Xanders "FOB"

Hello:

Xander's Dad here or as they referred to me in the Nicu "FOB" (Father of Baby). yeah kinda dorky I think.. they didn't call mom "MOB" just mom. Anyway that was just a fun memory of the Nicu. I was informed by my wonderful wife that today is Preemie power day . so I thought I could share some memories and thoughts about our son Xander. As its been well written by Jen (MOB), Xander was born June 23 2009 about 13 weeks ahead of schedule. and that made things exciting for everyone. I was admittedly not very worried. Unlike Jen she was understandably freaked out.but it all when well for the most part Xander was born and he was in good shape, needed a few things to get comfortable with air. after that he requested a heated cubical with 24 hour room service ect, yup he worked that place like a pro. he had everyone at his beck and call. I was to be honest a little jealous. but hey any guy that can just lay around and have a dozen or so woman wait on him like royalty is well totally awesome! Ok so we are making visits to the Nicu every day of the week just to get a little time with our boy. he was really small so small he could wear my wedding band around his arm. yup it was really something to see a baby that small.. and it was cool too. our dude was strong.and he did well in the Nicu. there were good days and bad and only one time did I get Upset. that's when they had some woman on loan from somewhere in the hospital watching him and she just was a total failure for our son.she at one point had his foam cpap pads jammed in his eye and she could not figure out why he was upset. so I fired her and took over, after that we let it be known that any incompetent would be dealt with quickly. and it would not be good. other than that I was cool with our sons time in the Nicu. it can be very sad though cause as many know you see a lot of other little babies and some go home to God early and that's sad and happy at the same time. you know your sad they had to go but your happy they didn't have to suffer any longer and they get go to God's cool house. I didn't think or worry to much as I almost always felt good about Xander and I always thought he would be good to go and I never doubted him. Now Xander is 17 or 14 months old depending on how you look at it. I go with the 14 months cause he was severely short changed on bake time. so he gets extra time to get everything sorted out. some may ask is he "ok" or does he need special care ..nope he is just perfect and he has no problems.. and on top of being perfect, he is smart and strong as can be. he does have a workout routine that the wife calls "baby boot camp" its cute he does like 100 sit ups and 50 push ups and I think he is up to pressing like 25 pounds. its really impressive. I give all the credit to Jen she is a fantastic wife and Mother. also Xander was given looks that make women melt. so he will find out how handy that will be when he gets older. Xander is now very close to walking and that will add so much more fun for us. as with any toddler Xander figures out how to open about everything and he loves to investigate every nook and cranny. and if the cat stays in one place to long he has to fight for his tail.yup it has be a very cool experience having a preemie but at the end of the day he is just our son and I really don't think of him as a preemie. he is just my little Buddie. so for all the preemies out there I think your the example of the "can do" type of people that we can all respect and appreciate. so on this Preemie power day I say let all the Nicu babies be desat/tac and brady free. and all Preemies out in the world have a totally rockin day.

Life in the Nicu

Since today is the start of Prematurity awareness month I thought I would do my first post on What it's like in the Nicu..The rollercoaster that all family's experience and the fight that our preemies endure after they are born...Before Xander was born I was already in the hospital on bedrest due to my high risk pregnancy..The doctors were optimistic but you could tell that having a premature baby in my case was a harsh reality that was going to happen..Xander was born via emergency c-section at exactly 3 a.m. weighing 2lbs 5ozs..Being born at only 27 weeks gestation, 13.5 inches long and no fat on his body, my husband and I were prepped for the the long road ahead of us..I could probably write a book on those first few weeks in the nicu but I just want to sum up the reality of my experience..After recovering for a couple hours and the doctor's stabilizing Xander, I went to the nicu to see my baby for the first time in a issolette, hooked to a number of mechanical devices and a ventilator and then cpap doing some breathing for him..To say that was traumatizing is a under statement, little did I know that this everyday re occurrence of guilt, heartache and non stop worry would stay with me for a very long time..Even some of the nurses try to make you feel better by saying, oh he just needs to gain weight, or as soon as he doesn't need any o2, or as soon as he can take a bottle it will all be o.k..I think a lot of people think that as well..That these babies just need to gain weight and do this and that, and yes that is all some need, but what your not told is that a large majority of premature babies are so sick, that they will face life long challenges and some even life long disabilities..I was not told a whole lot while in the NICU, as far as statistics on Xander having any disabilities..I do remember one of the Doctor's telling us he had a 70% chance of living, which was so hard to hear..I was so very desperate to know that Xander would survive and have a great quality of life, but in reality i just wanted him healthy and home and then I could make it all better! There were a ton of days that when we went to the hospital Xander was very sick and couldn't be held, or he needed a blood cell transfusion, because his body wasn't producing enough yet, or he had to be bagged because his o2 levels were unstable...Phone calls in the late night or early morning saying "we think Xander had a seizure and are getting ready to do a ultrasound" or "he has a infection"...At one time I felt that this ride would never end, but it did, thank god! After 65 long days in the NICU Xander came home..It has been a little over a year since coming home, we so far have avoided a lot of the long term issues that preemies can face and I still find myself checking to make sure he is breathing o.k. when he is asleep and I still stress about his weight(though it is fine)..Our Nicu experience changed our lives, as it does thousands every year and a piece of good advice I was given and would like to share is to enjoy and appreciate the good days in the NICU, and to do whatever you can to get through the bad..Xander today is 16 months old/ 13 adjusted..He is healthy, happy, vivacious and has a way of making anyone's day better with his smile, he is a miracle! I left out so many details, and I know everyone's experience is different and unique..I hope I can do at least one thing this month that helps raise awareness for preemie babies, in hopes "that one day all babies will be born healthy"

Fight for Preemies

First Dentist Appt and 15 month appt!

Xander had his first dentist appointment and it went great..He has 6 teeth and is getting ready to cut molars(ugg)..He did really well throughout the whole appt and the dentist was awesome!! As usual he stole all the ladies hearts while we were there, they seriously wanted to keep him! He also had his 15/12 month well check today, he got his regular vaccines and his flu shot..We were all sick last week and it totally sucked! This was really X's first bad cold since being born, overall he did awesome with it, we used alot of simply saline and a nasal aspirator a few times a day and fortunately that did the trick..A few days after Xander got his cold, he was nice enough to give it to me, then I gave it to Tom!! And to top that off Tom and I came down with the flu a couple days later..So we were all sick and miserable, the first day with the flu was so bad that I took Xander to his grandmas for the day so I could come back home and sleep all day, I physically could not care for him that first day, it was awful but we got through it and back to business now! So back to Xander's doc appt..He only gained 7 ozs since our visit 3 months ago but that was to be expected with him being a crawling superstar now..He is burning much more calories these days!! So he's about 25 lbs give or take a ounce or two..Overall Doc said he looks great!! Today is Xander's EDD for when he was suppose to be born, so he is one year adjusted now..Within the past two weeks we have transitioned him to a sippy cup full time, whole milk and table foods..It was so much easier when it was only formula, I knew he was eating a good amount and had no worries..now with the whole milk and table foods I am constantly wondering if he is getting enough food in general, along with giving him good foods..He would drink all the whole milk I gave him if he could but the doc said limit him to about 24 ozs to ensure he will eat enough table foods..So I have been making three meals a day and offering snacks a couple times a day, it's just hard to judge how much he eats and if it's enough, but I need to just relax with the whole food thing..I'm sure I would know if he was not getting enough!! Another awesome thing is X is saying MAMA!!!! Yes that fine day was 12 days ago, I walked out of the living room and Xander was in there with Tom and as soon as he saw me walk away he said MOM!! It was so cute, and he has been saying it ever since..He has severe mamaidis right now, super clingy and not wanting to be out of my sight..Developmentally we are working on strengthening his lower body, and our next goal is X being able to stand independentally and then eventually take some steps on his own..As of now he is still very wobbly and cant stand unassisted but loves to pull himself up on things and is getting better at cruising..He will get there when he is good and ready!!





So funny, sleepy baby:)

EI scores and good food

Just wanted to do a quick post..Our Team from EI/Help me grow came out to the house and evaluated Xander 2 weeks ago in all developmental areas and today the OT came back to the house to go over everything..I really wasn't sure what to expect, I knew Xander was doing fantastic in all areas and I also knew with him having low tone that that could of hurt his scores a little bit, but ended up not hurting at all since he is crawling and pulling to a stand, and even cruising now..So overall X scored between 12 and 15 months on everything!!!!!!!!!!!!! Yep he is a super baby, he may have low tone and do his gross motor skills on the later end of the timeline, but he will do them!! We also will be doing aquatics together to help his tone issues, which I'm very excited about..Xander loves to swim and so do I so it will be great..We will continue PT and do everything to give X the added little help he needs..We also went to dinner the other night and I wanted to post some pics from it because it was the funniest thing ever..We've been out to eat many times before, but this time Xander felt like getting everyones attention by looking at them and yelling hey(that's what it sounds like)..Seriously people were ooohing and awwing him for a solid 30 minutes..He was so funny!! His personality continues to shine and he is able to express himself more and more everyday..So it was just super funny..

I've been slacking

And there's no excuse except for complete lack of motivation to blog..And X has been back on sleep strike for a solid three weeks, he wakes up every few hours in the night screaming..could be the four teeth all coming in at once or just the fact that he's having seperation anxiety in a big way..not sure, but he's healthy, cute as ever and CRAWLING!!! Yes my superbaby finally began crawling on all fours after months of only army crawling..Could be the Pt we've been in for a month, could be my daily baby boot camp or just that he realized he could and got the confidence to do it..either way he is now crawling, doing much better at pulling to a stand and is even attempting crusing around on the couches!! Since Xander started pt a month ago I figured it would be a good idea to go ahead and call Help me grow/ early intervention in our county so we could expose him to all the help we can get for his low tone..EI has already been to our house and went over a ton of stuff with us and X..They will be back next Wednesday with their assessment scores..The PT that came out was very nice and she was wonderful with Xander..She also said he showed no red flags for any other conditions and was pretty impressed with his abilities to do things for himself..Tomorrow makes one year since Xander came home from the nicu, there isn't a day that goes by that I don't thank the good lord for him..He is and always will be my miracle boy and watching him grow and develop, and seeing his personality coming out makes me feel like the luckiest mama out there..Xander is a amazing little boy and the joy of my life!! That's about it, we've been living and loving life, preparing for the upcoming RSV season without synagis and having fun everyday!! Life couldn't get much better..

Catching up

X had is 12 month well check at Children's high risk clinic about two weeks ago..He was tested in all areas of development and did wonderful..He tested around the 10 1/2 month range for speech, expressive language and cognitive skills, fine motor skills and right around his adjusted age for gross motor skills..We were sent to a physical therapist at another Childrens hospital to see if Xander was having some tone issues..The OT at his well visit thought he might of had a mild case of low tone in his trunchal area(or belly)..And she was right..The PT said X has mild to moderate low tone in that area and that is what has kept him from traditionally crawling(he army crawls everywhere)..He also struggles to pull himself up and has some balance issues(all from having a weaker belly)..I was a little surprised since X had always met his milestones and at every well check there were never any issues, but that's o.k. we now know what's going on and I have been doin exercises with him everyday, and can already see improvement in his balance..Along with the home exercises we take him to childrens twice a month for PT..He's still a superbaby in my opinion!! X was 24 lbs and almost 29 1/2 inches!! It was awesome seeing his growth chart...just watching the numbers go up over the past year..The doc said it is amazing how quickly he has caught up!! Here are some pics of the doc visit and some random ones..Gotta love those cellphone pics!










Xans girlfriend..showing him whose boss:)


This is Ali(aka..xans girl)she was born on Xanders EDD..Sept 22nd