IUGR diagnosed at 24 weeks

Hello everyone. I'm a labor and delivery nurse of 8 years, a doula and a mother of two children, both born at home. This is my third pregnancy and this baby was diagnosed with IUGR at 24 weeks (at the time measuring 18-19 weeks). My husband I were told at that time that we should expect a fetal demise at any time and that it the baby would never grow to a size that would enable the neonatologist to place an ET tube. We waited at home for nature to take it's course.

Two weeks ago we went in for a growth scan (I was still feeling movement and we still had fetal heart tones) and we were told that the baby (a girl) had grown. She was now close to 400 grams but still too small to help.

If, at next week's scan, she has grown closer to 500 grams she has a chance at surviving. I'm now 31 weeks and likely facing a classical c-section and the baby will likely spend 3-4 months in the NICU should she survive.

After having had two homebirths including one waterbirth I'm not looking forward to a c-birth but, like any of us, I'll do whatever I can to increase the chance of this baby's survival.

I'm hoping to learn from the experiences of others here, especially those who are mothers of older children, attachment parents, breastfeeding moms, and other like minded folks.

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Sending prayers your little one hangs in there longer and decides to grow. Do they know what is causing the IUGR? I was diagnosed with iugr at 23 weeks, baby was measuring under 21 weeks. They kept telling us our baby would die at any given time and not to expect a happy ending. I spent so much time in the hospital on ante-partum but my little guy hung in and fought. We delivered via c-section at 32 weeks, my little guy was 3lbs 2oz and didnt need any help what so ever, he did amazing. Scary thing is though my placenta was so dead, he wouldnt have lived another 24 hours inside.

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Welcome to the group!

Well, I know that the smallest baby in our NICU was 340 grams and she's a happy four year old! My 26 weeker doesn't have IUGR but from the wee ones in the NICU that I know, as small as they were, they never needed any respiratory help, they just needed to grow :)

I was also planning a homebirth :( I was told that I would need a classical as well, but, I lucked out with the slim percentage and managed to have the most "natural" hospital birth possible in under 5 hours. So, there's hope! You're right to be scared. It will be nothing like you wish for. Everything in the NICU is completely unnatural. You go from waiving Vitamin K drops to them having every possible intervention known to man. It's not easy but I had to change my mindset. I had to go from "look what's happening to my baby", to "look what's saving my baby". I've been pumping for 4 months now, it's terrible, but definitely worth it. Hopefully in a few weeks i'll get the latch i've been waiting for!

Keep us posted an good luck!!!

Kara

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My daughter was IUGR as well, although not as tiny as yours (29 1/2 weeks, 866 grams). IUGR babies often do better in the NICU than their size would predict. These babies are under stress in the womb, so their lungs have matured faster than a same size baby of younger gestation. Of course, there are no guarantees, but chances are good your daughter will "act" like a 31 weeker. She still probably be slow to gain weight in the initial weeks and months after birth, but that is not necessarily an issue. My daughter was 14 1/2 lbs at 12 months actual (9 1/2 months corrected) and 21 1/2 months at 2 years actual. She hit her milestones on time, so her small size did not hold her back. She caught up size-wise between ages 3 and 4.

I had a classical c-section with DD. She was delivered the same day that reverse diastolic flow was seen (I had been in the hospital for 2 weeks, receiving daily scans.). I have seen *theories* that c-section preemies are less likely to to have an IVH. I don't know if that always applies, but I do know my daughter did not, so I consider the c-section in a postive light.

Since DD never learned to nurse well, I exclusively pumped. She got expressed breastmilk until she was about 11 months old. She also never got sick with more than a normal number of colds, despite going part time to an in home daycare.

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redpomegranate,

I was in a similar situation as you are, and I am so sorry. Severe IUGR for me was not diagnosed until close to 25 weeks, but it was clear the growth had stopped somewhere around 19-20 weeks. The size prediction for us was close to 14 ounces, and everyone was preparing us to lose our baby in utero. I went on bed rest in the hospital the next day, and had daily ultrasounds to look at the blood flow in through the cord (was admitted with absent end-diastolic flow) and delivery happened the day they saw the flow reversing (27 and 5). My son was born weighing 510 grams (1 pound, 2 ounces) and despite the fact that they told us they didn't know if they could tube a baby so small, they had no problem with it. He did amazingly well in the NICU. 95 days in total, and it was horribly stressful, but he acted his gestational age rather than his size and had the benefit of the antenatal steroid shots. He was off the vent and on a nasal cannula the night he was born. IUGR babies are fighters because they are used to fighting for everything they can get. My son is a happy, healthy 2 year old today and I am so glad we gave him a chance when nobody else did (we were basically told we should probably go home and wait for him to pass).

With regards to the c-section, they are pretty much mandatory for an IUGR situation like this. IUGR babies don't do well with the stress of a normal delivery because they are already so compromised. We were told our son would never survive it. I also ended up with a classical c-section because my uterus was way too small to do a low transverse. I don't know that the procedure or recovery are any worse, but it is a consideration for future pregnancies (I am pregnant now and stressing about things like rupture risks on top of everything else). Unfortunately, like you said, sometimes there is no choice but to do what is the best for baby. And as pp mentioned, in the NICU you kind of have to abandon your ideas of what interventions you were willing to accept, because they are now necessary for saving the life of your baby.

I hope your LO keeps growing in there, and that you get good news at your next scan. You and your family will be in my thoughts and prayers.

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Hello
My story is similar to yours. At 24 weeks 1 day my daughter was diagnosed with severe IUGR due to my severe pre-eclampsia. At both my 6 week and 20 week U/S I measured exactly on. But shortly after my 20 weeks u/s she stopped growing. I was admitted for my pre-eclampsia at 24w1d and the u/s that day showed she was measuring about 400 grams. We were given the choice to either deliver that day and risk having a 24 weeker or try to make it to 25 weeks where the odds were better for her but we risk stillbirth as we waited. We decided to wait it out to hopefully give our daughter the best chance at life. At 25 weeks, we had a biophysical profile done. She looked great. She had grown to close to 500 grams and she scored near perfect on everything except blood flow. It had gone retrograde. We delivered that day via C-section. She was born at 350 grams and did amazingly well for how small and early she was. If you want to read about our journey please feel free to visit www.caringbridge.org/audreydiehl.
I too had a classical c-section. Well the scar of my C-section is the horizontal bikini line cut but my uterus has the classical incision. I am sad I will never get to experience labor and natural childbirth.
As far as breastfeeding and pumping, I did not produce much at all. I did continue for about 3 months but never got more than 1 ounce total. But I was lucky she did not require more. As soon as she required more than I was able to produce I had to switch her to formula.
Good luck in your new journey!! IUGR babies are amazing and strong! Please keep us posted!

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My son is also an IUGR survivor. There are lots of IUGR moms on this site, so I am sure you will get some useful and reassuring information.

We knew something was wrong at 16 weeks. IUGR due to placental insufficiency was suspected at 18 weeks and confirmed as time went on with all the classic presentations of IUGR - reduced blood flow to the baby, reduced growth and low fluid at 30 weeks. Ours is a different tale to most here because despite the early diagnosis, the pregnancy continued, and was only halted by intervention at 36 weeks because after that point the risk of stillbirth increases. My son was actually still doing fine (and so was I), but had practically stopped growing at that point (he weighed 4lb at birth).

I had a c-section mainly because my son was also breech. I know that with your experience as a labor nurse you will know more about it than I do, but in my opinion, the c-section was the easiest part. On the first day, you think you'll never sit up again, but the next day, you're getting up out of bed. For a week or so it's hard to get up and down and to bend down, and you get very tired when the meds wear off, but it's amazing how quickly the body bounces back. I know that c-sections are not ideal for babies either - they're supposed to be pushed and squeezed after all - but faced with no other option, I would say it's not so bad for them either really.

I wasn't able to breastfeed my son despite having good support for this. I think this was not the result of being IUGR, however. My son has low muscle tone and couldn't suck enough to get anything from the breast. He had an NG tube for 4 weeks which we used to top him up when he was too tired to bottle feed to ensure that he gained weight. I expressed milk for the first couple of months and then he had formula.

Obviously, I don't know your exact situation and what indications there were to make the doctors say what they did, but it seems maybe you were given the worst case scenario when you were told to expect fetal demise. I think with careful monitoring, there is not necessarily reason to fear the worst when a baby is IUGR.

Wishing you well.

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Thank you all so much! You folks are great. @MommySunshine Ivy is IUGR due to a crap placenta. I do not have pre-e nor where there any indications of chromosomal abnormalities. I had an amnio the day I was diagnosed and it's not a trisomy nor triploidy all of which are not compatible with life. They also ruled out any infections and obviously it's not drug use which caused these problems. Given the fact that I've had two healthy kids my chances of having a placenta like this is kind of like winning the lottery...in reverse.

@VibrantLight that's pretty much been my feeling about all of this. Though I'm a strong supporter of homebirth and low intervention births; as a l&d nurse I know that interventions when used properly are life saving :) So I know that in this case instead of surrendering to the tidal wave that is labor I will be surrendering my trust to the docs in whom I entrust my care. And yes; very strange to be not just accepting but welcoming many interventions to come.

I do hope Ivy will be a good breastfeeder; after extended nursing with my other two it would be pretty hard to let that part go. I'm hoping my long history of helping other moms nurse will come into play. Poppy was a bit of a tongue sucker when she was born and Sage was just a typical first time baby of a first time mom with all the normal struggles that come with that.

Ivy was measuring just 13 oz at 29 weeks but the fact that she's moving inside of still is reassuring. She's been quieter this week but I used my doppler to listen to heart tones earlier this week and she was at 150 and I heard and acceleration! It's funny; though I've been an RN for almost a decade and I work with babies (though not high risk babies) I'm learning a whole new set of acronyms: ABD's etc.

My scan is next Tuesday; which unfortunately is the day before Sage's 13th birthday so I'm really hoping for good news. After that we'll start bi-weekly BPPs and NSTs until the day arrives.

Thank you again for all your wisdom

~Madelene

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Hi there, I've been on this path with our 6 year old. We decided to deliver her at 26 weeks when we thought she was close to 500 grams. Unfortunately for us, she was 370. We decided to deliver because the dopplar cord scans were showing intermittant reversed flow. Have they given you the option of having the flow monitored more closely, perhaps in-patient, so that you could decide if you want an emergency c-section?

From what I have learned here, over the past few years, there is some variation in the way that hospitals and professionals approach these extreme IUGR cases. Some places say 500 grams and some put more weight on the value of 28 weeks, no matter what the size, to give her a chance outside. I just feel strongly that you should know that 500 grams is important, but it is not the ONLY number while some places act as though it is. It may partly depend on your state. Do you know if they don't allow treatment for babies under 500 grams?

There are also some treatments that mother's here have been given, Viagra and oxygen for the mother have been used and some have seen improved growth after starting them.

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Due to my pre-e and HELLP, we had no choice but to deliver my son at 24 weeks. He was IUGR at 395 grams. He cried at birth and they stuck him on CPAP, but he had to be tubed within hours of birth. He was TINY, but they didn't have any problems tubing him. I'm hoping that, should you be forced to deliver in the next week or two, that you will have amazingly talented RT's and nurses with the proper equipment available... because it absolutely IS possible to vent them so small, if you just have the skilled staff and supplies available. Welcome to the group and pleast keep us updated!

Heather

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Hi,

My glorious two year old son was born at 32 weeks weighing in at 1035 grams and about 15 inches long. He was tiny and did need a few blood and platelet transfusions but he was a little monkey straight from birth. (he would kick the glass in his isolette if his nurse was late with the boob juice for his NG tube). In my case they did not know he was IUGR until he was born - he measured perfect at my 28 week ultrasound but I apparently had an abruption at around 29 weeks that they did not detect caused by high Blood pressure, stress and of all thing - PUPPPS - they hinted the pretisone could have contributed to this. but he came out with low apgar at first 6-4-5 but at the second check was 8-9-9 requiring oxygen for only the first 3 hours and then was on room air from that point on.

We spent 6-1/2 weeks - mainly for body temp, ABC's and growing but the good news is - he is now almost 2-1/2 and still breast feeds at night (he does not sleep through but I rather be sleep deprived then not have him). He was an automatic hunter when it came to breast milk (around 36 weeks gestation). We needed to use a nipple shield and top up with a bottle but he began to refuse the bottle fortified with formula by about 6 weeks adjusted and gave up the nipple shield at around 8 months actual (he was around 9 pounds when that happened) but then he really started to gain weight between the breast and solids (we never did rice cereal).

As for the rest of it - I used the basinette at first but ended up co-sleeping within a few weeks (I am a huge fan of co-sleeping my 18 year old co-slept with me until he was 5 or 6 then on and off for a little while after that even though he had his own bed and room - he chose to). We still co-sleep and he is a little snuggle monkey. I found it really helped with the bonding process.

My only regret is that I did not get the home birth I was planning with my departed husband that we had hoped for and have not gotten my stomach muscles back yet from the C-section (horizontal cut - they rarely do vertical cuts here) but I have the love of my life who makes up for all the disappointments of not having the pregnancy and the birth I wanted.

Tara

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Hi!
I am the mom of twin boys one of whom was diagnosed with IUGR at 20 weeks (the anatomy scan). Our goal was to make it to 28 weeks so we could "save" the other baby. I went on bedrest, drank tons of water and ate tons of good protein to help him gain weight.
His placenta at 20 weeks was a grade 2 already and he was low on fluid.
To make a long story short, we made it to almost 36 weeks (he wasn't showing any signs of distress until then). He was 4 week behind in development, like a 32 week old and behaved as such. However he breather on his own thanks to 4 double doses of cortisone shots given at 32 weeks.

The boys are now 5 1/2 (almost) and John (IUGR) one continues to hover at the 30% percentile for his age. He is smaller than kids his age and has some issues because his placenta deprived him of oxygen (mild CP, AS, ADD, vision issues, feeding issues, sensory issues). I know it might sound like a lot but he is a very high functioning child with an I.Q. worthy of Mensa (the experts' words, not mine!). They are in mainstream Kindergarten and will go on to First Gracde in September with the help of an aide.

I don't really have any big words of wisdom other than eat loads of protein because that is the only thing that builds muscle and fat on unborn babies...and get plenty of rest. We really did see an improvement with a change of diet and quantity and I think this, and the x2 a week monitoring is what saved John.

Sending hugs your way!! Hang in there and feel free to ask me anything :)
Tina

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Boy do I ever know your feelings, pain, worry!! Today marks day 78 of our NICU journey with endless days in site, but the good news is we are alive, on the road to getting healthy, and heading towards home!!

I am a stay at home mom to two amazing girls our oldest almost 5 and our second 21 months! Like you, I had two seemingly perfect previous pregnancies and deliveries! I knew something wasn't right around 17-18 weeks and my feelings were confirmed at the 20 week scan when we received the grim news and "diagnosis" of severe iugr, absent end diastolic flow, and oligohydramnios (low amniotic fluid) which by 22 weeks turned into NO fluid. Our sweet girl then had no measurable fluid from 22-27 weeks. It wasn't until 24 weeks that she "fell off the curve" and fetal demise was told eminent. I was admitted at 25 weeks for blood pressure, which turned out to be "white coat syndrome" and just plain nerves from this entire process! The goal was to get the steroids administered and get me to 28 weeks or 1 lb whichever came first. I had daily NST's and bi-weekly BPP's and we delivered via emergency C-section (a classic C-section) the day reverse flow was detected. That's the game changer! My understanding of the having a classic C-section is that it enables the dr to remove our precious babies with the least amount of trauma in hopes to reduce or deter in brain bleeds. In our case, I'm thinking it worked because Alli has had no brain bleeds and usually by this point you are out of the woods.

I won't lie....I feel like we've been to hell and back more than several times! We were basically given no hope at 24 weeks that she would make it to delivery, but she did. They were not even sure they would be able to intubate her, but within seconds of the delivery, I hear amazing words coming from the team consisting of a Neo, RT's , nurses, and a nurse practitioner, "Did you hear her cry!!??" AND "She's intubated!!!!" Our Allison weighed 420 grams, that's 14.8 ounces and we were SO excited!! I remember there were a few cheers from my OB and the Neo at the announcement of her weight and the fact that she was intubated! Alli struggled and was vented for 8 weeks due to her severe BPD because of having little to no fluid. They feel pretty confident had I even had ANY fluid she would have done AMAZING since other than her lungs and a bout with pulmonary hypertension which is being treated with Viagra, she has not had any of the other REAL preemie issues!! She tips the scales at exactly 4 lbs and took her first two bottles last night, albeit small, but like a pro. I was able to begin some non-nutritive sucking last week and we are working on heading towards some nursing. I will never be able to exclusively breastfeed because my milk will continue to require so many supplements for her significant Rickett's, but praise God I am a dairy farm and have been able to pump upwards to 60 ounces a day so we have an extremely nice supply being built up and I will continue to pump as long as I am able and hopefully be able to nurse some….they’ve said possibly 50/50 for our particular situation although we will not know for sure until we get closer to going home!!! We are still anywhere from 4-6 weeks away from going home, but we are heading that way. Alli is now on 3 liters high flow cannula, receiving and tolerating her bolus feeds, and as I already said began taking partial bottle feeds last night!! Now, all we need to do is get her oxygen requirements down to none or at least an amount we could take her home on and go to full and/or bottle and breast feeds!

I wish I had “words of wisdom” with how to manage it all and have older kiddos at home, but I don’t. It’s just very simply…hard! We live an hour away from the NICU and are there every day! We try to have “special time” with our big girls. It’s all about quality not quantity during this process! In the beginning, my in-laws were here for 6 weeks which was the most critical time of Alli’s young life. I’m pretty sure I would have lost ALL sanity had we had to pull this all off without them. Our families live 8 and 13 hours away so we have no real family to help us! I will say those first 2-3 weeks we rarely saw our big girls. Alli was on the brink of death so many times. The hospital allowed us to stay in the rooming in rooms, the ones used for parents and their babies to stay in before being discharged from the NICU, those first few weeks. We would come home by dinner a few times when she was what they called “stable”. After about 6 weeks of hell, things began looking ok and we began our new normal routine. It’s still very difficult and I still suffer with guilt wherever I am, but I know that this too shall pass and hopefully very soon!

I like to end on a positive and say that I was told over and over that despite Alli’s size she should act like she is a 27 weeker and had I had any fluid and her lungs were able to develop properly I think it goes without saying that we all think this road would have been a little easier! Chances are your sweet girl will act her age as well! Please make sure, which I’m sure you are knowledgeable about all this given your career choice, that you deliver where your Ivy can receive the best possible neonatal care. When we started heading down this road my regular OB wanted to send me to another hospital because of the NICU. Although I did completely trust him we still very much hesitated because we were under the impression that another hospital (that tunneled to the children’s hospital) was a better NICU and would be more equipped to handle such a small baby! Turns out, although it is still an amazing children’s hospital it wasn’t the better NICU so my trusting DR was right! Basically, they just had some great advertising, but have had NO surviving babies under 500 grams which we were estimated to be 350-395. I think the daily NST’s are a must since I was told over and over again that when the cord flow reverses that’s the game changer and it’s anyone’s guess how long the baby can survive at that point…a lot of research that I had done previous to her being born was anywhere between 3-12 hours, but I have heard of Mom’s going a week or two. I was too scared to risk that! So, since we were juiced up on steroids we decided to give her a chance and although we are still here, I think you can see we are heading that way! These severe IUGR babies are fighters and have had to fight for everything they’ve got up until this point! My thoughts and prayers go out to you and your family during this process! Sorry, I have a tendency to ramble!!

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I'm really fortunate to live in a state (MN) known for it's good health care. Heck! People come from all around the world to go to Mayo so I know that we're in really good hands. The Neo spoke with us for an hour at our last scan about the low rates of line infection (none for over 400 days) and other good outcomes. Another nice thing about this NICU is that all the rooms are private which makes it possible to room in as much as one wants. This also decreases the amount of stimulation the babies are getting from all the "bells and whistles" of the other babies there.

I'm very curious about the use of viagra for my bad placenta (by the way; BOY do I want to get a look at that thing! I love placentas and always take a good look at them at every delivery attend; I want to see this problem placenta before they send it to histo.) and I'll speak to the perinatologist next week.

I'm so hoping that we're not seeing absent end diastolic flow or reversed flow on Tuesday. Makes me a little nervous because Ivy seems quiet this week. This has been the biggest lesson in staying present I've ever had.

Tara I'm so sorry you did not get the home birth you longed for. I can understand your sense of loss. I hope all the women here have had some way of processing these experiences. I think there'd be a lot less ppd in our groups and less ppd in general if we all got a chance to mourn and talk about our traumatic births! We can be thankful for our babies and still grieve the way they were born; it's okay and it doesn't make us selfish! :)

What's pretty amazing is that at my first scan I was given an AFI of 1.7 (very low fluid; almost nothing really) and at 29 weeks it has risen to over 5! Incredible.

So. We'll see what next week holds. Thanks for being here for me ladies; you're helping to keep me sane; for sure.

All my best

~Madelene

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