The evening had been nice with Kevin and I holding Annelise, she was giving us smiles, all seemed well. Then after Kevin left to go to the Rainbow House to sleep, Annelise started to become agitated, then started crying and wouldn't be consoled. We changed her diaper, changed her sleeping position, picked her up to hold her, tried to give her the pacifier...can't feed her unfortunately... but tried all the other things we could think of... She wouldn't calm, so they were going to put her back on the ventilator in case she was getting "air hungry", but the ventilator settings were wacky (something super technical that meant something to the respiratory therapist... but I don't remember, so I'll call it wacky) which caused them to decide to do a trach change. They got the trach out and found a mucus plug, then had trouble getting the new trach back in! 😫😱
I can't describe the feeling of watching amazingly skilled professionals have trouble helping your child to breathe... that anxiety, on top of this being our first experience with this kind of emergency, just led to more anxiety and my brain screaming at me "how are you ever going to get through this situation if it happens at home!?!"
I wanted to just go sit in the corner and close my eyes and pray, but I also knew this experience could and should be a learning opportunity if I would make myself watch what was happening. I called Kevin so he could come back to the hospital. Thankfully the rainbow house is just two blocks away.
They finally got a trach in, and got her set up on the cpap setting of the ventilator again. She was having a hard time settling down, with heart rate above 220. I would have a hard time getting calm after an event like that too if I were her! The ordeal caused her temp to spike... So then we had to figure out if that was just a temp from the stressful situation where she had to be swaddled so she wouldn't get her arms in the way of the people working on her... Or if she actually had a temperature😕
With time, the temp came down, thankfully.
I am so grateful that we had the nurse we did last night. Our Annelise whisperer, who will stay with her and talk to her to calm her down. 💜 Annelise loves her 😊
They gave her some meds to help with anxiety and agitation last night, and her heart rate finally came down and she was able to sleep.
Our nurse practitioner calmed me down a bit by putting into perspective that we haven't learned all of the steps in changing a trach yet, and they won't let us go home without knowing how to do it, so in the future, we will have the knowledge in our heads of what to do. Kevin and I had just watched a talk earlier in the evening by John Piper about not being anxious for tomorrow. His words were echoing in my ears, but it was still so hard to be okay with not being able to help my girl when she needs to breathe. I'm not OK with that! But she's in a place where people are so good at providing respiratory support, and we'll get better at helping her with it too. Tomorrow after tomorrow, God will give us the mercies that we need... And I'm hoping that if this post ever comes up in my fb memories... I'll be in a totally different place, and barely able to remember a time when trach cares didn't come naturally. I'm sure an emergency trach change will never be an easy thing to go through, but we can change and become people who will take charge and do the hard thing in order to earn the prize of breath for our babe!
Here's a link to the John Piper talk:
John Piper talk - Don't be anxious
And some cute pics, because yesterday was actually pretty good! She had her first sit-up time in her boppy.
I can't let a giant "yes" answer to prayer go unmentioned. Her x-ray looked better today than yesterday! And we have the most amazing neonatologist with us this week. She has God given wisdom and she's so knowledgeable about babies with trisomies. She said as of today, there is a zero to negative 100 percent chance that she would put a chest tube back in. ♥️🤩
Another "yes" answer is that Annelise is resting well. They are giving her a day of rest, and moving forward this week, plan to change one thing at a time. I'm totally OK with slow and steady!
More blessings, if I stop to count them, are multiple days with one of our most best ever daytime nurses. More connections with other families here, a solid faith, and a palpable love by our community for our sweet girl, through all the ups and downs. We know this baby girl's life is changing more hearts than just our own. I feel honored to be her mother. Super freaked out by the task of it, sure....but also in the big picture, confident that this task has been assigned by the Lord, and anything that we do with and for God, we won't do alone, will be for our good ultimately, and will bring Him glory.
I'm just waiting for my heart and emotions to catch up to what I know in my head!
