What I want more than anything in the world….

Something happened this weekend, that sort of caught me by surprise. Friday after work I was excited to go do a little shopping with my sister and sebi, as we left Old Navy and I put sebi in his car seat and realized I didn’t have my phone on me, I ran back to the store straight to the cashier to see if I left it there, he said he hadn’t seen it, I then ran to the shirts and my phone was not there, (I was at that store for about 20 min, all I did was grab some shirts paid for them and left, I knew I had my phone as I walked into the store.) After having the store call my phone and not hearing it ring I realized I was out of luck, I had officially lost my phone. Of course the first thing that came to my mind was the 4,000 pictures that I had just lost. But most important was the fear of telling my husband that I had lost my phone. 

As I called Lance from my sister’s phone and told him the story pretty much all he said was ok, drive home careful I’ll see you when you get here. That caught me by surprise and I couldn’t believe that he wasn’t upset. I got home and Lance was outside, he said hi and treated me as if nothing had happened, he let me borrow  his phone and he went on to mowing the lawn. 

Within a couple hrs Lance was on KSL looking for a new phone for me, I was still a little confused… (we have some super old phones at home, I figured he would just have me use one of those) I’ve been wanting a Galaxy S3 (not only did I think I would never get it, let alone get one after losing my phone) sure enough Lance found me the exact phone I wanted and it was only $250 we went and got the phone. long story short, the very next day the phone froze and wouldn’t start back up. Once again Lance didn’t make a big deal out of it, he called the T-Mobile store and found out prices of some different phone. He dropped me off at home and said he’d be right back. He ended up waiting in a super long line at the store in Provo to find out they didn’t have a galaxy S3, so he went to Orem, got me a brand new phone that I wanted and brought it home. 

I’m not going to lie, I was still shocked and amazed on how he could have possibly stayed so calm during all this phone situation, Lance and I try to be VERY careful with money, after all we NEVER know what sort of bills will come next with little Sebi, we need to be prepared for every kind of emergency and we better have the money to pay for whatever may come our way. with that being said we would never go off and buy a $500 dollar phone, let alone after losing one and buying one for $250 that ended up NOT working… 

I simply told Lance thank you, not only for the phone but for also keeping his cool (obviously deep inside he wasn’t happy, and I felt very guilty for having spent that much money on myself and for being irresponsible for losing my phone) the next thing he said to me was simple but I haven’t been able to take it out of my mind since, he said “As long as Sebastian stays healthy I don’t care what happens, its just money.”  At that very moment I realized just how much love Lance has for his son. I also realized that what he wants more than anything in the world is exactly what I want. Sounds so simple, a healthy happy baby. 

Life-

If you are not in the mood to listen to sob stories and a little whining you should probably not read it… For those of you who do read it, good luck, I’m sure I’ll make no since…

I’ll start with a Sebi update of 2013. 

I had been extremely excited about 2013, and I thought it would be a much easier and worry free year, with Sebastian’s birthday around the corner, all of his surgeries taken care of, and him finally drinking thin liquids, there wasn’t much else to go wrong. 

with everything Sebi has gone through I think its extremely unfair that he is always sick… 

we had a few good weeks in January, and I was staring to think that 2013 really was going to be a great year.

Mid January he got really sick, his pediatrician at the time didn’t think it was anything and gave him antibiotics, he didn’t get better and we ended up taking him to the ER (why is it that kids are always at their worse in the middle of the night, when the docs office is closed) they tested him for RSV it was negative, he still didn’t get better and was going on 3 weeks of being sick (he would have a few good days here and there) finally we were referred to a different doctor, which finally had found out that he had Pneumonia (we were lucky he didn’t have to go to the hospital and within a few days he had started feeling better) I went from feeling extreme relieve, thinking I had found a good doctor, to thinking that particular doctor was completely out of his mind, he ended up ordering tons of unnecessary blood work for Sebastian and then over a month later had his nurse call me to tell me they wanted to do more blood work and test Sebastian for Leukemia  because his white blood cells had come back high, she said this to me like it was no big deal, and also said that if i felt like he didn’t need more blood work done (because I had previously expressed my frustration about all the blood they wanted out of him) that I could wait and do it another time when he’s older… Umm excuse me, but first of all, if my doctor thinks my child has cancer he better be calling me directly  and second if my doctor is truly concerned, he better tell me to get my child into a lab right away and not tell me that if I don’t want to run more blood work its ok…. (that’s basically a long story short) we then dropped that doctor and went out in the search for a new one. I was no longer optimistic about an easy year. 

Thankfully during Sebi’s birthday he was feeling ok and we were able to have 2 birthday parties for  him and he got majorly spoiled. meanwhile we found a new doc. he was feeling great for about a month.

April rolls around and we end up in the hospital for 3 days, Sebi had viral and bacterial pneumonia (AGAIN) AND RSV. Meanwhile I start to feel extreme pain in my tummy and I end up in the emergency room, turns out my intestines were inflamed (could have been worse) then Lance had major tooth aches and had to get a root canal. Also at the time our AC/Heater went out  and we had to replace that. Lets just say April was NOT a good month for us… 

Sebi started acting SOOO much better after coming home from the hospital, and for a month he was totally fine, we tried switching him to whole milk turned out he wasn’t ready for that, he just isn’t eating enough solids to get the nutrition he needs, and he was drinking too much whole milk which of course made him constipated. 

Now we are into May and of course he is sick again. Almost exactly a month after coming home from the hospital, I’m kinda sad about this sick pattern that I’m seeing in him. 

Sebi’s Scoliosis has gotten worse from last time he was seen in October, he will eventually need back/neck surgery which will be extremely major, very hard on ALL of us, and will be a very long recovery. He’ll most likely need multiple surgeries and I’m just hoping and praying he will be able to stay stable enough to not need the surgery until he has grown a ton more. 

So to say the least this year has not been as worry/stress free as I would of hoped. we are also trying to deal with changing insurance next month.  

On a lighter note:

Happy 14 month birthday to my little guy… its been quite an adventure… and aside from all the crappy things that has happened, there has been SOOO many good times, even though he is behind on his motor skills, his cognitive skills are VERY much where it should be. this kid knows EXACTLY what he wants, doesn’t want, likes, and dislike. he has developed quite the personality and attitude… 

none of the crappy times compare to how extremely happy he makes me. I’m so lucky to have such a special baby boy, I cant believe he has chosen Lance and I to be his parents….

Sorry about all the complaining there are days that you just need to vent… Now I feel like bragging about all the great things about sebi… I’ll save that for another day  

Birthday Party # 1

we decided to have two birthday parties for Sebi, we figured one party would make things WAY too crowded. 

We just invited some friends over for cup cakes and ice cream, even though Sebastian had taken 2 super good naps he was still extremely tired by the time everyone got to our house. therefore we got right to present opening and cake smashing, which surprisingly enough he did play around with his cake, and it was really fun to watch him!!!

Thanks everyone who came to his party, thanks for all the presents and for all of your friendship… we truly have great friends and family! 

here are some pictures. Thanks to Amanda and my sister who took them, if it wasn’t for them we wouldn’t have ANY pictures!!! I will try to do better this weekend at birthday party # 2

ImageImageImageImageImageIt was SO fun having his little friends over for his birthday!!! Image

ImageImageImageImageImageImageImageImageImageSebi’s good friend Abe and Afton were also there, and his brand new friend Eliza! Image

Another birthday Post

Sebastian woke up at 7:30 this morning, he had apples and beans for breakfast (YUM!) we got on skype and talked to grandma in Brazil, who sang happy birthday to him and then he went down for a quick 30 ish min nap.

We left around 11 to check out his cousin Parley from School and pick up aunt Simone to go to the living planet aquarium, and even though he was extremely tired I think he quite enjoyed looking at the fishes…

Image Image Dont mind the sun glasses, i forgot my real ones in the car and my sunglasses are perscripted so i figured if i wanted to see the fishes i would have to keep them on

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We then had lunch at a little Brazilian place. we were home by 4 and he had a doc apt at 4:30 he got 6 shots and it was SO sad, its not often we see him cry like that… We came home had dinner and he was in bed by seven…. I had to wake him up around 8:30 and make sure he was awake until 9:07 for his official BIRTH date!!!!

Image Sebastian studying the menu making sure he orders the perfect birthday lunch!

Image Silly baby!

Image He really wanted to wear his cousins glasses!!! SOOO FUNNY

Image he was SOOOOO tired!!!!!!

Image and…he’s out!!!

Image New Pjs!

I think he had a fun day!

Sebastian’s Birth March 6, 2012!!!

I realize I’m a year late. but I remember this day like it was yesterday…. Here it goes!!!!

Feb 28 rolls around and not only was I coming in for an ultrasound, and an apt with Dr.   Milan, I was also gonna see someone in regards to a delivery plan, AND I had to do a 3 hr glucose test (because my previous one was high) So Jan brought me to the hospital around 9 am and we got started on the blood work (in which I had been fasting for 8 hrs) meanwhile we went In for an ultrasound, the ultrasound tech didn’t wanna tell us anything and I didn’t push for it, she said the doctor would go over everything with me, she then checked my cervix, I told her I could not wait until talking to the doctor I needed to know the measurements of my cervix, I was SOCKED when she told me it was measuring .5 cm… in 2 weeks I went from 1.4 to .5 I couldn’t believe it, I also couldn’t believe that they let me go back downstairs to continue my lab work, meanwhile Jan and I went to the pharmacy to pickup my prescription. While at the pharmacy I rec’d a phone call from Dr. Milan saying she was looking for me and she really needed to talk to me. I knew it wasn’t good news; c’mon my cervix was measuring .5 (normal measurement is 3 cm)

I met up with Dr. Milan and she said she had to admit me to the hospital, I thought to myself “great here we go again” I was sad and crying at that time, I had only been home for 4 weeks and now I have to be in the hospital again, at this point I also knew it was bad with my cervix being THAT thin, it was now a matter of days… I got done with my glucose test which turned out negative (thank heaven at least one good news) and headed upstairs to labor and delivery, they admitted me and checked me out, at that point I was dilated to a 2 cm, I couldn’t believe that I was already dilating, I had 2 ½ months left of being pregnant, I couldn’t possibly be dilating already. They kept me on the monitor for a few hrs then they transferred me over to a different room and everything started all over again, the doctor decided that unless I felt different they were not gonna check me out again until 32 weeks (that meant I was FOR sure going to be in the hospital for 3 weeks) they also did a test to see what my chances were to deliver within 48 hrs, the test came back negative and Dr. Milan was pretty sure I would go at least until 32 weeks… this hospital stay was a lot different than the previous one, I was almost comfortable at this one, knowing what to expect (being woken up every few hrs to check baby’s heart beat and my blood pressure, having an IV, giving the baby steroids, giving me pills to stop contractions, etc… Dr. Milan also told us we could not go to the Temple to get sealed on March 15th, she said it was too dangerous for me to leave the hospital. With this visit there was no MRI’S. Chromosome test or as many stress tests, the days seemed to go by a lot slower… I was in the hospital for 7 days nothing happened, which was good, nothing was suppose to happen, I was just suppose to lay there for 3 weeks and hopefully go home after that and deliver my baby at 35-37 weeks (that was my plan, and I was ok with that, even though it meant crazy bed rest)

On March 6th at 1 am I noticed I was spotting, I was scared and called the nurse, she checked up on the baby and he was fine, the doctors weren’t too concerned about it, I woke up at 4 am and the spotting had turned to bleeding, I called the nurse again, they checked on the baby and he was ok, they checked to see if I was dilated any further, I was at a 4. At that point they wheeled me to labor and delivery, I was SO scared. I was put back on the monitors dr. Milan said that they would just monitor me and the baby and they would check my cervix every few hrs, within a few hrs I was at about 4 ½ and I was contracting, I could not eat anything, I was soo tired but unable to sleep, so uncomfortable with the monitors, and I once again had another IV in, which was by far the worse IV I have ever had, it didn’t make things any better that I had to pee every hr… Even though I had dilated a little further Dr. Milan still said it was possible I would stop contracting and dilating and we could have a few more days.

We were in labor for 12 hrs with nothing happening, besides the contractions which were coming every 4-7 min.. Finally around 5 pm I felt a huge gush down my legs, I freaked out and hoped it was my water that had broken, I did not want it to be blood (even thought it felt like blood) I told Lance about it he took a look and told me to stay calm and call the nurse, it was blood… The Dr. came in and checked my dilation, I was at a 7 and at that point there was nothing they could do (My body was changing to quickly and I guess that’s what was causing the bleeding) I was in active labor and the baby would come any minute.

It was then time for an epidural in which I was terrified about… all of the sudden there was probably 6 people in the room and then the epidural started, I was so scared, but next thing i know it was already over and it wasn’t even that terrible…

The doctor then said that within 30 min I would probably be pushing, I couldn’t believe everything that was happening, I was so over whelmed and I had a major breakdown, I just laid there my entire body shaking, just in shock not believing what was happening… I was about to have my baby, 30 weeks along, with all the challenges he would already be facing he is now going to be 10 weeks premature… What is he gonna look like, is he gonna be ok, is he gonna be breathing, what kind of help is he going to need, how is him being premature going to affect his other conditions, how long will he be in the hospital, my mind was going a million miles an hr…

It was almost 3 hrs later before I was dilated to a 10 and they wanted me to start pushing. I didn’t even have to push for 15 min, next thing I know Lance is cutting the umbilical cord and they were transferring my baby through a window, straight to the NICU.

All I had was a quick glance at my baby, and thankfully my sister was able to take a good enough picture that we could look at, that’s all we had… a picture to stare at…. It was almost 3 hrs before we were able to officially meet our baby

At 9:07 pm on March 6, 2012 a beautiful baby boy was born, 3 pounds 4 ounces, 16 ½ inches long. 

It was SO bitter sweet seeing that tiny precious baby boy, he was SOO cute, he had curly looking black hair and he was absolutely perfect, however all the tubes and cords all over his body just absolutely killed me, it was so sad to know I couldn’t hold my little guy, I couldn’t take him home, and I could no longer protect him inside of me, I felt helpless… I didn’t know why he had all these tubes and wires all over his body, everything was SO overwhelming, I didn’t know how to feel… we were able to give our precious baby a little kiss and that was SO good to feel his skin/hair 

Sebastian was in the NICU for 3 months and 2 weeks…. there were so many days I was convinced he would never leave, so many ups and downs, it didn’t help that we lived an hr away from the hospital. 

As of today Sebastian has not yet been diagnosed with anything, the genetic doctors have a couple of ideas in which we will soon test him for. 

And though he has been through many surgeries, and endless doctor visits, he has already beat a lot of the odds, and he is a very happy 1 year old baby.

Sebastian inst walking yet, he’s not even crawling, and when it comes to sitting he still needs some support, he’s not as strong and as firm as your typical 1 year old. but he is always learning something new, he’s always developing and making progress. He waves bye bye, he says mamma and dadda, he’s finally eating baby food, just the fact that he eats by mouth is a MAJOR miracle, he’s 18 1/2 pounds and is 30 inches tall.

Sebastian is a miracle baby. I could never imagine my life without him. I never in a million years thought someone could learn SO much from a baby, in such a short period of time. I will NEVER take the little things for granted, we are SO lucky to have Sebastian. And even though things might sound bad, and a lot of times hard (and don’t get me wrong, its NOT always easy, I have my days of major sadness and tears and all I can do is pray that eventually he will be like all the other normal kids) there are people out there who has it SO much worse, if anything Lance and I have it so easy, and we are SO blessed and so lucky!!!

HAPPY BIRTHDAY SEBI WE LOVE YOU!!!!!

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Sebastian’s Neonatal Follow up!

Once every 6 months Sebastian has a neonatal follow up, which consists of a very long day.  During this follow up he sees about 5 different doctors.  Today he was scheduled to go in at 8:45 at the Provo Clinic, so I was thinking it was going to be easy breezy.  I was also, incorrectly, thinking he was probably the first appointment and  a bonus we didn’t have to drive clear to SLC.  We get to the clinic (Health and Justice building) and its packed, basically chaos and lots of children everywhere.

His first visit was with the nutritionist, she gave us some really good ideas to try with Sebastian,  (since he’s NOT the best solid food eater, although lately he has been doing a ton better, so hopefully in no time he will be eating like a champ, and we wont have to spend so much money on formula) she also said that the eating skills come with motor skills which he is also behind on, so it makes sense why his solid food eating isn’t going so great.

He then saw the Neonatal doctor who just asked a bunch of question and also answered quite a few of my questions.

We then got him measured and weighed; 18 pounds 3 oz, 29 inches long, and 46 cm head.  Which puts him at the 30th percentile in weight, 70th percentile in height and 50th percentile in head (overall we have a tall skinny baby with a big-ish head, and that is for his adjusted age of a 9 month old)

The best appointment by far was with the psychologist who tested his cognitive skills (which is brain & problem solving skills) the doc was super happy with the results.  He said Sebastian is at 9 month old on his problem solving skills, which is ABSOLUTELY fantastic considering the docs at the NICU were VERY concerned about his brain and mentally how he was going to develop (as most of you know, he has a few abnormalities in his brain, so the brain is always concerning to us all).  I cannot be any happier with this news, he also said that his motor skills are probably at a 5-6 month level, which sucks but the fact that he is doing SO well mentally was the best news I could have received.  The motor skills results didn’t really surprise me.  It’s obvious he is slow and off with his balance and we think may have a lot to do with his scoliosis (we’ll see what happens in April when we see the spine doc).

He said Sebastian looks worse then he is!  What was meant by that is when people look at his motor skills and think he is VERY behind, which he is.  However his cognitive and problem solving skills are looking very good and eventually he should develop those motor skills (which once again explains the eating thing).  He also said that Sebastian will likely be the kid that throws tantrums because of the fact that he is so much more advanced mentally than physically.  So his brain will tell him that he can do something but physically he won’t be able to do it; this will cause him to get very frustrated and throw a tantrum which makes perfect sense and I can already tell he is starting to do that.

We also saw the hearing doc, which surprisingly he did not pass his hearing test (which doesn’t mean he can’t hear, it just means certain pitches aren’t as clear as they should be) so we are gonna go see a specialist up in primary.  They will probably have to put him under and do a more accurate hearing test to look further into the brain waves and what’s going on there, right now we are not too concerned about it.

5 1/2 hrs later we were done… it was definitely a long day, by the end of it all Sebastian was extremely tired and ended up taking a 3 1/2 hr nap…

Just thought I’d update everyone on his progress, I’m one proud mamma, so happy with everything he has been able to accomplish.  I know he is developing at his own time, but this follow up made me even more optimistic about his future. It also gave us a chance to talk to other parents who have kids who are going through similar things and lets us know we are not alone.

Our little boy will be 1 in less than a month, I cannot believe how fast his first year of life has gone.  He is definitely our little miracle, SUCH a happy boy, and at the end of the day, that’s ALL that matters!

Here are some fun pictures!!!

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I can’t believe how big he looks in these pictures! Image

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Update/pictures

This month Sebi finally got rid of this:

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We took our first trip to the ER (Sebi has now been sick for 3 weeks, he has a nasty cough that he cant get rid of) he has been so miserable. This picture of him breaks my heart, all I want to do is take his pain away. 

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On a brighter note, he quite enjoyed his little jumper this week: 
and his head tilting has improved a ton since the helmet came off 

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sound asleep:
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he has finally started sitting up… I love my little guy

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