Beginning the Journey of Ezekiel Joseph

So now that all of you are up to date on our happenings here in the NICU.  We would like to share a little of our roller coaster of emotional pregnancy journey.  When I found out we were pregnant, I told our girls (Addilyn is 4 and Eleanor is 2) that they were going to have a baby brother or sister coming.  They were so excited, especially Addilyn, who automatically said she wants a baby brother not another baby sister.  We told her that we don’t get to choose, God chooses for us, but she could pray to God to have a baby brother, and she did.

God gave us a baby boy!  However, it took us awhile to find that out... and this is where our roller coaster begins.  David and I went in for our 20 week anatomy sonogram.  They started the sonogram and I automatically knew something was wrong.  The only thing we saw on the screen was a big fluid filled cyst like structure, we could not see the baby’s arms or legs, just a head and the cyst.  The doctor was called into the sonogram room and told us that they didn’t know what that was and referred us to the Maternal Fetal Specialist. They drew some blood for different tests and still did not know if our baby was a boy or girl.  

Notice his little head; the black circle is his bladder

The next day we got an appointment and we were so nervous.  We were then given the diagnosis of a Lower Urinary Tract Obstruction (LUTO), which means his bladder has no way to empty, so no fluid would be able to get to his lungs thus lungs would not develop.  The big cyst like structure that we saw was his bladder filled with urine.  With LUTO, the kidneys become severally damaged as well.  LUTO is a rare birth defect that occurs in 1 in 5,000 to 7,000 births, most commonly in males.  Other diagnosis we heard that are a result of LUTO were pulmonary ,.   and prune belly syndrome.  Our doctor gave us some options to do but none gave us much hope and the end result would be the same.  We were looking at comfort care, end of life care, when he was born and would meet with everyone at our next appointment to come up with a plan for his passing.  We were going to loose our baby.  It was just impossible to think of.  To carry him to full term and then loose him was so devastating, and we still were not able to see the gender.  The lab results finally came in a couple days later and we found out we were having a BABY BOY!!!!

Our next appointment with the Specialist was not for another month.  We lived, I should say just survived a day at a time, knowing we were going to loose our baby boy.  I was then 24 weeks pregnant and we went in for another sonogram.  The sonogram looked totally different, there was fluid around him.  Not knowing what could happen was hard.  They did say that the bladder could rupture from all the pressure of urine inside and we automatically thought it was that.  However the doctor came in and said things have changed a complete 180.  From all the pressure in his bladder, the urachus popped open and allowed the urine to come out freely into the amniotic space.  He now had fluid to breath, his lungs had a chance.  The doctor said we were no longer going to talk to palliative care, and he was very optimistic about Ezekiel's chance to live. From them on throughout the pregnancy we had sonograms every 2-3 weeks to check fluid levels and anatomy. The doctor said there is a change that the urachus -that popped open- could close back up and we would be back to square one. 

After weeks of sonograms and various meetings with different doctors, Ezekiel Joseph made his entrance into this world on Wednesday, February 1, 2017 at 37 weeks.  I had a 37 week sonogram to check fluid levels and the doctor came in and said today is the day to have a baby, my fluid level was too low.  It scared us so much.  Our planned c-section was not scheduled for another 2 weeks.  February 15th was supposed to be his birthday, we had plans, plans to receive steroid injections prior to delivery to help his lungs.  But Ezekiel had other plans.  He came out crying and only needed a little oxygen support.  We both immediately burst into tears.  It was so good to hear him cry.  Praise the Lord!