The 2nd opinion

Earlier this week Lilly had her first bite of pureed sweet potato. This video shows that first bite as she considers it. She has eaten sweet potato again and seems to definitely prefer it over banana. But it closely ties avocado.

We heard back from the surgeon in Charleston, S.C. whom we recently contacted to get a second opinion from about Lilly's heart problems. (VSD and left ventricular hypertrophy.) He reviewed Lilly's records and latest echo with several cardiologists. They concluded that they could not see any reason not to close the VSD. But they want a complete echo done at their office.

What wonderful news! It made me so hopeful!

Lilly woke up at 4-something this morning sounding a bit congested. I cleaned her nose out. She didn't want to get back in her bed so we had some snuggle time. It was such a blessing and well worth missing an hour of sleep.

Lilly didn't have too good a day though. She wanted to be held a lot so I knew she wasn't feeling too good. She spit up thick mucous several times today and I have been busy keeping her nose cleaned out. She seems a bit better this evening though and is very vocal right now.

I haven't put oxygen on her at night for the last couple nights. The oxygen thing has been a toss up. It is supposed to help Lilly sleep more comfortably, etc. But so far, it has only upset her and she doesn't sleep very well with it nor keep the cannula on all night. (That being said I plan to put it on her tonight since she has had more trouble keeping her oxygen levels up today.) I'm wondering if that might change once the NG tube is out of her nose.

Whew ... what a roller coaster ride the Trisomy 18 life is!

"Let the peace that comes from Christ rule in your hearts." - Colossians 3:15