So we have a nice looooong update for you today, and wanted to say thank you for understanding that we couldn't get one out to you yesterday. We had a sweet visit with Lucille last night and our dear friends Erin and Brett got to see her again for the first time since Mid-January. We loved getting to have them there to see Lucie's progress in person.
Lucie-Lyn is eating very well, as you can tell by the belly and rolls. She is starting to really latch and take a bottle. On Wednesday morning she took all but 5 mL of her 42 mL bottle!!! Amazing, I know! (see pic below.) Her "God Nurse" was so excited and proud that she sent Drea a text with the good news! Last night I even got to feed her from the bottle and she took 15 mLs!! It was so cool! PLUS I got to burp her! When we weighed her last night, she came in at 2,265 grams, or 4 lbs, 15.9 OUNCES! Soooooo close to 5 pounds! haha!
Lucie Pie has been on Nasal SPONT controlling the rate at which she breathes completely on her own since 10am yesterday morning! She had NO desats (dips in her oxygen saturation level) from 1am to 11am this morning! On top of all that, Lucie took another 17mLs from the bottle this morning during her mid-morning feeding. We couldn't be more grateful by how well she has been progressing. Tonight she weighed in at 2285 grams an official 5 lbs 0.6 oz! Because of this extra wonderful chunk ones, her feeds were increased to 45 mL every 3 hours.
As you know, we were so relieved to learn that Lucille's brain bleeds had resolved about three weeks ago, however we knew that her right and left lateral ventricles were still dilated and that they would be following up on how she was progressing. She had a follow up head sono on Monday, and we learned the results today. We have mixed emotions about them. We are still grateful to know that after 3 weeks, Lucie does not have any new brain bleeds, which is awesome. Her right lateral ventricle has had a slight decrease in dilation and is now considered only "mildly" dilated. Her left lateral ventricle, which was "moderately" dilated, (aka more dilated than the right side), had no change. They would like for us to come in and meet with the medical team sometime next week to talk about what this means in the long term for Lucille, and the risks associated with dilated ventricles. They let us know briefly that in cases like this there can always be a chance of developmental risks, one being the possibility of Cerebral Palsy. All in all, at this point, the medical team feels that Lucie's brain looks good, they have a positive outlook and do not feel the need to continue with more head sonos. She will continue to be monitored closely, even after she comes home, and at that point she will have what's called early intervention therapy, which is helpful to assist in getting ahead of any issues that could arise as she reaches developmental milestones. All of this was so hard to hear and kind of scary, but we are just going to try as hard as we can to focus on our precious daughter. We think back over all Lucie has overcome already and know that she is strong, determined, fierce, funny and sassy. We know that she will continue to fight each day and we will be right there along side her, cheering her on, praising God for each triumph. Thanks for being with us through this too. Thank you for continuing to pray for her and for rooting her on from near and far. We love you all! God Bless!
- Los Hicksons