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

3.5 Months!

We have had so much going on since my last update on Alessandra.  Firstly, she is a laughing, smiling 3 ½ month old!  Her personality has developed greatly and she is so sweet.  Her cheeks are HUGE and her arms and legs are chubby.  She’s starting to grab at toys and bring them to her mouth to chew on.  She smiles and laughs when she’s in a happy mood.  She screams with rage when things don’t go her way.  Needless to say, she keeps us on our toes.

A few days ago we had her cardio appointment and she is weighing in at 12.5 lbs and her O2 range is still in the 83-86% limit.  Her lungs sound great and she is outwardly a perfect picture of health.  This time we left the office with some homework: 1) schedule her monthly RSV shots and 2) Schedule a consult with her surgeon, Dr. Nigro.

We are getting close to surgery time.  We don’t have a date but it’s likely to be in November.  This part is hard for me to write about, it always is.  It’s easy to brag about how healthy she seems and how cute she is.  It’s difficult to write about the nightmares and fears that I have…so I wont.  Instead, I’m going write this because I believe it: She will be strong and fearless.  She will get through surgery and she will recover fast.  It wont be easy, but it will be ok. <3

Heart Baby Home

Heart Baby Home is a fantastic resource for CHD.  The website provides descriptions and images of various heart defects that can be shared and re-posted.  I had emailed Nanette at Heart Baby Home because I couldn't find an image that matched Alessandra's heart.  Shortly later she provided me with a link (http://www.heartbabyhome.com/2012/09/single-ventricle-avsd-c-tapvr-dextrocardia-ps-vcra/) to her website and an image that matched Ali's heart as well as some very informative text about her various conditions.  How cool is that?

 

Pictures :)

Smiling

I think it has been a few weeks since my last update, which is a good thing because that means we haven’t had any unexpected news or non-typical doctor visits.  Ali is almost 2 months now and she is pure joy.  She’s getting chubby, interacting with us and wiggling all the time.  She’s “talking” and cooing and smiling with her eyes.  I’m trying so hard to get that first ‘social’ smile, but she’s not giving it up yet.  Once I thought she was going to because she made an expression I had never seen before.  I held her really close to my face trying to get that smile, but instead she threw-up. All over my face.  I swear she did a little smile right after that.

Bailey started 5^th grade and has brought home all sorts of germs.  We have been so good at hand washing, sanitizing and changing clothes out of fear of Ali getting sick.  Since she doesn’t have a spleen, it will make fighting off infection much harder.  Somebody is watching over her because regardless of our efforts to live in a germ-free zone, everyone except for Ali got sick this week.  I took her to the pediatrician yesterday just to get her lungs listened to and her O2 sats checked and she is doing fine. Hopefully this means that the combination of her daily dosage of Amoxicillin and the antibodies she is receiving from nursing are keeping her well protected.

Ali taking her meds:

!!!!!!!!!!!!!!! In the middle of writing this post Alessandra gave her first smile! She wanted attention so I lifted her from the swing and cradled her.  She looked up at me and smiled. A real smile! Her first smile.  I’m so happy this happened right now so that I can add this milestone (smilestone? I’m a dork) .  I never want to forget it. !!!!!!!!!!!!!!!!!!!!!!!!

As far as the rest of our life goes, things have been fantastic.  My family put together an amazing baby shower for Alessandra.  My sister-in-law, Ann is a creative genius, especially in the kitchen.  We had tea, white gloves, and food.  It was so much fun.

My thoughts are all over the place this morning.  Ali’s surgery will more than likely be in October.  Her O2 levels are in the mid-to-low 80’s range and we can do better than that.  I’m trying not to think about it too much because its scary. My own heart aches at the thought of her going through this.  I’ve known since 20 weeks gestation that she would need surgery on her heart, but there is really no way to prepare for this.  I can’t imagine giving up my seemingly healthy baby to surgeons, knowing that she will be so very sick and miserable after.  I can’t even think about this. Ugh.

Thanks for reading,

~Melissa

Allmixedup

Some crazy word mix-ups Bailey has said this summer:

“There are bugs in our house, we should call a Terminator.”

“…you know when one company absorbs another company and they have to fire people they give them a leverance check.”

“Aww, her little feet are soo big…”

“bull-doizer.”  (bulldozer)

“One time at the zoo I was looking at the Zombies…I mean Zebras.”

(As we were driving past a dive bar called Dizzy’s). “Gross, who would go to a place called Disease.”

“Let’s set this joint on fire!” (I think she meant, ‘let’s blow this joint’….I hope).

“The Matrix-System.”

“Tobacco sauce”

“I put pico de mayo on it…”

“epi-tocin” (contraction between epidural and Pitocin)

“Go! They’re getting a tail on us!”

...and there is one more mix-up about octopus tentacles that I'm not allowed to post.