I am way past tired so please forgive me for not proofreading. I hope this makes some sense.
Yesterday was "very eventful" for Natalie. We received a call from her doctor in the morning letting us know she had experienced some acute breathing issues in the early morning and they had to escalate her care. By the time we arrived at the hospital they were maximizing her respiratory support. This is incredibly frightening as there is no where else to go when things are already at their highest settings. The rest of the day was spent trying to hold on and get Natalie stabilized. She was put on an oscillating ventilator in the morning when the conventional vent failed to work for her. They also started her on inhaled nitric oxide (NO). The NO is what seemed to make the biggest difference and she showed a great response. When the doctor came to tell me her oxygen requirements first came down after the NO we stood in the hallway hugging. It is so comforting to have doctors emotionally invested in the care of your child.
The doctor met with us last night and offered her assurance that she felt this was something Natalie could pull through. They feel that the PDA (now closed), ibuprofen and immature hypoplastic lungs all became too much for her to take on at once. The oscillating vent and NO seem to be just what she needs right now. The NO dilates the blood vessels in her lungs and makes them less "twitchy." The oscillating vent takes about 700 breaths a minute for her and keeps her lungs open gently.
Yesterday four people attempted multiple times to place an arterial line. Thankfully one is now in place so they can monitor her blood gases more accurately and sample her blood without multiple sticks. She is also sedated to allow her body time to rest and let the vent do its job.
Since last night she continues to improve and is now at 33% oxygen (down from 100% yesterday) and they have slowly started to wean her from the NO. They plan to move very slowly and gently from this point. Our hope is that she has a great time of stability so that her lungs will grow and produce more normal alveoli.
We saw Natalie this evening and she is as beautiful as ever. We only looked briefly as lifting the quilt to her incubator can be agitating for her and she needs as much peace and calm as possible.
We ask for your continued prayers for Natalie's health and for our family to have the strength to face the battles of the NICU. Yesterday as we finally made it to bed we both looked at one another and the consensus was "worst day of our lives." Life in the NICU can mean being thrown from one extreme emotion to another and it is more challenging than we thought possible.
Last night I reminded myself of all the things I have to be grateful for. The love and support of our family, the radiance of Anneliese, the strength of my marriage and the tenacity of Natalie. We have so much to hold onto right now and that makes all the difference.
Again, I will try to update as much as possible. Right now I am trying my best to regroup physically and spend as much of my awake time at home with Anneliese. We are enjoying being back together at home and she has been my constant companion. I will leave you with the song she made up for me the first night I was home. "I hugged you and you hugged me....we're together and I loooove you."