- Lyla was born perfectly healthy on Feb.13th - at a whopping 9.1 lbs and very long - but at some point in the following 2 days she suffered two strokes, caused by blood clots.
- there were no signs until we were about to be discharged from the hospital and she had a seizure. The roller coaster ride began. Many nursers & doctors were called and within the next hour she had 2 more seizures and was admitted to the neonatal intensive care unit.
- we'll probably never know why, or what, caused the clot. There are theories about clots being formed when the umbilical cord is clamped, but it's really a mystery. Since it was a very healthy pregnancy & birth, they didn't keep my placenta, which would have provided more clues. Every test since has come back normal, so there are no answers as to WHY.
- infant stroke is relatively common - odds are 1 in 4,000; but the MRI showed she had matching clots travel to both sides of the brain, causing bilateral damage to the motor cortex on either side. This is very rare, so it's difficult for doctors to predict what it will mean.
- the infant brain is very plastic and still developing, so in many cases the brain can form new pathways around the damaged area. However, there are more unknowns with bilateral stoke - usually if there was damage to one side, the corresponding area on the other side would pick up the slack. But in this case both sides have been damaged, so the unknown is to what extent OTHER areas can pickup the slack.
- she is very healthy in every other way. Tests on her heart, blood, hearing and everything else came back normal. She is very strong, eating well, and sleeping lots. She lifts her head already and is very alert. These are very early, but positive signs.
- we won't know much more until she starts to hit developmental milestones and we can see if she's developing "normally". Since it was the motor cortex, we are mostly watching for her ability to move purposefully.
- in the meantime we will stimulate her brain and encourage physical mobility. The doctors say we should push her, not coddle her. There's no telling how a baby brain can grow and recover. We know she will surprise all those doctors!
- last week we had some encouraging news - one doctor believes that since the motor cortex damage was closer to the brain stem, her risk is more for seizures than for physical limitations. Since seizures can be controlled with medication, this is very promising.
- rest assured we are receiving the very best care. It makes us so grateful to live here where Lyla has every advantage possible. In the hospital and at all our follow-up appointments, the doctors & nurses have been incredible. We have a team of the very best pediatricians to follow up with regularly and ever imaginable test is being done. Soon we'll begin home care with a team of therapists who will assess and address her needs as she develops (primarily physical, occupational and speech therapists).
- big brother Davis has been our ray of sunshine and will no doubt push his little sister to be the best she can. He's already sharing his precious cars with her and giving her lots of hugs and kisses.
Again, much love & thanks to you all, Hayley
