Our adventure!

Happy Halloween!! I love this holiday, seeing all the cute little witches, vampires, and ghosts walking around. This is Xanders 1st Halloween, but will be inside tonight helping mommy hand out the candy to all the goblins and staying warm!

We've had some big adventures these last few days. Last week on Thursday Xanders NG tube was bugging him tremendously, I decided that I was not going to retape the tube down if it started to come up. As the day went on he kept pulling at the tape and was making that tube come out more and more to where it was starting to bug me, so finally I had enough of it and pulled the tube out, knowing that Xander would ether need to start taking that bottle or I would have to put it back in. Ether way I was willing to do whatever I had to.

Xander took 2oz of his bottle that night before bed and had half of his pear baby food.

Friday he woke up and wanted nothing to do with the bottle (frustration for me) he would how ever eat baby food so I stuck with that. Aunty Libby came with rice cereal, baby crackers and baby puffs ( she's pretty excited about all of this like nick & I) Xander LOVES the rice cereal.

Xander that day still wanted nothing to do with the bottle and I knew that he HAD to have is formula in order to get all of the calories he needs and to stay hydrated.

Friday night he took another 2oz before bed, still not enough of what he needs. Saturday we all packed up and headed to dylans football game.

Our cute 13 year old neighbor also babysitter snatched Xander up as soon as she arrived. She and Xander have a special connection and he smiles so much when she is around. She took his bottle and wouldn't you know it the little booger ate all 4oz's of his bottle for her!!

As the day went on Xander would have some bottle but not big amounts. We decided to get him some pedialite just to keep him hydrated. Of course he loves that and ate that without a fuss. Obviously he has a sweet tooth!

During the night Saturday he finally became so hunger that he ate 8oz's of his formula ( thank you god), but of course the next day all he would want is his baby food.

I have to admit that it's very frustrating knowing that he HAS to have his formula to help with the HIGH calorie diet he is on but will not always take it, but it's a learning process and I will stick to it until he gets it.

I think for now Xander will be tubeless during the day and I will place his NG tube in each night just to help make up for calories he lacks through out the day!

O how the year has flown!

It's so crazy on how fast 2011 has gone, it really feels like just yesterday it was February and here we are now in October 14 days away from Halloween.

Sooo not ready for the winter and the sicknesses that we will be avoiding. I wish there was a fast forward button at times and I would only use it during the cold months where it seems everyone is ALWAYS getting sick!

Well Xander as of October 2nd is now 8 months and is still weighing in at 11 pounds 14 oz. I think he may have a complex on gaining weight lol. He is doing so great after his Glenn and you can really tell the difference in him too!

We have been working with a therapist that comes in twice a month and helps with his mobility and feeding. Xander has shown no interest in a bottle what so ever so we have passed that and have gone straight to a tippy cup which he loves.. Our goal as of right now is to have his NG tube out by thanksgiving!!!

He has cut two teeth in the last week making him super cranky and has decided that sleep is not necessary at night ( huh maybe not for him but sure is for me lol) so now we get to experiment with essential oils to help calm him more at night and relax Jim just a bit more ( hmmm can't imagine on why he may be tense lol).

Holidays are coming up and things will be really different with them and what we are used to but it's all for a good reason. We must make sacrifices when others feel they do not.

Xander will not need to go back to his cardi doc until he is 1, so in other words PCMC we love you dearly but we better not see you until February!!

A SHOT IN THE ARM FOR XANDER!

I stole this from one of our heart buddies blog and its exactly what we want to say and feel! Thank You Mollie for reading my mind!

Well the flu season is among us....BOO!!! While some of you might find this "overboard" or "harsh" to us it is not. To us I would explain it maybe as harsh reality. For Xander's safety we are advising that if you plan on being around him AT ALL that you will get your flu shot. There is the assumption that if you get the flu shot you will get the flu, well guess what that is false. This is straight off of the CDC's website:

The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:

•Soreness, redness, or swelling where the shot was given
•Fever (low grade)
•Aches
•Nausea
If these problems occur, they begin soon after the shot and usually last 1 to 2 days. Almost all people who receive influenza vaccine have no serious problems from it.

The flu would be life threatening to Xander, and it wouldn't be a question of "he might be admitted" to the hospital if he got it, it is a guarantee that he would be admitted and it would be to the ICU, I don't think YOU would want to be the cause of that, would you?

Because of the risks if you don't have your flu shot you won't be allowed at our house this winter that may seem rude but I'd rather seem rude and avoid the hospital this winter than hold my feelings in and be at the hospital away from KayLynn, Dylan, Trever, Anthani and Nick for weeks because Xander caught the flu. Also if we do decide to attend family events such as Thanksgiving, Christmas Eve, Christmas, or New Years Eve parties outside of our house and we bring Xander, if you plan on holding him or getting close to him we will be asking if you got your flu shot and if you didn't you will just have to wait until the summer to cuddle with him. The more people who get the flu shot the less people who get the flu, crazy concept right? So really it isn't only for Xander's protection but for your own family's also. I know a lot of you have kids and babies in your homes so do it for them also! So come on all the cool kids are doing it and get a

SHOT IN THE ARM FOR Xander!! ♥

Best anniversary present EVER!!!

So I just have to say that today has been the most AMAZING day ever..

Xander had his post-op visit up at PCMC this morning and it also is mine and Nicks 10 year anniversary! We arrived at PCMC at 10:30am and started the visit out with a chest x-ray. we then headed over to cardiology to check in. Once in the room they had us turn off his oxygen to test how he would do on holding his oxygen up. Unfortunately Xander can only keep his sats in the 78-80 area which really they would like him to be at least 80-85 if not 90 area, so we will be staying on .25 oxygen for a bit longer but hey we have SOOOOOO come accustom to it that really we don't even notice it anymore. His EKG came back wonderfully and his chest x-ray showed no fluid anywhere YAY!!!!! Of course there is always that chance that some could come at a later time but we know the signs to watch for and know what to do if we feel things are going down that route. Needless to say Xander passed his post-op visit with flying colors besides weight gain. We are still sitting at 10 pounds 3.7 oz he has not gained anything since he had left the hospital.

Next we went to have our swallow test. You know how you just get that feeling in your tummy that you know they are going to or are not going to pass? Well I had that feeling today but that he would pass this time around and Drum roll please..................... he PASSED!!!!! Yep that is right our Mr. X totally passed his swallow test YAY... Now instead of having an NJ tube he now has a NG tube ( instead of going directly into the intestines it is now going in to his stomach FINALLY) I seriously can not think of a better anniversary present than that!!!

So for the next 24 hours we will be keeping his feeds at 27 calories at 27 ml and hour if after the 24 hours he has been able to tolerate it we will be moving to 27 calories at 54ml every 2 hours. Once at that dose for 48 hours we will then move to 27 calories at 90ml every 3 hours and watch him for another 24 hours to make sure all is good. If we can get to this amount and have no problems we are then able to start giving him food yes FOOD ( I am so excited about this ) by mouth.. HECK YEA!!!!

I cant even begin to tell you how ecstatic we are right now about this visit and everything, we definitely have such a fighter on our hands and we have been so blessed this far on everything he has gone through and will continue to have to go through but it just shows that no matter what he will fight to no end!!!

Now that surgery is over and we are all good life will possibly get back to normal in the normal way of what we have become accustom to YAY!!! Xander will be having his next visit on September 19th. Early learning will now be coming in each month possible each week to start working with Xander on his speech, occupational, and physical therapy so that we can get him where he should be at for his age.

Having a special need child is extremely rewarding and is very challenging at times but is these rewarding milestones that makes all the difference in the world and helps you know that what you are doing is working for your child. But really there is so much more to come and we all say BRING IT!!!

Home sweet Home!!

Xander made his way back home to us on Tuesday July 26th. That Tuesday marked the one week after surgery. I am still amazed at how we were able to bring him home just one week after all of that. Can you even imagine that being you? Think about it really, if that were an adult most of us would probably just Ly there and beg to not be touched, but when it comes to a baby, child, or teenager they seriously show all of us adults up in the recovery department. Just goes to show that these little ones mean business..

Xander came home on .25 of oxygen and his NJ tube (yay for not bringing any other tubing home lol). I have to admit that the first 2 nights home were pretty rough. Xander has to get used to all of the new blood flow going from head to heart and is still healing from the chest and tubes incisions, so he has been a bot of a pill, but now things have started to level out and he is becoming himself again.

We have our post op visit on August 10th which also happens to be nick and I's 10 year anni. Would want to spend the day any other way to be honest. Xander will also be having another swallow test done on that day. We really need to start working hard on this now that we have a 3-5 year gap before the next surgery so that he can at least get away from the tube. We were told that we would not be able to do a G-tube like most kids are able to do, due to some underlining reasons that have happened in the 5 months he has been here. It could cause some serious problems for him.

Early intervention will now be coming to our home each month to work with Xander and help get him caught up developmentally. I'm thinking it wont take long to be honest but you never know with Mr. X since he has his own hidden agenda lol.

So Far now we are getting ready for the upcoming school year, football practices and dance run around. It definitely going to be a great Fall in the Waters house hold.

over the past few days

Well it has been some great days up here at the PCMC..

Xander graduated from the CICU on saturday afternoon and went on up to the CSU on the 3rd floor. You have NO IDEA how it felt to see our little one move from the CICU in just 4 days after spending 3.5 weeks in the CICU the first time around..

It truly amazes me on how strong these babies/kids are.

Xander is off of all of his meds (besides his normal everyday ones), all chest tubes are gone, his incision looks great and o my word he has more color to him and not just pale and blue..

Its been nice getting know more heart buddies and parents, to see how each child has a story that is similar to Xander's to not feel alone but to also help others cope along the way with their new journey. We definitely have found a new family to be apart of.

Glenn

You know it never gets easier being a heart mom or dad for that matter, but it does get more inspiring.

Xander went in for his 2nd OHS on Tuesday July 19th. The procedure that he had done this time around is called the Glenn. In basic terms they took one of the blood supplies from his head down to his PA which will allow him to get more blood supply though out his body but will give him some major pressure headaches for a few days.

He definitely looks pinker to us but he has been pretty pale for a while so its a great change to see for us..

However that afternoon after surgery Xander decided he was going to be the booger that he is and not do as the doctors and nurses wanted. They tried ti extubate him and with 30 minutes or so he was re-intubated.. This is not Xanders first rodeo of doing this i promise and the docs know this as well so they backed off and decided to just let xander as he always wishes and will let him rest for 48 hours. Yep he has mommies stubbornness and dads go with the flow.

Well our 48 hours were up today and of course Xander should much improvement so they decided he was telling them he was ready and sure enough out it came and he help his oxygen, he does need some high flow still but only because his right lung had collapsed during the first extubation but he is quickly coming off of that too and should be on regular oxygen by morning.

I must say that this surgery has so far been the easiest on me as mom. I did not have the worries as i did with the first, he is not has sedated as he was with the first. he was moving around with in 48 hours and smiling and cranky ( yep loved to hear him cry). This surgery has seriously helped me see and believe that life with the Glenn is going to be totally different and a lot better.

We have got to meet so many heart buddies this time around. We got to meet Nicole & Kyler (fontan), Abby and Michelle ( heart transplant), Amy and Abby ( fontan), Asher ( fontan), Have not been able to meet with Carman and Xander yet but will soon. It is so nice to have others around that are going through what we are and be able to talk to them and know that they know all of the feelings and not have to feel like we are the only ones.