Well, our sweet girl is officially 3 months old on Friday. We haven’t posted a detailed update since we found out Madi’s repair was healing and everything looked well, so here it goes!

Madi was able to come off ECMO on Monday, so that is our BIG praise for the week. ECMO was definitely more intense than we expected. Everyday Madi required lots of blood products to keep her levels good, along with lots of lab work and different types of monitoring. Towards the end of the week she seemed to be bleeding… A LOT. They have to give a continuous flow of heparin (blood thinner) so the machine with the blood in it does not clot! There were times where blood was spraying from her nose and mouth, and she also had blood draining out from her drainage tubes in her neck. She did not resemble the Madi that we have seen everyday or post pictures of so it was a very emotional and nerve racking week and we are so happy to be done with that machine. It did serve it’s purpose and help insure that her repair had time to heal, she will be going back to the OR on Tuesday to have another look at her trachea and esophagus. Although it was a blessing to have the ability to use ECMO and allow her repair time to heal, it didn’t come without complication. This week we heard some pretty scary words “Brain injury” On Tuesday the nurses noticed Madi was having some movement that was concerning them for seizure activity, so she was hooked up to an EEG monitor which monitors her brain activity. They did detect some seizures, so we went for an MRI on Thursday. Friday we found out that she does have a brain injury, that is most likely from the ECMO cannulas. While this was definitely not the news we wanted to hear and were devastated to find this all out, we must praise the Lord that it is not worse. According to the neurologist the tissue in her brain is damaged, but not dead, they actually consider this to be a stroke. The tissue can over time die and then the damage would be permanent. They have started her on a medication and that has stopped the seizure activity for now, but they will continue to monitor it. While we did not want her to have yet another issue to manage, the worst thing that she may lose from this damage is her left peripheral vision. Not ideal, of course, but we can deal with that. Many of the staff have been reassuring as well that babies are resilient and their brains can find ways to compensate for things like this, or ways to work around it. We know even more than her brain being resilient, our God is mighty enough to do whatever he wants with the situation, so we know she may not have any deficit from this at all and that is what we pray! Other than this little set back she has been doing really well this week. They are working towards having her ready to take her breathing tube out, as well as weaning down her medicines she is on. Those would be our two biggest prayer concerns! Babies become “addicted” to these pain medications very easily so she has to be weaned slowly and will go home on some medications that will be weaned over months to come. So we pray she does not have any severe withdrawal symptoms and she can come off of these medicines quickly. Secondly, we pray that her airway is stable enough and she can tolerate being without the breathing tube. She has had the ventilator breathing for her for almost her whole life so she will have to start doing all the work! Please pray specifically for these two areas. We know we will still be here for quite some time until she is able to transition to going home, but each little step gets us closer to that goal! Looking back over these 3 months, sometimes I wonder how we have even made it to this point. It makes me think of that poem “footprints” where when there is only one set of footprints the Lord was carrying you through that trial. That has to be where we have been these last few months, otherwise, we wouldn’t even be able to get out of bed in the morning. God has been so good to us through it all. Sometimes when I question, what is the purpose for all this, that day I will get a message just telling us how God has used this situation to work in someone’s life. I know my faith has increased by leaps and bounds and I have never relied on the Lord more than I do now. I pray that the Lord has used our situation to work in some of your lives as well. No doubt God must have a special plan for Madi, and is already using her to touch other people. I know the amount of people calling unto the Lord on her behalf is extraordinary. We thank you all so much for your support, love and mostly your prayers. We will post some  3 month pictures under the gallery section for you to enjoy of our little sweetie! With lots of prayers and God’s touch, maybe next months pictures will be from home or a lot closer to it!