Good morning,
So we are back at the hospital... hopefully just for a day or two. Amber was not doing too well the other day (Monday) she had been breathing funny. Even though we had suctioned her nose and throat she had a lot of white mucus in the back of her nose and throat that caused her respiratory distress. We were given our new reality... until her heart is fixed we will be in the ER every time she has a cold or anything that can cause her respiratory stress. They are testing the white mucusy stuff to see if it's an infection or something. This will determine if she will need to go home with a breathing treatment or not. This time was not as crazy as the last time. I noticed there was something wrong, her color had changed and the signs from before were there, I called my neighbor Molly (Thank you Molly for all your help) who came over, increased her oxygen again from what I had increased and determined it was best to get her in the ER for further evaluation. As before I did have company my other best friend Melanie and our brother Al were there with little Ethan. Thank you Al for the most delicious lunch, Mel for your support and calmness and Ethan for being so cute and easy going. Thanks guys.
Well have to shower and go to hospital, thank you for all your prayers and continued support.
Love,
Jessie & Kurt
Monday, April 27, 2009
Thursday, April 23, 2009
She's Home Again
Hi Everyone,
Another interesting Update... I feel like the Spanish version of Lucy Ricardo sometimes. So as you know my little Amber is home. She is doing well and resting... Kurt and I on the other hand not so much rest but doing well. The girls just love on their sister every day and every chance they get.
So She was discharged from Orange CHOC on Saturday, April 18th at 5pm. Each day she cries a little less because she's getting use to being home. We've done baths and changed many diapers. I've even gone out to doctor appointments as a matter of fact it went so well at her Pediatrician's appointment I decided to go twice to her cardiology appointment. Actually I had the wrong time went at 10am but the appointment was at 1pm and doctor comes in at 1pm so they couldn't do anything but take her weight, fill out paper work and laugh about my adventure. She has also gotten her first official haircut or shave to fix what the nurses at CHLA have done (leaving patches of hair here and there trying to find an IV site.)
I have a list of all that contributed to the carseat, house cleaning and extra cash that has so far bought a musical swing that we did not have. I will personally send out thank you cards please don't say no, it's the only way I can actually show you how thankful I am by taking the time I can spare to thank you. Now if you don't get a thank you card by this time next year let me know and I will make sure you get one :-)
Please continue to pray that Amber continues to thrive at home, that the girls continue to be patient and loving towards their baby sister, that Kurt and I can keep our sanity, that my mom let's go of her insecurities and fears of Amber's many cares and that my in-laws can make it here during the summer to entertain the girls while we deal with Amber's next phase (heart surgery).
Thank you to Tracy G., Amy V., Kelly P., Michelle H., Melanie P., Robbie B., Maria P., and Molly R. for sending me (collectively) daily text messages of positive energy and love :-) Love you ladies, you are great.
And of course thank you for praying and keeping us in positive light.... God is listening and I am so grateful for the out comes. (Attached you will find some pictures.)
Love,
Kurt and Jessie
PS Remember to keep Mikey, Graciela, Joy, and Molly in your prayers too :-) Good night
Another interesting Update... I feel like the Spanish version of Lucy Ricardo sometimes. So as you know my little Amber is home. She is doing well and resting... Kurt and I on the other hand not so much rest but doing well. The girls just love on their sister every day and every chance they get.
So She was discharged from Orange CHOC on Saturday, April 18th at 5pm. Each day she cries a little less because she's getting use to being home. We've done baths and changed many diapers. I've even gone out to doctor appointments as a matter of fact it went so well at her Pediatrician's appointment I decided to go twice to her cardiology appointment. Actually I had the wrong time went at 10am but the appointment was at 1pm and doctor comes in at 1pm so they couldn't do anything but take her weight, fill out paper work and laugh about my adventure. She has also gotten her first official haircut or shave to fix what the nurses at CHLA have done (leaving patches of hair here and there trying to find an IV site.)
I have a list of all that contributed to the carseat, house cleaning and extra cash that has so far bought a musical swing that we did not have. I will personally send out thank you cards please don't say no, it's the only way I can actually show you how thankful I am by taking the time I can spare to thank you. Now if you don't get a thank you card by this time next year let me know and I will make sure you get one :-)
Please continue to pray that Amber continues to thrive at home, that the girls continue to be patient and loving towards their baby sister, that Kurt and I can keep our sanity, that my mom let's go of her insecurities and fears of Amber's many cares and that my in-laws can make it here during the summer to entertain the girls while we deal with Amber's next phase (heart surgery).
Thank you to Tracy G., Amy V., Kelly P., Michelle H., Melanie P., Robbie B., Maria P., and Molly R. for sending me (collectively) daily text messages of positive energy and love :-) Love you ladies, you are great.
And of course thank you for praying and keeping us in positive light.... God is listening and I am so grateful for the out comes. (Attached you will find some pictures.)
Love,
Kurt and Jessie
PS Remember to keep Mikey, Graciela, Joy, and Molly in your prayers too :-) Good night
Friday, April 17, 2009
Coming Home Soon - Again
Hi everyone,
As you know last time Amber came home I found out the same day and once she was here I did not have a chance to tell anyone before I knew it she was back in the hospital.
So let me now give you a little bit of notice Amber is expected to come home in the next few days at the latest Monday but as soon as tomorrow (Saturday). I will make sure to text someone who is next to a computer so they send the update to all that she is home. Molly I will make sure I call you or that Kurt calls you for sure :-)
While I was at the Ronald McDonald House (by CHLA) I met a little boy, he was the cutest little 1 1/2 year old ever. He was smiling and giggling as his older brother played peekaboo with him. We were in the elevator so I asked the dad holding him if they were going home. He said "oh no we're not done yet, we come every month for the last six months for chemo." The elevator open and we both went our separate ways but I saw them a few times more on the floor I was at. I couldn't help but ask for his name so that you wonderful people could add him to your prayers. His name is Raymond and as his mom open the door he walked out still smiling and having a great time. I grabbed his hand and he was pulling me to go with him, he just wanted to walk around his smile never left, even though I could see his little eyes were red. I don't know how they do it, I am a mess. I see Amber most of her hair shaved off because "heart babies don't have good veins for IVs" So they say the best ones are on their head. She had the tube down her throat, her face would get red from screaming and crying but there was no sound. I feel like one thing comes after another and I don't have time to process any of it because I am off the next one....
Thank you for your prayers and continued support. Thanks Maria for watching my girls on Wednesday and Thursday while I was in LA. And for taking breastmilk to Amber at Orange CHOC since they don't transfer milk. Thanks Cathy V. for watching the girls while Maria ran off to the hospital. I know it was last minute but I am glad you were home to help me out. The girls said they had fun playing with Abby plus the got away with getting Mac & Cheese (which the usually get once a week) They scored with you :-) Thanks Sherry T. for taking my carpool, always covering me while I run around for Amber. Thanks Charlie for bringing Kyana home all week after school. And of course Thanks Robbie for keeping Amber's breakfast, lunch and dinner safely frozen.
Love you all,
Jessie & Kurt
As you know last time Amber came home I found out the same day and once she was here I did not have a chance to tell anyone before I knew it she was back in the hospital.
So let me now give you a little bit of notice Amber is expected to come home in the next few days at the latest Monday but as soon as tomorrow (Saturday). I will make sure to text someone who is next to a computer so they send the update to all that she is home. Molly I will make sure I call you or that Kurt calls you for sure :-)
While I was at the Ronald McDonald House (by CHLA) I met a little boy, he was the cutest little 1 1/2 year old ever. He was smiling and giggling as his older brother played peekaboo with him. We were in the elevator so I asked the dad holding him if they were going home. He said "oh no we're not done yet, we come every month for the last six months for chemo." The elevator open and we both went our separate ways but I saw them a few times more on the floor I was at. I couldn't help but ask for his name so that you wonderful people could add him to your prayers. His name is Raymond and as his mom open the door he walked out still smiling and having a great time. I grabbed his hand and he was pulling me to go with him, he just wanted to walk around his smile never left, even though I could see his little eyes were red. I don't know how they do it, I am a mess. I see Amber most of her hair shaved off because "heart babies don't have good veins for IVs" So they say the best ones are on their head. She had the tube down her throat, her face would get red from screaming and crying but there was no sound. I feel like one thing comes after another and I don't have time to process any of it because I am off the next one....
Thank you for your prayers and continued support. Thanks Maria for watching my girls on Wednesday and Thursday while I was in LA. And for taking breastmilk to Amber at Orange CHOC since they don't transfer milk. Thanks Cathy V. for watching the girls while Maria ran off to the hospital. I know it was last minute but I am glad you were home to help me out. The girls said they had fun playing with Abby plus the got away with getting Mac & Cheese (which the usually get once a week) They scored with you :-) Thanks Sherry T. for taking my carpool, always covering me while I run around for Amber. Thanks Charlie for bringing Kyana home all week after school. And of course Thanks Robbie for keeping Amber's breakfast, lunch and dinner safely frozen.
Love you all,
Jessie & Kurt
Sunday, April 12, 2009
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
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
Saturday, April 4, 2009
She's Coming Home
Thank you again for all your support and prayers. She is finally coming home or she might be here... it all depends on the arrival of this email. They said she was going to be discharged on Friday 04/03 afternoon.
We still have another eye surgery in LA on April 13th (No helicopter or ambulance we have to take her) This should only be three to four days then she is back home again.
We also still have the big surgery for the heart which is still scheduled to happen when she is 6 to 9 months of age.
I hope you continue to remember us in your prayers every now and then since Amber has a G-tube/Fundo for feeding (which can get infected or come out requiring medical assistance) and she is coming home with oxygen because sometimes she doesn't get enough when she breaths. These are things I am worried about but ready to handle with God and my wonderful, strong, logical, supportive and loving husband.
Oh Happy Day !!
We still have another eye surgery in LA on April 13th (No helicopter or ambulance we have to take her) This should only be three to four days then she is back home again.
We also still have the big surgery for the heart which is still scheduled to happen when she is 6 to 9 months of age.
I hope you continue to remember us in your prayers every now and then since Amber has a G-tube/Fundo for feeding (which can get infected or come out requiring medical assistance) and she is coming home with oxygen because sometimes she doesn't get enough when she breaths. These are things I am worried about but ready to handle with God and my wonderful, strong, logical, supportive and loving husband.
Oh Happy Day !!
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