Author: Mike Costanzo

A Gut-Wrenchingly Hard Day

Today was a gut-wrenchingly hard day. We met with Naomi’s medical team today, and were confronted anew with the severity of her disease. Up until today, we had thought that best-case scenario would be to keep her in the hospital long enough to get all of her internal organ problems repaired, but after today that does not seem like a very realistic scenario. From what we were told today, she may never have some of the key surgeries that we have been anticipating because they may not be possible or effective. She may never feed orally or breathe well, and even with specialized care she may not last long after coming home. That is, assuming that she comes home at all. We won’t go into all the details because it would take us hours to type them up, and would likely leave you feeling as overwhelmed as we do. Long story short, we are casting ourselves on God’s mercy and pleading for His wisdom because ours is totally insufficient. We don’t have to make any decisions now (other than to continue to keep her alive), but when the time comes we will need Jesus’ almighty power to get us through it. This is the hardest thing we’ve ever had to go through, and from what we can tell it’s only going to get harder. Please pray for us. We...

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Some Bad News, But Some Really Good News

Time for another Naomi Grace update! There is some bad news, but some really good news as well: The bad news (which really isn’t news to us) is that further DNA testing has revealed that Naomi does indeed have “full” Trisomy 18. There are 2 other varieties of trisomy 18 (mosaiac and partial) that are less deadly, but much rarer. This makes her overall chances worse, but highlights her recent improvements as being quite unusual, and thus very strong evidence of God’s work in her life. The good news is that the open blood vessel in her chest (the...

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Naomi’s Two Week Update

Everyone, Thank you so much for your continued prayers! Naomi has been doing well overall, so much so that I (Mike) was able to attend a Christian Men’s Retreat this weekend. It was hard being away, but incredibly encouraging and a much-needed recharge. Naomi’s doses of breast milk (through her feeding tube) have been increased twice, which is good. She has also recently had a PICC line added, which will be necessary for the long-term IV access we will need to keep her as healthy as possible. So far she seems to be reacting well to both changes–a big praise! Naomi has a blood vessel just above her heart that has not properly closed (the ductus arteriosus for those interested) and is pumping too much blood into her lungs. There is some evidence that it may be narrowing, but it its still large enough to require surgery. However, her intestines are positioned such that the surgery may not be possible at this time. Please pray that this blood vessel would close on its own as it was designed to do, and for wisdom in knowing what we should do if it does not! Thank you all for standing alongside Naomi in prayer. She may not know it yet, but she is surrounded by thousands of people who love her and are storming the gates of heaven on her behalf!...

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Poop Is Good!

Great news–one of our prayer requests has been answered in a big way! Yesterday Naomi had some special fluid put into her feeding tube to test and see if her intestines are fully connected. Both Jen and I were feeling some anxiety about the results, since we hadn’t heard anything, and were starting to fear that the news was not good. But when we got to the NICU, we learned that Naomi actually pooped–her first poop at 9 days of life! I know it probably sounds like a really weird thing to be celebrating, but the fact that her intestines work is HUGE. It means she can now finally start receiving tiny doses of breast milk–another big improvement! As awesome as this is, keep in mind that she is still facing a number of significant life-threatening problems that will have to be addressed. She’s not out of the woods yet, so we appreciate your continued prayers for her. But we praise God for this latest development, and for the glimmer of hope that He has given us! Lord, please continue to heal her broken little body and cause her to live! Thanks for praying,...

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A Hard But Good Day

Everyone, Thanks so much for your prayers! Today we met with Naomi’s medical team to discuss big-picture questions related to her care. To be honest, it was really hard to once again come face-to-face with the reality of her diagnosis, since the likelihood of her survival is so low. But both of us feel strongly that she has a chance, and until that chance dwindles to zero we want to do everything we can for her. We are so grateful that her medical team is on board with this decision, and that they are working so hard to keep her alive. But what made today a good day in the NICU was the fact that Naomi opened here eyes really big, and then actually smiled at us! And then she did it again. And again…six times! It’s hard to express in words the way the smile of a newborn can warm your heart, especially in the face of such a stark situation. Yet another grace from our heavenly Father! Despite the necessity of today’s meeting, we are working hard at simply taking life with Naomi one day at a time. It is so hard for “planners” like us to deny the desire to think about the future and try to figure out what we can expect next. And yet it is essential for our sanity, and central to the...

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