Tuesday, July 19, 2011

Bili Baby

It seems that, in only a little over a week, parenthood has been thrust upon me.  No, I do not mean waking up, changing diapers, feeding, or any of those little tasks.  I am talking about making decisions on the behalf of your child in an attempt to do what is best.  

When we were discharged from the hospital, Gordon Lee had a bilirubin level of about 9.  We had to go back the next day for a follow-up read.  His level came back at around 12.  So, since it was still rising, we went back two days later to have it checked again.  According to all the doctors, he really didn't look that jaundiced.  Yet, his level came back at 23.  25 is the dangerous level.  

So, we were admitted to the hospital for some intense therapy.  He had to go under double bilirubin light exposure--one light under him and one light above him.  Plus, they had to put an IV in his arm to increase his fluids and bring the level down faster.  I hated the IV part, and it troubled me to watch him in this condition.  Yet, I wanted what was best for him.  

Part of what contributed to the jaundice rising so high was the fact that my milk hadn't come in as quickly as it should have.  His weight had come down to about 6 pounds and 6 ounces.  So, they made me put him on formula under the light until they felt his level was low enough for him to nurse again.  This was troublesome for me as I was trying to avoid bottles and formula as much as possible.  Once his bilirubin level came down to 15, they let me take him out from under the lights and feed him.  I was so thankful for that.

Like a little champ, he took to it right away.  He loves the milk much more than formula anyway (besides, it is better for him).  Well, his level finally came down to 12.2 and only rebounded to 12.5 after 6 hours out from under the lights.  He had also gotten back up to 6 lbs 14 oz.  All was looking good, and we were discharged from the hospital.  We were told to go in on Monday for a follow-up appointment to ensure the level wasn't coming back up.

So, we went in yesterday.  At this point, I'm getting kind of frustrated with all of this because my husband and I think Gordon Lee needs stability and peace at home.  And we really don't want him exposed to all of the germs in the hospital.  Going back there repeatedly makes both of those things very hard to do.  We can tell that the disturbance in the schedule stresses him out because he doesn't get to sleep and feed like he should be able to do.  In fact, after 2 days of watching him under the lights, I was ready to tell them that I wanted to take him home because he was showing signs of stress.  The first day, he was tolerant of the lights.  The second day, it became clear that laying there by himself for long periods of time was putting him under stress as he started exhibiting behaviors of self-soothing.  And being held was the main thing that calmed him down.

He has had to have his heels pricked repeatedly to check bilirubin levels, and I can't imagine that that is not stressful to him.  Anyway, I digress.  So, we went to the pediatric clinic yesterday to get a follow-up bilirubin read done.  I was hoping his level had come down some more.  Unfortunately, it came back at 17.  The doctor examined him only to become baffled.  "He doesn't look jaundiced," she said.  "I have been doing this for 25 years and I have seen hundreds of jaundiced babies.  And he doesn't look jaundiced."  So, she wanted another read done.  The only thing is that, when we were admitted to the hospital with his level at 23, all of the doctors and nurses said he didn't look that jaundiced.  I guess he just doesn't show it as much.  

Well, the pediatrician yesterday wanted to get blood from a vein instead of his foot because apparently that's more of an accurate result. They couldn't find a vein and we decided to just go home and not worry about it until 24 hours later because he'd have to have a 24 hour follow-up anyway.  

I have been doing everything they suggested.  I've been feeding him every 2 hours.  He has been having PLENTY of wet diapers. I actually started recording it since yesterday and he has had 10 wet diapers in less than 24 hours. Plus, two majorly soiled ones.  Those are both good signs he is getting hydrated like he should be.  He also went from 6 lbs 14 ounces on Friday to 7 lbs 5 ounces yesterday after a weekend of solely breastfeeding.  So, here I am baffled.

Clearly, he is getting plenty to eat.  But he is still jaundiced.  That picture at the top is from today, and you can see the jaundice in it.  You can also see, though, that his is alert.  Lethargy is a major sign of jaundice.  He is eating well and is more and more alert every day.  We are getting ready to go back to the hospital in an hour for his follow-up appointment.  I started crying last night because I could see the yellow again, and I am just tired of him having to get pricked again and again.  I just don't feel like it is fair to him.

And here I am having to make a decision for him and not really knowing what is best.  My husband and I want him to be at home where there is peace.  I did some research and found out that it is normal for breastfed babies to have a jaundice level up to 20 even up to the 3rd week of life.  I honestly don't know what I'm going to do today if we go in and find out his level has jumped up higher.  I don't want to go into the hospital anymore.

The doctor said one type of therapy is taking them off breast milk for 24 hours because that gets the bilirubin level low enough.  Then, they go back on the breast milk and everything is fine.  That is not good, though, for a mother trying to establish a good breastfeeding routine with her infant.  And he and I have just gotten one down in the last week.  I am thinking about asking if I can take a bilirubin blanket home as a possible alternative to that.  But I also think she probably would have mentioned that if it were available.  I'll still ask about it though.

Maybe I'm wrong and the level hasn't gone up.  I just wanted to post this blog as a request for prayers for us.  We want to provide for our child, but the question right now is what is best for him.  It's not such an easy decision. 


  1. I'm sorry you have to deal with this! My friend's son had jaundice but they didn't have health insurance so instead of keeping him under the lights at the hospital, she took him home and kept him by a sunny window all the time. I'm not sure what his #s were, but it was enough that the doctors didn't want to even discharge him after he was born. Needless to say, he's fine now.

    Also, Caleb had jaundice but he had the opposite problem that Gordon is having. The doctors were baffled because his skin looked really yellow but his levels weren't that high. I tried to tell them that he's yellow because he's 1/4 Korean, but they wouldn't listen to me! I know doctors are very smart and well-educated, but sometimes they just don't have any common sense.

    I'll be praying for him and you!

  2. Becca - prayed and will continue to pray. So sorry you are going through this.

    I have a good friend here that just had a baby in December. Her daughter went through the same thing and they had a light (enclosed in a blanket) that she was able to bring home so the baby could sleep on it at home. I can get more info if you want.

    Blessings and love,