Our Maternity Shoot

             This weekend we took some time to enjoy in some "normal" pregnancy moments with our sweet baby girl and take some maternity pictures.  We try and enjoy in these moments because we have so many abnormal pregnancy moments with a multitude of doctor appointments and plans for surgery and NICU stays after she arrives.  Here are a few pictures from our maternity shoot, we are so excited to be having a little Texas baby and share these sweet pictures with y'all.

 

 

 





 

May 8th – 30 Weeks

            Following a week trip in Ft. Worth we have a hospital and doctor picked out in Ft. Worth.  Christopher has been incredible coordinating everything for both of us.  We have chosen Cooks Children’s Hospital in Ft. Worth.  The staff that we met were very nice and helpful and that will keep us closer to home, once we find a home here in Ft. Worth.  Christopher and I are so excited to have the first major step in the  direction to meeting our baby girl!! All these changes must mean that Baby Girl really wanted to be born a Texan!! 

April 14th – 27 Weeks

            Today we received the most incredible and stressful news, we are officially moving back to Texas.   Christopher received an official transfer to the Ft. Worth plant. He has accepted the offer and starts work on May 16^th at the Ft. Worth plant.  We have just talked to the doctors and we have to be completely moved and under new doctor care by 32 weeks, which means we have to move in less than a month.  We have no time to process anything now it is just time to hit the ground running!!  This is going to be incredibly bitter sweet because at this time of being pregnant and the level of care baby girl is going to need it will be wonderful to be closer to family.  On the other hand, however, I can’t imagine leaving the family we have created here in Maryland. 

Ft. Worth here we come!! 

March 30th – 24 Weeks

         

 

       
     Following a wonderful weekend with some amazing people showering my sweet baby girl, we received some more news about baby girl.  Starting with the positive -- she is getting bigger and in some really good percentile rankings. I believe they said she is in the 40% percentile ranking for weight which is really good considering low birth weight is a risk for omphalocele babies.  However, this news was followed by some more concerning news about baby girl. Her superior Vena Cava vein is located on her left side of her body.  Normally this vein is located on the right side of a typical persons’ body.  This alone is not too much of an issue, and it would just be one more thing that would make her unique like that she won’t have a belly button.  The doctor’s concern about this vein is that they cannot see where it inserts into her heart.  This is concerning because this particular vein takes carbon dioxide blood to the heart.  If the vein inserts on the right side of the heart this is not a problem, however if the vein inserts in the left side of the heart then she will have heart problems.  This will be distributing carbon dioxide blood to the side of the heart that sends out oxygenated blood.  Our MFM said that if we do another Echo and confirm that incorrect insertion then one main change we will see is where we deliver her, in the OR at Children’s National versus the labor and delivery rooms next door in Washington Hospital Center.  This will be due to the fact that they may have to whisk her away immediately and do open heart surgery to correct the insertion.  We have since talked to the MFM again and our wonderful cardiologist and they have decided that they will diagnosis at birth the heart defect and will correct it within a few days.  This will require them to give her some medicine that will keep the flow of blood going in the backwards direction it is now instead of having it switch itself to the correct way around 12 hours after birth like almost all babies do. 

            I don’t think I have ever felt so helpless in my life.  Just as I become prepared for the last news they have given me, they find other things “wrong” with my baby.  I have become really familiar with the stages of grieving during this pregnancy, and I am only human if I admit that I am stuck now in the anger stage some days.  What I thought to be the most exciting and  anticipatory time in a new families life has become filled with doctor appointments, medical terms, and hospital plans all different from the “normal” pregnancy.

Proudly Introducing to the world our sweet daughter

             On December 3rd, 2015 Christopher and I joyfully found out that we were pregnant.  We could not be more excited to become parents and start this new incredible journey.  At our 12 week appointment, however we found out some unexpected and concerning news, our sweet baby had a birth defect.  This defect is called an omphalocele, where some of the baby's organs are forming on the outside of their abdomen wall.  In our baby's condition these organs were growing in the middle of her stomach.  A typical ompahlocele means that the organs that are involved are in a protective sac.   At this appointment the doctors informed us that another concern is that ompahlocele babies are at an increased risk for multiple chromosomal abnormalities and other concerns. Some of these chromosomal abnormalities did not have a very long life expectancy after babies are born.   That very day we met with a genetic counselor and after a very long conversation we decided as a team that I would have a chorionic villus sample (CVS) taken from the placenta that will give us information on baby's chromosomes and we can proceed from there.  Many tears were shed and multitude of prayers began just to help ease our fears.  How could this be happening to us and why was this happening were just some of the many questions going through our heads. We were facing the fear that our sweet baby would be born and not live very long in this world.  We felt incredible powerless in this situation. 
            The next day our genetic counselor called and we received the best news since our sweet baby was diagnosed with the omphalocele, she did not have any of the major chromosomal abnormalities (Downs, trisomy 18 and trisomy 13) which was a huge sigh of relief.  Lots of happy tears were shed! The weeks that followed we continued to receive positive news about our sweet baby with more negative results from the CVS. However the work did not stop there, this began our long journey, preparing for a completely different newborn experience. 

           At 18 weeks we found out that our sweet baby is a girl.  We spent a wonderful weekend surrounded by our family and some of the most amazing friends to have fun and celebrate our baby girl.  We were beyond excited to take a couple of moments so we can focus on a "typical" happy milestones while being pregnant.  At 20 weeks came our big appointment, where we had a fetal MRI, an Echocardiogram, and an Antinomy Scan and meet with the pediatric surgeon, genetic counselor, and the neonatologist.  This is where as a team we developed our delivery plan for baby girl and discovered what the next several months after will look like.  The wonderful staff we meet with at Children's National was incredible and answered questions with us for over an hour. At this time we knew that we could expect an average NICU stay of 4 - 6 weeks and her surgery to correct the omphalocele would occur somewhere between 6 months to a year.