Update: twins lack of weight gain

efhoping2010

Hello, just an update.  I was the one EBF twins who were doing great with weight gain and then they suddenly dropped off each of their individual growth charts.  So they had me see an LC, start supplementing through pumping and formula too and take Fenugreek and nurse each individually instead of tandem to get their weight gain up.  My little girl would not take a bottle at all or even a cup even with breastmilk.  My little boy will take a bottle just fine.  They have started solids but are not so keen, developmentally they are ahead and are doing spectacular.  They want to play and explore all of the time.  I also have tons of milk so supply is not the issue, the LC even watched me tandem nurse them.

 Anyways, after over a month of constant doctor appointments for weight checks, nursing pumping, nursing pumping, they are still not gaining much, very little in fact so it looks stagnant, yet they are not losing.  They are now girl 12lbs13oz and boy 13lbs 3 oz, they should each be at least 15 pounds by now.   

So here we are, sadly revisiting the possibility of CF.  DH has the most minor form ever found, no symptoms except for his infertility, and there is an ever slight possibility that I am a carrier somehow of another really rare mutation that was not picked up on the main genetic screen when we did IVF.  They did test negative on the newborn screen but that is only for known kinds.  Apparently babies or people with CF often have an absorption issue and do not gain weight no matter how much they eat, they need to take an enzyme, this is all new to me.  

So the next step is that they will have the sweat test for CF and then a bloodtest done that will create a genome of each baby as well.  I am reeling over this.  I knew it was always possible, but now the doctor is saying DH has to see a specialist, he never has, just in case his life span could be affected by his diagnosis or that he needs some treatment.  I can barely type this it makes me so sad.  DH is my everything and the doctor's words just absolutely terrified me.  Anyways I just wanted to share an update since you are all so supportive.  I will update again after they have the special tests at children's hospital.   

violaplayer

You have my thoughts and prayers. I don't know what else to say.

babydontforget

Just want to let you know that I'm so sorry you're going through this.

I found out when I was pregnant, through a screening test that they offered at the beginning, that I am a CF carrier. Total surprise for me, as nobody in my family (that I know of) has CF or is a carrier. We had to get my H screened, and it was nerve wracking for a while there, and even after he was screened and found not to be a carrier, there was of course still the possibility that you're facing, that he had a rare mutation that they didn't screen for. We were faced with this again when Cal tested positive for CF on the newborn screen. The screen told us--and the state--that Cal has one mutation, and it even told us which mutation (it was the same one I have). We had to then do a sweat test to determine whether he had another, and therefore had CF, which would have only been possible if DH had a super rare mutation. So, there we were, once again faced with the uncertainty. Cal passed the sweat test, but of course the genetic counselor had to tell me before I left the appointment that there was still a possibility that Luke has CF and it just wasn't caught on the newborn screen. Small possibility, she said, but it's there.

None of this compares to what you're going through, of course, but I do sort of speak the language, and I totally sympathize with the roller coaster and the nagging uncertainty. Please keep updating as you learn more, and PM me if you'd like. 

amanda31H

I'm so sorry you are dealing with this.  Prayers your way.....

cookie_queen

My thoughts and prayers are with you.

sunnybrook.

I've been thinking of you and wondering about your LOs. I can't begin to imagine what you're going through right now. Thank you for taking the time to give us an update. Sending lots of T&P for your family. 

here4u

Hi, I always lurk on here and just wanted to give you big HUGS.  Sophie had the sweat test done and it was really easy.  The room is really warm and they strapped her all up with lil sweat collection cups and they had her keep her winter jacket on to encourage sweating.  Are they seeing a Pulminologist?  There's also a stool sample they can do too. I really hope everything comes out ok for your girls!

RedWingsFan

Giant ((hug)) headed your way.

I'm so sorry you are going through this - I hope that your little ones test negative for CF, and that everything goes okay with your DH's appointment.

 

Eris-Alexis

Sending lots of T&Ps to you and your family.  I hope all of the tests come back negative and there is some other (and easily solvable) reason your LOs are not gaining.

miesl

I just responded to your PM - I'm so sorry you're back in limbo (and I love how the PMs aren't appropriately datestamped).

Let me know if there's anything I can do.