ROSE’S SURGERY DAY TODAY — UPDATE & REFLECTIONS:
It’s been a while since I’ve done an update post on Rose and her health and I know many of you have been wondering how she is doing. There are no words to express how much it means to us to know how many people love our baby, pray for her, and care about her and our family. I feel the spoken and unspoken support of thousands of people and if you are reading this, I feel you too and for that, I am grateful. Social media has been a wonderful way to share what is going on and the very unique connections that we have made because of it have been absolutely invaluable.
We’ve reconnected with old acquaintances and friends and deepened bonds with family and friends that choose to be there with us up close and personal through the not so fun times. I’ve connected online with other new moms who had a newborn diagnosed with biliary atresia and felt a level of empathy and understanding that only they can relate to. Raising your baby in a hospital and watching them escape death and be tortured on a regular basis is horrific to say the least.
We’ve also experienced the profound good will, belief, hope and generosity that exists in the human heart of people that we know and also people that we have never met. It’s truly restored my faith in humanity.
I never in my wildest imagination could have expected that sharing my pregnancy on social media and Rose’s birth would lead into her being diagnosed with a rare liver disease at 2 weeks old and her getting a life saving liver transplant at age 5 1/2 months in July 2022. I don’t know if Michael would agree, but in my opinion, this last year post transplant has been harder than all that preceded it, believe it or not. (I was also pregnant again and gave birth to a new baby so that definitely probably added to the advanced level of difficulty for me personally!) Rose has had so many setbacks, issues, near death experiences, been hospitalized for months and has required an exorbitant amount of daily medical care. It’s been exhausting on a level that only parents that have medically complex children can understand. There is nothing normal or easy about our lives. I could write a book detailing all that she (and we) have been through and the medical interventions that she has had to endure, but I’ll spare us all the nightmare.
Right now, as I sit here writing, my precious baby Rose is 19 months old and she is currently undergoing a 3 hour major open abdominal surgery at Vanderbilt Children’s Hospital.
There is nothing Michael and I can do or control except our own minds and how we choose to think and believe. We surrender to the reality of the circumstances and hope for the best.
I have many mixed and contradictory feelings. I feel confidence in the transplant surgeon that is performing the operation, Dr. Joseph Magliocca, along with the extensive care team of medical professionals that we literally entrust with our daughter’s life. I also feel nervous, fear and dread as we have seen too much in the last 19 months and are not naive to the problems that can and do occur. We know that accidents happen, mistakes can be made, bacteria can cause a deadly infection, surgery can have life threatening and serious complications and nothing is guaranteed.
I feel hopeful that this surgery could “solve” the problems that have been holding Rose back and have made her totally dependent on constant and elaborate daily medical interventions. We are so ready for some freedom from the medical burdens and limitations. On the flip side, I feel sadness and a little anger that she has to endure ANOTHER drastic surgery. Now that she is older, cognizant and mobile, we are dreading this recovery process as she is much more aware of what is going on, the pain, and she gets scared.
If you’ve been following our story for a while, you will remember that on Christmas Day (of all days) we had to drive back from Florida to Nashville and take Rose to the emergency room because she had blood in her stool, was vomiting, losing weight from poor feeding, had a high fever and was extremely lethargic. We didn’t leave the hospital for almost 3 months and spent her 1st birthday in the hospital as she was knocking on death’s door. It was heartbreaking, terrifying and we felt helpless.
Possibly from her donor’s liver, Rose had contracted EBV (Epstein Barr Virus). The doctors don’t know for sure, but they believe that the EBV caused severe and painful ulcers in her intestines, stomach and esophagus. This led Rose to not be able to swallow or tolerate feeds and she would vomit and it caused serious and frequent fevers to occur. They had to put her on TPN (IV nutrition) and she’s been on that for the last 9 months. TPN is VERY bad to be on long-term, but there hasn’t been much of a choice and it’s been life sustaining and saving. Since the ulcers have been healing, she’s been able to take about 12 oz of milk (4 oz. three times a day) through her feeding tube and eats a few bites of food, but any more than that and she gets backed up and vomits.
Endoscopies and CT scans have shown a stricture in the duodenum (the first section of the small intestines) and have led the doctors to believe that the ulcers that were there scarred and created an obstruction which prevents her from advancing feeds. She’s essentially stuck being on TPN and only getting 12oz of milk through her NG tube a day and surgical intervention is necessary.
The surgeon is not able to see via imaging where the scarring is exactly and he has to wait until she’s actually opened up on the table to decide which of the two surgeries will be needed. One option is called a resection (cutting out) of the stricture in the duodenum. The second is a gastrojejunostomy (where he’d take the second part of the small intestines called the jejunum, tack it onto the stomach to create a bypass of the structure which would allow food to pass through).
Surgery started about 2 hours ago and we have received word that all is going well so far and that Dr. Magliocca was deciding which one to do.
Prayers are appreciated for a smooth and uncomplicated recovery, rest and healing for baby Rose and for peace of mind, strength and encouragement for Michael and I. I’ll post an update for everyone later tonight. <3