This is little G

I am "Gigi". I have a new baby sister I call "Baby Cakes". I also have 2 big sisters, "Peacock" and "Robin". I have 1 big brother, "Blue Jay". Now I'm a big sister to "Baby Cakes". I have waited 8 years for a baby sister. I love my new baby sister. I'm writing about my life, my family, fashion, crafts, and school. Love, Gigi

Wednesday, June 4, 2014

Last Day of School!!

               

                    
                                   

                          Hi, It's GiGi. Today was the last day of school but I couldn't go to school because it was Blue Jay's  graduation from middle school! I'm so excited for Summer. Today after the graduation we went to Panera. Then we went to Target and bougt a treat. 

Saturday, October 12, 2013

Post Surgery

Let's do some catch up.....

The night before we went to UCSF, Grace's best friend came by to give her a hug and a few crafty items to do while she was down.





While Grace was recovering she had many visitors and well wishes, cards and gifts. This made her very happy and I was touched by the out pouring of love and support.


 

Her Aunt from Washington sent her a nice package with these pearls which she has not taken off since.

BFF from school came by and couldn't wait for GiGi to get better for a play date.
Aunt Kat came by with some goodies and made her feel really special. Thanks Kat!
She always looks good, unless of course she's not. :) 
 
She made a lot of the crafts that were given to her.



 

After sewing so much by hand, I taught her how to use the sewing machine.


She practiced a straight line on just about all the scrap material I had, then we made head bands.

 
 
After 2 weeks of taking it easy and thought we woulld get back to normal we had a little scare and ended up back at the doctors.
 
The medication she was taking to thin her blood, made her bruise very easy and
she had a bruise that looked like it might be a blood clot....after a stressful few days and stopping meds it started to clear up.
 

 Her pediatrician had never seen anything like it so she called in another doctor who then said we should see her cardiologist who was in India on vacation and so then referred us to the operating doctor at UCSF....it was all just a bit tooo much. I was on edge and if GiGi  wasn't smiling and happy as ever,  I would have been a much bigger mess.

 It started out the size of a dime and she never bumped into anything or knew of getting hurt, we just sort of noticed it and in the course of a weekend it grew to this.







 
 We are getting good at keeping Baby Cakes busy.  At the Dr.s office with a blue glove blown up into a "happy hand", priceless!

AND life goes on.........
 

Saturday, October 5, 2013

Sharing moments of Grace

Daddy Checking her in to UCSF 5:30 am
a little nervous 6:00am
6:30 am meeting with anesthesiologist


7:00 the room where they make it all happen




mommy holding her hand limp hand, she is now asleep
It's all over and went well. She is finally waking up


She has to keep her legs still and lay flat for 4 hours



She is finally able to sit up


Great Nurse!  She is getting her IV taken out now
Wrapped in her heart blanket, ready to come home



sister sees....ready to go home..
GG recovering and Little Lou by her side



gifts from family and friends
recovering and keeping busy
   














































































 GiGi is feeling well!
We all feel a little lighter.
 
We found out about GG's heart problems when she was 2 weeks old. At that time she spent 10 days in the hospital and we weren't sure if she would live. Her body was shutting down while her heart raced rapidly at 350 beats per minute. She was grey,  cold, and almost lifeless. They sat me on the stretcher and put her in my arms on the way to the hospital in the ambulance. I was so scared. 
 
This is how it all started.

 I was taking our little GG to the doctors office for a follow up visit after being admitted to the hospital 2 days prior. She had a very high fever. She was quarantined for fear that she might have a bacterial infection, but when nothing was found in the blood work and the fever had passed, they released her and gave us an early morning follow up appointment  for 2 days later.

 I had a bad feeling in my gut but felt I was being paranoid.

On the night before her follow up visit I gave her a bath, longer than usual to take all the sticky tape off  of her arms and feet, from the IVs and such from her hospital stay.
I felt so bad for her the first night that I just left it alone. She had be through enough already I thought why not give her a rest. But that night I wanted her all nice and clean from the sticky stuff.  When she was all bathed and dressed for the night and her bedtime routine complete I went to put her in her crib, but then I noticed her hands were extremely cold, like ice. I decided to  have her sleep with me all night. Her hands never warmed up. All night long her little hands remained cold. I felt something wrong in my gut but thought I was being paranoid. I kept reassuring myself that we just took her to the hospital and got a bill of good health.  I didn't notice anything else wrong. She was such a well behaved baby, at 2 weeks old she barely cried until the doctors started pricking her with needles.

I had no idea that her cold hands were a sign of something terribly wrong. Her circulatory system was having a problem because her heart was beating fast.I didn't think to check her heart beat. If she didn't have an early morning appointment, I would have laid her down for a morning nap and she would have never woken up. I have thought of that often. By the Grace of God, my thought of keeping her close and sleeping with me that night on my chest instead of in her own crib, our hearts beating next to each other, mother and daughter playing a tune, kept her safe. Later, I would come to find out that this is exactly what they do with newborns when they are struggling, chest to chest, kangaroo cuddle, I think they call it.

When I put her in her car seat that morning to ready her for our trip to the doctors office, I kept trying to shake the feeling that something wasn't right. I felt everyone would think I was over reacting. When I mentioned to the doctor that her hands felt really cold to me, and that I maybe I was being a worry wort because we were just here two days ago he just listened to me...but then as I was talking to him I looked at her and she seemed to be sweaty even though it was not hot inside and she was not bundled..."she is sweaty" I said. It didn't dawn on me that she was clammy, but it got the doctor's attention as the two things meant something to him. He checked her pulse with his fingers and then immediately grabbed his stethoscope, it confirmed his concern. Her heart was racing out of control. He quickly picked her up called out to the nurses to get something that I couldn't understand and to call the ambulance. Josh was taken to the nurses station and I was escorted to a little room where GG was hooked her up to a monitor which showed her heart racing at 350 BPM. She was in a bucket they were filling up with ice in her diaper. I did not understand...and she wasn't even  crying. I was crying, I didn't know what to think.

Then someone told me to call someone to pick up Little J, they would watch him for me. I needed to call my husband to meet us at the hospital, the ambulance was on the way. The next thing I knew the paramedics told me to sit on the stretcher and handed me my baby and we were taken away to the hospital. I just held her and prayed and prayed and prayed. She looked so lifeless. I remember thinking why am I holding her instead of somebody doing something for her. She looked grey and just lifeless and cold. I held her close and kissed on her and prayed a most sincere prayer. I was scared out of my mind that I would lose her. The minute we got to the ER they took her to the NICU where they don't usually re-admit babies that have been discharged after birth, but there was no other place for her. Nonetheless, they took her there and left my husband and I in the hallway...we were scared our of our minds. A social worker whisked us off and we were so confused. We wanted to be with our baby, but they wanted to see if we had done something to cause this. ??? ABSURD!!! (I feel for anyone who might ever have to deal with this.) After the questions resolved we were finally able to be with our little one once again.  From outside the door we could hear her cry! This was a good sign.  They came out and told us that they tried several vagal maneuvers and the one that worked went something like this...they took a bag of ice and struck her between the eyes just above the nose and that stopped her heart from racing. Now doubt a bruise would occur but she was now having a regular heartbeat.

We took turns sleeping in a metal chair in a room about 6 feet by 6 feet. They usually don't have parents stay with their children in the NICU but we insisted that we were not going to leave her sight even if the metal chair was our only accommodation.
 After 2 days in NICU and 8 days in the pediatric wing, we had no real answers and were getting rather anxious.  My mother in law also did some research for us and found many other interesting things about the facility and staff, which let's just say left us concerned for our little one health and safety. We started asking more questions and caused a little bit of a ruckus to which, we were finally being heard.We asked for a referral to a pediatric cardiologist finding out that all the equipment they had was for adult usage and definitely not for infants. I was so mad. We met with Dr. Desai, a renowned cardiologist in Hayward and have been with him ever since. Even when Kaiser brought a pediatric cardiologist wing to Stockton, we stuck to our guns that we would travel the distance to see Dr. Desai. and it is he who recommended us to the great surgeon at UCSF Children's hospital.

Once meeting with Dr. Desai we found out that she had a hole in her heart and a problem with one of her valves, back flowing blood and then an electrical problem which was causing the SVT. She was put on medication, digoxion for a year and a half and then they took her off of it to see if she would have any symptoms so they could diagnose better.  She was fine until she got a fever and a cold and her heart raced to 240 and she was having trouble breathing. They were able to get her heart rate down fairly easy and she had a breathing treatment and everything seemed to be OK. Now, I just worried every time she would have a cold,it would be the onset of an episode. Little did I know that a series of hot and cold would be a trigger for our little G.  She had an episode of 240 lasting about an hour while swimming and then going into a hot tub at a friends house. Her main complaint was being tired and her lip felt funny. The mom didn't think much of it as, they were all a little worn out, but when we brought her home, she went straight to bed at like 5pm and said she thought she just might sleep forever. Darren thought it odd and quickly got out the stethoscope and sure enough couldn't count the beats fast enough. While he called the ambulance I ran next door to the neighbor, an Emergency Surgeon, he had equipment to catch a reading of 240. When  we told  her the ambulance was on the way she screamed really loud while reaching for her daddy and her heart rate jumped back to normal, right there on the machine you could see back down to 99. It was crazy. Being that our neighbor was not an affiliate doctor they could not use the findings technically. So, once again a heart monitor was issued. A vagal maneuver to come in handy next time. These were just some of the things she has endured.

Yearly meetings with cardiologist and when episodes occur, more appointments, more tests, more monitoring and lets face it, more stress on all around.

Cardiologists' many findings concluded...
The hole in her heart closed,  which we felt was wonderful and miraculous.
He thought she might have Wolff-Parkinson-White syndrome disease... http://en.wikipedia.org/wiki/Wolff%E2%80%93Parkinson%E2%80%93White_syndrome
and then later decided on  a mild ebstein's anomaly  http://www.cincinnatichildrens.org/health/e/ebstein/
which was causing the Supraventricular Tachycardia episodes.
http://en.wikipedia.org/wiki/Supraventricular_tachycardia

SVT is generally not life threatening, though it may cause worsening heart function if prolonged.  The main issue then is the frequency in which they occur and how long it lasts and is it interfering with normal life.

 The last episode GG had was July 27th, after taking a warm shower and then drinking a glass of cold water. She immediately told me she didn't feel good and then still wrapped in her towel I could see her heart was pounding so fast, her whole chest was moving. She felt so terrible and could only lay down. I quickly hooked up her heart monitor and pushed the button to record. I was so alarmed that her chest was moving so quickly I wanted to call 911 but having just moved, I had no phone service and ironically my cell phone had no service in the house. (I have since switched cell provider.) I ran  outside to see if I could get service then realized that I couldn't leave the baby and I couldn't monitor GG, I started to panic, I said a prayer and tried many vagal maneuvers, when all the sudden it stopped and she could sense that it would be OK and you could see her chest no longer thumping out of control.  UGH, This is the panic that sets in every time she had an episode. Only, luckily this time it was caught on her heart monitor and the doctor received shortly thereafter and concluded that at the rate of 250 bpm she should be seen within 10 minutes. This is almost virtually impossible, unless the paramedics are parked in the nearby shopping center.
We had to make a decision. GG would need to take medication forever with side effects, or have the surgery. After a few days of consideration we chose the surgery.


I just wanted to paint a little picture for you. We went days, and weeks, and a few years with out any problems but it was always in the back of my mind. I always worried about this little one of mine and how precious life is and how hard it would be without her, or anyone of my family members.

This reoccurring problem carved an echo in my heart...."what if ?, what if, what if".

I had a hard time shaking it. It haunted me the weeks leading up to the surgery.

Today I have peace that Heavenly Father is watching over her, just as he watches over all of us, but it doesn't fill the hole completely. I wanted to know that if her life was short then I would have had most memorable and marvelous moments to remember. I have created fabulous Fridays with her since she was little, taking her downtown shopping, even just window shopping. Since the age of a year and a half, she has loved the little stores downtown and the owners recognize her and know her by name. I tried to make every little thing a celebration...a potato chip party? sure, why not. When she started school I wanted to be right by her side. I volunteered and worked everyday in her Kindergarten Class. In doing all these little things it was important to find balance. I don't think any of my Littles would say that GG got more attention, because it made me that much more self aware of everyone Else's needs. Everyone had "wins" to celebrate and this was my theme of my previous blog. It was about everyone. The importance of exploring ones desires and trying new things...my Littles have learned; singing, dancing, cheering, photography, painting, putting puzzles together, crocheting, sewing, knitting, pottery, drawing, modeling, hiking, community service, camping, cooking, baking, scouting, tennis, and hopefully a sense of optimism.

SO, now that I feel a weight lifted off my heart without the echos of what if, I want to say thank you for being there. Thank you for supporting us. Thank you friends, family, doctors and staff for all the years of being there and helping us along the way.

                                                   Gratitude Galore!!! mu ah, mu ah!!

I know that we still have things to follow up on, and the next 6 months will be a good indication of  how successful the procedure was.  She will always see a Cardiologist. But now she can share her story and help others. There is a summer camp called Camp David that we are looking it. It is for those afflicted with heart disease. She can go as a camper and a volunteer as she gets older.

                    I am full of hope. Our GG is Grace and it has been given.

Loves, MG 11/5/13

Monday, September 23, 2013

GiGi

Darren took this picture of GiGi yesterday at church.
 
We are leaving now for UCSF.
Thank you to all our family and friends who have prayed & fasted  and are continuing to  pray and fast in behalf of our daughter. 
Thank you for all the support you have given her and our family.
 
WE all know that our Heavenly Father is watching over her
and those hands that will be touching her.
We feel your love and His.
Much,
M
 

Thursday, September 19, 2013

Surgery is scheduled

Trying to keep up with all the events sure makes time go by quickly.

Grace is getting ready for surgery on Tuesday the 24th of September at UCSF Benioff Children's Hospital. We are all positive everything will go well and appreciate the kind staff for making this transition go smoothly. We are so lucky that we were able to get the referral to go to such an outstanding doctor and team.

I had a hard time finding a hotel and I reserved one which was rather pricey just to make sure we could get a place. There are a ton of conventions happening that week and so most places are booked. This was stressing me out a little, so I kept calling around and this Monday I finally found one for half the price and it just happens to be along the beach.  We plan on spending the day doing something fun before we settle in for the night. The day of surgery they have reserved a room for us at the hospital. We can stay with her after surgery however long is needed, it only has one bed but we will manage. Whew.

GiGi has been a assigned a Child Life Specialist and she sent a package to Grace to prepare her for her upcoming procedure. A few items to make her feel more comfortable and to get used to the things she will use there.

 A comfort doll
 Instructions, pictures of all the rooms she'll be in, the equipment and some supplies.
 sleeping mask that is suppose to smell like bubble gum, but GiGi says it does not.
 
 She is taking this all in great stride. She is concerned about somethings, but most recently, how she is going to use the bathroom if she can't walk.  We assure her that all will be taken care of, and that other children have gone through this same thing.

She received letters in the mail from her distant  2nd cousins in New Zealand.
Thank you!


 They actually live in the North Island and sent a wonderful postcard of it.

Here they are visiting Yosemite this summer after our reunion.  Thank you for your well wishes.
 




Thank you, we will put them up in her room while she recovers.
 
 
I finally finished a security blanket for her, but it is a surprise. I'll give it to her the night before.
 
 



 
(Mom you would be proud of me. Now I know how to make blankets like you made for my babies and I can make some for my grandbabies some day.)

 
Anesthetist called today to go over medical history and the  doctors assistant called with our scheduled time of 6:30am. First on the docket. We will try to send updates via text or email to the grandparents.  Prayers Tuesday for sure.
 
We love you all.