Thursday, January 29, 2009

More details

I'm sorry for my short post yesterday, I know that it left some questions. You know I have always tried to be upbeat and positive...if you've followed my Share blog I hope that you have seen that. I have my moments of feeling beaten down but I try to keep them few and far between. Yesterday after the second conference call in a week with Pittsburgh I felt lost. While I wasn't looking forward to Pittsburgh, I guess I didn't realize until yesterday how much hope I had put into it. I haven't been sleeping well for the last few weeks (oh who am I kidding how about the last 4 years ;) ) and I know alot of it had to do with anxiety over the move. But I was pushing past all that because I so *hoped* that this would be a quality of life improvement for Kyle. After talking to the Dr in charge at Pittsburgh she feels strongly that Kyle needs a complete GI work up in Cincinnati before we attempt anything else. Clearly there are other issues involving his whole GI system and it would be dangerous to push him at this point. I have to say I totally agree, I really do...I had major reservations about Pittsburgh, the word surgery had been thrown around and that made me nervous in itself...Kyle's already had 4 Major stomach surgeries, another one would be tough. I do not want surgery number 13, at this point. So maybe going to Cincinnati first could prevent that??! Maybe that's my positive thinking again, we won't know until we get there. My mood yesterday really wasn't so much the fact that Pittsburgh right now is out, it really was more of the loss of my hope for some relief for Kyle. The pain and the gagging is taking a toll on me, nice right...imagine being Kyle I can't begin to understand how he feels. But as his's been 4 years of pain...and it's exhausting. So I promise to be back to my positive and go get 'em self soon...really...but for now I'm honestly sad because I would do anything for this sweet, brave little boy and there is nothing I can do but comfort him and keep pushing ahead.


I had to attach this picture...Kyle made a pumpkin pie a few months ago with Nurse Meagan...he was so proud of that pie!!

Wednesday, January 28, 2009


Hi all

I wanted to get a quick post out to you before it spreads that Kyle will not be leaving for Pittsburgh on Feb 9th. He has not had the best week overall health wise, and the dr's there feel like we need more answers before they can safely accept him in Pittsburgh. They have recommend we go to Cincinnati for some testing that is not available in our area. It looks like this is our only options right now and we need to do what is in Kyle's best interest. While we know this in our brains our hearts are very heavy today. Kyle has been in pain for a long time, Mark and I both put so much hope in Pittsburgh that we both feel so deflated and sad today.

I will keep my blog updated with our plans...

Friday, January 23, 2009

Oh my!

I have so much to update but I needed to post this....Mark, the kids and I were able to go to Sunday River for most of this was amazing!

  • Grocery's and Gas $100.00

  • Ski lessons and rental equipment for the kids $500.00

  • Seeing our preemie ski like the other kids..... PRICELESS

I apoligize for the fuzzy picture, our digital camera is broken....of course! So I had to take this picture of Kyle with my phone...I promise to update on Pittsburgh tomorrow!

The kids that they told us might now make it, was skiing...I can't tell you how much we needed to see this right now!


Monday, January 12, 2009

The history of Mr. Big

It would be impossible for me to go back through the last 4 years and recount everything we have been through...but I'll try to give you the basics...for those of you that are new to our world.

My pregnancy with Kyle was rough..not only did we have numerous scares along the way, numerous hospital stays, but at 32 weeks it was discovered that I was developing pre-eclampsia. At this time I was hospitalized and placed on the dreaded magnesium and told we would have to wait and see. We made it about 12 hours before they said Kyle would need to come...this is the part that I hate...the part that I look back on and want to slap myself. I don't do well on the mag, (although I've never heard anyone do well on mag) I usually end up sick to my stomach, unable to see and a little (maybe alot) confused. So the dr comes in and says we are going to have to induce you tomorrow am, your blood pressure is not getting better it's getting worse so we think it's best to take the baby tomorrow. I was so incredibly happy...this nightmare would finally be over. The dr went on to say that Kyle would probably need to stay in the NICU for a few weeks learning to eat and growing. He may require a little oxygen but that shouldn't last long. Here once again I was a dummy never realizing what the NICU was or that while MOST babies do well, some 33 weekers don't do well...

Fast forward to the next day, labor and delivery was very difficult, out Kyle came and he was instantly taken to the NICU, he cried ever so quietly and that was it...

Within 12 hours Kyle was ventilated and we were told he may not survive. I won't get into all the heartache with the NICU, it was 9 very long was up and it was down..

When we brought Kyle home on oxygen and a feeding tube, we really thought we were in the clear. We again were so wrong. Kyle has had a total of 12 surgeries, he has spent over 1 year and 6 months in the hospital. He has been labeled with BPD, reflux, dumping syndrome and hypoglycemia. He also eats nothing by mouth. A few of you have asked why exactly is he going to Pittsburgh. Pittsburgh offers us a fresh set of eyes, they have a very intensive feeding clinic (kyle's stomach is like a cast iron doesn't move so it's having a very hard time processing liquids) Pittsburgh also has some testing that is unavailable to us here. Kyle spends a part of his day in a lot of pain. We are hoping this all will help us get to the bottom of it. Pittsburgh will be hard for him..he'll be away from his family and his friends..

I have to say that Kyle is brave, oh so brave, braver than most people I have ever encountered, so I know he'll do amazing when we get there.



There have been some questions about why we call Kyle "Big" or "biggie" that comes from his NICU days...when he was in the NICU he was a big baby at 4 lbs., I started calling him Mr. Big and it has evolved to "Big". The whole family does fact I don't know when the last time Alex called Kyle ~ Kyle... Some people have asked if it comes from Sex in the City..and while I *heart* that show...nope it has nothing to do with it! :)

Wednesday, January 7, 2009

Need your help!

My family has been so incredibly blessed, although the last 4 years have been incredibly trying for us and for Kyle we have always been so lucky to have the most amazing family, friends, neighbors, and care givers. I ask that today you all take a minute and pray for a very special little boy named Samuel. I meet Sammy's mom through my March of Dimes Share site and I instantly felt connected to her, like Kyle her little boy has a feeding tube, and struggles with his lungs. When I got the honor of meeting this sweet Mom face to face I instantly felt like she understood me. Sammy is very, very sick. I'm asking you all to pray and to pray hard for them.

Thank you...

Monday, January 5, 2009


Our day has not been the best day, Kyle was scheduled for an appointment with the GI doctor which was good since he's been so sick lately, with the sickness comes the gagging and retching and coughing. So we packed up and went to see her...I'll say I love this dr..I do, really..she has worked so hard to keep Kyle comfortable and as happy as can be. It's not an easy job for her. Our appt started off with a weight loss, not good. When we went in to see her she was concerned about his overall health...she's worried that he's not strong enough for the intensity of Pittsburgh...this was like a slap in the face. We have to go to Pittsburgh, Kyle's pain level with his belly is not getting any better. He has been in pain for 4 years now...4 years...that's to long. I started to stress, how can we not go..we need the testing, the new dr's, the feeding clinic. I completely understood where she was coming from I just didn't want to hear it. So I came home and called Pittsburgh, I spoke to the head of the feeding clinic and she was actually amazing. She told me it was up to us but in her opinion the weight loss, sickness and belly pain is more of a reason for him to come. She felt that he needs this so much we need to *hope* that he can get past this current sickness and that we can keep him healthy enough to proceed. We get final word on the 14th of January but as of now I think we are going to continue ahead.

While we were at GI she mentioned that Kyle literally has the worst belly issues in the state...ouch, that hurt a little. I feel tired right now. I can't imagine how Kyle hasn't been the best day for any of us mentally...I think we all are feeling the struggle of having this "illness" for 4 years..I think we all are tired and worried. It's so constant, I feel like I'm always waiting for the other shoe to drop, what next...?? This kid is truly so's hard to see him down right now. He's lived in pain for so long...


I'm posting a picture of the kids from the Boston Aquarium this summer...there's my girl always watching out for her brothers..

Friday, January 2, 2009

"you have the sweetest little boy"

Mmmm, yup...Kyle...he is the sweetest. Last week we had to have Kyle's yearly evaluations for OT, PT, and speech. You can't spend the first 9 months of you life in the NICU and then an additional 9 months in and out of the hospital and not be delayed...we had no idea what Kyle's delays would fully be. So many prepared us to expect major delays. Fine motor, speech, gross motor...all of it. I felt like I've been holding my breath for 4 years...waiting, I've been prepared for his medical side, I could read, I could listen, I could prepare. But we didn't know what all the medications, lack of oxygen, multiple surgery's would do to his brain. I find that these evaluations totally stress me out, I get so nervous for their tests and paperwork. The thing is, that I don't care really what his delays are, he's a miracle to me, but sometimes to see things in black and white really can make for a hard read. He did so great during the evaluation, he was still sick and on steroids but he was sweet, and attentive and smart...oh so smart! I think I cried at least three different times. The paperwork came and it wasn't wonderful, there are some delays mainly in fine motor but everything else was way beyond what I could have hoped one of the therapists was getting ready to leave she was the one to say..."you have one of the sweetest little boys" She is so right on!!