Parents in the Waiting Room

28 years ago on August 21 my water broke. I was 13 weeks pregnant. I had a less than 1% chance of my pregnancy continuing to a place where I would deliver a healthy baby. God came to me in a very special and unique way during that time. I was studying a Psalm with a friend and as the verses went over and over in my mind, I chose to believe that God was speaking to me as to what God’s will was for my baby and for me.  These were the words that permeated my thoughts that day and words that would carry me through until the day she was born on December 2nd at 28 weeks.

1-My soul waits in silence for God only;
From Him is my salvation.
He only is my rock and my salvation,
My stronghold; I shall not be greatly shaken.

My soul, wait in silence for God only,
For my hope is from Him.
He only is my rock and my salvation,
My stronghold; I shall not be shaken.
On God my salvation and my glory rest;
The rock of my strength, my refuge is in God.
Trust in Him at all times, O people;
Pour out your heart before Him;
God is a refuge for us. Selah.

As I look back on it now, I feel as if it was a holy visitation. A season of life where God became so present in my great need that I experienced a continual sense of that mysterious presence with me. Slowly others began to experience it too. We walked through the amniotic sac sealing, breaking, sealing and breaking again I think 3 or 4 times before it finally broke all the way in mid-November. By that time I felt carried and absolutely sure that I would have a baby girl when all was done.

After attending a women’s event at my church this same presence gave me a name for my baby. The speaker’s topic was about a woman in the Bible named Hannah. When she shared with us that the name Hannah meant full of grace or to show favor and I knew in a very clear way that this was the name of the little one in my tummy. As time went on and we would go through each day, the impressions only got stronger and others came my way to share with me what was taking place in their own hearts as they prayed for this baby. It was truly one of the most profound spiritual seasons of my life.

The day she was finally born, December 2, 1986, was an amazing day. When I woke up (the epidural didn’t take on my left side so I had to go under for an emergency c-section), I was presented with a polaroid (remember those?) snapshot of a perfectly formed little girl that my husband had been privileged to named Hannah. It was very surreal in light of the fact that the last thing I heard from my doctor as he spoke to the other doctor assisting him was, “I have no idea what we are going to find in here.” Much to his surprise he’d found a perfectly formed little Hannah.

Later that day I met the neonatologist when I got to touch her through the little hole in the incubator. He looked me in the eyes and soberly said, this little one is really a miracle. With no fluid to fill her lungs for those last 3 weeks they were on the verge of turning plastic-like. He sincerely believed that another 24 hours and we would not have had a baby. It was stunning, profound and most definitely incredibly real.

It was a month before I got to hold Hannah. I used a breast pump that resembled the milking machine I’d seen at work in my uncle’s barn. A machine like that definitely does not promote the warm feelings that come with being a nursing mother. It was crude and lonely sitting in the room doing that task every so often. The nurses would take my tiny amount of milk, put it in the fridge and wait to use it for her. It was my only tangible connection to this beautiful baby during that month of waiting. Traveling back and forth from the hospital in Omaha to my home in Norfolk (2 hrs away) my heart was fractured between two worlds. The surreal presence that surrounded me subsided and as hormones kicked in my reality became a tight rope of stressful living.

In late January, just a week or so after I had held her, we received a late night call telling us that Hannah’s abdomen was severely distended and that it might be good for us to come down the next day. Dean stayed home to work as finances were incredibly tight and Stephen needed some routine to his little life. I arrived at the hospital the next morning to see my little 3 lb. baby looking like a starving child in a third world country with the added tinge of blue in her skin. Tests were being run to discern what wad happening. Earlier in the week they had determined that she had a milk protein intolerance which included my breast milk. She was placed on a predigested formula with hopes that the blood in her stool would disappear.  The loss of the hope of nursing her was a big one but nothing compared to what I witnessed that particular day. I stared at her and held her head in my hand and did what I could to comfort her at a distance.

The next morning when I arrived at the hospital I was greeted with, “Has the doctor seen you yet?” fateful words every parent in the NICU understood as part of a second language you learn in the trenches. There had been three shift changes since I had been there the night before and the nurse I’d left my phone number with forgot to pass it on. No cell phones back then. As they began to fill me in on her condition I was just stunned. Her colon had constricted due to a disease called necrotizing entero colitis – NEC. It was described as common in preemies whose bowels weren’t ready to absorb food and functioned as if gangrene had set into the bowel. I signed papers and within a few minutes she was whisked off to surgery. Hannah returned sporting a double barrel colostomy where one part of the was bowel exposed and tied into the abdominal wall with the other end exposed providing an opening for stool to collect in a very small plastic bag. lt was all very surreal for me to experience by myself. In the weeks to come I would learn to change the colostomy bag on my own and keep a clean vaseline gauze on the other. Two more bowel surgeries followed and in July everything was put back into place.

Hannah’s life has been full of doctors and hospitals. In addition to these surgeries…

  • she was hospitalized after being home for 2 weeks with an RSV pneumonia
  • had 3 surgeries on each ear during elementary school.
  • At 14 she was diagnosed with major depression/severe and bulimia nervosa and admitted to the Eating Disorders Program at Children’s hospital where the psychiatrist told us we needed to understand that her depression and eating disorder were intricately related to her experiences in the NICU.  She arrived on the verge of cardiac arrest from electrolyte imbalance. Two weeks into her stay internal bleeding caused her to be hospitalized in the Med/Surg. wing after the discovery that her hemoglobin level was down to a 3.9 with 12-13 being normal.
  • After two attempts to return to Norfolk we were told that if she did not go into residential treatment she would die. We put her in residential treatment in Utah for 11 months and hoped she would be able to return to normal life after discharge. Knowing what we now know about how the brain responds to trauma, it makes sense that a full recovery hasn’t been completely possible.
  • In high school her kneecap popped off of her knee and lodged into the side part of her leg. A similar injury had occurred when she was 12 and jumping on a trampoline. We learned over time that this happened due to a birth defect with the tibia and fibula twisted incorrectly below the knee. In 2011, to correct this, her doctor in Utah twisted them back into the right place and inserted two large screws to keep them in place. It was the first surgery done completely away from us and I am sure it was harder on us than it was on her! Her knee functions beautifully now!
  • Since living in Minnesota Hannah has been in outpatient treatment at the Emily Program on an ongoing basis. Insurance coverage for Eating Disorders is mandatory here. In addition to their support she also spent two periods of ten days each in the behavioral health unit at the University of Minnesota Riverside Hospital. There she was assessed, reassessed and given the tools to live at each stage of her journey. Her major issues are major depressive/severe and generalized anxiety disorder. Our family is committed to embracing mental illness in the same way we would any of her other physical illnesses. The brain is an organ like any other in the body and needs to be respected with equal understanding.
  • 18 months ago or so, Hannah went in for a partial hysterectomy. When the ob/gyn went to do the surgery she inserted her camera and it went right into her small bowel instead of an open abdomen. Her doctor called in another surgeon and he spent 2 hours reconnecting her bowel in that spot. When the ob/gyn came to meet me in the waiting room she was literally shaking. She informed us that the entire bowel was glued to her abdominal wall and adhesions were encasing everything. A colorectal surgeon was consulted. He encouraged her to wait at least 6 months for the next surgery where he would work in tandem with the other doctor. Her pain was significant so 4 months later the surgery was scheduled and after almost 3 hours was successfully completed.
  • At the end of May she went to the ER in excruciating pain and discovered she had a bowel obstruction. After a week with an NG tube and no food she was discharged only to return a few days later. Upon discharge the only instructions the doctors she was seeing would give her was to eat soft foods. Upon hearing that my parents pastor had surgery at the Mayo clinic for a very similar situation, she sought a consult here. Now she is in surgery with her parents in the waiting room.

It seems that the waiting room is where we have lived since August 21, 1986, when my water broke. The experience of my pregnancy with Hannah was a time when God’s presence was very real to me as well as to others in my life but everything turned a corner when mental illness came into our lives. It is utterly impossible to navigate the world of the brain from a spiritual perspective only, especially a black/white, either/or, all or nothing brand of Christianity that we had known and taken leadership in since high school.

In order to save Hannah’s life Dean and I have had to be open to confrontation and influence from others about our daughter, our family and our lives in general. We have had to be continually persistent with efforts at communication with professionals: the schools, the therapists, the doctors, and even the lawyers. As there is no clear communication with United Healthcare when it matters most, lawyers are simply required. BUT by the time you acquire them you have learned yet another new language and taken your ability to confront others at an entirely new level.

Having been blessed with Hannah in our lives Dean and I have had to dig very deep inside of ourselves and find the strength to move on.  The last 27 years of our lives have been lived leaning in and participating in her recovery journey. She will never be like she would have been had my water not broken. She will always be her own unique self though and we will actively be her parents until we are no longer on the planet. God has made us deep people – we hardly ever take things at face value and we rarely cling very solidly to anything because the pull away from things can be excruciating and painful.

The stress that has come with this reality has been largely beyond anyone’s actual control but it has taken a huge toll on my body as the primary caregiver for Hannah over the years. In 2008 as I was strongly encouraged by someone to continue to live MY life and pursue my own dreams, letting go of Hannah as an adult, I did that. I went back to school at 49 and tried desperately to reignite my teaching career. I went to work and discovered that my inner landscape is vastly different than it was when I was a classroom teacher. Surface things make me crazy. Nonconfrontation and action nearly sends me into a catatonic fit – really, I’m not kidding. Change is the one constant in our lives and I’m really struggling living in a culture that is bent on preserving the past and keeping families all together. I often don’t even know what to talk about when I’m in a group especially if it’s just polite conversation. When you’ve been to hell and back a few times, the earthly, temporal world of men seems quite shallow. It doesn’t mean that it IS necessarily it is just that I’ve been hyper-focused on the depths and that’s honestly where I am most comfortable now.

If you have made it this far into my blog for today, thank you. I just needed to get it out of me as I sit here in yet another, “Waiting Room”.

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