After seeing multiple Lactation Consultants (LC), a Family Doctor, and a Paediatrician, it turns out that the LC's were right all along and Emma's weight loss, and failure to gain weight adequately has been caused by her allergy to cow's milk protein and sensitivity to soy. Also known as Milk/Soy Protein Intolerance or MSPI.
Emma was diagnosed late July as a 'Failure to Thrive' baby which with all of the increased risks of illness was pretty tough to hear. We started weighing her on a weekly basis, some weeks she would lose a couple of ounces, some she would gain a couple, and some she would stay the same. This is when the we decided to top her feedings off with a little Similac and we had the hospital 'incident'. The LC's said from the beginning that she was sensitive, but when we saw the paed he suggested that it was a feeding issue since I'd had so many challenges with breastfeeding and she was such a mellow baby that she wasn't giving proper feeding cues and wasn't eating enough. He basically wanted me to quit breastfeeding and to put her full time on the soy formula.
Needless to say the LC's hit the roof. I personally was devastated thinking that I was starving my baby and all of my struggles to make the feeding work were all for nothing. To date I've had cracks and bleeding, thrush, plugged ducts leading to pre-mastitis, a forceful letdown that was too much for Emma to deal with, and an oversupply giving very painful engorgement. And we won't even mention the nursing strikes every time she had a bottle. None of this could have been predicted, I was just one of the unfortunate few that has this many issues. I felt so robbed that I struggled so much, but even more so when I worked through all of those issues to have a paed suggest I wasn't feeding her properly.
So we went with our gut and followed the advice of the LC's and cut all dairy and most soy out of my diet. I tried topping her off with the soy formula for two weeks and her reactions kept getting worse and she kept getting grumpier. And this just isn't a grumpy baby lol.
We've been back to the family doc and we finally got a prescription for a hypoallergenic elemental formula called Alimentum. In all other provinces it costs $70/case of 24, but NB is the only province where medicare covers the complete cost of it. It's pretty gross stuff and hard to get babies to take it, but we've had some luck and she gets a 4oz bottle each day. She's going to need to have it now so she's used to it in case she doesn't outgrow the allergy by age 1. With the severity of her reaction to the Similac on the first day of using it, it's my LC's opinion that it may take longer and she's been right about an awful lot lately.
The best way for Emma to outgrow the allergy is to continue to breastfeed as long as possible. Then I would introduce the dairy by eating it myself and her getting it through my milk. The Alimentum formula is mostly to give me the odd break if I need it, and in case she keeps the allergy past the age where I want to breastfeed.
I was back to the LC on Wednesday and Emma had gained 1.3 oz in 5 days which was half of where she should be. Today I had her back and she gained 6oz in 3 days! That's more than what's expected for a formula fed baby. So the dairy is officially out of my system and hers, and I'm officially over the moon.
I take her back next Friday for a 6 day stretch to see if the weight gain can stay up to 1-1.5oz per day. Fingers are crossed.
I have to say that I've been very humbled by this experience. When your child isn't growing, and at an increased risk for things like SIDS or Cystic Fibrosis, and you can't figure out why, it's pretty hard not to spend an enormous amount of time dwelling on it and googling it.
We're not sure what long term effects the weight loss may have on her in the long run and only time will tell. The big question is if and when she will outgrow the allergy. Solids will definitely need to wait until 6 mos and we'll need to be very careful when introducing new foods in her diet.
Now I'm relaxing a bit more and so very thankful for the support of a wonderful husband (who has seen me cry through more than one feed), amazing LC's, and so many friends who told me I could do it and not to give up. Lastly I'm thankful for having such a mellow and patient baby through all of this.
Wow, this ended up being quite a bit longer than I had intended. But I wanted to share how well our little girl has done, and ask you all to keep your fingers crossed that she continue to grow.
Thanks for reading, and all of your support especially when so many members of mine and dh's family kept wondering why I just wouldn't put her on the bottle and 'be done with it'. I credit so many friends I've made on the BW site for my sanity this past year.
Hopefully much more good news to follow in the upcoming weeks.
