Gymnastics

What do you do with the child who swings from the rafters?

You put her in gymnastics class.

Jersey #2 does not appear to be cut out for contact sports.  I am not fully clear if it is her personality, or if it is a product of her heart experiences, but she is very set that she does not want anyone or anything  crashing into her torso.  She will run and duck from a ball that is tossed to her, instead of catching it.  She will step aside and let an opponent dribble a soccer ball right past her, or even step away from the ball if she has it and an opponent is approaching.  She does not understand the point of tackle football.  

Jersey #2 will also have limitations about the extent of aerobic activity her heart can sustain.  (Her surgeon warned us the day of her first heart surgery that she would not ever be able to be an Olympic level aerobic athlete).  That physical limitation is uncomfortable, and actually makes playing sports a challenge for her.  I suppose it would take the fun out of sports if you felt like you couldn't breathe well enough and your heart was pounding out of your chest.  (So far, she does not report pain, but a "strange" feeling).   

At the same time, we want her to be active and healthy.  It is my goal to introduce my kids to a variety of sports and activities, so that they can discover which ones they enjoy.  Being active is the best way to maintain fitness and health.  

As I watched Jersey #2 kick and stretch, and attempt the splits, it dawned on me that she might like gymnastics.  She also enjoys monkey bars.  She has an incredible amount of upper body strength, for a child who has had her chest muscle cut into twice.  When she started trying to do flips on the trampoline, I was certain that we needed to let her try gymnastics.

Jersey #2 LOVES gymnastics.  She takes 1 class a week, but wishes she could be at the gym every day.  She is such a determined child that she makes great improvements in her abilities each week.  She is still quite nervous about flipping over on the bars.  At first, she was a bit nervous about the balance beam too.  The beam height fear is fading quickly, as she gains confidence her own strength and balance.

Right now, she is enjoying a basic introductory gymnastics class.  As she progresses in that, we will consider a competitive class.  It looks like gymnastics might be a good fit for her.

Watching Jersey #2 in gymnastics class has inspired some younger siblings to attempt those cool tricks too...

2010 Photo Review

Too Thin

In our fast-food, overweight society, it is easy to lose our understanding of what a healthy body looks like.

Thin is in.

Every week, there is a new report about what foods or lifestyle habits cause obesity.

Parents are cautioned by pediatricians about how to best feed a child to prevent obesity. The nutrition guidelines have changed many times over in just the nearly-9 years I have been feeding kids...

Start vegetables first, so they don't develop a preference for sweets....Switch to 2% milk when they are 2 years old....Limit juice....etc.

Growth charts are treated as a status symbol, instead of a tool to monitor growth trends.

I am all for healthy children. It is very important to serve them nutritional meals, and make sure they are getting plenty of playtime (exercise).

But, I am also concerned that parents are being misled as to what a healthy child really looks like. I ran into this trouble with Jersey #2.

When Jersey #2 started falling to lower curves on the growth chart, I mentioned my concern. Initially, I was told, she was entitled to a little leverage, and maybe she was in a growth spurt.

Next, I was told that our society is used to looking at overweight people, so we think healthy people look too thin.

When I argued that thin is one thing, but her rib bones were sticking out...
I was told that the "experts" were now looking at BMI instead of the height/weight growth charts of yesterday.

When I mentioned that in addition to her bones sticking out, she had been wearing the same clothing size for nearly 2 years already....
I was told that each child is different.

Seriously? I am a mother of 5 children. My children are blessed with the genes of being tall and slender. I can plainly see when one of my children are missing the mark of those healthy genes. Jersey #2 could have been a model for one of those "feed the starving children" commercials. She had bones sticking out all over the place.

What is the point of the growth chart curves, if my child can drop from the 50th percentile to the 12th percentile in 2 years, and still be assumed to be healthy?

How many thin children are falling through the cracks of the system like this, as we focus only on obesity?

There are "unhealthy" reasons for being thin...

...not receiving enough calories/nutrition, for example

...or....not being healthy enough to utilize the nutrition properly.


For Jersey #2, it was an underlying health issue that was causing her to be so thin. After all of those suggestions that she was probably normal, the doctor decided to chart her growth and her BMI to prove it to me.

Instead, she had to announce that Jersey #2 needed open-heart surgery. Her heart was working too hard, and her health was fading. She couldn't hold onto calories if she wanted to.

She was described as being at "the lowest point of acceptable."

The surgical team who evaluated her, made a point to comment that she was extremely thin, but well nourished.

Extremely thin? Lowest point of acceptable? Yet, I was initially deemed clueless about what healthy looks like?

I can't help but wonder if parents of thin children go through similar dismissals of their concerns.

Thankfully, I had my Mom to point out the details...

Healthy children have a little fat over their ribs and hip bones, even if they are naturally thin or petite. The skin is not suppose to sink deeply between the ribs. There is suppose to be the slightest cushion.

The skin is not suppose to sink around the eye sockets either. There are parts of the body that require a cushion of protection.

The tummy is suppose to round out slightly. (Toddlers have a rounder tummy due to immature abdominal muscles). The abdomen should not sink inward.

A hydrated child will have skin that bounces back. Gently press a thumb into the skin over the sternum (breastbone), and let go. If an indention remains, the child is dehydrated.


Children can be small, petite, and naturally thin. They can also be underweight to various degrees that are still considered healthy. But, if they are naturally so, they will still maintain certain cushions of fat layers over specific bones. A child should not look like a skeleton with skin stretched across it. Bones should not bulge through the skin.

And, it is not normal to drop down half the growth chart. Infants are given leverage to pick a curve over time. 5 and 6-year olds are not.

Just as it is dangerous to be extremely overweight, it is also dangerous to be extremely underweight. The brain and heart get all the calories first, so the rest of the organs do without, if there is a limited supply. This can lead to digestive issues and growth being reduced or halted.

The best advice I had ever heard about how to help Jersey #2 was to increase her milk intake. Milk helps settle the stomach, fill the stomach, and stretch it out a bit. This encourages eating. This method is used a lot in nursing homes, with elderly who tend to lose their appetites. It is a quick way to check if your child might just need more calories in order to grow.

When we encouraged Jersey #2 to drink as much milk as she wanted, we noticed immediately that she was perkier and less weak. She ate more readily. We later added Pediasure nutrient shakes to help her acquire more calories and vitamins.

In her case, the cure was a new heart valve that functioned properly. Her heart no longer had to work so hard, so her bones and muscles were able to receive some of the calories too.

Fixing the underlying health problem, put meat on her bones again.

I wonder how soon I will be told that she is jumping up the growth charts too fast! A Mom can dream...

Free

Jersey #2 is Free.

Free from heart medications. (She took her very last aspirin today).

Free from activity restrictions.

Free from complications due to her heart condition.

Free to grow.

Free to enjoy life.

Free to run and play.

Free to be a kid again.



She has come so far in just 6 months.



In May, she was here...


Now, she is here...

PRAISE GOD!

Healthy Heart Update

Jersey #2 had an appointment with her pediatric cardiologist last week. It has been just over 3 months since her open-heart surgery to replace her pulmonary valve. We were anxious to learn more about the level of success of the surgery, her current heart health, and the prognosis for her future.

The results are super duper!

I smile every time I think about it. I think her cardiologist dispensed the highest level of healthy heart news I have ever heard about Jersey #2 in a single clinic visit! I just can't contain my excitement.

I praise God every day, for such incredible healing.

In a nutshell, Jersey #2 is about as healthy as can be for a person with her heart condition. That new valve is in its place and working great. It is doing its job so well that her entire health status has improved.

We see that she has grown and gained weight, which is a great blessing. Now, it has been clinically proven that she is indeed bigger than she was before. That means her heart has successfully endured a growth spurt. This is such a common thing in kids, that most parents don't celebrate it. But, in a heart patient whose growth has been altered by the weakness in her heart, this is BIG! Huge! Enormous! If I type a few more exclamation points, will it convey the level of excitement and relief I feel as a mother?!?!

This valve is serving her heart so well, that she is no longer in the high risk category for lung illnesses, such as the flu. This means her heart is performing well enough to keep her lungs healthy too. This is a first for her. A milestone. This is incredible!

Another thing that is absolutely incredible is that her cardiologist does not need to see her for another evaluation for ONE WHOLE YEAR! Hallelujah! Annual check-ups with the cardiologist are the best outcome for a heart patient. Jersey #2 will require annual check-ups for the rest of her life. But, when her heart is weaker, those check-ups have to occur more frequently. We knew things were going downhill when she started having to be checked every 6 months. When it dropped to every 3 months, we were quite nervous for her health. We were not expecting her to return to annual check-ups so quickly following surgery. Her recovery has been amazing!

Jersey #2 will continue taking an aspirin a day, to prevent blood clots around that new valve, for the next 3 months. The time line for the body's endothelial cells to cover that new valve so that it no longer appears foreign is 3-6 months. Since Jersey #2 is tolerating the aspirin well, and is not resisting taking it, her cardiologist would like to err on the side of caution and have her take it the full 6 months of that recommendation. (I give it to her every day at lunch time, and she has not had any trouble with it upseting her stomach). After that (around Thanksgiving), she will be medication-free....which is also an incredible thing for a heart patient.

In terms of lifestyle, Jersey #2 is free to live the life of a normal 7-year old child. She has no activity restrictions whatsoever. She can push herself to her own personal limit, and her heart should cooperate well. She is essentially in the clear to enjoy life--with annual cardiology check-ups--until that valve starts to wear out. Valves can last 15 years, but tend to average around 7 years in children. We have no idea what to expect with Jersey #2 and her valve, so we will just enjoy life to the fullest until her valve starts to wear out.

The right ventricle of her heart is still quite large, but looks subjectively better than it did immediately after surgery. Time will tell if it reduces in size, or if she grows into it, or how her body will compensate for that. Right now, it does not appear to be a problem for her in any way, so that is good. We may learn more about that in a year.

Jersey #2 will need antibiotics prior to dental work and minor surgeries, as an attempt to protect her heart from endocarditis (infection of the lining of the heart). But, a chest guard is not necessary for her to play sports. Her sternum is considered as strong as it will ever be. Her pink scar will fade in color over time.

Our Tenderheart Jersey #2 is healthy once again!

10 weeks post-surgery

It has been 10 weeks since Jersey #2 survived open-heart surgery (although this picture was taken at the 9-week point).

She is doing so well. Her incision is healing nicely. She has no pain. Her energy level increases by the day....and is already a million times better than the entire year before surgery.

I am most happy to report right now that she has gained just over 3 pounds since her surgery. She looks good. It is so nice to see her muscles develop a little meat over her bones. Her skin color is good too, no longer pale. She has grown into the next clothing size. It is such a relief to see her doing so well.

We are moving on to the big hurdle of raising a child with medical issues--attitude! To be honest, it is really, really easy to turn a medically fragile child into a spoiled brat. We feel so badly for their unfair suffering. We cater more. We indulge. I personally think there is a time and a place for that. All of the gifts, praise, and attention served to encourage Jersey #2 in the challenge she had to face. Grumpiness was permitted more, because she had to endure pain. We parented with much more grace, encouragement, and sympathy, because that is what the circumstance required.

But, in reality, too much indulgence yields a negative outcome. Permissive parenting brings forth selfishness and disrespect.

So now that her scabs are healed and her pain is gone, we start the journey of reminding Jersey #2 that the world really does not revolve around her, even though that is what the last year certainly felt like.

It is an adjustment to get back to "normal."

Food for Thought

After spending over 2 days in a hospital bed, hooked up to a variety of machines, Jersey #2 had to begin the work of regaining ability as she regained strength. She went from IV fluids...to drinking clear fluids...to eating again. She went from diapers...to bedpans...to a beside commode...to being able to use the actual restroom. She went from laying down...to sitting up...to standing...to walking. Even though she is 6 years old, it was a lot like getting to re-live those developmental milestones from when she was a baby.

Only, this time, those milestones were about her...not about me.

It sounds so silly to me now, but I used to place much more emphasis on those specific milestones than is even necessary. I would proudly announce when I chose to start my babies on cereal...and when and how I started fruits, vegetables, and other solid foods. I can still list the age each of my children were when they weaned from breastfeeding. I was proud of myself. Those milestones were about ME. They were about my mothering choices. I had a method that I thought was best, and I would announce it to others as if it was some sort of accomplishment.

As if everyone else should follow my style of mothering? Ridiculous!

In the hospital, each patient is treated as a separate case. There is a general trend that is followed, and guidelines for that trend. But each patient is not expected to be at the same level at the same time. The medical team knows that there are many more variables to be considered, big picture.

So why are mothering choices not treated the same way? The recommendation to begin solid foods between 4-6 months of age is actually just a guideline. So why are there debates about which time point is best? Each child is a separate case. And, there are many more variables other than age to be considered. Mothers should make those decisions about what is best for their own child, instead of following the "rules" set in place by their friends, authors of parenting books, or mothering boards on the internet.

In my experience, with my own 5 children, they did not all begin solid foods at the same age. There were more factors in effect than age, and each child is different. My priorities have changed so much, based on circumstances. I knew it all when I was a first-time Mom to Jersey #1. I was bold in voicing my feeding choices for her. I attempted to follow that same pattern with Jersey #2, and it did not work out as well. Jersey #2 had other obstacles to overcome....including surgery and taking a variety of medications starting at 2 months of age....so her feeding pattern was often disrupted. With Jersey #3, I started breaking the feeding "rules" out of necessity, and that is when I finally learned that each child truly is different and the same recommendations are really not going to fit everyone.

With Jersey #4 and Jersey #5, medical folks started asking me how I decided when to introduce solids, instead of quoting me the recommended guidelines. That is when I started to realize that the same medical community that is blamed for making the strict feeding rules that are found in the parenting debates, really aren't that strict. Feeding milestones are really just data to them. They process that data for that specific child/case. They offer suggestions based on recommendations, only if the outcome is straying away from their goal. It may sound like a law when parents are sitting in the exam room, during a well-child check-up, but it is really just background data for that case. Sometimes the advice is good, and sometimes it is not. That is for a parent to discern.

Parents really are in charge of making the nutritional decisions for their children. Parents should be the ones who know their own children better than anyone else. Therefore, they are the experts on their own children. Not the medical community. Not authors of parenting books. Not the mothering boards on the internet. Not other Mommy friends at the park. Those sources can be very convincing that their method is best for everyone. These decisions should be based on what is best for that child. It is not about the parent. It is not about me. It is about what is best for that child.


I could quote 101 reasons why breastfeeding is superior to a bottle (even a bottle of pumped breast milk)....and all of them would be irrelevant to the fact that Jersey #2 did not have the strength to nurse...or the freedom of pain-free movement to position at the breast...this first time out of bed following her first open-heart surgery. Did it matter she was getting bottle? No....all I really cared about at that time was that she was doing well enough to be in my arms again. In an instant, my priorities changed...

I could say that larger babies tend to want solids earlier, to help them feel content....or that solids helps pack on some pounds....but Jersey #2 initially thought solids were as yucky as her medicine, so she was not interested. Her medicine also caused her to drop weight, so we halted the cereal, weaned off that specific medication first, and pushed breast milk every chance we got, just to help her growth get back on track....before re-introducing cereal....

Even today, regardless of all of our attempts to help Jersey #2 hold onto calories, she is described medically as "well nourished, but very thin." Her heart is to blame. It was working so hard prior to surgery, that her metabolism was extremely high. When she hit growth spurts, her height would try to continue on its curve, but her weight kept dropping curves. We are hoping that she will be able to gain some weight, now that she has this new valve to ease the burden on her heart. It is difficult to be so thin that bones stick through her skin, because there is no barrier of protection from bumps and falls, so every little stumble hurts. We also wonder if her body is having this kind of trouble holding onto calories to grow properly, is her brain able to grow to its full potential?


It was a great milestone, 3 days after open-heart surgery, when Jersey #2 was able to sit up in bed and feed herself yogurt. She loves yogurt. She proudly announced that she could feed herself, instead of having me feed her. Did it matter what she was eating? No. It only mattered that she was feeling well enough to eat...

Jersey #2 entertained us all later that day when she ordered McDonalds for lunch. Our Pastor was coming to the hospital to visit her, and he called to ask if she wanted him to bring her anything to snack on. Jersey #2 asked for McDonalds fries and a chocolate shake. I had to ask the nurse if that was even allowed to be brought into the Cardiovascular ICU. I am certain that McDonalds is not a cardiology-approved food source. The nurse laughed and said, that the doctors did tell Jersey #2 that she could have ANYTHING that she wanted to eat, because they wanted her to move her bowels (to prove they were working fine and not damaged by surgery). The nurse joked that McDonalds food would certainly get things moving along....

It did motivate Jersey #2 to get moving out of bed and sitting into a chair to eat. Plus, I am pretty convinced that chocolate milkshakes have healing properties!

One BIG Week

Jersey #2 survived open-heart surgery! Her recovery has been an amazing whirlwind. She has come a long way in just 1 week.

Her surgery lasted over 6 hours, and included over 100 minutes on the heart/lung bypass machine. The additional complexity to the surgery was due to the discovery of a small hole between the atria (upper chambers) of her heart, which is called the patent foramen ovale. This usually closes at birth, or within 2 years of life, but hers did not close completely. Other folks can live just fine with a small hole there...unless they need to go on the bypass machine. Plus, there was a small coronary injury, while trying to get through the scar tissue, which also had to be repaired. Jersey #2's heart was enlarged, and rotated out of its normal plane, making the surgeon have to reframe his approach to finding all of her heart parts. He is patient, and skilled, and his workmanship is world-renowned. Plus, we were all praying, so we knew she was in good hands.

Shortly after surgery, we met up with Jersey #2 in the Cardiovascular Intensive Care Unit...

She was on a ventilator (breathing tube) for 24 hours. She was sedated...



Recovery Day 1: She was happy when that tube was able to be removed. She also takes to morphine well...

Recovery Day 2: This was the hardest day by far. Sitting up hurt. Deep breathing hurt. Coughing was intensely painful. It was hard to watch my baby go through that level of pain. I'm certain it was hard for her to live that level of pain. She was a trooper. I tried to smile through it all and encourage her every step of the way. It was actually easy to smile, because I was so proud of her....and so very blessed to be her Mom.

Recovery Day 3: She was feeling stronger and able to sit up on her own. Medicines were weaned. 1 chest tube was removed, and the IV line in her neck was removed.

Recovery Day 4: The 2nd chest tube was removed. Pacer wires were removed. Arterial line was removed. The IV port in her foot was removed. She was moved out of the ICU and into an acute care unit. She was free to get up and walk around. This also meant she was able to visit the Child Life Playroom in the hospital...

Recovery Day 5: Discharge Day! Jersey #2 made an amazing recovery. She stunned her parents and her entire medical team. We were expecting at least a week in the hospital. She was up and around quickly, and eating well, so they decided she could go home...

1 Week After Open-Heart Surgery: Jersey #2 had a check-up with her Cardiologist here at home. She confirmed that the surgery was a great success, and that Jersey #2's recovery is impressive. Doc says Jersey #2 looks so fantastic, that she does not need another cardiology check-up for 3 months! We should continue to notice an improvement in her recovery and energy a little each day. She should take it very easy the first 2 weeks, and then return to regular activities as she feels up for it. We have precautions to take for the wound sites, and precautions to take for the sternotomy (broken sternum)...but everything should be at its best in about 6-8 weeks. Wow! I took this picture of her today. It is so hard to believe that this child had open-heart surgery 1 week ago...

Surgery Day

Pure joy flows through this child.

It is amazing to see how well she handles all of the medical adventures she must endure. She did not complain about having to get up real early, or not getting to eat or drink anything. She smiled and waved at all of the hospital staff. She celebrated the new hospital socks she gets to wear. She posed for a picture.

She bravely held out her wrist so that the anesthesia team could insert and IV in her hand. She patiently waited for them to secure it with tape. They rewarded her with an injection of some great medication which immediately put in her a state of sleepy bliss.

They rolled her down the hall into the operating room, with her smiling the whole way!

I sit here in this family waiting room, updating my blog with stories and pictures from the whole week, while simultaneously keeping an eye on the clock.

And Praying.

Lots of praying.

Praying she survives. Praying that surgery is a huge success. Praying that I get to see her sweet smile again soon.

Hand Washing

I did not used to be one of those germ-a-phobic Moms, not even with my firstborn. When friends would ask if they should visit if their child had a runny nose, I would answer that we are not afraid of germs at our house. We eat well, sleep well, play outdoors, and wash ourselves...so we cover the basics for overall good health. Plus, natural immunity is a good thing, right?

Um, yea, well that way of life has just gone right out the window. For now.

We take Jersey #2 out of state to a big-named Children's Hospital one week from today. She will undergo open-heart surgery 2 days after our arrival. Yikes.

I am hoping to keep her as healthy as possible both before and after surgery. I am taking 2 approaches: 1) quarantine ourselves away from the public, and 2) frequent hand washing.

I've been working with the kids on proper hand-washing technique. It seems to be the best way to combat the common spread of germs from person to person. We will have to be diligent with hand washing after Jersey #2's surgery also. It may take a couple months just for her wound to close. It may be 6 months to a year before her body finds its new normal.

I think Jersey #5 might have misinterpreted my hand-washing lesson just a little bit.

Although I did emphasize using soap and water, I did not suggest shampoo or the bathtub faucet.

I appreciate his enthusiasm.

Horses and Heart Friends

HORSES! The kids received the opportunity to go horseback riding this morning, at Galloping Grace Youth Ranch.

It was a magical place. We had so much fun.

Plus, Jersey #2 was able to spend some time with her "heart friend." In addition to being the owner of the ranch, Cowboy Max is dear to our family because he has also been through the experience of open-heart surgery to replace a valve. Last Fall, when Jersey #2 was enduring a series of medical tests to prove her need for surgery, she mentioned to me that she was praying for a "heart friend"...someone who had scars from heart surgery too. A few weeks later, we met Cowboy Max at the pumpkin stand fundraiser for the ranch. We knew nothing about him at the time, except that he had the amazing ability to help Jersey #2 overcome her fear of heights and sit in the saddle of a horse. We learned about his heart experience a couple months later, and Cowboy Max said he would be honored to be Jersey #2's "Heart Friend." When the ranch scheduled our session this morning, they paired up Cowboy Max and Jersey #2, specifically.

Jersey #2 was VERY nervous about sitting in the saddle, on top of that big horse. Max's wife, Michelle, was there to help support Jersey #2 and encourage her. In the end, Jersey #2 was proud of herself for getting on the horse and taking a couple steps.

Jersey #1 could hardly wait for her turn to ride. She has been fairly comfortable in the saddle, and has had a variety of random horseback riding experiences through the years. She begs us to buy her a horse.

Jersey #3 first said that he was not going to ride a horse today. But, he quickly changed his mind when he saw the horses, and when he saw his older sisters riding.

The kids put on their cowboy boots and hats, just for the occasion...

Jersey #5 was pretty excited to see the horses. I had to stop him from attempting to enter the corral a couple times. He is not quite old enough for the ranch program, so he is trying to patiently wait for his turn to ride...

He made good use of the sawhorse steer while he waited...

In addition to riding horses, the kids participate in a service project to learn about the work on the ranch. Today's work station involved scooping horse poop in one of the corrals. Much to my amusement, the children had a blast scooping poop....

They took the job seriously and worked hard...

Jersey #2 said that scooping horse poop was a dream come true! She had the ranch volunteer laughing at that one. When she said that all her dreams come true, the ranch volunteer responded that Jersey #2 must set very realistic dreams.

Jersey #1 was not near as excited about the poop-scooping part of horse care. She has now decided that when she gets a horse of her own, she will pay Jersey #2 to scoop its poop!


The kids were able to enjoy a little play time out at the ranch too. After a hard day's work on the ranch, it is always fun to go down the slide....

...and visit the ranch saloon....
(which is really a wooden playhouse for the kids).