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
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