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Leaving My Heart Behind (part 4 of 6)

September 28, 2022 by

by Megan Ueckert

After delivering my twins unexpectantly at only being pregnant for 23 weeks 4 days, the day came that I had to go home from the hospital, without my babies.  It was so hard to walk out of that hospital.  I felt that I was leaving part of my heart there. 

I went home and cried most the night.  The next morning was the start of a very long and unknown journey.  My husband Joe and I went to the hospital to see our son and daughter and as we were walking in the front doors, there was a couple with their healthy and plump baby walking out of the hospital.  I lost it and started crying uncontrollably.  Joe understood my sorrow and just held me.  

The first month was the most challenging and had more ups and downs than I could count.  I was so limited in what I could do with my babies, I didn’t even feel like a mom.  Every day I thought about the risks my IVF doctor had warned us about and wondered if I had been selfish in putting 2 embryos in and if I’m the cause for these two innocent babies to be struggling.

I constantly questioned how God could allow such innocent babies to suffer.   But as I thought these things, there would be a day that would show me that my prayers were being answered and these babies were fighters and wanted me to be their mom. 

At first it was hard to accept that the doctors and nurses were doing all the right things.  I would question every decision and every test and try to understand what it all meant.  I would spend hours reading up on all the processes to make sure I was advocating for my babies.  There were times where it was difficult to watch as they navigated with ease through the wires to change diapers or provide the daily care my babies needed.  I watched in awe and fear. I wanted so badly to help but was terrified of causing them unintended harm.  

Every time I would touch or talk to my son and daughter, I would watch the monitors and listen to the alarms and feel heartbroken when it was clear they had had enough stimulation for the day.  Each day as we walked into the NICU, as I scrubbed my arms practically raw up to my elbows before walking back to see my babies, I was filled with excitement to see them but fear of what news the doctors may have for us that day.  

It was truly an up and down rollercoaster trying to understand everything that was happening, trying to understand what all the dings and chimes and lines on the monitors meant, trying to decipher if the news we were receiving was sugar coated or really good news.  

The nights at our house without our babies were difficult.  Every night before attempting to go to bed, I would contemplate if I should call the NICU for an update.  I didn’t want to take the nurses away from caring for the babies, but also it was so strange going to bed and not knowing how they were doing.  Once I would finally make my way to our bedroom, I laid on my side almost instinctively, but then would remember I no longer had a pregnant belly to navigate the perfect sleeping position around.  

Before turning over to my stomach to sleep, I would look over and see the empty bassinets next to the bed, where my babies should have been.  I remembered when we set it up and how everything seemed so exciting and surreal that we would be parents and how my husband and I joked about who would be waking up to change diapers in the middle of the night.  It all seemed like a distant memory that was stripped away as I now looked at the empty, quite beds.  

I would wake every three hours to pump so that when my twins were ready for breastmilk, I could have a supply built up for them.  Sitting in the living room alone in the dark, watching videos of my son and daughter that I had taken earlier that day and holding on to a towel they had been laying on was a far cry from the way I had envisioned feeding my children.  Somehow though, this was one of the things that kept me going. In my heart I felt so helpless, but pumping was the only thing in my control that I could do to help my babies.  So as lonely and depressing of an experience it was, I continued to pump for them.

About a month after giving birth, which had felt like an eternity, one of the nurses asked me if I wanted to hold Lane and Grace.  I was shocked and instantly began to cry and was filled with so much joy and fear all at once.  After a month, I was finally going to hold my babies!  

From the reports I received on their progress, I had been under the impression it would be much longer before this day would come.  I don’t honestly know if the nurse felt that my mama heart needed this to connect with them or if she was worried that they would pass without me having this opportunity, but either way, I was so happy.  It took a team of 3 people to carefully get Grace from her incubator into my arms ensuring that the tangle of wires and her breathing tube all remained in the right spot.  I put this little baby that was probably the size of a guinea pig against my chest.  It finally felt real for the first time; I was a mom.  I held them for as long as I could before having to put them back in their home.  

Over the next couple months, the hospital would become my second home and the nurses and doctors my new family.  We made it through some really tough decisions, and I truly felt so supported and heard by all of the team tending to my babies.  I would hold each baby for 3 hours a day each, which was the best part of my day, and while it was wonderful to be able to bond with them like this, I always felt like a little kid having to return the classroom pet to its cage as the nurses placed the tiny babies back in their incubators. 

As the months went on and they continued to grow, I was able to do more and more with them like change their diapers and give them baths.  Although sometimes it was hard to feel the connection with them, it was always so hard to leave to come home without them. I knew our twins were some of the smaller and earlier ones in our NICU, but it felt as though we had become residents as I would see other families in the NICU come and go.  My friends and family were supportive through the journey but as any normal person would wonder and ask without hesitation, “when do you think they’ll come home?”.  This was the one question that no one seemed to be able to answer with certainty and the one question my heart wanted answered more than anything.  

Megan Ueckert shares her pregnancy and NICU journey with Graham’s in this special series. This is part 3 of six.

Categories: Life in the NICU, Mothers of Preemies, Preemie Parent Voices
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The Delivery (part 3 of 6)

September 21, 2022 by

By Megan Ueckert

After being admitted into the hospital at 21 weeks pregnant with twins due to my daughter’s sac rupturing, I was starting to be ok with the fact that I would be spending four months on hospital bedrest. Around 2am the Sunday morning when I was 23 weeks and four days pregnant, I started to feel pains again in my back.  

I called my nurse and asked for some pain medicine and asked that she put me on the contraction monitor. She monitored me for about an hour and came back and said that she wasn’t seeing anything.  I took her word for it and drifted off into a pain killer induced sleep, thinking my back was just hurting from lying in bed for two weeks.  I woke up around 7am and ordered a big breakfast thinking that maybe if I ate something, I would feel better.  After finishing my breakfast, I called my nurse because now not only was my back hurting, but I could feel my stomach getting hard; I knew I was having contractions.  She put the monitors back on me and didn’t see anything, so she also put the fetal heart monitors on me.  Every time I felt a contraction, baby B’s (my son) heartbeat would dip significantly although the contraction wasn’t showing on the monitor still, so they called the on-call doctor.  

Dr. Walters came into the room with two nurses to examine me and checked me to see if I was dilated.  The nurses’ demeanor had suddenly changed from a caring and friendly smile to expressions of concern.  I had dilated 2cm and the stress of the contractions was causing baby B’s heartbeat to go down and they were concerned it was too much for him.  The doctor put oxygen on me and told me that they were going to move me to labor and delivery.  

As she told me this news, I remember sheer fear and panic setting in as my eyes were wide as saucers and then tears came uncontrollably pouring out.  It was too early for these babies! In my head I hadn’t even considered that I wouldn’t make it to at least 30 weeks.  Fear set in as I quickly realized what this meant; I may be giving birth to twins that aren’t able to survive.  While they were considered viable, they would be so little, I knew they would have a very hard battle.  Through the fogged-up oxygen mask, I asked Dr. Walters to call my husband Joe to let him know what was going on so he could come back up to the hospital after his brief respite. 

My bed was wheeled into a small L&D room.  The nurses covered me in ice packs and told me they were going to be injecting magnesium to help prevent brain bleeds for the babies.  I have a high pain tolerance and with all the adrenaline, I didn’t think I would feel much.  The nurses warned me they had to push it as quickly as they were able to help the babies as much as possible before I had the c-section.  

I felt like someone had just set my body on fire and I halfway expected to smell smoke as I suffered through the process.  Joe walked in all gowned up and ready to go sometime between the first and second bag of magnesium.  The nurse came in and said we’re scheduled for a c-section at 3pm.  It all seemed to be happening so fast that none of it was really setting in.  

They took my bed into the operating room where the anesthesiologist was waiting for me in what felt like a very small room with two empty incubators and a sterile silver table that was reminiscent of an autopsy table a cadaver is placed on in the movies.  At the direction of the doctor, I was to sit on the cold silver table so he could give me my spinal block.  I was a little scared about the long needle entering my back, but it wasn’t like I had a choice, so I followed the doctor’s instructions as he injected my back and then had me lay down on the table. 

 A sheet went up in front of my face where I couldn’t see the rest of my body and my arms were strapped down as if laying on a cross.  I heard the voices of people begin to enter the room and finally saw Joe standing there by my head.  I was in shock and going along with everything that was happening, but not fully processing that my babies were about to be born.  I was talking to Joe when my ObGyn walked in and heard her say “she can’t feel this” as she assumedly was pinching my abdomen.  I started to feel my body convulsing uncontrollably and in fear looked up at the anesthesiologist who was standing by my head when he quickly assured me that was a good sign that the block was working.  

I was shivering like I was freezing, but I wasn’t cold and couldn’t wrap my mind around what was happening.  The start of the surgery was somewhat of a blur as I was so scared and upset that they were coming so early and that I had to have a c-section.  I felt a lot of pulling and tugging and then heard a very weak baby cry; our sweet baby girl Grace came into the world weighing only 1lb 6 oz.  I couldn’t see her as they whisked her into one of the previously empty incubators and began to work on her and intubate her.  

There was more feeling of pulling and I heard the doctors say “classical” “Yes, confirming classical”.  I had no idea what this meant but remember thinking that it sounded like they were yelling out football plays and this must have been a change in their original plans.  I learned later that this was a vertical cut they had to unexpectedly make to get baby B out of me that would also prevent me from ever being able to have a natural birth should I have any other children.  3 minutes later, our son Lane was born, but without a cry, and was whisked away without me seeing him.  

I heard a lot of voices in the room and heard them all working on the babies and although there was a lot of chatter, I couldn’t really make out a single conversation.  The surgery was completed, and I was given some pain medicine to take the edge off and was wheeled into a recovery room while Joe went to the NICU with our new babies.  In the recovery room a nurse started helping me hand express my breasts.  I felt very out of it and didn’t really care that some stranger was milking me like a cow.  I was still trying to process everything that happened. 

What about the joy of birth and that keepsake photo of the happy and exhausted mother snuggling with her perfect baby on her chest?  I briefly felt sad for missing the birthing experience I had envisioned, as I was quickly panicked to realize I had no idea the condition of my babies or if they were even alive.   

About 30 minutes after being in the recovery room, my bed was wheeled into the NICU where I saw my babies for the first time.  I was out of it from the meds they had given me and only remember bits and pieces of seeing them.  I remember feeling somewhat lost as to what was going on, but that Joe seemed to really have a grasp on it since he had already gone to the NICU and seen the babies as I was recovering.  

I was somewhat resentful of the fact that he saw them first and we didn’t get to see them together and that it seemed like he totally knew what was going on and I felt left in the dark.  They were each in incubators laying on plastic bags that had splatters of blood.  They both had tubes down their throats and hats pulled down over their eyes.  They were smaller than my hand and their skin was red and felt like a gummy bear and their eyes were still fused shut.  I was still somewhat in shock of what all had transpired and don’t think my brain was really connecting that these were the babies that had been inside me for a short 5 months, in fact, they barely looked human.  

My bed was wheeled down a hallway past the visitor’s waiting area where family was awaiting to congratulate us.  I plastered a smile and thanked them for coming, but in my heart was not ready to celebrate.  I was wheeled to my room where I slept on and off the rest of the day; waking up only to pump milk since the babies would be on a feeding tube for a while.  

During my 3-night stay, I would go to the NICU 2-3 times a day to see the babies, but all I could do is look at them through their plexiglass prison as they fought for their lives.  While the incubators were needed to keep them alive and I knew this, the boxes felt like a barrier that kept me from being a mom.  

Megan Ueckert shares her pregnancy and NICU journey with Graham’s in this special series. This is part 3 of six.

Categories: Life in the NICU, Mothers of Preemies, Preemie Multiples, Preemie Parent Voices
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The 23 Week Mark (part 2 of 6)

September 16, 2022 by

by Megan Ueckert

Pregnant with my perfect little twins, I was put on hospital bed rest after learning my daughter’s sac had ruptured at only 21 weeks of pregnancy.  I spent the first few nights in a labor and delivery room where the nurses kept telling us the next few days were critical, almost like a mantra, we heard this over and over, not fully understanding what that meant.

I quickly learned that the pain I felt in my back before making my way to the hospital were contractions and they needed to stop so I didn’t go into labor.  That night, the nurse practitioner from the NICU came to visit with us.  He couldn’t offer much guidance as to what my hospital stay would look like or what the next steps were, just instilled in us the importance of making it first past the next three days without any further contractions and then to the next milestone of the critical 23-week mark.  I tried to ask questions to better understand what was so important about the 23-week mark, but he was consistent in advising to take one day at a time and we would have conversations throughout the way as we hit milestones.  

Although he had a very calm demeanor, I think I started to realize the medical situation was serious, although it still hadn’t crossed my mind that my twins wouldn’t make it.  The first few nights were terrible. I was so scared and not really understanding what was going on with my body as I continued to feel the painful contractions.  

Joe, my 6’4 husband, slept in the hospital room with me on a small reclining chair that folded out to somewhat resemble a bed and woke up to every sound I made, in fear of the worst.  I obeyed all the doctor’s orders and prayed a lot and thankfully made it past that first week.  I was then moved into another room into antepartum where I was planning to stay until I delivered the babies hopefully not for another 3 at the earliest.  Joe went back to work, so I laid in the bed, only getting up to use the restroom.  I felt a little depressed but tried to make a routine to follow to give me a feeling of purpose each day. 

I would wake up and watch the news for an hour, and then I would read a book for a few hours, then I would talk to a family member or friend on the phone, and then I would watch TV for a couple of hours before Joe came back up to the hospital to eat dinner with me, then I would go to sleep by 10.  

This reminded me of when I joined the Air Force and was in basic training for 6 months with a broken leg, when I should have graduated after 6 weeks, and how I wanted to be anywhere other than where I was and the mental and physical daily demands I endured. 

Until now, that was one of the most difficult times in my life.  As people constantly tried to be sympathetic and tell me they don’t know how I’m doing it, I would just tell myself that this is a cakewalk compared to my time in basic training.  Besides, I would do anything for my babies!  I kept a calendar near my bed where I could keep track of what day of the week it was, but also to count down the days and to be grateful for each day I got to mark off the calendar that I was still on bedrest and pregnant.

Finally, I made it to 23 weeks pregnant.  This was the huge milestone that I had prayed and prayed about.  As we approached the 23-week mark, I was informed this was where the babies would be considered viable, and we could ask for lifesaving measures.  If they had been born prior to this 23-week mark, they would have only received comfort care to peacefully pass away. 

The morning I hit this milestone, I anxiously waited for the neonatologist over Baylor to come talk to Joe and me.  Dr. Kappler entered the room, introduced herself and very matter of fact explained to us the difference between viability and quality of life.  Just because the babies are now considered viable, there was no saying what their quality of life would be.  

A million thoughts ran through my mind.  Would they be in a vegetative state?  Would they be constantly in the hospital having procedures done?  Would they be in constant pain? Would they be able to have a normal life and do things like play sports, go to school, live on their own as an adult?  At that point there was really no way to know what our babies’ futures would look like, but we had to make the very difficult decision of whether to have the doctors try to save their lives or to let them peacefully pass away if I were to go into labor over the next few weeks. 

 Joe and I discussed it and knew that we wanted to give them every chance they could get, so we asked for all life saving measures to take place whenever they were born.  I remember this day being very sad and just feeling very down and Joe did too.  There is a constant nagging in the back of your mind asking you if you are making the right decision and being faced with the potential reality of the challenges these children may have.  

I had so many mixed emotions that day as I was happy to have at least made it to 23 weeks, but I also was scared that I would still deliver early.  I didn’t know if I would really be able to handle taking care of twins that could potentially have significant health issues.  Joe reassured me that we could handle whatever came our way and that God gave us these babies in whatever condition because he knows we can handle it.  I’m sure we were plagued by the same fears, but we held it together for each other.  I asked the doctor when are we in the clear?  When can I stop holding my breath?  She said never.  You will always worry about your children and always wonder if they are safe and healthy until the day you die.  

At that moment I realized she was right.  Although what we were worrying about was different than what most new parents must think about, I will never be out of the woods and will always be worried about them.  I had to remind myself that all I could do was take it one day at a time and try to make the best decisions for my children.

Megan Ueckert shares her pregnancy and NICU journey with Graham’s Foundation in a special guest series. This is part two of six.

Categories: Mothers of Preemies, Preemie Multiples, Preemie Parent Voices
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The Journey Begins (part 1 of 6)

September 14, 2022 by

by Megan Ueckert

After what seemed to feel like years trying to get pregnant, IVF finally worked.  We were the 1 in 8 couples that faced fertility challenges and decided to try everything we could to become parents and ultimately sought the help of science with IVF.  It was a journey of way too many doctor’s visits, countless blood draws, nearly 150 shots, surgeries, miscarriage, lots of tears and even more prayers.  

We had transferred a single embryo twice before and the first one didn’t work and the second one ended in an early miscarriage, so we had the conversation with the doctor about trying to increase our odds by transferring two embryos.  He advised us of the risks not only to my health but also to the health of the babies and said that it increased my chances of complications and while it was a small chance that something would go wrong, asked if I was willing to potentially put my child’s life at risk by transferring two.  It was a difficult decision, but my husband Joe and I talked it over and after praying on it, we felt the right decision was to transfer two embryos, even against the advice of our doctor.  On April 1, 2019, we transferred the two embryos and about two weeks later I found out it had worked and then a couple weeks later found out that I was pregnant with twins.  

I was a little sad that I couldn’t conceive naturally, but happy to finally be carrying not only one child, but two!  Each week Joe would take a bump picture so I could watch the progress of the pregnancy.  I smiled especially huge as he took my bump picture at 20 weeks.  I was so happy to have made it that far and finally felt relief that everything would be ok.  Little did I know that would be one of the last bump pictures I would take.  

The day after my birthday, I had a rare in-person team meeting at work with my team flying in from all over the world.  During the meeting my back started to hurt, and I kept feeling the urge to push. It was much too soon for it to be labor pains, so I thought I had a kidney stone.  I was embarrassed that I kept having to get up from the meeting to go to the restroom and just did what I thought I needed to do to feel better.  My work team was throwing me a baby shower that day and I could barely make it through the shower. I was sweating and in intense pain, but I put a smile on my face and sat in the middle of the room opening presents.  
As soon as the shower was over, I went to the restroom and pushed what I thought was a kidney stone and had a rush of what I thought was urine.  Looking back, I feel so stupid and constantly wonder what would have happened if I would have just called the doctor when I started feeling the back pains.  I felt much better after using the restroom until about 30 minutes later when I felt the pain again and went to the restroom where I realized I was covered in blood.  As soon as I saw my blood-soaked thighs, I walked back to the meeting room to get my phone.  

On the way to the meeting room, I ran into my former manager who I had recently interviewed for a position in his department.  I had been looking for the next step in my career, but the opportunities had been limited.  He stopped me to let me know that I did well during the interviews and that he is going to offer me the job on Friday.  At that point the pain was getting worse, and I was shaking from fear of what was going on with my body as I felt the blood pool.  I told him that I was very excited for the opportunity and plastered a smile on my face. Then I excused myself to make a call to my doctor because I felt there was something wrong.  Frantically I called my doctor who told me to go to the emergency room right away.  I let a few of my team members know what was going on and they kindly got my car and put my haul from the baby shower in my trunk.  Several people offered to drive me, but I was stubborn and said that I could do it as I thought the logistics of getting my car later would be too much of a challenge and I just wanted to get out of there.  

I left work and drove myself to Baylor Scott & White in Grapevine.  I had planned to deliver at a different hospital, but the nurse on the phone told me my doctor also had permissions at Baylor, so I went there not knowing anything about their labor and delivery department, only that it was closer to my work than the hospital I planned to deliver at.   

My entire 8.8-mile drive, that felt like 200 miles, I just kept praying that everything was going to be ok.  As I pulled up to the hospital, I remembered the last time I was here; it was in 8th grade to see my grandma before she passed away.  The memory crossed my mind, but panic of the current situation kept me from lingering too long on the thought.  I called my husband, Joe to let him know I was at the hospital and being taken to Labor and Delivery.  I was only 21 weeks pregnant, why would they take me there, I thought.  

Joe arrived right as the labor and delivery nurse took me from the ER into the ultrasound room.  The doctor conducted his exam without saying much, which only added to my anxiety.  I could tell something was wrong by the look on the sweet L&D nurse’s face.  Finally, he informed us that baby A’s sac had ruptured.  At that time, I don’t think Joe and I fully understood what this meant. Joe explained that we were supposed to be getting on a plane in 3 hours to go to Florida for my grandma’s 90th birthday celebration and asked if we could still make it.  

The doctor said I wasn’t going anywhere and again with our ignorance, I asked for clarification thinking he meant just tonight.  He replied that I would be in the hospital on bedrest until I delivered these babies.  My heart sunk.  What about work? What about the new job I was being offered?  What about my baby shower?  What about my weekly bump pictures I had waited so long for?  How am I supposed to lay in bed for four months?  The picture-perfect pregnancy I had imagined after the disappointment of having to use IVF seemed to be fading away.  Still somewhat naïve to the gravity of the situation, I somehow didn’t even consider that my babies might not be ok. 

 I didn’t know anyone who had gone through this.  I had heard there was a possibility I would need to go on bedrest towards the end of my pregnancy but didn’t really understand why.  I had no clue this hospital would become my new home and had no idea the journey that our family was embarking upon.

Megan Ueckert shares her pregnancy and NICU journey with Graham’s in a series. This is part one of six.

Categories: Life in the NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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Milestones

September 1, 2022 by

Here we are about to hit another major milestone in our prematurity journey, and I have mixed emotions. I want to be excited but with this milestone comes a loss for us. A loss of another fantastic team of professionals that will visit one last time but when they walk out the door this week, we will say “goodbye” not “see you next week.”

I am a mother to two beautiful daughters. My oldest daughter was so eager to hit new milestones on her own that my husband and I could take a backseat and just watch in amazement. She was walking by 10 months, fully potty trained at 2, holding actual conversations with anyone who would listen by 3, even riding a two wheeled bicycle by the age of 4. When I say we sat and watched, we sat on the sidelines and watched. She figured it all out on her own. 

Our youngest on the other hand, born at 29w6d, needed a lot of support.  First, the support of her amazing medical team in the NICU for the first 73 days (about 2 and a half months) and then at home support with our therapists from First Steps.  Throughout the past 2 ½ years, we have had speech therapists, developmental therapists, physical therapists and occupational therapists in our home.  While she only needed short term developmental and speech therapy, our physical therapist and occupational therapist have been here every week for the past 2 1/2 years. They have become an instrumental part of our journey, and truly, a part of our family.

As we prepare a Minnie Mouse birthday party for our daughter’s third birthday, I have mixed emotions.  I am amazed at the progress she has made, much in thanks to these two ladies. When we started, she was so weak, could not hold her head up, even struggling to eat and drink. She is now running around the house, climbing steps and rock-climbing walls, hanging from her Big Sister’s gymnastics bar, eating,  and drinking non-stop, and is the happiest little girl. I prayed many days for this day to come, and now that it is here, I am wishing time would slow down just a bit. Not only have Jessica (Physical Therapist) and Moriah (Occupational Therapist) both given my daughter the tools and guidance she needed to achieve this milestone, but you have also shown her love and compassion and built a level of trust with her that is more than we ever could have wished for. When she says, “love you,” no doubt in my mind that she truly means that. We all do.

For me personally, I want to thank you both for being my “safe place.”  I have shared so much with you both over the past couple of years, you have certainly seen me at my worst, you have seen me feel completely deflated trying to balance the stress of a full time position and a mother balancing the multiple appointments and therapies their child needs, you have seen me fight to hold tears back when it just became too much, but you are also seeing the beginning of this new phase for me.  Because of how you have both treated my family, you have motivated me to completely switch careers and to work towards finding a way to give back in a similar capacity for future families that will be in similar shoes as ours. You both will always have an incredibly special place in my heart.

When you walk out the door this week, know that I will not say “goodbye,” but a “see you later.”  I truly hope that our paths cross again, whether professionally or personally. Thank you both for helping put our broken family back together.  Thank you for loving Holly, showing love and compassion to all of us, and for including Emmy in the therapy sessions. Most importantly, thank you for reminding me just how strong we truly are. We will all miss you so much!

Amanda Tellmann is an adoptive and bio mother to two beautiful daughters, her youngest being born at 29w6d.  Amanda joined the Graham’s Foundation team as the  Care Package and Community Outreach Coordinator.  In her free time, she enjoys journaling, crafting, DIY projects and home organization.  Her greatest passion is spending quality time with her husband and daughters.  She finds that playing dress up, organizing impromptu dance parties in the kitchen, or spending an hour playing during bath time is the mental break that all mothers need from time to time.

For more information about Graham’s Foundation: www.grahamsfoundation.org. Find Graham’s Foundation on Facebook, Instagram, Tik Tok, YouTube, Pinterest, LinkedIn and Twitter!

Categories: Early Intervention, Preemie Parent Voices
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The First One

June 19, 2022 by

by Brendan Hilliard

Remy and family in the NICU

My son Remy was born at 27 weeks and 3 days gestation two years ago this month. He arrived on June 10, 2020, so my first Father’s Day, 11 days later on June 21 came very unexpectedly, an entire year earlier than I thought it would. 

Fathers’ Day holds a special significance for me as it was the first day I ever held my son. I have to admit that becoming a Dad as early as I did came as an enormous shock, as it would anyone in that situation, but I kept telling people I didn’t ‘feel’ like a parent. I just was *there*. I didn’t physically experience what my wife Ali did. Whether it was the shock of the moment or total fear, I had a hard time connecting to this baby in the plastic box. 

It all was so much. The days I spent with Ali in the hospital feel like an enormous blur. For example, I can’t hear the chorus of “Rise Up” by Andra Day without the blood feeling like it’s draining from my body. The hospital played it over the loudspeakers whenever a COVID patient went home. It certainly was a sweet sentiment, and a true triumph for sure, especially in those early months prior to the vaccine. It’s the gauzy sound from the hallway in Ali’s hospital room for eight nights. After those were over, we went back to our house and to our dogs. We didn’t even have a nursery set up yet. It was like nothing happened at all. 

Remy weighed 1 lb, 11 oz at birth and yo-yoed between that for a few weeks. He was still on a high frequency ventilator and had only improved enough for my wife to hold him a day or two earlier. I was still terrified and I knew holding him would be a bit of an ordeal – it would take at least two nurses to transfer him and I’d have to remain incredibly still for a minimum of an hour. I was simply too afraid to do it.

We lived 40 miles away from the hospital where he was born – our local NICU could not support babies born at his gestational age. She was rushed in an ambulance to a hospital in Chicago. This necessitated an 80-mile round trip drive in and out of Chicago on a daily basis. At the height of COVID, only one parent was allowed in the NICU at a time. This meant that Ali and I spent virtually no time together with our son in the NICU outside of the initial hospital stay, prior to him coming home. Over his 75 day stay, cumulatively, we saw him together 3 times. So, Ali and I would use these drives to talk about our hopes and dreams for when we’d get to take Remy home. I just remember being so scared of holding him. 

Ali told me the first time she was able to hold him outside of the isolet is when she started to feel ‘whole’ again after having him so early. I struggled to relate. She kept encouraging me to try to hold him. Four days after, which happened to be Father’s Day, I decided it was time.

I remember the nurses describing to me that ‘skin-to-skin’ was best, so I had to remove my shirt and that they would have to gently place him on me. One nurse held him while the other held his tubing. I remember staring at his monitors to check his heart rate and O2 levels and whenever I felt anxious, it could potentially make his rise, so I had to slow my breathe to slow my heart rate down. It frustrated me so much. But then something clicked as I held his bottom and stared down at his tiny head.

I felt that sense of wholeness that Ali talked about. That this living, breathing little being was actually part of me. Someone I was responsible for. That what I was doing at that moment was the best and most responsible thing I could do. To be a parent. To set a good example. To be brave when you’re scared. Eleven days in, I truly felt I crossed the threshold into parenthood. 

Of course, that’s my erudite explanation. The notes I actually wrote directly after the experience read: The only way I can describe the feeling, other than amazing – is that it was like holding a moist puppy with a human face. Think about it. You can imagine that!”

The thing is, I still can! That puppy with a human face just turned two. I am filled with tremendous gratitude that he has grown into an active, buoyant little boy that tackles any hurdle with aplomb. Remy has a great sense of humor, a love of music and plenty of love to give. He’s fearless. If I only had that fearlessness two years ago when I was scared to even hold him. But I started learning from him that day when I finally did. Today I’m still learning from him. He sets that example every day.  What a cool thing it is to be his Dad.  

Categories: Fathers of Preemies, Preemie Parent Voices
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Trust Your Gut – A Mother’s Intuition is Always Right…

June 9, 2022 by

…But what if trusting your gut had failed you once before? 

As a mother to two daughters, shouldn’t I be a parenting expert by now, or nearing a certification of some sort? After all, the advice we received from experienced parents when we are expecting our first child, all the parenting books we read in preparation of their arrival, after we spend every minute of every day staring at our child, when it comes to baby number two, it should be a breeze…. right?

My oldest was four years old when we found out we were expecting, an April Fool’s Day surprise. As we had struggled for years with fertility issues and a miscarriage, we kept the news to ourselves for the first trimester. After the first trimester, like many, we began to relax a little bit, thinking we were in the “safe zone.”  In hindsight, I had an easy pregnancy.  

It was not until a regular checkup at 29 weeks (about 6 and a half months), I was told my blood pressure had skyrocketed. We were asked to come back to the office the next day to have my blood pressure checked again. On the way out of the office, a nurse reiterated the importance of calling the after-hours number if I had any symptoms whatsoever.

About one in the morning, I woke up with a horrible headache. I took some Tylenol and was about to lay back down when my husband told me I should call the after-hours number. I told him it was not needed because I would be seeing the doctor at 9 am the following morning. He pushed for me to call, so I eventually gave in and dialed the number.  They asked me to go to the hospital for a blood pressure check. Moments later, I was strapped to a bed and told that I would be delivering the baby ASAP, in order to save my life. 

That night was terrifying for me.  Fortunately, for my sake and for my daughter’s sake, they were able to help regulate my blood pressure, allowing her to grow for 3 more days before making her grand arrival on 9/1/2019 at 29 weeks and 6 days.

IF I HAD TRUSTED MY GUT AND WENT BACK TO BED UNTIL MY 9 AM APPOINTMENT THE FOLLOWING DAY, WHO KNOWS WHAT WOULD HAVE HAPPENED?

Fortunately, my husband made the right decision for my health and our unborn child.

Being a Preemie Mom has changed my life. For months, well to be honest the past two years, I have struggled with the amount of guilt that came along with this title. The “what-ifs.” 

  • WHAT IF I would not have called the after-hours number because of a headache?
  • WHAT IF riding a baby waterslide at Holiday World the week before with my oldest caused me to deliver early?
  • WHAT IF I was not eating the right foods, drinking enough water, exercising enough? Would it have made a difference?
  • WHAT IF I made a mistake by focusing my prayers before surgery on my survival so I could get home to my oldest? Why was the health of my youngest not my top priority? As a mother, shouldn’t we always put our kids before ourselves? (I am still processing my feelings on this one…. it is one of my worst moments as a mom.  Why was my top priority not my unborn child?)

The guilt did not stop after she was born. I now had to work through the guilt I had for not being the first person my daughter felt, the first one she got to see. Due to my own medical challenges, I was not able to see my daughter for about 48 hours. I was terrified. I did not want to go to the NICU to see her. I was told the risk to myself and to my daughter’s survival rate prior to surgery. Would it make it easier to handle the possible loss if I did not let myself feel connected to her? What if I choose to never meet her, would that help lessen the pain that I was feeling in that moment? 

I forced myself to go up there.  It is a scary place, alarms, cords, so many physicians, parents that look drained. It was terrifying, but I did it.  Everything started to change when I was allowed to touch my daughter for the very first time.  I knew in that moment that we had a long road ahead of us, but I could feel her strength, the power of prayer, and knew that she needed me to be as strong as she was for us to come home as a family of four.  

I am so incredibly fortunate for her primary medical team.  Her nurses, respiratory therapists, nurse practitioners, and her doctors not only helped her find her strength but helped me as I processed the trauma that we had both been through.

My daughters are now six and two and a half.  While I thought I would certainly be a parenting expert by now, that is certainly not the case. Not even close, but I hope that by sharing some of my personal take-aways, I can help other preemie parents navigate their own personal journey. 

  • The prematurity journey does not end when you walk out of the hospital for the first time with your preemie.  Phase two begins. As scared as you were on Day 1 of the NICU, some of those feelings will come back to you, but you have just witnessed how strong both of you are. You can (and will) handle whatever comes your way.
  • A piece of advice from one of my favorite nurses, “Whatever you are feeling right now is exactly how you are supposed to be feeling. If you are happy and want to laugh, laugh.  If you are scared and need to cry, cry.  If you are mad, that is okay.”  That piece of advice was instrumental to me as I navigated our 73-day (about 2 and a half months) NICU stay, but still plays a role in my day-to-day life today.
  • It is true, the little things, are just little things, but all are worth celebrating.  I am in complete awe of not only my youngest as she figures out new milestones, but I stop and slow down to appreciate the milestones my oldest has figured out, as well.
  • It is okay to be vulnerable, especially with your immediate family.  It became apparent that both, my husband, and I, were trying to be strong for the other and both of us were struggling.  It was not until we brought our daughter home that we began healing together.  There is trauma for all involved…. lean IN, not outward.
  • You never realize how strong you are until being strong is the only choice you have.
  • YOU ARE NOT ALONE.  The hospital had a social worker that would come in and check on me often. I was not ready to talk about the trauma that we had experienced so I always responded with “I’m fine.”  It took a late-night Google search, about four months in to our journey, for me to find Graham’s Foundation. I was connected to a parent mentor, who helped me tremendously. Simply hearing, “We had a similar experience. It is hard…. I understand how you are feeling” was exactly what I needed to hear. Help and resources are available…. please take advantage. 

While I am still working to trust my mother’s intuition again, I celebrate the growth that I have had over these past two and a half years. Our prematurity journey, while scary and an emotional rollercoaster at times, has made us who we are today. We have a new saying in our home. We no longer allow the “I can’t do this” mentality, rather we simply say, “I haven’t figured this out yet.”  While we have been faced with incredibly hard challenges, we are also aware of our strength and determination.  We are no longer afraid to say, “I need help.”  While we thought it was a superpower to do everything on our own, we realize the true strength is in asking for help, or accepting help, when needed. Our faith has been restored.  The power of prayer was instrumental in our journey and continues to be the center of our life today.

Do you believe in miracles? 

I do.  Two miracles call me Mom.

Amanda Tellmann is an adoptive and bio mother to two beautiful daughters, her youngest being born at 29w6d.  Amanda is a full time college student and recently joined the Graham’s Foundation team as the  Care Package and Community Outreach Coordinator.  In her free time, she enjoys journaling, crafting, DIY projects and home organization.  Her greatest passion is spending quality time with her husband and daughters.  She finds that playing dress up, organizing impromptu dance parties in the kitchen, or spending an hour playing during bath time is the mental break that all mothers need from time to time.

Categories: Life in the NICU, Mothers of Preemies, Preemie Parent Voices, Supporting Preemie Parents
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Advice to NICU Parents from a NICU Parent

May 3, 2022 by

by Kimberly Solis

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.

Atticus at 11 months!

Categories: Life in the NICU, Preemie Parent Voices
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Sharing My Story

April 11, 2022 by

by Connie Adams

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. 

Categories: Life After NICU, Mothers of Preemies, Preemie Parent Voices
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CP Awareness & Parenthood

March 25, 2022 by

by Kristina Mulligan

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

Categories: Preemie Parent Voices
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