Happy 1st Birthday Dashiell!

Today I can feel pretty much the top of an entire tooth, and a bit of the one next to it (the center two on the bottom).

I can also see the buds of his top two teeth behind the gums, so it'll be interesting to see how long before they descend enough to start cutting through too.

Today, on May 8th at his cardiologist check-up, he weighed in at a whopping 15lb13oz!!

So in the past 5 weeks he's put on a pound and a half, and close to 2 whole pounds in the past 6 weeks/since his surgery!

It's safe to say that fixing his heart murmur is a Very Good Thing &tm; for his weight (aside from all the other reasons of course). His therapists and the cardiologist have all noticed that his legs are a lot more chunky, and that he's looking meatier all over. And while it's hard to accurately measure a squirmy infant's height, he's about 1 1/4 inch taller than when the cardiologist last measured him (28 1/4 inches).

Whee! I'm so happy that he's doing so well since his surgery. It makes all the crappy sleep due to lots of feeding (somewhat) worth it.

April 14 marked 9 months. Amazing that at that point you'd almost spent as much time out of the womb as inside of it.

The big news was that you finally had your heart murmur fixed. After an unsuccessful attempt back in January the various planets such as FDA approval for the plug, insurance, time and all those things aligned and we were able to reschedule and get it all over and done with.

Actually going to the hospital and waiting for you to get through the procedure and recovery and all that was a tedious process, and for you to lie there looking like a little mechanoid octopus with all the wires and tubes hooked up to you and coming out of you it couldn't have been much fun either, but you handled it with extreme good humour, which was good all around. The day after your procedure we had to wait endlessly for a bunch of diagnostic tests before we could take you home, but finally we were on our way and we could put it behind us.

A week later we had a follow up with the cardiologist and you had already put on a couple of ounces which was promising, seeing as that was one of the main things we hoped to change/fix with your procedure. You also made Dr. Crowe envious of your little skeleton tracksuit, which is very cute if I do say so myself.

The spitting and raspberry blowing continued unabated, along with the drooling and lack of teeth. Maybe fixing your heart will finally help them "break on through to the other side". But nothing so far.

Therapy went well, and you continued to get stronger during the month. Occasionally you could sit unassisted for a few seconds, before forgetting that you were sitting unassisted and just falling over. Sadly at your age we can't just tell you to pay a-bloody-ttention, because it all sounds like gibberish to you I'm sure. Hopefully your attention span will lengthen, and as a result your sitting-and-staying power.

Looking forward to the next month...

Life is going to get scary now... we have an almost mobile infant. Eep!

He's getting so much closer to crawling all of a sudden. It's so weird how he starts doing things in leaps and bounds... one week he's not doing all that much, and all his therapists are trying to get him to engage his arms, and the next week he's doing the push-up of all push-ups, by himself, in order to emulate yoga's Cobra pose, or to get in that hands-and-knees-almost-crawling pose. Watching him rock back and forwards on hands and knees, or whatever the "I've still got my belly on the floor so I'm not really off the floor" equivalent is, is amusing. It looks more like he's dry-humping the carpet :D

Not only did he get on hands and knees a few times on Saturday, he's been doing it every day since, lots of times. He's unstoppable. And he seems to have figured out how to roll from belly to back again, something he seemed to have forgotten for a few months.

I'm so proud :D

The biggest earning day would have been Halloween, when he wore the little bear outfit in this user icon. People went ga-ga over the cute that day.

Hospitals are tedious places. And there's a distinct lack of access to decent and copius amounts of fresh tea (that doesn't involve going down to the daytime-only and super-overpriced café).

Sleep wasn't as easy to come by as I had thought, as there was a last minute addition to our side of the ward around 12.30am. The baby's mother was nice and loud while explaining at great (unnecessary) length about her daughter's medical history. Not that curtains really keep out much sound anyway, but it's not that hard to keep ones voice down a bit so that other people mere meters away can't hear your conversations verbatim. It was annoying because PreZ and I had already laid down on the fold out couch and were attempting to sleep in the darkened ward. The baby's parents had all walked past us to get to their curtain, so it's not like they hadn't seen that there were people next to them trying to sleep.

Then after all the doctors and nurses had finally left them alone, it was quiet enough to fall asleep, until Dashiell woke up around 3.45am and decided he'd be awake for a while. I can't blame him really as he'd slept through most of the day, and I have to give him big props because he was in a great happy mood, yet content to be fairly quiet and he didn't even try to roll over (which is usually something he does a lot and almost immediately upon noticing he's on his back), and he didn't complain about it either. So we spent some time cooing quietly back and forth, and he ate a bit too and played with his glow-in-the-dark toe* and various other cables that were stuck all over him, and I watched some Firefly on PreZ's Archos. At 7am or so he started nodding off again, and I attempted sleep once more.

Sadly, I had to wait a while, as the mother next door decided to start calling all kinds of friends and family to tell them they were in the hospital, and why, as well as that lengthy medical history replay again. Thankfully after two loud 10+ minute phone calls she stopped calling people. By now I could almost regurgitate everything she had said, having heard it several times. Finally she shut up and I could fall asleep again until PreZ woke me at around 9am. He was under the impression that things such as the echocardiogram and x-ray would be happening fairly shortly (as we'd been led to believe by the nurse), and that we should get up, shower and make sure our things were together so we could leave at 10.30. Which of course didn't happen, so my sleep was cut short for no good reason.

After all the echo and x-ray stuff I dozed a bit until it was time to leave and go get raped by the parking attendants for $35. And that included a reduced first-day hospital-patient rate of $10... I know it's Manhattan, but really, it's a hospital, it'd be nice if you didn't get price-gouged when your kid is in the hospital.

We got home at around 4pm finally, and ate something. At 6pm we were all in bed asleep, though I was up sometime after 9 because Dashiell woke up. PreZ got up for a little bit at midnight, fiddled with some stuff, and went back to sleep. Dashiell had some catnaps and kept waking up every time I decided to go back to bed. So here I sit with a movie playing in the background at almost 5am. sigh. At least the little trooper is okay and he was stellar througout the whole hospital ordeal.

*They attach a blood-oxygenation monitor to a big toe, which is essentially a bright red light that gets taped onto the toe. In the dim light of a hospital ward, a bright red toe is a fascinating toy for someone who likes to play with their own feet.

Thanks to all of you for your support, prayers, well wishes etc. It means a lot to us :)

I'm typing this from the hospital, where they actually have internet. I think this is supposed to be a computer for the nurses only, or that's what the nurse from the procedure/recovery floor said, but other patients were using it too, and nobody has said anything. We do also have webtv on the tv screen that's at Dashiell's screened off area, but the keyboard had a bunch of broken keys, and would only go to "livejouralco" [sic], which wasn't much help.

I've caught some broken snatches of sleep here and there over the past few hours. It's hard to sleep in a place like this because you don't have your own room, though there is nobody else on our side of the ward. It's still kind of noisy, you can hear other people's tv's and conversations, and even the nurses at the nurses station and the wanderings around of other staff, as well as the beepings, chirpings, hissings and sputterings of all kinds of machinery. The air is also quite dry, so I woke up with quite a bit of cottonmouth, but I brought along a bunch of bottles with drinks to help (the little hospital café down in the lobby is expensive and a bit of a rip-off).

Supposedly we'll be out of here sometime around or after 10.30am on Wednesday. 10.30 was the time they started "the case", and we're required to be here 24 hours otherwise the insurance apparantly won't cover the procedure. Weird stuff. The night nurse just hooked Dashiell up to an IV again (he was IV-free when we got to this floor earlier this afternoon). I'm not entirely sure what's in it, as I was asleep when they hooked it up to his heplock. I know there's a second dose of antibiotic in there, but that's all I know.

Anyway, time to go hydrate myself a bit more, and then maybe to catch a few more slivers of sleep if I can. Thanks again for your support guys!

Even so, it's going to be a dull day at the hospital. First we get to wait a couple of hours in the waiting room, and then a couple in the recovery room before he gets moved up to his own room. Waiting room seats are never that comfortable, which sucks.

We'll be staying overnight, as there's a place in the room for PreZ and I to crash out too.

For those that have the numbers, we will be availible on our cell phones. If there's no response it might be because we have to turn them off in certain parts of the hospital... or I might have turned mine off because I finally have the oppertunity to sleep (properly) for the first time in days. I'm currently running on about a dozen hours for the last 3 days I think, if that.

We'll be home again, and near an internet connection, sometime Wednesday afternoon.

Anyway, off to get ready and pack a few things in an overnight bag... pjs, snacks, a book, diapers, change of clothes etc.

Today you turned 8 months old. You're nearing the age that you'll have spent as many weeks out of me as you did inside me.

This month was decidedly more quiet than the previous one, other than the plane trip home, a lot less international travel for this mini man of mystery. Mostly we've just been settling back into the daily grind of therapist sessions, which doesn't make for spectacular storytelling.

Static-y tv sounds took a backseat to the new sound you like to make/thing you like to do with your mouth... raspberries and spitting. Sometimes you will do this for quite some time, over 5 minutes at a time. Enough time that I think my own lips would have fallen off with blowing so many raspberries.

The spitting would be kind of amusing, if it didn't involve saliva. You already drool plenty, we don't really need it to come out at high velocity at us. Usually you have this extremely indignant look on your face when you spit, and accompany it with rigorous flapping of your arms.

You had an evaluation at the children's hospital this month, where you were supposed to be fitted with handsplints, because at the time the splints were recommended (late december), you were folding your thumbs inwards a lot. After the bureaucracy finally caught up and gave us an evaluation date, it turned out that your thumbs had mostly corrected themselves, and you didn't need the splints. So thankfully a bit of good news.

Another item on the good news list was that we came home from South Africa to the news that the little plug that can fix your heart murmur has been re-approved by the FDA, and at the end of March you have the catheterisation procedure rescheduled. So, no major surgery, thankfully.

On the flight home from South Africa you got to meet your other grandma, and your two uncles, for a little bit when we had a stop in Amsterdam. So now you've met everyone in your dad and my immediate family. Hopefully we'll be visiting them all again later this year.

Your trunk gets a little stronger all the time, and you're getting closer and closer to sitting up without help. We still need to work on making those weedy little arms stronger though, but that too is seeing improvement all the time. You're getting much better at pulling your knees under you during tummy time, so when the arm strength is there, we don't think crawling will be that far off at all.

Hopefully by next month there will be more progress to report.

Love,

Mama

On Valentine's Day you turned 7 months old.

I would have written this newsletter sooner, but your mother is a slacker, and we were in South Africa at the time.

One of your favourite things to do early on was to make a kind of gurgly sound like a static-y tv. We have been highly amused by this, and at the moment of writing, I wish you would revert back to it more, seeing as you've progressed to other things that are a little messier.

Late January we had your catheter procedure scheduled to try and fix your heart murmur. Sadly that didn't quite work out like we hoped, and we took you home the same day, with the heart murmur and two little puncture marks in your groin. You recuperated really fast from that ordeal, with no apparant side-effects, for which I'm thankful.

You also charmed the hell out of the nurses on the recovery ward, which would become a running theme over the course of the month.

Not days after your procedure we were on a plane to South Africa to meet your grandparents. I had been dreading this a fair bit, as a total of about 17 hours in a confined space with an infant wasn't the most appealing prospect. To my utter relief and absolute delight, you were a complete dream to travel with. It made the trip a hell of a lot more pleasant indeed. Besides being great on the plane, you were also really good about long travels in the car, which made driving to and from and inside Kruger Park a nice experience.

On our flight to Cape Town we did encounter the kind of child I'd fervently hoped you wouldn't be. A little boy of about one and a half or so in the row in front of us, who proceeded to have the screaming hysterics the entire way. His parents were also completely incapable of understanding what he wanted, and he seemed incapable of communicating his needs to them. Thankfully the flight was only 2 hours, and we didn't end up with kids like that on the longer flights to and from South Africa.

We saw lots of critters and amazing sights there, and you also went up Table Mountain but sadly I doubt you'll remember any of it. We did take over 1100 pictures, as well as some video, so you'll be able to enjoy it a little in retrospect when you get older.

Not that it's any real surprise, but you charmed the hell out of my dad and Diane. Diane could be overheard having conversations with you where she was discussing hiding places and other ways to avoid you going home with us. Unfortunately for her, we're not ready to give you up.

You were just so great on the trip. The change in temperature didn't bother you at all, nor did the heat. You had the luxury of being small enough that we could bathe you in little portable containers during lunch out and about in Kruger park. We all wished we were small enough to be able to do so too on some days.

Other than that you're still an active roller, which drives us nuts when you roll and scream about being on your tummy. All your therapy is making you stronger in your trunk bit by bit, which is good. We still worry about the day you start crawling though, because you'll be into absolutely everything. It's nice to see you so happy and active though.

Until next month...

Love,

Mama

One (1) non-napping baby who thinks he's a spitting llama.

Potential uses:

- As birthcontrol
- To water your lawn, or mist your indoor plants

Rates:

Free, as long as you keep him for a minimum of five (5) hours. Below that, rates are negotiable.

Traffic was fine for most of the drive, until we hit a patch before the George Washington Bridge and Manhattan exits. It wasn't too bad, but we did end up about 15 minutes late. I don't think it mattered too much though, one of the nurses said later that there had been quite a few cancellations... flu and cold season wreaks havoc on scheduled procedures and surgeries because they can't/won't operate on kids that have or have just had a cold.

After meeting with a nurse, a cardiology fellow, the anaesthesiologist and a bunch of other sundry folk, and after signing a gazillion forms and running through the usual standard questions regarding allergies and such, we got Dash into his little hospital gown. I wish we'd had the camera with us for that, because it looked really funny... a little floor length gown covered in harlequin clowns.

After that we carried him into the "Cath Lab", where they got busy putting the little mask on and getting him ready for surgery, and so we left him to go have breakfast downstairs and wait in the waiting room until they were done. They said the procedure should take anywhere from 1.5 to 3 hours.

At around 10.30 I think one of the nurses came out to tell us that Dash's cardiologist was on the phone (he didn't do the procedure but referred us to the surgeon), so PreZ went to take that call. Moments later from another door the surgeon appeared to come talk to us. Well, to me anyway. We went to a parent conference room and collected PreZ who had finished with the call. The call basically outlined the same as what the surgeon was going to tell us (the surgeon and cardiologist had been on the phone together before they'd come to tell us).

The good news is that Dashiell came through the procedure just fine, no problems there.

The bad news is that they couldn't fix his PDA (Patent Ductus Arteriosus).

"The ductus arteriosus is a blood vessel that connects the aorta and the pulmonary artery in the fetus. That blood vessel is supposed to close when the baby is born. If it does not close, the congenital heart defect is called a patent ductus arteriosus."

Now, in most cases that valve is shaped like a funnel, and so when it's plugged up, the coil or device is easily and firmly nestled with little chance of dislodging. In Dashiell's case it's more shaped like a tunnel, because it's almost the same width on either end. The surgeon tried various kinds of coils and plug-like devices, but none of them worked, as they were all easily pulled through (they were still being held onto while he was testing this). Obviously this is something you want to avoid, because the last thing you need is a small coil or plug floating in his circulation and causing some kind of stroke or embolism.

So the bottom line is that the procedure was all for naught.

There is apparantly a plug out there that would fix the problem, but it's pending FDA approval and not availible in the US, of course. It's in use in pretty much every other country, but the FDA moves at glacial pace. The doctor was saying that they keep telling him that it should be approved any day now, but so far nothing. He told us we could call his secretary every so often to find out what the status is on the approval for the device.

Friday we have a follow-up with the regular cardiologist, where I expect we'll discuss the options. As far as I'm aware it's either wait for the device to be approved, or more invasive surgery. Seeing as his PDA hasn't presented him with any health problems other than potentially slower weight gain (but we don't even know if his slower weightgain is solely due to the Cri du Chat, or the PDA, or a combination of both) I'm personally inclined to wait a while for the less invasive procedure. But we'll see what happens.

By 11 they had wheeled him back into the recovery room. He looked like a little mummy all tightly swaddled up in white blankets. Another one of those moments where we wished we could have taken a photo.

He woke up slightly about half an hour or 45 minutes later, and I managed to feed him for a little bit, but it wasn't easy especially not with him swaddled in a large wad of blankets with about a dozen cords and tubes coming out at all ends. He also had a severe case of cottonmouth, so I think that made nursing harder or less pleasant for him. So after a while we put him back into the crib. The nurse was about to use an oral syringe to give him sugar water, before I kind of cut in and got PreZ to fetch the packet of breastmilk I'd expressed earlier and which they'd allowed us to store in the fridge there. Better something with more nutritional value than just empty sugar calories. He wouldn't really take the breastmilk from the bottle either, so I decided to use the oral syringe, which was a little messy at times, but it worked. Just having some moisture squirted into his parched mouth made him a lot happier and calmer.

Around this time PreZ had to leave, as he had a job interview scheduled down near Union Square. Life as they say still goes on.

After a while Dashiell found his thumb and didn't want to keep removing it so I could squirt some milk into his mouth, so I just kind of stuck the syringe in the corner of his mouth next to his thumb and squirted it in that way. A little improvisation, but it worked wonders... he sucked away at his thumb which now magically produced milk. Well, kind of. He was mostly asleep anyway, or at least he didn't want to open his eyes and regain full conciousness, so it worked like a charm.

I managed to feed him quite a bit of milk that way before he fell more fully asleep again. He was on a fluid drip so it wasn't really necessary for his hydration, just for his tummy not to feel so empty and his mouth less dry.

While he was asleep I read and at one point went downstairs to eat some lunch, and then more reading until he woke up again around 3pm to eat some more. This time I managed to breastfeed him more successfully, he wasn't quite as doped up and fed more easily. PreZ had called just before that to say he was on his way uptown again, and one of the nurses had said that by that time he'd be taken off all the equipment and we could take him home. That was another good thing, not needing to stay in the hospital overnight.

When PreZ arrived at 3.30pm one of the nurses started removing the IV, and the other monitors and things. At this point Dashiell woke up. He was very groggy but in a good mood otherwise. All the nurses cooed over him ("And if we all coo over him, then your baby is really cute, because we see babies all day long!"). There was a nurses station in the middle of the recovery room, so there were always a bunch of nurses present.

Then down to the valet parking area, and onwards home. Dash passed out in the car shortly after we left. We were home around 5 or so I think. At that point I was pretty delirious with sleep deprivation, as I'd only slept about 5-6 hours in the previous 2 days, which had now stretched into about 3 days. Dash woke up for a few minutes when we got home, but quickly settled back down when I took him to bed and started to feed him. Aside from the occasional feed he slept until around just before 1am, which got me a good couple of hours in too.

Earlier he was trying to do his Jumping Bean routine, and he's generally happy, so he seems to have come out of it all pretty well. No vomiting either which is good, as that's a potential side-effect from general anaesthesia.

Sadly though it was all for naught, and we're back where we started.

We have to be there at 7am (argh! it's at Columbia in Manhattan, so at least a 30-45 minute drive seeing as traffic once we get onto Manhattan is always slow), no more milk after 1am, clear fluids (water, pedialyte or apple juice) until 5am, after that nothing else. He should be on the table by 8am.

This is going to be a nightmare, seeing as he feeds pretty often still. I need to go pick up some pedialyte, because of the three choices I think it's going to be nutritionally better than apple juice (and hopefully not as sugary), and at least offer something as opposed to just water.

Apparantly the overnight facilities, which is a pull-out couch or something, can sleep two, though it's a tight fit. So PreZ can come along too which is nice.

Depending on what tests etc. they want to run Thursday morning, we should be out of there by noon or so.

Tonight's going to be a real fun night o.O

Today you are 6 months old, an entire half year already!

Lots more doctor visits this month, but overall the results were pretty positive. Your larynx looks normal, which is a huge relief. You will however need a minor surgical procedure to close up the little hole in your heart that causes the murmur. Hopefully though when that's out of the way you'll gain weight a little faster.

You've either been growthspurting like crazy, or you've switched your clusterfeeding to nighttimes, as my sleep has been very broken by your frequent night feedings. Maybe when your heart is fixed and you don't burn calories as fast I'll get a little more sleep... though I'm not counting on that.

This month the rolling from back to front hit overdrive, and you now roll almost as soon as you're put down. One morning in particular when you were in a happy mood you went from back to front straight through to back again! I was very impressed. So far you have only done that the once. The only problem with the rolling from back to front is that once you're on your belly you will often complain within moments or minutes, yet as soon as I roll you over onto your back again, you flip yourself onto your belly in a matter of seconds. There are days where this is repeated so many times it's like watching some comedy sketch.

I don't think I've ever mentioned what a gassy baby you can be. You fart something fierce. And while we're on that subject, I'd like to address something else... why do your farts smell so much worse than your poo? The difference is like night and day. Smells like that are obscene coming out of a body so small, as are the farts that are long and loud. Where are you storing all this gas? I'd ask how you were learning to make all that racket, but we both know who in this family is responsible for that...

This month you were once again mistaken for a doll by someone. I'm still trying to figure out why people would think I'd be carrying a life-size baby doll on my body as an adult woman, but there you go. The staggering thing is that it isn't the first time it has happened. Anyway, you're so much cuter than any doll.

Occasionally you're a handful though, and it's like having a hyperactive jumping bean. You want to stand constantly, which can be a bit tiresome. I'm sure you're going to be aggravated at some point though, because the physical therapist wants us to concentrate more on making you do the things you're not so good at, rather than constantly cater to the things you can do and love to do. I'm sure that once your upper body strength matches your lower body strength that you'll be off zooming around the room on hands and knees, because you already get your legs under you very well... something which you've been doing over the last couple of weeks. Sometimes when you have bare-ass floortime I look over at you and see a little arsehole staring back at me, because you've gotten your knees or feet under you and are doing a kind of armless downward-facing dog yoga pose and aiming your butt right at me. I try not to be offended at that... at least you don't fart at me when you're in that position, which is something I suppose.

The physical therapist is making us do baby push-ups and sit-ups with you to increase the strength in your trunk and shoulders. She also wants us to stimulate you by providing all kinds of different textures for you to touch with your hands, and also to try and get you to put more things in your mouth, seeing as that is the predominant mode of touching and exploring for babies. Most parents spend their time trying to move things away from their babies' mouths, we get to stick stuff in there instead.

The difference between this month and last month is very marked. At the beginning you weren't really showing any interest in reaching out for things or grabbing anything, towards the end of December this interest had increased and you were grabbing at our faces occasionally. Now you love to grab our faces, and thrust small fingers up your parents nostrils, or pull our glasses off our faces. You even reach out to objects now, including the little blue-and-green donkey that you got from your opa Tjerk and Diane, you seem to enjoy squishing his crinkly-noisy ears.

I'm so glad you're doing so well Dash! and I look forward to seeing what changes the next month brings.

Love,

Mama

Pictures open into larger versions.

Our little cannibal: