I am the mother of a premature baby….I took my vitamins and went to all my doctor appointments. I did not eat certain foods or drink and still had a baby born at 23 weeks.
Premature birth can happen to anyone, at any time in their life. It can happen to you, your child, your grandchild, your best friend; it does not discriminate in who it chooses or why. When you are the parent of a premature baby your whole world will stop.
You will cry yourself to sleep at night and pray your baby lives another second, another minute, another hour, another day. You will ask God – if He so chooses – to take you instead of your tiny child. You will fall to your knees every time your tiny baby stops breathing.
You will be told your baby won’t survive and you will be given every reason in the world why you should disconnect the wires, tubes and machines that are keeping your baby alive. And you will be told you’re cruel for letting your baby live.
You will stop sleeping and every time your phone rings your heart will drop to the floor because you fear the worse. If you’re blessed enough to make it home with your baby-sadly, some don’t!-you will know way too many medical terms that no parent should ever have to know.
You will know how to work oxygen machines, give infant CPR, how to stick a feeding tube down their nose into their stomach. You will learn sleeping doesn’t exist because alarms go off all night from the monitor sent home with your child that tells you when he stops breathing or his heart rate drops. You will get thrown up on several times a day but, you will give thanks to God that your baby is here to throw up on you!
My daughter, Ella Mae Grace was born at 23 weeks, weighed 1lb, 4oz and was 10 1/2 long . Now she is 12 years old, 4’6″ tall and weighs a whopping 98lbs! She is a perfectly healthy and active girl. No one would ever guess she started so small.
***NOVEMBER 17 is National Prematurity Awareness day and the entire month of November is Prematurity Awareness Month!***
Please wear purple to bring awareness to this issue so someone you love doesn’t go home from the hospital empty handed!
I never really stopped to ask myself why this happened to me, but more so became upset that it was happening. My husband Joe always would remind me that we’re a strong couple and there’s nothing that we can’t handle, and that God would only give us what we could handle, which became almost a mantra that we repeated through the IVF journey, and when I was admitted into the hospital on bedrest at 21 weeks pregnant when my daughter’s sac ruptured, and when our twins were born at 23 weeks 4 days, and during our 157 days in the NICU.
While I also felt the truth of this, I couldn’t help but feel slighted or angry that things didn’t work out as I thought they should have from the way we got pregnant, to the loss of a full-term pregnancy and all of those experiences, to all the ups and downs of having NICU babies.
At times the anger would be directed at different parties. I was upset with work, thinking that the stress of my job put me into early labor, but who knows if that’s true. I was upset with my doctor that she didn’t more closely monitor me or allow me to see a neonatologist even though I asked several times. I thought that she should have caught some sort of signs that this was going to happen and do something to prevent it, especially since I was a high-risk pregnancy to begin with. I was upset with her when I went into labor and had to have a c-section because the on-call doctor had told me they would do everything they could to delay the delivery and then once my doctor was involved, we were quickly moving to a c-section.
I don’t know to this day if it could have really been delayed or if my doctor just wanted to get it over with and have the c-section. There were times I was angry with the NICU doctors for not being able to tell me what was going to happen with my babies and feeling like they weren’t doing everything they could to help them. I was angry with the NICU nurses for being more of a mom to these babies than I was.
I am a planner by nature, and the entire journey caused me significant anxiety. I hated that everything was unknown and that one day the babies would be making amazing progress and the next day they would be two steps back. At one point, I sat down with one of the NICU doctors and he said to me that he could see that I was a type A personality kind of person and he said that he is too. He continued to state that the NICU is hard for people like us and that you need to think about it like reading the Odyssey. It’s a big book and you have to read each page in order, one at a time to understand the story. Sometimes if you just try to skip to the end, you miss the story.
This resonated with me and really helped me to change my ways in trying to control everything and learning that sometimes you really do just have to take it one day at a time. I’ve noticed that this has impacted my view of things and I’ve really started to try and let go of the control. Life is messy and isn’t always going to be perfect and no matter how hard I try to control it, there will be times that I just have to go with the flow. Before this experience, if something bad happened I would get caught up in “this isn’t the way it’s supposed to be” and ask myself why? I’ve learned that I need to reframe my thinking and look at the positives in the situation and see the growth that I experience through challenges.
I wouldn’t wish the NICU on anyone, but for the moms that delivered a premature baby, I would say to take your time to mourn the loss of your image of what your pregnancy should have been, but don’t get lost in feeling sorry for yourself because there are lessons you will learn along the way that will change you into a stronger person than you ever imagined you could be.
Know that the road is long, hard, and bumpy and that as much as you want to have the answer to the question everyone will ask “when will your babies come home”, that you just have to take it one day at a time and celebrate the successes and let the realities of the challenges set in. It’s also easy to lose yourself in the process, but as you are there doing what you can for your baby, it is equally important to take steps for yourself as well.
While my twins were in the NICU, I took the time to see a counselor to help me process all the emotions of everything going on. It was helpful to have someone to open to even though she didn’t understand all I was going through so that I didn’t constantly feel like I was dumping on my husband.
It also allowed me to heal mentally from the trauma…. yes, a premature birth is a trauma for both you and your baby. You may continue to have PTSD when you learn of a friend who delivered a healthy baby or hear an alarm or noise that brings you back to a memory from the NICU, or when you drive down the same roads you once took to visit your baby at the NICU.
I’m not sure you ever really heal from the NICU experience but doing what you can to prepare yourself mentally to be the best mother you can be when your baby does come home is so important.
Although I don’t know what the future holds and what challenges they may continue to face, I try to remember the advice of the neonatologist, when I asked when I can “stop worrying” as I sat in my hospital bed at 23 weeks pregnant uncertain of what the next few months would look like. She said that I will worry about my kids until the day I die. I know deep in my heart that while some days are harder than others, Lane and Grace will continue to be fighters their whole lives and will continue to teach Joe and I many life lessons.
Megan Uekert is mom to boy/girl twins. Her husband Joe and their family reside in Texas. This is the sixth and last part in the part series.
If you or anyone you know is struggling after having a premature birth, please reach out to Graham’s Foundation for support and resources. www.grahamsfoundation.org
A few months back, I was on a friend’s podcast talking about my story and my work. She asked me a question that I had not been asked before: Define what a loss mom is. It took me a second or two, but I explained that it uses the word mom, which is what I am and what I have been throughout this journey, and it also uses loss which means it encompasses all the losses that have been involved.
The “loss” portion of the term I choose to use includes of course my two most serious losses: Sweet Pea (lost at 7 weeks pregnant in 2017) and Colette (lost at 9 days old in 2018), but it goes beyond that to include the loss of conceiving naturally, the loss of control over when we would get pregnant, the loss of milestones of where I thought we would be, the loss of pictures in my mind, the loss of what I thought pregnancy and childbirth would look like, and so on and so on.
Since the time I got asked this question, I have tried to be more diligent in explaining it instead of just assuming that everyone around me understands the term and why I choose to use it. But, what has kept standing out to me is that my explanation does not really encompass all that it means to be a loss mom. Then, recently, when a good friend went through yet another loss, I sat down to really think about what these experiences mean going forward in an attempt to truly answer and truly give insight into the question: What does being a loss mom mean?
There are a lot of things it means and for most aspects, it also means a lot of layered, often conflicting emotions.
It means that I am always grieving. Having another child, although amazing and wonderful, did not take away the grief. Time does not heal, contrary to the popular saying. I am always missing my babies and the picture of what I thought raising kids would look like, a picture that I was forced to redraw multiple times.
It means that when people post or share news of pregnancies, I am angry that it happens for them, but not for me, and yet I also have a feeling of panic and hope that they never have to go through any loss.
It means that at any given time, I have a handful (or more) of fellow loss parents who are currently pregnant or expecting and I have them in my heart and on my mind for however long their pregnancy lasts. It also means that I have met so many loss parents in my journey of support so all those scary loss stories, I’ve heard them too, and have to not live in constant fear of them happening to me or someone else.
It means that when a friend has a loss, my heart breaks for them because I know all too well what it feels like and that I want to throw up my hands and give up and I want to scream and rant and rave at the universe, while also wanting to wrap my arms around my friend and take away their pain.
It means that I feel guilty A LOT. Yes, mom guilt for all moms is real and it is big, but when you have lost a child, the guilt is even worse. I worry about my son growing up spoiled because he will not have his big sister at home to knock him down a peg or two. I worry that my son will one day be mad at me that we didn’t have more kids. I worry as to whether keeping Colette alive as his big sister and talking about her is the right thing or if I should do it differently. And all of this makes me feel so guilty because although I know this is not the case logically, it feels like it was my body at fault, my body that failed.
It means that simple sniffles or colds feel overwhelming to me. If LL Cool T coughs, my mind instantly goes to it is Covid and he is not going to survive. And while I am sure most parents are guilty of making these leaps, only loss parents truly know what that means and what that feels like. It means that in the midst of a global pandemic, I was terrified to leave the house, terrified to take him out, suspicious of everyone we passed on the few times we did go out, because instead of fellow shoppers or patients, I see them as the causes for my child’s death.
And yet at the same time, it has opened me up to be a more laidback parent, to say make the mess, have fun, and as long as you are here and alive, we are good. LL Cool T gets into dirt, he plays with his food, he takes jumps and dives that I would never dream of doing, and yet, he does it with encouragement of his mom. This is because I realized after everything we went through that following all the rules all the time does not necessarily equate to successful outcomes. Plus, I learned that enjoying the moments for as long as we have them is really the most important thing.
There are so many complexities and levels to being a loss mom, but the one that I think summarizes it best is that being a loss mom is forever being permanently exhausted. Grief is exhausting, holding onto hope and worry for others is exhausting, battling your inner demons that say things like it is your fault is exhausting. So, I will rest when I can, try to turn off my mind that is always going, and focus on the here and now.
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.
The NICU is a place that changes a person. The sounds of babies crying and alarms sounding every second and lights flashing creates an environment of chaos and constant panic. You learn more medical terminology than you ever thought possible as you ask your nurse and doctors about bradycardias and weight gain and feedings.
Your heart will stop momentarily with every new test result. You will have days you have to make hard decisions and days the doctors have to make the hard decisions for you. You will have days that you want to scream because you can’t understand why this happened to your family. Then you will pick yourself up because you have no other choice.
You will feel like your baby’s medical team is more of a parent than you are as they are telling you what the different cries mean or the way your baby likes to be held. You learn that you can’t plan or anticipate anything and as hard as this was for me, you just have to take it one day at a time. You will feel so sad that the majority of your child’s first months of life will be spent being poked and prodded for lab tests and assessments and will lay in a crib alone in a hospital all day instead of at home in your arms, and that they may feel more comfortable with their favorite nurse than they do with you. It’s heartbreaking to look out the window at the sun with anticipation of the day, your baby could go outside to feel the sun’s warmth on their face or a cool breeze.
The week of Christmas, I received the news that my son would be able to come home. I was so excited that I could finally answer the stabbing question “when will they come home”, but it was bittersweet that my daughter would remain in the hospital alone as we continued to work on her feeding. I remember one of the NICU nurses telling me that the last few weeks are sometimes the hardest. You are ready for you baby to come home and over the NICU experience and just want to try and hurry up the process to get home.
This resonated with me as I became frustrated trying to get my daughter to take a bottle or breast or anything. She wouldn’t wake to feed or would eat very little. I tried to play games, sing songs, hold her different ways, try different bottles and nipples…anything to try and get her to eat so we could just go home. There were days where it felt like she was finally getting it and then the next day she wouldn’t eat anything.
The decision was finally made to transfer her to a children’s hospital for a swallow study and evaluation for possible g-button. The teddy bear transport team came with their incubator on wheels to pick my daughter up to transport her to the downtown hospital. It all seemed to happen so quickly that I wasn’t able to say goodbye to the family I had made at the NICU.
When we arrived at the new hospital NICU everything was different, all the processes and rooms and people. I felt overwhelmed like I was entering the NICU all over again. The people I had grown to trust with my babies weren’t there and the hospital seemed so big and impersonal. I think my husband felt the same way when he would visit and feel somewhat lost as to who everyone was that would come into our daughter’s room. I had to remind myself that some of the sickest babies are the ones that come to this hospital and by their standards our daughter was probably one of the healthier ones at that point.
Although we were in what seemed like a foreign space, I was there every day trying everything I could convince the nurses and doctors to try to get my daughter to eat. After a month of pleading and convincing the doctors to give my daughter more time, we finally made the decision to move forward with the g-button surgery. Yes, I wanted her to go home and simply saying yes to the g-button probably would have gotten her home earlier, but I was pulling for her to figure out the whole eating thing. I hated to think about her being put under for a surgery and was scared about her ever learning to eat and what her life would like if that was the case.
157 days after giving birth, my family was finally all under one roof where I could cuddle them anytime I want, learn their different cries, and be the one to put them to sleep at night. The journey was exhausting and nothing I would wish upon anyone, but if it had to happen to a family, I’m glad it happened to ours. After being born at 23 weeks 4 days by emergency c-section and months in the NICU, Lane came home on oxygen and Grace came home on oxygen and with a g-button.
I would imagine any new mom is terrified when she brings her first baby home from the hospital. I mean, it’s not like the hospital sends you home with an instruction guide. Bringing twins home with wires and tubes certainly intensified my anxiety, but my husband Joe always assured me that we could handle it. I kept thinking, hey…at least we’re all home now. This is when we get back to normal life, right?
Our twins were both home in January, so as hard as it was, we had to ask family and friends to stay away from fear of RSV. We let them know that hopefully once RSV season was over, they could finally meet our sweet babies. Well, March 2020 changed everyone’s lives across the globe with the introduction of the COVID-19 pandemic.
Our family remained in voluntary lock-down for pretty much the next year, only allowing select family members to come see our babies. Both our son and daughter were receiving therapy through Early Childhood Intervention services and the therapists quickly became our new family as there were some weeks where they were the only other people we saw. Even though we were now home from the NICU our family had to continue to learn new medical terms and work with doctors, nurses, case workers, and insurance companies to advocate for their continued health and success. I truly feel that our ability to educate ourselves and advocate for our babies was critical to the level of care and ultimately their health outcomes.
Now our little warriors will be turning 3 years old shortly. Both are off oxygen, and our daughter eats anything you set in front of her. I know the journey for both is long from over as we continue to work with therapists and do everything we can, to ensure they aren’t developmentally behind. It still amazes me today, when I think back to the first time I saw them with gummy bear like skin and eyes fused shut and how many times their stories twisted and turned and could have ended up a million different ways.
Megan Ueckert shares her pregnancy and NICU journey with Graham’s in this special series. This is part 5 of 6.
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.
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.
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.
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.
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.
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Graham’s Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3). Our mission is to inform and guide parents of preemies so that they may confidently navigate the journey of prematurity.