Wow… can you believe it has been over a year since we received the news that our sweet Madi may have a birth defect that would need surgery when she was born. We remember starting our posts and updating everyone of our weekly appointments. Things sure have changed. I was reading through a post from a little less than a year ago when we found out that the seemingly small problem we thought Madi had was a much larger, more serious issue. (See that update below) Continue reading »

Happy March! This has been a wonderful month so far for Madi. She had her follow up appointments on Monday with her ENT surgeon, Dr Evans and her pulmonologist Dr Karlson. Her appointment went fantastic 🙂 Her blood gas, which measures her CO2 levels and her blood ph, was the lowest it has ever been. It was actually lower than normal levels, so for Madi that is amazing. She had a scope done in the office and her trachea looked great. She still has the malacia where her airway will collapse but it is getting better. If everything continues going as well as it is they have mentioned trying to wean her off the ventilator for an hour a day to start with in June. She is still weaning on her medications, which is going well for right now. It always gets harder right before she ends the medications so by the end of the month she should be almost off one. Regardless she has made amazing progress, she came home one 21mg of that medicine a day and is now down to under 5mg a day! Our prayer is that Madi won’t need the support of the ventilator much longer. Boy would our lives be much simpler, we could come and go a little more freely and more easily!

As far as Madi’s stomach issues go… up until about 3 weeks ago we had her stomach to drain. Which means anything that was in her stomach ie: acid, saliva, would drain into a diaper or container so she wouldn’t reflux it. We have been able to close that and keep it closed and she is doing great with it! If this continues on like this then our prayer is that we can soon feed her stomach and not keep feeding her small intestine. This may mean she wouldn’t have to be hooked up to the feeding pump 24/7. Also the G tube is much easier to replace, I accidentally popped it out last week and you just pop it back in, unlike her J tube where we have to go to the emergency room to have it put back in.

It is so nice to be looking at life getting easier for us and Madi. She is loving life right now, smiling all the time 🙂 Her physical therapy is really coming along, and while she is behind she is making great strides! We couldn’t be happier with her progress right now!

Thank you all for your continued prayers, it is wonderful to watch God answering them one by one. Madi is nothing short of a miracle and we thank the Lord for her every day! We look forward to updating everyone with more positive news as it comes along!

If you would have asked us a year ago anything about a trachea, esophagus, ECMO, breathing tubes etc we would have not know very much. It is scary how much information we have absorbed in a short amount of time. Madi has been doing fantastic! She has kept us very busy in February so far. There were a couple days she had scheduled appointments, normally several each day, and she pulled her J tube out of her intestine and had to go to the emergency room to have it put back in one day. You know your daughter has spent way to much time in the hospital when the ER nurse says, “Is this Madi that spent a lot of time in the PICU, I have heard a lot about her.” Madi is still weaning down on her medications. Continue reading »

Well as promised, but 3 weeks behind, here is our update! Madi has been home 3 weeks today, we can not believe it has already been 3 weeks! We will start and tell you how the discharge and first weeks home have been and we also had our first outing and dr’s appointments today! Madi came home on December 22nd, in style riding in an ambulance. Honestly, I was nervous about bringing her home, I was afraid that we would have all these emergencies or things we didn’t know what to do or how to handle them, and thank the Lord it has not been like that at all. Just being home and in our environment has been amazing. Continue reading »

Today marks 3 months since Madi had her second repair surgery! It seems like so long ago some days and not on others! We have had a busy week and will be pretty busy in the weeks to come. Big news for this week, Madi is off all of her drips! That means the only medicines she is getting are being delivered through her J tube. She had a new, longer J tube put in on Tuesday because she kept having problems with her other one leaking and so far this one has been much better! Continue reading »