This post is a compilation of a previous blog, the blog I kept during Be-Bop’s first year. Here is Be-Bop during his first week, in August 2006, in NICU Bay 20:
Here he was by February 2007, just five and a half months later:
I wrote the following message to my friends on my baby message board in the early morning hours after Be-Bop was born while J slept.
August 25, 2006: “Our birth story was not at all what I’d expected would happen, even aside from the premature aspect. I was used to having contractions and somewhere mid-morning yesterday I noticed they were a tad on the dull-painful side. I went about my business doing laundry and cleaning around the house, but I did go ahead and gather our toiletries and other things together just in case. I did it though, thinking I was being paranoid as usual. J came home for lunch around noon and I’d been timing these new kind of contractions between 4 and 8 minutes apart and we debated whether or not to call our doctor or whether to go to the big hospital or whether to just sit and wait. After he went back to work I had a much stronger contraction that made me decide to call our doctor, who said to come on in. I just knew I was being paranoid, especially since I’d done practically the same thing this past Monday. But before I left for the office I was bleeding. I got to his office and he said I was three cm and there were definitely changes in effacement since my Monday exam. He said it was going to be an ambulance ride for me from the local hospital to the big hospital in the city. He was even along for the ride. J took Tinkerbell to the vet’s for boarding and still managed to beat us to the big hospital; the one available ambulance had had to take another patient on a three-hour round-trip ride from one big hospital to the other! Talk about small-town ways! So baby and I had to wait for about forty-five minutes before we could even hit the road.
“We got here about 5:00 p.m. and were at four cm, and things progressed fairly quickly from there. I managed to hit nine cm pretty quickly with little effort, but it took some strong contractions to get completely dilated. My body completely took over with the pushes then; I totally couldn’t control the pushing urge and only had about four pushes that I had to exert myself for, there at the end. As I said last night, he arrived at 9:26 p.m. And I mentioned the pain control (or lack of) in my previous post. Honestly, even if I had been able to have an epidural or wanted something more for the pain, I’m not sure there would have been time for anything to take effect. Be-Bop was crying before he was even out all the way, and though they were examining him carefully, there was no emergency-style rush off to the NICU immediately. I wasn’t interested in holding him because I was so shaky from birth and the pain from a few stitches (the stitches going in hurt almost as much as the pushing), but J got to hold Be-Bop for about fifteen minutes before they headed off to get settled in the NICU.
“He’s had a pretty stable day; they did intubate him last night because he was just not getting quite enough oxygen on his own because of some shallow, fast breathing. They are already weaning him off the ventilator, though; he’s responding very well to it. They plan to do a seven-day round of antibiotics in case the prematurity was due to an infection, but all signs thus far with his tests say there’s no infection to worry about. His bloodwork has been “beautiful” according to his nurses. I’m pumping (a few measley drops thus far), and they will give him whatever I pump until we can start breastfeeding for real. Otherwise, he’s getting a sucrose solution via IV. So it’s just a waiting game for now. The NICU nurses are fabulous and we have twenty-four-hour visitation rights. I have been up and about all day today and of course I’m sore when I stand for too long, but otherwise I’m feeling great except for exhaustion. I will be discharged about noon tomorrow but I will stick close to the hospital until he can come home.”
Friday, September 1, 2006: “I went back to the Ronald McDonald house this afternoon for a nap and when I got back, Mr. Be-Bop was in a regular pediatric room! He’s in a crib and his temps are maintaining very well. In fact, this evening he’s been a tad too warm. We’re making the transition to breastfeeding fairly well; he’s a pretty hungry boy. They checked him once an hour for four hours and now we’re down to every four-hour checks; it will get progressively better from there. All of his cares are our responsibility now and we just have to weigh his diapers and leave them for the nurse and report his breastfeeding time. We thought he was having Brady spells for a little while, but it turns out that whatever was going on with the monitors, the docs are pretty sure they weren’t Bradys.
“So we’re spending the night in his room and likely will be here twenty-four hours a day from here on out, since our Ronald McDonald rent runs out on Sunday and I’ll need to serve as milk bar every 3 hours. I think we’ll go home on Monday or Tuesday, at the rate we’re going, and no one has said anything contradictory. 🙂 🙂 🙂
“He was fine, he just needed about a week and a half more baking time than he got.”
September 14, 2006: “Okay, back down to peds again. J fixed it so everyone knows exactly how we feel about our last experience down there, and the staff physician made it very clear to her residents that a repeat will not happen.
“I’m tired and know that I’m going to get a lot more tired before this next week is out, but I’m feeling good about things in general. Being tired is part of what being a new mom is all about, after all! I’ll head back up to the hospital this morning to stay with Porter until he is able to come home, which we’re hoping will be around Thursday or Friday of next week. Today is another Day 1 of the brady spell count. He has to get to Day 7 without a bradycardia spell before they will discharge him from the hospital.
“Our little man lost his nasal cannula again yesterday and he’s responding very well. If we get to breastfeeding consistently, he’ll lose the feeding tube altogether for good. Being on the pediatric floor means I get to act like a real mommy around the clock, which is good because I was starting to feel pretty detached again up in NICU.
“Anyway, that’s where we are this morning. We graduated from the NICU this time a little less naively optimistic but a lot more realistic and all the more wiser as parents. Discharge at the end of next week would be nice, but I’ll settle for coming home around his due date, too.”
September 18, 2006: “So, on Friday when we got to Be-Bop’s room, his 4th-year resident came by to get consent to do the circumcision. At that point, we were still on a day 4 of the brady spells and thought we’d be coming home today after they did the circumcision. I signed consent, we talked a little about it and I made it clear that we wanted to be present so we could hold his hand through the procedure, and then she went on her merry way. We threw all notions about what would happen with Be-Bop out the window on Friday night after his brady spell.
“Today when we got to the hospital we were a tad late for his noon feeding (I had a dr’s appt this morning and so we couldn’t get there earlier). So I rushed into the room and tried waking him up, and it was a little harder than usual to wake him. But I went to change his diaper and as I undid the aplix, he screamed at me, in obvious pain. His nurse came in about that time (before I threw back the diaper to see whether it was dirty), and he said, “So they did the circumcision this morning,” and my eyes got all wide…oh, we don’t want to go too deeply into it because I’m mostly over it, but I was absolutely livid. But the nurse went on about explaining care as Be-Bop heals and I tried to listen, all the while fighting back the tears. He said today was a wash and that Be-Bop might not be hungry and would likely just nurse for comfort. So I went on to feed him.
“When I got settled with Be-Bop, it was just obvious he was not hungry and wanted to sleep. The nurse came back in and casually said, “Well, he just ate at 10:30 last.” No wonder he was sleepy– he ate at 10:30, they did the circumcision at 11, and here I come in bouncing at noon ready to feed him. I never would have pulled on his diaper or tried to nurse him if I’d known about the change in his feeding schedule or the circumcision. So I went through the entire story about how we’d gotten burned on poor communication last time we were on the floor and how I was not a happy camper and though I didn’t tell the nurse this, I did tell J that the fourth-year resident needed to get her a** into the room ASAP because I needed to go off on someone.
“The misunderstanding about the circumcision was that they were waiting to do it only because of his weight; it didn’t matter that he was still having the brady spells or that he was not being discharged today. The nurse thought that the fourth year resident had called us and the forth year resident forgot that we wanted to be present for it. I was livid for a short while and considered going to someone in the hospital administration about the whole situation since things just don’t seem to get passed down the line to us even when we make instructions explicitly clear. But then I calmed down.
“It’s really in our favor that they did the circumcision this morning instead of the morning we go home. If I’d had to deal with the stress of having him off the monitors on a day he wouldn’t have wanted to eat much anyway, I would have gone insane. And now when we go home, the circumcision will be completely healed. We’ll just get to enjoy our little man.
“But the other part of me will always mourn not having been there for my child. The nurse assured me that he was present and Be-Bop actually managed to sleep through the procedure itself and didn’t even cry. The first cries the nurse heard were the ones from when I came in. Which of course doesn’t make me feel good at all– I’ve heard hurting cries from when he had diaper rash, but this one was just terrible.
“Be-Bop is really fine, though. He doesn’t like to have his diaper changed, but only that first one was the worst. He’s fine and just looks around like normal whenever we’re not messing with it. The whole experience was WAY more traumatic for me than it was for Porter.
“By 4:30 or so, I’d had just about enough. I wanted so badly to hold Be-Bop close to me and he seemed to like it just fine (well, he slept through it, so I assume he was okay with it), but the d**ned alarms kept bleeping. I would have dealt okay with the alarms, but nothing but movement seemed to be making them sound. His heart rate, O2 levels, and respiratory rates were all normal. I was so frustrated by that point that I just told Jared, “I’ve got to go home and not come back until they tell us it’s okay to bring Be-Bop home.” I really meant it, too. It was a horrible feeling, knowing that he really needed the monitors more than he needed to be held tether-free by his mother. I hate the pump, I hate the hospital, but most of all I hate those d**ned monitors he’s never had more than five minutes off from since thirty minutes after he was born. I was at my wits end and becoming more and more detached by the second.
“I have such a caring and sensitive husband. I know very few of you know him, but J has infinite patience and empathy, and he is such a gentle spirit. He has wanted for quite some time to have me hold Be-Bop without the monitors on him, and when he broached the topic with the doctors about a week ago his request was vetoed.
“Be-Bop was due for a bath today and I didn’t have the energy or the interest in giving it to him. So J got him undressed and the nurse said the leads to the monitors come off too, and the nurse happened to need to leave the room for a while. J took that opportunity to pass Be-Bop off to me.
“It was just what I needed to be able to keep going back in that room for a little while longer. I really was preparing myself to come home and get back in the old cleaning routine and just wait things out, letting J visit and give Be-Bop my pumped milk. I feel so useless as his mother, especially now that he will take bottles. I just need to be the milking cow. But I got to hold him and walk him as far away from those monitors as I could and still be in that room with him, and it felt absolutely wonderful. It reminded me that we do indeed have a very normal baby on our hands and whatever detachment built up from the frustrations of the day melted completely away. I was enchanted; J was quite emotional. Mr. Be-Bop just slept away.
“I snagged a couple of pictures before they got started with his bath, completely sans those damned leads and wires. Everything had to go back on, but I’ll always treasure these precious first pictures without hints of medical intervention.
“The next few days are a special time for J and me anyway. It was three years ago today that I picked him up at the airport for that very first visit– we met in person three years ago today. The next day we traipsed all around metro Atlanta– to Lenox, to Fernbank, to Stone Mountain, and downtown to Les Mis and the Spaghetti Factory. That Sunday the 20th we went to Panola Mountain before I had to take him back to the airport, and the shy J I already knew so well surprised me quite a bit by being forward enough to tell me for the first time that he loved me. So much has happened since then, both good and bad, and we’ve carried more than our fair share of grief through our relationship. I’ve had moments when I thought the magic from those days was completely over. But then something random will happen, and we’ll look at each other and I remember why I’m here, why my life is the way it is right now. It’s because this man I love so very, very much agreed to come see me on the spur of the moment. He’ll tell you, though, it’s all because I “smiled” back at him, online.”
“I love you, sweetheart. >:D<”
November 1, 2006: “Be-Bop and I are trying to get into a routine now that we’re back at home. It’s so cold here. I can look outside and just tell by the way the sun shines on the house next door that it’s COLD. I hate it.
“I’m medicated now…didn’t want to fess up to it last time I posted. They’ve put me on a ridiculously low dose of Risperdal, the medicine they used to give me when I was manic. Risperdal is an atypical anti-psychotic. In more normal doses, it’s used to regulate schizophrenia. In my case, it’s intended to make the highs not quite so high and the lows not quite so low. Okay, so that’s still bipolar– I know. Risperdal usually has to be taken in conjunction with Cogentin because it causes muscle drawing. I was at a restaurant once in high school and all of a sudden I couldn’t control my neck– it was terrible, especially since I had to drive home. Luckily, the dose I’m on isn’t nearly high enough for me to even need the Cogentin.
“The psychiatrist in Cow-Town says he anticipates me only needing it for a few weeks. I’m medicating my anger away, but I’m anxious that maybe I should be medicated all the time. That scares the everliving s**t out of me. I want to be the kind of woman I want to be (and I’m feeling like I am that woman now), but not because of some little pill. And the dose is so low, how do I know for sure that it’s not some kind of placebo effect?
“We put out a blanket “come if you can” online to our friends while Be-Bop was in the hospital, but we pretty well left our families alone. I guess we both figured that family didn’t have to be asked to come; they’d come if they could. No one did, and people rarely called.
“I’m trying hard to understand that maybe families in the Midwest simply do not operate the way my family generally does. And it’s been my impression that most traditional-style Southern families are just there for each other, especially in crisis. My aunt e-mailed just about every day, but my grandparents never called. I know it’s Iowa. I know my grandparents are old and child-like in their egocentricity. I know I made the choice to live 900 miles away from them. But in years past I would have taken it for granted that they would have crossed the earth if I needed them. And having a brand new baby in the hospital sure would seem like it would qualify as needing them, to me anyway. Now it’s my duty to grin and just share Be-Bop with these people as if nothing happened. My grandmother said, “He’s a smart little one, isn’t he?” Well, the d**n truth is we just don’t know that yet, and if she had been there she might understand exactly why I’m not holding my breath until we hear that cerebral palsy can be ruled out.
“Yeah, I’m d**n mad. I had bad feelings about my pregnancy with Be-Bop from the beginning.
“Be-Bop’s not sleeping anymore, but this is good…I’m on a roll. You can wait for a few minutes, little man.
“I’m so glad for everyone’s support online. You guys have been my rock. I suppose people just thought that since we were going back and forth between home and the hospital, it just wasn’t worth calling if they might not get us. We sat in Be-Bop’s hospital room day after day alone, watching those brady spells on the monitors and while they assured us that he wasn’t in danger, it’s not easy to believe that when a bright red and dinging alarm is going off saying that your child’s heartrate is half of what it should be and he’s not getting enough oxygen.
“People know just what to do if you have a normal baby. They arrange for meals, they come offering to do household chores, they come to watch the baby for a little while so you can sleep. We didn’t get any of that when Be-Bop came home.
“When it comes to crisis and tragedy, it seems most people are clueless. It doesn’t take hospice training (which I have) to tell you that it’s easy to reach out to people in distress. Just, whatever you do, don’t tell them to call you if they need anything. People in distress are not going to pick up the phone when they need something. If you would like to do something, make a very, very specific offer and follow through with it. If they turn you down, ask them right there on the spot what you can do to make their lives a little more simple this afternoon, right now. And for God’s sake, don’t feel like you have to say anything. Silence is just about the best gift you can offer someone in crisis, so that they have room to talk or cry or vent in some way about what they’re going through. Chances are that any words you might try to express meant to comfort are just going to sound hollow and meaningless to them. At least, I know they did to me.
“I can’t tell you how many people would say, ‘Oh, I know this baby or that baby who was early and they’re five years old and so healthy and happy now.’ I was more interested in the stories of families who were dealing with the not-so-happy endings, because those stories are equally as real, life goes on for those families as well.
“Okay, so the Risperdal isn’t covering up my anger quite like I thought maybe it was. Ironically, that gives me hope. If it’s only masking the extent of the rage, then there’s hope that I can work through it and maybe that one prescription really is all I needed, like the psychiatrist intended.
“Got to attend to a screaming baby now. Did I mention that J and I are not fighting over who gets up with Be-Bop in the night after all, like I thought we might? J can take as much night duty as he wants. 🙂
“Oh yeah, we got Be-Bop’s hospital bill. $127,500. Of that, we owe a grand total of $269 out of pocket. Thank God for J’s kick-a** insurance. I was thinking that was high, but then I found a thread titled “Million Dollar baby” on the preemie parenting board…oh yeah, we’re on the low end as far as preemies go.”
January 16, 2007: “Our little man is a normal little boy.
“I’m a normal mommy.
“Oh, that hated phrase. I hated normal mommies, with their perfect babies who got to stay in their mommy’s rooms and go home at two days old. I hated those looks of pity.
“I know that it may seem like a given to lots of people to say that Be-Bop is normal, especially those of you who hear about Be-Bop’s latest achievements on a regular basis. I guess you could maybe think he’s pretty normal by looking at his more recent pictures on here.
“But he’s not just normal for a preemie. He’s not just normal for a ventilator baby, a NICU graduate. He’s not just normal when you adjust for his age. He’s normal even in comparison with normal babies who got a normal start, his pediatrician said on Thursday. The doctor just sat there and marvelled at him. Our fantastic general practitioner closed down his practice in our small town to ride the hour long ride in the ambulance that day that Be-Bop was born and he visited Be-Bop in the hospital. He saw how small Be-Bop was when he was two days old.
“I don’t know how many of you can grasp how huge this is for us. I don’t mind bearing the scars of Porter’s early days, the brady spells and monitor alarms and the d**ned pump. We’ll deal with the question of whether trying for more babies is wise at a later date. But I’ve been so afraid since that thirty-two-week mark when we first had the hint that he might come early that his beginning was going to have some terrible, lasting impact on Be-Bop’s development, that I’d always have to be on guard for delays or something else bad.
“It takes most preemies/low birth weight babies upwards of two years to catch up and really compete with other babies their age. Be-Bop has done it in 4 1/2 months.
“Maybe I can exhale every once in a while now.
“It’s snowing here, finally. Oh, how I loathe the snow. However, this time is a little different. I’m staying close to the window, mesmerized by the newness of this snow. I’m not numb from the months-long inundation just yet. Right now, it looks pretty to look out the window and see the snow on the rooftops, yards, and tree branches. I do love the silence that comes with that complete snow cover. It’s like insulation on our whole little immediate world. And at night, it reflects so well that our normally pitch-black street seems lit up by the moonlight.”
February 26, 2007: “I suppose people in the civilized world wouldn’t know it, but we just survived the worst ice storm in about a decade in Iowa.
“Be-Bop’s baptism was scheduled for yesterday.
“Above is a picture of the church yesterday; it looks all nice and pretty and warm. But underneath that snow outside, there’s about an inch-or-so-thick sheet of ice.
“We were supposed to have J’s sister and her family plus my family and J’s dad all in town. J’s sister decided to not chance coming at all. Especially after I got my feelings hurt after Porter was born, nothing is going to stop my family from getting here if it’s in their control at all. But they flew in and so they had a long drive to get here. Saturday’s ice has meant power lines down all over the state, so they didn’t get in until just after the service started. Pastor A delayed the baptism until after the sermon just to give them time to get here.
“Yesterday was a pretty good day, despite not getting to visit with my family for long. We had beautiful family pictures and six-month pictures taken.
“As usual, Be-Bop was his adorable happy self. He sat quietly through Sunday School and church and when it came his time for the spotlight, he promptly fell asleep. Woke up briefly when Pastor A sprinkled him.
“I was in a serious funk most of the weekend, though. D***it, why the h**l did I agree to move to this desolate wasteland where this kind of weather is even a possibility? We think we’ve lost four trees because of the whole thing, but we won’t know for sure until the ice melts. We were lucky because we were only without power for about twelve hours on Saturday. There are plenty of people who are projected to not get power again for close to a week.
“I wanted to beg Mother and Daddy to take me and Be-Bop back with them. I cried hard after they left. On the upside, no work today.
“We’re expecting an identical dose of the same storm by Wednesday.”
May 7, 2007: “As usual, my child has handled our transition to Georgia like a champ. He got crabby on Sunday the 29th when we were about an hour away from our overnight stop in southeast MO, but who could blame him after seven hours on the road, just him and me? We stopped once on both Sunday and Monday to break up the drive with a bottle/ dipe break. Grandpa K has given him his very own keyboard to play with and he loves it! Mother and Daddy’s house backs up to a wooded area, and he is simply amazed by the wall of green outside the picture window in the kitchen/keeping room. I still have to get his room in order, but we are getting settled in. We’ve found what seems to be a great group of women with other 2006 babies, and we’ll go to our first playdate on Wednesday.
“And as usual, his mother is not handling the transition quite so gracefully. Do not get me wrong– I am beyond elated to be back home!! It is the right thing to do, the right thing for our family, the right place to be. I’ve so enjoyed meeting up with just the few old friends I ran across last week. The weekend we left, though, was extremely hard. Saturday I finally had to face the cats (we were planning to find new homes for them since they cannot live with us here at Mother and Daddy’s house), and I just bawled as I sat on the mudroom floor with them. I can’t bear to say goodbye to my “miscarriage babies”, and Murphy has grown on me simply by virtue of being so special to J. So now we are trying to arrange for temporary homes until we can buy a house down here. It was also hard to walk through our home, not knowing when (or theoretically if) I would see it again. That house has been my escape, my refuge, and my distraction for the past two years of living. I have painted 85% of the inside surface of that house, and I’ve painstakingly planned out any other changes that have taken place. Though we’d long since decided Iowa just wasn’t ever going to be home, our house was my safe haven. I sorely miss the “Be-Bop and Mommy Chair” in the nursery.
“It also tore my heart out to know I was going to church in Iowa for the last time ever on Sunday. Pastor A’s sermon about “Little Things” making a big difference pretty well summed up our experience over the past year with that wonderful congregation. The nursery folks have been so kind to us and to Be-Bop. That congregation fostered my faith in humanity and in God just when I was starting to think my faith was gone.
“But I have a job here now, Be-Bop is loving being so close to Grandma and Grandpa, J has gone from thinking he was half way done with his program to only needing 9 more credits, and the weather here is absolutely beautiful. The “Be-Bop and Mommy Chair” will follow us to Georgia and there will be a new nursery to paint and decorate. Best of all, the reason I moved to Iowa will indeed be accomplished– J will have his Masters degree in Library and Info. Science from an ALA-accredited program by the end of Fall 2007 semester. He will be here to live with us, though, in August. We can’t wait!”
May 30, 2007: “Let’s see how long I can put Little Man off. He’s awake from his nap, but he’s playing in his crib. It’s close to dinner time for both of us.
“Things are going well here. I need to post one of the dozen or so videos Daddy has taken of Be-Bop. He’s trying hard to say “Grandma” and “Grandpa,” but so far he just gets “Guh” out. He can do “DaDa” for J, though. No crawling yet, but he can sit on his own for long stretches. And such a happy baby, with those beautiful blue eyes! I don’t know what I did to deserve this, but it’s so fun to be Be-Bop’s mama.
“Home has been just the medicine I’ve needed and my balance is getting slowly restored. I still have random upsets; for example, yesterday we were out in Cow-Town and I got lost somewhere on what I thought were familiar country roads. I burst into tears because we were running late and I was shocked to find I couldn’t remember those roads I knew like the back of my hand 10+ years ago. So little things still set me off with no warning. But work is going well, and it’s been lots of fun reconnecting with folks.
“J got carpet installed and he’s working on painting our laundry room/ guest room this week. We’re hoping to have the house on the market very soon. Anybody know someone moving to the middle of nowhere Iowa? 🙂
“J came down for Memorial Day weekend. He was really worried that Be-Bop wouldn’t know him (secretly, I was too). But all J had to do was say, “Be-Bop,” right there in the airport, and that baby looked right up and grinned at his daddy like he was saying, ‘Daddy, where have you been?’
“I could go on for several hours about the disgustingly-sappy happiness that’s going on in our lives. There’s still plenty of work to be done and plenty of uncertainty (anyone able to offer J a job?), but we’re holding fast to our Presbyterian “whatever’s meant to be will be” philosophy. It hasn’t let us down yet.”
July 23, 2007: “It’s been a crazy day, being my first full day at work and Be-Bop’s first day in daycare.
“Little Man looked shell-shocked when I picked him up today from daycare. Everyone kept asking me today, “Are you okay?” since I dropped him off this morning. I was happy and it was exciting to see him off to his first day of “school.” I have complete faith in our center. But Be-Bop is not used to being around other people for his naps so he only slept 30 minutes all day long, which is not much for him. It didn’t register for him that I was Mommy when I took him; I had to bounce him around and he really understood what was going on when we got out of the car and in the house. It was all new today!
“It was all new for Mom today too. Iowa seems like a bad dream now. There’s plenty to learn and my new job will be just challenging enough to edge me out of my comfort zone every once in a while, but not enough to keep me from being able to leave work at work when I come home for the day. Feeling very blessed!
“Best of all, J gets here to stay in a week and two days! It will be so nice to be together as a family again. Most days I can deal with it okay, but like tonight, I just wanted to bury my head in J’s chest and cry and let him tell me it would be okay. My husband is my rock and he’s working so hard right now to finish up his work and schoolwork.
“Okay, bedtime. 5 is going to come early in the morning.”
Our family at Be-Bop’s first birthday party: