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!

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!

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!!

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!

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.

Update in the new year!

Well it's 2012, wow how 2011 flew by. I'm sure it's because during the majority of it I was in a walking fog, but 2011 definitely taught me many things about myself especially but also about my family!

I'm noticing as the weeks get closer to Xander's birthday my emotions are high. Just visiting the OBGYN and seeing all of these beautiful pregnant woman brings you back to where it was that happy period, you know the last few weeks of being pregnant counting down those days til you no longer have to share what little space you now have in your body and knowing your healthy baby will be in your arms soon.

Now you look at every pregnant woman wondering to yourself, "do they know there could be something wrong even though they have been told everything looks great"? Yep I have those thoughts and it's pretty normal to have them as well.

On a Xander update: he is crawling and exploring ALL over the house!!! It takes a lot out of him but he will rest in between each crawl until he gets to where he wants or what he's going after!

He will officially be off tube feeding for a month on the 14th!! I was SOOO excited to send that dang food pump back!!

Now if only I could get the oxygen stuff to go away, but that will come with time!

Christmas 2011

Christmas has come and gone, but I have to admit that this Christmas was even more special than any of the years before.

Xander had his first taste of Christmas this year and he had a blast with all the commotion and all the presents, but I think he loved trying to eat the wrapping paper the most.

Christmas eve Xander got to meet his great grandma and grandpa Larson for the first time and he also got to meet his great great grandma Bly, watching them cuddle him brought tears of joy to my eyes. I'm so happy that they were able to have him near them for that night and to be able to see him as a "normal" baby and not one with tubes all over him or going inside of him as most of us have.

Xander continues to grow stronger as the days come and go and he continues to amaze us as time goes on. In just 5 more weeks we will be celebrating his 1st birthday what an amazing date to look forward to as of right now!