Friday, November 18, 2011


So today the nutrition consultant came to talk to us about adding calories to her breast milk so she will gain and not lose weight.  This is frustrating for me because I thought the whole point of pumping was to prevent all of that.  For those who know me well...  I should have stuck to my plan from the beginning.  Formula would have been a lot easier at this point.

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  1. Yeah...I was wondering if you would have to fortify too. We had to as well and it was kind of a bummer. We had to go as far as fortifying with formula and also vegetable oil...mainly extra calories that would not bother Hope's crappy kidneys. Good luck with the pumping and fortifying. If you choose to switch to full formula she will be just fine...I know a lot of heart moms that did and would do it again in a heartbeat.

    Many prayers for continued recovery.

  2. OMG what a beautiful smile. Brett you really caught something special. After reading Hope's blog it may not hurt to go to formula if it will help her gain weight. Just add breast milk for some nutrients from that but that way you won't have to pump every 3 hours. You gave her a great start so don't feel bad about having to change to formula. Everyone is still praying for her and they all believe miracles do happen. Love you all, looking forward to meeting my new grandddaughter next Wednesday when I come up with the kids. Give my love to Princess Olivia.

  3. Oh my, first of all LOVE LOVE LOVE the pic - she is so.stinking.beautiful! And second of all, I know it's disappointing, but seriously, fortification is kinda the usual for cardiac kiddos. I think I can count on one hand the number of HLHSers I know of that didn't have to be fortified to one degree or another. But do try to keep up with the pumping if you can - it's still SO good for these kiddos! I know it sucks - believe me. I pumped for Bodie until he was 10 months - and then, because he'd been NPO for so much of his first few months, I had enough of a stash to quit at that point and still have enough milk to get him to year. I think it helped his immune system tremendously. But the whole time, he was fortified to 27kcal using initially Pregestimil Lipil and then later Enfamil Premium. It's just that these guys' little hearts are working SO hard it's easy for them to burn off everything they eat and not gain weight. And you NEED them to gain weight for the Glenn. (As they explained it to me, her heart will be working about 4x harder than a typical heart until the Glenn, and then only about 1x harder after that point.) So try not to be too disappointed - if she's even able to take everything orally (no ng or g-tube at home), that in and of itself is a huge accomplishment for an interstage HLHSer! Good luck and hope to read soon that you're going, well, you know where! :-)

  4. OMG! Mel she is so precious!!! Look at that smile :)

  5. I pumped and fortified, and pumped and supplement...eventually my supply diminished to the point I gave up. I felt terrible, but sometimes what's best for baby and mama is formula, I'm really glad I stopped pumping when I did (message me on facebook if you want to chat more about my decision, I know it's not an easy one to make) That said even if it's only for a short time the immunities etc in the beginning I think are absolutely worth at least giving it a chance. <3 hugs

  6. I had to do the same for X. Still doing it...I had to stop pumping at 3 months. The stress just killed my supply but I still use extra formula to up the calories. He was 24..after the Glen he is at 22. He had an NG till he was 3 months old. He had a paralyzed vocal cord. He is 14 pounds now. Those extra calories do help. Do what your gut tells you is best ...momma knows! She is super cute! Xavier and I pray for her every day. Happy Thanksgiving. We all have so much to be thankful for!

  7. I already shared with you my experience. The fact we were already fortifying with formula (at first to 27 cal, then reduced to 24 because it was too hard on her stomach) really helped transition her to all formula (she was already used to it).

    After I was hospitalized and realized I would have to stop pumping, we switched the 1/2 and 1/2 bottles to stretch out my milk supply (that was frozen) [ we would do half fortified BM/half formula (increased to the right calories)]. It was so hard for me to make that call, but it ended up being the best choice. She has down awesome.

    With that said, I know another heart mom who had her BM tested. Turns out her milk contained on average 30 cal. She did not need to fortify her milk. You could always insist yours be tested if you really did not want to add the formula.

    She is too cute.


  8. She is beautiful!!! We, I mean, I, pumped and fortified for 11 months straight. Totally normal, just adding extra calories for our kiddos. Zoe used Carnation Good Start and it was nice and gentle on her belly. Keep smilin' little princess!



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