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:
Monday, August 31, 2009
Friday, August 28, 2009
Saturday, August 22, 2009
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
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!
Okay, I'm still missing the boys but this sure takes the edge off.
Monday, August 17, 2009
I think we'll drown our sorrows with popsicles and lemonade and watch a Barbie movie.
-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.
-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
Goodbye to the ICU! She gave us a little half smile for the occasion.
A room with a view!
Saturday, August 15, 2009
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)
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
Listening to the iPod helped Noelle feel calmer and she could tune out all of the doctors.
8/14/09 Friday- Nap time after getting her ventricular pacer wires out. It was a little ouchy but she did great.
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!
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
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
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!
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.
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
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
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
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
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.