Bath Time

It continues to amaze me who much I miss the normal things about having a newborn such as the cuddling, nursing, diapers changes, dressing, and baths. On Saturday night we got another precious moment with Lilly. I got to give Lilly a bath. I was nervous with all her medical lines and trach starring at me but I quickly got the hang of it. I love washing her hair and rubbing my hand through her dark hair.
Many people already know that we rushed Bryson (our two year old) to St. Joseph’s hospital Wednesday evening. Bryson had been running a fever, vomiting, and lethargic for over a week. We consulted with the pediatrician who took a blood test. The blood test numbers came back very high saying Bryson had an infection somewhere. The pediatrician was very concerned and told us to take him to the hospital for further testing. Once in the emergency room at St. Joseph’s hospital they recommended that we do a spinal tap. It was so hard to stand by and watch another one of our children suffer from medical issues. The test came back negative thank heavens. While we were in the emergency room Lilly was upstairs causing her own set of problems. By late Wednesday evening both children were doing better. Bryson was released to come home and Lilly finally went to sleep.
We got the results of the neurology MRI on Thursday morning. The doctor said that because of the cyst on the back of Lilly’s brain in pregnancy it caused her cerebellum to not develop all the way. Her cerebellum is underdeveloped and smooth. He said her prognosis for the future is she will never walk, sit up, and fine motor skills such as eye contact will not be possible. He feels this is why she has no control over her eyes now. He said she will be mentally challenged. I was devastated. I walked back to her room numb and stood at her bed side and sobbed. After a good temper tantrum I remembered he doesn’t know my Lilly. For heaven’s sake she yanks her own chest tube. He doesn’t know how she was given a 5% chance to make it to a live birth. He doesn’t know our Lilly and her strength and courage to overcome all that she has so far.
We are continuing to rely on Heavenly Father for the strength and courage to face the trial. We are so grateful for this opportunity to grow closer to him and our family and friends. Thank you for all the prayers and support.