Completely and Totally in Awe

Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine

These are the lyrics to the song Chris and I chose for our unity candle song on our wedding day. Caring for three small children with a life-threatening disease has given me more reason to believe that we picked this song not because it was popular at the time or that we thought of each other when we heard the first few lines. Lately, I can't help but think of the significance of this song in our lives at this particular moment in God's time, in God's plan for us. All this pain and suffering we are enduring is temporary. In heaven, we are promised to be glorified to complete perfection. And the sacrament of marriage points us to eternal life. It is a foreshadowing, a glimmer of the great love we will experience with our Maker.

I began this blog with the thought of "in awe."

It had nothing to do with the lyrics to "I Can Only Imagine."

It had everything to do with the generosity of our friends. I am completely and totally in awe of friends close and not-so close who have offered some pretty amazing things to our family right now. We seriously have the best friends. And I think after I explain why, you'll completely agree with me.

One friend has offered to help with laundry. Another, to watch my kids for an afternoon. And another, taking us out to dinner. And the friends who have offered their humble prayers, I can't even begin to count. If you're reading this and you're one of these friends: thank you from the bottoms of our hearts. We can never "repay" you, but you hold a special place in our hearts.

It's overwhelming how much God takes care of us sometimes. But he will not be out done in generosity. He continually finds ways to bless us for caring for these special children of His.

It's getting late and tomorrow my baby turns 5. Wow, five! Everyone said the time would fly by and they were right. 5 years ago I was changed forever. And tomorrow I'll change again. Thank you God, for blessing our family with the gift of Cayden. I've leave you with this poem that I keep on our fridge. It is near and dear to my heart. It is what I hope to live every day.

Special Child

by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

Cayden, may all your dreams come true. I love you! -Mommy

Are You There God, It's Me Tiffany

Remember the book "Are You There God, It's Me Margaret"? It was a huge phenomenon when I was in middle school to read the book by Judy Blume that followed twelve-year-old Margaret and all her minuscule problems. Today I feel like Margaret. ARE you there God? Between Cooper's three week span of hospital stays, adjusting to all the new medications, and me having mastitis last week I thought I'd seen it all. Last Thursday, Cayden and Trinity's sputum cultures from last week's clinic proved otherwise. Let me start with updates from clinic.

Trinity-gained just over a pound (we'll continue to give her Scandishakes before bed and increase to 3 enzymes before meals and snacks).

Cayden-barely gained any weight. Our dietitian would like us to increase his calories as well since he's on a new enzyme. Cayden's also old enough now to start PFTs (pulmonary function tests) which measure the amount of air exhaled from full inhalation to full expiration (empty). The pulmonary doctors will be able to use these numbers to compare Cayden's to normal numbers for someone his age, height, etc. to determine the health of his lungs. He will continue to do PFTs for the rest of his life.

Back in December Cayden grew MRSA- Methicillin-resistant Staphylococcus aureus- an infection caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.
This month Cayden grew it again and so did Trinity. Protocol for eradicating MRSA includes very high doses of antibiotics both oral and nasal. Some people that grow MRSA once will never get rid of it. Others may. With Trin's recent sputum culture suggesting that the MRSA is active and has more than likely spread from her older brother Dr. Green would like us to try a more proactive approach for the next 3 weeks.

The eradictation process is as follows (this is an exact copy of the email I received from the kids' clinic):

Both Cayden and Trinity now have MRSA by cough throat swab. I conferred
with Dr. Rock and Dr. Conway and later with mom. We will attempt to
eradicate the MRSA in both children and to try to eradicate carriage in the
family.

For Cayden:

1. Bactrim: 2 SS tabs by mouth twice daily for 28 days
2. Rifampin 1 300 mg cap by mouth daily for 28 days
3. Mucopirocin 1/2g or 1/2 of a 1 g tube into each nostril twice a day for
5 days
4. Chlorhexidine bath daily for 5 days and then weekly for the next 3
weeks.
5. Keep the mucopirocin and chlorhexidine out of the eyes.
6. CBC, AST and Cr (blood work) after 2-3 weeks of treatment by Laura Runte or Dr. Kazi
7. Repeat culture in 2-4 weeks after finishing treatment
8. Wipe surfaces that may be contaminated from coughing or nasal mucus at
home with a household disinfectant such as Lysol or
a bleach solution (1 cup of bleach diluted with 9 cups of water) and
let dry.
9. Towels, sheets, and pillow cases or other items that may be contaminated
by respiratory secretions should be washed in hot water and dried on the
hot cycle.


For Trinity:

The same as above except the antibiotic doses differ:

1. Bactrim 15 mL per dose by mouth twice a day
2. Rifampin 4 mL of the 50 mg/mL solution once a day

For Mom, Dad, Colin, and Cooper:

The mucopirocin nasal treatments and Chlorhexidine baths as above but not
oral antibiotics.

Does your head hurt reading this? Yeah, mine too! We started treatment today and things went fairly smooth. 4 more to go! But really God, are you there is still in the back of my mind. I feel so abandoned. Why one more thing...why now? So I'll do my best. I washed all the bedding today and bleached every hard surface in the house, Lysoled the toys. Now, I just need to "treat" myself to a nice, warm chlorhexidine bath!

Getting Organized

It's been almost a week since we brought Cooper home from his hospitalization with pneumonia. 7 whole days to get organized and 'figure out' as best we can what taking care of three CFers really means.

Item #1 "The Medicine Cabinet"
I realize that most families function with a very small, confined space to house all their medications. We, however, took out an entire cabinet section. Before: it functioned as a spare pantry. After: A CFer's paradise



Item #2 "White Boarding it in Style"
I watch too much HGTV. Enough said. We use this handy tool, located in the kitchen near all the action, to keep us on task with all the medicines!


A pic of Trinity enjoying her new "boat ride." Cayden affectionately named the vest a "boat" since it looks just like a life jacket you would wear boating.


Somehow Trinity has managed to make a system of multi-tasking while doing her hypertonic saline treatments: holding her mask and sucking her thumb at the same time


Cooper is doing a great job keeping up with his older brother and sister. He already holds his nebulizer! What a big guy...we're so proud of you Cooper!


While I can't fully capture the essence of the chaos it entails doing daily treatments on a blog, all I can think of to describe it is a massive assembly line. For 2 hours at night we are constantly rotating the three through nebs, oral drugs, vest treatments. It's exhausting. Words don't do it justice...you just have to experience it live!

Extra Baggage

Finally, after 8 days Cooper will be coming home tomorrow. I am elated. Finally, I will get to see my husband again and my kids will get to see their dad. Chris has been taking the night shift and I the day so we have only seen each other in passing (aka "changing of the guards"). I have to be perfectly honest though; I am also very anxious about bringing Cooper home. He's bringing with him 2 exta oral medicines and a nebulizer treatment for the next five days. He has already started and will continue doing Pulmozyme nebulizer treatments (something Cayden and Trinity didn't start until closer to a year old). And so, without any further ado, I present...

The Topel Family Daily Index:

7: number of nebulizer treatments done daily between the three kids
6-8: average number of airway clearance sessions that will need to be done
8: number of oral medications (not counting enzymes)
2: packets of Scandishake Mix for Trinity
1 1/8: number of tsp of extra salt to pass around the table :)
4: number of kids to love
2: loads of laundry to do
7: the hours of sleep I hope to get
1: glass of wine for mom!

And the words I'll savor as I go about my day:
Each one of them is Jesus in disguise. -Blessed Mother Teresa of Calcutta

When Is Baby Cooper Coming Home?

Here are some pictures of Cayden, Colin, and Trinity's first trip to see Cooper since he was hospitalized last Tuesday. They miss him so much and ask everyday "When is baby Cooper coming home?"

Can I Get A Yeah for the Topel 2?

Some new pictures of the kids



Being the mom of three boys definitely has its perks!



Cooper had a great day today! He ate a "normal" amount at his feeding this afternoon---almost 6 oz.! When he was admitted he was only eating around 2 oz. so this is a huge, huge accomplishment.

With all the excitement with Cooper, I completely forgot to bask in our great accomplishment of the Topel 2 team raising nearly $13,000 at our Great Strides walk on May 16th! We have been so blessed with friends and family new and old this year helping us reach our goal! Talk about inspiration, a high schooler from church organized a team of her own and brought in an addition $200. And another bunch of friends ran a half marathon in Green Bay in honor of Cayden and Trinity raising over $500! A mom with a son in Cayden's class joined our team for the first year and helped us raise an additional $130 (in just a few short weeks, mind you) along with some other great families from St. John the Baptist's school also contributing $100 in donations. A 4th grader from Cayden's school even collected money all on her own. We simply have the best friends! It has been an amazing journey. We'll have to start thinking of great new names for Topel 2 since we have become Topel 3. It's still a work in progress! I am slowly starting to work on our kickball tournament slated for Sept. 25th. Let me know if you need a registration form :).

Peace-Tiffany

Before the Morning

"Let us not become weary in doing good." St. Paul to the Galations

Most of you have been keeping up with my short "what's on your mind" facebook status updates, but I wanted to share more about Cooper's health right now.

This past Tuesday I took Cooper to the ER for trouble breathing, lack of appetite, and being overly lethargic. It turned out my gut instict that something was wrong was. His blood oxygen level was low and he needed oxygen to help him breath through whatever virus his small, small body was fighting. 2 days later things were improving, he was eating well and back to nearly "normal." Over the weekend his health made a turn for the worse. He again stopped eating and slept almost all day. When he was awake he would have such terrible coughing spells that he would need chest PT for them to stop. On Saturday into Sunday he started vomitting with each feeding making us concerned that he wasn't gaining weight, but losing weight.

Sunday night was the breaking point. I simply was exhausted from watching my newborn struggle through feedings and then when he finally did eat, throw most of it back up almost immediatley. Without thinking twice we called the CF doctor on call and took him back to the ER to be admitted as inpatient. This time, his chest x-ray showed fluid in his lungs and a blood draw confirmed the diagnosis of pnemonia. The virus Cooper had been fighting took a turn for the worse.

Today, Cooper began IV antibiotics, nebulizer treatments for his cough and chest therapy. At this time, the doctors expect him to be admitted for 7-10 days. Maybe more. Our family priest who has baptized all three of our other children was able to come and baptize Cooper today in the hospital. His "real" baptism wasn't scheduled until June 12th but we know he can use all the more grace now to fight through this!

This is not the norm for an infant with CF to be hospitalized. Neither Cayden or Trinity were hospitaled as infants so it worries us to think that he is starting out in this world already with lung infection. And of course there is no way of knowing if Cooper will have a harder time with CF or not. There is just no way to predict the future. I am confident, however, that because Cooper has the same genes that his older siblings have that like them, he will do remarkably well and have more digesitve problems. As a mom, my heart is breaking. I just want to be able to enjoy having a new baby and even that seems impossible with so many disruptions right now. As a person who tries to do everything perfect, I am judemental. What could I have done to stop this? I feel like if I had only taken him in sooner or done more treatments he would be home with us right now. Pnemonia is a scary thing and I am so fearful for his life. But we continue to pray for God's healing. And we know that we have already been through a long hosptial stay but this feels like too much.

I know I share a lot of songs, but being a musician they really speak to my heart and give me sooo much encouragement to hold onto my faith when life is just too much. Somewhere in all this pain and suffering there is much greater joy coming. I will share more updates on Cooper as they come. We are so grateful for your prayers!



If you like the song, you'll love to hear the story behind it. We have to trust that whatever God is doing in our life right now is for a greater good. And it is simply just that. We have no other choice.