Our Newest Girl

I know that I have not updated anything about our new baby here on our blog since originally posting about her back in October.  Much has happened in our lives since first learning of her physical condition.  Most importantly, my wonderful, wonderful saintly mother was diagnosed with cancer last week.  I am not sure even how to formulate the words so I will just begin writing.  

First, I love talking about our new baby and I LOVE talking about my mother.  I promise I will cry both times.  I am really good at crying.  Really good, but it doesn't mean that you made me feel uncomfortable.  I wear my emotions plastered across my face and chest.  It hurts.  I love both of them  It is not awkward especially if I know you in person.  I love giving updates on her and will share willingly my joys and worries about her approaching birth.  Doctor's appointments, ultrasounds, surgery consults, and the like have become so normal I believe I have forgotten what a "normal" delivery was like.  Our children are so used to talking about all of this that it has become so normal to them.

We love her already so much.  I do get sad that this tiny, innocent baby will suffer from pain her first early days.  We know God will bless her and us with wonderful doctors and nurses that will help us tend to her needs.

I regret not having noted just a bit after every ultrasound so I could look back at her progress, concerns, and plans.  To back up, I will try to recall all that I remember from the beginning.

My mother is such a part of our lives and the timing of her being diagnosed with cancer and our baby's birth is something only God could have orchestrated.  I have written so many times about how wonderful and holy she is.  She has been my best friend since I was born.  She is my heart.  God blessed me from an early age to be able to see the sufferings she endured not only physically, but as a mother.  She loves deeply and is so willingly to take one for the team if that means someone will come to know Christ.  To know what she is about to endure has brought me to my knees more than once.  I wish I could share her saintly emails and all that she is offering this for.  It makes me sad and proud all at the same time as she is slapping satan in the face because she says "YES" at every appointment.  Her courage is the kind you read about in books.  One of my mother's good friends mentioned to her that maybe God is allowing her to suffer so a miracle will happen for our baby.  She really is a saint.  I can only imagine the deals she has made with God for her children and their souls.

Each ultrasound we had brought a variety of emotions.  Each of the technicians were so wonderful and we usually got into the deepest conversations about faith, family, and children.  One morning in particular, the computer system was down so the technician and I talked for about thirty minutes.  She was away from her Catholic faith.  She asked me how many children we planned on having.  I told her that we let God determine our family size.   We have no set number. We want what He wants and want who He wants.  I told her that it was easier for me to accept her diagnosis because I hadn't planned anything.  For me, when I plan events and it doesn't go as I had originally planned it is so much harder for me to accept.  When I just let God plan life, it is much easier for me to see that this is what HE MUST want.  She said that she wishes more families had that mentality because trying to control the situation leads to so much disappointment and anger.  I thought that was interesting.

Some technicians said that our case was very minor and small.  Others would say that her omphalocele isn't the biggest they have seen, but not the smallest.  I left some appointments really hopeful and some appointments with my mind very occupied and worried. She has measured big at each appointment.  At a couple appointments, the doctor was concerned about my size, gestational diabetes, a larger amount of amniotic fluid, and her head size.  Her head has been measuring about 3 weeks ahead each visit.  Although, this isn't uncommon in our family as we have BIG heads.

 John and I met with her surgeon in late November.  He was from the Children's Hospital in Omaha.  Dr. Cusick couldn't have been more kind, gentle, and hopeful.  He has four of his own children.  I told my own mother how fatherly and kind he was.  He was very hopeful for her case and for surgery to go very well.  He agreed that her omphalocele is on the small end and doesn't forsee any/many complications.

Originally, we were told that she would be taken immediately after birth and transferred to Omaha for surgery.  John and I would arrive after my dismissal.  Dr. Cusick has found that babies handle surgery better if you are able to give them a few days to get their physiology going, heart rate stabilized, and respiratory balanced.  Currently, she will be born in Lincoln and in the NICU for two days.  After those two days, we will be transferred to Omaha for her surgery.  Originally, we thought we would be looking at weeks in the hospital with her.  Dr. Cusick was very hopeful we would be home within a few days.  John and I sat there in shock.  We were planning weeks, but to be told DAYS...we just couldn't believe it.  I was more anxious about leaving our other children at home for weeks than her actual surgery.  I know much will be determined after her birth, but for now that was a great shot of hope.

Her omphalocele is measuring 4 cm x 2 cm x 4cm.  Right now, it only contains a small part of her small intestines.  At one appointment, they were concerned about her liver being involved, but I haven't heard that since.  I am going to be induced February 11th...the feast of Our Lady of Lourdes.  I will be 39 weeks.  The doctors want to have a more controlled environment for her birth.  It is so funny to know the day your baby is going to be born!  Right now, she is not completely head down, but not completely transverse.

I also wanted to write about the additional physical conditions a child diagnosed with an omphalocele may have.  At our first appointment, Dr. Kenney said that often babies with this also have Downs Syndrome or Trisomy 18.  There are numerous other conditions, but these are the top two.  Of course, this made no difference to John and I.  He told us if she had Trisomy 18 that she would probably not live after birth.  He mentioned we could do an amniocentesis or a specific blood test that is 98% accurate on determining other genetic factors.  He recommended the blood test as knowing if she had any additional conditions would better help the doctors treat her during and after delivery.  Everything came back completely negative from the blood panel as to her having anything additional.  By the time the blood work had come back which was about a week, God really filled my heart with such peace. I had decided that before I answered the phone that I would praise God for the gift of this child and thank him for whatever the doctor told us.  I can honestly say that I wasn't anxious.  He said, "Everything looks normal."  I don't remember feeling relief just peace.   I wanted what God wanted and believe so firmly to my very inner core that EVERY LIFE IS SO VALUABLE and every suffering has meaning.

My mother won't be able to be with us this time.  She begins chemotherapy on Tuesday and will continue with treatments every 21 days leaving her next treatment the day before I deliver.  God's timing....They told us that the second treatment is brutal.  I have shed more tears over those stupid words.  I know she is going to be going through utter darkness and OFFERING IT ALL FOR ME!!!!  That hurts.  I wanted to take her pain, not the other way around.  Right after her diagnosis, it was such a wonderful push for the last lap as we prepare for our daughter's birth and upcoming trials that may be presented.  I was focused on offering it all for my mom.  The tables have been flipped and now that wonderful woman who gave me life will once again be suffering so that I may have courage.  I am so grateful and it hurts very much.  

For now, this is a start.  I want to write about the following next:

1.  The life changing advice from my spiritual director
2.  Blessed Matt Talbot
3.  My saintly mother and her sufferings
4.  Our WONDERFUL family and friends...Simon of Cyrenes