ABO Incompatibilty Jaundice

[lizziebits]

Anyone have any advice/experience?

Long story short, babe is now almost 48 hours old. At just under 24 hours, here bilirubin level was 11.1. At 32 hours, it was 14.1, and then 12 hours later it was 15.9.

For the past 8 hours she has been under the phototherapy lights and being brought out to nurse every 2.5 hours.

Just looking for any BTDT stories or people who might know more about it. I am missing my baby sooo much when she is under the lights.

[dovey]

I'm sorry you're going through that! I think my son had ABO jaundice when he was born since he developed jaundice so soon after birth and also our blood types suggest that. We didn't put him under lights since he was born at home, but we did put him in sunlight. We took him to the pediatrician who sent us to the hospital to have his blood levels checked, but I really can't remember the numbers. I just remember sitting in the hospital waiting room crying because I was so worried about bringing my baby into the hospital and about the jaundice.

The pediatrician recommended giving him formula which we were about to do - I didn't know anything about breastfeeding at the time. But then the midwives got word of this and cautioned us not to. Just to nurse as much as possible. His yellow color went away eventually - probably within a few weeks to a month. He's now six and a very smart and sweet child.

Best wishes to get through this difficult period. It must be really hard! You might try and nurse more frequently than every two and a half hours. Maybe you could nurse her every half hour? Or every hour? Your baby needs lots of milk to help rinse all the bilirubin from her system. I don't know about how the lights work though - maybe the nursing timing is difficult because of them?

[blessedwithboys]

no experience with jaundice in my own kids but a friend had a baby with jaundice and while she called me from recovery to ask me to do some research. aap.org has some info that led her to believe that the levels werent high enought to warrant any treatment other than bf, but out local hospitals are quick to call CPS, so what she did was refuse formula, but she did the lights.

what i did want to say is that you dont have to miss your db! ask for a biliblanket so you can hold her while she is being treated. theres no reason for them to cause separation.

[lizziebits]

Thanks for the input thus far!

dovey -- Thanks for sharing your experience. They are definitely encouraging breastfeeding and haven't said a word about formula. Her pediatrician is a big advocate of breastfeeding. Unfortunately, I can't nurse her more often because she needs to be under the lights as much as possible.

blessedwithboys -- Thanks for that info on the AAP. I've been looking for something like that -- a breakdown of risk by age in hours. It looks to me like her risk level is pretty high according to their chart -- above the 95 percentile. We had originally talked about doing the blanket at home, but the peds said her levels were just too high at this point.

Please keep the info/ideas/experiences coming! It helps to hear from others who have been there.

[Kellyh_01]

Our hospital uses www.bilitool.org to assess risk.

According to that her 32 and 44 hour levels do indicate that phototherapy is appropriate. Once you see the level peak then start to come down you are usually out of the woods. How hard it must be to be separated from your baby! When we have to do phototherapy the baby still rooms in. We just wheel the big isolete into the mother's room. Hopefully just a day or 2 more and she'll be coming home with you.

Kelly

[AlexisT]

My dd had it--she's A+, I'm O+. (We've since found out that DH is AB- so we'll get this every time.) Her jaundice showed up 18hrs post-birth--she was yellow as a banana and very sleepy, so I had the midwife have a look and sure enough, she had jaundice. She got 2 days under the lights.

My hospital was in the dark ages and insisted on formula and did not permit nursing for babies under bili lights (they thought it was too much time off the lights--but time off for formula was fine, and formula feeding a jaundiced newborn is not speedy!) I was post-section and couldn't even walk to the NICU on my own (I only got to visit on the first night when DH was visiting and could take me!) I really don't know what to think. I've had nurses tell me that formula for abnormal jaundice is just an old wives' tale, but the neonatologist who took care of my daughter disagrees... and her SBR levels started rising again when we slacked off on formula. I still think that they should have had me nurse FIRST, but I accept that in her case she may have needed more fluids than I could provide. I did turn out to have severe low supply issues, too.

[lizziebits]

Kellyh -- That tool is awesome! Thank you so much for directing me to it. My DH is going to love it too! I wish they could bring the isolotte in here, that would be fabulous.

AlexisT -- Your experience sounds awful, I'm so sorry. Do you mind if I ask where you delivered -- I see you are in Central PA? I'm in Southeast PA, at Chester County Hospital. I have to say the nurses here and the pediatricians office have been wonderful, taking the time to answer my questions and just really being sympathetic to the fact that she is in here, as well as being so supportive of breastfeeding. Its interesting that the neonatalogist and your experience both pointed to formula being better for her situation. I'll try and keep that in mind in case things don't start looking better and they mention it. My milk is starting to come in this morning though, so I'm hoping that things are going to clear up quickly.

[briome]

I've seen pictures where the mom can hold the baby (and wear the eye protectors) when getting light treatment. Anyone else ever see that? (I have no personal ex wit this)

[AlexisT]

I wasn't in the US for my first, so it wasn't any of the hospitals around here. It was in the UK, and official policy there tends to be BF supportive, but my hospital's special care nursery hadn't gotten the message!

[JessicaS]

Hello!

I am O and my children are both A.

My son was under bili lights for awhile after he was born. My son was in a level 3 NICU as a large children's hospital is pretty close to us. He has a heart defect and he saw quite a few specialists while we were there. They were very supportive of breastfeeding.

[JessicaS]

Originally Posted by briome

I've seen pictures where the mom can hold the baby (and wear the eye protectors) when getting light treatment. Anyone else ever see that? (I have no personal ex wit this)

My son had a bili blanket that we took home. I did nurse him while he laid on it.

It is just like a narrow strip that contains the lights.

They probably won't use the blanket in leiu of the lights until he is getting better but they can use lights and the blanket at once, we would use the blanket when nursing.

[FireWithin]

My second had this kind of jaundice. It showed up before the 24 hour mark. I'm sorry to say that it was a terrible experience.
I had a section and had to pump or stand over him and nurse him while in his billi bed. It took four days for the levels to go to a safe level.

I asked about using a bili blanket so I could hold him more and the nurses were really abrupt and shocked and said it was only for tiny babies. Mine was 10.3.

Emotionally, it was hugely hard for me, and I noticed as the days went by I started to detach a bit. I recognized what I was doing and let myself. The pain of not being able to hold him was just too hard. I was able to reconnect easily when he was done being strapped down.

This time around. (I'm 13 weeks pregnant). I am leaving the hospital in 24 hours and will be borrowing my family docs billi blanket if the need arises. I still need to do research if this is the best thing. I just don't want to go through with what I did again.

that said, I strongly believe that he needed those lights, and I don't regret doing it. I just wish I could have held him at home with a blanket.

Good luck.

[lizziebits]

Thanks again for all the input/experience

Her levels are coming down finally, slowly, after peaking at 19 yesterday morning. I was hoping it would be a little lower this morning -- it's at 16 as of 6 am.

It has been so so difficult to not be able to go home and not be able to hold her. I know we are doing the right thing because her levels were getting dangerously high, and only started coming down with the triple phototherapy.

I'm still so curious as to what makes some cases so severe and other mild. I'm having trouble finding information about that.

[JessicaS]

Originally Posted by Mammo2Sammo

I asked about using a bili blanket so I could hold him more and the nurses were really abrupt and shocked and said it was only for tiny babies. Mine was 10.3.

That's strange. My ds was born at nine lbs and we used one

[JessicaS]

Originally Posted by lizziebits

Thanks again for all the input/experience

Her levels are coming down finally, slowly, after peaking at 19 yesterday morning. I was hoping it would be a little lower this morning -- it's at 16 as of 6 am.

It has been so so difficult to not be able to go home and not be able to hold her. I know we are doing the right thing because her levels were getting dangerously high, and only started coming down with the triple phototherapy.

I'm still so curious as to what makes some cases so severe and other mild. I'm having trouble finding information about that.

I don't think they know that, we really struggled with it. It seemed like it took ages for ds to have a really good poop that would help. My ds was in the hospital for about ten days, we were sent home but then I had several hundred Dr appointments I had to take him to and he was barely on the blanket. Then he was readmitted for a couple days. I was very upset. It was one of the most exhausting things I have ever been through.


It is terribly hard not to be at home in your own bed snuggled up with your sweet baby

Will they let you go home with a blanket?

[FireWithin]

Originally Posted by abimommy

That's strange. My ds was born at nine lbs and we used one

Yeah I think they were lying to me. I thought so at the time also. They were terrible pp nurses. They saw me as the wacko crunchy mom.

[lizziebits]

Originally Posted by abimommy

I don't think they know that, we really struggled with it. It seemed like it took ages for ds to have a really good poop that would help. My ds was in the hospital for about ten days, we were sent home but then I had several hundred Dr appointments I had to take him to and he was barely on the blanket. Then he was readmitted for a couple days. I was very upset. It was one of the most exhausting things I have ever been through.


It is terribly hard not to be at home in your own bed snuggled up with your sweet baby

Will they let you go home with a blanket?

Wow, 10 days, plus a readmission. Thats a really long time. It must have been so hard. I spoke to the doctor in charge of her care today about the "whys", and not surprisingly, she said there really isn't an answer. That is so frustrating.

At this point, here is the deal: When her levels drop to 13 (they peaked at 19, and were at 16 this morning), we get to turn off all the lights but the bili blanket. We see how she does on that for 6 hours and redraw her labs. If that is ok, we get to go home on the blanket. The doctor said she definitely needed the triple phototherapy until her levels were down to 13 though.

I am so so so tired, emotionally and physically. I just keep reminding myself things could be much worse, and at least we know this problem is solvable.

[JessicaS]

When we got home we had a sleep positioner thing we laid the bili blanket on and then laid him on top of that.

Surprisingly we slept fine even with the bili blanket glowing in our eyes We were completely exhausted. It was a huge relief not waking every three hours in the middle of the night to run through the hospital back to the NICU.

That is really great that you have already seen a peak. Ds didn't peak until we got home.


Many scary nasty poop vibes to you once they nasty poop it starts getting beter

[japonica]

My kids both had Rh jaundice (I have Rh antibodies from winrho failure)...well my son probably had a touch of ABO as well as he's B+ and I'm O- and I had ABO anti-B show up in my b/w afterwards.

Both of them were under double bilis for at least 5-6 days. It got pretty hairy in the beginning with my son as his levels were consistently rising under the double bilis, both they turned around by day 5.

Even still, with the Rh-caused jaundice, I was still allowed to take them out and nurse them for an hour. What a strange set up that a hospital won't let you nurse your baby. Even with as serious as their cases were, I could still feed them.

With my daughter, I was "lucky" that I could stay in the moms' border rooms. With my son, they were full, so I had to go to the hospital at 6am everyday, hang out all day and night for feedings, and come home around midnight every night. A nurse did the 3am feed with formula. Thank goodness this schedule only lasted for 6 days.

Good luck! Hope things get better soon and you get to go home!

[lizziebits]

Originally Posted by abimommy

When we got home we had a sleep positioner thing we laid the bili blanket on and then laid him on top of that.

Surprisingly we slept fine even with the bili blanket glowing in our eyes We were completely exhausted. It was a huge relief not waking every three hours in the middle of the night to run through the hospital back to the NICU.

That is really great that you have already seen a peak. Ds didn't peak until we got home.


Many scary nasty poop vibes to you once they nasty poop it starts getting beter

Well, we are home!!! We did have quite a few scary poops before coming to the nice yellow ones Her levels got down to 13, so they did a recheck 6 hours after coming off two of the lamps. She did got up a little, to 14, but they said that was fine. At home, she's been on the blanket and a nurse has come out to draw her levels. She went up to 15 this morning. My ped said this is perfectly fine and is not concerned. She was thrilled to her my milk is in and that she is nursing well. The ped thinks she'll be able to be off the blanket by Friday.

So awesome to be home

Originally Posted by japonica

My kids both had Rh jaundice (I have Rh antibodies from winrho failure)...well my son probably had a touch of ABO as well as he's B+ and I'm O- and I had ABO anti-B show up in my b/w afterwards.

Both of them were under double bilis for at least 5-6 days. It got pretty hairy in the beginning with my son as his levels were consistently rising under the double bilis, both they turned around by day 5.

Even still, with the Rh-caused jaundice, I was still allowed to take them out and nurse them for an hour. What a strange set up that a hospital won't let you nurse your baby. Even with as serious as their cases were, I could still feed them.

With my daughter, I was "lucky" that I could stay in the moms' border rooms. With my son, they were full, so I had to go to the hospital at 6am everyday, hang out all day and night for feedings, and come home around midnight every night. A nurse did the 3am feed with formula. Thank goodness this schedule only lasted for 6 days.

Good luck! Hope things get better soon and you get to go home!

Ugh, that sounds really rough. I'm not sure if you were referring to us, but we were totally able to nurse. We took her off the lights every three hours to nurse. I didn't realize so many of you were not able to stay with your little ones during this. After I was discharged from the maternity unit, she was transferred to peds where parents are allowed to stay 24 hours. We got a bed, and they even fed me because I was nursing her.

I have to say, the hospital staff was awesome. They were super supportive of nursing, and so kind to me. They made every effort to keep me comfortable while I was there and get us home as soon as possible. They also did all the legwork to get us the biliblanket for home, and a home health nurse to come out and check her levels so we didn't have to go back and forth to the hospital.