Avery Rose Hughes

I'm not exactly sure where to begin, so I guess the facts first:

Avery Rose Hughes was born on August 6, 2011 at 3:50am.  She weighed 5.1 oz and was 6 1/2 inches long.  She was 18 weeks old.

Avery's story began back in May when we found out we were expecting again.  We were so excited!  Katherine and Caroline couldn't wait to have a new little sibling.  Katherine insisted from day 1 that this little one was a girl and that her name was Rose.  I remember her driving home from dance with me one day and saying "Mommy, I know what our new baby's name is.  Rose. Isn't that pretty?"  At the time I was like Rose, really?  But in the end it seemed pretty fitting since she was in fact very delicate and small, much like a rose.  Anyway, we also found out about the same time that my cousin, Kim and her husband are expecting their first baby about a week before Avery's due date of January 2, 2012.  Her due date is Christmas Day 2011.  We were over the moon that we could go through this experience together.  What an amazing thing!

The first week or so were just like my other pregnancies with really no symptoms.  I really couldn't believe I was pregnant, but I was!  After the first week or two, I started getting really nauseous at very random times.  Nothing was consistent and even foods affected me differently at different times.  For instance one day the thought of Orange Juice made me want to curl up and die and the next day that is all I wanted to eat.  Very strange.  I had a feeling then, that something wasn't "right" with this baby.  I mentioned these fears to Chris and he of course reassured me that I had felt similar feelings with the girls and they were perfectly fine.  I really thought that I was just having an over-active imagination or Mommy worry.  So I tried really hard to suppress the dread I felt that something was wrong.  I started praying then for this little one growing inside me to be perfectly and fearfully made in the Lord. 

Over the next few months, nothing seemed to change all that much.  I did get a belly around 11 or 12 weeks and ended up in maternity clothes then.  This was WAY earlier than with either of my first two girls.  I thought, holy cow, this baby is going to be huge!  :)  I had my 12 week doctor appointment and at that appointment they couldn't find the heartbeat.  This scared the living daylights out of me, but my OB quickly took me into ultrasound and confirmed that there was a heartbeat.  He reassured me that before 13 or 14 weeks it is sometimes hard to hear a heartbeat via the doppler.  I got to bring home two ultrasound images of our little one.  That made me excited, but at the same time, I was a little more anxious.  I remember Dr. A always being able to find the heartbeat of Katherine and Caroline and usually super quickly.  Just another thing added to my dread factor that something was wrong.  Four more weeks passed and by this point I was 16 weeks along.  I was getting excited because the long awaited 18-20 week ultrasound was finally approaching where we could find out the gender!!  The day before my 16 week appointment I went in for routine blood work called a PENTA screening.  This screening tests for the likelihood of a neural tube defect, Trisomy 18 and Downs Syndrome.  The following day I went in for my 16 week visit with Dr. A and again he had trouble find any heartbeat.  After a lot of pushing around on my stomach he was finally able to find a heartbeat, but to me it sounded much slower than that of my girls.  I thought to myself "Ok, either something is wrong here or maybe it's a boy?"  Dr. A reassured me that this is still pretty early and not to get worried because if the baby was in a certain position it is very hard to hear the heartbeat.  I left his office with an ultrasound scheduled for August 1 and a follow up exam scheduled for August 16th in his office.  I was counting down the hours until August 1!  I could not wait to see if we were going to have another little girl or a little boy! 

On July 26th I was sitting on the couch around 3:30pm and I was actually looking at a website for baby names.  My dread during this whole pregnancy had prevented me from even thinking about names, much less looking some up?!  I remember sitting on the couch and thinking "Wow, everything must be ok, because today is the first day of my pregnancy that I have not worried about the baby.  I guess that means everything really is going to be ok."  About 5 minutes later my phone rang.  The girls were napping, so I grabbed it really quickly and didn't even look at the name on the screen.  It was Dr. A.  He had called to say that my PENTA screening from the previous week had come back with an elevated risk of an open neural tube defect.  He cancelled my August 1 ultrasound appointment and sent orders over to the perinatal specialist's office to get me in for a level II ultrasound sounded ASAP.  I was absolutely numb.  To me this was confirmation that my dread all pregnancy was correct.  Chris was supposed to be out of town that night, but it just worked out that he finished all of his business early and was only about 45 minutes away when I called to tell him about the PENTA results.  I thought then, God is so good!  He knew that I needed Chris to talk to that night.  Chris came home and we did some research on the computer, all of which reassured us that this test has a super high rate of false positives and really not to worry.  The next morning I decided to go to the lab and pick up my results because I really didn't know what I was dealing with.  I did and found out that my Trisomy 18 and Downs Syndrome risks were very small if any at all.  However, the risk for an open neural tube defect was >1:10.  The score that led to this score was 6.51 times higher than the normal average.  I looked up the different neural tube defects and they were spina bifida, anencephaly etc.  As soon as I saw the word anencephaly I knew that is what we were dealing with.  Chris still really tried to reassure me because really, what do we know other than we are at an elevated risk?!  So we waited...and waited.  Finally on Thursday I got sick of waiting and called Dr. M's office.  They had no record of me and couldn't schedule my appointment.  I got the paperwork re-sent to his office and then called back.  Ok, I was now there, but they had to get me in the system, which could take a "few days" before my appointment could be scheduled.  UGH!  The not knowing was KILLING ME!  This whole time I just remember constantly praying that if it was the Lord's will to make this baby perfect in every way.  We didn't hear anything on Friday, so Monday morning I called again.  To find out that I was now "lost in the system."  They called me back a few hours later and said that I had been "found" and now they were squeezing me into Dr. M's schedule for Wednesday at 10:15am. 

Chris and I arrived at Dr. M's office a little early and we were taken back pretty quickly for an ultrasound.  The tech said she would not tell us if there was something wrong or ok, but would tell us she was measuring on the screen.  Dr. M was in the next room watching all of the images and he would come in after to give us the results.  I was relieved, at least we would know SOMETHING soon!  The first images on the screen were not of baby, she measured my ovary, the placenta, etc, but as soon as the baby flashed onto the screen I knew something was terribly wrong.  I have had quite a few ultrasounds and know what to look for, so when I saw the baby's head my first comment was "that looks like an alien."  The tech immediately reassured me and said "oh, well most babies look like aliens at this point."  She took a few more images and then quietly left the room to see if Dr. M needed anything else.  He came in about 30 seconds later and said, "I'm so sorry, but this baby has anencephaly and is missing the majority of it's skull and large portions of the brain."  He said he was calling Dr. A immediately and would try to get us in to see him asap.  We did not see the baby's heartbeat on the ultrasound and there wasn't any fetal movement.  Dr. A wanted to see me immediately, so we went straight from Dr. M's office to Dr. A's office.  There we had to wait a little bit since we weren't on his schedule and he is one busy man!  He finally brought us back into his office and went over the diagnosis one more time.  I of course knew what anencephaly was and what it meant.  It is fatal, period.  The longest any anencephalic baby has survived in 3 months and that was a very mild case.  They are born without any cognitive function, are blind, deaf and cannot feel pain.  Most anencephalic babies are stillborn and of those that survive birth the majority live less than an hour.  Due to Dr. M's report, no heartbeat and no movement Dr. A recommended that we induce labor as soon as possible.  We agreed and determined that I would be induced rather than put under general anesthesia for the process. 

Thursday we went in for another appointment and were supposed to be induced that night, but due to a full hospital we were delayed until the next morning.  Chris and I came home Thursday night and just rested for a while.  I actually started having labor contractions around midnight and was in serious pain.  Luckliy they subsided around 3am and I was able to sleep from then until 5:30.  We went to the hospital at 6:30 and were all hooked up and waiting when my doctor arrived around 7:45am.  They started the drugs and Chris and I pretty much slept, watched tv and waited...ALL day long.  I was in pain, but it wasn't bad.  By 7pm I was getting really tired.  Chris urged me to go ahead and get the epidural, I'm glad he did.  I got the epi around 7pm and slept off and on until the baby was finally born at 3:50am.  We got to see her, she was very, very tiny and her skin was a deep purple color.  Her head was most definitely deformed, but her little face was very peaceful.  Since it was the middle of the night, our OB offered to baptize her for us, which we were very thankful for.  I cannot believe the peace that filled the room the entire time I was in labor and during and after her birth.  I know that can only come from the Lord and for that I am so thankful.  I definitely felt his presence and know that He has our little Avery happy and whole with Him now.  I'm a little bit jealous that our little girl gets to see Heaven before we do, but I am 100% counting on holding her when I get to heaven.  For now, I trust that my grandmothers are taking pretty good care of her and probably loving every minute of it.  Katherine even reminded me that she's pretty sure Colby was there waiting to lick her face.  But she hoped it wouldn't scare her.  I'm pretty sure nothing is scary in heaven.  :)  We all have a pretty big hole in our heart for Miss Avery, but the amazing thing is the joy and peace we have felt. 

The Lord has used our little Avery is so many ways and I am so blessed that we have seen little glimpses of that.  Chris and I both know that God is in control and that He has a perfect plan for us and our little Avery, even though it's hard to figure out how a stillborn baby could ever work for His glory.  He has, however, given us tiny glimpses that have so filled us with joy that they make the sadness seem a little less harsh.  I have had so many people say "You are in denial, you need to grieve." or "I don't understand how you could possibly have peace in a time like this."  To all of them my response has been the same: I do grieve, I do cry for the little girl that we so badly wanted, but the majority of my time I just feel peace.  I want to share her life so that it's not forgotten.  I want to share my faith, because it is only through my faith that it is possible to have peace in a time like this.  I have had quite a few people ask about my faith and it is amazing to me how receptive non-Christians are, because they don't understand and want to know more.  So even though our little Avery didn't live in this world, she has had a very big impact on the people we have come in contact with during this process. That is amazing to me and fills me with a joy that is truly overflowing to the point it fills in a little bit of the hole in my heart.  Every nurse, doctor, anesthesiologist, etc that knew us in the hospital knows our faith and our story and were all touched by little Avery.  If just one of those people starts to learn more about God, then her short little life was well worth it.  We may not see all of the blessings she had on this earth until Heaven, but I am thankful to have seen just little pieces to help me feel the joy. 

The Lord warned me that this would be my hardest labor and delivery and He was quite right!  33 1/2 hours in total from start to complete finish with the placenta, I was totally exhausted.  Looking back I can see that the Lord has been preparing me for this for years.  I remember reading a Christian novel a few years back with an anencephalic baby in it (the first time I had ever heard of it!), I have a whole host of friends who have had stillborn babies between 18 and 36 weeks and one of those happened to be anencephaly.  I remember being so touched by the book that I felt like grieving for the child that was just fictional!  Then I really grieved for my friends as they lost their babies and felt a connection to them that was unexplainable at the time.  The Lord gave me the knowing that something was wrong with this baby from the get go and I was able to be prayed up in the Lord, for He is my strength!  I feel as though I have been slowly grieving this little girl from day 1, even though I didn't know for sure that anything was even wrong.  He has allowed me to see the good that her little life has brought and He filled our room with peace and grace.  I didn't have a moment of sorrow or grief while we were in the hospital, I just felt peace.  How amazing is God's grace and how sufficient it is.  Wow!  He amazes me.  My prayer before going to the hospital on Friday morning was that He would use me to glorify Him in all things and that He would pour His light out of me to touch someone that needs to know Him better.  I don't know who that may have been, but I sure hope I get to see that when I get to Heaven.  It was truly an honor to be Avery's mom and I know she will be watching us from Heaven from here on out.

We love you Avery and we will never forget you.  It's goodbye for now, but we will meet again in Heaven.