We arrived at the hospital this morning and discovered that Harper was already in surgery! They decided to take her back first since she’s so young. The surgery went great. They removed the external shunt from the left side due to a blood clot. They think the clot formed due to the blood pressure issues Harper had following last week’s surgery. They’ve opted to give the clot time to break down on its own due to all of the hemorrhaging she had on that side in her first surgery. They made an incision on the right side and inserted a new external shunt and cleaned out what they were able to on that side… The incision made on that side can be used in the future for either a tap system or an internal shunt if either are deemed necessary.

So, now what? We wait again… They’ll be monitoring her head pressure and fluid output to make a decision about what to do next… If it goes wonderfully, they could eventually remove the tube completely and be done. The other options are either a tap system that involves a needle in place to tap out fluid on a daily basis instead of constantly, or an internal shunt. We also are waiting to see her ventricle size go down so that her brain can stretch back into the appropriate space, and we are expecting pathology reports this week to determine more about the cystic systems she had. And, naturally, at this point we are back to praying for a smooth recovery… No blood pressure issues, no bleeding or need for blood/plasma products, no seizures, etc. It’s a lot to take in and process, but we know Who is ultimately in control of our little girl!

Today started off amazingly- they took Harper off of the EEG, decreased her meds, and had her down to a minimal usage on the ventilator. The fluid draining from her head was also decreasing, and they told us that in a couple of days they would make a decision about removing the external shunt, and it looked like she would not need an internal shunt.

Then this evening they took her back for yet another C/T scan, and the news was not as positive. Her ventricle is enlarged again due to fluid build-up, and the tube for the external shunt has become clogged due to blood clots from her previous surgeries. So, tomorrow we go into our third brain surgery in two weeks, this time removing the external shunt from the left side, making a new incision, and inserting a new external shunt in the right side. Prayers appreciated…

No major news today… Harper is still heavily sedated, which means she’s resting comfortably. They’re cutting back on the amount of blood and plasma products she is receiving, so that’s a positive step, and she is already back to a minimal use of the ventilator. However, they are keeping the breathing tube in for a while in the event that she ends up needing another surgery. Her drainage is going well- less fluid is coming out, which is a good sign, and the doctor told us again today that they’re remaining hopeful that she will not end up needing a long-term shunt. Harper continued to show some small seizure activity on the EEG through the night/morning, so they’ve made some med changes to keep that under control, and there were no seizures recorded this afternoon. As of today, the plan is to take it slow and easy with her, carefully managing her pain level, closely monitoring her fluid drainage, and keeping the seizures under control. Pray on, prayer warriors… The prayers are working, and we are overwhelmed by your encouragement and support.

Today Harper’s swelling has decreased significantly and she’s looking more like herself again. She remains stable… She’s on a morphine drip for pain, and is currently hooked up to the EEG machine and is on a low dose of anti-seizure medication. She is still on the ventilator but is slowly decreasing her dependence on it. She has a catheter in her head to drain the fluid and decrease the pressure on her brain, and so far that’s going just as it should. The nurse told us tonight that the catheter would be in place until she was in a better position to have a shunt put in, but the doctor told us yesterday that the ultimate hope is that a shunt won’t be necessary- we’re holding on to that hope! Thanks for continuing to pray with us…

Today has had its share of ups and downs. Both big sisters got to see Harper a couple of times, and they were amazing with her. We worried about it being too scary for them, but they were curious about all of her boo-boos and gadgets and of course went on and on about how cute she is and how much they love her. The downside to all of that quality time we had with all of our girls in one place was that we had to say goodbye to our big girls again and send them back to Leland.

As for Harper’s health report… She is completely off of the cooling machine and is back up to a normal body temperature! We love seeing her with color and feeling her skin all toasty and warm, but going to those extreme body temperatures and back has been tough on her little body. Now that she is warm, she is far more sensitive to the pain she is in. She’s very uncomfortable and cries a lot, although we can only see her crying and not actually hear her due to the breathing tube. She is still slowly becoming less dependent on the ventilator, and they are still working to find a good balance with her blood pressure meds. She is currently having a blood transfusion to help with that.

Yesterday was a busy day so we weren’t able to update. “Mommy” was finally fever free long enough to be discharged… No explanation for the up and down temps as the only thing they could find were kidney stones and just a little bit of fluid in the lungs, so now it’s Duke time!

Harper has been fairly stable the past day and a half. They removed all the EEG equipment today and haven’t seen any more signs of seizure activity. She still has her breathing tube, but has almost been weaned from it. Today is her last day of being hooked up to the machine that holds her body temperature at 92-93 degrees. Her head circumference is maintaining its size, so that’s great news in terms of swelling. Her blood pressure is the least stable of everything at this point, so she’s being medicated and monitored closely for that. Right now she has her second neurosurgery tentatively scheduled for Thursday to try again. Oh, and on a happy note, both big sisters were able to come in and see her today!

Harper has been losing IVs all day, so they spent the entire afternoon attempting to insert some kind of special tube in her belly button. They finally had to stop, and are now working to do a femoral tube instead. In the process of this they believe they witnessed a seizure, so she has been given anti-seizure meds and will do an EEG next.