First 4 Hours

She is doing well, normal baby stuff... We'll see what the night brings.

They Say Today is the Day

Amber is still doing great, Mission CHOC is doing a carseat readiness test and if all goes as planned she will be sleeping in her own bed tonight. Thank you for all your prayers, good thoughts, gifts, friendship, emails, texts, etc... hope you continue to pray for Amber as we continue to find out how she will develop and heal. We have a saying in Spanish when someone does something so great for you that there is no way it can be repaid. Que Dios te lo page... may God repay you. I think is the same as doing good deeds and having good karma, it all goes back to you. Every wonderful thing you have done for us will come back to you, I am humbled by your love and so thankful.

Like I said before, Amber does not have her vaccines and won't for a while. Robbie had a window viewing idea for those who want to see her and visit. I want to put her in a bubble but that's what moms do, we get crazy in the ideas of protecting our kids. I know most of you want to install a lowjack on your kids to know where they are at all times, so you know what I mean :-)

Here is a picture of my beautiful girl from yesterday (The picture of 6/22/09 is Amber and Alaina - my sister in law/Kurt's sister/soon to be Amber's godmother)

She's Coming Home

It has been a long journey, we've laughed, we've cried, we've prayed and we've seen those prayers answered. Although the journey is not over this chapter soon will be... Amber is coming home. They said Wednesday or Thursday but I think it's Thursday or Friday. Because of everything she was going through she did not have a chance to get her vaccines and now she must wait two months from surgery to get any of them. This means she will be playing catch up at six months with her first vaccines... which also means she is not well protected to be out in the world so we will not be doing too much.

Please continue to pray for Amber and the chapters to come.

For Graciella who still has a fever without any explanation and is awaiting heart surgery.

I will update with new pictures soon... sweet dreams.

New Swallow Study

Today Amber will be doing a new swallow study to see if they can start to feed her by mouth. She is doing so good and looking good too. The goal and hope is to send her home this week. We continue to be grateful for your prayers and good thoughts, it's amazing how the Lord has worked to bring Amber home. Neurology will follow up with her in 12 weeks after being home more details soon but right now running to shower and head out to the hospital.

Please pray for Graciela who is scheduled for heart surgery on Wednesday. Yolanda just emailed to say Graciela has had a fever the last few days and they don't know what's causing it. I am afraid her much need surgery will not happen if she is sick without a reason.

Also for Milagros who should have gotten extubated last week. I am have not heard from Ellen her mom so I hope all went well.

And of course for my Amber to be home this week :-) and continue to be well and strong.

Not Over Night But In Time Prayers Are Answered

She Is Doing Great

Just a quick update on how my girl is doing. It's been four days since they took the oxygen away and she is still doing great on her own. The plan is to send her to Mission CHOC to finish her recovery and then home. They will transfer at some point on Monday. They have to step down on the morphine and other medications find a balance for what she will need for home, adjust her breastmilk dose, make follow up appointments and send her home.

I just realized I will have all 3 girls at home in about a week... oh oh

Everyday I thank the Lord for Amber and her success, what a wonderful gift :-)

Please continue to pray for the kids and families:

Milagros (Miracle) she is Ellen's daughter from the previous post. She did not have the emergency surgery after all, she is holding on and they are hoping to wait as long as they can until she is bigger. I am told her surgery would be really hard on her fragile little body.
Molly - 1 of 3 heart surgeries done should be going home from CHLA soon
Graciela - heart surgery pending still at home with family
Joy - current status unknown but needed heart surgery while at CHOC
Raymond - little boy doing chemo therapy
Mickey - 1 of 3 surgeries done, problem with liver not a candidate for transplant due to heart condition. Enzymes should be 60 when he came in they were 9,000
Josefina - 1 year little girl accidently kicked by guys playing football at the park, hit head lost brain fluid, was in a coma for a week, learning how to walk again not sure the extent of damage.
Amber - Neurology consult still pending... our next journey.

I will post pictures once I am home on Monday, she is looking so good. It's hard to see what's normal... she cries a little every now and then, she looks around and wiggles a lot, then falls asleep for an hour or so, and it starts all over again. She has very little agitations that we know of right now doesn't seem gassy either. We will see.

Thank you

It's A Wonderful Day

Amber is doing so good... thank you Lord for her health and strength. She is no longer getting oxygen assistance, she is breathing regular room air. No tubes in, around or near her nose :-)

I am home today but I can't wait to see her tomorrow and hold her again. The current plan is to transfer her to Mission CHOC late Friday or some time on Saturday.

Please continue to pray for her and for the following little babies:

Molly - 1 of 3 heart surgeries done should be going home from CHLA soon

Graciela - heart surgery pending still at home with family

Joy - current status unknown but needed heart surgery while at CHOC

Raymond - little boy doing chemo therapy

Mickey - 1 of 3 surgeries done, problem with liver not a candidate for transplant due to heart condition. Enzymes should be 60 when he came in they were 9,000

Josefina - 1 year little girl accidently kicked by guys playing football at the park, hit head lost brain fluid, was in a coma for a week, learning how to walk again not sure the extent of damage.

Ellen's little girl - 2 of 3 heart surgeries found new problem and went to emergency surgery yesterday when I left.

Your prayers are powerful and heard, my Amber is proof of that... thank you.

28 Hours

June 9, 2009
8am - In LA, PICU team said Amber would be extubated for sure today
1030am - Amber is extubated, things seem well, she has Hi-flow nasal canula
12pm - Amber is doing well, I left to go home to take girls to Dentist @3pm
1pm - Called on my way home to check on Amber, she is struggling but they want her to work it out so they will give her time.
3pm - At dentist Kyana: no cavaties all good. Taylor: no cavaties, broke two teeth one on each side when she fell and got stitches 3 weeks ago, need to pull both teeth ASAP there is an infection building.
4pm - Called to check up on Amber still waiting to see how she does but not fully stable.
6pm - Took family to watch my nephew in his kindergarten play in Long Beach
8pm - Headed back out to LA to see Amber with Kurt and my father in law Dave.
10pm - Kurt says Amber is still the same, hoping she has a good night

June 10, 2009
6am - Kurt visits Amber before work, she is still struggling still has Hi-flow NC
8am - Spoke to Kim Verhoef gave her update, she said she would pray and ask bible study group to pray with the new update.
830am - Dave and I visit Amber, although she is uneasy, her numbers are ok.
10am - they switched Hi-flow NC to regular NC (Nasal Canula; the clear plastic tubing that goes around her head and sits on her nose to give oxygen.)
1130am - not thinking to re-intubate, she is doing good but they need her to be better, her carbon dioxide is still high, ph good.
12pm - they will check her g-tube and try to start feeds again at some point today.

It Actually Happened

Well little A (what Kyana calls her) is off the ventilator. She is still a little wrestless and her blood gas is not perfect. (Blood Gas would be her oxygen, ph balance, carbon dioxide, bi carb, etc) They are hoping with time and rest she can even herself out. She is not releasing enough carbon dioxide. Thank you for all your prayers keep thinking of her well and happy and stable more after the girls dentist appointment :-)

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....

Maybe Today

I saw Amber yesterday (Thursday) she was all covered up. The nurse said it was cold at the place her MRI was so they were trying to keep her warm with this thing. It's a tube that looks like your dryer vent, it's attached to two plastic like tube bags that go around Amber. The first tube sends warm air into the other two tubes. Then they put blankets over her to keep her whole body warm. It was weird to walk in on a bed with blankets. I told them to leave her mouth and nose open to fresh air, they said ok but that she was breathing through breathing tube so it was not a problem to have the blankets over her... I thought it was a problem.

Today, they said she has been breathing on her own with only pressure support from ventilator. They stop feeding her this morning with plans to extubate later on today. I pray the Lord can keep her strong and that this extubation is a success.

When you pray for Amber today and every time please see her without all her wires and at home well. It's hard to think of her without everything so I've added these pictures from home and hospital when she was with the least amount of wires. Thank you so much...

Another Day

Another day is almost gone, Amber is still at CHLA and still intubated. She is on so many medications... First thank you Lord for today, thank you that Amber is not getting worst, thank you for watching over her and our family. Second, thank you all for your prayers, messages, good thoughts and positive energy. Thirdly, lets talk about Amber... she is stable with all her medications. They feel part of her failure to stay extubated was her electrolytes which were low. They are giving her potassium, sodium chloride and arginine chloride to increase her electrolytes to prepare her for extubation in the next day or two. They will take and test another culture from the lungs to see what is going on with the infection. Neurology will do a MRI sometime this week, waiting on that too. Dr. Song should see her to follow up with the cataracts surgery, both eyes have been done. We never got a chance to take her back for her month follow up now she's there.

I drove down to LA on Monday night spent Tuesday and part of Wednesday with Amber... and of course with my husband :-) Kurt and I celebrated our 7 year anniversary on Tuesday... I know, I know you don't need to tell me about the math.