Home for Good

More than a month baby Jane was at home with dear mom and dad. These last 2 weeks she s coughing. She s having medication for the cough but still there s some cough. Last Tuesday,last day of July, she was throw out some pleghm. Looks like she was having some trouble breathing. Luckily, dad was at home and Jane was admitted to the nearest hospital in Bandung. Doctor said that looks like Jane would not make it. She was unconscious and hardly breath. Around 5 pm, God took her to heaven.
It is been a difficult life for dear Jane but it was worthwhile. We enjoy every minutes with her at home. So sad but still we believe God works in all things for Jane's goodness and also for our goodness. Nothing is in vain. Tough her life seems so short. 6 months.. but her life touch our life and many people. That every minute is worthwhile. And each life no matter how short or how hard is meaningful. All of us owe God our life and every blessings we enjoy.

Home ! for the first time

Wedneday 27 June :
Jane is home !!! Jane is getting better and finally doctor release her from hospital. For the first time since born, she is home. Hooray ! What a miracle. Despite the low saturation ( around 60 - 70 ) she is allowed to discharged from hospital. We went back to Bandung, our beloved hometown.
Being in hospital for months , coming home is such a relieve yet a new chapter begin. Life seems to be more normal now, with family around, housework and  Jane at home. Feels so happy.

Thursday 28 June :
Extra busy with all the things ; taking care our precious baby and housework. Not to mention all unpacked things. Really seemed that we were moving out the whole things at home and now moving it back  :) About Jane: doctor here told us that they found  TR -somekind of leak in Jane's heart and they quite sad that the oxygen level (saturation )still below 80-90% after the surgery. They mention that this condition might give more risk to the next heart surgery.

We convey this to our cardiologist and wait for the opinion. We pray that God will let Jane achieve the expected saturation and continue to receive perfect healing.

Doctors told us to plan for the final heart surgery. Most likely it need to be done in Japan and we need to stay couple months for stem cell procedure after the surgery.
Right now we need to really  take care our little baby. She need to adapt here and need to be protected from any infection / other disease as she has not get proper vaccination.May God protect her always.

We also pray that Jane may soon catch up with normal baby weight and development. Praise God, on mid June, she reach 4,15kg weigh . Previously she was failure to thrive as she only weigh 3,6 kg but she will catch up. We believe so.

In gallery we put several new pictures of Jane while in hospital.Looking back on how bad the situation it was, this is such a miracle that Jane is home with us. Thank you Jesus!

Miracles on the way

Jane 's condition is getting better. She is been out of ICU since last week and we really hope she will be ready for the final heart surgery . The surgery will be done before she reached 2 years old. We believe miracles are keep coming. We have seen the miracles happened for Jane and we believe we 'll see more of it.

Maybe many of you have never seen Jane. We put this video so you may see our little precious Jane. May this become a blessings for all of us. As everyone face hard times and pains in this life.With Jesus, Jane can get through many of it in her life. Lean on Jesus, you will also has the strength to get through it.

You may watch another video at our friend blog : www.littlehelpforjane.blogspot.com

Fight against the germs

Jane- ICU - 12 May when she was desaturated.very low oxygen level

The check shown that the Pseudomonas aeroginosa , the previous bacteria was gone. Now we fight against MRSE. Couple days ago they had remove the HFO ventilator and change to the normal ventilator.Saturation is around 50. But totally now they found 3 bacteria . So, fighting is to be continued...

Saturation and all

Yesterday,Jane was desaturated to 29. Then increase again and reach 60.It is the number stating how many percentage oxygen inside her blood, out of 100 . Medically, Jane got serious infection.Lots of  phlegm coming out from her mouth.  Thrombocyte now is 11,000. She still stay in ICU.
 Only God can heal her. We surrender Jane's life to God for He is the only One who has the authority upon her life. Jesus God surely give Jane what is the best on His sight.

Saturation is getting better

Saturation now reach 40 - 50. Better now. They put support machine for her heart. Heartbeat number 130 - 150. New bacteria is found. They will give her new antibiotic drug to prevent infection. She will get aperesis transfusion again. She got fever this morning but now its gone. Body temp 36.5 Celcius. Thank God...

12 May 2012, 2.30 am

Jane's saturation rate is so low, 20 - 30 . Means the oxygen level is so low. Finally they decide to open her chest to give more space to the lungs. Considering to give a support machine.

Post Surgery

Almost one week after the successful surgery. We thank God for the smooth process during the surgery. Also thank you to all doctors involved. Such a delicate work. However now Jane is struggling with low thrombocyte. Last week doctor suggested to keep the stitch on her chest open to give more space to her swollen lungs but it could not be done since the low thrombocyte risk her a dangerous bleeding.
The lungs were swollen due to long consumption of prostine drug and due to previous lungs infection. The thrombo is now 24.000. Please pray that the thrombo may increase to normal range. God , You are so good.We trust You on Jane's matter and we trust You on anything else.

Next Surgery - This Saturday

Dear God,
Jane will have her next surgery on 5 May 2012. This saturday, she will face the first stage of the three stage -heart surgery. They said, most probably it will be in the morning. The surgeons are ready to come and do the ops. We are excited yet bit worry.
 Please help Jane through this. Please make her strong.. . You have send many angels as Your tools to bless and heal Jane. For that reason, we are grateful. But we seek for You, Lord.We fully aware that You are the One, the Healer.
Forgive us for any wrongs and let nothing stands between Jane and Your miracle.
We pray that You may hold her and heal her. That You will reconstruct her heart and make it normal. Make her comfortable and recovered soon,Lord.
And God... we trust You. Yehovah Jireh. You will provide all we needs.
Through everything ...we believe that You are true God, the living God who create Heaven and earth. You are awesome powerful. Yet You love us so much ...till You  bear our sins and disease in the cross.
Jane 's disease included,right ?  So, Thank You God.
In Jesus Christ, we pray. Amen.

Out of the blue

A good news ! Jane has been able to move out from ICU. A relieve for us. She is now 3.97 kilogram and need to catch up the weight. Hopefully no more infection or such obstacle in the way. Cia you Jane. Thank you Jesus. God is good

ICU

Jane's thrombocyte was increasing and she s getting better. Doctor allowed her to be back to Intermediate care. But sadly, again, after couple days out of ICU , yesterday Jane was moved back to ICU. This is kind of 'roller coaster' situation for us. We need to hang on for Jane. Trying to always lean on His words, His promises, His power.  

Infection and slight bleeding

Jane was sent to ICU again yesterday.  The thrombocyte count was 6000. They said Jane get an infection and there is a slight bleeding on the brain. We feel worry and sad. We pray that God may heal her soon...

High CRP

Yesterday, Jane moved to ICU for the procedure of iv change,but then we noticed that her Crp was so high, it reached 303 while the white blood cell counts 7390 , led 13 and the thrombocyte just 5000. The iv change procedure now pending for further review.

Two Months now

Happy Two Months ...dear Jane!!!!  Just yesterday, at 19 March, Jane has turn to 2 month old baby. Such little baby but she reminds us that each day is a blessing.
We met some children who eventually went to heaven and realize how short our life can be. So, we are grateful for each day we can share our love with Jane. Each day is an opportunity we spend with our loved one. It s worth so... much... Birthday does not come once a year. For us, every month too ! :)

Over the Fever

1 Peter 2 : 24
"He himself bore our sins in his body on the cross, so that, free from sins, we might live for righteousness, by His wounds, you have been healed."

Jane got fever and again go into ICU at 10 March. Her breath was fast and her body temperature reach 39 C. They check her leukocyte (white blood cell ) and find it reach 25,000, above the normal number of 10,000. Looks like she got some infection.After medication and some treatment, Thank God, Jane was recovered and transferred back to Intermediate Care Unit at 15 March. By His wounds, Jane has been healed.

In the picture :Our Little Jane just after having her first breastfeeding from mom. So cute...

Plug

Yesterday pediatric change Jane's plug  ( vena section ). It was already a month since the last change. The plug could not be set up on hand as it was swollen, so hip is better. It was hurting yet sadly necessary. Jane loose weight a bit to 3,46kg. We hope she will gain weight soon to 5 kg as it is the target of body weight for her to undergo the next step of heart surgery. Tough it seemed a long journey,but we pray that God's grace will always strengthen all of us. Kindly pray that Jane may grow up well each day and be delivered from pain and disease by Lord Jesus, our Savior, Mighty Healer. Jane is recovering.Thank you.

Recovering Jane

Praise God, Jane may discharged from ICU since yesterday, 21 February, and move to Intermediate Care Unit. After staying there for 12 days, the ventilator was weaned off and the surgery wound is healing. We hope Jane would recovered soon. During surgery the doctor did PA Banding as first aid. One of the reason, PA Banding will helps to protect her lungs as well. We are now waiting for Jane's weight to reach 5 kilogram and her condition to be good enough , then it is considered for Jane to undergo next surgery.

More about HLHS

For anyone who still unclear about HLHS. Please click this link to see the animation of HLHS compared with normal heart. 

Surgery was successful

Praise Lord Jesus for the successful surgery this morning. Now baby Jane is recovering. The next stage would be Norwood Sanno surgery. It will take sometimes before we step to this stage.
Thank you to the surgery team ;  doctors and nurses for all the help.
Thank you everyone for the support and prayers.

Please pray for 9 February surgery

Dear all, Please pray for today surgery on 9 February. The surgery is for PAB surgery. It would be in the morning. Kindly pray that little Jane be healed completely.
May she always in comfort and safe.
May her body be protected and strong during surgery and after.
May her mind be at peace as His angels surrounding her.
May God hear our prayer.
Psalm 91 : 9 - 16