

We have official donned our scales for the season.  This family has been swimming up to 7 times a week the past two weeks. Most of that is due to G's swim lessons that were 4 days a week.

He absolutely loves to be in the water and has started asking to go to the pool in the morning and again after nap.  Some days that is the schedule, it's too hot to play outside otherwise.

This year G moved up to the 3-5 year old class, even though he isn't quite 3 yet.  They allowed it and I thought it would be more appropriate for his skill level.  On the first day I was a little nervous because all the other kids in his class were at least 4 and there were several 5 year olds.  Those kids were a foot taller than G!  But as usual, there was nothing to worry about.  He held his own and was able to keep up and do everything right along with the class.
He loved his teachers Miss Samantha and Miss Valerie. He really took to Samantha.  She is in the pictures with him. 

His favorite new skill is blowing bubbles while going completely underwater.  This means he can dive for toys, which he could do for hours.  He has also learned to put kicking, scooping and blowing bubbles together all at the same time.  To say he is swimming is a bit of a reach but he is putting the moves together.  I am excited to see where he is by the end of the summer. 

I don't have any pictures of the rest of us in the water, since I am in the water where the camera can't go. But here are a couple of Nolan enjoying a break from the water and watching brother swim.

 

We have also started a summer tradition of swimming at the poor nearby every Tuesday night.  Family Fun Night! Picnic dinner and a short and sweet splash before we tuck in pruney babies is the best!