Day 67

Maksim finally had a huge bowel movement this afternoon! His belly is so much smaller and softer! Hooray! His oxygen was decreased to 2.5L on the vapotherm. This is progress, and so far he has been tolerating it well. He also reached 4 pounds again when they weighed him last night. We'll have to see if he stays there this time. :) He has been really sleepy again, and because of this, he didn't get any bottles during the day shift. I wonder if the time change has anything to do with him being off schedule...

I spoke with Dr. Jenkins today about Maksim's last eye exam. He said if his exam this Thursday is worse or unchanged, Logan and I will probably be faced with the decision of whether or not we want to sign the consent for him to receive the injection of Avastin. Avastin is a chemo-therapeutic drug that is FDA approved for the treatment of colo-rectal cancer. Chemo-therapeutic drugs are cytotoxic, which means they cause cell damage or cell death. This medication works for retinopathy of prematurity by stopping the abnormal growth of blood vessels in the eye. Unfortunately, it has the potential to affect all other healthy or normal cells in the body, as well as the ones it is trying to destroy.

The use of Avastin for retinopathy of prematurity is an "off-label" use of the medication, which basically means the FDA has not approved it for the treatment of ROP. Also, it has only been used to treat ROP for about two years, so the long-term effects are not yet known. Here is some verbiage from the consent for treatment: "The goal of treatment is to prevent further loss of vision. The medication may not restore vision that has already been lost, and may not ultimately prevent further loss of vision caused by the disease...Your baby does not have to receive treatment for their condition, although without treatment, these diseases can lead to further vision loss and blindness, sometimes very quickly."

If the ophthalmologist says Maks needs this drug, Logan and I will be forced to make a decision. I am so anti-medication, it is ridiculous. That instinct in me says, "absolutely don't consent to it." However, I don't think I could ever forgive myself if he didn't get it and ended up blind.

Needless to say, Logan and I are not looking forward to making this decision. We are still comforted by the words of the Priesthood blessing he received last week, and we know there is a possibility, especially through faith, that he will have normal vision. We know, and are so thankful, that Maks is remembered in so many families' prayers all throughout the world, and are asking everyone we know, over the next couple of days, to specifically pray that the retinopathy in Maksim's eyes will resolve, and that Logan and I will not be faced with the decision for Maks to receive this risky medication. Thank you all for your prayers and faith.


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