I met my husband at a wedding in 2008. My friend (the bride) had been wanting to set me up with him for a while, so she knowingly sat us next to each other at the rehearsal dinner. We lived in different states at the time but after that wedding, we started long-distance dating. I eventually moved from Arizona to Texas to be with him, and we got engaged less than a year later. Shortly after we got married, we embarked on a big adventure by moving to Germany.
Moving to Germany significantly changed the trajectory of our lives. We absolutely loved living abroad and traveling. At that point we made the decision to have my husband to pursue a direction in his career that would continue to give us opportunities to live abroad. We have never regretted that decision!
I got pregnant for the first time about 6 months into our time in Germany. I had heard rave reviews from several American expat women about giving birth in Germany, so I was not nervous at all about having my first baby in a different country. I also had nothing to compare it to. Everything was new to me, so in a way nothing was strange because I just didn’t know how it was normally supposed to go.
My pregnancy was going really well up until about my 30th week. At one of my normal appointments, we discovered I was having some preterm labor contractions. I had to be hospitalized for a few days while I was on an IV drip of magnesium. Then I took magnesium pills every day until I was full-term. That experience was a little scary, but I ended up not going into full labor until my due date.
The labor experience for me was traumatic. It was a long and painful day-my epidural was only really effective at blocking pain for a short time. It also ended with an emergency C-section that I was completely unprepared for. It was scary and it didn’t live up to the picture I had in my head for how the birth of my first child would go.
I was really disappointed that I wasn’t able to birth my daughter naturally. I had never considered that I might need a C-section so I never bothered to research what to expect or what the recovery might be like. There was also an emotional component to the “loss” of the birth experience I had hoped for and guilt about all the things that didn’t go right.
When I began my second pregnancy, I was concerned about whether I would experience any of the same preterm labor problems that I had with my daughter. I brought all these concerns up with my new doctor, as we had moved, and we went over my first pregnancy and labor experience in detail. I was monitored very closely and sent for extra ultrasounds to check on my cervix to make sure it was not shortening-one big warning sign for preterm labor. Everything always looked normal and I wasn’t experiencing any contractions early on like I had with my daughter.
I decided to ask my doctor what he would think about my traveling alone with my then 2-year-old daughter from California (where we lived) to Texas to see my husband’s family when I was about 30 weeks pregnant. Since everything was going well, he saw no issues with it, and I booked my trip. My husband was unable to go because of his job at the time.
Five days into my trip, I went into labor. I started having contractions around the time I was going to bed. I was in disbelief about it, eventually called my doctor in California in the middle of the night and they told me I should go to the hospital. In my mind, the worst-case scenario would be ending up in the hospital for a few days on IV medication, just like last time.
Upon arriving at the hospital in the early hours of the morning, I was taken to labor and delivery and waited for the on-call obstetrician to come in. Once she came in and checked me, it was very clear there was a big problem.
I was already 8 cm dilated. The doctor told me she was sorry, but she would have to deliver the baby. My brain flooded with panic. I had no idea what a 30-week baby would look like, what kind of condition he would be in, would he survive, or what kind of lifelong problems he might have. I was just praying he would be OK.
My brother in law was at the hospital with me, but I was alone in the operating room for the emergency C-section. It was the most alone I’ve ever felt. Being on the operating table without any familiar faces, wondering if my baby would survive, how dire the situation would be, and knowing my husband still didn’t even know what was happening to me. I hadn’t been able to reach him on the phone before the surgery.
I remember laying there holding my breath and my tears waiting for someone to tell me if my baby was alright. After what seemed like forever, I heard a little cry and I sobbed out of relief.
I wanted to hold him, but he had to be checked and stabilized. All the nurses could do was show him to me for a quick few seconds before they took him out of the room to place him in his transport incubator. He had to be transferred to another hospital because this hospital wasn’t equipped to care for babies at this gestation.
The doctors and nurses reported to me in the recovery room that he was doing well, told me about where he was going, and asked me if I had any questions. I was so overwhelmed and in shock, I didn’t know what to ask. I only knew I was happy he was getting cared for and doing well by their accounts.
It wasn’t until after our baby was already on his way to another NICU, I was finally able to talk to my husband and fumble out the words to tell him what happened. As you can imagine he was completely shocked. As was my mom when I called her. It was hard to find the words to relay this type of news to family, especially when I was still trying to process everything myself.
I knew I would have to stay at the hospital where I delivered for at least 24 hours before they would discharge me. I was focused on checking as many of the recovery boxes as I could, so I could show the doctor I was well enough to go. Thankfully, she discharged me about 36 hours after the labor and that’s when I moved into the Ronald McDonald House with my husband and daughter. The Ronald McDonald House is a non-profit organization that provides free (or by donation) lodging for families with children in the hospital.
Then began the long road of a NICU parent. We were told by the staff, “expect to be here at least until your baby’s due date.” They briefed us on all the milestones our baby would have to meet before he was able to go home. We learned all kinds of new words and acronyms. We learned how to wash our hands to our elbows in hot water. We had to learn how to care for a baby in an incubator attached to tubes and wires. We learned the panic of an alarm on the monitor going off and held our breaths waiting for it to stop or for nurses to come in.
My first week as a NICU mom was spent scheduling everything around when I could hold my baby. Because he was on CPAP (a breathing apparatus on his nose) and had so many wires and IV’s connected to him, I needed the help of 2 nurses or respiratory therapists to help me get him out of the incubator and position him on my chest. It’s really a strange feeling not being able to pick your baby up and hold them any time you want. The recommendation was I should only get him out to hold him if I could commit to sitting with him for at least an hour. I was also pumping milk every three hours. The whole routine had to be carefully timed.
Most days I would eat breakfast with my husband and daughter at the Ronald McDonald House and rush over to the NICU to pump. Then I held my son for as long as I could before I needed to pump again and eat lunch. I would repeat this in the afternoon until it was time for me to eat some dinner. Sometimes I would squeeze in another holding session before heading back home to sleep (and pump).
Any NICU parent will tell you that it is an emotional roller coaster. There are big highs when the baby meets a milestone or is able to come off some type of support. And there are big lows, when you have a set-back or when you’re wondering if you will ever get to take them home. A lot of people would say “I don’t know how you’re being so strong.” The truth was, I didn’t feel strong but what other choice do you have but to try and pull it together and keep going? I was doing my best, but there were a lot of tears and struggles.
Adding to the emotions for me was dealing with the guilt of not being with my daughter as much. I went from being her primary caregiver and with her every day to sometimes only seeing her for a few minutes in the day. My husband took over the duties of taking care of her, and while she was able to come and visit in the NICU, no two-year-old can last very long in there. I missed her, and because my husband was gone taking care of her, I missed him.
I felt isolated, like no one really understood what I was going through. I would try to take breaks from the NICU and spend time with our family, but I would start feeling guilty for being there. I always wanted to leave earlier than everyone else to go back to the NICU.
I wish I had known about or thought to ask about a NICU moms support group. Maybe one was offered to me and I didn’t take advantage, but I don’t remember. I think it would’ve helped me to hear from other moms who had been through it and were on “the other side”. To know that someone understood all the emotions I was experiencing. I journaled a little bit, and I’m glad I did but honestly, I haven’t gone back to read it because it is still hard to relive the experience.
After 42 days, our baby boy was finally ready to come home. Because we were still in Texas and didn’t live there, we took him “home” to my husband’s brother’s house. I was still riddled with fear that something would go wrong and we would have to go back to the hospital. We took another week to check in with a pediatrician and get logistically set up to go back to California.
The first few years of his life were peppered with more medical challenges and a lot of worry. Being a NICU parent is scarring in a way. It makes any medical concern 10 times more frightening. The stress from each additional problem, or cold, or head bump is magnified so much by the trauma of having a baby in the NICU.
Our son caught RSV at 6 months old and had to be hospitalized again. We had to do Occupational Therapy when he was one year old to get him to be able to eat table food. We found out when he was 15 months that he had something called a PDA, an opening in an artery that normally closes after birth. It causes pulmonary hypertension (which can cause an early death) and it has to be corrected. We found this out a month before we were scheduled to move from California to Ukraine. Our move had to be delayed making time to have the surgery to implant a device in his heart to correct the issue.
Sending your baby to have heart surgery, let alone any surgery, is also traumatic. Our son is overall very healthy and normal now, but there have been small lingering health and developmental things all related to his premature birth. He is still the one that I get the most worried about when he gets sick, even 5 years later.
When we decided to try for a third baby, we knew it was coming with risk and a lot of interventions to try and prevent preterm labor. In my mind, I thought the pregnancy would be uneventful until around the 30-week mark and then I would have to worry. However, right about the 18-week mark I started experiencing a shortened cervix.
Hearing that news so early was heartbreaking. I was surprised because I had been monitored for this during my second pregnancy and everything was always normal. I had to have a cerclage placed, basically a stitch to hold my cervix together. It’s a surgical procedure which meant I had to be in an operating room with a team of doctors around looking at me in a pretty vulnerable and uncomfortable position, and I didn’t even get the prize of a baby afterward. Just the hope that I could keep my baby inside long enough to survive.
I had to go every 2 weeks for another check and was placed on bedrest at home. I could get up and walk around but no more than an hour and I wasn’t allowed to lift anything as heavy as two gallons of milk.
Our whole lives changed. I could no longer do errands or grocery shopping. I couldn’t play with my kids outside. I couldn’t cook meals beyond warming up a few things in the microwave. Thankfully my Mom lived only 2 hours away at the time. She started spending 3-4 days a week with us to help out.
Because I was so early on when I started having these problems, I was terrified I could lose the baby. The emotional toll of worrying about this was very hard to handle. I was nervous for every appointment. It felt like time was going so slow and I was wishing for it to go faster so I could be closer to reaching a safe point for my baby.
As I continued to get checkups, sometimes everything was fine, and I felt encouraged. And sometimes they got worse and we started talking about more interventions and what options I had left. In addition to a cerclage, I also had to have a pessary placed because my cervix shortened even more. After that, there wasn’t really anything else they could do.
I tried to ask the doctor to plan my C-section for as soon as I hit full term at 37 weeks, but the earliest they could schedule it was for 39 weeks. I really wanted to make it to a planned C-section date to avoid the chaos of an emergency C-section if I went into labor prematurely. I already had 2 traumatic births and I was really, really hoping I could have one birth that was calm.
When I was 34 weeks pregnant, I started having contractions. I was in and out of the hospital for 2 days being monitored and getting injections of a drug that can help stop labor. On the second day when I was back in the hospital, it seemed the doctors had finally been able to get my contractions to subside.
I was preparing to stay in the hospital for observation for the next couple weeks on serious bedrest.
I hadn’t been able to eat all day because the doctors were nervous, they would have to take me back for a C-section. Finally, I was allowed to eat some dinner and not 30 minutes after that, my water broke. I was devastated. I had just regained some hope that I could make it to full term by staying rested in the hospital and in an instant, that was dashed. I was scared to have another premature baby and to have to be a NICU mom again.
Our little boy was a hefty 6lbs. and 6 oz. which is pretty big for a 34 weeker! He was born with some purple marks on his face that we were told was just bruising. He could breathe without support and I was able to start nursing him right away. Those two things alone made a HUGE difference in his NICU experience. He spent one week in the NICU and his stay was pretty uneventful. After 3 days of him being in there, I had a breakdown because he had a bradycardia (heart rate drop) overnight. A baby has to be “brady” free for 24 hours before they can go home. I started to worry that there would be more and more problems and that we may have to be in the NICU for much longer than I expected. I wasn’t sure I could withstand another prolonged NICU stay.
Also, around this time is when we figured out the marks on his face were not bruises, but they were a type of birthmark. We were visited by a pediatric dermatologist who told us he couldn’t diagnose it for sure at this age, but it was either a hemangioma or a Port Wine Stain.
After realizing we were dealing with a birthmark, more fears set in. At first many people were telling us it would probably fade, that they knew someone who had this, and it went away, that you can get laser treatments and it will disappear etc. I think those people were well-meaning, but it didn’t help me process the situation we were in, because I was thinking: What if his birthmark didn’t go away? What if this was always going to be on his face? How will he be treated? What types of mean comments would he have to endure? What would these people who said “it will go away” think of him if it doesn’t go away?
I wish more people would have said things like, “He’s beautiful with his birthmark,” “He will be strong and overcome any mean comments,” “He is going to do amazing things no matter what.” I wished I wasn’t being made to feel like it would all be better if his birthmark went away. My love for him isn’t conditional on a mark on his face, and he’s just as amazing with his birthmark as he would be without his birthmark.
When our youngest was about a month old, we went back to see the dermatologist and he gave us the diagnosis of a Port Wine Stain. A PWS is a progressive lesion caused by a gene mutation. PWS can also come with added complications of glaucoma or Sturge Weber Syndrome-a condition that can cause seizures. A Port Wine Stain can be treated with pulse dye lasers and it is recommended to start treatment early.
We started treatments right away and were doing the laser treatments about once a month before we moved abroad to Georgia. We also saw a neurologist and an optometrist to check for the other conditions, but there was no sign of either.
The laser treatments cause dark purple bruising in the treatment area. After each treatment, his face had a lot of purple polka dots and that would elicit a lot of comments like, “What happened to him?” or “What’s wrong with his face?” I understand, it’s jarring to see a baby with a very bruised face. But it is hard to have to explain yourself to strangers over and over again. I have more than once replied, “There is nothing wrong with him. He just had a laser treatment.”
There have been many times I have been thankful he was too young to internalize these questions. But those days are coming to an end. He will only become more aware of what people are saying about him and how they are looking at him. One of my biggest hopes is that we are able to empower him and help him build his confidence so he is equipped to handle the comments, questions, and cruel remarks that will undoubtedly come his way.
I have tried to share about our experience so that it can raise awareness. I hope that the more I share; the more people will get used to seeing someone with a difference and it will help them examine their words more carefully.
When COVID first hit, the first thing that happened to us was having to cancel a trip I had scheduled to Germany for a laser treatment for my son. I didn’t realize at the time; I was a week away from completely upending our lives. The following week we made the drastic decision to leave Tbilisi and go back to the United States to wait out the outbreak and to make sure we had access to the best possible healthcare should we need it.
The biggest thing that pushed us to do this is our middle son and his history of respiratory problems related to his premature birth. We were (are) very concerned that if he contracted COVID he would be more prone to have a poor outcome. The medical care in Tbilisi isn’t quite up to western standards. Thinking about having your kids’ life on the line and not having the best care, is really frightening.
When we left Georgia, we thought it would only be for a month or two. It turned into 5 months. We bounced around to 3 different rental houses in Texas and lived out of suitcases until we were able to get approval from my husband’s job to return.
During that time, we were doing virtual school for our kids, but we had the added challenge of not being in the same time zone. My son could never be on his class zoom calls. My daughter was fortunate that her teacher moved two zoom calls a week to a time where she could participate.
All of a sudden, I was on my own with all three kids all the time. My husband was teleworking and wasn’t able to help me during the day. I had to turn into the full-time mom and homeschool teacher (in a language that I don’t speak because my kids go to a language immersion school). I didn’t have all my normal toys, or my kids’ normal stuff. I didn’t have craft supplies to do all these Pinterest projects and I had to constantly think about how much I was purchasing because I knew at some point it all had to go back in a suitcase to bring it back to Tbilisi.
One bright spot during our evacuation to the U.S. was being able to arrange two laser treatments for our son. If we had stayed in Georgia, we would not have been able to do any treatments at all. We were thankful to find a doctor in Austin who was able to work with us and fit us in his schedule.
When we came back to Tbilisi in August, COVID was still not a big problem in Georgia. There were 10-20 cases a day for the whole country. Now, we are in the midst of a huge spike with record setting case numbers every day. I’ve had to make hard decisions about whether to send the kids to school or not. For a time, we felt pretty safe to socialize, travel, eat out, etc. and now we are back into a lockdown. We don’t go out, we see only a handful of people, and the kids are home from school.
Resuming laser treatments in Germany is not an option right now. Between the rising cases in both Georgia and Germany, the risks of travel and having to be in multiple indoor spaces, PCR tests, required quarantines, and needing to help my older kids with school-it is too much.