Lily's journey to a stronger heart - 2

Wow it has been a crazy few days. Sorry I have not posted, I know most of you follow what's going on through facebook - although it is not a very detailed report.

So lets go back to Thursday - this was a bad day. She coughed the entire night Wednesday and all day Thursday. Every time her little eyes would close she would wake up with the most awful cough. She was SO tied and miserable (momma was a little tied too). I felt so helpless. Thursday night the wonderful nurses (Amanda and Pam) took Lily with them out to the nurses station so I could get some much needed sleep. She continued to cough, we gave her breathing nebulizers and benadryl (which didn't do much). At 5am they finally gave her some tylenol with codeine and she fell asleep.

Friday - she continued to cough but not as bad as the medicine was suppressing it, but she was tiring out, she was working harder to breath, she was so lethargic, I was getting very concerned. Her oxygen saturation's were dropping very low, so that evening they decided to try some oxygen. This is something the doctors had been holding off on as heart and lungs are very fragile and they were worried to much oxygen would force fluid into her lungs and cause pulmonary edema. Because we have no history of what has really happened to Lily over the last 2 years we don't know what her little body has already had to indore and if there has been damage to her lungs or not - the doctors are making decisions based on incomplete information.
Initially the oxygen seemed to ease her breathing her oxygen levels rose, we had her on the tiniest amount of oxygen, but after a couple of hours her breathing started to get really bad, it was so loud and she was retracting (using her abd muscles to breath), she also spiked a fever. They did a chest x-ray and her lungs looked worse - what we had feared happened she had pulmonary edema. At 3am we were immediately transferred to the ICU, she was given lasix to get the fluid off. They placed her on a high flow nasal cannula, which gave more pressure than oxygen. After a while her breathing slowed down.

Saturday - she continued to breath easier, they continued to watch her closer and adjust things as they needed, she actually began to relax and even play a little. You know I felt she was doing better because I even went home to sleep, and Chris spent the night with her. Ahhh much needed rest and a chance to see my other kiddo's - who have been just amazing through this.

Sunday - today has been like watching a miracle unfold. She has played - not with toys, but paper of coarse. I have had her up holding her and in her swing. She has interacted with me and smiled at me. She is on no oxygen (she actually pulled it off) and her saturation's are in the 70's normal for her (at her lowest she was 20's), her breathing is so much calmer. She still has a cough but it is so much better. I am so grateful to God.

Tomorrow we will probably go back to the general pediatric unit, and switch our focus back to her nutrition and gaining weight. We will probably be here for a good part of this week.

Later I will share about the plans for her heart, but for right now I just wanted you all to know the miracle we are celebrating.

The doctors and nurses have been amazing - we can not express adequately how grateful we are for the care they have given Lily.

I feel like this was a dry run for when she has open heart surgery, maybe that will be a breeze after this.

Thank you so much for all your words of encouragement and prayers - it really helps.