Making waves

By Christy Riggenbach

My crazy adventure in the NICU started on Wednesday Jan. 9, 2008. I was 30 weeks pregnant with boy/girl twins. This was my second pregnancy and I had been feeling pretty good so far. Since I was pregnant with twins, I was already seeing my doctor on a regular every other week schedule.

Everything looked fine, both babies were growing fine. I had been tested for all the routine things they check and all looked well. My doctor assured me that she hardly every had twins deliver earlier than 36 weeks and she had no doubt that I would be different from any other patient!

On the morning of the January 9th, I don’t know what it was but I just felt, funny. I did not feel right and I couldn’t shake the idea that something was wrong. An hour later after going to the bathroom, I noticed some bleeding, which freaked me out pretty good and I tried to calm myself and not worry about it. I was thinking it was just probably normal body functions getting ready to deliver these babies a few weeks down the line! I called my doctor’s office and told them what was going on. The nurse said to go ahead and come in.

So I did.

The nurse asked me one question, “What is going on?” I answered with the issue about blood, and her reponse was that I was probably overdoing things, just go home and put my feet up, so I did. I sat around for about three hours still feeling “funny.”

We had a lot of snow at that time and my daughter asked me to go out and play, we bundled up and went out. We literally were not outside for five minutes and my water broke. I immediately knew what was happening, and waddled in the house to tell my husband. Crying hysterically I told him what happened and went and stood in the bathtub while he called his mom, and the hospital. I had so many thought racing through my mind. They had told me I was fine at the doctor’s office, this was definitely not fine!

We got packed ready to go and headed to Lakeland in Niles were I was supposed to be delivering. With a lot of things left out of the middle, I was obviously transferred to Memorial Hospital in South Bend. I was under the care of the special care OB doctor’s and was told I would be on bed rest hopefully for the next five weeks! I had no idea that if your water broke, as long as there was no infection, and plenty of amniotic fluid, you could stay pregnant indefinitely.

My husband left shell shocked to make arrangements for our then 2-year-old daughter, and to bring me more belongings from home for the long road ahead.

That night lying in bed, alone I was very worried but calm at the same time knowing the doctor seemed confident I would stay pregnant for many more weeks. In the middle of the night I started having contractions and a lot of pain and pressure. Finally around 4 a.m., I asked a nurse if I could have something for the pain, she said she would check with the doctor, and check to see what was going on with me. Surprise! The babies were not waiting -- Baby A who’s sac had broken the day before was ready to come out and was making waves!

Promptly a nurse arrived very happy and helpful to tell me the babies were going to be born that morning, at which I immediately burst into tears. I called my husband who had already left for work and my mom who quickly arrived. A C-section was necessary because I had already had one with my first child, and because of the situation which was arising with the twins. I was prepped and ready to go into surgery, still without my husband. The nurse I had that morning was truly a God send, she was so calm and sweet, exactly who I needed and had the words I needed to hear.

Baby A, Colton Luke weighing three pounds seven ounces and Baby B, Amity Rae weighing three pounds six ounces were born, announced at the same time, 7:45 a.m. Jan. 10, 2008, literally seconds after my husband walked into the delivery room. I got to hold each of them and then they were whisked away to the NICU unit.

Both babies were placed on C-pap to help with their breathing, I had received two steroid shots to help quicken their lung development. Colton was on C-pap for about two weeks while Amity was on it for about a week and a half. She seemed to always stay a couple days ahead of whatever Colton was doing. Amity did great with breathing, eating, Colton was a little more finicky giving us a scare when he kept throwing green residuals after feedings which prompted x-rays and scans one particularly scary evening!

Both babies continued to grow and thrive. My husbands biggest thrill was keeping chart in their NICU handbooks of their weight every night, it was a great joy when they would gain, and a huge disappoint when they would lose an ounce or even stay the same!

Having a child at home put me in a difficult place, I wanted to be home and be normal for her, but whenever I was away from the hospital I was edgy and rearing to get back to my babies. It was difficult not feeling guilty constantly because wherever I was, I felt like it was not enough to cover all the bases needing to be covered.

We had some interesting times in the NICU, having multiples makes it sometimes tricky for the nurses when they have a full house. We were separated a couple of times, which made it hard to have the babies on opposite sides of the room. We made it work to the best we could as a family. We endured what felt like forever, but really for some babies is a short amount of time. We were in the NICU for one month exactly.

Colton and Amity did well, they thrived, ate, grew, we were very blessed to not have any major health issues arise while we were in the NICU, the two of them were just tiny and in need of some major assistance in eating and staying warm!

The twins are almost two now, they are growing and are full of life and personality! We have had no long term issues from their premature delivery and we thank God for them everyday! We are so grateful to all the nurses and doctor’s who are at Memorial. We are truly blessed by their skill and labor of love which they put forth every single day.

They are truly wonderful people!

NICU Reunion 2009

The annual reunion for Memorial Hospital NICU patients and families will be held from 1 to 4 p.m. Sept. 27 at Healthworks Kids Museum. The event will include refreshments, activities, a chance to visit with physicians and nurses who provide care for infants in the NICU, and a special appearance by Ronald McDonald. HealthWorks is located on the 2nd floor of 111 W. Jefferson Blvd., South Bend. For more information, call 574.647.7351.

Abrupt delivery

By Heidi Prescott Wieneke

The doctor lifted a dry erase marker to the board and started drawing a graph with lines and numbers. The longer we waited to deliver, he explained, tracing each line downward, the lower the baby’s chance of survival.

Silence filled the room.

After two normal trimesters in my second pregnancy, my husband, Bob, and I did not expect the series of complications the doctors had been monitoring to lead us here. Not at 29 weeks.

I endured a month’s worth of appointments, tests, even a couple of brief hospital stays and orders for bed rest.

But an ultrasound on this blustery March morning indicated a possible placental abruption, where the placenta detaches from the uterus before the baby is born. It can be dangerous to the baby and mother.

Now we faced the most important decision of our lives. Of our baby’s life.

“It’s your choice,” the high-risk doctor said as we sat stunned and scared. I lifted my water bottle only to have it snatched by my OB/GYN across the table.“Not if you’re delivering,” he said, confirming the decision we made a minute later.

We were having a baby.

I journaled the unexpected turn of events to our baby that evening.

“The past two weeks have been a blur for your daddy and me. Everything has happened so fast. And it was not until this morning that we realized just how soon we would see you face-to-face.”

They whisked me into the operating room that same morning, and Evan was born at 12:45 p.m.

“You were lucky,” the doctor told us during surgery.

Until then, I had remained quite calm, focusing on each doctor, each test, each decision. But when the nurse wheeled me into the Newborn Intensive Care Unit, I broke down and cried at the traumatic turn of events.

The nurse scooted me up to an isolette, a fancy name for an incubator, and placed the littlest baby I had ever seen, in my arms. He weighed just 3 pounds.

Like any other baby, they swaddled Evan, who had a head full of blond hair, in a blanket. But unlike many babies, tubes and wires connected him to monitors and machines. At almost 11 weeks premature, his skin looked transparent. His hand wasn’t much bigger than Bob’s wedding band.

In the days ahead, we started to understand the sights and sounds surrounding our newborn. Having a preemie makes you feel helpless in many ways, but we strengthened our bond with Evan by talking to him and holding him as much as we could.

When the time arrived for me to go home, the back seat looked empty and my heart ached to be going anywhere without Evan in my arms.

“I’m ready to leave the hospital after what seems like a very long time. I’m sad that we’re unable to bring you with us. You’ll be here six to eight weeks so the doctors make sure you’re doing everything for yourself.”

Evan usually slept much of the day when I stayed by his side in the unit, and he’d wake up when Bob arrived at the hospital after dark.

His 3-year-old brother, Ryan, visited him first.“Hi Evan, I’m your big brother,” Ryan said softly as he peeked through the circular window of the isolette.

Every now and then an alarm sounded when his heart rate dipped, or his breathing would get shallow enough for a nurse to check him. Sometimes a connection would come loose from a hand or foot when he moved.

It is so hard not to worry all the time with a preemie. You worry about feedings. About fussiness. About germs someone might pass along. You worry about what tomorrow will bring.

We cherished every little milestone, like the day Evan moved from an isolette to a regular crib, and the day his feeding tube came out.

“Until now I’ve held you, taken your temperature and changed your diapers. But today they let me feed you and it was so awesome. This made me really feel like a bigger part of your life.”

We took Evan home four weeks to the day after he entered the world.

The hospital armed us with a heart monitor, oxygen tanks and a calendar filled with appointments. It didn’t take long before we became nimble carrying Evan, a diaper bag and portable oxygen tank everywhere we traveled.

“Your daddy and I are exhausted and that is probably an understatement. The past few months have proven so rewarding and at the same time so challenging.”

Four years have passed and our preemie no longer looks anything like a preemie. The doctors took Evan off the monitors and oxygen about four months after he was born, and he has never looked back.

But we do.

In terms of milestones, Evan completely ‘caught up’ with other children his age somewhere between 2 and 3. He is still our little night owl, and he is as strong-willed as they come. He loves to color and enjoys reading stories.

Evan often asks me to tell him the story about when he was born. I tell him he wanted out of Mommy’s tummy really bad, and one day he said, “Enough is enough,” and that’s when he abrupted.

We always ask him why he did that.

He responds through a smile, “I didn’t have patience.”

Our rollercoaster ride

Nina was born at 24 weeks, 16 weeks before her due date. Nina was born early due to premature rupture of membranes, without any medical explanation. She was delivered immediately due to the fact that both she and her mother, Deanne, had developed an infection.

Her birth weight was 1 pound, 10 ounces, which classified her as a micro preemie. Like all babies, her weight dropped, and her lowest weight was 1 pound, 4 ounces. At birth, she measured less than 11 inches.

Nina’s first week of life was obviously overwhelming. Her prematurity caused several complications immediately. Most severe, was a grade 3 brain hemorrhage, and seizures caused by the brain hemorrhage. This hemorrhage put Nina at a 70% chance for severe disabilities such as cerebral palsy, mental retardation, blindness, or deafness. Also, Nina was completely dependent on a ventilator for her breathing.

She remained on the ventilator from her late July birth until October, and because of her extended use of the vent, her lungs became scarred. Nina required an apnea monitor, steroids and oxygen when she finally got to come home on November 18th, one week after her due date. Nina was diagnosed with chronic lung disease, apnea & bradycardia, retinopathy of prematurity, a PDA (that would later be closed at Riley), and also at home physical therapy for many, many months. She was also eventually diagnosed with asthma.

Our NICU stay was the rollercoaster we were warned about. We were there for 17 long weeks. Because Nina has two older brothers, it became a challenge to balance time at the hospital with time at home with the boys. In many ways, the boys became our blessing, keeping us focused on keeping a “normal” life for them.

Our NICU experience put us through many positive and sometimes very negative emotions, the first of which was shock. Nina had a perfect ultrasound 3 weeks prior to her birth, and both of her brothers had been born full term, with long labors. Then feelings of being completely overwhelmed took over. The alarms of the NICU and the sheer reality of how tiny she was seemed to close in on us the first few days.

Day after day we visited her and spent time doing kangaroo care. Kangaroo care was most rewarding; we felt the most bonding and useful while holding her. There were many difficult days, and many, many times when Nina would simply quit breathing. She would turn this horrible color from lack of oxygen. The nurses and doctors would work frantically, and eventually, she would begin to breathe again. We watched her most carefully during feeding times, and there were sometimes we would thump her feet to remind her to breathe.

As our NICU stay drug on, feelings of exhaustion set in. We were tired of everything dealing with the hospital, and the unfairness of the entire situation. During those days, we learned that sometimes terrible things happen to people who have done everything right. Sometimes, there is no explanation and life just isn’t fair. There were many people who asked questions that angered us at the time. One person asked us “So, what did you do wrong?” We now realize that those questions were ways of making those people feel secure in the idea that nothing bad could happen to them.

When Nina came home, we had the immediate job of coordinating her care. Doctors appointments for all her specialists, her equipment, prescriptions and physical therapy became a full-time job. Being her advocate also became a job. There were social workers and others who were ready to give Nina diagnosis that she didn’t actually deserve. We were especially grateful for her pediatrician who listened to our thoughts and opinions. All issues were discussed, and we felt empowered in her care.

Nina is now a healthy preschooler. Her brain hemorrhage seems to not have affected her cognitive abilities. We won’t really know until she gets into elementary school. Because of her chronic lung disease, she has had to be hospitalized for RSV and pneumonia. Every cold or fever needs to be taken very seriously. There have been times when she is fine one minute, and then later she will wake up from a nap with an asthma attack. Her climb up the height and weight chart has been very slow, but steady.

In many ways, this experience has been the best, and the worst of our lives. We have learned so much about life and people from this experience. I cannot fathom how we would have coped with all of this without the support of so many people. Family, friends, neighbors, coworkers and on occasion, complete strangers helped us. Complete strangers would have encouraging words to us when they heard we had a preemie. Support, food and prayers from all of these people sustained us.

The most important life lessons were learned by us over the years, not just during our NICU stay. Be thankful for all of your blessings large or small, and realize that as much as you plan, things won’t go as you expect. Looking at the big picture is most important, and our children are our greatest joy and accomplishment.