Sunday, April 24, 2011

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.

Monday, April 11, 2011

A lot going on

Well a lot has gone on since the last time I was able to update on here so here we go. Xander is still in the hospital but is starting to get better day by day. This virus and the bacterial flu that contracted really has done a number on his poor little body, but he is a fighter and will continue to fight, but in the mean time nick and i are getting our new home in to order so that when he is ready to come home everything is in its place and clean for him. Xander was extubated on Friday of last week and has been doing well with not having it in, he does still breath pretty fast at times but the high flow they have him on (5 liters) i holding him steady, they are going to ween him slowly, he is also going through some narcotic withdrawals right now so is pretty cranky but its ok its just one more step closer to getting him out of the ICU. He is now 8 pounds YAY he is actually starting to gain weight and this time we can actually say it is him and not fluid that he is holding in. I am so ready to have him home so that our family can be complete again, the kids are having a hard time with him being gone since it will be 3 weeks since they have seen him, but i make sure that i take lots of pictures for them so that they can see how he is doing.
Pure love

Saturday, April 2, 2011

Xander is 2 months today!!

Our baby X is 2 months today. We are happy and sad all at the same time about this. Happy because we still have him here with us and sad because we have only got to have him home 20 days out of the 60 days, but those 20 days were wonderful, and the rest from here on out will be just as great.  Now on to his progress. Xander is doing MUCH better today, since he was int abated again his stats have gone back up they have him on some high settings as of right now but decided that after what they did yesterday to him they were going to leave all things alone for a couple of days and let him do things as he would like ( ok people i have been saying that to you for how many days?) Anyways I received a call from his cardi doctor today, he had just gotten back from being out of town for a week and saw that Xander was still there and went to get a report on what had happened over that week, needless to say he was not the happiest with some people and has definitely made me feel much calmer now knowing that he back and has taken control of things. I advised him that i was told that they may want to do a BRONC come Monday i he has not made any progress. His doctor squished that one right away which i absolutely love. He stated that we will do that if by next weekend we are not improving but he stated that after going over everything this past week and Xander being blessed with 2 nasty viruses that he is fighting off he is doing very well with getting better and that he is right on track of getting better, he as so have i stated to the other doctors that he is not going to be a 1 week case and then be better, instead Xander could be a 3 week case. All i know is that i happy that he is back. I was beating myself up pretty bad last night and this morning for not saying NO when i that voice telling me to, but i got a text this afternoon telling me that I was not allowed to beat myself up over this and that we always get a freebie to allow ourselves to see what we need to do in those situations. They also wrote that i could not dwell on what could have happened cause it will only cause me more hurt. Those texts helped me more than anything today, just reading those, knowing that this special person knew me so well that they felt they needed to tell me DON'T YOU DARE beat yourself up about this made me calm, made me realize that they are right i am only human and i have other obstacles that will come down this road that i will now not overlook that feeling, last night was my freebie and ye i learned from it. I want this person to know that I love them and thank you for being there and saying what you did you may never really understand how that helped SO much today! We will move on from here and keeping moving on as Xander continues to teach me about his beautiful message he was sent her to give us.

Friday, April 1, 2011


Have you ever had a moment in your day that you just knew you should have said what you wanted to say but yet did not and just went with what the other person was saying or what ever it may be that was going on at that time? Well I had one of those moments today and it was something I should have listened to and not kept my mouth shut this time around. Let me explain; Today I was told by Xanders nurse that they would be ext abating him since he was having "such a good day " and that he did well on his ONE spontaneous room air test for 30 minutes, this is when i got this feeling telling me NO don't do that he's not ready for that ventilator to come out yet, but as i was getting ready to say something i was then told by the nurse that the attending doctor was impressed with how his #'s were and felt that it was a good time. This was not a NEW doc so she knew his sensitive case and everything. So needless to say i pushed that feeling away but yet it never went away. At 7:30pm I received a call from Doctor Shattler ( one that has been with xander since we came in last Thursday and who has also seen him in the CICU area), of course my heart dropped, its always been the nurses who called NEVER a doctor. She stated to me that she was just coming on for the night and was pulled in to my room by night nurse ( MINDY) who as well had just gotten there. She advised me that we were going to lose Xander if we did not int abate him again so of course i went in to tears and said get it done NOW. Once everything calmed and he was int abated once more she called me to go over why this had happened. When Mindy came on she noticed that Xander was struggling to breath. He was breathing 101 times a minute he was becoming lethargic he was sweating and he was losing color, instead of getting a report from the day nurse she pulled Doctor Shattler in and that is when everything went into action. I knew i should have spoken up I knew that he was not ready but yet i did not say anything. I am Extremely upset about all of this and very upset with the day doctor for pushing him so fast. As of late tonight Xander is now stable and is doing better, his color is back and he not so lethargic. I have been advised by Doctor Shattler that she will be the one to discuss with the doctors on how many sponatious tests need to be done before we extabat again. I could have lost my baby tonight but because i have an awesome and alert nurse and a fast acting doctor, he is still here healing and waiting to come back home with us, but to everyone when you have that feeling that something needs to be said, SAY IT, don't worry about what may be thought or said  or done after saying it just SAY IT, cause you never know what may happen if you don't.