Since Scarlette has been home from the NICU I can think of exactly three times when I’ve shed tears over her delays. Once was when I was struggling to put down a feeding tube and drew back blood. Once was when she was trying so hard to grab for a toy during a physical therapy session and it broke my heart that her body just couldn’t do it. And the other was the day my best friend gave her little boy a peanut butter and jelly sandwich.
Four little triangles in chubby fingers did me in.
“There’s something wrong with Scarlette, Nat. And I have no idea what it is.”
Around the time Scarlette turned 15 months old I started to notice she was having difficulty eating. I was also noticing a few quirky things about her personality, like the fact that she refused to touch stuffed animals or wouldn’t wear denim.
(Some of y’all asked for an update on her diet/development and this is it- but it got really long! Please click continue if you want to read all about medical/sensory stuff. If not, come back tomorrow when I tell you a funny story about my neighbors 
)
Eating has never looked “normal” for Scarlette. She spent almost four months of her life on total parenteral nutrition (TPN) which is when nutrients and vitamins are delivered intravenously because a person can’t have any other from of nutrition such as breastmilk or formula. She moved from there to a feeding tube and an amino-acid based formula because of a milk protein intolerance (MPI) which meant she couldn’t have breastmilk or regular formula.
Because she didn’t learn to suck/swallow/breathe and digest like most babies, it took a long time for her to learn to drink from a bottle. And since her milestones are measured by her adjusted age plus the fact that she was delayed by her feeding tube, it took a very long time to introduce solids and she was about thirteen months old before we started trying things other than purees.
At 15 months we got the okay to try and introduce dairy slowly over the period of a month to see if she had outgrown her MPI. And y’all, she had. I can’t tell you how much we were rejoicing, not only because I didn’t want her to have to deal with a dairy allergy but also because her prescription formula cost about $50 per can. PER CAN. And we live in a state where it wasn’t covered by our insurance *faint*
But along with the good news is when I started noticing that she wasn’t tolerating any foods other than purees. It took six solid weeks to convince her to put a Puff in her mouth and then she choked and gagged on it. Which took me aback because Puffs? They dissolve. I tried making her purees a little chunkier. She gagged and made herself vomit. Then I thought maybe i wasn’t doing a good job of making her food so I went to the store and bought one of each type of baby food in stage 2 and 2.5 and she gagged her way through all of them. I bought yogurt melts and she gagged. And so on.
I also noticed that she wouldn’t touch any of her food. She didn’t stick her hands in her food and get messy. She wouldn’t pick up anything and put it in her mouth. She wouldn’t let me put anything in her mouth with my fingers. FORGET about brushing that baby’s teeth unless you had a death wish.
After talking to her doctors and her early intervention team, we had another evaluation done and found out that Scarlette’s eating problems are twofold. One: she didn’t know how to chew. She was just sucking her food the way you drink from a bottle and thus, gagging. Two: she has some sensory issues, especially as it relates to oral aversion.
At one point in her little life she had three different tubes going down her throat (vent, feeding, replogle) so she has a bad association with things being put in her mouth. In addition to that, she had deep grooves in her gums and the roof of her mouth, cut in by the tubes. Food gets caught in those grooves and causes her to gag. Which in turn scares her so that she doesn’t want to eat.
On top of all of THAT, her doctors were worried about her weight gain, or lack thereof. She is measured against a growth curve for 25-week preemies and still falling short. Which I think has more to do with the fact that she is my offspring and I am a grown woman with the body of a seventh grader. (Fine, a fifth grader. Whatever.)
We’ve been doing 2x a week therapy for a few months now. She has regular feeding/speech therapy on Tuesdays where we work on her chewing. We’ve come a long, long way and she’s now able to eat Cheerios and things like french toast and peas. At 18 months old she successfully ate her first biter biscuit.
On Thursdays we have sensory therapy. I’ll be honest when I tell you that the sensory diagnosis upset me. Frightened me is probably a more apt description of my feelings. I didn’t want her to have a hard time navigating the world. I’ve always known that cerebral palsy and autism were two of the things her team were watching for and I’d love her no less if we’re handed a diagnosis but you still hope you won’t get one. We’re no longer worried about CP and her team says they think her sensory issues are all we are going to see.
After testing we discovered that she doesn’t like the feeling of anything overly soft like blankets or stuffed animals. She’s a hard plastic girl. She doesn’t like dirty hands. If you happen upon us playing in the backyard, you’ll hear a lot of “It’s okay for our hands to be messy. It’s okay that there is dirt on our hands. We’re playing outside.” as you see her frantically waving her hands at me and signing “hurt” in hopes that I’ll wipe the dirt off.
Finger painting is a ton of fun around here, as it involves her sticking her hands in the paint, looking at them and then frantically trying to wipe it off in her hair. (Actually, it is kind of fun for me because c’mon. That’s just cute.)
She also doesn’t like to touch any food that is messy. I count it HUGE progress that she will now put things like peas and cheerios and bread in her mouth. Last week she touched a banana and I practically threw a party. This week she started eating some breaded salmon bites and I’m all PRAISE THE LORD AND PASS THE AMMUNITION! She refuses to feed herself with a spoon still because she has such an aversion to putting things in her mouth.
It’s frustrating. It’s frustrating because feeding therapy isn’t just a twice a week thing, it’s an every meal sort of thing.
It’s frustrating because her therapy involves five meals a day for her and that is that many times a day that I’m trying to convince her to do something that she doesn’t want to do. Scarlette is stubborn and I love that about her. I think that and the good Lord saved her life.
It’s frustrating because her weight gain is so important and yet she doesn’t always want to eat. So my day is spent sneaking purees into her french toast and blending up smoothies full of avocados and holding my breath each time we go for weight check.
But it’s also okay. Okay because we’re making really great progress.
And okay because of all of the possible outcomes we have faced, this is small. This is do-able. This is hard right now but this won’t be hard forever.
So she is 19 months old and her feeding skills scored at the level of a ten month old.
BUT.
Her language skills? Y’all, they were so good. They measure her against her adjusted age of 15.5 months but she surpassed even her actual age when they assessed her verbal development. She can say words and point out letters and when she’s tired she brings me her pacifier, lays her head against my leg and says “Ni Ni Mama”
She graduated from physical therapy and now she’s running through the yard or climbing up her play set or trying to do a somersault. (Note: I TOLD Jeff she wanted to be a gymnast rather than a tennis player)
She weighs eighteen and a half pounds and while on the phone with my best friend this week we discovered that is the exact same weight as her six month old.
She is small but she is totally unstoppable.
About Kayla Aimee
Hang in there and think of how far you have come already. She is a tough little girl and I think she will really surprise you as she gets older. She will catch up with kids her own age in due time and even be throwing them down in years to come! Best of luck!
Natalija
http://www.firstgenfam.blogspot.com
This made me cry. Because of the miracle that you have and because of the struggles you are facing with her. I’m so amazed at how far Scarlette has come in the last 19months. God is surely at work in your little girl. I know that God is not done with her yet and I am going to continue to finish your story to see where you guys are led.
I am continuing to keep you guys in my prayers…. 
amazing little girl, you must be really proud of her and of yourself
what a fighter!! love her updates! hang in there! she’ll pull through the eating & so will you!
KA:
I’ve posted on here before to tell you that I’m the mother of a 26-weeker. Reading about Scarlette’s accomplishments makes me cry, because I know how close you came to losing her. But, I also understand how hard each developmental milestone is when you’ve worked for months on it. My son is amazingly healthy given his start in life, but I’m left with nothing to say when another mom says how fast the first year of life went with her child. As a family, we work so hard for each of my son’s accomplishments. So, when I read your words, I feel both the pride and joy but also the frustration. I wish you, Jeff, and Scarlette nothing but the best! And thank you for sharing.
I know what you mean! She’s incredibly, miraculously healthy for where we started. But it does feel both fast and yet tediously slow at the same time!
I agree with this completely. At the age of 19 months, my 26 weeker was neither talking nor signing and she didn’t walk until her second birthday. She’s now a perfectly healthy, developmentally-appropriate 4 year old, but those first two years were SO slow. I dreaded every appointment, wondering what bad news was going to come up next.
Your sweet girl has come so far!
She’s the same weight (give or take a pound) as my grandson who is about her age. She looks incredibly healthy and she is brilliant. A friend’s son was diagnosed with similar sensory issues but not until he was ready to go to school. Kids do so well when they’re given the help they need. I love hearing her updates and I rejoice with you at every milestone. Praise the Lord for that stubborn streak – it’s served her well~
it just breaks my heart that you all are going through this, BUT it is just that, something that you can work with. It isn’t going to be easy because we still deal with food issues with Madison (and sensory issues too) but just keep swimming sweet – it is a day of celebration because you don’t have to worry about cerebral palsy anymore and that diagnosis is one that doesn’t go away. ever.
xoxo
Oh yes, I am so grateful for where we are. I have such an admiration for what you do daily, Mary.
She is beautiful and this is just one more challenge she is going to over come with great success. As you mentioned – this is small compared to the other incredible hurdles she has faced and won.
I cried this morning when I read about the children who so horribly abused that wonderful bus matron.
And I cried this afternoon – but this time I cried with joy. Joy that Scarlette has come so far, that she and her mamma (and her daddy, too) have the fightin’ spirit that baby needs to keep moving forward, joy that you can appreciate all she is, all she’s overcome and all she has the potential to achieve. I cried with joy, Kayla, because Scarlette is SO lucky to have you, and because I can tell from your posts that you are so happy to have her!!! I know that with God’s help she will be all she can be and more, and we’re going to be celebrating each and every accomplishment with you right here, every day!
you sound totally happy, friend! I am so happy that you finally have your girl, and will keep praying with you for her & her development. You’re both beautiful.
KA, I know how frustrating and STRESSFUL it can be when your child won’t eat. I had issues getting my son to eat/gain weight when he was a baby too. It certainly was not to the level that you are experiencing and he was not a preemie, nonetheless, he struggled to gain weight and it was so hard for me as a mother to enjoy mealtimes. (I actually hated them!) After lots of tests and a stay in the hospital he was labeled “Failure to Thrive.” Which is basically what they say when there is no “medical” reason for them not to gain weight. It was a horrible label for me as a parent because of course I felt like I was failing somehow. In his case he just burn off more calories than what he was willing to take in. So I too had to get creative with added calories.
Anyway…it was a much smaller problem than what you are facing with beautiful Scarlette. I just wanted you to know that I totally understand what you are going through. It sounds like she is on the upswing of improving and I have no doubt that she will overcome this hurdle just like she has so many already in her short life. She is lucky to have such an amazing MOM!
Sorry this got long!
P.S. My son is now 13 and I can barely afford the grocery bill.
She is incredibly tiny but on a side note my daughter was born at the end of February of 2011 and is only a few months younger than scarlette weighs 17.5 pounds. Some kids are just small. She also hates dirty hands and will whine until I clean the food,dirt or paint off of her. Scarlette is incredible and completely adorable
Congrats on her milestones as well as your frustrations…..you are doing things right as a mother! I so know your frustrations from the sensory side (although not as extreme but none the less has frustrated me so over the years). We just had my nephew stay with us and it reminded me of how far we have come. Both my son and my nephew have ADHD with sensory issues involved. I remember the day we actually got my son to leave some foods on his plate (well really the table) and still be able to eat other foods (1st grade). I would cheer when he tried new candy because he tried something new (he still only takes candy he likes from a pinata). We don’t buy certain clothing and he still doesn’t eat certain foods(age 12), and I laugh at the doctor that tells me I have one child that needs to gain weight and one that needs to lose weight (how do you do that in one household?), but I’m thankful for all of his accomplishments even if the rest of it drives me nuts!
Your positivity in dealing with these issues and the utter joy and delight you take in raising Scarlette shine through so you have no worries there. I was frustrated today as I put my 9 month old daughter to bed tonight because she has been whiny all day. And you have just given me a timely reminder that even on the most frustrating and disheartening of days, what a miracle little ones are. You are educating me on what it’s like to have a very premature baby, thank you for your disarming honesty.
While my son was not born prematurely, we faced similar issues in terms of food. He was labeled failure to thrive at one point, and we also attended therapy for awhile for oral aversion. Oh, and the whole teeth brushing thing. Like death. Kiddos are smart little buggers, and they pick up quickly when things hurt. Mine didn’t want to eat because of such bad acid reflux, and then we later found out he couldn’t tolerate gluten. It was a LONG three years because like you said, feeding therapy isn’t just a two day a week thing.
But, I am happy to report my little man is no longer in therapy, and he actually makes it on the growth chart. He is still tiny (just put a pair of 12-18 month shorts on him), but I no longer worry or fight with him a million times a day to get him to put food in his mouth.
Your beautiful daughter will get there one day soon, too.
It is amazing how much of a struggle Scarlette still has, I love reading updates and knowing slowly but surely she is working her way thru things.
On a side note, I need to thank you for your blog, it really helped me not to completely freak out when my daughter came 7 weeks early (and undersized) as the doctor was throwing out terms that scared the heck out of me. We then struggled with my daughter inhaling her milk (from me and a bottle) which caused her to be in the NICU even longer. It is funny how frustrating it can be to find the right amount of rice cereal to mix in with the milk and the correct nipple to actually get said milk out of bottle.
Wishing you the best of luck and that soon scarlette will be asking for crazy (normal) things like pizza
You know, you do a lot of things right as a mommy: (1) you are able to see your daughter as the incredible gift she is and you remind yourself of that all the time, (2) You may sometimes get frustrated and anxious, but you reach for a better, happier thought. You recognize that some things are a challenge now, but that they probably won’t always be. You worry that she’ll be hampered by “issues,” but you put it into perspective. (3) You remind yourself of her progress and don’t obsess over the ways she isn’t yet measuring up to other people’s babies. Keep doing all of those things. She’s going to be fine. Frankly, I think you’ve got a teeny tiny, super high IQ, adorable little firecracker on your hands. Holy cats, I can’t stand finger paint or chalk, and it sure hasn’t ruined my life! I have one son who hates anything the texture of noodles because it has always made him think of eating worms, and he’s going to get his policeman’s badge next Friday and is getting married in September. I have one child who can speak but doesn’t exercise the privilege any more than she absolutely has to, and she’s gotten through high school and is going on to college. Scarlette is so awesome I can hardly stand it. One of these days it will probably seem like a vague memory that she ever had eating issues. And if that’s not the case, it just won’t matter, because she’ll always be loved by her mom and dad and about a million and two other people who have followed her story. Keep counting your blessings–it’s the only way to go!
Oh my goodness… reading all of this brought tears to my eyes. We went through very similar feeding struggles with my youngest Dallin. He too went through feeding therapy. It was such a difficult and scary time. I
The good news is he got to a point where he would eat some things and I knew he wasn’t going to starve. : ) We are still working towards him eating more foods. He is now 7, and finally tried corn on the cob for the first time and actually liked it. He will have it every time we eat it. I am sure I sound silly, calling up my Mom and getting all excited because my 7 year old ate corn on the cob!! You have to celebrate the little victories, and I am sure there will be many for you and Scarlette!
Congratulations on the progress!! If it makes you feel any better, I have a 2 yr old, who weighed 19 lbs at her 18 mnth check up and has been 24 lbs since shortly before she turned 2 and has not gained any ( she turned 2 in April). My oldest had/has a taste/touch aversion (I think i do too). She hated….HATED…having her hands dirty and didn’t like to eat anything. Drove me crazy. We had to have a discussion with the lunch ladies at school because they made her so nervous about eating or not eating and she would get physically sick. The baby doesn’t mind getting dirty at all and loves to eat, but she doesn’t eat much. She also doesn’t sit still, ever. The fact that she is verbal will help so much with those other things. She will understand when you tell her what she needs to do, eventually. Love seeing the pictures and how far she has come
You made me tear up reading the peanut butter & jelly sentence. I am so proud of everything Nate can do, on his own time table, but when my friends with younger babies post or talk about “normal” things their baby is doing that Nate is far from, it always kinda stings at first, shameful as that is to say. I can relate to a lot of this. Nate had that make himself gag thing too, we had such a struggle with puffs, as we have with every single new food. He didn’t touch food himself until he was 11 or 12 months old. He’s not feeding himself, but he’ll touch it now. He had an ng tube for like 3 months, and then it was g-tube for a while (which he still has but we don’t use unless he’s sick). He didn’t have near the things going on in his mouth/throat as Scarlette, but he’s got some issues. Just yesterday we were at the hospital for his exam, and we got into it because he’s below the 5th percentile in height and weight. Just like you I’m thinking hellooooo, have you noticed me, mommy, down here? Yeah he got my genes, he was a preemie, this is not a shock. At least to me! At 4’10.5” tall myself, he seems like a perfectly reasonably sized 13 month old. :-X Anyway, I think Scarlette is doing amazingly well, and she has soaked up her super Scarlette powers from her tough mama. I think you are beyond awesome, and I hope you give yourself a whole bunch of credit, because this stuff isn’t easy. xo
I can’t decide what I’m more amazed by – Scarlette’s successes or your overwhelming faith & positivity! You’re both just beyond incredible in my book. Keep up the great attitude and hard work. It is gonna pay off in ways that will blow your mind.
I have a child with a sensory processing disorder. While hers didn’t involve feeding problems, we had many other challenges, including the diagnosis of Asperger’s. She’s 19 now and will start her sophomore year in college in the fall. So much of what she has accomplished has been because she was determined to overcome her challenges. I know Scarlette will, too! Hang in there, therapy works and she is strong (and so are you).
Thank you for the update! You are such an amazing mom – able to take the good with the bad and celebrate those small victories. Scarlette is beyond lucky to have you and her daddy taking care of her and keeping her in line.
Don’t feel bad when you get frustrated or upset… it doesn’t discount your love for her one bit. Go Scarlette Go!!!
Aww, Bless her heart. And yours too KA. You know, Scarlette probably gets frustrated some days too. Good thing she has a stubborn streak and lots of spunk!
I think it is going to serve her well. Thanks for sharing another update on your little miracle girl. xoxo
You and Scarlette are both nothing short of amazing! If this makes you feel better…my 23 month-old son is 21 pounds(and he wasn’t premature). We are in feeding therapy, as well. I, too am struggling with ideas of how to sneak in veggies and fruits.
TY! I was thinking I might post some recipes that have helped soon but really, making fruit smoothies w/greek yogurt + avocados has been a big help- she really loves them and doesn’t even notice the avocados!
My husband and I are both SLPs; in fact, he changed his first diapers in the NICU. Not his own diapers of course, the diapers of some poor little preemies who were probably all, “What is with this guy? Does he not know how to handle a 2 pound baby and a diaper?!?” This is the most authentic thing I have ever read in regards to feeding issues from the point of view of the parent and I think it should be required reading in all pediatric dysphagia classes. This is real stuff and it is hard stuff and it is daily stuff and it is not easy and nobody seems to get it unless they’ve been through it. Cheers to you and Scarlette for fighting the good feeding fight every day. It will get better.
Ideas for more things to scarlettes smoothies!
http://greenbabyguide.com/2007/12/30/fattening-baby-naturally/comment-page-1/#comment-14767
Thank you SO much for this!
Please don’t take this the wrong way because the good Lord knows you need some great accomplishments after Scarlette’s traumatic birth and the months after…I have been so sad/envoius(happy for you/Scarlette &sad for Connor/me) seeing the pics of her walking and reading what all she can say. I know it makes no sense. We finally got a diagnosis and like you said, we are going to love this baby no matter what. It’s just the daily struggles and the the uncertainty in the future that is so scary.
Connor FINALLY started taking steps at 19 months! Praise Jesus. He still isn’t talking though.
Please know that I am so happy that Scarlette is doing so well in these areas. I am praying she continues to improve with her feeding/sensory issues also.
I’m not sure why I felt the need to share this, but I’m posting it before I chicken out.
That should read…Praise Jesus he just started taking steps! He still isn’t talking though. Not Praise Jesus he still isn’t talking.
I am so sorry this is so hard for you guys. Because I have lots of kids and 2 with different types of feeding and sensory issues, I feel confident in saying, “this too shall pass”. One day, when Scarlett is 10 or 11 you will look back and think, wow i can’t believe how worried I was back then. My daughter was born with a cleft and after 4 painful surgeries, choking at every feeding and having countless things put into her mouth against her will, she was done. By 10 months she had a very narrow list of things she would allow to pass her lips. It took daily effort for months and months to see any progress. Thank God she wasn’t my first child or I would have worried myself into insanity. Now she’s 3 and a half. She is still tiny, 28 pounds when her baby brother is 21 at 8 months. BUT, she eats everything, and enjoys it, although I admit I still bribe her with popsicles occasionally.
Your baby is such a gorgeous wee thing and you are doing a fantastic job. Hopefully it is only a matter of time before she starts to enjoy eating!
She is so sweet – we love your pictures! My daughters softball teammate was a 26 week premie.i was telling her mom about y’all the other day (I’ve shared with you about Kendall before, and vice versa), and they were in quarantine for two years! Look how far you’ve come, and remember what a great advocate you have always been for Scarlette! They don’t call them “baby steps” for nothing”. I’m sure it is beyond exhausting to deal with scary issues daily, but you’re doing a fantastic job – she’s going to probably be taller than you – my sister has 2 kids. Her boy has always been off growth charts – he’s almost 5 feet and 9 Years old, but her girl is only 29 pounds and constantly in the 5th percentile for height and weight. My brother-in-law is 6’4″. As long as Scarlette keeps making forward progress, you’re okay. You’re lucky she can be around other kids, maybe that will help her even more. Hang in, Mama, you’re gonna make it!
My son was born full-term, but with lots of GI health issues that have made his journey with food so difficult! I can totally relate to the frustration and sadness that comes with watching your baby vomit up food that a “typical” kid would be loving. No one believed me when I said that my child would choke on a cheerio or a puff (he did), vomit up most meals (he did), or that my 3 year old would refuse a popsicle or a gummy bear or apple juice (he does). It’s not as simple as “offer it 20 times”. Our kids have very strong memory connections between food, fear, and feeling ill. BUT, but but but….your sweet girl is a fighter, and YOU are a fighter. She will learn, she will grow, and she will change every day. I know this because I just sent my “non-eater” off to his very first day of “big kid preschool”….the kind where he eats lunch THERE. I cried while I packed his lunch, and I wrote this imaginary letter http://mamabythebay.com/2012/06/17/feed-with-love/ to his preschool teachers. Your little girl will be eating out in the world too someday soon. Thank you for sharing her journey, and encouraging us with your strength!
Thank you for sharing your family’s struggle with sensory issues. My daughter, now 9, was dx with SPD at about 2.5 and, though her sensory issues are very different than Scarlette’s, we still struggle everyday with her issues. We celebrate the small victories daily and when the huge accomplishments happen years after her friends have achieved them, we make a gigantic deal out of them. She just learned how to ride a two-wheeler in April at age 9. We couldn’t be more proud since she tried so hard for so long and never gave up. The other day at diving class, she backflopped so hard it made her vomit. She backed off that dive and went back to basics, but didn’t quit the class. It’s the small victories…
Aw Kayla, being a mom is beautiful but so frustrating sometimes. It really will work out for you, the progress beautiful little Scarlette has made, isn’t it just unbelievable? If you look at her gorgeous little face and the fun little personality that she has, it would be very hard to believe that just a while ago she was a tiny 1 pounder. She will get there. Just hang in there.
I’ve been reading your blog for a while and our babies were due around the same time. My heart broke when I read about Scarlette’s early arrival but I was ecstatic to see that she fought the odds and made it home with you guys. My little one is now 16 months old, and quite a terrible eater too. I know its not the same thing because of the issues Scarlette has already faced, but I can feel for you. When your baby doesn’t eat even though you know how much she needs that nutrition, its terribly frustrating! Sending love and prayers your way, may this pass soon!
I’m a preemie mama as well (26 weeker) we spent 80 days in the NICU. Olivia is 13 months old now and is starting to catch up but I understand the tears you have shed!! It looks likes Scarlette is doing great! I’m new to your blog, your daughter is beautiful!!
Thanks
I’m glad Olivia is doing well, it’s a tough stretch for sure!
Kayla ~
I can completely relate to what you are going through… it isn’t always easy and it is at times more than frustrating. What I can tell you is, it gets better, promise. Our son is a 30 week preemie who faced similar issues with feeding, swallowing, textures and sensory integration. We took a similar path of therapy multiple times per week and integrating what we learned into our daily lives… making each day a learning experience. After some time passed, he figured it out. Take it a day at a time, celebrate the successes, and you’ll get there. We also noticed that the closer he got to his 2nd birthday he really seemed to take off in development. Hang in there momma! and keep up the good work! She’s a lucky girl to have you.
thanks so much for the encouragement
I totally appreciate hearing from mamas who have been there!