Before I jump feet first into the bloggy waters of Oliver's life I would like to acknowledge that there are some members of our friends and family that have not received emails or detailed information regarding Mr. O's surprisingly difficult arrival onto planet Earth. In order to catch everyone up I am posting the two emails that George composed. One email was sent shortly after Oliver's birth and the other was an update sent at 7 months.
I considered posting heavily abridged versions of these emails since they are quite lengthy and contain a great deal of emotional and graphic content. But then I changed my mind. See... George spent the time pouring his heart and soul into these emails when I could not and if I were to share with you anything less it would diminish the importance these emails held for our family. If you find them difficult to read then you just might have a tiny taste of how difficult it has been to live it.
On the up side, once you continue past the emails it is pretty much good news all the way. While it is not always easy, life with Oliver is always exciting and challenging us to experience ourselves as greater people than we ever thought ourselves to be.
Monday, May 14, 2007
Best/Worst Week Ever aka The Story of Baby O (July 25, 2006)
The Not Very Short Story of Our Baby So Far
Hello friends, family and loved ones: This is a quick update on the birth and progress of our beautiful baby, Oliver, AKA The Vole. Some of you know parts of the story, some none, so here is the story up to this point.
We are shattered, sad, bewildered, confused - in addition Jill is recovering from an incredibly painful physical ordeal, which we will spare you the details of. As a result we apologize, but we haven't really spoken to anyone as we have been too heartbroken to connect. But thank you for the texts, they have been a lifeline.
Please bear with us for the long and painful telling, but its ultimately cathartic for us to get this down. And please bear with us if we don't want to repeat this story to each of you in turn. We really don't want to relive this again and again, despite the care and concern of all you lovely people, so we are providing you with the full details now, once, so we won't have to repeat ourselves. We appreciate your understanding as we right ourselves.
At 2:30am on Wednesday, July 13th, Jill went into labor and we headed off to the hospital. Jill was in incredible and unremitting pain and seemed to have consistent bleeding, nothing like the books that we had read, which alarmed us. But the staff at SF General were, for the most part, very accommodating and helpful. It was the longest most intense most emotional 33 hours of our lives. But at 11:17am on Thursday, July 14th 2006, our child, Oliver, who had up to now just been known by us as The Vole was born. We instantly knew we were in trouble.
Although he came out pink, he was surrounded by a team of doctors due to meconium that had been spotted in the amniotic fluid. This turned out to be the least of our problems as Oliver, refused to breathe. The doctors became increasingly urgent as his lifeless floppy body refused to respond to aspiration or the usual tests. The three minutes he was with us as I got to watch over his lifeless body before he was rushed at full speed to the intensive care area are without doubt the worst three minutes of my life.
Physicians and midwives came and went, no one knew what was wrong with him. After perhaps an hour we were told that apparently little Oliver had bled to being nearly dry. This is still a huge mystery. No internal bleeding was found and none of his blood was found in Jill's. There are a number of hypothesis, but none have been proved and at this stage none might be provable. Physically, other than blood loss he was a beautiful 7lb 12 oz baby, 19.5 inches long. There are links to pictures at the end of this message.
How sick he was was an utter horrifying surprise to everyone. They had measured his heart rate during labor and Jill had been for a check up on the Tuesday prior to labor and all indications was that this was a text-book strong healthy baby. As a result of the huge blood loss they finally transfused him with blood, but it took a long time in coming and as a result significant brain and other organ damage was seen as inevitable.
Oliver started to breathe, but with great difficulty due to the aspirated meconium and other probable organ damage. His breathing was fitful and intermittent. Later the pediatrician told us that the chance of his survival was greatly in question. We feared as much although didn't know at the time.
At 7pm on Friday the pediatrician shift changed, and the new doctor decided that SF General could not provide the level of respiratory care that Baby O looked like he might need. As such he was rushed to UCSF where they have a much higher level of intensive care. I travelled in the ambulance, Jill who was still physically incapacitated followed in another ambulance, in what seemed hours later. Of course if it could go wrong it did and even the ride over we had some initial problems with ambulance air/oxygen/nitric oxide supply and poor Oliver got cut off from air once again - although this time just for a minute or so, but again it was a very long minute indeed as the team scrambled to reestablish the equipment and his breathing.
There were no wards in the UCSF Intensive Care Nursery (ICN) so we stayed seven floors down and one hospital over in the liver transplant ward that night, sharing a room with an elder black lady, Ella, who turned out to be Gunsmoke fan and who listened to the show at full volume. Despite the cramped bed and loud room we fell into fitful sleep at about 1am Saturday after having made sure that Oliver was as comfortable as he could be with his dedicated guardian angel nurse Andrea, looking over him.
Olivers breathing was of such concern that they intubated him, ie pushed a breathing tube down into his tiny lungs with a respirator on the other end. Its hard to see your baby attached to so many tubes and wires, but these were keeping him going. We could reach out and touch him, and his tiny body trembled and shivered and his mouth continued to quiver. But already he was getting a bit grumpy and kept trying to pull the tube out of his mouth. We were heartened by his lack of wanting to be a good patient, but they gently sedated him for his own good.
We woke on Saturday to find that things were getting better. The respirator was turned down and Oliver decided that he would give this breathing thing a go. He was getting quite the hang of it much to everyones delight. He also started to open his eyes and make some eye contact with us, although he continued to tremor fairly consistently. The tremor in his mouth was abating.
Saturday, Ella moved to another ward, so we had a room to ourselves and never found out what happened to the Indians. Oliver pee'd so there was some hope that his kidneys would be OK. We had complete 24 hour access to The Vole, and would check in regularly to see how he was doing. Jill started to pump and her milk has come in wonderfully, she is now quite the regular milk cow.
Oliver was very docile, almost always asleep, didn't cry, but was starting to take control of hands and feet which was very heartening. He was doing so well that by very early Sunday morning they removed his breathing tube.
That meant on Sunday we could finally pick him up (we hadn't even been able to hold him until now) and kiss his sweet little pouty lips. For a guy who was semi-concious and not really in control of his faculties, he has a lot of character and expression. Jill got pulled into a bunch of conversations to do with her care which meant I got to hang out in a rocking chair for a few hours with Baby O on my bare chest, skin to skin. I told him a few stories. Let me tell you he's a tough audience. The slightest deviation in pacing or back story and he is out like a light. It's tough having a baby on you who has two or three IV's in him and a number of other tubes and lights and bells hanging off him, but despite this it was the most wonderful few hours of my life. Jill also got to hang out with him later. She was definitely on the mend and starting to recover from the various meds they had put her on, but still in significant pain.
We also found out that on Sunday Oliver was eligible for a research program sponsored by NIH and being run by UCSF that deals with babies with brain damage. There is a super fancy MRI machine that is available in only about four hospitals in the world and a guy who reads the scans who is apparently one of the top two guys in the country. To qualify a baby has to have an APGAR score of under 5. Oliver, clearly keen to get in and scare the bejesus out of us, scored 3 at minute one.
The MRI scan was due on Monday at 10am. We went to go see him being prepped and it was the most alert that we had seen him, eyes open, intermittent eye contact and the tremor getting less, the mouth tremor all but gone. Unfortunately he had to be completely still for his MRI so they had to sedate him again. At this point Oliver is outpunching Keith Richards for morphine consumption over a three day period. We couldn't be prouder - he really is going to settle right into living in the Haight, we can tell.
Post the MRI we saw Oliver again and he was pretty out of it, as you might expect. We went to change his diaper and he had pooped a huge amount of meconium. Again all good news. The doctors had run a bunch of ultrasounds on his head as well and there seem to be no cranial bleeding. In addition, all the poop implied that his liver and other organs were doing great, which was a huge relief.
Sunday we got moved to the same floor as Oliver which was a relief as we could now more easily wander down the corridor to hang out with him and then wander back to crash for a few minutes. Plus the nurses we got were used to dealing with grieving frightened parents and unlike the nurses on the ninth floor didn't keep coming in every few hours to tell us what a gift it was to have children and how healthy and hearty their own children were. Which was not helping us one little bit.
However we were still under the gun of being discharged as Jill was recovering well. Of course, as she was her typical self and being a complete trooper and not complaining they thought she was doing even better than she probably really was. They had told us Sunday morning they were going to kick us out. They told us Monday they were going to kick us out. The stress of not knowing and not wanting to leave Oliver was really weighing on us. But we camped out by his bedside in the West Wing (which is where the sickest babies of ICN go) so it was hard for them to evict us.
Olivers reflexes were coming along although were somewhat muted. On Tuesday we heard what we already knew deep in our hearts. Oliver had suffered brain damage. Although the degree of the damage was still not known. We also heard from the Pediatrician who had saved Olivers life (Colin Partridge) that perhaps Jill had suffered a placental abruption, where the placenta peels away from the uterus wall. That would explain the constant cramping and the bleeding and also gives a theory as to where the missing blood went, although not why he came out pink and went blue. Knowing this was preventable and that there was definite brain damage although not the extent really brought us to our knees. But fortunately, Oliver hadn't heard the news and decided to gulp down 25cc of milk against everyones expectations, which was fabulous. Unfortunately since then he has been a pokey eater, eating less and less and taking longer and longer - his follow through isn't the greatest and there is some debate as to whether this is his condition or a family trait. He also got promoted to the North Wing where the less sick ICN babies hang.
Wednesday we were told that the brain damage instead of being moderate, as we were told on Tuesday (on a scale of mild/moderate/severe) was actually mild - according to this supposed research guru Barkovich. Although overall his condition is moderate, again more in a bit.
A quick overview of the MRI. There are three parts to this diagnostic that make it fancy. 1) The standard mechanical part that looks for regular damage. What makes the UCSF site special is that they have an experimental tiny MRI Cage that goes around babies heads' that has been custom made for them by GE. In other hospitals and for most cases at UCSF they put babies in an MRI for regular big headed adults, but that reduces the signal to noise ratio and doesn't allow as crisp a reading. There are just three of these experimental cages in the world right now. 2) A test for diffusion. Nerves are covered by myelin which using the wiring analogy is the plastic insulated coating surrounding the nerves. Low myelin ie compromised insulation means high diffusion of nerve messages as the nerve fibers cross back and forth and that means slow reaction times which is bad. 3) A test for lactic build up. As cells are starved of oxygen lactic acid builds up, which is why your muscles ache after working out hard (so I've been told). By looking at the lactic level they can tell when the starvation occurred at up to nine days, all very CSI.
The MRI results we got back were, in reverse order a3) Lactic levels were normal. This means the starvation occurred more than nine days before the MRI ie more than a few days prior to birth. Either that or the study (experimental) is a load of cock. However the researchers didn't take kindly me calling into question their methods and techniques and suggesting there might be error into them. I need to consult Dr Google about this to find out more. This is yet another puzzling piece, if the loss occurred earlier why did Jill feel nothing, why did all the tests for heart rate and fetal distress come back negative. Why did O come out pink. Why don't you ever see baby pigeons? Lots of unanswered questions.
a2) Diffusion came back normal, ie nerve development is fine. This is pretty important (I think). My apologies for the ham-fisted knowledge of neuroscience (I know some of you are experts) but I'm just picking this up as I go. But apparently we have at our core gray (or if you are English grey) matter, thats our lizard brain stuff. Fight Flight the other F (fun). Then surrounding that there is a big layer of white matter. This is a the plugboard that allows different parts of the brain to talk to itself and the rest of the body. Then on top of that is more gray matter which is the cognitive bit that makes humans humans. So the plugboard seems to be in OK shape.
a1) Now the bad news. We have damage both at the core gray matter (lizard brain) and at the outer gray matter (human brain). Fortunately the damage is not in the occipital zone, so Oliver can see, hear and has a sense of touch. But it is in a region that affects cognitive abilities and reasoning etc. The damage at the core level might also be responsible for his lower body stiffness, he has too much "tone" in his thighs.
What does this ultimately mean. Only god knows, but it will mean a couple of things for sure. He will have some challenges with mobility. Its hard enough to crawl. If you can't bend your thighs, it gets much harder to propel yourself around. Is it overcomeable? Can you be trained and get OT to help you? Maybe and Yes. Again all to be determined. What about cognitive abilities, will he ever grasp math, will he ever be able to spell his name? Again we don't know. The designation for "mild" gives us hope, but who knows how that is arrived at. And remember 48 hours ago it was "moderate". Could it swing back to a bad situation? Possibly. Could it get better? Possibly. Could the Democrats ever field a viable candidate? Possibly. But sadly unlikely.
OK so to next steps for Baby O and for us and what you can do to help, and of course links.
Baby O He will get another fancy MRI (and yet more morphine, someone get that kid a guitar and recording contract) next Monday to see if those spots on his little noggin are getting bigger or smaller or are steady. He needs to learn to eat before he comes home. Right now its pretty discouraging. He is eating less and less and seems to have forgotten how to coordinate the suck and swallow. But the main doc on the ward has high hopes, and says it will take him some time but they have patience and space and want to get him up to speed. They are going to give him a fancy eeg brain scan soon to see if there are any seizure activities occurring. His dose of antibiotics for meconium aspiration is being dialed down and he should be off of that by the end of the week. Right now, he has a little yellow tube that runs up his nose and into his tummy. We offer him 60 cc of breast milk for half an hour every three hours. Whatever he doesn't eat gets poured into the tube and into his tummy. If worst comes to worst, they will put a little tube in his tummy so we can take him home. But we are really hoping to avoid that. We will keep you posted. But in the meantime, although he is a bit docile, he seems very happy. Not in pain. Wakes up to pout, smile, and look at us intermittently. Doesn't cry much. Isn't suffering seizures that we can detect currently (a major side effect of brain injury). He is, in short, a happy child as far as we can tell.
Us Jill is making physical strides in recovery although is still hurting, walking slow and has other expected physical ailments. She might also have the beginnings of a cold. As was noted earlier she is producing enough milk to impact commodity prices. Mentally we are both pretty shattered, as you might expect. And as Jill has to get up every few hours to pump milk which takes upwards of 40 minutes her sleep pattern is a disaster. Which would be expected with any new mother, but is generally counteracted by the reassuring knowledge of having your little tyke safe and sound in your arms.
What you can do. Most importantly, we want you to go home and hug your children. If you don't have one, then find a friends and hug them. We have been blown away by peoples immediate and unconditional offers of help and love and support. From the fabulous folks at my work, AlphaDetail, who sent us flowers during some of the bleakest moments, to the innumerable text messages of prayer and thought, the ongoing offers of help and visits. All have been wonderful. All have been overwhelming. You guys are incredibly special and dear to us. We definitely need you, but we don't know quite how yet.
Maybe a reference to a good place to get a massage, maybe a home cooked meal at some point. For right now, we are pretty much camped out at the Intensive Care Nursery, with occasional trips home to replenish. Please don't call us at the ICN as there are many many sick babies and its inappropriate to have the phone constantly ringing. And we are frankly sick of the whole story and don't need to perpetually relive it. Text messaging works as its immediate, quiet and concise. But again please don't take a tardy response personally. We are overwhelmed and our focus is on Oliver and the reports we get from the medical team there. And a little bit of self care from time to time.
When we finally get back into the social swing, we really appreciate your concern as to how to deal with this. We don't want to create this topic as a big no no as its important to us, evolving and fascinating. But we don't want it to be the only thing we talk about for 16 hours a day. We are likely to burst into tears for no apparent immediate reason. So please bear with us as we find our pace and balance and integrate this into our lives.
Links. More pictures of Oliver Valentine can be found here (yeah, every kid should have a middle name that they hate, and we didn't want to disappoint) http://www.flickr.com/photos/georgecorrigan/sets/72157594206126157/. To see descriptions, you need to click on each photo, slideshow hides the text. Note some photos were taken on my Treo, so the quality is a bit low. Also a lot of low light, non-flash shots - so a bit blurry.
More white papers about the MRI are available, but they are building out the website so not all the links seem to work. But you can check it out here http://babybrain.ucsf.edu/
We've tried to get to most people in our address book, but please feel free to forward this to anyone who wants to know what is going on and we have inadvertently missed.
Again, we thank you from the bottom of our hearts for the love and concern and outpouring we have received. We wouldn't have made it this far without you. We are still far from out of the woods. And as Oliver slowly progresses we are fully expecting it to be frustrating and painful in parts. But we know that with your support and good cheer his journey and our experience will also be rewarding and joyous and loving. Thank you for being part of his family and making him feel welcome and us feel supported.
Much love George and Jill
Hello friends, family and loved ones: This is a quick update on the birth and progress of our beautiful baby, Oliver, AKA The Vole. Some of you know parts of the story, some none, so here is the story up to this point.
We are shattered, sad, bewildered, confused - in addition Jill is recovering from an incredibly painful physical ordeal, which we will spare you the details of. As a result we apologize, but we haven't really spoken to anyone as we have been too heartbroken to connect. But thank you for the texts, they have been a lifeline.
Please bear with us for the long and painful telling, but its ultimately cathartic for us to get this down. And please bear with us if we don't want to repeat this story to each of you in turn. We really don't want to relive this again and again, despite the care and concern of all you lovely people, so we are providing you with the full details now, once, so we won't have to repeat ourselves. We appreciate your understanding as we right ourselves.
At 2:30am on Wednesday, July 13th, Jill went into labor and we headed off to the hospital. Jill was in incredible and unremitting pain and seemed to have consistent bleeding, nothing like the books that we had read, which alarmed us. But the staff at SF General were, for the most part, very accommodating and helpful. It was the longest most intense most emotional 33 hours of our lives. But at 11:17am on Thursday, July 14th 2006, our child, Oliver, who had up to now just been known by us as The Vole was born. We instantly knew we were in trouble.
Although he came out pink, he was surrounded by a team of doctors due to meconium that had been spotted in the amniotic fluid. This turned out to be the least of our problems as Oliver, refused to breathe. The doctors became increasingly urgent as his lifeless floppy body refused to respond to aspiration or the usual tests. The three minutes he was with us as I got to watch over his lifeless body before he was rushed at full speed to the intensive care area are without doubt the worst three minutes of my life.
Physicians and midwives came and went, no one knew what was wrong with him. After perhaps an hour we were told that apparently little Oliver had bled to being nearly dry. This is still a huge mystery. No internal bleeding was found and none of his blood was found in Jill's. There are a number of hypothesis, but none have been proved and at this stage none might be provable. Physically, other than blood loss he was a beautiful 7lb 12 oz baby, 19.5 inches long. There are links to pictures at the end of this message.
How sick he was was an utter horrifying surprise to everyone. They had measured his heart rate during labor and Jill had been for a check up on the Tuesday prior to labor and all indications was that this was a text-book strong healthy baby. As a result of the huge blood loss they finally transfused him with blood, but it took a long time in coming and as a result significant brain and other organ damage was seen as inevitable.
Oliver started to breathe, but with great difficulty due to the aspirated meconium and other probable organ damage. His breathing was fitful and intermittent. Later the pediatrician told us that the chance of his survival was greatly in question. We feared as much although didn't know at the time.
At 7pm on Friday the pediatrician shift changed, and the new doctor decided that SF General could not provide the level of respiratory care that Baby O looked like he might need. As such he was rushed to UCSF where they have a much higher level of intensive care. I travelled in the ambulance, Jill who was still physically incapacitated followed in another ambulance, in what seemed hours later. Of course if it could go wrong it did and even the ride over we had some initial problems with ambulance air/oxygen/nitric oxide supply and poor Oliver got cut off from air once again - although this time just for a minute or so, but again it was a very long minute indeed as the team scrambled to reestablish the equipment and his breathing.
There were no wards in the UCSF Intensive Care Nursery (ICN) so we stayed seven floors down and one hospital over in the liver transplant ward that night, sharing a room with an elder black lady, Ella, who turned out to be Gunsmoke fan and who listened to the show at full volume. Despite the cramped bed and loud room we fell into fitful sleep at about 1am Saturday after having made sure that Oliver was as comfortable as he could be with his dedicated guardian angel nurse Andrea, looking over him.
Olivers breathing was of such concern that they intubated him, ie pushed a breathing tube down into his tiny lungs with a respirator on the other end. Its hard to see your baby attached to so many tubes and wires, but these were keeping him going. We could reach out and touch him, and his tiny body trembled and shivered and his mouth continued to quiver. But already he was getting a bit grumpy and kept trying to pull the tube out of his mouth. We were heartened by his lack of wanting to be a good patient, but they gently sedated him for his own good.
We woke on Saturday to find that things were getting better. The respirator was turned down and Oliver decided that he would give this breathing thing a go. He was getting quite the hang of it much to everyones delight. He also started to open his eyes and make some eye contact with us, although he continued to tremor fairly consistently. The tremor in his mouth was abating.
Saturday, Ella moved to another ward, so we had a room to ourselves and never found out what happened to the Indians. Oliver pee'd so there was some hope that his kidneys would be OK. We had complete 24 hour access to The Vole, and would check in regularly to see how he was doing. Jill started to pump and her milk has come in wonderfully, she is now quite the regular milk cow.
Oliver was very docile, almost always asleep, didn't cry, but was starting to take control of hands and feet which was very heartening. He was doing so well that by very early Sunday morning they removed his breathing tube.
That meant on Sunday we could finally pick him up (we hadn't even been able to hold him until now) and kiss his sweet little pouty lips. For a guy who was semi-concious and not really in control of his faculties, he has a lot of character and expression. Jill got pulled into a bunch of conversations to do with her care which meant I got to hang out in a rocking chair for a few hours with Baby O on my bare chest, skin to skin. I told him a few stories. Let me tell you he's a tough audience. The slightest deviation in pacing or back story and he is out like a light. It's tough having a baby on you who has two or three IV's in him and a number of other tubes and lights and bells hanging off him, but despite this it was the most wonderful few hours of my life. Jill also got to hang out with him later. She was definitely on the mend and starting to recover from the various meds they had put her on, but still in significant pain.
We also found out that on Sunday Oliver was eligible for a research program sponsored by NIH and being run by UCSF that deals with babies with brain damage. There is a super fancy MRI machine that is available in only about four hospitals in the world and a guy who reads the scans who is apparently one of the top two guys in the country. To qualify a baby has to have an APGAR score of under 5. Oliver, clearly keen to get in and scare the bejesus out of us, scored 3 at minute one.
The MRI scan was due on Monday at 10am. We went to go see him being prepped and it was the most alert that we had seen him, eyes open, intermittent eye contact and the tremor getting less, the mouth tremor all but gone. Unfortunately he had to be completely still for his MRI so they had to sedate him again. At this point Oliver is outpunching Keith Richards for morphine consumption over a three day period. We couldn't be prouder - he really is going to settle right into living in the Haight, we can tell.
Post the MRI we saw Oliver again and he was pretty out of it, as you might expect. We went to change his diaper and he had pooped a huge amount of meconium. Again all good news. The doctors had run a bunch of ultrasounds on his head as well and there seem to be no cranial bleeding. In addition, all the poop implied that his liver and other organs were doing great, which was a huge relief.
Sunday we got moved to the same floor as Oliver which was a relief as we could now more easily wander down the corridor to hang out with him and then wander back to crash for a few minutes. Plus the nurses we got were used to dealing with grieving frightened parents and unlike the nurses on the ninth floor didn't keep coming in every few hours to tell us what a gift it was to have children and how healthy and hearty their own children were. Which was not helping us one little bit.
However we were still under the gun of being discharged as Jill was recovering well. Of course, as she was her typical self and being a complete trooper and not complaining they thought she was doing even better than she probably really was. They had told us Sunday morning they were going to kick us out. They told us Monday they were going to kick us out. The stress of not knowing and not wanting to leave Oliver was really weighing on us. But we camped out by his bedside in the West Wing (which is where the sickest babies of ICN go) so it was hard for them to evict us.
Olivers reflexes were coming along although were somewhat muted. On Tuesday we heard what we already knew deep in our hearts. Oliver had suffered brain damage. Although the degree of the damage was still not known. We also heard from the Pediatrician who had saved Olivers life (Colin Partridge) that perhaps Jill had suffered a placental abruption, where the placenta peels away from the uterus wall. That would explain the constant cramping and the bleeding and also gives a theory as to where the missing blood went, although not why he came out pink and went blue. Knowing this was preventable and that there was definite brain damage although not the extent really brought us to our knees. But fortunately, Oliver hadn't heard the news and decided to gulp down 25cc of milk against everyones expectations, which was fabulous. Unfortunately since then he has been a pokey eater, eating less and less and taking longer and longer - his follow through isn't the greatest and there is some debate as to whether this is his condition or a family trait. He also got promoted to the North Wing where the less sick ICN babies hang.
Wednesday we were told that the brain damage instead of being moderate, as we were told on Tuesday (on a scale of mild/moderate/severe) was actually mild - according to this supposed research guru Barkovich. Although overall his condition is moderate, again more in a bit.
A quick overview of the MRI. There are three parts to this diagnostic that make it fancy. 1) The standard mechanical part that looks for regular damage. What makes the UCSF site special is that they have an experimental tiny MRI Cage that goes around babies heads' that has been custom made for them by GE. In other hospitals and for most cases at UCSF they put babies in an MRI for regular big headed adults, but that reduces the signal to noise ratio and doesn't allow as crisp a reading. There are just three of these experimental cages in the world right now. 2) A test for diffusion. Nerves are covered by myelin which using the wiring analogy is the plastic insulated coating surrounding the nerves. Low myelin ie compromised insulation means high diffusion of nerve messages as the nerve fibers cross back and forth and that means slow reaction times which is bad. 3) A test for lactic build up. As cells are starved of oxygen lactic acid builds up, which is why your muscles ache after working out hard (so I've been told). By looking at the lactic level they can tell when the starvation occurred at up to nine days, all very CSI.
The MRI results we got back were, in reverse order a3) Lactic levels were normal. This means the starvation occurred more than nine days before the MRI ie more than a few days prior to birth. Either that or the study (experimental) is a load of cock. However the researchers didn't take kindly me calling into question their methods and techniques and suggesting there might be error into them. I need to consult Dr Google about this to find out more. This is yet another puzzling piece, if the loss occurred earlier why did Jill feel nothing, why did all the tests for heart rate and fetal distress come back negative. Why did O come out pink. Why don't you ever see baby pigeons? Lots of unanswered questions.
a2) Diffusion came back normal, ie nerve development is fine. This is pretty important (I think). My apologies for the ham-fisted knowledge of neuroscience (I know some of you are experts) but I'm just picking this up as I go. But apparently we have at our core gray (or if you are English grey) matter, thats our lizard brain stuff. Fight Flight the other F (fun). Then surrounding that there is a big layer of white matter. This is a the plugboard that allows different parts of the brain to talk to itself and the rest of the body. Then on top of that is more gray matter which is the cognitive bit that makes humans humans. So the plugboard seems to be in OK shape.
a1) Now the bad news. We have damage both at the core gray matter (lizard brain) and at the outer gray matter (human brain). Fortunately the damage is not in the occipital zone, so Oliver can see, hear and has a sense of touch. But it is in a region that affects cognitive abilities and reasoning etc. The damage at the core level might also be responsible for his lower body stiffness, he has too much "tone" in his thighs.
What does this ultimately mean. Only god knows, but it will mean a couple of things for sure. He will have some challenges with mobility. Its hard enough to crawl. If you can't bend your thighs, it gets much harder to propel yourself around. Is it overcomeable? Can you be trained and get OT to help you? Maybe and Yes. Again all to be determined. What about cognitive abilities, will he ever grasp math, will he ever be able to spell his name? Again we don't know. The designation for "mild" gives us hope, but who knows how that is arrived at. And remember 48 hours ago it was "moderate". Could it swing back to a bad situation? Possibly. Could it get better? Possibly. Could the Democrats ever field a viable candidate? Possibly. But sadly unlikely.
OK so to next steps for Baby O and for us and what you can do to help, and of course links.
Baby O He will get another fancy MRI (and yet more morphine, someone get that kid a guitar and recording contract) next Monday to see if those spots on his little noggin are getting bigger or smaller or are steady. He needs to learn to eat before he comes home. Right now its pretty discouraging. He is eating less and less and seems to have forgotten how to coordinate the suck and swallow. But the main doc on the ward has high hopes, and says it will take him some time but they have patience and space and want to get him up to speed. They are going to give him a fancy eeg brain scan soon to see if there are any seizure activities occurring. His dose of antibiotics for meconium aspiration is being dialed down and he should be off of that by the end of the week. Right now, he has a little yellow tube that runs up his nose and into his tummy. We offer him 60 cc of breast milk for half an hour every three hours. Whatever he doesn't eat gets poured into the tube and into his tummy. If worst comes to worst, they will put a little tube in his tummy so we can take him home. But we are really hoping to avoid that. We will keep you posted. But in the meantime, although he is a bit docile, he seems very happy. Not in pain. Wakes up to pout, smile, and look at us intermittently. Doesn't cry much. Isn't suffering seizures that we can detect currently (a major side effect of brain injury). He is, in short, a happy child as far as we can tell.
Us Jill is making physical strides in recovery although is still hurting, walking slow and has other expected physical ailments. She might also have the beginnings of a cold. As was noted earlier she is producing enough milk to impact commodity prices. Mentally we are both pretty shattered, as you might expect. And as Jill has to get up every few hours to pump milk which takes upwards of 40 minutes her sleep pattern is a disaster. Which would be expected with any new mother, but is generally counteracted by the reassuring knowledge of having your little tyke safe and sound in your arms.
What you can do. Most importantly, we want you to go home and hug your children. If you don't have one, then find a friends and hug them. We have been blown away by peoples immediate and unconditional offers of help and love and support. From the fabulous folks at my work, AlphaDetail, who sent us flowers during some of the bleakest moments, to the innumerable text messages of prayer and thought, the ongoing offers of help and visits. All have been wonderful. All have been overwhelming. You guys are incredibly special and dear to us. We definitely need you, but we don't know quite how yet.
Maybe a reference to a good place to get a massage, maybe a home cooked meal at some point. For right now, we are pretty much camped out at the Intensive Care Nursery, with occasional trips home to replenish. Please don't call us at the ICN as there are many many sick babies and its inappropriate to have the phone constantly ringing. And we are frankly sick of the whole story and don't need to perpetually relive it. Text messaging works as its immediate, quiet and concise. But again please don't take a tardy response personally. We are overwhelmed and our focus is on Oliver and the reports we get from the medical team there. And a little bit of self care from time to time.
When we finally get back into the social swing, we really appreciate your concern as to how to deal with this. We don't want to create this topic as a big no no as its important to us, evolving and fascinating. But we don't want it to be the only thing we talk about for 16 hours a day. We are likely to burst into tears for no apparent immediate reason. So please bear with us as we find our pace and balance and integrate this into our lives.
Links. More pictures of Oliver Valentine can be found here (yeah, every kid should have a middle name that they hate, and we didn't want to disappoint) http://www.flickr.com/photos/georgecorrigan/sets/72157594206126157/. To see descriptions, you need to click on each photo, slideshow hides the text. Note some photos were taken on my Treo, so the quality is a bit low. Also a lot of low light, non-flash shots - so a bit blurry.
More white papers about the MRI are available, but they are building out the website so not all the links seem to work. But you can check it out here http://babybrain.ucsf.edu/
We've tried to get to most people in our address book, but please feel free to forward this to anyone who wants to know what is going on and we have inadvertently missed.
Again, we thank you from the bottom of our hearts for the love and concern and outpouring we have received. We wouldn't have made it this far without you. We are still far from out of the woods. And as Oliver slowly progresses we are fully expecting it to be frustrating and painful in parts. But we know that with your support and good cheer his journey and our experience will also be rewarding and joyous and loving. Thank you for being part of his family and making him feel welcome and us feel supported.
Much love George and Jill
Oliver Valentine - An Update (March 4, 2007)
Thank You
So first things first. Thank you. Although 'Thank You' doesn't really seem to cover the gratitude I feel from the incredible response from the last email. We were in dire need, and to say that people came to our aid is a monumental understatement to the incredible outpouring of emotion, support, prayer, stories, gifts, phone calls, tears, hugs, love, food, understanding and compassion.
The incredible good karma you've created has made me feel more connected and human and loved than I could have dared to believe. You have carried us fully and unconditionally – as Dickens almost said, its been the worst of times but you've made it the best of times. Thank you.
Every touch has moved, inspired, encouraged or calmed me one way or another. I've received several hundred emails and I've got around to replying to about seven, for which I'm very sorry. I hope to get to them all in turn, but please know that every email, visit, phone call and text message has made a difference and has helped us through this really tough time. Thank you.
I know some of you offered up prayers and thought good stuff, and didn't bother with mere mortal communication. Don't worry, all that spiritual energy got through too and I appreciate you mightily beseeching the powers that be. Some prayers went out to the standard white males like Yahweh, Our Lord and L Ron Hubbard. But above and beyond that the Vole has had blessings (the hippies), incantations (the witches) , smudge sticks (the native Americans), crystals (the new agers) and whisky/tequila (the Catholics) sung, poured, rubbed and wafted either over him or ingested nearby.
Some believe in gods. Some in science. Some in leprechauns. Its great to know that whether there is a heaven, or a big rainbow with a pot of gold, or it all just goes dark at the end, you've got this kid covered. He's needed it. Thank you.
So is it working? Well yes. In parts.
The long journey home
And so to the update. When we last left him, our hero aka Oliver Valentine aka The Vole, was stuck at the hospital. Due to a hard birth, and a suspected placental abruption he had nearly bled to death and had suffered "moderate" brain damage to both motor and cognitive parts of his brain. Although Joe Lieberman might not know what 'moderate' means, the docs explained that the damage to his motor center was giving him very stiff body and limb tone which would limit his ability to crawl and probably prevent him from walking. The cognitive damage would be unassessable for a couple of years. It was cold comfort that Bush in the White House was proving half a brain isn't a limiting factor in America in the new millennium.
The most immediate issue was Oliver's eating, or rather lack thereof. The Vole had apparently over-heard that one never be too thin or too rich. Realizing he'd missed the San Francisco real estate boom due to his parents poor timing he decided to focus on his figure and was very coy about sucking down the breast milk Jill lovingly and painfully pumped for him. To bypass this fastidiousness the doctors placed a yellow feeding tube up his nose which pleased Oliver not at all and he dedicated his early coordination efforts to pulling the damn thing out.
The doctors, realizing this was a baby not easily thwarted, removed the tube but darkly warned that Oliver needed to chow down 60cc of milk every three hours or a feeding tube would have to be inserted directly into his little pink tummy. Suitably alarmed Jill and I set to coaxing Oliver to eat. We took shifts and stayed bedside with him 24 hours a day, teasing a tiny bottle past his pouty lips, disapproving gums and uncooperative tongue. At least Jill and I could trade off shifts, grabbing some sleep in hospital. Well I thought, it could always be worse.
And then suddenly it was.
Jill got very sick with a particularly nasty feverish flu, and was promptly banned from the hospital. She was exhausted and now forcibly separated from her child, a horrible position to be in. I was now on double duty at the hospital cycling back home every few hours to pick up breast milk and report on news and bring food to a distraught Jill. It was exhausting, but at least I had the sanctuary of my apartment to crash out in for a few hours now and then. And Oliver was starting to tentatively eat. Well I thought, it could always be worse.
And then suddenly it was.
Post diluvium
My upstairs neighbor, a fabulous guy with dreadful plumbing, lent his apartment to a couple from the UK who left a bath tap running. The first clue something was up was gallons of water suddenly pouring through my bedroom ceiling. My guess is that someone prayed to a Greek deity (as I said, the prayers have been eclectic) and it got routed to Poseidon whose answer to every problem involves water – its really not his fault; polytheocracy breeds domain specialization. If all you have is a hammer, every problem looks like a nail; but we'll get to Thor in a moment. Poseidon's bailiwick is of course all things aquatic, in this case waterfalls of Niagraean proportions. The water poured through light fixtures, out of switches, and down the walls. Paint started peeling off the ceiling and walls in massive clumps and in a little less than an hour my apartment became unlivable with the rotting smell of mould everywhere (yes that's the British spelling of mold, sorry some things just look better with U, plus when it comes to dark dank unlivable conditions, the British know a thing or too about that).
After beating a hasty retreat I called the landlord, who sent around Leo, a lanky 50 year old problem fixer with a moisture meter and a sledgehammer. Leo assured me it was fixable. 'Leave it with me' he said. 'You focus on the baby' I biked off to the hospital with the latest supply of warm breast milk turning my place over to Leo and his extensive experience. "Help yourself to the beer in the fridge" I said. Well I thought, it could always be worse.
And then suddenly it was.
When I got back to the apartment Leo had punched huge holes in the ceilings and walls of the different rooms ostensibly to assess damage and start the drying process. But Leo was more enthusiastic than prudent with his sledgehammer; Thor had decided to make an appearance after all. Leo/Thor (anag Hole Rot, go figure) neglected to put sheets over any of the furnishings or even mask the holes he was making, he had just stood in the middle of my apartment, a beer in one hand swinging his hammer with the other. Now most of my 1930s apartment was covered in a lung clogging dust that looked suspiciously like asbestos. Elsewhere the asbestos/dust had mixed with the brown mildewy water to form a rancid cement that adhered to musical instruments, bedding, furniture, clothes. "it's the worst case of damage I've ever seen in a non-carpeted place" he said nodding at the damage while helping himself to another beer from my fridge, "I've been doing this for 25 years". I couldn't help but reflect that in 25 years Leo/Thor must have destroyed more people's apartments than Hurricane Katrina. But all I said was "I think you've effectively fireproofed this place with all this asbestos". Before I could stop him he said "well it could always be worse" Right at that moment the wall that held the bracket that held my beautiful, mountain bike, gave way and wall, bracket and bike crashed to the floor. "Cheers" I said, and grabbed a beer.
Home again home again
Back at the hospital things were looking up. Even though Oliver was not chowing the full amount every three hours the doctors decided that he was essentially a well baby and should go home. Jill was now recovered sufficiently so we went together to the hospital to pick up Oliver. I had a nagging feeling that they had made a terrible mistake putting us in charge of a baby, shouldn't we know more? All they showed us was a video explaining baby CPR in which the first confusing step was to call out to your child "baby baby, are you OK?" But it was never explained what was considered a satisfactory response from a two week old baby.
So after two long weeks we finally walked out the hospital with our kid. Much to my amazement no alarms went off and no one chased after us demanding we return The Vole to a place where there were professionals. What sort of irresponsible behavior was this? Did they truly let everyone just waltz home with their baby armed with nothing more than a receiving blanket, diapers and rash cream. It was clearly madness bordering on negligence to put a baby in our charge but with any old lunatic allowed to raise a kid it did start to explain the messed up state of the world. Hopefully we could better than Britney.
We went back to Jill's apartment as they had now moved in a dozen fans and dehumidifiers into my apartment – the noise and moisture making my place feel like the main runway at Miami airport in July. I checked messages, and there were still none from the hospital demanding our return. "Well I'm glad that's over" I said "We won't be going back there for a while". I'm almost glad I didn't know how wrong I was going to be – otherwise I would have just broken down and cried right there.
The next few days were perfect. Jill and Oliver and I all curled up, not really sleeping, not really waking with a stream of visitors bringing well wishes and food and gifts for the boy. Day three at home we realized we were getting a little cabin fever, so I hoisted Oliver over my shoulder, a position he still seems to favor, and we headed for our local noodle house. Oliver had spent most of his life in a hospital so hearing the clatter of the kitchen calmed him – reminded him of the preceding two weeks chaos. To this day he is happier being up and out and about in places where there is noise and activity.
Beyond the Pale
At the end of the first week out, Oliver's third on the planet, we took him to the pediatrician for a standard check up. Our doctor wasn't there, so we got the stand-in med student, Tai. "He's kind of pale" we said. Looking at me Tai said "It looks like he got the Irish side of the family tree". "Can we get a blood count?" we asked. I asked this not only because he seemed Goth white, but also because his blood counts at the hospital had been kind of low. "No, we'll do that in a couple of weeks" she said. It seemed wrong, like quite a bit of the contradictory medical advice we had received to date, but once again we demurred. Once again we were wrong to.
I had a quick business trip the following week to New Jersey. I got on the plane on Tuesday, and when I got off 6 hours later my voicemail was filled with messages from Jill. She and Oliver were back in the ER. Jill had decided to take O in to the pediatrician to check on some goop that was in his eye that didn't seem to be clearing. Our main doctor, the fantastic Emily, took one look at him and ignoring the minor eye problem ordered immediate blood work while Jill waited. Oliver's red counts were so low the lab didn't believe it and redid the tests; technically Oliver should have been in a near coma. The shocking test results were confirmed, and Jill and Oliver were rushed back to the Intensive Care Nursery for an emergency infusion. I joined them the next day.
It turns out that Oliver suffers from a very rare, but very profound anemia. The major suspect, still not proven, is Diamond Blackfan Anemia, named after the two doctors that uncovered it. It is genetic, RPS-19 is implicated (whatever that means). Its rare about 50 babies a year get it, there are about 1000 people worldwide with the disease. There is no known cure. Oliver does not make red blood cells or rather he makes them but somehow they are on an early death cycle, so none make it into the blood stream. As such, to stay alive, Oliver needs to be transfused every three weeks or so. Each transfusion takes a day as they do a specialized match to make sure there are no blood reactions, and then they have to pump the red cells in slowly so as not to overstress his heart.
Whose line is it anyway?
About two months into his life Oliver had a very hard day when the doctors could not find a vein that they could use for the transfusion. A combination of a healthily fat baby, narrow blood starved veins, and Olivers small size meant that he had a miserable day where a series of half a dozen doctors each stuck four or five needles into him trying to hit a vein. Finally we begged the doctors to put a permanent intravenous line into Oliver to stop the incessant puncturing which was wildly distressing him, and us. The doctors placed a Broviac line which is a central line that has an entry point into the middle of his chest and runs up into the major veins in his neck. The good news is that the Broviac means an end to the heel sticks that they used every week to draw blood from his feet. Transfusions are also now painless. The bad news is that The Vole is no longer water proof, as he has a hole in his chest, so can not take an immersive bath, joining a long illustrious line of famously stinky Irish men (Dedalus claimed he took a bath once a month, whether he needed to or not, Bob Geldoff isn't much better). It's a shame as we found early on The Vole really likes thrashing around in water.
The biggest challenge is the dressing around the chest hole needs changing once a week. Friends know that I am more enthusiastic than precise when eating, and with Oliver the apple hasn't fallen far from the tree: as the applesauce can attest. Trying to keep a site sterile when its constantly being covered in food and saliva (Oliver's not mine, I hasten to add) is hard. When the site gets irritated Oliver always figures out how to get hold of the line and give it frustrated pull, but so far the line has held up amazingly well. The wound dressing is complex with at least half a dozen components to make it work, but Jill has figured it out and can now dress the site better than most of the nurses that come by to check on him.
There have been a few issues with the line nearly getting infected which have landed us back in hospital, one of which grounded us for a week of emergency antibiotic infusions. But generally we are getting into the swing of flushing his line once a day and changing the dressing weekly; although both our apartments look like a scene out of MASH as there are boxes of syringes, medicine vials, ointments and wound care patches everwhere.
The video montage bit where we go from week four to month seven
And so the months have been roaring by, he is now seven months old. And Oliver has been growing well, he's now over 15 and half pounds. The motor deficiencies that we were sternly warned about manifest themselves in a slight shake in his hands, but he is one strong and determined kid. The physical therapists who work with him repeatedly shake their head when they look at his progress and then at the medical charts. "It doesn't seem possible", they say admiringly, watching as he grunts and groans onto his knees and does a good imitation of starting to crawl. "If anything he's somewhat advanced, we need to slow him down". He may yet be a bit gimpy in his gait, but it seems almost assured that he will find a way to propel himself around. Its fortunate that he has a will of iron, even if he has relentlessly non-ferrous blood production.
We had an early on interaction with the neurologist who asked if we had noticed anything wrong with Oliver.
We said, "there's the anemia."
He said, "well other than the anemia."
"There's the limb stiffness", we ventured
He said, "other than the anemia and the limb stiffness."
"Well there's the reflux; he throws up quite a bit of food."
He said "Other than the anemia, the limb stiffness and the reflux, anything else wrong?"
"Well there's the tongue that seems to curl a bit, we're worried about speech and eating"
"OK other than the anemia, the limb stiffness, the reflux, the tongue curl, anything else?"
"Oh well other than that he's a perfect specimen!" we said somewhat exasperated.
Then he said ""Well its just that I think Oliver might be blind"
"Argghgghghghghghgh!!!!!!!!!!!"
Like much else we've been told by the doctors this turned out to be wrong. When he chooses to Oliver focuses in on people with a laser like intensity. He can coordinate picking up objects and most importantly, at least to him, putting them in his mouth. Cognitively its still hard to assess his level of processing, but he his babbling in a concerted manner, shows interest in his surroundings, loves his toys, is crazy about dogs and has a wonderful funny laugh that will melt your heart.
If you met this baby in the street you would be struck with what a beautiful, incredibly strong and alert boy he is, you would not guess at his history. You might also think, hey what's this baby doing in the street, is this one of Britney's kids?
Jill spends almost every waking moment time managing his trips to be transfused, participating in his physical therapy work, working with the neurologists, doing medical research on his conditions and running him to the pediatrician and the assorted specialists who are involved. Oliver is beyond a full-time job and Jill has taken it on cheerfully and is a fierce devoted advocate for her son. He owes a lot of his progress to her unflagging enthusiasm, faith and skill.
And my neighbor made a very generous donation that helped get the apartment painted and back to its former shape. Sadly that paint has once again peeled, and there are some ongoing remnants of the flood, but my place is now more livable for me than for mould, which wasn't the case for quite a long time.
Check Please
Between the emergency room visits, the transfusions, the birthing - Oliver is now a million dollar baby. And it is almost entirely picked up by Californias Medicaid program, Medi-Cal. We pay for some additional physical therapy work that we believe is helpful, but the state has picked up the tab for the MRIs, the blood, the ongoing PT work. We would be beyond bankrupt without this support. I keep waiting for the other shoe to drop and to get some astronomic bill in the post, so I make sure the car is stocked with a tank full of gas, a trunk full of diapers and a map to Mexico that avoids the major freeways. But so far so good – the Feds have not come knocking. I've been paying taxes for what seems like forever, and I'm generally peeved that I'm simply helping buy bombs for the military or paying for ineffective road repairs. Now I realize that a little of the money goes to helping the surprising number of babies that are in need. So I don't feel so bad about paying taxes any more. I want to especially thank those of you who are American tax payers for doing your part in keeping Oliver alive. Without your help, we couldn't do this – I hope that thought helps a bit come April.
To Infinity. And Beyond!
So whats next? The first thing is to confirm that this anemia is Diamond Blackfan. Oliver had a bone marrow biopsy a couple of weeks ago. Apparently the results are not due back for six months. I tried to point out that on CSI they can do genetic testing in less than an hour, including six commercial breaks and they always get their man. The hospital was not impressed. Apparently isolating the genes is time consuming and expensive. And given the rarity of the disease, lots of people all over the country and even the world want to do their own bit of double helix dicing and splicing on our boy. So six months it is.
Meanwhile Oliver will get transfused every three weeks or so until he is one year old. At that point they will give him small doses of steroids – although no one is quite sure how the drugs work on this disease. If you saw how strong this kid already is and have watched The Hulk you'll know that that giving him steroids seems to be asking for trouble. There's a 50/50 chance they'll work, and about a ten percent chance he'll get huge and green and run through San Francisco and have to be brought down by helicopters. If the steroids fail and he ducks the helicopters, we'll go back to transfusions. One day we may consider a bone marrow transplant, although transplants are seen as very risky/expensive/painful so are currently being down played as an option.
So what is Oliver's prognosis? Unfortunately not great. Life expectancy for DBA kids is somewhere between twenty to forty years old. It turns out that all those transfusions are hard on the body. The very iron you need turns out to slowly kill your organs when you get it transfused, which if you can't resist puns and play fast and loose with definitions (yeah I'm talking to you Alanis Morrisette), might be described as iron-ic. Other risk factors include increased incidence of leukemia and cancer as the mixing of the bloods mess up your chemistry and to add insult to injury the disease also precludes chemo from being an option for cancer treatment.
When the going gets tough, the tough get philosophical
There are a few reasons to be cheerful here. First and most importantly the medical community have been very wrong on this boy several times before, so the racing certainty is that this prognosis is wrong too. Second, the technology is getting better every day and who knows what they will be able to cure in twenty years, twenty years ago it seems they were practically using leeches. And third with such a small sample of people with this disease (the DBA registry is 420 kids) no one really knows much about it - the chance of being an outlier is pretty good. Of course that could break either way, but this kid is pretty determined so I'd bet he'll be on the right side of the bell curve.
But having said that I don't want define Oliver's happiness and success in life on him beating the not inconsiderable odds. We all know it's the quality of the life not the length of it that makes it worth living. Sometimes we forget, but I'm lucky to have Oliver there to remind me about what's important. I hope that in whatever time Oliver has with us he will pack a lot of living in.
People are of course the most important element in any life and I've been extremely lucky to find amazing and exceptional people. Because you are getting this overly long note you are one of those exceptional people and a friend of mine and so in Oliver's life. (nb and if you didn't get this note either directly or in the first tranche, please don't take umbrage, you are still in the gang. My address book is not quite as complete as it could be, and my systems aren't set up for large email sends - my email admin ability is no reflection on friendship. This is also to say, if you know someone who didn't get this note and you know should have, feel free to pass the message along). My exceptional friends are the largest gift I have for The Vole. Thank you for being part of that treasure. Some of you I see regularly, some of you I haven't seen for a long while but I hope that our paths will cross again and you will have a chance to say hi, and visit with him – even if it's for a little while. Your presence in his life, even those who are remote, gives Oliver a very rich life. I also hope that I can encourage Oliver to live fearlessly and to follow whatever dreams he may have. It is always important to appreciate each day, quadrupley so, when you have, perhaps, four times fewer of them than most of us. I'm hoping I can provide a life for him where he will have the opportunity to travel a little and see this wondrous and diverse world that we live in. I know that some of you have donated to a fund for him to help him grasp whatever opportunities might come his way. Thank you for enabling his life this way. All you need is love. But a little cash certainly helps, I think John if not Yoko would agree.
All of that is of course the future, and unwritten. For right now Jill and I have our hands full with our beautiful, willful, unique child. Of course neither of us anticipated the severity of issues he would have, but even with that we feel blessed. He's a cool kid, a blast to be around, a little dynamo of seemingly endless energy that needs almost no sleep to fully recharge. Every day he does something that surprises us, amazes us, delights us or scares the bejesus out of us. And we wouldn't trade that for the world. He is family and loved fiercely and absolutely.
Run on the Bank
I would ask that if you would like to help, that at some point, if you are able, you give a pint of blood to your local blood bank. Oliver would be dead by now if not for the selfless blood donations of others. These angels we cannot thank directly because we don't know who they are, but they make possible each day with our son.
We are taxing the system mightily as we continue to consume a considerable amount of blood. I would love to know that we were helping replace the blood we take so that other parents can also have the opportunity to watch their children grow, so that others aren't deprived by our urgent ongoing incessant need. I have to confess, the benefit of blood drives always seemed abstract to me. I knew they were a good thing to do, but where does the blood go, is it really that useful? When you meet Oliver you will see the benefit is both immediate and vital.
So in brief…
A picture is worth a thousand words, at this point we are nearly five pictures in – thank you for your patience. If you would like to keep up with Oliver in a more concise manner and see what is going on in his life, please check in at www.flickr.com/photos/georgecor
And so that's it for now. You know as much as we do. Hug your loved ones. And hug yourself too. Its easy to take for granted this thing called life. When you see how precarious it can be you realize how precious it is. You are precious and loved and your presence here is nothing short of a miracle. Celebrate that. I know I do.
Much love from all of us here.
George, Jill and of course Oliver Valentine.
Ps late breaking news, through a generous gift OliverValentine now has his own domain at www.OliverValentine.com. Right now there is just a link to Flickr, but we'll link other info into that as we get it.
10 Months Today!
Oliver turned 10 months today. Just how that happened I am not sure. One moment he is my tiny baby unable to hold the weight of his own head and the next he is grown out of most of his clothes, crawling faster than I can keep up with him, seeking out vertical challenges, and is generally tearing the place up. I couldn't be more pleased. If there is one thing that I can say for a fact about Oliver it is he has an indomitable will to thrive.
We spent the day today in the hematology clinic for a scheduled transfusion. Oliver is typically transfused about every 21-23 days. But for some reason we have gone a full 5 weeks since the last one. I look forward to discussing this with his doctor. I hesitate to read too much into it before I have more information, but the implications are exciting. I'll write more about this when the picture becomes more clear.
Thankfully, the family of another infant patient at the clinic donated a pack n' play for general use. I couldn't possible hold him for the 7 1/2 hours we spent there today. He surprised me by recognizing the jiggly toys attached to the netting. I hadn't really expected him to get happy when he saw he was going in there. Off he zoomed to the side where he could bat the wings of the butterfly to his hearts content. He lasted much longer than I thought he might -- until tiredness set in. His morning nap was missed and the 40 minutes of shut eye he did eventually get was only just enough to make him a bit cranky.
But, even in the face of the crankies, Oliver has this amazing ability to turn it off if he thinks he is in a good position to do some major flirting. This includes spitting raspberries and grunting "heh, heh, heh" until the target turns to face him and then boom! he hits them with his biggest smile and squeeze of the eyes shut with a little cock of the head to the left. It's a winner every time. This kid got a double hit of flirting DNA and it shows.
We spent the day today in the hematology clinic for a scheduled transfusion. Oliver is typically transfused about every 21-23 days. But for some reason we have gone a full 5 weeks since the last one. I look forward to discussing this with his doctor. I hesitate to read too much into it before I have more information, but the implications are exciting. I'll write more about this when the picture becomes more clear.
Thankfully, the family of another infant patient at the clinic donated a pack n' play for general use. I couldn't possible hold him for the 7 1/2 hours we spent there today. He surprised me by recognizing the jiggly toys attached to the netting. I hadn't really expected him to get happy when he saw he was going in there. Off he zoomed to the side where he could bat the wings of the butterfly to his hearts content. He lasted much longer than I thought he might -- until tiredness set in. His morning nap was missed and the 40 minutes of shut eye he did eventually get was only just enough to make him a bit cranky.
But, even in the face of the crankies, Oliver has this amazing ability to turn it off if he thinks he is in a good position to do some major flirting. This includes spitting raspberries and grunting "heh, heh, heh" until the target turns to face him and then boom! he hits them with his biggest smile and squeeze of the eyes shut with a little cock of the head to the left. It's a winner every time. This kid got a double hit of flirting DNA and it shows.
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