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!