Tuesday, January 21, 2014

Jaundice


  Jaundice is normal for many babies, mine included. Gavin, my first, had jaundice which was diagnosed at our visit with the pediatrician two days after we left the hospital. His number was 18 ml per something. I don't know the units but  the number refers to the amount of bilirubin in the blood. The placenta takes care of this for the baby in utero, but the baby's liver has to take over after birth. Sometimes this doesn't happen quickly and the amount of billiruben in the blood will rise. Gavin had a phototherapy bed that was delivered to out house and we had to keep him in it, except for feelings, for five days. His blood was checked everyday by a home nurse and we were able to stop phototherapy when his number came down. His billiruben levels continued to fall very slowly and his skin looked orange for about a month.

  Henry had elevated billiruben levels but not high enough to require phototherapy. We laid him in the sunlight from the windows a few times. Everly did not have jaundice at all. She was my only full term baby, my only natural birth, and she was born ready to nurse. She nursed very well from the first hour and my milk came in within 24 hours. I suspect that those details had something to do with it.

  Genevieve had jaundice the worst of all. Since our last baby was born, hospitals have started checking babies' billiruben levels at 24 hours after birth. She was 10.9. The doctor decided to start phototherapy at home, which was a very cautious decision as 10.9 is not terribly high but that was at 24 hours and her billiruben was likely to continue to rise. I could see the orange/yellow tint to her skin. A phototherapy bed was delivered to our house right when we got home from the hospital.

  We went to the pediatrician's office everyday and had blood drawn and tested. She had lost weight and was not gaining and her billiruben fell slowly. The first day at the pediatrician's office, she was at 18 and her weight was 5' 12". She had been 6' 7" at birth and 6'3" when we left the hospital. My milk had come in quickly with my other babies and they had all regained to their birth weight in only a few days. She was already my smallest baby and I was alarmed that her weight was down so much. Her number fell slowly and on day seven, it was 15.9. We could stop at 15 so the bed was picked up the next day.

  A week later, we went back for Genevieve's two week check-up and the doctor wanted to check her billiruben levels. Ideally, her number would have continued to fall and she would be around 10 by then. I looked at her and thought she looked very yellow. I told the doctor that I would be surprised if she was down to a ten based on her color. The test takes about 15 minutes and we had always waited for the results in the office. This time, the doctor said we could go and she would call us with the results. 

  I missed the phone call and an hour later saw that I had a voicemail. It was our doctor saying that Genevieve's billiruben was at 20. I knew from our experience with Gavin that 20 meant a return to the hospital for phototherapy. Our doctor said if she had known it was that high she wouldn't have let us leave but that we would try phototherapy at home that night to see if it made a difference. She said she hated to leave this information on my voicemail. I was glad it was on my voicemail because I was crying as listened.

  So I had a sobfest in my car and I went home and sat Genevieve in the sunlight until the home medical company delivered the bed. I worried that I wasn't feeding her well enough. Babies need to eat well and be making a lot of dirty diapers to help get the billiruben out of their bodies. Genevieve had not been gaining weight and took more than a week to go from miconium diapers to breastmilk diapers. She was always so sleepy that I had to work hard to keep her awake for feedings and sometimes we both fell asleep. 

  I worried a lot, felt like a bad mom, and wondered what was different this time comparing my first three babies to Genevieve. She was small to begin with. She was several weeks early. She was not eager to nurse. I had been sick with the flu or an infection the first five days home from the hospital. 

   I looked online for information. I read the .orgs and .nets but not the .coms. None of the sites I read discussed a rise in billiruben levels after stopping phototherapy. All of them said that jaundice cleared up in a few days. None of them talked about being a 20 at two weeks old. One mentioned the risk of brain damage if left untreated but assured that jaundice was always treated in time with regular pediatric care. There was discussion about breast feeding contributing to the rise in billiruben because it takes longer for a breastfed baby to start digesting and removing billiruben. 

  My doctor had suggested switching to formula for a few days while we got the billiruben under control. Not one of the sites I looked at endorsed that suggestion. All seemed to value breast feeding and all of its benefits. I knew that her billiruben was high, but I looked at her jaundice as temporary and breast feeding as long term. I have breastfed all of my babies for 9 months to a year and plan to let Genevieve self-wean. I knew that I had enough milk and that my supply was not the issue. 

  Though I was nervous about nipple confusion, I started giving Genevieve a bottle of about two ounces of my pumped breast milk after nursing. I was able to pump about five ounces usually in the afternoon. I would give her one bottle in the car while we waited to pick up Gavin from school and let Keith give her one before bed. This seemed to work as she gained a little weight and her jaundice came down enough to stop phototherapy by Friday, day four of our second round of phototherapy. The doctor and I agreed to continue phototherapy through the weekend, given our previous experience, and check her blood midweek, after being off the lights for a few days.

  That brings us to today. Genevieve was 3 weeks old yesterday. We went to the pediatrIcian today to recheck her billi. When I put her on the scale, it read 6'7", which was her birthweight. I can't believe it took 3 weeks to regain to her birthweight but I am so relieved that we are finally there. Her billi was 15.6. This is not dangerous, but it did rise since it was 14.7 last check. The doctor once again suggested formula for a day or two. She said we need to rule out breastmilk jaundice.

  Breastmilk jaundice occurs when something in the milk causes the billiruben levels to rise, breast feeding jaundice occurs when baby isn't getting enough milk to digest and get rid of the billiruben. I know that I make enough milk and especially since I started supplementing with pumped breastmilk, I believe she is getting enough. One blood test last week was sent to a lab to check for a whole host of other potential problems, but no other reason for high billiruben levels turned up.

  I hate the idea of feeding her formula when I have milk for her. But after three weeks of jaundice and worrying, I am ready to do what it takes to get her well. Last week, I would have advised another mother in my shoes to continue breast feeding. Today, I realize that I have avoided the formula as long as I could and we just need to go for it. 

  It's been 8 hours. I pump every three hours and freeze my milk then give Genevieve a two ounce bottle of formula. The doctor gave me 12 little sample bottles. I figure I'll use them until they're gone and go back to nursing. My supply is rapidly decreasing. I got an ounce less milk each time I pumped today. I think it will take some work to regain my supply when I return to nursing. 

  I long to nurse my baby. I am so blessed to be able to breastfeed. It seems so counter to what I know that breastmilk may not be best for my baby, that she needs formula to get better.

  As natural as breast feeding is, pumping seems very unnatural. This machine goes  "wooooohmp wooooohmp woooohmp." It doesn't feel good at all and no amount of Internet surfing on my phone can distract me from the nagging discomfort of using a machine to extract milk from my breasts. Now I am cursing my decision to buy a one sided pump and not the double. Whatever I saved, I would gladly spend now to be able to pump in half of the time. What was I thinking?

  I realize that I have a lot of pride in my ability to nurse my babies. I don't want to be prideful. I want to be humble and grateful because I know women who wanted to nurse and couldn't or who never made enough milk and supplemented with formula or who had to stop nursing before they were ready for medical reasons. These problems weren't their fault and my adequate supply is not by any skill or ability that I possess so my pride is misplaced. I should just be grateful and keep some space for empathy for other mothers who have different experiences with breast feeding than I do.

  Genevieve already looks better. In just a few hours of ceasing breastmilk and feeding her with formula, her skin has lost much of it's yellow tint. I did sit her in the sunlight from our front window all afternoon but the formula is the new factor. I can go back to beast feeding tomorrow and will continue to put her in the sunny window, we get about four hours of sun every afternoon. We will check her again next week. I am sure we will see improvement. I am so exhausted of this! I thought that her check today would be the end of the story.


Update:
  We went in to recheck Genevieve's billiruben. She was 4 weeks old the day of the appointment. She had really nice weight gain since the previous appointment - she was 7 pounds even! Her billiruben was down to 12. This was a relief because I thought she looked more yellow that day. What a relief to see that number drop. The doctor wants to continue checking until Genevieve gets down to 10 so we will go back in two weeks. I don't see why she wouldn't be down to a 10 by then. I've decided to stop worrying, I think we are finally kicking this thing. I have no idea if using formula helped or not.

Final Update
One week after dropping to 12, at about 5weeks old, Genevieve began to look worse. I could tell that the billi was rising but we had a lot of winter weather and absolutely no sun. One day, when I changed her diaper, I thought she looked as bad as she did when we needed the lights so I made a doctor's appointment for the next morning.
  I knew the doctor would say we needed to switch to formula so I went out and bought some and preemptively switched that evening and pumped to keep up my supply. 
  At the doctor, she tested 13. A rise, but still not dangerous and not as high as I had thought. The doctor said to go to formula for a week and called a friend of hers who is a liver specialist to see if we could get in to see her.
  The liver specialist did not think that we needed to come to her and that it sounded like we were doing what we needed to do.
  That weekend, I went to a conference and took the baby with me. It would have been too much trouble to pump while I was there, so I went back to breastfeeding. 
  The following Monday, I was thinking about our appointment the next day and hoping that we could be done with billi checks for good. I was really convicted that I hadn't really prayed for Genevieve with the expectation that God would heal her. My attitude was that this wasn't a big deal and though I prayed, I really didn't have the expectation and faith with that prayer. 
  So Monday, I prayed and I believed that the next day she would be below 10 and that we would not have to check her anymore and the jaundice would be behind us.
  That Tuesday, she was 6 weeks old. We went to the doctor. Genevieve's color was looking great. The nurses talked about doing extra blood work but when the doctor saw her she thought Genevieve looked great that we might not need to so the additional blood work. Sure enough, her billi came back at 9. Prayer were answered and the jaundice was behind us. I was so happy!

1 comment:

  1. I really appreciate this post. I was devastated when I couldn't breastfeed Hattie. She was born at 6lb 7oz too, and dropped to 5lb 6oz in 5 days. I'm sorry you are going through this, but I'm so happy that Genevieve's color is looking better and that she's back to birth weight.

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