We've a scary past few days! Here's a recap on all that happened:
Over the weekend, I was having elevated blood pressure readings, difficulty breathing, and frequent/constant headaches. On Sunday, I checked my blood pressure prior to working a 12-hr shift and it read 133/103. During the shift, one of my friends checked my BP & it was normal. By the time I got home, it was 155/100. I knew I had an appointment the next morning, so I didn't head to the hospital at this time. At my appointment on Monday, my BP was 129/96 and there was protein in my urine. My doctor was concerned and sent me to Medical City to have a full preeclampsia workup. Preeclampsia is when a pregnant woman develops high bp and protein in the urine after the 20th week (late 2nd or 3rd trimester) of pregnancy. You can read up on it at http://www.pennmedicine.org/health_info/pregnancy/000200.htm.
At the hospital on Monday, my BPs were back to normal, but the OB hospitalist was really concerned about my brisk reflexes & headaches not relieved with Tylenol. She threatened to deliver Cason that night if my headaches didn't resolve. I started a 24-hr urine collection to check how much protein I put out in a whole day. Almost all of my BPs were good on Tuesday and my urine test came back ok, so I was sent home on modified bed rest that evening. This means I can do little things like go to the mailbox, take short car rides, etc, but nothing that requires exertion. Mostly, I hang out on the couch.
Last night, I feared that Cason was trying to come into this world early because I had the absolute worst Braxton Hicks contractions to date. This continued for about 2 hours, but thankfully my prayers were heard. If he had come last night, we wouldn't be able to have surgery for at least 2 more weeks and would probably have to keep him going with lots of breathing assistance. More complications added to his already complicated young life. We really need to keep this kiddo in place for at least 4 more weeks to give him the best chance during his open heart surgery.
My family and friends have been and are continuing to be amazing throughout all of this. My wonderful parents have prepared a bunch of our favorite meals & froze them, so that all we have to do is pop them in the oven or microwave. Brian, my bro, has been so helpful with Coyt. My dear friend, Amy, is organizing a support group to help us out where needed. I have received so many wonderful Facebook comments, emails, texts, & phone calls. Your continued prayers are the greatest gift of all. Thank you each and every one of you!!
Thursday, December 15, 2011
Friday, December 2, 2011
Whoa Baby!
I'm 32 weeks & 3 days pregnant, and boy howdy do I feel it! You wanna know why I am extremly uncomfortable this pregnancy?? Why my belly is so huge that it looks like I am ready to pop any day now?? No, there aren't multiples in here, but I do get asked that frequently. It's because my baby is BIG, BIG, BIG! According to both the books Your Pregnancy Week by Week and What to Expect When You're Expecting, it says my baby should weigh almost 4 pounds this week. Well, Cason didn't get that memo because my maternal-fetal doctor is weighing him in at 5lbs 5oz. And I'm at the stage where he will be gaining half a pound a week. Let me do the math....if I were to deliver at full term he would be over 9 pounds. Let me remind you that I am a small person! Thankfully, we are going to induce almost 2 weeks early, so he should only be around 8lbs 5oz. That's bigger that Coyt who was delivered exactly 2 weeks early and around 7lbs 9 oz. OUCH!
Not only did I visit my perinatologist (aka maternal-fetal doc) today, but also the pediatric cardiologist. And yesterday, I went to the OB. It seems that Cason's heart is progressing as expected in a fetus with HLHS, but THANKFULLY there are no other complications arising at this time. While getting my fetal echocardiogram (sono of the baby's heart) completed, there was a camera crew filming for a documentary on HLHS. I'm really excited about being able to share our story with other parents of HLHS children.
So we are about 90% sure that we will schedule for delivery of Cason on Thursday, January 12, 2012. This day would be early enough that hopefully Cason won't come on his own, but late enough that he is well developed. Also, this day would set up perfectly for Dr. Mendeloff to perform surgery at 4 days of life on Monday, January 16th. My OB, perinatologist, & pediatric cardiologist are all on board with this, but we will have to wait and see what the other docs at Medical City think. Too many people to make decisions!! Call me superstitious, but I refuse to have this little guy on Friday the 13th. I hope they don't try to push for that day:oP
Well, that's my update for now! I will try to post as soon as we have more information. Again, thank you for all your kind words and your prayers for our family!
Not only did I visit my perinatologist (aka maternal-fetal doc) today, but also the pediatric cardiologist. And yesterday, I went to the OB. It seems that Cason's heart is progressing as expected in a fetus with HLHS, but THANKFULLY there are no other complications arising at this time. While getting my fetal echocardiogram (sono of the baby's heart) completed, there was a camera crew filming for a documentary on HLHS. I'm really excited about being able to share our story with other parents of HLHS children.
So we are about 90% sure that we will schedule for delivery of Cason on Thursday, January 12, 2012. This day would be early enough that hopefully Cason won't come on his own, but late enough that he is well developed. Also, this day would set up perfectly for Dr. Mendeloff to perform surgery at 4 days of life on Monday, January 16th. My OB, perinatologist, & pediatric cardiologist are all on board with this, but we will have to wait and see what the other docs at Medical City think. Too many people to make decisions!! Call me superstitious, but I refuse to have this little guy on Friday the 13th. I hope they don't try to push for that day:oP
Well, that's my update for now! I will try to post as soon as we have more information. Again, thank you for all your kind words and your prayers for our family!
Tuesday, November 15, 2011
Time....too slow, yet not enough
JUST BREATHE comes out of my mouth on a daily basis. It seems like I have no time to do anything, but I also feel that this pregnancy is taking forever!! Sorry, I haven't written an update in awhile....life in the Howey household has been just crazy between doctor appointments, work, school, being parents of a toddler, building a house, and trying to still have a somewhat normal life. Here is a recap of everything that has taken place in the past month....
Since I last wrote, I have been to visit the surgeon once, perinatologist (maternal-fetal) once, pediatric cardiologist once, and my OB twice. Yes, I have four doctors to rotate between, and now til delivery the appointments are going to be more frequent....aaahhhh....JUST BREATHE! The update on everything is that Cason is growing perfectly....except for the heart, of course. There isn't any evidence of further deterioration which is GREAT! Another wonderful piece of information is that I don't have to have a c-section! All the doctors agreed that a scheduled normal delivery would be best for both mommy & baby. The plan is to have the delivery sometime between the 38th & 39th weeks, so that means he will be here between January 10 - 17...if he doesn't decide to come earlier. Hopefully, he will allow us to decide his arrival date!
As I mentioned above, we are building a new house. It is in the newer part of our same neighborhood...just across the train tracks (literally, not figuratively). When we first found out that Cason's diagnosis, we feared that we wouldn't be able to continue with the build because of all the expected hospital bills. Thankfully, we won't be out the 10s to 100s of thousands on medical bills as we first thought. People, our situation is why you pay so much in health insurance because it really provides a huge savings when you have a major medical issue like this. Our insurance company and Medical City Children's both have held my hand through the last month. I receive constant phone calls to check on how I am doing, to tell me what I need to do next, or to answer any questions. This week, I get to tour the Neonatal ICU (aka NICU) and the pediatric cardiac ICU, plus I will get all the paperwork out of the way, meet with the neonatologist (special baby doctor), and maybe even the OB hospitalist.
As for my older little price, Coyt, he is doing very well! He amazes me with his adorable little mind each and every day. He sings his ABCs, counts his toys or other things, makes up his own stories while looking through his books, etc. Sometimes, he will bust out with a word or phrase that I have no clue how he learned that. Saying that, mommy & daddy have to make sure we keep our language clean as well....uh oh! Also, he loves to tell Cason "Hi!" and kisses his little brother through mommy's belly button. We are very blessed to have this little guy. Here's his latest school picture:
Again, thank you for all the prayers and sweet comments! We appreciate each and every one.
Since I last wrote, I have been to visit the surgeon once, perinatologist (maternal-fetal) once, pediatric cardiologist once, and my OB twice. Yes, I have four doctors to rotate between, and now til delivery the appointments are going to be more frequent....aaahhhh....JUST BREATHE! The update on everything is that Cason is growing perfectly....except for the heart, of course. There isn't any evidence of further deterioration which is GREAT! Another wonderful piece of information is that I don't have to have a c-section! All the doctors agreed that a scheduled normal delivery would be best for both mommy & baby. The plan is to have the delivery sometime between the 38th & 39th weeks, so that means he will be here between January 10 - 17...if he doesn't decide to come earlier. Hopefully, he will allow us to decide his arrival date!
Latest profile pic of Cason
As for my older little price, Coyt, he is doing very well! He amazes me with his adorable little mind each and every day. He sings his ABCs, counts his toys or other things, makes up his own stories while looking through his books, etc. Sometimes, he will bust out with a word or phrase that I have no clue how he learned that. Saying that, mommy & daddy have to make sure we keep our language clean as well....uh oh! Also, he loves to tell Cason "Hi!" and kisses his little brother through mommy's belly button. We are very blessed to have this little guy. Here's his latest school picture:
Again, thank you for all the prayers and sweet comments! We appreciate each and every one.
Monday, October 10, 2011
Some of our prayers have been answered
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.
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.
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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