Monday, August 31, 2009

1000 Gifts--The Thankfulness Experiment

holy experience


I am so excited to begin my own list of One Thousand Gifts along with the Gratitude Community at the Holy Experience blog!

So many times over the years I have whined and complained and completely taken for granted the beautiful gift that my life is. Never have I realized that more than during the last few weeks. Noelle's surgeries and recovery have produced in me an intense appreciation for God's love for me and the way he has blessed me with the people, places and things in my life.

I look forward to more joy in my life, simply because I am looking for it.

I thought it would be easiest to start with the first ten things that come to mind. I am thankful for...

1. hugs and kisses from sticky little hands and faces.

2. kindred spirits in the workplace.

3. friendship with my husband.

4. air conditioning.

5. celebrating 4 years of my son's life.

6. eager friends picking veggies and weeding our huge garden!

7. confident and capable surgeons.

8. good neighbors.

9. my laptop.

10. This song:

(Remember to pause the playlist at the bottom of this page)


Friday, August 28, 2009

I am the champion...

...according to my 4 year old son. He gave me an improvised champion trophy (a toy train station building) after I won 3 out of 4 Hotwheels car races this afternoon!

Little boys are so fun!

Saturday, August 22, 2009

Settling In

How glad I am that the most exciting things happening to us right now are watching a new batch of barn kittens, going school shopping and relaxing with dear friends. I'm ready to be drama free for a while!

We are adjusting to the new normal of Noelle's healing process and the lifestyle changes that her medication requires. Noelle will need blood tests twice a week to see if the dose of coumadin (blood thinner) she is taking is at the right level. Eventually she will only need to be checked once or twice per month. It is about a 35 minute drive to the anti coagulation (hematology) clinic so it will be nice when we don't have to go as often.

We also have to make diet changes for Noelle. Well, to be more precise, we need to provide a more consistent diet. There are some foods(all the green veggies, which contain vitamin K)that she needs to eat the same amount of everyday or it will decrease the effectiveness of her medication. There are also foods, medications and supplements that are best to avoid such as soy, mangoes, vitamin E and garlic supplements as they can increase the effects of coumadin. The anti coag clinic's philosophy is to live your life and they will help adjust your dosage so you can live your life. Basically, anytime there is a change in diet or Noelle gets sick and needs antibiotics, etc., we need to be on the phone with them.

Yeah, it's a bit daunting.

I am not very good at meal planning and tend to fly by the seat of my pants more than I should; I guess it's time to make a change!

We also need to be careful about Noelle's physical activity for the next 6 weeks to give her sternum a chance to heal. So no PE, recess, bike riding, swinging, cartwheels; bottom line, all the fun stuff that our active girl loves to do is out for a while. Bummer!

Tuesday, August 18, 2009

Where does your food come from?

Check out this great post from Nature Mom's blog. She put into words better than I could the many reasons to be intentional about your food choices.


p.s., It's so nice to post about something besides hospital stuff. We're doing great tonight. Noelle and I took a walk up the street from RMH to this fabulous little store called the Metropolitan Market. A bit spendy but such a treat for the senses. Much of their produce is out front in little umbrella covered carts and the entryway is lined with cut flowers. Not to mention their incredible deli! Sweet Noelle stopped to smell the flowers and admire the colors and shapes of the fresh fruits and veggies. I love that kid!

Freedom!


WOW! We are getting discharged later today! Noelle's anticoagulation level is really close to the goal so they feel comfortable letting us go with daily outpatient blood draws to continue to check her levels. Hopefully we can get plane tickets for tomorrow or the next day. In the meantime we will stay at the Ronald McDonald house.

So, to sum up, Noelle will go home on blood pressure, anticoagulation and pain meds. We will also need daily blood draws for a while at a local anticoag clinic (about a 30 minute drive for us).

I am so excited and hyper that I don't even need coffee this morning! That's saying a lot!

Now I just feel silly about last night! Oh well.

Btw, for those of you following on facebook, here's a pic of the famous, much longed for PINK BALLOON!!

Not wallowing anymore

Noelle woke up a little while ago feelin' pretty good from her last dose of pain meds. So we're having a midnight slumber party watching Bedtime Stories, eating potato chips and giggling like crazy.

Okay, I'm still missing the boys but this sure takes the edge off.

Monday, August 17, 2009

Apart

I just said goodbye to my two favorite guys in the world and now I'm crying for the first time this whole stinkin' week. I've never been good at being apart from Joel and saying goodbye to Zach too is almost too much. I feel cut in half. I know we will see them in a few days but it doesn't stop me or Noelle from being the two saddest chicks on the 4th floor.

I think we'll drown our sorrows with popsicles and lemonade and watch a Barbie movie.

The Best and the Worst

The WORST:

-hearing my own "worst case scenario" come to life -- my daughter needs a valve replacement NOW, not years down the road; that she was, in the doctor's words, a ticking time bomb over the past year.

-watching them take her away, feeling my empty hands.

-visualizing what a heart-lung bypass must look like on MY daughter.

-walking to meet the surgeon, hand in hand with my best friend, holding our breath, hoping beyond hope, also fearing the worst.

-sleepless nights and the inability to provide comfort to a sad and restless little girl.

-witnessing the open wound of grief.

-seeing babies hover between life and death.

-weariness.


The BEST:

-feeling hundreds of prayers lifting us up, bringing God's peace.

-hearing the best possible news, hugging my best friend, telling each other she's really okay.

-forging instant friendships in the strangest and most difficult of circumstances.

-reconnecting with old friends.

-knowing how much we are loved by our families.

-cuddles and snuggles and lots of I love yous from the two greatest kids on the planet.

-enjoying the rain washed air, lush greenery and delicious food of Seattle.

-celebrating the removal of each tube and wire.

-knowing that God is making me into a much more loving and much less selfish mommy.


Sunday, August 16, 2009

Blog Discovery

If you need a little (or a lot) of peace, poetry and beauty then spend some time at the Holy Experience. I was temporarily transported to another place. One without beeping monitors, incisions, tubes or pain meds.

Goodbye ICU!

After a wonderful morning snuggling with my little girl, we got to move to a cushy private room on the peds floor! I am so excited to take one step closer to home. Noelle is sleeping peacefully right now in this sunny room with a beautiful view.

Goodbye to the ICU! She gave us a little half smile for the occasion.
A room with a view!


If you think about it, could you pray for a grieving family? As I walked out to the ICU waiting area to call Joel with the happy news of our move, I passed a family grieving the news of their lost little one. Their pain was so raw. It was heartbreaking to witness. It could so easily have been us a few days ago. I am thankful for more time with our sweet girl but have a fresh awareness of how fragile life is. I am praying that this family would somehow be aware of God's loving presence and peace in their darkest hour.

Saturday, August 15, 2009

Making Progress

I got to watch Noelle's chest tubes come out tonight which was very interesting and a little bloody (I'm glad it was me and not Joel, he hates that kind of stuff). Noelle was given some good pain meds before they did it but as usual she fought against it and wanted to watch what they were doing to her. It did hurt a little bit but she was so brave. Her catheter is out too and now she is sleeping peacefully with her daddy watching over her in the ICU. I am fairly certain that she will be moved to the peds floor tomorrow.

I am about to enjoy a blissful night's sleep at RMH curled up next to my little boy.

***I have to give props to my hubby! He watched the nurses take out two of her IV lines this morning (sunday)! Nice work! ;o)

Long Night

It was a long night with my poor, cranky little girl. She just couldn't get comfy for long and sleep eluded both of us. It really bugs her that she can't get out of bed, can't get up to go potty, can't take out all the tubes and wires, and can't play with her friends!

I'm so tired today but really enjoying some quality time with my little Zman at RMH. We got to play outside, eat snacks and watch videos. Good normal stuff! Feels good.

I haven't had chance to ask Joel how rounds went this morning so I'm not sure what the official plan for the day is. Hopefully Noelle will be moved to the peds floor if they can just get her weaned off drip blood pressure meds and regulate the blood thinner.

Friday, August 14, 2009

Singing Praises for Mya!

Sweet little Mya is doing very well after her surgery today! See her update on her mommy's blog here.

Pictures

8/11/09 Day before surgery at Ronald McDonald House8/12/09 Day of Noelle's surgery (aortic valve replacement and Konno procedure). This is where we waited for the anesthesiologist before they took her back. The location of the infamous Versed spitting incident!
Listening to the iPod helped Noelle feel calmer and she could tune out all of the doctors.
Zman fell asleep (eating his "Cheetas" as he calls them) while waiting for his big sis to get out of surgery.
Post-surgery in the ICU. She has her breathing tube in, 3 IVs, 3 chest tubes, pacer wires, and a partridge in a pear tree! ;0)
8/14/09 Friday- Nap time after getting her ventricular pacer wires out. It was a little ouchy but she did great.

Having a Good Day

My Noelle girl is napping peacefully right now after a good morning. She has been much less agitated and more comfortable so far. She even asked to play with toys (although she fell asleep before we could bring them to her). She has also been eating and drinking a little bit.

Today's plan is to wean Noelle off the drip blood pressure meds and onto an oral one. She had one blood pressure pill this morning with her yogurt and it seemed to be helping. As soon as they get her off the drip then she can go down to the peds floor, possibly tonight although tomorrow morning is more likely. They won't be taking out her chest tubes today because she needs to drain more. Her catheter may come out later today. Heart rate and temperature are great today! We just have to get that blood pressure under control!

Each thing they pull out or take off of her is cause for celebration in my book! It is so good to see her looking more like herself.

Uncle Beau and Jessa are taking care of Zach today so we don't have to worry about keeping him busy. I miss him so much though! Yesterday he had a blast at the Woodland Park Zoo with grandparents, cousins and Aunt Genia. Our family has been so awesome, supportive and truly helpful! We are so blessed. Auntie Anna and Uncle Matt stopped by too! Most of the fam is leaving today so I'm praying for safe travel for them all!

My Determined Girl

Anyone who knows Noelle can tell you about her determined personality. She loves to be in charge and she wants to know about everything and everyone around her!

Here are some nuggets of Noelle from yesterday:

After she came out of sedation and her breathing tube was out she asked me if her heart was still open. When I told her no then she yanked up her gown and said "I want to see it now! I want to see the scar! I want to see the tubes!!!".

She often asks me "How many IVs do I have? Where are all of them? What are they for?".

She knows who she wants too! Yesterday she said "I want my daddy RIGHT NOW!" followed by a very impatient, "and where are all my grandparents?".

Ha ha, that's my girl! She's in better spirits today. We aren't hearing the words "right now" following every statement anymore.

Thursday, August 13, 2009

Breathing tube is out!

Noelle was extubated about 20 minutes ago and she was SO happy to get that thing out of her! When the doctor asked her if she wanted to get her breathing tube out Noelle gave her a huge smile and nodded her head.

Now that she is able to talk she keeps asking us "Did I have my surgery yet?" and when we tell her yes then she smiles and says "Yay!". She's pretty frustrated though and wants to get out of bed. She was upset that she can't walk yet.

She had a good night but today they are having some difficulty keeping her blood pressure and heart rate down. She also has a bit of a high temperature but hopefully the tylenol will kick in soon.

Joel and I are tired but doing well overall. Zach has been busy having fun with grandparents, his aunt and cousins. They all went to the zoo this morning. I miss my little Zman, though I know he is being well cared for and loved!

Wednesday, August 12, 2009

Successful Surgery!!!

Our sweet girl is going to be okay! The surgery was a success. Thank God!

Initially, the surgeon had some difficulty getting started due to a tremendous amount of scar tissue that formed after her last open heart surgery. This was the cause of the hour delay this morning before they could start the actual surgery. They literally had to peel her heart away from her chest and take out all of the scar tissue. The surgeon said it was one of the worst cases of scarring he had ever seen.

After that, everything went as planned. He was able to get a large enough valve in place to be able to last her a lifetime. Her heart did not go into block so she will not need a pacemaker.

I'm just so thankful and praising God for such a good result!

We should be able to see her in ICU within the half hour.

Thank you all SO much for praying and letting us know how much you love us!

In Surgery

Noelle's surgery started at about 10:20 this morning and should last between 4-6 hours.

She was not a happy camper this morning. So much fear and anxiety. It was harder this time. The docs gave her Versed to mellow her out before they took her back to the OR but it took awhile to kick in (especially since she very forcefully spit out the first dose we attempted!). She's such a fighter and I could tell that she didn't want to give in to the meds.

We will be paged again when she goes on heart/lung bypass.

The support, love and prayers from everyone has been incredible. Keep it comin'! I know it's the only reason I can sit here reasonably calm and write this.

Please also pray for the Tiegs family. Their sweet little Mya is also here at the hospital and had heart surgery. Here's the link to their blog. Stop by and let them know you are praying for them.

***UPDATE***
Just got a page. Noelle is on bypass and all is going well so far.

Just hearing that makes my hands shake and I try not to visualize too much. Deep breath! Thank you Lord for the strength to do this.

Tuesday, August 11, 2009

Pre-op appointments done

We survived our busy day of pre-op appointments! Everything is good and we will check in to the hospital tomorrow at 7:15 am. The surgeon has decided that it would be best for Noelle to use a mechanical valve. He is hoping to insert a valve that will be large enough for her when she reaches adulthood. The doctor is also doing the Konno procedure which will create more room in the subaortic area. This carries a 25% risk of something called heart block and would require a pacemaker. Please pray that Noelle's surgery would be free of complications!

The Ronald McDonald House had an opening for us today so we are grateful to have settled in there and glad it is so close to the hospital.

I am so thankful for wonderful family who drove all the way to Seattle to be with us today! They made us all feel so special and loved.

Pray also for strength and peace for us tomorrow. I know God will give us enough for each day.

Love to you all!

Wednesday, August 5, 2009

Wow, that was quick!

Seattle Children's just called. The surgeons met early on Noelle's case and she is scheduled for surgery next wednesday.

Back Home

Well, we are back home!

Noelle and Zach are chillin' out watching cartoons, Joel is getting his braces off at the orthodontist and I am catching a little sanity time.

We talked to absolutely everyone at Seattle Children's that we possibly could to try to get the valve replacement surgery scheduled sooner so we would not have to make another trip back, but to no avail. Right now we are just waiting for the docs to call us with a surgery date.

I'm not sure what this will mean for Noelle starting 1st grade or for me going back to work at my school.

I don't want to think about it right now, I just want to relax and enjoy the peace that today holds. I am not up for worrying about tomorrow at the moment!

Love to all who have prayed for us and given us support! You mean more to us than you could ever know!

Monday, August 3, 2009

Surgery Update

Noelle is in recovery after her cath lab procedure. They had to put a stent in her aorta rather than just a balloon dilation. Everything went well and her aortic arch is looking much better. We did have to sign on to a research study on an emergency basis after the doctor went in and decided she needed a stent but the typical bare metal stents that they use was not a safe option for her. They used a stent that is covered by a stretchy material (like gortex) and is experimental at this point but Seattle Children's is one of a handful of hospitals that do this routinely.
The big news is that the rest of her heart is not doing as well as we thought. She will need a valve replacement within 1-2 months (as soon as they can discuss her case and find the first available spot in the schedule).
As you know, we were hoping that this would not need to happen for at least a couple more years but apparently she is more of a ticking time bomb than we knew. Pretty scary actually; that was hard news to hear.
We are in good hands here. Seattle children's has been amazing so far and we feel well taken care of and informed.
Please be in prayer for all of us but especially Noelle. I fear for the emotional hit she is going to take when we tell her that we will be coming back here soon for the big surgery.

Saturday, August 1, 2009

Ready to Go

I just finished packing for our trip to Seattle!

Please pray for Noelle on Monday morning. She will go into the cath lab to have the balloon dilation done at 11am.

I have felt so loved during the past few days by the many people who have been praying for us and thinking about us.

God is giving us peace and strength.

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