We've decided to rev up our blog again for one simple reason...we know that the prayers of the saints are powerful and effective!
One month ago, July 5, our second child, Bela Elizabeth Romaine Perez Speaks was born here in Long Beach. The pregnancy and delivery were normal. By day two Bela still hadn't peed so the Dr. kept her overnight, sent me home, and assured us we'd probably take her home the next day.
Eventually they had to insert a catheter and when they tested her urine they found that her platelets were too low. The Dr. said they would monitor her and her platelets would probably start to climb back up by themselves. Platelets are what make our blood clot. They should be between 150,000 and 400,000. Bela's were 105,000 at birth and kept dropping. Our Dr. brought a hematologist on board. For about2 weeks it was a waiting game. Her platelets dropped steadily but not dangerously so the Dr.s didn't want to do any invasive testing or treatment, yet.
Then they found her liver to be enlarged and the liver enzymes to be too high. The GI Dr. thought she could have a food allergy, so he put me on a strict diet omitting eggs, dairy, wheat, nuts, and soy. Her white blood cell count was too high. She got a urinary tract infection and was put on 2 antibiotics and an anti-fungal medication. Because of those she was taken off of food and given only pedialyte. That was for just a day. Then for about a week she was off all food and given nutrition through an IV.
AT this point she has a team of specialists (she's so high maintenance!) including the neonatologist, hematology, gastrointestinal, genetics, and infectious disease.
She was able to start feeding again a few days ago and by today is up to about 2 oz. of breast milk, which I'm pumping, at every feeding! She has just a few days more to finish out one more antibiotic. There is no more sign of infection at this point. The GI(gastrointestinal) Dr. came in to examine her today and said her liver levels/function is doing better and he doesn't think the problem is with her liver but is causing her liver to malfunction.
So what does all this mean? The Dr.'s still don't know. They have exhausted every test starting with the most common/least dangerous and everything has come up negative...all viruses, all infections, etc. They tested my blood for a common link but that came up negative as well. They even thought she may have a type of Down Syndrome called Mosaic Downs which doesn't show any outwardly physical characteristics of Downs. Finally, after exhausting other less invasive options, they decided to take a bone marrow biopsy. She did very well and didn't show any signs of having any pain afterwards.
We had a family meeting yesterday (7 of us including our church's pastor) with the social worker, hematology, nurse, GI and a hospital liaison. We were told that one genetic blood test from Bela showed some chromosome abnormalities that usually are found in leukemia. But the results from the bone marrow biopsy don't show the cells "acting like cells that have leukemia." Bone marrow is the inner part of the bone where blood is made, so since there's a problem with her blood, they figured they'd find a diagnosis in her bone marrow. They did find that the marrow is abnormal, but they don't know what the diagnosis is.
The hematologist thinks it may be an infection that they can't detect. There are thousands of viruses and infections that are undetectable. And to that I ask myself, How do you know of them if they are undetectable? Then there isn't anyway to treat them.
He also is leaning towards a metabolic disorder but hasn't been able to prove that. So we wait still. Yesterday her platelets were at zero, basically, and in the morning when the nurse opened her blanket to change her diaper, her heel stick where they took blood earlier for more testing was bleeding and she was covered in it and her blanket was all wet with it. So they gave her her 2nd transfusion of platelets(her first was the night before her biopsy to lessen the risk of bleeding with that). This morning her platelets were up to 90,000.
So the next steps are possibly...
1. Send the bone marrow biopsy to an outside lab for a 2nd opinion.
2. Do another biopsy taking from different parts of the body all at once. The first biopsy was taken only from one area and that one area may not have the answers. They think there could be leukemia in other parts. But we are believing God is healing her. Her pediatrician said in his 25 years of practice he's never seen a baby born with leukemia.
We have asked so many people to pray and we have been so blessed. We really can feel the prayers. There have been some extremely hard days with lots of tears, confusion, and fear. The emotions are all over the place. The last few days have been better. We have learned a ton, gotten closer to God and have prayed a lot more together. We are so blessed with such an amazing staff at Long Beach Memorial Miller Children's Hospital.
Bela has had some hemorrhaging in her eyes and cheeks.
Our main prayer requests now are, of course, a non-serious, non-life threatening diagnosis that is easily and quickly treatable, with no pain or discomfort for Bela. We are praying for a miracle, for Jesus to touch her body, to operate on her, and to give her what the medical profession calls "spontaneous remission", aka "We-can't-explain-it-her-body-just-grew-out-of-the-illness". We are praying for her platelet count to climb to a healthy number and stay there and that she won't have any complications again in the future, and that she can COME HOME WITH US SOON! I have been reminded of friends, brothers in Christ, all over the world, who are or who have suffered a similar trial , just like we are told about in the Bible. I have been reminded of what is important in life, to not take our health, or anything, for granted, and that to stress is unnecessary, but we are commanded to trust in Jesus, that Bela is a daughter of the King and she is in His hands.
We have been encouraged by such verses as these:
Isaiah 65:20~ "No longer shall an infant from there live but a few days, Nor an old man who has not fulfilled his days; For the child shall die one hundred years old."
Zephaniah 3:17~The Lord your God in your midst, The Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing."
Habakkuk 3:17~Though the fig tree may not blossom nor fruit be on the vines; Though the labor of the olive may fail, and the fields yield no food; though the flock may be cut off from the fold, and there be no herd in the stalls---YET I WILL REJOICE IN THE LORD, I will JOY in the God of my salvation."
1 Peter 5:6~ Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you. Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. "
2 Timothy 1:7~" For God has not given us a spirit of fear, but of power, of love and of a sound mind."
Many family members, including Santi, have been able to see her. Santi has been able to hold her, read books to her, and sing to her. Yesterday she smiled at him and he told her his favorite joke: "Knock knock, who's there, orange, orange who? orange you glad i didn't say banana?" The nurses loved that. The Dr.'s and nurses know that we are praying people and some of them have told us they're praying for Bela. There are two nurses that have been exceptional with us and they get to be her primary care nurses, so whenever they are scheduled to work they will work with Bela.
Everyday we hope for the diagnosis and are expectant that "today will be the day" that Bela is completely well.
We do praise God for His hand on her. We are very grateful that she didn't pee in the hospital. We would've brought her home and not known about any problems. On the outside, clinically,she seems normal.
We thank God for being with us through all of this and His faithfulness and promise to stay with us along the way.
One month ago, July 5, our second child, Bela Elizabeth Romaine Perez Speaks was born here in Long Beach. The pregnancy and delivery were normal. By day two Bela still hadn't peed so the Dr. kept her overnight, sent me home, and assured us we'd probably take her home the next day.
Eventually they had to insert a catheter and when they tested her urine they found that her platelets were too low. The Dr. said they would monitor her and her platelets would probably start to climb back up by themselves. Platelets are what make our blood clot. They should be between 150,000 and 400,000. Bela's were 105,000 at birth and kept dropping. Our Dr. brought a hematologist on board. For about2 weeks it was a waiting game. Her platelets dropped steadily but not dangerously so the Dr.s didn't want to do any invasive testing or treatment, yet.
Then they found her liver to be enlarged and the liver enzymes to be too high. The GI Dr. thought she could have a food allergy, so he put me on a strict diet omitting eggs, dairy, wheat, nuts, and soy. Her white blood cell count was too high. She got a urinary tract infection and was put on 2 antibiotics and an anti-fungal medication. Because of those she was taken off of food and given only pedialyte. That was for just a day. Then for about a week she was off all food and given nutrition through an IV.
AT this point she has a team of specialists (she's so high maintenance!) including the neonatologist, hematology, gastrointestinal, genetics, and infectious disease.
She was able to start feeding again a few days ago and by today is up to about 2 oz. of breast milk, which I'm pumping, at every feeding! She has just a few days more to finish out one more antibiotic. There is no more sign of infection at this point. The GI(gastrointestinal) Dr. came in to examine her today and said her liver levels/function is doing better and he doesn't think the problem is with her liver but is causing her liver to malfunction.
So what does all this mean? The Dr.'s still don't know. They have exhausted every test starting with the most common/least dangerous and everything has come up negative...all viruses, all infections, etc. They tested my blood for a common link but that came up negative as well. They even thought she may have a type of Down Syndrome called Mosaic Downs which doesn't show any outwardly physical characteristics of Downs. Finally, after exhausting other less invasive options, they decided to take a bone marrow biopsy. She did very well and didn't show any signs of having any pain afterwards.
We had a family meeting yesterday (7 of us including our church's pastor) with the social worker, hematology, nurse, GI and a hospital liaison. We were told that one genetic blood test from Bela showed some chromosome abnormalities that usually are found in leukemia. But the results from the bone marrow biopsy don't show the cells "acting like cells that have leukemia." Bone marrow is the inner part of the bone where blood is made, so since there's a problem with her blood, they figured they'd find a diagnosis in her bone marrow. They did find that the marrow is abnormal, but they don't know what the diagnosis is.
The hematologist thinks it may be an infection that they can't detect. There are thousands of viruses and infections that are undetectable. And to that I ask myself, How do you know of them if they are undetectable? Then there isn't anyway to treat them.
He also is leaning towards a metabolic disorder but hasn't been able to prove that. So we wait still. Yesterday her platelets were at zero, basically, and in the morning when the nurse opened her blanket to change her diaper, her heel stick where they took blood earlier for more testing was bleeding and she was covered in it and her blanket was all wet with it. So they gave her her 2nd transfusion of platelets(her first was the night before her biopsy to lessen the risk of bleeding with that). This morning her platelets were up to 90,000.
So the next steps are possibly...
1. Send the bone marrow biopsy to an outside lab for a 2nd opinion.
2. Do another biopsy taking from different parts of the body all at once. The first biopsy was taken only from one area and that one area may not have the answers. They think there could be leukemia in other parts. But we are believing God is healing her. Her pediatrician said in his 25 years of practice he's never seen a baby born with leukemia.
We have asked so many people to pray and we have been so blessed. We really can feel the prayers. There have been some extremely hard days with lots of tears, confusion, and fear. The emotions are all over the place. The last few days have been better. We have learned a ton, gotten closer to God and have prayed a lot more together. We are so blessed with such an amazing staff at Long Beach Memorial Miller Children's Hospital.
Bela has had some hemorrhaging in her eyes and cheeks.
Our main prayer requests now are, of course, a non-serious, non-life threatening diagnosis that is easily and quickly treatable, with no pain or discomfort for Bela. We are praying for a miracle, for Jesus to touch her body, to operate on her, and to give her what the medical profession calls "spontaneous remission", aka "We-can't-explain-it-her-body-just-grew-out-of-the-illness". We are praying for her platelet count to climb to a healthy number and stay there and that she won't have any complications again in the future, and that she can COME HOME WITH US SOON! I have been reminded of friends, brothers in Christ, all over the world, who are or who have suffered a similar trial , just like we are told about in the Bible. I have been reminded of what is important in life, to not take our health, or anything, for granted, and that to stress is unnecessary, but we are commanded to trust in Jesus, that Bela is a daughter of the King and she is in His hands.
We have been encouraged by such verses as these:
Isaiah 65:20~ "No longer shall an infant from there live but a few days, Nor an old man who has not fulfilled his days; For the child shall die one hundred years old."
Zephaniah 3:17~The Lord your God in your midst, The Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing."
Habakkuk 3:17~Though the fig tree may not blossom nor fruit be on the vines; Though the labor of the olive may fail, and the fields yield no food; though the flock may be cut off from the fold, and there be no herd in the stalls---YET I WILL REJOICE IN THE LORD, I will JOY in the God of my salvation."
1 Peter 5:6~ Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you. Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. "
2 Timothy 1:7~" For God has not given us a spirit of fear, but of power, of love and of a sound mind."
Many family members, including Santi, have been able to see her. Santi has been able to hold her, read books to her, and sing to her. Yesterday she smiled at him and he told her his favorite joke: "Knock knock, who's there, orange, orange who? orange you glad i didn't say banana?" The nurses loved that. The Dr.'s and nurses know that we are praying people and some of them have told us they're praying for Bela. There are two nurses that have been exceptional with us and they get to be her primary care nurses, so whenever they are scheduled to work they will work with Bela.
Everyday we hope for the diagnosis and are expectant that "today will be the day" that Bela is completely well.
We do praise God for His hand on her. We are very grateful that she didn't pee in the hospital. We would've brought her home and not known about any problems. On the outside, clinically,she seems normal.
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| Her first day...born 11:53am |
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| With my mom and Santi |
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| My sister Glenda and Santi |
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| Daddy and Bela |
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| Very proud papa |
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| Taking the baby for a walk |
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| This is exactly what Santi looked like at birth |
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| First bath |
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| Second week in the NICU |
So good to talk with you just now! Those are all such wonderful verses God has given you. Cling to them and anything He gives you, tenaciously! Love you!
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