Wednesday, August 31, 2011

Day 24: Analise goes to the pediatrician

Today, Analise had her first outpatient pediatric appointment.  The doctor she saw today did not know anything about Arthrogryposis or Amyoplasia, other than one mention of it during medical school!!  Erik and Dawn know far more about it than she does!  This pediatrician referred Analise to another doctor in Fontana.  Erik and Dawn have an appointment next Thursday with a high risk neonatologist.  Analise will also have another appointment with a geneticist.

Basically, the only things that were done today at the doctor's appointment were weighing and measuring Analise:  7 lbs 2 oz (just slightly less than when she was discharged from the hospital), and 20.25  inches.  The pediatrician told Erik and Dawn that  they may need to add formula to the breast milk feedings if Analise does not gain weight by next week.

Tomorrow is the appointment with the surgeon who did the first surgery, to assess Analise's progress and recovery after surgery.

On the family and friends front:

Erik's stepsisters, Amanda and Ashley, and Amanda's husband Chris, are planning a day (lunch and dinner) at BJ's in Corona, where a portion of the sales will given by BJ's to Erik and Dawn.  We are thinking it may be held on October 11, but we will let you guys know for sure when we have the exact date.
Thank you Amanda, Chris, and Ashley!!

Erik and Dawn's friend, Kim Tyler, is also organizing a night at Chick-fil-A in Corona, where a portion of the sales will be given by Chick-fil-A to Erik and Dawn.  Erik has had two of Kim's children as his students.  The date for this is also not set, but Kim is shooting for September 21st.  Again, we will let you know when we have a sure date.  For both these events you will need a flyer to present at the time you order, which we will make available to you all, so that Erik and Dawn will be given credit for your purchase.
Thank you Kim!!

Erik's cousin, Jessy, found a breathing/motion monitor for Analise through a friend, and now Erik and Dawn will be able to try it out and hopefully sleep a little better at night, and I think we will all also sleep better.
Thank you Jessy!!

Zoara, also Erik's cousin, after much searching, found a great website where they have clothes for preemies and larger babies that are in the hospital, that are really easy to put on and take off, AND they are made in the USA!!!  Not only are they functional, but they are also really cute.  I added the link on the side of the blog titled: "Links".  Zoara has also helped us tremendously with the blog, making the picture collages, including the new awesome picture on the top of our blog.
Thank you Zoara!!

Abuela Marta (Erik's 87 year old grandmother) got her Pertussis vaccine yesterday (something she was really afraid to doafter she obtained the ok from her doctor.  The first thing she asked when she told us she had the shot was "So, when do I get to see her??" ;-)  Abuela was able to visit with our Sweet Analise today.  She held her, sang to her, prayed over her, and just loved her up.
Thank you Abuela for getting the shot you feared so much!!

There are sooo many of you to thank that are not mentioned here, these are just the most recent examples!!!

Erik and Dawn are so blessed to have such a wonderful circle of family and friends that are being so supportive with their research, prayers, gifts, fund raising, getting their Pertussis shots, words of encouragement, anything they can do to take a little of the weight off Erik and Dawn during this challenging time.
THANK YOU GOD!!

PS: We know the videos from the previous post are long and there really isn't much to look at during the videos, so if you still want to learn from the videos and can't find the time to sit in front of the computer, you could just listen to them through your smart phone in your car on your way to work.  I did that today while I was in the car with Abuela, they really have great information.
Abuela and Analise
Dreamin'  I'm a ballerina...

Day 24: Encouraging and informative videos with explanations about Arthrogryposis and Amyoplasia


Understanding Arthrogryposis Multiplex Congenita from margaret chaidez on Vimeo.

Reminder: You can pause the background music on the right,
 "Analise's Playlist" in order to be able to listen to the videos.

Erik sent these very informative and encouraging videos to us after midnight last night.  Dawn has befriended Melanie, Mikaela's mom, through Facebook and the AMC support group.  Melanie also has a blog about her daughter's journey with Arthrogryposis, which is where Erik found these videos.   http://www.mikaelajane.com/index.html

The video above is about 36 minutes long, but the first third of the video gives a great explanation about Arthrogryposis. The video is divided into 3 segments: Introduction to Arthrogryposis; Philosophy of Care and finally; Treatment Options for Arthrogryposis. The speaker on this video is Dr. Harold van Bosse, a pediatric orthopedic surgeon, lower limb specialist,  from Shriners Hospital in Philadelphia.

The video below is with Dr. Judith Hall (Dr. Tiller-the geneticist-talked to Erik and Dawn about this doctor and described her as the leading expert in amyoplasia/arthrogryposis).  Dr. Hall gives great explanations and general answers about arthrogryposis.  This video is about 33 minutes long.

One of the suggestions Dr. Hall gives to parents of children with Arthrogryposis, is to take lots of notes and lots of pictures...Erik and Dawn are definitely on the right track!!



Mikaela meets Dr. Hall from Murad Ainuddin on Vimeo.




Tuesday, August 30, 2011

Day 22-More visitors, video, and more pictures

Mommy and Daddy have your hand

This is the post for Day 22: Monday, August 29th.
(When you watch the video, you can pause the music on the top right of the page)

Erik is still calling on a daily basis trying to schedule the orthopedic appointment, but nothing still.  They have the appointment with the pediatrician on Wednesday and with the surgeon on Thursday.  Erik and Dawn will stop by the orthopedic surgeon's office while they are in Fontana, and will also contact the neonatologist to see if anything can be done to schedule the orthopedic surgeon's evaluation soon!!

Erik and Dawn are applying with Early Start, Regional Center, CCS, MediCal, Social Security, Shriner's, and probably more.  Many agency's acceptance to their program depends on another agency's approval, so they will continue to follow up with all of them.

Shriners already sent a letter requesting Erik and Dawn's consent, and hopefully they will contact Erik and Dawn soon to schedule an appointment.  The next clinic appointments for the Arthrogryposis clinic at the Shriners Hospital in Los Angeles will be on September 15th, the third Thursday of the month.

Erik said he took pictures last night (below) of Analise sleeping and he said he wonders if this is how she was in the womb.  Maybe her ams were pinned by her legs or behind her as her legs were up??  Still many unanswered questions!?!?

Uncle Jim (Dawn's brother) and Kevin (Erik's cousin), visited Analise yesterday, Monday, August 29th.


                                                   Analise after her second bath at home


Kevin 
Uncle Jim
This is how Analise likes to sleep!



Day 23: Message from Grandpa Rich to his work Family along with a reply from "a follower" of Analise's blog ;-)

Here is a message that Grandpa Rich sent to his "work family", along with a reply Grandpa Rich received from a "follower" of Analise's blog.  Is Analise allowed to date yet?  ;-)


"A Note from Analise

Hi everyone,

I am finally home!! Yeah!!!  My room is beautiful although I don’t get to sleep in it yet.  For some reason my parents want me in their room.  Hopefully I am done with hospitals for a little while!  My mommy and daddy and I thank you all for your prayers and support!  I could really feel them every day and they sustained me when I was hooked up to a bunch of machines (none of them IPods)!! 
Just to make my parents feel better that my surgeries were a success, I am pooping a lot and often.  Well, that’s what they wanted, isn’t it?
This is a photo of me from my blog, although I don’t know what a blog is!?   I thought it had something to do with my pooping but I guess I was wrong!

Love and thanks to you all,

Analise Rose"
Here is the reply from
James, AKA The Viking, or Norwegian God:

"Hi Analise,

You are a real looker.  Want to go out sometime?  I’ve included my own picture too in case looks matter to you.  By the way, I’m glad you’re feeling better, I know my mom and everyone else was really worried about you. 

James, AKA The Viking, or Norwegian God" 

AKA The Viking, or Norwegian God



Sunday, August 28, 2011

Day 21: Getting better acquainted with Analise

Erik and Dawn are figuring out ways to adapt the activities that most of us take for granted with a newborn, such as dressing, diaper changing, bathing, etc, but are more challenging with a baby with Amyoplasia/Arthrogryposis.

Today, for example, they have figured out a way to put on Analise's clothes with more ease.  We knew they would be creative and find a way to make it work!!

Just fyi, our next post will probably not be until Wednesday, after Analise's first outpatient doctor appointment.



Awwww!!!

Saturday, August 27, 2011

Day 20: Analise gets visitors and an update on Erik and Dawn's "new normal"

Today, Analise had several visitors that were very excited to see her:  Great Grandma Thelma (Dawn's Grandmother) and her husband Leon , Grandpa Ed and Grandma Sandy (Erik's father and step-mother), Isabela (Analise's cousin), Grandpa Richard, and me.   All of us have had our Pertussis vaccines and we were all healthy, yeah!!! (A message from Erik: Thank you for all of the people running out and getting the shots.  Kaiser does it for free for their patients, CVS was expensive ($50), most other places will do it for your co-pay or free through your insurance.)

Today we got a small sample of how Erik, Dawn, and Kaley are feeling these days, and yes...Kaley too, she is being an amazing big sister!!!

Erik and Dawn are still a little nervous about having Analise not being observed round the clock since she has a tendency to hold her breath once in a while and they also want to ensure her arms are not in a position that will be harmful or painful to her.

Erik and Dawn's friends, Keith and Lisa gave them some advice on how they took care of their premature twins, Kash and Emma, who also spent weeks in the NICU, and coincidentally were born on the same day as Analise was born, but on 8/8/08!!  They also have a great blog http://tarterbabies.blogspot.com, in case you are interested in checking it out.

Here is a small sample of what their days have looked like since they have been home and what their lives will look like for the next weeks, months, ?? :
  • Erik, Dawn, and Kaley take turns throughout the night, making sure one of them is awake with Analise at all times, as well as with the feedings every 3 hours, exercising  her every 6 hours, and making sure her splints are 3 hours on and 3 hours off.  
  • In addition to doing the usual care-taking of a newborn, we saw how difficult it is to put on a shirt, change a diaper, burp, anything having to do with caring for Analise, because of her inability to move her arms and the lack of range of motion. It almost takes 5 hands to do some things!! We were ready to run to the store and buy a stack of snap on t-shirts for Analise, but Erik and Dawn told us that Dawn's sister, Victoria, had already done so!!  Thank you Victoria!!  Anything to make it easier on Erik and Dawn and also not hurt our Sweet Analise!!
  • So much to do and so hard to remember it all!! In order to keep track of everything, they are keeping a log of when they did what, including when they changed diapers, when Analise sleeps, etc!!  Very organized!!
  • Erik and Dawn are becoming pros at doing Analise's range of motion exercises, so much so that Erik thought he would even try his therapy on his Dad's shoulder this afternoon.  How did he do, Grandpa?  Erik may have a new career in his future  ;-)
    In addition to all this, they are now also having to coordinate Analise's care, call and complain about appointments not scheduled, apply for services for Analise from several agencies, and keep everything organized and on schedule.  And, in addition to all that, there's Kaley, Kyle, and Kassandra's school and soccer schedule, and...Erik will need to go back to work in a couple of weeks!!

    Now that Analise is home and they are beginning their life, as Erik describes it, "their new normal", it is very clear that they will continue to need our prayers and our support more than ever!!

    This afternoon, Erik rested his head for a minute and ended up falling asleep for a couple of hours, but  poor Dawn never was able to nap today.  We pray she is able to get some rest tonight.   


    Great Grandma Thelma and Great Grandpa Leon

    Grandma Sandy and Grandpa Ed

    Kassandra took this picture of her baby sister,
    she is becoming quite a little photographer!!
    Isabela holding her new cousin
    Abuelita and Grandpa Richard



    Friday, August 26, 2011

    Day 19: Family pictures

    Here are pictures with Kaley, Kyle, Kassandra, and Analise at home
     and the first official family picture with Analise.


    They all look so happy to finally be 
    with their little sister, don't they?!?!
    The three "K"s  are being very helpful and love to spend every minute with Analise!!








    Kaley with Analise


    Kyle with Analise
         Kassandra with Analise

    Day 19: Update from Erik

    Message from Erik:

    "Analise did great last night. Slept on and off til 3 and then from 330-530 and then from 630 to 915. Dawn and I both took turns waking up. And we survived, yeahhhh! She got a bath this morning and now she's asleep. 

    We are realizing its very hard to do anything by yourself with her arms not working. Teamwork will be key. 

    So happy Kaley, Kyle, and Kassandra are coming tonight to help out and hang out with their baby sister. 

    I called about the ortho appt and they have to schedule it. The doctor is very booked so it could be long but I insisted it be very soon. We've waited a long time. 

    We have a phone appt with social security today to discuss Analise, hopefully that goes well. 

    Analise still doesn't like exercises. We do them every 6 hours but she cries every time, especially with her right shoulder. Slow, passive ROM (Range of Motion) is what the OT said is best for her and her future movement. 

    Everyone always asks about Dawn. She is doing great physically, and much better emotionally. She is an exceptional mom and is completely devoted to Analise and her future success. 

    I am a very lucky man, husband, and dad. And as I always say, dont worry about me, I am doing great too. I have gained a few pounds, but hopefully I will lose it soon chasing Analise. More pics to come. Much love from Erik, Dawn, Kaley, Kyle, Kassandra, and Analise"

    Let's pray that our Sweet Analise, Erik, and Dawn are able to easily have access to all resources available for them!!

    We are also very blessed to have such an
    awesome son and daughter-in-law!!!
    Sleeping tight!!

    Thursday, August 25, 2011

    Day 18: Finally home!!! A note from Erik and Dawn:

    Here is a message from Erik and Dawn:

    "Finally home. Dawn fed Analise, diaper changed, awake for an hour, and finally asleep. But only for a little bit until the next feeding. 


    Took two and a half hours to get home but no crying the entire way. Feels weird holding her with no cords, cables, and IV's but I think we can get used to it. We will have a new routine here in no time. 


    What time do the nurses come tonight again? 


    We are a little nervous, actually a lot nervous, but that will subside.  Tonight we won't sleep but that's ok too. 


    We want to thank everyone for all of their love and support. It was very hard for all of us but we are very excited to get over all that drama and start living our new exciting life with Analise, whatever that shall bring. 


    We are very grateful for our loving family and friends. We love you very much and Analise can't wait to give back all of that love.
    Thanks again,
    Love,
    Erik, Dawn, Kaley, Kyle, Kassandra, and Analise"
    Ahhhhh, I'm home!!

    Day 18: On my way home!!

    Erik and Dawn said "We are very nervous, but we are going home".
    My last picture in the NICU!!

    This is comfy...and pink!!

    Hello world...Here I come!!!
    I can't wait to see my room...more pink!!

    Day 18: It is confirmed, this is my last day in the NICU, we are going home!!

    Analise has not seen the doctor yet, but most likely she will be discharged in a couple of hours.

    Analise passed her car seat test, yeahhhh!!

    Erik and Dawn are all packed and they cleaned up their room at the Ronald McDonald house,  ready to go home.

    Breastfeeding is going a lot better with each feeding!!


    Thank you all for your prayers, and please continue to pray for 
    Erik, Dawn, Kaley, Kyle, Kassandra, and our Sweet Analise...
     they have a long journey ahead of them, and we will continue to rejoice in the small miracles each day!!

    I think Analise KNOWS she is going home ;-)




    Wednesday, August 24, 2011

    Day 17: I may be going home tomorrow!!

    I may be going home tomorrow, yeah!!
    Do these wrist splints come in pink?????
    Erik just said that Analise may be going home tomorrow if all goes well tonight, yeahhhh!

    Analise will have a car seat test tonight, during which they check her vitals in the car seat for 90 minutes.  (Erik said they do that with all surgery and premature babies.)

    Then...final assessments tomorrow, paperwork, and then they will be home!!!!

    Dawn says Analise hates breastfeeding, but she is still going to keep trying.

    Erik and Dawn plan on spending some time alone at home with Analise Thursday and Friday, then Friday night Kaley, Kyle and Kassandra will be home with their little sister, and will be able to spend the rest of the weekend with her.  If all continues to go well, maybe they can have some visitors over the weekend.

    Erik and Dawn were told by the doctors that ANYONE who is going to be around Analise (or any newborn) needs to have the whooping cough vaccine (Tdap:  CVS and other pharmacies, doctor's offices, or urgent care can give them).

    Erik and Dawn also want to make sure that anyone who visits Analise is not sick or has not been around anyone who is sick before they visit (cold symptoms, sneezing, coughing, stomach symptoms, nausea, vomiting, diarrhea, flu symptoms, or any other illness).

    If you are sick or have been around someone who has been sick, please wait until you are healthy plus at least a week before visiting.

    Analise has the added challenge of being medically fragile at this time, and will need to remain healthy should she need any additional surgeries.  

    Erik and Dawn are making these requests and will also be having everyone wash their hands, etc,  FOR ANALISE'S PROTECTION. After all, she only had surgery 6 days ago and we don't want her sick again.

    We know everyone will understand.  Thanks!!

    Analise can't wait to meet all of you!!!

    Praise God for more answers to prayers!!!


    Day 17: Good Morning!! More good news!!

    The surgeons said our Sweet Analise looks GREAT!!  They spoke with Dr. Kessler (orthopedic surgeon) and he told them she looked good too.


    Analise is eating 60 ml (2 oz.) every 3 hours with no problems.


    Analise is sleeping, eating, and pooping with minimal crying, just like a typical baby.


    The doctors said that there is no reason Analise can't go home very soon.  Praise God!!


    Erik and Dawn were finally able to put on a little dress on Analise!!


    Pretty in Pink!!!

    Such a sweet angel!!

    Message from Erik's Aunt Maria:

    Here is a very touching and encouraging message from Erik's Aunt Maria.  We are so grateful to have such an amazing family (and of course, our friends are also part of our family!!):



    Thank you for keeping us posted on Analise’s progress.  God is doing a great thing in your lives.  He is using her as an instrument of His grace and mercy for all to see.  She is an angel sent from heaven to show forth the praises of God.  

    Continue to look for God’s little miracles everyday.  We tend to think miracles are only big events but they are the small everyday occurrences in which He chooses to be anonymous.  
    You guys are all keeping a positive faith centered attitude and that is great.  God says without faith it is impossible to please Him. We must believe that He is and that He is a rewarder of those who diligently seek Him (Hebrews 11:6). 
    You are all seeking Him that is why He is rewarding you with answered prayers!

    Love you!

    Tuesday, August 23, 2011

    Day 16: I had a great day today!! Good Night!!

    Again, sorry for so many pictures today, 
    but it has just been such an awesome day!!
    Just got a bath and my hair was frizzy!!
    Good thing I had this cute hat that Abuela made for me!!
    Oops, I scared Mommy with my burp!!



    Day 16: Y'all must have been praying for that Orthopedic evaluation . . .

    Well, we know that you all must have been praying that Our Sweet Analise would be evaluated by the orthopedic surgeon before she went home!!   Even though Erik and Dawn were told that Analise would probably not be assessed by an orthopedic surgeon while she was in the hospital...guess what??...
    Dr. Kessler, the pediatric orthopedic surgeon assessed Analise today... Thank you God for hearing our prayers!!!

    Dr. Kessler stated that he only sees a couple of cases of Arthrogryposis per year, but he does not think that Analise has a severe case.  He was encouraged by Analise's ability to reach her head with her arms (with assistance).  He told Erik and Dawn that if Analise was his patient, he would wait on any casting or more invasive procedures for about a month, to see how her limbs continued to develop.  Dr. Kessler said that Analise can continue with very slow and gentle range of motion exercises.  He recommended that Analise sees the orthopedic surgeon in Fontana, who has an interest and more experience with children with amyoplasia and arthrogryposis, once she is discharged.

    Erik and Dawn are also in the process of applying with Shriner's Hospital, so that Analise may be evaluated there as well, since the doctors at Shiner's Hospital may have more experience and are familiar with the latest treatment for Amyoplasia and Athrogryposis.

    The nasogastric tube was removed today.  Analise is up to 46 ml's of breast milk, drinking it from a bottle.  She spit up a little bit this morning, but the doctor's are not concerned.  Analise has been having the normal, loose, breast milk stools.

    Analise has been awake most of the day and is crying less and less.  The doctors mentioned the possibility of discharging Analise soon.

    Sorry about all the pictures today, but we are soooo happy about today's events!!
    Since I can't suck my thumb, I love sucking my lower lip!!
    Hey Papa, look at me, I'm down here!!
    Doing my exercises, bending my elbows and crossing my arms...
    You can tell I am not a big fan of these exercises!!  

    Mommy can feed me again, I'm happy!!                                 Hey look how I can raise my legs!!



    Did I just hear I may be going home soon!?!?



    Monday, August 22, 2011

    Day 15: Finally, real food again!!

    Today, the oxygen is off and the IV on our Sweet Analise's left hand is gone.

    There have been NO breathing episodes since the breathing tube was removed!!

    Today, Analise was started on the breast milk again, and it is gradually increasing by 6 ml every 3 hours until she reaches her goal of 60 ml.  By 9pm tonight she will be getting 22 ml.  Analise weighs 7 lbs. 5 oz. today.

    Erik and Dawn are still making their daily requests for the orthopedic evaluation before Analise is discharged.  Our prayers continue that their request be granted and that Analise is properly assessed by the orthopedic surgeon before she goes home.

    Erik and Dawn were able to hold their Sweet Analise today.
    Ahhhh!!  My papa can hold me, now I can relax!!

    Day 15: Good morning, I am 2 weeks old today!!

    I am finally two weeks old today and Mommy gets to hold me again.  
    No more oxygen either, I am breathing on my own!!
    It feels so good to be in Mommy's arms again!!

    Now that I don't have the oxygen anymore, those red
    marks on my face from the tape will soon go away...
    just one more tube to go!!

    Sunday, August 21, 2011

    Day 14-Off the ventilator, finally!!

    Our Sweet Analise was finally taken off the ventilator today!!

    She is currently receiving oxygen through the nasal cannula, but the respiratory therapist stated that they will try to remove that as well tonight. She also still has the nasogastric tube.

    Analise has pooped numerous times today, a great sign that the plumbing is working properly. The surgeon told Erik and Dawn that Analise is recovering nicely from surgery, thank you God!!

    If Analise continues to do well tonight, they may be able to start giving her some breastmilk tomorrow, and gradually increase her feedings over the next several days.

    One thing we forgot to mention is that Analise passed her hearing test with flying colors a few days ago, but we already knew she could hear well by the way she responds to Erik and Dawn's voice, it is a beautiful thing to watch!!

    Analise was so excited to see Mommy and Daddy tonight, making cooing sounds and staring intently into their eyes.

    Still no orthopedic evaluation, even though Erik and Dawn request it on a daily basis, but Erik and Dawn continue with the arm and leg exercises every six hours and the wrist splints are on 3 hours and off 3 hours throughout the day.

    At church today we were once again reminded that God always meets you where you are and we would like to share a few thoughts from today's message that really spoke to us:

    • God is a God of daily miracles.
    • Our plans need to yield to His plans.
    • We ask: Why me? But we are not changed by easy lives, but by difficult ones.
    • God takes on our problems when we set aside our pride and our doubts.
    Day 14: Looking up at Mommy and Daddy: So glad you are here for me!!

    Saturday, August 20, 2011

    Day 13-Wooo Hooo, Pooo!!!

    Who gets excited over a baby pooping...WE DO!!!


    Analise pooped today, that probably means that the surgery was successful!!!
    And, as Erik's Tia, Carmen said:
    "Wooo Hooo, Pooo!!"  ;-)

    Analise slept most of the day today, but every time she would hear Erik and Dawn's voice she would start to wake up.   She is still on the ventilator and SHE DOES NOT LIKE IT!!!

    Day 13: Did I just hear my Mommy and Daddy???
    Analise is unable to cry with the ventilator, so Erik and Dawn don't want to agitate her with their presence and they are going to let her rest after seeing her one more time tonight.  Analise needs a lot of rest to help her recuperate from surgery.

    Hopefully tomorrow our Sweet Analise will be off the ventilator!!!

    Let's pray that Analise will be able to breathe on her own soon, we want to hear her voice!!!

    Comment from Erik's Aunt Becky

    Erik's Aunt Becky requested I post this on her behalf:
    To my sweet little niece,
    From God's Word, in Psalm 139: 17,18.....
         "How precious are Your thoughts to me, O God!
          How great is the sum of them! If I should count them, 
          they would be more in number than the sand; 
          When I awake, I am still with You."
    hugs & kisses, auntie Becky

    Day 13-Analise's two bedrooms

    FYI: You can click on the picture for a close-up:



    My room at the hospital:  Really cool electronics, but I would rather be home!!





    My room at home is small, but look how cute my Mommy and Daddy
    have decorated it, mostly with gifts from family and friends!!

    The cute hanging letter "A" clip holders were made by Erik's cousins,
    Zoara and Jessy

    "A" is for Analise, lovingly created by Erik's cousin, Jenni Ortiz

    Day 13-Good morning!

    First of all, I wanted to let you all know that I changed the settings on the blog so that you don't have to be registered to post a comment.  Maybe that is what was causing so many problems for some of you.  Sorry, I'm new at this!

    Erik and Dawn just called and said that while they were exercising Analise this morning, she opened her eyes a little bit.

    Day 13-Slowly waking up...What happened to my hair?????
    Erik and Dawn were told that today they may take away the large dressing from surgery, and they are also hopeful that the breathing tube is also removed.

    Friday, August 19, 2011

    Day 12 update

    Today was a day of rest and recovery for our Sweet Analise and Mommy and Daddy.

    I loved a comment made to me today by my sister-in-law Anaivett regarding the nurses' comments about Analise being "feisty":
    "Feisty is good, lots of feisty women in the family." ;-)
    Auntie Monika (Erik's sister and our daughter) also said that "feistiness will help Analise get through this!!"

    Erik and Dawn decided to go to the Ronald McDonald House this afternoon for a few hours to take a well deserved nap, since Analise was still sleeping and they could not hold her or touch her.

    Many of you are worried that Analise is not eating or receiving nutrients.  Erik wants you all to know that she is being fed through her IV with protein, glucose, electrolytes, and more.  Does she look like she is starving ;-) ? See today's picture.

    Erik and Dawn were told that Analise will start to wake up tomorrow and may start crying because, even though she is receiving nutrition, she does have not Mommy's milk in her stomach.

    Analise is still intubated and they may start weaning her off the respirator tomorrow.  The respiratory therapist, whose grandfather was Cuban (according to Erik), was very kind to Erik and Dawn and explained that they want to wean Analise off the respirator slowly to allow her to breathe on her own safely.

    Day 12: When I wake up, I am going to be hungry!!
    Please take the time to read Great Grandpa Joe's comments below.  He does a beautiful job describing all of our love for Analise.  Also, we were unaware of the meaning of Analise's name, but it fits her perfectly!!!

    Comment from Great Grandpa Joe

    Dawn's Grandpa Joe requested we post this for him today:

    "This was great news to wake up to this morning!  I tried to post on Sweet Analise's blog but I guess I am not smart enough to do it.  I did enjoy reading all of the replies.

    Also, I found out that Kaiser's Children's Hospital in L.A. is one of the finest and highest regarded hospitals in the U.S.  She is in great hands.
    As for the scars. Scars fade, Love is forever. Analise, with the love and prayers of her family and friends and from what I have seen on the internet, extended honorary family will come through this stronger than ever.  There will be bumps in the road for sure but rest assured there will be much love and support to get through them.  You named her well.  "Graced with God's Bounty" and she will be.  She already has been with parents like you.
    I hope to see you and Analise next week after she has had time to recover.
    Lots of Love.
    Great Grandpa Joe
    P.S.  I'll figure out how to use the blog.  Christine is going to help this old man."

    Day 12: Per the nurses: "Erik and Dawn have a feisty little girl on their hands!!"

    Erik said that the nurses told him this morning that Analise did well during the night and only needed medication a couple of times, which they said was a good thing.  They told Erik and Dawn that they have a "feisty little girl" on their hands and that she was a little bit agitated only a couple of times during the night.  She remains intubated and will hopefully have the breathing tube removed today, if all continues to go well.

    We love reading the comments being posted on the blog and on Facebook as well as all your emails and texts.  Hearing from you guys is heart warming, and we can feel everyone's love and prayers.  We especially love the stories of how some of you have gone through similar situations and the powerful role that prayer and faith played in your lives.

    Thursday, August 18, 2011

    Day 11-Praise God!! Analise came through the surgery well!!

    Thank you Lord for hearing our prayers!! Longest 2.5 hours ever!!!

    After surgery, we spoke with the resident, who had also been present during the first surgery. He said that surgery went well and Analise tolerated the anesthesia with no complications. Apparently, part of the ascending colon had been removed during the first surgery and during today's surgery, the rest of the ascending colon (about 2 inches) was removed, the appendix was removed, and only about 2 inches from the end of the small intestine was removed. He stated that this will not affect Analise's ability to absorb nutrients or poop ;-). She will remain intubated until tomorrow, will be on antibiotics to prevent infection, and ANALISE NO LONGER HAS A COLOSTOMY BAG!!! One more thing, Analise will never have appendicitis!!!   ;-)

    The resident said that the acute period will be during the first week, during which Analise will be observed very closely in the NICU. He also stated the scar on her stomach is about 2-3 inches long.

    Because surgery was delayed so many times, Analise had an abundance of prayers stored up for her surgery. In addition to that, we don't know about you guys, but we consumed about 10,000 calories while we waited!!!

    Thank you all for hanging in there today during all the delays and continuing with your prayers and commitment to Analise's well being and recovery!!!

    7:55-they just took Sweet Analise into surgery

    They just took our Sweet Analise into surgery. Please continue to pray for her. Since surgery has been delayed so long, Analise has gotten a lot of extra prayers...yeahhh!!!

    Still waiting, but..

    They kicked Erik and Dawn out of the NICU because it is 6:30. Erik asked that they call him when they take Analise into surgery, but we probably won't know anything until surgery is over or at least until 8:30 when they let them back in the NICU. But as far as we know, she will have surgery between 6-7.
    Please continue to pray for our Sweet Analise!!
    I had the chance to hold Analise while Dawn was pumping a little bit ago, and Sweet Analise was so peaceful even though she had not eaten since midnight, but at least she is being given fluids through an IV.  While I was talking to her, I told her that so many people were praying for her and her eyebrows went up as if she understood me and was thinking: "For me??" ;-)
    She was wide awake and looking into my eyes the entire time I was holding and talking to her, EXCEPT when she would hear her Daddy's voice, she would then look up and arch her back as hard as she could, trying to look at Erik, who was sitting behind her.  She knows her Papa's voice and she loves him and her Mommy so much!!!
    I will post as soon as she comes out of surgery or as soon as we hear something.

    Surgery postponed to sometime between 6-7pm

    Erik just told us that surgery was postponed to sometime between 6-7pm due to another surgery!! I will let you all know as soon as she goes in to surgery.

    4:45pm and still waiting for surgery!!

    It is 4:45 and we are still waiting for the surgeons to take Analise into surgery. The x-rays were done at 2pm and we are still waiting!! Erik and Dawn want to hold their Sweet Analise as long as they can. I will post when she goes into surgery.

    Surgery postponed to around 4pm today

    Surgery was postponed to about 4pm. They weren't able to take X-rays until about 2:30, that is why they postponed the surgery. The surgeon told Erik and Dawn that they probably will need to remove part of the enlarged colon and they will take out the appendix as well. I will post again right after surgery.

    Her first and hopefully last mohawk!!

    They shaved her head for the PICC line but ended up putting it on her foot.  The other IV is on her hand.  They will be taking our Sweet Analise into surgery at about 1:30.
    Lord, hear our prayers!!

    Wednesday, August 17, 2011

    Day 10 update-Surgery is scheduled for tomorrow at 1pm

    Analise wearing the hat that Abuela crocheted for her
    Analilse's surgery is scheduled for 1pm tomorrow, Thursday.   
    PRAYERS, PRAYERS, AND MORE PRAYERS ARE WHAT WE NEED, 
    ESPECIALLY STARTING AT 1 O'CLOCK TOMORROW!!!  
    WE KNOW WE CAN COUNT ON ALL OF YOU!!!

    Today, the genetic tests came back, and as Dr. Tiller predicted, everything was normal, with no missing or extra chromosomes.  

    Analise has been having a hard time keeping food down today.  She does not have a fever, her exam was normal, and the doctors said they weren't concerned.  She must just be a little nervous about her surgery tomorrow.

    The PICC line will be inserted tonight, as well as only one IV line to be used during surgery.  Poor Analise has been poked so many times because her veins are so tiny and they keep collapsing, that is why they will be using a PICC line.  Erik and Dawn will only be able to feed Analise before midnight tonight, since she will not be able to eat in preparation for surgery tomorrow.

    God willing, the colostomy bag will be gone tomorrow after surgery!!

    Erik and Dawn have requested that no one visit for the next 3-5 days, until Analise has recovered and she is more stable. 

    Today, a very kind friend from Grandpa Richard's school district gave us a bottle of water from Lourdes, France.  Her husband had an extremely tough kind of cancer and after his pilgrimage to Lourdes, France, his cancer went into remission and his doctors called it a "miracle".  Her generosity was very timely, so Grandpa Richard and I had the opportunity to bless our Sweet Analise today from head to toe with the water from Lourdes and prayed over her that God's power would heal her and guide the doctors tomorrow in surgery.  

    Today Dawn's grandpa, Joe and Dawn's aunt, Christine visited and were able to hold Analise.
    Dawn's mom and step-dad, Grandma Annette and Grandpa John also were able to visit again with Analise before her surgery.
    Kaley, Kyle, Kassandra, Auntie Katrina (Erik's sister) and I were finally able to hold our Sweet Analise finally after having waited a long 10 days!!!  Grandpa Richard was also able to hold Analise, but we haven't been able to get the picture yet.  



    Day 10-Analise wearing the splints on her wrists.


    Dawn and Grandpa Joe holding Analise

    Grandma Annette and Grandpa John-
    (it is amazing how our Sweet Analise
    makes such focused eye contact-
    she knows how much she is loved)
    and Aunt Christine with Dawn and Analise

    Auntie Katrina holding Sweet Analise

    Kaley gazing lovingly at her sister Analise

    Big Brother Kyle 

    Kassandra is happy to finally hold her baby sister
    Abuelita holding our Sweet Analise