So much has happened the last few days with Maddie. First, she is up to her goal amount for her meals. She is now eating 45 ccs, or an ounce and a half, every three hours. She’s digesting all of it (no more spit ups), which is great! Now we just have to get her to take every meal by bottle. As of now, she’s only managed to take all 45 ccs once (when I was feeding her, thank you very much!). The nurses try to get her to eat as much as they can via bottle, and whatever she doesn’t eat is given through “gavage feeding,” which is done through a naso-gastric (NG) tube that goes through her nose into her stomach. We don’t want her to come home with an NG tube, so she needs to start eating all that milk! She’s getting close, though. Since she drank her whole bottle yesterday at 5pm, she has eaten between 30 and 40ccs per feeding! She just gets tired by the end of the feeding, but the hope is as she gets older and stronger, that won’t be an issue anymore. She’s already getting SO big, she’s up to 5 pounds, 9 ounces! I can’t wait until she’s 6 pounds, 2 ounces – double her birth weight. Funny that will be double her birth weight, since most babies weigh more than 6 pounds 2 ounces when they’re born!
She is completely off her IV nutrients and fats and is getting all her all her nutrition via breast milk. Because of this, the doctors removed her PICC line. A PICC line is an IV access point that can be used for a prolonged period of time. Maddie’s was in her arm. It’s so great that she’s off the fluids and her PICC line is out. First, the fluids she was on, while beneficial in helping her grow, could have had a negative effect on her liver. Second, since the PICC line is inserted into her vein, she was at a higher risk for infection. In fact, she actually DID get an infection from her PICC, but the doctors caught it right away and were able to stop the infection before it got bad.
The other big thing that happened is she has been completely removed from all breathing assistance! Her nurse today saw how low her settings were and just took it off! She did great without her nasal cannula – better than the doctors could have possibly hoped. So now the only thing on her face is her NG tube! It’s so awesome to slowly remove things from her face and get a good look at her.
Her nurses and doctors are literally amazed by her. Mike and I were there for rounds tonight and the doctors and nurses just gathered around staring at her. Two of the nurses on the night shift were there when she arrived eight weeks ago and they actually got tears in their eyes when they saw how well she was doing. She is SO CLOSE to being able to come home, and it is so gratifying for the doctors and nurses because they are completely to thank for her survival. They all said that they can’t wait to watch her grow up, and that she is their NICU poster baby. She’s such a miracle, and the product of a lot of hard work and love. We plan to bring her back to UCLA for years so the nurses and doctors can have living proof to never give up.
Sporting a very apropos shirt from her Uncle Kyle