Saturday, March 29, 2008

Let's see, what's kept me away from all but the basic email checks this week?

That's right! The family! The latest set of settling in pains that swept through us as we adjusted to life with two small kids and a full schedule of doctors and education specialists. I find myself envious of families who don't have to run their kids and themselves to doctors every week starting at this age. Don't they normally get a year or two "off" to learn how to adjust to having the infant? But for all of that I really can't say as I am having the troubles now that I had the first time through this phase of parenthood. I'm just learning how to survive, again, on fragments of sleep snatched here and there.

I'm doing well at it, as witnessed by the fact that I haven't given up all my leisure activities. I'm still carving time out of the day to sit and read, to make sure the kitchen stays tidy, time to play with my kids and really experience the joy that comes with all that sleep deprivation and screaming. We're weaning the infant off his NG tube and all the way to bottle-feeds. He's now taken everything by mouth for five days. He hasn't lost any weight, although his gain has been minimal. More importantly, we're managing his reflux and his feeding issue without losing our minds completely or pushing the Toddler off to the side the whole time. Making sure she gets equal time in the day is hard, but that's a priority for us and we'll make it happen somehow.

Tuesday, March 25, 2008

Getting used to things. Again. Moving from parent of one to parent of two is endlessly new, endlessly fascinating, endlessly sleep-deprived.

The events of my last post have passed, as I knew they would. Did it have to be three loads of laundry later, though? I go into this half-awake world of acceptance, where it doesn't matter how many shirts I have to change into. It doesn't matter that I've given up redressing the infant with the food-retention challenge. Infant is snuggled and swaddled in an endless stream of clean flannel blankets and warm clean towels. A pile builds in the corner of stained and slimy t-shirts, interspersed every four layers with another skirt or pair of pants that failed to escape the drama.

His tiny lordship is feeling better now, curled on my lap and looking up at me with the biggest blue eyes I've seen since his sister was this size. He is taking more by mouth, has pulled out his NG tube again, and I'm reluctant to put it back in place until I absolutely have to. Some of that is due to not wanting to put him and me through that procedure, of course. Most of it is purely selfish.

You see, I've come to adore gazing at his little face when it's not obstructed by tape and tubes. Absolutely adore it.

Besides which, he's supposed to be pushed gently towards all feeds by mouth. So we can ditch the tube forever.

Sunday, March 23, 2008

Despite a beautiful dinner laid on by my mother, today ends in ruins, with tears and vomitting. With highly distraught children, screaming. With the Boy being concerned that his stitches just popped during the last cleanup. With me searching out the website for the hospital to just make sure that the urgent care clinic is open 24/7. With setting down the criteria that will be met before I take my second child to that clinic.

Not the way you want to start a week. Not the way to end a sunday.

Instead of an early, peaceful bedtime, I'm running two more loads of laundry, staring at a sink of dirty dishes, and praying that it will go better tomorrow. That there will be nothing but calmness tonight.

Because lord help us all if it's more of what we just did.

Saturday, March 15, 2008

Parenting a preemie. So fragile at times. So precious. While babies are really hardier than a lot of new first-time moms want to trust in, I've heard it gets easier the second time around. The kid won't be harmed if you have to let them cry for a minute while dealing with the firstborn child, who is so clingy sometimes that they feel the need to sit in the exact spot their younger sibling is sitting in.

Among things I thought I wouldn't be saying for a while- Please don't sit on your little brother. You'll squash him like a bug.

Yet for all of that it's amazing how the experience of the first is coming back to guide me. It only took once of the old feed? reflux? fuss? quandary to remind us of the signs. Don't feed this kid more than a teaspoon or so right now, because he's going to puke. If you let him eat too much too quick, he will, and it's better to let that ickiness come up and out rather than fight it every feeding until it's passed through his system. We're not forcing the kid to eat the full feed every time. That leads to spitups, and other things, and makes everyone more stressed. Is it not easier to be laid back? To let it come in it's own time. The kid uses less of his calories snacking in a relaxed fashion than actively fighting the nipple for over half an hour. Not to mention that if he's relaxed and munching there's less spitup.

The sun has barely set. I'm going to bed now. Exhausted and tired and so are the kids.

Wednesday, March 12, 2008

I have washed the syringes, the tiny bottles, the child has been rocked and sung to and soothed and tucked into bed. Tomorrow is another day, today is now mostly forgotten.

Moving his feeds up to take more from the bottle. I try to meet every challenge as it comes, but how to take a full time out from everything else to spend an hour of every three feeding him? We tube more than we want to, we make an effort to make things happen in a good manner.

I'm wondering how the next week will play out. Granted, these are early days yet. It's hard to say for sure what's going to happen in a week when we're all really in the swing of things. I want to say as well that so far I'm getting more sleep with this kid than I thought I would.

Life as a parent of two preemies with eating issues. Hmm. I should have checked my sanity in at the door a long time ago, at least that way I'd have a claim ticket for it.
How is a baby like an oyster? If the baby in question is one of mine, they spend a lot of time in a shell before joining the party. Also: the actual product may be slimier than it first appears.

I mean that in a good way, of course. Really, I do. Oysters are yummy, and my babies are cute even when they are unexpectedly covered in spit-up first thing in the morning. One of the fonder memories from childhood is smelling a pot of my mom's oyster stew simmering on the stove. We loved it and wished the pot would last longer- there was seldom any point in putting it away at night because we would eat bowl after bowl of the stuff, licking spoons and running a finger along the inside of the bowl in an effort to get every last drop.

One thing that turns many people off oysters is the fear of what is kindly termed "food poisoning". That phrase covers a lot of ground, including the Vibrio vulnificus infection which is what someone at risk can contract from raw or improperly prepared oysters. Really, though, if you are not at risk there is very little chance that you'll get sick. That's why you don't need to fear eating Gulf oysters anymore. Dig out those recipes and before you know it you too can be enjoying this tasty treat. As with so many other feared foods these days there's a website set up to reassure you- BeOysterAware is a great source for both recipes and facts about just who is at high-risk for the virus, the symptoms, how and when to seek a doctor's help, and how to avoid the nasties while still enjoying oysters.

Monday, March 10, 2008

We are a family.

My mom is pictured wearing a mask because she was having a very sore throat with cough and had a fever last night. Maybe she's over-reacting, but this kid just got home from three and a half months in NICU. I'm okay with a little over-reacting right now.

The Toddler adores Robbie. A brother! Of her own! A baby! And he has feet, and a head, and a tube that comes out his nose that seems just perfect for yanking on!

Me? I spent an entire work day at the hospital getting things together and signed off on. Left the house before 0700. Left the hospital at 1630. Okay, so that's not a whole workday, but I had a 15minute lunch for crying out loud. This entire week is filled with the followup doctor appts for all of us, so I'm hoping to just keep everyone happy, fed, and wearing clean pants.

Heaven help us all.

Sunday, March 09, 2008

I am still waiting on a baby. Three and a half months after he was born, I'm still waiting on a baby. I want him home already! I want to pick him up and cuddle him and be spit up on and have exploding diapers at midnight.

You mothers out there who read this, you know how badly I want this kid home. Yes, I'm actually looking forward to his exploding diapers. I'm not quite insane over it yet, I refrained from slugging a nurse today. That sort of thing just doesn't look good on the bottom line.

It's an endless cycle. We've got another new tentative discharge date, and I'm scared to say it out loud for fear of jinxing ourselves. I'm scared of a lot of things tonight. I want my baby to come home.

I want to sit with my little girl and my little boy together; I want them both here next week when their father, my husband, gets the Procedure done. I want to move out of this endless holding pattern and get back to blogging funny things.

Soon. Soon I will have some laughter to share with all of you. Just not tonight.

Wednesday, March 05, 2008

We got up to see the baby today. This morning was an upper GI series, this afternoon was a head ultrasound. It seems that my son does, in fact, have a brain. The Boy and I are making firm note of this, as we fear in the years to come we will have grave doubts. Pre-teen years, I'm looking at you. Also Adolescent years. And adult years. Gee, let's just call it the entire rest of his life.

The latest on Robbie is that he's outgrown even the open crib. We went from isolette, which is the highest level of infant containment, that nifty plexiglass box with portholes and special buttons, to a warming table, which is essentially a platform with a blanket-covered mattress and Serious Heat Lamps. Then we got him to take to the open crib, which is a plexiglass baby bucket insert that pops out of a little wooden cart. Think microwave cart, only holding a crib instead of a microwave. And now he's in a standard sized hospital crib, with a mattress that raises and lowers like an adult's except by crank instead of buttons.

All those little things that don't add up. The feeding issues. The growth issues. The slightly enlarged ventricle in his head. The failed hearing tests. It sometimes makes me want to question my sanity in wanting and having a second child, but then I remember that my sanity was lost a long time ago and who am I to second-guess the universal powers that decreed that this was the child I was supposed to have? All these little things that add to a bigger thing and we can't see the shape of the total puzzle yet. All I know is that he's my baby and I can't have him home just yet, but that if we're all very lucky he'll be home soon. I just have to be patient.

There are times I'm sick of patience. I rail against the unfairness of this. In the deep recesses of my heart I'm screaming that this ends soon. That the pressure is released, that my little girl overcomes her blocks with communication, that her disorder can find the right combination of therapies that will let her show us what she's capable of.

I'm running from one special needs child to another. I'm going to be doing this indefinately, with some level of intensity, for the rest of my life. Maybe someday I'll have respite, maybe someday I'll find the right person that I can feel safe leaving the kids with for a couple of hours so that I can leave the house without them. Right now the list of people I can trust them with is depressingly small. My husband, my mother. It's not just that I'm picky over leaving her, it's that when she gets overwhelmed and overstimulated there are only one or two things that work to get through to her.

This too shall pass. I just need to keep smiling and breathing and putting one foot in front of the other. Serenity. Now.

Monday, March 03, 2008

We got there to pick him up and found that the doctor had changed his mind. There are some other minor issues that taken individually don't seem like much but when added all up are enough to raise concerns. Certainly enough to retain the child in NICU and move him back to the main facility for more tests.

I miss him. I was all ready for bringing him home. The house was clean. I was ready. I made his bed and tucked in a lovey, and now there's no baby. The Toddler was the worst, still having meltdowns every time we turned around and clinging to everyone. Made it easier to keep our shit together, though.

I miss my baby. I want him home already. Is that too much to want? Even though I know it's better by far to have these little things worked out ahead of time, it's just so much worse to be ready and all psyched for this thing and then find out it's not happening.
Today is the day. After three months and a handful of days, this is the day my son comes home. It is marked by clear blue skies, partial sun, and warmth. Little songbirds are fluttering through our backyard. The Toddler woke up and was crying in my arms at breakfast time insisting that she was my baby- after all this time we still didn't know how much she understood what was happening. She doesn't like to talk to us, or communicate with us, and there's almost no way to tell what makes it into her head. But now I know that she knows, and as I wiped her tears away this morning it was crystal clear to all that she knows that there will be a baby coming here to stay. And she's a little unsure of where her place will be in all of this; yet I think that everything can be dealt with as long as there are tons and tons of snuggles and reassurances that she's still our baby as well. No one can replace her in our hearts and affections. Parents' hearts are big enough to hold all of their children.