Month Three

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. The 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 1 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 everyday 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. 

Month Two

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 your baby is in pain but still see that they are 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 they were moved on to 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

Month One

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 you all that 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.

5 days after they were born we got to start helping with taking 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.

2 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 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 to hard for me to go back and look at these pictures but now I am in awe of my little fighters.

Second Trimester......and Last

August 7th I went in for the first ultrasound of my second trimester. It was on this day that we found out for sure that baby A was a boy. Baby B also looked to be a boy but they could not say for sure. Everything looked great with the babies.

The pain I had been having since the beginning of my pregnancy was still present. I was advised to take it easy from this point on. I spent most of my time in bed after this day. My husband started doing all the cooking so I wouldn't have to stand for long periods of time and grocery shopping was done with my husband pushing me in a wheelchair cart.

I went into the doctor again on August 21st. This appointment was just a quick check while the doctor's office was being moved. My general health was checked and they did a quick ultrasound just to try and confirm that baby B was also a boy. The quality of the ultrasound machine they had set up was not as good as the one they had been using so it was hard to tell. The doctor said it looks pretty likely that both babies are boys and said when we came in for the next ultrasound they would confirm it.

On September 9th I went in for my routine ultrasound that I was going to get a DVD of. Everything looked great. Their growth was good. Baby A was still a boy. To our surprise baby B was a girl! We cried it was so amazing that we were going to get one of each.

This is where my story takes an unfortunate turn. The ultrasound technician leaves and tells me the doctor will come in. The doctor tells me that they think they found something abnormal on the ultrasound. They are going to need to do a transvaginal ultrasound to check. The doctor showed me on the ultrasound that my cervix was dilated. He said that at this point they were going to send me down to labor and delivery because there was nothing that could be done to save the pregnancy. We were devastated. It had gone from one of the best days of our life to one of the worst. They moved me on to a bed for transport and my husband called my family so they could get there.

Once I got down to labor and delivery my regular doctor came in to talk to me. She said that there was something that they can do but I needed to meet certain requirements. They put me on monitors to see if I was having contractions and checked to see how far dilated I was. In order to save the pregnancy I would need to have surgery. To qualify for the surgery I would need to not have any contractions and not dilate any further. My bed was reclined with my head down to help with this and a catheter was put in because I would not be able to get out of bed. We stayed there in labor and delivery for several hours with no contractions so they decided it was time to move me. They moved me up to the antepartum section of the maternity ward. The next few hours went well and I was informed that I would go into surgery first thing in the morning. That night my husband and I picked names for the babies because we didn't want them to die without names.

The next morning they moved me back down to labor and delivery to prepare me for surgery. I was to have a Cervical Cerclage put in. This is a procedure done while you are awake with spinal anesthesia to sew the cervix shut so that further dilation is not possible.

When the doctor came in to talk to me about the surgery she told me that there are risks to doing the surgery like infection or breaking the amniotic sac. We knew it was the only option and so we were willing to take the risk.

When I got back from surgery the doctor told me that it went really well because the amniotic sac was not bulging through the cervical opening. This had allowed her to get a really good strong stitch in. I would be given vaginal antibiotics and remain at the hospital for three more days to make sure I did not develop complications. If everything went fine I would go home on strict bed rest (only allowed to stand to go to the bathroom). If things did not go well I would not be leaving the hospital until the babies were delivered. 

I did just fine with the surgery and prepared to go to my sister's house to be on bed rest. I could not go to my own house because it would require me to go up a set of stairs to get to the bathroom. I stayed at my sister's house with my husband splitting his time with me and being at home with our dogs. Everything was going fine until Sunday. On Sunday my husband left to go home to the dogs for the night and my brother-in-law went off to play basketball. I was sitting with my sister watching TV when I felt a pop. I was sure something was wrong. I went to the bathroom and I was gushing water. I came out and told my sister my water had broken. I got down on the ground and rolled onto my side which was all I could do. My sister ran for her phone and mine. She called 911 to get an ambulance there right away and called to tell my husband he needed to get to the hospital right away. During this time all I could think and say was that my babies are dying.

When we arrived at the hospital my husband was already there. I was taken straight to labor and delivery where they checked to make sure my water was broken. It was, so I was but back on monitors to see if I was having contractions. I was not having contractions and my cervix was sewn shut so I wasn't about to deliver. The doctor came to me with a whole new set of information. The amniotic sac was only broken on Baby A so Baby B was going to continue to be fine. I was now Preterm Premature Rupture of Membranes (PPROM). At 21 weeks PPROM is usually considered the end of the pregnancy. Most pregnancies are not able to continue and the risks of trying to continue are dangerous. The doctor told us if we were able to get to 23 weeks of pregnancy the babies could live but not before. If I did not go into labor and we chose to try to continue the pregnancy there was a risk that I would get an infection and become septic. This was one of the hardest parts for my husband about deciding to continue with the pregnancy. He has told me that he would stay awake at night a lot worrying that something would happen and he would lose me, the babies, or all three of us. Later my sister told me that at the time she thought I was making the wrong decision.

I was moved back up to an antepartum room where this time I would stay until the babies were delivered. I was on IV antibiotics and my temperature was to be taken every four hours to catch early signs of infection.Two days later after I had not gone into labor and it was looking good that the pregnancy would continue. It was time to speak with the Neonatologist. He came to speak with me about what kind of complications we could expect with the babies. I was told that babies born at 23 weeks are rarely normal and that if I delivered then we would likely be taking care of them for the rest of our lives. We were warned about potential brain bleeds that could lead to brain damage and chronic lung disease. The only way to reduce the chance of brain bleeds is to have a c-section. This was the point at which I knew that c-section was now my only option. The doctor also told us that because our son had no amniotic fluid, he could no longer move around and the longer he was inside the more likely he could be born with a club foot or club hands. At this point we needed to make it to 23 weeks or longer. However, the longer we go the better it would be for my daughter but the worse it would be for my son. That day was one of the hardest of my whole pregnancy because now I knew that not only was I risking my own life to save theirs but that I may have to make a choice to let my son die so that my daughter could live.

I continued in the hospital for two weeks with only my temperature being taken until I reached 23 weeks pregnant the point of viability. During this time I was completely depressed an unable to bond with the babies. I just stayed there in bed all day sleeping. I wasn't allowed to leave the room, get out of bed, or have many visitors because of the risk of infection. The only good parts of the two weeks was I never showed signs of labor and my husband and I celebrated another anniversary.

The day before I was to be 23 weeks pregnant I had my last appointment with the doctor. She told me it is normal for PPROM women not to bond with the babies they think might die. It was hard coping during this time knowing that I had done everything right and yet still there was nothing I could do to save them. It was out of my hands now. I had my last ultrasound to check how big the babies were in case I would be delivering soon.

 Baby A

Baby B

That night at midnight I had my steroid shot to help develop their lungs.

A week later on my 23rd day in the hospital I was 24 weeks pregnant. I began monitoring for the well being of the babies. I would be having their heartbeats checked twice a day by fetal doppler and I would begin non-stress testing on my daughter only. Only my daughter would be monitored because they would not risk her health by delivering based on bad test results from my son. Life went on without me while I was there in the hospital. My mother had surgery again and I couldn't be there for her. I watched Summer change to Fall from my window. My grandfather died. Anniversaries and birthdays were celebrated without me.

Babies' Heartbeats

On day 33 of my hospital stay my daughter failed the non-stress test. I was moved to labor and delivery for additional monitoring. My husband came from work and we waited through an hour of additional testing. Everything was fine and I was moved back up to my room. I asked my husband not to go back to work because I had a feeling he needed to stay. I had been telling my mom the night before while we were celebrating my birthday that I felt like I was going to go into labor soon.

At 2:00 pm I started having contractions. I was moved back down to labor and delivery and this time I would be having the babies. I stayed in labor waiting for the doctor to get to the hospital from being with another patient. 

Once she had arrived I was given an epidural and moved to a surgery room with a window directly into the Newborn Intensive Care Unit (NICU). I was 25 weeks and 5 days pregnant. At 7:12 pm my son was born.

 He didn't cry and I wasn't able to see him as he was handed off to the NICU. At 7:14 pm my daughter was born.

 I didn't get to see her either but she let out one small cry.

They lived and the beginning of our long and scary NICU stay began.

Alaric: Born 7:12 pm 1 pound 14 ounces  12 inches

Phyllis: Born 7:14 pm 1 pound 12 ounces 11.5 inches

After everything I went through and all the pain and heartache it was worth it. The fertility treatments and the pregnancy were the best and worst things to ever happen to me. I wouldn't take it back for the world. In fact I would do it again in a heartbeat. You can read more about them and our stay in the NICU. Thank you to everyone involved in our story and thank you to those of you that read my story I hope that this helps you in some way.

For those that are not going to read more of our story like I said they lived........

 Phyllis and Alaric 1 year old

 Alaric 1 year old

Phyllis 1 year old