It’s a very quiet day here in Baby Lilly’s room. Even the hall ways in the unit are unusually quiet. No alarms, no hustle and bustle of staff members, and no crying babies. A sense of calmness is in the air. Lilly is sleeping peacefully in her crib. Lilly has struggled again this week. On Sunday evening we received word that Lilly has spiked a fever. The fever came and went for three days. Lilly had an infection in her trach area according to the swipe and blood tests they performed when she spiked a fever Sunday evening. She was started on antibiotics to help her fight this infection. Lilly’s blood count has been extremely low so we have spent the week trying to figure this mystery out. They called in a “blood” specialist to help them locate the problem. They are nervous that Lilly may be internally bleeding somewhere. They have scanned almost every inch of her body trying to locate a bleed but have not been able to find anything. Lilly gave us a very big scare on Thursday. While PT and OT and I were working with her on holding she got very upset and dropped her heart and oxygen levels to a very dangerous level. The room quickly filled with staff members as she was taken from my arms put back into bed. They immediately began to bag her trying to get her to oxygen levels up. This was not as ugly as the code blue incident but it was close enough. I stood back and trembled as I watched our baby fight to breathe. Once again I was completely helpless. When Lilly gets upset her lungs clamp down and she has hard time getting oxygen into her lungs. They refer to this as a bronchial spasm. It takes medicine and breathing treatments in order to get Lilly’s lungs to open back up. Lilly spent the rest of the afternoon on Thursday trying to recover from her “spell”. On a more positive note Lilly has started “feeds” again on Friday evening. We are at 3cc every hour. Lilly’s color looks wonderful and she is snoring (air leak from her trach) softly. Lilly is putting her hands up by her mouth and she grabs at her trach lines. Although this is not a good idea for her to grab we are excited because it shows some fine motor movement. After being told she would not have fine motor skills last week I am excited to see even the slightest thing. I did the happy dance when I saw her do it for the first time.

Lilly will be going for her heart catherization on Monday morning at 10am. We are hoping this will tell us what our next step will be and what we can do to help her poor heart. Josh and I both very nervous for this procedure because Lilly is extremely fragile and we hate seeing her have these procedures.

As we continue to be here in the cardiac unit we have met some amazing families. We have had the opportunity to bond with some of these families. We visit each other in the hospital rooms. We laugh, cry, and support each other. I am so thankful to have met these amazing families. To hear their stories and the trials they have overcomed are just incredible. I know heavenly father has brought them into my life to help me learn from their personal experiences.

We continue to feel Heavenly Father’s loving arms around us as we continue down this bumpy road. I have felt his loving arms around me when I have been alone at the hospital with Lilly. We are so grateful for the meals, phones calls, and continued prayers. We understand that Lilly has a very special mission here on earth. We love the sweet tender moments we get with her. I love when she grabs my finger or snuggles into my arms when I get to hold her. Please continue to pray that Lilly will begin to heal and overcome these challenges. Thank you for everything.