Another Day Another Appointment

Yesterday we had another ultrasound and met with Dr. Rose she really is awesome! Doesn't our baby boy have the cutest little profile? (okay maybe I'm biased) I again asked about an amnio and  I am starting to think it's a good idea, the way I asked was "if I was your daughter would you recommend that I get an amnio?" and her answer was "yes". That summed it up for me I know it is optional, I know that I don't have to do it but, the risks are smaller than the benefits. I want to know all I can, also it could change the plan for delivery if there is something that is considered terminal they would just allow me to hold him until he was gone rather than wisk him away and connect the many, many tubes, to me this is so much more peaceful and it is what I would want in that situation. I pray everyday that is not the case but I still keep in mind this might happen. Other than that everything else is mostly the same the heart still looks abnormal (this is all they can see with out the echo, which we have another scheduled on October 7), the amniotic fluid is still on the high side of normal, he is measuring 31 weeks 5 days, I am only 29 weeks 2 days, and everything else appears to be normal. We are praying this is an isolated defect rather than a hint of an underlying condition. Dr. Rose has been so kind to take over my prenatal care, I now no longer need to go to my original OB since he would not be the one to deliver me I figure that it is one less appointment that I have to get a babysitter and make it to :)

Just a few quick facts for today:

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  

Well at least some things have been decided...We will be moving October 1 yeah! I have to say I am stoked to FINALLY have our own place again! Grace's Dr. Seuss Birthday extravaganza will be on October 17 at our new house! and I will be delivering at the U (I may have said this already, although I am happy it is decided) oh, and I think that our son finally has a name, it will be ... "drum roll" ... Jaxson Alexander. Now that I am writing this I am think no that's not it... I just don't  know naming a boy is hard work! He needs a name I can't just keep calling him baby boy!
I've started a calendar to keep track of our many appointments, it is rather daunting to look and see a doctor appointments ever single week in September. and I'm certain that as I go to these appointments I will make more appointments one for every week in October I'm sure :)

CONGENITAL HEART DEFECT
Somewhere....someplace...today....
A family is waiting to hear.....
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace...today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought...this cannot be...
I too...know just how this feels..
This happened to ME...
Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room..
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.
Somewhere...someplace...today...
A child's growing fast...
Smiling, laughing, thriving...
Her mom thinks...can this last?
It's almost easy...to forget
That anything is wrong...
Somewhere...someplace...today...
Her child seems so strong.
Somewhere...someplace...today...
A little girl fights...just to live...
A father holds her tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that she might die...
Somewhere...someplace...today...
A family says goodbye...
Somewhere...someplace...each year...
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
My life has been forever changed by a heart defect.
                                               -author unknown
I've read this poem time and time again, each time it weighs heavily on my mind. I want to know all that I can about my child and what will happen. I wonder how things will be, what will happen to my daughter while we are caring for my son. I wonder what my son will look like and I am so scared to see him laying in that hospital bed. I guess it's starting to set in ... This is actually happening to us. 

Diagnosis

Today at our cardiologist appointment we received a diagnosis on baby boy's heart. He has been diagnosed with Coarctation of the Aorta which basically means that there is a narrowing of the major artery from the heart to the body. The narrowing decreases the blood flow to the body and makes the heart pump harder against the smaller then normal opening. The repair for this is generally pretty simple it is done through the left side of the chest. The most likely option is called an 'end to end anastomosis' where the narrowed portion of the aorta is cut out and the two ends are sewn together. This procedure will happen about 3 days after birth. In baby's case he also may have a problem with the lower portion of the Aorta where the blood flows from the left ventricle it should be about 4 mm at this point and is only 2-3mm this is something that is rather hard to measure while still in the womb and will be reassessed (as with everything else) at birth. The fix for this is not as easy and would require open heart surgery if this needs to be done both issues will be repaired in one surgery about 3 days after birth. The latter is a much more complex issue and there are many factors that will lead the cardiologists to what they will do in this case. For the most part our baby boy should live a normal life other than this hurdle at birth, he will need to see a card once a year to make sure the repairs are holding up but still should run and play and do what boys do. We have another appointment October 7 and will have another Echo Cardiogram and speak with the cardiologist again hopefully leading us closer the the birth plan. I will be delivering at the U of U and baby will immediately be transported to the NICU at Primary Children's hospital when he gets there he will get a line to his umbilical cord to start nutrition and a medicine to stop a valve from closing in his heart. I will not be able to feed him until after the surgery. We are very scared and anxious to see what is next as a problem solver I keep thinking well maybe we can fix this, lets do this...etc. I just hope that my beautiful daughter doesn't feel to neglected she will certainly be shuffled around from family member to family member so that I am able to get to the hospital to see our son. As soon as he is stable, eats on his own and breaths with out oxygen he can come home the average stay is about a month :*(
Click the link for more info on Coarctation of the Aorta
http://www.childrenshospital.org/az/Site520/printerfriendlypageS520P0.html

The road to a diagnosis

At our 20 week ultrasound Dr. Hutchison (My OBGYN) noticed a slight abnormality of baby's heart, although not sure he ordered another ultrasound wondering if it may have been the baby's position or just a bad picture. So another ultrasound was ordered, around 25 weeks the ultrasound tech continued to have a hard time getting a good picture of baby's heart at this point I was told that the heart looked abnormal and possibly one chamber was smaller than the rest, I was then referred to Dr. Rose (Perinatologist) at IMC in Murray. At this appointment Dr. Rose explained that there is a problem with the heart they are still unsure of what is wrong and we were told I needed to go to Primary Children's to have and echo cardiogram to get a diagnosis. The next available appointment was 2 weeks later, the 2 weeks have gone by so slow and the wonder and concern for our child has grown and grown. Tomorrow is the day and with so much anticipation I can not wait to finally have somewhat of an answer.