who we are

Kalix

Cantius

 

My name is Stephanie. My husband David and I had our first child Kalix on March 08, 2014. He was born at 9:16 pm weighing 4 lbs 14 oz. We had him at the foothills hospital due to the underlying issues we encountered throughout the pregnancy. 

 

I was told on my first trimester screening that he had a high nucal translucency reading, and edema in the stomach region. They told me that my odds of having a baby with trisomy 13, 18, or downs syndrome were increased. They offered me an amniocentesis, I declined  and asked to wait for the next ultrasound to decide. The second ultrasound came and the doctor saw us after and told us that everything looked good but there was a question he was having about his heart. We were scheduled to come back in a few weeks for a follow up ultrasound. At our next ultrasound the cardiologist ended up speaking with us after wards. She had told us that there were three issues she spotted which were a VSD, a suspected coarctation, and a sub aortic stenosis. She explained that she was going to follow us closely throughout my pregnancy to see how things progress. We were offered another amniocentesis and I decided to get one.

 

The results took a  while to come back, the FISH results came first which confirmed that he didn't have down syndrome, or trisomy 13, or 18. Then it took the other results a bit longer to come in and when they did they confirmed that he was missing part of chromosome 8. They couldn't tell us much about it because it is very rare, and of the people that do have it everyone varies in the things they suffer from. We were told that on this chromosome there is the GATA 4 gene which is linked largely with the heart. They told us that this is probably why they are seeing issues with his heart. We were told that the issues that the cardiologist was seeing would need surgery at some point to correct. We were assured that there are really good things that they can do with the heart, so even though he will need a surgery all should be fine. We had an ultrasound almost every week and things didn't change. We were asked to pick a date to schedule induction and told a week early is best. We decided to be induced on March 10th and on Saturday the 8th I started to get contractions. 

 

We ended up having him at 9:16 pm and he was stable. They started him on Prostaglandin which is a drug to keep a possible coarctation open. He was put in the NICU and put on an IV through his embelical cord. He wasn't being mouth fed because they don't like to feed babies that are on Prostaglandin. They took him off that medication two days after because they wanted his PDA (a hole in his heart) to close to see if there actually was a coarctation. He was then able to bottle feed a little bit here and there. They were still topping him up with fluids through the IV. Adjusting to feeding was the hardest part for him which was largely because they didn't start to feed him through the bottle until two days after. He was given a few echoes to monitor how things were changing, they were still seeing many issues with the heart but the one that would need an immediate surgery is the coarctation. They waited for the PDA to close and once it did they found that there was no coarctation. We were then transferred to the Childrens Hospital and were followed up with cardiology with another echo so they can decide a plan for going forward. They had a conference with Edmonton and discussed what to do. They met with David and I after their conference to let us know what the conclusion was.

 

They explained all the problems they saw with his heart and how they were all balancing each other out perfectly at this point. They told us that he will need a surgery at some point but he is to small for them to do anything right now. They told us that we can take him home to grow and get bigger and they will follow us once a week or once every two weeks to give him an echo and see what is going on. They told us that if they need to do any surgery right now it is so high risk he may not survive, so they want him bigger first. They told us things to look out for which include changes in breathing and changes in eating. They said that they don't want to do anything unless he starts to show symptoms. So right now we are playing a waiting game watching him closely for changes in breathing, it has been really hard worrying every second of every day. 

 

Things are going well with him right now but we are needing to see a lot of doctors and we have a lot of appointments. My husband has taken off work because he is the main driver and also doesn't want to miss any appointments. We are both missing work and feeling the crunch of bills and rent and diapers and all of life's responsibilities. We are so blessed to be getting help by the Sarah Faith Hogan Foundation, it takes a lot of the stress away and gives us one less thing to worry about. I cannot thank them enough. Although our story is just beginning

 

I will continue to update them on things because they are a great support. Thank you again.   

 

- Stephanie

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Sarah Faith Hogan

november 8, 2004 - january 22, 2006

The Sarah Faith Hogan Memorial Foundation was formed in loving memory of Sarah Faith Hogan and is dedicated to the selflessness and courage of Sarah’s grandfather and mother, Chuck and Cathy Hogan.

 

The Hogan’s immediate and extended family are a true inspiration and a testament to the power of love and the family bond.

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