Thursday, July 30, 2009

More balancing acts

Just trying to stay caught up on sleep...

Not that I have much to complain about. Tiny Guy stays asleep at night for at least one longer stretch, as much as five hours but that only happened once, and he tends to have one period of wakefulness at 2 or 3 AM. Last night was actually a bit earlier. Also, last night I was able to nurse lying down. Made it easier but then I fell asleep.

His bed is properly attached; he still isn't into it yet.

Since I don't have a lot going on in terms of being bound by time, I am still doing okay in the sleep department.

About The Boy: chemo is proceeding fairly normally. We should be out tomorrow afternoon. His appetite is returning although last night, dinner came back up. After the initial drama and getting him cleaned, he was unfazed and went on to play rough with Daddy.

Exciting new information: Vasotec, one of the BP meds, is good for the kidney. We knew that when he started to take it. However, it inhibits bone marrow from doing its job. Even with the Epogen shots, the red cells just aren't being made very well. So there is no point in continuing. Neupogen seems to work well enough for the white cell recovery, thank goodness. And they don't want to take him off Vasotec or Cozaar because those are good for the kidney, except when his potassium is too high, because that can happen with both meds.

Fun stuff.

Tuesday, July 28, 2009

Time is a wastin'

6:30 PM and they have only just started hydration for chemo. This means that chemo will start at 8 or so, and it's long. Also, it means that Etoposide will be in the middle of the night, like 3 AM.

Why is time a wastin'? Why so long? Well they thought it would be a good idea to reduce BP meds even though he was only just put on them a few days ago. BP was in the normal range for someone his age instead of where it had been. Reducing the med caused the BP to go back up a bit and chemo to be delayed.

So we wait.

Monday, July 27, 2009

The Baby Code

Penelope Leach defines the "settled baby" phase as beginning after the first month. Her book, Your Baby And Child, has been around for awhile. I recall seeing it sitting around the house when I was young. I actually read the book during The Boy's baby phase. Anyhow, the implication is that a baby is unsettled during the first month. I'll agree.

So much of that first month is just trying to figure out what the baby wants and how he wants it. Cracking the code, if you will. The Boy: semi-predictable feeder. Loved the front-pack carrier. Loved the car. And rocking chair. Tiny Guy: slightly more settled in his eating but still always hungry. Loves the sling. Beginning to tolerate the car. Loves the sunshine. And walks outside. Loves being naked. The Boy didn't until he was older.

It takes time to figure things out. And then they change. Children get older, too, and the decoding process continues.

Same deal with toddlers. And eleven-year-olds. Except that toddlers talk a little bit. And eleven-year-olds talk a lot. Sometimes, it makes them easier to understand.

Saturday, July 25, 2009

When it rains, it pours

And fortunately, sometimes that is even true for good news.

This morning we had some friends come over. Even if all they did was visit, I would have been thrilled. They came to help, and boy, did they ever! "They" are a couple with a little girl who is 4 months old. He mowed the lawn and got us food at the farmer's market. She cleaned toys, organized in the kitchen, and vacuumed the floor while I did laundry, dishes, and cleaned some surfaces. Oh yeah, and rested a bit too. It is such a jumpstart to have people come and help because you feel like you can do the work so much more quickly. And how nice just to talk.

The two babies were quite fascinated by each other.

Musical Daddy was home to see them for awhile. My sister spent the day with The Boy and had good reports when she called.

Tiny Guy was angry about something, but I really didn't think that feeding was the thing, and even so... I was wiped. And sore. And he had been fed. I did pump the left side and made the bottle an option. Then I slept. For two hours. I did get four hours plus three hours last night; clearly I needed more. Tiny Guy eventually did take the bottle. It was about two ounces, after he had already spent a lot of time nursing on the other side. I don't worry too much about nipple confusion, because Tiny Guy has such a preference for the real thing. The Boy was the same way.

Yes, I said nipple. We all have them. Mine actually do something.

Anyhow, it was great to have good things happen.

The Minoxidil really works. BP is good and The Boy slept much better overall. He is off the two liquid BP meds that he got three times a day. He will stay on the Cozaar and Vasotec once his potassium goes back down, because those are good for the kidney. He will also get a water pill. Just like Grandma. And his other Grandpa too (my mom; his dad). He did eat some today. Who knows what the potassium clearing medicine (I will get a spelling on it and write the name soon) did to his insides. Well, we do know, and it caused lots of stuff to come out of his rear end. I think that if we have to, we could give it orally. Just slowly. It is a lot of volume, but not a horrible substance. Sweet and pleasant, not too slimy. It is a matter of him feeling a bit better.

So the medicine regimen is now Minoxidil, water pill, Vasotec, and Cozaar each once a day. BiCitra three times a day, as he is still acidotic. Not sure about quantities and how that will look. Much more humane, because he isn't getting so much liquid shoved at him.

I am waiting to see when Tiny Guy will wake up and want to eat, after which we will probably take a walk. Musical Daddy said it was a lovely day.

Divide and be conquered

Musical Daddy is having a heck of a time with The Boy and his medical issues. The medication being delivered rectally is exactly as much fun as it sounds. Pair that with a night nurse who just doesn't seem to have it together and you have a recipe for a miserable night.

Meanwhile, I am here with Tiny Guy who took forever to sleep. He rewarded me for my efforts by sleeping from 11:30 to 3:30. At that point, he woke to eat and for some reason was very gassy and had to be taken off to burp every 10 minutes. For over an hour. Finally it seemed like he was done being hungry, so I put him in his bed and turned on some tunes for him. I was able to doze a bit, but he never did fall asleep and was up at about 5:10. And is now eating again.

Problem is, a lot of the time, he can't be soothed any other way, other than nursing. Which is normal, I know, but the big wounds I have wish that he would respond to other things.

If he is asleep, I should be too.

Friday, July 24, 2009

Here we are

Hoping to resolve BP issues over the weekend and do chemo Monday.

Things are bad in kidney-land for The Boy. Potassium is high, BP is high, protein in the urine is back. So they wanted to give him a med to flush out potassium. 48 cc of it. It was pleasant enough to the smell, and he took 28 before being taken for Xray and Echo.

Xray showed fluid; make with the Lasix.

The rest of the medicine came back up along with lunch. The options: going up the other way, or dialysis. Because of infection risk, they usually don't like to insert anything rectally with cancer patients, but his counts are fine and this has to happen.

I feel better about his behavior knowing that once we can control his BP, he will feel better and act like himself.

More later.

Wednesday, July 22, 2009

I got your irony right here

Knowing that my sons already have quite the sense of irony, intentional or not, I'm just blown away by this next twist in The Boy's medical journey.

It's not necessarily such a bad thing, but it is worth a chuckle.

The Boy is on four blood pressure medications, and still his blood pressure is way too high. We thought that perhaps he'd get better after being discharged, but he hasn't, so far.

The nephrologist said that they'd try a different medication and gradually take him off of some of the others, and that even though they haven't used it on someone as young as The Boy, it has always worked in other patients and she is confident that it will work for him.

The name of the new medicine is Minoxidil.

For those keeping score at home, that is the drug name for the brand Rogaine. You know, the stuff that grows hair. I don't really see it having that effect on The Boy, and I would wager that the medicine was developed for the purpose of lowering blood pressure. When they saw that it was growing hair on people, they probably were able to sell a whole lot more of it.

And let's see who wins--chemo or Minoxidil. Something tells me that even Minoxidil won't grow hair on a cancer patient.

Tuesday, July 21, 2009

I've had a wonderful time but this wasn't it.

Great day overall, though rather overwhelming. First day with both boys in the house. Quality time with both, and each one.

But now it is 4 am and I have been up since 2:30. And Tiny Guy has only been up since after 3. The Boy was throwing a fit at 10:30 and woke up 4 hours later to pick up where he left off. He left the room and was asking for things, and was screeching, and just being a little jerk. Daddy was having a time trying to calm him, and I was trying to stay asleep because my turn with Tiny Guy was coming soon. Finally I got out of bed to calm The Boy. So it's been...when The Boy is not receiving direct attention from me, he gets up out of bed and wanders. But Tiny Guy needs me too. I nursed one side twice and pumped the other, and right now Daddy is giving him a bottle. Partly for the healing but mostly so that I can stay with The Boy and keep him from wandering and throwing fits. Oh, and Tiny Guy is still not wild about the bottle.

The problem is that when we offer a bottle, we don't know how much he needs, and he generally doesn't replace full feedings with a bottle. But even the process of trying to get Tiny Guy to take a bottle is probably less stressful than toddler drama. At 4 am. Fortunately I pump more than either of them drinks right now. The Boy wanted milk, so I poured him 1.5 oz or so. He took 2 sips and changed his mind. Yes, he is drinking people milk. He is a person. But I am not thrilled about wasting milk.

So I don't yet know if Tiny Guy was satisfied with his bottle but it seems as though The Boy is asleep. No, nevermind. But he is calm. And all I hear from the living room is the TV. Once nursing becomes easy, as I know it does, I think I will have a better handle on both boys. Because Mommy is essential. In the meantime, if every night at home is like this, then we're all F-ed.

Monday, July 20, 2009


Finally, after all this, they should be sending The Boy home in the morning.

Of course it is "morning" right now and I am feeding the baby. I am sticking with one side and pumping the other, as somehow it has become one big gaping flesh wound. Of course, Tiny Guy won't take a bottle from me and will barely take it from anyone else, and since I am by myself with him, he just wants to eat and eat, to get the one side up to filling him. And he fights hard to keep that bottle away, even though it is still the same stuff. Hopefully I can get another rest day on the more sore side, and he'll take a bottle from Musical Daddy once they are home.

Other than the feeding issue, it was a nice day with Tiny Guy. I was all over the place with him, and he was a good sport. We spent the afternoon at the hospital and they even let The Boy come out to the lobby to play! After we got home, since Tiny Guy was asleep, I followed his example, but not before enjoying a sandwich.

He let me do some chores, ate a few times, and then I could tell it was time for a walk. This kid gets such cabin fever! It will keep me in shape, for sure, because I'll have to take him and The Boy on at least one walk a day.

Friday, July 17, 2009

Something wasn't right

The Boy had his port replaced today. The surgery itself was scheduled fine, unlike the removal. He took an awfully long time to wake up. His blood pressures were ridiculously high.

He was swollen. He was breathing poorly. His oxygen saturation was low. Even at 2-ish, which was when we arrived after Tiny Guy's appointment.

Diversion: Tiny Guy had his two week checkup (2 days early). He is six ounces heavier and an inch taller than what he was at birth.

The Boy was taken for a chest X-ray to figure out what was with the breathing. And to be sure that the port was where it was supposed to be. The problem was, basically, too much fluid retention. So, Lasix to the rescue.

Grandma reports that he drank some juice and that his last BP was at an acceptable level.

It was a VERY hard morning for Musical Daddy. Fortunately his father was there in the morning, and a volunteer from Chai Lifeline, a younger gentleman, was there in the afternoon. Even though the volunteer didn't get to "do" much, sometimes it is just nice to have someone there to talk with. Or to help with little things as he is stuck to the bed trying to make The Boy feel just the tiniest bit better.

This has been such an ordeal. Made more difficult by the fact that I have barely been involved in The Boy's care this time, and I think that this has been one of the worst stays ever. Nothing could be as bad as the Philadelphia stay, but due to the nature of this one and how tumultuous it has all been, not to mention the added fun of caring for Tiny Guy , this is on that level of awful.

It is made easier, however, by the nurses that take care of The Boy. They are so wonderful to him and to us, and the nurse manager even said that everyone is quite fond of us, his primary caregivers. It makes us feel as good as we can about the fact that The Boy has to be in there.

It is such a challenge, though...and we'll have a hell of a time once school starts again.

New port, and, to do:

The Boy got a new port today. Thank heavens. No more clotting up the peripheral IVs, a pretty good trick for a kid with no platelets.

He knew where the other one was. He would touch it and say "port" in the same way he would say "ear" or "nose." I have not seen him yet, so I don't know if it is on the same side or the opposite side. He'll have to learn a whole new location if it is on the opposite side.

Two week checkup (2 days early) for Tiny Guy. Then we will probably go see The Boy and Grandma and Daddy will switch.

I feel so out of touch with The Boy. What's more, we have been out a few times and people probably think that he is our only child. It's such a farce. Can't wait until our family can be together.

Thursday, July 16, 2009

The Sound of Silence

Tiny Guy is a VERY different baby from The Boy. We expected that. He likes the sunshine. Not that The Boy didn't, but getting out in the sun is pretty much an instant calming event for Tiny Guy. He does NOT like car rides, which is the opposite of The Boy who loves them even now. Also, he has very particular taste in music and an interesting sense of irony.

Item one: we're in the car and Tiny Guy is screaming and screaming. Daddy was listening to a podcast, and he put on some barbershop. As soon as the music got going, Tiny Guy was quiet. Next song: screaming again. We skip that song and go to another. No screaming. Go to the Vocal Majority Chorus. Screaming. Skip, to another, a championship quartet. No screaming. A top 20 quartet. Screaming. So not only does Tiny Guy only like quartets who have won the gold, somehow he has no patients for the Vocal Majority, who took second place in the contest for the first time in DECADES. Actually, it's the fact that the championship quartets have a certain ringing sound that can be easily felt, and perhaps that is what was calming him.

Item two: In the car again. Screaming. We have on Acoustix (a championship quartet) and he is screaming through the beginning of the Simon and Garfunkel medley, which begins with "The Sound of Silence." And at the perfect moment in the song, as they hold out the word "sound", he is quiet, and then they sing "of silence."

It's amusing.

Tiny Guy likes to eat and eat and eat. He'll cluster-feed for awhile and then be satisfied. Then repeat. Last night was a pretty reasonable night. I'm rather sore. His latch is good so that isn't causing the problems; he's just REALLY strong!!! Having nursed The Boy for 15 months, I thought that I'd still be pretty tough from that but apparently I have to start all over in that respect. However, I did not lose my overall comfort with nursing a baby. Especially in public. I don't give a darn who sees me, although I dress strategically so that no one can see my belly while Tiny Guy eats. It's a war zone over there. That said, I already look pretty good considering that it has been less than two weeks since I had him. I still probably have excess weight that I need to get rid of eventually, but fortunately, Tiny Guy will be nursing exclusively for the next 6 months and continuing to nurse beyond that. Nursing a baby means that someone else gets to suck in your gut for you.

So, about The Boy:

The past few days were very up and down for him. Fortunately, he is getting better. Hopefully, he will have his port reinstalled tomorrow. He is eating again and playing. Last night I got to see him and spend some time with both boys. The Boy is amused by Tiny Guy, but he has only ever seen him in the hospital and I'm not sure if he gets that the baby is going to be at home with us too.

I'll be interested to see how the sleeping arrangements go. Right now Tiny Guy is in our room. He has a bassinet, which he does sleep in, but sometimes if I fall asleep nursing him or if Daddy falls asleep burping him, he stays in our bed, across one of us. He likes to sleep on his stomach, or rather, he likes to sleep on MY stomach. I put him down in the bassinet on his stomach once, for a combination nap and airing of his bum, but I was awake and walking around and paying attention to him, so I wasn't worried.

I have stayed away from the blog for a few days because of heated internal situations, which have cause me much undue stress and likely have cause Tiny Guy to be that much more highly charged. For the record, I didn't start it, Musical Daddy didn't start it. But we have to deal with it. Couple that with the normal post-partum hormones and it's no shock that I've been a total basket case recently and I'm embarrassed. And isn't it sad that instead of trying to take care of myself that I'm embarrassed about being emotional, when I've been treated poorly and didn't do anything to cause it.

Anyhow, I am having a hard time staying awake so I'm going to nap.

Tuesday, July 14, 2009

My birthday

Yesterday I turned 29. Probably a pretty inconvenient time for a birthday, but I had a decent day. In the morning, Musical Daddy was here with me and Tiny Guy. We went out to breakfast at the breakfast place. Different than the diner. It has been somewhat hit or miss, with the last few times having been quite good. It makes us glad because they serve grits as an option instead of potatoes, which means that we don't have to worry about those for The Boy next time we get to go out; he can have grits but not potatoes. Potassium, you know...

We relaxed at home and then he switched with my mother and sister. They helped me in the house. And helped me to remember to eat my birthday cake from Aunt Marian. SOOOOO delicious!

Next, we all went to the hospital so that I could get a chance to see The Boy. He was well yesterday. Fortunately, one of the nurses from the treatment center came up and fixed The Boy's IV so that it was in his left hand and he could walk again.

By the way, The Boy said his first full sentence yesterday: "I don't want it." Didn't want ANOTHER person sticking him to find a vein for an IV. I don't know that he was too mad because I think that he recognizes this particular nurse and she never spends a bunch of time poking him--just a stick or two and done, because she does a LOT of vein-finding and sticking all day. The child life specialist at the center says that when she needs a blood draw, she just gets one of these nurses to do it.

Musical Daddy and I, along with Tiny Guy, went to the Cheesecake Factory. Not a great time for me to be cutting down on my dairy intake (The Boy was sensitive to it, so I'm cutting down for Tiny Guy too for the first few months nursing--just a little bit here and there). But it was very nice. Tiny Guy slept most of the time but did wake up wanting to eat. Shocker. So he ate. No major production, thanks in part to my cute nursing top that I was wearing--a pass-along from a friend in Texas whose daughter went through what The Boy is going through.

More time with The Boy after, and then we ladies and Tiny Guy went back to the house. We wanted to go to bed, but we straightened up in the house first. I figure that Musical Daddy will probably be pleased once he comes home and sees the house looking better.

I don't even really remember what I did for my birthday last year, as it was right after The Boy's diagnosis.

Thanks to my friends who donated to my Facebook birthday wish, raising money for CureSearch (The Children's Oncology Group).

Time to feed a Tiny Guy!!!

Sunday, July 12, 2009


Grandma and Aunt Wendy called this evening, and we had a video chat with The Boy. He is now doing better. His temperature is down and he was playing and having a good time. Still not eating much but at least he has been drinking some.

I have been sending little bottles of milk to him and sometimes he drinks it. Maybe it will help him feel better. And if he will drink it, I'll keep sending it. If Tiny Guy happens to feed on only one side, then I pump out the other. Figuring that plenty of kids who are The Boy's age are still nursing, and considering that we're humans, a bit of human milk for a human kid works well. Also remembering that adult human cancer patients will often look for human milk.

Just wanted to let that be known, that The Boy is doing better. It's hard, though, because things get difficult in a hurry.

Anyone free tomorrow? Go visit Musical Daddy and The Boy at the hospital.


The Boy is getting worse, not better. Musical Daddy's blog explains it better because he has been there and I have been with Tiny Guy.

Read This.

The bris was today. Tiny Guy was a hit and The Boy did get to attend the ceremony. It worked really well. The family was upstairs and other guests were watching a video feed provided by my cousin who is an Apple tech. And he brought a projector. Food was good, cake was yummy, and they even sang happy birthday to me. My birthday is tomorrow but since everyone was there they got me a cake and sang to me. I forgot my cake. All in all it went well, although some internal affairs issues complicated matters, and unfortunately, to us, today ended up being more about that than about celebrating Tiny Guy and our family.

My grandmother had said that no matter what, you don't ruin someone else's celebration. So much for that.

Saturday, July 11, 2009

Out of my hands, or his feet

I haven't seen The Boy since Thursday. My heart breaks for him and it's pretty darned difficult, but I have to focus on taking care of Tiny Guy and trust that everyone else can take good care of The Boy.

The peripheral IV in the left hand was a bust. I may have mentioned, or may not have, that they removed his port and put an IV in his left hand. It stopped working. They had to redo it, and they couldn't get it. So the choices were, immobilize his right hand, which seems to be his dominant hand and is his thumbsucking hand, or use a foot and immobilize him entirely, as he can't walk. Neither one is any good; we had to go with the foot. It makes me sick to think about it...he needs to walk so much and he can't. But for him to be unable to use his right hand would probably cause problems with his eating...and he wouldn't be able to color...I think it's only 4 days longer.

This means that the remainder of this hospital stay is going to be REALLY hard.

Although perhaps on Monday, someone from the treatment center can come up and find something good in his left hand again. Or, perhaps a phlebotomist can come up and do it. Musical Daddy was SO tired of the stupid residents poking him and poking him. It was the nightmare from last summer all over again.

Tiny Guy's bris is tomorrow. Despite the difficult circumstances, it will be a wonderful celebration, welcoming him into the Jewish community and into the family. We have cute favors with this photo of Tiny Guy. It is at 1:30 tomorrow afternoon, at the hospital, with the ceremony taking place upstairs and a small group of people there, and a projection downstairs for guests who are not upstairs. You are welcome to attend. This configuration is for The Boy's safety, so that he can be at the ceremony with his family. We will take turns staying with The Boy during the celebration and will bring him food. Realistically, there are only a few days out of a chemo cycle that we'd feel comfortable having a big celebration and having The Boy there...and luck just wasn't on our side.

Anyhow...I think I should rest soon. Tiny Guy has been resting with Grandma for quite awhile and will probably be awake to eat soon.

Friday, July 10, 2009

Baby Beginnings

First of all, my biggest complaint about newborns and even older babies in hospitals is that they are not treated like people. That bugs me. Furthermore, I consistently encounter such disrespect for the nursing relationship, of mom and baby. "Breast is best" but feel free to have this other substandard stuff. You'd think that in the only part of the hospital where people actually WANT to go, people would be more cheerful and more fun. Nope--newborns boil down to numbers. Which is why they like formula, because it's about ounces in and diapers out. With breastmilk, they want it to be numbers, so they have you watch the clock, which doesn't necessarily work that well and can cause problems with moms once they are out of the hospital.

The nurse that was taking care of Tiny Guy upon his readmission on Wednesday afternoon said to me, after the third time that I refused formula for him, that I should prepare to stay a long time, implying that my elitism about formula was dangerous and would impede medical treatment. She was mean and patronizing about the whole thing. The pediatrician wasn't much better although he was polite and respectful, and when the jaundice issue was resolved, he said that my way was his preferred way as well, and that he was glad that I was able to keep Tiny Guy on only breastmilk.

I had to pump a bunch, as I may have mentioned, and I was able to provide him with enough feedings so I didn't take him out from the lights as often. But I produced. And I knew I did and I knew I would. Don't test me.

But really, it's a horrible situation. We stick him in a box for hours at a time and even though we get to touch him, it's not the same. And they make phototherapy blankets, but this hospital doesn't have them. As in, the baby could actually be held while receiving phototherapy instead of being confined to a box. So what do they always try to do when Tiny Guy was raging about having to go back in the box after being out for a feeding and actually getting nice snuggles and milk from the tap? Try to stick a pacifier in his mouth because that's really what he needs. Trying to shut him up. He's mad! We can reach in there and comfort him a little bit, but he's mad. And basically, he would just scream for awhile and then give up. I was standing there in tears when they first put him back in.

A kid with jaundice...file that under "everyone has problems." You know, you have to go back the hospital. Big deal. Plenty of kids spend some time in the NICU, which is also pretty scary and of course the parents get said, but still, everyone has problems. Couple that with the fact that my older son is also in the hospital and won't be out for awhile, and will likely never be all that healthy...and these wonderful hormones...bad scene. I'm usually tough as heck but I really need to be careful right now as I don't know how I'll respond to things. Best be gentle with me.

Tiny Guy loves to eat. Loves to snuggle. I wouldn't be surprised if some of the drama in his early days is causing him to want me more, or if it's just his nature, or if it's just normal baby stuff. He is an ordinary baby. And a roly-poly one too! He is already back up to birthweight at 5 days old. Again...loves to eat.

He also wears his cloth dipes very well. And they do the job. They are bulky on him, but so are all cloth diapers on newborns. It allows his pants to stay up. He can wear the 0-3 month pants with the cloth dipes.

The whole thing is so contrived though...having my new son in the house and getting used to him while my big boy is away from the house in the hospital. It wouldn't be out of the question for him to have been out of the house for the first night, maybe, but it's just been so long and I barely get to see The Boy. I miss him so much. He will love Tiny Guy. He already does. Video Evidence.

Thursday, July 9, 2009

Whack a Mole

Ever play this? It's the game where you hit one little critter and another pops up and you hit that one and it's just a matter of getting it under control, which is really pretty difficult.

That's us.

Good news on Tiny Guy--bili levels down to 10.4 from 14.8 yesterday. Likely, he will come out from under the lamps and get to hang out all day, and upon rechecking levels we may get to go home tonight.

On the other side of the pediatric floor, The Boy is awaiting surgery to remove his port. He is hungry. He wants juice. No fun for Daddy.

Grandma, bless her heart, is fast asleep. Once again, I don't know what we would do if she weren't so wonderful.

Wednesday, July 8, 2009

A curse? Or a blessing?

Tiny Guy has to go back to the hospital. He needs more lights.

The doctor is working on getting him in on the floor with The Boy. This actually makes life easier in some ways because at least we are all in the same place.

Who did we piss off?

Tuesday, July 7, 2009

Hooray!!! No lights!

No more light! At least not for now. Tiny Guy's bilirubin number stayed the same and the dark bilirubin went down. The number usually rises so staying the same is good!

Didn't post for awhile; this actually happened hours ago but I was busy. He needed Mommy time.

They will recheck at 3 and see where it is. I told them that my preference would be, if they want to keep checking, to send us home and we would come back since we will be here anyway.

Oh look--a clue!

Tiny Guy has been brought to me whenever he seems to need it because the nurse he has tonight seems to really get it, that he has to nurse in order to get the stuff out of his system. He had two good poos this evening. He also had some nice feedings. I wish he could have been fed right before his blood draw, but we were both asleep. Hopefully passing the poo helped.

He is very cute.

After they took him back, I got a snack. It is VERY nice that they keep turkey sandwiches in the fridge. I must have had five of them since delivery.

He is favoring the right breast currently, but we will fix that at home.

Nothing really new with The Boy. I should be able to see him today. We need to figure out who is doing what in terms of caring for him. I really can't do much except visit a bit, which really makes me sad. I want us to be a family, with all my boys together. Soon.

Going to try and catch some sleep.

Monday, July 6, 2009

Boy Updates

First, Tiny Guy, who has been sunbathing, has not made improvements in his levels. The reason that they tested his bilirubin in the first place was because he and I do not have the same blood type. His level at 8 hours old was 5.9 and his level at 20 hours old was 7.7 which is apparently just on the bottom of high risk for whatever it is.

Of course I have been getting feedback all day about how this whole thing is ridiculous and that what he NEEDS is to be nursing all the time to get colostrum and pass meconium and all that. I would like nothing more.

They also did a CBC on him, which isn't back yet.

As for The Boy, his doc just came to see me and I asked her why he keeps getting sick? She said that they may need to take out the port and replace it. The infection might be sticking to the wall of the port no matter how much it is treated with antibiotics. We shall see.

I hear a lot of people telling me to take care of myself, which is pretty darned difficult. I feel okay but overall pretty helpless.

You've got to be kidding me

Another staph infection for The Boy. In addition to whatever it was that was going on with his stomach. So this means at least 10 days in the hospital. On an IV. Retaining fluids and cranking up his blood pressure. I am in no condition to do anything for him because, oh yea, I just had another baby.

As for Tiny Guy, I am already very frustrated with the whole phototherapy thing, where he is under the lights for most of the time and brought to me every 3 hours for a half an hour so he can nurse. It's ridiculous. Because babies need to be held and snuggled, and nursed when they want it, not fed on schedules and kept under lights. I wonder how anyone ever manages to establish breastfeeding in a hospital. I'm not tremendously worried because I am armed with enough knowledge, but thinking about how many mothers know very little about breastfeeding and baby care in general and if they are thrown for this loop, they probably won't think twice about just letting them give formula and not doing much to compensate.

Under the lights...

Tiny Guy has some jaundice, and apparently it was quick to appear (I don't see it) so they want him under lights for awhile. This in concerning because it can cause problems fir breastfeeding. I told the doctor that I wanted no supplementation, and he said to feed the baby often and they would monitor weight, hopefully he won't need it.

The doctor explained that jaundice can be exacerbated when the mother is blood type O and baby is any other type. That is the case, apparently, with both boys.

Good Morning Tiny Guy..

Not so tiny but's really sweet to have a little newborn nursling again. He is already so sweet and snuggly. Loves his mommy, loves his milk, loves his sleep.

His legs are so roly. The baby nurse can't believe it was a natural delivery because he is such a big man!

I am feeling better already but still pretty sore. Like, ow. And using the bathroom is a BIG production.

Sunday, July 5, 2009


I can't get out to send so both posts will show up at the same time.

Tiny Guy isn't so tiny!!!! 9 pounds 4 ounces 21.5 inches! 9/9 Apgars.

Already loves to nurse.

So after delivery, family came in shifts to see him. I should also mention that Musical Daddy's niece was here and got to see the whole thing. She will be going to school to be a physician's assistant, so it was good for her. Also, she and Musical Daddy have always been very close. She was helpful and fun, and it was nice to have her there.

I did tear but not as much as last time. She said about a 2nd degree tear.

Anyhow...they took Tiny Guy to the nursery for his checkup. They have been informed that he will be a breastfed boy.

Birth Day

Jesse Aaron was born at 6:52 pm, 9 lbs 4 oz, 21.5 inches.

Currently nursing. Awesome.

I am a big brother!

I am so excited for the birth of my little brother, Jesse Aaron May. He was born today at 6:52 pm and weighed 9 pounds 3 ounces. He was 21.5 inches long. My mommy is healthy and happy, and it seems that my brother is recovering well from the whole ordeal of being born. My family and I would like to thank all of you in advance for your well wishes. Details about his bris will follow.


Water broken, lots of contractions closer together. At 7 cm, -2 station. 100% effaced.

In other news, The Boy has a fever and threw up, so Grandma and Grandpa are bringing him in. Also allows Grandma to see the baby sooner. Stinker.

Getting up again

Going to wander a little while longer. I am actually getting nervous!

Checked at a 6 and "bulging" so they want to break my water. I'm putting it off a bit so I can walk.

Wandering Jew

It feels SO much better to walk around during labor. Can't do that when you are stuck in bed, that's for sure.

Musical Daddy is catching a nap. Now is a good time--just progressing as I am.


Works outside of the room. Hooray!


Not sure if wireless works in the new room. That would suck.

On the monitor again for a little while, and then I can get back up.

Hugs during contractions are the best.

Hook it up

I now have an IV and they drew some blood. The IV stings a bit; she said I would get used to it.

I wonder how long before the baby gets here...

Being admitted!!

I am at 4, 80% effaced, still -3 station. I progressed 2cm in under 2 hours. So we are in business!


Doctor isn't here. Nurses are uninterested. As I said, I am not wild about them. The ones last night were much nicer. Everything moved so much faster too. I am still in triage and not admitted yet.

Back in bed

On the monitors again, because they need to see what's going on again. This, I can deal with because they'll take me off and let me move if the doc isn't here soon.

If I do get admitted, which I really hope happens, I'll not stay in bed. Why would I, when gravity is my friend?

On the ball..

Walked around, sitting on my exercise ball, trying to get relaxed.

Feeling okay between contractions.

SO glad that the baby is not breech. The nurse scared me. She isn't that bright anyway.

Checked and

Still not much progress! I am at 2 still, even after having good contractions. I'll walk around and see what happens...I just don't want to be sitting around here, nor do I want to go through the admission process and the waiting.

Very frustrating indeed.

Please, no flipping

The nurse can't seem to keep the monitor on the baby in the right position. She is thinking breech...I'm thinking oh crap. Last night and a few weeks ago, baby was head down.

Still waiting and now worried.


This is not productive.

I am on the stretcher bed, reclined, hooked up to monitors. I can't get up and move around, which is what I would rather be doing. And this position makes my bum hurt. But alas, I must sit here and wait.

Monitor is screwy; someone needs to fix it. Silly baby kicking the monitor.


Took awhile to find heartbeat...but it's going. Currently answering a bunch of questions that I already answered last night.

Definitely contracting more than last night.

Here again...

Checked in, in the gown, waiting...

Let's do this!

likely going in again soon

Things are definitely happening. I'm remembering now what "regular" contractions actually felt like when I was in labor with The Boy. Definitely painful but not unbearable. Even though those were induced, I don't think that the induction was that strong, so I'm feeling similar things on my own this time around. It hurts but it's not horrible. Horrible only happened toward the end last time. But it took a little while for the contractions to develop from inoffensive to a little more painful, whereas last time it went more quickly.

I would not like my membranes ruptured ("water broken"). I'd rather prefer that it happen on its own. Or, if the baby is born "in the caul" with membranes intact it's a sign that he is going to be very wise.

But I really want to wait longer so that I go in and I've definitely progressed and I don't have to putz around in the hospital any longer than necessary.

Still going...

I got about 4 hours of sleep and now I'm up, and I am definitely still in labor. I'm timing contractions (thank you, I am not "in pain" although it doesn't tickle.

I will probably take a shower soon, to relax a bit and because it's good to be clean. Hopefully I'll either have the baby sometime soon today or be able to squeeze in another few hours of sleep.

Saturday, July 4, 2009

Not yet

Going home. Docs checked and I'm only at 2 maybe. So I need to walk around a lot, try to get some rest, and maybe tomorrow we'll try again. They want to monitor me a little longer and do an ultrasound.


In the hospital...for happy things!

I am in a gown hooked up to monitors, to see what's up. There is no modesty here; my gown is wide open and my bum is hanging out.

So we shall see.

The post didn't go through so now I have been asked questions. Waiting for docs to check me.

Going in!!!

Let's see if I'm really having a baby soon!

Made calls

Called brother-in-law and called Mom. Even if there is no baby coming right away, it is soon we think. Maybe.

better off

Musical Daddy is feeling better. The Boy had a good lunch. We all went to the store, although only I went in, to return the chicken. I got a merchandise credit for it, so next shopping trip we'll get more chicken. We have plenty at home but why should our money be wasted?

I am feeling some action, labor-wise, but I'm not sure if it's anything significant. Of course, if it is, I will post something to the effect of "going to the hospital" so that there's no doubt. The last thing I want is to go and be sent home. Because as soon as it's time to go, I call Mommy and she gets in the car to come here. I call Uncle P to watch The Boy. And I'd really rather not summon the troops more than once.

Stinks, before noon.

Let's see...woke up not feeling anything out of the ordinary. Also woke up tired and woke up early. I know that some people take longer than others to grow babies but with the number of people who have already asked about this one, it makes me feel like I'm malfunctioning.

Musical Daddy feels like crap today. I hope it's just from too much pizza. He's in bed and I've got The Boy.

Colossal stinky poo this morning, after Musical Daddy had retreated to bed. I started diaper laundry because of it. All over his bum and some on his leg too. Messy cleanup, too.

I gave The Boy watermelon for a snack, which he enjoyed. I just read on a message board that watermelon helps decrease swelling. I could certainly use it. I'm better in that regard but still can't wear all my shoes.

While he was snacking, I figured I would put in some chicken. It was positively rotten. It said to use before July 9, and I just bought it yesterday. I should take it back. That's quite a waste of money and the store must have screwed up something. I put it in a ziploc bag, package and all. Of course, I actually have to get out, and The Boy is not fit to leave the house, with his white counts being in the toilet.

It isn't even noon yet and it's already a stinky day.

It's the 4th and...

I don't think that I'm having a baby today.

I am, however, having some general discomfort that is likely related to all the pizza that I had for dinner this evening. I was feeling contractions--not sure if they were "real" or not but at least I actually felt them--as frequently as every 7 minutes for a little while, but I made it a point to go to sleep at 10:15 or so. That way, if they were the beginning of real labor, I'd have gotten some sleep.

I got up at 1:15 feeling like I had to get up and sit out in the chair, and of course The Boy would not stand for it. Then Musical Daddy wanted to bring him out to me. It really bothered me for some reason, probably because I'm not feeling all that well and didn't particularly want to be touched. He ended up keeping him inside and turning on some TV. It is nice to be so needed but I guess I wish he'd be more content with Daddy. I wouldn't change a thing about the way that we've dealt with him in general in terms of responding to his needs, because he is still a baby in many ways and a sick one at that, but it does make it difficult. Leaving him with anyone other than my mother makes me nervous because whomever else is caring for him is likely not going to know him as well. Typical parent concern, really, magnified by our situation and the fact that he really doesn't spend much time away from either us or my mother.

The Boy's evening was spent being somewhat agitated, even though in general he did have a decent day. This morning he managed to catch his lip in a toy. No reason that he should have had his mouth near the toy in the first place. It took him awhile to stop bleeding from that because his platelets are low. Good times. Not that he doesn't do stuff to himself when his platelets aren't low, but I tend to notice it more when they are---falling off the chair at the treatment center and biting his lip; deciding to flip himself off the hospital bed; running into more stuff in general. But, he is a toddler. And a boy. I can't exactly put him in a bubble.

We had a nice family nap late morning into the afternoon. We had lunch--it was "meat" for lunch and he ate an entire hamburger patty! We did some good playing and we had friends over. Just two close friends, as The Boy's counts are low and we weren't about to do any major socializing. We talked, we played outside, we played inside, we had pizza and other yummy things, we played Trivial Pursuit on their Xbox (The Boy fell asleep in my lap at that point, which isn't necessarily a great thing to happen at 7 PM), got some help switching some furniture, and after they left it was about time for The Boy to go to bed. We chatted with Grandma and Aunt W first, and then it was bedtime.

The Boy was playful throughout most of this visit although he was cranky at a few different points, especially after getting both of his shots. His lip, just inside in the center, is visibly cut. Even with low platelets, little guys heal quickly, but I'm sure that it's no fun for him.

It took him awhile to fall asleep during our usual bedtime songs despite the fact that he was clearly tired. He isn't warm or feverish, so we gave Tylenol to help alleviate whatever was bothering him. I'm wondering if it isn't that last molar coming in that is causing him to be cranky. The bottom two of the second set of molars came in during the ICU hospitalization for blood pressure, and one of the other ones came in a little bit ago, but I noticed that the last one wasn't quite there; maybe it is on its way now.

Grandpa is at the Barbershop Harmony Society contest out in Anaheim and just sent a message about shocking results in the chorus contest. I'm sure it was a bit less shocking for those who actually saw the performances, but WOW.

Anyhow, I've been awake and out here writing for about 20 minutes and don't really feel like anything is going on in the labor/baby department. I will probably be getting phone calls and messages all day. The baby is exactly where he was the last time you asked--still in. You know that I'll update the blog and Facebook when we go to the hospital and even while we're there, most likely. I will be fine with keeping him in for another week or two if that's what he prefers. Drugs are also NOT an essential part of childbirth, so don't ask me about them, either. Unless something goes horribly wrong, I will not be needing pain relief. Birth is not a major medical catastrophe, nor is it surgery (unless it is a surgical birth in which case it is surgery, obviously); it is something that is supposed to just happen, and giving birth with fewer interventions will allow me to heal more easily.

Now I have The Boy with me. He is awake. Once I feel a bit better I'll bring him back in. Or, if he falls asleep in the chair, I will probably do the same.

Thursday, July 2, 2009

More of the same...

Another colossal puke this evening, this time after dinner and immediately following his Cozaar in ice cream. It isn't too concerning except that it happened twice in one week. Actually, the other concern is that this is at least the third time that Cozaar has done this, where he would cooperate and take the medicine but throw up within a minute or less.

He is not feverish, nor is he too upset. I would like him to drink some water before bed.

Classical Baby, one of our favorites, showed some compilations that TiVo just picked up. The Boy recognizes the individual songs but they are all out order. May as well keep these on the TiVo for easy access, especially when he is being watched by someone else.

I would prefer that eating be a bit more permanent for him...

It makes for a long day...

We arrived at the center a little after 9 and left a little after 4. We were picked up by the driver for the center and Musical Daddy met us there in the middle of the day.

Even though they had a type/cross on file from Monday, it still took awhile to get the blood.

Milestone news: The Boy ran a few steps today. He hasn't run before, just hasn't been able to, which is one of the reasons why he is in PT, because his gross motor skills aren't quite up to par. He did so while at the center and attached to an IV pole. Fortunately, Daddy is quick.

Does anyone have any contacts at the blood banks? It really ticks me off that they don't split blood units when the nurses ask them to, because the blood ends up going to waste. When they prescribe a transfusion, they usually write for a certain amount, especially with a little guy. He'll get 150 mL or 170 mL or something like that. An average "unit" of blood is somewhere around 300 mL, give or take 50 on either side. It depends on how much the donor was able to produce at the time of donation. Once or twice they have successfully split it up. I think he got the other half of a unit once when they split it, and if he didn't, likely another little tiny person ended up getting it before it expired. They'd have more blood available if they'd do that. If the right people got scolded for wasting blood, they'd be better about splitting units.

Anyhow, we are hoping that the Epogen has an effect and that he ends up not needing transfusions as often. If he only gets them once a month or once every 3 weeks, that will be an improvement for sure. Transfusing too frequently can cause some problems, in addition to being an annoyance for us because it is a long day. The nephrologist said that they'll be reevaluating his need for Epogen after he finishes what we have at home. If they still want to keep him on it, they'll hopefully start sending me a different concentration. He currently gets a pretty large amount--.825 mL as opposed to the .2 mL in the Neupogen shot--and he REALLY doesn't like it. The Neupogen shot has become, by comparison, not such a big deal. Not that anyone likes the process but he complains when he sees it, cries for about 5 seconds when he gets the shot, and feels better when he gets his hugs.

I ate some spicy food this evening. It was some Indian vegetables from Trader Joe's. Very tasty. I put no stock in spicy food triggering labor because I eat spicy food frequently. I don't think I'll be pregnant for TOO much longer, but I think I'll be passing my "due date" again, at least by a few days.

Waiting? We do that.

Waiting for blood. Hemoglobin is 6.8, and whites are in the toilet. Platelets are okay and may either go up or down.

The Boy is falling asleep on my lap. He got his Tylenol and Benadryl already, so the blood will be here soon.

It always seems like we're here on low white count days and the place is packed. Certainly that's true today. So I worry.

Also waiting, of course, for baby. When I am here already, it isn't a major concern. Call Daddy, call the dam, so someone can stay with The Boy, and get moved upstairs.

Wednesday, July 1, 2009

get some sleep and...

All of sudden everyone feels better.

I'd just as soon feel like having a baby but I really don't get that feeling anymore right now. The Boy is feeling okay, although he could use a nap.

Me too.

So no baby action yet. I'm due Saturday but..whatever.

well that explains it...

The Boy had something of an odd day eating-wise, and he had quite a lot to drink today, it seemed like. I had remarked on his eating habits earlier.

It all came back up right in the middle of one of our favorite restaurants, before any of us had even had anything to eat. First a warning shot, then *bam*.

Honestly, I'd never seen anything like that from him before, certainly not that kind of volume and force. We were apologetic to the other customers, explaining the situation (they seemed cool with it, considering The Boy's condition and age). The staff was very helpful as well with cleanup and trying to care for us. The Boy seemed mostly unfazed by the incident, as proven by the fact that he wanted to walk back and forth up and down through the restaurant (accompanied by one of us, of course). And of course, this is different from what a typical family might have done; most families would have just left out of concern for the child, but we felt fairly certain that The Boy was not otherwise ill and was feeling fine. He did drink water and juice and had a few bites of meat later, which might have made him feel better too.

He had a dose of Zofran at about 4 PM and this happened a bit before 6; Zofran isn't complete insurance but certainly very helpful. I gave him more of it a little after 8.

Working backwards a bit...we drove up to Grandpa's neck of the woods because Musical Daddy had rehearsal and has his summer program to teach tomorrow. He would prefer to have me nearby in case something happens with me going into labor. Coming up this evening also allows him some extra sleep. We went to one of his favorite restaurants in town with a former student of his who has finished his degree and is looking for a job teaching music. So we were talking job searches and teacher politics...not a very interesting topic for The Boy. Even without the puking incident, he was not the all-star dinner companion that he frequently can be. Factor that in, and he was "that kid." Helps that there really weren't any other little ones around that evening. You know...even though our child is generally well-mannered and easy to take out, flexible and cooperative, every child is "that kid" sometimes and no one is perfect. You roll with it. You do damage control. You get over it. I don't think that in this case there was anything we could have done differently. We didn't let him run around the restaurant on his own. We didn't let him throw food or otherwise screw around at the table. And of course the hugs were copious after he had gotten sick because he needed them.

So what am I doing up at 2:15 AM? Not sure really. I am not feeling so great. Signs point to the beginning of labor, maybe, or maybe not for a few days. I couldn't get comfy upstairs in the bed up there and ended up falling asleep on the couch for three hours. Now I'm in the recliner. No real contractions, as far as I can remember what those were like. Nothing frequent or timeable. Trying to get sleep because if this is labor coming up, I'll need to be well-rested enough to do my job.

I'll send Musical Daddy off to work in the morning and, of course, keep him updated. He is 15-20 minutes away from here, as opposed to 45 minutes to an hour from our house, and from here it is 10-15 minutes to the hospital as opposed to 25-30 minutes.

It is July 1st, and one of my friends said that I'll have the baby today, because it's her mother's birthday and her daughter was born last fall on MY mother's birthday. Wouldn't that be something.

All I know is, it will happen when it's good and ready to happen.