New Tube!

It is official! Lilly now has a AMT Mini One! It is so much smaller and looks so much better. I am so excited to try it out.

I should have left the room....

We are home, Mic-key button is in. I think that was one of the hardest days that I have had in a long while! Our original plan had been for us to get the Mini One button, but we all know that things don't go haw we expect them too. Our button did not get in yesterday so we had to revert to a Mic-key again. As we drove to Weston, Lilly began to vomit....often! By 40 miles in she was out of clothes and wearing Paul's sweatshirt. It seemed like everytime she would take the bottle, it came back up! Someone may say, "well, just don't feed her", I am sure they haven't had to hear a child scream for more than 5 minutes! She was hungry and even more-so because she couldn't keep anything down.
When we arrived, being that we REALLY DIDN'T have a "set" time we were in there an hour; with a crying child I might add, before we were seen. After they came in it went pretty fast. They asked if I wanted to leave the room... I thought I was strong, and part of me wanted to know what she had to go through.... I think, so I may understand. Well, let me just say, I didn't! I hope no one has to ever see  doctors dialating a child G-tube!! To put it bluntly, the shove metal rods into the hole to make it bigger, all of which without medication, oh wait....Tylanol. Yep, painful... I balwed right along her!
But now we are okay at home and 13 1/2 punds again. If you have noticed, she lost a pound in three days (it took us a month to gain it). Tuesday our new tube should be in and we goto Chippewa Falls to have it put in. This won't be a big ordeal, just a tube exchange. But I am excited for that!! 

Words from our dearest friends....The Buchmann's~

I have put this here in honor and memory of Carsyn. A child that died too young from hlhs. These are words from her mother.... very sad and also very true...

I feel like I've joined a club...not just any club. In this club, none of the members have asked to join. One day, they just force you to be in it. You don't get to choose...To be in the club, you have to pay an incredible price...a piece of your heart, a part of your spirit, and you have to give up a life you have always known. Once you are in the club, you never get to leave. We watch from inside the "fences" at other peoples lives and wonder if they will ever have to be in the club, or if they realize how lucky they are that they aren't in this club. You wonder if they know if this club exists...You push against the fences trying to get out, wanting so badly to be back on the other side- out of the club...sometimes I want to scream to please let me out of this club, please stop the fence from crushing against me. Please let me go back to getting pregnant with Carsyn... what could I have done differently? Then I realize, that this was not my choice, it was God's will. He wanted me in the club. I don't know why, I don't know why he would want anyone in the club...to be in this club, you have to give up your child...not as willingly as God did in giving up his only son so that we could live on in eternity, but you have to say good-bye...you have to feel their last breath this side of heaven...you have to memorize every inch of their face, hands, and body in the short moments you have left with them knowing you will not see them again until you meet in Heaven one day.


This club has some amazing people in it. People that do not in any way deserve to be put through what you are put through when you "join the club". We are blessed by their friendships, understanding, and points of view.

We continue to walk through life knowing many people who know they could be the next members of this terrible club. That is just not right. Parents should be able to sleep at night and not worry if their child will be breathing when they go check on them.

We know many people who have learned from "our membership" who now hold their children that much tighter. An hour at the park now comes before dishes, or laundry, or dinner...

Valuable lessons learned from a club that has no perks, no benefits...just a chain link fence that holds you inside. Allowing you to see the life you used to have. You can stick your arms through it and reach for what want to try and grab from your previous life, but only a few small things fit through the holes to get back through the fence. It really is nothing more than a symbol of your life from here on out. Parts of your life are held together, just like the links of chain that the fence is made of, but there are now many, many holes.

1 year and 1 month ago tomorrow, Carsyn joined us on this earth for her short journey. Never in a million years did I think we would be in the club we are now...I still can't wrap my head around the fact that children and babies die. I am going to pull as many pieces of our life inside those fence holes...fact is Carsyn made the life we had before better...she made me a better person, mom, and wife. She made me more compassionate to other peoples stories, and she makes me want to make a difference. If I don't pull parts of our old life through, I will forget how she has changed me. I am so grateful to her for the impact she has made on me, and so many others.

Honestly, I hate being in this club...but there is no way out, and I need to make the most of this membership. I need to make a difference to honor Carsyn. Knowing her and being blessed to be her mom is why this membership is worth it. For my life is better knowing her for the short time I did, than not at all...



Michelle

Weston here we come..

I took Lilly in this morning to her pediatrician to attempt to get her tube size up. We did manage to get from a size 8 to a 10, the 12 did not go in. ( I kind of figured that it wouldn't) So tomorrow Paul and I have to take her to Weston, a little sub-town of Wausau (about 130 miles away) to have her GI doctor, Dr. Fish, put a new tube (AMT mini non-balloon button) in and move up her size. This will need to be done with local anesthesia, which can be difficult with Lilly and all of her heart issues.


This AMT mini should be a good fit with her. I have high hopes that this will eliminate our past problems with the balloon tubes which tend to break. This is a link to her new tube that will be going in. along with some info about it. http://www.appliedmedical.net/amtmininonbal.htm. This will fit tighter to her skin, for less chance of her pulling on it. Also it works with all of the tube accessories that we have now (we don't need to learn about new ones). The ONLY down fall that we can see at this time is that if for some reason it does come out, it would mean an emergency trip to Marshfield. Non of our local hospitals will replace this (don't ask me why...it looks easy) nor can we replace it at home. If all goes well, she can have this tube for up to a year before it needs to be changed.

Please pray that all goes well tomorrow for our strong girl, and Dylan too. He has become VERY protective of his sister and cries when we leave him without her..... almost knowing that something is wrong. I am blessed to have two very passionate and caring children, and I count my blessings daily! I will fill everyone in to how we are doing and how it went soon.

Mini tube here we come

I talked with Marshfield Clinic today....URG do they make me mad sometimes! Walgreen's Option Care, the place we get our medical equipment, told me about a AMT Mini Non-balloon button that they can get in next day! i looked on-line and they look BETTER than the Mic-key buttons! I am hoping that within this week it can be placed and done with. I hate her going through pain! We are not using the NG tube to feed, I am so afraid it will come out, she is on her own until we can get this done. So I don't want them (the doctors) complaining if she looses weight this week!!!

What a weekend!

It happend again, for the last time that I could stand it! G tube came out.... another faulty tube (there is a pin hole, just like the last 5). By the time Lilly woke (cause she was wet and hungry) the hole was closed so much we couldn't get the mic-key button back in. I called the on-call GI doc who told us to rush to the ER. Yeah, right....with a sleeping 3 year old at 3 in the morning. Nope...not us, we knew that we needed something to keep the hole open, so my wonderful husband thought, " hmm, what about the tubing from the pump bag"! Geinius!!! It worked! we put it in and tied a knot it the other end taped it down to last us until morning. But, yes, my magical daughter pulled that one out too! By the time we noticed we both thought it was too late (but at least it was almost 8). Got the kids dressed, called Dr. Jermey (pediatrician) and headed for the ER.
Did I ever mention how much I think of our PED's doctor? Well, He came into the ER, yeah on his day off, and placed a NICU NG tube in with no issues. and recommeded getting what is called a BARD tube. It is less likely to come out..... for those "special/magical children". We should know by tomorrow when and what will happen, I just wish they would have siggested this 4 tubes ago! Lilly is taking all oral for tonight (don't wanna push it falling out again, even though we darn near duct taped it to her) Should do fine for tonight I'll keep updated for what we find.