Monday, September 7, 2015

Mary Elizabeth Corinne Johnson

After a lot of convincing from my husband, a leap of faith, a cerclage at 13 weeks, bi-weekly OB appointments, 20 weekly progesterone shots, 6 ultrasounds, and a summer full of excitement, trepidation, and many, many prayers, she is here!

Michael and I welcomed this sweet girl on Monday morning, August 24th,  at 10:38 am.  She weighed 4 lbs 8 oz and was 17 inches long (a new record in our family)!  Tears of joy and relief were shared between Michael and I as we heard, for the first time, sweet newborn baby cries.  Mary Elizabeth is named after our two amazing grandmothers.  We couldn't just call her Mary and we couldn't just call her Elizabeth, so together for one very long first name, we have Mary Elizabeth.  It's a lot of letters and syllables, but we love it!

Mary Elizabeth initially did very well with great APGAR scores out of the gate.  However, her breathing was a little labored and she had a fair amount of secretions in her upper airway.  Upon closer assessment by the newborn nursery staff, her oxygen saturations were lower than they should have been.  None of this was all that unexpected given that she went a few weeks early and was so small.  My c-section was scheduled this time and I was 36 weeks 2 days along.  Because of the type of c-section I had with Eddie (a classical c-section) the OB did not want me to go any longer for fear of the old scar rupturing and causing a terribly dangerous situation for both me and the baby.  We were hoping she might be able to swing it in the outside world, but we were not at all surprised when they eventually decided to send her to the NICU for respiratory support.  

She spent the first 2-3 days getting oxygen via nasal cannula to help her breathe.  Given her (mild) respiratory distress and prematurity, she was initially unable to feed by mouth, necessitating the start of intravenous fluids.  This allowed the NICU team to give her some form of nutrition and keep her blood sugar up.  However, IV fluids unfortunately require starting an IV which is no small task in such a small baby!  They also put a tube from her mouth into the stomach to eventually start oral feeds.

Over her first 72 hours, they were able to wean both the oxygen and the IV fluids.  They also converted her orogastric tube (mouth to stomach) to a nasogastric tube (nose to stomach), which is more comfortable and allows her to take a bottle a little better.  We then were working to transition her from taking feeds every three hours from the NG tube to taking the feeds by mouth.  Eating by mouth - a skill seemingly so simple and so fundamental - is thrown off even by a few weeks of prematurity and compounded by any element of respiratory failure.  The next step was to completely transition her from NG feeds to oral feeds.  This process is capricious, as we already knew with our previous experience with Edward in the NICU.  We didn't know if it would take 3 days for her to catch on and learn how to suck, swallow, and breathe simultaneously, or 3 more weeks.   After a consult and a lesson front the NICU speech pathologist, we were reminded of how to feed her in the side lying position and how to pace her as she breathes during a bottle.

Last week Dr. Marcotty, one of Eddie's eye doctors here in Cleveland stopped by the NICU to examine Mary Elizabeth's eyes.  Her eye exam was normal and did not show any evidence of retinoblastoma at this time!  Mike and I, again shared some tears of joy and relief, as Dr. Marcotty gave us his report and asked me to sit down because he didn't want me to pass out.  We have been anxiously awaiting that initial eye exam.  Dr. Singh, Eddie's ocular oncologist, will check her eyes again in two months.  In the meantime we will soon have an appointment with genetics to have her blood tested for the RB mutation.  We are hoping she will not show the same gene mutation and we can cancel future eye exams.

After 10 days in the NICU we were given the go ahead to take her home!  After losing a few ounces and slowly gaining it back, we welcomed her home Thursday at 4 lbs 6 oz.  We took her for her first weight check and she is now 4 lbs 11 ounces!  She is a teeny tiny little thing and is as cute as a button! Our first night as a family of four under one roof was, uh, well, not exactly full of sleep.  Except for Eddie, that is!  He slept all night a mist Mary Elizabeth's cries, diaper changes, outfit changes, and feedings!  Someone loves to be up all night and sleep all day.  But we are thrilled and so proud of Eddie during this time.  After all of his feet stomping, arm crossing, "I don't want any babies in this house" talk, he has absolutely taken to her and loves her to death.  He painted her a picture that we hung in the NICU and when he was first allowed to go to the hospital to see her he ran down the hallway of the NICU saying, "I gotta see THAT baby!"  This is definitely an adjustment period for all of us, and I know it will come with ups and downs with Eddie, but as of right now, he has pleasantly surprised us all.