5 Things I learned about IUGR – IUGR Awareness Day 2017

Last Spring when I was sitting in the doctors office having an anatomy scan, I thought nothing of the fact that Isabella was measuring small. It was her belly that they said was tiny, but I just thought it was the fact that her dad was slender and perhaps she was taking after him.

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Early that summer my wonderful mfm (maternal fetal medicine) doctor sat me down and explained that the baby had Intrauterine Growth Restriction (IUGR) and that I would have to start coming in weekly at 28 weeks for her to be measured because of this. He explained that many times IUGR babies have to be taken early because they thrive better on the outside than they do on the inside. I seriously sat there like a deer in headlights just smiling and nodding as if I understood what he was talking about. I had no clue what intrauterine growth restriction was. I didn’t even know what questions to ask. At the time I had complete placenta previa, so I just added IUGR onto the pile of other things I needed to worry about.

I’m very happy to say that we made it to 35 weeks before scans started getting wonky and Isabella wasn’t as reactive as they wanted her to be. When she was born she weighed 4.4lbs and was 17 inches. Compare that to her sister who at 37 weeks was born 7.2lbs and 21 inches. Even though I had a wonderful doctor, I still didn’t know much about IUGR or what it meant for my baby.After having Isabella I still needed to sort through so many emotions and figure out some things. Here is what I have discovered on my journey.

AN IUGR DIAGNOSIS IS NOT THE END OF THE WORLD

I know it’s scary. The doctor throws words out there to you like preemie, stillbirth, NICU. I just want to tell you to breathe and believe. Pray on it. Give it to God. And by all means, please follow your instincts. If measurements seem off to you, if you feel like your baby that usually kicks 20 times an hour now only kicks 10 times an hour, go get checked. Ignore any looks you may get form doctors or nurses. Be in control of your own pregnancy.It is important that you and your doctors are proactive. And if you have a doctor that isn’t well versed in IUGR, find one that is. If you can’t because you live in a super small town, join an IUGR group online so that you can have a support system and you can find out helpful information from others that have been where you are. It is because of prayer and super proactive doctors that I believe Isabella is here today.

IUGR IS STILL A MYSTERY

The medical community still doesn’t have a solid answer as to what causes IUGR. IUGR occurs in about 3% of pregnancies. It can be caused by placenta problems, poor nutrition, chromosomal abnormalities, unhealthy lifestyle of the mother… the list goes on and on. There is not one thing that doctors can look to and say yes, this is what is causing 3% of babies born to have IUGR! In my particular case, after Isabella was born I was told that my placenta was pretty small and that is thought to be the reason why she has the diagnosis.

THE GUILT IS REAL

After Isabella was born I felt so much guilt. I felt like it was totally my fault that she was born so small. My body failed her. I downright wailed after holding her for the first time. She weighed nothing; light as a feather, she was. And that broke my heart. If you are faced with an IUGR diagnosis, please keep this in your mind and carry it in your heart – Itrauterine Growth Restriction is oftentimes ideopathic. There was nothing I personally did to cause it. I had zero control over the formation of the placenta. Sometimes life just happens, and it makes us sad especially because we can’t control it, but God is always in control. However, I’m not going to tell you not to be sad. Be sad. Be angry. But don’t stay there.

EVERY IUGR BABY IS DIFFERENT

Today Isabella is 6 months old and weighs 14lbs. Currently I know another 6 month old IUGR baby that is 17lbs, and another that is 12lbs. You can’t guess where your baby will be in the next few months, never mind the next few years! I never in a million years would’ve guessed that we would need size 3 months clothing for as long as we have. Johanna literally grew along with her age – at 3 months she needed 3 month clothing, at 6 months she needed 6 months clothing, etc. Isabella was in preemie clothing for 2 months, nb for 2 months, and has been hanging out between 0-3 and 3 month clothing (depending on the brand) since then. We legit recycle the same 6 onesies and 3 pair of pants every week. It’s frustrating for sure, but I’m just happy that she is following her own growth curve.

Some IUGR babies will have issues whether in the beginning or as they get older. Others will never have issues. It is very common for IUGR babies to deal with gastrointestinal issues, and Isabella is no exception. She has been in pain for majority of her short life. It’s not continuous, thank God, but when it hits… it’s hard for her screams to not tear me down. Some of it is a milk protein allergy. Unfortunately the formula that can help her best with this,neocate, is astronomical in price and insurance rarely covers it. We now have her on Alimentum, which is still pricey, but not as bad. She still has boughts of pain, but not as often or intense. Her digestive system is just not that awesome yet and even with medication her acid reflux is terrible. We’re praying on it.

IUGR BABIES ARE FIGHTERS! SO PLEASE DON’T COMPARE THEM TO OTHERS.

Join any IUGR support group and you will often hear mama’s say that their babies are feisty! Every once in a while you have a mom that says hers is super chill,but feisty is usually what we call them. Not only are they feisty, but they are fighters. I have never met a baby as determined as Isabella is, and I’m sure many IUGR moms could say the same. I don’t know if it’s their small size, or maybe they have experienced more in utero than we will ever understand, but they definitely have the heart of champions. It is important for you to know this and for you not to go comparing them to other full term,normal size babies. I know you probably will anyway, but don’t let it mean anything. Every once in a while I’ll ask the ladies in my baby group how much their baby weighs, and I pay close attention to what their babies are doing developmentally . I don’t let it stick in my mind to torment me though. Isabella is her own person and even if she wasn’t an IUGR baby, she would still develop at her own pace. She did lag behind in responding to us calling her name and making eye contact, but she got there, in her own timing. But I bet you she could out roll any baby any time any day! That girl has discovered that she can roll anywhere she wants to go and she is all about it. It makes me giggle and I love it!She is not sitting up on her own for minutes at a time nor pulling herself around the floor like her sister was at this age, but that’s quite alright. She’ll get there when she’s ready.

Babies are a blessing, period. But I’ve discovered that most pregnancies do not go as smoothly in real life as they do in the movies.If you are currently dealing with an IUGR diagnosis, I really pray that this has been beneficial for you. I pray it has brought you some comfort and that you know if God did it for me, he can do it for you.To read more about our IUGR journey you can read this post here that I will continue to update with facts about IUGR as I learn them.

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My Tiniest Heartbreak- IUGR

When I first really saw Isabella, I cried. A wave of guilt rushed over me cutting my visit with her short. After 10 minutes with the baby I gave birth to just 24 hours before, I asked my husband to wheel me back to my room and I cried.

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When I was about 22 weeks I was informed that Isabella was small. No big deal was made about it, just that she was small and they would keep an eye on her. Since they were already keeping an eye on my placenta due to placenta previa, it wasn’t much of a big deal. Then one day my doctor casually told me that she was IUGR and sometimes that meant having the baby as early as 28 weeks because they tend to thrive better outside of the uterus at a certain point. Scary stuff. Thankfully my doctor was so laid back and chill that I didn’t have a major panic attack, but I was worried. I kept wondering what the heck IUGR was? According to the American Pregnancy Association:

The most common definition of intrauterine growth restriction (IUGR) is a fetal weight that is below the 10th percentile for gestational age as determined through an ultrasound. This can also be called small-for gestational age (SGA) or fetal growth restriction.

There is no one solid thing that accounts for IUGR, but the American Pregnancy Association lists these as conditions that could put one at greater risk factors:

The thing is, I had none of this at the time. However, during my pregnancy I went from having low blood pressure to having preeclampsia, and when Isabella was born we found out that she had a very small placenta.

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I’ll never forget looking at her wrinkly skin and tiny 4lb frame. I knew in my head that we were blessed. Yes, there were other babies much smaller and yes, she was healthy except for her size, but man. This was my baby and I felt guilty for my baby that was in my body being so tiny. Did I not eat enough protein? Was there something else I could’ve done to help her? I was crazy in denial about her size while pregnant. This kid moved so much and I could see her butt shifting across my belly when she moved. I thought she couldn’t possibly be as tiny as they said she was and ultrasound techs are often wrong, right? Not in this case.

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Because she was able to breathe on her own and her blood sugar and body temperature were fine, she only stayed in the NICU for 1 week. Our goal after that was just helping her gain weight. When I was pregnant with her she went from the 2nd percentile, to the 5th, then finally the 8th. Today she is in the 12th percentile, so still very tiny for her age. It no longer kills me on the inside when someone makes a remark about how tiny she is, but in the beginning it crushed me. And sometimes I’m still sad that she looks like a 2 month old when she’s actually 5 months old, but what can I do? We feed her when she’s hungry, giving her an extra half teaspoon of formula with every bottle (per the pediatricians instructions) and we wait. I’m apart of some wonderful IUGR communities on facebook and one thing I know is that you can’t predict how your child is going to turn out in a few months, not even in a few years. Everyone’s IUGR baby is different. Some of them stay tiny forever, others have mental delays. Some are normal on the charts now and are doing exceptionally well. All we can do is pray and try to help her reach her full potential as best we can. I can say that Isabella is passing every test and meeting every milestone, even exceeding some of them (rolling over at 2.5 weeks? Check!). Today she is fascinated with trying to dance like her big sister. I am beyond thankful for her progress. Every time I get sad it is ushered out by all the thankfulness I feel.

For more information on IUGR Please visit the American Pregnancy Association
For support wth your IUGR diagnosis you can join this awesome facebook group.
To keep up with my tribe, please follow me on instagram and facebook.

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