Well, once again, it has been awhile since I have updated the blog. I could blame a busy couple of months, the holiday season, or maybe just maybe I forgot…I’ll let you guess. The last couple of months have been filled with many wonderful memories/moments and a month long hospital stay. The later was quite an event.
Emma entered the hospital at the end of November with a UTI that caused her to run a very high fever. This landed us in the hospital for IV antibiotics and observation for hydration issues. Unfortunately, she became very dehydrated due to her high fever, so we had to hold her diuretics which aid in keeping fluid off of her lungs and abdomen. She did not tolerate the diuretic hold well and needed extra respiratory support as well as a closer eye on her kidney numbers, so we were transferred to the Cardiac ICU. She remained in the cardiac ICU for a few eventful weeks. We increased her heart failure meds to try to help her kidney function and increasing abdominal girth; however, her belly kept getting bigger and her kidney numbers were worsening significantly. Scott and I were beginning to get frustrated. No one had answers and Emma was getting worse by the day. Her belly got so big that she was having trouble breathing. We ran countless tests and kept hitting a wall. It always hurts my mom heart when Emma is hurting and no one can find answers. Scott and I truly felt we were dealing with fluid in her abdomen even though the tests were not showing it. Our suspicions were finally confirmed….almost 2 pounds later. We had a drain inserted into her abdomen and drained almost 2 liters of fluid. The fluid in her abdomen was fatty in nature, so we have switched her to a fat free formula. Draining the fluid in combination with the formula seemed to do the trick. So after four weeks we were discharged home.
Now for the fun news….
We were able to make it home in time for Christmas which was a wonderful surprise. We actually made it home the day before I graduated from UNT with my PhD. We got settled in and tried to regain some sort of normalcy after a month in the hospital. Emma came home on her increased heart failure medication and a new formula, but otherwise was on a pretty similar routine.
We began our holiday celebrations by having “Friendsmas” with the Lawry family. This is a tradition we look forward to each year. Lots of laughs were shared, good food was consumed, and card games were played. We were able to celebrate Christmas at home with just the three of us…oh and Max. We had a nice relaxing day together and Emma was very excited about her gift….a musical fan. Scott and I took turns attending worship Sunday morning and opened gifts Sunday afternoon with Emma. We took Emma to see Christmas lights that evening (not her favorite activity) and ended the evening singing and dancing to Emma’s new musical fan. We traveled to Oklahoma on Monday for Christmas with the Estes family. It was a quick but fun visit. Emma enjoyed the time with her aunt, uncles, cousins, and Gramma and Grampa.
After all of the holiday excitement, we have tried to get back into some sort of schedule. Emma has started back all of her therapies and school. We go to the cardiologist once a week for PICC line care and labs.
We are enjoying having a happy girl back in the house. She is back to working hard in her therapies and learning more every day. She got a new sanding frame and SMOs to help her strengthen her legs and have more ability crawl around and attempt to stand. One of her new goals is to communicate more effectively with her communication device, so we are using that daily to get her to tell us her needs and wants. Most of the requests include: I want IPAD, I want French fries, and I want music.
Thank you all again for the prayers, support, and encouragement. We have been greatly blessed by all of the people who send cards, food, take care of our dog, etc. to make sure we have little worries outside of caring for our daughter when she is hospitalized. We could never thank you enough.
Remember, February is right around the corner which means CHD Awareness Week activities. J Get ready to wear red.
God is good! All the Time! God is good!
