Saturday, December 24, 2005

A Christmas miracle... when your infant son's hemoglobin level goes from a dangerous 7.5 to a stable 9.5 in a matter of two days. Little J will be with us for Christmas. Peace and love to all of you and your families too.

Friday, December 23, 2005

why I want to go hide under a rock

J's blood tests came back, and he is even more anemic than before. They test different components of the blood, and they can tell the epogen is working, just not enough. They're going to test him again tomorrow (Christmas Eve), and if his level dips too low he may be headed to a blood transfusion. Merry f-ing Christmas. I can't take this anymore, but I have to because I'm the mom. I hope I have good news to report over the next few days, but I'm not feeling very secure at the moment.

Thursday, December 22, 2005

how we are

J - still yellow as a banana, but back to his old self, eating well and very alert and giving us the evil eye.
M - a little on the pale and sleepy side. We got his blood drawn today for anemia, just to be sure that he is not having the same problems as his brother.
SP - trying to get all of our stuff in order- finances, car rentals to get back and forth to all the doctors, insurance, etc.- while checking in at work. Holding up well but tired and stressed of course.
me - constantly worried about pale faces, runny poop, sleepy babies, and our many doctors appointments. Happy about my two cute babies. Exhausted from worry and running around. Unconvinced that Christmas is actually in 3 days.

Monday, December 19, 2005


Just so you know, I'm still scared.

Our schedule

Visiting nurse comes to show me how to administer epogen shots to J.
J goes for a follow-up to the pediatrician. She is concerned by my comment today that he is a little pale. May draw blood.
Both boys go for bilateral hip sonograms, to check their hip alignment as a result of having been over-crowded in utero. (As I've said before, boys, you could have expanded out to the side to give yourselves more room. Just a thought for next time.)
J goes to the endocrinologist for another couple of tests- thyroid and some stress hormone level.
J goes to the hemotologist.
We get ready for Christmas. (For the record, we haven't had time to buy a single gift. I guess I'll be giving people coupons for jokes and hugs.)
We host Christmas for my parents and my sister. (Better figure out what to make and get the groceries delivered. No turkey this year- too much work. How do BLTs sound?)
Monday - Tuesday:
My sister hangs around. She is out from Colorado for the holidays, sans partner. She will be meeting the boys for the first time.
I go for an overdue post-partem OB appointment and hopefully shop for some pants and shirts that actually fit. (My old clothes are too small and maternity clothes are too big. I have plateaued and am basically left with being naked as my best option right now. -And that ain't pretty, what with the stretch marks and big jiggly pouch of skin and fat that just hangs there. Egad.)

Sunday, December 18, 2005

J came home.

J is home again. He has considerable anemia and is being treated for it with epogen, which seems to be working. He will be followed by a visiting nurse tomorrow, the pediatrician on Tuesday, and the hemotologist on Friday. This will continue for a while, I think. He will also have to follow up with the endocrinologist if some of his tests are still coming back borderline. I'm glad we discovered that his anemia was bad, because anemia that exceeds the typical levels for babies and premies can put strain on the heart if left untreated. He's already developed a little heart murmur because of his anemia, although no one is too concerned about it. We are glad to have him home, and rather than resting on our laurels or worrying too much about the future, we are staying in the present and concentrating on loving and helping him feel better. And it's the perfect time of year for such a quiet celebration. Having my new family together after being scared to my wit's end finds a perfect complement in the holiday season's joyful songs, pretty decorations, and above all its hopeful, humble, and grateful messages.

Thursday, December 15, 2005

From the NICU to the PICU

J had to go back to the hospital on Saturday due to looking white and being lethargic. He went to the peds emergency room and then the PICU. As of yesterday he was released into the regular pediatrics unit. He has his own private room with a TV, phone, and bathroom. Being 5 weeks old now and needing his privacy, he is very pleased about this. The hospital he is in now in close to our home, fortunately. I have mostly been staying/sleeping at the hospital with him while SP stays at home with little M. Last night we switched, just to add a little variety to our lives. I am coming to you live from my apartment.

They have run all kinds of tests on J, which is both scary and relieving. At the other hospital they had a "wait and see" sort of attitude and ran very few tests. That was because they blamed everything on him being a premie and assumed he would grow out of it all. But his jaundice has lasted and even increased, leaving doctors to believe he might be too anaemic, which could put strain on his heart and lead to other problems like apnea. They found out that he is indeed quite anaemic despite being on iron for some time now. There are some other possible problems too, but that seems to be the main thing right now. This is common for premature babies, although we can't be certain until we put him through a round of epogin as to whether or not the cause is so simple. We hope it is. If the drug was not working, that would indicate that his marrow may not be working right, which would point to some other condition. Epogin does work for most babies, though, so we have reason to believe that it will work for him and that the problem is somewhat simple. The drug should start working within the next few days. If it does, he can come home soon and be followed for this and a few other things by our pediatrician.

The night we had to call 911 was very scary. I felt so terrified. We had to decide whether to let them give him a spinal tap, and I felt so much weight of responsibility combined with the burden of ignorance that I thought I would just competely fall apart. But you can't do that at these critical moments when you are a parent. It was the first time I understood some of what my own parents have gone through and how it has shaped them, and been able to step back from judgment. I had my hour of panicking and thinking how it was like a bad dream that he had just come home from 4 weeks in the hospital and was there again, only now it seemed like we could no longer say, "He's just premature;" now we had to ask ourselves what else might be wrong. But after that hour, and even during the process of it, I knew that the primal fear was not helpful. I had to get myself in it instead of looking from the outside and thinking how bad it was and "poor me" or even "poor him." That motherly, tough-as-nails, determined strength had to take over, and it did. So after this is all over (and let's hope there will be a point some time soon when we can indeed declare this series of events complete), you should expect a post in which I completely fall apart. Just not right now.

On top of this, my driver's license expires on Saturday. If I don't go to the DMV and renew it, I will have to take the driving test again. So I got a friend to come over and watch M tomorrow while SP goes to the hospital and I go to the DMV. Can you imagine how much more irritating the waiting at the DMV will be, knowing I have a kid in the hospital and also feeling my breasts fill up with milk and throb, unable to feed or pump? Better load up my flask and tuck it into my garter.

Thursday, December 08, 2005

Peace and Chaos

I walked down the street this morning to go to the bagel store, two blocks away. I realized suddenly that I haven't felt so free in such a long time - free of physical burden and free of worry. It was a beautiful thing to be out of the house for just 10 minutes with my old self again. She is pretty awesome.

It is so nice to have both of the babies here, even with all the peeing on us and crying in tandem. Admittedly, SP and I did not get much sleep last night. We could have predicted that I guess, what with two month-old infants to change and feed at regular intervals. They let us sleep from 7:30AM - 10AM without interuption, though, which I thought was very considerate of them. We have never been so grateful for coffee, save for post-bad-hangovers perhaps.

The worst part of being up with them seemed to be that I felt I would fall over on them while nursing. I was so exhausted and just couldn't remain alert, the same thing I experienced last week with M alone. I need some stimulus. I think I need to try music or TV in order to pay attention to what I'm doing with them in the middle of the night. This is especially important while feeding J, since he must be reminded sometimes to keep breathing while he eats. Yes, I am aware that many people think breastfeeding is a tender bonding experience between mother and child that should not be tarnished by outside diversions, but come on. I'm feeding twins. Do you know how many feeds that is per day? Let's just say that there's plenty of time for all the tenderness.

SP went in to work this afternoon. Fortunately both the babies are napping. I am going to get a little shut-eye, too. I also had a little time to put some things away. That's it for now. Nothing at all exciting to report to the outside world. But then I guess if you've read this far, this must have held some interest for you.

Wednesday, December 07, 2005

They're home, they're home!!!!!

The title says it all. In a surprise twist of events, little J was discharged today! And that means we can now live some kind of a normal life, together as a family. And first on the agenda is a long nap for all of us. The boys have already begun, together in their crib. They seem very natural and content together. So perfect. Now SP and I are ready to sleep off all the stress and weirdness of the past month. I am elated and yet it is covered with a sort of numb disbelief. I think exhaustion has taken its toll. Oh dear, they are both waking up and whimpering. More later.

PS- YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, December 06, 2005

The malocchi

Things have improved a bit since I gave into the idea that I don't have to be everywhere and do everything for everyone. J will survive without me going to the hospital every day, though I still want either SP or myself to visit him at least once daily. And he is in fact getting closer to being healthy enough to come home. We don't know how close, and we don't want to jinx anything with assumptions or guesses, so we'll just leave it at that. That's life in the NICU. You never know whether to bring a bag that contains your baby's "going home" outfit, or whether to make plans to spend the holidays at the hospital.

In other news, M and I have gotten to know each other a little better in the past few days. He's a terrific little guy. Among his talents is his ability to baaaaa like a sheep when he is drifting off to sleep. He can also whinny like a baby horse when he is crying. Anyone need a baby who does animal impressions for their next event? Anyone? Our rates are very reasonable. Speaking of making money off of your newborn, SP thinks that J could be a baby model because of his very round face and fat little cheeks. I would have to agree, but I worry about his eyes, which stare at you with such intensity that you might think he's giving you the malocchi (evil eye), and perhaps he is. I have a feeling he didn't like being sat on for eight months. Perhaps that experience shaped his attitude even in utero. Can you blame him?

SP has proven to be a great dad so far. He is very loving and intuitive with the babies. What amazes me is how people give him such props for being a good dad. For example, I was going to the NICU all day every day for a few weeks, and none of the nurses ever commented to me on what a great mom I am. He goes there without me for a day, and they are all telling him (and me, the next day) what a great father he is. Also, when they ask who is taking care of M while I'm at the hospital with J and I tell them my husband is, they are shocked that I would trust him with my son's care. Hello! I don't think it would be a good idea to have a baby with someone you couldn't trust to care for it, do you? There's no one else I feel more comfortable with leaving my son. What a weird, backward world this is. But anyway.

Saturday, December 03, 2005

Ramblings of the baby-crazed

SP has given me a break from the hospital by going in to be with J for a couple days while I stay home to bond with M and get organized. Another reason that it worked out this way is that J can't seem to get rid of high bilirubin levels in his blood (the thing that causes jaundice), so they're putting him on formula for 48 hours to test whether breastmilk is the culprit or whether it's something more serious. So SP can give him bottles and bond with him since J can't breastfeed right now anyway. It's not that the doctors think breastfeeding is bad; it's just that it can exacerbate this bilirubin problem because of some enzyme in breastmilk that the liver has to process (I think). If his bilirubin levels do not go down with formula, we would have to look into seeing whether his liver is working as it should. An endocrinologist has already looked at him and said he seems okay, but we have to make sure. This problem has gone on for a long time now.

Anyway, I'm really glad to have a break from the hospital even though I miss J a lot. I couldn't stop crying on late Thursday night and felt like I was losing my mind. I've been stretching myself so thin lately but not knowing how not to. I've felt like I can't be there for J in the hospital enough, and at the same time like I'm not bonding with M at home the way I'd like to. I even felt guilty because I felt I was preferring J over M, because J is not completely healthy yet and therefore is in more need of my attention right now. Having time to spend with M has been good because I can appreciate him and love him without being too rushed or sleepy.

M had his first doctor appointment yesterday and is doing well. He and his brother will have to go for hip sonograms, though, because they were cramped inside of me and it led to a little concern about their hip placement. It doesn't look like there's any severe misalignment, but there is a little bit of a click. So I guess if there was a problem they'd have to wear devices to help correct the hip placement for a while. I just can't worry about that right now, though. I have enough other things to worry about. If anything, it makes me feel less guilty that I couldn't keep them inside longer, since apparently they were already cramped at 34 weeks, poor things. I guess everything happens for a reason. I guess they knew what they were doing in trying to get out early.

Well, M is waking up, and it's time for another feed. I've been so exhausted that I've apparently been sleeping through my clock's alarm in the middle of the night, a true first for me. We're supposed to wake him up every 3 hours if he doesn't wake himself up to feed. This is because he is a low weight for his age due to him being a premie and needs more nourishment than the average baby right now. Generally he wakes up on his own. If he doesn't wake up, SP gets him and changes him, and then he's alert and ready to eat. But I just can't believe I'm sleeping through my alarm. SP has always been the deep sleeper, and I've always been the one to wake up at the drop of a pin. Now I only wake up if M cries, not for anything else. And the worst of it is, SP and I were so tired that we apparently both slept through the 5AM alarm this morning, as did M. He woke up screaming at 7:30AM, not having eaten for 5 hours. Oops. I truly think we need an industrial-strength alarm. Any suggestions?

Friday, December 02, 2005

Warning: major venting post

Hi, everyone. Here's the scoop. One baby is still in the hospital, the other came home on Tuesday.

I am very glad to have M home, but I still feel sad that J is not. I go to the hospital almost every day to feed and hold J whilc SP stays home with M. (What a lot of letters. Sounds like I'm posing a riddle or a word problem to you. Sorry.) J is such a little cuty. He has these huge cheeks that you just want to kiss and kiss. He is still having bradycardia, where the heart slows down below the rate it's supposed to beat. All of his episodes are self-limiting, meaning he brings himself out of them without help. It's a matter of prematurity, although some fullterm babies get it too. They happen while he's sleeping. If they happened while he was feeding, we could take him home because we'd be able to see when he was in trouble and help him. But when we're all sleeping it's a different story. Still, I am so frustrated that he can't come home when they're all self-limiting. On the other hand, I'd never forgive myself if we got him home and he had one that was not self-limiting and... well, you know where I'm going with this.

I'm so so tired. I'm tired of pumping after I feed one of them for fear I won't be left with enough milk for two once J actually does join us. I'm tired of trekking up to the hospital. I'm tired of people wondering where my other baby is. I'm tired of being on edge all the time. I'm tired of running around and eating crap on the go. I'm tired of the apartment being a mess. I'm tired of relatives, friends, and even strangers, and sometimes I am tired of my husband. I'm REALLY tired of myself. I'm basically tired of being tired.

Someone recently asked me if I had post-partum depression. I quite inappropriately answered that if they meant, did I want to throw my kid up against a wall, no. If they meant was I depressed that my kid is in the hospital, then yes. Who wouldn't be? How many of you would be whistling and skipping down the street upon leaving your newborn, precious precious baby every night?

But I have to pull it together. I have my breakdowns, and then I have to remind myself there are people much worse off in the NICU, remind myself I could still be trying to get pregnant, remind myself that every moment with my children is a giant gift. And stop crying. And then I'm okay for a few days. Then I can be strong and jokey and supportive of my husband when he needs it, and I can even cook dinner after getting home at 8PM. Oh, and maybe I should mention that SP often is the one to pick up the pieces of me, not me alone. Credit where credit is due.

Hopefully J will be home soon. Soon has now become, for me, by Christmas. I would like him here by then. But deep inside I know that I already got my Christmas presents this year. It's just that they came early, and now I have to wait for what seems like such a long, long time to unwrap them.