On Monday, May 21st we took Elliott to the lab to have blood drawn. It had been close to 2 months since his last blood draw and we were really, really dreading it. Each draw has gotten more and more difficult as he has aged. I started out keeping track of how many draws he had, but once we got above 10 I stopped writing them down.
When he was 1 month old he would sleep right through a blood draw. At 2 months he would fuss a little bit and then easily recover. At 3 months he cried, a lot. Now, at 5 months we could only imagine his horror that we would let these people stick a needle in his arm while we held him down.
Luckily, and to our surprise, it went better than expected. His veins roll a lot (apparently all baby veins do) so they had to poke around a lot to get the needle in the vein, but once they did he was fine.
(I will have random pictures of Elliott from the past 2 weeks throughout this post)
On Thursday, May 24th we had another follow-up with Dr. Miloh and nutrition. This was a big appointment because it was where Dr. Miloh was going to recommend a liver biopsy or not based on Elliott's liver enzyme numbers. A normal level for GGT (a liver enzyme) is 12-120. Elliott's had gotten up to 1,503 at its highest. His other enzymes were elevated too, but not as much.
First, they weighed him. 13 pounds. Then we waited in the exam room. In they came. I was holding my breath.
Dr. Miloh wasted no time in telling us that his bilirubin was normal (total and direct) and they are actually both at the bottom end of normal. They can't go any lower. His ALT and AST were also normal (right smack in the middle of normal). His GGT was 140! Only 18 points above normal.
Dr. Miloh declared him to be officially over his neonatal cholestasis. He has a functional liver. He said, in these exact words, "he is a normal, healthy baby. He does not have any medical problems."
Since none of the testing (ultrasounds and blood work) showed that Elliott had any structural or metabolic issues, the best guess is that Elliott had an immature, not yet functional liver because of his prematurity. Just as it was starting to mature and work (the blood tests from when he had regular jaundice showed his bilirubin levels were starting to improve) he got sepsis and a vulnerable-to-begin-with- liver was all of a sudden forced to contend with filtering a body full of e.coli bacteria. Filtering all that e.coli out of his blood sent his liver into a tailspin and it took him this long to recover.
Dr. Miloh does not expect that he will have any more issues. He told us to stop giving Elliott his liver medication. We're doing one more blood draw and one more follow-up in November, right before Elliott turns one. That blood draw should be a blast. Anyone want to go out for margaritas after it?
The not-so-pleasant nutrition witch lady didn't have much to say. When Elliott was first diagnosed with neonatal cholestasis his weight was 77% what it should have been for his height. His body just could not absorb fat. He is now at 92%. Anything above 90% is considered OK. OK, as in, no need for a feeding tube. I still think that she wasn't happy with his weight and thinks I'm crazy for being so hardcore about nursing.
I asked the nutritionist if there was any reason that Elliott needed to continue receiving pregestimil or if we could supplement with a formula that is easier (not to mention cheaper) to get. She said we should continue with the pregestimil because the MCT oil is still good for him and will help him to grow. Then (and this was the best part of the appointment, other than hearing the good news about Elliott), Dr. Miloh told her she was wrong and Elliott didn't need pregestimil because he no longer has a fat malabsorption problem. He said we could put him on whatever we wanted.
We've been supplementing with pregestimil since February and we've gone through about 15 cans of it. Of those cans we only had to purchase 1. It was $33 dollars, though, so that means we got about $500 of free formula in the form of "samples".
Since we don't have to go back to Dr. Miloh until November and we no longer have to work with the nutritionist (yay!), our pediatrician is back to being completely responsible for Elliott's care. We had an appointment with her today. Elliott gained 13 ounces and 3/4 of an inch in one week. We have changed nothing (well, we did start with a bit of solid food, but not 13 ounces worth) so I take this as real proof that Elliott has a totally functional liver. If he gets to 14 pounds by 6 months (and he totally will-that's 3 ounces in 16 days) he will be AT the 5th Percentile. I will take it!
The plan from here is that we are slowly reducing the pregestimil and changing him to gentlease formula (that is available on the shelf of any store!). We are also going to wean him from duocal over the next 10 days. We'll go back for his 6 month check-up in 18 days and she wants to see how he gains without the duocal. Then we'll reduce the amount of calories in his formula. Right now we mix it to be 26 calories an ounce. We'll go down to 24, then 22 and then 20. Then, as we increase his amount of solid food, we'll decrease the amount of formula. The only problem with this plan is that Elliott is addicted to the supplementer. He likes the immediate flow and the constant flow that you don't get with straight nursing. At this point he will not nurse without it unless he is already full and sleep nursing.
I started using the supplemental nurser, instead of supplementing with bottles, because I plan on nursing past age one. If I have to keep using the supplementer I will. At some point (probably around 12 months) I'll start using water instead of formula. I also hope that he'll be more likely to nurse without it once nursing becomes more for comfort than for food.
Dr. Miloh mentioned to us that it can be difficult to accept that a baby that was once really, really sick is now healthy. He told us that it will be hard to change our frame of mind in thinking that Elliott is really fine. When he told us that I thought, "whatever, I totally accept it. I'm thrilled". Then, about 4 hours later, while I was nursing, I thought, "damn. He was right."
It actually is really hard to change our thinking. In February I was convinced that Elliott was going to die and if he didn't he would need a liver transplant, and even then he still might die. I was ready to have them cut a piece of my liver out to give to him. I spent a lot of time thinking about how I was going to mother this really sick baby and how I was going to mother his brother. I worried about Spencer and how his life would change with a sick sibling or a sibling that died and a mother who would then lose her mind. I worried about the pain and suffering Elliott would face and if he would ever be able to do things like swim lessons and play dates and baby gym class. And now, just 3 short months later, I have nothing to worry about. Really. I don't worry about a lot of the stuff I worried about with Spencer, because it all seems pretty inconsequential with what we have faced. That doesn't mean, though, that I feel any less protective/over protective.
Our pediatrician said that she has worked with families that had sick babies that took until the kid was 2 or 3 to really recover and accept that they were OK. I believe it. I have been worried about Elliott really, since the day I found out I was pregnant, but definitely since December 5th when I went into labor at 33 weeks. It took almost 6 months but I finally feel like I can stop worrying so much. I hope it makes me feel better because worrying is exhausting.
It's weird and wonderful at the same time.