Walking and Surgery Again! ~ Update 8

Alexa, is doing so well it is unbelievable to me.  The only pain meds she is on is Tylenol and Ibuprofen.  She's also taking Lasix and Aspirin, all orally now.  She got up to walk yesterday.  I was pretty nervous about it.  I thought standing up was enough but her nurse said she could do it and the surgeon wanted it.  She said we'll just have her walk to the doors and I said, 'of the room right?'  And she said 'no, out to the PICU entrance'.  I couldn't believe it but she did it and seemed like she actually liked it.  Today she was up and out again and playing.  She did not want to come back in the room.  Nurse said, if you have to fight a patient to come back to their PICU room it's probably a sign they don't need to be here anymore.  That is very true and we should/would be going home in in day or two if it were not for the Complete Heart Block. 

BUT instead of heading home, Alexa will be back in surgery tomorrow to install a pacemaker.  Unfortunately, her heart electrical conduction was damaged during surgery.  This is one of the risks of the Rastelli since it involves working in an area very close to this system plus it is invisible so doctors know it's there and try to avoid it but it cannot be seen.  

Complete heart block (complete AV block) means that the heart's electrical signal doesn't pass from the upper to the lower chambers. An independent pacemaker is needed to shock the ventricle into contracting and pumping blood.   Gabe and I are pretty sad about it all but learning to accept it.  She could be better and she could be worse, but we cannot change what is for us.

On a good note, she had her first echo today and doctor said the repair was great.  So, we are very thankful for that.  Alexa has been playing today.  Lots of family and friends came to visit these last few days.  Thank you for all of your love and support, it really means soooooooo much in these stressfull times.

Okay, I am so sleepy and tired.  Alexa, still needs to get a dressing change on the central line in her neck.  That will also be stressfull, so tired, so tired, and tomorrow is another day full of anxiety.  We are sad for this big set back, but docs tell us it won't take us back too far.  Just makes me sad to see my princess come this far along to know she will be headed back into the OR.  Please again, keep her in your prayers that everything goes well tomorrow.   I leave you with a few pics of the last couple days.

First day she sat up with me out of bed.

Sitting up by herself.

Watching favorite Annie movie

  Visiting with Morgan the nice doggy

Walking down the hall!

Having some fun!

Popsicle prize after long walk.

Just happy to be out walking again.

One with the family....

Progress ~ Update 7

I've been trying to write this update for a while and so many things have interrupted me from finishing it including of course just caring for Alexa and my need for some sleep.  

Although Alexa is still feeling pretty crummy, good progress has been made.  Alexa lost her catheter last night and her chest tubes today!  She is also only on one IV heart med plus some intermitent Lasix.  She is on a liter of oxygen via nasul canula, mostly as an extra support since she is being given some sedative and pain meds as needed.  Docs are amazed at how well she has progrssed and honestly so are we. 

Last night was also better.  Alexa was able to rest for longer intervals.  She is no longer holding her breath but she did have periods were she became agitated, moaning/groaning then her sats dipped and she had some trouble breathing.  When we noticed this was happening we would sit her up and give her those chest pats and that would help her move/clear some of the fluid that was accumalating in her chest/airway.  Of course coughing hurts a lot right now, which is why she chooses not to.  But even when tiny little coughs come out she does better afterwards.  After these short episodes she would again go back to sleep, so that meant I also finally got at least an hour straigh of sleep and it was wonderful!  Mostly before I was surviving on 5 mintues of dozing off here and there.  As of 9:30 pm tonight she has been sleeping very comfortably and peaceful.  I think this is the longest period with uniterrupted sleep she has had since surgery, almost 11:30 p.m. so it's going on two hours.  Sleep is essential for healing so I hope she continues through a mostly peaceful and restfull night.

We also were having major trouble with the monitors false alarm beeping almost all day long, because it was having trouble communicating with her external pacemaker.  Finally at about 4 p.m. they brought in a 5 lead cable and that seemed to do the trick.  We were finally able to get some QUIET sleep, I think for a little over an hour.  And that was so wonderful for all of us!  Dr. T also wanted to get Alexa out of bed, so I got to carry her on a chair.  They want to do this to get the fluid moving.  After the x-ray yesterday, they said she DOES NOT have pleural effusions which is great.  She does still have some wetness in her chest and sounds junky a lot.  But this is better than the pleural effusions which basically means fluid accumulating around the lungs mostly underneath.  Todays xray looked better than yesterday's but still "not too hot" as one doctor put it they will be doing another at about 4 a.m. - for those not familiar with the PICU world, it is a rule they must come to bother I mean check on you at least every 2 hours, so any normal sleep for the parent or the patient is thrown out the window. 

The big deal is that she is STILL in COMPLETE HEART BLOCK.  I am very sad over this and worried.  I do not want her to head in for another surgery when she is just healing from this one.  The surgeon told us he will not be worried about it until the weekend.  Still hoping it returns after some swelling goes down.  I REALLY REALLY REALLY hope so.  Alexa is just so agiated at this poing and cry's whenever anyone tries to come near.  She only lets me (most of the time) just hug her but I've been the bad guy on occasion, so she has even pushed me away.  It is so very sad.

She took couple little sips of water today and a couple bites of a cookie.  Other than that she is not interested in anything to eat yet.  Nothing makes her smile. Hoping tomorrow she will feel better. She did clap once today at getting some water and said our Dogs name so that was a tiny glimpse of her today wanting to shine through, mostly it was gray though with her feeling down. 

The surgeon told us he was able to use a 16mm contegra valved conduit.  I was expecting for him to be able to use a larger size but he said this one fit and lay best under her breast bone.  He said hopefully she will get 4-7 years out of it before needing a replacement.  At that moment my heart got sad yet again.  Thinking of seeing her through another surgery.  Knowing this is not her last.  It is so heartbreaking.  Since I was already pretty much running on fumes the thought of future surgeries was enough to almost want to make me want to shrivel up.  But I have to keep my chin up.  My hubby asked me today how I was feeling about the pacemaker because he was not sure how to feel.  I told him that yes it was hard, and although I want to feel pitty for us at times and hate that our daughter is going through this, I think and I have learned that it is best to count your blessings.  Be grateful for what we do have and that although so very hard her condition is treatable.  There is hope.  I have hope for today, tomorrow and her future.  Hope and faith knowing that no matter what life throws at us, we will get through it with by the strength of God and the wonderful love and support of family and friends.  We have shed many tears since our journey began, but it is comforting to know that every one of our tear drops is precious to God and does not go unnoticed.  Thank you for your continued prayers on our behalf.  It feels great knowing so many people all over the world are praying for our baby.  Thank you again so much!

XOXO

Heart Block & Maybe Fluid ~ Update 6

Alexa has been doing for the most part very well.  All the docs are very pleased with her progress.  She was able to get extubated last night at about 4:45 a.m.   It was rough but she did feel obviously relieved to have he tube gone.  She has been feeling still quite a bit of pain today, being very restless.  I notice she is not able to catch her breath and she panicks as do I. Kind of stays stuck in a breath.  They think it is due to the chest tube pain. They are thinking she also might have some pleural effusions, fluid around the lungs.  They are going to be doing a chest x-ray shortly.  Another worry we have is that she is in complete heart block.  This means her heart us unable to beat on it's own.  There is a signal starting in her atrium but not registering within her ventricle at all.  She is being paced with an external pacemaker now but they are hoping that it is just the inflamation affecting her and within a few days her electrical function will return.  If not, Alexa will need another operation to implant a pacemaker.  All very stressful.  Please continue to keep her in your prayers.  She does not feel well today at all.  No smiles from my baby yet.  Please pray that her normal heart rythim making ability returns soon.  And for no fluid.

A Thousand Words ~ Update 5

We were so happy and relieved to finally be reunited with our precious daughter.  So glad to have the actual surgery behind us.  Now comes the recovery phase of this complex 8 hour surgery.  It was a long hard day for all involved but of course especially for Alexa.  She has endured so much and has been a true warrior through it all! We are so proud of her!  And also eternally grateful to our God Jehovah for sustaining her and us through it.

In case you have no idea what CHD looks like, what CHD does to a baby, I am posting the ugly truth ~

a picture

because as they say,

a picture is worth a thousand words. 

and although it is so very very very hard to have to see your baby through something like this,

I can still see the beauty of her being, CHD is not Alexa, it is only a part of her. 

To us, beneath all the wires and tubes, she is still just our baby.  Our innocent and beautiful princess.

Now, on why I am still awake at this late hour ~ well, although Lexi is currently asleep, she has been trying to wake and even sit up every now and then.  She gets pretty agitated when she wakes up and realizes she has a tube down her throat and of course wants to pull it out.  So hubby and I are taking turns staying up by her bedside.  She has an awesome nurse, Larry, who has been taking great care of her.  Docs are thinking of pulling out the breathing tube soon, as soon as they know she will be fully awake.  She is receiving very little help from the machine and is acutally breathing over it and her blood gases are good so they are confident she is ready.  Hopefully it will be soon, although I am glad she is resting and if she keeps sleeping till morning then they will just let her rest.  So we shall see.  Also just wanted to say thanks to my family that was able to come down and spend this loooong day with us, it definately helped to have you here.  And to those that were not able to be here, we understand and could still feel your support.  Please keep praying for a smooth and speedy recovery for Alexa.  Thanks and good night (morning).   

Out of Surgery!!! ~ Update 4

I just got to see my baby for a few moments as they wheeled her by to the PICU and she looked BEAUTIFUL!  She did great we hear and her lips were so pink!  I can honestly say I felt like she was born again.  Those same feelings I felt the first time I saw her after she was born I felt again.  I was in love!  And  ever so grateful to see her again!

We are waiting as they prepare her in her room to go be with her and also still need to meet with the surgeon to see how things went from his perspective.  Will update later! Thank you for all your prayers!  Please keep them coming through these next critical hours after surgery.  Hugs and kisses to all.  We felt your love and prayers on our behalf.

Sewing Conduit ~ Update 3

Still on bypass.  Surgeon sewing in conduit.

On Bypass ~ Update 2

Went on bypass at 11:59 a.m.

Surgery Begins ~ Update 1

Alexa was taken back into the OR at 8:55 a.m.  Her surgery was delayed due to a late night emergency. 
So we got to enjoy a few extra hours of sleep but unfortunatley her surgeon and anasthesia doc did not.  I'm hoping they are use to these events and are still able to perform excellent.  They assured me they were ready.

Alexa graced us with her usual beautiful smile and cheerful disposition this morning.  Sadly it soon would vanish from her face as she became suspect of the hospital surroundings.  The anasthesiologist explained he would be brining a sleepy/feel good medicine they wanted me to give her and that as soon as she began getting loopy (about 5-10 minutes) they would take her back and getting her ready. After I gave her the medicine I began to tear up becasue I knew the baby I know and love would be falling asleep and heading into a fight for her life.  I didn't want to giver her up, I wanted to keep holding her forever and then just like that she was gone and my hubby and I broke down together.  And now we wait.  She was so cute though because she kept smiling and laughing at us as she got drowsy, she made us laugh and smile through our tears. 

We received an update that the surgeon began surgery (the incision) at 11 a.m. and she is well.  Please keep the prayers coming!  Thank you so much!  Each and every one is so appreciated.  Makes us feel good so many are praying for her/us. 

PreOp Testing

Today we take Alexa for preop testing and to meet with anasthesia.  Tomorrow is the big day. 

I ask of all you reading this is for your precious prayers on Alexa's behalf, her surgeon and medical team and our whole family in general.  We appreciate every single prayer!

I will update as possible. 

The journey begins, again ...

The Rastelli Surgery

Here is some more info on the surgery Alexa will be receiving.  Plus some other things that need to be corrected like her muscular vsd's found during the cath and clamping of one collateral vein/artery not sure which it is.  Surgery will be around 7-8 hours long. 


Pathophysiology

The Rastelli operation was initially utilized for the repair of d-transposition of the great vessels with ventricular septal defect and pulmonary stenosis. It has subsequently been utilized for a variety of congenital heart defects characterized by two ventricles and overriding of the aorta with severe pulmonary stenosis or pulmonary atresia. Pulmonary atresia with ventricular septal defect, and double outlet right ventricle with pulmonary stenosis or atresia are anatomic subtypes also frequently submitted for the Rastelli procedure. Cyanosis is the prevailing preoperative pathophysiology.

Surgical Technique

The Rastelli repair requires cardiopulmonary bypass and aortic cross-clamping. The ventricular septal defect is visualized through a right ventriculotomy. Obstructive right ventricular muscle is excised, and a large intra-ventricular baffle is sutured into place closing the ventricular septal defect and redirecting left ventricular outflow to the more anteriorly placed aortic valve. A valved homograft conduit is utilized to achieve right ventricular to pulmonary artery continuity. Transesophageal echocardiography is utilized to help assess adequacy of repair. Cardiopulmonary bypass time and aortic cross-clamp time required to complete repair is usually moderate to long.

Postoperative Considerations

The Rastelli operation, despite its many advantages, is an extensive operation and sometimes results in early hemodynamic instability. Invasive monitors utilized following repair include arterial, central venous and left atrial catheters. An oximetric catheter is utilized for monitoring cardiac output. Vasoactive infusions required for hemodynamic management might include dopamine or dobutamine, epinephrine, nitroprusside, phenoxybenzamine, and milrinone. Satisfactory postoperative hemodynamics are dependent upon free, unobstructed egress of blood from both the left ventricle and the right ventricle. Obstruction to either outflow tract will contribute to ventricular failure. Arrhythmia is a potential postoperative complication. Temporary atrioventricular pacing capability must be readily available. Bleeding is occasionally encountered following the Rastelli procedure. Intracardiac pressures should be normal postoperatively. Arterial oxygen saturation should be normal. Uncomplicated recovery from the Rastelli operation should result in a hospital stay of one to two weeks.

Appreciating Rainbows

My goal today was a to take an outside family portrait.  I had great plans.  But alas, our normally sunny and warm weather decided to be cold and rainy instead.  It seems that anytime I decide I would like outside pictures the weather dictates otherwise.  Seriously, it has become an ugly pattern I have become, I hate to admit, a bit bitter over.  And I think it began on my wedding day, when my lovely garden wedding had to be rushed inside due to a freak monsoon storm that developed just moments before our ceremony.  So today, I sulked and groaned at the falling rain, which I normally welcome by the way.  Just not today.  We all watched the skies attentively.  I prayed it would go away at least just for a moment.  My plans got thrown out the window, now all I wanted was at least one simple picture outside.  The time was ticking, the sun would set at 6 p.m. and then it would be too dark.   The sun began creeping through some clouds and it appeared at first glance that the rain had subsided.  But it was mocking me.  A light but contast and odd drizzle continued through the mixed sunshine for what seemed a very long time.  As I was beginning to lose hope it finally stopped.  And we ran outside and captured this and a few other precious outtakes.  

And I was EVER so grateful! 

But then

GASP!!!

A full beautiful rainbow right in front of us!

And if you look clearly not only one but two!!

After this, I came inside and cried a little. 

When I saw the rainbow, I felt as though God was telling me everything was going to be okay.   

I sighed and smiled.    

“The way I see it, if you want the rainbow, you gotta put up with the rain.” Dolly Parton

“And when it rains on your parade, look up rather than down. Without the rain, there would be no rainbow." G.K. Chesterton

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”  Lord Byron

And as I write this, I sit enjoying the sound of the falling rain.


Now, I must go clean my toilet bowl because as my son put it, "Alexa juiced up my toilet!" Meaning she decided to pour her orange juice in and around our toilet and mix it with her hand.  Needless to say, she got a good washing but now the toilet awaits me.  Funny how juiced up toilets are just one of those things in life I never knew I always wanted.  

One Thing

Just one more week and it hurt's like crazy ... 

What CHD Means to Me Now

CHD you meant nothing to me.

I did not know you.

I had vaguely heard of your effects but never knew you had a name.

Honestly, I would have rather never met you … ever.

But you had other plans.

You abruptly came into our lives. No one invited you.

You were not needed nor welcomed. But you came.

You hurt my baby. You broke her heart.

I don’t like you. I am tired of you.

You have caused much destruction.

You have taken too many lives.

You have shattered too many dreams.

You have caused much bloodshed.

You have created a never ending river of tears.

You have broken many literal and figurative hearts and continue to do so.

When you break one child’s heart you break the whole families.

You know that and you like it. It is your thing.

You should be ashamed of yourself.

But your time is coming. You will not succeed in this endeavor forever.

I know that for a fact. Can you feel it?

Things are changing. Your victims are uniting!

They are rising up and will be silent no more!

We will make a difference. We will take a stand!

For all the warriors, those lost in the battle and those still fighting, we will keep fighting you!

Our children, our families, our friends, our neighbors, our medicine, technology and finally our God will conquer you!

Can you hear it? Everyone is talking.

You have ignited a raging fire that can no longer be contained.

Enough is enough!

With every beat of our heart’s we will make known the monster that you are.

You may have broken our hearts but not our spirit.

You may have taken us down, once, twice or many a time, but never out.

You affect unborn children. Why do you disrupt them in the womb? Do you not know that is a sacred place?

You affect newborns. Why must you take them away from their mother’s aching arms and swollen breast?

You affect babies. Why must you take them away from the security and comfort of their home?

You affect toddlers. Why must you interrupt their development and personality and joy to explore and learn?

You affect children. Why must you place fear in their hearts as they learn to face you?

You affect teenagers. Why must you leave so many scars? Do you not know these years are difficult and nobody likes to feel different?

You affect young adults. Why must you meddle in their future plans?

You affect parents. Why must you bring such agony and constant worry?

You use to mean nothing to me. Yet now I think of you often.

I don’t like to but I can’t help it.

I can think of you anywhere at any time for any reason.

I can look at my baby and think of you.

You are there, lurking in her mended little heart that needs fixing again.

You are there when I see her oxygen saturation levels hit 67.

You are there when I worry about the physical and emotional toll you will take on her.

You are there as I prepare for her next surgery.

You are there when I lie next to her at night and wish you were not in our lives.

You are there when my older children tell me they wish their baby sister did not have to go the hospital.

You are there when my husband cannot change jobs because we need the health insurance.

You are there when my mom calls everyday wanting to know how the little princess is doing?

You are there when my friends ask me about my baby and her next surgery?

You are there when I close my eyes and I want to be sure I can see my daughter outlive me.

You are there when you make everyone of her smiles, giggles, new words, kisses and hugs more meaningful.

You are there when I read about new families joining this journey.

You are there when I hear about babies passing away.

You are there when parents are worried sick at the hospital keeping vigil on their little ones.

You are there with every doctor visit.

You are there when I see the oxygen tanks sitting around my house.

You are there when every night I must give my baby half a tablet of baby aspirin.

You are there when we want to go the zoo but we must avoid public places.

You are there when I want to go to the store but I decide against it for fear of my baby getting sick.

You are there when I must face a medical procedure as simple as a blood draw but I have the courage to take it because my baby has endured that many times over plus the unthinkable.

You are there when I walk around the grocery and see a box labeled 'heart healthy' and think 'if it were only that easy.'

You are there when I hear or see future dates and wonder what our life will be like.

You are there when I feel my heart start pounding faster with worry and anticipation.

You are in my prayers to God as I pray for us and others.

And you are here now as write these words.      

I did not know you CHD and you meant nothing.

With time I have come to know your ways and find you worthless.

I admit however, that your presence is undeniably powerful.

When you barged into my life you expeditiously made all the blessings in my life more valuable

and that CHD, means everything to me!

I wrote this at 2 a.m. hope it makes sense when I wake up and read it later but it does come from my heart.

CHD ~ The Most Common Birth Defect

The Most Common Birth Defect: Have You Been Tested for It?

It's Congenital Heart Defect Awareness Week and I found the following article online at CafeMom that I wanted to share here.  I think the more info that is out there on the subject the more lives that can be saved.  I am thankful that Alexa's CHD was found while I was pregnant.  It did help us prepare like the article mentions, with what to expect, good doctors and hospital.  We also had no history of heart disease in our family so this took us by surprise as it does most CHD families.  Okay, so below is the article. 


"Congenital heart defect is the number-one birth defect and the leading cause of newborn deaths. Yet three out of five women who have given birth to a baby with such a defect were never tested for it during their pregnancy.

"Congenital heart defects kill more children than childhood cancer, and yet, pregnant women are not routinely tested—and newborns are not routinely screened—for this defect," says Lenore Cameron, the president and executive director of Little Hearts, an organization that provides education and resources to families affected by congenital heart defects. "Early detection is absolutely critical to successful treatment—and, in countless cases, it saves lives."

The benefits of knowing in advance? According to a Little Hearts survey of women who knew in advance that their child would have a heart defect:

1. You'll be able to choose a hospital that's better equipped to deal with a newborn with a heart defect or arrange to have a pediatric cardiologist on hand for the birth of your child.

2. You can prepare yourself mentally and emotionally for the arrival of a seriously ill baby.

3. You can do your research while you're still pregnant so you'll be better informed about how to care for your child.

More than 80 percent of the survey's respondents said that there was no history of the birth defect in their families.

According to the March of Dimes, most congenital heart defects cannot be prevented, but there are some steps you can take before and during your pregnancy that may help reduce the risk of having a baby with a heart defect: Take a multivitamin with folic acid; discuss all medicines (even herbal ones) with your health care provider; avoid sick people and germs; and avoid toxic cleaning products.

Have you had a test for congenital heart defects? Are you going to?"

Heart Anatomy Video

In honor of Congenital Heart Defect Awareness Week, I am sharing a must see, seriously fantastic, short and easy to understand video I recently came across explaining heart anatomy and circulation!

It is beneficial for everyone that has heart, love's their heart and/or love's someone with a broken heart.  

The heart is amazing!

Did you know that your heart beats about 100,000 times per day, pumping 2,000 gallons of blood through 60,000 miles of a network of blood vessels in your body!!! It is incredible that such an organ exists and functions and mind boggling that each one of us living on the face of the earth has one!

I have been in the CHD world for going on two years now and it is the best explanation on the heart I have seen.  As new parents thrown into the world of CHD you try to understand all the lingo, the anatomy of the heart and how all the parts work together.  This video is great for that!  It helps to put all the pieces together in your mind.  And even if you are not dealing with CHD you have a heart so it still pertains to you.  Click on link below to see: 

Heart Anatomy Video

With your new heart knowledge, if you watched this video and are wondering what Alexa will have repaired in surgery it is the following:  Receiving a new valved pulmonary artery that connects from her right ventricle to the top branches of her pulmonary arteries. The large hole between her ventricles will be patched and led up from her left ventricle to her her aortic artery. She also has a tiny collateral vein that will need to be closed off, her BT Shunt removed, and the additionla muscular vsd's patched.

Hope you enjoy(ed) it and it is helpful to some.

Surgery Date Set

You ever have that feeling when you just can't get something off your mind?

Well that's us right now! 

We received the call from Alexa's surgeon yesterday, he spoke with the cath doc and he is available Tuesday the 23rd so although the surgeon was able to do surgery on the 19th he would rather have the heart cath doc there in case he needs his assistance to close the muscular VSD's.  He says he does not expect it but would rather him be there just in case. 

So we have an official date now, Tuesday, February 23rd probably starting at 7:30 a.m.  That is officially 19 days away.  We will have to report to the hospital on the 22nd for pre-op testing and to speak with the anesthisiologist.   So that really only gives us 18 days to prepare.  Doc said to plan about a 10 day hospital stay.   He also stressed the importance of keeping Alexa healhty these next couple of weeks including staying away from crowds and germs as best as possible.

So there are many things I need to prepare.  We will also be having family portrait taken on February 9th so I'm excited about that and need to prepare for that as well.  I am happy I have been able to enjoy the visit of our cirquit overseer to our congregation.  I was worried for a while that we would be in the hospital with Alexa this week, so it's been nice to meet him and his wife.  Looking forward to rest of the week to be spiritually upbuilt.

Lot's of people ask me how I'm feeling and honestly I feel pretty good.  I have been pretty peaceful and calm.  I do have my moments when sudden fear sets in and I may cry for like 10 seconds but then I pray and get over it pretty quick becasue I realize this is for her good and we have no choice.  Mostly I'm dreading that moment when I have to hand her over but I try not to let my mind wonder in the details of the surgery, although sometimes I do, but I prefer to look past that to when she is pink, fully oxygenated and feeling vibrant!   As Dr. T. said during his visit "after her surgery she will begin to blossom with the Spring flowers."

"Do not be afraid, for I am with you.  Do not gaze about, for I am your God.  I will fortify you.  I will really help you. I will really keep fast hold of you with my right hand of righteousness."  

Isaiah 41:8

Looking forward to seeing our beautiful flower bloom!

And having our hearts rejoice!