preparing for the next step

His PA bands are getting too small now.  His cath looked good, but D. Bradley wants to make sure there are no surprises like there were during the last surgery, so he and  dr Zyblewski reviewed the cath angogram results again.  This time they suspect that Vance's coronary arteries may not follow the normal path.  They think it's possible the arteries run through the heart wall not on the outside as usual.  So we have to have a CT scan before Dr. Bradley will consider surgery.  The Dr. that does the scans is out of town so we won't be able to get to it for another week.

the surgery

It seemed like forever while we waited for the surgery to be over. They give you a pager to text you with updates and we were glued to it, but I've since found that the pager is just a feel good thing.  I'm not sure I'll even want one next time.  They just fluff you up and tell you the real stuff later, at least that was our experience.  I guess maybe for the first time I was being treated like a normal patient's parent and I didn't know how to take it. Just give it to me straight. I've been told all this time that my boy has a death sentence hanging over him, so there isn't much you could say that I haven't heard.  But don't sugar coat it then dump it on me later.  That's what they did though.  See, my boy's heart stopped during surgery, if the rumors are correct, three times to the point where they had to do CPR. but no mention of complications on any of those texts. My jaw dropped and my eye wanted to wheal up but what was the point. He was OK now and doing fine. You know I wonder how much worse I would have been if they had said everything was fine but then come to tell me my boy had passed away?   Scary but he was fine.  My mom's reaction was overly dramatic and upset Vu and I even more.  I had to be real short to get her to stop and even then we had to get away from any negativity.  Our boy was good.  That's all we could think about.

Old stuff to catch you up on

I am really bad at story telling and I guess my blog will be the same way.  All the important points are hit, but not necessarily in the correct order. Since I stopped blogging for a while to focus on Vance, I have to go back and fill in the gaps, but I am trying to stay on top of things more this time so there are current events mixed in. Sorry but maybe it will make for more interesting reading. Soooo 2 weeks after Dr. Zyblewski (our Cardiologist) said Vance would be ok with surgery we got the call surgery in 4 days! OMg, my head was just buzzing. How do I plan for major surgery of my child in 4 days. How do I plan for my two other children and what do I tell them? Well, like everything else I procrastinate!  I did call my mom who said she'd be down asap and help me with the girls not only watching them but trying to keep their mind off of it too. So that was a relief. As far as everything else goes I was just in a daze.  I did as much around the house as I could manage, while keeping appointments at the same time. We had a long day the day before at the hospital in "same day" observation. After coming home and having dinner, my mom and her friend Michelle arrived and I spent the rest of the night til 1 am (surgery check-in 5:45am) figuring out what to pack and what to leave. The girls have school the next day but Gillian didn't want us to leave without her seeing and kissing Vance good bye.  She does love that boy so now! She got up at 4 and by the time we were leaving she was so wiped out. Mom said she was sure she was exhausted in school that day since she fell asleep in the car on the way to the bus stop a block away!

Heart Catheter Tomorrow (5/26/2010)

Anxiety is going to take over me tonight.  Vance had a normal cardio appointment scheduled for today.  Since I was downtown I planned on seeing a few other parents who were there;  A couple who just had a new HLHS baby boy yesterday and another whose baby girl has had 5 surgeries and has been struggling since Vance was in the hospital with her back in March.  We were doing the routine checks: height, weight, BP and O2 saturations.  His O2 was down. But still not out of the range they said was normal, but still 10% less than the last few times. I didn't think too much of it. After a while you start to tune out stuff like that unless it's really major.  We did his ECHO which to me looked better than the last time, less fluid.  So I figured we were in for good news. Set up the cath in a few weeks and then on to the Glen in a few months.  Well sometimes you get what you ask for but it's not exactly what you expected.  They said he is out growing his bands, which were always mean to be a temporary fix. But I could tell it wasn't something they were really wanting to happen so soon. I had felt all this time that the cath was just a means to an end, just a way to get to the next step, but for some reason I can't get over the way it's just so final.  Either they say they can do it or they say the can't.  Basically if he will live or die....so hard.

Like the energizer bunny....this boy keeps going and going and going

So when Vance turned two months old I figured it was time to stop treating everyday like his last.  We had to stop by passing things he needed like immunizations, well baby visits, etc. Just after his 2 month check up he had a high fever 103. I did what I would normally do, I called the pediatrician's office.  When they said it could be up to two hours before I got a call back because it was the weekend, I decided to call hospice.  The nurse on call said I could just give him Tylonol.  She sounded like she didn't know what to do, floundering when telling me what dosage to give him, so I wasn't very comfortable with her advise. Plus I didn't want to spend the weekend with a sick baby getting sicker until we could see someone on Monday.  Finally the Dr's office called and said we should get him to an ER babies that young shouldn't be having a fever like that. AHHH!!! I knew it! Stupid nurse! We took him to MUSC as usual.  4 hours later..yawn....we found out he had a UTI, which is not something 2 1/2 month olds normally get. It meant there was potentially an issue with his kidneys and/or bladder. More tests. But it burned me up even more with hospice. They were just going to let him get sicker.  On monday his regular hospice nurse called and said there was an issue with us taking him to the ER.  Hospice is not done that way. And if I took him back to the cardiologist there would be an EVEN bigger issue with that. Well it didn't take much for me to see that hospice was not in our best interest. They were not concerned about helping us care for Vance.  They were just collecting money while waiting for him to die!!  And I wasn't about to just sit by and let him die from neglect.  His heart giving out was one thing but anything else that was within my control to take care of was going to be taken care of. DAMN THESE PEOPLE ALWAYS DISCOUNTING MY CHILD.  I know he isn't suppose to live but WHY can't we treat him like he still is until he isn't anymore!

Reliving that moment

I read the blog of a friend today. She too made the decision to keep going with her pregnancy after receiving a terminal diagnosis. When her son was born, they, just like us, just basked in the glow of this very special very loved child.  The months of anticipation and anxiety over.  Now it's just this amazing life you hold in your hands.  Even more than your healthy children you praise God for bringing this little one into the world. You know that it was a struggle to get to this point and now the hope you had is tangible. It breathes; it's warmth; it's joy beyond joy. Then that moment...the one that lives in your soul forever...the one where you must decide to go forward with medical intervention or stop and let God take over.  So much of you wants to hold on to that life and just give it a chance. As I read, I relived that moment, the most devastating in my life,  surrounded by half a dozen strangers all with input as to how severe my child's condition was watching me shatter in a million pieces. Vu just silently rubbing my shoulders in some measure of comfort, but it's all on me. This is my decision alone.  I made the decision to continue the pregnancy, I carried him, I cried over him so many times, I dealt with the doctors, I loved him and now must make this decision not for myself but for him.  How does one go in an instant from having the most joyous experience to the most crushing?

It's been quite some time...

So it's been forever since I blogged.  Too much going on, to many places to write, share pics, etc that the blog has just gone by the waste side.  Sorry if you were following us.  If you didn't know already, Vance is doing wonderfully.  He was born Monday (fair of face and boy is he CUTE!) 11/23/2009.  They did an echo immediately after he was born but took him for another one after we got to spend about an hour with him.  He was gone more than 2 hours when they said I was "OK" to get out of bed to make the trip over to children's hospital where he was in the NICU. I doubt I was ready because I bled horribly and 6 weeks later I found out my incision had come open inside the uterus.  But we went so we could hold our precious baby boy.  Not knowing how long we'd have.  We were so elated he was finally here.  Everyone laughing, smiling, snapping pics like crazy.

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.

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.

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".