Abbie's History

This post is for those who do not know about Abbie's condition or those who want a refresher. For those who have kept up with Abbie's progress, you already know most of this stuff.

Before Abbie’s birth, we found out (in October 2008) about the heart defect that she would be born with. It is called an Atrio-Ventricular Canal or AV Septal Defect, meaning that there is a hole between the atria (upper chambers) as well as between the ventricles. The hole between the atria is larger than the lower hole, but they both allow for oxygenated blood (from lungs) to mix with non-oxygenated blood (from the body), and the two valves (mitral and tricuspid) were basically meshed into one valve.

Happy Birthday Abbie!

When Abbie was born on February 20th, 2009 at 4:16 a.m., she weighed 8 lbs. 7 oz. and was 20” long. She was breathing room air immediately, and her oxygen saturation levels, measured in her hand and foot, were in the high 80s to low 90s, very good considering the AV Canal. Abbie was sent to the Primary Children’s NICU later that day because doctors found through echo-cardiograms that there were a couple of other problems with the heart.

After appearing to progress and get feeling better for several days, Abbie’s health took a turn for the worse on Sunday, March 1st. She continued to breathe very rapidly and build up too much fluid in her lungs.

After some decision-making processes by teams of doctors and nurses, they agreed that Abbie needed heart surgery sooner rather than later. Friday, March 6 was the day, and it was a miraculous success. We most definitely felt the prayers and thoughts of all of our friends and family. In speaking with the Dr. Hawkins, the surgeon, we have found out more about the condition of her heart, and realized how much of a miracle this really is. Besides the Atrio-Ventricular Canal that they needed to fix, there were also some veins going into the wrong chambers of the heart, and an extra piece of tissue that needed to be removed in the Aorta. But in just a few hours, the surgeons were able to “fix everything” in one surgery, and it worked extremely well right after they put the heart back in and started it back up.

Abbie after open heart surgery

Abbie’s own heart rythym didn’t come back after her first surgery, so on March 19th, Dr. Hawkins inserted a pacemaker into Abbie’s abdomen, with leads up to her heart. This type of pacemaker is quite sophisticated, and it has a lead up to the top chamber and the bottom chamber, only giving electrical pulses when she needs them. We found out recently that her heart is requiring one of the pulses about 95% of the time, and about 5% of the time is requiring both pulses. There is nothing wrong with this – the pacemaker is just doing its job, but it’s probably a good thing they decided to put it in.

On the 2nd of April 2009, Abbie had another surgery, called the Ladd’s procedure, which was to prevent rotation and cutting off of intestine functions. Part of Heterotaxy Syndrome, which is what she has been diagnosed with, is the possibility that the baby has a condition called “malrotation”, which translates into Spanish as “bad rotation”, of the intestinal tract. The surgeons basically just have to move part of the intestine to where it should be, to avoid the aforementioned twisting and cutting off of the intestines. They also took out her appendix because of its odd location, so she’ll never have appendicitis.

Abbie's surgery scars

On the 13th of April 2009, the day after Easter Sunday, we got to bring Abbie home (after 7 ½ weeks in the hospital). She was on 5 medications and an NJ feeding tube, but we have loved having her home. We visit at least one doctor or care-person every week, but it has still been a joy to figure this real “parenting” thing out.

Our happy little girl