Life after losing my baby : NICU Series Lua part 2

After we heard the options of either letting our daughter go, or get her the trach, we asked many people around for other options, we were told from some doctors we should give it another try to extubate her before making the final decision, and some said we should just go ahead with the trach. My husband was sure she could breathe on her own if she just got a little bigger or maybe this time they could try something different when they extubated her. We went ahead and did another extubation, but the doctor doing it didn't want to try as hard as the first doctor and as soon as she couldn't do it, they started the intubating process again. When they bent her neck back to put the tube back in, she was able to breathe on her own, but the problem is they way she was able to breathe with out extra support was not secure enough for her to go home. We proceeded with the trach and gtube surgeries and at 4 weeks old she got her trach put in.
When she came back with her trach, we were told to go head and get lunch or whatever we want because she was pretty heavily sedated and would probably sleep for the next 2 hours. Yeah, it was like 20 mins and she started opening her eyes. I told the nurse but she rolled her eyes at me and then I said, look, she's awake! "Oh well I guess she is." Not a favorite nurse of mine...
Anyway, she was a trooper, and she wasn't going to miss a second of her time on earth.
We started learning all the cares and things we would have to do with her. Everyone has secretions, we clear them by coughing, or swallowing... when you have a trach, you need to be suctioned to get the secretions out... SUCTIONED! A catheter down her little tube, quick enough to not stop her from breathing for too long, but not too quick so you miss anything. I felt like I almost died when they showed me what had to be done the first time. There was no way. Noooooo way, I would be able to do this when I took her home. I was sorry to her but, when I saw everything that needed to be done I just came to the terms that we would never leave the hospital!
The next few days I had this amazing nurse who sat down with me and went through a book of all the cares and explained to me how everything worked and that helped so insanely much! I started to feel way more comfortable with everything we had to do.
The next process was to see if she could breathe with out having the vent. If she needed the vent, we would not be able to go home until she was 10lbs because that is what the home vents could support. We really wanted her to be on the trach collar, and the trach collar is tubing that gives humidified air for her trach, since she isnt using her nose to humidify like we do. This was a huge stressful time! We so badly wanted to go home, and she needed to be off the vent all the time for like 2 weeks before she could go home.
We started with 2 hours, and when she was put on it, she acted like nothing even happened to her! She did amazing, she jumped to 4 hours pretty quickly, and she was on her way!!! She blew me away how well she could do with out the vent! Then we hit the 6 hour mark and disaster struck!
A nurse she had off and on during the weekend came in, and she decided to do Lua's trach cares on her own, even though no nurse was suppose to be doing her trach cares because me and my husband requested to do all of them so we could get as much practice as possible! While this nurse was doing the trach cares, she sat Lua up totally and Lua's oxygen dropped! She started struggling and it took them a bit to get her back up. This nurse was claiming that Lua just couldn't handle the trach collar and needed to be on the vent. Up until this point Lua had Never been sat up totally like how she did it. Not even during her therapies. We had been slowly working on it but had not gotten to that position. Now this nurse is running her mouth telling all the doctors that she couldn't take it and they stopped with the trach collar. This incident cost us probably an extra 2 weeks in the NICU all because she was so sure she knew what was best. She told us this is the only way you are ever suppose to do trach cares, and that was 100% wrong! We ended up requesting to not get this nurse again, which was disappointing because before this we really did like her.
After a break for a few days, they decided to go back at it with the trials. She again went super fast through all the hours until she hit 6 again!!! I got a call at 6:30 that she had a fever since about 3am. Again they stopped the trials, she got her first antibiotics, and all tests came back looking good so I guess it was just a random type thing. But now we have almost every doctor saying Lua wasn't going to be able to get off the vent.
Then something magical happened. We got a new doctor! He came in, he questioned why she wasnt doing the 6 hour mark. They were giving him all the reasons and things that happened and he disagreed, he said we don't know if she is not able to do it, or if she was having other issues come up. So he got a new monitor on her, one that monitors her carbon dioxide and it turns out that she was keeping those levels at a good range!
In the mean time, while we worked on getting off the vent, Lua kept improving with her therapies, her legs started straightening out very well! Her little feets were almost perfect! And she started getting water therapy! Where she could move in there! She was the first baby to get to go in the little whirl pool! Then we worked with secretions that liked to bubble out he trach!!!! We debated doing something to help with her secretions, but I don't know, I got the feeling they were lazy with us because we were almost on our way out and ended up doing nothing to help her with them.
And to top everything off, 2 weeks before we were able to go home, Lua had her gtube button changed out and then she started throwing up! I didn't even know she could throw up! But she started doing it. She got to have a trip down to get her belly looked at, which was awesomely nerve wrecking for me! But she did fine, of course she did, she always blew me away with all the things she could tackle.
We had to fight with the trach team over and over to get nursing set up and for them to get a date to let her go home, but we were getting close to going home!!! We got a home nurse, she only lasted 3 weeks though, and we were learning about all our equipment we would go home with. The next step was to have our independent care, which meant staying in a room with her by ourselves, with our own equipment, doing everything alone, and overnight!
It was never wrecking, but it went really well! She did great, she was the best sleeper! Her pulse ox did say she dropped her stats a little bit there, but her hospital one didn't drop, so that was a bit confusing and scary!!! We worked it out! Lua then had her car seat trail, where she had to tolerate being in her car seat for the length of the drive home, 3 hours, and then we finally had a date set! June 16, almost 3 months exactly that we stayed in the NICU. Looking back, I would have stayed there forever if I would have gotten to keep her.

First time seeing my baby with out her breathing tubes