HI Csab. The problem with that though is if there is an underlying medical condition that can be treated, then she needs to have all the tests done, even though it would be breaking your heart to have to do it. I really hope that this works for her and that she is soon gaining weight nicely
Trillian - If she needs to have them done, then we will definately have them done, but only if it needs to be. The problem is the DR's have kept telling me that my bub could possibly have a chromosome problem, they were looking into Noonans syndrome. I kept telling them that she doesnt and that all of her features are from different parts of the family. They have been monitoring her since she was born. They have started to see that she doesnt have what they thought she did. I just dont want them using her as a guniea pig trying to find something wrong when their isnt iykwim.
She has always been a small bub, and takes forever to gain weight, but when she got very sick, she lost weight too quickly, so once she was recovering she had alot more weight to gain to get back to where she started before she got sick. So that took some time. They seem to keep forgetting that set back.
I have done everything the DR's have wanted in relation to her, as I want them to see for themselves how perfect she really is.
She is a happy little girl and does everything she is meant to for her age. I guess I just wish this would all end with them being happy with her for once. Ive seen her fight for life, and I have seen how scared she was of DR's/Nurses after that too. It took ages for her to start to relax around her pead too. I am so worried they will put the feeding tubes in, as it didnt do her any favours last time. She didnt gain any weight, and was craving her bottle and food. Her pead is also not wanting them to tube feed her.
Thankfully she has built up some fat on her thighs and she keeps rubbing her belly as her belly is a bit more chubbier too. So I really do hope this works.
Thanks..... hugs
I was just wondering if V was considered SGA *Small for Gestational Age) or IUGR (Inuterine Growth Restriction) when she was born as I think she was around the same size as DD (2350grams), but DD was a 33 weeker so she was within the average weight for her gestation? The reason why I am asking is that I was chatting with one of my prem friends (IRL) and her little boy was IUGR. They have recently gone to see a new Paed as they felt they weren't connecting with their old one and when he did an assessment on LG, and he looked at his weight (less than 7kg at over 2 years of age), eating habits etc (he pretty much only eats mushie foods), and what he actually said that SGA and IUGR bubs actually have less cells within their bodies when they are born. This means that there are less cells devoted to putting on fat, so that it is unlikely that he will ever be a big boy, and that not to worry about what types of food he is eating, that as he gets older you will be able to reason and discuss with him about different foods and textures, and introduce them that way.
I am not sure if that is relevant for you and V or not but it was really interesting information, and I have quite a few friends who have SGA and IUGR bubs and I don't know any of them that are actually big bubbs/toddlers now, they are all quite petite, so the information our friends new Paed disucssed seems to make sense to me.
She sounds like she is doing wonderfully with her milestones, which is a great sign. Quick weight loss when sick is also so disheartening, after waiting so long for that weight to go on and to see it just go so quickly is heartbreaking. It took N quite a while to catch hers back up from her first hosy stay, we were lucky that her other visits and stays she wasn't as ill, we were treating her quicker and the impact was less.
Thanks Beema, V was full term, by my dates she was born 9days early, but the hospital put her down as born 38weeks. They didnt class her as IUGR, they classed her a SGA. She was born 2380gms then dropped down to 2100gm while in hospital so dropped down from 5pd 2 ounce to 4pd 8oun and didnt reach her birth weight until she was 5wks 4days.
She had no fat what so ever on her body, so she more or less had to start from scratch and build her own fat stores.
We finally got her upto 5.3kg the day we had to admit her to hospital for bronchiolitis she was 8 1/2mths old and dropped back down to 4.8kg a week later, which is alot for a slow gainer to lose. Even on her discharge to all of their amazement she was still 4.8kg a week later.
So now 4mths on she is 5.9kg (her last weigh in was 2weeks ago) at the age of 1, which I would suspect she would have been at least 6.5kg (possibly a bit more as it took a while to get her back to normal after her hospital stay), if she didnt get sick the way she did.
I am glad your friend found a better pead, hearing it the way her pead explained to her does make sense. V will eat normal food, without them being all mushy, which there isnt a problem in that area, it is just the small amounts she will eat.
I am sorry you had to face the same sort of problem after N's first hospital stay, it is very disheartening.
You know it was the first time I had ever heard them mention Failure to thrive was during her hospital stay. Her pead never mentioned it at all, even though he was keeping a close eye on her weight etc since birth. Came as quite a shock to hear it like that, you know in those words.
Thanks for understanding, how I am feeling and for letting me know about your friends little one and their pead.
I hope little N is doing well.
V had a similar start to Nakita, with very slow weight gain, she hadn't put on any weight when we were discharged, she was 2180 on dishcharge, a week later 2170, but lucky enough that in the third week she put on some weight so we were ok to keep going, she took 4 weeks to hit her birth weight so a bit quicker than V and things went along slowly until she was about 10 weeks then she started losing weight, so it was at that point we were "told" to use formula top ups, I am in two minds as to whether at the time this was the right thing to do or not, as there were a number of factors that resulted in the weight loss and I should have persevered for another week to overcome those issues and see how we went, especially after doing quite a bit of research afterwards.
I know what it is like having a baby with no fat stores at all, Nakita was all skin and bones as well, she has rolls of skin, and her bum was just a series of creases (like lots of bum cracks ), not even a little bit round or plumb. But as she was my first I knew she was small but didn't really realise how skinny until I was with other mums at a mums group and I saw chub next to my very skinny minny . She was 45.5cm at birth so quite tall, so that didn't help the "look" of her.
I completely understand the word FTT as well, that is what we encountered at 10 weeks, she was almost 1kg under the 3rd%ile. Hearing those words is like a knife through your heart, using the word "failure" to a mother is the most horific word to hear, I felt like I had failed.
I would have to agree that inserting a NGT may be a step backwards, with quite a few tube fed bub friends I have seen the impact that the tube has, and when you think about it, it would be horrible having a tube tickling the back of your throat 24/7 trying to swallow food, milk etc would be very uncomfortable, and I have seen bubs go backwards being on tube feeds.
A mum from mothers group had a little girl at 36 weeks who was SGA she was just on 2kg and she is a very petit little thing, and I find it interesting that her Paed like yours looked at the whole picture of her size, her growth and development milestones and even though she was quite tiny, similar to V, he never mentioned FTT as it was "normal" for her.
Have they recommended fattening up her meals, with butter, cream etc, to get extra fats into her that way as well?
N is doing well, when she started solids at 6 months she just started putting on weight, it was like a light turned on and she was off, we have been lucky in a few ways that she wasn't an active bub, the hypermobility meant she didn't roll until 12 months and has only just started crawling in the last few weeks, so we got extra time for her to chub up, if she was an early mover it might have been a different story, as when they are little and get moving they can move a lot quicker as they have less weight to shift and getting them to chub up while on the move can be even harder.
N lost 400 grams during her first stay, from loss to regaining back to her pre hospital weight it was 8 weeks. But at that stage she had enough chub for it to not be of a concern.
Sending you all the chubby vibes I can , I hope V doesn't need to go through too much testing
Oh hun, sending you lots of hugs . It sounds as though you are doing a wonderful job with your little girl . I can't imagine how stressful it must be to go through this over such a long period of time.
My DS was borderline IUGR, and borderline FTT for the first 4 months of his life. He was born at 35 weeks, so that complicated things a little bit in the early days. I found it to be so all-consuming, worrying about his weight and feeding all the time. For whatever reason, things picked up when he was about 4 months old (well, there were probably a few reasons, but I won't list them all here). The biggest factor we could find was when he was diagnosed as having cow's milk/soy/nut protein intolerances. The more he had of those proteins, the less weight he put on, and the more immune deficient he became. Especially past 12 months of age. Fortunately, it wasn't too long after that that he was diagnosed, and changing his diet made an enormous difference in many ways.
I'm not at all suggesting that this in any way relates to your lovely DD, just sharing my experience, and saying that sometimes there is often a reason for these things. Of course, figuring out what it is is the hard part. Sending you lots of strength and support as you continue this journey
They have told us to add butter/marg to everything she eats etc, but it is getting her to eat them. She is such a stubborn child too, if she doesnt want something she wont have it. She fights you, not to have it. So what are you to do.
As you mentioned once they start moving around its harder to put on the weight, V started crawling about a month before her last pead appt, but was commando crawling alittle before that. Which we were trying to get her to put more weight on before that happened. It certainly didnt help her last appt with her on the move, but her pead didnt take that into consideration either. You is flying around the house now, and is liking holding onto hands so she can walk, so it may not be all that long that she will be getting up walking.
With FTT, I felt the same, like I have failed her. It isnt a pleasant word to hear.
I too stopped BF at around 6wks with V as I started to feel as though maybe it was my milk not giving her what she needed to gain weight, but even when she was on formula, it didnt make much more of a difference. She also got constipated while on the formula and would scream and cry everytime she needed to do a number 2. I ended up changing her formula to Novalac constipation to help her out with that and it worked.
Was a bit worried about how she would cope with the change to cows milk, but she hasnt had a problem with it so seems good.
I am glad N is doing better with her weight gain, thats great. Your lucky she waited alittle bit before getting on the move. I was hoping V would gain abit of weight before she was more mobile, but at the same time I was worried that if she wasnt crawling at least then it would give the DR's something else to pick at with her. So I was in two frames of mind. V is a quiet little thing, very happy and loves her big bro's and sis's, she laughs at them all the time. She has the cutest little tantrum, when she wants to be picked up. She sits on the floor and lays her head down on the floor, with her arms laying flat, and whimpers then sits up with a sad face and waits for you to come and pick her up, if you dont come quick enough she repeats it. lol. Sounds like N has a similar temperment at V, its very girly. So cute. My other DD's would just yell the house down until they get what they want. Fingers crossed V doesnt follow their footsteps in that regard.
V and N did have a similar start didnt they. V was 2180gms at 2weeks old. She was 47cm long and a hc of 34cm when born.
As of 2weeks ago, she was 5.9kg, lgth: 65cm and HC: 43cm.
If you would believe it, they even had me worried that her head may not grow as her fontonell (soft spot) was too small, and they were saying that if her head didnt grow then they would be looking at doing surgery. So glad she proved them wrong with that too.
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), not even a little bit round or plumb. But as she was my first I knew she was small but didn't really realise how skinny until I was with other mums at a mums group and I saw chub next to my very skinny minny
. She was 45.5cm at birth so quite tall, so that didn't help the "look" of her.
. I can't imagine how stressful it must be to go through this over such a long period of time.
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