Ender had a wild weekend. His MRI came back Sunday showing very grim results. His clot had grown and swelling in his brain had increased causing severe damage to his brain. Libby and I had a very rough Sunday Evening, we ended up sleeping at the hospital. Monday, our Attending and a Neurologist came in and gave us another lease on life. The Neurologist said that she disagreed with the previous night's radiologist. She thought that Ender's clot had actually not grown and swelling had not increased. She wanted another set of eyes, so she sent away for the chief of Neuro-Radiology to take a look. He agreed. Ender had another MRI Tuesday, this time with dye. The results came back that the clot had not grown and that there was no damage they could see in his brain. As you can imagine, we were incredibly happy by this news, it really gave us hope for the future. Ender will continue to have brain ultrasounds 2 times a week and will have another MRI in the future to ensure that the clot is not growing and that his body is rerouting blood around the clot. The Neurologist also did a physical assessment of Ender. She reported that he responds to touch and his limbs and facial movements appear to be healthy. Ender is being cycled off his anti seizure meds, which will liven him up and they can extubate him so we can get some better pics! Libby and I are head over heals in love with these kids.
Rooney is currently 3 lbs 4 oz (Ender is 3 lbs 8 oz). She started her feeds on Monday. She was getting 3 ml of breast milk every 3 hours. On Tuesday, she was increased to 6 ml per 3 hours, slowly increasing to make sure her intestines could take it. Today, she had 15 ml still in her stomach at feed time. The docs took an xray to see if she was having issues, but it turned out she was really constipated! The nurse tried to coax a poop on by taking her temperature and then giving her a suppository. I have said Rooney is a grumpy old man before, but you should see her after that! Hopefully she poops soon.
Ender
Atlee & Libby... those kids are SO BEAUTIFUL! How can you help but be in love! I am so sorry that your emotions are on such a roller coaster ride - how much can one take?! But so happy to hear the follow-up report. You really can't lose hope, because Ender will do what Ender will do. And he's a fighter! Glad to hear your mom is coming out again. Wish I could too!
ReplyDeleteSo delighted to read better news!!! They are both so beautiful. I bet you can't wait to get a really good look at them, without tubes and tape and etc. Meanwhile, cuddle all you can and know there are lots of us praying for each one of you all.the.time.
ReplyDeleteSo glad to read this update today! We've been checking the blog regularly and were anxious for more news. Lots of love and prayers for all four of you from south of the border.
ReplyDeleteSo happy to hear that news!!! Constantly thinking of you guys!!! Ender & Rooney are so beautiful!!! I think I see a little smile on Rooney's face in the 4th to last picture! 😊
ReplyDeleteSo happy for the good news! They are adorable
ReplyDeleteGood luck with the poop, Rooney! So glad to read that the first neurologist read Enders scan wrong though I would have thought someone would get a second opinion before delivering news like that to parents about their child. Sending lots of love to you all
ReplyDeleteOh my goodness, that must have been so hard. So glad to hear that you got better news after all. I wish I could express better how whatever happens, there will, and likely soon, be times where you are just cuddling those sweet twins and enjoying them without such tremendous stress and fear. Even if things don't go perfectly- you will love them in a way that is special and wonderful in its' simple ordinary-ness. I rmember a doc in the NICU, a dad of three boys, who said, "oh my goodness, you guys. You are going to have SO MUCH FUN with these two!" It seemed absurd at the time, and also comforting, and he was so right. Much love to you all.
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