Make-A-Wish

So... I am going to start blogging David's Make-A-Wish trip.  I've been e-mailing the coordinator (Merry is her name) about the status since February was when we had the first meeting.  It's not September and we were getting no where.  I don't want to push something that we are getting for free but not knowing anything was driving us insane.

We found out we were basically waiting on the cardiologist to give David the ok to go, meaning he's healthy enough to go.  I'm  now thinking they never got it.  Well Merry re-sent is and started asking us about dates, first we said the last week September because the boys would be off school that week.  But we knew that was to soon, so then we said November.  So the first week of November the 4th - 10th.  She had not gotten the ok back from the doctor but she was going to reserve us a spot at Give Kids the World. www.givekidstheworld.org

I did call the cardiologist office yesterday to confirm they got it and they promised me that Dr. Goble would fill it out and return it next week!!!

So now we get excited!!!

So 9 weeks from tomorrow we are leaving on a jet plane to Disney!!!

Six Years

It is hard to believe my boys are six years old already.

How the hell did that happen?

Six years ago right now I was sitting in the ICU next to David's bed.  He was two days out of his first open heart surgery.  I was SCARED.  I wasn't so much worried about having twins, it was David's heart defects that had me freaked out.  This is something I've never dealt with before.  Everyone has a perfect baby.  I didn't even know this stuff existed.  We have learned so much since then.  We have come so far.

First grade already?

Wow... Just... Wow...

That's all I can really say.

How it's going...

So update should happen right?


First Lucy… She’s doing better. Had meningitis I think. Well it kicked her butt. I’m still not 100% sure if her cancer is back or not. I don’t ‘think’ so. But I did find out she was almost brain dead. I think the meningitis gave her a false cancer reading. I’m relieved she’s doing better but she still has a long way to go. She’s in rehab learning to do everything again, and gaining strength. Lucy has an older sister Ella, who is very close to her sister and then a little brother Jack who is too young to understand but misses his Mommy. Kate is Mom, she spends 99% of her time with Lucy. She inspires me, I have no idea how she stays so strong.

Then Owen… the link to their journal is on here somewhere. I love Owen. He’s tugging at me too because he’s so stinking cute. He’s looking toward a heart transplant. This one is heavy on my heart because he’s a heart baby like David. Owen is an awesome kid though and the bond he has with his older sister is AMAZING. I mean just WOW. Owen’s mom inspires me too. All the stuff Owen needs to survive, he’s on oxygen 24/7. She stays strong.

Both families are so far away. Lucy is in Tennessee around St. Jude I think. Owen is in Arizona I think. If I had my choice to meet anyone it would be Owen. I check my Journal’s every day for updates on these two families.

Back on Michigan ground though…

David is doing AWESOME. There is still a 1mm leak, it will be monitored with echo’s every three months. In the meantime let him be a normal boy so that’s what we are doing. We also found out that they are moving him to first grade! On his ADD meds when they tested at the end of the school year he tested above average in math and reading. One of them he was only one point below Matthew, and two below in the other. So WOW!!! Where has he been hiding that? They left the final decision up to us and we decided to go ahead and let him go to first and see what happens.

With summer here we’ve done one camping trip without David. Since Paul and I spent so much time already this year with David because of this two surgeries my Mom suggested we leave David with her and only take Matthew camping so he could have some alone time with us. Matthew made a comment to me that hurt, I had just taken the last serri strips off David’s chest and Matthew says “mommy do you still love me now that David’s heart is fixed?”. Why would he think that? So that sealed the deal on a Matthew only camping trip. I think he’s feeling much better now.

We have another camping trip the weekend after July 4th. My parents and David are going with is on this one. I’m excited sorta… I wish we had a camper instead of a tent but when hauling the boat it’s kinda hard to haul a camper too.

Surgery is over

David had his surgery May 31st, it went well.  They patches the hole/aneurysm in his heart but there was still a 1mm leak.  He spent two nights in the ICU, one in the bay and the other in private room.  His tummy had a hard time waking up from the anesthesia so he had to have an NG tube to drain the acids off his stomach.  We moved up to the floor (a regular room) on Saturday.  On Monday we were told we were going to go home after the chest x-ray and echo.  This echo was what was really going to tell us if we could go home or not.  If the leak was bigger then he would be going back into surgery.  We were hoping for it to be gone but it was still there but it  hadn't changed so we were free to go!

Last night David had a rough night.  He woke up coughing because same as last time he is having a hard time coughing up the gunk in his lungs.  But he woke up FREAKING OUT.  I think he was having a hard time breathing was afraid to cough hard because it hurt.  But all of a sudden his arms and legs hurt, like tingly.  I panicked thinking he was having a stroke and called his cardiologist here.  By the time she called back which wasn't that long he had calmed down.  I think he just had a major panic attack.  So he slept with me last night.

Today he seems to be feeling much better.  The boys were with my parents and my Mom stayed on top of the Tylenol for his pain.  I just HATE seeing my baby like this.

But on a darker side.

Some of my friends on facebook I had seen comment on someone else about their daughter Nora being at Mott with heart issues.  I investigated her and found out that Nora was born back in July and has been at Mott for all but nine days of her life battling heart defects.  I had remembered seeing the name Nora when we were there in January.  Nora received a heart transplant two or three weeks go.  Things looked good at first but then she had to go back on ecmo (life support) and just kept going downhill.  Why we were down there they though she was rejecting her heart.  Fount out she wasn't but had very little heart function.  They took Nora off life support and let her go to heaven today.

Then there is Lucy... the link to the blog about her is on the right.  She's about the same age as the boys.  A little older I think.  She's been fighting brain cancer.  Was doing really well, then she spiked a fever here a day or so ago.  Then was moved to ICU they thought meningitis.  Then her Mom posted this morning that Lucy's cancer is back and there isn't anything they can do.  Lucy will be making her way to heaven soon.

Nora's mom had someone tell her "Don't pray for God to heal her, pray for God to help you through whatever he has planned".

Katie just posted that comment yesterday and it's all I can think about.  Everyday I pray for God to heal David's heart, heal it so he doesn't have to go through this crap anymore.  But now I see that God has a plan for my baby and I pray he helps us through whatever his plan is.

Not Again

I cannot believe this is happening to us, to David. It will be four months since his surgery on Thursday and we are already headed for another one. Yesterday he went for a routine echo to check the work that had been done during surgery. That looked GREAT! But now there is another problem, one that was not there four months ago when they did his exit echo. This almost sent us to Mott via ambulance yesterday.


Dr. T has been working with Dr. Goble for the last year and she wanted him to do David’s echo before he left. He’s the one that gave us the bad new seven months ago that David needed another surgery, though we knew that one was coming. He was again the one to give us the bad news though this one was NOT expected at all. Just below the aortic valve there is a hold, causing an area to balloon out. Dr. T’s words were “That’s NOT supposed to be there”. It was not there four months ago and it’s already at a sage 5. Not totally sure what that means just that it’s not good.

Dr. T was so worried about the findings that he sent the echo down to Ann Arbor and had one of Dr. Bove’s head cardiologist look at it there. He agreed with Dr. T’s findings, but because David is healthy and not showing any symptoms that there was no need to send us down right now. They would have Dr. Bove look at it when he got out of surgery.

The call from Dr. T came in last night about 6:20pm. Dr. Bove agreed with the echo results and his secretary would be calling me with a date. This surgery will be within the next 2-3 weeks. I am not ready for this, this was not in our plans for this summer. This is not supposed to be happening. Why must we go through this again, why must David suffer through this again? It’s not fair.

I know there are kids out there worse off than David, kids needing heart transplants, on oxygen 24/7. Kids die from heart defects every day. We are lucky to have David, as healthy and happy as he is. Not everyone is so lucky. But I wish my boy could be normal. Normal like this brother. I wish he didn’t have all these difficulties and challenges to face.

I know that this too will just be a minor bump in the road once it’s done. But my anxiety has hold of me pretty good right now and I am stressing.