Introduction



We have now known that our little man, Hunter will be born with a very severe and rare heart defect known as Tetralogy of Fallot for about 2 weeks. Upon finding this information out, I did like any person would do, and started searching the internet for as much knowledge, experiences, and recommendations as I possibly could get on this condition.
While I was able to find a lot of information regarding the condition itself, I was surprised at the lack of support I found for parents dealing with this. I found I had a million questions that I couldn’t find answers to that the Doctors didn’t have answers to and they are revolved around one large question.
What does being a parent to a child of Tetralogy of Fallot look like? What can we expect in the next year, 5 years, and beyond?
The answer to this was surprisingly lacking. There was all the normal medical advice, but where were the details from actual parents about their concerns or experiences. Where are the actual accounts detailing to me what it was like for them during these time periods? There were a few here or there, but most of them were not very detailed. Most only hit the highlights and didn’t give me a good play by play about what life for my husband and myself might be like. Due to that, hopefully one day someone can stumble upon this and it will be helpful to them. Now I know every situation is different, and so please prior to taking anything I say in any of my posts as “medical advice” please, please, please speak with your Doctor and get their opinion for your situation. Please just consider this blog as a way to know you are not alone, and to get an idea of what possibly might be to come.
Please feel free to follow along on our little guys journey, feel free to reach out for support, and please check back often for updates!

Comments

  1. AnonymousDecember 3, 2022 at 1:20 AM

    With 3D printing, dentists can get monetary savings|lower your expenses} by creating the merchandise in-house. To start to know the influence 3D printing might have on dentistry, it’s important to know what it is and the way it} works. 3D printing is a process that turns a digital picture into a bodily object. The dental trade is all the time looking out for expertise that will elevate the patient’s expertise whereas serving to the bottom line. Visiting the dentist could cause precision machining some people to expertise anxiousness, even if the go to is painless. Technology advancements have been quickly altering in the last few|the earlier few|the earlier couple of} years.

    ReplyDelete

Post a Comment

Popular posts from this blog

Hunters Journey Update 4/3/2020 and Covid Update

Image
So with all of this Covid craziness going on, I am sure some people are wondering how things are going. I am first going to give an update as to how our little guy is doing, then go into some of the challenges that we are starting to face with the disease hitting and potentially giving birth during a pandemic. Hunter had a good week! On Monday, March 30 th , 2020 we received a phone call letting us know that the full amnio results finally came in. I have been waiting for this call for over a week! The week prior, Children’s Hospital scheduled us to meet with a genetics specialist at their facility. Due to this I knew the results had most likely came in and were not good, potentially saying that he had DiGeorge Syndrome. On Monday when I finally received the call, everything was normal! They could not find any reason for his Tetralogy, but are very hopeful now that once he overcomes the Tetralogy he will thrive! Children’s preemptively assumed that the test would come back as possib...
Read more

Introduction

We have now known that our little man, Hunter will be born with a very severe and rare heart defect known as Tetralogy of Fallot for about 2 weeks. Upon finding this information out, I did like any person would do, and started searching the internet for as much knowledge, experiences, and recommendations as I possibly could get on this condition. While I was able to find a lot of information regarding the condition itself, I was surprised at the lack of support I found for parents dealing with this. I found I had a million questions that I couldn’t find answers to that the Doctors didn’t have answers to and they are revolved around one large question. What does being a parent to a child of Tetralogy of Fallot look like? What can we expect in the next year, 5 years, and beyond? The answer to this was surprisingly lacking. There was all the normal medical advice, but where were the details from actual parents about their concerns or experiences. Where are the actual accounts detailing...
Read more

How Hunters Journey Started

Image
Hunters’ journey starts the same as most little kids. My husband and I had decided to start trying to add to our family in June 2019. We were very blessed and only had to wait 4 months until we were gifted our little Hunter. On October 21 st we found out we were expecting our first child and of course were elated. We will never know when Hunters condition came to start to develop. Was it predetermined in his genetics? Was it something that happened in the following days? We will never know, and unfortunately the doctors also do not have an answer. By most accounts, Hunter had a fairly normal start. He was conceived on our anniversary trip in Mexico and we found out about him a short three weeks later. Right after we found out about him, as a family we did endure an immense amount of stress, losing my husband mother, but our Doctors are fairly certain the stress sustained through these early days did not contribute to Hunters condition. Any hints that this would not continue as ...
Read more