If you know anything about Cystic Fibrosis, slow weight gain is pretty much the hallmark of CF in infants, so that has certainly been a concern since Ben and I both carry the defective gene. Her state newborn screening test (the "heel stick" or "PKU" test that all infants get) came back negative for CF, which is reassuring, but that still leaves about a 5% chance that she could have the disease. That said, her symptoms have seemed to align more with an allergy-driven inflammation of her gut. She has mucousy green stools, which have tested weakly positive for microscopic blood in the past, she spits up a lot (and it is also mucousy) and even does some large-volume vomiting occasionally. I have spent the past 6 weeks trying to eliminate common allergens like dairy, egg and wheat from my diet, in hopes that we could identify the offending food and keep her on breastmilk. I have had tons of support from Nora's pediatrician, who has never been pushy with formula. Anyone who knows me knows how passionate I am about breastfeeding, so this has been extremely important to me.
Yesterday we saw a pediatric gastroenterologist (Dr B), who also happens to be a personal friend of mine (who I love to pieces). We rehashed Nora's story again, and discussed how to fortify my milk with formula to help her reach an increased caloric goal each day to help her gain,l weight, while in the meantime removing soy from my diet (in addition to the allergens I have already eliminated). She also sent us for some blood work, including a Cystic Fibrosis genetic test, just to take it off the table completely and put our minds at ease. Drawing blood from a 2-month-old is no easy task, and was traumatic for all involved, but in the grand scheme of things it went pretty smoothly.
Later that evening, Dr B called me with rather alarming news... Nora is severely anemic, meaning that her red blood cell count and hemoglobin values were quite low. This is likely an indication that she has been losing more blood through her gut than we thought, and that her allergic colitis is rather significant. Dr B has a hematologist (blood doctor) on board who agrees with the assessment, and recommended very close monitoring with a repeat blood count on Monday.
The bottom line is that we have run out of wiggle room to try adjusting my diet - we cannot allow her to lose any more blood. Dr B is extremely supportive of breastfeeding and knows how much it means to me, which has made it a little easier for me to hear "it's time". We have had to switch her to a completely hypoallergenic formula, and will be transitioning to a fully hydrolyzed formula on Monday when we can pick up some samples from the office (it is incredibly expensive). This should eliminate the possibility of further inflammation and blood loss, allow her colon to heal, and improve her ability to absorb her calories and gain weight. We are also feeding her formula in an extra-concentrated fashion, to increase the number of calories she's getting per day.
As you can imagine, I am devastated about having to give up our breastfeeding relationship. It means so much to me. I am also devastated at the idea that, all this time, my efforts to give her what I believed was the absolute best thing for her have been harming her. But knowing that the risks of my milk outweigh the benefits at this point has helped me to let it go. I'm going to continue pumping until the work-up is complete and we're sure that we're sure about this diagnosis, just in case.
On the bright side, I will have tons of milk to donate, and lots of tiny NICU babies will receive the benefits that I had hoped to provide for my girl. I will also be able to go back to eating like a normal human being, which will be helpful as my residency ramps up and it becomes more and more difficult to cook everything from scratch. Ditching the pump won't hurt my feelings either... Any breastfeeding mom knows the love-hate relationship you develop with the pump! I'm trying to focus on the positive, but I am feeling so. very. sad. I didn't know that yesterday morning when I nursed her, it would be the last time :'( So much of my self-perceived identity as "mommy" seems to be wrapped up in nursing... This bottle feeding thing makes me feel like just any old person who helps take care of her. These are not at all my judgements of formula feeding as a practice, or of moms who formula feed - I have never had these thoughts until I had to make this transition myself. I didn't realize that I would have these feelings. Needless to say, it has been mentally rough. It's not the end of the world, but it hurts.
Please pray for my heart as I get over this loss, but most importantly, please pray for our girl as she recovers. 
Get a prescription for her formula from Dr. B! She can get the insurance to approve payment for it, it will help your family tremendously! We do it for two adorable girls who had the same issues as miss Nora, and they're gaining weight like champs! I'm sorry you have to give up breastfeeding. I struggled with that with Andraya, I felt like a failure even though I KNEW it wasn't my fault, it's a hard feeling to over come, but I know you will. She was lactose & soy sensitive. She outgrew it by age 1. So did George! He was breastfed but had these nuclear poops that would turn anyone's stomach, he outgrew his sensitivity too and had weight gain issues (which is always scary when you hear "failure to thrive") Andraya went on special formula at 6 weeks old and ironically she is my healthiest kid! Not ONE ear infection or respitory infections that generally are associated with formula fed babies. Miss Nora will get through this, and I know you know that, it's nice to have a place to put down your thoughts, fears, feelings. Take care Jenna!
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