Only 18 Hours Home

Hello my friends and family,

First, Happy Easter. I hope you had a great day surrounded by love ones (family and friends). We actually got to spend some time together with my brother and sister and their family. We even did an Easter Egg Hunt, we had somewhat of a normal day. Of course it was hard to see all the cousins running around without Amber being there... but soon enough I suppose.

It's been an overwhelming week. As you know Amber came home on Friday at 10pm. I was so happy to have her home my mom came to the hospital to help me get her home. She had her oxygen tank, Apnea monitor (for heart and respiratory monitoring) and all the other little things from the hospital. We got home at 1030pm, I woke her up at 11pm to feed her, she cried on and off from that time until the next day around 5pm. A follow up nurse had called and was coming to see that everything was going well. My best friend Maria came to help out too and as she held Amber and send me to rest the nurse came and noticed Amber was not well. After she listened to her heart she decided that I should call the Dr to see what he wanted me to do, next thing I know she is calling 911. Fire, paramedics and ambulance all came within a minute (that's what it seem like to me) as if they were all outside the door waiting for the call. The Apnea monitor never worked, the light for service was on after an hour of being on and in use, it was useless. I have such wonderful neighbors who came to check on me, help and just be a shoulder to cry on, Michelle and Zach my shoulders (Thank you), Molly who took over and told the paramedics what Amber needed, her history, and offered her knowledge as a NICU nurse to give Amber the best assistance at home and in the Ambulance (Thank you), her husband Jeff, who brought me dinner and Amber's eye drops to the hospital (Thank you) and Robbie who had no idea I had people and texted me "I will meet you at the hospital so that you are not alone" I will never forget those words (Thank you). Kurt, Kyana and Taylor were in Seattle for my sister in law's wedding so Maria and Molly had the hard task of calling him while I was dealing with doctors and Amber. Charlie who took me to lunch the next day while I was at the hospital (Thank you) and again Robbie for making that yummy Baked Ziti for us to have for dinner once everyone was home (Thank you). And of course Maria for being there trying to give a break instead was also another shoulder and in advance thank you for watching the girls on Wednesday :-) (Thank you, Thank you)

At least now she was closer to home at Mission CHOC until today, she was transported back to CHLA for her left eye surgery and follow up on the right eye. Again via helicopter (which I found out it was more cost effective for CHLA, plus the company is exclusive for CHLA and although we tried to request ambulance she did not go that way) back to CHLA. Her left eye surgery is scheduled for Monday morning. Please pray that all goes well, for Dr Song to have steady hands, the nurses to keep Amber happy/comfortable and for us to continue this up hill journey. While in CHLA we are also going to get a second opinion on Amber's heart and the timeline for her surgery. The surgeon in Orange CHOC want to wait until she is 6 to 9 months 10 to 12 pounds but it's possible that a surgeon in LA might want to do it sooner because of her respiratory episodes, she had two more while at Mission. Please pray that they can figure out what's best for Amber now because she is not gaining the weight they need her to be by now.

Pray for my girls to have understanding and patience, Taylor is acting out more than usual and Kyana was not happy that I was going back to CHLA for a few nights. Kurt and I feel that everything is starting to take a toll on them. It's been 8 weeks going on 9 since Amber was born and they haven't seen her for longer than one hour at a time. Pray for my mom who had been here every week, every step and is getting sick (cold/flu something) that she may rest and feel better even thought she has to be here for the girls Mondays and Tuesdays.

Mrs Elkin, Charlie please keep an extra eye on her tomorrow (Monday) she was really really sad I was leaving today.

Thank you again for your prayers, visits, calls, texts, gifts, Easter baskets for the girls (by the way don't try to buy eggs for egg hunt the day before Easter, they don't have any), for your support and understanding (I no longer make future plans I live by the day depending on where Amber is). My God bless you and he has blessed me with you, your friendship and my family.

Love, Jessie