5/16 We have some weight gain!
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The Lange Family
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The Lange Family
We have been getting to the hospital by 9 each morning so that we can be there for rounds. The NICU does family-centered rounds, so sometime between 9-12 they come grab us and we can hear the care team discuss how the twins did in the past 24 hours, all of their vitals, any issues or concerns, and the plan moving forward. They’ve been amazing at stopping for explanations, showing us images of x rays and ultrasounds, and patiently answering any questions we have.
We got a really great report for both twins this morning and they each gained a little bit of weight back! It seems funny to celebrate a difference of 5 grams, but we will take any good news we can get. Beckett had six spells the night before, but they gave him some blood yesterday and it must have been exactly what he needed because he didn’t have any last night. Juliette had a couple last night, but remained pretty stable and happy otherwise. Beckett’s lungs are also showing improvement and him and his sister have both started pooping, which is a great sign that their digestive tracts are in working order and they’re processing their food.
Beckett got another head ultrasound yesterday and we got to talk to the neurologist today. They originally thought he had a grade 3 bleed on one side and a grade 4 on the other. After yesterday’s images, they think it’s actually a grade 4 on both sides. The bad news is that a grade 4 is the most severe level of bleeding. The good news is that the new pictures show that the bleeding has not progressed or spread, and the affected areas can be seen more clearly and definitively. With this type of bleed, some amount of damage has already occurred, but the severity is determined by how the brain reacts and whether the ventricles get larger. Right now, everything is looking stable. They are monitoring him really closely and he will be getting two head ultrasounds a week to keep an eye on everything.
The neurologist told us there is about a 50-70% chance that this will result in some form of Cerebral Palsy and the area that the bleed is in would most likely affect motor function, possibly in the legs. There are so many levels of severity to CP and we have no way of knowing how it could present in the future, so we are just trying to take it one day at a time and hope for more good reports that he had boring, stable nights.
While we won’t be able to hold our babies for a while, the nurses have been excellent at including us in their care. We’ve been able to change their diapers, take their temperatures, rub lotion on them, swab breast milk into their mouths, and provide comfort during tests. We can also reach under the plastic (which is there to help regulate temperature and moisture) and give hand hugs whenever. We have been ending each night with a bedtime story for each twin before we leave.
We truly cannot thank everyone enough for the support that we’ve gotten and everyone’s kind, encouraging words. We’ve been very emotional seeing how quickly everyone has stepped in to provide us with comfort and I don’t think we’ll ever be able to convey how much it has meant to us and the impact it has had. I want to reach out to everyone individually, but it may take a while to gather the energy to do so. In the meantime, know that we appreciate everything so much.
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Teaganeastman
June Stecklein
Molliej321us
Megan Berns
Melissa Haley
Debbie Gross
Debbie Gross
Ashleynlagrow
Aline Comeau
You are strong enough to do this 💕
Debra Kornberg
Kim Moriarity