Last night they spent time with the baby and felt he was doing better. His blood sugars still fluctuate but don’t seem to dip as low as they used to. They are holding in the normal range (at the low end) longer than they used to.
This morning, my sister called me ecstatic because she was able to feed her son 19 cc’s of milk (1 ounce) from a bottle. This is the most he’s taken in at one time yet. He still has the feeding tube down his nose – which he DID NOT like getting. But it’s there to help supplement his nutrition.
My sister seems hopeful that he is making a good amount of progress. Meanwhile, her doctors told her she could be released today. This is bittersweet since she is looking forward to going home and sleeping in her own bed and working on getting herself feeling back to normal – if that’s even possible after all that’s happened. What mother ever feels completely back to normal even in the most uneventful of circumstances?
“It’s going to be tough and I’m sure there will be a few tears, but we’ll get through it,” my mom commented about my sister’s homecoming without the baby. It’s got to be a very empty feeling in one’s heart and in one’s arms to have to leave the hospital without your newborn baby. My mom experienced this with both my sister and I when we were born, so I have faith she will be just the right person for my sister to lean on today as she gets accustomed to how differently this experience has turned out than how she dreamed it would.
One more piece of information they learned today is that he failed the hearing test in his right ear. He will retake the test in a couple weeks. At this point, this is just another hurdle my sister is taking in stride. She figures she will deal with it once they have re-tested him and know if he indeed has a hearing problem or not.
Another piece of news – for me, anyway – is Aiden’s primary diagnosis has a name: Hyper Insulinemia.
(This is the portion of the blog in which I employ my reporting skills as I share with you far more than you probably care to know about Hyper Insulinemia.)
WHAT IS HYPER INSULINEMIA?
Primary Hyper Insulinemia occurs in 1 in 50,000 live births. It is a rare but important cause of hypoglycemia in infants and children. It is the most common cause of neonatal hypoglycemia that persists beyond the first few hours of life.
Early diagnosis and treatment are essential to prevent seizures and neurological conditions or damage. While it is a condition (that we’ve obviously seen over the last few days) that can be recognized and treated, Neonatal Hyper Insulinemic hypoglycemia is still a severe disease with an important risk to rapidly develop severe mental retardation and epilepsy.
Hyper Insulinemia at birth can develop when the constant supply of high glucose from the placenta is cut off and the newborn’s blood glucose levels fall. This form of Hyper Insulinemia usually resolves after a few days of intravenous drip-feeding of glucose. My nephew is going on 6 days of this treatment. Obviously we do not know yet how long it will take for him to improve but the hope is, once they can stabilize his blood sugar for 48 hours the problem will be resolved. It is rare for it to recur at that point.
In newborns, as long as the blood sugar does not go very low (less than about 35 mg/dl in the first day or so of life, 45 to 50 mg/dl later) and the problem is corrected promptly, there is little risk that low blood sugar will cause brain injury.
Symptoms such as jitteriness or a seizure can be an indication that the blood sugar level has been low and that the brain has been affected (but not necessarily damaged). If a child has no symptoms and is promptly treated, even if that treatment is required for several days, there is little risk that brain injury will occur. Developmental delays could also present themselves depending on the length and severity of the low blood sugar.
Aiden’s blood sugar tested at 14 mg/dl which is considered quite low. I’m not sure how long it remained there; perhaps a couple of hours. It took them nearly 24 hours to get his blood sugar to come up to a reasonable level, and it has continued to fluctuate since. But as far as I know, he did not experience any seizures.
There are several other symptoms of this condition but the related ones I know Aiden DID experience include cyanosis (blue coloring), poor feeding and lethargy.
His additional complications are secondary to this condition right now and will just need to be monitored as he develops.
So now that my sister will be home, new challenges will present themselves as they will not have a home-base in Boston. They live about an hour away. I am not sure how this is going to affect their visiting schedule of the baby or his feeding schedule but I am sure they will figure it out.
I have told my sister several times that having a baby will completely turn her world upside down and her heart inside out. I also liked to tell her that it’s hard enough to bring a baby into this life and try to raise a child when you have a strong, solid marriage, much less one that is rife with problems. Never in my wildest dreams did I imagine she would have a crash course in those feelings. But I am proud of her strength and heartened to hear that during this time of crisis she and her husband have been able to hold each other up and provide each other the kind of love and support that is so crucial right now. I believe the silver lining to these circumstances includes deepening their bond and really bringing together her family.
No comments:
Post a Comment