**Calling All Moms who had IUGR babies**
Posted 12 January 2009 - 02:36 PM
We'd like the moms of Twinstuff that had IUGR babies to please share any information that you think would be useful. Also, if you know of any sites that were particularly helpful to you, please post those as well.
Thank you very much!
Proud Mama to Anthony & Angelina who entered the world on June 6, 2006 at 39 weeks... and ... Alexander who entered the world on
October 6, 2011 at 40 weeks!!
Posted 13 January 2009 - 01:40 AM
We were lucky it didn't happen until later in pregnancy, but not sure if my development of Pre-e was my bodies way of showing that if I had gone longer, things would have gotten worse for my boys...
Just thought it was weird...
Furry Farm Babies: We are blessed with the animals no one else wants...
Small Farm: Dogs,Cats, Cows, Pigs, Chickens, Turkeys, Pheasants and Geese.
Posted 14 January 2009 - 12:09 AM
Mom to Eight
7-24-2003 Molly & Mason
7-19-2005 Tess & Thomas
Posted 14 January 2009 - 09:07 AM
Posted 14 January 2009 - 01:53 PM
My twins both measured BIG for quite a while. Both were always above the 95th percentile. An ultrasound at 21 weeks showed them big and healthy as always. At 25 weeks, DS had fallen off the charts. The largest measurement, his head, was only 10th percentile, and other measurements (femur, etc) were 2nd percentile or less. His fluid levels were also very low.
It was the worst scare we've ever had. We could have faced delivering the next day (or the unthinkable decision of whether to deliver and risk both or wait and lose one). My OB immediately sent me for betamethasone shots. There was some talk of bedrest, but the perinatologist said that it hasn't really been shown to help outcomes, and gave me the green light to continue limited, gentle swimming as long as I was mostly taking it easy the rest of the time.
And we got lucky. We managed to eke out an amazing 9 more weeks. The doctors monitored DS very closely. We had two BPP/NSTs a week, one fluid check and doppler scan of blood flow through the umbilical cord per week, and growth checks every two weeks. His fluid levels came back up, blood flow through the umbilical cord was normal, and he managed to keep growing just barely enough.
The doctors said that as time went on, we'd be more and more strict about what would have to go wrong for delivery. To even think of delivering before 28 weeks, things would have to be really, really bad. Before 30/32 weeks, just bad. Before 34 weeks, a bit iffy. And as my favorite perinatologist told me, "If he even sneezes funny after 34 weeks, they're out!"
At 34 wks 2 days, all the scans were fine - except that his NST looked fishy. They sent us straight over to the hospital. That evening, we delivered two beautiful preemies. Both came out yelling at the top of their lungs. DD had stayed in the top percentiles - 6 lb 3 oz. (Yes, at 34 wks.) DS was skin and bones at 2 lb 11 oz. But he did very well. He never needed any help breathing. (The NICU nurses said that babies under high stress in utero often develop faster that way.) IUGR put him at high risk for NEC, but with careful monitoring of feeds & digestion (not to mention mama's good milk!) he did fine. He spent 2 weeks in the NICU, and 2 weeks in the SCN. No problems, he just had to get big enough to maintain his body temperature.
Because of DS's LBW and prematurity, he was automatically enrolled in Early Intervention. EI visited every 4 weeks throughout the first year. DS has always been right on track developmentally, or advanced for his age (crawling at 5 mo). He's had some physical therapy for tight muscles, but they say that can happen to any preemie. He's still about an inch shorter than DD, but he'd already gotten heavier than she is by 9 months, and now he must have at least a couple pounds on her.
When lab work came back on the placenta, we finally found out what had gone wrong: his placenta was abnormally small, and in over a third of it, the blood vessels were clotted off. I'm amazed that he did so well under those conditions. But he has been a fighter from day one - you've never met such a persistent little guy!
born at 34 weeks to save Andrew from IUGR
Ivy 6 lb 3 oz, 19", 2 wks NICU ~~~ 1 year later, 18 lb 6 oz, 31"
Andrew 2 lb 11 oz, 15", 4 wks NICU ~~~ 1 year later, 18 lb 14 oz, 30"
"The magic of a dance is something purely accidental. The irony of this is that you have to work harder than anyone else for the accident to occur. Then, when it happens, it is the only thing in your life guaranteed never to happen again. This, to some, is an unhappy state of affairs, and yet to others, it is the only ecstasy. Perhaps, then, you should forget everything I have said to you and remember only this: The real beauty in life is that beauty can sometimes occur." --- Pushkin to Nureyev, 1959
"Ever tried. Ever failed. No matter. Try again. Fail again. Fail better." --- Samuel Beckett
Posted 14 January 2009 - 02:50 PM
At 19 weeks, I went in for my u/s to determine the sex of my baby...that's right I thought there was only one. My midwives had told me several times that there was "no way you're having multiples, you're too small". I was small, because Ryan (Baby B) was in the less than 3rd percentile, stuck to the uterine wall with no viable fluid pac and we were unable to find a bladder or determine the sex. The u/s tech works with Dr. Quintero (TTTS expert) and immediately called him. They determined that I had one placenta and was just short of qualifying for Twin to Twin Syndrome. They determined that without a doubt, Ryan was suffering from severe IUGR. I put myself on bedrest, drank milkshakes (boost made me want to vomit) and drank tons of water. A week later Ryan had some fluid and we could see his bladder (and his pee pee). The u/s tech and I screamed so loudly with joy that we got a stern talking to from the dr. next door. Over the next several weeks, we watched as Ryan's fluid grew and grew. We seemed to be out of the woods of TTTS. Around week 31 Ryan's fluid went over 9cm and Jakes went to 4. We wondered if they could be reversing the shared flow. I was given steroid shots at 32 weeks as they feared I would be having an emergency c section in the next few days. Ryan had plans of his own though. My water broke at 33 weeks 1 day and it was definitely Ryan's. There was triple the amount of water as Jakes (which broke as I was put into the hospital bed).
After my csection (by choice) the placenta was examined. The report came back with stunning news. There were TWO placentas fused together. Jake's placenta was fine, but Ryan's was black and mostly dead. Both boys were really small. Ryan was 3lbs 3ozs and Jake was 3lbs 11ozs. Ryan was on CPAP (forced air) for a day and both boys suffered from jaundice for about 2 weeks. They were in the NICU for a month as grower/feeders and working on remembering to breathe while eating. Although the NICU was the hardest thing I had to endure, I felt much safer knowing they were being watched 24/7 instead of checking on them once a week via u/s. Whenever I go through something hard, I always have to find the silver lining. Knowing they were safe was mine. Both boys made it onto "normal" growth charts when they hit 6 months. Ryan has weighed about 2lbs more than Jake since they left the NICU. They've just barely qualified for Early Intervention twice and two weeks after the assessments they reach the milestone they "failed" during the test.
Posted 14 January 2009 - 04:58 PM
At my 22 week appointment, they began to see a larger contrast in size between the two girls. At that point, they were 24% different as far as their growth. This can be common and both girls had good fluid with active bladders, so my doctors were able to rule out the number one culprit of size discordance, Twin to Twin Transfusion Syndrome (TTTS). TTTS is very scary as it can completely deprive one twin of any nutrients while giving all of them to the other twin, causing great trauma to both. Four weeks later, at my 26 week appointment, the size discordance had greatly increased. Aurora was measuring 1lb 4oz while Bettye Katheryne was 2lb 4oz. This came out to be a 45% difference on the growth chart. Fortunately, Bettye Katheryne was right on track and not way above the growth curve. This let us know that it was not TTTS, but rather something that was solely affecting Aurora. I was admitted to the hospital immediately and have not been home since.
That first night, the doctors found it most important to monitor the girls' heart rates continuously to watch for any decelarations or irregular patterns. They also put me through a litney of tests to check for possible infection that might be affecting my placenta and, ultimately, Aurora. The next day, all tests came back normal showing no signs of present infection and Aurora's heart beat was strong and steady. The doctors still thought it best that I stay on hospital bed rest and have the girls monitored closely, so they moved me to the ante-pardum unit. We are monitored 3 times a day with what they call "non-stress tests" where they strap me up to a machine and monitor the girls' heart rates for 30 minutes 3 times a day. Additionally, we get a biophysical profile ultrasound every Monday, Wednesday and Friday. The things they look for in those ultrasounds are that both girls have plenty of fluid in their amniotic sacs, their heart beats are strong, they are practicing to breath, they are moving well and that they have good cord blood flow. We have had mostly good ultrasounds with a few exceptions, but nothing that has caused us to deliver so far. Our last growth scan was Monday the 17th and both girls had grown. Bettye Katheryne is 2lb 14oz while Aurora is 1lb 10oz. Aurora is now in the lowest percentile for growth, but she IS still growing. We will not have another growth scan until Monday, December 8th.
What the doctors have determined is that Aurora's size is due to her cord blood flow. Basically, the cord from my placenta is what regulates her heartbeat while she is in the womb. My cord is not pumping blood to her correctly and they believe that stems from an infection that went undetected early on during my pregnancy. Currently, she is getting blood pumped through her body about half or 3/4 as much as she should be. This is an issue that will resolve itself after birth as she will then control her own heart beat and will not rely on me any longer. Our current situation is just to watch and wait. If we ever get to the point where her blood flow begins to reverse, then we will deliver. It's a balancing act of "when will it be better for her on the outside than the inside?" Once they are born, we expect Aurora to perform well as she will be less stressed operating on her own and she should thrive outside the womb. Bettye Katheryne, on the other hand, might struggle a bit more at first because she is currently getting fat and happy inside my belly.
Then my birth annoucement e-mail to friends and family:
Our baby girls are here!
As a lot of you know, I've been on hospital bed rest since October 28th with inner-uteran growth restriction (IUGR) for little baby A. Our original c-section was scheduled for 12/21, but after struggling so hard for so many weeks, we decided to move it up to 12/17, just one day shy of 34 weeks. As irony would have it, baby B began to slow down on our tri-weekly ultrasounds and three-a-day Non Stress Tests over the week prior to birth. The doctors were not terribly concerned about it, knowing we were scheduled to deliver on Wednesday evening. I began to worry a little, but had nothing more to go on than mommy's intuition.
Fast forward to Wednesday...I haven't eaten since Tuesday at midnight in anticipation of an early afternoon c-section on Wednesday. Unfortunately, there were a few emergencies that came in, so we got bumped and did not get into the OR until 5:00 (so momma was hungry, thirsty and NERVOUS by then!). My OR nurses and CNA were wonderful. Putting in the epi/spinal combo hurt like nothing I had ever felt before, but as soon as it was in, my body was numb and I forgot how bad it hurt going in. After I was laid out and prepped, Kenneth came in to sit by my head and the CNA stayed up there with us, peeking over the curtain and giving a play by play so I knew what sensations to expect. I heard them begin to cut and smelled it too (something I wish I had known before hand). I could feel it, but just as a "sensation" and not as pain. At 5:21 pm, Aurora Nicole came kicking out into the world with eyes wide open. She squeaked a little, but wasn't able to let out a big scream. She weighed 2lb 4oz. The baby station where they took her was right up by my head, so I could see her moving around and she looked perfect, just little. Her first APGAR was a 5, then she progressed to a 7. While I was watching her, I felt the delivery team begin to really push on my belly. Baby B, Bettye Katheryne, was very high in my uterus and did not want to come out. My OB got quite a work out pushing on me and they almost knocked over the screen between me and them. Things became urgent and they had to actually vacuum her out. I could not see her baby station and thought I heard a slight wimper when she came out at 5:23 pm. Little did I know, she was blue, non-responsive and had her cord wrapped around her body. She weighed 4lb 4oz and had an original APGAR score of 1, yes, that is a 1. Kenneth just kept telling me how beautiful she was, all the while watching the neonatologist working furiously to get our little girl moving. Within 20 seconds, she was intubated and sprung to life. She ended up with an APGAR score of 8 after a lot of work from the NICU team. I truly believe that she was declining in utero and our decision to deliver early due to her sister's IUGR ended up saving her life.
After a quick time in recovery (still oblivious to the original state of Bettye Katheryne), I was wheeled back to my room and feeling pretty good. The epi/spinal stayed in all night and was taken out around 6:00 Thursday morning. I began to regain feeling in my feet and legs and got up to shower around 11:00 Thursday morning. Let me tell you right now, that first journey out of the bed is the hardest. I honestly didn't think I was going to make it. However, once I was up and about, it got easier and easier each time. Kenneth had been to the NICU to see the girls several times and brought back videos for me to see, but I did not get to go see them until 2:00 in the afternoon on Thursday and it was worth every painful step from my room to the NICU! Our girls are just the light of my life and such amazing little fighters.
We are so blessed that these girls are as healthy as they are. They have fought every inch of the way to get here and we couldn't be more proud of them. I am feeling pretty good. Just a little bit of sore muscles. Kenneth is off for two weeks of Christmas break so we'll be seeing the girls a lot. I've tried to post links to our photobucket below. I hope it works. They're just so adorable and pictures do them no justice. OK, maybe I'm a bit biased.
Bettye Katheryne came home on 1/5/09 and we are awaiting Aurora's homecoming in the next couple of weeks. They are both thriving and doing great!
Read Our Blog
Posted 15 January 2009 - 10:05 PM
You can read my full story in my blog in my siggie. My boys were born at 28wks 6days due to IUGR in Baby B's (that's Evan) placenta/umbilical. Cameron (Baby A) was born weighing 2lbs 15oz and Evan was 1lb 7oz. We knew from the beginning there were issues because Evan's amniotic sac was half the size of his brothers and it stayed that disproportionate the entire pregnancy. Today they are 9.5 mos old actual and 7mos old adjusted. I must admit that they have significant developmental delays in their fine and gross motor skills and severe reflux/GERD causing them to currently have the FTT tag and today weigh under 13.5oz for Cam and 11.8oz for Evan, but are healthy in all other ways.
"You must be two people to assemble."
~Actual quote from IKEA furniture instructions.
Posted 21 January 2009 - 10:55 PM
The doctors noticed she had a small placenta, but no one told me it was going to be a problem. Aparently they don't know why it happens, but it's more common with multiples. At 30 weeks in my pregnancy I started to feel like something was wrong. I don't know if it was stress or what, but that same week I started having an irritable uterus/preterm labor symptoms and had to be admitted to the hospital for a day and a half of monitoring and meds and steroid shots. They put me on nifedipine and things slowed down, so I was sent home on bedrest.
At 31 weeks I had a followup with the peri and he found that Baby A was starting to struggle a bit. The placenta just wasn't big enough to give her all the nutrients she needed. She was only measuring 28 weeks by that point, while my Baby B and his placenta were fine. I was on bedrest, although the peri said I could still walk around the house a bit and shower, etc. I spent all my time laying around the house eating as much protein as possible (about 100g/day), to try my best to fatten my babies up! I was being monitored twice a week with heartrate monitoring and biophysical ultrasounds with the peri.
At 34 weeks my baby was going into distress. She was now measuring 30 weeks, and they'd had the steroid shots, so I went straight from my appt to L&D and a couple hours later had a cesearian birth. Both were healthy but had to go to the NICU. Baby B (4lbs) was on the CPAP for a few hours, but my IUGR baby (3lbs) was so strong she never needed oxygen! They stayed in the NICU and then step down nursery for 17 day (baby B) and 21 day (baby A), as just feeder growers. Never had any As or Bs.
They were able to start practicing breastfeeding as soon as I was able to come see them, and we continued doing that once or twice a day until they were able to do a real feeding that way. I pumped for about 7 weeks full time and supplemented with formula, and after that they were finally strong enough to start getting some meals by nursing. We slowly increased the nursing and now they are both doing it full time, so it is definitely possible even after a difficult start.
My Baby A is 4 months old now and is still facing more challenges than her brother. She is a couple of pounds and inches smaller, and she is not quite as strong physically. She interacts the same way as her brother, but she doesn't have the muscle control yet. The pediatrician explained that we just have to think of her as a much younger baby, because her development in the womb was so different than his. Really, in some ways it's like having a 34 weeker and a 30 weeker instead of two the same age. I don't think that's the situation for all IUGR babies, but it's good to know that it can happen. And my baby gets stronger literally every day, so she'll catch up in time.
born 6 weeks early from IUGR, 3 weeks in the NICU/special care.
Posted 25 July 2009 - 06:28 AM
While working with on trying to establish breastfeeding one of the nurses mentioned IUGR and i had no idea what she was talking about so i asked her and she explained to me that Ruby was being was struggling to get any nutrients from the placenta and that had the dr allowed me to go further on with the pregnancy she would of "perished" So i thanked my lucky stars for modern technology and the endless monitoring that was carried out while i was pregnant. Ruby latched on straight away and was starving hungry for a wk! After the first wk she was zapped of all energy and feeding her became a struggle so she was back on the tube feeds to give her a rest. Her weight gain was slow at first but she is now caught up weight wise. Ruby is such a big character and charms everybody she meets she lights up our lives, both my girls do! Ruby seems to be meeting certain milestones a few wks behind Amber but who know's if that is related to the IUGR? I do worry about what she eats and if she is developing ok but the drs tell me she should be caught up by the time she is two so i try my best to keep that in mind. I had never heard of IUGR until the nurse explained it to me after she was born, it's all new to us and we are just taking things as they come or at least trying to.
Posted 25 July 2009 - 09:48 PM
Parker (06/21/05, 7 lbs. 3 oz.)
Chase (02/18/07, 7 lbs. 13 oz.)
Alexis (2/17/09, 2 lbs. 10 oz.)
Benjamin (2/17/09, 4 lbs. 15 oz.)
Alexis and Benjamin born at 32 weeks via emergency c-section due to Alexis' IUGR.
Posted 29 November 2009 - 09:58 PM
My boys were born at 31wks 2 days weighing 3lbs 11oz and 2lbs 8oz and spent 67 and 74 days in NICU. My little guy actully did better than his big brother and they told me that that is often the case because they are used to fighting harder for the nutrients in utero. He did very well in NICU and it took him a little longer to come off of the respirator and CPAP than his brother but after that he did really well. His brother on the other hand was a terrible feeder and had tons of infections etc.
They have always been at least 3 pounds apart and are now 20 pounds & 17 pounds and two weeks shy of their first birthday
My smaller guy has been a little delayed in gross and fine motor skills but he really took off in the last few months and is now walking along furniture which is something we never thought would happen this early
My bigger guy also has some delays so I think it is just from the prematurity and not necessarily the birth wts.
If anyone has any questions or just wants to talk about IUGR I would be glad to chat anytime
Posted 30 November 2009 - 03:18 PM
My peri didn't want to wait too long to deliver even if there weren't any more problems, so we made a plan to induce at 35 weeks. They did an amnio to make sure their lungs were mature, then started to induce the next day. About 4 hours into labor, they "lost" B (couldn't find a heartbeat) and an ultrasound revealed he had turned transverse. I didn't want to risk it, so we decided to do a C-section and delivered about an hour later.
Both boys did pretty well at birth (both 7,8 APGAR scores at 1 and 5 minutes), but B was very small and had to go straight to NICU. A (Nate) was 4lbs 3oz and B (Jack) was 3lbs 2 oz. Jack was a feeder and grower for 18 days in NICU and released when he hit 3lbs 12oz.
He was a much fussier baby, had some reflux issues, and at one point was 1.5 lbs smaller than Nate. He was also behind in a lot of milestones compared to Nate, especially in regards to neck strength, pushing up, rolling over, etc. It was like he was "preemier" than Nate.
Then at about 6 months old he started to eat more, gain more, grow more, and get all overachiever. At 1 year he was an inch taller and over a pound heavier than Nate! They've evened out again, but for a while Jack was the "big brother" and is still way ahead in gross motor skills and muscle tone.
So my advice is to have hope. These IUGR babies can catch up; sometimes with a vengeance!
Posted 19 December 2009 - 08:52 AM
DH Adam (32)
DS Owen (6)
DD Jocelyn (3)
ID girls born at 29w6d on 4/3/09 after 14 weeks of bedrest via c-section due to IUGR and Stage III TTTS complications
Lia: 3#2oz 15" Eve: 1#15oz 13"
"Perpetual optimism is a force multiplier." (Colin Powell)
Posted 21 December 2009 - 11:21 AM
We were shocked to find out about twins at 19 weeks. At that point our awesome peri's office (and we only happened to be there since the doc was a friend of my OB, fortuitous!) saw that our girls were di-di. They assumed fraternal, and so weren't phased to see Baby B lagged behind in size and weight by a little. She did all along. Totally healthy and great pregnancy. If they had been fraternal I wouldn't have had a reason to worry.
The girls were born at 39 weeks, and weighed almost 1 lb apart: 6.11 and 5.12. Later we had them tested and found out they are MZ.
Izzy, our Baby B, has always been lighter than her sister. She eats totally differently and is now about 1.5 - 2 pounds lighter at 22 months old. They are almost the same height and have hit all their milestones together. But Izzy's body has always been tiny. She looks like a little elfin changeling. She's active, but I wish I didn't see so many ribs.
I've never gotten a good explanation of what happened or why. One nurse I talked to afterwards suggested Selective IUGR. If it was two placentas, fused at birth, both looked good. It also might have been a less favorable cord placement. Whatever was different between these girls hasn't held Izzy back, but has totally altered her. She's a very different baby from her sister - independent, inquisitive, more focused and much less interested in food.
My babies are a wonderful blessing, and are each amazing. But I wish I knew what happened to Baby B.
BTW - Izzy's iron stores were less than her sister, something to watch out for in lower weight babes!
Posted 22 December 2009 - 10:34 AM
Then you start second guessing everything you did. But I felt fine, why was the baby not growing? Was I doing too much to cause this to happen? Why after all the fertility issues was this happening to us? So I rested and did everything they told me to do. I came home and googled everything under the sun, scared myself to death with things I found. Came onto Twinstuff and found so many great people similar stories willing to share their experiences.I went to all the extra ultrasounds and at each one we hoped for good growth to keep things going just a few days/weeks longer. Baby B started to do quite well at one u/s and they relaxed the homecare visits and I could go to the hopital once a week instead for the tests.
Then at 33 weeks we had another one of those dreaded letters after and u/s appt and they sent us upstairs. This time it showed her head wasn't growing but her abdomen was and now they were quite concerned, also her cord flow was still showing the resistance they were watching. So now we had several issues and they checked us in for our c-section to be done in 48 hrs after my steroid shots. We actually got bumped another day and to be honest I was happy that it gave them one more day to grow in me. So at 33 weeks and one day they were delivered weighing 4lb 8oz and 3lb 10 oz. Both came out screaming and neither had any breathing issues. They were off their IV's in a couple days and soon in a crib together. We had no major setbacks, no jaundice. We consider ourselves very lucky that they were in the NICU for only 3 weeks.
They are almost 3 months old and doing well. They still weigh approx a pound apart. Baby B (Quinn) is a little slower to do things that her sister does (Lexia), but not by much. She seems to need a bit more sleep and isn't cooing as much or smiling yet. These things concern me a little, but it apparently all normal. We are just enjoying every moment of them being here, healthy and happy!
Spent only 19 days in the NICU
Posted 16 April 2010 - 01:16 PM
Baby B continued to grow during the pregnancy but fell in percentile each visit. Each time I went, the OB told me to prepare for a delivery the following visit. Shockingly, I made it to 34 weeks before baby B fell below the 10th percentile and the OB felt it was time to take the babies out (after 12.5 weeks of bedrest!). Baby A was born at 4lb8oz and baby B was 3lb5oz. Both babies were perfectly healthy- baby A spent 11 days in the NICU and baby B spent 17 days...both were just feeders and growers.
They have done fantasticly well for being 6 weeks early...they are for the most part hitting milestones for their actual age (even ahead in some areas, they both rolled over at 4 weeks actual age!). At 4 months, baby A is 14-15 pounds and baby B is about 12lbs. We do have some issues with reflux, flat heads, but nothing at all serious.
I had the worst pregnancy...throwing up every day, miserable with worry with these guys and now I stress myself out over every ounce they eat, how much tummy time they do...it really is nice to reflect back on the days that I worried if baby B would make it out alive or make it past 24 weeks and put things into perspective.
I always looked for other posts from people who had gone through IUGR and I hope that my story will provide some hope to someone out there.
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