Sunday, September 26, 2010

We did go home after two nights

I am so bad once I get home to remember to update my blog. We got discharged on Tues. So only two nights in the hospital. Kenny is doing well now. We had a follow-up appointment with Neurosurgery on Thurs. Everything looks good so far. they said that they'll do a repeat MRI in three months time. But for now, he's looking good. we have a follow-up with the pediatrition tomorrow. I'm going to ask for asthma testing. I don't believe that it was just broncitis with a cold. The way that he was breathing and wheezing took me back to the day's that my dad had some bad attacks. Even if they can give me some puffer's so that I can 'rescue' him before it gets bad...that would be very helpful.

Tuesday, September 21, 2010

Shamus Aiden Grant

My best friend delivered on Saturday morning. Shamus Aiden Grant was born sleeping on Sept. 18, 2010. He was helded by his mommy and daddy 18 weeks too early. The love him was and is unconditional. These parents have had such a heart break, but such a beautiful birthing experience with the Dr's, Nurses, and Chaplain's support at the hospital. We all continue to pray and surround them with love and support as we can. I have posted with permisson a video montougue that Shamus' Grandpa put together. It is truley beautiful, and it is something that will be with all of us forever.

I unfortunatly don't know how to directly put up video's on the blog yet, but here's the link.

What is the reasoning? Why do things like this happen? Why does the pain have to be there? Why do we need to be put through such heart break? Why are lives cut so sort before they begin? Is it Ok to be angry at God? If not who do we get angry with? Is this just a test to get us to look for our anwers? If so, this test suck's sh!t!

I wish with all of my heart that there will be healing and softening of everyone's hearts involved. I know that the pain will never go away, and it will just be more of a day to day coping.

Thank you to everyone in the blogger world that finds my life interesting enough to follow for all of your thoughts, prayers, and comments. I know how much they mean to me, and can only imagine how much they mean to the family.

Monday, September 20, 2010

We've been admitted

We came home early from Timberline Ranch on Sunday morning, Kenny was breathing very quickly and wheezing. So off to the walk-in clinic I go. As soon as the dr came in, I just said please don't send me to the ER. Cause I knew. So off to the ER we went. His stats were 85%!! Good thing I came in. So really, we bypassed everyone in the ER waiting area. I got to the bed, and there were three people on him. the RT gave him a dose of ventilin, and he immediatly got better. But his stats without O2 were still too low. So here we are spending the nite in the hospital. They started him off with 3 L's of O2. Then before bed he went to 1.5 L's. Now at 1pm on Monday he has been off of all O2 for an hour and a half. He doesn't have pnemonia, and he doesn't have RSV or influenza. So it's just him being sick and we go from there.

Sunday, September 19, 2010

Just because we love you.

The family has asked me to post this for them. In respect for them please let's just give them space in their grieving and just continue to pray for their healing and strength.

"Please no questions at this point in time. My heart is broken beyond repair right now. Our twin baby boys have earned their angel wings and the only comfort I have is that I could hold them as they went peacefully away. I will love them both until my dieing day...come what may."

I am so broken for them. I just really don't know what to do or say. I just wish beyond anything that I could take the pain away. Please continue to pray for thier family.

Thursday, September 16, 2010

A devastating decision.

I don't even know what to write. I feel so bad for my friend and her husband. I just ask for prayers.

Tuesday, September 14, 2010

Please continue to pray

Please continue to pray for my friends strength. The news from the hospital was still not good. The babies would not survive birth. They have to make a heart wrenching decision. I just ask for all prayers to embrace them with love and strength.

This is very hard for me. I don't want her to hurt, and just wish I could take it away from her and her husband. I wish that in times like this I could say that everything happens for a reason. Because in times like this I don't truely believe it. I get very angry and frustrated. I just hope that their pain doesn't last long. I know that's not going to happen, but I do have that hope.

Monday, September 13, 2010

Please just pray

My friend has not gotten good news from the Dr's about her situation. She doesn't want to talk to anyone right now. I'd just like to ask for prayers. My heart aches for them, and I wish that I could put a box around them to protect them from all of this hurt.

Saturday, September 11, 2010

Some things are just SO unfair!

I had my best friend over today. She is 20 weeks pregnant. I have known her for the last 10 years, we worked together when she was in high school (that's how we met), we had a baby 5 months apart, I was in her wedding party (along with all of my kids...imagine, and now going through this second pregnancy with her!

She had an ultrasound last weekend for gender determination. I joined her for that for our girls weekend away. We found out the gender together. Daddy doesn't want to know, so I won't divolge the information. The tech asked her if she could be off on her dates. She hadn't had a diagnostic U/S yet. The tech also said that she had lots of fluid. We as CDH parents know that when there is extra fluid that there is a chance that there can be something wrong. We went upon our day.

Well yesterday she went for her diagnostic U/S. She said that it took forever because baby wouldn't sit still. They got their pictures, and went home on their way.

Today she is visiting and gets a phone call from the dr's office. They need to see her immediatly! My heart sank! I think that he's did too. She's been there throughout all four of my pregnancies.

I told Gary that I was going with her. He said fine! Even with leaving him with five kids under six! He handled it amazingly!

We walked in. And sat. and sat. and sat....cause we all know Dr's office's. The Dr came in and said..."it's not good news". My heart dropped. I myself have heard those words, and know exactly how she's feeling. The baby is actually the heart....not looking like a healthy heart. But really, this is a smaller hospital with older equipment. She is being refered to Women's hospital immediatly for a level two U/S. The dr also said that he feels that she needs to be prepared to make a decision. And the impression that I get is that it is of that to terminate.

I am soooo angry!! How can this be happening to my best friend! She and no one should have to EVER be told to make a decision.

I just really hope that I will know how to support this family through this in a positive way. I just pray that Women's will be able to give her HOPE!

I will update as she gets news. Please pray for her, her husband, her 2 year old little boy, and her unborn babies.

Tuesday, September 7, 2010

Back to School

Joe's first day of Grade 1!!!

Wow! I just remember holding this little being in my arms being amazed at the miracle of life, and knowing that I incubated this little boy. Well this little boy is now 6 years old, and over 50 lbs! That's huge from the tiny 5 lbs 11oz at birth! If there was only a way that they could know how much we loved them then, and how much more we love them now.

Kristen's first day of her second year of Pre-school!!!

She walked in there like she owned the place! Well she's only been going in there for the last 4 years! (to drop Joe off before he started school). It was no big deal to her. But to look back at the memory of her lying so helpless when she was born. And to see a machine breathing for her, knowing that the machine wasn't enough to help her body. Her lungs just needed a break! And to see her on ECMO. To have the phone call, "there is shadowing in her brain" and not knowing if they had to take her off immediatley or not. They didn't it was an old injury, probably from birth, but who really knows. To watch her FINALLY breathe on her own at 2 mths old, to take her home at 3 months old...well it was my birthday really! And now to try and slow her down today! She will never know what a miracle she is to us!

Courtney, waiting for her first day of school....well it's next year!!

Courtney is sooooo excited for school, she just doesn't really realize that she doesn't go this year yet! Poor kid. She was my biggest little one of all at 7 lbs 4 oz! The only baby that we got to hold right away before they took her to the Special Care Nursery. What a joy that was for! Whatever that is. Now to try and get the kid to stop asking to 'eat'!!! lol!! You'd think that I never fed her the way that she always want to snack!

Kenny, well, he just went with the flow today!

Such a tiny little guy only just over a year ago. Little did we realize what the last year would have brought to us with him! He's finally starting to be able to just be a baby...maybe a year too late, but better to be late than never! He just looks up at you with these BIG blue eyes, just filled with love. Knowing how much we love him!

What am I going to do when they graduate!?

Friday, September 3, 2010


Kenny has his new stroller! It's a Kimba stroller with great support for his head and trunk! It's such a smooth ride too! I love strollers. This one though, you can't miss that he is a special needs kid. That suck's, but in reality, it's the truth. And I can now apply for prime parking! Yep, I applied for handicap parking. That will make things easier. I usually park a mile away so people don't park next to me. It's too hard to get all the kids in when people park 3 inches from my doors!

And with handicap parking came the discussion of wheel chair accessable vehicle. A regular minivan with the adjustments won't work for our family. We are a family of SIX! So what does that leave me??!! Well as far as I can figure...a Dodge Sprinter. Yee Haw!!! I could pack that thing

GERD!! Really!

I took all three older kids to the dentist this week. Kristen has the most awful looking teeth. And she's such a smiley child too! They are crooked and yellowed. Apparently from med's and stuff from her first couple of months in the ICU. I have been given heck for not brushing properly, not doing it enough, well and it goes on. I know that the dentist does my other kids too, so wouldn't you see from the other two that I DO brush the teeth?! Anyways, I took her in this week. I knew that we were doing a bunch of 'scaling' and we would be strapping her down to a backboard to keep her still. And to be safer to everyone involved. So we strap her down. We do the scaling, she does the screaming!And does she ever SCREAM!! Of course, she hates Dr's! Well afterwards the dentist looks at me and askes "reflux, GERD??" And I said yes for the first two years of her life she was on meds for it...common for CDH kids! Well the acid has eatten all of the enamal off of her teeth! I'm so confused as to how it takes 3 years for the dentist to come to this conclusion! She's seen Kristen from 18 mths old, when I noticed the discoloured teeth coming in! She is going to refer us to a specialist to get caps put on some of her teeth! Poor kid! And then we get home, and I look at her hands, and well because she fought the restraints so bad, she has rubbed the skin off of her knuckles and hands! Geeze what to do next time??!! Gloves?? Long sleeved shirt??