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Still Tiny Sadie


Every time I type out a post about Sadie and her petite size I promise it’s the last time I’ll talk about it. Not because I think I’m boring (come on, no one can insert “twat waffle” in a post about toddlers like I can) but because I feel lucky that Sadie has overcome so many challenges already so why focus on something so non-tragic – something quite possibly inconsequential to her overall well being?

Sadie just crossed the 27 pound mark and she’s four-years-old as of last month. She wears a size 2T and even some of those pants are a little long. She is still far below the height/weight chart. She’s doesn’t have a percent yet. I know it doesn’t matter what other people think but it’s still jarring for me when people exclaim, “Oh my God they’re twins? How can that be? She’s so little!” Or when people straight out ask me what’s wrong with her. Her preschool teacher told me that she forgets how tiny Sadie is until once in awhile she looks at her tiny starfish hand and realizes it’s no bigger than a baby’s.

Matilda continues to grow at a normal rate. She’s forty pounds and is literally heads and shoulders above her sis. So Sadie’s size still nags at me. How could it not? I’m her momma and if there’s something wrong I want to leave no stone unturned to make it right. I want to go all Lorenzo’s Oil on this thing. But I can’t. Because there’s really nothing I can do. Sadie eats completely typical for a four year old, she’s long since graduated the feeding tube.

After all my research, after speaking to tons of other parents of SGA (Small for Gestational Age) and IUGR (Intra Uterine Growth Restriction) kids, after all the intervention she’s had (PT, OT, speech, development, feeding, nutrition) I know that the only treatment is HGH (growth hormone). We just aren’t prepared to go there because there are too many unknowns and zero long term studies of the side effects of synthetic hormone -especially in the amount she would need (larger amounts because she isn’t hormone deficient -long story). Sweet Sadie has caught up in every other way besides height and weight. She’s feisty, hilarious, did I mention feisty?, and able to do most things Matilda can do. But not all.

She needs help getting up on most toilet seats (which may not seem like a big deal but if you’re four you may not always want someone helping you get up there), she’s not as strong as she should be because she doesn’t have the muscle mass of a typical child her age, She can’t wash her hands on her own in most sinks (at home we have a big step stool but how many other places have that?), but most disturbing, she’s treated by strangers like a baby. They assume she’s only about 18-months or 2 and talk down to her. Of course this isn’t a big deal now because I actually like to see their face when my four-year-old ball of attitude gets in their grill and gives them an “I’m a big girl. I’m four! I’m not a baby, asshole! (the asshole is implied)” But how will this be for her when she’s 12, 13, 14 or 40? Will she be treated differently? And if so, are we wrong for not giving her growth hormones? I don’t know. Probably not because I’m rarely wrong when I go with my gut. But what if I am?

Posted by Stefanie Wilder Taylor on December 28, 2011 6:33 pmUncategorized23 comments  

23 Comments

  1. Arnebya @whatnowandwhy said,

    She is gorgeous. The hormone being the only alternative, I fully understand your balking. I get the impression her feistiness will get her far, so just remember to help her assert herself and tell assuming people to kiss her ass (ass kissage fully implied). I can’t tell you not to worry; that’ll never stop, especially as Matilda continues to develop “on time.” It’s hard, sure, and not experiencing it myself, I have no “real” advice. Just do all that you possibly can to make things normal for her, let her know her size does not/will not define her as a person.
    Arnebya @whatnowandwhy´s last blog post ..Wordful Wednesday: Black Ken

    | December 28, 2011 @ 6:52 pm

  2. rebecca said,

    Sadie is gorgeous and a precious, delicate little snowflake that can cause as much destruction as the blizzard of the century. Sadie will be fine as long as she is encouraged to keep her tougher than dynamite attitude. And with a mom who writes snarky, wildly hilarious books, ……something tells me she’ll follow in her moms footsteps.

    Sadie is amazing and I think your decision to not give her hormones is a good one. As long as she continues to grow (however slowly as that may be) and thrive (which sounds like she’d doing exceptionally well) then that is the way she is going to be.

    I wish growth charts were followed (maybe not) when I was a child because I remember being in the third grade and being smaller and about the same size as most kindergartners.
    rebecca´s last blog post ..Surgery and Christmas

    | December 28, 2011 @ 7:11 pm

  3. robin said,

    Did you have to pin that mermaid costume? Our petite daughter had the same costume and it was pinned at every seam to get it to stay on. 😉

    I’ve been following Sadie’s weight story since the beginning, since it’s intertwined with our sobriety stories, and I am so proud for all that she has overcome. And you too! It’s hard to get a kid to eat when they don’t want to. It’s frustrating and surely wears you down. But she is growing so nicely and I love that she is spunky. :)

    My daughter (4.5 years) just went from the 3rd percentile in weight (all her life) to 16th percentile, and we were floored. I know all kids are different and my girl obviously isn’t a twin so this isn’t even the same as Sadie, but I have also worried since day 1 if she getting enough to eat and is she growing correctly, and I felt a sigh of relief at the doctor last week.

    Anyway, your daughters are all amazing. Love hearing about their growth! :)
    robin´s last blog post ..Christmas morning in pictures

    | December 28, 2011 @ 7:16 pm

  4. g davies said,

    She is perfect :) My neice was 24 lbs at her 4th bday, under height too, and is now, finally, growing and is in the 5th %ile for everything. My own son is 50% height but well below the charts in weight and I fuss like you do, over weight, and often get “aww how cute, is he what, 4 or 5 months old?” and he is a year. So I “get” you. But if you feel like you’re doing the right thing, you are. I’m rambling, boring you, so I’ll shut it.

    | December 28, 2011 @ 7:20 pm

  5. Trish said,

    Robbie is 26lb at 3.5. I am not as bad as I used to be but I still obsess about it. As a boy he’s just small… but as a man? it’s more. There are studies about preemies catching up later in life (even at adolescence) so I’m really hoping we fall into that.
    It’s hard to have faith, though.

    You may have already seen it, but maybe not and it would help?
    http://www.prematurity.org/child/growth/premie.html
    Trish´s last blog post ..Two steps back

    | December 28, 2011 @ 7:48 pm

  6. April said,

    hi

    | December 28, 2011 @ 7:51 pm

  7. April said,

    hi, my son is also 4, 27 pounds and tiny. he was 1lb 8oz at 32 weeks and has never completely caught up. we were not going to go down the growth hormone route but decided to in the end as he may not have reached 5 foot without and for a man being under 5 foot could be complicted. hes been on it now 11 weeks and is hungrier than ever – i hope more than anything he puts on a little weight. he has grown 3cm. its interseting reading about other children similar to my own. my daughter is of normal weight and lengh. xbest wishes

    | December 28, 2011 @ 7:55 pm

  8. Michelle said,

    Our “little” one will be 6 in February and is holding steady at 25 pounds. We have also decided against growth hormone treatments. We are teaching her that she is the perfect size God intended her to be!

    | December 28, 2011 @ 8:27 pm

  9. nicolette @ momnivore's dilemma said,

    When I started 1st grade…I was 30 lbs. I was always the small fry in my class.

    When I was 30, I learned I had celiac. I know now that there’s a connection between us failure to thrive kids and celiac/gluten….

    I’m sure you already researched that, but figured it was worth mentioning…

    :) Funny, I’m a pitbull like your daughter too. We have to compensate for our size. Even in my early 30s, people often mistake me for the nanny because I am so small.

    | December 28, 2011 @ 11:15 pm

  10. Kim said,

    I have never commented on one of your posts before but have been a long time reader (and also listen to your podcast) and my son is just like your Sadie. I, for one, was glad to read this post because you explained the struggles we have all gone through. The growth hormones? How short is *too* short? Will they ever just EAT for the love of God? Anyway, thanks for all of your stories, but particularly this one.

    | December 29, 2011 @ 1:16 am

  11. Amanda said,

    This post just twanged my heartstrings, much as all of your posts and podcasting do when you mention Sadie. My little girl is a Sadie too, and she has mild physical developmental delays — in her case muscle hypotonia, so she didn’t walk until she was almost 20 months old. We went through PT and behavioral therapy with her. Like yours, my Sadie is a ball of attitude with some unusual physical proportions — in her case, very, very tall and very gangly with long arms and limbs. Oh hey, and we live in the valley, too! Love your blog and TPE.

    | December 29, 2011 @ 3:16 am

  12. Ivy said,

    Oh Stefanie…I completely understand just about everything you are going through. As you know, we opted for the HGH with our little one. She is 5.5 now and is almost as tall as her twin sister. Still skinny but almost to the 50%. CAN YOU BELIEVE IT??? She is actually taller than some of her classmates. It probably helps that we live in Singapore, though. :) Her dr here said lets give her 6 more months and evaluate about taking her off of HGH to see if her body can manage growth on its own. If she can manage around the 25% I would be happy with that and her drs would to. Just wanted to let you know that if you ever decide to go the HGH route it may not necessarily mean until puberty. Our daughters have very similar medical history maybe Sadie just needs a jumpstart like Bryce did and her body will adjust. Happy New year!

    | December 29, 2011 @ 9:24 am

  13. Steph said,

    My daughter is also itty bitty (29lbs and she’ll be 4 in March). Last week she was belting out Frosty The Snowman in the grocery store. She was singing every verse very clearly – you know how you would expect an almost 4 year old to sing. And some lady who clearly thought that she was only 2 years old and comes up to me and tells me how verbal she is. I politely smiled and thanked her and laughed at her later. Yeah, she’s verbal alright.

    | December 29, 2011 @ 2:57 pm

  14. Kristin said,

    Man, is she adorable!

    I’m so glad to hear that she is doing well. I remember reading all about the feeding tube issues and how worried you guys were.

    I have very little personal experience with this and know nothing about growth hormones. The only thing I can offer was that I was best friends with a girl throughout high school who was 4’10”.

    Being this height was, and continues to be, a trial to her. People do treat you differently when you are so tiny. She felt patronized and condescended to on a daily basis. Some people will treat you like a cute little child well into adulthood when you are very short. Like many tiny people, her personality was enormous. I think she felt like she had to try harder than other people to be noticed for herself, not her height.

    It’s not like being short wrecked her life or anything, but it did make her life more difficult. She definitely always wanted to be taller.
    Kristin´s last blog post ..In Case of the Zombie Apocalypse…

    | December 30, 2011 @ 1:45 pm

  15. Elizabeth said,

    I’ve always heard preemies catch up to their peers around 8. Mine came at 32 weeks, so I heard that over and over again. Someone mentioned above about celiac. I did put my one son on GFCF and in one year he had a explosion in weight and height growth…if you’re really freaked, it may be worth exploring…

    She is just stunning and perfect anyway!
    Elizabeth´s last blog post ..Christmas Eve, A Decade Later

    | December 31, 2011 @ 4:20 am

  16. Lisa said,

    I’ve been reading your blog for about a year or so. I believe I came across it from Mommy wants Vodka or something similar. One of the things that drew me into your blog was your writing and how blessed you were to have your three girls, who are beautiful.

    I just wanted to comment on Sadie’s size. Have you ever considered getting in touch with an association called LPA? (Little People of America) The reason why I mention it, is that you might find other people that have similar issues that you are going through with Sadie and if for whatever reason Sadie doesn’t quite grow past 4’10”, she can have a lot of resources given to her, to help her in her life. I say this as I am also a member of LPA because I was born with a rare form of dwarfism called Diastrophic Dyplasia. It’s the same kind that Matt Roloff from TLC “Little People, Big World” show..only Matt is a giant compared to me. He’s 4’2″ and I stand at 3’6″ on a good day..I do sometimes think I am shrinking.

    Being a person of short stature at any age, will have it challenges, but it doesn’t mean it’s the end of the world or an fate worse than death or anything else you might want to compare it to. I’m not implying you have said or thought this, but sometimes people do think that about people of short stature.

    I too was often talked down to, and soon brought people up to speed when I learned how to stare them down and give them the old stink eye look. Along with a few choice words when the need arise.

    LPA also has a national convention each and every year, and during the convention they have an expo, where there are products offered to people of short stature to help make their lives easier. I myself have had trouble finding a toilet without needing help and I am 44. (But my husband gave me a present and bought me a child’s toilet for our master bedroom, so now every time I take a dump, I think of my husband..but in a good way honest!..but I digress)

    Sadie is such a beautiful child and so are your other two girls. Sadie will have good days and see that being little isn’t the worst thing in the world, and sometimes it will suck eggs, when she might be the last one picked on a team or certain boys might not like her as they do the taller ones. But all those experiences will help Sadie with her character and personality develop.

    I can’t really give any advice about growth hormones, but the people at LPA might be able to give you some insight that could help you with that decision. During each year’s National Convention there are a team of doctors you can see for free. You just have to register for the convention and make an appointment. The 2012 convention will be held in my home city and state Dallas, Texas. I believe it’s the 1st week in July.

    If your daughter is healthy, happy, safe, secure and has everything going for her, except maybe being the same size as her twin, then she’s very fortunate. I hope my post hasn’t been offensive or anything, as I only sincerely wish to offer help as I see you struggle as any mother would, when they look at their child and think they might have it hard at any point in their lives, especially due to being different from the so called normal. But what is normal when you really think about it? I don’t think there is such a thing really.

    Even though I am a person with dwarfism, I’ve been married for over 10 years, I have a beautiful 13 year old daughter, I’ve worked, graduated high school, went and dropped out of college (what can I say, I just hated school) and have traveled to many places, including to other countries. Remember: Good things come in small packages!

    I only wish you and your whole family the best!
    Lisa´s last blog post ..It’s going to be swell in 2012!

    | January 3, 2012 @ 2:29 am

  17. Karen said,

    I sure do wish I could put a photo up here for you! My daughter was born weighing 8pounds 7ounces…. and promptly began falling off the charts simply because she didnt want to eat much at one time. She was 17 pounds at one… and in 2nd grade she was STILL wearing 4T. Both of my kids were big babies at birth and neither of the two ever made it out of the 15th percentile on those damn charts in their whole lives so far. (Well… my son is 21 now and Im pretty sure he has exceeded the chart a bit what with all the partying.. but I digress….) But somewhere around puberty, Emily finally decided to EAT…. and BOY HOWDY, she will eat ANYTHING. And even though she is still a little short like her aunts on both sides) sitting right at or close to 5 feet tall, and just about to turn 17 years old, she is WELL over her needed weight!
    I cant speak for everyone, but I know she really loved being tiny, and really wishes she could be sitting there in those little cute clothes again! :-) If Sadie is healthy… I’d say let it roll! Its all good!
    Karen´s last blog post ..Possible Valentines Day QP date!

    | January 3, 2012 @ 12:57 pm

  18. The Woman Formerly Known As Beautiful said,

    My daughter Rowan also suffered from IUGR. She was a very skinny, tiny baby who scored a 3 on her APGAR, had hip dysplasia and was breech. WTF? Having said that she did make a very rapid recovery and I became worried she’d contribute to the National Obesity crisis when I had to lift her ALred Hitchcock cheeks up in order to clean out the mushrooms that were growing under her chin.

    I’m not a medical professional. Or any kind of professional, but it sounds to me like you are a diligent mommy leaving no stone unturned. Go easy on yourself. This child is obviously deeply loved and that will matter more than anything else in the end.

    | January 5, 2012 @ 7:16 pm

  19. Katie said,

    Sadie is beautiful.
    Growth charts/weight charts kinda suck. My daughter is really tall, but super skinny and the docs would sometimes be concerned. I was built the exact same way and she was eating well, so there was nothing to worry about. I know your daughter has a different story, but I still can’t stand growth charts.
    Everybody is different and that’s what makes us an individual. Think about it..being in recovery sometimes is hard and we go on. Our stories are usually rough ones and we lived to tell them. We go on to help others through sharing our struggles and how we got through them. So, Sadie will be a blessing to the world. If she’s like you, then she will turn adversity into a positive thing. If she can get through growing up small or going through HGH treatment, she will have an amazing story to tell and be able to help others when she gets older. I’m sure it’s hard to think in these terms, but she got the best mom to help her accomplish great things in the world while holding her head up high.
    Also, could you wait until she’s an adolescent to do HGH?

    | January 7, 2012 @ 6:05 pm

  20. laurie said,

    I have identical twins and one stopped growing in utero at 30 weeks. She was born smaller than her sister and although they are both tall for their age (30 months) the one that was growth restricted is much thinner. They eat the same, sleep the same, and yet she doesn’t gain the weight the way her sister does. People also give me the “they are twins?!” comment (yes assholes, I had them, I think I know). The smaller one is certainly showing herself to be quite assertive, creative, and much feistier than her sister! I think Sadie will be just fine even if she’s petite forever. And we just don’t know what affects the Growth Hormone will have in the future… I say if she’s healthy and happy, let nature run it’s course. :)

    | January 8, 2012 @ 1:43 am

  21. Julie said,

    Sadie is your clone. I can’t believe how much she looks like you. WOW!!! Remember, the best things come in small packages.

    | January 13, 2012 @ 10:39 pm

  22. Amy said,

    Hmmm… I am going to differ in my opinion from those above, but there are few things in medicine, especially in pediatrics, where all of the possible outcomes of any therapy are known. In fact, good luck finding a treatment where the Doc can give you a tally with percentages of all the pluses and minuses of any treatment.

    Perhaps Sadie is perfect and will be perfect as she is. Or maybe she would greatly benefit from the treatment.
    Have you sought out a few opinions from different docs?
    If you were her, what would you want your Mom to do?
    As someone posted above, must you decide now, or can you wait?

    I think you will make the best decision you can, either way. But if you are holding treatment to such a high standard, you will always opt “no thanks” to almost any and all medical treatments out there. There is a lot more unknown than known about just about everything in medicine.

    Which is worse – to try it and be worried that some harm comes to her by way of using HGH, or to not try based on a concern for the unknown and always wonder if she could have been “normal” height and weight.

    One is not necessarily worse than the other, but people usually feel better about “not” doing something, than doing it.

    I wish you the best of luck with your decision – at the end of the day you will do your best and make the right decision out of your love for her, and move forward from there.

    | January 18, 2012 @ 1:04 am

  23. Stefanie Wilder Taylor said,

    Amy, thank you for weighing in. I literally just had a wellness visit with her pediatrician on Friday and we discussed GH. I”m not opposed to giving GH if Sadie would benefit medically in some way. But if it’s strictly to add a couple of inches, I don’t think it’s worth the risk. My doc felt the exact same way. He pointed out that she’s not going to be 4’6″ (if she were going to be so short that it would affect her living a normal life this would not be a question) she’s going to be 4’11” (so far as her growth can be projected now) but she could still have a spurt at some point. We are not making any definitive decision right now as we can start GH anytime in the next few years.

    I don’t know what I would want my mom to do if I were her. Probably not give me a shot every day for years just to grow 2 extra inches. But who knows. In a few years she can tell me herself.

    | January 18, 2012 @ 1:12 am

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