Children's Hospital of Los Angeles - CHLA

On Saturday morning Mission CHOC called to say Amber did not have a good night. They had been on the phone with Orange CHOC and CHLA trying to set up a transfer all morning. They felt that she would be better of in a cardiac unit preferrably where her surgery happen. So at 1:45pm we were off in a helicopter on our way to CHLA. We are back at the Ronald McDonald house until...

Amber is still intubated, blood gas is good for now and she is constantly sedated so she can rest. Dr. Starnes will check on her on Monday morning. They have also done an EKG to figure out if the problem is with the heart (post surgery issues) or do more tests to see if its with the lungs (lung infection/pnemonia).

I feel like my heart can not break into any more pieces, that the life is sucked out of my body and soul each time we take a step back. Kurt is feeling the same way and we've come to a conclusion as to why. We felt that once her heart was fixed things would start to look up, once her heart was fixed she would be in recovery and then come home, once her heart was fixed... so we looked to the surgery as our goal and now... her heart IS fixed. The future is not clear as to what would be next for Amber. I speak to God everyday, I feel good that she is in his hands but it doesn't change the pain I feel when I see her with tubes and wires. It doesn't take away the tears I cry when I think of her being in LA by herself because I am here trying to put on a happy face for Taylor's birthday party. My faith, hope or trust that God is with her doesn't take away the experiences I've had with the uncaring nurses in my absence. I pray and thank you for praying with me...

Every Hour

Every day, every hour things change with Amber. Yesterday they extubated, this morning she was struggling so instead of the nasal canala (the tube that goes across her nose like a mustache giving her oxygen) they were trying to decide whether to re-intubate or use sipap. In case you didn't know intubate is a tube that goes in her mouth or nose and down her throat to her lungs to assist or provide oxygen. Sipap is a little triangle that covers her nose and provides oxygen from tubes that don't go down her throat, they sit over her head (see picture). Needless to say they decided to keep her extubated and use the sipap to provide oxygen. They tested her blood gas - carbon dioxide and ph should be 60 & 6.9 - @ 10am it was 115 & 7.53. They wanted to give her a chance to get strong @ 1030am it 110 & 7.53 so it was going down a little. They waited an hour @ 1130 it was 74 & 6.9, GREAT it's going down, she's was also resting and calm, no narcotics. I got to hold her for an hour and a half after not being able to hold her for over two weeks. I was so happy, she was calm and resting. I even took this picture with my phone to send to Kurt... "guess who I am holding". Later Linda, my mother-in-law came and held her for an hour, still calm and resting.

At 730pm, Mission Hospital called the house, her gasses were up high again, they are unable to keep her calm even with narcotics, she had to be re-intubated...

Thank you for always thinking of us, thank you for your prayers, thank you for your jokes and silly things that make me smile :-) thank you for being there.... here.

Pnemonia

I am not sure if the lung infection was mild or if it was always pnemonia but today they said she has pnemonia. They are not sure if extubating will be a good idea since the mucus secretions are suctioned from her breathing tube. The decision would be made by the night doctor around 4pm. At 5pm she was extubated, she is having a hard time breathing on her own. Her face and head is still swollen, possible reasons; surgery, pnemonia, breathing tube, still trying to figure out. They want to see how much she can do on her own.

I pray for her to release the fluids that make her swollen, for her to figure out how to breath calmly with her fixed heart, for her to get rest and for the pnemonia to clear up.

Thank you for your text, emails, positive thoughts and prayers.

HOPE, FAITH and LOVE I hear what you are saying to me....

Mission Hospital

On Monday we found out that even professional people are not as professional as they should be. We learned that regardless of what people say it's best... God DOES know what's best. Amber was suppose to go to Orange CHOC to finish recovery but instead she is closer to home where the nurses know Amber and know us, she was transferred to Mission CHOC to finish recovery. She is still intubated, they will make the decision to extubate when they think she is ready. Dr. Goodman is in charge of her, he was also the doctor that assisted when she was delivered. She is a little swollen not sure why.

Today, I stopped by to thank all the people in my bible study group in person. I said thank you for all your prayers, please keep praying for her so they can extubate and let her heart start working like it should. To give her strength, protect her brain and let her recovery smoothly. We prayed together and then I left. When I got to the hospital they said they were thinking about extubating after doing a 24 hr test sprint. So this means they will let her breath on her own while intubated for 15 mins 4 times during one shift, evalutate and contunie for another shift. If she does well they will extubate. Tonight she did very well during the 15 minute sprints so for the next shift they will try 20 minutes.

Post Surgery

Amber is doing great, a few minor bumps, but great. I haven't seen her in a two days because I have bronchitis... yeah me. I should be able to see her tonight after 24 hours of antibiotics. Kurt says she looks good and is resting. The nurses say she has a lung infection that should clear up quickly, they tested it and found the right type of antibiotics that will clear it up. There is another child that needs surgery so she will be transferred back to Orange CHOC Sunday or Monday to finish recovery there. I think it will be better since she will be closer. They were unable to extubate because she stopped breathing when they tried, they didn't seem too concerned about it due to her recent surgery... will ask more tonight. Kyana has a cold and Taylor turned 5 today, her stitches come out tomorrow, Sunday.

I know some of you are wondering about the brain thing. I am sorry to have dropped a bomb on you without information. Basically, when she was about two weeks old they did a MRI at Orange CHOC which found an old blood clot and more fluid on the right ventrical of the brain. The doctors said it was too soon to say but it could affect her cognative learning, muscle mass, etc... too soon to know. Before her surgery they had to make sure the brain was stable for surgery to avoid brain damage, they found the clot and the excess fluid. This time they didn't candy coat it, they actually said we needed to do more tests. First, the dried up clot means a vein attached to the brain and to the skull pulled away causing the bleeding. (Don't know how many of these are around the brain or if it's just one). Second, they are not sure if the brain is growing, there are signs of excess fluid outside the brain between it and the skull. Third, there is significant fluid in the right ventrical of the brain, not the small amount projected two months ago. What does this mean? She can have a list of problems from growing, walk, talking, learning to eating, feeling, understanding. All this the night before heart surgery. It was hard to be grateful for all the positive that came from her heart surgery thinking about our next step. Her surgery was such a success in every way possible but my heart and mind could not stop thinking about what her life will be.

My mom keeps reminding me that she is a miracle and that this brain thing will also clear itself soon. A miracle, what if I can only have one miracle, was it her birth? Her heart surgery? Her, all together no matter how many bumps are on the road? How do you keep going? How do you find trust, faith, and grace in so many daily changes and daily challenges?

Surgery Day/Night

Thank you Robbie and Kelly for keeping the updates coming to everyone throughout the day. My in-laws were able to keep up knowing the new information because of you.

Here is what happened: Amber's surgery went very well best outcome possible. They closed the atrium or divided it and fixed the tricuspid valve. They closed her up because there was little to no swelling. She has two instead of three tubes for draining. They said two weeks of recovery in hospital and then home. She is doing great, the amount of additional medications is also minimal which is great. They will try to extubate tomorrow, take the draining tubes out on Sunday and send her to recovery by Monday... all great and excellent news. The Lord is in everything and I can see that but it's so hard to get a grip of it when it's happening. Thank you for all your prayers, you know they were being heard, you know we were all praying at the same time for Amber, thank you.

I will blog about our next challenge we just found out the night I sent the email with all my emotions but another day. Today lets rejoice in the outcome of this surgery and Amber's recovery.

It's Tomorrow

So many of you have given us praise for our strength. I can tell you that today right now, Kurt is holding down the fort. I am a mess, I know what I need to do but I can't. At this moment I can't stop crying, I can't stop thinking, I can't stop wishing, I can't stop worrying, I can't... I am so scared, so sad and I am trying not to be angry. So let me stop for a second to tell you that her surgery is scheduled for tomorrow first thing at 6:30am. My best friend, Maria, coming through again, will be coming to spend the night to be with the girls. Toni Long will be taking care of Kyana for school. Thank you so much ladies. I will be leaving as soon as Maria gets here. Please pray for my Amber... Love you all.

The plan. 1: fix ASD and valve. 2: if not good enough, see if big enough for artificial valve (probably not) 3: if not good enough, and heart too small for artificial valve, do Starnes Procedure - close off right side of heart and bypass it. It may be reversed later.

Grandparents

Not Today After All

So Amber was being prep for surgery today. Dr Starnes just got back in the morning, had his first surgery and Amber would be at 10am, this didn't happen which was actually better (we think). He felt he didn't have enough time to study all her tests and be prepared enough to go in. We should know more soon and verify if surgery will be on Thursday for sure. She is also not sick which is great. She is being feed again and is doing wonderfully. Kurt is there with her and will be talking to the doctors and keep me updated.

If you select to follow the blog on the left side of this page, under the page with her pictures, you will get an email each time I put an update. You can also send this to any and all of the people who are praying and following Amber's journey. It's amazing to know my little girl is bringing together the world... no really. Prayers, good thoughts and love come from India, Nicaragua, Texas, Oklahoma, Washington, New York, Arizona, California... and still adding.

Thank you again and have a great day :-)

What a Sunday

First, I've been sick since Wednesday night, on Friday I got 102.8 fever... after consulting with my personal nurse Mrs. Kelly Petke :-) I took Tylenol and Motrin to break the fever... Saturday went better but achy all over on and off. Then today my temperature started to creep up 100.6 so I went to the ER in case it was something serious. After looking like a Swine Flu suspect with a mask and constant cough, they said is viral, go home rest, plenty of fluids, motrin, let it run it's course, after 4 hours I was finally going home.
















On my way home, I waved at Kurt and the girls on Antonio Street... they were on their way to the ER. Taylor fell from her bike outside our home and split her chin (again), she got 13 stitches - four inside and nine outside. Kyana is great just scared from the little earthquake (did you feel it? They say it was a 4.7 in Hawthorne). I hope she doesn't get sick or anything that will take her to the ER.

Now my Amber (which I think caused the earthquake, read and you decide), I called to see how she was doing, now at CHLA. They said great, no problems feeds going well and that she would be having surgery tomorrow... TOMORROW !! They said that Dr Starnes is back tomorrow and had three surgeries scheduled but two of the kids are sick and can not have surgery so she got moved up. Since I was sick they will run extra tests but they don't see any problems as of yet from tests this morning, except a small increase in the white cells so they will check again in the morning. Either way they will speak with us before surgery and we need to consent or nothing will happen. I hung up with them to call Kurt and the earthquake happen...

Anyways, my poor husband left the ER, came home grabbed a late dinner sandwich and was on his way to LA. He said three of my girls had to visit the hospital don't make it five (Kyana and my mom). My mom is here today and Kurt's mom will be on her way soon.

Thank you for all your support... please pray for this surgery to happen when it's suppose to happen, for Dr Starnes and Staff to do what they need to do with patience and accuracy, for Amber to continue to be strong and come out of this smoothly and for our family to continue this journey together as much as we can be.

Lots of Love,
Kurt & Jessie

Dr. Starnes Is Back - CHLA

Good morning/evening everyone,

Thank you for all your prayers, thanks to you Dr. Starnes is back from his family emergency and will be available for Amber after all. We no longer need to search for a new cardiovascular surgeon. I give lots of thanks to God for knowing what our path should be, for watching after my Amber and for keeping us together as much as possible.

On Friday, May 9th she had a bronchoscopy to examine her throat, airway and vocal cords... all is normal no problems. They took pictures of everything, its pretty cool.

On Monday, May 11th she had a Cardiac Catheterization to examine her heart, they put a camera through her left leg artery and video taped everything. All is normal and in the right place just waiting for the surgery to make the separation of the chambers and maybe close the leek of the tricuspid valve.

On Thursday, May 14th I started to feel sick but wanted to visit Amber before she is transferred to LA for surgery. When I got there (I am glad I convinced myself to go for a few minutes) the nurses were outside talking while her alarms were going off. She was sweaty, crying, dirty and no one there. As most of you know mama bears and lions protect their young now add ghetto to it. They got an ear full and a call to customer service, now they are on Amber watch, I just hope it continues when she goes to LA.

Today, Saturday, May 16th, I am sick like a dog. I was not able to visit Amber. Kurt, Kyana and Taylor are on a family campout in San Diego having fun. I am home waiting for the call that she is leaving Orange CHOC. They've called that the ambulance is on their way. Not sure why they finally listened or whether it was a good idea after all but no helicopter this time :-)... just got the call 5:35pm on her way to LA from Orange. We were penciled in for surgery on Thursday, May 21, pending her transfer to LA and bed availability.

Please pray for a safe journey, for the staff to watch after her, for the surgery to go as scheduled on Thursday and for its success. We are not only knocking on surgery's door but looking at four weeks for recovery in the hospital. This will bring my girls (Kyana & Taylor) to the end of the school year with us running around. I will be calling on all of you who offered to help with carpooling :-) I hope you are ready....

Thank you to the Hockman's for taking the girls on Saturday so I can visit with Amber while Kurt was at work. Thank you Kim V., for picking up Taylor so I can yell at the hospital staff without rushing out. Thank you Mike & Clare for the swing/rocking chair we got it yesterday. Thank you Janet for your devotion book that I read every chance I get. Thank you Michelle H., for your deep freezer for my milk that will allow for it to last longer and to you and Zach for watching the girls the first time I was nice about them watching after Amber. Thank you Robbie for keeping the other part of my milk. Thank you Alyson H., for our talk the other day. I know God has a plan, I know we are always tested and its up to us to have faith and patience for things to reveal themselves. A few days ago we were nervous and worried about looking for a new surgeon today she is on her way to the hospital that will fix her. Thank you for all your text messages, positive thoughts, prayers, and for watching after my girls. Thanks Robbie for bring them those little goodies the other day. I am trying to move these emails to a blog type of communication... it will be easier to have you check rather then trying to email every day or something.

I am so grateful for all of you... my little eyeglass wearing angel.
























Love,

Kurt & Jessie

PS Grandma Linda I know your bags are packed so come over whenever you are ready and back from visiting your friend. Alaina come anytime you are ready also the more family is around the easier it will be to be away with Amber for me while Kurt is at work. Remember she will be in LA all this time.... as far as I know. We love you ladies and can't wait to see you.

Going From Mission CHOC to Orange CHOC

Hi everyone,

As you know our lives are a roller coaster and as we were going up, the ride just dropped... Today during my morning visit at Mission CHOC, a Cardio Dr from Orange CHOC called asking about Amber. He then said it would be best to have her at Orange to do some test to move forward. They said she would be transferred tomorrow maybe Friday. As I walk out the door from Amber's room they said it would be sometime today. As I drive down the street, I called to ask why she was going again, they explain and said "she's leaving right now". Amber is now at Orange CHOC for further testing of her heart and possibly going to do a heart catheter which will show how her heart works... etc.

Mike V., Janel G., and Molly R.... as soon as I have doctor/heart questions I will be contacting you... thank you for offering to clarify my doubts.




















So I finally got in the picture: Amber and me at her first family walk when she was home... In her styling stroller from the "Kindergarten Moms" And my mom and her talking about all sorts of stuff yesterday (Tues. 05/05/09)



















As always thank you for all your thoughts, prayers, text messages, love and support... for all you moms... Happy Mother's Day on Sunday, hope you have a great day.

Love,
Kurt and Jessie

Still In The Hospital

Good evening everyone,

I feel like Captain Kirk... Captain's Log

Well Amber was suppose to be in the hospital Monday and Tuesday with the possibility of coming home Tuesday or Wednesday. On Wednesday, she had a bad day and after having no IV they called to say they needed to put one in her arm for medicine to calm her down. She was upset for an hour and ten minutes and inconsolable. I think for normal babies this would be colic, gas or just plain upset, with Amber this means a lot of hard work for her heart and loss of calories. They are trying to help her with gas (she can't burp because of the nissen fundoplication). They are also trying to help her move the milk out of her tummy. At home we were doing continuous feeds 55 cc (a little under 2 oz) over an hour. Right now they are doing continuous all day long about 10 cc an hour, this afternoon they changed it to 20 cc. Tonight they are going to try to do continuous but in the morning they will go back to 55 cc in an hour. If all goes well they might let her go home early next week again.

Cardiology - the doctor (Dr. Starnes) we thought would be doing her surgery has a family emergency and won't be back until mid June. We are now stuck looking for a new doctor to fix the common atrium and the leaky tricuspid valve. There is a doctor at CHLA taking the place of the original Dr. (Dr. Harrington) but we don't know anything about her. We are going to have Dr. Gates (In Orange CHOC) revisit Amber's case and see if he can do the procedure. He originally saw her at two days old and wanted to wait until she was older and heavier. There is also another Doctor in San Diego that our cardiologist is recommending. So we have a lot to do, since everyday is a new day with uncertainty. I was told I was in an iceberg that could shift either direction or melt but my outcome would be the same... it sounded different when we talked about it. The reason why they want her bigger, stronger, older... the heart surgery would be done, her chest would stay open for four to five days to allow for swelling to go down and fluids to drain. They would put a plastic over to prevent from infection but she would be open. She would then be closed and stay in the hospital another four weeks for recovery. She would go home and require six more weeks for full recovery. I don't share this to scare you, only to bring you into my reality.

As always thank you for your prayers, positive energy, good thoughts and love...

Good night and lots of love,
Jessie and Kurt