Saturday, June 28, 2008

Alright then...


When my daughter Grace was born six weeks early and underweight, she was quickly placed in our hospital's neonatal intensive care unit (NICU). At that time, I was quite ill with the effects of severe preeclampsia, and couldn't be with Grace in the NICU.

My husband, Charlie, spent much of his time being with me or Gracie in the NICU. Honestly, I have just a few memories of the first weeks of Grace's life. A medication called magnesium sulfate was dripping into my body through an IV placed in my hand. I was tired, hot, swollen, and dealing with the beginnings of post traumatic stress. At some points, Gracie was the furthest from my mind. I was trying desperately not to have seizure, and focused on forgetting that she was fighting for her life in the NICU. Whenever I became stressed, my blood pressure would spike to extreme highs in the 220/180 range and my whole body would experience shuttering and shaking. Uncontrollable actions would randomly happen to me because I had cerebral swelling and high blood pressure. I had to forget the guilt I had about my baby, and focus on me. Today as I sit here writing this, tears pool as I think about what I had to endure to survive for my precious baby girl.

As I said earlier, I don't have very many memories of that time frame, but there are two instances that stand out. These memories revolve around Grace's neonatologist, John who ended all of his conversations with: "Alright then, any questions?"

Tiny blood vessels had burst within my retinas from the high BP, and it appeared as though I had spilled black coffee across my entire field of vision. I was afraid my vision would never return to normal, and honestly, I was having trouble getting the medical professionals to acknowledge this very rare complication of severe preeclampsia. I had just finished describing my symptoms to the nurse who was caring for me post c-section.

Suddenly, a blurry dark figure of a man appeared at the foot of my bed in light blue scrubs. He wore a blue scrub cap as well, and bright red and gray wiry hairs escaped from underneath his hat. Large gold rimmed glasses adorned his face, which made his eyes appear even larger with the magnification.

"Hi, I'm Dr. G. I'm caring for your baby Grace." His voice was very distinct, and it seemed that he enunciated all of his syllables very carefully. I wondered if he was British at first, but couldn't place his accent to anywhere specific.

I responded meekly, "Oh. Hello."

"She is stable right now, but I have a bit of news that most mommies don't like to hear."

My heart skipped a beat and my head throbbed even harder than before. I frantically searched my thoughts for a reasonable excuse for an introduction like that. Charlie interrupted and said, "Is she okay?"

He quickly understood our fear, and said, "Oh. I'm sorry. Um, she is doing well, but I had to give her a hair cut so I could place her central line in her scalp. I put it on the right side of her head. She has very tiny veins, and I could only find a good one in her head. I have something for your memory book though."

He held up a tiny plastic bag which held a lock of Grace's hair. Charlie received the bag, and quickly gave it to me. I remember feeling relieved that it was nothing more than a hair cut, but wondered how she would look with a shaved "sidewall" on the right side of her head. I put the clear plastic bag close to my right eye and tried to study the hair color.

"Oh, she has dark brown hair. I never saw her hair color in the OR because she had a hat on when I got my glimpse." I searched my thoughts and suddenly thought of a baby picture I'd seen of Charlie as a newborn. He had a head of dark brown hair. Plus, my mom was a brunette too. My thoughts were almost clinical. I approached the idea of Grace in factual terms and emotions didn't come.

Dr. John responded, "She is a beautiful baby, and you should be very proud. You get yourself better, and then come visit her when you feel better. Alright then, any questions for me?"

My memory begins to fade at that point but what I do remember is his compassion and genuine concern for me and my baby. This may sound trite, but I think I remember a twinkle in his eye, too. His demeanor was happy and comfortable. His nonchalant approach actually helped me to relax and know that it was okay to get better so I could care for Gracie later.

A little over two weeks later, Dr. John greeted us by Grace's bedside in the NICU. I had been discharged from the hospital, and I was feeling a bit more like myself again. The 40 pounds of swelling was fading, and my blood pressure had begun dropping. I still felt unsteady about my experience and was quite nervous with Gracie. To me, she was incredibly tiny, and at the time, I hadn't quite bonded with her. There were so many wires, tubes, and barriers to her. I secretly wondered if I'd feel like I was her mommy. You know that kind of mommy love that leaps from within in your heart and seeps out of every pore of your existence. It just wasn't there yet, and I had an overwhelming need to feel that. I couldn't figure out what was wrong with me.

"Hello. I wanted to talk with you about Grace. She seems to have a bit of a problem with her gall bladder. Her jaundice isn't improving in the way we'd like it to improve by this age. I called a specialist to come in and figure out what is going on. She is from Children's Hospital and she'll be here tomorrow to examine Grace."

"What kind of doctor is she?" I asked.

"She is a pediatric gastroenterologist. She takes care of livers and digestive tracts."

Charlie responded, "Oh. Okay. I suppose we'll have to wait and see what happens."

I remember studying Dr. John's face through my poor excuse for sight, but rather it was the concern in his voice that caught my attention. Charlie seemed to respond to his news with concern too, and then suddenly, it was like my emotions had broken through a protective levee. My thoughts were suddenly frantic: What's wrong with her? Will she be okay? This can't be good. I can't loose my baby. It was so much work to get her here. I'm afraid. I was suddenly filled with mommy love for her. The reason we named her Grace in the delivery room was that we thought God had delivered his grace to us in the form of our daughter. My squelched love leaped out of my heart and could no longer be contained. Somehow I felt as if God was speaking to me through Dr. John, and I will forever be indebited to him for reminding me to let my love for Gracie come to the surface.

As I reflect on those brief, memorable interludes with Dr. John, I can now see yet another miracle of his careful watch of Grace in the NICU. As a result of the GI specialist coming to examine Grace, we were quickly informed she had a genetic disorder of the liver called Alpha-1 Antitrypsin Deficiency. While this was a devastating blow to us as parents, it really was a miracle for us to know this fact about Grace. The majority of children with Alpha-1 are undiagnosed. A subtle symptom of an elevated direct bilirubin past the age of two weeks is what tipped off Dr. John there might be an issue with Grace's liver.

With the knowledge we have about Grace's genetic disorder, we were then able to arm ourselves with information about Alpha-1. Because the alpha-1 antitrypsin protein is not very effective and can't often times make its way out of her liver, it is not circulating in her bloodstream. Alpha-1 has a primary purpose of being an anti-inflammatory agent within the body. Its largest job is to enter the lungs to provide a counterbalance to neutrophil elastase, which eats up bad things which we breathe in on a daily basis. Because Grace does not have enough Alpha-1, her lungs are constantly being damaged by things she breathes in such as bacteria, viruses, particulates, fumes, perfumes, and dust.

Dr. John's curiosity set something wonderful into motion. We now have knowledge and can protect Grace from some of those harmful effects of Alpha-1. We keep her away from all cigarette smoke, candles, cleaners, ozone on Ozone Action Days, and swimming pool chlorine. It helps to know that these everyday little things can save small amounts of lung tissue over time. I know that only God will control Grace's Alpha-1 outcome, but it helps to know that we won't be inadvertently making bad choices for Grace along the way. We have little to no control over how her liver functions, but we can help her breathe freely along the way. The average Alpha lives to the age of 56, but I hope and pray that she'll live a long happy life.

So I pay tribute to Grace's neonatologist. He may not know how he influenced our lives, but I will forever be in his debt. Thank goodness for wonderful physicians like you, Dr. John. Your ability to notice subtle clues is what helped me to know I could get better after preeclampsia, to know that I did have love for Grace, and to know that she has Alpha-1. I will have reverence tinged with awe in regard to you for the rest of my life.


tiff said...

It is amazing how these doctor's can have such an impact. That was such a great post to read. said...

Lovely and yet emotional post!
I had pre eclampsia (toxemia) also-- although mine never got to severe.
I don't remember much from my daughters' birth either-- my husband and others still remind me of things I can't remember.
We thought God was at out side when our daughter was born also-- her middle name is Gracelyn-- Grace--God's grace and lyn --waterfall -
Jessica came via emergency c-section--- only 3 minutes after her water was broke

Thanks for sharing !

Christina said...

WOw! Dr. John sounds awesome. I am so glad that he took the time with you and with Grace to properly diagnose her. Thanks for sharing your awesome story!

Childlife said...

Jen - That was just beautiful -- I cried most of the way through it. Gracie's neo sounds much like our nurse Kelly -- both in competence and in compassion. You really made my cry with this...

"I secretly wondered if I'd feel like I was her mommy. You know that kind of mommy love that leaps from within in your heart and seeps out of every pore of your existence. It just wasn't there yet, and I had an overwhelming need to feel that. I couldn't figure out what was wrong with me."

I thinks so many NICU moms go through this -- I would have just had a horrible time if I hadn't had someone like Kelly telling me that it was normal. I'm so glad you had someone watching out for you and your amazing family too :)

hennhouse said...

Wow. Just wow.