Update #1: Sweetness

Some of you remember me writing about our little niece "Sweetness" (my blog nick-name for her) before, and her traumatic premature birth, and how she has struggled with underdeveloped lungs, etc.  Well, first, look at how big and strong she is now, in this adorable photo with her parents!

Here is what DH's sister wrote a few weeks ago in her ministry newsletter:

[Sweetness] is a great joy. She is a happy, friendly, easy-going baby. She is nine months old (six months corrected age) and 15 pounds. She is healthy and strong overall. I could almost forget she has health concerns except for her ongoing appointments with her pediatrician, pulmonologist, endocrinologist, ophthalmologist, physical therapist, and respiratory therapist. Ugh!

 Last week we learned that her lungs had developed to the point where she no longer needs oxygen when awake! This is a huge step forward for us. She continues to need oxygen whenever sleeping and may for many months. Her pulmonologist feels that reflux may be causing her to aspirate milk into her lungs, thus delaying the healing process. Please pray for her lungs and reflux.

Also, her physical therapist is concerned that her developmental progress is slow and asymmetrical, so has referred us to a pediatric neurologist for an assessment. The issue is whether she could have cerebral palsy. [Uncle S] and I, and most people who see her, think she’s doing just fine—but we will need to find out what the experts think. Please pray for healthy, balanced growth and development.

I had been meaning to post this sooner, so those of you who have been following her story could celebrate in how well she is doing!  But today I received another email, that changes everything.  Auntie N wrote:

This week we found out that our beloved little [Sweetness] has some serious health problems. Her eyes are doing some retracting--"sunsetting"--a sign of hydracephalus (buildup of cerebral spinal fluid in the brain). She then had a brain ultrasound which showed the extra fluid in the extra-axial areas just outside the brain rather than in it. At this point we are not sure where she falls on the hydracephalus spectrum. Traditional hydracephalus typically causes physical and/or mental disability even with a shunt inserted to the brain. On the other hand, benign external hydracephalus causes developmental delays but typically resolves itself in one or two years. Both kinds are often caused by the kind of traumatic birth she had. We know very little about her condition right now but will be seeing a pediatric neurosurgeon on September 1 at Children's Hospital in Denver.

Please pray for us.

Clearly it is even a bigger miracle than any of us realized that Sweetness has made it this far.  I wish you all knew Auntie N and Uncle S, two of the loveliest people I have ever known.  It is so sad that they lost one baby, and now to be so scared about the future of the one that seemed to be just starting to thrive. . . my heart goes out to them.  But just like that Dr. Seuss quotation said a few posts back, so much better to be thankful for having Sweetness survive at all and reach this level of robust baby health--this is a blessing.  She is a blessing.