Never A Dull Moment

Tonight we are all enjoying some much needed quiet time just doing not much of ANYTHING.  Lorenzo and Beau are putting together their new remote control model airplane and Nicholas was "helping" and decided to stick a piece of foam up his nose.  I tried getting him to blow it out; didn't work.  I tried to use tweezers; didn't work.  Finally I got some of my dental instruments and was able to pick it out of there!!!  If that didn't work, we might have found ourselves on the way to the E.R.  I really didn't want to step a foot in another hospital so soon!

I realized that I didn't really explain what the doctors decided on the last day at Stanford.  They had done that last echo and it appeared that the gradient was still around 30mmHg.  Dr. Hanley thinks that the number is probably higher, but because of the bandages they could only get it to show up like that.  Also, as we wait for at least a few months, Nicholas will grow and the band will stay where it is, naturally creating more of a restriction for his left ventricle.  We go in tomorrow to our local Pediatric Cardiologist for a post-op follow up.  I will let you know how it goes.

By the way,  I hope you had a very Merry Christmas! 

Home Sweet Home

We are home.  It feels so good to say that.  We slept in our own beds, ate at our own table, and watched our own t.v. The simple things in life are what make us happy.  Sienna rememberd us (I was concerned that she wouldn't recognize us after being gone for 8 days), the big kids had the house all ready for us to come home to, and my mom was baking up a frenzy of Christmas candy in the kitchen.  Ahhh, it feels good to be home.  And all in time to celebrate this special time of the year together.

I would also like to thank everyone following the blog for your concern and prayers during Nicholas' surgery.  We have started this journey and still have a long ways to go.  But knowing that Nicholas was in the prayers of so many people, I never had a doubt that he would do well and heal quickly.  So thank you from the bottom of my heart.

Going home!!!

We stayed yesterday after checking out of the hospital so we could all have some much needed rest; we are getting ready now to leave the very gracious Ronald McDonald House.  We are just loading up the car and I will post updates as we go...

Can't wait to see the other kiddos!

Day 2 Intermediate ICU

We are still in the Intermediate ICU; we had a chest x-ray this morning and they determined we could remove the chest tube.  The team came shortly after and pulled it out.  It didn't seem to bother him much, so it wasn't too big of a deal for him.  They also repeated the echo this morning and they determined that the gradient on his Pulmonary Artery is right around 30mmHg.  We started at around 22mmHg, so there is a little improvement, but not the kind of restriction that would really force his left ventricle to pump hard and train it to take over the systemic function down the road.  We are waiting for Dr. Hanley to look at the information and make a recomendation.  We are looking at two probable choices: 1: re-band before we leave, or 2: leave and allow Nicholas to grow into the band.  This makes me feel really, really emotional.

Nicholas had a good day today.  He got to go on a WALK!  He looked like he wanted to run and jump, but thankfully we had a good hold of him and he didn't topple over or anything!  He had a few exciting visitors today, too.  Some firefighters came this morning and were handing out toys. Nicholas got a new fire truck that makes siren noises!

We also got to go to the "Forever Young Zone" and Nicholas got to meet two players from the San Francisco 49'ers! Nicholas received a Build-a-Bear from #40 Chris Maragos and he got his picture taken with #66 Eric Heitmann.  What a neat thing for these guys to do!  I think I saw a news camera from NBC, so it wouldn't surprise me if Nic is on the news tonight!

I can only hope that Dr. Hanley will know EXACTLY what we should do.  This is an emotional roller coaster and I want to get off!!!

Intermediate ICU

Today has been a busy one.  We started off the day with an xray and breakfast, then an echo.  We saw the doctors later in the morning and they said they are happy with the progress Nicholas has made.  They said we could remove all the IV lines, but we had to make a new one because the others are either unnecessary or breaking down.  So now Nicholas only has one IV in his foot.  He still has his chest tube too. 

We also got the o.k. to leave the CV-ICU.  So we transferred up to the Intermediate ICU this afternoon.  Nicholas is doing better; although he still seems on the sad side of things.  We were able to take a wagon ride, which he loved, and that perked him up a little.

We have another echo in the morning to check the banding.  Today they said it appears that the gradient isn't as high as it was during surgery.  It could be because all of the bandages prevent the tech from getting a good angle and not an exact accurate reading, or it could be that it hasn't achieved what it was supposed to.  If it reads low again tomorrow, then they will likely do more tests (I would guess an MRI and/or cardiac catheter) to get a more accurate measurement.  If it is lower than we want, we may be looking at a re-banding sooner rather than later.  More to come when I know more....

Making Progress

Just a quick update....

Nicholas was able to have his beloved chocolate moo this morning, and the first thing he asked to eat was a chocolate donut and a chocolate muffin.  Glad to see him getting a little bit of his personality back!! 

He has definately not been able to understand what is happening to him.  He seems to be "comfortable", or rather not in pain.  But he seems to be very depressed and sad.  He cries on and off whenever he is awake.  He keeps continuously asking when we get to go home.  He is begging to talk to Sienna.  So Lorenzo pulled out some video on his phone of Sienna's birthday, and Sienna doing laundry, and Sienna goofing around in the leaves, and it seems to really perk him up. 

The docs came in for rounds this morning and they are very happy with his progress.  He will still spend one night and some of tomorrow in the CV-ICU if everything continues to improve as it has.  He will get his neck IV out tomorrow hopefully, because it seems to really bother him.  The main thing they are watching is a little bit of fluid in his right lung, but they seem to think he will resolve it without intervention. So the tenative plan is to stay in CV-ICU tonight and then transfer up to the recovery ward tomorrow. 

Let the games begin...

Our brave little Nic was extubated today around 3:45.  He was not very happy about all the people in the room, everyone telling him he did such a good job, and telling him he is so brave.  I wanted everyone to just be quiet and let me and Lorenzo talk to him and explain things to him since we know him best.  I know they were just trying to make it easier for him, but it seemed to me that it made it more anxiety-provoking for him.  He could barely talk from the raw feeling left behind from the tube.  Now, a few hours later, he has episodes of crying and it seems that the real work begins.  He has been begging me for a chocolate moo (milk) for over an hour and it will probably be at least tomorrow morning before he can have anything like that.  He has not even been allowed ice or water yet.  It could be a really rough night.

Everything is stable except his "bi-carbs", which are low.  They are somewhat at a loss as to why, but they are testing his urine to see if he metabolizes the bi-carbs they keep giving him in his IV quicker than normal and maybe that is why they are consistantly low. I'll keep ya posted...

We heeded the advice from the hospital staff and went to our hotel last night for a good night's rest.  We checked out of our hotel because starting tonight we have access to the parent's lounge where we will "bunk" with 3 other families here at the hospital.  I figure that assuming Nicholas gets taken off the ventilator, one of us will stay with him at all times, and we will take turns sleeping in our little cot.  Could be interesting!

When we got to the hospital this morning, the echo had already been done and the nurse was waiting for the doc's to make rounds with the information from the echo.  It looks like Nicholas is doing very well; he is slightly dehydrated, so they are increasing his fluids, but other than that, the left ventricle seems to be handling the new work load well.  He has had episodes of low blood pressure, which could either be related to the slight dehydration or could be from too much sedation, so they are still trying to get his meds just right.  They may have to give him some lasix, which is a diuretic, to help him urinate if they don't see more urine output after increasing the fluids.  They also have started decreasing his dopamine, which helps the heart contract, to see if he can handle the new work load without meds.  He woke up today and we got to talk to him and explain a little about the tubes (which I might add he is not very fond of) before he drifted back to sleep.  He looks pretty uncomfortable, not from the incision, but from the tubes in his mouth, nose, chest, IV's in both wrists, and one in his neck.  So as he gets stronger and stronger, he should be more comfortable.

The team is monitoring his vitals as they continue to decrease the meds; and when he meets the criteria they are looking for, they will extubate him.  That will probably happen this afternoon.  I'll let you know!

Thanks again to everyone for your thoughts and prayers and all the help we have and are receiving back home!

CV-ICU (CardioVascular Intensive Care Unit)

After hours and hours of waiting, we finally got to see our boy....and to those of you who know me, you know that I am not typically afraid of medical things.  I like to watch it on t.v....I work in people's mouths each day at work....but there is something very, very different about seeing your child on a gurney with tubes and bandages and monitors and in a medically induced coma.  I nearly fainted twice and almost threw up.  I had to leave.  Which is completely opposite of what I expected of myself.  He woke up at one point when they were trying to get the right balance of pain meds and sedation meds.  The nurse, Dorothy, was attempting to suction his breathing tube and he immediately woke up and started trying to pull the tube out of his mouth; he was coughing and it looked like he was drowning or something.  He saw me there and I didn't know what to do; Dorothy had to hold him down, so he wouldnt pull the tube, and she told me to go to the nurses station to get help.  I ran down the hall and another nurse came in and they were able to adjust the sedation meds and suction and settle him down.  Apparantly this is a good sign, meaning that he is healthy and fighting to get better.  Simultaneously very scary.

There are so many sad-looking families here.  The only thing I can think of is "pick your poison".  They are not all heart families; I have seen little kids with no hair (cancer); I have seen tiny babies being wheeled out in incubators; I have talked to a family whose 2 1/2 year old little girl has a possible fatal case of strep A and may have to have her fingers and toes amputated.  It is just so horrible that people have to go through this.  But in the same breath, I am so thankful we are here and have an amazing team helping our Nicholas.

Nicholas will be intubated until tomorrow mid-morning, when they will start weaning him off the ventilator.  As he takes on more of the natural breathing function and his heart responds favorably, they will eventually take him off the breathing machine.  Then we can expect to stay for a couple more days in the CVICU and when he passes all the criteria, we will move upstairs to the recovery rooms for a few more days.

I'll keep ya posted.  Love to all who are thinking of and praying for us.
 

Surgery day

Nicholas with Clarice and Rudolph, under the spell of silly juice

I got up this morning at 3:45 a.m. to get ready for the surgery today.  It didn't go as smoothly as I would have liked; Nicholas was on to us that something greater was going to happen today than the past appointments he has so bravely gone through.  He was not as compliant as usual; he cried in the shower, he cried getting dressed; he cried in the car.  All the while, Zo and I tried to stay stoic and strong.  He was first getting in to pre-op, and they gave him his "silly juice", which really helped him relax.  Then they took him away.  Then came the tears.

We were taken to a family waiting room, and we then got to meet the infamous Dr. Hanley.  The nurses and fellow doctors we have met all talk about him like he is a god himself.  And they say these things with real conviction, not sarcastically.  So we sat down with him and he started at the beginning, explaining Nic's defect and really helping us understand what we are dealing with.  He was very real and compassionate.  He said that they will go in and carefully monitor his left ventricle until they get the pressure gradient just right and then band the pulmonary artery.  He said that we are doing the right thing. 

He also explained that usually about  75-80% of the time they will have to re-band.  This was kind of news to me; I was under the impression that they only have to reband 20-25% of the time.  So most likely we will have a second open-heart surgery to reband, and then another 6 months of waiting, and then about a year from now, we would do the double switch.  He explained that this is not a guarantee; that it might not even work.  But the alternative is to watch and wait, and at some point in time Nicholas would be in full heart failure and need a heart transplant.  So what is worse???

For now, we will wait as patiently as possible.  I will write more later when we see our boy.

Pre-op for Pulmonary Artery Banding

We are here in our little hotel room just trying to stay preoccupied while we wait for tomorrow.  We had a busy day of pre-op testing and meetings; everything went smoothly for the most part.  We got to the hospital at 7:30 this morning and started with an echocardiogram, followed by an EKG.  Nicholas did awesomely for these tests.  After that, we had 2 chest x-rays, and then met with the anesthesiologist Physician's Assistant, Chloe.  We had a Child Life Specialist, Jeanie,  come and take Nicholas on a tour while we had our first meeting with the Surgical Physician Assistants.  They explained what we should expect after the surgery, and gave us a list of possible complications during surgery.  They gave us chlorhexidine wipes that we have to wash him with tomorrow morning before we leave our hotel.  They answered all of our questions.  After that, we did the last test I was dreading, the blood draw.  Last time we were here, he kind of freaked out, but they did such a good job that he didn't realize what had happened.  This time, he remembered the blood draw room and it was really hard to hold him there (four of us) while they took several vials of blood.  He was burnt out after that and begged us to go back to our hotel where he could just watch a movie and have a little "siesta".  We slept for 3 hours!

All of our questions have been answered and we are about as prepared as one can be before giving your child up for this life-changing open-heart surgery.  One thing that was interesting to me was that the Pulmonary Artery Banding procedure is relatively simple; on a scale of 1-10 the Physician Assistant rated it at about a 2.  The entire procedure should take about 1-2 hours, but Nicholas will be away from us for about 4 hours.  He will likely be in the cardiac ICU for a few days, then he will transfer to a regular recovery room for a few more days.  Hopefully we will be home by Christmas. 

I am so thankful for all the prayers and well-wishers leading up to this point.  Mostly I have kept it together up to this point, but I have had moments where I just want to cry.  If it is possible to be glad, I am glad that Nicholas is in such good hands, and I am glad that there is a surgery to make his life better.  I am glad that we have family helping us out and taking care of our other kids so that we can focus on Nicholas.

Speaking about the other kids, I really miss them.  Kayleigh is starting finals tomorrow, Beau doesn't think he can focus to go to school, and Sienna apparently keeps looking out the window looking for us.  I hope they are all ok. 

Note the cute dinosaur slippers on the picture on the right: Auntie Ny got those for him the day before we left and they have been a huge hit!  He wore them around the hospital and had many admirers and made many people smile.  Nicholas was pretending that he was a dinosaur (specifically a t-rex) all day.  He was his usual animated self, and I am glad he had a good day (minus that dreaded blood draw). 

It's not about turkeys!

We made it through Thanksgiving, and I would like to acknowledge that I have much to be thankful for.  Often it is easy to feel sorry for ones self and feel like everything really stinks.  But I have a husband who loves me and my kids who bring such happiness to my life.  Really, there is not much else that matters and no matter what happens, I will know this to be true. 

Lots of people have something that they probably want to wish away. I know my wish would be for Nicholas to have a perfect heart.  But he doesn't.  So I can be thankful that he is in good hands and I know that we are being the best parents we can be.  I am thankful that we have found doctors who can give him hope for a normal life.  I am thankful for all the people who have been and will be praying for our family.  I am thankful for the support of our families and friends.  Thankful.....Full of thanks.... 

Thank You!!!

Ignorance is Bliss

Yesterday we got the official instructions in the mail from Stanford.  I cautiously read through them and I, being one who desires to understand the ins and outs of everything, feel reassured that we are in the best hands and feel confident that we are doing the best thing for Nicholas.  My dear husband, however, feels even more scared about the future after reading these pages and pages of information. 

This is the scariest thing either of us have ever faced in our lives.  Nicholas has never looked sick.  Only when he is really active can you hear him struggling to breathe and his lungs rattle and he coughs.  But otherwise, he is just a normal kid.  So it is very difficult to accept that you are about to put your child through a very scary, and somewhat unknown outcome of a surgery.  He has no idea what is going to happen here in about a month.  But it will surely change all of our lives forever.  I can only hope and pray that it is successful and that Nicholas will be one huge step closer to having a long and normal life. 

I will continue to research and learn about this defect to fill my craving of knowledge.  But sometimes I think it is just as simple as being present, not filling your mind with all the details, and that is the contribution you make to the situation.  Lorenzo and I are like that.  He is my rock and has been there for me since the day I met him.  I don't doubt that we will make it through this...we just will deal with it in our own ways.  I will be the rock for this one.

So.....I did it!!!!

Today I ran my first half-marathon!  Training for these long runs is very time-consuming, so I had never even ran a full 13.1 miles up to this point.  I felt great until about mile 11.5, and then my body (mostly my knees) started to kind of ache.  But I kept going, and finished with a time of 2:24:38.  Not the fastest runner out there, but I finished!  I made it running the entire way, too.  Which was not my plan.  I figured I would have to walk/run/walk/run...but I just kept going.  I did stop for one "potty break" at mile 4.  Wow, what an accomplishment for me.

When I left the house this morning, I got all teary-eyed.  When I crossed the finish line, I cried. I just got so emotional because I fully dedicated this feat to my Nicholas.  I feel so passionate about raising awareness for CHD's.  I don't know exactly how I'm going to do it, but I'm going to do it.  I envision a fun-run with Congenital Heart Disease as the cause.  I just feel like people are so uneducated about CHD's and so many people will have a child born with a defect.  I surely didn't ever think this would be part of my life.  But it is, and I am trying to figure out how to make a difference, even if a small one.

To those of you reading this, I challenge you to do something physical....make your heart happy.  I realized today that you don't have to be first place; you don't have to win the race to succeed. Rather, you have to set a goal and work to achieve it.  Start small.  Walk one mile.  Then jog one mile. You can do anything if you put your mind to it and your heart in it.

My Nicholas may never be a runner.  I don't know what his future holds.  But from this point forward, I will value MY heart and make it happy from now on.

Hmmmm....Makes Sense (From October 27)

So normally I would be a work right now, but instead I am home with the little kids.  Nicholas woke up at 3:15 a.m. vomiting dinner from the night before.  The funny thing is, is that Sienna actually slept the entire night and when Nicholas started stirring, I was very surprised that she hadn't woke me up like she has been at 1 a.m. for the last week straight.  So I guess we just can't catch a break here!  Needless to say, Nicholas threw up every 15 minutes or so for a couple of hours and here we are at home for the day.

It kind of gets me thinking...it makes a lot of sense that the docs at Stanford want him (and Sienna) to be home for three weeks before and after surgery so he isn't around any bugs that are making the rounds.  So we will have the little kids home from around Thanksgiving until after the New Year. 

Gotta Get Moving!!!

So much to do!!!  I have been feverishly trying to get my "ducks in a row" now for weeks, even months.... It seems like every day there are phone calls, appointments, activities, etc, and never a dull moment to top it off!

I am anxiously anticipating what the future holds, but have made some new friends along the way.  I attended my first support group meeting this week for parents of CHD kids.  Mended Little Hearts is the group.  I think it will be a tremendous support for me and my family.  I met several other mothers who have already gone down the road of surgery....set backs....progress....and all the various roller coaster of emotions that come with having a "heart child". 

It is interesting to me....all the parents I have met are just like me.  Normal, hard-working, every-day average citizens.  You wouldn't look at us and think we have children that have such serious issues with their hearts.  We are parents that want the best for their child(ren).  We are moms who did all the right things while we were pregnant.  We didn't choose this.  But we are fighters and will do whatever it takes to give our kids the best treatment and advocate to make their lives better.  I have a renewed spirit and am going to try to raise awareness and do my part to help other families who have a child with a Congenital Heart Defect.

My first opportunity to raise awareness is coming up this weekend.  I have been so-so training to run a half-marathon for some time now, and will be completing my first one on Sunday.  I am going to wear the shirt from Mended Little Hearts so other runners will see it.  This is going to be my new "cause".  Every running event I take part in, I am going to wear something relating to CHD.  My boy didn't choose to have a bad heart; I can make my heart healthier each time I exercise, so I am dedicating this first long run to my Nicholas. 

It is just so unfair

Today is October 22 and in a few weeks my Nicholas will be another additon to the "zipper club" and will sport a 3 1/2 inch scar down the middle of his chest. I can't help but feel totally helpless...I feel as educated about his defect as I can be, but completely unprepared for what lies ahead. In most things in my life, I try to be prepared, to have an idea of what I need to do for whatever it is I'm doing. But with this heart surgery, I can't seem to grasp what it is that I need to do to get ready for my sweet boy and what it is he will be going through. I am depressed. I am scared. I am anxious. I am moody. I am emotional. I wish I had a crystal ball...I just want to see what lies ahead for Nic and for our family.
I know he will be in good hands. There are just so many "what-ifs". I know he will have a theoretical better life. Without the surgery, he will most likely need a pacemaker by his twenties; he will most likely suffer heart failure by his thirties; he will be limited with exercise and sports...the list goes on and on. You look at my Nicholas, my loud, rambunctious, outgoing boy, and you don't think there could be anything wrong with him. It is just so unfair.

Congenital Heart Defects--Please watch

Introduction

So I am going to try out this blogging business...I feel like I need an outlet of all my emotions brewing inside of me.  I hope to be able to unload some of my stress through writing this blog and also keep friends and family informed of what is going on.  Hopefully I will meet some other parents of kids with CHD as they can surely sympathize and fully understand these feelings.

Nicholas is our third of four children.  He was born January 9, 2007.  He was my biggest baby--8lbs 14 oz!!!  As far as we knew, he was perfect.  We did not have any inclination that anything was less than perfect until he was 6 months old.  I took him to the doctor because I suspected he had an ear infection.  The pediatrition was concerned that she heard a heart murmur and referred us to a pediatric cardiologist.  I researched heart murmur prior to the appointment and convinced myself that nothing was wrong...95% of murmurs are "innocent" and either go away or are nothing of concern.  Boy was I surprised to find out that my Nicholas has a very complicated heart!  After hours at the doctor's office Nicholas was diagnosed with Congenitally Corrected Transposition of the Great Arteries (CCTGA) a.k.a Ventricular Inversion or l-tga; Mild Sub-Pulmonic Stenosis; a moderate Ventricular Septal Defect; a small Atrial Septal Defect; and mild Tricuspid Valve leakage.  What this means, is, that the bottom chambers, or ventricles, developed on the wrong side of his heart, and the arteries that carry the blood to his lungs and body are connected to the wrong ventricle.  So its a case of two wrongs made a right i.e. "congenitally (occuring before birth) corrected (the blood flows in a circuit) transposition (backwards). 

To make a long story short, Nicholas has not had any surgeries since his diagnosis.  However, with our wonderful Pediatric Cardiologist, Dr. Stanley Wright, we have met with the best doctors and surgeons at Lucile Packard Children's Hospital at Stanford University and Nicholas will soon be undergoing his first of at least two open heart surgeries. 

I will try to write frequently and let you know of any updates as they come!