FTT in 6 MO Special Needs DD - Mothering Forums

Forum Jump: 
 
Thread Tools
Old 08-10-2013, 01:38 PM - Thread Starter
 
DuchessTergie's Avatar
 
Join Date: Jun 2013
Posts: 328
Mentioned: 36 Post(s)
Tagged: 0 Thread(s)
Quoted: 59 Post(s)

Hi. I usually just read forums, looking for advice but never comment since I don't ever have any to give! :) But today is a good day to throw our story out and get some feedback. 

 

DD is 6 months old, with a diagnosed seizure disorder, which was diagnosed and treated at 6 weeks. She developed a feeding aversion right before 3 months and was hospitalized for FTT. The week there only resulted in frustration, but due to gavage feedings with expressed milk she gained weight appropriately. We decided to hospitalize her because she had lost head control and was losing muscle tone. We were terrified. The feedings restored her tone and head control! 

 

Oddly enough, the aversion ended there and she has been nursing well, though I do have to pump to maintain my supply because she only sticks around for one let-down per breast and is never interested in comfort nursing. She enjoys solids and eats animal foods and coconut oil, avocado, and papaya 1 or 2 x per day. She has been nursing well, with an on-target diaper count for both urine and stooling. I offer expressed milk in a spoon-tip bottle, but she rarely even drinks an ounce, so I assume she is satisfied. 

 

She receives early intervention services 1x per month by a special educator. She gives us hand-outs on feeding, language development, etc.... For our family I feel like this service has been minimal help because ther handouts are simply common sense activities that have already been happening in our home (ie. read to your baby, play finger games, prop them to sit, etc...) And though I didn't specialize in early childhood, I am a special educator as well....... 

 

Her 6 month well-baby was a real blow. I expected her to fall of the chart weight wise, but I was not expecting her to go a solid month without gaining even an ounce. She did however maintain her head circumference and shot up nearly an inch and a half. The doc was very concerned about her development and recommended more frequent services. I personally feel that she is within the normal parameters for development, though she is on the later side. She has only missed one milestone, and that is saying "goo" and any other type of babbling. She can sit unsupported briefly, but sometimes tips to the side without bracing her arms. She rolls both directions and pivots but does not scoot. She only shrieks occassionaly, but makes a wide range of gurgles and razzes. We personally find her to be very expressive. She is not interested in tiny objects yet and doesn't have a pincer grasp yet (which I would expect, it is a bit early in my view....). 

 

I don't know that I have any specific question but I am looking for thoughts. We have another weight check in 2 weeks. She's currently 12 lb 11 oz, 25.5 inches. She sleeps well most days and night, waking anywhere from 2-4 times in a night for a feeding. 

 

She has seen a GI specialist 2x, and we both agree she doesn't seem that she has any GI distress. We saw him last month, and at that time I was confident she was simply a small baby. But today I have no confidence. 

 

I suppose by bottom line is: I am comfortable with having a baby that is not on the charts, provided it is her unique pattern. I'm just not sure this is truly a unique pattern and not a real problem. I feel like I can't trust my instincts because I waver so much and am plagued by thoughts that it is somehow my faut for not feeing her enough.  

 

Thanks for listening to me vent, though we don't actually know one another.... 


Please ignore my spelling-- I think faster than I type.
DuchessTergie is online now  
Sponsored Links
Advertisement
 
Old 08-15-2013, 10:27 PM
 
sierramtngirl's Avatar
 
Join Date: Jun 2013
Location: In the mountains...
Posts: 349
Mentioned: 8 Post(s)
Tagged: 0 Thread(s)
Quoted: 21 Post(s)
Oh sweetie, hugs to you! Peds visits take the wind out of every mamas sail at one time or another.... I was having some challenges nursing (according to my ped at the time) my DD when she was about 4 months old. I met with a LC who gave me an article called "look at the baby, not at the scale" ( you should be able to google it) I found it to be immensely helpful and good for my confidence & would go back and read it anytime I needed to. And of course you know your kiddo better than anyone. You are parenting her the best way you know, and so what if she's not following the development charts exactly-perhaps she has her own agenda smile.gif I don't think that docs mean to be that way.... But I still leave always feeling unsettled. Best of luck to you and your LO and again, hugs!

Sierra, wife to DH , Mama to DD (2012) and DS(2014). In love with my family and hoping for inner .
sierramtngirl is offline  
Old 08-16-2013, 07:13 AM
 
melissa17s's Avatar
 
Join Date: Aug 2004
Posts: 2,139
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Maybe cross post in lactation because those mamas know a lot. I thought (it has been awhile since dc were that young) that the introduction of solids can slow growth. That was when my dc each took larger drops on the charts. Takes more food to equal high calories in milk. Dd had a problem eating solids because her gag reflex was in wrong spot. We worked with a speech pathologist. I wonder, if a speech pathologist might be a better fit for your dd's situation than early childhood person? Maybe unnecessary, though.
Is she still taking an aed for seizures? Some cause weight loss (others cause gain, but too much). My ds was at top of cuve as infant, but now in middle for age and small for boys in his peer group. His aed has not effected his weight- he is pretty thin, but eats all the time; he is 12 years, though.
melissa17s is offline  
Old 08-16-2013, 11:52 PM
 
Linda on the move's Avatar
 
Join Date: Jun 2005
Location: basking in the sunshine
Posts: 10,637
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 85 Post(s)
Quote:

Originally Posted by DuchessTergie View Post

 

I suppose by bottom line is: I am comfortable with having a baby that is not on the charts, provided it is her unique pattern. I'm just not sure this is truly a unique pattern and not a real problem. I feel like I can't trust my instincts because I waver so much and am plagued by thoughts that it is somehow my faut for not feeing her enough.  

 

 

 

hug2.gif  I wanted to send you a hug. I don't know anything about the challenges your sweet baby is experiencing and don't have any advice. I do know the feeling of doubting my instincts -- for a long time I felt like I didn't have ANY instincts!   I don't think this is your fault, I think that it just is what it is, and that being a good mother in this situation is continuing to consult experts and keep trying things, even though nothing is clear.

 

I hope that you get more guidance and peace about the situation.


but everything has pros and cons  shrug.gif

Linda on the move is online now  
Old 08-22-2013, 04:34 PM - Thread Starter
 
DuchessTergie's Avatar
 
Join Date: Jun 2013
Posts: 328
Mentioned: 36 Post(s)
Tagged: 0 Thread(s)
Quoted: 59 Post(s)

Yes! Will do. Thanks for the tip. My girl seems sparkly and happy but we're heading into our 6th week with no weight gain........


Please ignore my spelling-- I think faster than I type.
DuchessTergie is online now  
 
User Tag List

Thread Tools


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off