2nd e-mail sent September 12th:
Dear family and friends:
Laura and I have been run ragged with meeting with Dr.'s, the constant phone calls, the updates, the treatments, prognosis, etc., for Whitney. You have ALL helped out greatly with advice, assistance, support, watching Anne, etc. We do appreciate it very much. Honestly, thank you for EVERYTHING so far.
Upon meeting with BOTH pediatric cardiologists yesterday, Dr. Sanjay Parikh of St. Vincent 's Children's heart center, and Dr. Anne Farrell of Riley, We BOTH feel that the best course of action for US (Laura, Me, Whitney and Anne), in terms of 'pediatric cardiology care' for Whitney, is for her to go to Dr. Parikh. Our pediatrician, Dr. Kristen Gollnick thinks we can't go wrong either way on Drs. But, after discussing treatments, plans, surgeries, etc., and talking with both doctors, our initial gut reactions were to go with Dr. Parikh and his plan for the pediatric cardiology care, BUT to go with Dr. John Brown at Riley Hospital as the pediatric heart surgeon. I actually went to Kindergarten through North Central with Dr. Brown's son, Jason. We were in the same class growing up all through school. I know Jason and his family. It is a small world.
There are only 3 pediatric heart surgeons in Indianapolis , one at St. Vincent 's and 2 at Riley. Dr. Parikh was very adamant that we should go wherever we want to go to do the surgery, whether it was at Riley, St. Vincent 's, or even the Mayo or Cleveland Clinic, and he would send us wherever we feel most comfortable and wherever we wanted to go IN THE COUNTRY. He stressed that Riley is wonderful and that Dr. John Brown's specialty is "Pediatric A-V Canal Defect surgeries." Dr. Parikh said that for A-V canal surgery, he would go to Dr. Brown at Riley. My friend, Beth Admire, whose son has down syndrome and had the same surgery a few years ago went to Dr. Brown for the surgery and she said that he and Riley were fantastic. She also said her son was 6 months old and weighed just 9 pounds the day of the surgery.
As for Whitney's plan, Dr. Parikh stressed that we feed Whitney through the NG tube that goes through her nose and into her stomach for the next week to 2 weeks, that we supplement the breast milk with 1 tsp of formula on each feed, but that we also continue to simultaneously try and breast feed her, stimulate her mouth, use a pacifier, etc. (for the record, Dr. Farrel and our pediatrician said the same thing about feeding her). The NG tube is really a quick fix. It is not meant to be a long term plan. Dr. Parikh said that ultimately, we may have to have a G tube attached to her stomach via a surgery. Whitney would ultimately need 1 or 2 days in the hospital to recover from the surgery to place the G tube in her stomach. He said that it is easiest on everyone, including Whitney if this is what is done, this is assuming that Whitney's feedings are still an issue (i.e. she continues to fall asleep and not feed well from a bottle or the breast). With the NG tube she has acid reflux, she wretches, and you can tell she is VERY uncomfortable.
The goal is to get Whitney bigger and stronger for the surgery, but not wait too long to do the surgery. Just today she passed the 7 lb. mark again. YEAH! It is not uncommon with her condition for her to be weak, sickly, not eat much, sleep a lot, etc., UNTIL the surgery. But, there is a point in which Whitney, because of her condition, may simply tread water, and not put on weight or grow at all. An increase of caloric intake may overload her system, and lead to a variety of complications. You can't jut up her caloric intake, feed her more and more and expect her to simply grow big and strong. It won't work that way. Dr. Parikh said he would recommend doing the surgery at 3-5 months, most likely 4 months, assuming she gets bigger and stronger, which the G tube should help, if it comes to that.
Basically, Whitney is in bad shape because of her heart, and the sooner she gets bigger and stronger to have the surgery, the better. But, she will probably not grow much at all from 4 months on as opposed to 6 months. Having the surgery earlier than 6 months outweighs the option to wait for her to get bigger (which she most likely won't get much bigger at all and she will simply prolong her weakened heart condition, and we will be taking somewhat of a risk with her weak immune system, she may get sick, get a virus, pneumonia, etc.) and the longer we wait, the more likely we are to risk PERMANENT heart, lung and hypertension issues. Dr. Parikh stated that there are some recent studies that show a child can get into permanent problems if the surgery is not done before 6 months. Rather than prolong Whitney's condition and wait for her to get bigger (which she may not), we want to go with the surgery at 4 months instead of 6 months. Her breathing is very labored, she is very weak, she is susceptible to getting very sick, and it is scary, and her condition will not improve until the surgery.
Dr. Parikh assured us that "Dr. Brown is so good at the AV canal surgery, she could have it today and probably be just fine, but, let's see if she can get bigger and stronger first."
Thank you again for all of your support, guidance and help. We love you all.Mike, Laura, Anne and Whitney