9 months old

Emma turned nine months old yesterday, and I would like someone to tell me where the time has gone. Today she will get weighed by the visiting nurse. She hasn't been "officially" weighed for about four weeks now. I am looking forward to seeing what this number is that we've been following so closely. I am a technical person and love working with numbers, so it is odd to me that this number, the pounds and ounces of my child, is the number that has influenced so much of my life over the last nine months. I even have a spreadsheet with her weights charted over the last few months. Obsessive? No, I think this is just my inner geek coming out in the form of the need to make a spreadsheet for anything and everything.

She is still eating every three hours. I recently read that 70% of babies sleep through the night by the 9 month mark. Emma would sleep longer if she could, but we have to wake her up every three hours (three hours from start feed time to start feed time). I have no idea how long she would sleep if we let her. A full night's sleep is becoming a distant memory to me. There are times when we do fall behind on her feedings and these usually occur during the night or when go places. I certainly can't say that we've never fell behind on her feedings for the day, but she does get her 8 feedings per day in probably 88% of the time.

I think Emma has been making good progress over the last couple months. I am equally concerned for her weight as I am for her development. She is behind in her developmental age. She cannot sit unsupported, she cannot roll from her back to tummy, etc.

A little summary for those just chiming in and may not have been following since this blogs conception. Emma is classified as a "failure to thrive" baby, and has a mickey button for assistance with eating. She has not been diagnosed with anything, although she has had numerous blood tests, urine and stool tests, quick scan MRI, head ultrasound, full MRI, EEG, EKG, upper GI test, a chromosonal microarray test, and an EMG. I may be forgetting something her, but, to summarize, she's had a lot of tests to try to figure out why she can't gain weight and why she doesn't want to eat. She's been seen by a GI specialist, speech therapists, physical therapists, genetics, nutritionist, metabolic neurologic, neurologists, and others. She is currently on medications for reflux and muscle relaxer.

8 Months Old

As noted in another posting, Emma got her Mickey button at 8 months old. This is more conventient than the tube, but is currently a bit pink/blistery/oozy. After talking to the nurse, it sounds like this is granulation tissue and is quite common. She suggested using triamcinolone creme to help reduce this.

While under sedation for the mickey button surgery, an EMG (electromyogram) test was conducted. This test evaluated the electrical activity in nerves and muscles to determine if there are abnormalities in the way nerves transmit impulses or to the muscles. Preliminary results from this test appear normal.


Her formula has changed to Pregestimil. According to the packaging and on-line information, "the fat blend in Pregestimil Lipil consists mostly of a special type of fat called "MCT oil," a "medium chail triglyceride oil." Enfamil's Pregestimil Lipil's unique formulation is designed for feeding babies with diseases or disorders that make it difficult for them to absorb the fat blend in most other formulas." She seems to be spitting up less and not quite as uncomfortable on this formula.

We have asked numerous times in the past whether Emma should change formulas and the answer was always to "just stay on what she's on". We asked about hypoallergenic formulas recently as we were wondering if she might have a protein sensitivity or a food allergy. The doctors don't seem to think she has a food allergy, but were agreeable to giving the hypoallergenic formula a try. It appears to have decreased her overall volume of spit ups. She does still have one or two big spit ups a day (and additional minor ones). She still sometimes get uncomfortable, but this appears to be less in frequency and intensity. She still has her bad days, but overall we think the formula is more appealling to her sensitive tummy.


It has been two weeks since her last weight check in. At that time she weighed in at 13 pounds, 9 ounces. She had a very good growth rate at her last check in (about an ounce per day). This is a typical growth rate, but atypical for Emma. Her growth rate has typically been much less than this. I am looking forward to see what she will weigh at her next weigh in.

Welcome To Holland by Emily Perl Kingsley

Although Emma has not been diagnosed with a disability, sometimes I feel like I'm in Holland...

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

Mickey Button

On Thursday Emma got her mickey button. The procedure was relatively short. We had to wait almost an hour after the sedation wore off because as part of their protocol they check her oxygen levels afterwards and hers kept dipping below what they like to see for departure (90). This occured during her g-tube placement, so the nurse said that this may be "Emma's normal level". The number was dipping under 90, but she had normal coloring and wasn't discontent.



It has only been a short time since this surgery and all is going well. The biggest advantage of the mickey button over the peg tube is that we no longer have to deal with the ~10" tube that would get tucked into her diaper. She was starting to realize it was there and hold onto it during diaper changes, etc. There was always the fear of getting it yanked out.

A Day in the Life of Little e (7 months old)

I currently eat 8 times a day. I was eating 4 ounces per feeding but it just got increased to 4.5 ounces. My arching is better than when I was in the hospital in December, but it hasn't gone away. I get uncomfortable when I eat I sometimes get in the arching position. I also get into this position at other times in the day.

My development is behind. I can hold my head up for a little bit, but after a while it starts to flop backwards. I cannot sit up on my own. I can reach for toys but I do not pass them from one hand to the other. I can roll from my stomach to my side. I am content on my back and do not roll. I also do not crawl or creep. I do like to talk and am making different noises. I try to play as much as I can to work on my development, but I have to spend so much time eating and settling down after I eat. This really takes away from play time. I'm not sleeping through the night because my mom keeps waking me up to eat. Every three hours I have to eat. Sometimes I will get off schedule but then mom creeps up the following feedings (2 hours 45 minutes) to get me back on schedule.

Big C, little e

As you've probably figured out by now, the "little e" in the title of this blog is Emma.  She is classified as a failure to thrive baby, although I prefer to think of her as simply a baby who has difficulty gaining weight. So what, or whom, is "Big C". That would be Emma's big sister, Catie. Catie is four years older than Emma. The two were born around the same size, Catie weighing in at 7lb 8 oz and Emma at 7lb 6oz. As a baby, Catie was always well within the growth charts. She never had any trouble eating, and to this day is still a great eater.

G Tube Placement (5 months old)

The scheduled surgery for Emma's g-tube is slated for 9am on December 23. Emma is 5 months old. Emma cannot eat anything prior for a number of hours. On the positive side, this means a little sleep for mom. Unfortunately, she is unable to sleep, thinking about the day to come. Mom gets woken up at 8am by the nurse saying there is an 8am slot for Emma. No time to shower, mom changes out of her pajamas and off we go.

Self Conscious for Baby

Emma is too little to know, think, or care about what others think of her. So, as her mother, I take on that role. The few weeks after Emma was born and we were out in public, I used to relish in the comments from strangers, "oh, look at the baby... she's so little... ". A few months later, these comments start to get old. I remember when Emma was four, five, even six months old and people thinking she's a newborn. It was cute

A Little Background

We found out while I was in labor that Emma was breech. She had turned during the last week. When she was born, it literally looked like Emma was folded in half, with her feet up near her ears. This was a natural position for Emma for the first few weeks of her life. As I look back, I wish I had taken a picture of this for future scrapbooking. Gradually, her feet would come down to her toes.

Emma has never been a good eater. It took her about 3-4 weeks to get back up to her birth weight. She has always spit up frequently and gets uncomfortable while eating. She has never wanted to eat what she is supposed to.

Why a Blog?

I never thought I would be one to write a blog, but here I am. The goal of this blog is to, hopefully, reach out to others who have babies who are classified as "failure to thrive". I know there are others out there going through this, but sometimes it can feel like you are the only one. The sleepless nights, wondering when she's going to catch up to the other babies, the lack of answers after all the testing, and the day to day life of caring for a baby going through this can be stressful.

I hope to find others going through this or have gone through this. There are so many causes of failure to thrive and it is frustrating to not know why your baby can't eat what she should to gain the weight that other babies their age are gaining.