While there is still no miraculous recovery for little Cason, some of our prayers have been heard. Since congenital heart disease is such a special circumstance, I have a RN Case Coordinator hired out by my insurance to assist me with the process. She says I can see the doctors that I need to see at Medical City Children's and it won't be $100,000 out of our pocket as we were fearing. This means the doctor that has an absolute stellar reputation and 95% success rate can be Cason's surgeon....YEA!!!!! Also, this means I am free to deliver at Medical City therefore no separation of mommy & baby (except he will be in the NICU). Now, I can schedule all the necessary appointments with my 4 doctors (OB, perinatologist, pediatric cardiologist, & pediatric cardio-thoracic surgeon). All of these doctors have to be coordinated to be in attendance (or very nearby) during my c-section. Cason will probably join our world around January 10th because they want to take him at 38 weeks if he is developing properly. Whew...what a load off of my shoulders to finally have some answers.
As for everyone else, we are exhausted. We have had so many questions and scenarios running through our minds which has left little room for anything else. Life goes on as usual, so I had to work on Friday & Sunday which left Sean to do his work plus care for Coyt. My schoolwork was shoved to the side last week, but now I have to work double time to catch up. Thankfully, I don't have to work again until Friday. We have noticed a change in Coyt's attitude (acting out mostly), but I feel that may be him sensing our emotions. Hopefully with the good news today, we will send some positive vibes to him & have our sweet little boy back. I have gone through the heavy crying stages, but being prego it will still pop up every once in awhile. Also, I have definitely gone through my anger stage. I opted our of blogging while angry because I didn't want to say anything wrong or offend anyone with my irrational thoughts. In no way, do I ever wish this situation on any other family or any other child. Luckily, Cason's family is well equipped between 2 RNs (mommy & grandma), 2 grandparents that have dealt with a sick child, and a paramedic Uncle. God chose us for a reason and we are ready to weather the storm until the sunshine appears.
While I am still sad about the circumstances, I have decided to focus my emotions into preparing for Cason's arrival. A lot goes into having a special needs child!!! First item on the agenda is figuring out what to do with him when his mommy & daddy are at work. His first month or so of life will most likely be in a hospital. Then, he won't be able to be in a daycare type setting for at least the first year...maybe longer. Nor can he drug around from house to house as that will not be beneficial to his recovery. Unfortunately, I can't take off of work because I provide the medical insurance coverage. Yes, my hubby sells insurance, but not the type of benefits we need for all of this. Since I work three 12-hr shift each week, we have to find coverage those days. One of those 3 days will be a weekend, so Sean can handle that. We have some options for the other 2 days a week, but are waiting to hear if it will workout so we can finalize things. Next thing is banking cord blood & stem cells. I know there is a big controversy on these things, but I don't want to be regretting not doing so when Cason really needs it. If anyone knows anything about it or has any suggestions, please let us know.
Thank you all for your prayers and kind thoughts! Please continue to say prayers for Cason as I don't want him to suffer. Also, please say "thanks" to God for answering some of our prayers. Sorry, I haven't answered phone calls or responded to messages, but I have been so overwhelmed with trying to wrap my mind around everything that has happened over the past few days. Over the next few days, I will try to respond to some of the personal messages, but in case I don't get back to you...."THANK YOU!!!" We are very lucky to have such wonderful, amazing, caring family & friends.
Monday, October 10, 2011
Thursday, October 6, 2011
The Big Blow
Obviously, I can't sleep. Too much information was provided to me yesterday, and I am having a hard time processing it all. It's hard to think clearly or even think at all. I want to be in some sort of pharmacological induced comma right now, so that I don't have to face reality. BUT being pregnant, a nurse, and a mommy, that is out of the question. Instead, I have turned to what many people I know and many that I don't know do when they are in a crisis or just need to get something off their chest....I am blogging!
Yesterday, I learned that this precious baby boy, Cason Sean Howey, that loves to kick his mommy to let her know he's there is sick. Well, he's not really sick right now, but as soon as he leaves the comfort of my body (his life support ) he will be a very sick child. At my Level II Sonogram (more advance than the normal sonos), my maternal-fetal doctor didn't feel comfortable with the images of my son's heart. She sent me from Plano Presbyterian Hospital over to a Pediatric Cardiologist at Medical City Dallas to have a Fetal Echocardiogram (even more advanced sonogram) of his heart. Sean wasn't at the first appointment, but he was holding my hand during this second one. Afterwards, the doctor drew us pictures of the normal adult heart, the normal heart of an unborn baby, and our son's heart. It wasn't pretty. He has Hypoplastic Left Heart Syndrome (HLHS). This means the left side of his heart which pumps the blood to the rest of his body isn't developed properly.
I am lucky....I am lucky because most mothers don't know about this until their newborns are turning blue in their arms. My cousin didn't make it in this world because he was born with this. The reason I even know Cason has this problem is because of my brother, Travis. Travis had a problem called Noonan's Syndrome with a heart defect termed Tetralogy of Fallot. At the age of 5, he never awoke following his heart surgery. Noonan's Syndrome is genetic therefore the doctors prefer to take a better look at my babies that most mothers get. Many mothers of babies born with HLHS don't know until hours to days after their child is brought into this world. Yes, I am blessed with this foresight. I do want to stress that there is no known cause for HHLS. It is not genetic, nor is it something I ate, drank, etc.
What does this diagnosis mean to our family? I have to have a scheduled delivery aka C-section because the trauma of a normal delivery may be too much for Cason. On approximately day 3 of his life, he will undergo open heart surgery to place a tube in his heart to help blood flow to the rest of the body. Around 6 to 9 months of age, he will undergo another open heart surgery to modify another portion of his heart. Then around 3 years, Cason will receive a type of bypass surgery which will hopefully fix it all. He will never be able to play sports, but will hopefully appear to be a normal child with a cool scar on his chest. Of course not everything is as simple as I have explained. At any stage during all of this, Cason's poor little body may not be able to handle the stress and God may want him by His side.
Today, I'll be trying to figure out insurance, doctors, hospitals, etc. According to my insurance, they will only pay for me to have a baby at one of our hospitals (Methodist). Originially, I would deliver at Richardson Regional Hospital (aka Methodist Richardson), but they aren't equipped to provide the level of care needed. Next choice is to deliver at my hospital, Methodist Dallas Medical Center, but then Cason will be stripped away from me and be Careflighted over to Medical City Children's in Dallas. I would not be discharged from my hospital before he heads to surgery. So now, I have to beg my insurance to let me deliver at Medical City Dallas. We'll see what they say.
What do I need from everyone else?
1.) Prayers, prayers, and more prayers. We need constant prayers throughout the whole process.
2.) Understanding because sometimes I may not want to talk about it or may not want or able to be social. Please, please don't take this as a "let's not invite the Howeys over or out" because we need our friends & support system, but we may not always be up to being around.
3.) Positivity is a must! If you're a negative person, then I don't want you around us. This includes family as well. Sorry to be so harsh, but we need to have a positive attitude to get through all the hard times. Science has improved so much, and we are hopeful that it will help Cason. Our doctors are the ones that can give us the worse case scenarios, so we don't want to hear it from anyone else.
Now as for me, how am I feeling?? Lost, helpless, angry, sad, drained, etc. All the emotions you would expect and will probably hear about if I continue posting blogs. I have teared up so many times just writing this blog. The one thing I want to leave you with is this....every mommy & daddy needs to love on their little ones as much as they possibly can because you never know what tomorrow brings!
Yesterday, I learned that this precious baby boy, Cason Sean Howey, that loves to kick his mommy to let her know he's there is sick. Well, he's not really sick right now, but as soon as he leaves the comfort of my body (his life support ) he will be a very sick child. At my Level II Sonogram (more advance than the normal sonos), my maternal-fetal doctor didn't feel comfortable with the images of my son's heart. She sent me from Plano Presbyterian Hospital over to a Pediatric Cardiologist at Medical City Dallas to have a Fetal Echocardiogram (even more advanced sonogram) of his heart. Sean wasn't at the first appointment, but he was holding my hand during this second one. Afterwards, the doctor drew us pictures of the normal adult heart, the normal heart of an unborn baby, and our son's heart. It wasn't pretty. He has Hypoplastic Left Heart Syndrome (HLHS). This means the left side of his heart which pumps the blood to the rest of his body isn't developed properly.
I am lucky....I am lucky because most mothers don't know about this until their newborns are turning blue in their arms. My cousin didn't make it in this world because he was born with this. The reason I even know Cason has this problem is because of my brother, Travis. Travis had a problem called Noonan's Syndrome with a heart defect termed Tetralogy of Fallot. At the age of 5, he never awoke following his heart surgery. Noonan's Syndrome is genetic therefore the doctors prefer to take a better look at my babies that most mothers get. Many mothers of babies born with HLHS don't know until hours to days after their child is brought into this world. Yes, I am blessed with this foresight. I do want to stress that there is no known cause for HHLS. It is not genetic, nor is it something I ate, drank, etc.
What does this diagnosis mean to our family? I have to have a scheduled delivery aka C-section because the trauma of a normal delivery may be too much for Cason. On approximately day 3 of his life, he will undergo open heart surgery to place a tube in his heart to help blood flow to the rest of the body. Around 6 to 9 months of age, he will undergo another open heart surgery to modify another portion of his heart. Then around 3 years, Cason will receive a type of bypass surgery which will hopefully fix it all. He will never be able to play sports, but will hopefully appear to be a normal child with a cool scar on his chest. Of course not everything is as simple as I have explained. At any stage during all of this, Cason's poor little body may not be able to handle the stress and God may want him by His side.
Today, I'll be trying to figure out insurance, doctors, hospitals, etc. According to my insurance, they will only pay for me to have a baby at one of our hospitals (Methodist). Originially, I would deliver at Richardson Regional Hospital (aka Methodist Richardson), but they aren't equipped to provide the level of care needed. Next choice is to deliver at my hospital, Methodist Dallas Medical Center, but then Cason will be stripped away from me and be Careflighted over to Medical City Children's in Dallas. I would not be discharged from my hospital before he heads to surgery. So now, I have to beg my insurance to let me deliver at Medical City Dallas. We'll see what they say.
What do I need from everyone else?
1.) Prayers, prayers, and more prayers. We need constant prayers throughout the whole process.
2.) Understanding because sometimes I may not want to talk about it or may not want or able to be social. Please, please don't take this as a "let's not invite the Howeys over or out" because we need our friends & support system, but we may not always be up to being around.
3.) Positivity is a must! If you're a negative person, then I don't want you around us. This includes family as well. Sorry to be so harsh, but we need to have a positive attitude to get through all the hard times. Science has improved so much, and we are hopeful that it will help Cason. Our doctors are the ones that can give us the worse case scenarios, so we don't want to hear it from anyone else.
Now as for me, how am I feeling?? Lost, helpless, angry, sad, drained, etc. All the emotions you would expect and will probably hear about if I continue posting blogs. I have teared up so many times just writing this blog. The one thing I want to leave you with is this....every mommy & daddy needs to love on their little ones as much as they possibly can because you never know what tomorrow brings!
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