Life at Home

Eliza was discharged to home in late June 2006. Since we live in a city, she got her first stroller ride on the walk home on a beautiful day. She came home with oxygen and monitors, but none of that seemed to matter much since she was finally home. It was so nice to just have the two of us home. I declined to have any visiting nurse service because after 100 days I wanted to just be alone with my child. The NCCU nurses called regularly the first few days to see how we were doing and provided some much needed advice, like leaving the radio on because she wasn't used to the quiet.

Eliza's first year at home was filled with a multitude of doctor appointments, a small pharmacy of medications, one very nasty week-long hospital stay and a therapy schedule that requires Eliza to have her own calendar. Despite all of this, I have tried to give Eliza as "normal" a life as possible. Luckily she weaned off oxygen which allowed her to go on vacation to the Caribbean to see our family, not once but twice. She goes to the park, the zoo, the beach and spends weekends with her Nannie and Grandpa. Although I am very cognizant of keeping her healthy and avoiding "germ-fests," I see no reason to keep her under lock and key and have her live in a bubble. Just the simple act of taking her for a walk puts a smile on her face ... and it makes all the people she waves at smile too (she is quite the little waver).

Her days are not though filled with playdates and music classes. Instead her days are filled with physical therapy, occupational therapy, speech-feeding therapy and time at a sensory gym. Thanks to her wonderful therapists Eliza has made amazing strides, especially in her gross and fine motor functions. Her eating is another story. At 18 months actual age, 14.5 months adjusted age, Eliza's diet is limited to Pediasure with Polycose and four ounces of yogurt. She has a sensory processing disorder which makes eating not the fun experience it is for the rest us. SPD is just one more in a long list of acronyms that Eliza has had attached to her, IUGR, SGA, RDS, PDA, AOP, ROP, BPD a/k/a CLD, the list goes on. She has managed to rid herself of most of these, and with time, SPD will also hopefully be just a memory and a note in her chart.

Photo: Eliza Grace at 6 Months Old

There Will Be Good Days and Bad Days

After a few weeks as a permanent fixture in the antepartum ward, and after more bio-physical sonograms than I can recall, the day came when Eliza had to be delivered. The blood flow to her brain was too restricted and her life was at risk. At 1 pm my OB called to say that I would have a c-section that day. Although I knew this was coming sooner rather than later, it actually took me by suprise since I had really convinced myself that since I was feeling better, I would make it to 30 weeks. Pre-eclampsia and HELLP syndrome can be deceiving. You would assume that you would feel awful, but that is not always the case, and since I felt reasonably well I was really shocked by the news of my impending c-section.


Although I was 26 weeks and 4 days pregnant, Eliza was the size of a 24 weeker due to the IUGR. She was delivered on March 15, 2006 at 10:52 pm. She weighed 1 pound 4 ounces and was 11.5 inches long. I heard her cry and saw her tiny, tiny face after she was all bundled up for just a few seconds. My cousin, who was there with me for the delivery, told me how "great" Eliza looked for a micro-preemie. I wanted to believe her because she does have a wealth of knowledge and experience as a NICU nurse, but all I could think was "she has to be kidding, nothing this small can survive." It was another 14 hours before I saw Eliza again.

My mother and I stayed in the recovery room till dawn when I was moved to my room, a private room near the NCCU which spared me having to listen to the joyful sounds of the parents of the healthy full term babies. I don't think anything could have prepared me for how tiny Eliza was. My hand could cover her entire body. She was intubated, her skin was almost burgundy, she had a PICC line, her eyes were covered to protect them from the billi-light and lines were coming from her abdomen. For the life of me I couldn't figure out why these lines were coming from her naval, until the nurse explained that they place lines in the umbilical arteries and veins since they can't put an IV in a baby this small. The nurses assured me that Eliza was "doing well" and all I could think was if this was "doing well" I would hate to see their idea of "not well."

Later that morning one of the neonatologists came to see me. This was the first of many times I heard the "there will be good days and bad days" speech, a speech I came to hate over time. Before Eliza was born one of the other neonatologists had spoken with me about what to expect and had estimated that 26 to 27 weekers have about an 80% chance of survival. 80% hadn't sounded too bad. So when this new neonatologist came in after Eliza was born and told me she had a 50% chance of surviving I was kind of outraged ... how dare he take away that precious 30% chance of survival! As the weeks progressed though I came to really appreciate his honesty about Eliza's condition. It is too overwhelming so soon after delivery to hear the litany of things that can, might or will go wrong but you have no choice but to listen. You are forced from the very outset to make a multitude of decisions about your child's care, this at a time when other parents are simply trying to decide what to name their baby.

And so began Eliza's 100 days in the NCCU, some of them good days and some of them bad days.

Photo: Eliza Grace 4 Days Old

And So Began My Extended Stay on the Labor and Delivery Floor

I am a single woman who only wanted one thing in life, a baby. After many years of trying to have a baby, with ups and downs, steps forward and steps backwards, Eliza Grace was conceived via IVF in September of 2005. It was to be a wonderful pregnancy, or so I thought, despite being on a small pharmacy of drugs to maintain the pregnancy. All was going well until a routine visit to the OB in January 2006 revealed that I had slightly elevated blood pressure. With medication my blood pressure remained reasonably normal for a few more weeks. Then in February 2006, my blood pressure slowly crept upwards. Bedrest at home and medication were no longer controlling it and after a visit to my OB I was sent off to the hospital. The original plan seemed to be to get my blood pressure under control and discharge me to home on bedrest for the remainder of my pregnancy. Within a few hours it was very apparent that this was not going to happen, ever.

Looking back, initially I was not too alarmed about my admission. However as the hours dragged on and as my blood pressure kept going up to a high 215/125, I realized this was not normal and that things were never going to be "normal." Thankfully I was surrounded by good friends and my cousin, who is also a NICU nurse. I do not know what I would have done without these women by my side, especially my cousin. As the evening progressed I began to vomit and shake uncontrollably and had a crushing headache worse than any migraine I can recall. I think it finally dawned on me that all was not well when I saw the resident outside if my room holding his head in his hands. This is never a good sign.

The OB explained that at 23 weeks with IUGR (intra-uterine growth restriction) that the baby's viability was questionable. I was given steroids to help develop Eliza's lungs but needed to hang on at 24 more hours for the second round of steroids. Eliza was not even a pound according the ultrasound. I was given Demerol via IV for the headache pain and Magnesium Sulfate to prevent seizures and hopefully to help lower my BP. I was moved to Labor and Delivery and began to wait. I was surrounded by caring nurses and doctors who all tried to reassure me that all would be well. I am not sure I really believed them but somehow by morning my BP was down to a reasonable level and I and Eliza were given a brief reprieve from an early delivery. And so began my stay on the Labor and Delivery floor.