Blog

How do you survive….

October 21, 2021 by

By: Michelle Valiukenas

“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.

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices
Tags: , ,

Our rainbow in the sky

August 25, 2021 by

By: Amanda Seiple

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

Categories: Bringing Preemie Home, Life After NICU, Mothers of Preemies, Preemie Loss & Remembrance, Preemie Multiples, Preemie Parent Voices, Supporting Preemie Parents
Tags: , , , ,

My pregnancy was not like in the movies…

August 11, 2021 by

By: Jo-Ann Elie

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.



Categories: Bringing Preemie Home, Life in the NICU, Preemie Parent Voices, Preemie Voices, Supporting Preemie Parents
Tags: ,

Addison’s Journey Home

July 15, 2021 by

by Krystin Moneaux

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

Categories: COVID, RSV & Preemies, Mothers of Preemies, Preemie Parent Voices
Tags: , , ,

My NICU Journey

July 1, 2021 by

By Cailin Werner

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.

Categories: Life in the NICU, Mothers of Preemies, Preemie Issues, Preemie Parent Voices
Tags: , , , , ,

Keeping the Faith

June 23, 2021 by

By Jodi Klaristenfeld

I do not remember much about January 16th 2019.  I do know that it is the day my life changed forever.  January 16this the day I became a mom – three months earlier than expected. 

Becoming a mom had been the “missing piece” of my life. I had always known I wanted to become a mom.  Even as I aged into my forties, I did not give up hope; I had faith that one day I would become just that.  Discovering I was pregnant after several failed IVF attempts and beginning the path to surrogacy or adoption was a complete surprise and my dream come true.

I did not gain much weight during my pregnancy and did not really suffer from nausea or other maladies which befall many mothers to be.  I felt I was blessed with the perfect pregnancy – I was wrong. 

At around my six-month mark I experienced a “miraculous” twenty-pound weight gain (in five days).  My vision started blurring and I began to see spots.  My urine turned orange.  I did not really worry until I became too dizzy to walk.  My husband was in Europe for business and I was lucky my mom had come to visit me to prepare for the arrival of my child – in three months.  She sensed something was very wrong and dragged me to my OB.  

My doctor took my blood pressure, 190/140, asked about my symptoms, and said, matter of factly, “ok, let’s go get your baby out.” The rest was a blur.  Ten minutes later I was in the hospital, and two hours after my daughter was born. I did not find out until a couple of days later that I had been suffering from a HELLP syndrome, a very rare and often deadly form of preeclampsia.  Had the doctor not delivered my baby immediately, neither she nor I would have made it through the night.  In fact, I later found out that my amazing angel of a doctor had to ask my mother who to choose to live, my daughter or me and if he needed to give me a hysterectomy on the off chance my blood wouldn’t clot due to my platelet levels, could he do so?

Jenna in the NICU

I was so ill I was not allowed to meet Jenna until two days after her delivery. I was sick, scared, confused and anxious to say the least. What would I find? What was she like? Would I be strong enough to hold her? Will she like me? Millions of questions and concerns came into my head, but nothing could prepare me for those first moments walking into the NICU. I saw her in the isolette looking so beautiful and tiny (a mere 2 pounds 2 ounces), with her name in pink, purple and turquoise. She had tubes and pic lines in places where babies should not have tubes.  She was all bundled yet so exposed for everyone in the NICU to see. There were bells, whistles, machines, lots of nurses and doctors, and other parents. 

I got up close to look, I smiled and then burst into tears. Tears of joy and happiness and, yes, fear and trepidation. My husband and one of the nurses placed her on my chest and I enveloped her in my arms. Unfortunately, I cannot remember anything else. I so very much wish I could remember more from first meeting her and I’ll forever be searching for it in my mind, my thoughts and my feelings.

The very next morning, I had these awful thoughts. Why didn’t I feel bonded to my baby? Where was that “motherly instinct” that everyone said would happen from the moment I met her? Was something wrong with me?  Was this a symptom postpartum depression? The answer, while quite simple, is very common; No, I was not having postpartum depression, and yes, the fact that I was asking about the special bond between a mother and child was exemplary of how I did have that instinct.  What I didn’t realize, nor what I did not for a second consider, was that I had gone through a terrifying experience in and of itself, aside from perhaps the most joyous event in life by welcoming a baby into the world. As mother’s we don’t give ourselves enough credit.  We are so hard on ourselves and too easily blaming ourselves for shortcomings or failures rather than cutting ourselves some slack.

Only days later while both my daughter and I were both in the hospital, did I begin to understand what had happened.  I am still not fully aware of all the details as I write, and that is quite fine for me. For what I have learned is not only traumatic, but also miraculous.  Miraculous for a whole host of reasons, but perhaps most importantly because years later, thankfully and gratefully, we are all okay.  My daughter is a beautiful, smiley, spunky and smart toddler, and because of her and the way she came into this world, I have found a new purpose in life.

Jenna now!

Jodi Klaristenfeld is wife and mom to a beautiful 2 year old girl.  She runs her family business and as a result of her daughter’s birth, she is pursuing a new career centered around advocacy for preemie children and their parents.  Jodi and her family live in NYC.

Categories: Mothers of Preemies, Preemie Parent Voices, Pregnancy
Tags: , , ,

A Tale of Guilt & Intervention

June 18, 2021 by

By Kristina Mulligan

There are so many times that I know that I am trying my absolute best, but the truth is that I don’t feel like I’m a good mother. 

This has nothing to do with a lack of love in my heart. I love my son more than words can describe. I would do anything for him, regardless of my own well-being. I cherish every snuggle, sloppy kiss, and sweet giggle and I breathe through the tantrums and tough moments knowing that they’ll pass. I understand him, even though he can’t speak clearly, and I think he knows that mama is his home. While I know all of these things to be true, my doubts of my capabilities as a mom don’t fade.

For the past two years, Flynn has been receiving early intervention services. We started him out with just physical therapy to address his muscle weakness, and have built on to that with occupational, special instruction, speech, and feeding therapies, too. He has made a ton of progress which has made me very proud; especially considering just a few months ago, he wasn’t able to eat solid food. I know that this is what he needs, so I have no regrets, but as a mom, I feel lesser than.

It’s hard to let go of a part of motherhood and when it comes to any type of intervention, that’s part of the territory. As a parent, you look forward to those milestone moments like sitting up for the first time, crawling, and walking. When it comes to your child receiving services, such as physical therapy, you sometimes must take a backseat. I am lucky that I get to attend every single doctor’s appointment and therapy session with my child and I know that so many people are not as fortunate. When Flynn sat up for the first time, I was there, but I was not the one helping him. I was beaming with pride in that moment, but after the celebration, I felt like less of a parent. I didn’t feel like a good mom. On the logical hand, I knew that this was exactly what was necessary and that this was his best shot. On the other emotional hand, I felt like a terrible mom for not providing him with the care he needed myself. What must everyone else think of me for not doing all of this myself? Then came the waves of guilt for not being able to carry him full-term and causing all these obstacles for him to overcome. This is all your fault. It is the same now as it was in our NICU days: constantly on my mind with some days being overwhelmingly difficult.

The worst days are those when more “bad news” arrives. I quote bad news because, in hindsight, when it’s something that requires more work or different tactics, it’s just a temporary situation – even if temporary means years. Particular setbacks that we’ve faced have included orthotics, an increase in therapy frequencies, and decreases in muscle tone. I say “Yes” and “What more can we do?” to the suggestions and feedback, but on the inside, I blame myself. I didn’t try hard enough to work with him at home. I’m doing it all wrong and causing him more difficulty. I’m a bad mom.

Sometimes the logical part of my brain kicks in and screams: What can I do though, that I’m not doing already? I’ve changed my work schedule to accommodate appointments. I attend every session, meeting, and doctor’s visit. We do home therapy sessions, to the best of my ability. I focus all the attention that I have on exactly what I feel is needed. I’m trying my best. My best often doesn’t feel like enough, but accepting the help that is needed shouldn’t make me feel less defeated.

On the harder days when I feel lesser than, I try to remember that therapists and aides exist for this reason. They are here to help, not to showcase your “inabilities as a parent.” Some children just need that extra, specialized attention. It does not mean that I have failed. Recognizing issues and getting the necessary help is part of my parental duties. Knowing what is best for my son, regardless of my feelings and struggles, makes me a good mom. After all, all we can do is give our children the best environment in which to thrive, while providing love and encouragement.


We’re all doing just fine. To be doubting yourself means that you care enough to be better, and that makes you great. I may not be the best mom, but I’m a mom who is trying her absolute best and hopes that her child will grow to know that, too.

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

Categories: Early Intervention, Life After NICU, Mothers of Preemies, Parenting Preemies, Preemie Issues, Preemie Parent Voices
Tags: , , , , ,

What I Never Expected

June 9, 2021 by

by Amanda Clappes

On August 21, 2020 I went in to my OB for a normal 34 week prenatal visit. She was listening to my son’s heartbeat and started acting weird. She had the nurse come in and listen to see if she heard the same thing, whatever that was. All of a sudden she’s telling me that I’m going to go over to labor and delivery to have a fetal monitor go on because she was having trouble hearing my son’s heartbeat. Within 20 minutes they were telling me to get ready to have my son!

No one could tell me what was wrong, just that there was something weird with my son’s heartbeat and they hoped that introducing him into the world would help it correct itself. My husband was working (he’s an over the road truck driver) and was still over 3 hours away. Still, I called him and let him know what was going on. During the emergency c-section one of the nurses was amazing and took pictures of my son for me. After he was born, my pediatrician was in the operating room to check him over. He still had issues with his heartbeat, so they took him to the nursery to prep him to be transported to the NICU.

My delivery hospital was not equipped with a NICU, so he was going to be transported an hour away. I got to see my son when they held him up over the curtain, as they wheeled his nursery bed out of the delivery room, and in his NICU box to be transported to the NICU. That was Friday. My doctor released me early (Sunday) so I could go up to Paducah, KY to see my son. The first time I got to hold my baby, he was almost 3 days old. I was an emotional wreck, and when I wasn’t in the NICU with him (as I had 3 other children at home), I was online researching everything I could about preemie support and what I could do and what help was available for me driving to the NICU every day. There wasn’t a lot online.

I found Graham’s Foundation, and it was amazing the information available. I loved that they offered a care package for both in the NICU and out of it. I ordered one, and loved the car seat tag, the nursery card, and the information packets in it. I found out after my son was in NICU for a week that he had a blocked PAC and it usually resolved itself within 6 months. We had to go through multiple EKG vests that monitored his heart beat for 24 hours to verify it was getting better before we could be released. When the cardiologist was ready for him to be released, the NICU doctor had him stay because he wasn’t eating as much as he should have been. It was like I had all my hopes ripped away! Thankfully he started to eat more and we were home together by the time my son was 3 weeks old. I can’t imagine having my son any longer at the NICU, but I know people who have had their babies there for longer. 

I wanted to give back to the NICU for all the care my son received and find a way to support other parents experiencing all that emotional pain and fear. I started working for Usborne Books & More, and realized that it was the perfect outlet for my need to support other parents. There is so much out there that supports the need to read to your babies (even in the NICU), so I decided to put together care packages that helped moms and dads feel supported and give them ways to bond with their baby even if they couldn’t hold them, or if they lived far away and couldn’t be there every day. I decided that a care package should include a book (bonding through reading), a sleeper, a blanket, a stuffed animal, a Graham’s Foundation care package, and any information I could share about local and national resources for preemie parents.

I also hope to include gas cards to help parents with the costs of driving to the NICU, but I’m running into some trouble getting ahold of the right people to have companies donate, and community donations are sparse. Hopefully I can complete my first donation May 1, 2021 and when people see the donations that have already been put together, it will inspire more people to donate items or money to the cause.

Categories: COVID, RSV & Preemies, Mothers of Preemies, Preemie Parent Voices
Tags: , ,

Unexpected Changes

June 2, 2021 by

by Nicole Ventura

Last November (2019) I found out I was pregnant with baby #3.

I had my 2 daughters in California with an amazing OBGYN that I had been seeing for over 6 years. I moved back to New York shortly after my second was born to be closer to family. 

Shortly after being back in New York, I found out I was expecting again with baby number 3. I had to find another OBGYN asap. After carefully searching and reading tons of reviews I found one. My first visit was on a Friday, I told the doctor all my history and this and that and we then processed to do a sonogram. The Doctor had told me that I was not Pregnant. I began to tell him it’s too early and that I had this problem with my second child, where they didn’t see baby till after 8 weeks. He said that it’s unlikely and will check again Monday. I went back that Monday and again, he says no baby, but it looks like I have lots of tissue. He then proceeded to tell me that it was a “molar pregnancy”. “Ugh what”? “What’s a molar pregnancy”?  He said I needed to do some blood work and that I need a D&C where they will do a biopsy. 

I had the D&C on December 18, 2019 and shortly after that, I fell into a depression. Now filled with thoughts of another loss, now I’m scared that I have cancer too. A week or so later my test came back that it wasn’t a molar pregnancy, just tissue. “Just tissue”? 

At this point I’m confused, but relieved.  One night a couple of weeks later, as I get up to go to the bathroom, I stared hemorrhaging. I called the doctors and scheduled an appointment for the following day.

I see the doctor and he doesn’t even check me out, he proceeds to tell me that it’s my period, but that he wants me to have a CT (cat scan) to be sure I had no tissue left behind.  The next day or two, I had the same issue 2x more, before I decided to the hospital for a second opinion. 

This is where I found out I was in fact, 13 weeks pregnant! I cried. I knew deep in my heart, but I ignored it. I wasn’t on prenatal vitamins or eating healthy. I felt as if I failed my baby and my body.

A day later, I found another OBGYN, and started to take care of myself as a pregnant woman should. But just as this crazy journey was beginning and all had seemed okay apart from the bleeding, I had a soft ball sized clot, which irritated my cervix, putting me into preterm labor at 24 weeks. I spent the whole month of April alone, in pain with contractions everyday, every 5  to 10 minutes apart. My two girls were home.  I was missing them, and they were missing their mom. They didn’t understand why I was not home. I was a mess, I couldn’t take it anymore, and nor could my body. At 26 weeks I went into full blown labor, I was rushed into the OR begging to call my husband to come, but they said there wasn’t enough time.   I was scheduled for a repeat c-section but ended up having a VBAC. I gave birth to my handsome son on May 4th, all alone. 

After everything we dealt within the NICU, which included my son, at 12 days old developing Necrotizing Enterocolitis which is an infection in the GI track. He was put on three types of antibiotics which were changed twice. He had to have emergency surgery due to the large intestine rupturing, which cause E-coli. He had 5 cm of large intestine removed and his appendix because it died. The next day he had another surgery for a Broviac line, which is a direct blood line for the 20 plus blood transfusions he received in order to survive. His lungs collapsed two times after his surgery, and was put on a better ventilator.  

My son came home August 18th 2020. He was taking liver medicines for his cholestasis which he developed from the long use of TPN. He was around 8 lbs when he came home, he was very yellow, but doing well. We had some hiccups with possible bowel obstructions, which came back fine. Then the entire family all contracted Covid this past January.  Thankfully we all did fine. Last month, his blood work came back that he doesn’t need his liver medicines anymore! And we are finally able to feed him baby food 3x day now. We still deal with GI symptoms of gas and such, but it’s gotten better. He is hitting all his milestones, and at 11months, 8weeks adjusted, he’s starting to walk. He currently weighs 20 lbs. Overall, we are doing well. We did have a scare about him coming back with cystic fibrosis but the test came back normal and that he’s a carrier like me. 

Nicole Ventura is mom to 3 great kids (2 girls, 8 and 2 and son who is 11 months) and a therapist. Because of her training, she recognizes the signs in PTSD in herself from her traumatic pregnancy, delivery and NICU stay. Nicole, her husband and family reside in New York.

Categories: Advocating for Preemies, Mothers of Preemies, Parenting Preemies, Preemie Issues, Preemie Parent Voices
Tags: , , ,

Expectations

May 26, 2021 by

by Maurie Hornsby

Expectations…we all have expectations. Many of us never expected to be saying, “I celebrate Parents of Preemie’s Day.” But here we are, and I certainly could not be more proud! So Happy day to us, and to our little fighters! 

My journey to becoming a preemie parent was much like everyone else’s….unexpected. But if I’ve learned anything over the last two years is that no matter how you become a parent the journey has its unexpected moments, some fun and some scary. Here is a little bit about how we came to celebrate such a wonderful day! 

I had gone in for my 24-week check-up, this was my first pregnancy and at the age of 25, I didn’t foresee that there would be any issues. At that appointment, I had gained a little more weight than I should have, had some protein in my urine and looked a little extra puffy, my blood pressure wasn’t too bad. But I can guess, many of you know what those add up to. Well we didn’t, I had honestly never heard of preeclampsia, and the doctor didn’t mention it yet. She said to go home, we will run some tests and see you in a week…

Well, we head home, do all the blood work and 24-hour collection and anxiously wait for our next appointment. Once we arrive for our appointment, they check vitals and at this point my blood pressure was 180/100…so not good, before I could even sit down on the table the doctor comes in with admission papers, things were not right and moving fast. I officially had been diagnosed with preeclampsia at 25 weeks. 

By the time we got to the hospital, they had a room waiting for us. It was time to start the magnesium and hypertensive protocol, at this point my blood pressure was 210/120…I was feeling great and scared to death. Our baby was hanging on and doing alright! This was a Thursday and I made it to Monday, until it was time to have an emergency c-section before I started to seize, as my brain was beginning to swell. So at 4 pm that day Caroline Jo was born, weighing 1 pound 6 ounces at 25 weeks and 4 days and so began the fight of her life. 

Caroline spent the next 106 days in the NICU fighting for her life, but that girl came out fighting and hasn’t stopped since…she will be 2 next week and is as sassy as they come. I get told on a regular basis to “stop it” and I wouldn’t have it any other way. 

Being a preemie parent is something many people may never experience and probably are terrified of the idea but I have learned more patience, resilience, and love from that little girl than I can even begin to understand. She gave us a jumpstart into parenting that we weren’t ready for but are you ever truly ready? Do I wish she had stayed inside for a little while longer, yes, of course, but I wouldn’t change who she is today at all. 

Today is a day to celebrate who we have become because of our preemies, earthbound and heaven-bound. They have shaped us for the better and we live on in and for them! 

Maurie Hornsby is mom to Caroline Jo, born at 25 weeks and 4 days due to severe preeclampsia and HELLP. Caroline just turned two and is as sassy as they come! Maurie and her family are from Ohio and love spending time playing outside and with their cousins and family who live nearby. One of their favorite things to do is visit Fiona, the preemie Hippo, that Cincinnati Children’s helped save!

Categories: Preemie Parent Voices
Tags: , , ,

Write for Us!

Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.

Next »