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It pays to be persistent – Liz’s story

Posted on September 7, 2008
Filed under: Allergy or intolerance to breastmilk, Breast infection, Breast pain, Breast refusal, Breastfeeding while on medication, Cup feeding, Expressing, Food allergy, Mastitis, Nipple confusion, Nipple pain, Premature baby, Recurrent mastitis, Tandem feeding, Thrush, Twins

I was on bedrest for six weeks during the last part of my pregnancy with Jonah and Owen, and I remember just wishing that they would be born so that I could get up and move around and do things again. When I think back on that now, it seems so foolish. If I had it to do over again, I would just lay there all day thinking of how wonderful it would be to have two full-term babies.

I was having ultrasounds twice weekly because the doctors were very worried about twin-to-twin transfusion syndrome, a dangerous complication that happens sometimes with identical twins. I drove to one of my Thursday ultrasounds, thinking that it would be more of the same: they are still different in size and very small, so you should lay around and do nothing all day. Instead, they took a very long time to do the ultrasound, and when the doctor came in afterwards to give me the report, the first thing he said was, “So we have you scheduled for a c-section at 7:30 tomorrow morning.” I was shocked! I was only 35 weeks pregnant, and not feeling ready for the twins to be born. But they had measured the blood flow from the placenta, and felt that Baby B, the smaller twin, was not getting enough oxygen and nutrients. So it was time for them to come out. Both babies were breech, and the doctors refused to allow me to even attempt a vaginal birth. They told me that at 35 weeks, the babies should be healthy enough to come home within a few days, and that “they might have to spend a day or two in the NICU, but it’s no big deal.” I can’t believe they told me that! And I can’t believe I bought it!

So the next morning, Jonah and Owen were born by C-section at 8:17 and 8:18 in the morning. They were not breathing very well, so the nurses whisked them off to the NICU with nothing more than a quick wave to me. My husband went off with them, and I was sent up to recovery. It was so strange to be in the labor and delivery ward of the hospital with no babies. I could hear babies crying in neighboring rooms, and I ached to be holding my two little ones. When I went to see them in the NICU, they had their faces covered (for minimal stimulation), and were positively covered in wires and tubes and monitors. We were not allowed to touch them or even talk to them above a whisper that first day, and the news just kept getting worse and worse. I will never forget the moment when the doctor said to me about Owen, “Well, we don’t have many more tricks up our sleeve. If he doesn’t respond to the Nitric, we’re going to have to call Boston.” Both babies had severe respiratory distress syndrome, and they didn’t respond to hardly any of the treatments for the first 24 hours.

Meanwhile, I was pumping and trying to build my supply so that I could nurse them when they were strong enough. At first, we were adamant that they not have pacifiers or bottles, but when the nurses said that bottle-fed babies go home sooner, I gave in. It was two days before they even were able to have the first drops of colostrum swabbed on their gums. Slowly, they started to be able to take little bits of my milk from a bottle nipple, once they were off the ventilators. It was five days before we got to hold Jonah, the stronger of the two. I kept asking when I could nurse them, but the nurses told me that it would make their oxygen levels drop, and they had to be on a certain type of ventilator, and all kinds of other excuses.

I had plenty of milk, and I was pumping every 3 hours around the clock to build a supply for my little guys. The hospital finally told me to store it at home in our freezer because theirs was full!

But we still weren’t nursing. Jonah was in the hospital for 2 weeks, and I nursed him 3 times before he came home. Owen was in for 3 weeks, and I only nursed him once while he was there. Once Jonah came home, we worked really hard to get him latched on and nursing. He was getting stronger every day, but it was so hard to nurse him (he would nurse for an hour every feeding), then offer him a bottle of milk so that we could be sure he was getting enough, then pump so we would have milk to offer. And I tried to go to the hospital every day to visit Owen, who was still there. It was insanity!

And it only got crazier when Owen finally came home. We nursed every single feeding because I was so determined to get them on the breast. And it was the same routine: nurse, bottle, pump. All day and all night. Owen had to have some special high-calorie formula that we mixed with breastmilk instead of water, because he wasn’t gaining weight very well.

And when Owen came home, I started having excruciating nipple pain. It felt like broken glass was coming out of my breasts at every feeding. My husband would come home and find me nursing the boys and sobbing. I started taking painkillers just to be able to feed them, because I refused to switch to formula. Our doula told us that it was almost definitely thrush, so I went and got checked out by my doctor. She told me that the boys’ latch looked good, and it probably was thrush, but she wouldn’t treat me unless their pediatrician also treated them. Their pediatrician then told me that he wouldn’t treat them unless I was also being treated. It took me three days to finally convince them that someone had to write the prescription first. And so we all took nystatin, which did nothing for two weeks. Then, my doctor switched me to Diflucan, and we used gentian violet along with it. And, even though everything in our house was purple for a week from the gentian violet, it worked!

We had four glorious, pain-free days of nursing before the pain returned. And so I went nuts. I read everything I could get my hands on about yeast. I became the Hygiene Nazi, treating everything that touched breastmilk as though it were toxic waste. We put vinegar on everything, and used grapefruit seed extract and gentian violet, and many courses of Diflucan. Nothing worked.

So I was in immense pain all the time, but we finally did get the boys solely on the breast, with no bottles at all. What a triumph! I wish I remembered more of it, but I spent so much time in a haze of pain that it all seems like such a blur to me.

Finally, six weeks after the pain returned, a lactation consultant at the support group I was going to said, “maybe it’s not yeast.” The thought had never occurred to me (or, apparently, to my doctor). So I went to the doctor and insisted that she culture my breastmilk, although she didn’t think it was necessary. It’s a good thing we did, because it turned out that I didn’t have yeast at all; instead, I had a raging staph infection in my nipples.

She put me on dicloxacillin, which didn’t make me feel better and gave me an allergic reaction. When I told the doctor that I was still having pain, she told me she was just going to prescribe another course of Diflucan, because it was probably just yeast from the antibiotics. I would not take any more meds without being cultured, so I insisted that they wait and do another culture. And it’s a good thing, because it turned out that the staph was MRSA, a medicine-resistant form of staph.

The doctor put me on Levaquin, another antibiotic that the culture indicated would work, but told me that I couldn’t nurse while I was on it. And then told me that I could. I asked our pediatrician who told me it was fine, and then another doctor in his practice said it was absolutely not. I kept asking doctors, and kept getting conflicting answers. Finally, I decided that I wouldn’t risk the health of my two boys who had already been so sick, and I decided that I would formula feed them for the fourteen days while I was medicated, and just pump. I had to go stay with my parents so that they could help with the logistics of managing and feeding two babies and pumping. After 24 hours of having the boys reject the bottles and then, finally, gulp down the formula and spit it all back up, I decided that I couldn’t do it. I did a lot more research, and found some information saying that it was probably all right for me to nurse while I was on the Levaquin. I still was wary of it, so I decided to nurse every other feeding, so at least they would still get the benefits of breastmilk, and any harmful effects from the medicine would be limited. It was a disaster. They had a lot of trouble keeping the formula down, and my supply dropped because the pump was not getting as much as the babies normally did.

But the medicine was working! By the end of the fourteen-day course, I was pain-free again. And once I was done with it, I started nursing the boys for every feeding again, and trying desperately to build my milk supply back up.

Unfortunately, the pain came back after only four days. I had another two cultures done, because I wanted to make sure we were treating the right problem. I was afraid that we had yeast again from the antibiotics. But both cultures came back negative. I was at my wits’ end. I couldn’t understand why I was still in so much pain. I went to my doctor, who told me that she just couldn’t understand it either. She said that our latch looked good, so I probably just needed some time to heal up. She told me to pump and bottle feed the boys for a week to let myself heal. “No nursing for at least a week!”, she told me. This didn’t sound quite right to me, but I didn’t know what else to do, so I tried it. Again, it was a disaster. My breasts no longer would let down for the pump. I would pump for 20 minutes and get only an ounce of milk. Needless to say, my supply plummeted. We had to supplement the boys with formula, which they again had trouble keeping down. I went against my doctor’s advice and nursed them once a day, in the evening, just to make sure they would go back to the breast after a week.

After 4 days, they rejected the breast completely. Every time I tried to nurse them, they would scream as if they were being terribly hurt. It was horrible. They had decided that the bottle was much easier, and they didn’t want to nurse anymore. I stopped all bottles immediately, and we cup-fed them to make sure they were getting enough to eat. They still refused the breast, and cried all day and all night.

I was completely at the end of my rope. Friends and family were telling me to just give up and switch to formula, but I felt like I didn’t know how to be a mom without nursing. It was so important to me, and I felt like Jonah and Owen really needed it, that I refused to quit. I cried and cried and spent hours and hours researching on the internet. Finally, even though we didn’t have the money, I bit the bullet and paid for a private lactation consultant to come out to the house and consult with us.

She will forever be an angel in my mind. In the space of about 15 minutes, she had diagnosed and then fixed our latch problem. I felt so foolish that I had been ‘doing it wrong’ for four months! As for the nipple confusion, she said to just keep doing what we were doing, and that now that they had a better latch, it would be easier for them to get milk from the breast. Within a few days, my supply was back up, the boys were nursing like pros, and I was pain-free! I can’t believe it was so easy after all that pain. I had been told by two other lactation consultants, my doctor, and the boys’ pediatrician that our latch was very good.

It was beautiful to nurse without having it make my toes curl in pain! I was thrilled, but the boys were not happy babies. They were covered in rashes, and spitting up constantly, and too uncomfortable to sleep, ever. We were all exhausted, and I did more research. Although my doctor told me that what I ate wouldn’t affect the boys, I thought that something I ate might be bothering them. I cut dairy out of my diet for two weeks, and they got much better, and then worse again. I decided to do the Dr. Sears total elimination diet.

So for two weeks, I ate nothing but rice, millet, summer squash, turkey, sweet potatoes, and pears. I was ridiculously hungry and lost a twenty pounds, but it helped a lot. The boys’ rashes disappeared, they stopped spitting up entirely, and they started sleeping longer stretches at night. They seemed much happier.

After a couple of months, we figured out that they were reacting to dairy and soy in my diet, which explains why they always had so much trouble with the cows’ milk formula. So now I eat anything but dairy and soy. Now that the boys are a year old, I am able to eat a little bit of cheese once in a while.

One day, when the boys were 7 months old, I noticed that my nipples were getting sore again. We had started nursing in some new positions, so I just monitored their latches closely, hoping it would go away. It didn’t, and one day I woke up to find that one of my breasts was red and hot. I had had this for months before, and I figured it would go away, but later that day I started to feel hot and really tired. Before long, I had chills and was in really bad shape. I figured out that I had mastitis, and was put on antibiotics. Within a day, I was feeling better and I thought that was the end of it. Unfortunately, I had it again as soon as the antibiotics ran out. The same thing happened twice more, and I ended up with three courses of antibiotics within 8 weeks. I was sick from the antibiotics and worried about taking to many meds, especially because I was also on Diflucan so that I wouldn’t get thrush from all of the antibiotics. The fourth time that I woke up with a red breast, I decided to give it 24 hours and see what happened, as long as I didn’t get a fever. I kept a heat pad on my breast all day and after every feeding I swabbed my nipple with grapefruit seed extract, let it dry, and applied Bactrim and a clean nursing pad. After 24 hours, the inflammation was gone!

Still, five months later, this happens about once a week, but it always goes away with heat and super hygiene. I had given up on it until recently, when a friend sent me a video about something called inflammatory breast cancer. I was scared into getting some answers, and will be seeing a breast health specialist this month and getting a mammogram and an ultrasound. So far, no one has been able to give me any answers, but I’m hopeful that we will figure this out.

Our nursing relationship has been worth every bit of trouble. It has been amazing to watch my boys grow from two tiny, sick, skinny babies into happy, healthy, chubby mama’s boys. They will be a year old this month, and they are complete milk monsters. Their first baby sign was the sign for milk. They don’t even know what to do with a bottle. Aside from the disastrous (and, thankfully, occasional) formula, they were exclusively breastfed for 7 months, when they started solid foods.

I think we have made it this far on sheer determination, but I hope the next year will be easier; my initial goal was a year of nursing, but now I think we’ll do two!

Filed under: Allergy or intolerance to breastmilk, Breast infection, Breast pain, Breast refusal, Breastfeeding while on medication, Cup feeding, Expressing, Food allergy, Mastitis, Nipple confusion, Nipple pain, Premature baby, Recurrent mastitis, Tandem feeding, Thrush, Twins

Comments

5 Responses to “It pays to be persistent – Liz’s story”

Samantha on September 10th, 2008 2:42 am

You are trully amazing. I am in awe of your dedication, and your boys are so very lucky. Thanks for sharing your story.
Stephanie on September 10th, 2008 3:18 am

Yay Liz!! This is a great story. I admire your persistence to give your babies the best. And they are great.
JO on November 5th, 2008 2:07 pm

What a challenging breastfeeding journey you have had. I’m definately in awe of you. I think breastfeeding one healthy baby is difficult enough! But you have conquered it all. I hope you are proud of yourself, you really should be!
Grace on March 8th, 2009 1:23 am

Thank you, thank you SO much for sharing your story!! You are a true inspiration for all mothers and mothers-to-be.
What a wonderful mama your boys have. Such determination and perserverence.
I am so sorry that in our rich world, women have to pay to get help with breastfeeing. I feel this is our biggest downfall, in todays world. Every woman deserves to have support, full support for breastfeeding.
I know your story, and others who share there, is a great help and an encouragement to others.
Thank you.
TRISH on September 14th, 2009 9:50 pm

Liz your story is amazing , I am in awe of you and your determination to breastfeed your gorgeous boys.
I am so glad you got the right help in the end too.