Wednesday, November 2 ~ Sophia had a swallow study and upper GI test performed at Blank to see if there were any problems with how she was ingesting and moving food through her body. There were several people involved during these tests: a radiologist, a feeding therapist, and a speech and language pathologist along with several nurses. We were relieved to learn that both the swallow study and upper GI were normal. What a blessing! With that said, we continue to be utterly confused as to why she continues to vomit, gag, and refuse fluids. She is also beginning to refuse some solids which is very disappointing as that used to be something that was in her favor. The team offered many ideas of things to try... many of which we are already doing. Still, they were very helpful and we were very impressed with the speech-language therapist we worked with. On to the next tests...Thursday, November 3 ~ Early Thursday morning, Sophia was admitted to Blank for an endoscopy and PH probe study. Once again, she was a trooper. Even though she had not eaten since 11pm the night before and was woken up early, she still managed to be her smiling, charming self. The photo above was taken before she went in for the endoscopy in which she had to be put under anesthesia. During the endoscopy, the doctor examined the tissue in her esophagus, stomach, and small bowel. He also took biopsies from each of these areas so that any inflamation or damage to the tissue could be discovered and studied. Along with the anesthesia, she had to have an IV, and they then put the nasogastric (ng) tube in for the PH study. The PH study basically measures the number of times that acid comes up into the esophagus. The ng tube was in for the next 25 hours and she did great with it... much better than we had anticipated. We will not know the results from the endoscopy and the PH study until Monday. After the procedure was completed on Thursday morning, we met with Dr. Manini. Per his observations during the endoscopy, Sophia's tissue in her esophagus, stomach and small bowel all looks normal. We were so grateful for this news!! He said that this rules out the possibility of the disease EE with 80% certainty. However, he said that the biopsies will reveal much more. It likely could still be reflux or possibly food allergies. After talking with him on Monday, we will make an appointment to consult with Dr. Manini again. He and one of his colleagues (Dr. Beltroy) who also saw Sophia in the hospital, talked with us at length about the possibility of needing to intervene if her fluid intake did not increase substantially in the very near future. While we will do anything for our baby and her health, Jason and I are beside ourselves thinking that she may have to have a surgery to place a g-tube (gastrostomy) in her stomach. We actually shared a room with another little girl (19 months old) that had just had a g-tube put in. Visiting with the family and witnessing the pain that this poor little babe was going through was more than enough to have us utterly terrified. We are praying with all our might that things with Sophia will turn around and she will be able to take in enough fluids and nutrients to stay hydrated and to continue gaining weight. All of this also impacts her in therapy which has us stressed as well. To date, she has made great gains in her motor skills (small to many, but GREAT to us)! We, along with her therapists, have obvious concerns about her continuance to gain skills if she is not taking in (and keeping in) the nutrients she needs to have energy to expend. Needless to say, the next month will reveal a lot for our little Soph... we just pray that some answers will come and the right choices will be made. As always, we want the very best for her.
Below are a few more photos from her hospital stay... we hope to not be back anytime soon!
Sophia getting ready to eat... checking out her new musical book and toys that Isabelle and Grandma brought her :)
Our sweet little girl was a very tired little girl. Here she is all snug with some lovies from home.
By evening Sophia had decided that it would be fun to play with the monitor she was hooked up to. For the most part, she did really well with the ng tube, not pulling at it much. The nurses did a great job of taping it across her face and back behind her ear so that it was not directly in her view. Thankfully, she left her IV alone too!
Isabelle loved crawling in with Soph in her hospital crib. Sophia lit up when her sister was there playing with her! We are so lucky to have such wonderful and loving little girls. Praise God for this gift :)I will post again once we learn results from the tests and we meet with Dr. Manini to make a plan for our sweet baby girl. Thank you for taking the time to read about Sophia and her journey and for taking the time to care. I know that I can sometimes be a bit excessive in my writing! Finally, as always, thank you for your kindness and prayers.
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