Dreaming in Color

Monday, January 31, 2011

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.


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.

Saturday, January 29, 2011

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 7th and 12th 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 10th and July 7th, 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 10th 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 27th, 2010, one day after my 30th 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. 6th, 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.