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!
I went to bed with you on my mind and woke up still praying for you.
ReplyDeleteI will keep you in my prayers for as long as you need them.
Georgette
After reading your Facebook post last night , I got down on my knees and said a prayer for you and Cason. Like you said it was nothing you did to have caused this and god has a plan for everyone. Things happen for a reason and I know Travis, Grandma, Nell, and Grandpa are watching over you and Cason. If Cason is anything like the Chaddick family, He will be a fighter. I know this has to be hard on you and your family but the strength you get from love and support hopefully can help. I do love you very much and I will pray for you, Cason, and the Family. I will always be here for you.
ReplyDeleteLove, Melinda
We are praying for you guys Kim. You are on my mind and I will continue to send positive vibes your way. Have you reached out to any support groups that are or have gone through the same thing? My friends son had surgery following is birth, an issue with his lung, and she found a support group at the hospital it was being done at ( Philly children's hospital) and she found comfort in those people. I know you are still processing all this and coming to terms with it all but just something to think about. You have our prayers and support.
ReplyDeleteLove you all,
The White family in NC :)