This is an abbreviated story of Caleb and Leah's birth and their subsequent 60 and 75 day stay in the NICU.

Caleb and Leah were born September 6, 1995 after a few hours of preterm labor and an emergency C-section. They were 27 weeks gestational age. The events were unexpected and proceeded with terrifying rapidity.

Leah was born first weighing 2# 3.4 oz. (1007 g.). Caleb followed 3 minutes later weighing 2# 4.5 oz. (1035 g.). They were very frail looking, bright red in color, but cried surprisingly well. Their APGARS were both 8 and 10, not bad considering they were not capable of surviving outside the womb.

They were immediately intubated, given surfactant, IV's started, and fluids and medications were given. From there, they arrived at their home for the next two and two-and-a-half months, the NICU.

An introduction to the NICU in this manner is an overwhelming experience, even for someone who has a medical background and is somewhat familar with the equipment and proceedures. As you enter the NICU, you begin to hear the monitors, ventilators, and other equipment in use. The sounds of alarms seem to come from everywhere. Caleb and Leah were dwarfed by all of the ventilation and IV tubes, monitor patches and wires. So began our education as NICU parents.

The NICU staff was very friendly and outgoing. They started explaining what all of the equipment was and it's function. We were encouraged to ask questions. There's so much going on and to learn that it was overwhelming. After things settled down and the kids were stabilized, the neonatologist introduced herself and went over the most immediate concerns. She said that the first two to three days were the most critical and that there was an 85 - 90% chance for survival. At that moment they were the smallest in the NICU.

After the first few days the information overload tended to wane. We began attending family meetings about once a week that were attended by a neonatologist, a nurse practitioner and a social worker. Using a standardized format, the goals for discharge, our current status, and a list of the various concerns that have arisen were discussed. We were free to ask questions. Once the areas of concern were managed and the discharge goals were reached, Caleb and Leah would "graduate" from the NICU.

Before they would be discharged there would be a whole page of concerns. Between the two of them our concerns included Hyaline membrane disease, airway trauma, chronic lung disease, hyperbilirubinemia, coagulopathy, infection, anemia, nutrition, water loss stools, intraventricular hemorrhage, posthemorrhagic hydrocephalus, apnea of prematurity, metabolic acidosis, hypertension, aortic thrombus, retinopathy of prematurity, heart murmur, gastroesophageal reflux, and inguinal and umbilical hernias.

Initially the most immediate concerns were their ventilatory support, and treatment for possible infections. They spent three days on the ventilator and another seven or so on CPAP before they would finally breathe on their own. After CPAP they spent time under oxygen hoods, where the amount of supplemental oxygen could be closely monitored. They were gradually weaned to room air. For Leah, this progressed relatively quickly. Caleb was progressing at the same rate until an infection set him back. Ultimately, Caleb would be discharged on oxygen.

Central line IV's were started so that they could receive the optimal amounts of nutrition necessary for them to gain weight, strength, and maintain their body temperature until they could feed on their own. After an initial weight loss, we watched their daily progress.

Once they were off of the vents and CPAP we were allowed to hold Caleb and Leah. Up to this point we could only sit and look. Just a little touching. They were bundled up in receiving blankets and we got to hold them for several minutes. They were so light, it was like holding only the blankets. They were so small that we had to be careful with their head position so that they wouldn't desat or brady. As they grew, they felt more like "real" babies and we had fewer problems with position.

One complication we were most concerned with was intraventricular hemorrhage. Ultrasounds of the head were done during the first couple of days, then at regular intervals afterward. On the initial ultrasound Caleb was clear, but Leah showed an area of suspicion. Later, Leah was diagnosed with a Grade II intraventricular hemorrhage.

Leah developed a complication from the IVH, post-hemorrhagic hydrocephalus. The neonatologists had noted a rapid increase in the rate of her head growth. Followup ultrasounds showed an increase in the size of the ventricles in her brain. We were asked to consent to allow them to perform lumbar punctures (LPs) with the hope that the blockage causing the hydrocephalus (probably clotted blood) would be removed. The initial attempt was unsuccessful, no fluid could be removed.

We were reassured that there was no indication of brain damage at this stage. The head had room to grow and the brain could compress. A LP was tried again a few days later with some success. A pop was felt and fluid rushed out. After the procedure, the ventricles had reduced in size and the sutures of her skull had overridden. The doctor performing the procedure was ecstatic. So were we.

Over the next few weeks, Leah's head growth continued at an accelerated rate. This was very disconcerting and meant that the hydrocephalus was progressing. LP's were done occasionally, usually with the same result. Fluid removed, little reduction in ventricular size, and a resumption of the head growth.

Finally, it was suggested that we try serial LP's every other day for two weeks followed by a consult with a neurosurgeon. If this procedure was unsuccessful a shunt would need to be placed to relieve the pressure permanently. This is major surgery and involves placing a silicone tube from the ventricles in the brain and routing it under the skin to the abdomen. The decision to proceed would delay Leah's release from the NICU, Caleb was ready.

Caleb and Leah were ready for discharge. The end seemed like it would never come, then all of a sudden it was here. We attended the infant CPR class and were instructed on the apnea monitors and home oxygen. Then we spent the night at the hospital alone with Caleb and Leah for the first time. It a trial run before going home. We would still have the support of the NICU staff if we needed it.

Caleb was discharged November 6, 1995. Two months after birth and about a month before his due date. He was discharged on oxygen, theophylline, and apnea monitor. Caleb had an inguinal hernia to repair, so surgery was performed the same day at a local children's hospital. He sailed through the surgery and came home on November 7th.

After the two week trial a CT and MRI were done. Leah's head growth resumed. We became fixated on the daily measurement of her head circumference. After a few days the rapid growth miraculously stopped. The neurosurgeon's opinion was that Leah may not have found where she wanted to be with her head size. We had a 50-50 chance of needing surgery to place a shunt. Since monitoring the hydrocephalus was the only remaining concern, Leah was ready for discharge. It was November 19, 1995.

We finally had both kids home. Both were on Theophylline and apnea monitors. It was a new lifestyle having twins at home. Feedings were every three to four hours. Still worried about the hydrocephalus, I measured Leah's head circumference daily. Our first followup clinic was scheduled for December 22.

Since discharge and surgery, Caleb has been hospitalized twice. Once for 3-1/2 days in mid-December for RSV and once for croup in March. He was weaned from the oxygen in January. Both experienced "perpetual" colds from February until there was consistently warm weather in May.

Leah's hydrocephalus continues to be a concern, however, we have relaxed somewhat over the months. Her head growth has continued to follow a growth curve and in proportion to her other growth parameters. A followup with a neurosurgeon last spring revealed no sign of increased pressure, however her ventricles remain enlarged. We are cautiously optimistic that she will never need a shunt.

Both have done well on developmental screens through September 1996. They are developmentally appropriate for their corrected age. They are now trying their first independent steps and we are enjoying playing with them every day.

As we reflect on our experience over the past year, we are amazed at how the twins have progressed and how quickly time has past. The contacts we have developed through preemie-l and other sources painfully remind us just how fortunate we are. We thank God for every minute we get to spend with these kids and that we have been spared from the most severe complications. We pray for their future and the strength to deal with any problems that the future may present.