Sunday, October 4, 2009

The latest news

So we're 32 weeks now. Vance is measuring nearly 5 lbs.  Doing wonderfully!  Everything is looking good so far.  His breathing, weight, movement. I'm really happy with how things have been going. He's a bit less active since she doesn't have much room. He's been head down for a while and is putting tons of pressure on me how.  We're still at risk for early labor and since they have now noticed changes in my cervix they are watching it even more.  Starting with weekly exams, non-stress tests (the ones I asked for) along with his monthly ultrasounds and a follow up with the Cardiologist on this Friday.  I am pretty nervous about it.  Vu has been working a ton of overtime and won't be able to go with me.  That makes me pretty scared.  I don't want to deal with any bad news alone.  I guess even if the news is the same as before I'm going to have a hard time dealing with that.  I didn't get too distraught the first time but I think that was only because I had researched so much before hand that I knew most of what she was going to tell us anyway.  This time is different I guess.  It's the last time they are going to look at his heart before he's born, so It's the final say.  It being the end or what feels like the end of hope for a change.  Maybe I am clinging to hope but I keep telling myself maybe they were wrong about the down syndrome.  I'm going to be waiting until he is born to see for myself. I pray that is the case. Please let them be wrong so we can do what we need to for his heart.

Saturday, August 29, 2009

My moments

I hope I am not too depressing for everyone else when I write these blogs but this is my outlet.  I see too many doctors to have time to see a therapists, so this is my therapy.  I've asked over and over again for a new anti-depressant only to find each one that is prescribed for me if harmful to Vance, so I think I've given up asking.  Especially with the last one.  I read the pamphlet that came form the pharmacy only to find it can cause him to have seizures!!  So I am doing what I can to keep myself under control.  Not easy for me since I already suffered from depression before I ever got pregnant. Then throw in hormones and a poor prenatal diagnosis which all add fuel to my fire.  So I struggle but Vu is the main one suffering trying to figure out how to deal with me when I hit a bad spot.

Monday, August 24, 2009

I'm almost at the point I can't take it

Today Vance was very still.  I just met with the Dr. last week who told me to start doing kick counts last week.  The same one who I told to do the tests to prevent still birth.  One I actually thought I liked, because she acted like she got it.  I call the office today because I noticed last night and today that he wasn't as active as usual.  I'm sure it wouldn't have mattered if they told me that or not they freak me out all the time with the things they say and I would have been worried even if they hadn't said a word at all.  He wasn't acting like he usually does.  So I wait til I can start doing the counting because I know they are going to ask me if I did that.  So I count for an hour and sure enough it's below what they want.  I call and get put off for an hour.  But I count again, and again lower than they want.  The nurse calls and says she will speak to the dr.  I am expecting a relatively quick turn around since it's an important issue and I already counted for 2 hours.  No! I don't get another call until 2 hours later.  Then they say don't worry about it.  That it's too soon to worry about it. Even though the time to "worry" about it is only a week away.  Fetal movements aren't regular enough at this stage they say.  I say no he's really regular with his schedule.  As a matter of fact that is one the the first things I noticed about him.  He has a fairly set routine.  He was off his schedule this weekend, but he was still pretty much himself, VERY ACTIVE.  Not today.  I couldn't wake him up this morning and usually he is the one waking me up (or at least motivating me to get out of bed). But "OH you can go to the hospital if you really think you have to" but we don't want you coming into the office and making another dr mad because we wouldn't normally see you for this so soon".

Saturday, August 22, 2009

It's Another Day

I've been planning a lot for Vance's birth and memorial. I've met with the palliative care team at MUSC. They are the Dr's who coordinate "not doing anything" as I like to call it. They say their job is to make him comfortable and help make sure our wishes are met. It makes me cry to have to talk to them. One of them said the word die and I thought I would just hearing them say that while talking about my baby. I wrote out a birth plan a couple weeks ago and finalised what I wanted to say earlier this week. I'll post it later in case anyone is interested. I had to send it so they could make it part of my record in case we went earlier than expected. They talk to me about things I don't want to think about. At my appointment this week we were scheduling my c section and they were telling me not to wait to late because risk of still birth. Then right after that we were talking about testing the do to prevent still birth which they normally wouldn't do for me. Seems like a contradiction does it not? Again making me angry that they think it's ok just to not care anymore. I looked straight at the dr and said no I want the tests. The whole reason I am doing this is to hold my son alive at least one time.

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.