The Story of Our Heart Baby

Braden (L) & Brenden (R)

Brenden Ashton was born on November 24, 1993 at 12:10 AM weighing in at 5 lbs and 17" long. His identical twin brother, Braden Aloysius, was born at 12:11 AM and weighed in at 4 lbs 11 oz and 18" long. Both of these amazing, and feisty, miracles gestated skin to skin as Monoamniotic/Monochorionic, or MOMO, twins.

For 35 weeks they created intriquite knots in each others umbilical cords (I'll find the photo and post it one day), had amazing wrestling matches, sucked on each others hands (and feet!) and gave each other black eyes as they fought for wiggle room.

Brenden loved to kick Braden up into my ribs and, wouldn't you know it, just as Brenden tired of playing trampoline on my bladder, Braden would issue a swift knee to the chin and the wrestling match would start once again.

Little did we know that they weren't exactly "identical". Brenden was hiding a little secret that threatened his life. In these photo's you would never know that he was sick and we didn't know how sick he really was.

After eleven and a half years of not knowing what was wrong with our son, wondering if it was actually me (his mom) who was sick, second guessing my instincts and being told "He has asthma" over and over again, our son was diagnosed with a rare congenital heart defect known as a Double Aortic Arch or Vascular Ring.

Brenden, our oldest son (by one minute), seemed to have every test, illness, medication and diagnosis known. He received two sweat tests because the pediatrician was sure he had Cystic Fibrosis. From just a few weeks on, our little guy would wheeze, choke on food, throw up, cough and have stridor. Nothing helped him. Without going into too much detail, thus making this blog way too long, here is a list of things we were told from birth to diagnosis:

We were told Brenden had/Brenden was given:

*Milk Allergy (infancy) and was put on Soy formula and then Nutrimagen.

*Given a scope and told he had a narrow esophogus and he would grow out of it by 1 year.

*Pre-diagnosed with Asthma, but told he was too young to really give a diagnosis.

*Given gobs of medications for asthma.

*Allergy testing

*Hospitialized with pneumonia at age 2.

*ER and InstaCare visits for steroids and nebulizer treatments.

*Two sweat tests to rule out Cystic Fibrosis.

*Enough x-rays to light up California and even one where his twin brother helped out.

*A distraught mother who knew something was wrong, but nobody listened to her.

*Coughing fits that would last hours and usually ended in vomiting.

*Choking on small pieces of food, but we thought he wasn't chewing properly. After repeating this meal after meal we were upset and would get upset with Brenden for not chewing his food. I still feel horrible for being angry/scared/frustrated with him at the dinner table. Poor guy!

*Adnoidectomy

*ENT visits

*Strangers who thought he was "really sick and should be at home!" Uh, thanks.

*Teachers who called numerous times a year in regards to Brenden's coughing fits.

*Many missed weeks of school.

*Had this virus and that virus.

*Bronchitis

*Chronic Bronchitis

*Sinusitis

*Chronic Sinusitis

*Asthma

*Seasonal Asthma

*Lung sensitivity to cold air

*"He probably makes too much mucous." -PCMC ER Dr. when asked "If you can't find anything wrong with him, then why has he sounded this way since birth?".

That last one (in bold) was actually my final straw. From age 8-11, I had resigned myself to the fact that Brenden suffered from asthma, even though I really didn't feel right about it. Nobody listened to me and everyone shrugged off his symptoms. I figured I was the crazy one. Around 11 years of age, Brenden began suffering from unexplained migraines and I rushed him to the children's hospital to be seen. They made him put a mask on because he sounded so sick. After a CT scan of his sinuses and an x-ray of his lungs, we were told nothing was wrong. I then went home, bypassed our now ex-pediatrician and called what I thought was the PCMC neurology department and scheduled an appointment. Of course it was three months out, but I was determined to find some answers.

A couple months later I received a packet in the mail from PCMC with papers to fill out for his upcoming appointment. I was a bit dissapointed when the paperwork was for the Pulmonology department, but figured it was better to be seen by someone now than to cancel and have to wait more.

On July 27, 2005 Brenden and I went up to the hospital for his appointment. I spoke with the nurse about his history, answered tons of questions, told her I just wanted some answers. Brenden was given PFT testing and a few other things. When we finally met Dr. U we answered his questions and I told him about Brenden. He told me that Brenden had "Seasonal Asthma" and tears began to flow down my cheeks as I struggled not to sob at his feet. Dr. U asked me what he could do to make me feel better about this appointment. I looked at him and pleaded with him to just "Start over. Do all the tests that you would do if Brenden had never seen anyone about the symptoms I described."

You see, on July 27, Brenden was not suffering from a cold and he was not sick (amazingly!) that day. The stridor was not heard and he was not wheezing. A great day for him to be stuck in the hospital, eh? The only test that puzzled Dr. U was the Pulmonary Function Testing (PFT). Brenden had pretty low levels to begin with, but when given puffs of Albuterol (the drug he had been on since he was a toddler) his levels would become worse. Dr. U said that's unusual as Albuterol opens up the airways, but on Brenden it was closing them and making it worse.

Dr. U wrote Brenden three prescriptions. One was for blood work, one for a CT scan of his lungs and one for a sleep study. The sleep study would need to be scheduled for a later date, but the other two were to be done immediately. I was shocked, to say the least. I was told to bring Brenden back in the fall (when he got his first cold). We said goodbye and I thanked him for the tests and went on our way. Looking at those two prescriptions I remember asking myself, "Which one should we do first?"

We found our way to radiology, signed in and waited. Brenden and I were taken to a large room and ushered past a small control room towards the big CT machine. I sat in a chair against the wall and was draped with a heavy vest. Brenden was such a trooper and hopped up on the table. They explained some things to us, administered the contrast into his veins and then we hear this loud whirring sound. My eyes are fixed on my son and this thing engulfing his tiny body and whirling around his body. I wanted them to find something and kept repeating softly, "Please find something. Please find something."

Photos taken during his first post-op visit.

I had to get a photo of the machine that was not blind to a mother's plea.

Just three minutes later the whirring slowed down and stopped. I was puzzled because it was so short. I looked at my son trying so hard to stay still even though the contrast was coarsing through his body and he felt like he was burning, then I glanced into the control room to witness a bunch of people in white coats huddled over a monitor and Dr. U was right there with them. My first thought was, "Why is Dr. U there? We said goodbye.". I looked at Brenden, then the nurse and suddenly (in my peripheral vision) I saw Dr. U walking towards me. I remained seated, too numb to move or speak at what was being said. My mind was racing, trying to remember where the aorta was from and as Dr. U went on, I felt like I was having an out of body experience. I was hearing what he was saying and I could see him, but my mind was still on the aorta. Within seconds I remembered it was the heart. The heart? What? We're not here for his heart. There must be some mistake. They were viewing his lungs, not his heart. These are the things that went through my mind. At some point, my mind and body were once again in sync and I was asking questions instead of nodding my head.

On August 22, 2005, our oldest son, Brenden, was admitted to Primary Children's Medical Center for an operation that would save his life. The surgeon Dr. K, said that when he made the cut to release the esophogus and trachea, they popped out like a tightly wound spring. They were finally free. He also noted that Brenden didn't have a dominate side where one would be larger than the other. Brenden had two narrow sides, which made his case a bit more complicated. He had tracheomalacia (as well as other issues) and they were not sure if he would get better after 11.5 years of constriction. *Edited to add* Brenden also has a PFO that they did not feel comfortable fixing at the same time they operated on the DAA. He still has a noticeable heart murmur as well. A neurologist at PCMC told us last year that PFO's do not cause migraines, though everything I get my hands on says the opposite. We aren't sure what the next step will be as far as the PFO goes.

Brenden was in the PICU for a little over 24 hours until he was moved to the cardiac floor. He and I stayed there for 5 days.

He rested....

And he played....

But, mostly, he rested.

When Brenden was discharged, we set up a temporary bedroom for him right in our living room. He stayed there for a couple weeks. After the first week it was hard keeping him down. He grew stronger each day and went back to playing ice hockey after October 28th.

Despite the fact that he still has tracheomalacia, coughing fits when he's sick or running around, susceptible to getting colds/flu, incision site pain and occasionally has trouble swallowing, he says it's no where near as bad as how he felt before.

Thank You Jesus for sending us to Dr. U. Thank You for everyone who prayed for our son, for those who helped us in every way possible. You know who you are...Thank You!

And a special note to Brenden......

Brenden,

Happy 4 years post-surgery!!! I want you to know that I worried about you from day one. I knew something was wrong and it made mommy so angry when people didn't believe me. I felt like a failure not being able to help you when you were struggling to breathe and to eat. You were so brave and coped with the illnesses, coughing and breathing well . Your strength and courage helped mom, dad, gamma and everyone who loves you get through that time. You amaze me and I just wanted you to know how proud I am of you. You have become such an amazing young man and I pray that you'll continue to deepen your relationship with Christ and develop God-centered friendships as you traverse these next few years. I hope you know how much you (and all your siblings) mean to your dad and I. We are not perfect parents and even though we allow our frustrations and anger to get the best of us, nag you to clean your room (bathrooms, kitchen, mow the lawn, etc., etc.,) I hope you know that we LOVE you so very much.

All my love,

Mom

Toyless

At some point, during our busy weekend, Caleb (our 7 year old) decided that he wanted to sell all of his toys (except the Lego's, of course!) so that he could buy more Lego's. He has tried this several times before, but I've usually persuaded him not to. Caleb is not easily persuaded, however, and has researched Ebay, Target and Walmart to see how much money he needs to make so that he can buy the Lego's he wants. He even went so far as to price his used toys so that if all of them sold, he would have enough money. For sure, his math skills come from Daddy and well, we all know where his organizational and thinking ahead skills come from, right?

Right!?

I didn't get a photo of his "Toy Sale" table, but I did happen upon this little number.

This sign was made by Casey (our 13 year old) to advertise a (well played with) train table that was dontated to Caleb's cause by a neighbor who was nesting. She gave explicit instuctions that "She did not want the table back." Thanks neighbor, it's still sitting in our garage, and congrats on your new baby boy! If you didn't catch the sign, here it is again.

Coming from a child who has struggled with reading, writing and putting words into a sentence, I'm very pleased! This is amazing progress for Casey. I will have to talk to him about the value of used items, though. Fifteen dollars for this train table is bordering on "usery".

Semi-Toyless (except for thousands of Lego's and the small fact that nobody bought anything from him), Caleb began finding alternative things to play with. Since mommy and daddy would say no to real knives, no doubt, he found plastic hangers to use as weapons.

Ingenious!

After fifteen years of toys (lots of toys) and spending money on things that would entertain the kids, I wonder why we didn't think of belts and hangars much, much earlier.

International Days

This past weekend was full of back-to-school shopping, an Irish dance performance and doing laundry. It was a busy weekend with gorgeous weather (for the most part).

On Friday evening we shuttled our three dancers across the valley so they could get the crowd jiggin'. We were the first performance for International Days and despite ominous thunder clouds, there was a good sized gathering. The clouds let out a few sprinkles here and there while we were performing, but didn't start to pour until our expensive wigged daughter was safe (and dry) in our car. We even got a free snowcone. Mine was Tiger's Blood and the kids had some sort of suicidal mixture that would make a sane person gag.

Casey showing off his solo Reel. Go Casey!

Seeing as I always seem to post more photo's of Chloe, you know, dancing perfectly. Ahem. I thought I would let you see that she's a real girl, with real talent and she even struggles a little. This is a great photo of Chloe "sitting" that our TCRG sent to Chloe as a visual. I showed her the photo and she groaned, I giggled and then she smiled. She's working hard to straighten those knees. Those darn knees have a mind of their own. If any Irish Dancer's read my blog and want to suggest some techniques that might help her, please leave a comment. Other than that...Chloe and Casey are well on their way to the Prelim level. Proud? You better believe it!

Check out my little guy with his naturally red-headed partner (aka. Red)!

And here they are again, my son and "Red".

Which reminds me...if a blond haired male marries a red haired female, what is the chance they will produce red haired children?

Yes, I am obessed. (You can totally see it, right?)

I love red hair and for good reason. You see, the red-haired popluation is diminishing drastically and while I cannot donate eggs or sperm to help produce more redheads, I can tell every redheaded person I meet how beautiful their hair is and try to coerce my children into marrying natural redheads.

What?! I'm joking! Sheesh.

School, school, school....literally!

Our two middle children, Casey & Chloe, had "Back to School Night" tonight. The charter school hosted a yummy BBQ and the kids were able to meet some of the teachers and see their classrooms. We're new to this school and I am extremely excited for my two who are able to attend. Caleb (our baby) will still be in our local public elementary until a spot opens up for him in the 2nd grade. We hear he's #4 on the sibling list, so not too bad. I do feel bad that he isn't able to start the school year with his siblings and will be alone (without his sister), but he seems to be handling it very well. The office staff has been so patient with him (and me!). Everytime they see us Caleb asks if he can come to school there. They get down on his level and sweetly tell him that they are trying so hard to get him in and will keep trying. I pray every day for him to be accepted, but I know it's all in God's hands and in His timing. I'll try to be patient.

We went back-to-school shopping after the BBQ to gather a few supplies, so naturally, Chloe is off-the-wall deliriously happy and wants to go back to school, like, yesterday. She'll have to wait till next Wednesday though. To pass the time, she's writing her first entry in her journal for school. I think she's going to be "teacher's pet" already starting on what will most likely be her first journal assignment. Haha!

(Taken from my iPhone)

Here she is writing her name on a composition notebook (her journal).

As soon as we arrived home, Chloe was in her bedroom trying on a couple of her uniform outfits. Casey and Chloe can wear navy, white or burgandy shirts, khaki or navy bottoms, uniform color socks and any shoe as long as it has a back and a strap (or ties). In the photo above you can see her wearing another one of her outfits paired with Airwalk "kicks". A less expensive version to Converse...which I love! I refuse for them to go to school in dress pants with fat skater shoes. Maybe it's just me, but I consider Converse style shoes to be classic and can be worn with dress pants or jeans. Very versatile. The brown mary-jane's are Airwalk, too.

(Taken from my iPhone)

Speaking of shoes, I was able to find some really cute shoes for the kids this year that didn't cost me an arm and a leg. Casey, Chloe and Caleb all received a pair of Airwalk "kicks". Casey has a brown pair with some sort of skull or dragon on the side for $13.00, Chloe has the blue pair for $17.99 and Caleb has the black pair for $17.99. Simple and stylish. Chloe also got the brown mary-jane's for $15.00. Payless is having their Buy 1, Get 1 half off promotion and they recently sent out a 20% off coupon in the mail, too. I had to go to 5 different stores to find the right colors/sizes and each time they printed off which store had what I needed, it came with a coupon. The cashier at Payless either took pity on me or was really nice, but he honored both the 20% off mail coupon and another $3.00 off printed coupon. All in all, I paid $39 and some change for all four pairs of shoes! When I went to the final Payless today with my receipts and coupons, he worked his magic and ended up owing me $3.00! I even asked him if he was sure he hadn't made a mistake.

I only have a few more items to purchase for the uniformed kids. Casey needs a couple pairs of uniform pants and they both need brown/black belts, socks, haircuts and a few more school supplies that we couldn't find today. I'll be heading to Target and Office Max tomorrow for the rest. Purchasing all the stuff for our uniformed students has been a little more expensive than normal, but I'm giddy thinking about all the clothes I will not have to buy.

I was able to buy Caleb a few pairs of Old Navy jeans when they were on sale for $10 each. He will not need much (if anything) for school supplies, but I do need to buy him a few polo shirts. Since he'll be starting (hopefully) this year at the charter school, I'm buying him polo shirts to get him used to wearing them. It's a good thing he likes polo shirts! He's rather picky about his clothing (look and feel) and for a seven year old boy, it's driving me nuts! He's more irritated by the feel, than look, so we have to shop around and let him try things on. Being a seven year old boy, he's not really into shopping for anything but LEGO's, so it has been a challenge, to say the least.

As for my older sons, my amazing mom has offered to buy Brenden and Braden (aka The Twins) their school clothing and shoes. They are going to be expensive, but not because they buy expensive things, just because there are two of them. Luckily, one of my twins likes Aeropostle and I LOVE Aeropostle's sale prices! I will be watching the purchases and making sure they make wise choices. They will be going through the closet and discarding anything that is worn out, then taking note of what they really need before we go shopping. Partly because I want them to be more responsible and partly because they have a knack for charming "Gamma" into what they want. Ahem. Anyway, I'm also trying to instill in them the difference in what they need and what they want. There is a big difference, whether they like it or not. With teenagers it's hard and with my mother it's harder. I saved her lots of money in my "New Waver Thrift Store years", but she will not let me forget the $70 dollar Girbaud jeans I just had to have. What a waste! Sorry mom!

The twins will also have some hefty high school fee's this year, too. Approximately $100 each for basic fee's, $100 each for driver's education class and whatever fee's they accumulate with special class fee's (shop, art, drama, sports, etc).

In the spirit of recycling, all of my younger kids will be reusing old backpack's and totes. This will save us over $50 this year alone! Brenden & Braden will need backpack's because they were not allowed to carry any bags in their last school or wear coats in the halls or to classes. It was a rule put in place to keep the students safe. You know, just in case someone decided they wanted to carry a gun (or bomb) to school. In March, we chose to transfer them to a school a few miles from our home. It was a better school than the one in our boundary, but still riddled with gangs. Up until Tuesday evening, I was prepared to register them on Wednesday morning. That is, until my husband suggested we enroll them in a school next to his work. Was he joking? I couldn't believe he even suggested it. It was the first school I attended when we moved to Utah (I was in the old building though) and I've only heard great things about them since the new building was constructed. I couldn't sleep a wink that night because I was so afraid my hopes would be squashed by them not accepting "Out of Bound" students, but when I called first thing the next morning, I was estatic when they scheduled a registration appointment for the following Monday.

In moving them to the High School near my husbands work, they will have a better education and more opportunities for after school sports, etc. It also will make it easier on Rob when he needs to take them to our church (only a few miles away) for worship practice and High School youth service. Having them so close to their dad will also make it easy for him to take them to school and bring them home. They will not be home until when Rob would normally get home, but I hope that they are able to use the time after school to complete homework, etc.

It all sounds pretty complicated and some may wonder why we don't just keep them in our local schools or even homeschool, but while I had felt a huge relief when two of my kids were accepted into the charter school 10 minutes away, I was still torn because my fifteen year old boys were heading to a school that I was settling on (because it was the closest one to us that was better than our boundary school). Ever since Wednesday morning, I've felt a huge weight lift off my shoulders. I'm so relieved!

Not Me! Monday-A humourously splitting recount.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

As for my "Not Me! Monday" post and why I Twittered about a recent emotional meltdown, here you go.....

Sunday morning, just after getting back from a 4 day/3 night business trip, I did not wake up feeling exhausted. I also did not wonder (aloud) if I should just skip church. After hitting the snooze button several times, I did not grumble as I got out of bed.

My 10 year old daughter did not wake up crying that she didn't want to go to church, complain that she didn't know what to wear and didn't keep us waiting in the car while she tried to find a pair of shoes (even though she has a dozen pair). I was not grumpy (and tired) to begin with, so I happily helped her find a cool outfit and did not bark, "Don't even start with me this morning young lady!" as I went to wake up the others.

I did not try on several pairs of pants just to pull out a dirty pair of denim capri's from my suitcase because the other ones did not fit me. I did not want to cry because it was quite obvious that I've gained several pounds.

With five reluctant and tired children, I was not fifteen minutes late for church, did not miss 75% of worship and did not silently wish I was at home...sleeping.

I did cheer up as our pastor began preaching and was thankful that my oldest son was actually taking notes and paying attention. After service, I happily browsed the church bookstore shelves and then the kids and I headed over to another church (where my husband plays worship) so we could encourage him.

After that service, I took my younger three home and waited for my husband and our older sons to return. I wasn't feeling well and started to feel some anxiety creeping in. Shortly after they arrived, I started feeling worse. I wasn't sure why I was feeling anxious, but my heart was starting to beat fast, I was sweating and my mind was racing. I took several deep breaths and rushed to my bedroom to cry. I could feel the anxiety attack coming on and was hoping to force it away with a good cry.

My husband came in and laid next to me not knowing I had been silently weeping. He gently stroked my back and then one of my children came in (I can't recall who) and DID NOT promptly announce that I had a hole in my pants. My husband did not pat my tush and say matter-of-factly, "I know." I, therefore, was not immediately horrified when my hand reached behind me and felt a huge gaping five to six inch split instead of a tiny unnoticeable tear.

I did not begin to sob uncontrollably into my pillow while vivid pictures of me praising God with my hands held high in worship, bending over to look at books on lower shelves and bending over to pick up chocolate muffin crumbs from the sanctuary floor flashed through my already anxious mind.

My daughter did not try to console me by saying, "Mommy, you can't see it when your shirt is over it!" and my husband did not try to help me feel better by telling me that it must have happened after church (the 2nd one) because he would have noticed it. Nevermind the fact that he was up on stage leading worship when I entered the church (from the back...LATE!!) and his back was turned to me when I left. He also did not burst out laughing after calling me "pumpkin" when he realized his not-so-humerous pun. You know, seeing as my panties were ORANGE! Nope...not my sensitive husband.

Calm and collected, I did not have to take something (a medication that I've never had to take before, but prescribed to me for moments like this, I imagine.) so that I could calm down, because the very unfortunate "I don't know when my pants ripped during my very public morning" circumstance did not emotionally push me over the edge. Nope. I handled it all very well and am quite proud of my reaction to such an embarassing experience. ::sigh::

I did, however, wake up in my loving husbands arms two hours later. He held me as I took a much needed nap and I'm grateful that even though splitting ones pants is rather humerous, he understood that it was just something I could not deal with at that particular moment. Despite all the tears of anxiety and embarassment, my loving (and, yes, sensitive husband) made me laugh in the end. Oh, and um, honey? I just wanted to say "Thanks!! You're the best!"

Love,

"Pumpkin"

Business Travel

I haven't been a very good blogger lately. Sorry.

This past week I've been working in and out of town. Since Wednesday I've been in St. George delivering phones. It's been a great experience for me to get away, but I've worked long days and am exhausted at this point. I am excited to go home tomorrow. Right now I am in my hotel room... blogging, when I should be sleeping.

::yawn::

I have a long drive home tomorrow so I do need to get some sleep.

G'night!!!