Touched my heart!

I must say thank-you to everyone for all of your kind words and support. I must also say that I cannot believe how giving and forth coming people are. The love I feel from all of my friends and family is just too much for words. This was a post that a friend that I met just a few short months ago when she was pregnant with her Angel Anika was to be born with CDH. Anika was born six months ago yesterday. She earned her angel wings. I was so hurt when I heard that she has left this earth. And I was broken over this families loss. Well her mother dedicated a post to me today. It again brought me to tears....but for different reasons and I wanted to share it. Thanks so much Lori.

Yesterday was Anika’s six month ‘birthday’
I’ve been mulling over what to post for a while… I want to put down on ‘paper’ as it were, some of her days here on Earth, but cannot seem to bring myself to. It’s still too painful, and too full of joy for life, and wonder at it all, and respect for the Dr.’s and Nurses who cared for her, and so many other things.

Yesterday we also heard some difficult news about a friends baby boy who was born prematurely but will have THE MOST loving, caring, compassionate family you can imagine… his Mom is having a hard time and I wanted to dedicate this post to her.

Bobbi you are amazing and your children and your family are blessed to have you!
A very good friend sent this to me a while ago, and now I want to share it with you (I don’t know who wrote it):

Invisible Mother……

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I’m on the phone and ask to be taken to the store.
Inside I’m thinking, ‘Can’t you see I’m on the phone?’
Obviously, not.
No one can see if I’m on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.
I’m invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?
Some days I’m not a pair of hands; I’m not even a human being. I’m a clock to ask, ‘What time is it?’ I’m a satellite guide to answer, ‘What number is the Disney Channel?’ I’m a car to order, ‘Right around 5:30, please.’
I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated sum a cum laude – but now they had disappeared into the peanut butter, never to be seen again. She’s going; she’s going; she is gone!
One night, a group of us were having dinner, celebrating the return of a friend from England .
Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in.
I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself.
I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, ‘I brought you this.’
It was a book on the great cathedrals of Europe ..
I wasn’t exactly sure why she’d given it to me until I read her inscription:
‘To My Dear Friend, with admiration for the greatness of what you are building when no one sees.’
In the days ahead I would read – no, devour – the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work:
No one can say who built the great cathedrals – we have no record of their names.
These builders gave their whole lives for a work they would never see finished.
They made great sacrifices and expected no credit.
The passion of their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees’
I closed the book, feeling the missing piece fall into place.
It was almost as if I heard God whispering to me, ‘I see you. I see the sacrifices you make every day, even when no one around you does. No act of kindness you’ve done, no sequins you’ve sewn on, no cupcake you’ve baked, is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.’
At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.
It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.
When I really think about it, I don’t want my son to tell the friend he’s bringing home from college for Thanksgiving, ‘My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand basted a turkey for three hours and presses all the linens for the table.’ That would mean I’d built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, ‘you’re going to love it there.’
As mothers, we are building great cathedrals. We cannot be seen if we’re doing it right.
And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
Great Job, MOM!
Share this with all the Invisible Moms you know…I just did.

Just so broken.

We met with the neurologist today to be told that the damage is extensive on Kenny's brain. He proceeded to tell us that the gross motor skills will be greatly dimished, actually he said it would be suprizing if he walked! He also said that he would be greatly developmentally delayed. I just don't know what to think. Of course I am thinking positively. But really, I'm ticked! Why do I have 4 kids and 3 of them will have to work so much harder than the rest??!! I know that we are 'special' parents getting 'special' kids, and that there is a reason for these gifts being given to us. But it doesn't mean in the interm that I'm not hurt, upset, scared, or even down right Pi$$ed off!!! I don't think that I'd be normal not to think that. I have 4 beautiful children. I love them so much. It pains me to have to live each day to try and help them get 1 step forward to everyone elses 3! I'm lucky to have all of my kids with me. I know that. I just don't understand why???!! Kenny will be having an EEG sometime this week to check for seizure activity as well. We still don't know why he's having Brady's (bradicardia). So maybe this will help with some answers. It's funny. Kristen was in the hospital with CDH for 3 months. Kenny was a preemie at 8 weeks early, and he's been in the hospital already half of the time that Kristen was with a life threatening abnormality! I think that I'm just going to need some time to heal and deal with all of this. I have to say, knowing that my baby was going to be born 'sick' (CDH) was almost easier to deal with than having a baby that I thought was healthy and well and be given this news today.

Can't our kids just catch a break??!!

So the results of the head ultrasound for Kenny came back today. There is shadow's on his brain. What does this mean??!! Well essencially brain injury. They will do an MRI on Monday, and the dr's say we can bring him home on Tues. So we'll see how that goes and plays out. I am angry. I know that my children are here with me. I love them so much! But why can't they just catch a break??!! I don't really know what else to say right now! I'm just mad, frustrated, sad, and whatever else emotion I have right now and can't put in words. I know that my children will do well. I know that they will succeed. I just don't know why they will have to work so much harder than everyone else to get there??!! Anyways, I think that I should go to sleep right now, and I'll meet with the dr's tomorrow to see where the shadow's are and potentially what the challenges may bring.

Could he be on a good trend??

It's been now 26 hours since Kenny has had a Brady. Maybe the kid really does want to come home!! It's been so stressful trying to balance both world's right now. The kids need me here, and well, I need to be at the hospital too! Kenny should know who mommy is, and not think that he's got lots of them that tend to him when I can't.

I'm not holding my breath until I get the phone call that I can pick him up and bring him home. He still needs to do a carseat challenge.

If it was feeds that had been holding him there, I could have understood that. Well I could have brought him home with an NG tube in, and cared for him. I'm familar with all of it from when Kristen had her's. Not ideal, but at least he would have been home to get strong here. He's now 6lbs 4 oz! Big boy in the NICU!

SO Frustrated!

I know I can't complain. It's only just been two days over 4 weeks. But he's still there!!! Kenny is actually 37 weeks gestation tomorrow. Usually preemies come home between the 36-37 week. Well there doesn't seem to be an end to that as of yet. He's STILL having brady's. It's just so frustrating. I'm exhausted to boot! I have to balance visit's with him, and being at home to get the kids to school. I know he'll be home soon enough, but I thought that kids were supposed to move out at like 18, not straight from mom's womb...lol!

Can anyone help me figure it out!

I get nice comments left on my posts here, but I have no idea that they are left for me until I check my blog. I want everyone to know that I do get them, and I wish that there was a way that I could respond back the same way we do with facebook. If you would like you can always add me on FB as well! you can search my key name thing of Bobdoble. Thanks everyone for all of your support and nice comments.

Trying all bottles

So I convinced the nurses to try to bottle feed all bottles with Kenny now. So we'll have to see how that goes. He's also started to have less Brady's! YAY. So my guess if he keeps this up is that he will be home next Thurs. But as we all know, it's the baby's schedule, not ours...lol.

First days!

Courtney had to have her picture taken too!

My little CDH miracle baby! Her first day of preschool!

Handsome Joe in his new school uniform!

So Joe started Kindergarden yesterday, and Kristen starts pre-school today!

Taking some full feeds by bottle!

Well Kenny is starting to take full feeds by bottle. He did three for me today! so still working on feeding, and then the damn Brady's that he's having. That's where his heart rate dips a bit! Aparently a preemie like thing to do. My other's didn't, but every baby's different.

On another note, Joe start's kindergarden tomorrow! He's so grown up now! And the next day Kristen start's preshool! Yikes! They are both doing so well, and growing up so quickly!

New Cochlear Implant Released!!!

It's amazing to see technology and how it helps my daughter hear! And then to see that there is already something better out there is even more amazing!!!! http://linkerland.com/new-cochlear-nucleus-5-system-raises-the-benchmark/

http://video.aol.co.uk/video-detail/cochlear-introduces-nucleus-5-implant-system/3257376690

Just a couple of links showing what it looks like. The FDA has approved it for the US right now, and I only imagine it's a matter of time before Canada gets it too!

Bath time with mommy

I gave Ken his first bath today. Well, I'm sure that he's had sponge baths, but not a real one. He was actually quite quiet! I was suprized. I think he actually liked it! He's been doing well with feeds. About every second feed he bottles half of his feed. So I'm happy with that. I let him know today though, that I won't allow this to still be going on in a week and a half! I'm ready for him to come home, and for all of us to begin our lives together as a BIG family!! Well big by today's standards anyways. And he is my last little one, so I'd like to start to be able to enjoy him too! But I know he will do it in his own time.