Need help and advice for our 11 week old with CF

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Helenlight

New member
Hi,
Our daughter has been diagnosed with CF (no bloodwork yet), and has been given Vit A,C, and D (E still to come), Sodium Chloride, and now the enzymes with apple sauce. She's also currently on Augmentin and I've added an infant-friendly pro-biotic.
We've started to get the hang of syringing all except the enzymes into her mouth bit by bit, in-between her crying, it's not very nice, but she won't take a bottle yet and I put her to the breast afterwards and she's happy enough. But now we have the enzymes as well and she's not interested in the apple sauce and seems to hate the feel of the gritty enzymes. She won't swallow it, so I have been putting the mixture on my nipple when she feeds. This seems somewhat successful in that she swallows some of it, but she still hates it every time and I don't like the idea of breastfeeding being traumatic for her, because it was her 'safe place' before- the place she can be comfortable and secure and is our bonding time.
I'm finding it really hard (I've been really strong so far, through her hospital stay at 5 weeks, the ongoing cough and vomiting that comes from it), it just seems to be one thing after another. My partner is really helpful, but it is getting to him too. It's just so hard to see our once happy, thriving daughter, not only become affected by the CF, but become sad too. How do you all cope?

Thanks xx
 
H

Helenlight

New member
Hi,
Our daughter has been diagnosed with CF (no bloodwork yet), and has been given Vit A,C, and D (E still to come), Sodium Chloride, and now the enzymes with apple sauce. She's also currently on Augmentin and I've added an infant-friendly pro-biotic.
We've started to get the hang of syringing all except the enzymes into her mouth bit by bit, in-between her crying, it's not very nice, but she won't take a bottle yet and I put her to the breast afterwards and she's happy enough. But now we have the enzymes as well and she's not interested in the apple sauce and seems to hate the feel of the gritty enzymes. She won't swallow it, so I have been putting the mixture on my nipple when she feeds. This seems somewhat successful in that she swallows some of it, but she still hates it every time and I don't like the idea of breastfeeding being traumatic for her, because it was her 'safe place' before- the place she can be comfortable and secure and is our bonding time.
I'm finding it really hard (I've been really strong so far, through her hospital stay at 5 weeks, the ongoing cough and vomiting that comes from it), it just seems to be one thing after another. My partner is really helpful, but it is getting to him too. It's just so hard to see our once happy, thriving daughter, not only become affected by the CF, but become sad too. How do you all cope?

Thanks xx
 
R

Ratatosk

Administrator
Staff member
DS hated applesauce, so we used baby food bananas. Was thicker and the enzyme beads seemed to stick better. So you could try a different baby food fruit.. We also used other fruits as well. Just not applesauce.

We used as flat of a baby spoon as possible -- tried a tongue depressor, but bumped the roof of his mouth once and he was NOT happy -- shoved the spoon in, followed by the bottle as QUICKLY as possible. I know one mom who did what your're doing, as well as another who just poured the beads in followed by bottle or breast.

DS was a horrible eater. The best times were when he was sleepy or sleeping as we were both more relaxed.

Eventually we got into a routine -- meds, cpt and nebs become second nature.

I seem to recall the augmentin did a number on DS' digestive tract, too -- more spit up than usual and really loose diaperss
 
R

Ratatosk

Administrator
Staff member
DS hated applesauce, so we used baby food bananas. Was thicker and the enzyme beads seemed to stick better. So you could try a different baby food fruit.. We also used other fruits as well. Just not applesauce.

We used as flat of a baby spoon as possible -- tried a tongue depressor, but bumped the roof of his mouth once and he was NOT happy -- shoved the spoon in, followed by the bottle as QUICKLY as possible. I know one mom who did what your're doing, as well as another who just poured the beads in followed by bottle or breast.

DS was a horrible eater. The best times were when he was sleepy or sleeping as we were both more relaxed.

Eventually we got into a routine -- meds, cpt and nebs become second nature.

I seem to recall the augmentin did a number on DS' digestive tract, too -- more spit up than usual and really loose diaperss
 
R

Rebjane

Super Moderator
Hi there!
Breastfeeding a baby can be hard, then throw in CF, enzymes, medications, chest PT; it's alot!

I breastfed my 2 children, first child no CF my daughter the second child has CF. I breastfed her for 3 1/2 years. She is 9 now.

This is what I would do with the enzymes. I would open the capsule into a little medicine cup(she took half a capsule) for each feeding. i would take my little pickie finger and wipe the side of her mouth to get it moist(of course with clean hands) then dip my finger in the medicine cup with the enzyme beads, coat my pinkie finger with about the half capsule amount and put in the back of her mouth. Then i would pop her on the breast,she would suck and the beads would swallow down. It took a while to get used to. Some enzymes would end up in the couch, in her ears, but most went down<img src="i/expressions/face-icon-small-smile.gif" border="0">. I did not use applesauce til she was about 6-7 months old with her enzymes. It's just what i did but the applesauce does make it easier; gives something for the enzymes to hold onto.
Also, you are NOT affecting your breastfeeding relationship with the enzymes. It is all your baby knows and that breastfeeding , skin time, warmth is very positive and comforting for you and and your baby. I always cherish that time I had with both my kids.....Just wanted to add that<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that helps!
 
R

Rebjane

Super Moderator
Hi there!
Breastfeeding a baby can be hard, then throw in CF, enzymes, medications, chest PT; it's alot!

I breastfed my 2 children, first child no CF my daughter the second child has CF. I breastfed her for 3 1/2 years. She is 9 now.

This is what I would do with the enzymes. I would open the capsule into a little medicine cup(she took half a capsule) for each feeding. i would take my little pickie finger and wipe the side of her mouth to get it moist(of course with clean hands) then dip my finger in the medicine cup with the enzyme beads, coat my pinkie finger with about the half capsule amount and put in the back of her mouth. Then i would pop her on the breast,she would suck and the beads would swallow down. It took a while to get used to. Some enzymes would end up in the couch, in her ears, but most went down<img src="i/expressions/face-icon-small-smile.gif" border="0">. I did not use applesauce til she was about 6-7 months old with her enzymes. It's just what i did but the applesauce does make it easier; gives something for the enzymes to hold onto.
Also, you are NOT affecting your breastfeeding relationship with the enzymes. It is all your baby knows and that breastfeeding , skin time, warmth is very positive and comforting for you and and your baby. I always cherish that time I had with both my kids.....Just wanted to add that<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that helps!
 
K

Kaethe108

Guest
You just need to find some liquid that she will like to swallow from a spoon and put in there the little "beads". For us it was some very sweet tasting medicine (juice) against air in the stomach. Tastes like banana. She will very fast get used to taking it from a spoon.
 
K

Kaethe108

Guest
You just need to find some liquid that she will like to swallow from a spoon and put in there the little "beads". For us it was some very sweet tasting medicine (juice) against air in the stomach. Tastes like banana. She will very fast get used to taking it from a spoon.
 
M

mummy09

New member
I had problems with getting her latched on even before her cf diagnosis at 3 weeks, so iI was pumping and giving it to her from a bottle. We also used applesauce it just takes time to get used. It does get better though the first 3 months were the hardest. At 18 months she started swallowing her pills by herself. The minereal mix I use to put a little in each bottle and she didnt notice. Goodluck
 
M

mummy09

New member
I had problems with getting her latched on even before her cf diagnosis at 3 weeks, so iI was pumping and giving it to her from a bottle. We also used applesauce it just takes time to get used. It does get better though the first 3 months were the hardest. At 18 months she started swallowing her pills by herself. The minereal mix I use to put a little in each bottle and she didnt notice. Goodluck
 
H

Helenlight

New member
"i would take my little pinkie finger and wipe the side of her mouth to get it moist(of course with clean hands) then dip my finger in the medicine cup with the enzyme beads, coat my pinkie finger with about the half capsule amount and put in the back of her mouth. Then i would pop her on the breast,she would suck and the beads would swallow down."

Thank you!! This technique is working for us, it's easier for me and less traumatic for her. xx
 
H

Helenlight

New member
"i would take my little pinkie finger and wipe the side of her mouth to get it moist(of course with clean hands) then dip my finger in the medicine cup with the enzyme beads, coat my pinkie finger with about the half capsule amount and put in the back of her mouth. Then i would pop her on the breast,she would suck and the beads would swallow down."

Thank you!! This technique is working for us, it's easier for me and less traumatic for her. xx
 
K

kitomd21

New member
Fortunately, we were able to pour the beads in DD's mouth followed by breast or bottle...only a few beads at a time. She tolerated them well....
 
K

kitomd21

New member
Fortunately, we were able to pour the beads in DD's mouth followed by breast or bottle...only a few beads at a time. She tolerated them well....
 
K

kitomd21

New member
Just curious...what brand of vitamins are you giving her? Hoping it's SourceCF or AquADEKs...also assuming you're at an accredited CF center...
 
K

kitomd21

New member
Just curious...what brand of vitamins are you giving her? Hoping it's SourceCF or AquADEKs...also assuming you're at an accredited CF center...
 
L

Linda2012

New member
I'm glad to hear you found a method that helps you.

I was lucky that my son always took his enzymes very easily. He was 5 days old when he started, so I'm sure that helped. I sprinkle the enzymes on applesauce and then put it to his lips and let him suck the mixture in. I never forced the spoon into his mouth or even really put it into his mouth. I just held the spoon up to lips, then by instinct he would start to suck and would slurp it in on his own. I think by not actually putting the spoon in his mouth, he never felt forced or fought against it.
 
L

Linda2012

New member
I'm glad to hear you found a method that helps you.

I was lucky that my son always took his enzymes very easily. He was 5 days old when he started, so I'm sure that helped. I sprinkle the enzymes on applesauce and then put it to his lips and let him suck the mixture in. I never forced the spoon into his mouth or even really put it into his mouth. I just held the spoon up to lips, then by instinct he would start to suck and would slurp it in on his own. I think by not actually putting the spoon in his mouth, he never felt forced or fought against it.
 
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