Our Little Warrior
“You’re going to be monitored extremely closely throughout your pregnancy, you are considered high risk” the words no-one wants to hear is what we heard at our 12 week ultrasound. As soon as I heard those words, I heard nothing else. I heard the words, but I didn’t hear them if that makes sense. Tears silently streamed down my face. I was speechless while Lee asked all the right questions. This would be a trend throughout our appointments moving forward. I would cry and Lee would ask the questions and then explain it to me once I pulled myself together.
Our sweet baby was diagnosed with a rare birth defect called Gastroschisis. So rare in fact that my document is underlining it telling me it’s a spelling mistake… no, not a mistake. A harsh reality for first time, scared shitless parents.
If Gastroschisis sounds as foreign to you as it did to us, it is a birth defect of the abdominal wall. The baby’s intestines are found outside of the baby’s body, exiting through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also be found outside of the baby’s body. If you have not heard of it, you will likely take to Google, and I want to warn you, it is quite graphic.
Like most traumatic experiences, there are different phases of coping. The first was complete shock and devastation. How could this be happening? Why us? And of course the guilt. What did I do to cause this? I forgot my prenatal vitamins that one day. That had to be it. I took on too much stress in the beginning and was pushing myself too hard. That also probably added to it. I had a glass of wine while I was pregnant and didn’t know it. Yup, that was for sure it. For the first few weeks, all I did was run through every scenario and decision I made in those first few months to try to find out how or why this happened. I have since come to the realization, I will never know why our sweet babe has to fight this fight. But, leave it to my mom to say the right thing:
“This baby was waiting up in Heaven for you and Lee. God chose this baby for you two because He knew you could handle this. You two are strong and will give everything and anything for this baby to be healthy”.
And just like that the anger left my body. Now, don’t get me wrong it creeps in every once in a while. I still have pity parties and feel those “why us” feeling, but when they do I remember those words and they help. The anger is replaced with hope and a determination to be the strongest version of myself for this baby.
The next stage for me was grief. I had to grieve what I had always dreamed my babies birth would look like. The picture society paints for you is so beautiful. The final push, that precious skin to skin time immediately after, the snuggles and first feedings in the mother baby unit, leaving the mother baby unit with a baby only a few days old, the newborn photo session, and the list goes on. These are all thing I heard my friends describe as the most beautiful part of birth. Those would not be a reality for us. Immediately after our baby is born, their body (from the chest down) will be put into what looks like a clear plastic bag to protect the organs, and sent off the NICU to prepare for surgery. Lee will go with baby and I will stay in the mother baby unit to recover. No skin to skin time, no newborn snuggles, no breast feeding, no alone time as a family of three. Wow, I am definitely having a pity party as I am writing this.
Moving onto the third stage. It’s hard to keep up I know. Throughout this whole process, I have learned to practice gratitude even more than ever. I am grateful I was able to get pregnant and carry this child. Grateful my pregnancy has been good to me. Physically, I have been feeling relatively good. I am grateful they diagnosed the baby at such an early stage so we can be prepared. I am grateful for our healthcare system. The specialist and ultrasound appointments I have every two weeks where we get to see our Bub. Grateful for my niece who was born with a rare heart condition but is not defined by it. She is a true warrior and seeing her reminds me how resilient babies are. Last, I am beyond grateful to have the best partner I could ask for. Lee has been my rock through this all. He is constantly researching, asking the questions while I cry those silent tears through nearly every appointment, taking me to the hospital without question when I have the tiniest spot of blood, holding me when I cry, cracking jokes at just the right time, and reassuring me when my mind is spinning and taking me to dark places. I cannot imagine going though this with anyone else.
This blog post is getting longer than I anticipated it would. It is quite frankly turning into a little bit of a mini therapy session and you all just happened to be along for the ride, haha! But before I wrap up, I know you likely have a lot of questions around our specific case. Although we won’t know exactly know how severe it is until baby is born, we do know that our baby has Gastroschisis not Omphalocele which are commonly mistaken for each other. Our babies hole is very small and to the right of their belly button and as of right now only the small intestines are out. Once the baby is born they will asses the health of the bowels and make a more solid plan from there. But from the research we have done and the conversations we’ve had with our doctors, this is how we think it will go…I know it won’t be exactly like this but it’s nice to have some kind of idea.
-baby will be born naturally or via c-section. We are not sure, they say natural is best but like ANY birth C section is always a possibility.
– baby will be wrapped up to protect exposed organs and taken to NICU for assessment. The health of the bowels is really important. Because they have been floating around in amniotic fluid, they aren’t protected and can often times be damaged. Blockages can occur, swelling, and parts can be dead which means sections may have to be removed. From what I understand, once the bowels are healthy and working, they will go for surgery to have everything put inside.
– once baby is recovered from surgery they will then work on feeding. Because the intestines have been damaged, they often take quite some time to start working properly and this is mainly what will determine the length of time spent in NICU. Some babies are recovered and home within 14 days, others 9 months, and some are in and out of hospital their whole lives.
For us, the scariest part is the unknown. But, I am trying to focus on what we do know and that is the specialists, surgeons, nurses, Lee, and I are going to do everything in our power to get this baby healthy! They say it takes a village to raise a child and for us that is going to be one hell of a village!
So, when you see me posting on Instagram about snap onesies instead of zippers, it’s not because I’m a “rookie mom who will soon learn”, it’s because our baby will likely not get to wear clothes for the first few week maybe even months of their life. If they do, they will have to be buttons so the cords (I’m sure I will learn the medical term for these real soon) can go through. And yes, I am a super keen new mom for packing my hospital bag at 27 weeks, but these babies come notoriously early. In fact my doctor will induce me immediately if he sees something that he isn’t comfortable with. So, although I share a lot on Instagram and with this community, I don’t share everything right away, sometimes I need time to process things and this was one of those things.
I have put off writing this blog post for 15 weeks to be exact. I feel angry and upset that I have to write this. Well, I suppose I don’t have to, but this is our reality and one way to cope will be to connect with others who may have had the same reality as us. Our specialist has informed us that there are on average three Gastro babies born each year in Regina and surrounding area. So, I am hoping that through this community I will find other Gastro baby mama’s and we can connect and support each other. Having a baby diagnosed with a rare birth defect is hard, but not knowing anyone who has gone through the same thing makes it even harder. It can be extremely lonely at the best of times but even harder in the middle of a pandemic. If you or someone you know is going through this, please reach out. We would love to connect with you.
And last, I have come to realize that having a healthy baby is more rare than you might think. SO many things have to go right in order to have a healthy baby… those are the true miracles. Babies who are born with some sort of defect or health setback, those are called warriors.
My sweet Bub, you are only 27 weeks old yet you are already such a fighter. I am so proud of you.
Omg I’m so sorry to hear this but thank you for being so open to share this with your followers. I just said a prayer now for your baby and I will continue to pray for a safe delivery and a healthy baby.
Thanks so much, Kanyin! This means so much!! We appreciate the love and prayers!
Hey Holly!! Thank you for sharing. Your little warrior will be AOK!! Amazing things are done these days on the tiniest of human beings. It is so normal to be fearful . Lots of hugs to you and Lee
Thanks, Karla! I appreciate the message!
Thank you for having the strength to share your story Holly. Your mom is absolutely correct- this sweet baby of yours is so blessed to have you and Lee as their parents. I will be saying some prayers for you and your little family ❤️
Thank you so much, Alison! You reaching out and showing your support means so much to us!
I am sending you, Lee and your warrior baby all of the love, strength and hope. 💜
Thank you so much, Sarah!
proud of u hope you have a safe and healthy baby’!!! 😘😘
Thank you so much, Miley!
So so so proud of you for writing this. This little baby is a warrior because their parents are! You guys are amazing… thank you for sharing your journey with us all. This will touch so many lives, and helps other parents out there struggling!
Thanks, Loreli! I have already connected with some pretty special people so I am so glad I shared it. Thanks for the kind message! Take care!
I can’t imagine the anger and many feelings you are going through. I didn’t have issues with my baby but at birth I was the one who ended up in ICU, no skin to skin with the baby, no nursing, no birth pictures and all that stuff. But as my small family gathered, built our strength and held on we got through it. As I’m sure Lee yourself and your little warrior will. Yourself and Lee seem like a strong team. I wish I had a group to reach out at that time. I hope you can find support through it all. Sending good vibes to your little family and thank you for being so brave to share.
Hi Christine! Thank you so much for your message. Although our births and scenarios are much different they are both hard. Having anything wrong with your baby is stressful so my heart goes out to you as well. I hope you are doing well.
Thanks for the kind words!
Oh my heart goes out to you and Lee. I’ll be thinking of you guys every step of the way. Baby is going to be born to the most perfect parents, and you will get through this one step at a time. I’m one of the girls who (feel creepy knowing lol after you said you didn’t announce) share your due date, and I am waiting to have an ultrasound to check on the size of a cyst on my baby’s brain. After 3 miscarriages, then my perfect daughter, now this babe, I definitely resonate with your sentence about how slightly rare a perfectly healthy baby really is! Thank you for the post xoxo
Oh gosh, do not feel creepy for knowing that! I can’t keep track of what I share and what I don’t anymore haha! Thank you for the support and love all while you fighting your own battle. I want you to know that you are in our thoughts and prayers as well. I know the stress and it is almost unbearable at times. Not that you’re asking for advice or tips but lean on those around you. They want to support you and you need it. I am sorry you are going through this. Life is not fair but try to remember what my mom said “God choose our babies for us because he knew we could handle it” I know it is not easy but having that mindset has helped.
Thank you for sharing and being transparent and upfront about your pregnancy. You are a teacher at heart and are making this a learning moment for all of us. Sharing this story and your other stories not only makes you stronger but all of us stronger. Sending you a virtual hug and letting you know that many of us have you and Lee’s back.
Thank you, Louise for joining and supporting us on this journey. We feel so supported and loved!
I read this as we’re in a hotel room in Vancouver for an appointment at the BC Children’s Hospital tomorrow for our youngest daughter. She was born with a cataract in her right eye, something we never knew anything about until she was born and the delivery doctor “diagnosed” her. She had surgery at 7 weeks, 2 days old to remove the lens from her right eye, she is now 7.5 and wears a contact and glasses and is doing everything other 7.5 year olds do! You know what’s best for your child and the doctors and nurses at children’s hospitals are amazing and will take care of your baby (and you).
Hi Ashley! Thank you for sharing your story. Having a baby with ANY health complications is scary. I have been loving hearing these positive stories. It just reinforces just how resilient babies truly are! I am so happy your baby is doing well!
Stay strong Mama to be. Praying for you and your baby!
I am from Regina and at the tender age of 24 I found out I was pregnant with my boyfriend of just 4 months. At our 10 week ultrasound the tech noticed something “off” and called in reinforcements. We weren’t given any information but we were told to make an appointment with my doctor for the following day and that I’d be coming back for an appointment at 12 weeks.
At our 12 week ultrasound & follow up appointment we were told our child had an omphalocele. Obviously different that gastroschesis, but a mid line defect that was classified as “huge”. We were followed by Dr. Adanlawo on MFM very closely.
Although our journeys aren’t the same- I know how you feel. The doctors & nurses are incredible.
Our son is now two years old. Thriving, sassy and unique!!
And yes, button up alllllll the way.
Hi Brianne! Thank you so much for opening up an sharing your story, I personally know how hard it is. Stories like this give us so much hope- it is exactly what we need to hear right now! Also, how amazing is Dr. Adanlawo… such a precious man. SO smart- we are so lucky to be taken care of by him!
Take care! Much love to you and that warrior of yours!
This must have been such a shock for both of you.
Our biggest fear as parents are that there could be something wrong with our kids and you guys got a whopper out of the gate. Every parent knows how much that little one means to them, even before we meet them. I will be praying for the three of you, even if you’re not into that it won’t hurt ❤
Be gentle with yourself, being a parent is all about learning. No one knows what they are doing anyway. You and Lee will figure it out ❤❤
We definitely did get a whooper right out of the gate! Luckily they found it early so we have had some time to prepare. Thank you so much for the kind and supportive message- it means a lot!
I am keeping all of you in my prayers, Holly. ❤️
Thank you so much, Tricia! Prayers and good vibes are exactly what we need right now.
Thank you for sharing this!
Our best friends in Medicine Hat had the exact same with their first born. Although I can’t imagine the emotions you guys are faced with, I wanted to mention their daughter is a healthy 16 year old now. Sending love and hugs!
Hi Starr! Thanks so much for sending this. We are finding so much comfort in these success stories and hope our little Bub will have a success story like this to share with others one day!
I cried with you as I read this post. Sending you, Lee and your precious baby positive thoughts, strength, prayers and love. You and Lee are so strong, your baby will be so loved and so lucky to have you two as parents.
Thanks so much, Barbara!! We appreciate the strength, thoughts, prayers, and love so much
My friend was born with the same condition and later in life his son had it as well. Much like your scenario they were able to diagnose it in utero as opposed to at birth like my friends parents experienced. His little guy isn’t so little anymore and is sweet as can be. Their second child fortunately didn’t have the same issue but you’d never know there was anything different between the two kids. I’m sorry your first pregnancy hasn’t been easy but know you’re not alone and there are kids out there with the same condition and they are thriving!
Hi Tessa! Thank you for sharing this with me! Hearing others successful stories definitely is something I find comfort in reading.
I had a friend whom follows you reach out and send me your post. My name is Megan, and I am the Canadian Hub Leader for Avery’s Angels Gastroschisis Foundation, a group for the support of Gastroschisis families. We help families navigate pregnancy, birth and life after Gastroschisis whether your child is a survivor, left with medical complexities or passes. I wanted to reach out and let you know we exist and encourage you to check out the website, if you haven’t yet,
You can register for support on the website and will get paired with another family who had a child born with Gastroschisis, most likely myself because you’re from Canada but we have families across the world who Volunteer to support new families and have vast levels of experience.
If you’re not sure and would just like to chat casually you can always email me and I would be happy to chat about whatever questions you may have for someone who has had a child in Regina General born with Gastroschisis.
I hope to hear from you, but if I don’t all the best in your journey. The best advice I can give is to be in the moment and try not to get to far ahead. Gastroschisis is a marathon, not a sprint.
Hi Megan! Thank you so much for taking the time to message me. This is exactly what I was hoping for when I put this post out. I am a part of a few Facebook support groups but would love to chat with Canadians or better yet, someone who has been on the Gastro journey in Regina. Lee is going to email you and we are going to check out the website! Again, thank you… and pass along a special thank you to the friend who shared my post with you. This community has been so amazing I am feeling very lucky to have so many people supporting us.
As a mom, I cried with you reading this. I truly believe Gd does not give you anything you can’t handle. You have an amazing community to support you, so lean in! You will rock being a mama, and this baby is lucky to have you. This story is yours, and you will make it special. ❤
Thank you!!! The more I hear this (God choose us) the more it helps. I really do believe it. I’m not going to lie, sometimes I wonder why, but in due time I will see the lessons it has taught us. Thanks again for your message!
It takes courage to share what you have been able to here. I hope you are able to find the support you need and find comfort in knowing there is so many people who look up to you and Lee going through this situation. I am currently 27 weeks pregnant (due July 26th) and will continue to be thinking of you and your pregnancy. I wish you all the best and praying for a strong little warrior in a few weeks!
Hi Karen! Thank you so much for the thoughtful message. Lucky and I are SO lucky to have the most supportive friends, family, and online community in our corner. Sharing this was not easy but it has been a good reminder that we have so many people in our corner.
Thank you so much! Good luck with your pregnancy! My original due date was July 23rd- I will deliver earlier due to Gastro but we are at the same stage!!!
Good luck with everything!!
Wow, did these words hit hard for me! In 2019 we found out our baby had a extremely rare heart condition at the 20 week ultrasound and soon found out a list of complications that followed. I gave birth and we had to say good bye to our little girl at 23 weeks.
I am so thankful you and Lee were able to find out about your babe early. I know how scary those early days are and the mess that google can make of your mind. I have felt what you’ve felt and know the love you feel for this baby already.
Sending you two all the strength possible through this new journey. Just because your journey may look different doesn’t make it any less special!
Hi Janessa! I remember reading your post about this and my heart broke for you. I am still so sorry that you had to go through that- life is just not fair. Thank you for being vulnerable and sharing your story and for the love and hugs!
Kimberly Hunter Hunter
Your NICU family awaits you. To love you, Lee, and Bub like crazy. We will not only love Bub but protect Bub like our own❤️❤️ Sending love and strength😘
Thank you so much, Kimmmy! I have no doubt in my mind you all will take the best care of us!
Reading your blog brought up a lot of memories and feelings for me, as my son was born with this 27 years ago. It was an emotional and scary journey for sure. My son will be 28 this summer and is strong and healthy. I am here for you if you ever want to talk. ❤
Hi Donna! Wow- I love hearing stories like this! Your son is an inspiration to us. Thank you so much for sharing your story with us!
Oh Holly 💞🥺 my heart and love goes out to you and Lee. Sending prayers to you all to stay strong and hopeful along this journey!
Thank you so much, Erin! Your prayers and love are so appreciated!!
A brave post from a warrior momma! You and Lee have got this because you’ve got each other and this little warrior bub on the way. In your corner and praying along the way! Hang in there… everyone! ♡♡♡
Thanks so much, Kara! We appreciate the prayers and good vibes!
Holly and Lee,
I am sorry that your sweet baby and yourselves are facing this serious health challenge. Yes, healthy babies are not as common as society projects. Thank you for sharing this extremely personal news about your baby. Sharing your story will help many families facing serious health challenges. I hope that you will find the support you need within your community. Holly, your mom’s words are so very wise and true. I’ll be praying for your baby’s health and recovery. As well, for your strength and perseverance through the duration of the pregnancy and in supporting and caring for your baby in their recovery.
Thank you so much, Sheila! Your words of encouragement and support mean so much to us!
Wow what a scary thing to deal with as first time parents. I am praying for you and your sweet baby. You are right, your baby is a warrior. And so are you and Lee. ❤️ Sending you my love and prayers.
Thanks so much, Lenae! Your love and prayers are appreciated!
Holly, you and Lee got this. You will be supported by great medical staff and by the love of your family. You are a learner and you will adapt with great speed.
I’m not sure if you have heard of Jen Strarycki, her son Nate was born with the same condition, he is an incredible kid. Jen has been very vocal with their journey and could be a great support system for you.
Sending you hope, and love
Thank you so much for your sweet and thoughtful comment. Yes, quite a few people have told us about Jen’s family and we are following. Thank you so much!
Hi Holly (and Lee)
Reading this, I had tears streaming down my face. Not because I feel sorry for you, but because I know that baby is SO lucky to have you and Lee as parents.
While I can’t relate to your specific situation, I can relate to a stressful pregnancy where you are told something is wrong with your baby, and you have to sit on pins and needles and hold your breath before every appointment or ultrasound. Our youngest, while in utero, was diagnosed with Hydrocephalus, a heart arrhythmia, and he had a cyst on his brain that we were told was a marker for him possibly having Trisomy 18 (meaning he wouldn’t survive).
The stress and anxiety can be all consuming. But there is hope. Always. Babies are strong and resilient. And they are actually REALLY good at fixing themselves as much as possible before they come earthside.
Our story had a happy ending, and I have NO DOUBT that your guys’ story will as well. ❤
Oh gosh… and now I have tears streaming down my face!!! Thank you for sharing this with me. Stories with happy endings are bringing us so much hope right now, so thank you so much for sharing this with us.
Thank you for your bravery in sharing this deeply personal part of your pregnancy and birth story. I was one of the lucky ones with a healthy birth and baby however, now at 5 we are facing some diagnosis’s that will mean struggles for the rest of his life. It’s tough and the sadness and grief are very real but we are the perfect parents for him as you and Lee will be for your little one. Your mom had it so right when she said that God chooses our babies for us; he doesn’t make mistakes.
Parenthood… seriously the toughest role on Earth. One that is full of ups and downs. I can’t imagine the stress your son’s diagnoses must have brought on. I am so sorry you are having to go through this. You’re right though, God choose you to be his parents because you could handle it. Sending love and good vibes your way.
So many emotions right now, and honestly, when you have to go through it, you just take it day by day. I was on bed rest for 3 weeks, and had my daughter via c-section. She was born at 29 weeks 5 days, 1lb14oz. I wasn’t able to hold her right away as she was taken to the NICU. She was so tiny and fragile, and it was days before we could hold her. She was in the hospital for 2 months and it was an amazing experience, highs and lows, but always amazing care by the nurses and doctors. You and baby are in good hands, and I pray that this will be an amazing experience for you both 💕
Karen! What a journey those two months must have been for you all. You sound so positive and I love that! Thanks for sharing this with me!
So sorry you guys have to go through this. I feel every one of those emotions you are feeling deep in my core. My son was born with a rare condition called Polymicrogyria (his right frontal lobe of his brain did not develop normally) which resulted in Cerebral Palsy causing him left side weakness and very limited use of his left hand. Then at 2.5 he was diagnosed with Leukaemia. We spent 8 months at the Alberta Children’s hospital and then he had another 2.5 years of maintenance treatment. He is the definition of warrior and amazes us everyday. He is now a healthy, strong, resilient 10 year old who overcomes his challenges everyday. We have met many other warrior parents through our time at Children’s and the Ronald McDonald House who have all different kinds of warrior kids and I can tell you that these kids are the most amazing, inspirational, brave children you will ever meet and the parents of these children are the best of the best. I know our stories are different but wanted to share our story of hope with you and tell you yes things will be hard but you will get through it. Reach out if you ever need support. Thoughts and prayers from Medicine Hat, Alberta!
Wow. Sarah, I am blown away by your families story. I cannot imagine all your family has gone through. You are so positive and that is inspiring to me. I am so happy to read that he is now a healthy and strong 10 year old. Thank you so much for sharing your story and for giving us so much hope. These are the exact stories we need to keep in mind as we enter this season of our life.
Wow! What a journey you have been on already. Thanks for sharing. And your are right – sometimes it’s so easy for us to sit on the other side of the screen and get all judgey – when in reality, everyone is going through something and most times we don’t know!! I used to hate snap up onesies too and could never understand why people would buy them – until the only way we could put clothes on our newborn was with a snap onesies to get around all the monitor wires – now they make perfect sense! My now two year old was born with a rare bowel disease. He spent a short time in the NICU after he was born and had surgery at 1 month old to have part of his large intestine removed. He is still struggling with on going issues and has been in and out of the hospital quite a few times since then. All that to say, nothing will prepare you for what all is to come…but know that you are strong and you can do hard things – you got this Mama! Your first few days (+) with babe may be different than ‘normal’…but, know that those moments will be sacred and they will change you and be with you forever. There was a motto that our NICU had that has stuck with me ‘…there is no foot too small to leave an imprint on this world…’ These warrior babes – they are world changers right from beginning. It’s inspiring how much fight and resiliency they already have in their tiny imperfect bodies. I know the diagnosis are different for our little ones…but I can relate to a lot of what you touched on in your blog post. So, if you ever feel like you need to chat with someone who ‘gets it’ … feel free to reach out. Wishing you and Lee and your sweet babe all the best in the coming weeks. XO
Oh my goodness, thank you so much!!! This comment brought me to tears. “there is no foot too small to leave an imprint on this world” wow. What beautiful words to hold onto. Thank you for sharing. I am sending you strength and love as you navigate your journey with your little one.
16 years ago April 10 my sister in law birthed her second child, first and only daughter, with a condition called “hypoplasty right heart syndrome” I drove her to her dance class tonight. We cried and prayed and loved from the heartbreaking diagnoses to her checkups now. My first was born a month early and I wasn’t prepared… those first photos aren’t anything I want her to see. I was in shock. I think lots of births don’t look how you think… you will be an amazing momma no matter what❤️
Hi Heather! It sounds like your sister in law had a very similar birth to mine and same thing! You would never know- healthy, happy and spicy as ever!! Thank God for science and doctors!!
I’m sorry you’re dealing with this stress but you’ll all get through, one day at a time, maybe some days one hour at a time. But you’ll make it through. You’re absolutely right, a perfectly healthy baby is rare. Just remember any person could be born “healthy” but all it takes is one cell turn over to go wrong and that perfectly healthy person all of a sudden has a health issue. I think what is more rare now is a perfectly healthy person. All the best in the coming weeks!
Thanks so much for this thoughtful comment, Joanne! You’re right. All it takes is one cell to turn over not quite the way it is supposed to. Thankfully we have amazing doctors and science to help us through this journey!
Sending love and prayers to you, Lee and your sweet babe. They are extremely lucky to have both of you as their parents!
Thanks so much, Allyson! Back at ya with love and prayers!!
I am not a mother but as I read this it brought tears to my eyes. As a 35 year old woman who hopes to bring a child into this world (hopefully within the next year) I have so many fears about pregnancy and what could go wrong or even if I will be able to have a child. Reading your story has gave me hope because even while you are facing hard realities you have so much love and hope for your baby. I can tell that you both will be amazing parents and you will be able to get through whatever challenges arise because you already love this baby so much. I will keep you in my thoughts and I look forward to following your journey. I appreciate you sharing such a personal experience with all of us.
Erin! Your sweet, kind, and thoughtful words made me tear up! Thank you SO much! I had the same fears about trying to get pregnant, I think we all do as we enter our 30’s and think about getting pregnant. You are not alone in that but my advice, although I’m sure you don’t need any is to stay positive and calm. Someone with higher power always has a plan for us even if it’s not exactly what we imagined. Lots of love right back to you!
A friend linked me here because she was one of our nurses during our 8 month stay in the hospital 7 years ago. To see him today, you’d never even know our little dragon had ever had issues – I think his allergies/eczema/asthma and ADHD are all linked to the missing parts of his intestines (he was a closed gastroschisis), but those aren’t uncommon these days either. My insta is @primalwitch if you want to scroll waaaaaaaaaay back and see his story.
Please feel free to reach out with any questions. It wasn’t an easy journey, but it’s doable
Thanks so much, Mandy! I have never heard of closed Gastro- I am going to look into this! Thanks for offering your support, we appreciate it so much!
Sending you, Lee and baby all the love and strength! I truly admire your strength and courage and want to thank you for sharing your story. I’m sorry that God had other plans for your pregnancy and baby, but I have to imagine that he chooses the strong ones and you will get through this together. I hope you find a support committee to lean on. You’ve got this! 🖤
Thanks so much, Casey! I appreciate this so much. It is tough but as time goes on I am realizing this is just a small bump in our journey!
Long time reader and NICU mama here..
this baby is so lucky to have strong parents ready to cheer them on. Show yourself lots of grace during this time. You are so strong!
Thanks so much, Cayley!!! I am so excited to be on this journey and to bring you all along! Thanks for all the support over the years!!
Thank you so much for sharing this part of your journey with us. I still struggle to talk about my own and am so grateful for your vulnerability. It definitely lets other moms know they are not alone in their own scary and overwhelming moments.
In 2015 my son was born with a massive brain bleed. The damage was so extensive and it was such a rare occurrence that no one (including the drs) knew what the outcome would be. I too went through the process of blaming myself and the “imperfect” things I may have done while I was pregnant. Until I realized it wasn’t doing any of us any good and that there was nothing I could have done to prevent this. It will be exactly 6yrs (tomorrow) and if you met my son you would never know. Hes beaten all the odds. We never ever gave up hope and in turn I believe he never gave up either. Miracles happen everyday mama <3. Sending you and Lee (and babe) lots of love and strength in whatever comes your way.
Okay, now I am crying!!! What an incredible journey for your family! A story you all should be so proud of! Thank you for sharing this with us, these are the exact type of stories we need to hear!!
Hello Holly and Lee,
Firstly, I am sending so much love and positivity your way! Thank you for your bravery and courage sharing your story. Secondly, my family has a very rare hereditary genetic syndrome (Beckwith-Wiedemann syndrome) which can cause a whole host of scary things ( wouldn’t recommend googling) the most basic description is baby is born with organs too large for their body and has a high risk of childhood cancers. I was born with my tongue much too large for my mouth, I grew into it, and had to be closely monitored all throughout my childhood. The odds weren’t in my favour as a baby or child, but I outgrew my diagnosis. I’m a fellow teacher and currently working on genetic testing to sort out the best plan for me to start my family. I saw the countless doctors, specialists and sterile rooms growing up and I’m doing well! I’m not a Mamma yet so I can’t relate, but I can sympathize and wanted you to know lots of those rushed to NICU babies grow to do wonderful things! Your little bub is surrounded by so much love and kindness, I feel those are the two most important ingredients in life.
PS – sorry for the long comment COVID has me seeking connections wherever I can!
Oh Taylor! Thank you so much for this comment and for being vulnerable and sharing your story! What a journey you have been on- a true warrior coming through on the other side with a positive mindset! Thank you for sharing your story- these are the stories we love to hear!
Good luck with everything as you plan your entry into motherhood, you’re already looking out for your little Bub by doing everything you can to ensure the healthiest baby possible.
Sending lots of love, and good vibes your way!
Motherhood coming naturally to you. Praying for you, Lee and bub. It is well. ♥️♥️♥️
Thanks so much, Meg! We appreciate the prayers!
Writing from Edmonton Alberta, I am 24 weeks pregnant with a little girl that has gastroschisis. Came across your blog, and thought I’d shoot a message your way. The same feelings here, and some days are full of hope and some days are just freaking sad… I’m doing better, like you said we found out early so we have time to process this. But in my situation I was planning a homebirth. So for some reason it all makes it worse, I wanted nothing to do with hospitals and docs etc…. And now I literally have to “trust” them somehow. Which is not in my nature, it’s like asking me to do things against my wish or my beliefs, and it’s really hard to let your guard down. I tell myself I do this for my baby, it’s not for me, my baby needs help, I don’t. And that helps.
-How is your baby now?
– How did feeding work out for you and him?
-If you have any tips or encouragements anything really… please email me,
Thank you so much for sharing your story, I was desperate to find something like this, I only have the doctors to talk to about this and they don’t feel very human tbh…. So knowing you had to go through this is like an anchor of information in this unknown time for us.
Take care 🙂
Emailed you, mama!