When I was about 18-20 weeks pregnant, we went into have our anatomy ultrasound done with Kassia, and at that time we found out that something wasn't right with the development of her heart. We had to go back couple months later for a fetal echocardiogram to determine the severity of the defect and what her delivery might look like. On May 27, 2014 we were told that she has an Atrioventricular Septal Defect (avds or Ostium Primum). Her specific heart defect doesn't effect the ventricle much but it does effect her her left ventricle valve. She also has a small hole higher up between the atrial chambers.
Ultrasounds from February 2014
Fetal Echocardiogram May 2014
Right after she was born they had to spend a little extra time clearing her airways and get her to breathe.
They had me hold her for 2 hours skin to skin (without feeding her) to help regulate her breathing and her heart beat.
She had to wear a heart rate monitor for the first day but really all in all her birth couldn't have gone any better and the problems she had, any newborn could have had.
They did an echocardiogram while she was in the hospital and then referred us to see a cardiologist in a few weeks.
Kassia at her first cardiologist appointment. They had to use the smallest blood pressure cuff I've ever seen and Kassia hated it. They also did an EKG which she tolerated a lot better.
After this appointment the Dr said he wasn't to concerned about her heart and to come back in 3 months for a sedated echocardiogram. He also said that we would just keep an eye on it for the next year or so and go from there.
Well, life got really crazy for us around that time and that is when we ended up in Utah for 6 months. Needless to say but Kassia's echocardiogram was postponed till we got back from Utah.
At that time they told us that they she was doing really well and we would wait a year, do another sedated echocardiogram and then probably recommend her for surgery.
Fast forward a year, plus, and we get to July of this year. We went in the beginning of July and they gave her some medicine to make her sleepy so they could do the echocardiogram. Instead of making her sleep, it made her more like a drunk 2 year old. I wish I would have been able to take a video of her because she was pretty funny. She would just point at things and start laughing. Since we couldn't get her to sleep and they needed really clear images, they cancelled the echocardiogram and scheduled one to be done under anesthesia.
So we got up bright and early on July 22nd, and headed over to Nationwide children's hospital for her appointment. She was pretty good even though she wasn't allowed to eat or drink anything before the appointment.
She loved the yellow pajamas and she even got to pick out the flavor of her face mask. They rubbed a cherry smelling cream on the inside of the mask and since she played with the mask it got all over her hands.
She tolerated the anesthesia really well but was pretty grumpy when she woke up. 
She just wanted to be snuggled.
She got to pick out a little toy for being good and that made her day, well along with being able to eat again.
After her echocardiogram, we went to go see her Cardiologist, Dr Wheller. He then told us that it was time for her to be presented to the surgical team for surgery. Her heart hadn't changed much but since she was having troubles gaining weight, it was time to get the holes fixed. He said that she would be assigned a surgeon later on the next week.
The next week received a call from Dr Wheller letting us know that surgery was indicated and she had been assigned a Surgeon. We got a call from the surgeon's office a few days later scheduling her surgery.
The beginning of this month, we met with her surgeon to go over all the details of the surgery. Because of the type of holes that she has, they are not able to repair them through a catheter, they will have to go in and do open heart surgery.
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Her AVSD follows more of the pattern of a partial or incomplete AVSD and it effects her Mitral Valve but not her Tricuspid. This means the hole is in such a place that they will have to use a patch from the pericardium (the sack in which the heart sits in) to help close the hole. The hole she has father up in her atrium will be able to be closed with just a few stitches. Also the valve repair work will also only take a few stitches to correct.
She will be put on a heart and lung bypass machine and her heart will be stopped while they work on it. the surgeon said that the surgery will take about 4 to 5 hours to complete. They said with her type of heart condition they should be able to do the surgery without needing a blood transfusion and that the risk of complications is very low. Once the surgery is over, she will spend about a day in the ICU. Once all her tubes are removed and she is stable, they will then move her to the regular floor. If all goes well, she should be in the hospital for 3-5 days.
Kassia's heart is functioning really well, all things considering, and most people wouldn't even know she has a congenital heart defect by just looking at her. She is very active and other then her weight is developing right on tract. On the inside, however, she is starting to show heart enlargement and the heart is starting to develop slightly lopsided. We could wait a few years before having her surgery but by doing the surgery now, any heart damage that has been done is reversible and since she is little her recovery should be a lot faster.
On Friday Kassia had to have her Pre Admission Testing done to make sure she is ready for surgery.
After we were done with the nurse, we were sent down to radiology for a chest x-ray. They had me wear a lead vest and hold her while she sat on a chair to get the x-ray done. She sat so nice and still while they quickly took the x-rays. Afterwards, the x-ray tech let her pick out a couple stickers, which totally made her day.
We then headed over to have her blood drawn. I was nervous about this for her as I didn't know how she would react to it. The last time she had had her blood drawn she had been sedated for her echocardiogram. She was the perfect patient! She sat on my lap and only whimpered a little when they poked her with the needle but then she was distracted by the blood coming out of her arm. It was like she was fascinated by what was going on. The phlebotomist was amazed at how well she was doing and couldn't believe she sat so well. Kassia got to pick out a band aid (a despicable me one) and then asked if she could have the containers the blood was in. That gave us a good chuckle. I was relieved that went as well as it did.
On our way home I called Sean to let him know we were coming home and Maia really wanted to talk to Kassia. I asked her why and she said that she wanted to make sure Kassia was alright because she has surgery. I assured Maia that she hadn't had surgery yet and that we were coming home. Maia then said "oh good! she is good!" Then promptly gave the phone back to Sean. Maia has been really sweet about all of this and it does my heart good to see how much she loves and cares about her sister.
Kassia is scheduled to have open heart surgery on this Wednesday, the 28th. We have to be at the hospital around 6:30 and her surgery should start around 8. As of right now she is the only one scheduled for surgery that day, so the surgeon's focus will all be on her.
Both Sean's and my parents are flying in on Monday to be here for the surgery and to help out with Maia. It will be so nice to have them all here and to have the support while going through this time. We have been very blessed with all the love and support that we have received over the past few years. We have chosen not to share about Kassia's heart until now for a few reason that I wont go into but I want all who read this to know how much I appreciate your love and support. I am hoping to keep everyone updated as to how the surgery and recovery goes through Facebook and daily blogging. Also thank you in advance for your thoughts and prayers for Kassia.
