Owen was born on April 21, 2011. At 24 weeks, 5 days gestation, he was more than 15 weeks early and was the average weight; 1 pound 12 oz (800 grams). At first, it seemed Owen was going to shine his way through the NICU. He required very little respiratory support and there was even talk of extubating him in the first few days.
The honeymoon did not last very long. At 8 days old, Owen had his first surgery when he had a PDA ligation. Then at one month old, he began getting very sick. He was suddenly needing a lot of breathing support and getting very bloated. On May 24, Owen had emergency surgery because the doctors suspected perforated bowels. They were correct. His jejunum (upper portion of the small intestine) was filled with micro perforations due to an attack by a common cold virus called CMV. We almost lost Owen that night, but that’s when we started to see just how much he would live up to the meaning of his name, “young warrior”.
The damage to his intestines resulted in a domino effect of several complications for Owen. He required two more surgeries related to the perforated intestines, one to close his wound and then another reattached his intestines that had been cut into 4 pieces. While his intestines healed, he was not able to get nutrition from milk, so was nourished through IV feedings for most of the first 3.5 months of his life. The nutrition is not as adequate as milk and so Owen became malnourished leading to brittle bones and rickets – as a result Owen suffered multiple rib fractures and 5 total fractures in his legs and arms These fractures were not due to abuse, but due to how weak his bones were. He also became very jaundice from the IV nutrition which temporarily turned his skin and eyes yellow and damaged his liver.
Once Owen finally was able to start eating, he developed very severe reflux that caused further damage to his lungs. He ultimately ended up needing another surgery to place a g-tube and get a Nissen which stops the body from being able to reflux.
Another complication that Owen sustained is brain damage on both sides of his brain. As of today, it’s still too early to know what, if any, long-term issues that Owen will have from this damage, but it puts him at very high risk for cerebral palsy.
After 181 days, Owen was discharged from the NICU. He was 2 days shy of his 6 month birthday and 2 1/2 months past his due date. He came home on oxygen and with a g-tube for feeding and was extremely developmentally delayed.
In the next 6 months at home, Owen has had two more surgeries and 3 additional hospitalizations for respiratory illnesses. In all, he’s had 223 hospitalized days before his first birthday. That 3rd respiratory illness resulted in him spending his first birthday and 224th (and still counting) day hospitalized in the Pediatric Intensive Care Unit. At one year old, he still requires oxygen to support his breathing and he only orally eats a couple of tablespoons of baby food per day, the rest of his nutrition comes from his g-tube. He can roll from side to side and is just starting to bear weight on his arms and legs for a second or two at a time, he’s making a ton of progress, but is still very developmentally delayed.
Beyond his amazing feats of strength in his first year, Owen’s best feature is definitely his personality. Somehow, he’s a smiley, happy little man who is determined and hard-working. He has a bright future and, I know, will continue to amaze in the years to come.
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- The large patch is because Owen was too swollen to close after his first intestine surgery – his lungs could not expand and contract due to all the swelling. They sewed a large patch in for two weeks to give him time to recover.
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- Owen was on an oscilatting ventilator and could not be held for four weeks following his intestines perforating. Due to surgeries we had two more 1-2 week stretches of not being able to hold Owen.
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- The plan was to extubate Owen the next day after getting a new PICC line, however, Owen decided to give Kyle a Father’s Day present to remember and pulled his own tube when Kyle and Nurse Betsy were putting him back after a hold
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- They only stuck for a week that first time before CMV came back and Owen had to go back on the ventilator but it was a wonderful week of finally seeing how cute he is.
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- You can see the incision for Owen’s surgery really well in this picture.
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- The color is not off on this picture, Owen’s skin really was this yellow/orange. He developed severe jaundice due to colostasis of the liver due to damage from too much time on TPN (IV nutrition).
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- This jaundice is different than newborn jaundice and cannot be fixed by bilirubin lights. Owen’s intestine damage was very high up in the bowel so he could not absorb nutrients from milk – therefore he had to get all of his nutrition from TPN for the first 3.5 months of his life and this damaged his liver.
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- You can really see the jaundice well in this picture. Because of the damage to his liver, Owen’s intestines were reattached only 6 weeks after they perforated. Most kids wait months between surgeries but Owen was at risk of going into liver failure if he didn’t start getting proper nutrition. The surgery to reattach was on July 11 and he didn’t start eating food until around this time.
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- First try at the bottle
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- He wasn’t really a fan on the first go
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- The second bath went much better
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- I think Owen’s a little loopy in this picture, it’s right around the time we found that he had several broken bones due to osteopenia and rickets (from too much time on TPN). Once they understood why he was upset, he was given pain relief.
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- Most Nissen surgeries are done via lathroscopic surgery, but Owen’s damaged liver was too enlarged to be able to get at the stomach without a full incision. This was surgery number 5 in 5 months.
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- Owen was 2 days from his 6 month birthday
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- To prep Owen’s meds for a day, I put them out in alphabetical order and then put out the right number of syringes for each medicine. I have buckets for each of the medicine administration times so I know exactly what he needs and when.
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- In mid September we were told it may be Thanksgiving or Christmas before Owen is well enough to come home. He had other plans.
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- Owen started smiling right around this time and he hasn’t really stopped since. He’s a very happy baby that loves to laugh.
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- Back in the hospital for his first, of several, respiratory illness that required hospital stays that first cold and flu season.
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- Owen has quite the proof if anyone wonders if he’s tough enough
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- He was pretty sick so they weren’t letting him eat, but the nurse let us give him a little lick of the frosting from his Vegan, Gluten Free cupcakes.
Thank you for continuing to share your story. I had my twin boys at 24 weeks and 4 days on November 29, 2011. Evan weighed 1 lb. 7 oz. and Blake weighed 1 lb. 9 oz. Sadly, Blake passed after 10 days. Evan had many ups and downs with his lungs and several infections, including a serious case of CMV. Evan finally came home after 125 days in the NICU on April 2, 2012. It’s so nice to know that the emotions I’m experiencing after he’s been home are normal for micro preemie moms like us. I struggle with wanting to be “normal” again and try to learn that we have a “new normal” each and every day.
By the way, Evan also means “young warrior.” How interesting!!
Lara, Thank you for posting. I took a peak at your CB site – Evan is very handsome! I’m sorry that Blake will not be able to grow along side him. This Preemie world is not fair. We parents have to stick together and keep talking about our stories to keep alive the memories of babies, like Blake, who do not get to tell their story and for babies like Evan and Owen who have to navigate the “normal” world with such a unique start. Thanks for following and I look forward to checking in on Evan, another Young Warrior, too.
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Thank you for sharing your story. I too had a premie, and man it is such a crazy time. My daughter is home now, but spend three months in a full body cast and a helmet once she was discharged. I got so tired of hearing the whole I am sooo sorry speech from people and getting stared at everywhere we went!
I bet that was difficult for people to understand, Jennifer. It’s hard enough for you to deal with the needs of a child in a body cast and then the stares on top of it, don’t help. I’m glad to hear that your daughter is home and hope that she’s doing well.
I just read your story. Owen is an amazing little boy. His name fits him well! I have a 24+5 preemie born last Jan.24. We were in the NICU 151 days. She had resp.trouble and just got off home 02 a month ago. She had medical NEC no surgery required. Her big issue besides the BPD was anemia of prematurity requiring 16 transfusions. She also had ROP and had laser surgery in both eyes. I’m thankful she is home and doing well.she is on track physically and cognitively as far as we know.She was 1#7 oz. Now at almost 1 year only 10#7 oz. SLOW growing.Blessings to your family!
Thank you for sharing your daughter’s story, Michelle. She sounds like quite the fighter! I’m glad to hear she’s doing well today.
Wow, your story is inspiring and amazing. Thanks for sharing it. We too have an Owen! In Feb. of 2010, he was born at 29 weeks and lived up to the meaning of his name too. Today, he’s a healthy, happy almost 3 year old, but we will never take for granted how lucky we were to have St. Paul Children’s and the miraculous works of the MOD!
Thank you for visiting, Laurie. I peaked at your blog and was thrilled to see your Owen is a red head too. They even have the same Christmas PJs.
What an inspiring story. You have a beautiful, strong family. PHS is honored to be a part, however large or small, of your story. Thank you for all you do to care for your family day in and day out. You are amazing.
Thanks for stopping by, Dana. We love PHS. The service has always been great and when we struggled with insurance dollars running out, PHS is who stepped up to help us. It’s clear PHS thinks first about its special customers before the immediate benefits of a sale. No one’s first choice is to need a DME provider, but if I’m going to need it, I want PHS.
We’re always thrilled to hear that. We so work hard everyday to ensure that families can focus on #1, which is the safety and health of their child. Glad to hear you’ve had a great experience thus far. It’s really all about seeing these kids thrive at home, and it sure seems like Owen is the perfect picture of that goal.
Thank you for sharing your amazing story. Micro preemies are so strong. My 27 weeks will be 5 months actual tomorrow. We were very fortunate despite 2 episodes of NEC (without perferation) to only do 72 days in the NICU. Amelia has shown us what it means to be strong and continues to show us everyday.
Hi Holly, Thank you for sharing your story with Amelia. She sounds like an amazing little girl and I’m so happy to hear that she has been a preemie rock star.
Tatum,
Thank you for sharing your story so candidly. I love your blog and have been following for some time – in fact, we feature it on our non-profit website as a favorite resource.
My premature son also had NEC requiring surgery with TPN induced liver failure. When I saw your post today and was perusing your NICU pictures showing Owen’s jaundice, I wondered if I could ask for your impressions about any longer term effects of the liver failure?
My son is 2.5 years old now and for the past 6 months we have noticed an intention tremor in his hands. I was doing some reading and came across some information about brain damage caused by high bilirubin levels in infancy that could cause similar symptoms and more. We saw his Neurologist again about the tremors and he also noted some increased muscle tone (although his tone has previously been normal on prior neuro exams). He is having an MRI tomorrow (which I’m very nervous about because it means my sleep apnea baby will be sedated) to check for brain damage/PVL. Have you had any similar issues with Owen? I’ve read about all the bad neurological outcomes for babies with surgical NEC, and I find it terrifying. The worst part is the waiting around for months and years not knowing what will be.
It’s terrible how these little setbacks bring all the emotions and fears flooding back. Your post today about anniversaries really hit close to home. Thanks again for sharing your family’s story so openly!
Hi Tamara,
Good luck with the MRI tomorrow. I understand your nervousness! Owen has not had any tremors. He does have PVL, but that was discovered at the same time as his bilirubin being high and just after he was very sick and septic from his bowel perforating, so it’s hard to say what the root cause of his PVL is. My personal gut is his PVL was a result of CMV, the virus that caused his bowel issues and sepsis, but no one really know for sure.
I’m sorry to hear that you’re starting to see issues now. I hope you get answers. I hate setbacks too. Hugs!
PS – thanks for sharing my blog on your site.
As a NICU Nurse I never tire of hearing the stories of preemies and their families; and I’ve been in the NICU for almost 20 years now. There are no words for the respect I have for all you (and all the other parents that have shared their story here too) have done to nurture your little ones. Owen has the best smile!! Your pics are amazing.
Thanks for sharing your story. Nurse Kathi
Aww I have so many of the same pictures of hannah!!!
She to had to have bowel surgery and be fed through an iv making her jaundice.. as weel as all the diffrent breathing help pictures and soothers ♥
So glade you found my blog