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!!

The Start of Something New

The beginning was quite a blur.  I remember many doctors coming and speaking with us.  Sometimes it would be good news and sometimes it was terrible news.  At first we weren’t even able to try to feed him because they weren’t sure if he would be able to take or process food safely, even breast milk.  Seth and I spent a great deal of time sitting together in tears with the full range of emotions cycling through us.  During it all we were there for each other and I am so grateful to have had him with me through it all.  He truly was the only person who was going through exactly what I was as well.  I am amazed that we managed to get through those first few days and somehow still care for Reyna.  I can’t imagine what the very beginning was like for her.  Despite all the upheaval in our lives she amazingly remained flexible and cheerful. 

During the first few days they ran multiple tests in the first two days and we learned a huge volume of information.  The obvious was confirmed, Logan had a severe and atypical cleft lip and palate.  It was wider than normal and parts of his nose did not develop that normally do even with a typical cleft.  An MRI confirmed that he was born without his right eye and his left eye was so severely underdeveloped that it would also have no sight whatsoever.  The MRI also revealed that he had some brain differences.  A large part of his corpus callosum, the pathway between the two hemispheres, did not develop.  He also had some other more minor differences in his brain such as fatty deposits called lipomas.  More frightening they found that part of his brain was protruding through his skull in the forehead area and he would need brain surgery in the next day or so.  As it turns out, this part was an initial misreading of the MRI and Logan thankfully did not need brain surgery at all.  We also got the wonderful news that his heart, lungs, and kidneys all looked great.  In addition, despite differences that often indicate spinal cord defects he had none found. 

As more and more positive news came back they allowed us to begin to very cautiously feed him.  Due to the cleft Logan was unable to naturally breast feed, but I was able to pump milk for him.  It felt so good to be able to do something for him as he lay there so vulnerable in his hospital bed.  At first he ate by drops from a syringe but eventually we began using a special cleft lip and palate bottle with him as he ate more. 

As Logan’s tests were completed one last big question loomed.  Would Logan be able to hear?  Now that we knew he was stable and likely going to survive this question became vital.  It seemed like the last thing, at least at this point in time, that could greatly impact his quality of life.  The first test came back inconclusive and they needed to do a retest.  Then in his bed we found most wonderful card we had ever received.  On a small square of colored cardstock Logan was awarded a shiny star for a passed hearing test.  It was without a doubt the best Christmas present ever.