December 2009

Amber is still enjoying home life :-). We are now in full effect with the contact lenses on the left eye...she hates it. We have an appoinment with Dr. Uribe about once a month to see how it's all going. We do not keep the contact lenses on that long because they keep popping out. She also might have an ear infection with would be her first one since being home.

We are looking into a special program for Amber called Early Intervention Program (EIP) in Laguna Beach. This would be a group class that targets all skills; feeding, fine motor, gross motor and social interaction.

It was very exciting to have her home for her first Christmas. The girls truly enjoy having baby sister home.

She continues to see a OT for physical therapy at home and Amanda at Mission CHOC for her feeding needs. She is starting to eat more of the Stage 1 foods but continues to drink the same amount of milk (formula).

Friends and Family

All About Amber

November 2009

This month we are so thankful to still be home... no hospitals and thriving.
HAPPY THANKSGIVING !!!!

Medically:

Neurology wants to continue to keep an eye on her everything looks ok now will follow up in 6 months. Cardiology wants to keep her on the low dose of Lasix and gave her a 2 month pass our next appointment will be in January. Ophthalmology wants to wait on left eye surgery, we will put a contact lense in the meantime until she is older or Dr feels it's time for surgery. GI says she's doing well. I pulled her MicKey button on her carseat but the site looks good (Thanks Jenell for checking it at home). Oral therapy is also going well we are on stage 1 foods, drinking 2 to 3 oz on and off and will be trying puffs soon. Physical therapy also going well she is rolling over more and more.

Socially:

Amber loves being outside and around people. She is always happy and smiling at people and kids. At home, she can't get enough of Taylor tumbling around, Kyana dancing and Daddy bouncing her up and down. We love taking her out and feel good to be more mobile with her. We are truly a family of five now.

Halloween

The Last Three Weeks

I know it's been a while but I've been really busy.... taking the girls to school, helping with homework, physical and oral therapy, doctors appointment, trying to lose weight and spending time with my wonderful husband something has to give. I am glad I've been able to keep in touch with a few of you through Facebook, I can send messages from my phone and I keep a few updates that way. Well I can tell you that Amber is doing great. Her right eye has healed beautifully and has made such a huge difference with everything. She is able to see better which helps with her physical therapy and oral therapy.

Physical therapy - Amber is still working on rolling over, she doesn't really like being on her tummy so it makes it hard. She is reaching for things, putting things in her mouth, reaching for her toes, seating without help for a little less than a minute, rolls from side to side but not to her tummy yet.

Oral therapy - We've made big steps here, she is drinking 30 to 50 cc at every meal and then the rest goes in through her feeding tube (a total of 130 cc). She had another swallow study this week and she no longer aspirates. We are moving forward she has been eating a little bit of cereal in the morning but next week we will start foods... yeah bananas are first.

She is teething too, the front tooth is coming out. She babbles a lot and just loves to be outside and around people. Taylor really entertains her with all her jumping and dancing. While Kyana is the gentle, careful one who makes sure she doesn't cry too much. Because she's high risk, all of us got the flu shot and she already got the first swine flu shot. She will get a booster of that in a month and more vaccines too. The two flu shots put her behind on vaccines even more.

So so grateful everyday, so blessed and just thankful. Please keep praying for her success... thank you so much.

Also This Week

Right Eye Surgery... Back to CHLA

On Monday, October 12th we found ourselves back in the hospital. It was different this time because we knew what was going on and why we were there but the scary feeling was the same. We hoped and prayed that we could go home right away. She looked so cute in her scrubs, ready for surgery. The plan was to go in remove the scar tissue building around her pupil (making a triangle instead of a circle) to restore the shape and to implant, if possible, a lense. Dr. Song said it would take 30-45 mins but once there they said it would be at least an hour. We left her, had lunch and came back in 30 minutes. They receptionist gave us a big scare. She had a heavy accent, I can't talk because I know I have one here and there... anyways, I couldn't tell if she spoke Spanish or something else other than English. She looked at Kurt and I saying "Apnard?" We said "Amber" She said, "Wait right here, I need to talk to you about Apnard?" again we said "Amber?" She said, very excited again "I need to talk to you about Apnard" So we thought maybe she is saying Amber and we just don't understand her because we tried to clarify. Once she was able to speak with us she said, "Are you Apnard's parents?" We said, "Our daughter's name is Amber Brubaker" She said, "Oh sorry no I am looking for Apnard's parents, I need to talk to them". Off we went to the waiting room. It was two hours later and no news from Amber. Then another nurse came in the room, looked at me and said "Lopez?" I said, "No Brubaker" she said "Oh ok looking for Lopez"... I told Kurt, I might look like a Lopez but I married a Brubaker :-)... ok back to Amber. They had a hard time getting the IV started, I wished someone would have come out and said something.

All went well. She was intubated, scar tissue removal was successful, right eye lense implant was successful, and extubation was successful. They wanted to keep her overnight just to make sure. We came home, Kurt stayed with my mom, Kyana and Taylor while I drove back to spend the night with Amber. She was discharged the next morning after the Dr. removed eye patch and checked that everything was good. She needs eye drops four times a day for a month. We had a follow up on Saturday, October 17 in Pasadena. Dr. Song says everything looks good, continue the drops, make appointment to fit left eye for a contact lense, if things don't work out with the contact lense we might need to do implant on left eye. He would rather wait as long as possible for that implant but if it needs to happen then that will be our next surgery. As for the right eye, we will have another follow up in a month.

She is doing so great... thank you for all you do for us.

We've Been Really Busy...

In the last few weeks, Amber has come a long way. We've been home for over 3 months... I can't believe it. I've realized that ambulance and fire trucks scare me or just the ones coming close to our house. I also realized that "normal" is not as "normal" as I thought. The first two kids did not come with a manual but they did a lot on their own. They ate, rolled around, seat up, picked things up to put in their mouths, ate by the ounce and found their toes all on their own. Amber has to learn how to do the basic things including her toes and we get to teach her.

She started with just drops in her pacifier and now she drinks one ounce at every meal when she's awake, she takes the rest via feeding tube. Everyday she gets stronger, rolls from tummy to back and side to side. We are still trying to get her to go from back to tummy. She had a few more vaccines last week including the flu shot which they want everyone at the house to have plus the H1N1 when it's available.

We've added a new doctor to her list for her feet or I should say toes but like all the rest we have to wait and see what happens naturally before he can actively do anything. Dr. Song her Ophthalmologist will be doing a procedure on her right eye to remove the scar tissue. It is possible for her to get a lense in her right eye since it continues to get scar tissue, we will know more on Monday, October 12th, the day of her surgery. We don't know if she will need to stay over night, it will all depend on how she does during and after surgery. Please keep her in your prayers and send all your positive energy her way. Surgery scheduled for 9am. Thank you.

I Love My Daddy

Many Blessing for Amber

It was another busy week for Miss Amber. We've started Physical Therapy on Mon/Wed/Fri at 9am. She already has Oral Therapy Tues/Thurs at 9am, so it's a very busy week. Kurt's brother Daren came for a visit. We spent Kurt's birthday with the Varricchios and had lunch with his Grandparents today.

During the week Amber saw Dr. Crocret (ENT), he said she had fluid in her left ear and prescribed an antibiotic. Saw Dr. Sami (Ophthalmology) and found out the eye drops were not helping, they will have to go in to remove the scar tissue on right eye. Also on Wednesday we noticed some bleeding from her feeding tube site. Thank you to Molly Rapini and Janel Groussman for all your medical advice. The next day we saw GI and Neurology. GI said it would be fine and that the antibiotic for the ear would also help with her feeding tube area. The Neurologist was another story... it was a scary Thursday and Friday. Thank you to my mom, Robbie Baranoff and Katrina Fineberg for covering with Kyana and Taylor while we were dealing with Amber.

We had been waiting and looking forward to our appointment with neurology, to learn more about Amber. Dr. Lott came in touched her soft spot on her head, walked out, reviewed the films from CHLA CAT scan and CHOC's MRI, touched her head, walked out, touched her head again and asked if there were any changes or if Amber had been irritable. We said yes on and off but we thought it was the new eye drops, the increase in milk volume, the cereal we were adding to her night time milk, or skipping her 1am feeding. He said I need you to go to the ER to get a CAT Scan of her brain, I feel she is having pressure and will need surgery right away to relieve the fluid. He sent us to St. Joseph's next to CHOC in Orange because they have the pediatric neuro surgeon there. After four hours of waiting, doing the scan and waiting, they felt the fluidwas not significant enough to do surgery right away. We had the option of admitting her into the hospital for them to check her in the morning or coming back in the morning to see the Neuro surgeon. We took her home and came back in the morning. Dr. Muhonen said there was no need to do a shunt, which is a lifelong, life changing procedure to relieve fluid pressure from the brain. He said any baby that has been through what Amber has goine through would be irritable. The things to look for in Amber is lack of activity, sleeping a lot and golf size bump from her soft spot. We were relieved, my prayers were answered. We will have to follow up with both Neurologist (keeping track of her outside brain activity, moving, talking, walking, etc.) and a Neuro Surgeon (keeping track of her inside brain activity, flow of fluid and brain growth). The surgeon said the amount of frontal brain fluid should go away with age, about 18 to 24 months old. He also said the brain fluid was caused by the heart defect.

It was a good ending to our week, Kurt's birthday and family time. Thank you for caring about my Amber :-), for all your good thoughts, positive energy and prayers.

Doing Great

I am late again with the blog... sorry :-(

It was a very busy week and it's not going to get any easier. The girls started school Kyana in 4th grade with Mrs. Justl (4th/5th grade combo); Taylor in Kindergarten with Mrs. Buxton (Kyana's kindergarten teacher and an awesome person all around) and Amber continues to go with Amanda her Oral therapist.

On Tuesday, Amanda found a bottle by First Years which has the same feel as her pacifier from the hospital "soothie". What a great find, she took 3 cc on Tuesday, 10 cc on Thursday and today 15 cc... she is progressing. I didn't think it could happen but we will start doing home trials this week. I will have to get some bottles myself to have a back ups. We also started physical therapy... finally... on Monday, Wednesday and Friday.

I don't have any pictures to add this time but I will next time... my external hard drive crashed without warning or explanation but my wonderful husband brought it back to life. I would have lost all my pictures and videos of the girls... ALL.

So my girls have given me no personal time unless I decide to become a vampire :-)
Kyana has school from 8:15 to 2:35pm Monday through Friday possibly going to gymnastics on Fridays. Taylor has school from 8:15 to 11:45am Monday through Friday would like to find something for her to do after school once a week. Amber has oral/physical therapy 9:00am to 9:45am Monday through Friday with the usual once, twice or more times a week doctor appointments. This week Tuesday E.N.T. says she might have an ear infection due to extra fluid in the left ear; we will do antibiotics for 10 days. Wednesday is Ophthalmology to see if she will need surgery on right eye again to remove the scar tissue. Thursday is Neurology... also finally. I hope they don't cancel or reschedule this one.

As always, thank you for your good thoughts, prayers and positive energy. I will add pictures and update on Sunday :-). Take care.

Our Busy Week

It was a very busy week... sorry I am late not our usual Sunday night. We had all the cousins over, the kids had a great time, we laughed, we ate, and everyone went home.

Amber started last week with an easy Monday but on Tuesday we are up bright and early. Tuesday we met Dr. Zadeh, genetics. She had nothing new to say, just that all the syndromes they could test her for, they've tested her for and it's all negative. They will have to wait to see how she continues to grow and develop to attach a syndrome to her. The next appointment will be in six months. She did say that anything this syndrome could have caused it has already done so, there should not be any new developments due to what she has.

On Wednesday, we saw Dr. Sami, Ophthalmology in Orange. He saw that her right eye is still pulling the pupil away from the center due to scar tissue. We have a new and different eye drop to see if this will help. If it does she will be fitted for contact lenses in two weeks, however, if it does not help we will need to go in for surgery. The surgery will be to remove the scar tissue and allow the pupil to be round again, it should be an outpatient procedure in and out.

On Thursday, we saw Dr. Grant, GI in Mission Viejo. This was an exciting appointment. We made some changes to her feeds. One we are skipping her 1am feeding so instead of 8 times a day she eats 7 times but the same amount in one day. We also added rice cereal to her milk once a day, we do this at her 10pm feed so that it helps her last through the night until 4am. We are able to get a little more sleep time. We also learned that her MicKey button will be changed every 3 to 6 months. We can bring her in to the office to get it done or do it ourselves at home... I am not sure we are ready for that adventure so when it's time we will take her in.

On Friday, we had our big Neurology appointment that got cancelled. After several calls back and forth with their office we still don't have a new date and time. I hope we hear something this week.

Amber continues to grow 13 lbs 8 oz and 24 inches long, she is doing great. Oral therapy is still going on Tuesdays and Thursdays she is progressing according to the therapist but in my eyes we have a long way to go :-( Please continue to pray for her progress, and continue to send possitive energy our way. Thank you so much for your love and friendship.

First Outing

On Tuesday, oral therapy didn't go so well. Amber did not like the bottle, the E-stem, the milk... I have no idea, she was not happy. I was hoping and praying that Thursday would be better. Thursday WAS better, she has a few swallows and was good with the bottle, we are making slow progress. On Saturday we went to Ian's 6th birthday party at the park. She had a great time. It was so good to see everyone and have everyone see how well she is doing. Angela, Eric and their families have been praying for Amber since before she was born and have followed all our ups and downs, they were so happy to witness such a great up. She loved being there, seeing all the kids run around and feel the HEAT... with some breeze here and there.

This week will be really busy and hopefully really informative. On Tuesday we will see the Genetics Doctor, Wednesday we have Ophthalmology, Thursday is GI, Friday is Neurology and of course Tuesday and Thursday our regular oral therapy sessions. It will be a busy week but we will get to learn more about Amber and what she will need in the future.

We continue to be grateful for all your wonderful and positive thoughts, messages, prayers, calls and love. Thank you so much.

Still Waiting for Physical Therapy

On Friday two ladies from Regional Center came by to see what Amber needed. They decided she would get one hour a week of physical therapy... now they have to find the therapist to come to the house. I hope they don't take too long. She had her second swallow session on Thursday using the E-stem, she didn't like it. Therapist said it will take some time for her to get used to having liquids in her mouth and needing to clear them down her throat. I hope this week is a better week. On Saturday we had a little scare... although it hasn't happen again we haven't heard back from GI, there was a little bit of blood that come back from her feeding tube into the venting tube. The blood was the size of your thumb nail and bright red. I will call GI on Monday to follow up, but can you believe it they still haven't called us back.

We continue to take our family Sunday walks which she loves. She looks around and takes it all in. We've been putting her on her tummy this week and I will continue that in her daily exercises. She is coming along and getting older. We have some appointments coming up in two weeks so I will find out her current weight... funny when you are young how important it is for you to gain weight but then when you get older all you want to do is loose it :-)

Thank you for all your thoughts, positive energy and prayers. Have a good week.

Talking and Moving

Amber is doing great... thank you for continuing to pray for her health, growth and strength. And of course for all your prayers for our family, we are very grateful. We praise the Lord for all these miracles he has done for Amber.

This week oral therapy was not too good. On Tuesday the therapist forgot the bottle in her office across the street so we did the same old same. On Thursday Amber had her first bottle feed. She was really interested in the milk but did not know what to do with it. Next week (current week) we will try to bottle feed while also doing the E-stem therapy. This is where she receives little shocks to help her muscles contract. We are hoping that with this, she will swallow as the milk comes from the bottle. Again, we will do this a couple of times and then re do the swallow study.

Amber is doing her baby talk more and more. She is also moving around and turning from side to side. We put toys in front of her and she tries to reach for them. She is doing really good inspite of the lack in much needed physical therapy. There should be someone coming on Friday to see when that will start. I hope it's soon.

I was unable to download a video of Amber talking but I have it on Facebook if you are interested in seeing it... I will try again here but not sure if it will take. Kyana continues to be the big helper, sweet girl while Taylor continues to be my challenge. I understand her though... I was a middle child too :-). Nothing else to report, it was a good week... I turned another year older, took Kyana and Taylor to Disneyland along with a few friends (Maria, Eddie, Maribel, Gary and Brooke) then we all met up Paul, Jill and Sarah Beth for dinner while my hubby had Amber at home. Oh and I got to sleep in, my husband is the best... Good Job Dave and Linda.

Today - August 10th

Thanks to Al, Melanie and Maria for coming over and making today so special for Amber and our family... you guys are the best. We had some delicious veggie sandwiches and yummy chocolate cake (even Kyana had this cake). YOU GUYS ROCK !!!

6 Months Old

Amber continues to do well at home. She is doing oral therapy twice a week. This coming week we are going to try 5 cc of milk with a bottle. I am very excited about that, if she does well for two weeks they will try the swallow study again. I did figure out that therapy will be for a long time, not only does she need to learn how to bottle feed, she will need to learn to eat with a spoon watery, solid foods. We take it for granted but it takes lot of cordination to eat, taste and swallow. I am happy to say she is 11 lbs 8 oz according to the scale at the cardiologist office... woohoo. Cardiology did not increase or change her lasix, he said to let her out grow her dose.

Tomorrow she turns 6 months old, crazy how time flies. She desperately needs physical therapy more than what I do with her at home. We are waiting to be evaluated by someone else on August 21st, that makes two visits by the same department and nothing. She gets really stiff and tense when she has gas or is just unhappy for whatever reason (still not sure if its brain related).

I might be late with the blog next Sunday, it's my birthday and I am taking Taylor and Kyana to Disneyland. I wish I could take Amber but I am not that brave yet. So check on Tuesday instead of Monday for an update :-). It will be an easy week, just oral therapy.

I did get some sad news that I wish you could pray with me on. Laura and Mike lost their baby boy Mikey after nine months in the hospital on Tuesday, August 4th. Mikey's journey brought his parents from Ladera Ranch to Los Angeles. Even though we live a city apart, we met miles away. It was this meeting that gave Amber the best Cardio Surgeon in the Nation, Dr. Starnes. They had been there since December, we went for the first eye surgery in March and they recommend the dr. He was not only able to fix the chamber but adjust the tricuspid valve from severe to moderate/mild at an earlier date than expected... at the time she needed it. The other doctor wanted to wait til now (6 to 9 months old 10 to 11 lbs). His funeral and service will be tomorrow at 930am, please pray for his parents and family for peace.

I continue to be so grateful for all your positive energy, prayers and advice... God is listen and Amber continues to thrive at home.

Sunday, 08/02/09 - She is 10 lbs 14 oz

What a week... I started with just two little appointments that turned into a full week. Monday was quiet but then the week really got started. On Tuesday and Thursday Amber started E-stem therapy for swallowing, I am excited to introduce breastmilk next week. We are just dipping her pacifier in it but it's something. She doesn't like having the little leads on her neck but that's what helps stimulate her muscles on her throat so we go. On Monday I got a call from the Endocrinologist for a Wednesday appointment. The appointment was at 830am, they started at 9am. They had to start an IV to draw blood for testing and for medicine administration. The blood had to be drawn every hour for three hours. As they were poking her, I said my poor baby she is getting poked tomorrow for her first set of vaccines. I am so glad that God put that thought in my head. They said, oh no you should not be doing any vaccines until we get results from this test. If her adrinal gland is off and she needs hormonal supplements she will not be able to handle the vaccine shots, she could be back in the hospital. They decided to do the labs in house to get the results faster for me, and after 4 hours there we went home.

On Thursday, at her pediatrician's office we hadn't heard any of the lab results so we decided to postpone the vaccines... as I was walking out the room, I got the call. Thank you Lord, all is well with her hormones no supplements needed... now little baby got poked again, 3 shots / 5 vaccines. Dr. Comulada said to do Tylenol for 24 hours to avoid any problems.

On Saturday, we had another eye appointment, this time it was in his Pasadena office not at CHLA. It was so much better, no waiting, no crowds, no parking problems, and best of all lots of hands to help... it was a family trip. Dr. Song says her eyes are great, continue the patch on left eye and drops on right eye until we see him again in two months. The surgery to replace the lenses in her eyes would more than likely happen when she is 9 years old.

While we were in Pasadena, now with a few vaccines in her, we decided to have lunch at the Old Spaghetti Factory... what Weight Watchers... she was pretty good with one diaper change and one little fuzzy time from wanting to sleep and then slept the whole time we were there.

I am sad to say I am running out of breastmilk so the GI doctor said to start mixing formula with breastmilk until is just formula. This is causing her to poop less so we will see where we go from here. Please no constipation...

We had another family walk, she is loving the outdoors, should I be worried? She is going to be my party girl, hanging out with everyone and out all the time.

This week we continue swallow therapy twice a week and an appointment with cardiology on Friday. Oh and Amber made it to church on Saturday too, Pastor John gave her a blessing. It was such a great feeling to be able to do that. I can't wait for her baptism. As always, thank you for all your prayers and positive thoughts... I pray that Amber continues to grow, gets rid of the gasses, starts to swallow so she can eat from her mouth, that the genetics doctor have some answers, that neurology can tell us more about her brain and that regional center can get someone to start her physical therapy soon.

4 Weeks At Home

Today we went for a walk outside together as a family. It's so nice to see everyone and feel good to be outside of hospitals. Amber continues to be well. She has lots of gas, not sure if it's because she has a MIC-KEY button or because we started using probiotics (they both happen on the same day), she is crying two to three times a day trying to pass it for about 20 minutes, its so sad.

This past week we saw the Endocrinologist, someone from his office will call to make another appointment for a special stress test that takes 3 hours. This will tell us if Amber will need hormone supplements or not. We also went to our first swallow therapy but didn't do much work, someone from their office will call to make a schedule for the E-Stem therapy. It will be twice a week and after a while we will redo the swallow study. It seems that I go to appointmets, wait to see a doctor who tells me I need to wait to see someone else. Anyways the important part is that she is home and growing... she is 10 lbs 2 oz, drinking 85 cc every 3 hours. I took inventory of the breastmilk the other day, I only have enough for about one more month :-(

This week we have our first set of vaccines and another follow up on her eyes, thank you for all your prayers, thoughts and positive energy. A special thank you to Moms Club for their assistance through the Mother2Mother fund, we appreciate the way they stepped up to give us a hand. I continue to thank God for Amber, for my family, and for all of you our friends. We pray that each of you are blessed each day, how we are blessed.

New Family Picture

3 Weeks Later.

As Amber naps, Kyana & Taylor wrestle in the living room and Kurt & I think how grateful we are to be home together. I know you all want to know how Amber is doing but know that life is hectic so you wait for the blog... I will do my best to write new posting every Sunday, even if it's just a few pictures so you can check on Monday. You can always email, call or text but I don't promise I will always be able to respond right away.

From head to toe, this is how Amber is doing:

Neurology - we have an appointment in September, for now we just need to keep up with her physical therapy and see how being at home helps her. There is nothing we can do, just wait.

Opthalmology - Went to LA, her right eye has scar tissue so we need to add dialation drops twice a day and put a patch on her left eye for an hour a day to help exersice the right eye. We are going to try to keep our follow up appointments in Orange with a different doctor until it's time for her lense replacement when she is older. They might prescribe contact lenses should know more soon.

ENT (Ear, Nose and Throat) - We have to keep an eye on her left ear because it might collect fluid, have a follow up appointment in September, but she can hear out of both. Her nose is good but due to the narrow right nostral passage way we also need to keep an eye on it. Swallow therapy was due to start last week, therapist had to go out of town so we are starting on Tuesday this week.

Cardiology - Will keep seeing her once a month. He just switched her medications (decreased) and did some blood work. Potassium seemed high and gluten was very, very low but they felt it was not conclusive since gluten was so low she should have been in a sleep coma. Went in for a quick EKG all is well, next appointment in August.

Endocrinology - Appointment on Monday will probably do more blood work and hopefully find out she doesn't need any hormonal supplements.

GI (Gastro Intestinal) - change her G-tube to a MIC-KEY button, much easier for her to be held without the g-tube hanging down. We plug in the feeding tube into MIC-KEY then unplug when done. She is a little more gassy but we are dealing with it. Her anus still has what they call a "fisher" which is causing her to bleed or have blood in her diapers. It doesn't happen often, we are putting an ointment as a barrier to help it heal. Dr increased her feeding from 75cc to 85cc so from a little over 2 ounces to almost 3 ounces. She eats every 3 hours, no matter what... I forgot how many diapers baby use in a day.

Pediatrician - She will get her first set of vaccines at the end of July.

We had our first family walk on Friday night, she was awake the whole time looking around and taking in all that refresh RSM air. Thank you for all your prayers and good thoughts.

Almost 5 Months

Amber will be 5 months tomorrow (07/10) we have a cardiology appointment and I will update with her current weight. She is doing well except for a minor blood in her stool that could be cause by strain from pooping. On Sunday she had little red blood spots in her morning poopie diaper but nothing the rest of the day, then same on Monday and Tuesday. But on Wednesday it was in all her poopie diapers, needless, to say without getting too disgusting she’s ok just a little cut in her bottom. It should go away on it’s own but we will discuss it with GI on Monday. Today we saw the eye doctor. All is going well with her sight. Her right eye is a little lazy so we will be doing a patch over her left eye one hour a day to make it work and we are back to eye drops twice a day. Overall she is doing well and the girls just love her. Kurt and I continue to get little sleep. Kyana will start Vacation Bible School on Monday, while Taylor will start her summer program at the Montessori school to prepare her for Kindergarten in September. My mom will continue to come on Monday and/or Tuesday while my in-laws go home on Monday for a much needed break from all their wonderful help. It will be interesting to see how I handle life at home with three kids by myself during the day.

Thank you for keeping Amber in your prayers and in your hearts, please continue to pray for things to reveal themselves as we learn more about her brain, her physical situation (g-tube for feeding, eye sight, blood in poop, oral therapy and physical therapy) and of course her heart. Also keep these babies in your prayers too: Molly, who had 1 of 3 heart surgeries and it home trying to gain weight. Graciella, who had her heart surgery last week, was extubated, is doing well and has down syndrome. Mikey, whose mom had to go back to work after taking 6 months off to take care of him, he still needs 2 more heart surgeries and has liver problems. Milagros, who just had her 2nd heart surgery and should be going home soon to wait for her 3rd surgery. I hope you enjoy the updated pics…take care and God bless you.

One Full Week

We still have not beaten our record nine days at home but so far all is going well. Amber is enjoying being home, playing with the girls but most of all being carried. I can't stop holding her every chance I get but I have to wrestle her from my mom or mother-in-law because they like to hold her too. Not to mention Kyana and Taylor are always asking to hold her too.

She eats via g-tube 75 cc every 3 hours which means a little over 2 oz every 3 hrs. She gets some type of medicine each time she eats too (Lasix, Diuril, Sodium Chloride, Multivitamin, Prevacid and Simenthicone - meds to release fluid, replenish electrolytes and prevent gas/acid). I take her for a little sun out in the backyard and for her doctors’ appointments. Her first set of vaccines are scheduled for the end of July.

We have to follow up with Neurology, Geneticist, Ear/Nose/Throat specialist, Endocrinologist, Cardiologist, regular Pediatrician, Gastro Intestinal specialist and Opthalmologist. Then physical therapy and oral therapy… I have to take a breath here, oh wait that would be it :-). The Cardiac Surgeon has signed off on her which is one less person I need to follow up with unless her cardiologist feels we need to for some reason. Well as promised I hope you enjoyed the updated pictures.

Little Sleep... little time... good problem to have

So I've been told... what's going on? We don't want to call you and bother you but we don't know how things are going. I am happy to say that little sleep and little time are good problems to have. It means there's a baby at home :-)

She is doing well, we are still trying to learn how to make her comfortable and keep her happy. For the most part she is but every now and then she has her moments of being restless. I am sure it's totally normal baby stuff but for us is a little uncertain. So we are trying to relax and let it run it's course, she settles, we settle and everyone sleeps... or what I call nap because we are up again to feed, change, etc... I will add more soon and include some pictures.

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.

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