My pregnancy was a surprise. While my husband and I knew we wanted children our original plan was to wait a few more years. When my birth control pill failed we were shocked but still excited that we were going to be parents.  My first and second trimester went great.  No complications whatsoever. At the beginning of my third trimester I started noticing minor swelling in my feet and legs. It was the weekend when I noticed so I contacted the on call nurse. She told me not to worry that swelling was normal. So I put it out of my mind.

Everything went downhill at my 31 (almost 32 week) appointment. I felt fine and I was excited because it was a Friday and I got to leave work early to go to my appointment. The following day my husband and I would be heading out on our “babymoon” We would be traveling up north over five hours away. I sat down in the doctor’s office and my doctors nurse asked me how things were going. When I told her I felt great other than some swelling.  She had a look of concern on her face and said, “swelling already? At 32 weeks?”  She checked my blood pressure and said, “have you ever had high blood pressure before?” I said, “never” She rushed out of the room because she wanted to check the protein in my urine. She came back in. My urine was fine. My blood pressure was checked three more times and only dropped when I laid down.

My doctor came in and explained that high blood pressure can happen in pregnancy sometimes. He didn’t seem too concerned but he wanted to do an ultrasound to check fluid levels and Isaac’s growth. The ultra sound showed normal fluid levels and he was measuring on the small side but not to the point of worry. I of course was freaking out. Isaac had always measured larger. In fact he was always measuring a few days ahead and now he was measuring a few days behind. My doctor reassured me that everything looked fine and sent me in for blood work. When the blood work came back everything looked great so I was given the ok to go on vacation as long as I took it easy (which was the plan anyway). We had to be back in a week for another check up. My doctor mentioned that at 35 weeks we’d do another growth check and if the baby hadn’t grown we might have to him out.

Once I was back from vacation I continued to be monitored. They had me coming in twice a week. My blood pressure sneaked back up when I went back to work so I was put on a low dose of medication. We’d also do NST’s (non stress tests) and ultrasounds to check fluids. They had me do a 24 hour urine collection. The day I was doing this I started to have blurry vision. I called right away and they told me to not to back to work until I had my results. The results confirmed I had pre-eclampisa. I was officially put on bedrest.

At week 34 my doctor was on vacation. It was the longest week of my life. I had decreased movement which scared me. I kept calling the nurses and they kept telling me things were fine. Baby was also passing the NST’s. Fluids looked good.  I couldn’t wait until my doctor was back.

My mom went with me to my 35 week appointment and my husband made the 1.5 hour drive to work. I was the first appointment of the day.  While the doctor had mentioned the possibility of an early delivery I never thought I’d be admitted the same day I had my appointment. So I told my husband to go to work. We did an NST, which Isaac failed. They tried everything to wake him up with no luck. The decided that they’d do the growth scan and then try the NST again. Before the growth scan started my doctor said he would like to see Isaac measuring at least 5 pounds. Our biggest fear came true. There had not been any growth since the last scan. Isaac was measuring at 3 pounds 12 ounces. He had something called IUGR (intrauterine growth restriction). There would be no need to do an NST and I burst into tears when I was told that he was going to be born that day. My mom called my husband and a few other family members and I was admitted the hospital.

The original plan was to have me take a drug to prepare my body for labor, then induce me the follow day. My son had other plans though and as soon as I was hooked up they noticed he was in distress.  I had a c-section a few hours later. He was born weighing 3 pounds 4.5 ounces. He was 17.75 inches long.  He needed a little oxygen at first and it was determined that he needed a NICU. Unfortunately, the hospital we were at didn’t have one so he was airlifted to the nearest one (1.5 hrs away). I was able to hold him and see him for about 10-15 minutes. I was after all still recovering from major surgery.

I took his leaving surprisingly well. It’s something that I look back on and can’t believe how strong I was on that day.  I still had to be closely monitored. My blood pressure was through the roof. I had to be put on magnesium. After about 24 hours I was finally off the mag and moved into new room. That’s when the emotions of the whole experience hit me. For some reason the hospital staff found it logical to put me, a mother separated from her newborn, in the same hallway with other mothers who just had their babies. All night long I heard babies crying. It was hard.

I finally made it to the NICU three days later. Isaac had been breathing on his own pretty much since he got there. He was seen as a feeder/grower.  His doctors made jokes several times that he was the most boring baby in the NICU because all he needed to do was learn to eat and grow. I really wanted to breastfed Isaac.  I had been pumping every two hours (and every 3-4 at night) since his birth. It was a week after Isaac was born that we decided to try breastfeeding. It went okay. We continued to work at it though and whenever he’d have a great day we’d add another nursing session. We’d have our good days and tough days with it. It is extremely challenging to teach a preemie how to breastfeed because they get really tired really quick. Breastfeeding requires a lot of energy. While it was both mentally and physically exhausting I refused to give up. Once he was nursing five times a day my husband and I “roomed in” and Isaac was discharged the following day. We spent 21 days in the NICU. He left weighing 4 pounds.

Isaac is now 3.5 months old (the photo is from when he turned 3 months old)  and he weighs 10 pounds 12 ounces.  He smiles all the time and loves “talking” to us. I still struggle emotionally sometimes with the whole experience of how he was born and the milestones he has yet to reach that others the same age or younger have met. I have a hard time when I think about other milestones like sitting up, crawling or walking and how he will likely be behind in these things too.  I think the story of his birth will be something I carry with me for the rest of my life. I feel that the emotions will always be raw.  In the end I have a healthy little boy and I love him to pieces and I wouldn’t change my experience for anything. It has made me a stronger mother, woman and wife.  

Respiratory problems…that was the brunt of what we could expect, if anything. So it wasn’t any surprise when they pulled our baby girl Maura out that she needed to be resuscitated. She didn’t cry. It took a minute or so. It seemed more like five. Overall, Maura was pretty good. They took her to the NICU just to keep an eye on her, but after a mere 4 hours, they brought her to me, and I snuggled down and tried to nurse.

For two days, things were normal. I was recovering from my cesarean section, and Maura was coming along fine. After being in limbo for a few days, it was quite a relief that there weren’t any other issues. I was ready to get out of there. I wanted home. The doctors all gave the OK for us to head out with one last stipulation – the car seat study. While Maura weighed in at 6 pounds 5 ounces, she was still a preemie by definition. Hospital policy required all preemies to take the car seat study. So I nursed Maura and changed her. She scrunched up her face as if to cry, but then settled back down. They took her off to be tested.

Joe and I waited for her, packing up our things. I took a short video of our hospital room as we were the first to use it in the new wing. Joe asked if he should head to the car.

“Just wait,” I’d said. After having to leave our son due to his bilirubin levels when he was born, I was just a little superstitious. 

When her test was over, the neonatologist came to see us. Maura had failed. She would not be able to go home. She had an “apnic” event. I felt as if I was being swallowed down a hole. This couldn’t be happening to me. Everything was fine. She was fine. They were going to keep her overnight for observation in the NICU. 

For two days, we watched Maura slide downhill. These apnic events became seizures. She was stripped of her newborn clothes, hooked up to monitors, and stuck with an IV with three antibiotics and phenobarbital. I remember the first time we walked out of the NICU. My husband cried. I promised him it wasn’t for long. This would all be a blur. Little did I know. 

On Friday morning, I walked in to see her. She wasn’t in an incubator anymore. She was holding her own, swaddled, sleeping. Things were looking up, or so I thought. The neonatologist came to talk to us. She said that if ever there was a time she wanted to transfer a baby to a better hospital, now was it. She mentioned Childrens Hospital in Philadelphia. It was all happening so fast. They were taking my baby…to another state…to another hospital…and she wasn’t coming home. 

Maura was transferred that afternoon to CHOP. It was such a foreign place at the time. Directions to get there, where to park, where the NICU was…we had no idea we’d soon call CHOP home for quite some time. 

Everyone knows NICU babies have rules. These rules are given to them by the doctors. They have to be off C-Pap before they can nurse, they have to breath on their own, hold their own core temperature, all those rules. Some babies are feeder-growers – just gaining weight and growing in womb like environments. Maura was a feeder-grower most of the time. I liked to call her “Regular Baby Maura”. I’d arrive at the NICU with my milk cooler at around 8 in the morning. We’d spent our days snuggling. Then there was the darkside – the seizures. 

You see, Maura has epilepsy. By definition, it means two or more unprovoked seizures. They thought it would pass. It wasn’t uncommon. They called it benign neonatal seizures. It was commonly controlled with phenobarbital so of course, this was the first course of treatment. Maura was resistant. They added Keppra which helped. Maura’s seizures stopped, and they sent her home after 17 days. We were kidding ourselves to think she was ready. She was so tiny in her carseat. She weighed less than 6 pounds at the time. She was still so helpless.

Three days later, she was seizing again. There were three at home. On the third one – when she turned blue – cyanotic – we brought her back. I felt so embarrassed. I couldn’t take care of my baby. I thought she was ready. She was far from it. There were several more that night. They were by no means under control. There were new rules. She wasn’t your run of the mill preemie. She had something to prove. Maura could have no more than 3 seizures a day (because after all, she was going to have them) and she couldn’t turn blue and need c-pap.

Every night before I went to bed, I’d call the NICU. The nurses were always so nice. They’d share every detail and wish me a good night. She often had good evenings – time usually not spent with us while we spent it at home with our toddler. It was the mornings that we’d wait with baited breath. I never called in the morning. It was motivation to get up and moving faster….to drive the 45 minutes to CHOP…to walk up to the NICU…to get her overnight update. It was usually then that I’d be let down. Her seizures liked to strike at night. I’d run the numbers in my head – Maura was far from coming home. 

Maura continued to baffle the specialists. Why were her seizures happening? Why hadn’t they passed on? What would they need to do to help her? They continued to dig deeper for answers. At one point, they even sent the geneticists to see us – to research incredibly rare (like less than 5 cases world wide!) disorders. It was quite scary at times.

One of the neurologists that had stopped in to see Maura in passing had mentioned Topamax. It was another seizure medication. Little did they know how much I’d research it. It was a different kind of drug. It didn’t react with the inhibitory reactors of the brain, it reacted with the excitatory reactors – a different approach – an option that I pushed for Maura for days before they finally gave the OK. It wasn’t approved for use in newborns, and I’d need to sign off on it. Maura’s seizures stopped nearly instantaneously. It was our miracle drug. 

I started calling the NICU in the morning. I found the faith I needed to believe this was it. And every morning, I reveled in the news. Maura was seizure free. The meds were working. Maura was given a new rule: If she could stay seizure free for five days, they would send her home. I knew this was it. 

After 35 days, Maura was released on three anti-seizure medications. 35 of the longest days of my life. I never thought that a 36 weeker would spend 35 days in the NICU. She had other plans for us. 

Maura has been seizure free for just more than 3 months. Do the math – as you can see, there were other seizures at home through the summer. Her medication levels were adjusted easily by phone and email, and we never brought her back to the NICU except to visit, of course! She is currently down to two anti-seizure medications, as we look to wean off of one in a few months to narrow her to just one medication. While 6 weeks in the NICU sleeping caused quite a bit of low tone, Maura is thriving with the help of Early Intervention and a lot of love at home.