A New Heart

 I have been meaning to post something about the outcome of Alessandra’s heart surgery but it’s been hard to find the time.  Her surgery was last Monday (11/19) and everything went perfect!  Her surgeon, Dr. Nigro, came to the hospital on the Sunday before to go over some final details and to answer any questions we had. He came into our hospital room when I was getting out of the shower. I thought I heard his voice so cut myself shaving, threw on some clothes and swung the bathroom door open (I almost slammed him with the door…{gaaah!}).

The entire surgery lasted about 3 hours.  It was the longest 3 hours of my life but we had a ton of support from family that showed up at the hospital to wait with us.  The procedure was better than expected; Ali didn’t need bypass or any blood products.  We were able to see her shortly after the operation and she looked so beautiful.  Her lips and fingernails were so pink!  CHD babies tend to be dusky in color and I had grown so accustomed to her purplish tint that it was incredible to see my sweet baby peacefully sleeping with her new rosy complexion.  A few hours after the operation she was extubated and breathing on her own without trouble. 

For several days the amazing and brilliant nurses at PCH have carefully managed the worst of her pain.  We are still in the hospital as she recovers but she has been weaned off most of her pain meds.  She is now down to just Tylenol and ibuprofen (along with heart meds and antibiotics, of course) and is doing well.  She smiled for the first time today.  She is so strong!!

The only complication we have had is with her chylothorax.  During surgery, her thoracic duct must have been disturbed and now she has a leakage of chest fluid.  This is a common issue after heart surgery and she still has a chest tube in place to help drain the fluid.  The sad part is that the treatment for chylothorax is a diet of non-fat formula for six to eight weeks.  This means that she can no longer take in breast milk. I wasn’t ready to stop nursing and the Enfaport formula doesn’t seem to sit well with her.  I’m still going to try to pump and store breast milk, hopefully my supply can last several weeks this way.  Also, since Ali isn’t quite meeting her feeding quotas she needed to have an NG tube placed (a thin tube that goes through the nose and into the stomach) for feeding.  She hates it and I feel so bad for her.  I know she will get used to it the way she has had to adapt to all these terrible things.  Hopefully she won’t need it for long.

These past two weeks have been so rough for Ali.  Thank you all for your healing thoughts and prayers.  They have been well received and she really needs them.  She now has a pretty neat scar down her chest that we are very proud of.  I will post pictures once she’s able to lose some of her leads and plastic accessories.  Poor kiddo has been through more in these few weeks than many will endure in a lifetime.  The fact that she is already smiling shows the magnitude of strength in the human spirit.  I’m so proud of her.  

I’m also so proud of Bailey! Poor kid has been living out of her backpack for two weeks being bounced around back and forth between my mom’s house and her dad’s.  Every time she visits she shows only her unselfish concern for her little sister.  What an adaptable kid, and if you don’t mind my bragging I want to mention that she got all A’s on her midterm this semester (!!!!!!!!!!!!!!!!!!!!)!

I can’t wait until we can all be home again.

~Melissa

night before

Ugh, this is tough.  We have been here nearly a week now and for the most part it has been HARD but not bad.  It's stressful seeing my sweet baby with oxygen tubes and a variety of leads taped to her, but once she got used to it so did I. It's scary when alarms go off every time she desats.  Its really scary to see her numbers drop to the 30s.  I can't imagine what that must feel like for her.   Until now I dreaded the idea of heart surgery.  I know she's ready for it and I'm ready for her to get better. 

Today was probably the hardest day since we have been here.  She needed her pre-op blood-work drawn which is extremely difficult for a baby like her. Not only does she hulk-out, but she's chubby and her veins are hard to find.  Another challenge is that her blood is thick and clots quickly rendering some samples obtained useless. She's had several rounds of pokes today and it was rough.

Like I said, it has been really hard but not bad.  When she desats, its just momentarily and then her levels climb back up.  She has been tested for viruses and infections, all of which have been negative.  Since being here she has reached new developmental milestones.  We are blessed that our experience here has been good.  I wanted to share this video.  I think it shows how amazingly resilient these kiddos are.  Ali will overcome this with squealing laughter.

I really appreciate all of you who have been following our journey and keeping Alessandra in your thoughts.  Tomorrow around noon she will have her heart surgery and I would really appreciate your prayers. 

Thank you <3
~Melissa

Waiting...

We have been back at PCH since Monday night.

So....what happened..??

To be honest, we are not really sure.  When we brought Alessandra home after her cath she just didn't seem right.  I know that she went through a lot and I never expected her to feel and act 100%.  Monday night we felt uncomfortable because her cry was new and she wasn't eating as much so we brought her to the E.R.  She fussed and cried non-stop from about 9:30 p.m. to about 2:30 a.m.  My head of new grey hair can testify.

Finally, around 4:00 a.m. we were moved to the cardiac floor.  She needed a dose of Versed to calm her enough to place an i.v.  Blood was taken and tested for viruses and/or infection.  Thankfully all samples have come back negative.  She's not sick, but she's acting sick.  She's ready for surgery.  That is the only explanation we have right now.

We will remain in the hospital until she has her surgery and for the duration of recovery.  We don't know when her surgery will be yet but my guess is that it will be early next week.

For now we sit here, watching her.  Keeping her calm with toys and Bob Marley.  She is on constant O2, but has thankfully grown accustomed to the tubes in her nose and the wires on her hands, feet and chest.  This has done wonders for her demeanor.  She's even starting to smile again.  It's been days since I've seen her smiling gums so this makes me very happy :)

~Melissa

That was scary.....

As many of you know, we went in to Phoenix Children’s Hospital for Ali’s cardiac catheterization procedure on Friday.  A cath is relatively risk free and it’s important to have done before heart surgery to make sure there are no surprises.  The procedure involves taking a thin flexible tube and inserting in through the groin and allowing it to travel through the heart.  The cardiologist is able to test blood o2 levels, measure pressures and get some decent pictures of the heart.  After the procedure there is usually some soreness which is treated with Tylenol. Piece of cake, right? …that’s what I thought too.

The cath procedure was actually flawless, we met with the cardiologist, Dr. Graziano beforehand and we felt really good about him.  He has 30 + years of experience and explained the procedure very well to us.  We met with the anesthesiologist before hand too and she was also a veteran doc.  The entire time Ali was in the care of some very gifted people.

One of the things that Mark and I always do when we meet new doctors and nurses is that we explain Alessandra’s personality.  She is very particular (which is a nice way of saying she’s a little cranky-pants).  We don’t let her cry at home.  She has trouble breathing if she cries too hard so we are at her service the moment she starts to fuss.  We know all the little tricks to calm her down and make her happy.  We have it down to a science because that’s the way it has to be with her.  If she wants to be rocked, then it has to be an upward and downward motion. Never side-to-side.  If she is rocked from side-to-side she is extremely offended and throws a fit.  If she’s hungry, we feed her.  No waiting, no sleeping through the night.  But like I said, we have it down to a science.  We know what to do to keep her happy and most days she won’t even cry at all.  Obviously, we can’t protect her from the doctors.  They need to poke at her and bug her.  I always feel better if I know that the doctors understand my baby.  I want them to know her personality because I feel like it should be an integral part of any plan.  Treat the person, not the symptoms, right?  She’s not just a baby with a heart anomaly, she’s Ali. She’s the boss.

I had to explain all of that about her personality because it’s an import part about understanding what happened the other night.

Before her cath she had to be put to sleep with anesthesia and was intubated.  After the procedure, which lasted about an hour.  She was extubated, carefully weaned off of the anesthesia and given Dexmedetomidine as a sedative to help her awake slowly.  This works fine for about 90% of the kiddos.  The moment the anesthesia started to wear off Ali was awake and fighting.  They doubled the dose of dex to calm her back down but it did nothing.  She was fighting to cry and scream, which made it difficult for her to breath.  Her o2 was dropping and her vitals reached a dangerous zone.  She was put on oxygen and we were called back to help calm her down. She had an oxygen tube in her nose, an iv line in her forehead.  Her eyes were puffy and her voice was raspy.  She was trying to scream but her throat was sore from the placement of the tube.  My initial instinct was that I wanted all the stuff off of her. I wanted the tubes out the iv out, I wanted hold her and rock her and calm her down. But that was way too risky.  It was a complete catch 22. She needed those things to monitor and help her, but those things were pissing her off and was the source of the problem.  She was so worked up that her o2 saturations dropped into the 30s which is a very dangerous level.  Some more docs were called in and she was given a dose of morphine.  Might as well have given her water. It did nothing at all.   The doctors were so perplexed and kept repeating that the morphine usually works.  They gave a 2^nd dose and to everyone’s astonishment (except for mine and Mark’s), it again had absolutely no effect.  I didn’t take a picture of her, I didn’t have to, I will never forget, but for those of you that are wondering this is what she looked like:

Finally they tried a sedative not normally used on babies because its more for anxiety in combination with some nitrous oxide and that worked well for her.  She fell asleep and started to stabilize.  Her sats still weren’t high enough so she needed a blood transfusion to help her out.  After the blood things quickly started to get better. She was weaned down to just Tylenol every couple hours and off the o2.

We were released the next morning and have been taking it easy at home ever since.  She’s not her normal self yet.  She still hasn’t smiled for me.  She has some extra fluid from the anesthesia and is coughing and sneezing a lot.  She was given a dose of Lasix at the hospital to help her release some of that fluid build up.  She’s not 100% yet, but she’s comfortable.  She’s eating well and sleeping a lot.  Her bruises are pretty gnarly and she has needle holes everywhere (that’s the downside to having a chubby baby, it’s too difficult to find her veins for iv placements), but she is home.

I really want to thank all of you for your support.  I know that we had a lot of people thinking about us and we felt the love when we needed it the most.  We had a lot of support and warm thoughts and I am so indebted to you all.

Ali before the procedure :)

Ali this morning :(

 

Much love,

~Melissa

We Have the Date

November 28^th.  Last Friday we met with Dr. Nigro, the surgeon that will be performing Alessandra’s heart operation.  The meeting went well, the tone was positive and we went over some things we already knew and discussed some new things as well.

Just to recap- Ali has a single pumping chamber, whereas a normal heart has 4 chambers.  Chamber walls cannot be built so instead staged surgery is required to redirect the blood flow to distribute oxygenated blood more efficiently than it does in her current state.  We have been told that the purpose of the Glenn is not necessarily to boost her O2 levels, but to take some of the pressures off of her heart so her little body wont have to work so hard.  This will be done by re-routing the superior vena cava into her pulmonary arteries.  Another interesting anomaly with Ali’s heart is that she has TWO superior vena cavas whereas the rest of us have one. Her heart will still point to the right (dextrocardia). 

Her surgery will be on November 28^th.  We will be at Phoenix Children’s Hospital while she recovers.  For recovery time we can estimate about a week.  I think she is going to rock through this and we will be there for the minimal time necessary. 

Bypass probably will not be necessary, but blood transfusions will be.  I need to verify that I’m the same blood type as Ali (I think I am? I should know this…) so that I can donate.  The surgery itself will be about three hours.  Her pain will be managed carefully.

Before her surgery (in the next 1-2 weeks, we don’t have the date for this yet) we have to go into PCH for a day or two for a cardiac cath procedure.  This will be done through her femoral artery.  She will have to be intubated and put under for this.

So….yikes.  This is a lot.  It will be the most difficult time of our lives but I KNOW she will be fine.  She is such a feisty little thing.  We can do this.

~Melissa