Wednesday, July 22, 2009

Helping The Bereaved

The list below has been compiled from the hearts of the bereaved parents of Now I Lay Me Down to Sleep. Here are some thoughts and ideas of what to say and/or do for a grieving parent and family...

Monday, July 20, 2009

Today's appointment

So it was uneventful..which SHOULD make me happy but it doesn't. I just feel like no one knows what to do or say around me anymore. I just want to shout "TREAT ME LIKE EVERYONE ELSE!!!" YES I know what is happening. Yes it makes me sad, but damn it I have 4 more months is this and I don't want to be miserable all the time. I want some normalcy. There is still a baby in there. I am still a pregnant woman. Do you know that I am 5 months pregnant and the "FN" doctors haven't measured my belly once??? It's like everyone is so caught up on what's wrong that they can't see anything else. I have another ultrasound and visit in two weeks. I hope I get some better pictures. It really irritates me that they ALL KNOW and have known from nearly the beginning that this baby might not live and they send me home with the shittyist pictures and the crappyist ultrasounds I've ever had. HELLO PEOPLE!! This is one of my few times seeing my baby for the rest of his life...can you give me a little more or AT LEAST the same consideration as the next woman who you sent home with 20 awesome pics??? She's gonna get to see that face for the next 40 or so years!! Yes I'm little frustrated. I guess the medical field wants to ignore what they can't fix. But I'm here and I need this. I am perfectly "normal" and I am not going away, what about me? I guess mother's mental health is not a reason for an ultrasound that focuses on something other than defects.

Tuesday, July 14, 2009

More confirmation

So our Cardiologist emailed on Friday evening and said she wanted to consult with more senior fetal specialists about his condition and just make sure she told us the right thing. She emailed again yesterday that they all agree on his condition and treatment. Which doesn't change much for us I guess. I'm just doing my best to get though each day knowing what's coming. I say lots of prayers for him and get excited each time he moves or kicks like he is right now. He's a strong little boy! He has me so sore sometimes from all that kicking and wiggling, but I don't mind at all. It keeps me connected to him. All the time we have together is precious. I've told the girls. I am not sure they comprehend death quite yet. But they are reaching out to touch my belly a lot more and asking questions about him. Gillian has started to make more of an effort with Vu and that sure goes a long way to reduce my stress. Next Dr appointment is monday (20 weeks-5months for those that don't know) We are half way through now. Although we aren't going 20 more weeks, maybe 19 if I have my way 18 if the dr does. Anyway more news next week.

Sunday, July 12, 2009

Cardiologist Visit

Vu and I met with the Pediatric Cardiologist at MUSC on Friday. We had an echo cardiogram done on Vance's heart to determine what exactly was wrong with his heart. She told us he has an Unbalanced Atrioventricular Septal defect. Instead of the normal 4 chambers in his heart Vance has three, one of which is very small, so in affect he is working of of two good chambers. The most serious problem is the small chamber. The left ventricle that is underdeveloped is the most important chamber in the heart. This is the one that pumps oxygenated blood out to the body. If left the way it is his heart would not be strong enough to keep him alive. In order to correct this, Vance would need three open heart surgeries. One within the first week of life called the Norwood procedure. which shunts blood from his lungs to the artery going to the rest of his body. His heart will still be working very hard so at three-6 months he would have to have another surgery to drain blood directly from his upper body to his lungs and reliever some of the work from the little left ventricle. The third surgery at 1-3 years drains blood directly to the lungs from his lower body, so the function of his heart at that point would only be to pump blood out and his right ventricle would take over all the work. Each on of these surgeries is complicated but the entire series is even more complicated by his down syndrome. This is defect that only affects 4 out if every 10,000 births and is considered one of the worst of the worst heart defects. Out of the babies with defect less than 7% have DS. Typically in 'normal' babies the first surgery in the most risky, if they survive after 1 month nearly all survive the next two. This is not the case however with DS babies. The second surgery is just as risky as the first. Because of the risks and the developmental delays that Vance would face from the combination of but the DS and surgeries, Vu and I have decided not to do the surgeries, but to allow Vance to spend as much time with us and the family as he possibly has. Nature will take it's course and just as unexpectedly as he showed up in our lives, he will leave the same way. I've accepted that I can not control the outcome of this situation and have to have faith in God to know why this is happening to us the way it is. I'm sad for my boy, and will miss him dearly, but out of these very difficult choices, we feel that this is what will be best for Vance. It will be very hard to say good bye but we have him now and will have to enjoy the time we have left.

Wednesday, July 8, 2009

Welcome to Vance's Spot

This website is to introduce you to our baby boy, Vance, and keep everyone informed about his health. Vance Ryder Doan is his full name. For those of you who don't know, Vu rides motorcycles. When we first found out I was pregnant, Vu would say his son would be a rider for life, from the womb to the grave. So he became Ryder. Following the Doan family tradition of "V" names we chose Vance as his first name, which also is a nod to the "Vance & Hines" tail pipes on the Harley . We both wanted a son and never had a doubt that our baby was a boy.