wordless wednesday

Heart Cath yesterday

The famous Dr. Tom Jones...he's very renowned for cath intervention and so kind too. This was Maddie's third cath procedure and Jones has performed them all. The photo was taken right before we left last night. She was quite puffy around the eyes from all the IV fluids, today she's looking back to normal...many wet diapers later :)

We arrived at the hospital bright and early to check-in, she was scheduled to go into the cath lab by 8:00 and 2 hours later, she finally went back! There were camera difficulties in the lab and the technician that was supposed to be there to fix it was stuck in traffic, so this held up the show. Maddie did great waiting in the pre-op area by taking a little snooze, played with my phone and enjoyed lots of cuddling before her procedure (we did too).
I was able to go back with her into the cath lab (all scrubbed up but didn't get a picture) and help ease her into getting put under...nothing about putting a 1 year old out is easy! She fought the gas mask and when I left, she was in a light sleep with her legs still kicking around! It was neat to see the cath lab and watch the nurses and anesthesiologists do their thing, but a little hard for mommy to hold down her girl against her will. I always wonder what she's thinking as I'm holding her down and saying to her, "it's ok...I know...shhh-shhh...be a good girl...mommy loves you...honey, I'm sorry..." But I do hope there's some comfort when the last face she sees is mine as she drifts off into la-la land.

The cath took 3 hours and Dr. Jones ended up doing a cardiac collaterization with embolization of collateral veins with coils. Whoo, that's a mouthful! In other words, he put in 4 metal coils to clot off some unwanted veins she's created. She had developed some large collaterals off of her innominate vein that were robbing blood and causing her sats to go down. These collaterals that she formed are useless. With her heart's anatomy, her body formed them to get more oxygenated blood to her extremities/lower half of her body since it's oxygen deprived. Her body is trying to "fix" her heart problems yet only causes trouble by doing this. Her sats in the cath lab were 74-76 and when she was finished with the procedure, veins all coiled up in tiny metal springs, her sats were up to 81-84! So coiling off these unwanted vessels helped out!

Here's a picture of one of the collaterals off to the right of the innominate vein...it swirls around, looping and stealing that precious oxygenated blood just received from the lungs. Here's a picture of the coils on x-ray, they'll stay in her forever. The long, skinny 1-inch looking lines are the wires holding her sternum together from her two surgeries.

Dr. Jones was also able to get a good look around her heart (he made 3 entry points/puncture sites: neck, arm/shoulder area, and her groin) and he gave us a wonderful report! Her pulmonary arteries have grown, heart function and pressures looked great, and her Glenn site is fine too! Her heart likes the Glenn flow :) There was a little narrowing at the site of the SVC and the PA but with her future Fontan surgery, the IVC conduit will be sewn into that spot and should take care of the problem. He said that she really looks wonderful and this procedure should buy us some time. In his "seasoned opinion" (his words not mine) Dr. Jones feels that completing the Fontan is better the bigger she is. He feels like the Glenn should be sufficient enough until she's 40+ pounds! We've been thinking her last surgery will be when she hits 30 lbs, so it looks like we may have a longer wait! It's actually a bit of a relief. Miss Maddie is 9.2 kilos, which is just 20.24 lbs...she's gonna have to double in size before that surgery so she may be 4 or 5 when she has her Fontan. It's all on a "need" basis...when she gets bluer, sats stay down, more winded with activity, and overall tired, these will be the indicators that it's time for her Fontan surgery. Dr. Jones' report of Maddie was so nice for my mommy heart to hear. I always wonder what's going on in that little heart of hers and after yesterday's cath, a lot of my anxieties are put to ease. If she looks and acts great, she's probably doing great. Thank you Lord.

This picture shows where the IVC conduit (artificial tube) will be sewn in at Fontan time. The SVC (Superior Vena Cava) is what was sewn to her pulmonary artery from the Glenn, it's her own tissue, not a tube. The branches off of the RPA and LPA go out to the lungs.

Luckily, I was able to go back with her in the first phase recovery room too and she was the feistiest kiddo in there! Her LOUD cry was hoarse (breathing tube causes that) and there was no making that girl happy. I do love this side of her though and feel that it's one factor of why she's done so well with her half-heart. She kept her swollen, puffy eyes on the nurse at all times and screamed when she came near. Poor baby... and yes, we did come home last night! Dr. Jones felt like she looked great after her 4 hours in recovery and didn't see a need for her to stay overnight in the hospital. Yay!!!

Our baby heart friend, Mia, had clinic yesterday so she and Mimi came and sat with us in our recovery room after their appointments. Man, I just love them!!! Mia looks so great and is the smiliest baby I've ever been around. Mimi is hilarious and like her daughter, can brighten anyones day. Time really flew by for us once they arrived.

Since we were starving and Maddie was geared up for her fav mac & cheese, we went out to dinner before our 3 hour drive back home. Mimi and Mia joined us as well and Susie and Teagan too(they were in town for an appt. today). It was a fabulous way to end a long but very happy day :)

Thanks for all of your prayers and kind words. Maddie is sure a blessed little girl!

Here's a short video that explains what a heart catheterization is: Click here to watch.

We're home :) More on Maddie's cath report tomorrow...she's doing great and her sats are up already. She's a trooper!!!

Cath tomorrow

Maddie's cath is scheduled for first case tomorrow morning. We're to report to surgery by 7:15 am, feeds will be cut off at midnight and luckily, she can have clear fluids until 4 am so we're crossing our fingers this goes smoothly!!! It's planned as just a "maintenance" sort of thing to check her pulmonary arteries, Glenn site, etc... and to see why she prefers satting in the 70's. She's doing great, is healthy and should get through this with ease. Please say an extra prayer for little miss tonight...

trece meses!

13 months!

Our bathing beauty in her second bath of the day. She absolutely loves being outside and in the dirt pile with her brothers...it's a good thing she lives on a farm. As with all of my babes, the lawn mower has been a big hit and Maddie is no exception to this. She's picking up new words everyday and uses much intonation when she speaks. It's so cute. Her latest words are: "giocle, giocle" (tickle, tickle), "otie" (doggy), she moo's which is "mmmm", she quickly says "huh" (uh-huh) even when the question being asked isn't finished, and she's now starting to use yes and no head shakes in context (especially when she's finished eating...that one is definitely a NO head shake 100% of the time). She's not a great performer "on-demand", it's all on Maddie's terms. She's a really cute bobble head when she hears music and loves to imitate our actions and noises. The best is her Purell hand sanitizing impression...it's very vigorous and serious business! Her last Synagis shot was this month (yippee!) and she hit 19 lbs. 13 oz. on the scale that day! Pretty impressive when exactly a year ago, she weighed 6 lbs. 13 oz.! And for my current favorite expression of hers: the scrunchy face/snorty nose sound...pretty cute, huh!?!

Happy Easter!

We were on the go this Easter...church by 8 am in Moses Lake (yes, it's a 45 minute drive and we made it on time!), then to Papa and Grandma Allred's for lunch, and our final destination was Nany and Ba's for supper. Needless to say, our little bunnies were wiped out at the end of the day but we thoroughly enjoyed not spending our Easter in a hospital this year!!!

Grandma had a fun project for the kids...planting flowers! Maddie and Jill missed out on the photo op.

Nany bought her this Easter dress for her birthday...she looked so adorable!!!

Kylie and Maddie playing together...they're really starting to interact with each other instead of just doing "stare-downs"!

Maddie meets a Congressman!

Today we had a unique opportunity to personally meet and visit with Representative Doc Hastings, Washington's 4th District Congressman! Bryan received a phone call this morning from a business associate that Congressman Hastings would be stopping by their company on his way through. Of course they planned on discussing ag-related subjects...until I quickly reminded Bryan that this was the perfect opportunity to corner him on the Congenital Heart Futures Act!!! (More information about this bill below.)

So, Maddie and I tagged along and had the wonderful chance to bring awareness to this important piece of legislation. I was able to hand-deliver my letter (that I also emailed to him and our Senators a couple of weeks ago...shocker, he hadn't read it but was sure a staff member had) and I stressed the importance of this bill and that CHD's need funding! He was a good listener and his aide passed on some valuable contact information. I do hope when he's in session and H.R. 1570 hits the floor for a vote, Maddie's sweet little face will pop into his head!!! It was a great opportunity and I enjoyed taking some action.

"Congenital Heart Futures Act" Introduced to Congress
For the first time in U.S. history, Congress is addressing the needs (present and future) of congenital heart kids and adults. The legislation's purpose is two-fold. First, it will "...increase research surrounding the cause, diagnosis, treatment, prevention, long-term outcomes and barriers to care for all CHD patients." Secondly, it seeks to "promote CHD awareness by creating a comprehensive public education and awareness campaign."

Increased research, awareness and funding for the 1.8 million people like Maddie fighting congenital heart disease? YES! Join us and help get this legislation passed. Please email your Senators and Congressman and ask them to become co-sponsors of this legislation. Here's how:

Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.

Draft your email - Here is a template to get you started.

Dear [Lawmaker name here]

I am writing as a member/supporter of the The Congenital Heart Information Network to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

[Insert 2-3 sentences saying why you care – some examples:

From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]

Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.

Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress. That's all there is to it! Easy and potentially life-changing for so many children and families. Thank you!!!

Caden the critic

Cade has really been coming up with some good ones lately...he's quite the little man these days with a very BIG opinion! Here's just a few comments he's made this past week that I've actually remembered to write down.

This morning before leaving for preschool...
Me: "Why do you have all of those batteries and what are you doing with them?"
C: "Jace told me I could have them" (He's slick to blame this on Jace)
Me: "Well, Jace is not the boss, I am"
C: "No mom, you are not the boss, you are just the mom." (Totally how I feel!)

After we'd all gotten ready before heading out to pizza for my birthday...
C: "Hey mom, you look kinda pretty"
Me: "Thanks Caders, that's so nice of you"
C: "But mom, I look gorgeous!"

As we were watching Dancing with the Stars the other night he commented on Edyta (LT's partner)
C: "Oooooh, she's HOT!"

Where did he come up with this one??? First I was thinking that he meant hot in the literal sense due to the shininess of her barely covered sweaty bod, but then he saw a Bratz doll commercial during cartoons the next morning and he commented that the doll looked "hot"! Uh oh, his taste in women...he already equates HOT with gaudy outfits that are barely there and too much eye-makeup! Bratz Dolls=Edyta from Dancing with the Stars, pretty good observation on his part! Our critic keeps us laughing and I'm afraid we may have a ladies man on our hands!

Attitude

"I believe the single most significant decision I can make on a day to day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failure, fame or pain, what other people think of me or say about me, my circumstances or my position. ATTITUDE is that single string that keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right there is no barrier too high, no valley too deep, no dream too extreme, or no challenge too great. We have the right to choose our own attitude, bitterness or forgiveness, give-up or go on, hatred or hope, determination to endure or the paralysis of self pity. Life is 10% what happens to us and 90% how we respond to it." ~Author Unknown

I have had this quote (thanks to my mom) on our refrigerator for the past year. It is Sus' favorite, she has "preached" this one to me and my brothers for years. I do think it says it all...our choice of ATTITUDE is a very powerful decision we make each and every day, even on a minute to minute basis. There are times when I allow fear of "what could happen" with Maddie get the best of me. I tend to borrow trouble and look too far ahead on what is to come, what obstacles she'll face, and what she won't be able to do. As her mother, I often worry about "messing" her up since I'll always have her HEART looming over every decision I make in raising her. It's something you just don't forget about. I tend to take it into account with every little thing. I'm learning that this only ruins right now and the precious time we have together. So this quote is a great reminder for me when I need to quickly redirect my thoughts, emotions, and change my attitude. We only have right now. We all have trials here on earth and there is always someone with a bigger trial than you. These facts always put things back into perspective for me. I am so grateful for the heart parents before me, their wonderful advice, tips and outlooks on raising a child with a CHD. I so enjoy reading the blogs of those who've "paved the way" for my daughter, they are really the pioneers in the heart world.

Paul Cardall's blog is one that I love and offers so much hope to families dealing with CHD's. He's just an amazing person. It's linked to ours under Kindred Hearts, and I strongly suggest that if you have some time, please take a look at his journey and this article, click here to read it. He's waiting for a new heart, has lived with HRHS for 36 years, and reading his parents and his wife's point of view in the article was truly emotional and inspiring for me. Paul and his family are wonderful examples of how powerful our attitudes really are when we have the determination to endure, even when we find ourselves in the valley.