Schezerade Hope

It has been more than a year since I turned this into a blog for my daughter. It will still remain like this while I'm working on a new site, thank you for all your support and God Bless you all!
- bong

The Final Note is not on the last page

Baby Hope joined her creator at 2:35 am Saturday, August 21. Three months and one day after she was born. She will be missed.

After three months of fighting for her life, Baby Hope succumbed to multiple organ failure brought about by her prematurity.

We have always hoped to bring her home someday, but she has gone home to where she belongs. We have always hoped that we will watch our daughter grow up to be beautiful, but now she watches over us as we grow to be beautiful. We have always hoped that we can teach her about life as she grows up, but her short stay with us has taught us more about living life. She is an angel sent to us.

To our little angel Hope - We love you!

To all those you have shared their prayers and resources, all those who have prayed and hoped for her survival, and all those who have loved and will still continue to love her - we thank you from the bottom of our hearts. May God Bless you all!

TOUGHEST DECISION

Yesterday, i was informed that the doctors can no longer find veins for Hope's IV line in her arms and legs. The solution is to do a cut-down --- that is to put the IV line in her jugular vein, the main vein in the neck area. Before this procedure will be done, we need to give our consent as parents.

So many thins ran into my mind. Hope has been fighting for her life ever since she has been born... She has been through a lot... She's a great fighter... She might already be in so much pain... She has been sleeping and hasn't been responding since Tuesday night... I want to give her everything she needs... Is this going to help her or is it going to inflict pain on her?... Are we doing all these for her sake or for ours?

Two Major Things:

1. If we don't do this, we might be depriving Hope of the chance to fight for her life

2. If we do this, we might just be prolonging her suffering.

I prayed really hard... I talked to a priest-friend... to a doctor-cousin... to Dr. Quimbo, our neonatologist... to Dr. Caballes, the surgeon... to my brother... to my mother... and finally to daddy Bong...

In the end, daddy Bong and I decided to go on with it... someone once told us: the Lord performs miracles to those who help themselves...


mommy g.

p.s.

some signs (though we didn't ask for but was given to us)

... Hope's feet moved when we entered the room, while her doctor was doing CPT... (we can't tell if it's response or reflex)

... i opened the bible randomly: Resurrection of _____'s son (can't even remember the name; still trying to find that page!)

YOUR WILL BE DONE


The peritoneal drain has been a big help to Hope. Since the fluid that accumulated in her abdominal cavity has already been removed, her lungs and heart were relieved. However, her urine output has still been insignificant. So last Tuesday, after consulting with her doctors and Kuya Armand (a cousin who is also a doctor) Daddy Bong and I decided to have Hope undergo peritoneal dialysis to help her remove toxins in her body which is supposed to be excreted through her urine. The procedure ended last night.

According to the doctors, tests done on the fluid which was drained through the peritoneal drain showed no infection. This rules out the possibility of ruptured intestines (NEC) which was initially considered. Tests also showed that the dialysis have significantly decreased Hope's creatinine and potassium, which are indicators of toxin in her body.

However, due to fluid accumulation in her abdominal cavity, there is also a possibility that fluid has accumulated in her brain, a condition called cerebral edema. This is probably the reason why Hope has been sleeping ever since Tuesday night.

We continue to pray for Hope and we ask all of you to do the same. Nothing is impossible with the best Healer, our God. If it is His will, then it will happen. Daddy Bong and I remain faithful to Him for Jesus promised:

"If on earth two of you are united in asking for anything, it will be granted to you by my heavenly Father. For where two or more are gathered in my Name, I am there among them." Matthew 18:19-20


Mommy G

Draining her abdominal cavity
Last night at around 9pm. A surgeon at the hospital talked to us about Hope's condition regarding her bloating abdominal cavity; the possible diagnosis are NEC, failure of baby to absorb her fluids due to lack of protein and possible liver/ kidney failure. So they drained the fluid in her abdominal cavity. They will test the fluids they drained this morning and we're still hoping that nothing major will happen to Hope. Please continue your prayers as we need them the most now. Thank you and God Bless!
-papa b

Its all about Faith and Hope
Yesterday, Hope was in critical condition. She just finished one of her many blood transfusions as her oxygen level was getting lower. Her red blood cells (RBC are the oxygen carriers in the blood) was low. In addition to that, notice that in the pictures you will see that she has a distended stomach, this is due to accumulation of liquids in her body (nag mamanas) which she cannot expel - her urine volume is very low. This bloating has spread out already to her sides. Her digestive system is also not that well developed that she cannot absorb most of her milk intake. As of last night she was given several antibiotics and medicines to treat these conditions. We are asking for more prayers, please pray for baby Hope for her full recovery.

I spend a long time with Hope last night singing to her, caressing her stomach and lungs, and telling her stories. And everytime i do that her oxygen level goes up and she seems relaxed. To all fathers out there - never estimate the power of your healing touch and your soothing voice! :)

To those you are still extending their help to us - God bless all of you! please continue to pray for Hope.
-Papa B

Close to 1
 
Hope has already reached 2 pounds!... 3 more ounces to go!

mommy gisselle

The Elves and the Shoemaker
I'd like to take this time to thank all those anonymous donors who have sent their financial help thru our friends and the bank. You are a blessing to Hope and to all of us. Thank you and God Bless! 
daddy bong

A Test of Faith

Hope had to be re-intubated last Saturday because she got so tired as indicated  by her low oxygen saturation.  Sunday night we also found out that her RBCs are low.  Probably this contributed her desaturation last Saturday, as RBCs are the oxygen carriers in our body. 

This series of extubation and re-intubation has been really an emotional rollercoaster for me.  I really feel that our faith is being tested... We stand firm on our Lord's promise to us!

mommy gisselle

Breastmilk is still best for babies

Recently, my milk production has decreased.  We're forced to do mixed feeding with Hope --- that is we give her baby formula everytime my breastmilk is not enough. Her tummy has been distended ever since we started this.  We think she still can't digest formula milk, unlike breastmilk.  We had to hold feeding the whole day of Wednesday.  But we started feeding again this lunchtime.  Thanks to Tita Anne who shared some of her milk with us, we have more breastmilk supply. 

mommy gisselle

Hope turns 2 Months

Yesterday, we celebrated Hope's '2nd month birthday'.  Lola Nini, Tita Leah, Tita Jerdi, Tito Beng and Tita Nina joined us in the hospital.  We brought pansit, cake and balloons! :)  We also had picture taking so wait for the new pictures that we will post. 

The Lord gave us the perfect gift --- Hope has been extubated the day before her birthday!  Although still connected to the respirator (in CPAP mode*) through nasal prongs, Hope has been breathing on her own since 3 pm last Monday. 

Also, she has gained 2 more ounces --- she's now 1 lb 12 oz! 

 
mommy gisselle

* CPAP - continuous positive airway path (to the doctors, please correct me if i'm wrong! :) )
              - the respirator provides continuous oxygen even if breathing stops

Sad But Full of Hope

Yesterday, we felt so sad when we found out that Hope has been reintubated --- she's hooked back to her respirator. i know that a lot of you will also feel sad but still we have something to thank the Lord for. Unlike before, when it took her only 6 hours before being re0intubated, now she was able to breathe on her own for almost 40 hours. We thank God for this improvement. Our faith in Him is strengthened even more. We believe that everything will happen in His time.

We find comfort in our Lord’s words:

As for you, every hair of your head has been counted. So do not be afraid: you are worth much more than many sparrows. --- Mt. 10: 30-31

Trust in Yahweh forever, for Yahweh is an everlasting Rock. --- Is 26:4


We are also inspired by how beautiful she looks in the pictures!


mommy gisselle

Words cannot describe how happy i feel, now that Hope is breathing on her own --- without difficulty, that is. Now that her tube has been removed, it was the first time i saw her whole face. I couldn't stop admiring how beautiful she is! She really is an angel sent by God to our family. I was doing my daily reading of the bible this morning and most of the passages i read were all about thanksgiving...

It is good to give thanks to the Lord,
to sing praise to your name, O Most High,
To proclaim your grace in the morning ,
to declare your faithfulness at night,
accompanied by music from the lyre
and the melody of lute and harp. --- Ps 92:2-4

For I will proclaim the name of the Lord
and declare the greatness of our God.
He is the Rock, and perfect are all His works,
just are all His ways.
A faithful God He is
upright and just and unerring. --- Dt 32:1-4

"Whoever acknowledges me before others
I will acknowledge before my father in heaven." --- Mt 10:32


mommy gisselle

ANSWERED PRAYER

It's 2 am and we just came home from the hospital. We are so happy because Hope is now breathing on her own! Indeed the Lord is faithful to his promises!

mommy gisselle

There is a possibility that Hope will be extubated --- unhooked from the respirator --- today. We belive that the Lord is faithful to his His promise: that He will make Hope's lungs strong enough to breathe on her own so that the respirator will be removed permanently.

mommy gisselle

It’s been quite some time since I last posted an update about Hope. I’ve been spending more time in the hospital the past 2 weeks. Last Wednesday (June 30) was the longest: I stayed there for almost 8 hours (para na ko nag-duty). It was actually my choice because the nurses were so busy (toxic, in their lingo), I volunteered to be the one to look after my baby. Of course this was favorable for me because I love being with Hope. Anyway, here are my thoughts for the past days…

1. Hope’s condition
June 26 – blood transfusion
July 4 – bolus feeding

Aside from the dip in Hope’s RBCs last week, which is why she needed blood transfusion (thanks to her Tita Lila), Hope’s condition has been stable, although I’ve noticed for several days last week that her heart rate was lower than usual. We found out that it was because her blood sugar went down. Dr Quimbo has addressed this problem immediately by giving her hydrocortisone (Solucortef).

Now, Hope has very good heart rate and oxygen saturation. Her condition has really been improving. Her respirator settings are at its lowest (FiO2: 23-25%, RR: 12-15 b/min Pressure: 4), which is indicative that her lungs are gaining strength. The good news is, they started bolus feeding last July 4. As opposed to continuous feeding (the way they were giving her milk before) wherein she is given milk continuously for the whole day (sort of like how an IV works), bolus feeding is giving her milk intermittently --- very similar to breastfeeding, only they use feeding tube. This is an indication that her stomach can tolerate more volume of milk already at a given time. As of now, they are feeding her 3ml of milk every 2 hours.

The best news this week: she is now 1lb 10 oz!

2. Strength from the Big Guy
The following are passages in the bible that really struck me this week:

I will turn their mourning into gladness
I will give them comfort and joy for sorrow --- Jer 31:14

“Go and proclaim this message: The kingdom of heaven is near” --- Mt 10:7
(this one for two consecutive days)

“My daughter has just died, but come and place your hands on her,
and she will live.” Jesus went in and took the girl by the hand
and she stood up. --- Mt. 9: 18, 25

“Courage my daughter, your faith has saved you” --- Mt 9:22

3. An Experience of Sisterhood
( A brief backgrounder: When I was in college, I joined the best sorority in the campus --- the UP Sigma Delta Phi Sorority. My family and some of my friends couldn’t really understand me when I talk about our sisterhood. I hope they get to read this.)

Last Friday (June 25), I attended the induction of the new board of the UP Sigma Delta Phi Alumnae Association. It was attended by a lot of sisters, some I only saw that night, from different batches: from batch 1938 to the resident sisters. Some of the sisters there that night don’t really know me personally, except that we share the bond of sisterhood thru Sigma Delta Phi. That’s why I was really touched, overwhelmed even but not surprised, by everyone’s response to my plea for help for Hope. The board immediately approved to pledge financial help thru the project H.O.P.E. (they were amazed that my daughter bears the same name). That same night, the rest of the sisters ‘passed the hat’ for Hope that same night and we were able to raise quite a sum of money.

My gratitude and appreciation goes beyond the amount of help that my sorority sisters are extending to us. Still, I am overwhelmed and I am sincerely thankful for their willingness and their immediate response to help.

4. From Sisterhood to Motherhood
Aside from the help from my sisters, who themselves are also mothers, another batch of mothers of my classmates (Ian and Aldwin) in Pisay are sending help. i realized that this is the 2nd batch of mothers of my batchmates who are sending help to us.

Of course we appreciate all the help that we are getting but somehow help from mothers like me give me a special feeling. It’s like mothers have their own bond because of the same experiences they go through (reminds me of sisterhood!). Makes me appreciate mothers more --- especially my own mom. This is very special for me because my mom and I used to be on the opposite extremes… I realize that there’s truth in what I always hear: you will only understand your mother when you’re a mother yourself.

Incidentally it’s my mother-in-law’s birthday last July 4

mommy gisselle

Baby Hope has been stable for the past week. Oxygen level is good. Heartrate ok. She is still under a respirator and hopefully the doctors will remove it soon to check if she can breathe on her own again. She's a little bigger now, she's back to 1 lb and 6 oz. (her original weight when whe was born - babies lose weight when they are born because of the water loss). Now she's under a scheduled feeding of 5 ml every three hours. Mommy Gisselle will update soon :)
-Daddy Bong

I just called the hospital and they said that they have resumed the feeding early this evening (Friday evening). We hope Hope will be able to increase her milk intake up to 4 ml/hour without stomach distention.
I'd like to thank Green 4-7 and Blue 4-2 for the help they have extended today. God Bless all of you! There will be a healing mass for Hope at the UP chapel tom saturday at 12 noon. We will be there to pray for Hope and for all the people that have helped us.

Papa B

last night we found out that feeding has stopped since 7 am yesterday. her abdomen is distended again. we feel bad but we know she will overcome whatever the cause of this. we pray and we claim that feeding will resume today.

mommy gisselle

How HE works

I went to PGH this morning to buy one of Hope's medicines, since it is cheaper there. She needs the medicine by lunch time so I was in a hurry. When I got to the pharmacy, there was a long line, and so I patiently waited in the line.

When it was my turn already, I was informed that I need a prescription from PGH. How on earth will I get one?! So i tried contacting 2 of our friends whom we know are having residency in PGH. But they were not responding (may be busy or something).

I was running out of time when I suddenly saw a familiar face. I wasn't sure at first if it was really her since i haven't seen her for a long long time (the last i heard, she was in isabela). Still, i called out her name... I almost cried when she turned and recognized me! She was one of my batchmates in high school and she is currently doing her residency in PGH, and guess what department?! --- PEDIATRICS!.

Not only was she able to give me a prescription, we didn't have to line up at all. I got to the hospital at 11:45. :)

mommy gisselle

Another Good News

We're so happy that Hope's umbilical catheter has been removed yesterday afternoon! Miraculously, they were able to find a vein in her right arm large enough to insert an IV line! At least they didn't have to put it near her neck! We're praying that the IV doesn't get out of line so that they don't have to reinsert.

Also, yesterday the feeding had to be on hold because her stomach was distended. But this morning, it was resumed. When i visited this afternoon, it's already at 2 ml/hour. We're also praying that we reach 4 ml/hour so that the IV can be removed finally.

mommy gisselle

Umbilical Catheter

As of now, Hope's IV line is still attached to her umbilicus through an umbilical catheter. It has been like that since she was born. According to Dr. Quimbo, this should be removed already because this is very prone to infection. However, because her veins are still small, they can't transfer the line. One option is to put it in a vein near her neck, as this area has larger veins. Another option is to totally remove the IV line --- provided that she is given full feeding (that is, 4 ml of milk per hour) without distention of the stomach.

So far the most that she can tolerate is 3 ml per hour, but eventually feeding is stopped because her stomach gets distended. When feeding is resumed, it starts at 1 ml/hour and increases gradually. However, 4ml/hour is not reached because her stomach gets distended every now and then.

Supplies and Meds

We thank everyone who sent us medicines and medical supplies. Our house looks like a relief center, with all the boxes and i am getting crazy (crazy-happy) organizing them. The nurses are always in awe everytime i tell them that the supplies i bring to the hospital are just given to us by friends.

For those who are still planning to give us supplies, although we have lots already, we need more of 1ml syringes, feeding tubes and suction catheter (size: fr. 5, brand PharmaPlast and the nurses specifies that they prefer the straight ones), extension tubes (100 cm and 50 cm) and needles (specifically, size 19 because we have enough of the others). Each of these are used at least three times a day.

For the meds, we already have enough of meronem. Thank you to Mrs. Rodriguez (Joyce's mom) and Dr. Espiritu (Dre's mom). We are now trying to look for Ciprobay (IV infusion, 100 mg, 50 ml, distributed by Bayer). We also need sterile water.

Again, we thank everyone for all the supplies that you have sent us. We can't post all your names here, but we promise to always include all of you in our prayers.


mommy gisselle

Some good news...

It's 1 am and we just came home from the hospital and we're happy to share with all of you that Hope is doing great. She has recovered from that incident last Wednesday night. Her respirator setting has been reduced to 27% from 45%. As i understand this is the amount of oxygen that the respirator supplies to her and the lower this is, the better for her. This means she can get more oxygen on her own from her environment. Her feeding has also resumed. She started with 1 ml of milk per hour and now she's at 2 ml per hour. If only she can tolerate 4 ml of milk per hour without the distention of her stomach, her umbilical catheter can be removed!

With all these improvements, we have a lot to thank. Of course we thank our Lord Almighty; also her doctor, Dr. Quimbo and her nurses (Grace, Helen, Irma, Novi, Marissa, and Cherry --- i hope i didn;t miss anyone) and the resident doctors; And of course everyone who has been praying for her and sending 'gifts of love' to her.

We still ask everyone to continue praying for her, most especially for her lungs and for her stomach & intestines.


mommy gisselle

As Bong mentioned, there were some bad news last Wednesday night . On that day, Hope's respirator was removed at around 12 pm but was hooked back at 6 pm because she was already having difficulty breathing due to accumulated secretions in her lungs. We were also informed that Hope has actually developed mild (if there’s such a thing) BPD. (Dr. Quimbo, her neonatologist, has already given her some treatment to address this problem.) Dr. Quimbo also expressed her concern about Hope’s umbilical catheter (her IV is connected to her navel) being there for long already (prone to infection) and the possibility of transferring this to a vein near her neck (it is in this area where veins are large enough).

On that day, I did not visit her because I had coughs. You can just imagine how we felt when we received a call from Dr. Quimbo with all these news. I was sleepless the whole night. But I found comfort in the readings from the Bible for the next days. Let me share them with you:

Mt. 6:7-15 “Your Father knows what you need before you ask Him.”
Ezk 34:11-16 “Indeed Yahweh says this: I myself will care for my sheep and watch over them.”
Rom 5:5-11 “And hope does not disappoint us because the Holy Spirit has been given to us, pouring into our hearts the love of God.”

And the Lord has been faithful to His promises. All the nurses have been telling us how great a fighter Hope is. Last night when we visited her, she was awake and she responded to my touch, the way she has been doing --- she grips my finger as I put it in her tiny hands. The setting of the respirator has been reduced to 60% O2 from 100% since Wednesday night. When I called up this morning, they reduced it further to 45%. This means that her breathing is improving. Her blood sugar, which went up (they said maybe because of stress) has also been decreasing already. Her nurse also told me this morning that she is getting less secretions when she does suctioning.

We thank the Lord for continuously blessing Hope and for giving her the strength to keep on fighting for her life. We also thank all those who have been praying for Hope, and for Bong & I as well. Our gratitude also to everyone who has been sending help to us in all forms. It is from all of you that we draw strength from.

Mommy Gisselle

Baby Hope is still in the NICU at the Capitol Medical Center. We were hit with our worst news yet, last night the doctor called us that Baby Hope might have BPD (bronchopulmonary dysplasia) This also means that Baby Hope will have to stay longer in the respirator. More than anything else, we desperately need your prayers for Baby Hope to overcome this. We are still waiting for the doctor to confirm this diagnosis as baby will still be observed. Thank you again and God Bless!

June 9, 2004 9pm

After calling the hospital, we found out that they had to put back the respirator. They had to put it back because she still had a lot of secretions in her lungs. Please pray for her some more, that her lungs will be stronger still, and that the secretions stop.

Daddy Bong

June 9,2004 11am

To all who have expressed and sent their prayers and support,

Thank you very much for the help that you extended. I managed to get a photo of Hope. We'll try to update on what is happening to her.

Yesterday, the doctors removed the respirator. So last night and today will be the observation period to check if she can comfortably breathe on her own. Please pray that her lungs will be strong so that she can breathe on her own.

God Bless!

Thanks,
Daddy Bong

Help needed

June 7, 2004

Dear friends, students and readers,

As most of you know, I got married to Gisselle Magcamit (former co-teacher and school mate (pisay ‘94) recently and last May 20, after only 6 ½ months of difficult pregnancy, she gave birth prematurely to a baby girl, whom we named Schezerade Hope. She only weighed 1lb and 7 oz and was 11in long at birth. As of now she’s still staying in the Neonatal Intensive Care Unit of Capitol Medical Center. She’s already 17 days old as of today. We have been truly blessed by the Lord because even if she’s still in an incubator, her condition has been stable since her birth. She has very good heart rate and there has been neither infection nor bleeding. She is also very active, always awake and constantly moving her long arms and legs. Another blessing is that a lot of people have been praying for her. There’s so many people supporting and giving us strength, especially my family and my wife’s family.

However, one of our major concerns is the finances. Because of the expenses we’ve had due to her hospitalization prior to delivery (she was bleeding and had to be hospitalized for 11 days, April 25 – May 5) and the delivery as well, our savings have been drained. Although our families have been helping us financially, we still ask friends and other relatives for any help they can extend. We don’t know until when our baby will stay in the hospital. But definitely she’ll be there for at least two months. We were recently given a partial billing (May 21 – June 3) which already amounted to P145,000.

We have already send emails to our friends and relatives and most have responded by sending us some financial help. Some are helping us getting in touch with some institutions. Some have offered to give us some supplies as it is one way to lessen the expenses, instead of getting them all in the hospital. Of course the hospital puts on a huge mark-up on these things so if some of you know where we can buy the following, (maybe at a discounted price pa!  ) or if some of you have access to these things, please let us know right away:

Supplies:
Disposable syringes ( 3, 10, 20, 50 cc)
Disposable needles
Disposable tuberculin syringes
Feeding Tube (Fr. 5, 40 cm)
Extension Tube (100cm)
Endotracheal Tube (2.0 or 2.5 Portex-Pedia)
Urinary Bag (pediatric)
Surgical Gloves (medium, latex)
Suction tips
Plain NSS (500 mL – Baxter)
Micropore (1”)
Gauze Sponge (4 x 4 x 10)
Alcohol
Diaper (new born)

Medicines/Solutions:
Meroperem
Meronem (500 mg vial)
Ventolin, neb (2.5 mg)
Aminophylline (10 mL)
Aminosterile (100 mL)
Isotonic Sodium Chloride (50 mL Hizon)
Calcium Gluconate B (10 ml, Braun)
Plain NSS (500 mL – Baxter)


(* I'm not sure if some of the stuff I listed here are specific brands. but if there are other brands (of the same med/supply) that you can obtain please let us know also.)

Any help that you can extend to us will be very much appreciated.

We are thankful that the Miriam community also have been very helpful- extending their prayers and financial help. We thank everyone who has been continuously praying for us and especially for our baby. We draw strength and courage from all of you. Please continue to pray for Schera (or Hope to a lot of people). Pray that her lungs would go stronger so she can be hooked off from the respirator soon. Also that her mucus secretions would decrease so her lungs will not have difficulty. Lastly, that there would be neither bleeding nor infection in any of her organs and that they all develop normally, especially her brain, lungs and eyes.

God Bless,
Bong, Gisselle and Schera

Bong- 09274649632
Gisselle -09174218642