Sorry for the delay in posting this update, we have had our hands full with our little bundle of energy.
Tuesday morning, the docs pulled MJ off of oxygen again to see how she would do. They told us at the beginning that she needed to handle 5-7 straight days off of any O2 before they would let her go home. Tuesday went great, no drops in her O2 level and labs improving.
The doctors started Mackenzie on a small amount of formula on Wednesday afternoon to start weening her off of the feeding tube. Normally the docs said that they move very slowly in the transition to bottles, but with Mackenzie they wanted to move faster if she was able to digest it. Also, day 2 off the oxygen and no problems.
She did fantastic, no real spit up problems and no issues digesting the food. She did so well that they pulled her feeding tube completely and just gave her some fluids in the IV along with the bottles. They doubled her intake every day working towards a full 2 oz every three hours as the goal for her weight. By Saturday morning they had her up to the full bottles for the weekend. They also pulled her IV Friday afternoon.
All of her labs continued to come back normal except her newborn screen which tests for a variety of rare conditions. That was expected as a result of the meds that she was receiving for the first week or so of life. She continued to rock breathing room air, so the docs told us to expect to come home Monday afternoon pending another EEG and one more lab check.
All went well on Monday and we got to bring our little girl home Monday afternoon. Since we have been home, she has been eating like a champ, we are up to 3.5 ounces at every bottle. Big brother has been great with her and gave her a kiss goodnight tonight before going to bed.
Looking down the road ahead we have multiple followups with the pediatric program at the Children's hospital to check her progress and watch for any developmental challenges. We will also have another Neuro check in July to check her MRI and another EEG. At 6 months they will check her again for any signs of seizures, if none exist then hopefully we can stop the anti-sezure meds. Until then she will keep getting a small does every day as a precaution. Finally, they enrolled us in a program in Meridian that will do a lot of the same things that the hospital will. They will check her in a few weeks and evaluate her for any issues. If there are any they will create a therapy program to work to correct any problems. If none exist, then they will continue to monitor her as well for any challenges.
The final hurdle will hopefully be a test that is administered by a doc at the Children's hospital on her second birthday. If she is still doing as well as she is now, then they will hopefully consider her fully recovered and stop the monitoring process.
We will continue to update with each follow up as we travel this road.