Saturday, June 25, 2011

Everything is as it should be!

So excited to say that as of June 13th Xander hit is 1 month mark of being home YAY!!! I can not even begin to tell you how it feels to have finally had him home for such a long period of time!!! Xander is doing really well with all that is going on with him, his surgery is still planned for July but we still do not have a date yet. However we were told that we could take Xander out for his first outing, so what better way to celebrate by going to a birthday party for my cousins little man Jace. The kids were so excited to see each other since it has really been over 3 years since they had done anything together. It was a great family first outing with Xander i must say!

As this month of June comes to an end i am starting to get anxious to have the surgery but only to get out of the Norwood stage, it definitely has been a very rocky one for us, i am not ready to see him hooked up to monitors or having tubes coming out of him again, but i know it is what needs to be done & i know that from here thinds will only start to get better for him!

Monday, June 6, 2011

Our day at PCMC

Well today was Xanders cardi appointment and it was a very long one at that, but from what I have heard spending 4.5 hours up at PCMC is a normal day on appointment day.  I have to admit that i did not sleep very well last night, i think all worst case scenarios went through my head which really did not help the nerves.

Xander was such a good little man while he was having his ECO done he just laid there  watching the girl and looking at the monitor of his heart, he would occasionally smile at the cute tech and she would tell him how handsome he was which made him smile even more ( such a flirt he is)

After his cardi doc reviewed his ECO we sat down and went over our next steps.  As of right now his main concerns with Xander is that he is sweating more and that he is now irritable and has noticed that if he is held up right that he is no longer fussy but once laid down he starts to cry instantly ( now of course most babies its because they are spoiled and want to be held all the time which could be his case but his doc stated that its not that way with him this time due to the ECO results)  The Eco showed that his heart is starting to ware and with each pump it does it stresses and makes more pressure with in his chest making him uncomfortable.

So to help with with the stress of the heart they have now put him on Enalapril which will help with the stressful pumping of the heart and relax it more which will give us more time to get him back up to the 10 pound mark for surgery. They have also uped his dosage per hour to help with weight gain. 

The process for his heart surgery has now been started and will be happening some time in July.  He will first need to go in a week prior to surgery to have a heart cath done ( to make sure all presure in areas are well enough to proceed)  and then he will have a sedated ECO done. 

July is just around the corner and to be honest is scares me knowing i will once again be handing off my baby X to his surgeon and waiting for updates as the surgery goes on and having my heart up in my throat each time they come in or call with an update.  I know that he is in the best hands possible but this momma just wants him in her hands. Xander will continue with his journey and will fight what ever comes his way.

Friday, June 3, 2011

Getting ready

I know that it has been a while since I have updated you all so I do apologize. I am happy to say that Xander has been home as of today for 3 weeks. This is the longest amount of time we have had him home since he was born,it has been so nice as well. We have only been up to primary's once and that was only due to his NJ Tube coming out and needing to be placed back in, it was definitely a different feeling going in with him and actually leaving with him that same night..

Xander is now 4 months old as of the 2nd, its a sad period knowing that he is getting older but its also an anxious period as well. With Xander being 4 months now just means that the 2nd surgery is coming but it may be coming sooner that we anticipated.

Xander is back on his oxygen full time. We started at .12 and we are now at .25 oxygen help, He has started to become irritable and at times forgets to breathe which then throws him into a panic let alone mom. His hands are paler and finger nails are a bit bluer. These are all of our signs that we are told to watch for as he grows so that we can advise doctors of the changes. He also has lost weight. He had been gaining pretty well but just this last week he has started to decline, as of today he weighed in at 9 pounds 11 oz. He had been 10 pounds.

I advised his cardi doc of all of the new changes that we are noticing and instead of having our cardi appointment on June 15th he has moved us up to this Monday June 6th.  We were advised that he is going in the CHF (congestional heart failure) phase and that if we need to move oxygen up past the .25 we are to come in.

I have tried my hardest to prepare myself for all of this and for his next heart surgery but to actually see that it is right here soon scares the crud out of me. I know that Xander will forever beat what is thrown his way and will forever teach our family about being strong.  I will update on Monday when all is said and done.