August 31, 2010 Update:
It has been a while since we updated on my little monkey, and I'm all a-flutter with good news. First, though, I wanted to mention that it is Craniofacial awareness month. Also, NY Yankee catcher, Jorge Posada, and his phenomenal wife Laura, are writing a book about their son's experience with craniosynostosis. They are the founders of the Jorge Posada Foundation, which does many great things for kids with cranio. They're also co-sponsoring our Signing Time concert in Seattle, so please go check them out.
Anyway, we took the little dude in to Doernbecher to see the developmental pediatrician. Last time we were there, we were given the phrase "global developmental delays." It was a rough appointment. This time, he still didn't really want to play with them in their little room, but he did stack blocks, do the puzzle-thing and point to the kitty cat. Yeah, he can do that now. He also showed off this trick every time anyone said a number:
At 32 months of age, he functions at a 21 month old level, we're told, even
with all of his signing and new skills. He's still behind, but at least he's
making progress. And who knows, he may catch up. Rorysaurus did. This is
her, at the same age, reading What's Wrong, Little Pookie? with me:
This is Little Monkey's take:
He's grown a pinch, too. He's 34 inches tall, which is half an inch up from last time, on track at 3rd percentile. He's also 28.5 lbs, so he's gained there, too, and is hovering around the 10th percentile. The head is the same. Now, we just have to find him a preschool!
May 29, 2010 Update:
Alright, don't get too excited, but young Mr. monkey has gained .75 lbs and and 1.5 inches since his December visit with the endocrinologist! She'd put him on a low dose of thyroid supplement, and he's now growing only slightly less quickly than any other kid his age (in short, he's not catching up, but he's not getting left behind so quickly, either).
Yay! Let's hope the progress continues.
March 14, 2010 Update:
Well, after another round of specialists, a brain scan and a heart-ultrasound for my son, along with various blood tests and questionnaires, we are...
...still at square one. ::sigh::
He's small, a little slow, and no one knows why. Poor baby. He's got some new endocrine panels coming up (to check his levels after we started the thyroid pill), another appointment with the geneticist, and he gets to see a new opthamologist as well.
At least he is doing well with his speech pathologist. She's got us doing some website work with him at Starfall, and he's very good with his repetition. Also, his signing is getting better, as he can now ask for Signing Time:
My son has turned two, and I just can't believe it. Especially since he still looks just like he did at one, I have such a hard time seeing him as a two year old. He still seems like such a baby to me.
(I apologize for the long break between posts, but nothing really has changed when it comes to him. We've relocated to a new city, and he is the same height and weight he was as a ten month old. He's started Early Intervention services for his delays (global, but focusing on his eating, gross and fine motor, cognitive and communicative delays and his low muscle tone. Without the magic that Eliesha Lovell at Therapy Solutions for Kids does for him twice a month, I don't know where we'd be.)
HOWEVER, my "baby" can now eat just about anything you put in front of him (excepting meat and veggies, which he chokes on). He regularly eats two bananas and two granola bars and half an apple at breakfast. He even stole the apple I got in my stocking, and tore into it on Christmas morning:
He also has taken to Signing Time, a program designed to teach children American Sign Language vocabulary so that they can better communicate with their parents and caregivers. He now has signs for MILK, MORE, FOOD, SIGNING, APPLE, PLEASE and BABY, and he can say our names, "mas", "banana", "night-night", "good job" and "uh-oh!" I can't stress enough how effective Signing Time has been for our kids (it has been enough that I have actually registered to teach a few classes of it).
So much good news. We even got in to see an endocrinologist at Doernbecher Children's Hospital in SW Portland, and we should be getting his hormone levels back in a week or so. However, a few days ago we went to Doernbecher's via the aerial tram (sky buckets!!!) up the hill to the hospital, and it was much better than trying to park up there. No joke, you park at the waterfront, hop in this thing, and can head up the mountain for cheap (roundtrip is $4):
My monkey-son loved the tram, yelping "Whee!" the whole way across. Then, we waited nearly 2 hours to be seen.
The cardiology group didn't have his records from Oakland, but I very nicely explained that he had a bicuspid aortic valve and a systolic murmur. They were very nice, and very surprised that I knew all of that, and all the nurses and docs fell in love with my rosy-cheeked angel boy. One tech did his EKG, and we were ready to head on out the door to come back again in 6 months for an Echo. "Ummm," the doctor started...
"I know that face," I thought. "I hate this part". Long story short, they're doing that "Well, it doesn't NECESSARILY mean anything, but could you come in for more tests?" stuff. They did not like something in his EKG, didn't tell me what, but he's going in for a heart ultrasound in early January. They'll let us just do it in clinic when we get his endocrinology results, but they're going to sedate him to do it this time (which bodes badly, since that generally means a much, much longer Echo). No idea hen that will be, but I have a feeling we'll be getting to know Doernbecher as well as we know CHoO!
Can't this kid EVER catch a break?
So, the first one that was ordered was too large (looked like the poor kid had a colander on his head) but the second one is here, and it is wonderful. Here he is, grinning away (as usual):
A good thing, too, as he's started to crawl AND to cruise from person to person as if he's in any way allowed to be mobile. Seriously, the thought of him clanging that HUGE soft spot into anything sharp or hard, or of Rory catching him with a sharp elbow or toy...anyway, the helmet is wonderful.
He's also got FIVE teeth and is cutting a sixth, so he's been grumpy and tired and nursing ALL THE TIME, but he's still loving and cuddly, just very, very needy.
After Karen and her lovely daughter came to visit in the ICU, Julian started acting like he was in more and more pain. For about half the time he was awake, he was smiley and interactive, and had long conversations with "Fire Bear" (one of the toys brought to us by the Oakland fire department).
During these periods, we managed to bring Rory back in to see him, and she had a great time visiting in her surgeon's scrubs:
Julian was glad to see his sister and even batted keys for his Papa:
Poor little guy then got very, very fussy, and so I held him until his drugs kicked back in.
Pablo took Rory out to the little kids' play area and let her run around before heading home. Seriously, is this a GREAT hospital or what?
I had to stay with my monkey baby because he wasn't eating from the bottle anymore, so after a few hours napping while Godmom and/or Pablo watched at bedside, I had to be with the cute little guy. He was waking every two hours, refusing a bottle, craving his Morphine, and having a very rough time. The nurses, fantastic and wonderful women that they were, helped me figure out why he was in more pain than the last time. Turns out, instead of Morphine and Tylenol with Codeine, he'd just been getting regular infant Tylenol. Orders were written for Ty-Co, and upon receiving his first dose, Julian tore out his IV (which was only being used for the morphine at that point anyway). The nurses and I decided not to put the IV back in right away and to see if the Ty-Co worked for his pain, in which case he'd be done with his IV, and would only have his O2 monitor and his heart stickies on. The oral meds worked, and he was able to avoid another needle stick, even at his most swollen:
Almost immediately after the oral meds had started, they moved us to the floor (on Friday morning). He skipped the annex of the ICU this time (the quiet side) and went straight up a whole day earlier. Then, up there, he made lots and lots of friends with student nurses, including this guy who said no one would ever believe he'd been holding a baby:
Friday night, the plastic surgeon came by, checked the baby out, and said he could go home if he wanted. Our pediatrician agreed, and so the neurosurgeon was paged to sign the orders. Eventually, the only thing holding us up was the Rx for his pain meds, which we got and rushed home. The bandages came off once we were home, as per instructions:
The scar looks FANTASTIC, even just a few days post-op, and it is easily hidden by a hat:
Not that it matters when you're looking at his cute little face:
The plan had been to build him "man-brow" but since they worked only on the back of his head, his little face has been left alone. However, a good third of his head has no skull in it, so he's got a soft-spot the size of my hand (fingers included). There may be more surgery for the little dude, but this time around, he did fantastically, and he isn't getting helmeted (at least not as of now).
He's back to his cheery little self, and played quietly in his exersaucer and with Rory's Godmother while we moved little bits of stuff over on the weekend to the new home:
A special thanks to Godmom (as well as her son and daughter-in-law) who came to lift heavy things, clean and cook for us while we were in the hospital.
So, 2 things I forgot to mention last night:
1) Surgery was further delayed (from 1 until 2) because he had a pimple. They were afraid it was chicken pox and so had to have the Infectious Disease guy come and clear Julian for surgery. I was glad to know they were being so careful, but I was so worried.
2) The staff here at Children’s are unbelievable. Competent is a given, but they’ve been so compassionate and loving toward my son and other patients. I was especially struck by one nurse who would pet and quiet and murmur quietly to a severely developmentaly-delayed girl in the post-op area, to soothe her. This girl couldn’t speak, and had been very loud in her vocalizations before surgery, but this nurse was so loving and attentive to her that she quieted down to a soft hum, and seemed calm. I would give anything for my brother to receive care like that.
Anyway, Julian is much, much more active than he was last time, awake more often too (though not in pain…they are wonderful about that here, too). He opens his eyes (not swollen closed yet) and looks around, and can even focus on me.
His arterial line hates him, but that happened last time as well. He ate at 3:30 am, and greedily sucked down 8 fl oz, and then puked up about 3 of them for eating too fast. He didn’t eat for nearly 2 DAYS last time, so this is a real improvement. He’s peeing well and resting comfortably, and his sucker makes him a happy little boy.
He at 4oz at 6:30 and again at 9 am, and between 9 and 3 took in 13oz. Now he doesn’t want the bottle (or his sippy cup) anymore, because he’s a big, gassy mess. He will, however, tear at my shirt, trying to get his preferred food source. Oh, and being the boy he is, after his first big post-operative fart, we got this face:
I know him well enough that I dove for the camera once he started tooting. This kid LOVES to grab his toes and fart, more than almost anything else, so there’s a smile only a little over a day out of surgery.
He’s much less swollen than he was at this point last time, which is great, and he’s active…playing with his bears (the surgical one and the blue one from the Oakland Firefighters) and trying to rip of his little “hat”. He’s also babbling a little too, which is nice.
We met another family, whose daughter is here for a bunch of very serious other issues, who just found out she’s got sagittal cranio as well. I was able to let them know that the cranio is a totally fixable, almost easy (in comparison) issue, and not to worry about it. Poor little thing is 7 months old, half of Julian's weight, and has a tracheotomy and a g-tube, so she’s got a rough time. We brought them a stuffed animal. :) Tomorrow I meet yet another cranio family (this one a planned meeting) before their 2 year old goes in for surgery on Friday. I feel that I need to give back as well as I can after all the kindness, especially from my “internet friends”, that I have been shown.
By the way, one of my Mothertalkers (a liberal mom’s blog loosely associated with Daily Kos) came by with her daughter, brought Rorysaurus a stuffed bear, and snuggled Julian. They were very sweet to drive all the way over here, and it was great to finally meet them in person. I love my internet community!
On Monday, we went in for a pre-op appointment, and aside from getting cranky when he was stabbed in the hand for a blood-draw, Jules was just fine. They looked at all of his vitals and weight and whatever and determined that yes, indeed, he was ready to be cut on the next day. Whee.
Monday night, we packed up blankets and pictures for the hospital, and made sure we had something fun for Rory to do the next day (thank you, Amber). We picked up God-mom from the airport and then had dinner with Lisa (hi, Lisa). Then, right before we headed off to bed, we gave Jules a good scrub so he’d be clean for the next day.
We went to sleep, and Jules stayed in bed, snuggled up between Pablo and I, all night. We woke up around 7, got Rory dressed, ate breakfast with God-mom and then we took a Sharpie to the back of his head again. This time, we wrote “Fragile.”
We had to stop feeding Julian at 8am, and so by the time we got situated at his pre-op appointment, at 11am, he was a cranky, hungry boy. He asked for “teta” twice, and I had to tell him “no.” Then he started chanting “Mama, Mama” at me, and I felt awful, so I gave him to Pablo to hold (since Pablo is not food and is less distracting to Jules). He was not amused.
We sat in the waiting room with a few other families, and met one whose little girl was in for a laproscopic cranio surgery for just the sagittal suture. It means a couple of tiny, tiny holes and a helmet for 3 months, and no one had told them what to expect in terms of swelling, discoloration, pain or care. We talked for an hour or so, and they seemed much more relaxed afterwards.
Then, the surgeons came in. I know that our surgeons are world class, but they are the oddest men, both in entirely different ways. Anyway, they were still arguing about whether the most important aspect of Julian’s surgery was repairing his little front bumps or opening up the back of his head, since that hadn’t formed quite right. I couldn’t believe they were still disagreeing, on the date of surgery, in front of us, but it turns out they both just have very strong feelings on how much they could fix in one surgery. They decided to focus on the back and see if any of the front could be fixed this time, but to not be too surprised if we ended up with one more surgery. Bleh. I was so hoping we were done.
Jules played happily on the floor, surrounded by other nervous pre-op parents and kids. We filled out more official paper-work (ick) and read up on how this was going down again. This time, Sue (Dr. Sun’s fantastic nurse) wasn’t around, so we met the male nurse who was doing her job that day. He seemed very nice.
Then we were shuffled off to pre-op, where we waited with the same creepy plaster dinosaur we see every time. We met the nursing team and the anesthesiologist (same one who took care of him last time), and then, somehow, managed to hand him over to them at 1pm.
We walked slowly to the cafeteria, brought out our meals from Home On The Range, heated them up in the microwave, and sat down to eat. Then, we updated Julian’s page and worked on Rory’s page, read Cheers and Jeers and tried napping in shifts. The nurse called once to let us know it was going alright, and of course, we missed the call.
However, our beeper went off at 5:20 pm, a full hour and then some before we were expecting to hear from them. Pablo started to pack up and I raced up to the 3rd floor to check on Jules. Dr. Toth was there to let me know the surgery had gone beautifully. They only were able to fix the back, but without that added pressure, the bumps in the front had retracted somewhat, so maybe a third surgery wouldn’t be necessary. Jules had needed one unit of blood, less than last time, and the surgeons were all pleased. “He’s a really cute kid,” the surgeon said, smiling, and left.
I went back and got Pablo, and then we waited around in the staging area until they were ready to let us back into Recovery We got in, and we found this:
Awww, there’s my little bandaged angel. Pablo then went out to the car to go get Rory and Rory’s Godmother, and brought them to the hospital so Rory could see Julian before he got too swollen (although he was much puffier earlier this time than he was last time). While I waited, I made a collage on his hospital crib of his “before”, “surgery” and “after” photos.
Then, in came my hubby, darling little girl, and our magical, beautiful help for the week, Godmom.
Rory insisted on kissing him over, and over, and over again. She was thrilled to see him…genuinely happy. It did me good to see her so pleased.
Anyway, now the three of them are home, and I’m in the ICU with my sweet little boy, who is alert and loving and beautiful. He’s not quite swollen to blimp-like proportions, so he can still see, but he’s loving being touched and petted and talked to.
Thank you all for your support and prayers. You have no idea how much they mean.
September 9, 2008
Yup, Jules has a new surgery date. Poor little guy just can’t catch a break.
So, yesterday we packed Julian into the bike and headed down to Children’s Hospital. After much badgering, the neurosurgeon’s office decided to allow me to get him scanned before heading into the office, so we parked, locked up, and headed into the Imaging area. It really took me back to last time I was at Children’s for a CT with Jules, when he was only five days old, and I was shaking and crying and clutching him for dear life. I honestly believed he was going to die right there in my arms back in December, or that he was going to be brain damaged.
He didn’t, and wasn’t, obviously. So, this time, I wasn’t as scared. Nervous, sure, especially since I’d had to mention his non-characteristic crankiness (which may have been indicative of brain pressure) in order to get the CT done in the first place, but not totally and completely terrified.. However, I’m batting 1000 when it comes to demanding interventions for the kids and ER visits, so I don’t feel too bad about that.
So, we’re waiting in the scanning-waiting room, talking to a mom whose 2 year old son has something-awful-aonma, a childhood cancer, and reminding ourselves that Jules could be much worse off, and in comes the CT nurse, asking us when the last time was Julian had eaten. “Um, just a few minutes ago.” This, she tells us, could be a problem, since they will need him to lie totally still, and if they can’t get him to sleep, they’d want to knock him out with a general, but couldn’t since he’d eaten.
“Well, at least you kept him up all night. He should fall asleep in a matter of minutes, right?”
Um, what? Seems the person who was supposed to call us and explain all of this nonsense last night forgot to call, so we now had just a few minutes to try to get our very well-rested baby to conk out, or we wouldn’t be able to do the scan for another month. Riiight.
We gave it our best shot. I tanked him up on food while Pablo ran down to the pharmacy and got some infant benadryl. We dosed him, let him finish eating, wrapped him and his ugly doll up in his flamey blankie, and put him down on Pablo’s chest. After ten minutes of soothing singing and rocking, which almost got me crying it was so sweet, our sweetie was asleep and could be plunked down in the giant donut.
The images were sent to neurosurgery, and we crossed to the outpatient building, where we saw Dr. Sun and Sue for the first time since January. Despite the cranio-helmet sitting on the desk, we were told that Jules was in for more surgery, as those little horn spots were actually signs of the inside of his head trying to escape to the outside of his skull. Fun. Dr. Sun said they’re going to have to do another full fledged craniectomy, and they’re going to reshape his forehead a little so he’ll look less like a baby and more like a person. Since this, hopefully, will be our last surgery, this re-shaping will be a bit too big for him now, but would allow him to have an adult face when he grows into it.
Here’s the image:
“Glad we got that scan done!” Yup. I’m glad I forced you to do it, too. Turns out he’s not got cranial pressure, but more teeth coming in. That’s why he’s fussy.
The only reason we’d need a third surgery would be if he healed up too well too fast, or if they have to leave large holes in the rebuild that are too much for Julian to fix by himself. If hat happens, they’d do one more reshape when he was Rory’s age or older, and fill in the holes with a calcium bone paste. So, we’re not out of the woods yet.
Anyway, that’s where we are now.
Oh, yeah, and my GP told me that all my health problems are coming from too much stress. Hee hee hee.
Ugh. You know how things sometimes seem too good to be true. Turns out, that probably means they are.
Tomorrow I get to bundle Julian into his little bike seat and set off for Children's Hospital again. They're going to poke at his little bumps (and, supposedly, get a CT scan done). Supposedly, this will determine whether or not Jules' has to undergo more "adjustments" in the next few months.
Hopefully, this will entail, if anything, just a little plagio-band or a temporary helmet to control the flaring skull bone. Or, it may entail endoscopic surgery (not nearly as invasive as last time)...or the full fledged craniectomy again.
I don't think I could handle another craniectomy. Poor baby has suffered enough.
Oh, and while he took a bottle VERY WELL last time he was in the hospital, he's not taking one now, and so we're having to try and re-teach him (including this half-pacifier, half bottle frankenstein-esqe monstrosity that we've made ourselves).
Anyway, keep us in your thoughts and prayers tomorrow.
So, two new bumps have shown up on Julian's head in the last four or five weeks. I'd hoped that he'd just bumped his head, actually, but that doesn't seem to be the case. At our Ped's office today she noticed, but also noticed that the bumps are sitting on top of areas the size of quarters where he has no skull.
So, she's scheduling another CT scan, probably for about 1:30 pm on 6/17, right before our craniofacial appointment. Our original appointment with c/f was on 7/15, but we scheduled one this month as well when I noticed the bumps.
HOPEFULLY, the surgeon will decide that they'll just close on their own (a little bit of a bumpy head doesn't bother me at all), but if not, we may need a helmet or plagio-type band. Unless it is ABSOLUTELY necessary we won't be doing more surgery, I know that. Still...we were told just a few weeks ago we wouldn't need anymore interventions.
And, guess what else we learned yesterday?
The death rate during craniectomy (his surgery) is 1 in 2000 kids. If there's a hole in the dura, or they have to cut the dura, that doubles, to 1 in 1000, since air can get in the brain and cause an embolism...which they can usually catch, but is still risky. However, the way they catch it involves monitoring the heart, so usually, if the heart isn't healthy, they'll do heart surgery first, then the cranio, because not monitoring for embolism is VERY dangerous.
So, Julian's brain had rubbed holes in his dura, something they didn't know going into surgery, which made his chances of dying on the table 1 in 1000. EXCEPT, he had tachycardia...a hole between the chambers of his heart, so he had a 1 in 500 chance of it going VERY, very badly.
My son will be 6 months old tomorrow. This isn't usually such a huge milestone. Usually people celebrate their kids' first birthdays as the big celebration. Believe you me we'll be celebrating Jules' birthday. But tomorrow is special.
See, he wasn't going to live to see tomorrow if the surgery hadn't happened. 40 years ago or in a country without the kind of medical technology we possess, my sweet baby boy would have developed a migraine sometime in April that would only have worsened as his brain tried to expand against his tiny skull, and he would have died in tremendous, excruciating pain sometime before now. He'd be gone.
So, four moths ago, we risked his life to give him a chance to live to adulthood. All surgeries have risks, especially those on tiny infants that involve saws near the brain, so we could have lost him in January, too. But we didn't. He did fine, healed up and is going to grow up to be just like every other little boy (excepting, of course, that he'll be the smartest, cutest, and all-around best boy ever).
All joking aside, I'm sort of in awe of him. He really does seem like an angel, a miracle, a blessing. He's been the light of my life since he was born, with his easy smile, his calm demeanor and his sheer joy to be. I've read too many 19th century novels, I know, but I kept expecting him to get taken from me because he's too good for this wretched planet.
I don't deserve him, I know. But he's my proof that there's a God. Every time I look at him and he grins at me like I'm the greatest thing ever, and every time he and Rory spend twenty-minutes just gazing at each other and talking (she thinks his baby-babble is him talking ins "smanish"), I'm overcome with thankfulness.
So, every day from here on out is gravy...extra. Each day of the rest of his life is a blessing and a miracle, for me, for Pablo and Rory, and for everyone who has ever met him (except his godfather, who is JUST starting to like him a little bit). Thank you to all of you who kept my sweet, sweet boy in your prayers.
Jules has since been back to both the Neuro-surgeon and the Plastic Surgeon. When we saw the Plastic Surgeon yesterday he told us Julian was perfect, and we'd get seen again in mid July. At that point we'll finally get his surgery pictures (after an explanatory slideshow).
The sweet baby has one more appointment (just a check-up echo-cardiogram) week after next, and then he's clear until July, and until December after that.
That's right, no second surgery. His ears are clear and his head is healing better than could have been hoped for.
You can barely see his scar at all now:
Tuesday night I half dozed in the ICU all night, waiting to see when I’d be able to hold him. He had heart monitors, a blood pressure cuff, an IV in his foot, two in his hand, an arterial IV, a catheter and various other tubes and wires connecting him to the bed, so it was nearly impossible for them to hand him to me. Still, I was there with him, and talking seemed to soothe him, especially as his eyes swelled shut. He slept, fitfully, and I worked on reading The Birth House (a gift from my August 2005 Mom’s group) and making Julian a hat for whenever he got discharged.
Pabs and my mom came back in the morning, we had some breakfast, and I went home to shower. Then I had to take the van in to get the hatch fixed (it refused to close AS we were arriving Tuesday morning for the surgery), and I came back to the ICU. He was swollen and puffy, and still a little drugged up. Poor baby. He did finally eat, though, downing his first meal in over 30 hours by sucking down 4oz of pumped milk and still acting a little hungry. That’s my boy. They took the IV out of his foot since he was eating, and that was that.
My cousin, Cindy, drove down from Sacramento to bring Julian and Rory the gifts she’d picked up for them on her recent trip to NYC. She bestowed my son with a monkey and a winter hat, showed Pabs and I pictures of her trip, and then went back to the house with Pablo for dinner and to give Rory her pig.
This was the first time Cindy had met Julian in person, though she’s seen lots of pictures, but I’m sure he’ll look much better the next time they meet. As per Pablo and the nurses’ recommendations, I hopped in the car and headed out to Newman Hall (my church) for my weekly meeting. It felt odd to be anywhere without Julian, since he’d been in or on my body for the last 11 months, but the change of scenery and familiar faces did me a world of good.
Every week we have a prayer or meditation we’re given, and one of the group leaders had typed up one asking for Julian’s healing and strength for us. It was incredibly sweet, and it was fantastic to know how much Julian was cared for, even by people who’d never met him.
Wednesday night was much the same as Tuesday night…little sleep and lots of reading. They shuffled us around to a different bed space, and tried to “fix” the arterial line in Julian’s arm (they couldn’t get any blood out, and couldn’t detect blood pressure with it). The resident ended up getting showered in blood (arteries are under pressure, apparently), and gave up.
Thursday morning we were moved into the less-intense side of the Intensive Care Unit, where all but two of the kids had been operated on by the same doctor, in the last 2 days, so the whole ward was sporting the same awesome head-wrap of bandages. Julian was finally up to nursing, and that made us both feel much, much better, I can assure you. They’d removed one more of his IVs over the course of the night, and so he was a little bit easier to get in and out of his bed.
I also finished making his hat:
He’d only been taking in food for a day or so, but the residents were concerned about his digestive system, and mentioned that if he didn’t “go” soon they were going to have to start talking about suppositories. Bleh. Just the mention of the idea seemed to be enough for him, and my little champ filled the bed-nest they’d made for him. Once that disaster was cleaned up and the sheets were changed, they pulled out his catheter. When he started crying, a nurse (not our regular one) came and began to tease him a little bit. “Aw, that wasn’t so bad, was it?” He then, I kid you not, peed in her face. So, the bed had to be changed again.
The swelling was awful, but the morphine was letting him sleep comfortably, so I went home to sleep on Thursday night for the first time, leaving my mom at Julian’s bedside. I got home to snuggle my daughter, and found I wasn’t even going to have to cook. Kos and Elisa bought us dinner, and Elisa (and their two darling kiddos) delivered it and hung out.
Friday morning we arrived at the hospital, let my daughter snuggle Julian for a bit, and, lo and behold, his eyes were open! He'd also shrunk out of his hat!
He was obviously feeling much better, too, and had taken his last dose of morphine at midnight…and with just Tylenol hadn’t been fussy or cranky at all. They finally took out the last of his IVs (leaving just the lock on his arm for easy injections if necessary) and told us we could take the heart monitor/blood pressure cuffs off for 4 hours at a time.
For the first time in 4 days, I was able to hold my son in my arms and not have to worry about snagging some tube or setting off an alarm. It was glorious. We even got to dress him (in the clothes from Pabs' sister Sofia...perfect for the hospital since they could have the monitors on under them).
Then Dr. Sun, the surgeon, came by to check on Julian. When he started talking, Julian lifted his head to look for him. “If he can lift that big head, he’s fine,” said Sun, who then popped the bandages and steri-strip off with one hand.
Shortly after they unhooked him, Pablo’s sister, Marina, and Tidiane came to Children’s and got to hold him.
Marina is Julian’s Godmom, and we were thrilled she got to come see him in the hospital. After they left, our friend Jen (from Newman) came by, and (after some prodding) we got Liz to come, too. Liz was there when they ran Julian’s first tests back in December, and she watched Rory when we went to Julian’s big cranio appointment, so it was great for us to share the new-and-improved Julian with her.
The 5th floor pediatrician said Julian was he best-looking cranio case he’d ever seen, especially considering the fact that he’d had 4 sutures fixed instead of the usual one or two. That night both Pabs and I crashed at the ICU (we had a window seat and the nurses pretended not to notice the both of us). The next morning Armando and Ines arrived at the hospital, we all had breakfast, and the nurses took out his lock. He was free to go. We headed back to the house, took pictures, and then went to go have dinner with Uncle Bob.
So, Julian is home. He didn’t bruise from all that swelling, has been cleared to sleep however he wants (in bed with us) by his pediatrician, and is taking Tylenol 3-4x a day. That’s it. If you don’t see the incision, you’d never know anything had happened as he’s such a sweet baby, with such a perfectly round head.
Special thanks to my mom, who took off a week of her life to come up and get run ragged by Rory and sleep in uncomfortable ICU bed-chairs so that we could be with our son when he needed us and with our daughter when she missed us. This wouldn’t have been possible without her, and I wish there were more pictures of her and the kids, but she was busy cooking and stocking our freezer and entertaining Rory, and no one thought to document. I love you, Mom!
So, the swelling is WAY up.
He's doing well other than that, nursing like a champ (YAY!) and they've removed all his lines except his IV, heart monitor and catheter. We had over 9 tubes and wires yesterday, so this is a plus!
He's still on morphine a few times a day and tylenol around the clock, but he's comfy and not fussy.
So, Monday night was awful. I barely slept, Rory kept waking up, Pablo tossed and turned. Seems like the only one of us who slept well was Julian, sweet oblivious boy. One of our coping mechanisms was to write in Sharpie, on the back of his head: “Handle With Care.”
It amused us on an otherwise awful night. We woke up at 5 am to shower and make tea, packed up a change of clothes, some blankets and the camera, and bundled Julian out of the house for his 6am pre-operative anesthesia appointment.
We didn’t get to the docs until almost 7:30 (his scheduled operative time), and then they had a hard time finding a blood-pressure cuff, hospital gown and hospital socks small enough for him.
Then he sat in our laps, and, after accepting that he was going to get no food, began burbling, cooing and smiling at us. We got it on camera.
We met the nurses who were going to care for him, signed the official paperwork allowing for his craniectomy (worst word ever!) and had the surgery and his anesthesia explained one more time. Turns out the surgeons had decided to do the surgery not by taking out small strips of bone, but by removing about a half of his skull, shaping it and quartering it outside his head, piecing it back together, and then slipping it back in over his brain. Yeah.
So, the anesthesiologst (who at this ungodly hour was freshly made up and pretty…) came and got him around 8:30, bundled him up in his nice warm blankie, and took him away.
Pabs and I sat in the cafeteria and waited. And waited. And waited. Sue, the nurse in the OR, called every hour to update (“They’re cutting now,” or “They’ve removed the piece now”) and our friend Liz came to keep us company. Around 2 or 2:30 they called to let us know he was done, & we met the surgeons again to see how it went. The first surgeon told us it had gone well, and that the only unexpected thing for him had been that Julian had lost a little more blood than they’d expected, but the transfusion had taken care of that.
The second surgeon then came out, and said that he’d been a little surprised by how “snug” Julian’s skull was. They’d thought they were doing this surgery way in advance, but it turns out he was just out of room in there (figured they had 4 more weeks before it would have compressed his brain…turns out they only had about 4 more days). The protective casing between the brain and the skull (the dura) was stretched to its limit, and had been rubbing against the inside of the skull and had rubbed through in a few places. Pablo and I both sagged against the doorframe on hearing that…but good for Julian that they caught it all in time.
Nurse Sue then told us we’d have to wait a little while before we could see him in Recovery, so she showed us his “after” picture from the OR, complete with incision. His head was perfectly round, and MUCH bigger than it had been.
Finally, they told us we could go in and see him, and Pabs and I rushed into the room. Where was my son? Turns out, the one baby in Recovery WAS Julian, even though it looked so little like him that we walked right past him.
Some of the change is swelling (which will get MUCH worse than it is now) and some was a change in head shape (his head is round, his scowly-horn is gone and his eyes are farther apart). It’s a little disconcerting.
Rory came to visit tonight, before the selling went up.
Anyway, tonight is my night at the ICU. He’s VERY drugged, sore, and, understandably, a little cranky. Thank you for all your thoughts and prayers for him, and I’ll re-update when we find out when he’s going home.
Well, we’ve had a wealth of health information recently on Julian. First, on December 27th we (he and I) came down with thrush. It is a horrible, fungal infection that passes from baby to mom and back, and it HURTS. We were getting on a train when the symptoms became really obvious, but our wonderful pediatrician called in our prescriptions to the Redondo Beach pharmacy, so we were starting to heal up by New Years.
On Sunday the 6th, we were able to meet with a wonderful family in Torrance whose son had gone through all of this with their son ten years ago. Their son hadn’t even been aware of the surgery until last year, when his folks found out he and some buddies were planning to shave their heads. He’s an athlete and a straight-A student, and when we met him, you couldn’t tell there’d ever been anything wrong with him. That allayed quite a bit of our fears.
His mom and dad did warn us that the recovery from the surgery isn’t easy. The incision site is ugly, and by the second day the kid’s face was so swollen his eyes wouldn’t open, and started to bleed. You can’t hold the baby right out of surgery, but you can touch them and pet them and talk to them. The hardest thing once you get home, they warned us, is keeping their delighted older siblings from harassing them.
Wednesday the 9th had us at the eye-clinic in Oakland. Sitting in the waiting room, the other mother of an infant and I kept eyeing each-other’s babies. Finally I asked what they were here for and she said it was a pre-appointment for the cranio-panel on the 10th. “Really,” I asked. “What’s wrong?”
“Lamboid,” she replied, naming the sutures that were closed on her son. “You?”
“Saggital and Coronal.” Selena, her son Malik and husband Kevin became buddies in the waiting room and hung out together at the hospital on the 10th as well.
When we finally got into the doctor, he put that freaky solution into Julian’s eyes to dialate the pupils and then peered into them with his lights. They were looking for pressure on the retinal nerves, which is a good indicator of pressure on the brain. Nothing. Julian’s eyes are fine, and there’s no pressure on his baby grey-matter.
Yesterday we had to head to Children’s in Oakland for a 5 hour craniofacial panel. We got to see his CT Scan:
We met a jaw surgeon, an audiologist, and ear-nose-throat doctor, 2 plastic surgeons, geneticists, orthodontists, speech pathologists, dentists and the neurosurgeon. Julian came away with 2 diagnoses:
Non-syndromatic pan-synostosis. In other words, Julian is kind of a fluke…this just happened by chance. The most common syndrome associated with this much fusion is Carpenter’s Syndrome but that usually also comes with extra or webbed toes, obesity, small babies and mental retardation. None of these, we were told, is something affecting Julian.
A rhinovirus Infection. The Ear-Nose-Throat guy detected some fluid in Julian’s right ear, and determined the cause to be…the common cold.
So, he’s perfectly healthy except for the head bump and the sniffles.
Anyway, here’s the breakdown we received after meeting over a dozen doctors:
*They will anesthetize him while he’s still in our arms.
*Then they’ll take him into surgery.
*In the OR they will shave a line from ear to ear (like a headband) for the incision. The hair will be bagged and given to us post-op since it is his first haircut. No joke, that is standard procedure.
*Surgery will be 4 hours long, barring complications. Dr. Sun’s nurse, Sue, will be in the OR and will call and update us every hour, or as developments warrant, whichever is more frequent.
*They’ll be separating the metopic, saggittal and coronal sutures (how will depend on how it looks when they open him up) and smoothing out the bumps in his skull.
*He will then be turfed to the Pediatric ICU, still on a ventilator, and on a lot of morphine.
*He’ll have a big bandage on his head, will be woozy from the pain meds ad won’t be able to eat till the ventilator is gone.
*Once he’s off the vent (a few hours to two days, depending on him), he’ll be able to take breastmilk in a bottle, or possibly even nurse.
*Swelling the second and third day will be awful.
*On day 3, they’ll remove the bandage.
*Once he can open his eyes, he’ll be moved to a regular room for one more night.
*Then they’ll give us an RX for pain drugs and send us home.
*For a week he’ll have to be upright all the time (even sleeping upright in his carseat or swing) to help reduce the swelling. He’ll be cranky and sore for a while.
*At first glance we were told there was a 25% chance he’d need a second surgery at 9-11 months of age. Now they’re thinking it’s more like a 50-75% chance. This is our only bad news.
*He will NOT need a helmet! They’ll be using plates and screws (they will dissolve over the course of a year) to hold his skull plates in the right place, so the only visible evidence of the surgery will be his scar and the missing hair.
The hospital is VERY strict about visitors in the ICU (Pablo and I can’t both be there at night), so waiting until he comes home to come see him is probably best for the general public. Rory could use some friends and entertainment that week, and we could use a meal or two as well the first week at home (since we’ll have to be holding him upright all the time).
Anyway, please keep him in your thoughts and prayers. He’s going to need them.
So, we've got LOTS of appointments for Julian now. He's got an eye doctor appointment (to make sure his eye sockets are positioned correctly) on 1/9, a FIVE HOUR craniofacial panel on 1/10 and then surgery on 1/22. He'll have a pre-op appointment in there somewhere, and he's got weekly visits to the pediatrician. Little guy is eating well (he's put on just shy of a pound in 2 weeks and has gained an inch in height) and aside from a little gas, seems to be really calm still.
Oh, and we took Christmas Card pictures:
We met with the Neurosurgeon and the Craniofacial surgery team at Children's Hospital of Oakland today.
The bad news:
They determined that 4 out of the six sutures in Julian's head are sealed shut, and that he will require skull surgery to remove chunks of bone from the top of his head and his forehead. This many sutures closed usually indicates a serious genetic syndrome, and they're going to require extensive genetic testing. They want to do the surgery in late January/early February to make sure his brain doesn't get squeezed. It will require an ear-to-ear headband cut, 2 units of blood and many hours of surgery. He may also require another surgery at 9 or 10 months of age to correct any lingering deformities in his forehead and face.
The good news:
His brain is fine. Right now, we have a bone issue, not a brain issue. Barring any complications in surgery, he will not be affected mentally. He may or may not need a helmet, depending on the exact surgery route determined to be best by the surgical team. The main surgeon, Dr. Sun, graduated from the Columbia University College Of Physicians And Surgeons with an MD and has been in the profession for 16 years. He is one of only 300 pediatric neurosurgeons in the United States, and is the Barry Bonds of pediatric neurosurgery, according to some of his reviews. He heads up pediatric neurosurgery at UCSF...and more importantly, is who my ped said she'd want to see her son. Julian shows no markers for any of the syndromes that have craniosynostosis as a symptom, and his exams have shown a perfectly healthy baby other than this problem. AND, we get a good six weeks of snuggle time before they operate...something that would have been impossible had my pediatrician not caught this so quickly.
Non surgery related good news includes:
Other than than, he's sleeping and eating like a champ, will take expressed breastmilk in a bottle (VERY important since he'll be in the ICU for a while after all of this has been done) without complaint, and is more and more alert every day, sweet boy. His sister loves him (and fed him a bottle today all by herself while I took my mom to the airport). And, what with having the baby and being too freaked out to eat much more than the veggies hubby keeps handing me, I'm already down to less than 1lb over my pre-pregnancy weight. Hubby's company has been VERY helpful and understanding about his leave being longer than planned. We've scheduled his baptism to be done by the same priest who did my daughter's.
Thank you for all your comments and congratulations! We got some bad news yesterday, though.
We took him to his 1st check up, worried about a tearduct infection and mild jaundice. We instead wound up at Children's Hospital of Oakland, where 2 CAT scans and an Xray confirmed that Julian has Craniosynostosis. Basically, it means: some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth.
Two of his sutures are closed, and it'll require some surgery. What kind is still to be determined, but since it was caught SO early, it may be only an endoscopic procedure and then a helmet. The other option involves bone-saws, and I don't want to think about it. I can't believe the things they're going to have to do to my sweet little newborn son.
Anyway, that's what the weird horn on his head is. Not molding from the birth, but this.
We don't know anything more than that (what kind, when the surgery is, whether he's affected permanently or not) but I'll let you all know when I do (probably later today we'll be told when we can go see the neurosurgeon). This is kind of a huge and horrible shock, and I find myself either pretending it doesn't exist, or weeping uncontrollably. Keep him, and us, in your thoughts & prayers please.
I went into labor on Tuesday, my water broke between midnight and 1am on Wednesday morning, and Pablo and I headed to the hospital once the contractions got a little heavier and harder. We were admitted and did about 10 hours of hard and heavy back labor with our doula before it was determined that Julian was heavily posterior. It looked like we were going to have another C-section. Midwife came, did some (painful) magic, and he fixed his head and started to come down.
After a relatively short amount of pushing, he was born into his Papa's arms at 6:38 pm on Wednesday, December 5th. After Julian was set on my chest, Papa cut the cord and cuddling commenced. He weighed 7lbs 4oz, was 19.5 inches long, and has a weird rhino horn from where his poor posterior noggin got squished, they think.
He's such a cuddly love.