Kassia's Heart

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. 

 We got there around 9:30 and they had us meet with a nurse to check her weight, height, blood pressure and temperature. All checked out perfectly and she even weighed the most she ever has. The nurse then came in and explained everything that was going to happen for her surgery, what to expect and some in's and out's of what would transpire. It was really nice to talk to the nurse as she gave me a different perspective on things then the surgeon did and I think gave me more of an idea as to what our hospital stay would look like.

 Since Kassia has to stay sickness free for the surgery to happen, I chose to carry her around on my back to help eliminate contact with the germs of the hospital. While we were there they gave us an ointment to put in her nose twice a day that has been proven to help reduce sickness. She doesn't care much for it but I'm glad for the extra measure to keep her healthy.

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.   

Changing of a feeding tube

I'm A little over a month ago, I had an incident that resulted in my feeding tube falling out. I have had lots of questions about what the dr's do when something like that happens. I thought it would be best to write a post about it and share some pictures. Some of these pictures may be a little unsettling to the stomach so if you have a weak constitution, you might want to skip this post. 

My feeding tube is called a Mic-Key low profile feeding tube, other wise know as a "button". This tube is held in by a balloon that is inflated with water after it is inserted into the abdomen/Jejunum. If the balloon pops or losses it's water, it can become dislodged from the abdomen and the hole that it goes through will start to close. This hole/stoma/tract can start to close up within about an hour of the tube being removed. 

On a Tuesday night I went to bed and hooked up my feeding tube bag of water and then went to sleep. Around 3 am I was woken up by a wet feeling that was running down my side. Come to find out I was drenched in water and bile because the feeding tube balloon and popped and fallen out while I was sleeping. I wasn't sure how long it had been out as I couldn't get it to go back in again. I quickly woke Sean up and told him that I needed to go to the hospital to have it replaced as I didn't know how long it had been out and it was the middle of the night. We decided that I would just drive to the ER and get it taken care of because I was thinking that it would only take me a couple of hours and then they would send me home. Needless to say it took a lot longer then that.

It took them about 45 minutes to get me back to be seen. Then they couldn't find the right tube and I kept having to tell them that it was a Jejunosmy tube and not a gastric tube. Here is a picture of what the hole looks like without the tube in it: 

This is what the tube that fell out looks like:

 
Since they couldn't find the right tube, they decided to place a folly catheter until they could find a proper replacement. This would help keep the hole from closing up while I waited. This is what the fully catheter looks like:

After wait and waiting they finally told me that they had to put a referral out to the surgery department to make sure that tube was placed correctly. I knew this was an overkill but at this point I didn't have much choice. A resident Surgeon came in and placed a long tube. They weren't able to find a replacement low profile tube. This one is a little different because it has the long tube and a plastic bumper on the outside of it.  So now I had this long new appendage and I instantly missed the lower profile tube.

I Was hoping that once they placed the tube I would be able to go home but they wanted to make sure it was in the right place and then they also wanted to make sure everything was good with Surgery. One bright note was that I got to see the surgeon that was on my case when I had my bowel obstruction, Dr Eifferman. He was concerned about the balloon and wanted to make sure I could tolerate having a balloon type feeding tube. It was nice to talk to him about my progress and about what has happened since the last time I saw him. He also mentioned another girl who has SMA syndrome and how she wasn't doing as well as he had hoped that she would be doing. He said that he thinks that SMAS just creates damage that can't be fixed and that unfortunately, is something that will plague some for the rest of their lives. Not the happiest thing to hear. I personally think that it just takes a lot longer then anyone has patience for to feel better. 

Anyway after he left, they cleared me to go home. I then had to contact my GI dr's office to see if they could get me a low profile tube. Long story short, she ended up ordering one through my medical supply company. Last Thursday, she placed it and now I am back to having a tube that doesn't really show through my clothing and isn't hanging off my body. 

Sweet cousins

Maia and Brenton really love each other and while we were visiting, they would occasionally hold hands and give hugs. 

Every once in a while another cousin would get stuck in the middle and they would make a Kassia sandwich.

Bean Angels

As a sensory game, I have a bucket of beans that the girls will sometimes play with. This time they got spread all over the floor and Maia and Kassia started making Bean angels out it. It was a bit of a mess to clean up but they had so much fun, making it worth it.

Passing the Winter hours

 

 The girls like to hang out in our basement and playing. Kassia is a little mother and loves to tote around the baby dolls.

 

Maia likes to swing. We have a swing hanging from the rafters and they love having the option to swing in the winter time. 

Twinkle Toes

 

On Maia's 3 year check up the doctor was concerned about the amount of toe walking that she was doing. He suggested that we get her into some physical therapy to help with the toe walking as it can cause the ligaments and muscles in the leg and ankles to develop wrong. So we have done about 6 sessions of PT and Maia loved going.

   

She had so much fun running around and doing her exercises. These are pictures of her pt. 

 

Now every time she sees the Nationwide Children's hospital butterflies she automatically says, "My Physical Therapy!" 

A long over due update

I know I have been pretty quite for the last few months and there is several reasons for that. Between traveling and learning about how my body is changing, I have not been motivated or had the concentration to blog. I do need to let you all know how I have been and I think it is fitting to post today, as it is SMAS awareness day.

This week a year ago, on the 22nd I went into surgery to bypass my superior mesenteric artery and duodenum. I went into the surgery very hopeful that I would be able regain my ability to eat and not throw it bake up. I had been counseled that the recovery would take a lot longer then the 6-8 months the surgeon had said it would, like at least a year, but I thought that I was strong enough that it wouldn't take me that long. Then 10 days later I ended up back in the operating room to fix a late post operative bleed. The more I have reflected on this, I have come to the conclusion that this second surgery set me back more then I ever gave it credit.

Fast forward a year, I still rely on tube feeds to get enough calories and hydration to survive. I have put on about 8 pounds and am stronger then I was. Because of my tube, I deal with chronic abdominal pain and that probably wont go away till the tube is removed. I also deal with quite a bit of fatigue and although there is a lot I can do, if I do too much in a day, I pay for it the next day.

My treatment plan as of right now is to get me to be able to eat and drink enough to not need the tube feeds anymore. To do this I have been seeing a physical therapist who specializes in scar tissue in the abdomen and I also spent a month at my parents house where my dad, who is a chiropractor, worked on breaking up the scar tissue as well. I think that the work that my dad did and continuing the physical therapy here in Ohio, I should be able to regain my ability to eat and eat enough. I may never be able eat like I used to but to be able to survive on my own is my goal and I can deal with the rest.

I hopefully will be updating my blog with some of the activities we did over the past couple of months so you can see more of my cute kid's faces. Thank you all again for your love, support and prayers in my behalf and for my family.

I created this video for SMAS awareness day and as reminder that even though my year was spotted with hospital visits, that's all it was: spotted. The rest of the canvas was covered with a lot of joy and good memories.

2016

2016. In some ways you couldn't get here fast enough but in other 2015 will be a year that I will never ever forget.

2016. There is a lot of hope for you to be an amazing year, between what we have planned and the fact that I'm starting to feel better, you have a really good chance of being fantastic. 

2016. I am excited to experience your ups and your downs.

2016. I here to stay. 2015 tried to get rid of me but it didn't know my strengths.

2016. I know I can get through anything you have to throw at me because I have my husband and my girls by my side. 

2016. I know we have some big things happening this year but you will not break my faith, strengths or spirit. If 2015 couldn't do it you can't either.

2016. You are a new year, I am a new me. 30 hasn't looked better. 

2016. Let's just get along and play nice. It will be better for all involved that we work as a team. 

2016. Here we go!