According to the March of Dimes, 1 in 9 babies is born Premature. Being born Premature is not simply just being born early. It is often accompanied by being very small and very sick. In honor of Premature Birth Awareness Month, I wanted to talk to you about a couple of serious conditions that are very common with a Premature Birth. Theses conditions are very scary, can be life-threatening, and can require surgery. Unfortunately, we have had experience with them when my twin boys were in the hospital in the NICU (Neonatal Intensive Care Unit.)
As most of you know, my Identical Twins were born at 25 weeks, 5 days, which is almost 15 weeks early. My boys were the smallest and sickest in the hospital at the time they were born.
About a week after he was born, they found a heart murmur in my bigger guy. I refer to him as my bigger guy because he was 2lbs 2oz at birth, a whole whopping 11oz bigger than his brother.
The heart murmur was caused by his PDA not closing at birth. PDA stands for Patent Ductus Arteriosus and according to the National Heart, Lung, and Blood Institute,
Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.
So, in order to get him healthy and able to eat, a heart surgeon had to come in and close his PDA. Surgery on a baby is scary, but surgery on my 2lb, 25 weeker baby was absolutely terrifying.
I remember the nurse telling us to be there at a certain time. Did we want to baptize him first just in case? He didn’t even have a name at that point. After a brief discussion, me and my husband finalized their names. They would do the surgery right at his bedside, and it would actually take longer to set up and sterilize the area than the surgery. Somehow, this did not make me feel any better.
The doctor came from another hospital, and was “the best” at this procedure. He came and spoke to me, my husband, and my mom, saying he would do his best, but because he was so small, he made no guarantees. We then sat in the waiting room in silence. I still remember praying as the tears streamed down my cheeks.
After I couldn’t take sitting any longer, I paced the hallways, trying to get a glimpse into the room where the surgery was taking place. I wasn’t sure if it was better or worse to be able to see what was going on. I could see some of the people who had set up the room, and then I saw the most beautiful thing. One of the guys gave me a thumbs up. I wasn’t exactly sure, but I guessed this meant the surgery went well. I just felt relief.
The surgery did go well, and now my big guy has a cool looking scar to show how strong he was/is. After that surgery, he still had to work on breathing on his own, gaining weight, and getting the blood vessels in his eyes to vascularize (I’m still not sure what that means,) but he did soooooo much better. That open PDA really made his little body work hard, and with everything working normally, he was on the road to getting home.
As I mentioned, there is another, even more deadly problem that many preemies experience. My little guy did not have the PDA problem, thank goodness, but he had the other nightmare of a problem, NEC, or Necrotizing Enterocoloitis.
According to kidshealth.org,
Necrotizing” means the death of tissue, “entero” refers to the small intestine, “colo” to the large intestine, and “itis” means inflammation…A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel.
My poor baby’s tummy was so dark purple/black. The doctor told me that this problem was solved in 1 of 3 ways. A third of babies with NEC will respond to antibiotics, while another third need the area cleaned out and drained with minor surgery. The last third need a more invasive surgery, where parts of the intestines are removed.
My little guy was too little for the third kind of surgery, so we prayed that antibiotics would work. When that didn’t seem to be happening, they got another specialist to come and perform the drain. Again, they did it right at his bedside and had him sedated. If this didn’t work, they would have to hope it would at least buy him time to get bigger until they could perform the surgery…at another, bigger hospital. Luckily, we never had to get to that point because the drain worked.
My little guy had a bit of a rougher road in the NICU. He did not gain weight quite as easily, and had a hard time getting off the ventilator. They had to give him some steroids, which come with all sorts of lovely side effects, and they prepared us that he wouldn’t be coming home around the same time as his brother.
He also had ROP, as I talked about in another POST. The laser surgery he had would cause him to lose his peripheral vision, but it was either that or blindness. Although it seemed like bad news on top of bad news at the time, whatever they gave him to prepare for the surgery seemed to help him finally get off the ventilator. I think he was so mad he had to be intubated again, he decided no more tubes for me! Seriously though, he really was mad after the surgery. The nurse tried to give him a pacifier and he just screamed and threw it across his incubator. After they were able to extubate him, he figured out this breathing thing that we all take for granted, and was on the road home. He only ended up staying in the NICU for an extra day and a half!
So, on August 3rd of 2012, I had my whole family back together. It still sometimes seems unreal to me. From the perinatologist telling us my little guy would never be big enough to be viable, to the neonatologist explaining the percentages of how many babies actually make it home if they are born that early (I don’t remember exactly…I think I was blocking it out) to now having two healthy 3-year-old beautiful boys. I just have to pinch myself most days. It also helps this sleep deprived momma keep awake. Kidding. No, I’m not.
Please share this post to spread awareness on Premature Birth. Don’t forget to post your Purple on my Facebook Page from now until November 15th and you will be featured in my November 17th Blog Post! #PurpleforPreemies
Wow. You guys had some mega scares. Charis had a PDA too, but thankfully it did not require surgery! And NEC…. terrifying!
Yes! Luckily, at the time, I didn’t know as much as I do now.
Mary L. Midolo says
Great post, My family had a similar story- twin grandsons born at 28 wks. The biggest 2.7 had BPD and the little guy had surgical NEC. Surgery at 4 days old. Very scary but we were among the luckiest and he is doing well now at 4 yrs old. His experience is why our family started the Morgan Leary Vaughan Fund dedicated to Necrotizing Enterocolitis and it’s treatment, cure and ultimately prevention.
That is awesome! Thank you for sharing your Fund. I will definitely look it up. I’d be happy to do a blog post on your story too.
Sounds excellent. It you want to check us out our website is http://www.morgansfund.org and if you visit check out our educational initiative under the podcast tab. These are conversations with NEC experts and researchers about NEC, its treatment and research for the future.
So glad that your little boys are doing well now. Jaxon has had issues and we’re off for an ECG next week but hopefully he’s going to grow out the issues.
Thank you! I hope Jaxon is OK.
Wow so scary… I cant even imagine what those 93 days were like. So glad to see they are happy & healthy now!
Beautiful babies and family. Thanks so much for sharing your story
Thank you for reading.
Man, your sweet little ones went through so much so early! Just hearing about that baby surgery makes me break out in a sweat! Thank God they are okay; beautiful family!
Thank you Natasha!
Homemade Experience says
Wow, what a story and stressful time. Your little ones are absolutely precious.
Thank you so much for sharing such and emotional, stressful time. Your boys are darling and they are clearly very strong-they’ve even made their mama stronger!
Rachel @ Canon says
I agree with previous comments! What a story. Thank God your boys made it through and are fine now.
Lauren White says
Oh my goodness. You brave mama you. God bless you and your beautiful babies that they are now healthy three year olds! Having such medical scares right from the beginning must have been terrifying but you wrote about it with such grace. I hope your sweet babies continue to stay healthy! 🙂
Thank you Lauren!
I can’t even imagine the surgeries/procedures. My girl had the PDA, but it was small and they just opted to monitor until it closed on it’s own. If it hadn’t closed completely by a year she would have needed surgery. It closed entirely at 9 months. She also had the NEC but the antibiotics worked. Even that was terrifying, knowing what could happen, I can’t imagine what it would’ve been like if we had to reach the next step. I’m so glad your babies are well, Shann. Happy NICUversary!
The Trophy WifeStyle says
Omg!!!! So glad your little one is going great now! I will have to check out this fund :):)
Jenna Cerrati says
Wow our stories are similar! My boys were born at 26 weeks due to TTTS, both were less than 2 lbs. My “bigger” guy had to have PDA surgery as well and he also had NEC but luckily they caught it early and antibiotics worked for him. My little guy had ROP and had to have laser surgery but his PDA closed with meds. He was on the vent for about a month and they didn’t think he would make it because his lungs we so underdeveloped. Mine were in the hospital for 134 days but came home together and we had oxygen at home for months. It was all so crazy but they are now doing great and just turned 6 yesterday!
Wow! We do have similar stories! So happy to hear your boys are doing well!
Ugh, this story breaks my heart. But I’m SO happy they’re doing well three years later. They’re precious!
And Possibly Dinosaurs
Gosh Shann – I don’t think I’ve ever read this complete story before. It gave me chills. I just can’t even imagine what you went through at that time. You are one strong mama with amazingly strong boys!
Thank you so much Tiffany. I really appreciate you taking the time to read their story. 🙂
Your boys are absolutely precious. I can’t imagine how hard that must have been, but this post is great for raising awareness. Thank you for sharing.
I’m glad things worked out!
Becky @ Disney in your Day says
Thank you for sharing all of your knowledge and helping to spread the word. I definitely teared up a little reading this and what you went through, but I’m so glad you have a happy and healthy family now!
Thank you so much, Becky. I really appreciate that.
Such a beautiful story and a beautiful family!
Thank you 🙂
These are sweet stories and your little guys are so strong!
Wow. So scary. I’m thankful that everyone was okay after all of that. God most definitely had His hand on them, they must have a very big purpose in life! Praising God now for the health
Irina Vakulchik says
I cried reading your post. Every mother prays for a healthy baby. My 10 year old has VSD (ventricular septal defect) she has a hole in her heart and she might have to have surgery one day. I am so scared for that to happen. We had surgery planned but the surgeon told us it was best to wait. I remember not being able to eat or sleep leading up to that appointment. I can only imagine what you had to go through. Thank you for sharing your story. May God bless your family. Hugs and kisses from one mommy(me) to the other (you)…..
Awe. Thank you so much. I really appreciate your kind words. I pray that your daughter does not have to have surgery, but if she does that everything will be fine.
Divine Elements of Design says
Thank you so much for sharing your experience and giving us a peek into your life. My niece has a 9 month old and expecting twins next year. I will share this post with her.
If she ever has any questions, please have her email me at firstname.lastname@example.org 🙂
Omg, Shann you are such a strong mama! You and your boys went through so much, but you’ve come so far. Thank you for sharing your story.
My Urban Family says
So scary, but I appreciate you sharing your story! And I’m so happy that you are able to share it with good news at the end. 🙂
I’m so sorry your little sons had to go through that! How Scary! I went into labor at 20 weeks and each week they would come in and tell me all of the challenges he would have if he was born. It was so scary! Thank you for bringing awareness.
I was born at exactly 37 weeks, so not super-premature but a bit early nonetheless. My mom had preeclampsia and I was losing weight in utero. Thankfully my only long-problem was a bit of dyslexia, which may be familial or may be due to the intrauterine growth retardation.
So glad your boys are thriving.
Stefanie (@LexieLooDylan2) says
That had to be so scary! My son was born at 35 weeks, but was perfectly fine. We’ve had a few babies in our family/group of friends who were born at 25 weeks, though. Glad your sweet boys are doing so well now! Liam had a tiny PDA at birth. It closed completely by the time he was 6 months old. I was so scared he would need heart surgery!
Yes. Hear the words Heart and surgery on your baby is just not something you ever want to hear. I’m glad Liam didn’t need it 🙂
I’m so sorry you went through this, how terrifying! I worry about having a premie but my daughter came late and I’m hoping the same goes for the one we are expecting now. How amazing is it what modern medicine has accomplished?
Modern medicine and the NICU nurses are truly amazing 🙂
Anamika Ojha says
Hats of to you Shann for creating awareness about Premature birth and boosting the morale of those families who are going through this pain. Your post would be an incredible support to them. Thanks for sharing. 🙂
Thank you so much Anamika!
Tayler Morrell says
Wow! God has definitely looked out for your boys in their trials!
Clare Speer says
Wow what a story, Shann! Your baby boys were/are miracles! Thanks for this great information! I knew nothing about these conditions.
Thank you for reading Clare 🙂
God bless you and your family. Thanks so much for sharing your story… how scary, but what a blessing in the long run. Cheers!
Emily, Our house now a home says
Wow, you and your babies are so strong! I am so happy they are OK now.
Stephanie Cox says
I will tell you that I truly believe God knows what he is doing when he blesses premature babies with their Momma. You are so strong to handle such serious conditions when all you truly want to do is love your babies the “normal” way. I am so glad to hear that they are thriving!
Thank you so much.
Corina Ramos (@NotNowMomsBusy) says
Your little ones are a couple tough cookies. I’m sure surgery on your baby must have had you on your wits end…I know I would have been a mess. But it’s so good to see they’re doing great now.
My cousin was a preemie. I can’t remember how small he was because it was a long time ago and I was a kid myself but I remember my grandmother holding him in the palm of her hands.
Our family has supported March of Dimes for the longest time now and glad to do it too :).
Thank you for sharing your story with us Shann. Have a great day and weekend!
So glad to hear that, Cori. Thank you!
Summer @ Coffee With Summer says
I can’t even imagine…thank you for sharing!
Thank you for sharing your story…it is so brave and I love how you have included so many facts that will help others too.