O Baby

Sorry this is long.  Where do I begin?  I will say that I was a bit distraught in my last post.  Couldn't see past my own nose.  Couldn't see any preferable future.  But God is doing a number on me!!  And sometimes I think to myself that He is up there smiling on this situation and even laughing (which I would be too if you only knew the things I tell Him).  I truly believe God has a sense of humor.  There is absolutely nothing funny about baby #3's condition, but I got tickled during a prayer and made a joke that He could easily tell me what the gender was... that night I had a dream that it was a girl.  It was the first time I had laughed in 2 weeks.  And today we found out it was a girl!  Mati Claire is SOOOO excited!  She truly believes in Santa Claus now.  #1 on her Christmas list was a baby sister.

In just a few days, we have moved from shock and despair to optimistic.  2 weeks ago, I felt I got the death sentence from Dr. T.  Through the whole appointment, all I can remember hearing her say was that "it may be livable or not livable."  Of course it wasn't until I got home and started researching did I understand what she meant.

Baby Miley has an omphalocele.  "A what?" check out the link.  If you Google it, it will show very unpleasant and disturbing pictures, so I don't recommend that.  Hers appears to be holding her intestines and liver on the outside.  I was blind.  I couldn't see past the grotesque part of the baby to see that it is STILL a beautiful baby that needs help.  I thought I was carrying a "problem child".   Yes - call me a terrible mother for thinking that.  Its amazing just how low your mind will go.  I couldn't wrap my head around it.  One mother of an O baby blogged how it was a "bump in the road" when it was diagnosed but still had an awesome attitude.  A bump???  I considered it a pothole.  Or even a landslide.  An earthquake.  I wanted her attitude.  It gets worse...keep reading.

Let me back up.  When I found out I was pregnant, I was covered in psoriasis that itched and burned like I have never felt before.  My skin was on fire.  All I could think about was my medicine and how getting pregnant (which was a slight surprise) ruined any chance for treatment.  I had read that some pregnancies will help but doesn't cure.  This was the first of my babies that I cried over the positive home pregnancy test because it wasn't the right time.  Then within a week later, I started bleeding pretty heavy with the hematoma... I was told to go home and wait to miscarry.  I was put on bedrest and thought that just messed my plans up for my job and the holidays.  I know I know...very selfish.  You don't have to remind me... God does that everyday for me.  Then add nausea and fatigue to the list.  I couldn't get excited over throwing up and living off zofran.  Needless to say, I was never 100% excited.   More like 100% scared...sad. Don't get me wrong... I was happy, but I was also in physical pain.  I couldn't see God's plan.  Then we get diagnosed with the big O!  I mean really, what else can God throw at me? Didn't see that one coming either.

God has somewhat "cured" my psoriasis for a time.  And then it hit me.  He is pulling me out of my nice comfortable bubble that I live in...to show me just how good and how great He is.  Things that only He can do.  He is opening my eyes to a whole new world of living in fear, living for the unseen, and just living on faith.  He is forcing me to trust him on a whole new level...something I had never done before.  I prayed to God to change my attitude and He did!

We prayed for our next appointment with the specialist.  Prayed MANY times a day.  Was reading the story of Daniel to Mati Claire....she asked why he prayed 3 times a day.  I told her we should be praying more than that! Then God asked me, "why are you only praying like this when something bad is happening to you?" .... wow.  Can I get an Amen? Talk about putting me in my place.  I mean I was getting on my knees, going through the correct steps of a good prayer - numerous times a day.  All for baby.  Then I read Angie Smith's book "I Will Carry You."  She mentions the story of Lazarus several times.  In that, Mary and Martha don't ask Jesus to heal Lazarus... they just said "Lazarus is sick."  God already knows the troubles we have.  Jesus already knows what's wrong with baby girl.  Just state the simple fact.... and trust that He will do His job (whether its in your favor or not).  I am trusting that His will be done regardless of what I want.  I find myself saying the same repetitive prayer - and I'm pretty sure God got it the first time I said it.   ;)  God has surrounded me with peace and as much understanding that's allowed.  After a few days, I am only seeing the positive and have a completely new attitude towards this baby.  One I should have had from the beginning.  Please don't misunderstand me.... loving this baby was never a question... I just couldn't get behind the excitement.  Does that make sense?  I told God it was okay to take her if that was His plan and what was best for her.  Part of me can understand death better than a newborn baby suffering like this.  Is that horrible of me to say???

He forced me to look at why was I praying for baby to be healed.  Because deep - WAY deep down - this "problem" would pop our little perfect bubble we live in.  Then I thought there is NO way I could be a good enough mother to this child because I was selfish.  All I could think was how I couldn't take care of it.  I have no clue how to handle a NICU baby.  NG tubes, oxygen tubes, surgeries, respiratory arrest, omphalocele, gastric problems...... I can't handle this.  I...I....I... I....me...me.....me.... talk about selfish.   So why would God choose me?

Because I can handle it.  I will learn how to care for her.  And I have A LOT of love to give her.  A LOT.  And no, I won't be able to hold her for a long time or physically breastfeed her because she will be in the NICU on her back, I won't be able to tickle her belly-button because she won't have one, or blow kisses on her belly because I won't be able to hold her or touch it.  But I can tickle her sweet toes and kiss her on her head and tell her how much I love her.   God is healing my heart and sending me through the valley so I can truly appreciate the miracle on the other side.   And God willing...if everything goes like today's appointment.... she will be okay eventually.

Dr. P had to offer me the right to terminate the pregnancy.  Wow.  I must have been in the pit of hell.  Who could do that if there's a chance it will be made whole in time?  Who could do that period?  I couldn't believe I was sitting there.  Very surreal.

I will have an amniocentesis done in a few weeks to determine if there are any chromosomal abnormalities associated with baby girl.  If there are, her chances of survival are slim.  I am aware that the risk is still higher so I'm not completely delusional.  But we are optimistic because she is such a fighter! She has been hanging on to life since day 1.  I am already proud of her!

We don't know if we will stay in Jackson - that is one of the biggest questions.  Obviously we would like to be close, but we also want experienced surgeons.  Her umbilical cord only has 1 artery and 1 vein (normally has 2 arteries and 1 vein)... so she is very small but Dr. P said that was normal in these babies.  She was too small to see her heart as well as he would have liked, but we will have a fetal echocardiogram done at 20-22 weeks to see if there is a heart defect.    But most of our questions will come down to the amnio results in March.  Please pray for our family.  Again, we are optimistic but its easy to fall into the depression and downside of it.  Pray that God heals us all and keeps us focused on Him.