Today was another day of progress for Ella.
Her food was switched to 50% breast milk and 50% Similac 27 calorie. Also, the total fluid intake went up slightly. All of this in an effort to getting her to intake the maximum amount of fluid with the most calories suited to her condition. They were able to obtain a recipe for mixing the formula to 27 calories, which will work well for Ella at home. She has been tolerating the bolus feeds with no problem; this is great since it means we can spend less time on feeding sessions.
Ella had her first hearing test this morning. They placed 4 sensor leads on her head and a devise in her each ear, one at a time. I was curious how they conducted infant hearing tests. They liken it to an EEG, where it tracks the actual activity throughout the brain. They test it at various decibels to ensure proper hearing. They were able to tell us the results right away – – she passed her hearing tests in both ears! Since CDH babies inherently carry risks for hearing loss, she will need to be retested every 6 months to monitor her hearing.
The cardiologist came by to take a listen to Ella and explain the pulmonary hypertension. He told me that she has two conditions that are causing the pulmonary hypertension: Patent Foramen Ovale (PFO) and Patent Ductus Arteriosus (PDA). Also, he informed me that Ella will need to have an echocardiogram performed initially about 2 times per month. They will need to keep a close watch to maintain blood flow and oxygen levels and adjust her medicine as she gains weight. Also, if the patent ductus arteriosus (PDA) does not close on its own, she may need to have a corrective surgery for the heart defect(s) by the time she turns 1 year old.
Ella tried some oral feeding with the occupational therapist today and did not respond real well. It frustrated her and she got upset during the session with several crying spells. We will try again tomorrow; she may have just been too tired to try something so new. Either way, I was happy to see that even during her crying spells, she was maintaining her saturations in the 90s. Before, it took very little for her to lose it completely and down spiral into a mode of being completely air starved. But she is getting stronger and the combinations of medicines are helping her so much.
We are gathering our last minute items that we will need for the house, such as sterile water and syringes for medicine administration. Tomorrow, I will be picking up all her prescriptions. She will be taking Reglan, Bumex, Diamox and Sildenifil.
We will be discussing options for home oxygen solutions tomorrow. We hope to have a liquid oxygen system, because of the advantages of portability. However, we are still not sure if that is covered by insurance (versus a standard oxygen compressor) or if any of the home oxygen suppliers in this area even carry it.
Some of you have wondered how long Ella will remain on oxygen. As you have seen, many of these decisions are ultimately based on how Ella responds. Going off her history and what we know of her so far, there is a good chance that she will be on it for at least another year, if not longer. Keep in mind that going back to Denver is also going to delay her ability to wean off the oxygen support, due to the altitude.
The primary nurse practitioner came back today. She has been great and is trying her best to make sure all the details are buttoned up, so that we can be discharged sooner versus later. The latest word on discharge could be as early as Friday or as late as Monday. They do not discharge babies over the weekend, but we are pretty sure it will be one of those two days.
We would prefer Friday not only because it is sooner, but it would also give us the weekend to hang out with her and become accustomed to her care as new parents together. Either way, we are only a few days away from bringing home the Bun. We should have a final answer sometime tomorrow.
When I took Josh back to visit this evening with Ella, we decided to give her a bath. This has become her routine before going to bed for the night. This time, I let Daddy be more involved with the bath. He had a great time with Ella, as the pictures demonstrate.
Some of Ella’s biggest fans in the NICU have started to come by her bedside and say their well wishes over the past few days. Some nurses who only took care of her a few times, to those who took care of her many times. Tonight, she was giving lots and lots of smiles to Nurse Janet and Nurse Michelle who are part of her core nursing team. Also, Roger (who worked her ECMO pump way back in late July and August) came by to take a peek at her progress. One thing is for sure: Ella LOVES all the attention. She is going to miss all her friends in the NICU. It is all she has ever known.
We continue to be in awe of Ella and how far the Lord has brought her. She has been through so much and is such a strong little girl.
Thanks for the continued prayers for all three of us. We look forward to the next chapter of our journey and allowing you to continue along with us in heart and spirit.
