Kyle's in Guam

Ok...well not literally....but check it out! http://twinbittersweetmemories.blogspot.com/

Mommy

8 years ago when I became a Mom I read all the books...searched the Internet....asked tons of questions. I was so ready for a baby. The first year had it's ups and downs but Alex was a perfect baby. (she was and I'm not just saying this because she is mine a text book perfect baby! Although trust me, she's making up for lost time now) After all the reading and the questions and the Internet search I was not prepared for how the kids would make me feel. I don't think anything, anyone can prepare you for what happens when you become a Mom. I love Mother's Day...really I probably drive my family nuts in anticipation of it.....but it's not because I want a day all about me (;) although come on it rocks!)....Mother's Day makes me slow down, the normal day stops and I have time to really look at my kids, listen to them a little more, snuggle them more, love them even more. It's a day where I let everything else go and take the time to realize how incredible life is, how incredible it is to be their Mommy. What an honor.

Our life isn't easy, it seems to get harder and more crazy every week.....but I can't imagine life without these 3 beautiful babies. My heart aches when I think about what each one of them has been through, but they are strong, and loving, and kind. Amazing.

XO
Kate

This face....

There is something about this face that makes me melt....

Kyle and surgery

Yesterday was our last GI appt before Kyle's big surgery at the end of the month. It was emotional....our GI is amazing and she always fights for the best for Kyle, I trust her fully and her advice and opinion matter greatly to us. She's nervous about Kyle's surgery....we all are.

Kyle's surgery will have 3 parts to it, he's getting a permanent J tube, which will be right below his G tube, at this point the J tube is our only chance of getting Kyle off the TPN. His PICC line will be removed and a central line will be put back in. We have mixed feelings on this, I like working with the central line better (it's more secure) Kyle has a bad habit of getting infections with his central lines. So we'll have to see how this one goes. The third part of his surgery is his esophagus, he has a fistula (two tracks) that leads into his stomach, so instead of having one opening into his belly he now has two. This is from surgical material that eroded his esophagus and has planted itself inside of his esophagus instead of on the outside. This is pretty major and could cause the most complications. He could lose part of his esophagus. I feel sick over this and I am very concerned about this part of his surgery.

We started talking to Kyle this morning, just casually that he will have surgery soon and will have two tubes instead of just one, of course that sweet boy just wants to know if the surgery will make his belly stop hurting...he continues to amaze me with his strength and spirit. After 13 surgeries he would have every right to pitch a fit and be upset....but not our Kyle....his eyes were so bright this morning....amazing how you can get strength from the littlest person. I am so proud of him.

In other news, we did our March for Babies on Sunday..it was beyond amazing. Because of so many of you I passed my goal and it felt so good. We walked with family and friends....who I hope know how much I appreciated them coming out early on a Sunday and walking 5 miles! :)

I am attaching a picture of our shirts, we are starting a new fundraising for the March of Dimes Share your story website and Angel Flights, all our proceeds will be split between these two charities, if your interested in a shirt.... you can order one at TeamKyle2004@gmail.com, they are 25.00 and shipping is included, please include your address and size of shirt (we have all sizes)...

Love

K

Coasting along

Day to day...hour by hour at times...coasting....waiting....I feel like we are truly living day to day...Kyle has been so up and down that I'm finding it hard to keep up. He is still on the IV steroids and we are concerned that this might be the best we can get his lungs until surgery. He's getting tired very easily and complaining of his "breathes" as he calls it. His color hasn't been great and he is back on O2 more....which he is ok with...(this is both good and bad) Still on the 20 hour tpn...which he also has been pretty good about. His blood sugars have been to high which is a concern and we are hoping they will get better after he's off the steroids.

It looks like surgery the second week of May, it's a compromise between his GI dr and pulmonary dr...GI wants the surgery now, while pulmonary is more cautious with his lungs. At this point I'm not sure how I feel, so many emotions about this surgery...my brain is having a hard time processing it. I don't know how to prepare him for this, he's 5, he's smart and this will test his limits...I think it will test all our limits.

Jack and Alex are good, so patient.... Gosh I wonder what I would do without them...

Love

K

Yesterday

Kyle's test went smoothly with no big surprises. Things pretty much looked the same way they looked when we took a look in Columbus....which is good. Moves us one step closer to surgery. At this point we are in the one month countdown. As well as things went yesterday, we are paying for that today, last night and today have been rough on our little guy....you just can't put that much liquid into a stomach that doesn't work...it increases his pain level to an all time high.

Today we are off to Mimi and Papa's house to visit with my sister and her little ones, the boys are over the moon about it! Should be a great day!
I'm hoping to take lots of pictures!!
xoxo
Kate

Trying to move forward, yet feeling stuck

I should start this by saying we had a great weekend....we all got some sleep, we loved on the new puppy, we hung out as a family...it was great. The only issues have been the on going issues with Kyle's lungs. Any exercise or activity is leaving him winded and in need of extra oxygen and a treatment. We saw pulmonary today and he was not very happy with Kyle's lungs and energy level. It's another week of IV steroids and an additional 3 days of antibiotics...all of which play havoc on Kyle's body. Basically it's another week of 22 hours on the IV. It's hard to explain that to Kyle, I feel like all I do is try to reason with him....I try to keep it fun and I'll admit I bribe him, anything to stop the tears from falling. We now start the countdown of a month until surgery, he has to stay healthy or we have to start over, his pulmonary dr is concerned that since he is refluxing this may be the best we can get his lungs...which is a big concern...his surgery is a big one, he needs to be perfect. Him not being perfect is a very scary feeling.

We head to the hospital in the am for an upper GI, the one test that Kyle hates...it's going to be a long morning and I know we will both be happy when it's over. Hoping we don't see more reflux then before and hoping that we don't see any major red flags that would force us to move up surgery.

On top of that Kyle's labs weren't great this week...his White Blood cell count is very high...hoping that is not an indication of an infection coming...I've been driving him nuts today asking him how he's feeling, pretty sure he's ready for a break from his Mom. :)

Tonight I'm sitting here in front of the computer and usually the words come so easily to me...tonight not so much. I'm anxious...nervous, I hate to think that I'll feel this way for the next month....yet then I realize a part of me has felt this way for 5 years. The ups and downs...both are extremes, the highs feel so amazing but the lows feel so incredibly low.

XO

Kate