Well, it has been a while since we posted a detailed update… so here it goes! Hold on, because these last few weeks have been CrAzY.

On September 30^th, Madi was extubated for her first time since her repair surgery on September 11^th. She made it until October 3^rd and had to be re-intubated. We strongly feel that when she was extubated this time that she was having withdrawals from some of her medication being weaned and it was all just too much for her. If she was awake she was crying, and if she was crying she was dropping her oxygen and heart rate, so it was a very long few days and we were happy to see her get some rest from having to struggle so hard.

Madi rested up a few days on the ventilator and weaned some more of her medications and we tried extubation again on October 10^th. Every day Madi seemed to improve and Sunday October 12^th was the best day she had in a long time, especially extubated. Unfortunately, Monday morning we received the call that her CO2 had risen very high and she was struggling. This happened pretty sudden and they decided to re-intubate her again. She also had some other strange things happen, and her face was very red and swollen as if she was having a reaction to something. They adjusted some medicines and gave her some steroids and Benadryl and that seemed to help tremendously!

So after this unexpected setback this week the discussion about Madi’s care seemed to go a direction we weren’t too excited to hear about. The road seemed to be headed to her getting a trach put in. We have never really wanted that for Madi, and prayed specifically that she would not need one! However, if she can’t sustain herself breathing independently and manage all her secretions she would have to have one. Monday was a VERY hard day hearing this news, so of course we asked if she could have another chance at extubation and also we wanted to pray about what the Lord wanted us to do. Monday was the first time I have felt “broke” I was struggling to trust, and struggling with the thought of having to make such a huge decision for Madi. Up until this point all the decisions, while we have consented, have more or less been made for us or necessary. This was something we would have to decide, 1. Let her try extubation again, and possibly watch her fail or 2. Go ahead and consent for her to have a trach put in and completely change the care she would need in the future. The things that kept going through our mind were the dangers of letting her try again. She likes to drop her heart rate or “brady” as they call it, which as you can imagine is not a very safe situation. Also if she gets in distress and her CO2 goes too high she can suffer many dangerous things from that. Basically, if she did not do well extubated again she could have to have them intervene to save her life! We didn’t know if we could live with making that decision and know we chose that path if something bad happened. We also couldn’t make the decision on a trach. While a trach is reversible and it isn’t something she may not have to have her whole life, it would completely change the path she would be on. There would be a lot of different things a trach would mean for us. While we have come around to the idea if it was something she would need, we would rather not have to go that route and could not make that choice!

We kept these events and news to ourselves for a day or two and then let our families know that we were most likely facing that decision of having to put in a trach for Madi. We resolved to pray about this decision until the Lord gave us a clear sign of what path He wanted us to go down.

Well when the Lord answers, the Lord definitely answers. For days we have struggled back and forth with this decision, talked to numerous staff members about pro’s and con’s and what they thought, but never did we have peace about either one! So Wednesday night we headed home like any other night to sleep, only to get a call from the hospital around 12:30am. It’s never a good feeling to see the hospital number pop up, especially to be woken up by it. It was our Dr. that night, Dr. McCrory, and he called to tell us, “Madi had pulled out her breathing tube.” Of course, our first reaction was to think, oh no now they will have to reintubate her again. To our surprise he then went on to tell us that they had put her on cpap and she was comfortably breathing without the ventilator. I mean when God shows up, He shows up. So we are officially on Day 3 of extubation round 3 and are very cautiously optimistic. Madi is doing wonderful! Several things are different for her this time around. First, she and God decided when she was ready to be extubated; Second, she is spontaneously coughing. This may not sound like a big deal, but she has never done this before and it is essential to staying off the ventilator or getting a trach, this is the best way for her to clear her secretions. And Third, she has been awake and smiling at EVERYONE, and she will fuss, like a normal baby and calm down and go back to sleep. These are huge steps from the last 2 times she was breathing on her own and was inconsolable.

Our sweet Madi

We could not be more thrilled! We give all the praise and glory to the Lord for the way this week has unfolded. I have had several people, not knowing what happen, tell me they had a dream about Madi or they woke up in the middle of the night on Wednesday to pray for her. It has been amazing so far to know that the Lord orchestrated this whole situation. He knew we could not make the decision, and wanted to do things in His timing. We hope she soars this time and does not have to be reintubated. But even if she does, or even if we have to go with the option of a trach tube, our God is still amazing and answered prayers this week in ways we could not imagine. We couldn’t wait to tell everyone about it, and pray this is a story we can tell over and over about how God did this in his timing, not ours or the doctors.

Please continue to pray for Madi. She is doing great so far, so we are praying she doesn’t tire out. She is almost 4 months old and has spent almost all that time with a machine breathing for her so this is a lot of work for her little body to now take over! We are praying this will be the time that she surprises everyone and continues on stronger and stronger each day! Thank you all for the continued prayers! This week is evidence that the Lord is here with us and keeping his all powerful hand on our sweet Madi.