One Year Later...

Hi, everyone! Well, I have been thinking about Bean's blog a lot lately.  He has been up to so much and so much has happened that it was kind of overwhelming to even think about getting back into writing about it all but I figured, "May as well start now before he goes off to kindergarten or something and then I have that much more to make up for!" 

This picture is of him during the summer smelling our Agapanthas. He LOVES nature and being outdoors and playing in the backyard. It is one of his favorite things.  We have a busy weekend-tonight I have to finish his costume (he is going to be an owl, or as Bean calls them, a "Whoo Whoo!" because we have a Halloween get together with some of Bean's classmates and then on Sunday Anglie Little, one of Bean's NICU nurses is going to come visit us. She is in SF for a conference and was going to be in San Jose visiting some friends so she is going to stop by!

Monday we have school (did you guys know Bean and I are in co-op preschool? It's fun-we get to play and do whatever we want the whole time! We go for 2 hours every Monday) and they are also doing an all-school Halloween parade so all the kids get to dress up for that, then Wednesday Bean, Brady (Bean's best friend), Brianne (Brady's mom and my closest friend here in San Jose) and I are doing the preschool age trick or treating in downtown WIllow Glen (which is an area here in SJ) then that evening Rob and I are taking him trick or treating.  I'm going to go upload some pictures off my camera right now but here are a few from this summer.

Bean swimming at my sister's house. HE LOVES TO SWIM! We also did swimming lessons this summer which he LOVED.  By the way, he goes under water and thinks it's the neatest, greatest thing ever!

 Bean's preferred mode of transportation at my mom's house-the doggy door=)

Bean at the beginning of his peanut butter-Nutella-banana phase.

 Bean at a messy art playdate. This is also the first time he discovered a piano. I couldn't get him away from it for the remainder of the playdate.

Bean playing in the backyard with his Splash Center. This thing is the coolest toy.

Bean at the annual Silicon Valley Special Needs Kids meetup swim party. The director is so incredibly nice and this year Bean tried watermelon and he loved it-thank you Dr. Newman and all of our PSVMC family!

Back in CA

Hello, we have moved back to California, in the Bay Area. Bean is still getting to know all of his doctors, as are his Dad and I.  Bean is just now getting over a cold and I just got one. He has about 9 teeth now.  We've met some really awesome friends Brianne and Eric and their son Brady who is a few months younger than Bean. He and Bean adore each other and we all have fun hanging out. More updates later.

Teeth, Swimming & Less Barfing

Hi, guys Ok, real quick, Bean's first tooth came in on Saturday it was the bottom middle one on the left.  On Monday his second tooth came in, the top middle on the left and the first front four teeth are all about to pop through.  We go swimming a lot and Beaner loves it, as do I.  It is super fun.  We go to the indoor pool that has the wave pool, kiddie pool and spray features, we go to our pool outdoors at our complex and we go to the neighborhood outdoor pool which is a freakin' mad house but it's really cool. Oh, and Bean's new diet makes him barf like only once a day so it is a total life-changer.  More updates soon!

A Wrinkle in Time

Ok, sorry guys, once again, for the H U G E lapse in time between posts.  I looked at the last time I posted and it was in March! Really, March?!?!? However, in my defense the last 2 months have been NUTS.  At the end of March Bean was Baptized then from the end of March to the first 9 days in April Roy and Jeannie were out to see us, then it was Easter, then Jen came to see us and walk in March for Babies (more about that later), then it was Mother's day weekend which had some awesome and not-so-awesome parts as Bean's esophagus decided to take a veritable crap on him and he began throwing up large amounts of what literally looked like Cherry Coke.  It was old and fresh blood with secretions.  The a week later he got sick and when I say sick I mean he had explosive and constant diarrhea that looked like cottage cheese (complete with white chunks) which was covered in a yellow mucus and emitted the most foul odor I have ever smelled from a human being.  He was also vomitting non-stop and was running a fever of 102.8 then he got severely dehydrated and almost had to go to the hospital for fluids because during this time we decided to try to transition him to a blenderized diet but weren't putting enough water into the mix oh and 5 of his teeth are about to pop out right now oh and then my sister and Dad came out for beaner's birthday party and lucky me, I came down with exactly what Bean had 2 days before they get there.  So, yeah, it's been nuts but I have a ton of pictures to share with u guys from his Baptism to present.  However, tonight as Rob and I were wrestling with Bean's feeding pump I accidentally made the entire bag of blenderized food (fresh spinach, ricotta cheese, fruit juice, vanilla Elecare, olive oil and rice) EXPLODE  in a freaking huge GREEN mess all over the kitchen.  It literally looked like a Lysol commercial, it was hilarious, it was ALL over the floor, cupboards, refrigerator, walls, sink, BASEBOARDS (I was like, "What the hell, how did it get on the baseboards?") and of course in our hair, all over our clothes and skin and my glasses, oh and the mini blinds, which are getting washed in the shower so with that being said (typed) I am off to the shower.

Baptism and a Hernia????

Ok, so I am so happy to announce that Bean is getting Baptized on Sunday, March 27th at Immanuel Lutheran Church..  We went to Bible class on Sunday and I really liked the Pastor and the people.  They were so kind.  I'm really looking forward to getting invovled with them.  Yesterday at Dr. Nichols' office Bean and I were in the exam room and Rob walked in, looked down at Bean and goes, "Why is his button out?" and I'm like, "What??" and I look and his Mic Key button had fallen out of his tummy--the freakin' balloon had exploded!! It was literally in pieces.  So i insert back into his tummt, Bean coughs and it shoots across the room, lol!  Thank you God for Dr. Newman, though.  I called them and they said since we were right across the street to just come on over and they'll get him fitted with a new button.  Yay:)

Also, Dr. Nichols said it looks like Bean MAY have a hernia, in which case it would require surgery.  He said it's nothing to worry about right now and to just keep an eye on it.  But of course I'm freaking out.

A Child of God

I just had the most moving, humbling conversation with Bean's primary Pastor, Charlene, from St. Vincent's.  I called Charlene because I needed clarification on some things.  I want to have Bean Baptized very badly but I had wondered if he had already been Baptized.  The night before his first surgery I requested a priest to come to his bedside in the NICU to pray over him.  Father Tony arrived and blessed Bean.  He also came the next morning immediately before Bean was being wheeled back into the OR and he used Holy water and said the things that I have heard priests say on TV when someone is being Baptized or doing an exorcism (I know, I know, my theological cup of knowledge clearly does not runneth over...).

I also was unclear if a church would agree to Baptize a child whose parents were not nor had ever been married. I tried Googling the answers to these questions but came up empty-handed.  So I called Charlene. I first met Charlene when I was still an in-patient after Bean was born.  She came to my room in Post-partum and her wise and gentle nature won my trust immediately.  No small feat then, as I was on Magnesium Sulfate which can make people a bit crabby and I had a few "personality differences" with one or two of the nurses and doctors that waltzed into my room, so I was SUPER defensive and NOT receptive to anyone new. I've been fortunate enough to see her during our visits to the NICU, as she is there a lot...

So, we spoke and she told me that it may very well have been a Baptism that Robert received the morning of his first surgery but she was unable to bring up his file in the computer to verify it.  She asked me if we were connected to a church and I said no but I was planning on trying a new one this Sunday.  She suggested I speak to a priest there and inquire about them Baptizing Bean.  She said if they were not willing to do it to call her back.  I asked why someone would deny a child a Baptism and she explained to me that there are two ways to look at a Baptisim: One, it is a person's acknowledgment that Christ is their Savior and it is a public committment to a relationship with God, in front of those who support and nurture this relationship, i.e. the church congregation (I'm, thinking this is where the term "in front of God and every body" came from...?).  For a child it is acknowledging that it is your intention as the caregivever of this child to have them raised knowing God as their Savior and to instill in them the values of a Christian life and to foster and nurture their relationship with God.  This too, is meant to be a public commitment with your church so that, as Charlene put it, "the church is reassured that you arent just making a one-stop trip to have this [Baptism] done and then you don't do anything with it after."  Basically, they want you to be fully committed which is why they want you to involve yourself BEFORE to ensure that you continue to be involved AFTER.  She explained it waaaaaaayyyyy better than I just did but it totally made sense to me and motivated me very much to start going to church again.

Charlene said also, that in a way, Bean already was Baptized.  With all of the blessings, prayers and love that he received and with the fact that he just exudes this life force and energy, he proves to everyone that he is so full of life.  That made me feel better.  She said that he has touched so many lives and had such a profound effect on those who cared for him that his story will be told for a long time.  She called it "The Legend of The Bean." :)  I told her that I hoped his story brought other moms hope.  She said it did and that (real quick, I brought in a Valentine for the NICU with Bean's pictures and a quick synopsis of everything he went through and how awesome he is doing now, with a message at the end that read "Keep the faith, miracles do happen") the Valentine was read by one mother who was very moved by it and it did give her hope.  That was so incredibly humbling to hear that.  I told Charlene that all I ever wanted when Bean was so sick was hope.  I desperately craved someone to just tell me, "He's going to be ok," even if I knew they couldn't guarantee it, my sanity often hinged on whether or not I heard those five words.  That is where I received my hope in the darkest of hours. 

Charlene told me she was going to look further into the records to see if a Baptism was documented and that she would call me back.  Father Tony is no longer at St. Vincent's but he, Charlene, Laura (Bean's harp player), Skip and the rest of the Pastoral team at St. Vincent's are truly blessings and helped restore and preserve my faith in God  Thank you, thank you, thank you.  I love you all.

Weight Check

Hi all, sorry again for the pause in updates,we've been busy.  Oh, before I forget, I have some really cute pictures of The Drop (Bean) I just have to remember to get them off my camera.  Also, FYI I gave up Facebook for Lent. 

Ok, Bean had an appointment with Dr. Moyer (GI) today and he weighs 16 lbs 1.5 oz and is 26 and 3/4 inches long.  Physical therapy is getting cut down to every other week with Speech staying the same at once a week.  We are also trying to make all of his feeds take place at night while he is sleeping with just like an hour of feeds in the afternoon.  The bigger and more mobile he gets the more unrealistic it is for him to be hooked up to a pump, even with the backpack; that pump is freaking heavy and we're just not going to make him do that.  I cant believe he is almost a toddler.  Oh, did I mention that his birthday party is going to be at The Little Gym of Lake Oswego on Sunday, May 22nd from 10:30 a.m. - 12:00 p.m.?  Can't wait:) It's Elmo and Sesame Street themed. Heavy in the Elmo.

So we did the bottle thing for a week but then Ashleigh our Speech Pathologst said to just forgo the whole bottle thing because eating from a spoon is more advanced and since he does that better than a bottle we will just stick with that.  We are also meeting (getting a second opinion) with his new nutritionist at the end of March.  I want him to be monitored more closely by Nutrition so that we can make sure that someone is always up on how much we are feeding him because right now we are basically doing everything with his feeds on our own, in terms of raising the rate and volume-Bean just needs someone more hands-on.

He has done this weird thing, a handful of times now where he kind of seizes up in our arms, it's a bit disconcerting.  It only happens when we are either holding him or lifting him up from a sitting position to be held.  He gets real stiff and shaky from the waist up, for a few seconds and then is fine and relaxed.  He is not bothered at all by these.  Of course, I just got on YouTube and Nat'l Institute for Neurological Disorders and Stroke and I think it may be Action Myoclonus.  It sounds most like what Bean does and says it is caused by brain damage from lack of oxygen and blood flow to the brain which happened multiple times when he went into cardiac arrest.  I even recall a nurse or two of his saying that he may end up with neurological side effects from all those times that he coded.  Or, I could just be bat-shit crazy and instead of giving up Facebook for Lent give up the whole damn computer altogether.

Oh, speaking of brain function, Ashleigh did a Expressive/Receptive test on Bean Monday night and he is 2 months ahead of his peers in his receptive skills and right on target with his peers in his expressive skills.  Ok, I need to go to bed, it's almost 4 am. :)