Thursday, July 19, 2012

Giving back on Xander's 1 year anniversary of his second open heart surgery.

Today, July 19th marks Xander's one year anniversary of his second heart surgery. So in celebrating this milestone Nick and I gave back by donating blood. What better way to celebrate the gift of life.

I'd be lying if I said I wasn't at all emotional this week over this, because truth be told it doesn't matter how long it's been it's still hard to think of it all and remembering all of the emotions that were there that day. What can I say he's turned me into a blubbering softy.

We said goodbye to our OT the other week. Xander is now up to speed and is walking everywhere, heaven help me!

Remember this, when faced with challenges always remember that god is right there to lean on, never feel you are alone!

Oh and by the way, for those of you that know my husband know that this man is AFRAID of needles like no other. I have to admit I am super proud of him by swallowing that fear and having that needle stuck in his arm to give blood today for his first time!! Such a trooper!!

Monday, June 4, 2012

16 months!

O my goodness where to start all all the progress we have made since our last post, so please forgive me if I repeat myself as I really did not go over the last post before writing this one.

You know how you sometimes come across a breath taking scene or even a moment and you want to capture that moment for a life time just so that you can look back on it and remember that feeling it gave you. I had a moment like this Saturday. Xander turned 16 months old, I watched him crawl around and just play his little heart out all day but it wasn't until he looked at me with his devilish little look he likes to pull right before he does something he knows he shouldn't, right then i seriously had one of those movie playback moments lol. I saw everything that he had gone through, the ups and the downs, the tears and the laughter through out the first 16 months of life and it made me smile to just think of how AMAZINGLY strong my little warrior is and how determined he is to be here with us.

Its moments like those that really take your breath away, and remind you what you should really be thankful for in life. Its taken along time for me to realize what is and is not important and a lot would say that family is the most important in life and as I would agree on this I don't 100% only because not all family is grand, but I do know that our little family means the WORLD to me and I will never take it for granted again, but what I realize is the most important is LIFE and how we live it, Xander is the biggest teacher on LIFE and what can be accomplished when you have the will.

Xander is walking around with the couch ( please someone knock him down if you ever actually see him walking with out the couch ;) It's great to see him move around so quickly as he does but momma just is not ready for him to do it on his own. He is 100% feeding himself these days and LOVES everything you  give him to eat and yes even crayons ( thanks to his older brother Anthani).

As the months continue to keep flying past us we are determined to make this summer the best one we have had in a LONG time. We were not able to do much last year since Xander had gone in for his Glenn procedure in July. So it will be lots of fishing, swimming, camping and new family traditions being made for life time of memories.

O and before I forget Xander has become a very opinionated little booger ( like we did not see that coming right.) He does not like it when you tell him no-no ( like any other kid of course) but the face he pulls with it makes you laugh. When one of his siblings is being reprimanded he has to put his 2 cents in at the end.

August will be his next cardi visit but I am sure everything will be just fine and I am sure I will worry as always 3 days before but hey I am the mom so I can!

Enjoy your summer everyone because this Waters Family is going to have a BLAST!

Wednesday, April 4, 2012

14 months

14 months! 14 months of ups and downs, laughter and tears, but 14 months of smiles, trials and experiences I'll never give back!

Xander amazes us everyday and yes I know I say that so much but really it's the truth. My cousin put it in such away that it really hit me, the words she spoke. " when you look at someone you can just see their meaning, the glow of sadness, happiness, wisdom etc. but when I look at Xander Sharrell, I see meaning. The glow about him just escapes him and takes your breath away, it's truly amazing".

After she stated this I literally looked at Xander and just stared at him. I watched his every move and finally he looked at me and just smiled and right at that very moment there it was, the glow and meaning that just surrounds his body in everyway. His blue eyes just shimmer at you and you can't help but just smile at him.

My family is extremely blessed to have him in our lives and be able to experience everything with him.

We have become such an advocate for him in our own little ways and yes some still don't get why we do the things we do for him or why we get so irritated or "blow things out of proportion" when others really should no better.

We do these things because we love him and want to help build him to be strong enough to move on.

We know we can't protect him from everything but we do what we can .

Some will never truly understand what it's like and will hold judgement and that's ok because they don't fully understand.

We have been given a gift and that gift is a wonderful, beautiful boy who is our warrior in so many ways!

Tuesday, February 28, 2012

Lasix is back!

Over these last few days Xander has been having a few struggles. With cardi taking him off of his lasix and oxygen we started noticing that he was coughing more, throwing up, breathing faster, he was just do uncomfortable that he did not even want to lay down or even sleep.

Last night came the overwhelming feeling that we would be taking up residency at the big house on the hill . I was NOT about to have that happen so with that overwhelming feeling came the mom instinct loud and clear, I has to give him his lasix, he needed that. Everything that was happening made me know that it was fluid he was retaining.

3-4 hours later after taking it he was able to calm and relax enough to fall asleep and not cough.

His pedi brought us in immediately this morning once going over everything and sure enough Xander was retaining fluids and fast. Gaining 1 pound 14 oz in 4 days would be great news if it weren't all fluid.

His oxygen level due to all of this has gone from 84 to 72. Needless to say Xander will be getting his lasix for a while and next time we aren't going off of it cold turkey but will wean instead!

Thursday, February 16, 2012

O how things can change in just 1 year.

Can I just say "What was I thinking" 7:30 am cardi appointment meaning 5:30 wake up time and out the door by 6:30 to get there on time. Well I was thinking of all the icky germs that we would be walking into, so being first see sounded awesome to me lol.

First I have to RAVE about the NEW riverton hospital and the primary's children area they have there, totally amazing, instead of it taking usually 2-3 hours up at the big house on the hill it was only 1 hour (thank you god) AND It truly felt like WE were the only ones there!!! LOVE IT!!

Xander's 5 month check up went AWESOME. Of course Xander forgot to check his grumpiness at the door but we made it through it. He would be fine and all happy UNTIL someone came at him with a medical equipment ( really can you blame the poor kid lol) but with the attitude he was giving we got what we needed to and that's all that mattered.

Dr P & Dr Miller are thrilled at how well he is doing, they love that he is actually gaining the weight with out being tube fed. His X-ray showed that all is great and they took him off his lasix med ( YAY 1 less med to have to give each day!) His EKG and ECHO showed that his valve leaks but nothing to even worry about as its such a little amount.

We were told that Xander can now be off oxygen completely but to still monitor his sats. and give back when needed and we don't go back for another 6 months woohoo!!

Today was a GREAT clinic day and it's such a major change from 1 year ago this month, it's truly AMAZING to see how far he has come and what he has overcame! Never underestimate what your little ones can do!!

Thursday, February 2, 2012

Happy 1st birthday Xander

"In a matter of minutes your life can change forever. To never go back to where it once was and quickly thrust down an unknown path. Your life as you once knew it comes to a screeching halt as the rest of the world carries on around you. Hospitals become your new home, clinic visits your new vacation destination, nurses and doctors your new family. Tube feedings, administering medications, pulse oximeters, things that most would find terrifying soon become a way of life for you."

I couldn't have said the above statement made by another heart mom better myself!

16 hours after Xander was born that above statement became true 1 year ago today.

The nurses huddled around my baby, life flight taking him away, arriving at PCMC to find out what's going on, being brought into a consultation room, delicately given the news, hearing the Charlie brown teachers voice after they said heart, crying with my husband uncontrollably, seeing my father in law cry (first time) will forever be imprinted into my memory.

Your body tends to shut down and you then start walking in a fog, focusing only on that one area of life for a period of time. You gather all of this strength you NEVER knew you had and it stays with you forever. You look at life in a WHOLE different light and continue to as the days go by. We may have not been as prepared as some heart parents were before giving birth, but we definitely became just as strong as they did.

Xander has touched so many lives and has put so many smiles on so many faces during his 1st year here with us that he will forever be apart of them in some way or another.

We have witnessed a HUGE miracle and that miracle crawls around all over our home, getting into cabinets, pulling out all the Tupperware, lids to pots and pans, playing in the dogs water, and shutting himself into the bathroom.

He may have to rest to catch more energy but this now 1 year old will not let it hold him back. He has learned how to eat on his own, feed himself on his own, crawl on his own, & now learning that he can stand on his own. He has blown both of his doctors away on his ability of moving forward.

He may not be the fat baby Nick and I are so used to having, now weighing in at 15 pounds 1.2oz and 27 inches long as of today, but we already know he does things in his own timing.

Our first year with him has been a definite up hill battle but I would not change or give back the lessons we have learned, the new family we have become or the heart buddies and families we have met along our journey for anything.

I am proud to have the title of "Heart Mom" and I am proud that my heart warrior chose us as his family!

Happy 1st birthday Xander you're truly our hero!

Friday, January 20, 2012

Looking back

We always try to find the answer on why things happen or why did I not see this when things happen to us. I myself have been thinking this to myself for the last year but recently it has been even more so.

While gathering pictures of Xander to be put into a project my dear cousin is helping me on I came across the pictures of the day he was born and in those pictures right there i should have followed my gut instinct and spoke up. Xander in these pictures looks so purple and blue and seeing them having to use an oxygen bag on him just to get him to breathe right should have been an even bigger clue there was something not right, but i really just let it slide thinking that maybe this is what a full term baby looks like ( have never had actual full term babies before). Just going over these pictures seriously put me in a funk and the blame game started all over again.

As I continued to do this it finally (yet again) hit me that there was no way i could have prevented anything if i had actually said something was wrong, what was about to be was always going to be what it was there is no way i could ever change that. He came to us with half a heart for a reason. He loved god so much that he just could not leave him fully so he left half of his heart with him and came to us as a special blessing.

Xander is an amazing child to say the least and with every trial that has come his way he has proven that nothing will hold him back ( he gets that from his daddy i say) his little body can only handle so much but man when that boy is determined to get that toy at the other end of the living room he will force all of the energy with in him to make it to it with out having to stop and rest.

We were told that he may not be here long but really do any of us know how long we will be here? The only one that can determine our time length is the one who sent us here.