Trip 6 to ACH - July 9th

Yes, I have been horrible at keeping this blog updated. I promise to post Trips 4 - Dec and 5-April soon. But for now, I wanted to share with you the GREAT news that we received from our latest trip to ACH.

Zoe traveled great again. She is so easy going when it comes to being stuck in a car for 9-10 hours. It just amazes me. We left on Thursday as usual, spent the night and was at the hospital the next morning at 9 for her surgery at 11:30 on Friday. The procedure was the same as usual they look at her airway and laser her face. Dr. B was very pleased with her progress. The propranolol has been wonderful for Zoe. Dr. B now considers Zoe's hemangioma to be in Stable condition, aka her hemangioma appears to be out of its growing phase and entering its involution phase. It should start fading and going away on its own now. With this determination, it is time to wean her from her medication. We started that process on Saturday after the surgery. Today, July 17th was her last day of propranolol. Yeah!!!!

Now we just monitor her breathing closely to make sure that there is no signs of the hemangioma trying to start the growing phase again. If she starts to show any problems, they will put her back on the propranolol again. Typically, the docs have starting the weaning phase at 12 months, but with Zoe they waited closer to 15 months. We go back to ACH in 3 months for an office visit ONLY... Yeah!! Yeah!! Yeah!! Hopefully, this will be the last of these surgeries for my Zoe. It is possible to need more surgeries in the future, but we will keep praying that this was her LAST.

Thanks to everyone for all their thoughts and prayers for Zoe and our family!! God is truely Awesome!!!

(I will post pictures soon.)

Phenomenal

'Phenomenal' was how Dr. Ray described Zoe's progress. Dr. Ray is Zoe's ENT at East TN Childrens Hospital here in Knoxville. Dr. Ray had not seen Zoe since just before our first trip to Arkansas. He said that it was like looking at a different child. He couldn't believe of how good it looked and that it wasn't causing her problems at this point in the hemangioma's growth phase.

The propranolol protocol is proving to work very well for Zoe and we hope that her progress will help other children to get the same treatment early in the growth phase. The side effects are much less than the typical treatment of steroids or vincristine chemotherapy.

See for yourself the improvements:

We thank God daily for the many blessings that he has given us.

Trip 2 to ACH - June 29th

Just 4 weeks later, we were heading back to Arkansas for our next visit to ACH. We were very anxious to find out how she is responding to the medication. During this visit, Zoe had the same procedure as last time, the MLB with possible laser treatment or steriod injection in her airway and a pulse dye laser treatment to her face. Once her regular procedure is done, she had an MRI/MRA of her head, neck and chest to check for PHACES syndrome. The MRI was normal and didn't show any signs of PHACES, another prayer answered.

Zoe is ready for her next road trip. We are very blessed that she is a good traveler. Sleeps most of the way, only to wakes up to eat and be changed.

Zoe entertains us and herself as we wait for her surgery. She is really starting to smile a lot.

Now it is time for a nap.

The wait was longer this time because she was having both the MLB and the MRI. The two teams had to coordinate their times in order to leave her under anethesia the least amount of time as possible.

Finally after waiting for 2 hours for the procedure, they take her back. It is the hardest thing to hand over your baby over to a stranger to take them back to surgery. They let us carry her up to the last minute then either one of them carries her or she lies on a big hospital bed. So sad, but very thankful that God has given them the desire and expertise to do such a wonderful and amazing job. Her procedure with Dr. Buckmiller only takes about 45 minutes. Dr. Buckmiller was very pleased and amazed herself at the improvements in Zoe's condition. The medication has made great improvements in her airway. At our previous visit, the pictures of her trachea showed that the H had grown around all 4 sides and was a very bright red color, now the color is down to a light pink. Also, her airway had gotten just a bit larger.

Zoe and Stuart just after her procedure.

All the dots on her face is from the laser treatment. The laser lightens the redness and helps prevent ulcers.

Trip 1 to ACH - June 1st

During our stay at East TN Children's, Zoe was seen by many great doctors and nurses. The ENT that done her procedure referred her to one of his partners that deals with hemangiomas, Dr. Ray. He educated us more on her condition and the different treatment options. He referred us to Dr. Lisa Buckmiller at Arkansas Children's Hospital (ACH) in Little Rock, AR. She specializes in treating hemangioma and other vascular anomalies. Dr. R had been a resident under Dr. BM in Arkansas and is new to our area.

Zoe is ready for her first road trip.

Within 2 weeks, we were in Little Rock with an appt to see Dr. BM. She seen Zoe in the clinic the first day and done surgery the next. The surgery consisted of a MLB (microlaryngoscopy and bronchoscopy) with possible laser treatment or steriod injection in her airway and a pulse dye laser treatment on the exteroir. Dr. BM found that the hemangioma had grown significantly in just the two weeks from her previous procedure. She started Zoe on a new treatment protocol of taking Propranolol to help control the growth of her hemangioma. Propranolol is a beta-blocker medication typically used for high blood pressure.

Zoe at ACH after her first pulse dye laser treatment.





Link to the Vascular Anomalies Center at ACH http://www.birthmarks.org/

Zoe's Hemangioma

Zoe was born on April 20th with what we thought was a bruise on her right side of her head including her ear. The docs said that is was due to the way she was lying on my pelvic bone. Other than that she was a perfectly healthy little girl. So well that we were able to come home just barely 24 hours after she was born. On Day 4, we went to her first visit to the pediatrician. The bruise was still there along with some redness on her right cheek and chin. Both areas looked as if they were a bit chapped with skin peeling off them. Doc told us to treat it with Aquaphor. Her jaundice level was high and weight was low, so we got to go back the next day for a weight check and another jaundice test.

On day 5, the redness wasn't any better, actually a little worse. At first glance, the doc thought she was a forceps baby, not the case. Then after a closer look, the doc concludes that this is a port wine stain or a hemangioma and starts to educate us on the next steps. Zoe will need a CT Scan first, then an MRI a bit later. They referred us to a dermatologist and a genetics doctor.

At 4 weeks old, Zoe started to show signs of breathing difficulty. I first called the doctor thinking she was congested. They advise me to use a humidifier and saline drops. A few days went by and her breathing was getting worse. I called for an appt to see the doc. He examined her and tested for RSV, which was negative. Then sends us straight to Children's Hospital for a CT Scan and a 23-hour admittance. Her pediatrician arranged for the ENT to be ready for our arrival to examine Zoe before her CT Scan. He examines her, she gets her scan then we settle in for the night. They start her on a high dose of steroids to try to help her breathing. The next day we learn that instead of a port wine stain, Zoe actually has a hemangioma. The hemangioma was not only on the exterior of her face, but also in her airway causing her breathing difficulties. The steroids started improving her condition pretty quick and kept her stable for the weekend before surgery. On Monday, Zoe is 5 weeks old. She had surgery to remove the hemangioma from her airway with a laser. She spent the night in PICU and recovered very well. After a couple more days in the hospital we got to come home on the 20th, at exactly 1 mth old.

Here are some pictures of Zoe's hemangioma at 2 weeks old.