On the MOVE!

Yep needless to say Lilly is moving now! about time I know.... Friday afternoon she took her first "crawl-step" if that makes sense?! Oh well that's what it was anyway. Now she will go a little ways then stop, sit up, look and what she wants to get into then another few moves and she is there!!

Koda (8 weeks) our newest member of the family

Oh we had a VERY eventful weekend!! Friday Paul, the kids and I drove 2 hours to get a puppy that I had found online! Cute little mutt too (Koda) Like on the Disney movie "Brother Bear". Yeah anyway, picked up our mutt.. LOL...got home around 8 or so then got the kids ready for bed. Paul put Lilly in her crib while I was in the kitchen and I heard an "OH SH---!" Yeah you guessed it the pulling of the tube! Paul and I got it back in but, it refused to vent! So in to our local ER I went. Paul stayed behind with Dylan. Upon arrival, I realized that I forgot a extension, so I showed the ER doc my trick on how to flush without one (he seemed to think it was VERY clever....common sense stuff to me (no tube OH well)) We found that it was placed correctly but thinks it was a faulty tube. Guess what the CLOSEST hospital with the size we needed was Milwaukee....yeah! We are suffering with a faulty tube until Walgreens gets another one here... stuff only NEEDS to go IN anyway!!

Saturday Paul and I had the day to ourselves. We thought it was necessary to drive 2 hours to the cities (With his truck.. big old CHEVY) to get a flat screen and entertainment center! WOW!!! Got lost with a GPS finally ended up in traffic by IKEA (a furniture store RIGHT next to MALL OF AMERICA) where we found a center then thought it wise to try to fit the truck in a very small parking ramp to go to Mall of America to Sears! We looked for about 20 minutes for a spot big enough with no luck and ended up parking in what seemed to be a compact car spot.....Oh well! After we got home it took 4 hours to set up and install the TV and the center!!! Fun!!! Actually it WAS nice just getting away for the day (Thanks Aunt Brandi for watching the kids!)

Finished project! YEAH US!!

Another Good, Bad, and Ugly...

Better do the bad first because this good will out weigh it! Since Lilly's G-tube has been puy BACK it she has been having some minor issues....she has been uncomfortable, the site has been really red, and I can tell it hurts....which on a good note to that she is taking more orally :). Finally today I took her in, I figured that the pain would subside within a few days but we were going on a week; Lilly has an infection, nothing too severe but still. The doctor thinks that it was between the fall-out and put-in of the G-tube. Being that the stomach is not clean to begin with it really didn't help! She was put on Augmentin (an antibiotic) to help with all of the symptoms, it may even help her excema! Anyway she will be on that for the next 2 weeks.
Okay some good things! Elizabeth is doing wonderful with her new heart....so far so good! I can't even imagine the relief they feel! She is recovering nicely and with time, she will be home!
A Lilly Note: She is MOVING finally....backwards and backward circles....I don't even think she knows that she is doing it! I am hoping that by the end of the month she will at least be crawling (forward). She is getting really strong too! She can hold on to the couch and stand (until she notices she's doing it) and is starting to walk beside things, she has some balance issues still but I wont tell her that! Other than that All is well and parents of heart babies are truely blessed....EVERY ONE OF US! We never take those "little things" for granted!

GOOD NEWS FOR A HEART FAMILY

For all of the heart moms and dads that see my site and have seen the prayer requests for Ellie Potter, Ellie recieved her heart around 4am this morning! Surgery went well and the heart looks beautiful so far!! The next week will be a battle weather or not the heart will be accepted. From Dave and Gilda's posts everything is looking good and her O2 stats have been 100%!!! Please send some prayers out to make sure Ellie continues to do well with her new heart. Many prayers have been answered today....mine too, first for a heart and now for a safe recovery so Miss Elizabeth Brianne can GO HOME!!!
To Gilda and Dave....and Ellie, Prayers from here and all over the globe for the strength to get through this. You have made it over a long hurdle and it may be bumpy, but you're on the home stretch!! I love you all!

G-tube troubles!

Wednesday night Lilly's G-tube fell out....notice how I said fell and not came or pulled, well, there was no water in the balloon! We calmly gathered the kids and went in to a SAFE local hospital to get it put in and checked. Last time it came out they told us not to do anything with it until her Gasto doctor guy saw us....which is not unitil March, oh well so we took her and Dylan with us. It took us about an hour from fall-out to put-in but it had already started to close and he had a little trouble getting it in. It did go in though!
After the G-tube was replaced Lilly ate 2 oz within 20 minutes. She is upto 13 pounds and she is holding on to that weight. I think she is coming down with something because her and Dylan both have the squirts...so I am not figuring on her weight going up until that stops.
But we are doing well. I hope everyone has a good valentines day with all of the kissing and hugs and stuff, make sure that your kids are your Valentine too (not just your hunny)!

CHD AWARENESS WEEK!

This week is both of celebration and awareness! I would love for everyone during this week to wear a red something....anything in memory of the wings earned, hearts healed, and the future hearts to come. Spread the word!! Something small or something large you decide, just know that whatever you do you are making a difference to at LEAST one person.... and if they pass the awareness on, we can change the world!

Overall, sorry for the change of subject, everything is going good here. Dylan is actually having his 1st ever sleep over. Yep it's 10 PM and their watching Thomas the Train! Oh well they're having fun! Lilly is SLOWLY gaining, but I'll take it! I have found unless I am home all day, all week, it is hard to push the feeds during the day and if I run the pump too fast at night, it comes up anyway. All-in-all...GOOD.

God bless to all of us whose children earned their wings, going through pain, those healed and future heart kids!
Continue to pray for Elizabeth, Ben, Gabbi, Caden, and (oh my I could go on all night) Let's just say all of our heart babies and kids!

Another doctors vist

Well, Two doctor visits actually! Monday we went to Marshfield talk to the Cardiologist, Phycologist and Speech Therapist. All of which told us that we were doing a great job with Lilly and to keep feeding her. An ECHO and X-ray were done, which turns out everything is fine. Also Paul and I got our blood taken for research on this "doubled gene" thing that Lilly has....the results should be in by early next week! I am excited to see what they find out.
Today we had another synergist shot along with some misc. shots to continue keeping up with shots. Weight is alright but they changed her back to some Pediasure with Fiber. We are taking it SLOW this time and are shooting for a 50-50 ratio.

I had my 1st playdate with Dylan! It snowed and was about 25 degrees so I made Paul stay inside and out we went. I had so much fun! Just to hear him laughing and watching him play again. We also got some pictures of ALL of us enjoying the nice weather in the snow over the past few days. 

Lilly in her NEW supportive high chair

Dylan making Lilly watch Yo Gabba Gabba

I'm ready to GO!

Dylan and Daddy

Lilly's 1st snow mobile ride....lasted 4 seconds!