Surgery postponed indefinitely

To call today frustrating and emotional is a huge understatement. Last week, we met with one pediatric surgeon who wanted Maddie to be at her best before surgery. So the NICU team started to work hard to wean down her vent settings which sent her into a tail spin more then once. We finally found a place where Maddie was more or less stable and kinda kept her there. Every so often we would try to wean, but then return back to these baseline settings before she could get unstable. We assumed these base settings were her best and expected to get the green light for surgery on Friday.

Then the weekend came and the surgeon on duty over the weekend stated she didn’t want to operate on Maddie if she was at her worst. So we worked really hard all weekend to keep her stabilized and show that she can maintain constant stats. We assumed that some consistency in her stats and settings would show she was not at her worst and expected to get the green light for surgery today.

Then today, new surgeon came on. All day we were told to expect surgery after 4:30PM today and the whole team worked together to prep her (and us) for surgery and keep her stats and settings constant. We had some hiccups throughout the day, especially when 2 babies in her bay started to throw fits and it got really loud. About 3 PM, today’s surgeon came by and said that she doesnt like where the vent settings and NO are at all and that she wants to see her weaned down to a regular ventilator (remember right now Maddie is on a oscillating vent) before she’ll operate - even if that takes a week or more.

We had some emotions to deal with after this conversation. We have requested a family meeting with members from both teams so that we can all get on the same page and start working toward a shared goal. That should take place sometime tomorrow.

Our attending tonight was surprised that Maddie’s surgery was postponed and is working pretty aggressively to make the regular vent work. She’s sitting by Maddie’s bedside (along with the nurse and respiratory therapist), almost constantly adjusting settings to see if we can get Maddie to a nice stable place on the regular vent. I’m pretty in love with this woman right now and her determination to get my baby girl better.

We are frustrated. A lot of what is happening right now is because Maddie’s pre-birth ultrasounds showed such a positive prognosis (remember the 95% survivability we were given?) but she is presenting much worse and much sicker then anyone expected. Much more like a baby with a large hole in their diaphragm and with their liver up. So our whole team is having to switch gears and development a new course of treatment for her. There is speculation that her liver may actually be up and that she will likely need a patch and a chest tube - things we weren’t prepared for.

So I’ve been using this word “stable” quite a bit the last few days. In CDH land, the world we now live in, stable means not in immediate mortal danger. Maddie is in a medically induced coma and is only breathing thanks to the machines and medical professionals who surround her. But each procedure, each time they reposition her tiny body , even her first poop tonight, starts a spiral that would led to her body shutting down if not for immediate intervention. Its scary and overwhelming and heartbreaking. But its our world for right now. I mention this so that you understand that even on good days, even on great days, there are no sighs of relief for us - at least not yet.

I mentioned the other day that we started Maddie on a diuretic to start drawing out some of the fluid she is retaining. This is working great and has really helped bring Maddie’s stats back down to a manageable level. As you can see from the pictures below, the swelling in her face and especially her eyes, went down significantly today. Shes beautiful and so sweet to spend time with and so soft to touch.

Tomorrow Luke and I will take a bit of a break from Maddie’s bedside (don’t worry - her grandparents will be there for us) and spend the day playing with Dillan. There is even the possibility of him spending the night with us in a hotel if it looks like Maddie is going to have a quiet night. I’m so very excited to see him - i may jump out of my skin.

Our prayer requests tonight are numerous and a lot of them are very unspecific. But here are two among the rest

Maddie adjust quickly and safely to the new ventilator so we can move ahead with her treatment plan.
Housing for Luke and I. We lose our boarding room in the hospital tomorrow at noon and dont yet know what the plan will be after that. Likely we will stay in a hotel for up to a week while we wait for room at the family house.

This is a long blog. thank you for loving us enough to read all of it.

This evening - No more swelling

early in the morning - very swollen