For all parents, be physically present and be involved in their daily care like changing their diapers, feeding time, and bath care. Your presence alone means so much for your little one in overcoming this traumatic and stressful moment in their life.
Don’t be afraid to let the doctors and nurses know that you want to be involved w/ their care while in the NICU. Advocate for your baby, if something doesn’t feel right to you, let your health care team know, and ask a lot of questions especially for first time parents and don’t stop asking these questions until they address your concerns.
For mamas who want to breastfeed, let your health care team know so they can help you and your baby with your breastfeeding journey. If you are a first time mama and want to breastfeed, and doesn’t know how to do it, or is having difficulty with your milk supply, please ask your health care team for a lactation consultant who can help you address all these issues.
Having a preemie baby is HARD. It causes emotional and physical toll on your body, and it is OKAY to seek therapy, and reach out to your social workers in your NICU for support.
For first time parents, don’t be shy or hesitate to ask your health care team for help if you don’t know how to do basic care for your baby. They’re more than than willing to teach and show you how to do stuff like putting on a diaper, feeding and bathing your little one before taking your little one home.
For all daddies, please be supportive to your partners. They need you more than ever. Giving birth is one of the hardest and traumatic things a woman’s body goes through. Let alone delivering a premature little baby. Please make sure your partner can physically and emotionally rely on you, and be involved in caring for your preemie baby. You and your partner are in this together.
Talk to your baby. Tell them how much you love them, tell them stories, read them books. They may look so tiny and fragile, but I believe that they listen, and gets familiar with your voice, and this alone helps them stay strong and keep on fighting.
Lastly, preemie babies are built different. They’re unique, and one of the strongest people I know.
When my water broke at 25 weeks, I was terrified. My worst fear was that my baby wouldn’t survive. When the specialist completed his exam and all of the tests, he explained that there was not much hope for survival, my son’s cord was extremely short and he was not sure how long he could survive in utero with little to no amniotic fluid, but he wanted to try to sustain the pregnancy as long as possible to give my son a better chance.
I went into labor again at 27 weeks and the doctors were afraid of the risks to the baby, so they allowed me to deliver. My son was born at less than two pounds and was immediately rushed to a waiting team and into the NICU. I barely got to see his face. The doctors found that not only was his umbilical cord extremely short, but it had ruptured at some point and there was a huge clot blocking the rupture. They were not sure what the effects would be on my son. I was in one hospital and my baby was being sent to another hospital and the terror was overwhelming. I had no idea if he would survive.
When I was finally able to see him, he was so tiny and there were so many wires and tubes that I could barely see his body. The doctors seemed hopeful but guarded. Within 48 hours he was breathing on his own and things were looking up. I started to think when I could bring him home and not if I could. This brought on an entirely new kind of terror. How do I care for this tiny baby? Less than a week later, the doctor sits me down and tells me my son has a bleed in his brain and needs surgery.
I didn’t know if I wanted to cry, scream, or throw up. Sitting in the NICU crying from fear , a volunteer handed me a card for Graham’s Foundation. She said that they had a lot of information on their site and maybe it could help to answer some of my questions. It was a huge blessing, not only did I find helpful information, I found support. Now I share Graham’s Foundation with anyone that is in a same or similar situation, friends, family, or any stranger that will listen.
My son came home after 72 days in the NICU and is doing so well. There have been some complications, but he has come so far! He is partially deaf and has been diagnosed with a developmental disorder which the doctors believe is related to being a preemie and there may be more effects that we have not discovered yet, but he is happy and healthy.
There was quite some time – years, actually – where I didn’t think that I would ever be a mother. Battling infertility hurt and pushed me in ways that I had never thought possible. After all of the tears, sleepless nights, medications, procedures, and negative home pregnancy tests, however, we were one of the lucky ones who finally got our family. It was part science, part love, and part miracle.
When our baby was born three months early – in Winter instead of Spring, February instead of May – I was faced with an even bigger battle. Our NICU days were some of our highest-highs – three cheers for wet diapers and grams gained – and our lowest-lows – coding machines and delayed homecoming, experiences that still haunt me today. I didn’t know what our future would look like, or even the certainty of a future at times. Our days were long, the nights were longer, and, I didn’t know it, but I was being shaped into the mother I needed to become – one round at a time. After seven weeks, Flynn was finally able to come home.
Our first months together were packed full of many doctors’ visits, as most preemie journeys begin. Constantly being surrounded by medical professionals, there were some red flags early on surrounding delayed and missed milestones, among other traits. We were referred to early intervention specialists before Flynn’s first birthday, as well as undergoing some evaluations and testing, but it wasn’t until he was almost three years old that he was officially diagnosed with cerebral palsy.
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. (Centers for Disease Control and Prevention)
The most difficult part of raising a child with a disability is not having a child with a disability. We have our challenges and difficult days, just as any other family, but loving through the hard parts is simple, my love is unconditional and has endured so much more than this. It’s societal perceptions and opinions that are difficult to overcome and often seem insurmountable. Flynn was born into a world full of stigmas, of “can’t,” “won’t,” and “never” that need to be shattered before he is considered equal. The word “disability” alone is even considered taboo. Communities are often not accessible or inclusive. There is so much for the disabled population to overcome that isn’t even related to their diagnosis.
There’s this known untruth spread around society that individuals with disabilities are incapable, unworthy, and are lesser than. Following Flynn’s CP diagnosis, this is what weighed on my heart: To those who knew him before, would he be the same now? To those who were to meet him in the future, would he be given an equal chance?
And throughout our first months after receiving this diagnosis, I learned something and it rings true in so many ways: Just because the world is loud, doesn’t make it right. You can tell me all day long about the “facts” that you’ve learned about cerebral palsy, but I guarantee I can show you a different truth. I’ll meet your “incapable, unworthy, and lesser than,” with “able, worthy, and equal.” Just because someone is yelling, doesn’t make what they’re screaming true.
March is National Cerebral Palsy Awareness Month in the United States. March 25th is National Cerebral Palsy Awareness Day. Advocacy is what turns “what is” into “what should be.” This is why I speak up for CP awareness, equality, and funding. Spreading the real stories and sharing the real people that make up “cerebral palsy,” that’s what will change perspectives. And I won’t stop until the world shows this community appreciation, until there is representation in the media, until society becomes more inclusive, until there is federal funding, until we feel that the world has become a better (more accessible) place. I do it all because my child, and others like him, deserve a world where they are considered equal.
Preemie mom Kristina Mulligan is a wife to DJ and mom to Flynn. Their family lives in Hudson Valley, NY. Kristina loves crafting, listening to podcasts, and obsessing over true crime. Kristina is a Preemie Parent Mentor for Graham’s Foundation. Since becoming a mom, Kristina has used her superpowers for good, not evil, and have worked a lot with advocacy and raising awareness for disabilities, prematurity, and inclusion. You can follow Kristina and Flynn’s journey in her blog: One In a Mulligan
Women in society are always feeling judged; by others and by ourselves. Judged because our drive to succeed might be viewed as obstinate, bossy or stubborn. Judged because we feel inadequate trying to be everything to everybody: our bosses, our partners and especially our children. Judged because we feel lonely even if we have many good friends and a supportive family. Personally, I also feel judged since my birth story did not go as planned.
No one really thinks about the Neonatal Intensive Care Unit (NICU) unless there is a family history of time in the NICU; your pregnancy has been difficult for health reasons; or, if you know someone who has had such an experience. I was one of those who had never even thought about the NICU.
Regardless, one of the first things I remember thinking about a few days after I had given birth after a life-threatening emergency c-section, was, what did I do or not do to cause this? See, judgement. Did I exercise too much? Did I eat the wrong things? Were my clothes too fitted so as to constrict my belly? I blamed myself. Of course, my doctors tried to assure me that nothing I had done “caused” Jenna’s premature birth.
Sometimes premature births just happen. Sometimes moms get sick and there is no choice other than to take the baby out early. Through a series of fortunate events during a crazy 96-hour period, and a miraculous doctor, my story, fortunately, is a positive one – but the persistence of judgement follows me.
Despite having a gorgeous daughter who is strong, healthy, resilient and happy, I still cannot shake the feeling that I am being judged. Judged by other mothers, teachers, evaluators, therapists, and others, all of whom I logically know are not doing so. Perhaps what is worse of all, I am continually judging myself.
I walk down the street seeing babies in strollers thinking there is no way my daughter was that small. I’ve already forgotten that my daughter was in fact much smaller than almost all the babies on the street and then I feel bad that I don’t remember. I feel bad that I missed out on so many of those walks since my daughter was already almost three months old when she finally emerged from the hospital.
The one memory I do have from when I was finally able to walk Jenna was when a random woman stopped at the same street light as me and my baby nurse and remarked how beautiful and angelic my sleeping daughter looked. Obviously, I thanked her. She then proceeded to question how old Jenna was. When I replied, “almost 5 months”, she rudely questioned, and this I will never forget, “Are you sure? Are you feeding her?” It took every ounce of courage I had not to break down in tears. Our baby nurse touched my back as if to say, “I’ve got this covered” and she said to the stranger, “ma’am, the baby is as old as she is supposed to be.” With that we walked away and never looked back. Then I broke down in tears, and questioned my already fragile state of being even more than before. My nurse said “you do not owe anyone an explanation but yourself, your husband, your daughter and your family. And, more importantly, never let your child sense that you are worried.”
As I look back on it now, over two years later, while that was a turning point for me in respect to how I dealt with comments from others, I still am not able to let go of the immense guilt. I outwardly grew more accepting my birth story and more confident that I was doing everything I could to help my daughter succeed — inside I continue to let it eat away at me. We are fortunate that we are in a much better place with respect to Jenna’s growth and development, yet I am back in that same place of feeling judged. Jenna is thriving and doing well despite some expected delays (ever try Zoom therapy with a toddler – thank you COVID). I always feel when she isn’t doing something “as well” or isn’t hitting a milestone (both adjusted and non-adjusted), that it is somehow a reflection on me and my shortcomings as a mother.
When some evaluator who is trying to help us continue to receive services tells me “she’s doing well, but you really need to focus on…” and proceeds to list a thousand things Jenna still needs to improve, it makes me feel like a failure. That judgment, those words, and that tone of voice brings me back to all those emotions from when I was strolling Jenna down the street that day. I know how far we have come and how hard my daughter works each and every day. She tackles everything she does with the cutest smile and spunky resiliency. Not a day goes by where I don’t smother her in kisses and tell her how proud of her and how grateful I am for her. Perhaps I can learn from my daughter, and maybe preemie power isn’t just for preemie babies after all.
Jodi Klaristenfeld is a wife and mom to a beautiful 3 year old girl. She runs her family business, and as a result of her daughter’s early birth, she created Flrrish, a community centered around advocacy for preemie children and their parents. It will be launching in the coming months in 2022 and she cannot wait to share it with everyone. Jodi and her family live in NYC.
We hope you had a wonderful birthday bouncing in the clouds. Thank you for letting yesterday be your brother’s day. Today is your day- your day to be remembered, thanked, and loved (although this happens every other day of the year as well).
Oh sweet Ezra… What a strong boy you are! You tried to arrive even earlier than you actually did, but you were able to hang on to give Rowan more time to grow. What a wonderful big brother you are, and still living up to the meaning of your name as a “helper,” which we found out so coincidentally after you died. You continue to look out for Rowan, and for us as well in ways we didn’t expect to find you.
You make yourself known and remind us that you’re still here. We see you when we feed Rowan and he looks into space and smiles. We see you in koala bears like on the warm pajamas you were buried in. The first bath toy Rowan chose to play with was a foam koala bear picture- and I knew it was you joining in on the fun. We see you when the mail comes and brings us your footprints or little gifts from you and your NICU angels, and they come on exactly the perfect days (like yesterday on your birthday, for example). We find you with us when we least expect you, but always when we need you, whether we realize it or not.
It’s been a year since we held you in our arms for the first time, and we crave that feeling every day. Instead we cradle you so gently in our hearts, and while sometimes that cradle rocks our emotions, our love and gratefulness for you will never fall out. Happy 1st birthday, Ezra. Thank you for all you continue to do to help us. We’ll see you Earthside again, soon.
Love,
Mama, Daddy, and Rowan
1 year!
Dear Rowan Shane,
You came into this world after only growing 55% of the time you needed in my belly, and here you are now- defying odds left and right. What a year it’s been, sweet boy. You are amazing us each day with every ounce you grow, every bite of food you take, every smile, every laugh, and every movement. Your loving and curious personality shines clear through your eyes, and we can’t wait to help you explore the world even more. You’ve taught us to not take anything for granted and helped us discover how far our strength and love can take us. In honor of your first 12 months, here are 12 of your highlights/fun facts/achievements so far:
1. You came out ready to prove everyone wrong- breech, crying, spontaneously breathing, and able to receive 30 seconds of delayed cord clamping.
2. You were only 11 inches long at birth. Your lowest recorded weight is 15.9 OUNCES. You were 4 days old.
3. You battled (and beat) pneumonia at less than a month old/24-25 weeks gestation.
4. You surprised everyone and came home only three days after your due date without any oxygen or feeding requirements!
5. You are meeting milestones for your adjusted age (and even some closer to your chronological age)!
6. You love to be silly and play games. You explore all of your toys and books so intently.
7. You get so excited when you see it’s time to FaceTime with family.
8. You are defigoing to be a swimmer- you kick and splash in the bath with so much power.
9. You’ve been discharged from the pulmonologist and the nutritionist!
10. Your heart is strong and healthy. The cardiologist said the only limitation you may have is not being able to go scuba diving (but Daddy says even if that’s the case we’ll find a way)!
11. You are beginning to feed yourself some finger foods.
12. You are wearing 9-12 month clothing, rolling all over the place, have two teeth, weigh 16lbs 10oz, in the 13th percentile for your adjusted age, and 30th percentile for height/weight ratio!
You are our miraculous superhero. Happy birthday, Ro. Here’s to many, many more happy and strong years! We love you more than you will ever know!
Love,
Mama and Daddy
About the Author…
Cori Laemmle lives in Indiana with her husband, surviving twin Rowan, and parrot, Kermit. She teaches preschool special education in her local public school district and is learning to navigate the parent role throughout the early intervention process. Cori is passionate about advocating for preemies- especially 22 weekers and surviving twins- and helping other infant loss parents as they find their way through the “&” life (simultaneously experiencing joy & grief in day to day life).
“I don’t know how you could survive that.” “I can’t even imagine.” “I know that I couldn’t survive something like that.”
Loss parents have all heard these phrases and other similar ones more than once. And if I’m being honest, five years ago, I would have said the same things. But, as someone surviving with a child in heaven, I have learned a lot more about this experience and about myself. People will tell me that I am so strong, that I’m resilient, that I am amazing. The truth though is much simpler: Loss parents survive the loss of their child because we have no other choice.
The death of my daughter Colette in May 2018 was the worst experience of my life. I pray that I never experience a pain like that again and yet, I know that the pain over that experience is a pain I will carry the rest of my life. Sure, there are a lot more days now when the pain is not as severe, but it’s still there always—a dull ache that threatens to surge at any time, sometimes with warning signs and sometimes with a hit so hard it knocks the wind out of you.
From the moment I was pregnant with Colette, I knew she was a girl. Even before we officially knew I was pregnant, I knew we were going to have a daughter. I dreamed of her at nights—vivid dreams of a girl with long, blonde hair, running through fields of daisies, of a girl who snuggled up to me holding a stuffed animal. I could picture her, but ironically, I never could see her face. The image of her running through daisies was always her back in front of me as I ran to try to catch up and the girl snuggling up to me buried her face in me, unknown and unseen to me.
But, I was okay with that, she would be my little girl and having the mystery of what her face would look like was fun and something to look forward to. My husband and I had purposely chosen not to find out the baby’s sex, something we felt was important to us and probably something I could easily endorse since I knew with every inch of my being that we were having a girl. My commitment to the knowledge I felt internally that we were having a girl was so bad that when we started talking about names and my husband broached boys’ names, I said, we don’t need to worry, we’re having a girl. I knew that he was frustrated with me and wanted to have a plan for both possibilities, but I just did not think we had to worry.
Fast forward in the pregnancy to a normal OB appointment and a very high blood pressure reading turning into a trip to labor and delivery which then became a hospitalization until delivery. Then, after a little over three weeks of being in the hospital, the doctors recommended delivery and our sweet girl Colette was born at 24 weeks and 5 days. When they said it’s a girl, I said, see, I knew it. We had been warned repeatedly that Colette would make no sounds, that she was too young to even cry. But, as everything quieted back down while they were closing me back up after the emergency c-section and the neonatologists took over, working on Colette, I heard a small squeak in the room. It was so tiny, but also so strong and I remember saying, “was that her?” I was told that yes, that was her and everyone was so surprised and amazed, but I thought, “yup, I know that’s her, she’s my kickass daughter, who is tiny but strong, and will defy all the odds against her.”
Colette went off to NICU and there were some complications in closing me back up so the first time I saw her was hours later as they wheeled me in my hospital bed in to see her in NICU before they sent me to my room to get some rest post-surgery. Immediately, I noticed how tiny she was, thinking she looked more like a tiny doll than a baby. But, she also had these really long legs and really long arms that I was convinced was the toughness in her. Her eyes were still shut due to her gestational age and she had so many tubes around that it was hard to see, but she had my nose. She was here and I loved her. I would not get to hold her, but I immediately leaned over, despite the terrible pain that I felt in doing so, and placed my hand inside the isolate to touch her. This was my girl, the one who loved dancing in my belly to Cuban music, the one who caused me such morning sickness, the one who was a rebel from the start, getting me sick on my favorite pizza and enjoying steak as much as her father (much to her mom’s dismay), the one who I talked to privately whenever I could.
Finally, the nurses agreed I should be sent to my room. They took me upstairs and I fairly quickly went to sleep. When I woke up the next morning, I was still on an IV of magnesium and could not go to NICU to visit her. I was impatient all day, trying to relax and rest, but really just ready to see Colette. The nurses knew that I wanted to go so badly that they asked the doctors to remove my IV early and they did. They tried to pull over a wheelchair for me, but I said, no, it’s okay, I’ve got this and swung my legs out and stood as quickly as possible. When we came into the NICU, I found a different place than I had been in the night before. While they knew it was a quick visit last night, today they required us to follow all the procedures we had previously skipped. Mark showed me how to wash my hands, to clean my phone, all steps I really wanted to skip just to see her.
Then we went in and sat with her. Colette was amazing to watch. Those long arms and legs of hers were in constant movement. She quickly realized that she had the tubes and wires and wanted them off. She would take one of her arms and put it up to her face and try to pull out the tubes. She did not just do it once, she would try several ways, and then she would put the arm down. She would wait a few minutes and then pick up the other arm and try again. She was just a joy, a ray of light and love.
Nine days of the ups and downs of NICU, of her showing tremendous progress and then huge setbacks and then back again and again, and it was clear that her lungs were just too underdeveloped and could not hold that spirit inside. So, we finally got to hold Colette as she was dying, surrounded by our families, with everyone getting a chance to hold her. My husband and I are both activists and I remember saying to her, “Okay, we’re going to keep fighting here and trying to create change, but we need your help and so you do all that you can in heaven.”
I miss Colette every single day. Somedays, the pain and grief is so great that it’s hard, if not impossible, to even get out of bed. And other times, it just lingers on the periphery, a constant reminder of her way too short life, but not actively hurting me.
Until we meet again, I will continue sharing her story, allowing her to be my inspiration, doing the necessary work here and grateful to have an ally in heaven.
About the Author:
Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise who she lost at nine days old, and her only living child, her rainbow baby, Elliott Miguel. Inspired by her journey with Colette, Michelle and her husband founded The Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants and they are grateful if you are able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.
I had my twin sons via emergency c-section on 10/29/2019, just a day before my own birthday. They had twin to twin transfusion syndrome, with my son Wyatt having polyhydramnios (too much fluid) and my son Brayden having oligohydramnios (not enough fluid). Wyatt’s polyhydramnios was so severe that I had to have 2 separate amniocentesis just to be able to breathe. After my second amnio, I developed a fever and an infection in the fluid surrounding my sons. So off to the emergency room we went, and my sons were taken out of me only a couple hours later. They were delivered at 28 weeks and 1 day.
Everything was truly a blur, it didn’t feel real at all. I just went through the motions. I knew things were serious, even dangerous, but it didn’t hit me how bad things were until I was brought into the NICU later that day and I only got to see my sons through their isolettes. I couldn’t hold them, couldn’t touch them, I could only watch and press my hand against the isolette as some form of contact. That was a very tough pill to swallow but I knew it was ultimately for the best.
I got to hold Brayden the next day on my birthday, for the first time. Wyatt wasn’t as stable so I only got to hold Brayden. He wrapped his tiny hand around my finger and nestled into my chest and I was in love. I would have stayed like that forever if it was possible. Over the next few days, things seemed okay. I was still healing but the boys were stable and I couldn’t complain. This is where things take a turn for the worse…
After a few days, Brayden started getting sicker and we couldn’t figure out what was wrong. The neonatologists ran several tests including ultrasounds to see if they could figure out what was causing his issues. They kept pulling blood from his stomach and he wasn’t tolerating his feeds. I’m a general and cardiac ultrasound tech so I knew what the scans were looking like before we even got a report back. His heart was in failure, his kidneys were in failure and he had fluid on his brain. It was both a blessing and a curse to see what was happening inside Brayden’s body. I could mentally prepare myself for the report, but I also could see just how dire his situation was.
The doctors tried everything to stabilize him but to no avail. I watched in agony as my sons life slowly slipped away over the course of 14 days. He passed away on 11/12/2019 in his daddy’s arms and it was the worst day of my life.
Did you know it’s possible to die from a broken heart? It’s a very real condition called Takotsubo syndrome, or “broken heart syndrome.” It can sometimes happen in response to extreme stress, such as losing a child. I was convinced I had it, the pain of losing one of my sons was so severe. It wasn’t until I scanned myself to look, surprised to see my heart beating normally, that I felt the strength to continue. I was able to slowly pull myself from the dark depths of my mind and keep going back to the very NICU that Brayden passed in, to care for Wyatt.
I was reminded of Brayden’s death every single second we were in the NICU to visit Wyatt. Every milestone Wyatt achieved was a knife in my heart knowing Brayden would never achieve those same milestones. I’m still affected by this, seeing Wyatt running after his older sister Emma playing and laughing knowing I’m supposed to have two sons here with us.
Wyatt was discharged on 01/12/2020 after 76 long days in the NICU. Bringing him home brought me some peace, that he was on the right track and everything could be ok. We introduced him to his big sister Emma and they’ve been inseparable ever since.
I know Brayden watches over us. On the day of his funeral it hadn’t rained a drop but my boyfriend and I swear we saw a rainbow in the sky as we drove to the funeral home. Ever since then, rainbows remind us of Brayden and we take them as a sign that he’s near.
Nothing is easy about losing a child, and I wish with everything I have in me that I could feel his little body against my chest one last time, or hear his little cry. I will never be the same. As always with grief, some days are easier than others but it is never easy. Everything I do now is for Emma, Brayden and Wyatt. They are the reason I exist, breathe, and attempt to enjoy life again.
Becoming an ambassador for Graham’s Foundation means I get to help Brayden’s life and soul live on. I get to make his and Wyatt’s story known, and in the process help other families with infant loss to know they are not alone.
It has taken me a long time to be able to speak about what happened with our NICU journey. It’s still a struggle for me if I’m honest, but it’s therapeutic to write it down and get it out. My hope is for whomever reads this, if you’re struggling with a similar situation to me or even just a crazy NICU journey, to know that you are not alone. The bad days come but so do the good days, and you’ll get to the good days.
About the author:
Amanda works as a full time echo ultrasound technologist in the Philadelphia area. When she’s not working, she’s at home with her boyfriend Steve and two children Emma and Wyatt. Emma is the big sister, teaching Wyatt to chase her and play, getting him to babble more words. Wyatt is the adoring little brother, teaching Emma patience and sharing. Amanda shared with us that “Becoming a Graham’s Foundation Ambassador is so important to me. I’ve wanted to do something for Brayden and his memory for so long but never knew where to look or start. This gives me the chance to work with NICUs and bring comfort and awareness to fellow NICU families and families that know infant loss”.
If you have interest in becoming an Ambassador with Grahams Foundation please email us at ambassador@grahamsfoundation.org
Being a first time parent, I thought that my pregnancy would be just like in the movies. I would be pregnant for 9 months and then take my beautiful baby home. That did not happen for me.
I was carrying my son very low and at the end of my second trimester, I started bleeding. I had many tests done, but to this day, they don’t know why I kept bleeding. I was 3cm dilated at 24 weeks, therefore I was admitted to the hospital. There I was given magnesium and two steroid shots. I was also given some pills to stop the bleeding. After a week, I was discharged only to come back to the hospital again at 26 weeks due to more bleeding. I was again given magnesium and a second dose of the steroid shots. I was discharged when the bleeding stopped, but a week later it happened again. The doctors told me not to worry unless the bleeding was heavy, so I stayed home.
The day before I went into labor, I was in bed having contractions. Me, being a first time mom, I did not know whether they were Braxton Hicks or the real deal. My water broke at 7 months pregnant, labor lasted 30 minutes and out came my 3 lbs baby boy Kairo. He cried as soon as he came out which warmed my heart. He was premature so I didn’t get to hold him, just a kiss from me and they rushed him to the NICU. Seeing him in the NICU, on oxygen and so many wires attached to him, I was scared. Scared to touch him or to even change his diaper. He was so small. The amazing nurses reassured us that preemies are stronger than we think and that they would not break.
My fiancé and I slept in the NICU for a week, the longest week of my life. I barely slept with the sound of the machines beeping and the nurses coming in to check on him every 2 hours. In four days, he no longer needed cpap and was breathing on his own. From then on, we got to hold him, watch him gain weight, no longer need a feeding tube and finally drink from a bottle.
We finally got the good news that he’s ready to come home, however his heart rate kept dropping. Although the NICU journey is long and tiring, it has made me become more patient. Just watching my baby achieving these milestones, I couldn’t be more proud of him.
My advice to any preemie parent is to hold on tight, keep hope alive and to focus on the milestones that your baby is achieving. It might not seem like much sometimes but they are doing their best.
I had my preemie on July 31, 2019. While I’m still fairly new to this whole experience, I feel like I’ve learned a lot so far. We aren’t new parents, but we’re new to the NICU. We have a 2 year old son who was born full term with no issues. However, our second child was born at 33 weeks.
On July 29, 2019 I went into the hospital because I was feeling lots of pressure. It almost felt like she could be coming soon. I fully expected to be discharged and put on bed rest for the rest of my pregnancy. What I didn’t know was that I was in preterm labor and having contractions every 2-5 minutes. They admitted me into the hospital for observation that night and were going to discharge me in the morning. Well at about 2 AM, the nurse came into my room and woke me up and asked if I was in any kind of pain. I told her no and asked why. She said my heart rate was about 150-160 while my baby’s heart rate went down to the 90s. I was scared. I calmed myself down and both of our heart rates went back to normal. They decided to keep me another night. My husband was offshore during all of this, so I was even more scared. He came home at 9 PM on July 30 so he came straight to the hospital to stay with me. Everything with myself and my baby had stayed good that whole day. The doctor just wanted me to stay one more night to make sure that didn’t happen again.
At about 5 AM on July 31, about five nurses came running into my room to wake me up. I had no idea what was going on at all. I could hear them yelling to prep the OR for an emergency section and that they needed help in my room. I was totally panicking. They started me on oxygen and had me flipping from side to side. They couldn’t find my baby’s heartbeat. My husband and I are completely panicking. After what seemed like a lifetime, the nurse finally said the most beautiful words I’ve ever heard. “We got her heartbeat back.” I was so relieved, but I was also scared because this was the second night in a row that this had happened. At this point, I was questioning whether this had been happening at home and I just didn’t know.
The nurses immediately informed my doctor about this and she sent an ultrasound tech in. After it was done, it was sent off to a high-risk doctor. He consulted with my doctor about what the best thing for me and the baby was: an emergency c section. I was terrified. I delivered my first child naturally, so I had no idea what a c section was like.
I was crying and I was so scared because I knew it was what was best, but I was also terrified that my baby was going to be here 6 weeks earlier that she was supposed to. At 5:37 PM, I delivered our beautiful daughter, Addison Kate. She was 4 pounds 14 ounces. She’s the most beautiful thing I have ever laid eyes on.
The second night of her life was rough for her. She experienced pneumothorax. This is when air collects in the space between the lungs and the chest. Because of this, she had to have a chest tube placed in her side. She also had a feeding tube. We couldn’t hold her for the first nine days of her life. We would go see her every day and just sit there and talk to her.
The pneumothorax persisted for 8 days. She was also having trouble breathing so she had to be on an oxyhood. This is more efficient than an oxygen cannula. As soon as she got better at breathing, they took her off the oxyhood and put in the oxygen cannula. After all that was gone, she was having trouble sucking her bottle. She was tube fed for the first 10 days of her life, so she didn’t understand the concept. She had episodes of bradycardia, which is drops in her heart rate, but she steadily started getting stronger every day.
After spending 32 days in the NICU, she finally came home. Our family finally felt complete with her home. Her big brother Carson absolutely loves her. He wants to help out so much. It’s so sweet. She adjusted well to coming home. One of the only things that we noticed about her was that she couldn’t sleep in complete silence. I think she was so used to hearing everything that was going on in the NICU that she just couldn’t sleep without background noise. Our son adjusted well to here coming home as well. He would help out with anything that she needed. He still loves to help her do things that she can’t do yet.
When the pandemic hit in March of 2020, we were terrified. Hearing about how COVID was affecting the respiratory system was a nightmare for us because Addison had issues with her lungs. We stayed home for 3 months. We didn’t go anywhere or do anything with her until July of 2020. I had to go back to work, so she went back to daycare, but we didn’t go anywhere else with her. It was still scary because I didn’t want her to be sick. I knew it would be worse for her than it would be for us. So far, we have steered clear of having COVID in our household. I cleaned and sanitized everything that was brought into our house. We Face Timed and called our family and friends because it was just too risky being around them.
In May of 2021, she was diagnosed with RSV, parainfluenza and rhinovirus on top of an ear infection. This was the sickest she had been since she came home. She was admitted into the hospital where we spent two days doing breathing treatments, IV fluids, sand IV medicine. She got dehydrated so it made everything much worse. She is back home and doing well now! We will forever be grateful to our NICU and hospital that continues to provide amazing care for Addison!
I’ve learned a lot in our journey. The hardest part was having to leave her at the hospital and go home without her. The best thing to help me through this was knowing that the NICU was the best place for her to be. The doctors and nurses were so amazing. They called every day with an update for us. They also let us know what is going on every time we would go see her. The bradycardia episodes have taught me to be patient. The only thing that will help with these is time.
Addison today! Photography Credit: August & Grace Photography in Louisiana
When thinking about my NICU journeys, I need to start with the birth my second son. My c-section was scheduled at 37 weeks and when Cyler was born he was blue. They had to rush him to the NICU. He was diagnosed as a lazy breather and had sugar issues. Cyler was placed in the “air bubble” and then on a c-pap. But within 6 days, he was ready to come home. Due to this experience, I was terrified to have another child.
My third pregnancy went well until 28 weeks when I started having contractions that the physicians could not get to stop. I was placed on bed rest and at 32 weeks Caden, my third son, was born weighing in at 4lbs 9oz. When I came out of surgery, they took me to see him. He was doing well they had him in an incubator. At day three, he was doing amazing. He was maintaining his body temp, on NO oxygen and even gaining weight.
On night seven, the nurse looked at me and said I’m worried about him and placed him back in the incubator. I was devastated. While at the hospital the next day, I was holding my son and suddenly all the nurses came running up to us. Alarms were going off and my son looked like he was twitching. His eyes rolled up and he became stiff. With tears streaming down my cheeks, I looked up at the nurse and said, “What do I do – he’s having a seizure?” She looked up and I will never forget her words she said, “Just hold your baby mama”. After the seizure ended, we put him down and all the doctors started checking him over.
He ended up having 11 seizures in one hour and I have NEVER been so terrified. They started running a battery of tests and start IV lines. Seeing all the bruises on his delicate skin because the IVs would blow was so very difficult. One of the charge nurses came up to me and pointed to a vein in his head and said that one looks good, I honestly thought she was kidding. The doctors finally convinced me to go home with one caveat; that someone would be at the hospital around the clock with him. It was my mother’s turn so I could shower and TRY to get a couple hours of sleep.
I received a call from her, and she said I don’t want you to freak out, but they just put an IV in his head. I lost it! I did not even know this was really a place an IV was placed. I went back up the hospital immediately telling the nurse this is not ok. She looked over at me and explained how it was so much better for the baby, but for me all I could see is that they stuck a needle in my son’s head. (I had to keep telling myself that it was not in his brain) When I would sit down to hold Caden, they had to essentially tape us to the chair. The nurses used so much tape on him and me it was CRAZY. Caden’s body temperature kept dropping as well and I looked over to the nurse and said he is cold he needs a hat to help keep the heat in. She looked over at me and said, “I would give anything for a hat that works with his IV.” I looked at my mom and said, “we are making a hat.” She kind of brushed me off and said “Yeah ok” but, I was driven.
We started designing and designing and designing the perfect hat. It took us 8 months to design a hat with all the seams on the outside so it would be softer for the baby. We created the cap of 100% cotton interlock because it was the softest cotton. Plus, we made the hat so it could be sewn with two panels taken out if we began to see the need for additional medical procedures. We wanted to make the hat with a cute fabric so that we could lessen in the impact of the IV. We will never be able to take away the fear of a scalp IV or its disturbing appearance, but we can distract from the IV. Caden is now a healthy 3-year-old but still has seizures and has diagnosed with epilepsy. You would never know that Caden has a disability. He is doing everything a normal 3-year-old would do and is happy and wonderfully crazy.
Cailin is a photographer, mother and wife to a career Army reservist. Cailin has three boys ages 8, 5, and 3. She has experienced three premature births and two NICU experiences the last one being the most critical. During the last NICU stay Cailin’s youngest son had to have a scalp IV from which her passion to make change began. Cailin and her Mother began Matronee’ as a response to a need. They designed, patented, and manufactured a hat that can be used in conjunction with the scalp IV. For more information visit them at www.matronee.com and view the video which explains their journey. You may purchase caps or purchase caps for donation on the website. If you have any questions, contact them at info@matronee.com.
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