Category: Trauma

Mental Health, NICU, Parenthood, Trauma

Life After the NICU

by admin January 17, 2019

So, now this was the fun part, right? Hah… it was surely exciting but so nerve wrecking! We soon learned that the NICU never ends at discharge.

If I am going to be real, and I always will be. I will admit I struggled to approach the discharge. Don’t get me wrong, I love my baby and I wanted to bring her home more than anything. But, in my mind I kept thinking that she would come home like a “typical term baby” would…the NICU was going to allow that to happen. It was going to help her be healthy. The g-tube went against all of that. So, I had to grieve this too, just like I had grieved a full pregnancy and all that goes along with that.

The first week, we were trying to figure out how to live life, not only as new parents but as parents with all of the gear courtesy of the NICU. It was like we had our own little NICU in our bedroom. It was a maze at times trying to sort out the cords and monitors, while learning how to use the feeding pump. Our house beeped all hours of the day and night with all the equipment. To say we were exhausted was an understatement.

I remember feeling such a strong sense of resentment towards my husband during the first few months of “becoming a parent–at home”. I am sure this picture probably resembles much of what occurs in a majority of new parent homes.

Our daughter continued to have GI problems, vomiting became a norm in our home. It was not unusual for her to vomit 3-5 times a day. I would research all hours to find a diagnosis, a specialist, a treatment, anything to help her. Then, I was also fighting with SSI and Medicaid to get coverage for my daughter. If any of you have ever had to deal with these agencies, then you know it is an unbelievably frustrating one. Long story short, I was able to get her on a medical waiver due to her medical conditions but it was a 9 month battle. And, I felt that everything was on MY shoulders, not his. It was a real dark place for my husband and I. But, I will say after some real honest moments, usually painful ones, we have fought our way through it…together, plus the help of a couple sessions with a marriage counselor.

Being a parent means being busy! Each week we have multiple appointments for either doctors or therapies. We are always monitoring something or on the lookout for another thing. But, I will say as she continues to grow and get stronger, we have “graduated” from monthly specialist visits to more infrequent bi-annual check-ups. It is just on her
terms, which I should have known would be the case–typical Lucy. (grins)

I won’t go in depth of our feeding journey, because this is a heck of a story in itself. And, it is still going on. But, I will say that our girl had vomiting issues since day one of being home, and it was awful. I felt awful because she had to go through this every day, and I couldn’t fix it though I tried, I tried so hard. It became a massive science experiment, changing one variable at a time and measuring outcomes. Often times with results that did not make any sense. On top of the vomiting was the struggle with oral eating. She never really ate for us, so each feeding was a stressful event. I remember struggling a lot with the thought, “How can my baby not do something as simple as eat?”

She continues to see the GI Feeding Clinic at UNC Raleigh and receives weekly feeding therapy to help her develop the skills and desire to eat. It has been a very slow process, similar to that of the NICU, taking one step forward and taking two steps backwards. But we are grateful for the progress she has made. See, I told you the NICU never ends at discharge.

This GI feeding issue has been the crux of a lot of my stress as a new parent but I have come to live with it. And when I say live with it, I don’t mean succumbing to it…but more so, accepting it in a way that I still find love and joy through it. It wasn’t always like that, there were many ugly moments where I found myself regretting parenthood. It took a lot of processing and support to accept this as our new norm.

I am still pretty vigilant to anything that happens to Lucy, but I don’t think I would be any different even with a healthy term child. And, I still find myself in moments of healing from the NICU. I still think back on some of the losses from having a micro preemie, like a very plump belly, maternity photos, taking home my baby post delivery, etc. My eyes still well up when I reminisce on the tender moments of the NICU that rocked my soul. I can even admit that I do experience some PTSD-related reactions when things resemble a little too much of the NICU but as time goes on, it happens less and less.

Today, I am proud to say we have made great strides in this post-NICU journey. Lucy has grown stronger and is now walking and making messes everywhere like a typical toddler. She plays and laughs in a way that will surely make anyone crack up. She learns every day and I LOVE being a part of that.

My husband and I can laugh and enjoy one another again. We feel like a team again. We go on dates and we plan for the future. I mean, don’t get me wrong, I still want to throat punch him here and there, but I wouldn’t want anyone else to go through this crazy life of ours.

I no longer medicalize everything (this is huge!). And I have come back full circle into civilization again, socializing, working and making meaning out of all this, because NICU life is extremely isolating. It hasn’t been easy by any means. I still struggle at times but with time, things have gotten easier. I hope that for any of you reading this, you know things can get better.

NICU, Parenthood, Trauma

Our NICU Experience

by admin January 16, 2019

What started out as a blissful pregnancy turned into a nightmare of a birth. To this day, I wonder how we even got through it. I remember the first time I saw Lucy in the incubator. So tiny and fragile. Her skin was so red and thin. All the tubes and wires coming in and out of her. Honestly, she didn’t look like any baby I had ever seen. At this moment, it was all so surreal. I was just there. She was just there. I was in a lot of pain that day from surgery and all I wanted was to lay down and sleep.

I remember for the next two days, I did not even think I was a mom. It never registered in my brain. I did not ask to see her, instead my husband asked me to go. Looking back, I was numb. I was numb to the situation, and I was numb to the emotions. I was just surviving at that point.

I stayed in the hospital for a total of 5 days, and by day four, I started to have a desire to go down to the NICU to see Lucy. We got to hold her under our shirts (aka kangaroo care). It was bittersweet because we knew we would not be taking her with us. We knew there was so much uncertainty about whether she would make it out of the NICU. The one thought that got me through the next several weeks was that she needed to stay in the hospital to keep growing and getting stronger, it was as if the incubator was an extension of my womb.

While at home, I spent my time pumping milk every 2-3 hours day and night. It was exhausting and painful, but I kept at it because it was the one thing I could do for my girl…I mean, I couldn’t keep her safe in me. So this was it. I remember having to deal with clogged milk ducts every single day for the first four months of pumping, and although I was thankful to be able to provide this nutrition, I seriously cried and almost quit every other day.

Another thing I recall vividly was the pain from my c-section. That pain is no joke. I am thankful for a helpful husband who was there for me the entire healing process.

Every day we went to visit our little girl, even if we could only stay for an hour or so. When I left the hospital, I vowed she would not go a day without her parents by her side, so she didn’t.

As I sit here writing this, trying to recall all the ups and downs we went through…I struggle because it all seems like a blur from here. I remember in the beginning weeks, we learned how to “care” for her. We changed her diapers, and checked her temperature. Soon we became comfortable with holding her each time we visited. There were tons of wires and tubes connected to her, it was always a to-do to get her out, and I was afraid to hurt her.

Each visit we looked forward to hear how many oz she had gained and learning of the next accomplishment. Our focus shifted from hoping for a clear brain ultrasound of brain bleeds, to reducing the oxygen support on the ventilators, and then onto feeding. I can never forget the ABD’s of the NICU…Apnea, Bradycardia (Bradys), and Desaturations (Desats). The monitors would beep incessantly every time my girl’s breathing slowed too much, or her oxygen levels went too low, or her heart rate slowed too far down. And it happened A LOT. All of these conditions are so common for micro preemies, and all are so scary. I remember that Lucy had several blood transfusions, countless blood draws, sugar level checks, IVs, x-rays and ultrasounds, so much that I honestly cannot remember it all anymore. One of the hardest things was that she would have one leap of progress one day and then she would take two steps back the next day. It was truly a test of strength and patience.

A moment I remember vividly is when I had gone to visit my girl for a feeding. She had struggled to take from a bottle, and the most she had ever taken was 60 ml, that is 2 oz. She was nearing her due date at this point (when she would have been due if she were born full-term), and I remember having this gut feeling something was wrong. She was quieter than usual, and less active. I got her out of her crib and held her on my bare chest. She looked into my eyes and I instantly felt so much love and sadness at the same time. Here was this little girl that I loved so much but could not take away what was bothering her. I think this was one of the moments that I felt what people call “mother’s love”. Call me crazy, but the look in her eyes seemed like they were saying, “please, something is wrong. help me.”

I told the nurses I felt something was “off” and I waited for the doctor’s rounds. They initially thought it was normal behavior but I pressed and after doing some bloodwork, they found that she had a UTI. Thankfully it was not more serious, but I am so glad I stuck to my gut here. Mamas, listen to your gut.

The time came where all she needed to “learn” was to eat from a bottle before she could come home. Her heart and lungs were fairly stable at this point, which is such a blessing because many preemies are not as fortunate. But, the feeding never progressed despite all of our attempts and I struggled with the idea of going through with the g-tube surgery. Eventually, a nurse, whom I respected very much, said to me, “Mary, this isn’t no feeding issue that will clear in two weeks. You might as well get the tube so you can get your girl home”. She was right, and so we scheduled for the g-tube surgery the following week.

I would like to say the surgery went without any hitches but that wasn’t the case. During post-op, she had a hard time “waking up” from the anesthesia. It was significantly longer than anticipated, and when they did remove her breathing tube, she “clamped down” and her airway closed. They had to reintubate her and place her under sedation to allow the swelling in her airway to go down. This was a terrifying moment for both my husband and I. Here, we finally started to feel like parents…and yet, here we were…facing the thought of losing our little girl.

Thankfully, the second attempt was successful with the help of some steroids and breathing treatments. It was about a week or so later that we brought our little girl home, oxygen tank, monitors, and feeding pump included. We survived our 148-day long NICU journey.

Parenthood, Pregnancy, Trauma

Life Before Lucy

by admin January 15, 2019

After I graduated with my Masters, my husband received a salaried position in Charlotte, NC and we packed our things shortly after. See, before this we grew up in Central Florida. Yes–we lived just 15 minutes from Disneyworld, and No–we did not always go. But we loved having the option to go. My husband and I had been together for 7 years before we got married. We had a beautiful wedding in 2015 and began our newlywed journey in a new town.

I fantasized that this relocation was going to be this blissful journey… I mean, who wouldn’t? We were living in the charming Charlotte city. Well, it wasn’t. Not even the least bit. I had an extreme case of home sickness. I missed my family SO MUCH. I missed the familiarity. Mind you, I lost my mother a year prior to this move, and we were very close. I had a hard time finding work because a lot of the licensing requirements were vastly different from Florida and it was a lot of hoops that had to be jumped through.

So there I was, academically inclined and without anywhere to go. Things did kind of spiral out of control for me here. I felt extremely anxious and down about life. I did not have any of my family or friends for support, and I was in a whole new town. Some might wonder, what about your husband? Well, he was there (most of the time, he travels for work). But, he could only be there so much, he was adjusting himself. And, if I were to be honest, I held a lot of it in…I did not want my mess to be a burden on him.

I sought out counseling and always felt immensely better each time. I was able to find an outlet where I could vent about everything that weighed on me, and it gave me enough peace so that I could refocus my energy on bettering myself.

I was able to navigate the licensing process and gain meaningful employment. This was a game changer and I felt better with the move. But it was not until a year or so later that I changed jobs and began working at a university as a counselor that things really started to feel “good-normal”. The people there have been the most amazing group of people I have worked with, and I am so grateful for this work family.

Then, I got pregnant. It was such a wonderful phase in our lives. I can honestly say I LOVED being pregnant. I mean, despite the constipation and nausea in the very beginning–I was that blissfully pregnant girl that people talk about behind their back. We had just gone on our baby-moon and came back home when I began to have what I thought was intense baby movement. Little did I know, things were about to take a turn for the worst.

It was Memorial Day weekend, and my husband and I had canceled our weekend trip to Atlanta so that we could give our dog, Charlie (our Lhasa Apso whom we had for 9 years) one more weekend of joy. Charlie was diagnosed with Cushing’s (a disease where the body generates too much of the hormone, cortisol) few years back and his health steadily declined. Our wonderful veterinarian also suspected a brain tumor because Charlie also had some unexplained seizures with neurological symptoms. Anyway, that weekend, I was knee deep in sewing a slipcover for our sectional couch (a year long project and I was nesting so it had to be done), when my stomach began to feel funny.

I called my OBGYN office and the nurse told me to rest for a couple of hours and call back if my stomach continued to feel funny. I rested for a bit and called. They told me to go to the hospital and get checked out. I was really reluctant because I did not want to leave Charlie home alone, I did not want him to die alone.

We made Charlie a comfortable bed, filled his water bowl, and gave him a kiss. My husband and I left for the hospital that night expecting to return home in a couple of hours. The doctor had examined me and told me I was 2 cm dilated and had to be admitted right away. Turns out the “funny feeling” was in fact contractions.

We were in shock. I was only 25 weeks and 5 days along. So many thoughts ran through my head. What does this even mean? Is this serious? Why is this happening? Will we be OK? We don’t even have our phone chargers! What about my Charlie?!?

I was transported in an ambulance to another hospital that had a Level 4 NICU. They hooked me up to a monitor and gave me magnesium sulfate (a drug that can stop the progression of labor, but also makes you feel extremely weird, like you are on illicit drugs). It worked though! My contractions stopped and they let me eat some real food. By this time, I sent Johnny home to take Charlie to our vet so he could be euthanized. Thankfully there was FaceTime and I could “be there” for it. This broke my heart. I still cry thinking about this.

Several hours later, the contractions returned and my water broke. Back on the magnesium sulfate I went. Unfortunately, it did not work this time around. My contractions continued throughout the night, each getting a little stronger. I remember lying there quietly (my husband was trying to get some much needed rest) and holding onto the handrail tightly as each contraction came, praying it would just stop at some point. It wasn’t because it hurt, but it was because I knew the more they came, the closer I got to giving birth. I pleaded with the nurse to say that my contractions kept coming (they had a hard time reading on the monitors for some reason).

The doctor examined me and said I was in fact 9 cm dilated, but baby was breached. So off to an emergency c-section I went. Our little Lucy was born and swiftly taken to the NICU. We did not even get to see her. She was 1lb 10 oz, and 13″ long. We had no idea of the state she was in.