NICU

At 25 weeks of pregnancy Alaric was born at 7:12 pm. He was 1 pound 14 ounces and 12 inches long.

Phyllis was born at 7:14 pm. She was 1 pound 12 ounces and 11.5 inches long.

This was the beginning of our long stay in the newborn intensive care unit (NICU). I want to start off this story by telling everyone, I have never missed a day with my children.

The night they were born I was desperate to see them. I was told I would not be allowed to see them until I was able to stand up and get into a wheelchair. The anesthesia had already worn off so I was quick to let them know that I could do that right now. I was not allowed to go see them at this point, I had to wait to be moved back up to my room and evaluated first. Once this was complete, I stood up from my bed and got into the wheelchair to go down to the NICU and see my children for the first time.

Anytime in the NICU is hard. The hardest part is not being able to comfort your children even when you know they are in pain. It is also difficult to cope with having no control over what will happen to your children. Most days in the NICU are the same. You go to the NICU and stare at your child through the isolette and pray everything will be okay. For the first 6 days of the twins stay in the NICU this was all I could do. The babies were so sensitive that we could not even touch them. 

During the first 5 days many tests were done. These tests were meant to see how bad things were. Each baby was given a cranial ultrasound to see if there were any brain bleeds. We had been told prior to the birth that brain bleeds can cause brain damage. I had elected to have the c-section to avoid as much risk of brain bleeds as possible. Alaric did not have any brain bleeds which was a relief. However, Phyllis did have a grade 1 brain bleed. This was not the news we wanted, but luckily for us a grade 1 bleed is not likely to cause long term damage. All we could do is continue to have follow-up ultrasounds until it cleared up. During regular examinations both babies sounded like they had a heart murmur. An echocardiogram (ECHO) was performed. The ECHO showed that both babies had a heart problem called Patent Ductus Arteriosus (PDA). Indomethacin was administered to help resolve the PDA and follow up ECHOs were arranged.

Five days after they were born, we got to start helping to take care of my son's basic needs. We were able to hold his feeding tube while he ate. We used swabs to wash out and moisten his mouth. We also were able to change his diaper. 

The next day we were able to do the same with our daughter.

It was on this day that my daughter was taken out of the isolette for the first time and my husband was able to hold her.

Two days later I held my son for the first time. He was more than a week old at this point.

My husband and I got to switch and hold the other baby for the first time a few days later. This was the last time we would get to hold them during this first month. After those first couple of weeks both babies got pneumonia. When they got sick they needed to have blood transfusions and antibiotics. We had to go back to looking at them through the glass. At least we were able to put our hands into the isolette and comfort them now. They got over the pneumonia and we celebrated their first Halloween.

 Alaric

Phyllis

Towards the end of this first month we had some good days. They both started using a pacifier which is important for learning how to suck. Phyllis had her follow-up cranial ultrasound which showed that the brain bleed had stopped. Phyllis also moved off of the oscillator and moved on to a ventilator.

 Alaric

 Phyllis

This was by far the hardest month in the NICU, but with great primary nurses and family support we got through it. It used to be too hard for me to go back and look at these pictures, but now I am in awe of my little fighters.

The 2nd month in the NICU started off with some good and some bad. Alaric came off the oscillator and moved onto the ventilator. This was the first time I heard my son cry. While many parents would not cherish this moment, I did. I cried after being able to hear his little voice for the first time. Both babies had follow-ups on their hearts. Phyllis got sick and had to have an x-ray. The x-ray showed a problem with her bowel. She would not be able to eat and would need some treatment to avoid Necrotizing Enterocolitis.

They were more tolerant of being touched at this point, so for the first time an exam was done on my son to check on his hands and feet. Because he had gone almost 5 weeks with no amniotic fluid he was, in fact, born with one of his feet turned in. The good news was he was born so early that we would be able to fix it with long term physical therapy. We now knew that he would be able to walk.

 A few days later both babies smiled for the first time. It is heartwarming to know although your baby is in pain they are still happy.

 Alaric

Phyllis

We celebrated Thanksgiving.

 Alaric

Phyllis

At the end of the month both babies had eye exams to check for Retinopathy of Prematurity (ROP). The exams showed everything was fine but they would continue to have these exams about every other week.

During the beginning of December, the babies started doing much better so they were moved onto CPAP. They got to start wearing clothes.

 Alaric

Phyllis

On the 3rd of December the babies were moved out of their isolettes and into cribs. This was the best day. Now that they were in cribs we could pick them up and hold them any time we wanted. It had been nearly 2 months and we finally had some control over their care.

Alaric

Phyllis

Right before they turned 2 months old Phyllis began to do really well and was removed from oxygen support. She was now breathing on her own and could learn to eat. It was at this point we started the long process of teaching her how to breastfeed and how to use a bottle.

Phyllis off Oxygen!

They also got to have their first baths.

Alaric

 Phyllis

This was our last full month in the NICU. Many great strides were made and it felt more like we were parents. We were finally moving towards going home.

Alaric

Phyllis

The last month in the NICU was by far the best. I had gotten into the rhythm of taking care of them. Every morning I would drop my husband off at work and arrive at the NICU at 8:30am. I would spend my entire day breastfeeding and bottle feeding the babies. I would change their clothes and their diapers. They were growing well and we were just waiting for them to be big enough to go home.

On Christmas Eve the babies got to be back together for the first time and enjoyed wearing their first Christmas Eve pajamas.

We celebrated Christmas. The NICU was great, they even brought in Santa to be with them.

Alaric

 Phyllis

 Alaric

 Phyllis

They were doing really well. Phyllis had been off oxygen for several weeks and was eating fine on her own. Alaric continued to need oxygen support but was working his way off of it. He was on low enough pressure to begin learning how to eat. Once he was able to breastfeed and use a bottle he just took off. He progressed quickly. I was told it wouldn't be long before they would be home with us.

We celebrated New Years.

 Alaric

 Phyllis

When I arrived the morning of January 2nd, I was told that they were ready to leave tomorrow. Alaric still was in need of oxygen support. He would be going home on oxygen and a monitor. The feeding tubes were removed and we began getting things cleaned up. Later that day I was told Phyllis actually would not be going home because her eye exam had shown signs of ROP. I was very upset that they would not be going home together but they couldn't get the eye doctor in to release her until the next week.

That night I stayed in a room at the hospital and took care of both babies on my own. I did this so I could learn how to manage with both babies, particularly with Alaric needing extra care with his oxygen. It was great to have a test run, and to have that peace of mind that I could call a nurse at anytime. 

The next morning we began to prepare both babies to leave so that Phyllis could go as soon as the eye doctor released her. We did the car seat test. They passed their hearing tests. They each had another ECHO to check their hearts which showed no more signs of a murmur. We had pictures taken.

 Alaric

 Phyllis

Alaric & Phyllis

After 79 days in the NICU, which was one day before his twin due date, we took Alaric home.

While Alaric was home and Phyllis was still in the NICU, I would spend my days with Alaric. Then at night when he was in bed I went to the NICU and stayed with Phyllis until the morning.

On Wednesday the 8th, the eye doctor came in. Phyllis would be able to go home but would need a lot of follow-up. Her ROP had progressed to a point that if we did not follow up she could go blind. They got her ready to go while I took Alaric to my sister's house. Alaric was not allowed to come into the NICU so we had to have someone watch him. That night everything was ready. She had spent 84 days in the NICU.

 Phyllis and Shannon

Alaric, Phyllis, and Shannon

We were finally all together again. The time in the NICU was hard but some very special nurses made every day easier. With the nurses help, I was able to survive my first few months home with some sense of calm. Raising twins is hard and raising a micro preemie is hard. Together I thought it was going to be impossible. Our story doesn't end here but I would say it gets better from here. There is a lot of work that goes into trying to get a micro preemie on track. It also takes a lot of work to keep a micro preemie healthy. I am eternally grateful to all of the people that have been involved in our story and those that are still working with us. It took a lot of hard work from a lot of people to make their lives possible. Although we still do not know what the future will hold for them or the challenges they will face. They are here. They are healthy. They are happy.