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.   

Perfect.

 Therapy

Seizures :(

Sisters

 

Joyful!

Cuddly

 Daddy time

Sisters playing

Stander

Bike at therapy

 Cousins

 Gait Trainer with Ankle Foot Orthodics

Unconditional Love

 Sibling Fun

 Therapy Cat, Oreo and Miracle

Myra's Testimony

One of my church pastors asked Paul and I to share Myra's testimony at our Thanksgiving service. Though nervous, I am honored at the opportunity to share what God has done for our little girl. This story is not in it's completion; I will some day write out every little miracle we've seen. But, it's a story to share with the world on what our God is capable of, willing to do and desires to do for all of His people.

For our 5th baby we had a home birth planned. We had a successful homebirth with #4 and were looking forward to the experience again. When I was 3 days overdue I had started some light contractions. My last two children were 10 and 15 days overdue, so I figured I still had another week. After slowing down from my day that evening, I felt uneasy that I hadn’t felt the baby move during the day. Within 30 minutes of calling my midwife concerned, my water broke and our baby had, had a bowel movement due to some form of stress. My water was thick and green. I called for childcare to come immediately and headed to the hospital as quickly as I could. I called a few friends and family members to be praying. On the way, I begged God to be able to hear my baby’s heartbeat. I told Him that I wasn’t ready to let this baby go, and I didn’t know if I would be able to delivery a baby knowing it had died. I didn’t care if they gave me a c-section, I just wanted to see my baby alive. I felt numb. The fact that my water had broke was a miracle. I was then alerted to the fact my baby was going to need significant help after birth that I would not have been able to provide at home.

When we arrived at the hospital they hooked me up to a monitor and I heard my baby’s heart beat. My midwife, Paul and I praised God in that little room.

I labored for 3 hours with a baby’s heart rate that wasn’t ideal. Suddenly, baby’s heart rate dropped during a contraction. It recovered that time, but the next contraction it didn’t recover. I was rolled away immediately for an emergency c-section with general anesthesia. Neither my husband nor myself watch our little girl being born. Which proved to actually be a blessing in disguise.

Myra was born not breathing with no heart rate and was put on full life support within minutes of birth. Some time between when her heart rate dropped and when she was born, 10-15min, she had suffered severe brain damage due to lack of oxygen.

She was hooked up to 2 large ventilators and had at least 7 IV meds going into both hands and her belly button.

At 4 hours and 24 hours she had uncontrollable seizures.

When people called and asked how she was doing, all we could say was that the doctors weren’t expecting her to live.

We visited her often in the first 48hrs. I felt strongly ever since I heard her heartbeat when we arrived at the hospital that she would live, and I believe God gave me a supernatural peace throughout this whole experience. But, that hope was sometimes hard to hold onto whenever we talked to the doctors.

On Day 2, the NICU doctor and pediatric neurologist sat us down and went through her body systems to explain her condition:
-she had no reflexes due to severe damage to the central nervous system
-her pupils were not responding
-she had no breathing efforts
-she was on blood pressure medication to regulate her heart rate
-her blood was having a difficult time getting oxygenated because of the pulmonary hypertension
-liver enzymes were leaking into her blood stream causing ongoing damage to her body
-her EEGs at 8hrs and 32hrs showed severe suppression of brain activity and deterioration from
the 1st one to the 2nd one
-her blood sugar and platelets were not stabilizing
-and her kidneys were not functioning at all and she was beginning to swell and retain water

The doctors told us that she was not likely to survive because there was nothing they could do to make her organs begin to function like normal. She was starting to swell and they said we should consider signing a Do Not Resuscitate paper or consider turning off her life support machines. They said she would probably swell up very large and then her heart would eventually give out. And because her EEGs showed little brain activity, if she did survive, she would likely be in a vegetative state for life.

It was that afternoon that Paul and I went back to my hospital room and sobbed, begging God to help our little girl. I believe God spoke to us through many songs and scriptures during this time. We listened to the song “Porcelain Heart” by Barlow Girl over and over. It says, “You pray, this can't be the way. You cry, you say something's gotta change and mend this porcelain heart of mine.” It was the hardest moments I have ever been through, and I still can’t listen to that song without crying. I told God we were helpless and needed His strength.

That day God showed me Isaiah 29:14, “Therefore, once more, I will astound these people with wonder upon wonder.” and gave me hope again. This verse has been proven over and over again these last 2 months.

And He shared Psalm 33:18-22 with Paul,
“But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.”

That evening we brought our four other children up to visit Myra. We weren’t sure they were going to have another chance to ever see her. Also, that evening Paul and his father put together a prayer time with our immediate family. Kevin brought his guitar and Paul and him stood over Myra praising God and proclaiming healing into Myra. At the same my mom, mother-in-law and a few others were praying in the lounge. At this point we understood that only a miracle would allow Myra to live. We were also able to pray for single mother who’s daughter had been in the NICU for almost a month with down’s syndrome and a plethora of other issues. He allowed us, in our suffering, to minister to someone else and it was Awesome.

It was the very next morning (Day 3) we went down to visit Myra, and the nurse told us she had began to urinate! Her kidneys seems to be functioning out of the blue. We got an email later that morning from a friend whose healing team has been praying for Myra. One of the members of the team said “God had her pray that the heavens would open up and that childlike in appearance angels were descending with all the organs that Myra needed from the warehouse of heaven. That the organs would be supernaturally transplanted into her and God himself would rub those organs and that she would produce urine that day.”

It was from that day forward that Myra began to get better, miracle after miracle. The doctors seemed to be amazed as each of her organs started functioning. There were many times they would report happy news and actually state they weren’t sure why or how that part of her began to work normally. We knew.

On day 3 she had her first voluntary movement
On day 6 Myra opened her eyes & yawned for the 1st time
On day 7 her blood pressure stabilized
On day 9 we were able to hold her for the first time
On day 12 she cried for the first time
On day 17 her lungs were completely healed

Those are just a handful of the many miracles we witnessed.

On day 16, Michelle King put together a world-wide prayer vigil for Myra through Facebook, of which hundreds of people attended from their homes. We prayed specifically for her suck, swallow and gag reflexes to start working, for her brain to be unaffected by this event and for her head to grow and the bones on her head to stop overlapping.

Four days later, one day before her surgery to place a g-tube in her stomach for feedings, she began to suck on a pacifier. In less than a week after surgery, the g-tube wasn’t being used at all for feedings and she was full-time breastfeeding in the hospital, a very special answered prayer.

After recovering from surgery, Myra came home on Day 30. She was given 22 diagnoses in those 30 days, almost all of which have resolved. But, the miracles haven’t stopped. Since she has been home:
-her tremors have gone away completely
-she is weaning off her seizure meds still with no seizures
-her gas issues related to her surgery have subsided
-her tone issues have improved on their own
-and she is tracking movements --- her eye doctor said her eyes seem to be normal after the CAT scan had showed the greatest damage to her brain was in the area responsible for vision - PRAISE GOD!

So, as of right now the only things we are still praying for are her brain to grow and move her skull bones so they aren’t overlapping, and for her brain to be unaffected by her birth trauma. Just yesterday her pediatrician said her head has grown .3cm!! Another miracle!! The doctors say she could still have severe handicaps and only time will tell. After all the miracles we have witnessed, it’s hard to even believe she isn’t going to be just fine. And we continue to pray and believe for God to completely heal Myra for His Glory.

Nicole Nordeman’s song “Gratitude” has really put much of this in perspective for me. Her lyrics say,
“Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today,
Peace might be another world away
And if that's the case . . .
We'll give thanks to You, With gratitude
For lessons learned in how to trust in You
We are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace
But Jesus, would You please . . .”

For the remainder of Myra’s life we are going to trust God that He will use her miracle testimony to prove His love to us, to prove His power over this earth, and to strengthen the faith of anyone who hears her story. And no matter what her outcome, we are going to praise God and trust in His greater plan.

This verse has become dear to our hearts, as we feel as Paul did when he wrote to the Christians of Corinth. 2 Corinthians 1:8-11, “...We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.”

Please continue to pray for Myra, and to praise God for His faithfulness in her name. We give Him all the Glory for her continued healing and are thankful for His many blessings this holiday.