Monday, May 28, 2012

Growth Hormone Deficiency

While Logan was still in the NICU he had several tests run by a pediatric endocrinologist since mid-line defects like Logan's often include endocrine system defects as well.  All of Logan's tests came back prior to his discharge from the hospital except his growth hormone tests.  Since the rest were all normal we were told his growth hormone tests should also come back normal.  The doctor felt this was especially likely since his thyroid tests were all normal and growth hormone deficiency correlates with thyroid hormone issues as well.  As would continue as the pattern for Logan, if a doctor stresses how unlikely something is or how minute the percentage of chance, Logan will defeat the odds.  His growth hormone measurement actually came back so low it was not in the measurable range.  It was so low in fact his endocrinologist had us do a retest as he felt there was a good chance the result was an error.  In Logan style it was not an error and came back just as low upon the second test.  Logan has growth hormone deficiency.  He will have a shot six days a week at least until he is fully grown and likely for the rest of his life.  Logan's thyroid was retested to ensure it was still normal and it thankfully it was.  This is just the way Logan rolls.  He is our one in a million (or billion) and he likes to keep his doctors on their toes and rubbing their brows.  (Seth and I have seen literal brow rubbing countless times.  It is always very reassuring.)

Unique...

...and adored.

Sunday, May 27, 2012

Conformers

Early on we were informed that Logan would need conformers in his eye sockets to help them grow more naturally.  These would also allow him to one day have prosthetic eyes. In the beginning Logan's conformers would not stay in without being wrapped or bandaged.  The bandaging was hard on his skin and difficult to keep in place.  We were told that this would only be for a short time, but after several months we requested a second opinion from another ocularist.  His new ocularist was able to immediately fit him in conformers which would remain in on their own.  This worked for quite some time.  Unfortunately at this point Logan is able to easily remove his conformers and still has had little growth on his right side.  We are currently working this his ocularist to find what will work best at this point.





The photos below show the his first set of conformers which stayed in on their own.  
They have the small stems sticking out to make them easier to put in and remove.





Reyna's Second Birthday

For Reyna's second birthday we celebrated by going to the museum and having a small family celebration at home.  It was a great day!














Logan's School

Logan began attending a local school for blind children when he was only two months old.  The school serves children from birth to age five.  We are deeply grateful for his teachers and the services provided by this remarkable school. At this time Logan attends the infant program twice a week.  Parents attend the infant program with their child where they learn education and therapy techniques from vision specialists, physical therapists, occupational therapists, speech therapists as well as other early intervention specialists.  These individuals also work with Logan during his sessions.  His favorites are music therapy and the motor room but he usually loves it all.

Logan received this texture quilt on his first day of school

Logan in an exploration center at school.  
These are often called "little rooms."  

This is his "little room" at home.  We were given
the materials to build it from his school.

Exploring at school
With Daddy at school

One of Logan's favorite items at school

Tell us how you really feel...




The screaming in the first four months was unbelievable.  With all that champion screaming I am surprised Logan didn’t find a way to be heard in utero.  Perhaps giving me seven weeks of contractions was his way of screaming at me.  If you love those cute little newborn cries and are picturing those think again.  His large cleft allowed him to scream extra loud and with the volume and tone of an angry twelve year month old.  Through all the screams we did our best to understand why he was screaming and with the many factors he was dealing with the distress made sense.  We also consulted doctors and therapists to rule out any medical factors.  

Logan at the first of many hospital visits

Logan after being admitted to the PICU for a severe cold.
In the beginning his little body could not handle even
common ailments well.
Logan having a sleep study
Being blind made most everything in his new world a surprise.  Eating was hard and sleeping was harder.  Without light and dark to help him determine day and night it was a huge challenge to get him into a sleeping pattern.  As a result he was tired and very disgruntled with the world.  He was also diagnosed with severe acid reflux and had a typical medication started.  It wasn’t until a second medication was added to the first that he began to seem to have relief for this issue.  Through a swallow study we also learned that Logan needed his liquids thickened to prevent aspiration.  Despite our deep sympathy for Logan and all he was dealing with the constant screaming was still quite stressful for all.  In the first month Reyna had a really difficult time adjusting to this new little person who if awake could pretty much be counted on to be screaming.  For a child who rarely ever screamed or even cry very often I can’t imagine what it was like to have a new miniture being in her world that screamed with nearly every breath.  I don’t doubt that she began to view all of her baby dolls as imposters of reality.  As a result of the crying she began covering her ears and often crying and even screaming herself, clearly overwhelmed.  This first month was probably the hardest month of my life, likely all of our lives.  It was heartbreaking to see your firstborn so clearly distressed by her new sibling and your newborn in such obvious distress as well.  Soon Reyna got used to the screaming and seemed able to ignore it.  Amazingly throughout it all, even when she was bothered, she remained kind and gentle toward Logan.  She still wanted to give him kisses, help care for him and she never, ever hurt him. 

Sibling Love
Thankfully we gradually learned little tricks to help and Logan seemed to become more comfortable with the world that once seemed to torture him so.  Giving cues to Logan when we were about to move or feed him helped.  Treating the reflux made a big difference too.  In addition to the reflux medication, sleeping in an incline bed (The Fisher-Price Newborn Rock and Play Sleeper) also helped greatly.  However, it wasn't until we learned a way to help him know it was time to sleep that he became a content and even cheerful baby.  (Who knew that not only could his cleft make extra big screams but also the most heartwarming extra large smile!) Although we had kept a consistent bedtime routine for a while complete with a bath, lavender lotion, a heartbeat sound bear, being fanned with exotic leaves and so on, none of this really worked.  The breakthrough in the end was quite surprising.  If Logan’s feet were bare all day and only covered at night by footed pajamas he would sleep at night.  As soon as we began this he started sleeping through the night every night.  We kept the other parts of his routine as well, but this was the miraculous key to dreamland.  He may have looked like a hobo by day but it was remarkable to watch his little body relax as you slid his feet into the pajamas after remaining bare.  It took four months to discover, but once we did the whole family was happy again and stopped looking like sleep deprived zombies.

Truly bonding

A very content Logan



Sunday, May 20, 2012

Family Love

Shortly after Logan arrived home we had a visit from his Grampy and Grammy (and their two sweet pups).  It was so special for them to meet Logan and spend time visiting with Reyna too.







Following a very sad goodbye "Boompa" and "Guppie" (Grandpa and Grandma) came for a visit next and were able to meet Logan as well.





Saturday, May 19, 2012

Homecoming


Now that Logan was found to be stable and overall quite healthy his last goal to leave the hospital was to eat.  The eating requirements to leave the NICU were understandably pretty steep.  We were both determined to do this one thing for Logan and we worked very hard to get him home.  This meant pumping milk for half an hour then working hard to learn and feed him with the special bottle, sleeping for about two hours and waking up to do it again. 

Seth feeding Logan with a Haberman bottle.  In the end the
Mead-Johnson Cleft Lip/Palate Nurser worked best for Logan.
Throughout Logan’s stay we were graciously given a boarding room at the hospital.  In the beginning Seth and I took turns being home with Reyna and being at the hospital but it was too challenging to get enough milk ready to leave behind for a whole night without me.  Also in the beginning Logan was eating much better for me than Seth and not at all for the nurses.  It became up to me to get him home.  Seth would bring Reyna each day for a visit and would spend time with Logan as I treasured a bit of time with her.  We were also determined to do our best to avoid a surgically placed feeding tube for Logan.  With all he was dealing with already, we wanted to make the things we could as “typical” as possible for Logan.  We also knew with blindness food can be a wonderful sensory experience.  After 11 days Logan came home from the NICU.  He came home on the very first day of 2011.  Having our whole family home together was an incredible way to start the new year. 

Packing up to leave

Logan's last day in the NICU (for now) January 1st

Home!!