Hi Everyone,
Here is my weekly update and it's been a really crazy week.
So I thought Amber would be going to LA on Monday instead they came to pick her up at midnight on Sunday. (But it wasn't that simple of a Sunday). They said 4pm then it was 7pm then well you know midnight. Since we don't have any control on how they transport kids from one hospital to another, Amber got a ride there via helicopter. I've now figured that the quicker they can get her the quicker they can start to bill the insurance :-)
On Monday Kurt was already there and I showed up later. Eye Dr evaluated and set surgery for Tuesday afternoon. Tuesday's surgery went well, I went home that night to be with girls in the morning. Wednesday morning Taylor has pink eye, take to doctors then head out for LA to see Amber. Kurt staying in LA all week going to work from there. I went back home Wednesday night and stayed home. Dr.s say Amber is doing well should go back to CHOC in Orange Thursday or Friday.
Thursday, Amber's numbers (stats/gases) not so well have to keep her until stable for 24 hrs. Friday, she is better but had to shave part of her head to find vein for new IV still trying to get her back to her feeds before going back to CHOC. They said she would be going on Saturday to call in the morning to find out what time. Called in the morning they didn't know what time, 30 mins later they call saying she was leaving in 15 minutes but her breastmilk had to be picked up by us it would not be transported with her. I have no idea how milk got there in a helicopter but not back in an ambulance. We called CHOC to request they take it, LA said no, it's their policy. Kurt had to go check out of the Ronald McDonald house anyways so he went to LA. I rushed to CHOC with the girls to bring milk to Amber before her next feeding.
Today, Sunday - Amber is doing well she weighs 6 lbs 7 oz (her birth weight with all the fluids), she is drinking 50 cc = 1 1/2 oz about. She has been needing assistance with oxygen since the gastro/fundo surgery a few weeks ago. They are trying to take her out of it but it might be something she will come home with... I still don't know when that will be. Kyana is still the big sister loving on both, combing Taylor's hair in the morning with pony tail and all, reading stories to Amber every time we visit. She is such a loving, sweet girl.
I thank you for all your prayers, good thoughts, texts, emails, and phone calls. I am so blessed to have you in my life. I was so afraid to move to Rancho Santa Margarita it was really easy to make friends with moms in Aliso Viejo once I stopped working. They are wonderful women and I couldn't imagine meeting a group of women more wonderful. Then I met another equally wonderful group of moms while Kyana was in Kindergarten (also know as the Kindergarten moms because of it). Not only have they helped paint, move and arrange my girls rooms, they've organized something wonderful that has given me peace of mind. Thank you Kelly for being the ring leader... She asked how can we help your mom provides the meal for you, the girls are taken care of on any given day, we want to help how can we help. I said I am ok the only thing I need is to clean my house before Amber comes home, it's been a few months. I just hope they give me enough notice so I can clean it really good. I can't ask you to clean my house so don't worry that's all I need for right now. Two days later I had a crew of three people cleaning my entire house... ENTIRE HOUSE. Thank you to all who contributed or were involved in one way or another. I will get a list from Kelly soon and thank you personally. You are all awesome people, your love gives me strength. You all make me smile when I am sad. I thank you for jumping into my roller coaster and holding my hand. Kurt and I are taking things one day at a time and truly thank you.
Love you,
Jessie
PS Thank you Angela for the Musical Jumper, Charlie for leading me her husband Jim to find the smoke alarm that needed battery change to stop beeping, my neighbor Liz for the Oatmeal/chocolate chip dessert (I was running out of oatmeal cookies my mother in law had made for me to help with milk production and then the doorbell rang). Thank you Pastor Leland for your calls and prayers, for keeping everyone informed and praying for us. Thank you, thank you, thank you to all. Have a good night and wish me an easier week (hey one can only hope)
Sunday, March 29, 2009
Sunday, March 22, 2009
March 22, 2009
So I was going to send you a quick update of all but now I have to add a special prayer for Amber's surgery on Monday (it is what they are saying today).
She was suppose to go to LA on Tuesday, she was not well and they didn't have room for her so they set it for Saturday. They still did not have room for her so they said Monday with surgery on Tuesday. Today (Sunday) we visited her and left, after being home for 20 minutes they called from LA saying the would be picking her up via helicopter in 30 minutes for surgery tomorrow (Monday). Amber is now 6 lbs and doing fairly well with feeds via g-tube. Once she is stable she will be able to come home, she needs a little oxygen right now but it's mainly on room air. This surgery will also get us one step closer to her coming home. Please pray that it all goes well in the next few days and that the surgery goes as scheduled on Monday.
Your prayers are so powerful, here is an update of your answered prayers:
Amber continues to take more steps forward than back.
Joy (mom - Joanna) - went home after a few days.
Graciela (mom - Yolanda) - was able to continue the feedings, get better at breastfeeding and went home last week.
Molly (mom - Lori, twin brother - Jacob) - is doing well with her feeding, no need for heart surgery after all until she is older and will be going home on Tuesday.
I am loosing all the friends I've made, I will need to make new friends there :-)
Miss Kitty - Taylor will not be at school tomorrow.
Mrs Elkin - Kyana will not be at school tomorrow.
- the girls will be at my brother's house and will spend the night at my mom's while we stay with Amber and figure out what's next.
Ladies... to all who have volunteer to help with my girls, I will be calling you soon on Wednesday, Thursday and Friday for coverage. Love you and thank you ahead of time.
To everyone... thank you for all your support, positive vibe, and prayers, love you all.
Jessie and Kurt
She was suppose to go to LA on Tuesday, she was not well and they didn't have room for her so they set it for Saturday. They still did not have room for her so they said Monday with surgery on Tuesday. Today (Sunday) we visited her and left, after being home for 20 minutes they called from LA saying the would be picking her up via helicopter in 30 minutes for surgery tomorrow (Monday). Amber is now 6 lbs and doing fairly well with feeds via g-tube. Once she is stable she will be able to come home, she needs a little oxygen right now but it's mainly on room air. This surgery will also get us one step closer to her coming home. Please pray that it all goes well in the next few days and that the surgery goes as scheduled on Monday.
Your prayers are so powerful, here is an update of your answered prayers:
Amber continues to take more steps forward than back.
Joy (mom - Joanna) - went home after a few days.
Graciela (mom - Yolanda) - was able to continue the feedings, get better at breastfeeding and went home last week.
Molly (mom - Lori, twin brother - Jacob) - is doing well with her feeding, no need for heart surgery after all until she is older and will be going home on Tuesday.
I am loosing all the friends I've made, I will need to make new friends there :-)
Miss Kitty - Taylor will not be at school tomorrow.
Mrs Elkin - Kyana will not be at school tomorrow.
- the girls will be at my brother's house and will spend the night at my mom's while we stay with Amber and figure out what's next.
Ladies... to all who have volunteer to help with my girls, I will be calling you soon on Wednesday, Thursday and Friday for coverage. Love you and thank you ahead of time.
To everyone... thank you for all your support, positive vibe, and prayers, love you all.
Jessie and Kurt
Saturday, March 14, 2009
March 14, 2009
Hi everyone,
Thank you for your prayers Amber's surgery on Thursday (sorry not Wednesday) went well. According to the nurses and doctors she is recovering well, according to me she is in pain. I know babies are strong and she will not remember this time but it's hard to see her (sorry no pictures this time). On Friday, she was using a breathing tube and in a ventilator, today (Saturday) she is back to her crib and with just a small tube across her nose for oxygen. She has an eye infection since Wednesday but they say it should be cleared by Sunday... her eyes were puffy today. I asked if the infection was getting worst because of her puffy eyes, they said no it's because she is crying so much. I am not sure how to feel about that but I know I can only wait and hope she continues to recover and feel better.
She has an IV, they will start to feed her through the g-tube tonight or tomorrow. However, since she is suppose to go to CHLA next week they will keep the probe in for their IV. She's suppose to go on Tuesday, get checked on Wednesday and have one eye done on Thursday. We are not sure if she will stay or come back for the next eye we should know more on Monday or Tuesday.
Thank you again... love,
Jessie
Thank you for your prayers Amber's surgery on Thursday (sorry not Wednesday) went well. According to the nurses and doctors she is recovering well, according to me she is in pain. I know babies are strong and she will not remember this time but it's hard to see her (sorry no pictures this time). On Friday, she was using a breathing tube and in a ventilator, today (Saturday) she is back to her crib and with just a small tube across her nose for oxygen. She has an eye infection since Wednesday but they say it should be cleared by Sunday... her eyes were puffy today. I asked if the infection was getting worst because of her puffy eyes, they said no it's because she is crying so much. I am not sure how to feel about that but I know I can only wait and hope she continues to recover and feel better.
She has an IV, they will start to feed her through the g-tube tonight or tomorrow. However, since she is suppose to go to CHLA next week they will keep the probe in for their IV. She's suppose to go on Tuesday, get checked on Wednesday and have one eye done on Thursday. We are not sure if she will stay or come back for the next eye we should know more on Monday or Tuesday.
Thank you again... love,
Jessie
Wednesday, March 11, 2009
March 11, 2009
Hi everyone,
Please have extra prayers going Amber's way tomorrow (Wednesday) she is having surgery. Her feeding did not go as planned because she is not protecting her airway. So they had to stop working with her since milk was getting into her lungs which could cause pneumonia and other complications. She will have to be fed through a tube in her stomach and they also have to do a Nissen Fundoplication to tighten the esophagus. The Fundo is so that she doesn't spit up and cause the same problem when the fluid goes back down.
Once she goes home she will have outpatient therapy to work on her throat muscles in the meantime she needs to continue to eat. The tube is the best way to get home before her heart surgery and help her gain weight. Once she can feed and swallow on her own the tube will come out, however, the fundo will stay in place which we are not happy about. The eye surgery to remove the cataracts looks like it will be some time early next week but that will be the next chapter, I have to concentrate on tomorrow for now.
Thank you again, (see her latest paparazzi pics... she was one month old on Tuesday, March 10th :-) )
Jessie
PS Joanna and Joy went home on Tuesday... I continue to pray that Joanna is confident in taking care of Joy and all her needs. Thank you for your prayers for them it was a great day the whole family was there to take this liprecious baby home... can't wait
Please have extra prayers going Amber's way tomorrow (Wednesday) she is having surgery. Her feeding did not go as planned because she is not protecting her airway. So they had to stop working with her since milk was getting into her lungs which could cause pneumonia and other complications. She will have to be fed through a tube in her stomach and they also have to do a Nissen Fundoplication to tighten the esophagus. The Fundo is so that she doesn't spit up and cause the same problem when the fluid goes back down.
Once she goes home she will have outpatient therapy to work on her throat muscles in the meantime she needs to continue to eat. The tube is the best way to get home before her heart surgery and help her gain weight. Once she can feed and swallow on her own the tube will come out, however, the fundo will stay in place which we are not happy about. The eye surgery to remove the cataracts looks like it will be some time early next week but that will be the next chapter, I have to concentrate on tomorrow for now.
Thank you again, (see her latest paparazzi pics... she was one month old on Tuesday, March 10th :-) )
Jessie
PS Joanna and Joy went home on Tuesday... I continue to pray that Joanna is confident in taking care of Joy and all her needs. Thank you for your prayers for them it was a great day the whole family was there to take this liprecious baby home... can't wait
Friday, March 6, 2009
March 6, 2009
Hi everyone,
Thank you again for continuing to pray for Amber and our family. Also for continuing to offer to help with anything we need. The time will come soon when I will be calling on you... Amber will in LA and I will need coverage with the girls on a few days.
Kelly, Amy and Wetzel - Thank you for finishing the girls rooms, Taylor loved all her Tinker Bell stuff. I got her Tinker Bell bedding which completed the room for a priceless look on her face... thank you.
Suzanne, Robbie, Katrina, Barbara, Charlene, May, Cindi, and Helen - Thank you for the baby gifts and gift cards, I was able to purchase her Alphabet Soup Mobile to put in her crib at the hospital, some blankets for her to keep at the hospital and little clothes to dress her. She can only wear onesies and jumpers with buttons in the middle so it makes it hard to use thing we already have, I had to get all new stuff for her... no zippers or slip over.
NO NAME GIFT - We had one of the things I registered for from Target delivered to the house the other day with no name and no card... anyone?? If you can tell me what it was you get the credit for it :-)
UPDATE: Amber is doing great she weights 5 lbs 5 oz as of today (See attached pictures). As they do more test to answer her heart condition and prepare us for the future they rule out more things without answers. However, an eye test revealed she has cataracts in both eyes. This will require surgery by a specialist in LA, she will be transferred some time next week or so. Because of her heart, they will do one eye at a time, not sure if she will go and come back each time or just go once and come back after they are done. Also, she is not doing well with the swallowing so they will be putting a G tube in her stomach for feeding. Once all this is done she will be coming home :-). They will operate on her heart when she is 6 to 9 months old (they are looking for growth and strength). I asked what is the growth they are looking for? They said 9 to 10 lbs... So please help me pray for a successful surgery on both eyes and removal of the cataracts. Pray for continual growth to prepare for heart surgery later. Pray for no infections with this G tube, for us to feel comfortable with it once she is home and for the girls not to be too curious about it and let it be. Pray for overall continued health with her heart, oxygen and growth. And most of all, help us say thanks to God for all the positive that she has gone through and for how strong my little angel is.
Thank you and love you all for you support and love,
Jessie
Thank you again for continuing to pray for Amber and our family. Also for continuing to offer to help with anything we need. The time will come soon when I will be calling on you... Amber will in LA and I will need coverage with the girls on a few days.
Kelly, Amy and Wetzel - Thank you for finishing the girls rooms, Taylor loved all her Tinker Bell stuff. I got her Tinker Bell bedding which completed the room for a priceless look on her face... thank you.
Suzanne, Robbie, Katrina, Barbara, Charlene, May, Cindi, and Helen - Thank you for the baby gifts and gift cards, I was able to purchase her Alphabet Soup Mobile to put in her crib at the hospital, some blankets for her to keep at the hospital and little clothes to dress her. She can only wear onesies and jumpers with buttons in the middle so it makes it hard to use thing we already have, I had to get all new stuff for her... no zippers or slip over.
NO NAME GIFT - We had one of the things I registered for from Target delivered to the house the other day with no name and no card... anyone?? If you can tell me what it was you get the credit for it :-)
UPDATE: Amber is doing great she weights 5 lbs 5 oz as of today (See attached pictures). As they do more test to answer her heart condition and prepare us for the future they rule out more things without answers. However, an eye test revealed she has cataracts in both eyes. This will require surgery by a specialist in LA, she will be transferred some time next week or so. Because of her heart, they will do one eye at a time, not sure if she will go and come back each time or just go once and come back after they are done. Also, she is not doing well with the swallowing so they will be putting a G tube in her stomach for feeding. Once all this is done she will be coming home :-). They will operate on her heart when she is 6 to 9 months old (they are looking for growth and strength). I asked what is the growth they are looking for? They said 9 to 10 lbs... So please help me pray for a successful surgery on both eyes and removal of the cataracts. Pray for continual growth to prepare for heart surgery later. Pray for no infections with this G tube, for us to feel comfortable with it once she is home and for the girls not to be too curious about it and let it be. Pray for overall continued health with her heart, oxygen and growth. And most of all, help us say thanks to God for all the positive that she has gone through and for how strong my little angel is.
Thank you and love you all for you support and love,
Jessie
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