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.

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.

You're Nearly Half Way There...Now Go Home

Due to his large size and breech position Logan was scheduled for a C-Section on his Daddy’s birthday.  However, he decided to pick his own day and came a bit earlier.  Two days prior to his birth I was having fairly good contractions and I was up until past three in the morning.  It was not only the contractions that were keeping me up but also the feeling that Logan was bucking his legs like a rabbit when trying to escape.  The last thing I remember before dozing off is my stomach looking strangely wide and warped as though Logan was squeezed in sideways. 

In the morning my stomach looked back to the way it had for a while.  I felt pretty confident that Logan had been working hard to turn head down, but I wasn’t certain if after making it halfway he succeeded or gave up and turned back upright.  I called the doctor, sharing that I though he may have turned and they were able to do a quick sonogram to check.  Luckily he had turned so I could now have a vaginal birth.  I felt pretty sure this was good news, but the thought of a ten pound baby was still quite daunting. 

I began having painful contractions again that day so we headed to the hospital, again.  They checked me and I was dilated four centimeters and was having regular contractions.  Sounded like a prime time for a baby to me but THEY SENT ME HOME.  I was pretty pissed at this because of how far along things seemed to be and my apparent challenge in determining if I was in true labor.  Oh, and yeah, I was a high risk pregnancy as well.  Sounded like a grand idea to send me home!

The next day I continued having bad contractions and called my clinic.  They had me come in to the clinic and hooked me up to the monitors.  As I had been for seven weeks, I was showing labor contractions but since I had remained at four centimeters they told me to go home and wait until the pain was just a bit more and then go to the hospital.  I went home and did my best to rest, pretty confident that this was it.  I soon had contractions so bad they woke me from my nap and we went to the hospital.  I was still at four centimeters and ready to strangle the first person who told me I was going home, but they told me my own doctor was the one at the hospital tonight and he wanted me to be admitted.  I was so relieved and found the hospital bracelet to be the loveliest piece of jewelry I had worn in quite some time.  

Reyna chilling in the room we were finally granted.
She was totally prepared to throw things on
my behalf if we didn't get it immediately.

Not Quite Right

Remarkably over the next few months I was able to stay fairly calm.  At times I would be overwhelmed with worry, but usually I could take myself back to the sonogram.  I would remember how they saw distinct fingers, a normal looking heart, two hemispheres in his brain, and several other promising “normal” features.  I was also able to find comfort in doing all I could to prepare.  We even met with one of the three possible doctors who could perform his cleft repair while I was still pregnant.  He thought this odd and mentioned (more than once) that it was not typical to meet with parents prior to surgery. We were very glad we did because we were not pleased with this doctor due to his seemingly arrogant attitude.  Even though he seemed quite capable we requested a switch due to this experience.  We were able to choose a new surgeon prior to his birth and are so grateful for the choice we made.  His plastic surgeon is amazing!  We also learned about various treatment options, long term and immediate needs, and specialized feeding tools.  All of this helped us feel more prepared.

We had two additional, high resolution 3D sonograms with the perinatologist and things continued to look promising.  The two follow up sonograms were completed much faster but I pushed for them to look closer.  They obliged slightly, but mostly brushed off my requests saying that the first sonogram checked Logan well and they are still seeing normal development.  They looked at the major features, but the details weren’t as closely examined.  At these sonograms Logan’s size was also beginning to be predicted.  It looked as though he would be quite large with a predicted weight of around ten pounds.  My stomach measurements were also measuring on the larger side.  This was a bit odd because Reyna was only six pounds, thirteen ounces but larger babies had been born on Seth’s side of the family so it seemed possible.  There was also of course the consideration I had in my own mind that the original due date was more accurate which would throw off the size for gestation a bit.

My Extra Big Tummy

In addition to Logan’s larger size, there began to be some other oddities that started to increase my worry again.  Around thirty weeks I began to have regular contractions.  These were not the practice contractions that are normal.  These were typically three to five minutes apart and every time they hooked me up the monitor I appeared to be in full labor.  Thankfully however, when they would check internally I would show very little progression toward labor.  Twice I was given medication to prevent preterm labor but as little was changing I was able to continue with my daily tasks and work.  Many of the contractions would be uncomfortable but not terrible painful.  However, at times they were identical to my experience of going into labor with Reyna so it was very challenging to determine when I needed to go into the hospital.  We visited several times before the real thing and I was getting very frustrated by the thought of not being sure when it was “real.”  I was embarrassed to keep going in when it wasn’t needed, but at the same time worried I would ignore true labor. 

In addition to these early contractions Logan remained in breech position up until two days before labor.  I know that this can be typical, especially with a larger baby, but for me it just felt like one more thing that was not quite right in the pregnancy.  The (mostly) internal calm I was able to maintain earlier in the pregnancy began to break down at this point.  I think it was partly due to the delivery approaching and partly due to the instinctual feeling things weren’t quite right.  On the surface I was able to remain functional and calm, but inside I was full of worry.  Despite this worry, I was greatly looking forward to meeting little Logan.

Reyna enjoying a precious moment with Daddy
as Logan's arrival approached

The Unexpected Call...

Around twenty weeks into the pregnancy I had my next ultrasound.  Seth and I were extremely excited to see our baby and discover if we were having a baby girl or boy.  Just as it was with Reyna it was a thrill to see our baby moving around and looking healthy.  We learned we were having a boy and were excited Reyna would have a little brother.  We loved seeing his tiny hands and feet.  It was such a joy watching him move around and hearing his strong heartbeat.  Not a word was said during our sonogram to indicate that something may be wrong and we left filled with happy anticipation for our little boy.

A couple of days later we got that unexpected call and it was heart wrenching.  I received a call that our baby likely had a cleft lip and possibly palate.  Although this was overwhelming in itself, I took a deep breath and thought how we could get through this and do whatever was needed for our little guy.  However, when the doctor continued on with explanations that the cleft made it more likely that our baby could have an associated syndrome or other birth defects it became increasingly more difficult to hold it together.  She explained that we should see a genetic counselor and a perinatologist. 

After getting off the phone I did fall apart as I explained the news to Seth.  He stayed pretty strong, but I could see worry on his face which is rare.  Gradually it sunk in and we were able to think more clearly.  We then focused with determination to educate ourselves and do all we could to help our baby have the best care and life possible.  We found several great websites such as cleftline.org.  Several sites were reassuring while others increased my concern exponentially.  However, in the end, for me at least, these sites helped me relieve some of the anxiety as they allowed me to feel I was doing something by learning all I could. 

A few days later we had our appointments.  We first saw the genetic counselor.  She made a genetic histogram of our family which showed no indication of a genetic link to cleft lip and palate.  She then shared the frightening and ridiculously wide statistics that with a bilateral cleft our baby could have anywhere from a 15-60% chance of having associated syndromes, depending on the study.  She shared testing options but we declined as we did not want to put our baby at risk for further problems and risk losing him.  We had already made the decision we would continue the pregnancy no matter the outcome.

We then had the 3D ultrasound which clearly showed a bilateral cleft lip.  In the sonogram his cleft was so severe it looked almost beak like.  When we asked about this they told us it wouldn’t really look that way.  When Logan was born it looked exactly like that, but I still instantly fell in love with him and found him beautiful.  I know to others his features were alarming but truly I did not see him this way.  I can understand why they did not think it would look as it did in the sonogram as Logan’s cleft ended up being quite atypical.

Logan's First 3D Sonogram

The sonogram also showed that there was very likely a cleft palate.  However, as they closely inspected and measured the rest of his body all looked well.  This was very reassuring.  After the sonogram we met with the genetic counselor again and she shared that although there are not specific statistics, the likelihood that Logan had other issues was greatly diminished by the number of typical features viewed.  This gave us increased hope that all would be well once we had his lip and palate repaired.  

Look Kids! Holland!!

If you are a parent of a child with special needs or are in connection with the special needs community you have probably been given the poem “Welcome to Holland” at least a few (dozen) times. It is with certainty that I feel this poem is given out of love and support even though it doesn’t always feel so warm and fuzzy if you are living it.  If you have not had the opportunity to read this poem it can be found on multiple sites including http://www.our-kids.org/Archives/Holland.html
  The first time I read this lovely poem by Emily Perl Kingsley was during one of my special education classes in college.  When I read it I cried.  It was so moving, touching, loving…  After the birth of our son I was given this poem again.  Again, I cried.  However this time I was not crying because I felt moved or even at one with the author.  I cried out of guilt that I couldn’t even imagine being grateful to be in “Holland”.  I was grateful for my son, deeply so, but I was devastated at the loss of “Italy” not just for myself and our family but especially for Logan.  He deserved to be in Italy and even Holland seemed far too lovely with its windmills and tulips to be the equivalent to all he was facing.   Over time, as I was given this poem periodically, it became easier to read and I was able to feel some connection of experience.  Through a more recent discovery of the blogs of several individuals who are also parents of special needs children I have felt even more real, raw connections with others who have found themselves in similar, yet individually unique, circumstances.  Upon a blog written by Dana Nieder (uncommonfeedback@gmail.com) I found her modified version of “Welcome to Holland” entitled “Amsterdam International.”  It can be found at http://niederfamily.blogspot.com/2010/10/amsterdam-international.html .   This depiction sounded much more like our experience and alleviated much of the guilt for not being able to appreciate “Holland” after Logan’s birth.  The courageous stories of others have been such a gift.  I have loved reading the unique journeys of several individuals and families who have embraced a child with special needs.  I have learned so much from them.  It is my hope that I can give others even one bit of what I have gained from so many courageous writers.  I also hope that this can serve as a celebration of the lives of our two children.
Whether we are in Holland or still stuck in the airport, we’re there.  When I think about such a deviated trip I cannot help think of the not so famed wonders of the world.  I kind of imagine it like taking your kids on a trip to see the world’s largest ball of twine.  You wish you could have taken them somewhere grand like the Eiffel Tower but for whatever reasons you could not.  However, even though you know the world’s largest ball of twine is not the prized destination of anyone, you do your best to help your kids enjoy the trip.  You mask any disappointment and shout out as though it is the best thing you have laid eyes on, “Look kids!  The World’s Largest Ball of Twine!”  You do your best to make this experience live up to those you know their friends and classmates will be talking about one day.  You finally get everyone out of the car for the full effect.  You do your best to gain the most memorable, meaningful experience you can get out of twine because it is what you’ve got and you are going to make it damn amazing if it kills you. There will be eye rolling and questions of why so and so got to go to anywhere but here France, but there is nothing you can do to change this destination.  (Lucky for us our kids are too young to yet to make such a fuss so hopefully we can convince them of the wonderful qualities of twine by then…)   Along the way you will find that on such a journey you will have unique, unexpected and cherished memories even though parts of the trip were much harder than the well planned, predictable AAA vacation.  Only those along for the trip will fully understand your journey giving you something so special to share between you.  You will also meet others who have had similar journeys.  Those who can share a laugh or cry, swap stories with you and provide travel tips.  So here we go kids.  Holland!  Sure beats the hell out of twine right?