Harper’s improvement continues slowly and steadily. She is visiting with her big sisters this weekend, and loves all of their attention! We talked with one of her doctors this morning, and here’s her latest update: They are continuing to increase her milk feeds and will be taking her off of the TPN today to see how she does. They are weaning her slowly off the morphine, and when she comes off completely we will have a therapist come in to start working in bottle feeds. Her latest c/t scan was good- the right side of her brain/head is improving, and while the left side still shows some bleeding, it is stable and the neuros are happy with it. They are continuing to increase the pressure on her EVD (her external shunt), and in the next two or three days they’ll make a decision about removing it and also try to decide if she’ll need the internal shunt.

That about sums it up… On a non-medical note, we got to see her in a onesie yesterday! It was exciting for this mama to see her girl with clothes on for a change. 🙂

Another great day today… Everything is still nice and stable, meds are slowly decreasing, feeds have been restarted successfully through the feeding tube, and we had our first physical therapy session today (which also went well). Harper is becoming more and more alert and attentive, and today we discovered that she loves to hear music from the music box they placed in her bed. We’re thrilled to have nothing but good news!

There are no words to describe the incredible day we experienced today! Harper’s swelling is down, she was wide awake and alert, and she came off the ventilator today. To top it all off, we got to hold her today… It was mom’s first time holding her since she was flown out of Wilmington 16 days ago, and dad’s first time since her first surgery. She was so happy to be swaddled and held and vent-free… Even the nurse referred to her as a miracle baby. God has been so very faithful, and we are so grateful to Him and to all of you for praying so fervently on Harper’s behalf!

Harper had an amazing day after her surgery this morning… She was such a trooper with all they had to put her through. This afternoon they were able to remove the FEM line from her leg and the other arterial line from her wrist, so we were so happy to see her free from that! They’ve cut her ventilator back to the bare minimum, and are looking to remove the breathing tube tomorrow. She will also have a c/t scan to check on the new tube and an abdominal x-ray to check on her digestive system tomorrow. Lots of progress for one day, looking forward to more blessings tomorrow!

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…