A non-Miriam update:
Please pray for our friends who have just found out that their 7 month old (youngest of 5) has a tumor on his spine. Baby Thomas and his family need prayers and positive thoughts!
We’ll probably be at Dell Children’s Medical Center at the same time.
Busy day today! Before our hospital tour Miriam had an appointment with her orthopedic surgeon, Dr Williams of Central Texas Pediatric Orthopedics. So now we can introduce him as well:
We feel very prepared for this thanks to all of the education and support they have given us, and we left today with no real outstanding questions.
Miriam also had x-rays done to help prepare the surgeons and their teams. Her last set was about 6 months ago. She has grown, but nothing new or unexpected in this set of images. And she only cried a little bit when we got to the room and was very brave after that.
Here is a copy of the x-ray to give you an idea of what’s going on in there. Note that she is standing up more or less “straight” here. Her right lung is smaller than her left (this image is as though looking at her back, so left is on the left). The large white mass in the center is her heart, right where the “jumbled” portion of her spine is located. It jogs over to the left considerably there as well. You can see the fused ribs on the right side in the middle (it looks like it starts as two, fuses to one, and then comes out as three?) and gaps at the lower ribs.
But if you watched the videos on the procedure, you know she is nowhere near the worst case for this type of procedure.
Here is our big girl in the surgery waiting room at Dell Children’s waiting for her pre-op tour of the PANDA unit where they prepare for procedures.
After a quick lunch in the hospital cafeteria between her appointments, we went down to the surgery waiting. There we met a very nice Child Life Specialist for the tour. Child Life Services is responsible for the overall well-being of the patients, reducing stress and anxiety, and training and education beyond the scope of the nurses. They are most visible throughout the hospital through all of the toys!
Miriam did very well talking about her procedure. She was a little nervous at first, but warmed up (especially after seeing the toys and hearing about the popsicles.
We walked through the steps for the morning of the procedure, starting with where we will wait with her while everything is ready. Then we walked back to the stop sign where the doctors will take over and we will giver her hugs and kisses. (Grandparents are allowed up to this point too!)
The we were shown a procedure room. There were a lot of equipment and lights and machines and hoses in there. And the bed, which Miriam said made here “a little confused.” She was apprehensive about the anesthesia mask the Child Life Specialist gave her to try out:
But then Cecilia tried hers out and Miriam did too. Her only job for the surgery is to take deep breaths in the mask, and she got in some good practice.
The next stop was the “wake-up room” where she will recover after the procedure. (The toy cars were probably more exciting, though.) She will wake up slowly and naturally, and then the doctors will call her parents back as soon as she is up. She will also get juice or a popsicle at this time. When asked which she would prefer, she said, “both.” They thought she needed to practice that part, so she and Cecilia both got a “practice popsicle.”
After the tour we visited the chapel and prayed for Miriam and her doctors.
When she got home, Miriam told us about everything that happened and explained the whole process. She has been acting it out with her dolls this evening, using the mask to help “Miriam” go to sleep. So we know she learned a lot and is working through it. She will be much more comfortable when we go next week for her pre-op labs and the following Monday for the surgery. We are very grateful for the time the staff took to talk to her and take such good care of her.
(And here are some bonus pictures of the chapel, because daddy.)
Miriam and her family will take a pre-op tour of the Dell Children’s Medical Center.
Want to go along? You can take a virtual tour to read about the process and see pictures of the facility.
Miriam had her 4 year old well check today (and Hildi had her 9 month appointment too). Both are very healthy, and Miriam is in good shape for her procedure.
Here is a photo of all three girls with their pediatrician, Dr Sheila Boes of Pediatric Associates of Austin. She has been taking care of Miso from almost the beginning.
The best news is that Miso’s BMI is 75-85%ile for her age, which is a good indicator of her eating habits and nutrition (one of the early concerns with thoracic insufficiency). Appetite is one of the first things to go when lung function is impaired, which also makes the procedure harder on the body. Eating well and being this healthy also means she will be able to recover from the surgery better.
After the appointments, Miriam and Cecilia got to have gelato and Central Market! Ice cream is a special reward for big girls who do a particular something good in a particular plumbing apparatus instead of clothing [wink] and both they both did that yesterday!
Happy girls!
Hello friends –
Our daughter Miriam will be undergoing major surgery January 28 to separate her congenitally fused ribs and begin treatment for her scoliosis. As you probably already know, she was diagnosed in utero with hydrocephalus and possibly holoprosencephaly, but she was born with only enlarged (but functioning) ventricles and missing a few centerline brain structures. You can read more about her miraculously healthy birth on Be Not Afraid.
After she was born, we learned that she has a condition called Thoracic Insufficiency Syndrome wherein the malformations of her chest wall have prevented her lungs from growing. Her lungs have actually decreased in size since she was about 2 years old. She is thankfully in excellent health for the time being, but this condition could at any time start to impair her breathing and likely shorten her life. Her doctors will be inserting two VEPTR (Vertical Expandable Prosthetic Titanium Rib) devices which will slowly push her ribs apart and allow her spine to continue to grow, hopefully correcting the scoliosis without requiring fusion in adolescence. The Children’s Hospital of Philadelphia has an excellent series of videos on youtube explaining the procedure if you would like to learn more about it.
After the surgery on January 28, she will spend 5 – 7 days at Dell Children’s Hospital here in Austin and then recover at home. Barring any complications, her doctor says she should return to a near-normal routine in two weeks or so, and be fully recovered in six. She will need smaller follow-up surgeries every six months until she stops growing in order to expand the device to keep it on pace with her bodily development.
We are writing because many people have asked what they can do to help our family through this time. First of all, we would love if you could send cards and words of encouragement and prayer to Miriam. She loves to receive mail and it would be a joy to bring her a pile of cards to open in the hospital. Her fourth birthday is January 11, so belated birthday cards would also be a happy surprise. If possible, please include a picture of yourself and your family so she can see who is thinking of her. We would like to make a scrapbook for her to take on future hospital visits to remind her of all the people who love her.
If you need our address, please send us a private message or email.
We are very blessed that Jason has a secure job with good health insurance. Our out-of-pocket expenses are capped each year, and we know that eventually we will pay off our bills for Miriam’s procedures. However, we know some of you might like to contribute toward these costs, as well as the costs of meals, transportation, babysitting, and the like. If so, please visit http://www.youcaring.com/medical-fundraiser/Miso-s-VEPTR/38121 to make a donation and feel free to share this link.
Finally, and most importantly, we ask you to pray for Miriam on January 28 and the days following. She will be in good hands, but even in the best situations complications can arise. We ask to you to pray for protection from accident, infection, and emotional scarring. We pray that we are doing the right thing for her in the long run, and that this procedure will give her many years of healthy growth and life that she might otherwise lose.
Thank you so much for caring for our family. We are blessed to have all of you in our lives. We will keep you updated with Miriam’s progress. God bless you.
Jason & Becky Haskins
on the Feast of the Holy Family 2012
