Wednesday, August 7, 2013

Managing a NICU Baby with Children at Home AND Life as a Special Needs Mom

The hospital where Myra was born is putting together an informational and encouraging book for parents who find themselves in the Newborn Intensive Care Unit (NICU) with a medically fragile newborn.  I have been asked to write a few excerpts in my experiences with Myra, specifically managing a child in the NICU with other children at home and having a child with special needs.  I thought the Blog World might enjoy these excerpts, also.

Life with a medically fragile newborn and four children at home:
                When our daughter Myra was born under traumatic circumstances, my husband and I had four other children under the age of five at home.  We had generous family to help watch them for the first week as I recovered from my C-section, but after about 10 days everyone else’s life had to go on, so we were left to manage our five children between the two of us.  Because of my attachment parenting style, I never wanted to leave my daughter’s side.   And I didn’t for the first week.  My children came to the hospital to visit Myra and me.  Then, the H1N1 virus caused the hospital to not allow children under the age of 18 in the hospital at all, and we had to come up with a new plan.  I had a very needy newborn in the hospital that wasn’t promised to make it through her difficult circumstances, and four very needy children at home that didn’t understand why their Mommy wasn’t around and why their baby sister was hooked up to all these machines and not snuggled in their arms at home.
                 We created a schedule that allowed both of us to visit Myra and spend time with our other kids, trying to make life as normal as possible.  And thankfully my husband was able to take off work all 30 days she was in the hospital.  I would stay the night at the hospital and come home early in the morning.  My husband and I would switch and he would visit Myra for about two hours while I visited with the other four kids.  Mid-morning we would switch again and I would spend the day at the hospital.  At dinner time I would go home and eat with my family, all six of us together at the table.  After dinner my husband would visit Myra for another few hours, and in the evening we would switch again and I would stay the night.  My kids always had a parent home and knew we would all be together every evening.  They seemed to do great through the whole process.  We had an amazing church family that provided meals for us for many nights that made our life a little easier.
                In these 30 days we read books to our kids about sick siblings, discussed Myra’s condition and prayed with them.  A friend put together a brag book of photos of Myra and we looked at them often with our kids.  We explained all the tubes and wires and how they helped her get better.  When they visited her the first time at two days old I think they still were shocked, as anyone would be, but they were able to see through all the ‘stuff’ and smile and love on their baby sister.  We put the pulse oximeter on them and let them touch her and ask more questions.  And I’ll never forget their faces when they saw Myra again the day she came home, weeks since the last time they had seen her.  There have never been four more proud siblings in the whole world!

Mommy and Myra bonding

Kangaroo Care

Day 2, swollen

MommyK and Mr. Prince

Day 14, surgery for g-tube and Nissen Fundoplication

We both cried on and off for 15 hours while did a poor job of managing her pain

Day 11, First Family Photo

Day 30, Homecoming! 
Princess Pea (5), Angelica Pickles (3), Sid the Science Kid (6)

Boo Boo (18 months)

 Angelica Pickles (3)

Princess Pea (5)

Sid the Science Kid (6)

Adapting to being a parent of a child with special needs:
                Perfect.  That’s what we all want as we rush to the hospital in joyous expectancy of our newborn.  I had experienced four of these types of births.  I couldn’t wait to delivery our fifth.  But, our daughter Myra was born via C-section after broken waters, with significant amounts of meconium, and when her heart rate rapidly declined during early labor.  Myra suffered ‘severe global brain damage’ from lack of oxygen.  The doctors painted a grave picture while we were in the hospital with scary words like ‘cerebral palsy’, ‘mental retardation’ and ‘developmental delays’.  As any parent, I just wanted the best for my child and the expectancy of having a ‘healthy’ or ‘perfect’ baby seemed to be buried in the sand somewhere.  We clung to our faith, praying that God would do a miracle in Myra’s life.  We had a difficult 30 days in the hospital and brought home a tiny little newborn with only questions for her future.  She had many doctor appointments in the first few months, sometimes as many as 12 in one week.  I had five children ages five and under that I dragged around with me to every one.  She seemed to be developing ‘normally’ for the first weeks and we thought all would be well.
                Then, I started to questions whether she was hearing okay.  And she didn’t seem to look at me like my other babies did.  It was hard to change her diaper because she wasn’t as limber as my other children.  And at a few months old, she still wasn’t trying to play with toys or hold up her head.  All those words the doctors had mentioned started to repeat in my head.  I think my heart broke over and over in that first year as the milestone charts were thrown away and we realized that raising this child would not be like our other four children.
                Our first year was filled with therapies multiple times a week, numerous doctor appointments, hospital stays due to seizures, disorders that required me to give her shots for 4 months and other medical emergencies no child should ever have to endure.  Through it all, we were able to snuggle with our little girl and watch our other children love on her, and were so thankful she had made it through those first 30 days.  It was hard with so many sleepless nights and trying not to worry constantly, but we persevered and started a ‘new normal’ for our family.
                Over the next few years the diagnoses came.  Many of those scary words the doctors had mentioned after she was born, but not all.  ‘Microcephaly’ (small head), ‘epilepsy’, ‘cortical visual impairment’, ‘hearing impairment’, ‘developmental delay’, ‘oral feeding dysfunction’ …the labels stacked up.  The kicker: ‘Cerebral palsy’.  I eventually came to accept this as a diagnosis of her body, not a diagnosis of her being.  This is just a description of how her brain is communicating with her muscles, it’s not who she is.  What gives a child real quality of life amongst all these labels?  I’m still learning the answer to this question, but I’m on a path to find out. 
                At around 20 months our therapist suggested we get a wheelchair since Myra was growing out of our stroller and high chair.  I felt like if I ordered it, I was giving up on her.  It took me a number of months before I realized that this was just a tool.  Something to help her right now in her current circumstances, but didn’t define her future abilities.  This pattern repeated as we added hearing aids, hand splints, adaptive stroller, Ankle Foot Orthodics, a stander and a gait trainer to her list of assistive devices and ‘tools’.
                No matter what, Myra will always be our miracle.  God has proven his love to us over and over and we have seen so many miracles as Myra has defied her circumstances and done much more than the doctors ever thought she could.  And they need to keep watching, because I know there are more miracles coming!
                Having a child with special needs isn’t a cake walk.  But, it is the greatest adventure as you learn the true value of a person, learn that service is more rewarding than receiving and learn that life is more than milestones, achievement tests and labels.  And the byproduct of having four other children watch Myra grow is amazingly compassionate children, un-phased by physical or mental disabilities.  Children who see value and potential in all persons.   And I personally have a new definition for life, happiness, contentment and unconditional love.  I can look back and see how positive this experience has been for not only our family, but friends and acquaintances, and I know Myra’s complete story is not yet written.  So, we continue to press on…proud of our daughter and all the more better because of her existence, exactly as she is.   


Seizures :(




 Daddy time

Sisters playing


Bike at therapy

 Gait Trainer with Ankle Foot Orthodics

Unconditional Love
 Sibling Fun

 Therapy Cat, Oreo and Miracle

No comments: