Not Yet

So as soon as I pressed "publish post" and "log out" the home phone rang, it was CHLA saying they would not extubate on Friday. They will try on Saturday, today they said they would try tomorrow (Sunday). It's all about her, the breathing and the lung infection. I rather they wait and let the extubation be successful then have her re-intubated because she couldn't breath on her own. They have done several exercises for her but she gets tired. They decided she needs a break so the machine does the work until she can pick it back up. The drugs don't help but its really an art how they try to balance the medications and breathing with her needs to a happy medium.

I don't know if I ever told you but I keep in touch with Yolanda and her baby Graciela. I met them at the NICU in Orange. They are doing good, waiting on heart surgery. They goes to a group physical therapy for Graciela in Laguna Niguel from Long Beach. She is hoping when Amber gets out we can join them. Their doctor wants to wait until she is ready (has the need) to do surgery but Yolanda doesn't want to wait until Graciela has a respiratory problem or has to call 911.

While here at CHLA I ran into the mom that told me about the wonderful Dr Starnes. Laura, Mike and Mikey, they went home to Ladera Ranch the week Amber had her surgery. It was a happy day for them, they had been here since December 2008 when Mikey was born. They were home for about 16 hours when they took Mikey to his pediatrician. I ran into them this morning with the sad news that when they were home Mikey cried the whole time. The pediatrician said to take him to the ER at Mission that sent them to Orange CHOC that sent them back to CHLA. He was having liver problem, it had accumulated fluid outside of it and it pushed on the lung causing it to collapse. After they extracted the fluid the lung was able to go back to normal. They are only worried about the liver.... heart and lungs are doing great.

I also ran into another family I spoke to you about from the NICU in Orange; Lori, Jeff, Molly and Jake. Molly and Jake are twins, Jake is doing great and growing while Molly just had her first of three heart surgeries. They are here at CHLA waiting for Molly to recover from her surgery so she can go home. They were home for two months, then after Molly had heart cath to examine the heart before surgery, they realized she was ready and came here. She was operated by Dr Starnes also. Her white blood count has been a little high, so they think she might be getting an infection but so far she's been good. They've started to bottle feed her today, it was so cute to see little Jake in his big Papa's arms.

I thank you for your prayers, always, I know you wish you could do more but they are a blanket to me in these hard cold times. Your prayers, my family and God are the reason why I can crack a joke here and there, smile at something silly, cry during something sad and stop, and why I can look at others and say I will pray for you and ask my group of friends to pray for you, your families and your precious little babies. Please pray for our little angels that are battling each day, for the nurses to take care of them with love and compassion, for those people around us that help out like the Ronald McDonald house and their volunteers, for the doctors that watch over them every day and night. I thank you for your prayers, good energy, positive thoughts and love. I will keep you updated as soon as I know....