A Day Like Any Other

Yesterday after an uneventful morning, Max did his bid'ness after eating so I tossed him up on the ol' changing table, where he swung his arms and kicked his legs with abandon until Bug was finally annoyed enough to move.
I took off the diaper, cautiously, having learned. He let loose with a squirt of pee, so I tossed the diaper back. Ha ha. I'd outwitted him.
After a pause I checked again. Cease fire. I left the diaper open and reached for the fresh one. A light stream arced up and hit his shirt. I dried his skin and put on the new diaper then changed his shirt. I picked him up in order lay out his NASCAR driving suit and his leg felt wet. I dried off his leg only to discover that now his back felt wet. I cautiously opened the diaper. Squirt. I threw the diaper back and waited. I checked again. Ceasefire. I took the diaper off and reached for one dry on the outside and inside. This time an even higher, more majestic arc, golden in the lamplight, dousing his legs and the changing pad. I let him go. You can't stand in the way of greatness and clearly he was toying with me.

O.K.

I ran him a bath.




Later, he took two naps in the crib, one for less than 30 minutes, the second time -swaddled- for an hour and ten minutes. This sleeping on his own business is a major new development since approximately Friday. He has begun to let us know that the sling isn't the perfect answer every time now, but neither is the crib. We're all trying on new sleeping arrangements and it seems to be working. Sort of.

Jerking awake, he found himself alone and hungry and launched into a full scream for a while. A long while. We let him cry in the crib, our arms, the sling, and tried them all again and finally settled on the sling, where he subsided into a restless sob that tapered off slowly until he finally slept. And slept. Past his dinner time.

It goes in cycles. A few days of happy Max, and then days of this. Finally the gas or the hunger or both wakes him fully, and he is hungry, long overdue. Meals are hard because he is distracted by everything. He eats adequately but cannot quite focus, with that supplement hose always causing trouble. He works hard. So does G. This goes on in bursts all night. Wake eat sleep wake eat sleep. Not every night, but most nights.

This goes on too:






And now the sun is coming up and everyone's asleep but me. Finally. How can you beat that? Goodnight.

I re-read yesterday's post after getting a couple of encouraging emails and felt like maybe I overstated the situation, or our mood. So let me just say how much we appreciate everyone's patience with what it seems to us must appear as nervous whininess. We are fully aware how lucky we are, and that many babies and families face far more daunting challenges. Sleeplessness will make everything seem harder I think.

We are not, however, satisfied with good enough... how can we be when Max lets us know he's in pain? We are new to this and are scrambling to learn what others know already (what did people do before the internet?), not to mention we both count obsessive behavior as a character trait. But there is also in us a certain desperation: we have been blessed with this one amazing child. We have one chance to get it right. It consumes us.

The good news is that Max is almost 3 months old, and he's happy more than not these days. As we figure out more about what he and Garn can and can't eat, he improves bit by bit. At around 4 to 6 months we can likely start some solids, and that will help a lot with vitamin intake and a healthy digestive system. Most of all we're figuring out that parenting is really about weighing pros and cons and picking the best option and realizing that what's right now may change later.

People ask how it's going, and we try to be honest. The alternative is silence. So thank you all so very much for your patience, love and support, your interest and concern for us and for Max. We do know everything will be o.k. It's just that sometimes in the middle of the night it seems darker than it really is.

"I am on sentry and stare into the darkness. My strength is exhausted as always after an attack, and so it is hard for me to be alone with my thoughts. They are not properly thoughts; they are memories which in my weakness turn homeward and strangely move me."
-from All Quiet On The Western Front

Stability?

Why, you must be thinking, has it been so long since the last post? Max turns 10 weeks old today. But Max has continued to be, as we knew and as has been expressed by all the professionals and other parents we share this with, an exceptionally challenging baby. He's very alert, very interactive, and when he feels good, a very happy boy. But he has not been happy most of the time. We have however finally begun to track down some of his issues. We started recording almost everything: how much Max eats, when he ate, how much milk G can produce, everything. And we started asking very pointed questions of the health professionals we've been taking him to see. We discovered two main issues.

1) Max has a lot of stomach acid, making him uncomfortable and unhappy. He's on baby Zantac now and that has helped tremendously. He seldom now just sits and cries for long periods. This has helped his ability to focus. Everything has improved from eating to sleeping. It is tempting to feel guilty about not figuring this out sooner and we've indulged in guilt, along with a lot of other strong emotions. But in the end such selfishness does nothing to help Max so it must be cut loose. Besides, who has the time to figure this stuff out when their baby barely sleeps and cries 70-80% of the time he's awake? Not to mention that it takes multiple conversations with multiple health care professionals and others to arrive at even a theory of what may be happening. This is very frustrating.

2) He has, as we knew, a lazy suck. Some kids apparently simply do not develop the 'natural' technique necessary to remove milk from the breast. After finally seeing a lactation consultant who helped us measure G's output, we are now assured she is producing nearly the amount of food he needs, and could produce more if his suck were effective (though it should be noted NOT enough, which is why we started formula in the first place). So we've purchased a 'system' to help Max learn to suck better. Simple and expensive ($50 for a plastic bottle and hose system that hangs around mom's neck), it rewards good technique with more food. If he sucks well, he gets to eat more. When his suck sucks, he doesn't. It used to be he would simply get frustrated and fussy. Now after one day (about 36 hours), he has improved quite a bit. We still have appointments with an occupational therapist (Max's occupation being eating) and more visits with the lactation consultant but things are looking up. Everything we've read says that not only is breastfeeding good, but that in fact any amount of formula is actually quite hard on a baby, whose underdeveloped body must work very hard to process it. So while his system is taxed trying to process formula he is also not receiving as much as he needs of the multitude of immune system building blocks found in breast milk. Our goal remains to keep him eating only breast milk if possible, while still getting him - and us - some rest. It is unlikely, though, that we can feed him solely breastmilk due to Max's suck, G's flow, and his appetite. The downside specifically is that formula, containing proteins that are harder to break down than those in breastmilk, causes perforations in his intestinal walls, allowing the proteins to leak into his bloodstream, leading to allergies and other problems. In addition, it causes the painful gas that Zantac can't help (since it's for stomach acid). We're more likely going to have to supplement with formula no matter what, so we're looking at probiotic supplements to aid in his digestion. Think of it as Activia yogurt for babies.

This is complicated by other factors however. We're also looking at having to give him some immunizations in preparation for day care when G goes back to work in about 3 weeks. This is sooner than we had wanted to put him through it. Many people report that after the shots their baby cries for up to 24 hours. It breaks our hearts. And in truth we really don't want to have to send him to day care. This would greatly complicate our ability to keep him on breast milk and would simultaneously expose him to illness, but we can't really afford not to have G go back to work. With the added cost of including her and him on BabyDaddy's health care, we just can't swing it unless BabyDaddy takes extra work, which G doesn't want, and which we're not sure I could find anyway in the sinking economy. In many ways he'd do fine we think, but he's probably just not quite ready when we consider how he's eating even now, at 2 1/2 months. He still won't sleep by himself or for very long like many babies. His need for constant contact and his many other troubles continue to make this a marathon for us, and everyone's exhausted. Except Bug the cat, who has been enjoying having us home all the time. She's exceptionally well rested, and really likes the diaper changing pad. She must now be awakened and removed almost every time we have to change Max.

It would unfair to write all this and not mention that overall there has been a lot of improvement. Max laughs and smiles almost every day now. He almost never did before. We have some hard choices to make. Some will be made for us and we'll have to swallow some bitter pills. But Max's issues are improving little by little and he remains one of the best people we know. So life is good.

It has been a while since the last update. Max turned 8 weeks old last sunday! 8 weeks! I guess they all do that. But it feels like a real accomplishment. Max is a really alert baby, and he's interactive and smiles a lot, but he also continues to have issues. Sleep continues to mostly elude us. G hasn't had a stretch of sleep more than 4 hours since he was born. Actually 4 hours is a rare treat; usually she only gets an hour or two at a time. She's getting maybe 5 or 6 hours of sleep every 24 hours. Max is getting only slightly more. I'm getting about as much as Max. Is the problem that he isn't getting enough to eat, so he doesn't sleep well? Or is he not sleeping so then he has trouble eating? Today was his 2 month check up with Dr. Mackey, and she assured us it's some of both. While he has gained weight he hasn't gained as much as she'd like, so it looks like the diet is the egg. Or the chicken. Someone remind me which came first. We'll be going back to supplementing his diet with formula. We're hoping he doesn't give up on the breast, but getting enough to eat is the most important thing. Hopefully this new feeding plan will help that. At least I'll be able to give him a bottle and let G get some sleep.

But that's our obsession, and things are good overall. I did have to ask someone yesterday what month it is. Seriously. Needless to say we have not been focusing our attention on getting pictures taken, but we do have a few. More later. I think.

Oh Max, we love you so much. We will walk you around the house as long as you want, and you can cry as long as you need to. You're the most amazing little guy, and you're so very sweet. When you smile you light everything. I can't say it enough: we love you so, so much.

Socks:


Max and Mommy:


Bright eyes:

This goes out to Sue, who brought a tear to my eye today simply by saying:

"Dylan's birthday today was a great success. We have pictures of Justin sitting on his father's head, grandpa reading stories, and Dylan with his hands in the birthday cake frosting. How can you beat a day like that.
Relax. You too will sleep one day. I hope it may happen soon."

What the hell?! So for having the power now as then to stun me with her wisdom, I send this out to Sue, and to Jeff and Dave and Mary and mom and dad and little babies who smile when you kiss them.

Good evening. This is your Flight Control Captain, Max Corson. Thanks for flying with us today. Our airspeed is just under 7 weeks and we're flying at an altitude of Cloud 9.
I wanted to let you know that we've got a little more turbulence ahead of us, so I've turned on the fasten seat belts sign. We'll be out of it in no time, but until then, please return to your seats and fasten those belts.
Sit back, relax. We'll have you on the ground just as soon as we can.

Crew take your seats.

Missives continue to pour forth from South Dakota, where Big Daddy Whitebeard and his ol' lady, Sue, continue to whimper about a lack of updates to Max's blog. One must assume that in their luxuriant grandparenthood they have misplaced their memories of exactly how much time a baby demands, especially one such as Max, who though loveable is fussy. He does not deal well with being put down by himself. He needs to be near, and even then doesn't sleep as much as all the experts say babies sleep. Not even close. Which means we continue not to sleep much either, though it must be revealed that Garnette suffers more than me in this aspect. Because although I can take him off her hands, she has the power (actually a pair of powers) to soothe him. Mostly.
So we've been leaning hard on Kim and Todd for advice and emotional support, and reading a lot on Dr Sears' website. Dr Sears has a section about fussy babies, how some babies are simply wired differently and do not transition well from womb to world, from wake to sleep. Max does however transition quite well from quiet to loud. In fact, by Dr Sears' measure of high need babies, Max fits every marker nearly perfectly. He just needs love and attention. We can do that. I think. This morning I asked if there were any convents nearby where we could drop him off in a basket. Ha ha.
Few photos these days. There's not much to take photos of anyway except more of crying baby and of tattered parents.
And yet through this veil of desperate exhaustion we know there are good days as well as bad. The good days are great. His smiles are fantastic. Even when he wets 4 or 5 outfits in a 6 hour span, a baby smile can make all the shit worthwhile. But still it's tiresome. Stress filled. Exhausting.
Garnette got a nap today when he finally collapsed in the sling (the only place he really relaxes) for 3 hours or so. Later she told me she dreamed that she was helping a friend of ours with her baby. She was having Garnette help her "express" milk from the breast. Garnette was milking her friend. And the milk poured forth as from a tap. Considering the troubles we've had in this area, such dreams are horror and humor rolled into one. Just like real life.