Friday, January 20, 2012

Looking back

We always try to find the answer on why things happen or why did I not see this when things happen to us. I myself have been thinking this to myself for the last year but recently it has been even more so.

While gathering pictures of Xander to be put into a project my dear cousin is helping me on I came across the pictures of the day he was born and in those pictures right there i should have followed my gut instinct and spoke up. Xander in these pictures looks so purple and blue and seeing them having to use an oxygen bag on him just to get him to breathe right should have been an even bigger clue there was something not right, but i really just let it slide thinking that maybe this is what a full term baby looks like ( have never had actual full term babies before). Just going over these pictures seriously put me in a funk and the blame game started all over again.

As I continued to do this it finally (yet again) hit me that there was no way i could have prevented anything if i had actually said something was wrong, what was about to be was always going to be what it was there is no way i could ever change that. He came to us with half a heart for a reason. He loved god so much that he just could not leave him fully so he left half of his heart with him and came to us as a special blessing.

Xander is an amazing child to say the least and with every trial that has come his way he has proven that nothing will hold him back ( he gets that from his daddy i say) his little body can only handle so much but man when that boy is determined to get that toy at the other end of the living room he will force all of the energy with in him to make it to it with out having to stop and rest.

We were told that he may not be here long but really do any of us know how long we will be here? The only one that can determine our time length is the one who sent us here.


Sunday, January 8, 2012

Update in the new year!

Well it's 2012, wow how 2011 flew by. I'm sure it's because during the majority of it I was in a walking fog, but 2011 definitely taught me many things about myself especially but also about my family!

I'm noticing as the weeks get closer to Xander's birthday my emotions are high. Just visiting the OBGYN and seeing all of these beautiful pregnant woman brings you back to where it was that happy period, you know the last few weeks of being pregnant counting down those days til you no longer have to share what little space you now have in your body and knowing your healthy baby will be in your arms soon.

Now you look at every pregnant woman wondering to yourself, "do they know there could be something wrong even though they have been told everything looks great"? Yep I have those thoughts and it's pretty normal to have them as well.

On a Xander update: he is crawling and exploring ALL over the house!!! It takes a lot out of him but he will rest in between each crawl until he gets to where he wants or what he's going after!

He will officially be off tube feeding for a month on the 14th!! I was SOOO excited to send that dang food pump back!!

Now if only I could get the oxygen stuff to go away, but that will come with time!

Monday, December 26, 2011

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!

Sunday, December 18, 2011

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!

Friday, December 2, 2011

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 mak
ing 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 an
yone'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 th
is 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!

Monday, October 31, 2011

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!

Monday, October 17, 2011

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!!