37-11

Hooray! He's eleven weeks old today.

Though we have a sort of hybrid newborn/one month old, in behavior. He's a newborn because he's home for the first time, and he's small, and he needs to eat a lot. He's a 4-weeker because he doesn't poop every day.

OK, so I know that hospitals don't send you home with babies and instruction manuals, but when they send you home with a chronic condition that needs to be managed, don't they tell you how to manage it? I think that they gave us some sort of binder two and a half months ago about caring for our new baby, but we weren't caring for him, and it wasn't like I had time to read ahead. No one told us, for instance, that he would not be pooping every day. That it might be more like every two or three days. They are obsessed with input and output in the hospital so, naturally, so are we. We did not find out until our pediatrician visit yesterday morning that his behavior is normal. We worried for more than two days about our little man's inactive bum because they worried about it in the hospital.

When he pooped last night, a big sticky mess of army green poo, we applauded. Wouldn't it be great if our mundane achievements were met with such enthusiasm when we were adults? Babies get love for the most bizarre things.

I want him to be regular, though, at least in the intestinal sense, and as he's a breastfed baby, he should be. At the hospital, they were plugging him all up with Beneprotein and Similac Human Milk Fortifier in his bottles, and they sent me home with Similac Neosure, instructing me to fortify two to four bottles a day for him to bring his breastmilk up to 22 calories instead of 20.

I didn't want to do it, and I vowed not to do it. But I was over talking to them about things like this, so I let them do their spiel, took the can with the demon shark-eyed bear on it, and nodded like I understood. We decided to wait and talk to the pediatrician, and then if it seemed absolutely necessary, I would find a supplement that was more to my liking and not chock full of corn syrup and additives and not made by a company whose name implies that they are similar to lactation.

Well, the pediatrician we found in half and hour while sitting outside a hospital coffee shop turned out to be a lactation guru, married to an immunologist, very experienced with preemies, and just all-around cool. She said that I did not have to supplement, we'll check his weight at his next appointment, and if he's not gaining, then we'll talk. She did say that I have to do the iron and vitamin D supplement, though, and it's downright nasty.

Our Little Man was a champ at the doctor's office. He got to be weighed all nekkid, which they did not do at the hospital. In fact, the last time they weighed him was in both his diaper and his apnea monitor belt. Now we can start from scratch at 5 pounds, 13.3 ounces and 18.5 inches. I'm going to talk to their lactation consultants and get him off the nipple shield when he's ready, which the doctor thinks should be soon because "he has a big mouth." Then the boy will go back in about three weeks for his second round of our alternative immunization schedule and a weight check.

Tomorrow will be the end of his 37th gestational week, and he's considered full term. Really, he just looks like a small, normal baby. He has a strong neck, a lot to say, and an almost adult ability to fart.

We are very proud.

note to pregnant people

If you are pregnant and thinking of having a preemie because, you know, they are smaller, and it won't hurt as much, plus, someone else takes care of your baby and you can still work for the first couple months, I would advise against it.

I would venture to say that it is practically impossible to have a baby in the hospital, pump breast milk, work full time, and keep it all together. Unless you are rich and can hire someone to clean the house and cook for you. But if you are rich, you don't have to work, and you could even hire a wet nurse, but if you didn't have to do all the house stuff plus you didn't have to worry about money, then I guess you could just sit at the hospital all day and bond with your baby and your breastpump.

Normal people don't have that luxury. We have to work because we have to have money, and we have to work because we have to have health insurance, especially with a baby in the hospital who will cost upwards of half a million dollars by the time he comes home (he's much less expensive now).

When you try to do too much, say, when you seem to think that you can handle anything and you are some sort of super hero, then things will slip through the cracks, and nothing that you do will be up to your standards. Then you will feel like a failure and like you have pretty much let everyone down, and that's no good. Notice how I have used the future tense and second person singular to make it sound like I am not talking about myself?

It's too much. It was too much for me. I could not keep up with new stuff at my job, and I could not keep track of the things I had been planning on tackling over the summer, while I was pregnant. My mind was still scattered from being pregnant, and it was further dissipated to the winds when I was split between many different tasks. I tried to hold it together and present myself to my colleagues as OK, maybe a little tired and slightly overwhelmed, but still OK. It's easier to believe it's true when you are acting like it's true.

Now that I am home with the baby, I am the exact opposite of most new moms: I find that I have time, and I am totally relieved. I am not going to the hospital, and I am not pumping six times a day. It's bliss. I can think about tasks in an organized manner, and I can get things done when he's quiet or when Pete has him.

Like now.

vaccines...

* 5/18/2010: Please note that this post was written during my Great Vaccination Fugue, from which I have recovered. Finn will be getting the CDC recommended vaccination schedule from now on.

I have always been a steadfast believer in the value of vaccinations. Then I had a preemie. I did not know what the medical approach would be regarding a vaccination schedule for Finn, and when it finally came up, I was unprepared for my reaction to the decision.

I was a wreck. I did not know what I wanted to do, and I did not know where to look for information. I don't know that I believe a lot of the hysteria about vaccinations, but I don't think that enough research has been conducted into the long term developmental effect of the many shots that kids are receiving nowadays.

And the staff at SCN were not helpful. They just kept asking if I had made a decision, but they never asked what they might be able to do to help me. They just made me feel afraid of what would happen if I didn't have him fully vaccinated. Finally, I found a book that went through the CDC recommended immunization schedule and talked about the risks and benefits of each shot. Based on my reading both in that book and elsewhere, and also considering my own reasoning, I finally submitted my concerns to the doctor:

"8.07.08

We believe in being responsible stewards of public health, and recognize the importance of vaccination programs in the eradication of disease, but we find that the literature and research into the effectiveness and long-term safety of vaccines and their ingredients is lacking, especially when it comes to premature infants. We want the best for him, which is why we are putting a lot of reasoned thought into this decision. None of the concerns that we are listing below have been assuaged to our satisfaction.

• Given his risk factor (extreme prematurity), we are concerned about the introduction of vaccinations containing multiple ingredients including chemicals, human and animal tissue, and bacteria/viruses into an underdeveloped immune system. It seems that at the very least, the vaccination schedule should be altered for preemies to their corrected age.

• Hepatitis B seems unnecessary for a newborn as its incidence in infants is extremely rare and considering that we are immune and do not have any risk factors for the disease.

• Given the FDA assertion* that premature babies shouldn’t receive more than 10-25 micrograms of injected aluminum at any one time, it concerns us that the five brands of vaccinations listed make for a combined total of 1000 micrograms of aluminum.**

• The DTaP vaccine listed (Infanrix) has the highest amount of aluminum of the three available at 625 micrograms. Is Daptacel available? (this brand still contains 330 micrograms of aluminum)?**

• Rotovirus was not listed on the vaccine brand list we were given, but it is listed on the CDC schedule on the handout we were given. Is that included in this round of vaccinations?

* document NDA 19-626/S-019

** according to package inserts"

His doctor took the time to do some research, and she listened to us. We finally decided to go with the DTaP immunization in the hospital, but we requested the shot with the lower amounts of aluminum. We then decided to go ahead with a staggered schedule of HIB and Pc after he was discharged. Our doctor agreed that this was a fine plan.

The day that he had his shot, I was a mess. I was very worried about the whole thing, and I wished that the situation would just go away. I was partially reacting to all the stress I had been feeling since we had moved to Special Care, and I was feeling very out of control when it came to my son's care. This was just one more thing in a long list of frustrations. The bottle damage, I figured I could undo with time and persistence. But a severe reaction or long term damage from immunizations was beyond my power, and once the shot was given, there was no undoing it. Perhaps I was overreacting, but it doesn't matter. It was how I felt at the time, and it seemed like a lose-lose situation. Another mother in the unit had watched her baby go back on the cannula and onto antibiotics after she felt badgered into giving her daughter the whole round of shots.

Finn was fine, of course. He did not even have any apnea spells, which are apparently a very common side effect for preemies. Looking back, I don't think there was any other way for me to go about it, and I think we made the right decision. There will be many more agonizing quandaries ahead for us as we raise this boy; this was just the beginning. It's a learning curve, and we've learned more already than I ever really wanted to know.

word/not word

I have never been a fan of verbing the noun, and even in my dismay over the pushing of the bottle on my infant, I could not help but notice the use of the word "bottling."

This and the word "officing," as in "Where are you officing?" just need to be stopped.

Oh, and "growing a business?"

no. Just, no.

This baby is awesome...

Hands down, best baby I ever had.

We're well into our second day of having our actual baby in our actual house, and... hang on...

(little bit of sleep fussing from the boy.)

Had to go and check, of course. He makes a lot of noise, but now that I think about it, he seems to be settling down somewhat. Right now, his co-sleeper is in the livingroom, and we've been sleeping in shifts. The overnight at the hospital was... not relaxing, so we are trying to make up for it. It was wonderful to be alone with our baby for the first time, but it was not like being at home. We did not sleep at all, and then Monday was... not relaxing. But none of the discharge experience was. It was remarkably frustrating and haphazard, especially considering that they do this all the time. Nurse Bev went over our discharge papers, containing some pretty important stuff, while I tried to breastfeed on 1.5 hours "sleep;" the doctor called me at 11:00 a.m. to tell me that we could not send baby boy home if we did not have a pediatrician assigned to him. Makes sense, but when dealing with frazzled parents, would it not be a good idea to have, oh, I don't know, some sort of What to Expect When Discharging packet? Seems like they may as well have just dropped him off in a basket on our porch.

I was to the point where I would not allow Pete to leave me alone with any of the staff. I just could not deal with it. The last straw was when Pete was heading out to the car with the carseat, and Nurse Bev said "Where are you going with that?"

"To the car."

"Oh no you're not. He needs to leave in that."

"You mean, I can't carry him out of the hospital?" I said.

"No."

Why?"

"I don't know."

Even though I had seen at least two babies leave the hospital in their mother's arms, one just an hour before. But it was enough. Fine. I just want out of here. I could not fight it anymore. I can't carry my own goddamn baby outta here? Fine.

(Max just jumped up into Finn's bed for the first but, I am sure, not the last, time.)

It was so odd, leaving there. After two and a half months, we just sort of wandered out with our baby to a couple of weak "congratulations" and waves.

Of course, it was all worth it. The past two days have been magnificent. There will be plenty of time in the future to lament our lack of sleep; for now, we are just marveling at the fact of being together as a family and enjoying the freedom granted by the comforts of home. Picking him up, changing him without anyone hovering over us, and sitting on the couch watching Star Wars while he sleeps on a pillow on Pete's lap are all luxuries to us, and we are reveling in them.

The weird thing is, this is not weird at all. It is totally natural to have him here and be taking care of him. Though many times a day, we stop and say "This is our baby. We have a baby."

And what a baby he is...

Baby, you can drive my...

Finn was born when most people are making decisions about pediatricians, day cares, vaccinations, circumcisions, and other life transforming issues. Once he was here, all those decisions were pushed away as we waited, worrying that he might die. Then, we were told that we could expect him to be in the hospital for 100 days or his due date, and that seemed like a long way off. We developed a routine based on what we had available to us, and though things were hectic in their own way, it was pretty smooth sailing with an even rhythm to the waves. There were occasional times when the stress would foam over the decks, especially for me, and then I would freak out, let it go, and start all over again. But we knew what to expect at the NICU; we liked the people, and we felt secure.

On Monday the 28th of July, he was transferred to Special Care, and we went from sailing to speedboat. To flagrantly mix my transportation metaphors, it's been a high speed train to Babyville from day one, and not a nice, nonpolluting, highly efficient train, rather a smoke belching, clunking wreck, trundling along rusty tracks through an uncertain and indifferent landscape.

It's rush rush, push, shove, what do you want to do about this, and what do you want to do about that, and do this, do that, blah blah and blah. When we were admitted, the nurse told us that we would be learning, which would make you assume that they would be teaching.

Now, my dad is a professor, and my mother is a nurse. I have worked with some excellent educators who really care about students. What I experienced at SCN was not teaching unless teaching is someone ticking through a checklist and talking to you about bulb syringes while you are changing your baby's diaper or going over a discharge form while you are breastfeeding your baby after being up all night for the first time with him. Oh, and while that baby chokes on a big gulp, stops breathing, and turns blue. Teaching is awesome. No wonder kids love school so much.

The last week of our stay at SCN was terrible. Pete took it better probably because he had to, being that I was so miserable and tense. Someone had to hold it together.

I can't understand why it had to suck so much, and I am guessing that many parents feel the same way. They must assume that everyone will be overjoyed to be told on Tuesday that they should expect to take their baby home on Saturday, but the nurse in the apnea program said that 90% of the familes she sees are just like us: rushed, angry, shell-shocked, and filled with stress.

I felt like I was in the checkout counter at a busy grocery store, and I was fumbling with my purse while a line of mad customers built up behind me. We were shuttled around, rescheduled, scheduled, stood up, bombarded with information, and pushed to make snap decisions about important things.

I did not want to give him bottles, but I was made to feel as if I was being cruel because the longer I held out on bottles, the longer they would have to leave the feeding tube in, and "that's cruel, don't you think that's cruel?" "You want him to go home, don't you?" the lactation consultant said.

No. I want him to stay here, consuming resources in this disposable, cold environment, out of my control. Of course I wanted him home; that was never the issue. I was just trying to have some say in the things that I thought I could control. In the end, I was just so ready to get him out of there and away from them that I just wilted and nodded or made Pete handle it. Once we got him home, it would be up to us.

and thus begins The Long Awake...

or, blogging with one hand.

We're home, all of us, and what a week it has been.

Suffice to say, I have a lot to say, and I will get around to it.