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.

Just About 3 Weeks Old

We are having so much fun with Alessandra.  She is increasingly spending more time awake looking around with her big open eyes.  I read that babies at this age become fixated with human faces and will mock certain expressions.  With that in mind I have been making funny faces at her as much as possible.  If I stick out my tongue she will stick hers out right back at me.  Its so cute!!

We had two appointments this week, a visit with the cardiologist and pediatrician.   Both appointments went really well.  Her O2 stats are still maintaining between 85 and 90.  Her amoxicillin dosage has been changed from 1.5 ml once a day to .8 ml twice a day (250 mg/5ml).  She is doing great with her medicine and has no problem taking it.  I think we are still looking at an earlier Glenn procedure but we do not have a date yet.  The bidirectional Glenn surgery will prepare her heart for the Fontan surgery, which will probably be done at 2 years of age.  The Glenn procedure is intended to improve her oxygen saturation as she grows by detouring the blood from the superior vena cava to the pulmonary artery.   I have full confidence that she will handle this surgery well when the time comes.  

At the pediatrician office she was weighed and measured and is growing at a normal rate.  She is now 8lbs and 21.5 inches and is exclusively breastfeeding.  At the appointment the doctor pointed out that she has a bluish tint to her complexion.  I guess she always has but I didn’t notice it myself until that moment.  When I compare the hue of the palm of my hand to the color of her belly I can really see the difference.  Her color should improve after the Glenn and then will hopefully permanently improve after the Fontan.

As of now we are adjusting to our lives and settling back into some of our normal activities.  I don’t get to shower or sleep as often, it takes twice as long to pack up and leave the house, and I find myself nursing her in places I never thought I would (i.e. Famous Footwear, Target parking lot, etc.) I'll continue to keep everybody posted as she progresses. Thanks!

~Melissa

One Week

This first week has been absolutely amazing.  We are all enjoying Alessandra so much, she is such a delightful baby <3  Like all newborns her activities are limited to sleeping, feeding and pooping.  Her cries are so feminine and she is easy to console if she gets upset.  Bailey is such a proud big sister and jumps at the chance to be involved with everything, even changing diapers.  As for Mark, he is the most attentive father in the world.  I can’t even express how much I love him.  He has been strong and confident when I have been crazy and emotional.  He has been involved in every step of this journey and attends all doctor appointments with me.  I am so fortunate to have him as my husband.

Since being released from Phoenix Children’s Hospital we have taken Alessandra to two different doctor’s appointments.  On Tuesday she had her appointment with her pediatrician so that she could receive her HEP B shot and her second newborn screening test.  Her pediatrician says she is doing great, she has gained several ounces since birth weight which means we have this breast feeding thing figured out. 

The second appointment we had was with the cardiologist earlier this afternoon.  She endured the EKG and echocardiogram like a little champ, she was even awake for most of it.  Our cardiologist confirmed that she does not have any obstruction in her pulmonary veins, which is really really really great.  She has minor to medium stenosis in her pulmonary arteries, but that is a good thing given her anatomy.  If the arteries we not narrowed, that could risk too much blood flow to the lungs.  For now, it is looking like we are on track awaiting the Glenn procedure.  We are not sure when this will be, but it could be in the next few months.  Our goal now is to keep her in a “bubble” away from illnesses, help her to gain weight and continue with daily antibiotics.   

Here are some cute pictures that Mark took of our little baby.  I love being married to a photographer:)

NICU Graduate!

I’m not sure where to begin, the past several days have been mostly a blur.  I’ll start with the most important part: Welcome to the world sweet Alessandra! 

Alessandra Rose Sachet was born kicking and screaming to a team of health professionals on June 28^th, 2012 at 11:07 pm, weighing 6 pounds and 13 ounces.  She was born with heterotaxy asplenia and is thriving!  For this I thank God.  She will not need the first surgical procedure on her heart; she is doing so well oxygenating on her own.  Her O2 stats are only slightly below normal and she will turn a little blue if she gets really upset.  All the more reason to love her and keep her happy :) Her intestines look great and she will not need any surgery for malrotation.  She is asplenic and has to take daily antibiotics but that’s okay, we know we can do this.

After camping out at the Phoenix Children’s Hospital NICU for the past few days undergoing tests and monitoring, we were released today to come home as a complete family.  I am so thankful for this.  I know that we will have a challenging journey ahead but I am so happy and blessed that for now, we are all okay. 

I’ll post some more pictures soon!!

~Melissa