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:)

Baby Steps

I’m huge……My stomach is a giant beach ball, I can’t see my feet and maternity clothes are so, so dorky.  I’ve started wearing what were originally designed to be dresses for normal-bodied girls as t-shirts for my misshapen body.  It’s okay though, looking like a dork is something I can handle.

We met with the Cardio Vascular Surgeon (Dr. John Nigro) last week at Phoenix Children’s Hospital.  He answered many of my questions, but was careful not to make any predictions or assumptions.  If our sweet baby is born with her heart as expected, or better than expected then the two operations she will need are the Glenn and Fontan procedures.  The Glenn operation will be around 2 months of age and will reconstruct her heart in a way that will improve circulation enough to sustain her until she is about 3-4 years of age.  That’s when she will need the Fontan operation which should help sustain her until early adulthood. 

There is so much about this that scares me because the ‘what-ifs?’ are endless.  ‘What if she doesn’t have a spleen? Will she recover okay from the operations?’ ‘What do her pulmonary veins look like? Are they obstructed?’ ‘What if her condition is painful for her?’ It’s easy to get caught up in an endless cycle of troubling thoughts but I try to remind myself to be stronger than that.  This might seem off topic, but do you remember the movie ‘What About Bob?’  Mark and I just watched this movie recently and Bill Murray plays a multi-phobic patient who worries about everything ranging from germs to having Turette’s syndrome. His psychiatrist gives him two solid pieces of advice: 1). take baby-steps and 2). take a vacation from his problems.  Maybe I’m going crazy myself because I’m trying to take the advice from a movie-shrink but the two principles ring true.  I can’t plan out the next 5 years of my life, but I can take issues as they come each day.  So far, my priority is maintaining my health and working on a birth plan.  This is something I can manage each day.  Also, I can’t focus on all the risks without getting depressed so instead I try to focus on all the possibilities.  Technology, medicine and surgical practices have advanced so much over the years; there is no telling what these humans will be able to do 10-20 years from now.  I’m afraid of losing my daughter, but I don’t have to worry about that because I know there are just as many opportunities as there are risks.  This baby doesn’t need a mom who is going to be troubled and scared, she needs a mom who is going to be punk-rock and proactive.

After meeting with the surgeon, we got a tour of Phoenix Children’s Hospital.  That place is really really nice.  Everything is clean and designed so creatively.  It feels more like Disneyland than it does a hospital, and I’m grateful for that.  From what we experienced, the staff was so happy and positive. I think that someone has to be pretty special to work there.

Yesterday, I had my OB appointment and received nothing but good news.  Our baby girl is 4.5 pounds already and is developing great.  Her fluid measures are all normal and her heart rate is perfect.  My health is pretty good also.  My blood pressure is fine, my (ummm…what is another word for urine that sounds less gross?)  tests are reporting that all my organs are functioning as they should and that I’m well hydrated.  Even though everything is going great pregnancy-wise, my doctor still recommends that I begin the non-stress tests (NST) now that I’m 33 weeks.  This means that I have to go to the office twice a week (ugh) so that the baby’s heart rate and my contractions can be measured for about 20 to 30 minutes.  It’s difficult because I’m still working and trying to accomplish work and doctor appointments will be challenging, but it’s worth it to know that we are taking the necessary precautions to take care of this baby.

(We are almost decided on a name, I’ll let everybody know soon!!)

Melissa