by Emily Carbone, High Risk Hope Mom

Being discharged from the NICU is daunting for any parent, especially if the NICU stay has been lengthy and your child is coming home with medical equipment. Your new normal is intimidating, to say the least.

My water broke when I was 20 weeks pregnant and we spent the next three and a half weeks on hospital bed rest. My son, Theo, was born at 23 weeks, 5 days and stayed in the NICU for 113 days. The NICU became our second home and naturally, I leaned on the neonatologists, nurses, respiratory technicians and social workers for information and peace of mind. We were extremely lucky with Theo’s outcomes but still had issues we would need to deal with following discharge including chronic lung disease, Rickets, and retinopathy of prematurity (ROP). Theo came home on oxygen, a pulse oximeter and an apnea monitor…enter our new normal.

Home
Bringing home a preemie is scary. I cried leaving the hospital for the last time because I didn’t want to leave the safety of our NICU world. I was scared I wouldn’t be able to care for my son adequately or use the medical equipment correctly. My fear lessened as I became more comfortable using the medical equipment, asking questions and trying to understand what was going on at ALL* of our doctors’ appointments. But it’s overwhelming, and it’s okay to admit that. Your first few months at home will include doctors’ appointments, appointments with home health aides, social workers, early intervention specialists and a lot of adjusting.

Living Life
As Theo grew stronger and the medical equipment was no longer needed – best day ever not having to deal with sticking a Pulse Ox probe on your baby’s tiny toe – we learned about resources that would carry Theo through his toddler and preschool years, and onto elementary school.

Theo went to a medical daycare and a special educational program through our public school system for preschool. He received therapies, one-on-one education, and medical attention when it was needed from nurses at school and daycare. As time went on and he grew out of his medical issues, we were discharged from our endocrinologist, our ophthalmologist, our GI doctor and finally our pulmonologist. Moving to elementary school was challenging but we found a great charter school that can give Theo the education and therapies he needs. The transition to kindergarten was difficult for us because the public school system has limited resources as far as individualized education for special needs children. We utilized contacts and resources and were able to find his current school.

Today, Theo is thriving! He is a happy and sweet 7-year-old in first grade. He has a great sense of humor and adores his family. He loves monsters and french fries. He is also autistic and developmentally delayed. He is a challenge and we happily accept his challenges because they make him, him. We deal with behavioral problems, delays in speech and other milestones. These issues may be present his entire life, but he’s worth it. I’m proud of him defeating every odd thrown at him and fighting for all he’s accomplished.

Being a preemie parent changes you. Watching your baby go through horrible pain, uncertainty and struggle changes you in a way I can’t describe. It’s taken me years to really deal with the emotional aftermath of our experience, and every day it’s right at the surface. What we went through is seared in my brain and affects every aspect of my life. Until recently, I’ve felt very overwhelmed by our experience on bed rest and with Theo. I’m getting better at letting other people help me and enjoy the life we have worked so hard for, and I would go through it a thousand more times if it meant we got Theo.

Tips for Life After Discharge

• Utilize your Social Worker. Have them make all of your post-discharge appointments. It makes life so much easier when you’re not calling to schedule.
• Teach your family. Teach other family members how to use any medical equipment your child might have. The more people who are comfortable with the equipment, the better.
• Ask questions. Takes notes, ask questions, discuss the next steps with all of your doctors and therapists.
• Enjoy your baby! You and your baby have made it so far. Don’t forget to enjoy the time you have with him or her.
• Keep adjusting. In my experience, life with a preemie has never gotten easier, just different. Theo’s care is still a full-time job and one that you really have to stay on top of. Use the resources you have, ask other preemie parents about their experiences and keep advocating for your child.
• Get help for yourself. It’s suggested preemie parents are more likely to develop post-traumatic stress disorder (PTSD) following birth. Talk to someone and seek help for yourself. It’s so incredibly important.
• Use your resources. Every contact, social worker, child life specialist, and fellow preemie parent may have knowledge of a therapy, treatment, etc you may be struggling to find.

*Preemies have numerous doctors’ appointments following discharge and for years afterward. We followed up with six doctors monthly for over a year, not including therapy.

by Amanda Williamson, HRH Mom

My husband and I initially thought that we wouldn’t be able to conceive, so when we found out I was pregnant, we were shocked and excited all at once. At my first doctor’s appointment, when they told us we were having identical twins, we were feeling twice as shocked. Little did we know, our journey to bring our twin girls into this world was going to bring us many of moments of shock and surprise.

At 11 weeks, I experienced two subchorionic hematoma hemorrhages while traveling out of state. At 16 weeks, our high-risk OBGYN doctor said it looked like we were heading for a diagnosis of Twin to Twin Transfusion Syndrome (TTTS) due to our babies having two different levels of fluid (7 [Audrey] and 2 [Riley] ). TTTS is when twins share unequal amounts of the placenta’s blood supply due to shared blood vessels, resulting in the twins growing at different rates. We didn’t yet qualify for a TTTS diagnosis because to qualify for a Stage 1 TTTS diagnosis, there has to be an imbalance of amniotic fluid, with a small amount (<2cm) around the donor twin and a large amount around the recipient twin (>8cm). At this point, one of the twins qualified and the other did not. The only thing we could do was wait.

On July 21st, at 17 weeks gestation, we were diagnosed with Stage 2 TTTS. We now qualified for fetal laser ablation surgery. Due to previously having bleeding with the subchorionic hematomas, as well as having an anterior placenta, and not yet being past 18 weeks gestation, my case was difficult. Our high-risk OBGYN recommended a fetal surgeon in Pasadena, CA. He was the only surgeon who agreed to do a consult for our surgery, the only way we could save the lives of our girls. On July 25th, 2016, we met with him for our consultation. Baby A (Audrey) had 8.4 cm of fluid and Baby B (Riley) had 0 cm of fluid. He wanted to see if we could hold out a few more days until they were 18 weeks gestation because the outcome would be much better. We would wait as long as possible, while continuously being monitored by the Los Angeles Fetal Surgery center, so the girls could grow and become stronger. On July 27th, our doctor informed us that Audrey and Riley’s TTTS had progressed to Stage 3. At this point, the bladder in Baby B (Riley) and the imbalance of blood flow had started to affect the heart function in Baby A (Audrey). The TTTS laser ablation surgery was scheduled for the following day. During this surgery, the doctor used a tiny laser fiber and the laser energy was used to stop the blood flow between the twins shared blood vessels thus separating the twins blood flow, separating the placenta, and allowing each twin to develop independently. The surgery was a success! On August 2nd, 2016, during a follow-up visit, we were told both babies had fluid in normal ranges and Riley also had a visible bladder.

Over the next few weeks, I was placed on modified home bedrest. On Sept. 30th, 2016, I woke up to leaking and some mild back pain. I called my OBGYN and they sent me directly to labor and delivery to be assessed. I took my time waking up my husband and getting ready to leave the house because I had no idea that I was in pre-term labor. Once I was assessed, the OBGYN on call told me I was in pre-term labor and had Preterm Premature Rupture of Membranes (PPROM). PPROM means that prior to 37 weeks, the membrane sacs holding the twins ruptured and the amniotic fluid was leaking. I was only 27 +3 weeks. I was in preterm labor. They were going to try to stop the labor, but I would need to stay in the hospital until I delivered my twins. I was also diagnosed with gestational diabetes.

There were so many feelings when I heard all this news. First, I was scared for my daughters’ lives. Next, I was sad. I would miss my home, my husband and sweet cockapoo, Teddy, who would snuggle next to my pregnant belly every night. And lastly, I felt pure embarrassment. I had no idea that I was in pre-term labor and was mortified that I missed “the signs”.

For the next 6 weeks, I was on hospital bed rest. Falling asleep in an unfamiliar bed, alone, in an unfamiliar place was hard. Getting needles stuck in me multiple times a day was hard, but every time I felt something was hard, I reminded myself that it was all a small sacrifice to be able to hold my beautiful, healthy girls one day.

During my time on hospital bedrest, God placed people in my life that left a permanent memory on my heart. I was blessed with the most incredible nurses, social workers and nutritional staff that I could have ever imagined. On a daily basis, these women made me laugh and smile. On the days when I felt like I was doing nothing but laying in a bed, they reminded me that I was nurturing, growing and loving my daughters. And then there was one evening when I told my nurse that I felt bad for using so many Styrofoam cups and wish I had a huge cup I could just keep refilling and reusing. She told me that they just received a delivery of High Risk Hope Bedrest Baskets. She asked if I had ever heard of High Risk Hope. When I said I had not, she told me that HRH was a non-profit organization, founded by a mom who was on hospital bedrest during her pregnancy. She created the organization to support other mothers on hospital bedrest. She proceeded to bring me an HRH Bed Rest Basket, which included a large insulated cup!

I had an incredible amount of support from friends, family, and co-workers, while on hospital bedrest. People would always ask me, “What do you need? What do you want?” and I never knew how to answer. “What did I need?” I had no idea at the moment. However, HRH knew what I needed. The HRH Bedrest Basket gave me everything I needed without being able to verbalize what I needed. And the piece of that bag that I needed the most? The 2016 HRH Baby Calendar. Daily, I would read the stories of the calendar babies and look at those pictures. The pictures of the calendar babies paired with the stories gave me so much hope.

I spent 42 days on hospital bedrest. I went into premature labor at 33 weeks and had an emergency C-section due to the girls’ heart rates dropping rapidly during preparation for delivery. Both girls were born unresponsive, struggling to breathe, requiring ventilation. Audrey was taken off the ventilator within a few hours, but Riley stayed on for a few days. The girls spent 36 days in the NICU where Audrey (Baby A) was jaundiced, required light therapy and we learned that she was born with a small hole in her heart. Riley (Baby B) had a harder time breathing on her own and experienced bradycardia.

The hardest part of my entire pregnancy was not being able to hold them immediately. I fought so hard for them and waited so long to meet them, all I wanted was to hold them. I remember this feeling crushed my heart and at the same time, I found so much peace knowing I was not alone in this stinging pain I was experiencing. I knew every mother of the HRH Calendar babies had experienced the same stinging pain that I was experiencing.

It was not the pregnancy I always wanted. It was not the delivery I always imagined. And it certainly was not the first few moments and weeks together that I had always envisioned. But, oh my gosh, these little girls are way more incredible that I could have ever dreamed!

by Oneida Diaz-Cadavid

When I learned I was pregnant, I was overcome with anxiety as memories of my first pregnancy came to mind. My first pregnancy came with its challenges, but in the end, I delivered a healthy baby boy at 36 weeks.

As a nurse anesthetist my assignments vary in stress level. Determined not to repeat history, on Monday morning I went directly to my supervisor’s office to inform him of the news. I began doing my part, eating healthy, drinking plenty of water and trying to take it easy. It wasn’t long before history began to repeat itself. By week 7, I began bleeding profusely so we rushed to the emergency room and were told the baby’s heartbeat was great and the bleeding came from a subchorionic hemorrhage. I spent the rest of my week at home off of my feet, taking it easy. At week 14, we decided to go to a private facility to have a gender reveal ultrasound. As soon as I got a glimpse, I screamed with joy, “it’s a boy, it’s a boy”. As the days went on, I started to become overly exhausted as if I were in my 3rd trimester. I knew something just didn’t feel quite right and went and spoke to my manager. I requested to change my schedule to shorter hours and he approved it effective immediately. Monday of my 16th week, only 3 days after speaking to my manager, I was sitting in the operating room when I felt fluid leak out. I immediately went to see my doctor. He performed an exam and the fluid came back inconclusive for amniotic fluid, which is not unusual so early in a pregnancy. He then performed an ultrasound and the look on his face said it all. My heart sank and I could feel the knot in my throat form. He looked at me and confirmed my fluid levels were low. I was scheduled to see maternal fetal medicine in two days already because of my prior pregnancy, so I was instructed to pass along the information and in the meantime, I was to stay home off of my feet once again.

The next several days were full of emotions, confusion, and frankly, just shock. I was sitting around with my water broken at 16 weeks without any signs of imminent labor. I had never heard of such a thing. Everything became a reality the day we met with maternal fetal medicine. After several exams, we were directed to her office. It felt like a scene from a movie because, honestly, how many times do you actually go sit in the doctor’s personal office and not in an exam room? We spent a good part of the hour discussing all of the possibilities, none of which were positive. The biggest point she elaborated on was the risk of the baby and I both passing away due to me developing a systemic infection. My husband looked at me with desperation waiting for me to say something. I dug deep trying to find words. I looked at her and said, “Have you seen miracles happen because I have. I’ve witnessed things that cannot be explained in a textbook.” She replied, “Yes, but very few times.” I stood up signaling to my husband and as we walked out, and I said, “This is going to be a miracle because this baby is going to be just fine.” The car ride home was difficult. The air was thick to breathe. As a medical professional, my husband depends on me to carry us through these moments. I reached for his hand and said, “Everything is going to be fine”. As scared as I was I truly believed that.

Four days passed, and we once again found ourselves in the emergency room. This time we were sent home with the news all the doctors had been preparing us for. The baby’s heartbeat was low, and the active bleeding indicated I was experiencing a miscarriage. We were sent home. I messaged my physician and was told if the pain became intense to head back to the hospital, but in the meantime plan to see him in his office first thing in the morning. The following morning my parents and my husband all joined me to the doctor’s office. He performed another ultrasound and told us the baby’s heartbeat was normal, but the fluid levels were almost nonexistent. It was that moment that he took the time to be very honest and clear but in the most tender way. He again explained the probability of survival was not on our side. He offered to induce labor and end this emotional rollercoaster, which I immediately refused and stated, “If God wants to take my baby it’s his job to end this pregnancy, not mine.” He continued on to gently introduce things we needed to start thinking about. Do we want to see and hold our child if he passes away? What are our beliefs for funeral arrangements if the baby passes away? He introduced things my husband and I had never discussed. I left his office feeling pretty empty inside. Over several days, my husband and I made some tough decisions if our baby didn’t make it. We went through hundreds of names to find a name that would describe him perfectly, regardless of the outcome. We decided on Dominic- belonging to God. It was perfect.

As each day passed, our hope continued to increase that we would make it to “viability”. Viability is defined as 23-24 weeks gestation. At 19 weeks, we met with a second maternal fetal specialist from a different group. Again, multiple exams were done, and it was time for the dreaded face-to-face discussion. This time the conversation went a little different. Despite the lack of fluid, our baby looked developmentally perfect. We learned that the biggest risk other than death was the baby not developing lungs because lung development starts at week 16 and requires amniotic fluid. He ended the conversation saying, “I can’t tell you this is going to be easy, but it’s not impossible. I have seen one other patient rupture this early and make it to 34 weeks and deliver a healthy baby.” That was all I needed to hear. We discussed the plan to be admitted to a high-risk obstetrical hospital in Tampa at week 23 and hope I remained pregnant without complications until week 34, at which time they would schedule to deliver me via C-section, as the risk for infection increases dramatically at that time. I walked out with such a high for the first time in weeks.

In the coming weeks, we started getting things ready for me being an hour away from home. My mother and mother-in-law were now living in our home full-time helping us with our 18-month-old. As things were looking on the up and up, they suddenly came crashing down once again. At week 21, I was rushed to the hospital with suspected placental abruption, a risk of not having amniotic fluid. On complete bed rest, things once again started to subside. The baby remained safe. After several days of being hospitalized and noticing that even a simple walk to the bathroom five feet away caused the bleeding the start up again, it was decided that I would be on complete bed rest and would remain hospitalized until week 23, at which point I would be transferred to the high-risk obstetrical hospital.

Week 23 had finally arrived. VIABILITY. The word I never ever want to hear again. I had felt like my baby meant nothing to many providers because we had not reached that mark until this week. It was a bittersweet trip to the new hospital. I knew my baby now had a chance, but I was now one hour away from home, which meant a lot fewer visits and a lot less time with my 18-month-old. I was given my first shot of steroids in case the baby decided to arrive early in hopes of helping lung health for the baby. Our ultrasound revealed the baby weighed 508 grams, just 8 grams over the “requirement” to resuscitate a baby. This was a huge milestone to us because now our baby truly had a chance at life.

As the weeks went by, so did the milestones. Along with all the good came all the stressors of maintaining a home an hour away from a hospital bed. Financially things started getting more difficult as I had been out of work now for months and some of the initial medical bills started coming in. I had an amazing support system at work that donated vacation time to help with my income loss. Being so far away, the number of visitors also decreased. I remained with a core group of visitors each week, for which I will forever be grateful. I looked forward to the non-hospital meals my visitors brought me. I spent my hours in front of my iPad on Facetime watching my son play at home. My mom would bring my son a couple of times a week for a few hours as he didn’t tolerate much longer than that cooped up in my room. My husband traveled to work 20 minutes from my hospital every morning, another 45 minutes home to spend some time with our son only to turn back around and drive another hour so he could spend the night with me at the hospital. This took its toll on everyone involved. After six weeks of total confinement in my room, I was finally given wheelchair privileges to go outside. My first time outside I was blown away to hear all of the birds chirping and the leaves blowing. My mom pointed out that those birds and leaves are always there we just never pay any attention to them. It was like my senses were heightened. Every several weeks I had a scheduled ultrasound and each time the fluid levels were negligible, and the baby’s growth continued to decline on the charts. I continued leaking fluid throughout the entire pregnancy with intermittent episodes of bleeding.

At week 30, I began having contractions and was transferred to labor and delivery where I received a rescue dose of steroids for baby’s lungs and a large dose of magnesium, which is used to protect baby’s brain in case of imminent delivery. I have never felt so awful in my life. The magnesium takes everything out of you. You feel like you have the worst flu of your life in addition to having your face in a fire pit. My entire body felt like fire and I was immobile in the bed. Things once again settled down and I was transferred back to my room. The next several days seemed to repeat themselves as I had intermittent contractions and bleeding. At the end of week 31, I was once again transferred to labor and delivery and received my last rescue dose of steroids and another round of the miserable magnesium. Despite the contractions’ intensity improving they never stopped this time, but I was told if I was in true labor the magnesium would not have stopped the labor. I wasn’t completely convinced. As they moved me back to my room, I told my husband something wasn’t right.

The next morning, officially 32 weeks, an ultrasound was done, and we were told the baby was now only measuring 3% on the growth charts. I had a record amount of amniotic fluid, still low but enough to catch an image of our baby’s face for the first time ever. It was the best birthday present my husband could have imagined at the time. He went off to work but before leaving I told him, something isn’t right so be on standby as I continued to have contractions. By 8pm, I was being pushed down to the operating room, as it was confirmed I was in labor. As ready as I was for this rollercoaster to come to an end and for me to be able to see my baby, it was the first time that the reality of my baby not surviving really hit me. It was in that moment that I realized I had been in denial for so many months. I had never felt so scared. My husband entered the room and I couldn’t even smile. I knew that in the next few minutes our life would change forever. The room was covered in hospital staff reporting off to each other about my situation. You could hear everyone’s gasps each time someone heard I had been ruptured for 16 weeks. I wasn’t the only one in the room full of fear. You could see the fear on the staff’s faces. The incision was made, and my husband squeezed my hand as we both prepared for the moment of truth. After some pulling and tugging, we suddenly heard Dominic’s screams. I could finally take a breath and the tears poured out. I turned my head to watch all the staff surround Dominic. I caught a glimpse my baby. He was quite discolored which I knew meant his lungs were not working very well just as they had warned us. They brought him over literally for a quick second, allowed me to touch him before rushing off with him to the NICU. I sent my husband with strict instructions to not leave his side and not to worry about me that I would be ok.

As they finished closing me up, I felt so powerless being so far away from my baby and not knowing what was going on. At one point, I received a video of the baby on my phone and I could see that he was pink and doing ok. Before going back to my room, I was wheeled to the NICU to catch another glimpse of Dominic from my stretcher. At this point, he was receiving some respiratory support from a C-Pap mask, but my little guy looked great otherwise. By morning the phone rang, and we were informed that Dominic had to be placed on a ventilator because he was struggling to breathe. We rushed down to his room to see him. It was my first time really being able to see him. He was so tiny, just 3lbs 8oz. He was covered in medical equipment. As a medical professional, it’s hard to shut it off and just be a parent. I looked at all the monitors and interpreted all of the data. I knew even on the ventilator he was struggling. Because Dominic’s lungs were so underdeveloped, he had to have a special ventilator referred to as an oscillator. This machine makes a loud rattling sound as it delivers breaths to the baby, loud enough that the baby had to wear earmuffs to protect his hearing. The next several days were touch and go. One of Dominic’s lungs ruptured, and they had to insert a chest tube. Dominic’s lungs were so weak they had to use a special gas called nitric oxide to help his oxygen levels increase. One of his neonatologists came in to talk to us and explain the situation. I heard all of the medical talk, but what I saw was something different. I had seen that look before. It was the same look the doctor had when he told me I had ruptured at 16 weeks. It was the look of tenderness and sadness. He held my hands ever so gently as he explained the gravity of the situation. As he walked away, my husband looked at me for words of hope. Again, I had to jump into action, “Honey he’s going to be ok. God didn’t let us get this far for nothing.” As the days passed, Dominic started to improve. I was able to hold him for the very first time nine days after he was born with all of his tubes and IVs still attached to him. After 11 days he was finally able to breathe on his own off of the ventilator. The next seven weeks consisted of weaning Dominic off of oxygen slowly, multiple blood transfusions, and getting him to suck from a bottle nipple. At 40 weeks gestational age, Dominic was still having trouble taking milk from a bottle, so we opted to have a feeding tube placed. At the same time, a special cast was placed around Dominic’s hips and legs because he had been diagnosed with hip dysplasia from the lack of fluid during the pregnancy. Finally, at 41 weeks gestational age, nine weeks after he was born, we were able to take Dominic home on low dose oxygen and a feeding tube for meals. Once home, the transition was very difficult, as I was required back to work 2 days after bringing Dominic home. My sister, a registered nurse, and my mother were able to care for him while I was at work.

Dominic is currently six months old, off oxygen, and doing amazing. His feeding tube was out in less than a month and he is already learning to eat purees. His hip cast has been switched to a removable brace, which he is expected to use until age two while he sleeps. This week he has become a pro at rolling over. He is always full of smiles and rarely ever cries. Dominic Andres Cadavid is our miracle baby.

by Dr. Osarumen Nicole Doghor reproductive psychiatrist at Texas Children’s Hospital

In my work as a reproductive psychiatrist at Texas Children’s Hospital, I have noticed families struggle with emotion regulation, interpersonal relationships and self-identity while experiencing reproductive issues.

Specifically, I would say the top five experiences that families exhibit are grief, anxiety and depression, relational strain, insecurity and shame and, finally, hopefulness.

It can be difficult for others to understand the immense sense of sadness and loss for women experiencing infertility. First, there is the primary loss of not having a child, as well as the secondary losses of finances for treatment, strain in relationships and lowered self-esteem. To discuss the primary loss, one needs to understand infertility as “blank mourning”. In essence, this is a term we use to describe the mourning for a wished-for experience; making it difficult to cope as there is no specific person or object to mourn. However, women going through infertility describe the same symptoms of bereavement one would have after experiencing a loss. For instance, many women describe an intense sense of longing when seeing other pregnant women or children, in the same way, someone who has lost a loved one would feel when reminded of their loved one.

Grief is a normal experience that women struggling with reproductive issues may encounter. However, it is important to note that women struggling with reproductive issues may suffer from more severe psychiatric symptoms, including anxiety or depression. Depression can set in when a woman starts engaging in isolation, excessive tearfulness, thoughts of not wanting to live, stops participating in previously enjoyed activities or feels shame and guilt. Some women begin struggling with insomnia, fatigue, or poor focus and concentration as symptoms of either depression or anxiety. Women can become excessively worried and anxious during different phases of infertility treatment as well.

I have also noticed that relationships can be strained during reproductive struggles and at times therapy can be helpful to discuss the grief that both partners are experiencing. Couples therapy provides an avenue for partners to be open about feelings of disappointment and pain in a nonjudgmental environment with coaching on how to communicate this distress to one another. Oftentimes people notice their relationship with friends and family feel different. They become tired of answering questions about their fertility status. They may find it difficult to attend birthday parties of small children and baby showers. This could lead to distancing oneself from certain friends and family members, limiting their social circle. These social challenges may be linked to underlying insecurity and shame. Women experiencing infertility may find it hard to see themselves in the way society defines womanhood. I have heard some women describe feeling “defective.”

Lastly, I have seen tremendous hopefulness. I have found women and couples struggling with reproductive issues to be some of the most determined people, with characteristics of strength and perseverance. I think balancing the hope is very difficult because women, their physicians, and partners tend to focus on the hope of eventually having a child. What I have found remarkable in my experience, are the individuals who can find a balanced view of hope in whatever circumstance they find themselves knowing they will survive and work towards building a meaningful life.

by Angie Lemont Bresnahan, HRH Mom and Volunteer

I gave birth at 28 weeks on February 20th to our son Beren Bazin, weighing 2 lbs. 9 oz., and our daughter Adalyn Elaine, weighing 2 lbs. 11 oz. They were the most beautiful people TJ and I had ever seen. They were the tiny, precious gifts I’d dreamed of for so many years. Adalyn had a few complications at birth but Beren was doing great and as strong and healthy as you can hope for with a premature birth. So you can imagine our shock and heartbreak when we lost our son just five days after he was born. It took a month to learn the cause of his death; an autopsy revealed he had an undetectable infection around his heart. We treasure the few days we had to hold Beren and show him how much we love him, and we think about him and miss him constantly.

I have always been open about my journey to Motherhood. From infertility to grief. I believe that sharing my story can help others. Trying to find the right words to say to grieving parents can feel impossible. They have just lost their baby. No words you can speak will make the pain go away, but the right words can bring comfort. As a mother that has lost a child, I have heard it all. The truth is no one knows what to say to a grieving mother because everyone deals with grief differently. I hope in reading this, it helps you feel more comfortable about what to say to someone that is grieving the loss of a child.

Platitudes. Don’t use them. Even though your words come from the best of intentions. What you think are the right words, can hurt the most.

“I know how you feel. I lost my Grandfather.”

Comparing stories causes more harm than good. Every story is different and grief is different for everyone. Never tell a bereaved parent you know how they feel. The truth is nobody knows how anyone feels. Everyone grieves differently.

“Over it”

We can’t control feelings. No one can. It’s how you feel. Trust me, nobody wants to feel this way. We have become a different person. We will always be a grieving mother. We just get better at not showing our feelings.  Please be patient with us. We have to find a way to exist in a world without our future dreams and plans for our lost child. The sad truth is we will never be “over it”. Those words should never be spoken in this kind of situation. We will never get over losing our child. We will heal, but the scar will always remain.

“At least it happened early and you didn’t know your baby.”

A mother becomes a mother the moment she finds out she is pregnant. She dreams of birthdays, holidays, and watching her baby grow. No matter how far along she is, she is still a mother. We carried our baby in our womb. Now that we can’t carry them in our arms, we carry them in our hearts. When a child dies all those dreams turn into wonder. A life of wonder. We wonder about our baby instead of watching them grow up. What would the baby have enjoyed? What kind of person would my baby have become? Holidays will be difficult. Keep them in mind during these times. Send a card on Mother’s Day, say something comforting on Christmas, the child’s birthday, or the anniversary of the child’s death. Not just the first year but every year. Put a reminder in your phone and let them know you are thinking of them. Random times as well. The mother will think of her child every day of every year. It’s nice to know others are thinking of them and us as well.

“The baby is in a better place.”

To a mother, there is no better place for her baby than in her arms. Period.

“You can always try again for another baby. Be thankful for the children you have. You can always adopt.”

In some cases, these might be true. But no baby will ever replace this baby. Another 50 babies won’t be able to replace the one who has gone. There will always be a hole that will never be filled. We are so blessed to have Adalyn. She is her own person and a part of her is missing as well. They can not be compared as they are two different babies.

“I know it sucks but you have to move on.”

A grieving Mother will never move on. In time, it will become more bearable. It will have less impact on her daily routine. She will never be herself again. She will find a new normal. She will have to learn to live in a world where her baby doesn’t. Just give her time. Let her know she can take as much time as she needs. The grief surrounding the loss of a first-degree relative has been shown to decline slowly over the first 12 months post-loss. However, the “normal” grieving process surrounding pregnancy loss does not decline until after two years, with one in-depth study finding 59% of parents were still struggling with grief symptoms at a high rate of occurrence after those first two years. Other grief specialists estimate the average grieving process for pregnancy/infant loss to decline after 4 years have passed. It has been 2 years and 9 months since Beren died and it still affects me every day. Sometimes grief is delayed. Mothers can be busy making funeral arrangements and hosting family and friends that have come from out of town. People often distract themselves with tasks to keep their minds busy. Then after people have left town, stopped calling and coming by, that’s when it can hit them like a ton of bricks. When the loneliness will set in.  They may feel like the world has moved on and forgotten about their loss. Remember they deal with this every day. Not just the first few weeks, months and year after it happened.

“You need to get out of the house.”

It may be a while until she is ready to attend a gathering. Let her know it’s ok to not attend another’s baby shower, child’s birthday or family event. Keep inviting her. She may not go but doesn’t want to feel like she is not wanted. She will when she is ready. So try not to be offended.

“This was God’s plan.”

It might have been God’s plan but it wasn’t theirs. Religious beliefs might be unclear, uprooted or challenged during this time. Try not to push faith on them. Ask if they want to talk about religion or pray with you before assuming.

What you can do is…

Affirm the baby.

Ask the Mother is she wants to talk about her baby. I love talking about my son. How cute his little toes were. How hairy he was. The noises he made while lying on my chest. Use the baby’s name. I love hearing Beren’s name. Saying his name means you remember. We do not want our children to be forgotten. Just having someone listen to me talk about him is helpful for me. By talking about the baby directly you can help the mother acknowledge the baby and help them express their feelings.

When you can’t find the right words.

If you can’t find the words to say, just sit and hold their hand. “I’m sorry I don’t know what to say to you. But I am here to hold your hand and listen”. It’s ok to cry with us as well. We know you love us and our loss may be hurting you too. Tears are not a sign of weakness. Our bodies are designed to cry when we are in pain.

To a Mother, there is no reason ever explained why she can’t have her baby. Mothers may feel guilty or wonder if their bodies failed them. The word “why” will be used often. Why did this happen to me? Did I do something wrong? I am Beren’s Mother. I was supposed to protect him. That was my job as his mother. Don’t try to offer an answer. Tell them you miss them too. And that they are still good Mothers.

It’s never too late to reach out. 

No matter how long it has been since the death of a child, it’s never too late to reach out with condolence. The power of social media can help in this aspect. I remember getting a Facebook message from a woman I went to high school with. I live in Florida and she is still in Maine where I grew up. She wrote to me and simply said she was sorry for our loss and she was thinking of me and my family. That meant so much to me. I hadn’t seen her in over 19 years.

Ask them if there is anything you can do. They might not know what they need but still, ask. Offer to help out with chores. Mowing the lawn, picking up dry cleaning or grocery shopping. Never just stop by unexpected, always ask first. It may take some time before they want to have company.

My wonderful friends had a bench placed in memory of Beren. It is a place I can go to and feel close to him. I love when I hear that my friends have taken their kids there. Beren’s grandparents also had a tree planted for Adalyn. Offer to plant some flowers or a tree in memory of their baby.

To grieve is to love. Loving someone that is not here is so hard. I can’t show Beren how much I love him.

The list above is not exhaustive nor is it right for everyone. Traumatic grief is complicated and different for every person. If you’re not sure you’re doing the right thing then just ask them. They might not know what they need. They’re still your loved one, they’re just really hurting right now and might be acting a little differently. Tell them, “This must be so hard for you. Please let me know how I can help.” Above all, show your love. Show up. Say something even if it is just an “I’m sorry”. Do something. Listen. Be there to hold our hands. In the journey of grief, there is no destination. It is long, sad, and lonely. Tell them “you don’t have to go through this alone”.

Please, above all, say something.

Angie has worked closely with High Risk Hope to implement our Bereavement Program. We have begun offering this program at St. Joseph’s Women’s Hospital. Our Bereavement Box is available in our online store.

 

by Angie Lemont Bresnahan, HRH Mom and Volunteer

When my friends at High Risk Hope asked if I would be willing to write a piece about my son, I was so honored. As I started reading through many pages I had already written in the past about him, it became clear to me that my story was going to be harder to convey than I thought.

After a round of IVF and 3 surgeries, I was finally pregnant. TJ and I were thrilled to find out we were going to have twins. I had an easy pregnancy until my 25-week appointment on January 28th. I was sent straight over to St Joseph’s  Women’s Hospital due to a shortened cervix and was placed on hospital bed rest, where I was to remain until my due date in May.

On February 20, 2016, I gave birth to my twins at 28 weeks. Beren came first, weighing 2 lbs 9 oz. Adalyn followed weighing 2 lbs 9 oz. They were the cutest little things we had ever laid eyes on. The next few days were spent going back and forth between Beren and Adalyn’s rooms. Holding them was the best feeling I had ever felt. I loved rubbing their soft hair on my chin while smelling their soft skin. I loved the way they would squeeze my finger as we stared at each other. I would whisper how much I loved them and that I would take care of them and be the best mother I could be. My two babies that I had always dreamed of were here, and we were over the moon. Adalyn was having some complications but Beren was in good shape for being born so prematurely.

5 days later on February 25th, my life would change forever.

I was upset when I got home from the hospital that night. Beren was crying when I left and I felt so guilty for leaving. Why was he upset? Was that his way of asking me to stay, “No Mama don’t leave me, this is all the time we have left.” I kept thinking on the way home how much I wanted to stay, but something inside me told me it was time to go. I think that was God’s way of protecting me. He didn’t want me to see what was about to happen.

TJ and I were upstairs when the phone rang. I didn’t recognize the number. I wasn’t going to pick it up, but something inside me told me to. It was Beren’s neonatologist. There was a tone in his voice. I don’t remember exactly what he said, but I remember him saying something about Beren’s heart rate and asked if we would come to the hospital. The drive there took what seemed like forever. TJ was talking but I couldn’t find any words to respond. That was the longest drive of my life because I didn’t know what was ahead of me.

The long hallway in the hospital that lead to the elevator seemed longer than ever. The doors opened to the NICU and we ran past security yelling, “they called us,” as the woman at the desk tried to stop and ask for our NICU passes. As we turned the corner I saw the crash cart outside his room. I felt like someone had punched me in the stomach. I walked into the crowded room. I saw him lying there as the doctor was giving him chest compressions. They continued trying to revive him until we got there, instead of stopping after they knew he was gone. Looking back, that means so much to me. He had caring hands on him and he wasn’t alone. They waited until we got there so we could be there when he took his last breath. The doctor turned to me as if in a movie and said, “I’m sorry, we did everything we could.”

I started screaming. I kept screaming, “my son is dead.” I looked around the room at the faces and I could see the pain in their eyes. I sat in the same chair I held him in just a few hours earlier and just stared at him. I was trying to memorize his face. I couldn’t believe this was going to be the last time I was going to hold my son. I rubbed his hair on my chin and it felt so different. I held his little hand that didn’t squeeze me back. That’s when the numbness set in. That numbness still hasn’t gone away. They asked me if I wanted him baptized. The Chaplain said a few words and placed holy water on his forehead. My beautiful baby boy was gone.

As the days went by, we waited for answers. What happened to our little boy? The staff was just as baffled as we were. He was fine when we left an hour before. They couldn’t figure out how his health declined so quickly when he was doing so well. It took a few weeks for us to get answers. Beren’s autopsy stated he had an infection around his heart. We still don’t know how he got the infection.

Adalyn remained in the NICU for 95 days. As she fought to get stronger, I watched all these parents leaving the hospital with “It’s a Boy“ balloons. They were all so happy. Baby boys heading home. All the while I couldn’t take mine home. Why? I kept thinking it’s just not fair.

One Last Goodbye.

On a rainy day a few days after we lost Beren, I received a call from a hospital coordinator saying that he would be picked up that day by the funeral home. Later that afternoon, I was leaving the cafeteria to go back to Adalyn’s room. Up ahead, down that same long hallway, I heard the employee access only door open and two nurses walk five steps across the hall and enter another employee access only door. They were pushing a stretcher with a small blue blanket on it. It didn’t hit me until I was already in the elevator. I felt like someone had punched me in the stomach, again. I went back down to the first floor and ran to the doors I had seen the stretcher go in moments before. As I banged on the door, a doctor came out. I asked her if that was Baby Boy Lemont. She said she believed so. We checked with the security guard and he confirmed. That was my son. I asked if they had already left for the funeral home and they had.

I headed back up to the NICU and collapsed on a chair outside and sobbed. I didn’t want to go back to Adalyn’s room right away. I didn’t want her to see me so upset. I stared out the window searching for the hearse. One of our nurses, who I am still close with today, thinks it was Beren’s way of saying goodbye one more time. I just so happened to be walking up to those doors and look up for those 3 seconds it took the nurses to cross the hall with him on that stretcher. What are the chances?

The day Adalyn was released from the hospital was bittersweet. We were so excited to be bringing our little miracle home after 95 days. But we were leaving the only place Beren had ever been. And we were leaving without him.  After l left the hospital I was afraid I would lose my memories of him. I was afraid over time I’d forget the way he smelled and the way his skin felt on mine.

I still lay awake at night and can’t believe this happened. My son was taken from me. Why? I still can’t wrap my head around it. For the first few seconds when I wake up every morning I think, “Was this all just a dream?” Then reality sinks in and I remember that he is not in the next room.

I often wonder, what’s it going to be like for Addy? Will she feel him, see him, and talk to him? Will she feel like something is missing? Will he come to her in her dreams? Will I find her talking to him while she plays? I hear stories of a living twin seeing their sibling when they are young. Too young to explain the visit to an adult. As I watch her grow and achieve milestones I wonder about him. Who would he look like? Adalyn looks just like her father. Whose personality would he have had? Would he love books and swimming like she does? Would they act the same or be total opposites? I am left with a lifetime of wonder.

The grief process is very unpredictable. It comes in waves and is very strong. Some days I can get through the day without crying. Others, it’s unbearable. I know that he would want me to be strong for his sister. She is a perfect little girl. Despite the odds with being born so prematurely, she is perfect in every way. She is smart, caring, and full of life. Just like I know he would have been.

I hope writing this article will help others. Helping others has been so therapeutic for me. Death is not a subject people like to talk about. Especially when it comes to children. 1 in 4 women will experience miscarriage, infant loss or stillbirth. Many celebrities are breaking the silence and sharing their stories as well. We don’t want our children to be forgotten. We won’t let them be forgotten.

Resources that Angie has found helpful through her journey: Empty Cradle, Broken Heart, by Deborah L. Davis, It’s Ok That you are Not Ok, by Megan Devine, https://stillstandingmag.com/

 

 

Please help us welcome Kate Brant as our new Program Coordinator.

Kate has a B.A. in Psychology from the University of Miami, her M.S. in School Psychology from Nova Southeastern University and her M.S. in Clinical Psychology from Nova Southeastern University. Over the past several years she has developed a strong interest in program development while working in the hospital and private clinical psychology practice settings. In South Florida, she worked with both Nicklaus Children’s Hospital (formerly known as Miami Children’s Hospital) and Joe DiMaggio Children’s Hospital, helping to create group therapy programs and assisting in the development of the psychosocial piece of their multidisciplinary cardiac transplant program. Most recently in Colorado, she took on the role of Group Therapy Program Coordinator at Legacy Comprehensive Counseling and Consulting, where she researched, implemented, and managed multiple group therapy curriculums. Kate has been volunteering with HRH for the past year, spending over 100 hours assembling bags and assisting in various projects.

Kate brings a unique experience in building relationships and engaging with hospital staff, including nurses, child life specialists, physicians, and administration, to help implement programs that benefited both patients and their families. We know she will be an incredible member of the HRH team and we can’t wait to see the amazing things she does with HRH in the future.