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. :) 

Bottoms Up!

Ok, so my sweet baby drank from a bottle successfully without aspirating for the first time in his life on Monday, Feb. 28, 2011! Awesome, huh?  And we now get to have speech once a week so we get to keep practicing this neat new trick :)  He has an abnormally high-arched palate so he has to use a pigeon nipple, it's a special kind of nipple that collapses open upon compression and he is getting water, apricot baby food and honey thickener all mixed together.  And he gets to use a normal bottle, not a special Dr. Brown bottle! 

Watching the otters play!

Oh, and today I went and picked up some of his party supplies for his birthday party which is actually going to be at The LIttle Gym of Lake Oswego, not the Play Boutique because they never responded.

Still watching the huge Sturgeon, lol...

Another fun otter one

My silly Rob <3

My lovely family <3

Can you see that tawny patch right above Bean's head behind the fence? That is their male cougar!  Cool, huh?

There he is!  He is also the father of the 4 month old baby they have there.

I dont think you can see how close I am to this baboon.  I am literally just separated by 3 ft and the glass window.

Watching them I felt like I was in the middle of the freakin' Lion King lol

Aren't they neat?!?!

 Oh, here are the rest of the pictures from the zoo! :)

Vomiting Blood



Bean watching the otters play :)



Hi, all, ok sorry it's been so long but we have been busy--VERY BUSY.  We went to the zoo and I will post some pictures later but Bean loved it and he loved the fish, the river otters, the cougar and the bears. 

He started throwing up old blood then he started throwing up almost pure coffee grounds and fresh blood.  Not good.  got it under control with medicine thank God. had a bit of a superficial tear in esophagus we are assuming.  anyway, m ore details later but he is doing great and growing like a weed.

Bean loving the giant Sturgeon!





Cuss Bucket

Bean, Jan. 2011

So, Bean mimics his Dad now...He won't copy me but when his dad makes sounds at him, Bean laughs a real deep belly laugh and makes the same noise back, it is freaking hilarious.  There's the awesome Pterodactyl sound that Bean is a big fan of, it's sort of a cross between James Brown and the shrill cry of a hawk, lol and we've been trying to get him to say "book", "dad" and "mom" as I would prefer that my son not present to his kindergarten class the same colorful vocabulary that we enjoy in our household, so this means only one thing: We've got to start watching our mouths.  How though, after years upon years of speaking and cussing with abandon, do two verbally expressive adults give their language a toddler-friendly makeover?  Perhaps a cuss bucket, 25 cents here or there for every profane utterance?  If we do this, Bean will have his college paid for in spades by the time he's five.  Although, I have serious doubts that anything less than a shock collar will G-rate our language.

Oh, something else I forgot to add about Bean's Neuro appt.  For fine motor skills he is at the level of a three month old and for gross motor a four month old.  Which is to be expected when you miss out on the first 4 months of your life.

He is, as I type this, in his bounce, bouncing up and down as hard as he can it's so funny=)  We are getting ready to go to the zoo, gotta go=)

Gimme a Five, Up High...

Ok, so Bean had PT on Thursday and it was the cutest thing-Jennifer taught Bean how to do a high five!  It's fun.  Also, he is rolling over more now but he can't seem to bypass his arm; I'm not sure if he is strong enough yet to pull it out from underneathe himself. 

On Wednesday I went to the Sellwood Library to read to the therapy dogs.  It;s a program run by a teacher of blind children to help kids become more comfortable reading out loud, so he lets kids come in and read out loud to his therapy dogs in thrity minute increments.  It was really cool.  I'm taking Bean in the summer so we can read to the dogs together:) 

This lady Sara, who frequents Twin Paradox, always brings her big dogs Sadie and Violet inside and Sadie kissed him on the face one time lol.  On Tuesday at Twin Paradox Violet came up to see me and Bean and she kissed him right on the face it was so cute.



Bean going on a walk with Rob and I, Jan. 2011

Update from the Neurodevelopmental Side of Things...

Hi, everyone!  We had a good visit with Kirti (his Nutritionist), Jennifer (his Physical Therapist) and Dr. Sacks (Neurodevelopmental Pediatrician).  He is 14 lbs 5.5 oz!:)  Awesome, huh?  According to his pediatrician's measurements he was 26 inches but according to Kirti's he is 25 and 3/4th inches.  Hers is more accurate.  So, he is in the 75% for height, 50% for weight (I think half of that is in his chubby cheeks=) and 75% for head circumference.  Yay! 

Dr. Sacks did not see any signs of cerebral palsey or permanent developmental delays.  We have to go buy a "First Years" chair for him so that everything we do we can integrate him into it.  The chair is like a giant Bumbo.  It totally supports them while they sit upright.  So, while we're doing the dishes we can sit him in the kitchen with us and give him a cup to play with or while we're doing laundry we can give him an item of clothing to play with, this chair makes doing things more comfortable for him this way he will be able to develop the way he should instead of favoring his right side, since his left side is weaker and he tends not to use it.  This supports him.  She also wants us to break up his day feed but I'm going to ask Jennifer about it tomorrow because I dont really understand why or how this is going to be possible because functionally it just does not sound like a good idea.

Also, does anyone have any good suggestions for keeping the sun out of a baby's eyes?  My poor child, lol, he has become accustomed, unfortunately, to Oregon's shitty weather and now squints and whines whenever the sun hits him.  I think my mom used to use a red babseball hat on me and Rob said he had a sun hat and Bean had received a REALLY cute pair of black sunglasses with blue paw prints on them but they were WAY too small for his big ol' noggin'.  Also, when he is in the back seat and the sun is shining on him sometimes the shade on top of his car seat does not shade his little eyes.  Do I get one of those transparent shade things to put on the back window?  Oh, and Dr. Sacks said Bean is a "Sweetie Pie". He really is one of the sweetest kids in the whole world. 

Oh, my gosh, so Bean and I had coffee with Anglie, one of our favorite nurses from the NICU and Angie is the Team Captain for the NICU March for Babies Team at St. Vincent's and since Bean is the 2011 Ambassador we are gonna go to the March for Babies kick off for team captains at the Oregon Zoo (in one of the meeting rooms) to get more fund raising things and just to really get a good feel for everything so that we can be totally informed on everything and be the best Ambassadors we can be.  Bean and I are going to start putting up flyers and pamphlets and stuff so I'm really excited about that.  I can also pretty much do anything to raise money, bake sales, car wash, anything.  Anyway, coffee was really fun and I got a great picture of Angie and Bean.

Ok, well I have to go get my taxes done.  Have a great day, everyone!

Bean & Angie, Feb. 1, 2011 at Twin Paradox Coffee

Birthday Cakes, Ambassadorship, Neurodevelopmental Health & More=)

Okie dokie, Bean's sleeping right now so I may have to cut this short.  His 1st birthday is coming up and I AM SO EXCITED.  I cannot believe my baby is almost a year old.  So, I literally have no idea what is appropriate for a 1 year olds' birthday part but I've got a few ideas.  The one thing that keeps plaguing me is...THE CAKE.  Ever since I found out I was pregnant I've imagined my baby celebrating his or her first birthday with their very own cake to smash into, smush all over their face and just make a mess.  My neice Samantha, who is now 21 (oh, wow, I'm old), I vividly remember her 1st birthday party at the park and she had her own cake and sat on top of the table and just got it everywhere.  I've always wanted to do that.  However, Bean isn't quite yet at the stage where he can start shoving cake in his mouth, lol, so I've been mulling over ideas for a cake.  Should I get a bunch of his favorite flavored baby food, Peach Cobbler and just dump a whole mound of it on a paper plate and say,"Have at it"?  That doesn't seem very...celebratory to me.  But I mean, he doesn't really have a lot of options, here.  Also, and oh my gosh this was so funny, last night the three of us went to Barnes & Noble to hang out (i.e., escape our hermit lifestyle for a hour) and on the way there we went to Mike's Drive In which has become my new guilty pleasure because I really wanted a soft serve vanilla ice cream cone.  I sit in the back with Bean whenever the three of us go anywhere and on the way to B & N, I looked at my son, looked at my ice cream and thought, Why the hell not?  So, I put the ice cream up to his mouth and he totally loved it!  It was super cute and really neat :)  So, that brings me to my next idea for a Bean-friendly birthday cake: Should I get s soft serve vanilla ice cream cone and stick a "1" candle in it?  I could put soft icing around it for him, too.  I gotta think on this one.

For thos eof you that don't know, my Bean has been chosen by the Providence St. Vincent's  March for Babies team as its Team Ambassador :)  The event is on April 30th and the funds raised go towards research to help prevent premature births and birth defects and to provide education and support for families with babies in the NICU.  Here is a link to our page.

http://www.marchforbabies.org/leescuba43

From my page you can click onto our team's page. 



Bean, Jan. 2011



Oh, ok, so Wednesday Bean has his first-ever appointment with his neurodevelopmental pediatrician.  We've never met her before and I am very anxious for this appointment.  It is a very long visit, where she will assess Bean to see where exactly he is at in terms of development.  I'm always a bit anxious for these appointments because I get very defensive about Bean and when professionals who've NEVER met him before start making assumptions or asking (what seem to me) stupid questions it really bothers, annoys and offends me.  However, I heard Dr. Sacks is really great and I am looking forward to her assessment.  I'll let you guys know as soon as possible what she says.





Welcome Back!

Robert William Leatherbury
First minutes of life
 May 19, 2011

It’s been a while, I know, since you’ve received any electronic updates on Bean but since he’s come home Rob and I have been operating off of caffeine and little sleep=) Also, his Providence CarePage goes on the fritz often and who has time to deal with that? So, I’ve created this blog for my son, Robert William Leatherbury aka “The Bean”, who was born on Wednesday, May 19th, 2010 at 3:49 pm at 2 lbs 13 oz, 15 inches long.  Shortly after birth he went into respiratory failure and required resuscitation.  Robert was born with a Type A pure esophageal atresia (his esophagus ended in a blind pouch just above his collar bone and was growing up out of his diaphragm into the remains of the dead tissue of what was supposed to be his left lung).  Basically, he was born without an esophagus.  He was also born with agenesis of the left bronchi and not much else in the way of a left lung, meaning he had a tiny jagged portion of lung tissue without anything connecting it to his trachea, kind of just floating in the left chest cavity. In laymen’s terms, he was born with no left lung.  Robert is also missing the first metacarpal of his left hand:  Hold your hand out in front of you-do you see that straight bone that kind of points diagonally, the one that attaches your thumb to your wrist?  My Bean does not have that bone.  His right thumb is totally functional and may even be double-jointed.  He was so tiny when he was born that they had to wrap him in plastic to keep him from losing his electrolytes.  He also received phototherapy to bring down his bilirubin (to help his liver).  The phototherapy lights look like a gigantic black light, shooting out purple rays.  The babies have to wear black eye masks to protect their eyes.  When bilirubin levels get too high it can cause brain damage.   This is called kernicterus. 

At the beginning of June, a geneticist named Dr. Wildin came to see Bean.  Due to the severity and nature of his birth defects, it was suspected that a genetic component played a part.  We were told that he may have “this” or he may have “that”.  At the end of Dr. Wildin’s consultation he told me he was testing Bean for Fanconi Anemia, a disease of the blood that causes Acute Myeloid Leukemia.  The average onset occurring between the victim’s 7^th and 12^th year of life, average life span approximately 8 years after onset if the patient does not receive a bone marrow transplant.  Needless to say, we were devastated.  Thank the Lord, after 6 long weeks the results came back negative.  He was also given a microarray test, another type of genetic testing to see if there were any deletions or duplications in his genes.  There were not.

Between June 10^th and July 7^th, 2010 Bean went through three surgeries in which the two ends of his esophagus were attached to sutures that exited his body through his left side.  Stilets were attached to these sutures and every other day a surgeon would come into the NICU and crank the sutures tighter and tighter.  This stretched his esophagus to the point where it was able to be connected.  This process was incredibly excruciating for my son; a Morphine drip was put in place for pain management and my son became addicted to narcotics at the age of three weeks.  After the connection was made he was in a medically-induced paralysis for 10 days to minimize the risk of his new esophagus popping open. 

After the connection was made he was given breast milk for the first time with a bottle.  Unfortunately, he aspirated the milk into his lungs, causing aspirate pneumonia.  After some pretty gnarly antibiotics the pneumonia was resolved, however, the drugs, along with killing all the bad bacteria, also destroyed all the good bacteria and he ended up with a yeast infection in his lungs, another form of pneumonia.  He began crashing, meaning his SATs were dropping and his heart was unable to oxygenate his little body.  He went into cardiac arrest multiple times and we almost lost him during these episodes.  No one could figure out why he was crashing so often and was literally one day away from getting a tracheotomy when they ordered an ECHO to take a look at his heart.  He had a Patent Ductus Arteriosis (PDA) that had gotten considerably larger since birth and was causing horrendous pulmonary hypertension which was making him crash.  A PDA is an opening between tubes coming off of the heart.  They typically close 8 hours after birth but in some kids they do not.  Bean had an uneventful PDA ligation (surgery in which the PDA is closed) and was placed back on a ventilator.  He was back on Ativan for pain.  His pulmonary hypertension persisted and he was placed on a drug to help combat it.  We were faced with the possibility that the drug may not work and that he would go into heart failure.  Thank God, after a couple of weeks a follow up ECHO showed that the pulmonary hypertension resolved itself. 

He did not move and was not completely coherent from June 10^th to the beginning of September.  He was on a ventilator for the majority of this time which caused chronic lung disease.  He was also on Total Parenteral Nutrition (TPN) meaning 100% of his nutrition came from tubes and bags that went through IVs that were in his feet, hands and scalp.  This caused liver disease. 

At the beginning of September he began receiving breast milk through his NJ tube (nasal-jejunal tube).  He was slowly weaned off of TPN and his liver function improved drastically. We were so happyJ.  On Monday, September 27^th, 2010, one day after my 30^th birthday and four months and eight days after Bean was born, our baby came home to live with us.  It has been wonderful.

He came home with receiving all of his nutrition through his NJ tube.  The tube used to come out ALL the time and it had to get put back in at the hospital.  Needless to say the people in radiology began to recognize us on sightJ  At the beginning of November they took his NJ tube out and he began receiving all of his all of his food through his g-tube.  On Dec. 30, 2010 he underwent a swallow study and passed with flying colors.  On Jan. 6^th, 2011 he began eating real baby food by mouth for the first time ever. J

Robert William Leatherbury
Almost 7 months old :)
January 10, 2011

Things are going great. Stay tuned for more Bean news.