December 31, 2009

My Love's Heart

Today, was Alexa's cardiology visit.  It went kind of like I expected and part of me was dreading.

People always ask me, 'How is Alexa doing?'  And well, the answer is that she is doing great but needs open heart surgery.

She is doing very well, growing, gaining weight, oxygen still in the mid to high 70's which is acceptable but not ideal.  Especially for a flourishing toddler that wants to explore and is eager to learn about the world around her.  The BT Shunt Alexa received at 13 days of age is getting too small for her but it has lasted her longer than we expected.  We went all of 2009 with no surgeries or hospitalizations or really any grave illnesses for that matter.  I am very thankful for that.  And I knew all along that surgery would be here sooner than later.  Sometimes it was the big elephant in the room other days it was a mouse yet it was always present in my life.  I look forward to the surgery so we can put it behind us.

 So per her cardiologist recommendation we are looking at a heart catheter and echo in the next couple of weeks and surgery shortly after.  I have no dates for either as of yet.  Honestly it feels like I am numb to this all as I type.  But my stomach is nauseous ~ nervous. As the days get closer I'm sure things will sink in. But yes, I already cried today.  A micro mini break down as I tried to sleep Alexa for a nap.  Her smile, however made me quickly dry my tears.

After the heart catheter it will probably a couple of weeks so we can meet with the surgeon and then depending on his schedule it could be another couple of weeks for surgery.  This might put us in mid February.  The doctor knows part of me wants to push things off {till like forever} but he said we already waited for her to pass the big growth curve babies have, the curve is now leveling off so she will be able tor receive a larger conduit now and from now on she will begin to feel weaker and more tired as her little engine that wants to just go go go tires out.  And not to mention with her low O2 levels she is more vulnerable to any respiratory viruses/bacteria.  So as he put it there is really no good reason to wait any longer.

I will post more as I have more details.

I have to say, I don't know but I feel better this time around than before.  Maybe more mentally prepared.  Maybe naive although I don't think so.  I feel like this whole year has helped me grow and mature and am more able to apply this counsel given by Jesus Christ:

"So, never be anxious about the next day, for the next day will have its own anxieties. Sufficient for each day is its own badness."   Matthew 6:34

So, yes I am anxious, nervous, scared, what have you but I am trying not to be until the day I know it will be inevitable.

And so for now I enjoy this beautiful face, smile and gentle sweet spirit ~


December 23, 2009

Random Thoughts

My random thoughts ~ 

~  I'm getting better, slowly but surely.  I can see light at the end of this tunnel.  Very happy!  I can also lift Alexa, just can't walk with her yet. Thankfully my honey has been home all week to help.  I hope to be able to walk normally/painlessly in a couple more weeks (hoping).  

~  Alexa will be getting her Synagis shots on Monday, December 28th I switched her from the 24th because there is two nurses on this day and they can inject both shots (one in each leg) at the same time - this I'm hoping will minimize her crying and pain, since those darn shots are very painful, not the needle but all the liquid that goes into the muscle.  I think this might be her last flu season needing them.

~  Alexa has a cardiology appointment on Thursday, December 31st.  We will find out on this day if/when Alexa will be getting her Hearth Cath and possibly what doc thinks about surgery.  Her oxygen sats on this day will determine how to proceed.  Alexa is 15 months, almost 16 months on the 2nd of January.  Her original surgery was suppose to happen back when she was 12 months so these added months have been a bonus.  Both my hubby, mom and I notice she gets more easily tired now after walking/running around after just a short while.  She just stop and lays down in the middle of floor anywhere she is, takes a rest then gets back up.  I notice her nail beds seem more purple to me as to her fingertips.  Of course it doesn't help that it's been cold.  So we just watch and wait.  These are just reminders to me of what awaits us.  And my poor little one hurt herself so bad today, she tripped as she was walking and she normally braces her falls, but today she landed right on her mouth and nose.  She was all bloody for a while.  I noticed that she tore her labial frenum, that little tissue that connects from your top lip to your gum inside.  Poor princess.  Doc said it should be fine, no need to repair it.  I'm worried about her front teeth now though.  Sigh.

~ Oh, exciting!  My hubby and I actually got to go on date for the first time in who knows how many ions.  We had dinner, talked uninterrupted (except by waiter) and went to see the movie Avatar.  It was visually stunning.  The story line made you think.  I kept hearing about how this was a whole new world Pandora, and although I agree it was visually stunning to watch I couldn't help but think that really Pandora was much like earth.  For example, there were horses but instead of 4 legs they had 6, and they're was still things we know here like mountains, waterfalls, trees, jellyfish type creatures, dragons like the dinosaurs of old.  So really, it made me think that nobody can top God the ultimate designer and creator. I enjoyed my date, dinner and the movie.

~ We wanted to take Yasmin to see The Princess and the Frog and since we could not take Alexa with us to the theater, well we prefer not to, we decided to go to the drive-in.  It was a little crazy at first but after we got everyone situated and fed, things worked out and we enjoyed the show.

~ I also got to go to my Circuit Assembly and to enjoy many talks geared towards strengthening us spiritually.  The theme was about, Safe Guarding Your Spiritual Heart In Sick World. Really enjoyed getting spiritual reminders and strengthening our love for God.

~ And here is a pic of my son Caleb at the assembly.  I couldn't believe it when I saw him all dressed up and ready to go.  It hit me how big, grown up and handsome he is getting.  I saw a glimpse of the man he is becoming.  For a moment time stood still and my heart fluttered both with joy and sadness.  Time has gone by so fast, he was just a newborn in my arms it feels like yesterday.  I feel like I only have a few more years left to really make an impact on his heart before he turns into a teenager.  I love you son! I am so proud of you! 

Okay, I think that's it for now.

December 15, 2009

192 hours of rest {lessness}

I am blue 

I am ready to get on with my life. 

But sigh .... my leg doesn't think so. 

It's been 192 hours (Eight Days) since I last walked.  I find myself on the floor A LOT.

My accomplishments today:

I got up!
Combed Yasmin's hair for school.
Remembered to give kids lunch money.
Fed them old fashioned oatmeal for breakfast.
I decided I need to get out of my frumpy sweats and so I took a bath.
(of course Alexa woke from her nap just as I was starting to relax in the hot water)
Got dolled up a bit.
I struggled to feed Alexa lunch, hard to carry anything in your hands when you need them to hold you up with the crutches.
The other day I sat on a stool in front of my stove and made breakfast for everyone - eggs, ham, potatoes, and flour tortillas - was very proud of myself.
 I tried to clean up and Alexa beat me to taking things down and out. 
I read a magazine.
I cried of desperation.
I supervised my kids in some chores that I couldn't do.  
I used a heat pad on my leg.
We will be having Tuna Sandwiches for dinner, with egg slices, avocado, lettuce on whole grain bread.  I'm looking forward to it.
And more importantly, I'm trying to remain positive and learn from this experience.

And thank you to the love of my life
who has taken on more than his share during this rehab period of my injury!!
Love you babe!!

And again thanks to my lovely mom for coming over every day to help me.  I don't know what I'd to without her.  And thanks dad for not minding her coming over for a few hours.  She is so great she even postponed her vacation she was planning to visit her mom.  I want her to go because my grandma is 80 years old but she said she can't leave me like this.  I love you momma!

December 12, 2009

Down and dreaming

Hello all ~


my dog, my torn calf muscle, my new crutches and orthopedic boot

my new sad life

I can no longer stand or walk unassisted.  I cannot carry Alexa when she wants to be picked up, I cannot run to her when she falls, I cannot clean my house, do laundry or make dinner.  I'm sure I could if I had to but for now I'm just trying not to fall with my crutches.  I can only warm things up and fold clothes.  Anything that requires sitting I'm good.  My good leg hurts for carrying all my weight when standing on it or hopping around on it. I've resorted to crawling around my house at times (not fun and little degrading for a mother), my shoes do not fit on my swollen foot, I now take baths instead of showers (only visible perk about this). 

I dream of walking again unassisted, being able to take Alexa on our daily strolls around the lake, running/jogging again like before I tore my calf muscle and of wearing some sexy heels again. 

I am sad.

I was depressed.

Now I'm just waiting.


Hoping my leg will heal soon.

Thankful it is nothing worse.

If you can walk, be grateful.

I will never take walking for granted again.

Taking a simple beautiful step without pain is a wondrous miracle of design and engineering.

I will always warm up before I run.  I will listen to my body and not push beyond my limits.

I hope I can lift my baby and carry around anywhere her little heart desires.

In the meantime, thank goodness for Nana ~ my lovely mother who has come to my home everyday to help
and my wonderful sis in law Betty!   

Oh and congrats to my little guy who won 2nd place in his flag football league. Go Snakes!

So has this happened to anybody else?  Any clue when I may walk and/or run again? Would love to know. 

Thanks and good night!

December 6, 2009

Parking Lot Musings

November 2007 - Texas

So it is was pretty cold last night by Arizona standards and I loved it! I wore my cute knitted hat to keep my head warm, my thick jacket and bundled up the kids.  We headed for a quick trip to our local Home Depot. Oh how exciting! (read sarcasm) But considering Alexa and I don't get out much it kind of is.  Not the going to Home Depot part but being all together and being able to talk to my hubby in the front seat.  Like usual, if we do go somewhere together 'store like' my hubby and I try to take turns waiting with Alexa as to not expose her to possible germs lingering in the store.  In this case, her and I waited in our cozy van while my hubby and kids went inside looking for our needed item. Alexa was sound asleep.  

As I sat there in silence, I began to think about a question an new expectant mom posted on a CHD support group:

"Do you blame yourself for your little one's heart defect?"

She said she knows that she shouldn't yet still struggles with the guilt.  I could relate.  Could you?  As I sat there in the parking lot, I mused about what I had earlier replied to her.  How I had over analyzed everything that happened during my pregnancy, especially those first few weeks. 
Alexa was planned and very wanted.  We tried and I anxiously took a pregnancy test as soon as I missed my period.  I found out I was pregnant early Christmas morning 2007 in my mother-in-law's bathroom in Texas.  The morning before I had gone jogging with my hubby, something we enjoy doing together when we get the chance.  I had been feeling great! I was excited to share the news with my hubby and I wrapped the pregnancy test and gave it to him in private.  He was so happy and nervous as I!  He shared the news with his family who were equally excited.  Everything seemed right.  Unfortunately after our trip, I began to feel sick, I was catching my nieces cold, fever and cough.  It turned ugly.  I had not been that sick in a long time.  I worried about coughing my new baby out.  The doctor told me I wouldn't, which I knew but still felt like it was going to happen.  She said I was beginning to get bronchitis and gave me some antibiotics.  I refused to take them (yet).  I wanted a chance to get better naturally.  I wanted to avoid all medications if possible.  Thankfully I did finally get better on my own, no drugs.

During those first few weeks/months of my pregnancy I was VERY cold.  I had unexplained chills.  I walked around my home in jackets and blankets.  I rarely went outside because I would freeze.  It wasn't really that cold but I was.  I began having lots of side pain which my ob attributed to round ligament pain, stretching inside etc but I was worried about a tubal pregnancy.  So one January morning close to midnight, I awoke in pain again and had had enough worry and wonder, so I went to the local ER to get answers once and for all.  I peed in a cup and had my first ultra sound.  The first of many to come for my peanut.  I was told everything was okay and that the baby was "right where it should be."  I was relieved.   The ER doc mentioned however, that I may be developing a UTI and so she would be prescribing some antibiotics.

"Are you sure?" I replied.  "Do I really have to take them? Are they safe?"

"Well, you don't have a full blown UTI but a few bacteria indicating one could develop, if that happens it could be very bad for you and the baby. This antibiotic is considered safe while pregnant.  Pregnant women take them all the time."

I wondered though because I did not feel like I had a UTI.  I asked the nurse before being discharged if the fact I was not given an alcohol wipe before peeing in the cup could have affected my results and she said maybe and was surprised they had not given me one, but I said no, just a cup.  Being pregnant and in the waiting room forever, I had to pee, no time to go back out and ask for wipe.  (Sorry if too much info)

So I left the hospital, now with the sun shining in the sky and my husband late for work. I was happy though, happy to know my peanut was growing right were it should but with a new decision to make. 

Later that day I told my mom about the findings and she told me she use to cure any UTI's she got by drinking  Corn Silk Tea.  I bought some, I made some, I drank a little but since I felt no symptoms I wasn't sure if I was getting better.  So with the doctors words of warning of the dangers of an untreated UTI I took the pills, the pills 'considered safe while pregnant taken my many pregnant women'.  After taking the pills, I felt no different, again because I had no symptoms of a UTI.  My side pain however continued through my pregnancy but I knew it was just from the baby growing. 

So my answer to the moms question was YES.  I have blamed myself.  All the doctors say, it is just a matter of chance, 1 in 100, nothing you could do to prevent it, nothing you did cause it.  But I will always wonder about these things that happened to me those first few weeks.  What if I hadn't gotten sick?  What about all that coughing and fever?  What if I didn't have a UTI? What if they would have given me the wipe?  What if I hadn't taken the pills?  Why was I SO cold and with chills?  I use to blame myself A LOT at the beginning.  Especially as I came to terms with what the diagnosis meant for my baby.  Slowly and with time I began to accept what the doctors told me.  I know in my heart I would have never done anything to intentionally hurt my baby.  All this stuff just happened.  I did my best to be healthy and avoid harmful substances, even soda.

I have slowly learned to let go of the guilt but in the back of my mind and bottom of my heart a faint voice is heard asking and wondering  

what might have been ... if 

and I think it may never be completely silenced.
So as I sat there in the dark, I asked God if I was my fault.  Tears clouded my eyes.  I thought of how something so seemingly insignificant could have completely altered my daughters life and future forever.

I thought about all the implications and precautions we have to take with our children suffering with CHD.  How we have to go the extra mile to keep them safe.  I saw lots of families go in and out of Home Depot and place their seemingly healthy little children in the back seat of their cars.  They seemed so care free.  Not worried about all the possible germs inside and what contracting a the flu could do to their babies heart and lungs.  Then I was shocked to see one of those families drive away with the mom carrying her baby in her lap in the front seat.  How in an instant their world could be shattered because they chose to not restrain their child.  That is a big pet peeve of mine.  And I felt like running out and knocking on their window and say how could you place your child at risk like this.  I guess we all have choices.

I sat there for a while feeling alone in my plight.  Angry to see some parents be so irresponsible with the life of their children.  The situation seemed unfair.  I realized soon enough however, that I was not alone.  That there  are thousands of moms and parents out there that willingly sacrifice for their children sake.  Like all the amazing mothers and fathers I have met along this journey.  The parents who willingly hunker down at home for the flu season every year to protect their children the best they can from any further dangers and illnesses.  And parents who courageously crusade for their child's health and selflessly keep vigil over their child's hospital bed day and night.  The loneliness I felt was replaced by happy and warm feelings.  Feeling lucky to be a part of a group of such loving, caring and devoted parents like you, yes, you.

December 2, 2009

Someone ...

is feeling a little better today!

And it's not the plant.

After mommy saw the mess, someone saw her make this face

then she smiled and got the camera

until my brother and sister got home from school and helped someone do this

then mommy wasn't smiling anymore but someone was thrilled!

The END.

December 1, 2009

Cardiology Update and more

Alexa had her cardiologist visit on Friday, November 20th. She weighed 22 pounds 5 ounces. I cannot remember her height. Her oxygen sats were 79. For the first time Alexa was walking around the little room before Dr. P came in. He was happy to see her walking. As soon as he opened the door and the assistant was walking out from doing her vitals he asked her "What are her o2 Sats? He was pleasantly surprised. He told me he really thought they were going to be lower. Especially since her visit the ER and I had told him they kept bouncing around from to very low to her normal. We talked about how she is doing and talked a lot about surgeons and locations. Alexa had her last surgery at our local children's hospital with Dr. T. Now Dr. T is in another city.  I would like Dr. T to operate again because he has already been into her heart and knows the work he did before and not to forget he is an excellent surgeon. The problem is the location, that it is farther to us, and that all of my support system is here and that I have older children to think about and care for. I'm also worried about the amount/experience of this new hospital in dealing with babies after open heart surgeries, like the intensivist, nurses etc. So I have considered staying here and seeing someone at another great local hospital or maybe even going to C.S. Motts in Michigan with Dr. Bove. It's a hard heavy choice. I really just wish Dr. T was still here like before, that way I at least know the hospital, it is close by, and I trust Dr. T. Now no matter what, where, who we choose there will be something new. Open heart surgery is scary in and of itself and dealing with new unknown surroundings and people when you are trusting them with your child's life is overwhelming. I guess I just need to make some calls, maybe some appointments and just pray really hard on the matter. For a while we had been going to see Dr. P every 6 weeks. He now said he wanted to see us in 4 weeks. He said he might order a cath next time he sees us to be done in January. I was kind of surprised and sad by this. He said it was just a delicate balance we have to have with her and explained that she is pretty much done with that steep growing curve and so now waiting a month or two is not going to be much of a difference in the size of conduit they can place. I told him I just don't want her to have to 2 caths and he said no just one would be needed. I know he is thinking Cath in Jan and start thinking surgery in Feb/March. He said he would agree to wait a bit longer for the cath if her o2 Sats did not change or dip by the next appointment. Because of his schedule we will not be seeing again until December 31st. In the mean time I will just enjoy my baby and try to push surgery thoughts besides the planning out of my head.

Also, Alexa is currently sick. She started running a fever Sunday night, all day yesterday she felt awful, she was tired and achy didn't walk around the house and just wanted to be carried and held. It wasn't till her big brother and sister came home from school that she perked up a little bit. She was running a fever between 100 and 101. something. I called her cardiologist to see if it was okay to still giver her the baby aspirin she takes, he got on the phone with me and explained yes and why. He also wanted to know her symptoms and how she was doing. He suggested to call the peds office as he was worried about the flu. I called them as soon as I got of the phone but they told me to wait and see if how she did and if any other symptoms developed since she didn't have any other cold/flu type symptoms. She is currently still asleep this morning so I hope she has a better day. She did sleep better last night. I only gave her Tylenol once around 11 p.m.

Here are some random pics of the last few days.

In a cute dress after a morning in the ministry.

With cousins.

Her favorite playing outside with rocks and dirt.

Princess cousins.

Lot's of feathered visitors.

With my honey.

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