I didn't know what to put as the title. We owe some updates to you all. In the NICU, no news is good news. So the fact that we haven't posted anything has meant that for a few days Emily and I were patiently watching Ethan and Andrew make some incremental improvements, and rejoicing in each day when absolutely NOTHING went wrong! It was wonderful!
Ethan had been doing wonderfully. Emily was again able to hold him -- she LOVES that, and feels like she could do it all day long if Ethan tolerated it. He definitely knows and loves his mama -- his vital statistics stabilize and improve for the first 30 minutes or so when she holds him. When he gets a little tired, he lets us know and we let him rest. Watching my wife embrace my son, and seeing the sweet expression on her face is my favorite life experience so far second only to marrying her in the first place. Ethan was almost on full feeds.
Andrew has been exceeding expectations fighting the aspergillus. They did a follow up MRI, and surprise -- no signs of infection, fungal or otherwise! They are doing a test to find out if it was ever in there in the first place. We are so proud of him. He is a warrior. He has tolerated his feedings very well also, and was up above 20 mL every 3 hours. Both Ethan and Andrew are over 3 pounds, and have done well with their weight gain.
So now for the bad news. The least bad (ironically, because it stinks) is that in Andrew's MRI they discovered new infarctions (strokes) and hemorrhages (more severe than strokes, but not exactly aneurisms) scattered throughout his brain tissue, in both hemispheres. We kind of expected that there was continued brain damage in addition to his original bilateral grade 4 IVH's because of the difference in his behavior before the acidic blood and after.
Yesterday we also learned that Ethan had a sudden onset of bacterial meningitis. We do not yet know the specific strain, but should find out within a day or two. This morning they discovered bacteria in his blood as well. He has deteriorated rapidly, as we would expect with such severe and sudden infections. We are heartbroken that he has such a significant set back. We are fasting today for him, and invite anyone who is able to join us. The neonatalogist yesterday was willing to give me his estimate of the risk of mortality for Ethan -- about 30%. Those are betting odds, but the new blood infection that will increase Ethan's risk. As far as prognosis goes, medically it is almost certain that he will not walk and talk, and could easily be deaf and blind. Unfortunately, he just does not have much healthy brain tissue left from his previous hemorrhages, so as bad as meningitis is for any preemie, the neonatologist is preparing us for the outcome which is medically likely.
So suddenly, as sick as Andrew is, Ethan is worse. Emily and I are doing well. We have the wonderful support of our family and friends. We wept together last night. I am grateful for the time we have shared with our children. We love them, and are so proud of their incredible and miraculous strength. We have seen Andrew knock on death's door many times, and open it a few times, and he has always come back. Ethan is a great fighter too, and we are hopeful that he will overcome these challenges. If it is his appointed hour, we will be grateful that Heavenly Father let us have him for so long, and grateful for the blessings that will be coming down the road. Our boys are beautiful children, and we are more grateful than words can describe that they are ours. How wonderful it is to be parents! What a wonderful blessing! I love my sons.
P.S. If any of you have crazy unruly teenagers that are giving you grief, please be grateful. :) I hope I can one day complain about my teenagers "borrowing" my car and staying out too late! How quickly life changes. Blessed be the name of the Lord.
5 comments:
Emily-I promised you that I would comment next time I read a post (and stop being a shadow reader). I am SO sorry about Ethan! I will pray for him specifically today that he will overcome this latest setback. Thank you for your examples of faith and patience amidst such hard trials. Your boys are blessed to have such wonderful parents!
It just breaks my heart to read the sad news! You are all continually in our prayers! You 2 are an amazing strength to me and I can't imagine what you must be going through! Thank you for reminding me to enjoy each moment even though sometimes I may feel overwhelmed!
My husband and I have been following your blog. Although I'm practically a complete stranger I hope you don't mind. This brought tears to my eyes. You both have such great faith and help me remember that I complain to much about the blessing I have to be a mother. A great reminder. You are frequently in our prayers.
Leslie Cuppett
Stephen and Emily, You and your boys have been in our thoughts and prayers daily! Thank you so much for keeping us updated when you are so very busy!! You both have been great reminders that our problems are very small. God is with you!!
Love, Norma and Charlie Bawtinheimer
I hope you two know how amazing you are. You have been such an example to me as I read your updates. Your testimonies, and expressions of gratitude to our Heavenly Father have been beautiful! You're in our prayers. I am always hoping for the best...Love, Camille
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