I’ve “known” Barbara for years, as the only other Jew on a message board we frequented. I didn’t realize she had been reading this blog until she left a comment on the pizzeria post. I knew she had an interesting story, so I asked her to share. It’s not only miraculous. It shows how a proactive and informed mother can cooperate with medical professionals to override standard procedures and policies and ensure optimal care.
It’s true what they say: all children are miracles– just watch PBS’s NOVA that depicts the amazing process of pregnancy and birth. There are, however, stories that transcend the definition of miracle. I would like to share my two stories with you.
“What would you want to do THAT for?”
At age 29, I made the drastic decision to lift “the girls” up off my waist and put them back where they belong–in other words, breast reduction surgery. At the initial surgical consultation, the surgeon asked about children and breastfeeding, I told him that I didn’t think I’d ever have kids, but if I did, I wished to preserve my ability to breastfeed if I could. My mother, who had accompanied me, was dumbfounded. “What on earth would I want to do THAT for?” she asked. I ignored her, and the surgeon agreed to do the best he could. A little over a pound was removed from each breast. The surgery went well, and I was thrilled with my new lightweight, perky friends.
The first miracle
At 32 I (finally) got married, and three years later my husband and I decided to try and get pregnant. Two years’ worth of trying later, we found ourselves gearing up for a round of IVF when we got a call from the clinic. “Sorry, we’re going to have to cancel this round. You only have two small follicles, and that’s not enough for us to harvest.” Fed up with the nonsense (Clomid, 3 IUI’s, and now IVF) I declared, “That’s it…I quit…we’re just going to have a really good life without kids!” My husband agreed, and we decided not to go back for another round of IVF.
A couple of months later I went to my annual OB/GYN visit. I mentioned that I hadn’t had a period in a while (a problem I’d had intermittently since going off birth control several years earlier). The doctor offered to give me a prescription medication to “force a period” if I wanted. I told him no, but asked if he’d mind doing a couple of tests “just in case.” So you remember what I said about children being miracles, right? It turns out that one of those “small follicles” that weren’t good enough for IVF harvesting got fertilized the old-fashioned way! My daughter, who apparently likes surprises and chaos, arrived a month early via c-section. She weighed only 5 lbs. 14 oz., healthy except for jaundice.
The breastfeeding miracle
The big question was: Would my artificially perky pals work? I had read as much as I could about BFAR (breastfeeding after reduction), but the bottom line was that I wouldn’t know until I tried. So I nursed. And I pumped (although I never got much using a pump). And I took Fenugreek. At her pediatrician’s insistence, we supplemented my daughter with formula, but I hated every moment of it. We kept up this crazy schedule for six weeks. Once she was past her jaundice issues and she had begun to put on weight I insisted on exclusive breastfeeding to see if it would work. The doctor was skeptical and thought it would be a huge failure (after all, the baby was taking the formula supplements, wasn’t she?), but after a nerve-wracking week that convinced me she was both starving and dehydrated, we discovered that she was perfectly fine and had gained weight. Breastfeeding worked! We never looked back and nursed for 18 months until my daughter quit on her own.
At her first birthday, I became convinced that my daughter needed a sibling. After a long anovulatory cycle, I was able to get pregnant again on my own. The baby was due around my daughter’s second birthday, but I assumed it would be a month early, just like the first. If only.
Another miracle: 500 grams
My second daughter was born via emergency c-section at 26 weeks – slightly more than three months early because of PPROM (pre-term premature rupture of the membranes). She weighed 500 grams (1 lb., 2 ozs.) and was only 11 inches long. Her head was the size of a peach, and she looked like a wrinkled old lady. Our family entered acronym hell: NICU, IUGR, PDA, ROP, PIP/PEEP, ETT, CLD, BPD and NG, to name a few. We were told that the NICU experience is like a roller coaster. Our experience was more like a very long climb up a steep mountain. We made progress, but with twisty trails and peril always at hand.
Micro-preemies are born without the ability to nurse. Even if they could, they wouldn’t have the energy. When they’re stable and ready to begin feedings, they’re given a nasal gavage (NG) tube that goes directly from their nose to their stomach and food is pushed through. (Prior to that, they receive TPN or Total Parenteral Nutrition through an IV line). Breastmilk is critical for micro-preemies because of their immature systems, so I expressed milk from the moment my daughter was born. I remember squeezing out colostrum drop by drop into a glass container while my aunt and cousin visited – I really didn’t care if it bothered them, my daughter needed liquid gold! I already knew my breasts were capable of supporting the nutritional needs of an infant, but I stunk at pumping.
I remembered reading about the drug Domperidone on a BFAR support board, so I ordered it from a pharmacy in New Zealand. The drug is not available in the US, and the FDA has actually issued a warning about it, but for me it was a lifesaver. With the help of the Medela Symphony pump, the NICU’s lactation consultants, and Domperidone, I was able to pump enough to meet my daughter’s base nutritional needs in the NICU. Because my daughter was so small, my breastmilk was fortified to increase its calorie content and help her put on weight. Infant formula, corn oil and polycose powder (a sugar) were added to bring the per-ounce calorie count to 32 kcal. My daughter never lost weight during her time in the NICU (truly amazing), and almost always gained weight. But I hated the fact that she had to have all these supplements.
So why is breastmilk so crucial to micro-preemies if they’re just going to add formula to it anyway? Well, according to these articles, (http://crystalblue.tripod.com/papers/nec-1.html#Massoni), (http://www.smh.com.au/articles/2004/05/02/1083436476738.html), breastmilk adapts to the needs of the premature infant. Preemies have delicate, immature intestinal systems and are prone to a deadly condition called necrotizing enterocolitis (NEC). Breastfeeding does not totally eliminate the risk of NEC, but it greatly reduces the incidence. In addition, breastmilk may help prevent sepsis, a deadly infection.
My daughter spent 3.5 months in the NICU. Thanks to a wonderful nurse, her first exposure was to my breast, not a bottle. She licked and was done, but the stage was set. Each time I visited and she was awake I put her to the breast until one day she actually gave a little suck. Slowly but surely she learned how to nurse, despite the fact that she was also learning how to bottle-feed (micro-preemies must be able to bottle 100% of their feeds without negative incidents before being released). After her release we had to continue with the high-calorie supplements, but she still nursed once a day and I continued pumping. Because she was gaining weight beautifully I was able to convince her pediatrician that we needed to start dropping the supplementation. One by one, each of the offending supplements (oil, sugar, and formula) were dropped from her diet until I found myself nursing her exclusively and we never looked back.
My daughter weaned herself when she was 2.5 years old. At 5.5 she’s experienced numerous health challenges (multiple pneumonias, RSV, immune deficiencies, vision and ear difficulties), but all her doctors agree that she’s done amazingly well. One huge hurdle remains: she has been diagnosed with autism, but as each day passes we see more and more progress. She’s smart, sweet, strong, and solid. She and her older sister are truly my miracles.