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!

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.

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.

Home once more

Well our little Xander has made it home once more from PCMC. Xander came home on Friday 5/13/2011. Usually you seem to have bad days on Friday the 13th's but i definitely have to say that this one was a very blissful day!

Now that we have cleared the hurtle of the NEC ( necrotizing enterocolitis) we still need to watch for it as it can come back very easily since he has now had problems with it, but i caught it at the beginning of it the 1st time and i will catch it again.

Xander turned 3 months on 5/2/2011 and once more we celebrated it in PCMC but what better place to celebrate life than up there right. Mothers day came and my only wish was to have all of my kids together in the same room that day so off we went to spend it up in Xanders room, its a day i will never forget and will always hold dear to my heart.

Life is starting to get back to normal now that we have Xander home.

The only new news i have on Xander is when he came home he was sent home to be on his oxygen 24/7 again, with only having it fully gone for 3 weeks. Xander is having some trouble keeping his stats in the 75-85 area and his lasix has now gone up which both of these are starter signs that the 2nd heart surgery is just around the corner.  He is starting to sweat a bit more but color is still good and we have not had to up his air rate of .12 any higher.

We have his first actual Cardi appointment on June 15th and from there we will discuss when to do his surgery, but my gut instinct tells me we will be doing it late June early July area, but until them we will enjoy the days home with him and get him all strong and ready for that day!

Getting closer to coming home again..

It will be 2 weeks this Saturday that Xander has been back in the hospital after only getting out on the 16th of April and was home for a week, But i am happy to report that his NEC has subsided and we are doing great. As of Monday they took him to have a swallow test done and unfortunately he failed on the thin but passed on his thickness, so they replaced his NJ tube after 10 days of not being able to have food while his intestines rested.

Now for today our little Xander decided he was going to be a naughty little man and pull that NJ tube right out, so that the speech therapist could not come in and make him eat from a bottle with thick nectar to see if we would be able to just go to a NG tube instead, but nope Xander wanted it his way...

I am so happy that we caught his NEC early and are not going to have to do the surgery. I am ready again to have him home but this time i would like him to stay home since on Monday 5/2/2011 he turned 3 months and that only gives us up to 3 months at the longest before his next heart surgery and I want to be able to hold and play with him as much as i can before all of that.

But for now i will let him enjoy the spoiling he is getting up there by all the nurses just as long as he agrees that once he gets home he's home for a bit lol

Moving on up

I woke up this morning knowing that it was going to be a very serial day, but actually it turned out to be a very nice,PICU this afternoon peaceful day.

Xander was moved out of the PICU this afternoon. We were told that we caught his NEC as it was starting and that it seems that the antibiotics that they have him on are doing the job they need it to do. HUGE RELIEF.

Although we are now upstairs we may still be there a few more days and even weeks it all depends to be honest. right now the plan is to keep all feeds away for a few days, place a PICC line and then give back feeds little by little just to see how his intestines will handle it.

Once everything looks the way they want it to and need it to we will be able to go home once more. i am so happy to hear them tell me that there will be no need for surgery since all the X-rays  they have done in the last 24 hours are showing that the meds indeed are doing what they hoped they would.

Xander once again is showing how much of a fighter he is and will be for the rest of his life. I keep telling myself as things happen each time that it is up to him not me he is the one that has the fight with in him and will do what he feels is right.

Here we go again.

Its amazing how life can change so quickly.One minute everything can be getting back to normal and calming a bit and then in a blink of an eye it can all change.

Xander came home on 4/16/11 from overcoming his RSV and HIB FLU, it was a very exciting day for us, our little X was coming home after 3 long weeks without him home. The week he was home was great. There was a nice calmness in the home and within all of us ( even with the other kids), but with in the one week he was home that calmness has now been deleted.

On 4/23/11 ( day before Easter) Xander woke up with some blood him his stool. I wanted to make sure it was actual blood in his stool and not from the nasty diaper rash he has right now from all of his meds he is on. So with the next diaper change i saw that there was even more blood and it was a bit brighter. I called his doc and he met me at his office.

He tested the stool to make sure it was actual blood ( which it was) and then looked in his diaper to see if he had, had another stool output, which he had and again this one was brighter and had even more blood, so it was off to primarys we were sent.

Xander had 3 X-rays done and an ECO as well. His cardi doc just so happened to be the on call Cardi doc for the weekend so that was very nice and easy for me. Once all X-rays and ECO results were in i had 3 doctors come in my ER room ( never a good sign i have found out over these last few months)

I was told that his ECO looks great but what they saw in his X-ray was something they were hoping they would not see. Xander has Necrotizing Enterocolitis.

Necrotizing enterocolitis is an infection and inflammation of the intestine that is seen within the first two weeks to three months after birth, most commonly in babies born prematurely. The disease may occur when the immune and digestive systems are not properly formed. Symptoms may include a swollen, shiny belly, bloody stools, fast heartbeat, and vomiting. Treatment includes intravenous feeding in a hospital neonatal intensive care unit, antibiotics, and possibly surgery to remove damaged parts of the intestine.

As of right now Xander is back in PICU at PCMC and is being observed, we are on antibiotics and are having x-rays done every 6 hours to see if there is any change good or bad. We are hoping that the antibiotics re working if not we more than likely will be having surgery to cut the damaged area out of the intestine. He could be there for 2 weeks  or he may be there for a month it all depends on what direction everything decided to go.

Just remember that life can turn in any direction in any minute of any day and don't take things for granted in any way, i know we don't anymore.  Even though Xander will not be able to be with us on Easter that is not going to stop us from having an Easter egg hunt with him. Easter eggs will be hiding in his room to find.