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