These last few weeks have been some of the most stressful weeks of our lives. Our last update we posted, Madi had self extubated and was doing fantastic. That continued on until last Monday, and she didn’t have the best day, followed by Tuesday which was not a good day either. She unfortunately had to be re-intubated on Wednesday morning.  So we are a week from all of that happening… After she was intubated again, they had to heavily sedate her to keep her from pulling her tube out and moving all around trying to fight it. So all the weaning of medications we had done quickly “went out the window.” There was still discussion as to whether we should give her a trach or let her try extubation again since we were unsure what all happened to make her not be able to continue. One theory is that she got sick, another is weaning the medicine, and then there is we just don’t know why. So Monday she had a CT scan to get images of her chest so we might have a measurement if we needed to go with a trach. The CT revealed some things about her left lung that we didn’t know, we knew a little of the problem but not to the extent it was. I will try and explain. When your trachea goes down it splints into two branches, your left and right main stems (bronchus). Everyone’s left bronchus is longer and smaller however Madi’s is extremely long and even goes down to 2mm at one spot. The problem with this is it is harder for her to push air in there and also to push air out of there. So Monday evening we left having discussed the option that if she could not extubate and breath on her own we may have to open up her chest, cut the bad 2mm spot out and reattach it and hopefully that would ease some of her breathing distress. Yesterday she had a bronchoscopy, where they take her to the OR and run the camera down her throat to check everything. We received some more devastating news that part of her repair is damaged and will require another surgery to have it fixed as well. Originally she had a type 4 cleft which is the worst you can have, now after the erosion of her repair she has a type 2. This is serious but also something that we can fix later.  Obviously our concern is that there be no more breakdown of the repair. The major concern with that is that her being intubated and the pressure from the breathing tube could have caused her this damage; that is not certain but could just be part of the reason. So the biggest goal at this point is for her to stay extubated and keep breathing on her own. The problem with that is if she gets agitated at all she works harder to breath and doesn’t do well, so she is again up on her sedative medicines, much higher than she was last time. This has been the first time we have not really had a long term plan… We have no idea what the future holds or what all of this means for Madi. Before Madi had to be re-intubated she would have episodes where her CO2 would rise very quickly and very high, along with her oxygen dropping and or PH in her blood dropping very low. This is VERY dangerous for her and basically means without immediate intervention they would be starting chest compressions and we could lose her, or have irreparable damage happen.  This is a big fear of ours, so while she is extubated they are monitoring her closely, but it is a real possibility. Things change so quickly as we saw last week, and after 16 good days she had to be intubated again. Please pray for her and us. We really don’t know more than that we are trying to keep her extubated for now and if she had to be intubated keep it short and then try extubating her again. She will remain sedated, and the goal is to let her grow and heal as much as we can. She will be in the hospital for a very long time. We sure don’t know why all of this is happening, but we trust the Lord and that He knows what is best and through all of this He ultimately will be glorified and honored. Whether he allows Madi to get well and live a healthy full life or whether He chooses for that not to be the case, we will still trust Him and praise Him. We love our sweet girl so so much and ask that you would please pray for her, our family, and her medical team. We will update as we can, and when we can.