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Saturday, March 10th

On Thursday we took Nathan to see the opthalmologist and it went well. She thinks he has good vision. However, she's giving him a diagnosis of cortical visual impairment as it's difficult to tell how his brain is processing the information.

Afterwards we had our appointment with Dr. McCombe, the neurosurgeon at Children's Hospital LA. We were interested in a second opinion and wanted to explore Children's Hospital. He said the shunt is working fine and at this time there's nothing that needs to be done.

We decided not to switch to Children's as there were a couple of things that we weren't happy about with Dr. McCombe. He emphasized that the best thing about all this is that Nathan's mutation is spontaneous, not inherited, so we can have lots of normal children. It felt like he was discarding Nathan's life due to his problems and we left feeling flattened.

Dr. Lazaref, Nathan's neurosurgeon at UCLA, has told us many times that he thinks Nathan is going to do very well and he gives us hope.

So we are going to stick with Dr. Lazaref in the future for any neurosurgical issues.

Other than that, things are very good and stable. We are going to enroll Nathan in a study at the NIH so they can study his genetic mutation and hopefully learn more about it so they can help other children in the future.

Again thanks for checking in and for your continued support and prayers.

Friday, March 2nd

Just a quick update to say Nathan is doing GREAT!

He's having a great time, we all call him Mr. Smiley. He's just a great little guy to have around.

His head control is getting a little bit better, we see him making an effort to hold up his head and we can see him trying! Yesterday I saw him reach for a bubble and it was the first time I saw him trying to grab something.

Other than that his health is great, and we're all just having a good time watching him grow and learn a tiny new thing any more.

Thank you for keeping our little miracle in your prayers. We are so grateful!

Tuesday, Feb 20th, 2007 - MIRACLES

I wanted to share with everyone a couple of very inspiring experiences.

Today we found out that baby Lincoln Carter got a heart!

We requested prayers for him some time ago, and the family has been praying and asking others to pray for many months.

Well this week he got a heart, he's already had surgery and is doing very very well.

This is amazing as the family was not sure if a heart would become available. They had already waited for over 5 months. So it's a miracle and we are so happy for them.

Check out his website here: Little Lincoln Carter

Also, yesterday, we met an inspiring person. His name is Tony La Reau, he is 13 years old and was diagnosed with alobar holoprosencephaly. Before I say more, here are some pictures:

Tony's parents were told Tony would not survive, would not walk, talk, or have a meaningful life.

In this case I think images speak louder than words.

I was completely blown away when I met Tony yesterday. He is a radiant, happy young man, he emanates joy and I enjoyed his company tremendously.

Tony and his family are an inspiration to us and gives us so much hope.

I just wanted to share some good news and again, prove the power of prayer.

As always, thank you for your prayers and support!

 

Thursday, Feb 8th 2007

Well another little miracle happened. When we got to the hospital last Friday things were very dire, they said it was very serious and were talking about all kinds of invasive procedures and another long hospitalization and multiple surgeries.

After we sent out the email, things changed. Saturday morning things were completely different, all of a sudden they were talking about letting us go because it was probably just a virus. Hmmm.

We came home late late Sunday and he's been doing great since. We're hoping he won't develop complications.

Thank you very much for your prayers and for another miracle.

Friday, Feb 2nd, 2007

Nathan was admitted today at UCLA and has been diagnosed with meningitis once again. We are waiting to find out if it's bacterial or viral.

If it's viral, we just have to wait it out. If it's bacterial, it's a repeat of the last time he was hospitalized.

Please please keep him in your prayers.

Thank you very much.

Friday, Jan 19th

As Nathan missed Xmas, we waited and celebrated his first Xmas on on Jan 19th. Everyone had a great time and he loved being the center of attention and getting lots of gifts. You can see photos of him here: Xmas Party

Monday, Jan 15th

We are home! Wohoo!

Today Nathan was discharged from the hospital, after a 23 day stay. He recovered marvelously from his 3rd surgery and is just happy as can be to be home.

Things got a bit rough at the end - they discovered he has CMV and weren't completely sure there is no more infection. So they discharged him but told us to keep a very close eye on him, and to let them know the minute he starts showing symptons of infection.

As difficult as it was to be at the hospital, it was a very powerful experience. Witnessing Nathan's strength and spirit was very inspiring, to see him happy and enjoying such adverse circumstances.

Also, we met some wonderful, inspiring people. It was hard to see so many children sick and suffering, but to see their strength and that of their families' really opened our hearts and helped us see what's important in life. All of our heart's were touched and changed from this experience.

We created a page where you can see all of Nathan's new friends and so you can pray for them too. You can view them here: Special Prayers

As always, we thank you for your support, prayers and for being there for us. We would really appreciate if you also keep these other children and families in your prayers. Thank you so much.

Sunday, Dec 31st

Happy New Year's! We want to wish everyone that stops by a wonderful New Year's.

We are all doing well and looking forward to the upcoming year.

Nathan is doing great...he had a very very rough couple of days as they couldn't get an IV in him and they spent 3 days poking and trying, poking and trying, until finally yesterday they were able to get a Central Intravenous Line in. He relapsed a little as he didn't get antibiotics for about 24hours, and was throwing up and not holding in fluids. But since the new line has been in, he's been getting his antibiotics and doing much much better.

He's definitely won everyone over at the UCLA Pediatric Intensive Care Unit.

We have him sit up and watch everyone, and he just smiles at everyone passing by and screams to grab their attention. This morning a group of doctors was doing rounds and he had them all playing and fussing over him. The doctor speaking even lost her train of thought as he caught her attention and smiled. It was so cute to see. All of the nurses fight to take care of him and when they do, they won't leave our side for a second :-) They just love playing with him and getting little shrieks of joy from him.

Even though we're in intensive care, it's been wonderful as it's the first time in 6 weeks that he feels good, so he's just such a happy boy.

Surgery has been postponed a few more days due to his relapse, so we're looking at possibly next Monday.

Thanks again for your prayers and support and we wish you the best during this final holiday of the year.

Best wishes, Marcela, Owen and Nathan Dorje.

Friday, Dec 29th

Nathan is recovering very well from his surgery. He was really groggy and out of it the day of the surgery, but he has been feeling very well the last couple of days and today he was already looking around, cooing at all the nurses, and having a good old time.

Yesterday was his 3rd day with a clean culture so it looks like the infection has cleared.

I asked around and apparently they do about 30 shunt surgeries a month at UCLA, and this is the first time in 4 years that they have a case with an infection. So he is the 1st in about 1500 patients to have an infection. How is that for bad luck.

Owen and I are considering relying on the lottery to pay the hospital bills...this baby has a way of beating the odds so we believe we can become millionaires ;-)

Seriously, he is doing well and as always people are shocked by how strong and alert he is, and by well he is doing.

We are now waiting to hear when they want to have the next surgery. We are hoping it's soon as we are all very ready to go home. After the next surgery we have to stay for an extra 2-3 days and then we should be able to go home.

Thanks again for all of your prayers and support as always.

Sunday, Dec 24th

Merry Xmas! I hope this holiday is bringing you lots of peace, love and joy.

Nathan's first xmas has been full of surprises. He got better after his last illness, then he got sick again last Sunday. He's been really really sick all week, and finally today the pediatrician sent us to the emergency room at UCLA.

Meningitis

Today they tapped his shunt and found that he has meningitis. They're not certain if it's viral or bacterial, but there is a greater likelihood that it's viral, which is good, as it's the least severe type.

Unfortunately, this means they probably will have to remove the shunt, replace it with an external shunt for a few days, then after the infection is cleared, they'll have to go in again and place a new shunt.

We were told we'll probably be here at least 7 days if not more. So it looks like we'll be spending New Year's here too.

Never a dull moment with Nathan Dorje Andrew.

We would really appreciate your prayers this week as he goes through all these procedures. His little body is being bombarded with antibiotics now but we're hoping this will clear up the infection.

Please pray for a speedy recovery and so they don't have to remove the shunt.

Thank you so very much for your prayers, and we hope you enjoy your holidays.

 

Monday, Dec 11th

Well we've had a very interesting few weeks. Last week Nathan got sick, and we were afraid he might've had a shunt infection. We rushed him to emergency and they ran a million and one tests to find that all he had was a virus. It was great news that he didn't have anything serious, but unfortunately he had to have a lot of medical stuff done to him to find that out. But we're very happy it wasn't serious.

He's been home for a week and he's been doing a lot better.

Visit to the Carter Center at Stanford

Today we had Nathan's visit to the Carter Center. He was evaluated by a psychologist and a neurologist. The psychologist was very happy with what she saw and said that his social and communication skills are on target for a 4 month old. He was in a great mood, flirting with everyone and just having a great old time.

Then the neurologists went over his MRI with us and explained what everything meant, what areas of the brain are fused, not fused, etc. They explained that apparently he does have his vision processing area, but it's pushed forward because of the dorsal cyst. They confirmed that the level of severity is somewhere between alobar and semi-lobar, as there is very little separation of the brain. They also explained that they don't expect his brain to expand considerably due to the shunt surgery, as the gray matter that he does have doesn't look compressed.

One thing that was pretty encouraging is that they told us a story of a girl who was evaluated when she was in high school due to behavioral problems. As part of the evaluations they did an MRI and discovered that she has semi-lobar holoprosencephaly. So it is possible for someone with this condition to have a relatively normal life. Generally the Carter Centers see the most seriously affected people, as those are the ones where something is obviously wrong.

The cause of Nathan's condition

We also recently found out that the reason Nathan has a brain malformation is that he has a genetic mutation. They don't think it's hereditary, but Owen and I are getting tested to confirm that. He has a mutation in the ZIC2 gene, which affected the development of his brain. This is something that happened in the 1st or 2nd week of gestation. I don't really know too much about it, and they didn't say too much about it at the Carter Center.

They did say it is the cause of fewer than 3% of cases of holoprosencephaly, so it's very very rare. Another thing we found out is that this is what explains why he doesn't have facial anomalies. Apparently when the brain malformation is caused by ZIC2 it affects the posterior part of the brain, which isn't related to the face. Unfortunately it indicates that in his case, the face does not predict the brain.

One other thing that they mentioned regarding ZIC2 is that generally people that have brain malformations due to this genetic mutation, do not have other health problems. Typically other organs are not impacted, just the brain. So genereally it means that he may have a better life expectancy. So even though he may have good health, it doesn't say anything about how much he will develop.

Development

In terms of development, we weren't given any new information. The neurologist at the Carter Center didn't say anything about whether he would be able to walk, talk, learn, etc. Again, they said it was a "wait and see" situation.

They suggested that we continue with Nathan's therapies, making sure he's receiving a lot of physical and occupational therapy. They suggested we learn sign language to help him communicate. Basically, the more therapy he undergoes, the more what he does have of his brain will be maximized.

Thanks

Thanks so much to everyone that has been praying for our precious boy, we are just so grateful. Your support is greatly appreciated.

 

Tuesday, November 28th

Yesterday we went to the pediatrician to have Nathan's stitches out. Both incisions look really good and he is healing great. He is back to his normal cooing, lovable self as if he hadn't undergone any major surgery.

One great thing that the pediatrician mentioned yesterday is that apparently he DOES have parts of his corpus callosum, which make a big difference for him. She said that most of the time, people with holoprosencephaly don't have the corpus callosum at all, and by having parts of it makes a big difference. It allows for some communication of what is separated of the left and right lobes. She told us that was very encouraging.

Another good thing about the shunt surgery is that he is starting to hold up his head a little more, which he couldn't do at all before.

Other than that, he's doing very well.

Thanks so much to everyone for keeping him in your prayers, and for all of your support. We are very grateful.

Sunday, November 19th

Well, we're back home - the operation was successful! He's a very brave, strong little guy. He didn't have any complications at all..and everybody that saw him in the Pediatric Intensive Care Unit couldn't believe he'd just had surgery!

The neurosurgeon that did the operation he said he had very high intra-cranial pressure. The normal pressure is between 3 and 5, and his was 10. He thinks that's one of the reason he was crying so much, as probably the pressure caused him headaches.

The shape of his head changed, and now we can finally see his fontanel. Before it wasn't noticeable as there was fluid build up, but now you can see the indentation and his pulse through the fontanel.

Once again, one of the doctors that saw him was shocked at how well he's doing. He came to us right after seeing the follow-up CT scan. He was like, it's almost like the scans can't be of this baby, as he's doing so well and looks so good. He was amazed at how he could see, hear, suck, move his limbs, track..he said usually when they see scans like that, the babies are very impaired. Instead Nathan is very alert and has good skills for his age.

So we are very happy to have him home.

Once again, we are very grateful for all of your prayers and thanks for all of you that were thinking about him this weekend. We couldn't get through this without you. Thank you.

Tuesday, November 14th

It's hard to believe how quickly time is passing! It feels like just yesterday we updated the site..but it's been 6 weeks! Thanks to those of you that have been keeping baby Nathan in your prayers, we really appreciate it. And thanks to those that have been checking in with us, you're very very kind.

Well, lots has happened in the last few weeks. Finally we were able to have the MRI on his brain, and Doctor Lazaref, the neurosurgeon, believes Nathan needs a shunt. He is going in for surgery on Friday, November 18th.

The MRI showed that Nathan does indeed have hydrocephalus, and additionally he has a cyst in his brain that needs to be drained.

Doctor Lazaref thinks that the increase pressure probably causes him pain and discomfort and he believes that's one of the reasons he cries so much.

The MRI confirmed the diagnosis of semi-lobar holoprosencephaly, with a bunch of other brain malformations such as agenesis of the corpus callosum, agenesis of the septum pellucidum, and the dorsal cyst. Additionally, he is missing a large portion of his brain. We are hoping that this is partially due to compression due to increased pressure, and we have been told that sometimes, after the shunt surgery, the brain expands.

If you want to look at pictures of his MRI, they are here: www.prayfornathan.org/mri-all.php You don't need to be a neurologist to see that he's brain is very malformed. Here's a picture of a normal brain, next to Nathan's brain:

However, every doctor we've talked to say it's difficult to look at a picture of the brain and say, this is what your child will and will not be able to do. They say the brain is extremely flexible so we need to give him every possible chance and let him be the one to tell us what he can and cannot do.

Every doctor has told us to expect delays, there's no question about that. But whether he will be able to walk, talk, learn, etc...only he can reveal to us over time.

His brain seems to be adapting well, as one of the things the doctor pointed out to us is that the part of the brain that is used to process vision is completely missing in Nathan. However, Nathan can see and respond to visual stimuli. So somehow, somewhere, his brain is processing this information.

Next month we have an appointment at the Carter Center in Stanford. They specialize in researching and helping children with holoprosencephaly. We will see many of their specialists and they will give us a report based on reviewing his MRI about what areas are most impacted and how he will be able to adapt to them.

Other than that, he's doing a lot better these days. The non-stop, all day crying has stopped, and now he cries like a normal fussy baby. He cries when he's bored, hungry, has a dirty diaper. Which is so wonderful as it was hard to see him crying and suffering all the time.

He is becoming more and more a distinct little person. He is very talkative and coos a lot. On Saturday November 11th we heard his first chuckle...he was laughing so much it was absolutely delightful. He makes very cute sounds when he's laughing, and he loves to smile. He is very curious about the world around him, and wants to check every sound and movement out. Also, he is starting to want to put everything into his mouth and we have gotten him little toys that he can grasp and bring to his mouth. Most of the time he misses, but that one time when it works, you should see the delight in his face!

He definitely got his mom's temper - he is very impatient, wants things now, and gets frustrated and angry quickly if he doesnt' get what he wants right away. He has a loud voice and makes his needs known :-)

His tone is still very high and he still arches quite intensely. It's very cute to watch him trying to get his thumb in his mouth, but the high tone makes his arms a bit stiff so he can't quite reach. But he spends hours trying, you can see him with a look of intensity trying very hard to get that hand in his mouth.

To help him with his tone he gets physical therapy once a week, and he gets massages twice every day.

He LOVES the water and he's got to be the cleanest little boy out there. He gets 30 to 45 min baths twice per day, and in the early afternoon he gets in the spa with Owen. He absolutely delights in water and always enjoys it.

Oh, and the latest is that he wont' take his morning nap unless he is being held. The moment you put him in his crib he wakes up crying. So now one of us has to go to sleep with him in the morning so he can sleep for more than a few minutes.

Although the results of the MRI were frightening, we are encouraged as he seems to be doing so well.

We really appreciate everyone's prayers and support, we just can't thank you enough.

Please keep us in your prayers on Friday and Saturday as we go into surgery. Although the doctor says it's fairly routine procedure, it's still very frightening as they will be drilling a hole in his skull and placing a foreign object in his brain. So please please keep him in your prayers.

THANK YOU SO MUCH, we are very grateful to all of you.

Sunday, October 1st

Well, we've had a few interesting days, not quite what we expected.

We arrived at UCLA Friday afternoon with our bags packed, expecting surgery, a stay in the hospital, etc. Instead, we got sent home within a few minutes. The doctor, Jorje Lazareff took one look at him and said, "why are you here?" We tried explaining about the hydrocephalus, the crankiness, the increase in head circumference...but he said, "this baby doesn't need an emergency surgery". He explained to us that if Nathan had hydrocephalus his head would be much larger and misshapen, the veins on his forehead would be bulging, and his fontanel would be hard. As he didn't have any of these indications, he didn't think it's hydrocephalus.

We told him about the diagnosis of holoprosencephaly, and he said that it's very hard to diagnose from an ultrasound, so it would be best to have an MRI before giving him a diagnosis.

Then, he gave us great news. He said, even if this baby does have holoprosencephaly, he is going to do great, probably have a normal life. He told us that brain damage usually reflects in the face, and as Nathan doesn't show facial malformations, he didn't think his condition is too severe. He kept repeating the word "normal" over and over again.

He then sent us home. They are arranging for him to have the MRI this week. Then we will have more clarity about what's going on with him.

When we got home on Friday, full of joy, we gave him one of his new medications. Soon after, he started screaming hysterically. He screamed almost non-stop all the way till 3pm Saturday. We were worried, so we took him to the pediatrician, who promptly sent us to the hospital. We arrived at the hospital but, by the time they checked him in, gave us a room, and all that, he was finally calming down.

As he calmed down almost 24 hours after we gave him the medication, we realized it was a bad reaction to the drug.

So instead of keeping him at the hospital and exposing him to hospital germs, we decided to take him home. It was kind of a renegade move, as the doctor reccommended for us to stay, so we had to sign a waiver saying we were acting against medical consent. But it seemed senseless to keep him there as he was doing much better and probably didn't really need to be there.

So we came home last night, and he was feeling a lot better.

It seems that whatever's been making him cry so much is starting to go away, as he's having more moments of peace and he's not crying so intensely all the time.

He's starting to coo more and more and he loves to look around and check things out. Every good moment he has brings us soo much joy, it's so nice to see him peaceful and happy.

Once we do the MRI we will post the results, hopefully sometime this week.

Thursday, Sept 28th - Hydrocephalus

Today we got the results of Nathan's tests last week, and they confirmed the diagnosis of Hydrocephalus. His head is enlarging too quickly, and there is a cyst in his brain that is increasing in size. The doctor was very concerned and wants us to see a Neurosurgeon tommorrow. She thinks they'll probably admit him for surgery right away, to place a shunt in his head. My understanding is that the shunt will drain excess fluid away from the brain.

The doctor thinks this might be what was causing Dorje so much pain, that there was probably a lot of pressure from the water against the brain, resulting in severe discomfort. He has continued to cry inconsolably and it's been over a month of him spending every waking moment screaming in pain. If this is the source of the pain, then we are grateful for the diagnosis, even if it means going through surgery, and we hope it helps him feel better.

They also said he has very severe acid reflux, another source of agony for the baby. The doctor prescribed 2 more medications (so he's now on Zantac, Prevacid, and Reglan) which she thinks will help him. Also, she referred us to a Pediatric Gastroenterologist to do further testing and to decide how to handle it.

Finally, he has a minor anomaly in his heart..I don't have the details of that, but she said that a part of his heart that should've closed at birth, didn't. The doctor doesn't think this will cause complications.

We will post later this week about how his surgery went. As always, we thank all of you for your prayers and ongoing support.

Sunday, Sept 17th

This week we saw Nathan's first smile! On Wed Sept 13th, he smiled and cooed at his grandma. It was very cute! He's starting to "wake up" a lot more to the world, he spends more time looking around and observing things, he is cooing a little bit, and is letting us know how much he loves to be held. We also discovered he likes having a hand on him while he sleeps. The last couple of days he seems to be doing better. We are giving him the Zantac, as well as a few other natural remedies: Glyconutrients, probiotics, and a special herbal tea given to him by a Korean doctor. We also took him for craniosacral therapy.

Also, we discovered how much he LOVES the water, he can be hollering with hunger, pain, fury...but the moment he feels the water, he relaxes and starts playing around. His two favorite things every day are his baths and massages. Every morning and evening he gets a bath and a massage, and he becomes a happy camper (at least for a few minutes :-)

Tuesday, Sept 12th

Our appointment with the pediatrician today was a little bit discouraging. Nathan is still crying a lot, and it's very hard to get him to calm down. He's not sleeping much as he wakes up crying. There doesn't seem to be much we can do to help him or calm him.

Dr. Feldman doesn't know why he's still crying inconsolably. She still thinks it might be the acid reflux, although the medication doesn't seem to be helping him much. We are going to take him to the hospital to do a test to determine if it is acid reflux or not.

She's also afraid the problem might be pressure from fluid in his brain. His head is growing too rapidly so she's afraid that might be part of the problem, plus she thinks he might be developing hydrocephaly. He is going to have another ultrasound of his head so the doctor can determine what's going on.

She did a physical on him and is also concerned about stiffness in his muscles. He pulls his head back a lot, which she says is due to incraesed muscle tone in his back. She reccommended physical therapy to help with the stiffness and so this doesn't become more of a problem. She thinks he might have some cerebral palsy, but it's hard to determine the extent.

As if all that's not enough, she's now concerned about his weight gain. He has gained too much too quickly. He is now weighin almost 13 pounds. He's almost doubled his weight in 1 month. She thinks it might be because he's not getting enough exercise due to the increased muscle tone.

Finally, she found a bit of a murmur in his heart. She wants us to have an electrocardiogram to check that.

So we are trying to stay positive. Doctor Feldman says many of these things we can work on. Physical therapy will do a lot to help him with the stifness and increased muscle tone. As for the rest, once she has the results of the tests, she will see what she can do for him.

Wednesday, September 6th - Acid Reflux

Nathan's had a rough week, he's been crying a lot and we just couldn't seem to do anything to calm him. We took him to the pediatrician again yesterday, and she thinks he might have acid reflux. She gave him a prescription for Zantac and we are hoping that will help him.

It seems this is part of Nathan's condition: http://hpe.stanford.edu/support/FAQ.html

It's been a rough few days and we are hoping the medication will help him.

Wednesday, August 30th

Well it's been 2 weeks and fortunately we have more good news. We had our first appointment with the opthalmologist, and she was delighted to find Nathan's vision intact. She examined his eyes, dilated his pupils, and found his retina and other eye structures functioning well.

She needs to continue checking him to determine if malformations in his brain will affect his vision, as sometimes the eye is perfect but the brain can't interpret the information. However, she is hopeful and seems to think everything works well for now, so she encouraged us and told us to hope for the best.

Other than that, we are just taking things a day at a time. For now he is a normal baby, and we are learning how to take care of him and what works for him.

We had an interesting experience with him the other day. We were driving home, and there was an accident on the freeway that had just happened. A car was on fire, and there were a couple of people on the ground on the freeway who were obviously injured. Nathan was sleeping in the car, but when we arrived near the accident scene, he woke up and started screaming. We couldn't get him to calm down, he just cried and cried for quite a long time after.

We think maybe he perceived the energy of the accident. We had never seen him cry that intensely, and he was inconsolable.

As the days go by we are realizing he is a very very sensitive person, he picks up people's energies very clearly and it affects him.

On another note, we are going to start with a child development therapist next week, someone is going to come twice per week to work with him. We are very excited.

Thank you for your continued prayers and for continuing to be involved in Nathan's life.

Wednesday, August 16th - First visit to the pediatrician

Today we went for baby Dorje's first check-up with the pediatrician. As the miracle continues to unfold, it turns out that the pediatrician we contacted (who is just down the street from us) is one of the few pediatricians that has experience treating children with this type of neurological problem. I don't know the details, but she spent a few years specializing in this field and trained at UCLA, where she did her residency. In other words, she's the PERFECT doctor to treat Nathan. We were really impressed with her knowledge and how she knew exactly what to do with Nathan and how to approach the situation.

But first, let me share some excellent news. She was shocked when she saw Nathan, and asked us how sure we were of his diagnosis. She said that she has seen hundreds of children with holoprosencephaly, and of all the children she's seen, she was impressed by how well he's doing. In her own words, "This is a special child." She said children with holoprosencephaly usually don't do as well as he's been doing, and she was just very very impressed. Doctor Feldman told us a story of a child whom she saw that was pretty much normal, just had a tiny problem controlling muscles in her left side. They did a CT scan on her brain to see if they could help her, and found a huge amount of problems and a very serious condition. However, she was a normal girl, leading a normal life, with an IQ of 130, and if they hadn't done the CT scan, they would've never known how serious her condition was. According to her, this shows that what we see through medical instruments doesn't always reflect on the outside, as it doesn't account for spirit. She gave us a lot of hope and thought that baby Dorje has a great chance of doing very well.

Already she gave us referrals to see other physicians so we can assemble the team of doctors that will be following Nathan. She also gave us more information regarding support services available and gave us a 50-page packet of information and resources. She was amazing!

We found out that she trained under the doctor that talked to us at UCLA, Doctor Barrett, and like her, she believes that with intervention and dedication Nathan can really thrive.

We have to go back for weekly appointments to check the circumference of his head to make sure it doesn't swell (due to excessive fluid), and she already scheduled the MRI and other tests for next month.

Owen, Nathan's grandma, and I walked out of the doctor's office glowing. It was incredible to see how amazed the doctor was and to hear someone of the medical profession saying how fortunate and strong this kid must be to be doing so well.

We feel so fortunate to be able to watch this miracle continue to unfold.

However, we won't stop asking you to keep baby Dorje in your prayers, we think everyone's prayers is what continues to help him. Again, we can't thank you enough.

We're going to continue posting pictures and updates if you want to stay in touch with baby Dorje's progress.

With Love,
Marcela & Owen

Tuesday, August 15th - Please Pray for Nathan - he still needs your help!

As we have learned more about Nathan's condition, we have realized how much he still needs everyone's prayers and support. His every breath is already a miracle, but to have a normal, healthy life, he needs more prayers.

Already he has beat the odds, but he has so many more to beat.

Nathan's condition is called: Semi-lobar Holoprosencephaly

Here are some stats that we found from emedicine:

Mortality/Morbidity: In general, holoprosencephaly results in substantial early morbidity and mortality with a significantly reduced survival. However, individual reports describe long-term survival in all forms of holoprosencephaly.

Patients with alobar holoprosencephaly have a survival rate of about 50% by 4-5 months of age and about 20% at 12 months of age. Isolated semilobar and lobar holoprosencephaly have empiric survival rates of about 50% to 12 months of age.

Recent data from the Carter Center for Brain Research in holoprosencephaly indicate that complication rates in surviving individuals are as follows:

Semilobar holoprosencephaly - Spasticity in 85%, pituitary/hypothalamic dysfunction (diabetes insipidus, hypogonadism, hypothyroidism) in 74%, hypotonia in 70%, seizures in 50%, choreoathetosis in 20%, ambulation in 10%, use of hands in 10%, and use of words in 10%.

So for Nathan to be able to walk, talk, and use his hands, he has only a 10% chance.

Please keep baby Dorje in your prayers. Right now his brain is still developing, so please pray that it will develop sufficiently for him to be able to have a normal life.

Already you have all been so kind, we have received so much support, so many emails from people praying and sending this fortunate baby so much love. I know this is the only reason he is alive now. So please keep him in your heart, please continue to pray for him, please help him through your good heart.

We will continue to post pictures and updates as baby Dorje grows.

For now, he is doing wonderfully, he is a delight to care for. He is a very peaceful baby, very curious and in tune with people around him. Every day with him is a miracle and a joy.

We can't express how deep our gratitude is for your continued love, prayers and support.

Friday, August 11th - Nathan's Statistics

This is from Owen:

I want to thank everyone for keeping us in your thoughts and prayers as it's been truly a rough month and a half for us.

It was quite a emotional roller coaster as we spent 2-3 hours before the cesarean deliberating with doctors over the resuscitation limits, and his post death procedures. There were about 12 people in the operating room with another 2 on emergency standby. After Nathan's birth, the Perinatologist left to tell our families the good news and had to 'fudge' the apgar score as the Neonatologist and others were so surprised that he came out healthy and breathing they didn't even stop to weigh him until requested by us.

Even after three days of testing Nathan along with many vials of blood drawn for a further bombardments of tests, he came out to be in perfectly normal health. After an ultrasound, the head neonatology at UCLA told us that his condition will only need extra stimuli throughout his first few years, and with extra care he will most likely turn out to living a long and normal life.

For those that play Warhammer, I thought I'd throw out the statistics on this "miracle baby" Correct me if I'm wrong:

- His condition is about 1 : 20,000 out of every birth. (0.00005)
- 1 : 200 make it through full term pregnancy alive. (0.005)
- less than 2% of those survive through the trauma of birth to their first breath. (0.02)
- less than 1% of those that survive come out without health complication which will allow them to live during their short hospital stay. (0.01)

Total odds = (0.00000000005) or 1 : 20,000,000,000 chance

Just for reference, California lottery Match 5 Plus Mega (Jackpot Win!) Odds = 1:41,416,353

When people ask us why the doctors put us through the trauma of telling us he would not survive for those 2 months, it's only from statistics that they base their ascensions, even though miracles do happen.

Again, thank everyone for keeping us in your thoughts and prayers as Nathan Dorje Andrew is a happy, 7lb. 9oz., 20inch completely well spoiled baby.

Owen Andrew

Thursday, August 10th

Nathan Dorje Andrew - Miracle Baby

I can't begin to tell you how joyful I am to be online today, thanking you for the miracle you made happen. Baby Dorje is alive, he's a beautiful, healthy baby boy, who completely beat all the odds. I have no doubt it was solely due to prayers that this baby is home today. So we thank you from the bottom of our hearts for this life you have helped to bring to this world.

So here's the story.

We got to the hospital on Monday, and about 2 hours before the surgery was scheduled, one of the doctors came to us to ask about death rituals and how much resuscitation we wanted. He told us that as the baby had less than 10% chance of survival, we had to be prepared.

Regardless of this, we stayed strong and I went to the operating room with a hopeful heart. Everything depended on how Nathan reacted as soon as he came out of the womb. The doctors didn't expect him to be able to breathe on his own, or to have normal functions.

So you can imagine my joy when I heard Owen say, "Oh my God, there's his head!"...and seconds later...WAHHHHHHHHHHH. I don't know who was crying louder, Nathan, Owen or me.

Everything baby Dorje has done so far has surpassed all expectations. One of the doctors at UCLA came to us yesterday and said, "You do realize that only 3% of these babies survive the transition from the womb to the world." And even after they survive, they are not expected to be able to do other things, such as feed, regulate their temperature, etc.

Nathan has passed every single test so far with flying colors, including his vision, hearing, and lots of other blood tests. He feeds like a champ, knew how to suckle from the first moment he was given to me, and has had no health problems at all so far.

He is, however, still diagnosed with developmental problems in his brain....Where the brain should've split into 2 hemispheres, it only partially formed, so some structures are missing and he is expected to have developmental delays.

However, with everything he's done so far, we wouldn't be shocked if he surprised us in this regard too!

The doctors believe that with lots of stimuli, physical therapy and early intervention, Nathan can have a normal life with an adult life span. He has done so well that now they're expecting surprises. What's unbelievable is that the initial prognosis was that, even if he survived, they didn't expect him to be able to do things like walk or talk.

We have a lot of work ahead of us. Already we have contacted the Regional Center and have started the process of getting a team of doctors ready to help treat Nathan. We were told by the neonatologist and by a neurologist that the sooner we interfere and start stimulating the development of his brain, the better his chances will be.

Although the doctors call it a surprise...I call it a miracle, the result of amazing people with good hearts who have been praying for him and sending him so much love.

I wish I could thank each of you personally, hug you, and tell you how much your prayers and support have meant. Since I can't, I ask you to imagine a big hug from all 3 of us: Owen, Nathan and Marcela.

This precious little boy wouldn't be in this world if it weren't for your prayers and support - THANK YOU.

Sunday, August 6th

Nathan is going to be born on Monday, Augst 7th. We are sooo excited (and scared).

After consulting with a neurologist, we decided not to wait for labor and to schedule a c-section. As baby Dorje will be full term on Monday, the neurologist reccommended having him so we can determine his needs and begin to treat them, instead of waiting and increasing the risk of potential complications.

Please keep us in your prayers on Monday as we beging the next stage of this journey.

Thursday, August 3rd

At today's appointment, the doctor measured the Nathan's head again, and unfortunately it has continued to increase, it's now at 36.5 cm's.

Also, there is an increase in amniotic fluid, which may indicate that the baby has difficulty swallowing, so there is a build-up of fluid. Although the doctor didn't mention this as a risk, I looked online and learned that this could present a problem: Polyhydramnios.

I'm 1 cm dilated and a little bit effaced, so labor could be starting soon. However, he said there's no way to tell when labor will begin, it could still be a little while.

The news isn't great this time around, but the plan is still the same - wait and pray.

Saturday, July 29th

Owen and I have decided to wait until I go into labor naturally. When I go into labor, we will go straight in for a c-section. As his head is already big, we don't want to put baby Dorje through unnecessary stress trying to fit through the birth canal.

We will post here and send an email when I go into labor so you can pray for us during that critical time.

Thank you.

Thursday, July 27th - Your prayers are working

For the first time, it wasn't all doom and gloom when we saw Dr. Tabsh.

The first time we saw him, he said that he didnt' think the baby would survive birth. Today, he said he thinks the baby will survive birth and we may even be able to take him home (!!). He said that the brain stem is intact, which is what regulates breathing and other basic functions. So he thinks baby Dorje will probably be born okay, would look okay, act okay..but the problem will be later, as the damage is to areas of the brain that affect higher level functioning. He hasn't changed the actual diagnosis, meaning he still sees severe brain damage. So the essential situation is still the same. The main difference was in Dorje's life expectancy, and in the doctor's attitude.

I was quite surprised as there was such a marked difference between the first assessment and today's assessment.

The main discussion was regarding the actual delivery. He prefers to induce the birth in the next 2-7 days, as baby Dorje's head is swollen and the more we wait, the less chance that we'll be able to have a vaginal delivery. Again, he said it's ultimately my choice whether I choose to induce early, wait for birth to start naturally, or schedule a c-section.

The strange thing is that he said that the measurement that he took last week of Dorje's head and today's measurement is not comparable. Last week he measured the head in general (it was 33 cm's), and today he measured the part of the head that is swollen (35 cm's). As he said they're not comparable, we can't tell the rate of growth, or swelling. This to me is a bit inconclusive. Regardless of the fact that the measurements aren't comparable, he still thinks the baby's head is already big and if it gets much bigger it just won't fit through the birth canal.

Owen and I are going to be discussing our options to decide what we think is best. We are leaning towards scheduling a c-section in order to put less stress on Dorje during the birth. The other question is when - we can schedule the delivery any time now, Nathan's already full term and could be born at any time.

I really feel that prayers are helping - there was such a huge difference between the doctor's prognosis 2 weeks ago and today's assessment.

So please continue to pray! Maybe next time we'll hear that the damage isn't as bad as he thought!!

And thank you so much for your support and prayers, we are so very grateful.

Thursday, July 20th

We saw Dr. Tabsh, a UCLA perinatologist and the doctor who is now handling the pregnancy and will be in charge during the delivery.

He gave us the results of some bloodwork and the amniocentesis. All the tests were negative. The fact that the amniocentesis was negative was a good sign, as it means that the baby doesn't have chromosomal abnormalities, which slighly increases his chances of survival.

Since all the other tests were negative, they haven't been able to establish a cause for this. They checked for different infections, like toxoplasmosis, which sometimes causes this problem, but this was not found in my blood.

The question, according to the doctor, is whether or not to induce the labor early. He is afraid that the baby's head will swell due to water in his brain. If his head swells, then he won't fit through the birth canal and this would force us into a c-section.

Dr. Tabsh prefers to avoid a c-section. From his point of view, the priority is the mother. Nathan's chances of survival are so slim that the doctor doesn't want to put me through a major surgery.

I disagreed with him. I don't see a c-section as a major surgery, nor am I afraid to have one. So if his head swells and our only option is a c-section, so be it. On Thursday, July 27th, we will measure the size of his head, compare it to the size last week, and see if his head really is swelling at a rapid pace.

My hope is to wait for a natural delivery, I want Nathan to stay in my womb for as long as possible. The longer he is, the longer he is alive, the longer we have to pray for him.