Update on Lily

I put off posting for a few days, because it isn't as fun to update with news that isn't just that things are going great. Things with the girls are still going very well, but Lily's follow up ultrasound wasn't exactly what we expected. The nurse practitioner tried to explain things to us (as you can see from my post before) but didn't go into the detail that the neonatologist gave us. What we found out, is that the report from one radiologist was worded strange, so Dr. Zac spoke with the pediatric radiologist. They ended up meeting and going over Lily's ultrasound together too.

Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.

So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.

Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.