Cheeks Magee is getting her heart fixed!

Let me start off by saying that this post will only be of interest to those of you who REALLY care about what's going on with Noah. It's going to be long-winded, so if you're just mildly interested, you may wanna turn back now! :)

When Noah was born and our pediatrician came to the hospital to do her newborn screening, he noticed that she had a mild heart murmur. We ended up staying at the hospital for almost 4 days while she was poked and prodded by various specialists. The verdict? Noah has what is known as a VSD (or Ventricular Septal Defect). A VSD is basically an opening (or hole) in the wall (septum) that separates the two ventricles in the heart. VSDs are actually quite common in newborns, so we were told that there was a good chance it would close up on its own with no medical intervention (as is the case with most babies). We began seeing a pediatric cardiologist regularly so he could monitor the size of the hole. Upon further investigation, he discovered that Noah's VSD was highly abnormal. While it was a VERY tiny hole, it was positioned directly beneath the aortic valve instead of further down on the septum. As you can see in the diagram, a normal VSD can be quite large and is usually somewhere in the middle of the septum.

Because Noah wasn't experiencing any side effects, the doctor concluded that we could take a "wait and see" approach, with annual visits to the cardiologist being all that was necessary. Since the hole was so tiny, we were very hopeful that it would close on it's own....

Fast forward to Noah's 2nd birthday and it was time for her annual cardiology appointment. The echocardiogram revealed that the hole was still there and was now affecting the performance of the aortic valve due to their close proximity. We were told that surgery was our only option and that, based on the surgeon's recommendations, it could happen any time in the next two years. If we were to wait longer than that, the VSD could cause significant damage to the valve which would require a much more complicated surgery. So off we went to meet with the surgeon! Based on Noah's size (let's face it, she's huge), the surgeon said we could do the procedure now! I was so happy to hear that...I'm not very good at waiting for things. I can't imagine having that cloud looming over my head for months and months! We went ahead and scheduled the surgery for December 20th of this year. *Side note: The surgeon informed us that Noah's particular type of VSD is almost unheard of in the caucasian population. It is most commonly found in.....ASIANS! Maybe we need to check our family tree?!

As far as heart surgeries go, this one is fairly simple. However, it's also pretty gruesome. Many VSDs can be closed by inserting a probe/tiny tools up through the patient's leg/groin area. Due to the unusual location of Noah's VSD, that is sadly not an option for us. The procedure will go something like this....

First they will put her to sleep and insert a breathing tube as well as a a tiny probe that will ultrasound her heart. Next they will make a 3-4 inch incision in her chest, cutting through the skin, muscle, and eventually her sternum. Then they will "put her heart to sleep"...those were the surgeon's words so I'm thinking that's just a nicer way of saying "stop her heart" (but I could be wrong). A tiny patch will be sewn into the hole and they'll close her back up. The whole process should take about an hour. Also, because she is so young, it is likely that she will need a blood transfusion. After surgery, we will spend about a week in Intensive Care (the surgery is at Phoenix Children's Hospital). Christmas in the hospital sure will be an interesting experience! Once she is released, I will have to keep from immersing her in water for 6 weeks. So basically, she's gonna stink for a while. Hahaha! I'm sure I'll get creative. :)

The Friday before the surgery we will go to the hospital to do pre-surgery testing (x-rays, EKG, blood work, etc.) We've been told that if Noah even has so much as a sniffle, they will have to re-schedule her surgery. So, from now until then, we are basically hermits. No church (the nursery is a breeding ground for cold/flu), parties, or contact with kids (other than Ike). Luckily, the surgery is scheduled over Christmas break, so my entire family will be home and available to help us with Ike. Poor little guy won't get to spend his first Christmas with us...I'm sure he'll be scarred for life. ;)

I know that December 20th will probably be the scariest day of my life. But, surprisingly, I'm pretty much at peace about it. My time at PCH has taught me that we are VERY blessed. Noah does not have cancer. She doesn't have a debilitating disease or malformation. Her brain functions properly. Her problem is fixable. She will be a normal child with no limitations in life. Our surgeon said that the risk of complications from this procedure is ONE PERCENT. Praise God that this is the 21st century and we live in this wonderful country! But you know, even if complications do arise, that doesn't change who God is. Noah is His. We're just her earthly babysitters...and we're so thankful for that.

I'm planning on keeping everyone updated during and after her surgery through facebook and will also be tweeting photos and info on Noah's twitter feed (@CheeksMagee). Until then, we hope everyone has a wonderful holiday this year...MERRY CHRISTMAS!

Ike & Noah Update

What a month it has been! I finally started Ike on solids (I was being lazy...bottle feeding is so much easier!) So far he seems to like everything, but he's still not quite sure what to do with his tongue. Needless to say there's a lot of cleanup involved. Ike is also the proud owner of his first tooth! It appeared at age 6 months...right on schedule! As far as Ike's health is concerned, we have good news to report! At his last visit with the neurologist, she informed us that his soft spot is finally starting to shrink. His head is still on the large side, but it is following the growth curve and is also rounding out nicely. Now, instead of visits every 6 weeks, he only has to go once every 3 months! This is good for my sanity as well as our family wallet! :)

Noah's health update is, unfortunately, not as positive. She had her annual echocardiogram (basically an ultrasound of the heart) this month and the hole in her heart (a.k.a. "ventricular septal defect") has not shrunk in size. This means that she will definitely need surgery. Our cardiologist has referred us to a surgeon and we will be meeting with him on December 3rd. It is pretty much up to him when he wants to perform the surgery. It could be some time in December, or maybe not until she's closer to age 4. Since her condition is asymptomatic, it doesn't need to be rushed, but as a mom, I'd rather just get it over with so I don't have to think about it anymore. The waiting is the worst part! Other than that, Cheeks Magee is doing great. She's getting to be quite the artist. Her coloring projects are definitely good enough for the Museum of Modern Art...have you seen the crap they put in there? Good grief!

Despite the disappointing news about Noah, we have a lot to be thankful for this holiday season. This time three years ago we were recovering from our second consecutive miscarriage and in and out of specialists' offices. We weren't sure if we would ever be able to have children of our own. Who would've guessed that 3 years later we would have two little rugrats? Hey, I'll take a big-headed son and a daughter with a hole in her heart over no kids at all any day!

Happy Thanksgiving everyone!

Halloween Bloopers!

As anyone who has ever tried to take pictures of children knows, it is very difficult to get that "perfect shot." In fact, I'm not even sure the "perfect shot" actually exists! But, I think that's what gives the photos of our children their character...the imperfections of life captured at a specific moment in time (that you can look back and laugh about later!) With that having been said, here are the Taylor family Halloween picture "outtakes"...

Happy Halloween everyone!

I call this one "The Hitler"...

I don't know what they're both chewing on, but it must be tasty!

Ike really needs to work on his arm control (or maybe he knows exactly what he's doing)...

Noah's not a fan of sharing her mustard...

Finally, a semi-normal picture! Well, as normal as kids dressed up as meat can possibly look...

Happy 1/3rd Birthday Ike!

Ike had his 4 month check-up at the doctor yesterday and the verdict is in....he's gigantic. Surprisingly, in terms of percentages, Ike's head is actually the smallest thing about him! He's in the 100th percentile for height (27 1/4 inches), the 95th percentile for weight (17 lbs, 13 oz), and only the 90th percentile for head circumference (17.5 inches!) He was very good for the doctor, only cried for a minute after his shots, and was even nice enough to bring a Care Bear sticker home to give to his sister. What a kid! :) Here are some of Ike's 4 month pics that I took today...

A Nursery For Heaven

I've been thinking about prayer a lot lately. After having a discussion with my dad about it, he let me borrow his book of old Puritan prayers a few weeks ago. I was immediately drawn to a prayer called "The Family," and a particular passage really spoke to me...

'Sanctify and prosper my domestic devotion, instruction, discipline, and example, that my house may be a nursery for heaven.'

Wow! I'd never thought of it that way before. My home...a nursery for heaven? That's a HUGE responsibility, but it's also a wonderful blessing.

Who would've guessed heaven's nursery is an ugly mint green house in central Phoenix? ;)

Nazi Mom - 1: Baby Helmet Manufacturers - 0

Yesterday was Ike's first follow up visit with the neurologist. What a relief! His torticollis is gone, so no more neck therapy! This makes my life a LOT easier. Also, the doctor said that his head is rounding out nicely so he won't need that 3,000 dollar helmet!!! There are some in my family who have resorted to calling me "Nazi mom" because I tend to be very strict about certain things with the kids. Well, as Jordan mentioned to the doctor, this time my Nazi mom qualities paid off! I was religious about keeping Ike off the back of his head (except for nighttime sleeping, diaper changes, and the occasional photo op), and wouldn't you know, I just saved our family 3 grand. Anyway, the doctor said that while Ike's head is still in the 95th percentile for growth, so is the rest of his body...so she's not going to order another ultrasound yet. She is still concerned about the size of his soft spot (it's very large), but based on his progress, she is extending the time between follow up visits to every 6 weeks! Thank you Jesus!

Foto Friday! :)

I can't believe it's already Friday again! Here is my "thought" for the weekend:

"God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain." - C.S. Lewis

Bieber Fever!

It's a fact: little Cheeks Magee has "Beiber Fever!" She even copies his hairstyle (see pictures below). So naturally, when I found out Justin Bieber was going to be performing at the MTV Video Music Awards, I decided I definitely needed to record it so Noah could watch it later. There was no way I was letting her watch it live...even though Bieber's music is clean, I wouldn't put it past MTV to throw in something raunchy. Luckily, it was a really cute performance and Noah LOVED it!

Here is Noah's rendition of Justin Bieber's "Baby"...

Foto Friday!

Here are some of my latest pics of the kiddos...happy weekend everyone!

Moey is obsessed with water...making Noah's bathtime one of his favorite times of the day!

Small Victories

These days, I relish the seemingly insignificant accomplishments in Ike's young life. We were told that because of his ever-expanding head size, he would most likely be behind other babies his age in the area of motor skill development. "His neck is too weak to hold up that melon," the doctor said. Well, this weekend, Ike proved that he's a little go-getter! I couldn't believe what I was seeing when, after getting fed up with laying on his stomach, Ike lifted up his big ol' dome and flipped himself right over to his back! After referring to Noah's baby book, I found that, when it comes to this particular skill, Ike beat Noah by 4 days. I guess he just couldn't stand the thought of losing to a girl.

Fun With Body Parts!

My kids spend a lot of time wearing nothing but diapers. We don't get out much and I HATE doing laundry, so I've found a system that works for us...clothing optional. Noah's increasing curiosity about anything and everything is making me rethink my no clothes policy. A few weeks ago, Noah was admiring her little brother (or plotting his demise, who knows), when she casually pointed to those two little round things on his chest and said "Doh?" "Doh" is the word Noah uses when she doesn't know the name of something and would like you to tell her what that something is. I was planning on changing the subject (i.e. "Where's Elmo?" or "Let's sing Jesus Loves Me!") when Jordan flippantly responded, "nipple!" Crap. My daughter is like an elephant...she never forgets. As I gave Jordan dirty looks and he laughed uncontrollably, Noah proceeded to repeat the word nipple about 17 times. Awesome. Fast forward a few days and Jordan is reading Noah a story...he happened to be shirtless at the time (I'm sure you see where this is going.) Noah interrupted him by touching his nipple and proudly saying "Daddy nipple!" What my husband found hilarious only a few days earlier was now very awkward for him...ah, sweet revenge. He told her, "don't touch" and hoped that would be the end of it. Not wanting to disobey, she decided to hold her little index finger about an inch away from the aforementioned body part, look at both of us, and proclaim, "No touch, daddy nipple!" That's my girl! :o)

Waiting Sucks.

What a looooong week! I'll try to give you the shortest version possible, so here goes nothin'. As I noted in a previous post, Ike was scheduled for an ultrasound on Monday. Well, we went...and the doctor called me back 3 hours later to discuss the results. When you get results that quickly, you know things can't be good. Turns out, Ike has excess fluid on his brain (hence the giant head). We were referred to the Phoenix Children's Hospital Neurology Center for further analysis, but of course, we couldn't get in until Friday (today). I can honestly say, those four days were the longest I have ever experienced. Note to self: DO NOT do internet research when you have no idea what you're dealing with...that didn't help my anxiety in the least! Anyway, Jordan and I took Ike to his appointment this morning. In addition to Ike's Plagiocephaly and Torticollis (flat-head and tight neck muscles for the layperson), he has approximately 8 mm of fluid on his brain. Normal levels are around 2-3 mm. The doctor explained that anywhere from 5-10 mm is considered a mild prominence of fluid. However, these fluid levels can change rapidly, so now we have to bring him in every month to be examined. There's a strong possibility that he has what is called "benign subdural of infancy", meaning it will go away on its own by the time he turns 1 (without treatment). If his fluid levels go above 15 mm, he will need brain surgery. They will insert a shunt into his brain and the fluid will drain through a tube that will go from his brain into his abdomen. The shunt will be taken out around age 3. Needless to say, we are praying that he has the benign form. For now, we are doing "physical therapy" and 4 hours of tummy time each day with him at home (to correct the flat-head and neck muscle issues).

So now we find ourselves with a daughter who may need heart surgery (she has a Ventricular Septal Defect...aka tiny hole in her heart that we've known about since she was born) and a son who may need brain surgery. Both kids require monthly/yearly visits to a specialist, and we really don't know when we'll find out what's going to happen with either of them. All we can do is wait. Ugh. Isn't waiting the worst? I remember being a little kid and getting so impatient for the new school year to start...ah the good ol' days.

Well, that's where we're at right now. Just waiting and praying. And if you'd like to help us out in the prayer department, we sure would appreciate it.

A Much Needed Time-Out

Today was WONDERFUL! My sister was kind enough to come pick up Noah and take her to my parents' house ALL DAY!!!! I like to think of it as a sort of "time-out" for me. Ike is very easy, so I was able to get a ton of stuff done. I'm even cooking dinner tonight! I know, normal people do that all the time, but I'm not normal. This has been a rough week so far (I'll elaborate later), and I really needed this. But now I miss my little Cheeks Magee, so I'll be happy to have her home this evening. FYI, this picture of Noah sitting in the corner was taken during an actual time-out...she spends a lot of time there these days. :)

the little things

Jordan's friend's wife was rushed to the hospital a couple nights ago. It looks like she's going to be ok, but it was a scary day for their family. Jordan and I were both praying for her and it looks like God has answered those prayers. It's nice to know that God cares about the big things in life. I think we expect Him to...I mean, He's God! That's His job, right? But what about the little things? I'm not talking about hangnails or forgetting to DVR your favorite show. I'm talking about those things that aren't just tiny annoyances, but also aren't astronomical on the "God scale." For instance...

This summer has been one of those summers. You know, when everything that can go wrong seems to...and all at once! First, our dog Layla had to have expensive x-rays because she'd been limping. Turns out she has hip displasia and will be on medication for the rest of her life. Wonderful. Then, our air conditioner started leaking water into our bedroom closet. Lovely. Next, our exterminator found evidence of termites, so there went 600 bones for termite treatment. Perfect. Now, as I mentioned in my last post, Ike has to have a head ultrasound and will possibly need to be fitted for a helmet (which is apparently not covered by insurance and can cost between 2 and 3 grand!!!) FANTASTIC! Finally, today, after Jordan came home from work, he decided to go to the gym...and wouldn't you know, his car wouldn't start. The engine was making funny noises, but all of the interior lights and buttons were working, so it couldn't be the battery, right? Well, I decided that, even though car trouble seemed like one of those "little things" (especially compared to what Jordan's friend's family was going through), it was something worth praying about. So I did. Jordan went back outside and decided to try to give his car a jump with my car. Praise the Lord, it WORKED!!! Yep, God does care about the little things...we just need to have faith and let Him prove it every once in a while.

My flat-headed blue-eyed son...

Today was Ike's 2 month well-check! As we suspected, he's a BIG boy! He's not as fat as I thought he was (only 13 lbs 4 oz), but he's already 25 inches long (95th percentile!) After the nurse did his measurements, the doctor came in and immediately asked me about his head...uh oh. Apparently, Ike has what is known as "positional plagiocephaly" (aka "flat-head syndrome"). Basically, Ike is such a good sleeper that his head has flattened in the back due to the constant pressure. Now we get to take him to Phoenix Children's Hospital to have an ultrasound on his giant flat head. In the mean time, we have to keep Ike off of the back of his head whenever possible. This means a lot of tummy time (which he hates), and sitting in the Bumbo (which is difficult because he still can't hold up his own head). After two months, if his head isn't showing major improvement, he gets fitted for a helmet. Needless to say, I spent the majority of this afternoon/evening bending and twisting Ike like my old Gumby doll I had when I was a kid...anything to keep him off the back of his head. It's amazing what lengths you'll go to when you picture your kid in the nursery wearing a giant helmet while all the other babies point and laugh. No, I refuse to let my kid be the nursery nerd. Anyway, we've had nothing but good experiences with the staff at PCH (Noah goes there to see her cardiologist), so I'm sure they will take good care of him. Even though the news about Ike's head was rather discouraging, the appointment did end on a good note. According to the doctor, I have a blue-eyed son! Jordan and I both have blue-eyed people in our families, but we both have brown eyes (his also have a tiny bit of green in them). Ike's eyes are very blue, but I thought for sure they would morph into brown as he got older. Not so, says the doctor! I am so excited! I've always wanted a blue-eyed baby, but I didn't think it was even possible! That God, He's a tricky one!

What did I get myself into?

In the spring of 2005 I was a single college graduate with no responsibilities. Fast forward five years and I'm a married mother of two with three dogs, two cars, a house and what the E.R. doctor called "ocular migraines." What happened? Well...life happened. And I think it's pretty darn awesome. I'm not very good at keeping a journal, so I figured rather than waste money on a notebook, I'd make my husband the accountant proud and go the electronic route, for free! I hope to post some of my photography as well as random thoughts and stories about life in the Taylor household. It'll probably end up looking like Andy Rooney and Jack Handey had a love child who happened to spit up on my computer. I apologize in advance to anyone and everyone who will undoubtedly be offended at some point by something I put on here. You've been warned. :o)