Nutrition update and pictures

If you will bare with me and read the entire saga of our latest appointment with Dr. Miloh, I will reward you with some pictures at the end (that have nothing to do with the appointment).

  Megan (bless her!) got to our house just after 7:00, so we were able to leave Spencer in bed and not have to deal with him at the appointment.  We made it to check in at 7:55.  We met with Dr. Miloh, then the nutritionist and then Dr. Miloh again.  This is what we learned:

Elliott's latest blood tests and urine tests looking for metabolic diseases are coming back normal.  There is one test, for amino acids, that is not done yet (it was still cooking, according to Dr. Miloh), but we should know the results of that by next week hopefully.  He was going to show Elliott's profile to the doctors in the Genetics and Metabolism Department at Phoenix Children's, just to get their expert opinion as well.  We specifially asked, based on this new information, if it is still within the realm of possibility that all of his liver problems could be related to his prematurity and the sepsis infection.  He said yes.  He said that since everything else is coming back normal it is possible that he had an immature liver that wasn't quite functional and just as it was normalizing the sepsis threw him for a loop and made everything go out of wack. We were thrilled to hear that.   He did say though that it is taking an awfully long time for recovery to happen if it is from the sepsis and in his past experiences most babies have recovered before our current time frame. He said that at this point his main concern is Elliott's nutrition since everything is looking good (despite the fact that the GGT had gone from 1300 to 1500 in 2 days).

Enter the nutritionist.  I didn't really like her.  Her recommendation was that I pump breast milk 9 times a day, mix it with formula and give it to Elliott in a bottle.  I flat out told her no.  She was basing this on thinking that it would be the easiest way to get extra formula into him.  Has she ever taken care of a nursing newborn?  I should think not.  What am I going to do?  Tell a screaming Elliott that he needs to wait for 15 minutes in the infant seat while I pump?  And then make him take a bottle, which he refuses to do?  And be taking care of Spencer at the same time?  Yeah, that sounds easy.  I nurse Elliott, not only because breast milk is the best for him, but also because it is easy, convenient and special.  I cannot imagine having him wake up in the middle of the night and not nurse him.  Actually I can't imagine doing it at any time during the day.  I nurse for so many other reasons than just giving him breast milk. 

 I agreed with her that he needs more formula and I agreed that I would get it into him, I just wasn't going to do it how she wanted me to.  So, on the way home from the appointment we stopped at a breast feeding supply store and I bought one of these:

It is the medela supplemental nurser system.  Basically, every time I nurse I need to give Elliott 1 ounce of formula.  The goal is to get 10 ounces in him in a 24 hour period and I nurse him 9-10 times a day.  With this supplementer I put formula in the bottle and then get him to latch on with the tiny little tube in his mouth.  That way he is taking the ounce that he needs while nursing.  

It's not a perfect system.  Since I only have 1 I have to wash it every time I nurse.  If you let it sit too long the formula gets clogged in the tubes (they are thinner than a strand of spaghetti) and then you have to let them sit in hot water to unclog.  If we end up having to do this very long term I will need to buy another one, I think.

There is actually another brand of supplemental nurser, called the Lact- Aid, that people seem to have more success with long term.

It just seems to be another expense in our ever growing list of expenses though.

So, we've been doing this for 2.5 days now.  It's going well so far.  The nutritionist said that Elliott is at a mild to moderate level of malnutrition and we absolutely have to make sure he does not progress further.  He was growing in length and his head was growing, so that was good.  He was also gaining weight without formula, just not enough.  The nutritionist said that cholestatic babies need double the amount of calories to gain weight as compared to non-cholestatic babies.  I could spend the next 3 months pumping like a mad woman to supply that demand, but he still needs the MCT fat, so it wouldn't make that big of a difference.  

Once we were done meeting with the nutritionist and Dr. Miloh was back I told him that I needed to know for sure that this wasn't my fault.  I told him to look me in the eye and tell me that Elliott's weight gain problems were because of his liver and not because I don't have enough milk for him.  He said it was for sure the cholestasis and he said he could even prove it.  He said that babies Elliott's age should gain about 25 grams a day.  Prior to the sepsis he was gaining 24 grams a day.  Then, as his liver function tests have gotten worse, his weight gain went down.  With every bump in liver function (bump meaning functioning worse) his weight gain corresponded.  First he went down to 12 grams, then 10 grams, then 8.8 grams and now he's at 7.7 grams a day.  Until his direct bilirubin level is less than .4 he will be considered cholestatic and will have trouble with absorbing calories, fat and vitamins.  Also, the liver problems ramp up his metabolism which is why he needs double the calories.  Dr. Miloh was also very supportive of me continuing to nurse.  He does not want me to stop because he sees no reason for me to stop.

We came home from the appointment encouraged, especially about the blood tests, and discouraged about the weight gain.  Some people might think that I should just wean him and put him on straight formula.  I really, really don't want to do that because there is a chance that he will recover from this and we can go on to have a normal nursing relationship.  I nursed Spencer until he turned 2.  I would hate to give up on Elliott just because it's hard right now, when it might not be in 3 or 6 months.  I am willing to renegotiate my thoughts if he continues to not gain weight.  I'd rather him be on more formula than a nasogastric feeding tube.

Dr. Miloh called us at home on Wednesday.  I freaked out when he said who it was.  Why was he calling?  Was it bad news?

He was calling because he was thrilled to be able to tell us that Elliott's bilirubin level was down to 1.8.  It took 6 weeks to go from 3.6 to 3.0.  It went from 3.0 to 2.9 in a couple of days.  Now it took 2 weeks to go from 2.9 to 1.8.  That is very, very good news.   He also asked how we were doing with the extra formula.  I told him about the supplementer and he was so interested in it that he asked me to bring it to the next appointment so I can show it to the nutritionist and the nurses so that they can perhaps recommend it to other families and be more supportive of nursing.  I think it's actually a damn shame that they don't already know what it is.  It's a commercially available product (you can get it on amazon) that I knew existed before I ever had a need for it. 

So, that's the update.  Things are going in the right direction. We go back again next week to see how much he's gained on 10 ounces of formula a day.  I hope it's sufficient.

OK.  Cute pictures

Elliott waiting while I'm in the shower on March 5th.  Well, I wasn't in the shower yet because I took this picture.  He started screaming before I even got in.

March 6th

  Elliott is just thrilled.

A balding old man

March 7th

Spencer insisted on having the truck in the picture.

Elliott is wearing a 0-3 month outfit.  The tag said 8 to 12 pounds and he was 8 pounds 2.9 ounces so I attempted it.  The length is just right, it's pretty roomy on him though.

Elliott fell asleep in the sling.  I put him down on the bed so I could go to the bathroom before we nursed.  I was convinced he would wake up when I put him down.  He was really out though.

Michael put him in the infant bouncer chair with activity bar last night.  He was actually entertained by it for about 10 minutes.

He was also showing a lot of interest in the toys on his lion gym.

Today.  March 8th.

Nap time.

I tried him on the lion gym again.

Can you see what he was interested in?

By the way.  Spencer was coughing a lot today.  His asthma is flaring up a little.  I was really tired today.  I let him watch 5 (yes, 5) hours of TV this afternoon.

Mother of the year right here.