The strength that comes with Gideon

On August 4th we left our kids with my parents and took Gideon to Sacred Heart to get his pre-op testing done in preparation for his big horking open heart surgery on the 5th.  They told us to plan for 5-10 days.  I planned for 2 weeks.  The day went smoothly.  The hospital had some deal with the Madison Inn where we only had to pay $10 to stay in a pretty nice hotel that was just next door to the hospital.  I basically took in every minute I had with Gideon.  This is a picture I took of Gideon in the hotel that evening with a special shirt a friend of mine made for him sitting in front of an extremely special quilt.

 

 After all his testing and blood drawing (miracle #1 for the day, his blood draw was a 1st time success!) we went back to the hotel.  We crossed paths with an older couple who saw Gideon's O2 and feeding bag and asked, "Heart surgery?"  Come to find out, their kid had surgery when he was a baby.  He was now in his 30s.  I sorta felt like that was Heavenly Father just giving me a little "things will be OK pat on the head" type thing.

We got up around 5AM to get him to the hospital.  That was about 1% exciting and 99% horrifying for me.  I'm so uber practical.  I knew how big of a surgery he was going to get and the practical side of me just trumped the faithful side of me. 

I had an interesting experience when his surgeon walked in.  He came in just to say hi.  He walked over to Gideon and patted Gideon's back and listened to his chest (every single time anyone with a white coat came in, they did that.  Listened to his chest.)  When he first patted Gideon's heart, I had the strongest feeling of a literal hand over my head, turning my eyes to stare at the surgeon's hands and then the softest yet firmest voice in my mind saying, "Pray for THOSE hands."  So I did just that.  I stared at his hands and said the most desperate silent prayer, "Heavenly Father, the hands that I'm staring at right now, please guide them through Gideon's surgery.  Put Thy hands over those hands and guide them."

Then Dr Warrel left and then his anesthesiologist came with Molly, the nurse who would be with Gideon through the surgery.  And they took him. 

Matt took this picture.  I had started crying already.  Gideon was sleeping.

The surgery would be 6 hours.  Matt and I sat in the waiting room for a lot of it.  I wasn't hungry.  We played some card games that a friend gave us and I started knitting.  I thought, "I'll knit washcloths while we're at the hospital.  See how many I end up with."

While in the waiting room I met a lady who married the kid brother of a guy that my TX friends all had crushes on (well, most of them anyways) back when I was around 14.  Small world.

Then God sent me a tender mercy by sending in a mom with her 12 year old son who had down syndrome.  He reminded me of what Gideon might be like when he's 12.  He had brown hair, Gideon's ears, and a basketball player on his t-shirt.  He was on a little lap top.  He started giggling and hid his face behind the laptop, whispering stuff to his mom.  She looked up and told me, "he thinks you're pretty."  Then about 15 seconds later, he whispered something again, giggling.  She then said, "now he wants to marry you.  He's very fast with the ladies."  He started giggling yet again, motioning for his mom to lean in for another set of instructions but this time she said, "you tell her yourself!  I aint your wing man!"
Of course it was hilarious, but of course it got me all emotional because I wanted that so badly to be Gideon and me.  Gideon a ball player and me telling him I aint his wing man!

15 minutes post the 6 hour mark I started to panic.  Yup, I did.  Especially when the nurse came in and simply said, "things are great!  Still working on him though."  WHAT?  This was when she was supposed to say they're closing him up.

It would be TWO HOURS later that we'd get that update.  Gideon was on the bypass machine for a total of 8 hours when all was said and done.  His nurse Ami later told me that when she was told she was getting a baby who was on bypass for 8 hours, she said "I was apprehensive."  I found out later on that sometimes babies don't survive the surgery Gideon had.  To be grateful actually that he had downs.  The saying goes, "you can't kept a downs baby down" in the PICU.

Seeing Gideon for the first time was hard.  They had to paralyze him and he had so many tubes coming out of him and wires going into him.  But to be honest, as hard as it was, I wasn't emotional.  I was relieved.

The next 2 days he was passing with flying colors.  I wondered if we'd be out in 5 days, but I had a sense, a feeling, that I needed to just sit back and buckle up.

Long story short, Gideon started going down hill after the 3 days.  We ended up at the hospital for a total of 24 days.  And in those 24 days, I have to say, I had never before seen God's hand so clearly in my life.

When I was pregnant with Gideon, the adversary worked so hard on me.  Harder than I had ever EVER experienced in my entire life.  I had the craziest thoughts going through my head, the darkest feelings, the most desperate of days.  And then Gideon was born.  A spirit so elite in the pre-life that he didn't need to be tested like most of us do here on Earth.  And my 24 days in the hospital were filled with so many tender mercies and experiences testifying to me that God exists and loves me, so many "coincidences" that were so incredibly coincidental that you had to believe "there are no such things as coincidences, the Author just chooses to remain anonymous." 

A lady from my new ward called me.  We had never met but she called because she knew what we were going through and sympathized.  "I had a baby who needed heart surgery, we lived here but I had to stay up in Spokane with 3 kids at home.  I know exactly what you're going through and my heart just breaks for you."  Then she shared with me how, during a certain experience, she was reminded by an impression in her mind, "I have carried you through this."

That struck me so hard. 

Because I am sincerely so weak.  My trust in Heavenly Father and my faith are so weak.  But the Lord doesn't fault me for it.  Rather, He has so lovingly placed people in my life these past 6 months who have been His angels.  His angels to carry me, to hold my head up, to help me put one foot in front of the other.  He'll lead me to people who will say things that I need to hear, He'll give me experiences that prove, with out doubt, that He's aware of Gideon and my feelings.

Heavenly Father is so patiently strengthening me through Gideon.  He has put women in my life who have passed through similar and even tougher trials than this one.  The strength that I see in these women.  In my eyes they stand shoulder to shoulder with those mothers in the Book of Mormon who taught their sons to have faith.  These mothers sent their sons into battle.  None were lost.  The faith and power of these mothers brought about the miracle of "moving mountains."  It's a blessing and a privilege to know modern day "mothers of stripling warriors."

I feel so loved by Heavenly Father.  I know He's real.  I know He answers prayers.  I'm a standing witness, proof, that I don't have to have perfect faith in Him or perfect trust for Him to love me.  I just need to work at it.  I just need to have a desire.  He's taken that desire of mine and worked mighty miracles in my life.  And as time goes by, I know my faith and trust in Him can grow and grow and strengthen and strengthen. 

And I feel so strongly that Gideon will be a big part of that growth and strengthening.  I think that's a huge aspect of our eternal relationship.  I think Gideon strengthened me in the pre existence.  I think he held my hand and led me to greater things than what I could have done on my own.  I sense his strength as I hold him.  I sense that he's an "older spirit" than me.  It's just my privilege that I get to be his earthly mom.

Gideon came home on August 29th.  Healthy and well.  The doctors are happy with how his heart looks.  We're not out of the woods yet, we still have the possibility of another surgery down the road.  In the mean time, I know I'll continue to strengthen my relationship with my Heavenly Father and those angels He's put in my path.  And in the mean time, we'll enjoy Gideon.  He is an elite spirit and an extremely loved baby.

P.S.  I ended up making 12 washcloths

5 mos as a mom with a child with downsyndrome

Last month I was in the grocery store with G-man.  Just the 2 of us.  He was in his stroller, hooked up to his feeding and O2 tubes.  I just had to grab a couple of things.

We were in line in front of a lady with 4 kids.  They were all close in age and super well behaved.  She still looked disheveled.  I guess the totally "hands on" moms look worked.  This is no job for the prissy!!  ;)

She noticed G-man and asked me what was up. 

It floors me that I am now the mom of a child who gets "the looks" from strangers.  Floors me.  F.L.O.O.R.S  M.E.  I totally see what it's like now to be on this side of the fence.  And I can say, in all honestly, that I WANT people to ask me.  Because I KNOW they see him.  He has tubes.  He looks a bit different.  A bit gorgeously different, but different all the same.  I want to tell the world about him, not have him be some curiosity fodder.

So she asked me. 

And I told her. 

All about his heart I told her.  How he has a handful of things wrong but seeing doctors who will operate on him etc.  Come to find out her oldest son also had open heart surgery.  Come to find out, we share cardiologists!

And that's as far as the conversation went.  Just his heart.

Nothing about his having downs.

I couldn't.

Because I knew if told her he had downs, I'd start crying.  I knew that if she saw me crying, she'd think that I was sad that he had downs.  I knew that she'd think that maybe I felt I was cheated.  That life sucked to be a mom with a child with downs.  That I was stuck with a burden for the rest of my life or his. 

And quite frankly, I didn't have time to explain my tears.

I had time to explain my tears though to a teller at our bank.  I've gotten to be good friends with her actually.  I was at the bank a few days later and we got to talking.  She knew all about G-man and I knew all about her youngest brother who is now 52.  Both have that extra chromosome.  I told her about my experience at the grocery store.  And to her I explained my tears as they came pouring out, right at her desk.

"I couldn't tell her because I knew I'd cry.  And I knew she'd think I was sad.  But I'd have cried because having a child with downs is so special."

We both started crying actually.  She shared with me the intense bond her own mom had with her baby brother.  How they had such a special connection.  How when she passed away, he KNEW even before anyone told him.  How during her last days, only he could bring her out of her lucidness, how she would always ask for him and only him.

Having G-man as my son is the most special thing that has happened to me.  It's a constant spiritual experience.  It's an awareness that he did some pretty amazing things in the pre-life that granted him protection here on Earth.  When I hold G-man, every fiber of my being tells me that he's older than I am, that he's more advanced than I am.  I can already tell he's more patient.  I can already tell that he's more accepting and loving of others than I am.  I can already tell just as he took me by the hand in the pre-life and helped me do who knows what, he will continue to take me by the hand in this life and help me to do who knows what.

It's such a special privilege, blessing, to have him.  Which explains why it's so hard for me to tell people about him, about the REAL him, because it's so special.  It's almost sacred.

And this further explains my complete and absolute mental and emotional condition as we hit the 10 day countdown to his surgery.   Be it known, I'll be a complete mess.  I know how I'll handle it.  I'll go into survival mode more than ever before.  I won't visit friends, talk on the phone, nothing.  Cuz it's how I deal.  I'll escape to my quiet place in my mind as I try and distance myself from my reality.  The reality that I could possibly lose G-man and not have him with me.  I know this is a complete lack of faith.  It is.  It's also how I try and protect myself from what could be the greatest pain I'd ever feel. 

I'm too afraid of thinking of hoping for a future with him because a future with Gideon, a heart healthy Gideon, would be like having an angel accompany me here on Earth.  It would be just so awesome!

If you're reading this and if you've been given the news that you are pregnant with a baby with downs, please don't take this as bad news.  If you've been given the "opportunity" to choose between keeping the baby or aborting, believe me when I say, you are carrying a literal angel and you will know this the minute you hold your baby.

Shame on our health care system to address these pregnancies as "oh, I'm sorry, but ..."  Health care providers should hand golden tickets to moms carrying babies with Trisomy 21.  These moms should be applauded, should even be admired.  Because we get to raise angels.  And we get to experience a bond with these special babies that no other knows.  I have a close and special bond with all my kids.  But with Gideon, it's different.  It's beyond an "intense desire to protect."  It's more like, ... he completes me like no other.  We are each others.  I am his and he is mine.  It's like the most intense love story ever. 

He lets me soothe him like no other.  He cries and when I hold him, his calming down is practically immediate.  When I'm angry, all it takes is a few seconds with him, holding him, and my anger ebbs.  A tiny smile elicits a belly laugh from me.  Gideon and I have a connection.  It's a heavenly connection. 

Moms who have kids with downs will understand this connection.  Don't abort.  You will lose out on so much.

It's only been 5 months and I've learned this much about Gideon.  I pray and pray and pray that I get to keep him for so much longer. 

He's my buddy.

1st miracle

We have 3 huge massive issues on our plate. 
#1 ~ Gideon.  He's not an issue per say, he's actually quite perfect.  It's his heart.  I've written plenty about that and will write more I'm sure.
#2 ~ Selling our house in VA.  This is a huge financial issue.  Because as long as we have it, every month we're paying mortgage on it along with our rent here.  We've had 2 contracts so far on our place.  And we've been totally screwed by the inspector these would be owners have hired.  I'm not going to go into detail here, but he truly has screwed us.
#3 ~ Have you ever tried to find a place to rent here?  If you have more than 2 kids, it's next to impossible.  If you have 9.  Well, all of a sudden a snowball's chance in hell looks pretty good.

This post is regarding point #3.

Not only did we hate where we lived, (well, hate is a strong word.  The house was great, but really, only if you had max 2 kids) but our landlord was ready to have us out.  We were probably there "against code" as the house really was too small for 11 people.  She let us know that she had already found tenants and we needed to be out by the end of June.

And we were in May.

And between Matt and me, we had literally turned over every stone, wood chip, leaf, and twig looking for a place to rent.

Nothing.  Literally, nothing.

Because who wants to rent to a family of 11.  And we were running out of time.

It was over the course of about 3 days that I kept having this "feeling" to post on FB that we needed a place to rent.  I seriously ignored it because we don't know a ton of people here, so not a bunch of people on my FB from here.  On around the 3rd day, I specifically remember walking down our tiny hallway towards the living room and that same feeling came, "post it on FB."  I headed straight for the computer and updated my status.

About 5 minutes later I got a private message from a friend of mine who I met thanks to sports.  See how great sports are?!  Sports never fail!!  ;)  Her son played football with mine and her daughter plays soccer with my daughter.

She messaged that they were buying a home and moving out of their rental and that the house would be perfect for our family. 

Long story short, we moved into our new rental June 18th!!!!! 

Besides the fact that the kids love it and the "lemming syndrome" has vanished, this house is proof that there is a God, His "thoughts are not my thoughts, nor His ways my ways."  His timing may not be my timing, but when it comes down to it, moving here is a testimony to me that His thoughts, ways and timing are WAY better than my own.

Come to find out, this home was basically the home that God had in mind for us all along.  When I wanted to find a larger place to stay a year ago, this house wasn't ready.  So we had to stay put.  And wait.  It was basically ready for us at the moment that we really needed it.

The location allows for the kids to access the bike path quickly and safely.  There's over an acre of land the kids can play on.  The house is far from roads.  It's in a very quite spot. 

Enter Gideon.

There's a separate living area downstairs that allows for guests.  ie Grandparents who need to stay for long periods of time to help because of Gideon.  The house is designed in such a way that if anyone is sick, it's quite easy to stay on opposite sides of the house to better protect Gideon from getting sick.  It's so important that Gideon not get overheated.  This house is one of the few in this town that has central air.

I don't think there were many homes in this town that could have been more perfect for Gideon than this one.

I find it so very interesting the Lord's hand in our rental stress.  He knew we'd have Gideon, so He had us wait.  Then He whispered into my ears for 3 days, telling me to put it on FB.  And my friend just so happened to be on FB to read my post.  Even though I was literally going out of my mind, even having emotional crying spells because of the stress of being in such a tiny house, Heavenly Father made me wait because He knew what we would REALLY need.

And it ended up being more perfect that I could have even imagined.  Heck, there's even a cherry tree here!  He knows that's one of my all time favorite things to eat!!  And it's not fattening!   Quite the contrary!  ;)

I think He's trying to teach me that it's OK to trust Him.  More specifically, to trust Him with Gideon.  That has been my biggest thing these past 5 months.  I need to be able to trust Him with my Gideon. With HIS Gideon.

I was thinking the other day, if our other 2 stressers, Gideon and the VA house, get taken care of as well as Heavenly Father took care of the rent situation, then everything will be better than OK.  Everything will be perfect.  More perfect than I can even imagine.

I need to trust Him better.  He's ever so patiently showing me that I can and should.

1st real look

Last Wednesday the docs had their first real look at Gideon's heart.  We drove up Tues evening cuz they needed to see him Wed at 6AM.  The hospital put us up in a motel for free.  That was cool.  And it was a pretty nice hotel.  Couldn't totally enjoy it.  A:  Because of the reason we were there and B:  We got there like 11PM.

The next morning we brought my sweet angel in and handed him over to the crazy Asian lady nurse who I swear weighed less than Gideon.  She was definitely a loose cannon but I still liked her.  I like people who embrace who they are!  And she embraced!

It was supposed to be a 2-4 hour procedure.  A heart cath.  An angiogram.  SIX hours later the doctor comes out and says, "the longest and hardest part of the procedure was getting his IV in.  So we had to put the line in his neck."  Then left.  I was like, "uhhh, hmmm. I just want to know if I'll get to be his mom here on Earth or not."  Half an hour later, crazy Asian comes out and even though she must've been 60 (OK, she looked 60, so that'd put her at about 100 years old) she FLEW down the hall.  You couldn't keep up with her if you sprinted.  And it wasn't even an emergency.  She was just some dynamite speed walker.  She kept turning her face at us and saying, "Come!  Come see your baby!"

Poor Gideon.  He was all banged up.  His cry was so weak and pathetic cuz of the that tube thing and he hadn't eaten for SO LONG.  I just held him.  Ohhh how I love holding him.  So much of him to hold!  I love it!  And he's so incredibly sweet!

After about an hour in the post op room, his doctor finally came.  It's such a trial of your patience there.  It's like when you're eating out and you can't wait for your food to get to you.  That's like the cardiologist.  Any hint that the doctor could be the person opening up the door, your heart just skips a beat, hoping it's him.  Most of the time it's not.  It's a random parent or nurse.  And you get so disappointed.  But then when you see him, at least for me, the adrenaline picks up.  I was willing him to come to me. Like when the kitchen door opens and the guy comes out with the round tray of food.  You're just willing that food to be yours.  If they go right by, the disappointment is huge.  When they stop right in front of you, well, you know the feeling.

Dr G. walked over, sat down in front of us and said, "OK, ... first let me show you what I saw ..."

I'm not kidding, my heart plummeted.  My insides turned to ice.  He started fiddling with the computer, looking over his notes.  Finally I said, "IS IT GOOD NEWS OR BAD NEWS?!?!"

And just like that, Dr. G. said, "it's good news."

So here's what they found.  The coarctation of his aorta valve is actually more narrow than they had thought.  They thought the narrowing was bigger, but no.  Smaller. 
The PDA was still opened.  For normal babies, it shuts.  Not Gids.  But they THOUGHT it was super small.  Nope.  It was much bigger than they thought. 
The GREAT news however was that his right ventricle, which is smaller than the left, isn't THAT MUCH SMALLER.  That was awesome news!!!!  That meant they CAN FIX HIS HEART!! 

Because of the other things however, they have to fix his heart in stages.  He wants to schedule a surgery to fix the narrowing and the PDA sooner and then a month or so down the road, the AV canal.

I still can't believe I'm a parent of a child referred to as "critical cardiac failure" and pulmonary hypertension.  Though regarding the latter.  Doc is hoping that the lung issues are a direct result of his heart and that once the heart is fixed, the hypertension will resolve.

It was around 4 when we finished talking with him and ready to go at 5.  But of course Gids developed a clot in his leg, so we got admitted.  And they found out he had 2 types of viruses, so they put us in quarantine.  Which ended up being fine because we got another free hotel stay and Gideon was in a room all by himself.

I use the word "fine" very loosely.  Walking the halls of the hospital, the thought, "I can't believe this is my life" comes and goes non stop.  I really can't.  I can't believe that we've been there for so long and so many times that nurses REMEMBER him.  I'm used to active, healthy kids.  When it comes to hospitals, it's only the labor and delivery wing I utilize and only for 1, maybe 2 days.  Not the NICU, not the PICU.  I'm used to midwives, not cardiologist.  Normally, if I'm ever at hospitals, it's me walking past rooms, taking quick glances at the people sleeping in their beds.  Now it's the other way.  I sit there, holding my baby, looking out from my room, seeing people walk past, as if I'm a zoo animal or something.  I know what they're thinking.  "Poor poor lady.  Poor poor baby she's holding"  I know that because I thought that.

Gideon handles things so much better than I do.  He loves staring at his nurses.  It's almost as if he's flirting.  He just stares and wiggles around, blasting out poops as if that's the way to make the ladies swoon.  He hates having his blood pressure checked but LOVES it when his nurses hold him.  He also loves it when they dip his binkie in what they call "sweeties."  It's basically syrup.

He's a strong kid.  That's the constant feedback we get.  How strong he is, "especially for a baby with downs AND heart failure."  They're amazed at how well he engages others.  He loves people. 

But he loves me most.  Nothing can comfort him like I can.  He can be so upset and all I have to do is hold him and talk to him and immediately, he settles down.  My heart just soars every time this happens.  I love that he loves me.  That he needs me.

Because the feeling is so incredibly mutual.  Ohhhh how I love him and need him.  Heavenly Father gave me the biggest compliment when He gave me to Gideon.  Not because He "trusts" me with Gideon.  But because Gideon is such a strong, valiant, mighty and loving son to his Heavenly Father.  And I get him?!

Already I have had some very important relationships strengthened because of him.  Already I have become a softened person because of him.  Already I have become a more dedicated wife and mother because of him.  Gideon is my buddy. 

And his cardiologist said he can fix him!

Latest quilts

Matt said I needed an intervention.  That I'm going a bit "quilt cray-cray." 

And he's RIGHT!  I can't stop!!  I even go to bed just imagining what my next quilt will be, what colors I want to use, how big.  Will be back be flannel, minky or cotton?  I've made 5 quilts in the past 2 weeks and I have 4 in my "que."

I'll post 2.  I already found homes for the others, but these 2 are still here with me.  One is for Gids and the other still needs it's "matching quilt" before I can send it.

See the Loft label?  It's cuz I totally screwed up that part and had to cover it.  That's how I covered it.  Now I want to put a label on every single one of my quilts!  ;)  Makes 'em look legit!

May 28th

I just figured out how to post pictures.  OK, so I knew at one time, but I remember posting them one day and it wasn't working so at that exact moment, I put it in my head that the blogging site had changed up how you could post pictures and I didn't want to spend the time figuring it out. 

So I stopped posting pics.

Then today I tried it out again and viola, it worked!  So now I can post the week's goings on AND pictures!!

And of course, pictures all have Gideon.  That's just the way it goes!

Tonight Angela was holding him and she started messing with his cheeks, squeezing them.

The kids, well, the younger ones, started laughing so hard.  His face was just sooo funny!  And he just stared at the reaction he got, staring at all this siblings, wondering why they were laughing so hard.

Life tonight was good. 

Oh, I'm having some serious quilt issues.  I can't stop quilting or thinking about the next quilt I'm gonna make or wanna make. 

I made this one not too long ago.  I wish I could make the small pics right next to each other.  Kind of annoying.  Anyways.  Well, tonight I just wanted to post a couple of pictures.  I need to stop posting on FB so much cuz I'm so, I guess narcissistic or something cuz I always check my FB after I've posted something to see who likes it or to see if there are any comments.  That's terrible!  OK, I'm tired. 

Test

Just checking to see if I can post pictures here.