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Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts

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!!




Christmas 2010

Christmas was by far one of the hardest days with Logan was still in the hospital.  We did not want to be away from him for one moment of time but also wanted our daughter to have the opportunity to celebrate Christmas in her own home with both her parents.  After being shuttled back in forth from the hospital daily and never having the two of us at home at once since Logan's birth, it broke our hearts to think of her spending Christmas in the hospital or with only one of her parents.  However it was also heart wrenching to think Logan would be without us at the hospital.  In the end his nurse convinced us that they would be sure to give him extra love and attention and we should spend the morning at home.  As the care in the NICU had been nothing but impeccable we were able to be convinced and spend a few hours at home together followed by a reunion as a complete family at the hospital.  Christmas day was the last day Reyna was allowed in the NICU (due to winter age restrictions) so we really enjoyed this time all together.









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.




Logan's Arrival


My labor with Logan progressed steadily and things seemed to be going smoothly.  Yet when they broke my water they noted that I had Polyhydramnios which is too much amniotic fluid.  Despite all my specialized sonograms this had not been previously noted and of course added to my worry.  Almost immediately after breaking my water I was pushing.  Suddenly many people joined the room since Logan was at high risk and would likely need to go to the NICU.  The pain was excruciating and notably different from that of Reyna’s labor.  I, who was determined she’d never be that lady screaming at the top of her lungs, was likely scaring every expectant mother in the entire state hospital.  The whole room seemed a whirl and I remember Reyna, for whom we had no one to watch, being taken in and out by kind nurses and Seth turning sheet white and nearly passing out.  Thankfully the nurses had him sit and drink some juice and he was okay.  He later shared he thought he was going to lose me or the baby or maybe even both.  With the level of pain in that moment I would have agreed with him.  At the time I thought the reason it was so bad was because of the prediction that Logan would be around ten pounds.  As it turned out Logan was only seven pounds two ounces.  The pushing was so difficult because his soft spots, which normally help the head mold during birth, were fused.  We didn’t know this until later but other differences were immediately noted. 
Logan cried a nice loud cry immediately and it was the best sound in the world.  He was bright and pink and had Apgar scores that rivaled his clearly healthy sister.  Due to this immediate positive look they allowed me to hold Logan.  As I embraced him I took him in and despite his obvious large cleft he was precious to me instantly.  As I began to look at the details of his features I started to be washed with worry.  I noticed his ears had skin tags all around them and then immediately after noticed this I saw he was not opening his eyes.  This realization was one of the most defining moments in my life.  Everything seemed to stop for a moment in time and then I was filled with panic.  I alerted the nurse to this realization and Logan was immediately swept from my arms. 
Seth and Reyna were able to go with Logan, but I was left overcome with anxiety for my little baby.  As they completed my extensive stitches all I could think about was the possibility I may not see Logan alive again.  I wanted to jump up out of the bed and run to the NICU.  Seth soon came back to let me know Logan continued to be stable.  Just a bit later I was able to join them in the NICU where I saw my sweet baby hooked up to various devices.  As we had done research on the possible outcomes I was prepared for what I may see in the NICU but it was still hard to see Logan that way.  I was so grateful to see he was alive and deeply thankful to be his mom.