Things That Make You Go HMM…..
Three Weeks Ago…
Three weeks ago Fabi was brought to my clinic. Her mother has a learning disability and was completely overwhelmed. It was very clear this mother loved her baby and was doing all that she knew to do… she just really didn’t know/understand/have the resources to care for her baby.
Fabi was lethargic. She could not hold up her head. Her eyes would not track my finger. She did not reach for anything. We started her on formula – believing it was simply a malnutrition issue.
Two Weeks Ago…
She came back for her follow-up visit and the baby was very alert! She was reaching for my finger and tracking every movement in the clinic. So we gave her formula again. She’s 7 pounds. Perfect size for a cute little 2-month old baby! Yeah we win she’s going to be okay!
This Week…
This week she came back. The mother had been given enough formula to last her two weeks but she came back less than 4 days later. She said she was out of milk. She said the baby was constantly throwing it up. A conversation exploded in the waiting room where the patients/people waiting to be seen – began making fun of the mother. To the point that now the mother is sobbing.
We also got confirmation of a rumor about little Fabi. Fabi is not a perfect little 2-month old. NO. Fabi is 9 months old – born in May of last year.
WHAT? Can’t be right.
Nope. That’s right.
This perfectly proportioned – seemingly perfect little newborn baby – has only grown about 2 inches in 9 months. I feel like if she was born a decade ago we’d be putting her in the circus and you’d be paying a dollar to see her!
As many of you know – I’ve had over 17 children pass through my home – needing extra medical attention. All of the came from my clinic. Some stayed for a few weeks, some months, some years, and 4 I call my own! I have seen severely malnourished/failure to thrive babies. Gigi was 2 years old and 7 pounds. But her arms, head, & legs grew. Mikela was 10 months old and 4 pounds…and she measured 10 months old.
This little baby is simply not growing. She doesn’t show any signs of typical dwarfism that we can tell. So on Monday we brought Fabi home with us from the clinic so I could just monitor what she does all day. How much does she sleep? How much does she drink? Can she sit or roll over.
I still have some baby things from Isebelle…..which was ultimately from Asher/Levi. It’s not like I can go to Walmart here. But I found Asher’s pacifier that he took until he was 3. I have no idea why I saved it but we found it in a tub with their old clothes and baby items. We also found his picture with that same pacifier!! SO I cleaned that sucker off and BOOM – Fabi is hooked!
Here’s what I’ve learned…..
1) Our kids love babies! I can’t believe how much Gabriel and Asher fight to hold her.
2) Having Chronic Insomnia is really an asset when monitoring a baby at night…. just don’t take a 5-hour energy when you really don’t need it…..makes for a jittery/miserable day.
3) I forgot how much I love the smell of babies and how good it is to hold something small that doesn’t bark or talk back!
4) I forgot how much I love my job…. putting my medical thinking cap on – – measuring inputs/outputs & sleep/activity…..trying to find ways to help little ones thrive regardless of their disability.
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Here’s what I have tracked/done….
Day 1
She only slept 3 hours total. She only drank a total of 12 ounces of formula…no more than 1 ounce at a time about every 85 minutes. She did not have a wet diaper until 16 hours after she was in my care. She’s not a fussy baby. She keeps her knees bent and her arms tucked close to her. She wouldn’t stretch her legs out…she won’t put her feet down for you to try and have her stand. She cannot sit by herself. She cannot roll over. But she’s actively watching everything around her. In fact she’s actually glued to the TV already!! LOL! AND SHE LOVES THAT PACIFIER!!
Day 2
Now drinking 2 ounces per sitting but still only 12 ounces for the whole day. When swaddled up & with a pacifier – BINGO – baby slept 14 hours this day. She’s now passing stools & we’re regularly changing wet diapers. I spent 15 minutes – 4 times a day – stretching her legs.
Day 3
Now drinking 3 ounces per sitting….but still on track for 12-13 ounces for the day thus far. Spending 15 minutes – 4-5 times a day helping her sit on her own. AND she’s starting to do it some! 🙂 Her sleeping is more balanced today. AND she’s stretching her legs out now all on her own.
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I’ve contacted a few doctors who are trying to help me diagnose her – she just doesn’t fit any typical case they’ve seen! Please if you know anyone who could help – share the story! We’re driving ourselves nuts trying to research it online.
Just like any child we’ve taken in…. I don’t know exactly how long she’ll stay…. sort of depends on her progress and the mom’s understanding of how to care for her. BUT – we are excited to help her thrive any way we can.
Hi Jody! My name is Beth Cree – my sweet Lexie visited your family on a mission trip in April of last year. Marla tagged me about this sweet baby girl! I have been a special instructor for infants/toddlers with special needs for 22 years. I’m not a doctor – I’ve just seen a lot. I have so many thoughts/questions. Is she spitting up large amounts after feedings – I was wondering about pyloric stenosis. I wondered if the issue with throwing up after she was on formula could have been viral or if she has an ongoing issue. When you’re feeding Fabi, try not to let her try to eat for longer than 30 minutes at a time – she will burn too many calories. I would suggest more frequent feedings than you would typically do for another child. Obviously getting adequate sleep has helped her tremendously so keep up the swaddling!! I would continue with the stretches for her arm and leg muscles. Her growth will progress from her head downward so start with working on her head control and then work on getting her head off the floor (and eventually propping on her forearms) while she’s on her tummy. Improving that strength will help her to be more safe during feedings. I would do lots of infant massage (slow movement with firm pressure) to help with digestion, circulation, getting into deeper sleep patterns… I will be following your updates but you are always welcome to contact me directly as well! God bless, and I will be praying!
I made a comment above that will answer some of your questions.
Can you tell me more about the massages you do? She hates her belly – she doesn’t know what to do with her arms. I’ve been laying her on my chest and then slowly working her arms from being all bunched up to stretching them out. She still hates it though. I’m going to send you an email so you can tell me more about the massages you do. Thanks for reaching out to me!
Hi Jody,
Below are Dr. Jennifer Myhre’s recommendations. She is a paeds doctor here in Kenya and has seen lots of sick babies.
“If they are giving formula I hope they tested for HIV. Where is the mom? Is she pumping milk to keep up her supply? If head length and weight symmetrically small it is likely that the baby suffered from an intrauterine infection before birth or has a genetic syndrome rather than straight malnutrition.”
Well 12 to 13 oz a day for a 7 pound baby is about 3/4 of the minimal calories she would need. The pacifier and the bottle are possibly going to stop the baby from Breast feeding later. So if they are going to stick with formula she can mix it a little stronger to increase calories per volume (read can but if it says one scoop per ounce water make it 1 1/4 scoop). Also at 9 mo if no teeth and not growing she needs a thyroid test.”
God bless and praying for you and the baby!
Denise
Hey Denise!! I just sent you a message! Thank you for reaching out to me!!
As a pedi nurse of over 35 years, many with infants with feeding issues, I see several problems, but I would like to start at the beginning. In the USA, we check PKU’s on infants to assess the potential of many inborn errors of metabolism. These are problems with metabolizing elements of foods that are given. Any of these could cause a lack of growth. It is possible that she has one of those. In addition, your story does not say if the formula was powdered or liquid. If you gave the mother powdered, and she mixed it incorrectly, that could cause the baby to have massive diarrheal and vomiting. This could explain why the mother ran out so fast. I have had mothers do this, so I always ask them to show me how they mixed the formula. Infants need increased calories to grow, On average, a healthy baby needs approx. 100 calories per kilogram of weight per day to grow. In special cases, they need more. It is obvious this baby isn’t receiving enough calories and may be losing calories simply by the energy she is expending to eat. If a baby takes over 20 minutes to take a bottle, they use more calories than they get just in the process of eating. It may be that this child has already suffered great malnutrition through her early life and really needs specialized care to catch up. I am thankful she has you to watch over her. There are things you can do to increase the calories she takes in. That, to me, is the first place to start. I also wonder if she has the required fat pads on her cheeks to help her suck. Babies who are malnourished often lack these pads on their cheeks and require a special holding technique where your fingers become the support to their cheeks as they suck. That helps them take in a stronger suck.
Hey Debbie,
Thank you for reaching out to us. I have some more information to give you as you help me think through it… 🙂
She takes her bottle within 3-4 minutes. She doesn’t have a weak suck/swallow. BUT her belly is so small that she just can’t seem to hold more than 3 ounces…. at least not yet. We thought yesterday we had reached 3 ounces but she began to spit up so we had to slow back down.
Her head circumference is 36.4 cm
Her length is 19.4 inches
Weight is 7.2
We’ve been given her liquid Enfamil formula. But we’re almost out now. So we’re switching to powder now. She’s been taking a total of 240 calories/24-hours.