Short quick info

Kotah is on an apnea monitor. It is proving to be very useful and helpful (which i guess is also scary) We saw the speech therapist and the ent doctor. We've been told she is a special needs baby (in a physical aspect i think as most babies hardly go through and need everything she does) They are trying to get us into a GI doctor next week to schedule a scope which would require anesthesia and a day long hospital stay, as long as nothing goes wrong in the surgery room. It's all still kinda crazy!

A prompting, a dead baby, second hospital stay and nothing wrong

So we were waiting and waiting for the upcoming visit with a cardiologist. Then we received a call Wednesday afternoon saying that they wanted to do the cardiogram Tuesday morning before the appointment. It felt amazing! I was pretty sure the weight of the world had been lifted. At least a small potion.
The past 4-5 days had been a little rough. Dakotah had been turning colors and holding her breath and being really lethargic and just all together being not her normal self. I was guessing it was teeth.
Thursday night, after a fun day, I had gotten Kotah to bed and finished getting everything ready for a fun day the next day. Kotah sleeps in her car seat, in a stroller, right by my head. I had checked on her one last time, after checking on Katie and was settling into bed. Just before I drifted off to sleep, I received a very strong impression to check on Kotah. I turned over and placed my fingers on her soft spot to check for a pulse. This is not a surefire way to check, but it is the first thing I do and a reassuring touch to make sure all is ok. I could not find a pulse. Kotah is the type of baby that wakes up to touches and noise quite easily. I called her name. No response. I turned on the light and pulled her out onto our bed. She was white and cold and clammy. I listened to her chest for a pulse or breath. Nothing.
By this time I was freaking out. I yelled for Ty and started shaking, patting and rubbing her. She started breathing and had a pulse after a few seconds but it took another hour just to get her to become conscious and respond. I was a wreck.
After she was awake, I called her primary care physician after hours line. The nurse that I talked to said to watch her and call the doctor in the morning. I sure as heck wasn't gonna fall back to sleep. Katie woke up and the three of us spent a few hours watching a documentary on Burmese Pythons and their effect on Florida wide life. I was thoroughly grossed out by it. Katie loved it. "Look! It is swallowing a crocodile! Look! The guys cut it open to look at the crocodile! COOOL!" I was looking for a bowl to barf into.
The doctor sent us to Primary's to do an emergency echo cardiogram. It came back normal. But we were admitted for another stay to observe.
Though she did have dips in her sats and a hiccup in her cardio rhythm throughout the night, she was fine. They placed an IV "just in case" and that took forever. The way the techs put it, if they had to place an IV in an emergency, they wouldn't get it in fast enough. It took them about and hour and 3 tries.
This morning they did an EEG which was looking for seizure activity in the brain. That was normal.
They gave us a different specialist this morning. This doctor has worked on studies with children that do the same thing as Kotah. I was so happy and relieved to learn that she is not a rare case! Something about knowing that you're not alone. According to the doc, Dokotahs issues with laryngomalacia, aspiration, reflux and a deformed trachea are the culprits. If all issues present in intensity at the same time, it causes breath holding and color changing. Supposedly something to grow out of.
As for now, we are supposed to do a bunch of follow ups next week and check in with a doctor at least once a week from here on out. While I am glad that they have done everything possible to check for any life-threatening issues, sometimes I feel so helpless. I don't know if I could handle another night like Thursday. Sometimes I am so scarred that we are just going off of borrowed time with Dakotah. I guess we just try to enjoy each moment and not live in fear. And be very very grateful for the Spirits promptings.

Another mystified doctor

We had her 4 month check up today plus a review of how she is doing since the hospital. He has decided that she needs to get an ECG due to her blueness. And even though she can bring a spoon to her mouth, she cannot eat food, because if she gets anything but breast milk aspirated into her lungs, she could get pneumonia and die. So says the doctor to deter me from trying to feed her. At the rate we are going, she might have to hold out til 8 months, or get a tube down her nose, or a tube into her stomach. He was not convinced about her blueness. They will have to put her under to do the ECG because she is supposed to hold still. I so hope that it will be a few hour thing and not a few days thing. She is rolling and trying to crawl. She has gotten her legs down, her arms just get in her way. I am so grateful for my mom and my sister!