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Rosie’s NEC Story [video]

Author
Josef Rappaport, DPT, Physical Therapist
December 9, 2021

Labor with no complications is traumatic already, so it must be all the more difficult for parents of babies born prematurely, especially those born with complications such as Necrotizing Enterocolitis (NEC)

Jasmine’s daughter Rosie was born prematurely at 24 weeks through an emergency C-section. A few moments after labor Rosie was lifeless, but the doctors and nurses revived her and she was given another shot at life. A few days after birth Rosie was diagnosed with NEC.

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Rosie was born weighing 1lb 12oz, but was a fighter. With her determination and a great appetite, she gained weight quickly and passed all of her milestones.

Here is Jasmine recounting her entire story to Select Justice and the world (full text below):

It’s important that we share stories like Rosie’s with the world so that parents can be educated and prepared as much as possible before birth for any event that may arise in their future.

If you would like to share your NEC story with us, contact us through Facebook or email us at [email protected].

And here's the full text of what Jasmine had to say:

Hi, my name is Jasmine and this is Rosie, a NEC survivor She's one year and five months, She was born at 24 weeks.

She's my third baby I was having a normal pregnancy with her up to 22 weeks and I started having a lot of discharge with her. I ended up going to a regular check-up. When they notice that I was already 3cm dilated with her, they sent me to get an emergency exam at the hospital. We live in Salinas, California, so we were sent to Memorial Hospital.

We got an emergency exam done At 22 weeks, 3 days. And you know, that emergency exam helped me keep her in for two more weeks. At 24 weeks I started having more discharge, bloody discharge. I ended up going to Memorial again, to the hospital, and from there They checked my cervix and I was dilated at again, 3cm, the bag was actually already pumping down where I was dilated, so they transferred me to Stanford.

We got to Stanford, they started monitoring me they started checking me, you know, with her, She was healthy. There was no issues with her. We got there, they do what they had to do. This NICU nurse came and he was speaking to us, about what the possibilities Sorry, like I was saying the possibilities of her being born so premature - Down syndrome, brain bleed, a lot of things, but they did not mention NEC.

When he was explaining to us all of that, I told my husband she'll be okay, she's not going to be born yet you know, but no, that same night I started having contractions and I had an emergency C-section with her. She was still in the sitting position. She wasn't in the position where she should be, head down, She was just 24 weeks, And I got my C-section and I delivered her and she was born, and then she had passed away so they resuscitated her, I don't know if that's the word you say, but they brought her back to life, and they just took on with her, took her out of the room to another room, to get intubated to, to do everything as much as possible, everything to keep her alive.

I didn't get to see her until the next day at night. The first day that she was born, She was, she got donated breast milk. The second day, she started getting my milk. You know, I remember that first same day I went to go see her. The first day. The nurse told me you know, the first week is always the honeymoon for them. And it was. She was born July 13th, weighing 1 lb 12 oz, On July 22nd I remember taking her for breast milk at 3:00 - 4:00 around there, in between that time, you know, I still touch her fingers and she looked fine.

Two hours later I get a call, they told me, you know, your daughter is very, very sick. Her tummy was swollen. That it had gotten big. Very bad, it was. you know, when we got in there, the doctor told us, he, hey, Your daughter is very, very sick. You need to come. So we were staying in. a room right next to the NICU, So we just got up, changed, you know, when in there and wash our hands with our head nets to go see what was going on.

They did tell us that she was very, very sick, you know, They wanted us to sign for her to get her PICC line. She got it in this toe right here. And they put her on a ventilator where the ventilator did all her breathing. It seem like she was unconscious at that time because the machine was just shaking her Sorry, so the ventilator was doing all the breathing for her. You know, they had told us, she was very, very sick. We baptized her on July 22nd.

Two days after that, July 24th, late that afternoon, The doctor had told us, you know, Rosie have NEC, and surgery should be giving you a call later on today. we were like, okay. So then I waited for the call, it never happen, but we were there, they would go check up on her every morning. Surgery would stop by and do everything on Sunday, which was July 26th.

We went to see her and we were waiting for rounds. We asked, is surgery going to be needed? They told us "no". So then we're like, okay, we need to go see our kids, because we were staying for the whole time over there, due to her being over there. I felt she needed us more at that moment. My mom was taking care of my other two kids over here.

My daughters are 5 and 2. right now, but they were smaller last year So we thought, okay, if everything is okay we're going to visit our kids and we'll be here tomorrow. That was the plan. We live an hour away from Stamford. She was born in Stamford. We live in Celina. So we drove back and not even 2 minutes when we were walking in my mom's house to see the kids.

I get the call from surgery telling us, they needed to take her into surgery, that they have found something very abnormal on her X-ray and she needed surgery. So I did all the consent by phone. They took her and I waited for their call, which I didn't get, You know, I was just so uncomfortable though. I was uncomfortable.

So, you know, I was very worried so I decided to take off and drive over there again. When I was walking to the NICU, I heard the surgeon, she was sitting down with another surgeon, I believe, and I heard her, tell him, you know, I didn't expect to see what I saw, what we saw. So then I turn around and I'm like, "how did surgery go?" Her answer was like, "Oh, has a doctor spoken to you?" I was like, no, I've been trying to call and I can't, I haven't got an answer for her. So she said, oh, I'll give him a call so I continued my way in. when I walked in the NICU and seeing Rosie in her little in her little thing. She looked white as if she was white, white pale white.

The only difference, you know, she looked like she was dead, to be honest. The only difference was that she was warm. It was very hard to see her like that. The doctor got there. He met me there. He took me out and he explained to me what had happened. He had explained to me, they had removed a lot of intestines from Rosie.

They left her with, I believe, 7cm of large intestines, two of those 7cm were very, very bad, but they said they still left it in there and, 2cm of small (intestines). That was the, the numbers they gave me that she was left with. So yeah, those are the numbers they told me, they had left her with.

When he told me that, I cried. My question to him was like is my daughter going to be able to live. Is she going to be able to go home? You know, at that time, You know, I did not know what he meant, you know, he told me, there's kids that have a normal life. TPN But in reality we don't know yet because she still has sepsis. She's very, very sick. Even after they had removed her intestines that were damaged, They told me, you know, she's still very, very sick.

A week after her surgery, they scheduled us an appointment to see if we still wanted to keep on going with the cares for her or if we wanted to stop the cares and let her go. You know, it was hard, Our questions as parents were like, is she suffering? Is she in pain? Will she make it? they told us, we don't know, we don't know. She was born on July 13th and up to November. That's when we started getting answers.

When we would ask, when are we going to go home? We don't know. You got to take it day by day. Those months were horrible. Horrible, when I would come home to visit my kids cuz we weren't officially home; we were staying over there most of the time, I didn't even want to come to the room where the kids sleep because her clothes were there and in my mind wondered, is she ever going to be able to wear them? Is she ever going to be able to come home? Is she going to come home? It was hard.

Her bilirubin was sky-high, her skin, as you can see her eyes are white At that time They were yellow. Her skin was yellow. She was very jaundiced. Her bilirubin was sky-high. We wouldn't get a number at times. Her liver enzymes, were sky-high as well.

On November 9th, I noticed that she had a cyst right here, It kind of grew. They took out 4 ounces of, I believe it was, pus. They said it was like a cyst. Prior to those dates that had told us, we don't plan on doing surgery on her. She got a colostomy bag when she when they have removed her bad intestines which was July 26th. That's when she got a colostomy bag. We learn to change her colostomy bag, you know, our plan was like, if she comes home with a colostomy bag, you know, we need to learn it, we want her home, so we learned to do that. Prior to that surgery that I'm saying, with the cyst, We were told, you know, we don't plan on doing surgery, you know, her bilirubin his sky-high.

You know, If we were to take her to the surgery room, you know, like we could have a lot of complications due to her liver. Due to sepsis did get a scar on her liver. they said something about cirrhosis that She could get cirrhosis, which with that scar, We don't know what could happen in 5-10 years, you know, that's what the doctor recently told us, that so far She's been doing good.

After they did the cyst surgery a week later, they decided to do the colostomy reversal. At that time, she got her G-tube as well at the time of the colostomy reversal, they measured 10cm large and 15cm small, and she had one-third of her colon left. This happened on November 16th. That I remember.

So, you know, she took a week intubated due to that surgery. We move to the ICN After she got better, after she healed. On December 23rd they decided to get her on her TPN They decided to give her her central line. She does have a central line and a G-tube still. We only use it for meds. At the time when we got moved to PCU which is with GI So at the time, when we went to PCU, she still has her liver enzymes sky-high. They started going down slowly, but it was because she started to eat. She wouldn't eat a lot, we started her off at 2ml. Two by two.

There was a time when she only tolerated 10ml and we went back down to like five. It took us a while to go up. When we got discharged, Her liver numbers were still a little high. She was still jaundiced. She had yellow yellow in here eyes still. We got discharged February 16th. She was only getting 22 ml five times a day. She was getting that, that amount and we stay 7 months in the hospital up in Stamford. We were having a lot of issues with her glucose. She couldn't hold her glucose.

Sorry, her TPN machine was beeping right now. Anyways, she couldn't keep her sugars up when she was off. When we came home, We came home at 22 hours on TPN. She wasn't able to keep her sugars up a lot. We got moved to a PCU like, in December, beginning of December. We were supposed to get discharged before Christmas, which that didn't happen, because she couldn't keep her sugars high. Like in the sixties. That's where they wanted her - 60s 70s. It took us a long time because she just couldn't there was an occasion When her, when her glucose got as low as 20.

She had never shown signs, she was always normal. She was happy, she was normal. Everything. So, it took us time to wean her off. Currently, we are on Gadex. Once a day shot. She takes Ursodiol for her liver. She's on 12 hours on TPN. She's able to keep her sugars up now. She's 15 lb 13 Oz. Currently. We've been struggling with her weight since April. We've been at 14 - 15. No more than that.

So I'm hoping, you know, to go up there. Last week We were in the hospital for a line infection. We just got out on Thursday. So it's been kind of, you know, hard, but, first line infection. She got her line, December 23rd of last year. And she's only had one line infection, we're not hoping for anymore. We want to be line infection-free. With her feeds Now.

She's taking five to six bottles of 4Oz, and, oh my God, Is she an eater. We were told that you know, she wasn't going to be able to eat for a very very long time. And no, she's been eating by mouth. Her bilirubin right now, it's normal range. Lower than 0.2 on her blood work. She's been doing spectacular. We've been taking her to Physical Therapy. She has no brain bleeds. She started crawling 3 weeks ago, so, yay for that. But, you know, NEC, I'm barely, we're barely starting We've barely learned what it really was.

When we were going through all of these stuff where cuz my daughter was dying July 22nd because of NEC. We didn't know what it was. Throughout July and November, there was no day I would not exit the hospital crying. How can someone tell you, We don't know if your daughter's going home. Take it day by day. How how can a parent go home after hearing that?

You know, now that I have more access to more reading about it, now I know why they told me take it day-by-day. We don't know. NEC just could have taken my daughter even after surgery. You know. I just, in the reality, I'm not going to lie, the first time they took her into surgery when they removed all of the bad stuff, I thought, you know, she'll be fine.

No, it took me days to understand, you know, the amount that they took out of her, How it would affect her. She has no ICB Which it's the big thing that's on the long run because that's the part that serves sugars. She doesn't have that part. So we do see what she eats. She drinks Pedialyte, so she gets her five to six bottles of four ounce bottles and she'll get like two extra ones with Pedialyte, which she'll take down. Oh, but she can't see her brother's eating candy or so because oh my God, she wants it. We do give her little tries, but we try not to go over large amount.

But like I said, you know, NEC did change our lives, you know, and I'm thankful for the doctors that have been helping my daughter, and they still do, they're great doctors, you know, and people need to get educated about this, because sometimes for me and my husband, NEC just slapped us in the face, with our daughter. And I'm thankful that I have her. I'm thankful that I have her and, you know. I'm thankful that I have her and, you know, 7 months being in the hospital, it was hard. Also being away from our kids and trying to better Rosie.

My rosy right now, like I said, she's a year and 5 months. She's doing fantastic and I hope she continues doing that. As of now, you know, my fear is that as she grows You know, what kind of life is she going to have? You know, like I said, you know, but I want to know a little bit more. You know, I'm just curious, you know, what to expect with her - she does have blow-outs.

You know, that's something I'm just curious about, you know, as she grows, Will she be able to control those, you know? She'll have stools, she'll have like 2 or 3 throughout the day, that's about it. But still, she still has that small amount. The last X-ray that they took with they made her drink something like dye or something, the contrast dye, I believe that it is.

They did say that it looked like she had more intestines, but they couldn't get an actual estimate about them unless they would go in there and measure, but I mean, there's no need for that. So it's like, you know, with us knowing that she's eating more and absorbing it that means that she's growing intestines. Her doctor, Dr. Dunn, Fantastic doctor. I'm very grateful that you know, he did what he did with my Rosie. He helped her the best way that he could. I really, you know, I'm thankful to him. He did mention that she wouldn't need anymore surgeries.

Other than that if she had issues. At the time of her surgery, I forgot to mention, They removed her gallbladder and her appendix, On November 16th. When they did the colostomy reversal, they removed her appendix and her gallbladder. Yeah, her gallbladder. He had told me that they had found stones already in there. So he just removed them just before her not to have more complications in the future. He mentioned that the intestines don't stop growing I guess until the age of 10.

So there's still hope so it's like we know she's going to grow intestines, but out of the 10 cm and 15 small cm that she had, we don't know how much is going to grow, but they're definitely going to grow. I just hope they grow enough for her not to have a lot of complications. Well, this is my story, our story. Rosie is already sleeping, but she's my little miracle baby, 24-weeker, NEC survivor. And I think this is very good that you guys are offering, you know, people to share their stories because in reality, there's a lot a lot. I've seen a lot of families have that have lost their babies due to NEC.

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If your child was diagnosed with NEC, Select Justice can help you fight for your rights and compensation.

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