Noah’s Home!

Noah had his MRI last night (8/26). While doing the MRI the bump on the back of his head started to leak a little bit. They consulted with neuro who had them start antibiotics. He had no other leakage from the bump.

This morning we received a call from the neurosurgeon on Noah’s case who informed us that the MRI showed that the bump on the back of his head was not an encephalocele, which means it did not contain any brain matter! Which is good news. He said that the bump appears to be a cyst which they plan to fix.

The plan is for Noah to undergo neurosurgery tomorrow where they will drain the cyst and close it. They will also be placing a shunt for the ventricularomegely. Noah will be intubated for a couple of days after surgery and we plan to be here for at least two more weeks while Noah recovers.

We appreciate everyone’s generosity, prayers and well wishes.

Noah Alan Update: 8/25/2024

Noah is doing better and better each day. He has had all supplemental oxygen removed and breathing so well on his own. Tonight he will receive an MRI and we will meet with Neurology and Neurosurgery tomorrow.

He has been eating well, but does have an NG tube so tube feeding for right now.

Thank you to everyone who has reached out to Lili and I, we appreciate you all very very much. We will continue to update as the days go on!

Noah Alan Update: 08/23/2024

Noah is doing great today! They removed oxygen and he is now doing okay on his own with breathing. An echocardiogram was done today and the fluid around his heart appears to have just disappeared! We are still waiting for an MRI and to make a plan with neurosurgery.

Thank you everyone for prayers and well wishes!

We love you all!

Update:

Noah Alan DeVille was born on August 21st, 2024 at 12:46 weighing 7lb and 3oz. Noah was born 6 weeks premature due to several complication. Noah surprised us and the doctors by showing us he wanted to live and fight. Noah has been moved to the NICU and will have several consultations in the coming days. It is still not known how long he will survive, but he has shown us all he wants to try.

We appreciate everyone who has donated, it really takes a weight off of our shoulders while we focus on Noah.

We will continue to post updates.

Trying to conceive a baby is not always as easy or as fun as most may think. With the girls we were lucky and conceived pretty quickly. But with our beautiful baby boy it took almost a full 2 years of trying and seeing negative tests before we finally got a positive. The months prior had been some of the hardest, we felt so happy, like it was a miracle.

During our 20 week ultrasound they noticed excess fluid on baby’s brain and a cranial abnormality. Immediately we were terrified, stress, anxious, everything. We continued to have hope and believe that baby boy would thrive. Today we had a high risk appointment in Sioux Falls to do a more high tech ultrasound and talk with a maternal fetal medicine doctor. In just the last week his condition has worsened. Baby is now showing a bulge on the right/top of his skull which is due to it being underdeveloped (anencephaly) as well as the severe amount of fluid on his brain (hydrocephalus). He shows minimal brain tissue due to the pressure of the fluid. These things are considered fatal at this point. We are hoping baby boy will make it to 37 weeks for an induction(or possible C-section) at which point he will be on palliative care to limit pain and suffering as we love on him until he passes.

We have been extremely blessed and grateful to have our beautiful girls. We were hoping to finally add our boy to the family. Now we will be planning a funeral and hoping the ultrasound every 4 weeks shows his little heart continuing to beat. I feel him bouncing around, kicking my bladder, loving up on my right kidney and have seen him sleeping on his placenta pillow. We are extremely saddened to hear that we will not be planing a future with our boy, it is evident with the severity of his condition that he most likely will not make it to birth. I won’t be needing a baby shower, a new car seat, crib, swing, anything. We will be entering the hospital to have our baby and leaving without him.

Right now our family is grieving. We are trying to cope with the news and ask to be given time and space. There is nothing that we need or can have anyone do for us at this time. We will continue to update his condition as we go.

At this time it is now known when he will be born, as only 20% of babies born with Encephalocele are born alive, with even fewer surviving after birth. We intend to have a funeral service once we know more.

We are asking for donations to assist with medical cost, lodging during our stays in Sioux Falls for follow up appointment, child care, funeral expenses and costs, other expenses while Lili and I are away from work.

Lili and I want to express our sincere thanks to everyone who has reached out to us during these difficult times, we appreciate all of you and the well wishes.

Venmo: Caleb-DeVille-1

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