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!

Getting so big!

So just a short update on Xander.

Tuesday night (12/13) he decided he was not going to keep his NG tube in what so ever it did not matter what we did he was not going to happen.

Well the next morning ( which so happened to be my birthday) I gave him a bottle and he took it like he had be drinking it forever!!

He's doing pretty awesome at having a bottle and I'm so happy that I have not had to deal with the dumb NG tube for the last 5 days!!

Xander has started to do the army crawl but I caught him on all fours this afternoon which made me smile and cry. He's development has come so FAR in the last 2 months that really we were not expecting him to start being mobile until he was 1 so to see him prove them wrong again is WONDERFUL!!

I want to wish everyone a VERY MERRY CHRISTMAS and remember the true meaning of Christmas!

10 months WOW!

WOW 10 months really?

Have you ever just looked at one of your kids in such away that it brings tears to your eyes? I have with all of my kids but today as Xander smiled his HUGE smile he does ever morning i just got teary eyed. I just stood there looking at him and brushing his little hairs away from his eyes and just smiled with tear filled eyes. Once taking him out of of his crib a squeezed him a little bit harder than usually. and kissed him all over making him laugh.

Xander is 10 months today, it has been 10 months of learning, waiting, crying, and worrying, and 2nd guessing yourself as well, but really its no different than any other mothers normal worry, yea us heart moms may have more meds to give out more doctor appointments to schedule more techniques to try on getting them to gain weight or even more techniques on getting them to be healthy, but really no matter what anyone's situation is healthy or non all moms have their worries.

I was in the store the other day getting baby stuff of course ( gotta get those pounds on him lol) as i was checking out the lady asked me how old my baby was that i was buying for a replied " he will be 10 months in 2 days" at that moment it hit me "oh my gosh Xander has over come the odds that were given to him" and immediately my eyes started to fill AGAIN (for one that hates to show emotions really, Xander definitely has turned me into the biggest WEEPER lol) The poor clerk just looked at me and asked if i was ok, i stated yes just tears of joy, she asked why so i simply told her Xanders story.

Of course once all was said and done the lady had tears too, but she told me that she was sorry that i had to go through all of this and that he had to as well, i stated I'm not sorry and nether should you, life is about teaching us things and loving things that we never thought was possible and showing us the strenght that is inside of us at all times but only comes out when we truly need it because we tell ourselves we are not strong, life is about treasuring the things that really matter most in life and Xander taught our little family that we can survive ALL.

So as well know the holidays are here, thanksgiving for us this year was pretty different for us but not in a bad way. We stayed home due to Xander getting sick the day before and i made my very first thanksgiving dinner all on my own it was AWESOME to say the least, but it was very memorable as well. It was just us for a change and in a way very peaceful, of course we missed the family, but it was just nice to sit home and celebrate with just us.




Now Christmas is right around the corner and i can not wait to see what this little man does with all of the presents around the tree. He already likes to get under the tree and play with the little ornaments that are close enough for him to touch lol.

This holiday season is different for me in so many ways. We have living proof that true miracles really do happen and i have 1 very inspirational miracle that i get to hold each day along with 4 others that amaze me more and more as the days come and go!

Our adventure!

Happy Halloween!! I love this holiday, seeing all the cute little witches, vampires, and ghosts walking around. This is Xanders 1st Halloween, but will be inside tonight helping mommy hand out the candy to all the goblins and staying warm!

We've had some big adventures these last few days. Last week on Thursday Xanders NG tube was bugging him tremendously, I decided that I was not going to retape the tube down if it started to come up. As the day went on he kept pulling at the tape and was making that tube come out more and more to where it was starting to bug me, so finally I had enough of it and pulled the tube out, knowing that Xander would ether need to start taking that bottle or I would have to put it back in. Ether way I was willing to do whatever I had to.

Xander took 2oz of his bottle that night before bed and had half of his pear baby food.

Friday he woke up and wanted nothing to do with the bottle (frustration for me) he would how ever eat baby food so I stuck with that. Aunty Libby came with rice cereal, baby crackers and baby puffs ( she's pretty excited about all of this like nick & I) Xander LOVES the rice cereal.

Xander that day still wanted nothing to do with the bottle and I knew that he HAD to have is formula in order to get all of the calories he needs and to stay hydrated.

Friday night he took another 2oz before bed, still not enough of what he needs. Saturday we all packed up and headed to dylans football game.

Our cute 13 year old neighbor also babysitter snatched Xander up as soon as she arrived. She and Xander have a special connection and he smiles so much when she is around. She took his bottle and wouldn't you know it the little booger ate all 4oz's of his bottle for her!!

As the day went on Xander would have some bottle but not big amounts. We decided to get him some pedialite just to keep him hydrated. Of course he loves that and ate that without a fuss. Obviously he has a sweet tooth!

During the night Saturday he finally became so hunger that he ate 8oz's of his formula ( thank you god), but of course the next day all he would want is his baby food.

I have to admit that it's very frustrating knowing that he HAS to have his formula to help with the HIGH calorie diet he is on but will not always take it, but it's a learning process and I will stick to it until he gets it.

I think for now Xander will be tubeless during the day and I will place his NG tube in each night just to help make up for calories he lacks through out the day!

O how the year has flown!

It's so crazy on how fast 2011 has gone, it really feels like just yesterday it was February and here we are now in October 14 days away from Halloween.

Sooo not ready for the winter and the sicknesses that we will be avoiding. I wish there was a fast forward button at times and I would only use it during the cold months where it seems everyone is ALWAYS getting sick!

Well Xander as of October 2nd is now 8 months and is still weighing in at 11 pounds 14 oz. I think he may have a complex on gaining weight lol. He is doing so great after his Glenn and you can really tell the difference in him too!

We have been working with a therapist that comes in twice a month and helps with his mobility and feeding. Xander has shown no interest in a bottle what so ever so we have passed that and have gone straight to a tippy cup which he loves.. Our goal as of right now is to have his NG tube out by thanksgiving!!!

He has cut two teeth in the last week making him super cranky and has decided that sleep is not necessary at night ( huh maybe not for him but sure is for me lol) so now we get to experiment with essential oils to help calm him more at night and relax Jim just a bit more ( hmmm can't imagine on why he may be tense lol).

Holidays are coming up and things will be really different with them and what we are used to but it's all for a good reason. We must make sacrifices when others feel they do not.

Xander will not need to go back to his cardi doc until he is 1, so in other words PCMC we love you dearly but we better not see you until February!!

A SHOT IN THE ARM FOR XANDER!

I stole this from one of our heart buddies blog and its exactly what we want to say and feel! Thank You Mollie for reading my mind!

Well the flu season is among us....BOO!!! While some of you might find this "overboard" or "harsh" to us it is not. To us I would explain it maybe as harsh reality. For Xander's safety we are advising that if you plan on being around him AT ALL that you will get your flu shot. There is the assumption that if you get the flu shot you will get the flu, well guess what that is false. This is straight off of the CDC's website:

The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:

•Soreness, redness, or swelling where the shot was given
•Fever (low grade)
•Aches
•Nausea
If these problems occur, they begin soon after the shot and usually last 1 to 2 days. Almost all people who receive influenza vaccine have no serious problems from it.

The flu would be life threatening to Xander, and it wouldn't be a question of "he might be admitted" to the hospital if he got it, it is a guarantee that he would be admitted and it would be to the ICU, I don't think YOU would want to be the cause of that, would you?

Because of the risks if you don't have your flu shot you won't be allowed at our house this winter that may seem rude but I'd rather seem rude and avoid the hospital this winter than hold my feelings in and be at the hospital away from KayLynn, Dylan, Trever, Anthani and Nick for weeks because Xander caught the flu. Also if we do decide to attend family events such as Thanksgiving, Christmas Eve, Christmas, or New Years Eve parties outside of our house and we bring Xander, if you plan on holding him or getting close to him we will be asking if you got your flu shot and if you didn't you will just have to wait until the summer to cuddle with him. The more people who get the flu shot the less people who get the flu, crazy concept right? So really it isn't only for Xander's protection but for your own family's also. I know a lot of you have kids and babies in your homes so do it for them also! So come on all the cool kids are doing it and get a

SHOT IN THE ARM FOR Xander!! ♥

Best anniversary present EVER!!!

So I just have to say that today has been the most AMAZING day ever..

Xander had his post-op visit up at PCMC this morning and it also is mine and Nicks 10 year anniversary! We arrived at PCMC at 10:30am and started the visit out with a chest x-ray. we then headed over to cardiology to check in. Once in the room they had us turn off his oxygen to test how he would do on holding his oxygen up. Unfortunately Xander can only keep his sats in the 78-80 area which really they would like him to be at least 80-85 if not 90 area, so we will be staying on .25 oxygen for a bit longer but hey we have SOOOOOO come accustom to it that really we don't even notice it anymore. His EKG came back wonderfully and his chest x-ray showed no fluid anywhere YAY!!!!! Of course there is always that chance that some could come at a later time but we know the signs to watch for and know what to do if we feel things are going down that route. Needless to say Xander passed his post-op visit with flying colors besides weight gain. We are still sitting at 10 pounds 3.7 oz he has not gained anything since he had left the hospital.

Next we went to have our swallow test. You know how you just get that feeling in your tummy that you know they are going to or are not going to pass? Well I had that feeling today but that he would pass this time around and Drum roll please..................... he PASSED!!!!! Yep that is right our Mr. X totally passed his swallow test YAY... Now instead of having an NJ tube he now has a NG tube ( instead of going directly into the intestines it is now going in to his stomach FINALLY) I seriously can not think of a better anniversary present than that!!!

So for the next 24 hours we will be keeping his feeds at 27 calories at 27 ml and hour if after the 24 hours he has been able to tolerate it we will be moving to 27 calories at 54ml every 2 hours. Once at that dose for 48 hours we will then move to 27 calories at 90ml every 3 hours and watch him for another 24 hours to make sure all is good. If we can get to this amount and have no problems we are then able to start giving him food yes FOOD ( I am so excited about this ) by mouth.. HECK YEA!!!!

I cant even begin to tell you how ecstatic we are right now about this visit and everything, we definitely have such a fighter on our hands and we have been so blessed this far on everything he has gone through and will continue to have to go through but it just shows that no matter what he will fight to no end!!!

Now that surgery is over and we are all good life will possibly get back to normal in the normal way of what we have become accustom to YAY!!! Xander will be having his next visit on September 19th. Early learning will now be coming in each month possible each week to start working with Xander on his speech, occupational, and physical therapy so that we can get him where he should be at for his age.

Having a special need child is extremely rewarding and is very challenging at times but is these rewarding milestones that makes all the difference in the world and helps you know that what you are doing is working for your child. But really there is so much more to come and we all say BRING IT!!!

Home sweet Home!!

Xander made his way back home to us on Tuesday July 26th. That Tuesday marked the one week after surgery. I am still amazed at how we were able to bring him home just one week after all of that. Can you even imagine that being you? Think about it really, if that were an adult most of us would probably just Ly there and beg to not be touched, but when it comes to a baby, child, or teenager they seriously show all of us adults up in the recovery department. Just goes to show that these little ones mean business..

Xander came home on .25 of oxygen and his NJ tube (yay for not bringing any other tubing home lol). I have to admit that the first 2 nights home were pretty rough. Xander has to get used to all of the new blood flow going from head to heart and is still healing from the chest and tubes incisions, so he has been a bot of a pill, but now things have started to level out and he is becoming himself again.

We have our post op visit on August 10th which also happens to be nick and I's 10 year anni. Would want to spend the day any other way to be honest. Xander will also be having another swallow test done on that day. We really need to start working hard on this now that we have a 3-5 year gap before the next surgery so that he can at least get away from the tube. We were told that we would not be able to do a G-tube like most kids are able to do, due to some underlining reasons that have happened in the 5 months he has been here. It could cause some serious problems for him.

Early intervention will now be coming to our home each month to work with Xander and help get him caught up developmentally. I'm thinking it wont take long to be honest but you never know with Mr. X since he has his own hidden agenda lol.

So Far now we are getting ready for the upcoming school year, football practices and dance run around. It definitely going to be a great Fall in the Waters house hold.

over the past few days

Well it has been some great days up here at the PCMC..

Xander graduated from the CICU on saturday afternoon and went on up to the CSU on the 3rd floor. You have NO IDEA how it felt to see our little one move from the CICU in just 4 days after spending 3.5 weeks in the CICU the first time around..

It truly amazes me on how strong these babies/kids are.

Xander is off of all of his meds (besides his normal everyday ones), all chest tubes are gone, his incision looks great and o my word he has more color to him and not just pale and blue..

Its been nice getting know more heart buddies and parents, to see how each child has a story that is similar to Xander's to not feel alone but to also help others cope along the way with their new journey. We definitely have found a new family to be apart of.

Glenn

You know it never gets easier being a heart mom or dad for that matter, but it does get more inspiring.

Xander went in for his 2nd OHS on Tuesday July 19th. The procedure that he had done this time around is called the Glenn. In basic terms they took one of the blood supplies from his head down to his PA which will allow him to get more blood supply though out his body but will give him some major pressure headaches for a few days.

He definitely looks pinker to us but he has been pretty pale for a while so its a great change to see for us..

However that afternoon after surgery Xander decided he was going to be the booger that he is and not do as the doctors and nurses wanted. They tried ti extubate him and with 30 minutes or so he was re-intubated.. This is not Xanders first rodeo of doing this i promise and the docs know this as well so they backed off and decided to just let xander as he always wishes and will let him rest for 48 hours. Yep he has mommies stubbornness and dads go with the flow.

Well our 48 hours were up today and of course Xander should much improvement so they decided he was telling them he was ready and sure enough out it came and he help his oxygen, he does need some high flow still but only because his right lung had collapsed during the first extubation but he is quickly coming off of that too and should be on regular oxygen by morning.

I must say that this surgery has so far been the easiest on me as mom. I did not have the worries as i did with the first, he is not has sedated as he was with the first. he was moving around with in 48 hours and smiling and cranky ( yep loved to hear him cry). This surgery has seriously helped me see and believe that life with the Glenn is going to be totally different and a lot better.

We have got to meet so many heart buddies this time around. We got to meet Nicole & Kyler (fontan), Abby and Michelle ( heart transplant), Amy and Abby ( fontan), Asher ( fontan), Have not been able to meet with Carman and Xander yet but will soon. It is so nice to have others around that are going through what we are and be able to talk to them and know that they know all of the feelings and not have to feel like we are the only ones.

Our heart Cath

Well Xander had his heart Cath and sedated Echo done Monday morning. Have to admit that the nerves took over my body the whole weekend and the week before but it all came out alright..

Our day started at 5am and they took him back at 7am. We were given a pager and were told that they would page us once everything was done.

As you can see we were a little sleep deprived that day and obviously the starbucks was just not workin for one of us lol.


At 11am Xander was done and we were able to see him once more but not before sitting done and talking with the doctor. Xander had a rocky start when they got him sedated. His states dropped into the 40's and heart rate went extremely low as well so they helped him along with that. Once they got him into the 60's they decided they would get started since that was as high as he would go at that moment. They are not able to enter through the left leg due to getting a blood clot from his first cath he had but then found out as they were entering the right that they are no longer able to go through the right anymore which left them having to go through the neck.


The pressure in his chest is a little high but nothing to concerning. They would like to see him in the 10-12 range for pressure but he is at 15 so really nothing to serious. So since we had a rocky start that decided to keep him over night just to observe him. It took him a few hours to get his stats back up to the 75-85% area, but he got it there.

We did have a a little trouble with him coming out of all the anesthetics ( cranky as all heck ), but he calmed down eventually.

This morning during rounds his surgeon, doctor Kaza came to visit and i have to admit it is such a relief not having to remind his surgeon of his name or even ours. he knows what city we live in and he actually has a normal no medical conversation with us about how we are doing our kids etc.

once rounds were over they got us out of there and off to our home we went. Its been a pretty quiet day today and lots of loving on him we have done.. Now on to the next week with his Glenn on Tuesday so in the meantime we are going to be doing lots of kissing, playing, holding, & tickling with him before it is taken away for a few weeks. Chapter 2 of his life is going to be even greater and even more rewarding.

The time has come and the date is set!

Well the time is here. I got the phone call last week from the cardi team at PCMC to set up the Xanders surgery date. I am not sure if this happens to all but when i looked down at my phone and saw the 801-662 # my heart started pounding and my hands started to shake, I knew that this phone call was for and did not want to answer it, but knew that it was time. I wanted to cry the whole time I was on the phone with the lady but i held it together until after i hung up. A lot of emotions go through you, Happy, nervous, scared, sick to the tummy, and just plain out MAD.

That night i watched Xander sleep, i watched him breathe, watched him flutter his eyes as he was dreaming and watched the cute little smiles he would get while having these dreams and I kept thinking to myself " Does he really have to go through this again?" and the stupid "What If's." I swear if i could take his place i would in an instant. Handing your baby over to a surgeon is never the easiest but when you know it is a must its even harder. Nothing is a promise but each day is a gift and i will take those gifts everyday!!

Xander will be having his heart cath & Eco sedation on July 11th. This will be a 3-4 hour procedure but will allow them to see and know what they need to know or do to help for his surgery!

On July 19th Nick & I will be handing over Xander to his surgeon Doctor Kaza to mend Xander's heart for the 2nd time. The procedure that he will be doing this time is called the "Glenn". It will allow Xanders heart to have less pressure this time around and "should" be able to keep up with him until he is between 3-5 years of age and then at that point the next surgery will happen.

We are blessed to have Doctor Kaza as our surgeon and it helps knowing that he loves these babies to no end.

So with all of this coming up we have been told to have some family outings, so we will be spending the 4th with family and watching Xander's facial expressions as the fireworks go off and enjoying the time we have with him home until the big day, but there will be more to come after as well!!

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.

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

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.

SAY IT!

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.

More Alert today

Baby X was very alert today. He is having some good improvements  oxygen wise but now we are starting to battle other problems. This morning they weighed him and he gained a significant amount of weight, which really can not happen in just a 24 hour period especially after only upping his calorie intake by 2 calories, so we are now starting to gain to much fluid within our body so we are trying to figure out why and are needing to figure out how much we need to up his lasix now before it gets around his heart. so as of right now he looks like a plump little baby to bad that is not how it is all the time but eventually it will be. Also the blood clot in our left leg is still the same so we are looking at upping the dosage of our Lovenox as well. Xander is also starting to vomit again even with the tube down his throat, we are starting to worry that he is starting to aspirate on the acidy vomit since he does not know how to swallow properly, so tomorrow during rounds they will discuss how to handle this obstacle as well. Xander is going to be our little miracle worker and will show us all how things need to be done with him. You will not be able to push him but he will show you how he wants to do it on his own time. He is my angel in so many ways and has shown me so many things that i was blind to before, he is already a teacher and will continue to teach all of those around him as well as time goes on. it was very calming to sit and stare into his beautiful blue eyes today and talk to him like there was no one else in the room with us, I even got a few smiles too. I must have bored him though after our long hour talk and staring contest cause he then fell asleep. Tomorrow is a new day and with that brings more miracles.

Xander had a great day today. They were able to get him off of the nitric completely and have moved his oxy help level from 55% to 50%. They are hoping to get him extabated tomorrow. Each day that goes by he gets better and better, i am truly happy that we are letting him tell us how fast we can go and not letting the doctors do it as fast as they would like. I was told this morning that i would not have to give up giving him breast milk but that they would be fortifying it a bit more with another product as well. They are moving the calories from 30 to 32 now and testing it out to see if they may need to go a bit higher on it, but with him fighting off 2 viruses his body it working overtime and is burning so much that we just can not keep up so hopefully we can get it all worked out the way we need it to and he will begin to gain weight.

Nurse, Doctors, & Xander!!

Last night Xander had one of our FAVORITE nurses miss Mindy, As crazy as it may sound i seriously feel so much at peace when i know it is Mindy that Xander has as a nurse. Anyways Mindy called me bright and early this morning just to tell me that Xanders ambi cord finally fell off lol ( see they had to put what are called RA lines through that when he was life flighted and because of that it kept it moist enough to not fall off until now) well at that point i had asked her if she had saved it for me which then her voice changed and said no. I have saved all of the others when they have fallen off so that i could put it in their scrapbook (gross to some by special to others). LOL she immediately got off the phone with me and then 15 minutes later called back and  yelled "THE AMBI CORD HAS BEEN FOUND & SAVED... I REPEAT THE AMBI CORD HAS BEEN FOUND & SAVED." Miss Mindy had gone through the trash in the room to just to save it for me. This lady will do anything for her patients i swear!! Mindy then advised me that after the little tiff i put up and that she as well put up with the doctors in the PICU, I have gotten the  cardi nurses to now take care of my baby X instead of the PICU nurses. Xander needs these cardi nurses since they know EXACTLY what can be done and what can not be done to him that really the PICU nurses do not since he is such a special case. I also got my way on having a cadi doc do rounds in his room each morning as well to hear what the other docs have planned for him that day and to approve of it as well. I am Xanders voice right now and i am not afraid to express it ether. During rounds this morning they had discussed bringing his nitric down to 5 from 10. They did this at 11. Once doing that it made his stats go to 73 so we are going to stay at 5 for  until he brings that number up on his own per cardi doctors order. Xander is fighting not only 1 virus but 2 so it is going to take some time to get back up there and there is  no need to push him any faster than he can go right now. Now the other news we got today is not the greatest but its  something that we can fix eventually. Xander is still not gaining any weight with the new change of food calorie intake. He is now past his birth weight by 3 oz so from the sounds of it we may be going up to a 40 calorie diet instead of the 30 we were just moved to, that will be decided here shortly. Other than that we are moving along and making good progress and now we let him move at his own pace. He will decided when it is time and no one else!

Setteling Down

Its been a relaxing day for Mr.X today. He has decided to fight back on this virus and is winning the battle. Today was to be our long all day appointments with his cardiology doctor and other labs but instead Xander stayed in his bed and rested so that he can come home soon. We found out yesterday that Xander not only had RSV but he also contracted HIB. HIB is a bacterial flu that you are immunized for with the first round of immunizations when 2 weeks to 2 months old, but see with Xander having his heart surgery we have not been able to get him immunized and really are not allowed to until the beginning of April which would be this Friday. HIB is a very dangerous flu and can cause very many problems and give you many different diseases as well. One of those would be spinal menagitis. However we feel that we started treating early enough that we will be ok since it has not gone into the blood stream. As of now we are starting to ween him from his nitric and then we will work on his oxygen levels but as of right now we are at 50% oxygen. Each day he will continue to fight those ugly viruses away and will soon be home again with all of us.

Turning around

Yesterday was a very uneventful day for Xander. In fact it was a very frustrating day to say the least not just for me but for the doctors as well and it was stressful for Xander. We started the morning with an xray which showed that or right lung was still collapsed in areas. Then we had 4 doctors in our room brainstorming on what to do next. So we paralyzed him so that we could be in control of his breathing to take the stress away from him but that did not work, his #'s did not go up like that had thought they would by doing that. We took blood every hour to see where our blood gas levels were and they would go up and down but would show that he was not letting all of the carbon dioxide so it was back to the drawing board, it was test after test from there and still not knowing what to do. Then at midnight his nurse requested zopinex (breathing treatment) one that is not harmful to him due to his heart. Thing started to die down after that he became more peace full and gas tests started to come back better, at around 4am he fully turned around and is now having a very relaxing day and all doctors are please with what is happening so we are giving him zopinex every 4 hours his xray this morning showed that his right lung is starting to inflate again. So from here we watch and let him do his thing as he gets back on the road of recovery.  

our home away from home

Well we are back at our 2nd home for a bit. Xander has come down with RSV. For those of you that know of RSV you know how dangerous it can be but it can and is deadly to heart babies. With all of the precautions we have taken this still ended up happening, we were told by the doctors and nurses up her that he more than likely contracted it from coming to doctors offices for appointments up here at the PCMC. This morning we were moved from the 3rd floor down to the CICU/PICU on the 2nd floor. Xander has been fighting for air all day and as the hours have gone on it has gotten worse for him. We hit 90% oxygen help at 8:30 pm which at that time we all decided that it was in Xanders best interest to be incubated so that we did not ware out his heart. At this time his heart is doing great but his lungs are failing. His right lung has collapsed from the middle on up leaving just the bottom lobe open.  Unfortunately  as of right now  the ventilator is not working as well as we had hoped so now it is back to the drawing board to see what else we could do to help his lungs. Needless to say it is going to be a very long and emotional night. Also Xander is now back at birth weight 6 pounds 15 oz.  they tested my milk to see if maybe there was not enough calories and fat in it but it came back at 23 calories which is actually 3 calories over what breastmilk actually has in it, so they have now taken his hourly 27 fortified calorie  diet to 30 calories every hour. Xander definitely has the doctors and respitory therapists scratching their heads on what do right now.

day by day

Its been a while i know but i have some great news.. On Wednesday 3/16/2011 Xander had his follow up appointment from being released from PCMC. He had an xray,ekg, and feeding tube replaced. His xray came back great and his ekg was awesome as well. they check his stas whith him off his oxygen for about 30 minutes and he was able to hold his own air supply up in the high 80's. YAY!!! He is now off of the oxygen but will evwentually need it again as time gets closer to his next heart surgery (Glenn). He is not gaining any weight though but instead is losing so we are still sitting at 7 pounds 3 oz. which he was 7.5 when we left the hospital with him. They have upped his feeding dosage from 18cc to 20cc an hour, hopefully we can get him to thicken up soon, but in the meantime i am enjoying his smallness since i lost a full month with him and playing dress up with the newborn clothes while i can since we still fit in them at this time. Xander has proven that he is a fighter but he has also brought our little family unit tighter and closer than we could ever imagine it to be.

Our new life at home

Well it will be a week tomorrow that Xander has been home. It has been great not having to go back and forth and being able to be with the other kids at night as well and not feeling like we never see them and them feeling like mom and dad are never around anymore.  Things at home have been a bit stressful but at the same time if it wasn't i guess i would feel like there was something wrong lol. The first night Xander was home it was crazy, i was scared and happy all at the same time. It does not matter how many times they go over everything with you about meds and how to care for him, you always seem to forget something for just a brief moment and then it freaks you out. I think the first 3 nights having Xander home i walked around the house not know what to do but think to myself of everything that needed to be done for him and at what times and watching the clock so that i did not mess up the dosage times or even forget to give him what he was to have. FINALLY i think i have settled down a bit but not much lol I have his med schedule written out and posted on our fridge and i have alarms to go off on my phone as well to remind me just in case. Xander was able to have his PICC line removed today THANK YOU LORD, that thing was not my friend at all. I had someone ask me the other day, " How is it that you have not completely lost it yet but have kept it all together and have such a positive attitude on this?" My answer to that is, I do it for Xander, all selfishness goes out the window i can promise you that!

How i feel

This pretty much sums things up!


You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?" I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through. It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser. It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly… It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow..

We are HOME!

Nick and i are happy to announce that we have brought baby Xander home. On thursday morning 3/3/2011 we asked by the cardiology team to stay the night so that they could teach us all about how to give him his meds and would be able to do them ourselves that night as well. At that point we were told that Xander was going to be discharged the next day to be able to come home!!! It has been a very long journey to get hiom here but it was SOOOOO worth it. We are now trying to get home life back on track and get into the groove of doing all that needs to be done for Xander everyday and sometimes every hour.  These next few months are very crucial for him as he will be going back in to have his 2nd heart surgery in the next few months which is called his Glenn procedure.  Thank you to all that have been our support line you all mean the world to us!

So much information

Well today marks a month that Xander arrived at PCMC by life flight, and you deffintly would not think by looking at him now it was only a month ago. He looks amazing. Nick and I have been learning all we need to know about his meds, how to distribute them how to properly flush his lines before and after, how to feed him through his NJ tube, and so much more. Its very nerve racking to know that there is so much we have to do and watch for but the only reason why that is, is because we want to make sure we are doing it right and nothing happens. its pretty scary that is for sure. I think the one that scares me the most is his PICC line and how we have to be very careful with that one. If anyone has had to deal with a PICC line before you know what i am talking about then. But with all that we have to learn and are being taught i am super excited that it is finally here cause that means he's coming to the stage of going home soon, but when?!?!?!?

Xander is a month old today!

I cant believe that Xander is already a month old and what is even harder to realize is that he has already gone through so much during his first month of life. He has deffinitly proven his strongness and determination. He is doing so great and i know that with each day that passes Xander will continue to get stronger and we all will get to enjoy this bundle of joy and what he is going to teach us through out his life here with us. We did get some exciting news today but at this time we are keeping it hush hush. We will post what that is at a later time this week.

Swallow test Today

Xander had his swallow  test done this morning at 11:45, poor wittle man was MAD that they took his food way from him again 2 days in a row. Well he did not pass his swallow test only because he aspirates it which as we all know is not good what so ever. He will need to come home with an NJ tube ( feeding tube), ether way i will take whatever pumps, medicines, etc just to have him home! We were told today that the discharge attendent is getting all things in order with our insurance and home health care so that we can go home soon, which as of tonight that soon may be friday or saturday from what our nurse told us she over heard YAY. It'll make a great birthday present to nick if that happens!