Saturday, April 30, 2005

Olden Days & Jack's Birth Story

Today while my younger sister was visiting at the NICU, we got to talking about olden days, as in 'back in the olden days.' It started by me commenting on Jack's size, that he was born big because he was expected to take his first breath then immediately start pushing a plow. Then we had to revise it. Actually, he wouldn't have been born at all.

Of course we can't get pregnant without help. So I guess Matt was supposed to leave me since I would be considered barren (male factor doesn't exist in olden days, and women get all the blame). Janie would never had been conceived. If by miracle she had been (we needed IUI for her), then we both would have died in childbirth because of her size (nearly 9 lbs) and position (sunny side up plus head turned). So no Janie, no Pazel and no Jack.

Say by miracle I survived her birth, still no Jack because again we couldn't have conceived him in the olden days. But say he had been conceived (a miracle since we all know it took IVF which didn't exist in the olden days), then he would have died in childbirth since he was breech (and more reasons to be explained in a few). But, IF by some miracle he would have been conceived and would have been born alive, then he would definately died from the Hirschsprung's. So in many, many ways he is a product of modern times. A son of science. Still very much a miracle.

I mentioned his birth which I hadn't gotten around to telling you about. When we got home from the hospital things were so crazy with him crying, not eating, not peeing, not pooping, getting yellower, etc that I just didn't have the time or energy.

His birth was very planned because we knew that he was breech, he was big, and that I had a previous c-section. So we knew the date and time to come in. I remember that they gave me some funny drug to relax me which made me extremely sleepy. I kept taking 30 second cat naps on the operating table then waking up and asking Matt if the baby had been born yet. I was so afraid I'd sleep through it. They had to work hard to get him out. When they did, and I heard him cry, I cried. All that time waiting. All the fears during pregnancy. I heard him and believed. They all asked me his name and we didn't have one. He weighed 9 lbs 5 oz, not bad for 39 weeks and no gestational diabetes.

When they were closing me up, I closed my eyes and went into a semi-nap state. I could hear them having a conversation about schools. At one point I heard a male say, "We're taking this out, right?" My OB answered, "No. We're just tying the tubes." He answered, "Oh. I guess I'm so used to working on the 5th floor where we're always taking stuff out." Meanwhile I just layed there, not saying a word but very glad my OB was still in charge.

What I didn't know that my OB later came and told me was that it was "fortuitous" that our baby was born at that time. He was a double footling breech meaning he was sitting up in my ute with both feet in my pelvis, kind of like a squat. This position makes it very easy for the umbilical cord to dip down between his legs to the cervix and prolapse, or come out and get pinched off. This would cut off oxygen to the baby. She said that when she opened me it was already partially prolapsed. If we hadn't scheduled it for that day and that time... well... she just repeated that it was "fortuitous."

I was thinking about the word "fortuitous" again when the surgeon and neonatologist told us that if we hadn't brought Jack in to the emergency room when we did, he would have gotten much sicker. Another day home and he would have died. His intestines were all so very swollen and he was so dehydrated, that last day and night at home he didn't cry at all, just slept. He was in a lot of pain and just giving up. Life was too much. It hurts me to even think about it because you never want your baby to hurt or to give up. There's so much he hasn't experienced yet. And we would do anything to help him, we just didn't know. Maybe I'll have to have his middle name changed to "fortuitous."

To anyone pregnant, I hope I don't scare you either with the Hirschsprung's or with this birth story. The prolapse is rare since being in that double footling complete breech (squat) position is rare. And HD is only 1 in 5000 births, so is also very rare. So don't let this worry you or scare you in any way. Enjoy your pregnancy and when your baby is born, enjoy your baby. Take lots of pictures and don't listen to any horror stories including mine.

Thursday, April 28, 2005

Wireless Revolution

Yesterday morning was terrible. I walked in with my video camera to take a little movie of Jack to show to Janie. What I found was Jack sleeping in a puddle of his own vomit. It was caked over one side of his face, all over his bed, his clothes, and his blankets. I looked around and in this room of 10 babies, there was only one nurse who was far on the other side and very busy with another baby. Okay, I'll work on cleaning him up. His nurse or another will be along shortly. I start cleaning him up.

I want to take him out of his bed but the nurse has tethered his feeding tube to a giant syringe on the side of his crib. I read the notes and she tried feeding him for 15 minutes about 30 minutes earlier, then put the rest in this syringe to go in his tube. His feedings had been increasing so much that he's been throwing up when taking in large doses through the tube. I wait for a nurse, any nurse, to come into the room besides the one that is very busy (and a yell away). I wait a little more. A little more. There are no nurses coming in, only mothers. Besides the one nurse across the room, the usually busy room is completely empty of nurses. Is there some sort of party going on somewhere? Where are all the nurses?

Then I start to get upset. They left my baby alone! He was sleeping in his own vomit and no one noticed! This isn't some 3rd world orphanage, this is the NICU! Where is everyone? Finally a respiratory tech walks by, sees my face and asks if I need help. Yes, I do. Can you get a nurse? My nurse is on break but she's able to get another nurse to come into the room who immediately starts helping me.

By the end of the day I've talked to many people about it including his nurse, the charge nurse, the social worker and the nurse manager. No one can tell me how long he had been laying like this. Instead they tell me that nurses need to take breaks. Yes, I understand that, but shouldn't someone have been watching her babies for her while she was on break?

They try to tell me that the monitors were on so he was in no danger. Perhaps, but I don't want him laying in vomit. Besides, if monitors were all that were needed, then why have so many nurses? They need that human touch. A baby with a history of throwing up on a large feed needs to be checked on after being given an even larger feeding. A monitor is not enough. They need someone to look in on them now and then. A person who cares.

They also tried to tell me that this could have happened to me at home. No, I have a daughter and I never found her like this. When I'd feed her, I'd burp her and if she needed to spit up, she'd do it then. If I did lay her down in another room, I would have heard her get sick on the monitor and checked on her. Heck, I checked on her all the time anyway just to make sure she was breathing.

I tried to explain to them that it's all about trust. I can only leave at night because I'm trusting they are taking care of my baby. This means more than just making sure his heart is beating and his respirations are normal. This is about taking care of his needs. I don't think they got it. Even though they would apologize, they would follow it up with "But..." They have no idea how hard it is to not be there with him all the time. They see bad stuff all the time that a baby laying in and covered with vomit must not be that big of a deal. To me, it was very distressing. I'd had enough of the feeding tube.

So during rounds, the neonatologist and his gaggle of interns, residents and who knows who else (who all happen to be young and female and nodding at whatever he says) were discussing my Jack and his difficulties eating. I then offered up the information on how well he had done at the recreational breastfeeding. I sold my neonatologist on letting me breastfeed on Jack's demand (not scheduled) and suspending all bottle feeds while I'm there. (I think they also wanted to appease me considering that morning.) The free breastfeeding went so well that this morning they removed his feeding tube.(!!!) No more forced feeds. If they give him a bottle, they have to take the time to hold him.

Because we got a second culture back indicating infection in the deep line, they also removed that this morning. (!!!) He then had to have an IV put in and as much as I hate him getting poked, I'm really glad to have that deep line out. (He's finally wireless! I must have said that a million times today. No one gets it but I get a kick out of it every time.)

Today I got to unplug his monitors and carry him off into the pumping room for breastfeeding in private. No beeping, no people, no other baby emergencies, no fiddling with the scales or portable screens, just Jack and Matt and I. (Matt got the day off today on account of rain.) He latched beautifully each time and stayed on for regular feedings. It was like Pinnochio turning into a real boy. Jack was a real baby; untethered by tubes or wires or monitors and able to easily breastfeed.

Matt and I joked about taking him and running. I asked him to act as a block, and I'd run with the football. Our nurse warned us that she had installed lojack. He was not yet paroled, just on conditional probation with house arrest. It was just so nice to hold him and walk with him and feed him in private. The good news is that he should be able to leave on probably Monday or Tuesday when he finishs with the antibiotics. Actually, he should be home by now if it weren't for the infection and SVTs (that one time 12-hour heart trouble).

And I didn't have to pump once at the hospital today. I hate that pump. I really, really do. Pumping doesn't feel anything close to breastfeeding. It's so mechanical. So utilitarian. So cold and bland and colorless. I become a producer of milk instead of feeder of baby. Technically its the same thing, but I think you know what I'm trying to say. I'll be really glad to get him home and be able to pump only 'recreationally' if you know what I mean.

I'm starting to feel like I can exhale a little. I even left tonight at a reasonable hour. I'm very, very excited.

P.S. Thank you all for advice yesterday. I had to delete a couple of entries including last night's because Matt was fooling around on Netscape and found my sight after searching the name of our family's website. It had to do with the picture I had posted of Jack a few days back. Some people could find this in that way, then read what I wrote and take my personal feelings very personally... and so on with all my paranoid stuff. I read each comment at least a few times before I deleted the post and got some great ideas. Definately not assvice. I feel like Sally Fields in her famous oscar acceptance speech except to change it to "You get me. You really get me." I really have been beating myself up over all these feelings. Feeling that I am such a piece of dirt. You are so good to me, helping me up when I'm feeling so low. Thank you. Truly.

Also, although I say a lot of things about the nurses, almost all of them are very kind and very caring. There are a few kooky ones and maybe a negligent one here or there, but for the most part I really love them. They do take good care of Jack and try to see to what we need too. I'd love to think of something I can do for them when he finally gets to come home. I know it sounds funny considering how I started this post, but it is the exception and not the rule. Any ideas to express my gratitude?

Monday, April 25, 2005

3 weeks old today

Yesterday we tried doing some normal things. We went to Costco and Safeway because we were out of food. Everytime I'd see a baby I'd think, "I have a baby too." I wanted to have his carseat or carry him in the sling or push him in a stroller. Janie pointed out every baby for me so I couldn't miss them.

After a while, things get so normal that they get abnormal. I can't just slip back into life before baby. It's as if we never went through IVF or pregnancy or ever had a baby and I hate that feeling. It's like pretending this never happened or that the whole pregnancy was imaginary. Like denying Jack that he's part of our family.

Suddenly in the middle of the store the panic will hit me. I've got to get to the hospital. I've got to be with my baby. He's all alone! And I can't get there soon enough. The problem is that I can't just ditch out on Janie that quickly. She's enjoying the normal day. By trying to leave I'm suddenly bringing her back to our messed up reality and she cries. And my heart breaks. I can't be two places at once and I'm torn. I can't race out of there, but I can't stay and keep my mind off him either.

Last night Jack had a long period of being awake. I held him facing me so I could look at his face. He's three weeks old today, but I swear he looks three months. He's got no neck, just a crease. He's got chubby cheeks, chubby arms, and roly poly legs. I nibble off each of his round toes. He was wearing a dark blue t-shirt that matched his eyes. I know he can't help it, but he smiled at me a few times. So beautiful. I started singing "You're just too good to be true. Can't take my eyes off of you..."

He ate nearly 15 cc's very easily, then fussed through another 10. He's getting better at eating, but still confused on the concept.

Do you know what a NICU nurse should never say to a parent? "See you next weekend."

Damn. I hate that.

Saturday, April 23, 2005

Day 13 - Back to Normal Rhythm

The digoxin worked. Yesterday his heart just went back to normal rhythm and speed. The cardiologist said he will stay on the digoxin for the next 6 months and we will be bringing him in regularly to have his heart checked. We also have to go through CPR and learn to use a stethescope to check his heart rate. They still don't know what caused it, and the cardiologist strongly indicated that it wasn't the deep line although I still have my doubts.

Then we were able to go back to starting him on breast milk. The problem with feedings in the hospital are that they are done every three hours when I've always believed in feedings on demand. Of course our little guy hasn't eaten in weeks so he can't demand. But it's hard to feed a baby at exactly 3pm when he's asleep. When I try to feed him, he screams. He doesn't have a strong sucking reflex, but mostly I think he's just not used to having liquid come out when he sucks. And, my opinion is that he's also tired from all the heart activity and has memories of feedings being painful back from his first days of life. After a lot of work and screaming, he'd eventually choke down 5cc's or the equivalent of a teaspoonful, then fall asleep again. Feedings are the only times he screams, and he really lets loose with it. Everyone looks over like I'm torturing him. He has no idea that feedings are supposed to be soothing times.

Yesterday Matt got to change the colostomy for the first time. I tried to help, but really Matt did everything. Before Jack can be discharged I will have to demonstrate that I can do it. It's especially important since he'll be home with me everyday.

Today Janie and I are hanging out together. A guy came by my house and offerred to pull the weeds for $20. Usually I would not even answer the door for some strange man I don't know. Yet, I'm not myself and far less afraid of things. Instead I accepted his offer and now I have a weed-free front yard for very little money. It will surprise Matt when he comes home. I don't think he'll even imagine that I did it, so he may be confused how it got done.

I could write more and have more to say on many things about all this, but I've got to get to playing. Janie is wearing her dress-up wedding dress and holding her baby ducky wrapped up in one of Jack's blankets. It's so easy to have her ducky play baby when we have so much baby stuff in the house not being used. Maybe we'll make cookies today.

(Wrin - You did a great job translating my vague understanding into the exact stuff the cardiologist said. Thanks!)

Friday, April 22, 2005

Day 12 - Easy Day, Hard Night

Today we had our education class. It was us and another mother whose baby also got a colostomy. As the ostomy nurse was teaching I started to get panicked. It was similar to when I was trying to learn how to scuba and first went underwater with the respirator. My brain said, "No. I can't do this. My baby doesn't need this. I can't do this. I can't." I tried to give the outward expression of someone who is listening, but inside I wanted to run away, far away, where babies are born healthy and I never have to see another picture of a prolapsed stoma. When it came our time to practice on the doll, I had Matt go first. Seeing him do it made it easier for me to do it. And I could. Of course doing it on a baby who is moving around with real skin and real stoma will be something else. We'll see.

The ostomy nurse also gave me a doll that has a stoma. The dolls are made to give to kids who have stomas so that they can have a doll like themselves and play at putting on the "appliance". (I hate the term appliance when used in this context. Sounds like I'm putting a toaster on my child.) Anyway, I'm going to be giving this doll to Janie when I try to explain about her brother Jack. I have no idea yet how I'm going to do it, and there certainly aren't any books specific to this situation, but it's going to have to happen at some point.

We tried to give Jack 10cc's of breast milk today (like a thimble full) but it wasn't received as I had hoped. Once again I had imagined that he would love it and melt into my arms as I fed him. Instead he cried and fussed as I tried to feed him. He finally took about 5 cc's then threw up green all over me. It was then decided that maybe it was still too early for breast milk, so back to Pedialyte.

At about 2pm I suddenly remembered that I had a paper due today for one of my classes. I quickly pumped then drove to school and wrote possibly the worst paper in my college career. I had attempted to explain how the experience of being a patient's parent had given me new insight into healthcare which will make me a better hospital financial analyst. My recommendation was for every non-clinical leader such as in Administration or hospital Finance to each year shadow a clinical person to keep a perspective of a patient and/or caregiver. Unfortunately, because I wrote it in such a short time it came out all over the place.

When I got back to the hospital, I knew something was wrong when I saw all the nurses and doctors crowded around Jack. His heart was too rapid and too irregular. Instead of the usual 170 bpm, it was ranging from 210-300 but was all over the place. They said it's some sort of irregular electrical impulse. They don't know the cause. First they tried pulling back on his deep line to fix it. (The deep line goes into a vein on his wrist and threads its way into his heart.) If the deep line caused it, then this would have fixed it, but it didn't. Then they tried giving him one and then two doses of some medicine that also generally has immediate effects, but that didn't work. Then they had to draw lots of blood to check his blood counts, electrolytes (normal) and blood culture for infection (takes 3 days to get back). They couldn't get enough blood to do the blood count because he was screaming and making his heart go too fast, so they will try again in the morning. Finally they gave him another heart drug called dig-something which he will be getting every 6 hours. This drug is supposed to have a slower effect, so we may not see anything immediately.

He was moved out of his little private room, back to front and center where he could be monitored better. When I held him again he had all the EKG wires on him, an IV in his scalp, plus many new purple bruises on his scalp, hands and feet from where they tried to get blood. I hate that. I really do.

Tomorrow he will have an echo (I think echocardiogram) which is best desribed as an ultrasound for the heart. The cardiologists conferred tonight and will meet with us tomorrow morning. Usual suspects for this type of sudden heart problem are things such as the deep line tickling the heart, infection, something they're born with, or unknown. They don't think its infection because he shows no other signs. They don't think its the deep line because they pulled that back. They doubt it could be something he was born with because it didn't show up until now. That leaves us with unknown. Unknown. He has a problem with his heart of which they don't know what caused it or how to fix it. &*$$@#&*%

So my heart is having a hard time beating tonight. I had the worst time leaving him, but I needed to get home because I have to get up with Janie tomorrow and I want to get to the hospital as early as possible. Luckily Matt will be there first thing. He's convinced its infection. At rounds in the morning the neonatologist had discussed how well Jack was doing but had also said that there was always a possibility of an infection from his deep line. I took it as another one of those cya (cover your @ss) sort of warnings. All day long Matt had been saying that he felt something bad was going to happen because things were going too well. When it all went to hell this evening, Matt kept telling me that he knew it. He knew it was going too well. He knew something bad would happen. Like the end of every horror movie when the monster who was supposed to be dead comes back. I just kept telling him to stop it. I don't want to hear about it. I know, but please stop. All day I had begged him to let it go, and then he was right. And I'm back in hell again.

Do you ever feel like just looking at the sky and yelling, "What? What?" I'm not religious, so it's not anger at God, just a question I'd like an answer to by whatever or whomever. What do you want me to do? What do you want from me? What more? What?

Driving home tonight I passed a dead deer laying on the side of the road. I almost lost it altogether. You know, final straw time. She looked like a beautiful deer, probably the same one I saw grazing at the park near my house just a few nights ago. I just don't fu-king get it and thinking about my son with his heart working too hard or the deer just laying there I just don't get it.

I'm sorry this ended so badly. It's been another difficult night.

Wednesday, April 20, 2005

Day 11 - Some important milestones

Yesterday was a tough day. Jack was in pain most of the day. We couldn't touch him or he would cry. They didn't want to increase his morphine too much because they didn't want him to end up intubated (tube down his throat to help him breathe) and they also wanted his intestines to wake up and start working.

Then at 9 last night, he woke up. He looked around. He was the happiest I've seen him in a long time. I could touch him and we could even take his blood pressure without so much as a fuss. By 10pm I was holding him again, which only made me stay until after midnight because I had missed holding him so much.

When I got to the hospital this afternoon, I got to feed him. It was pedialyte and only a tiny, tiny bit. He's never really had a meal and hasn't tried to eat in 10 days, so it was very confusing to him. I think he hates the taste of pedialyte. He'd take only a suck or two then scrinch up his face to show us he hated it. Every three hours I'd try to get him to eat a little more, and he'd make faces or cry or fall asleep to avoid it. Tomorrow we should be able to start him on breast milk, which I hope he likes much better.

Tonight he also had his first stool into his colostomy bag. Our question had been what he could be pooping since he hasn't eaten in so long, but apparrently your body sloughs cells and such even when you're not eating. Learn something new every day. To me it looks like left over meconium. The bag over his stoma is clear and his first poop in it was pretty disgusting (looks like seaweed, sorry), but to us it was reason to celebrate. He needed to demonstrate that it worked and that the intestine we've kept is good so that we can get the green light to move on to food.

Tomorrow at noon we're going to a class on caring for the stoma and changing the bags and all that. It's held by the ostomy nurse who is very, very nice. She's already gave us papers to read, and so far it looks to be a very intensive procedure to change the bag. But, she promises what will take us 40 minutes now will one day soon take us only 20. Also, what surprised me was that the bag only needs to be changed every 3-5 days?? I figured it would be at every diaper change or at least once a day. There's so much I need to learn.

I am starting to feel a little better. I'm able to turn on the radio and listen to music without crying or finding it totally inappropriate. I even curled my hair today - a huge accomplishment. I've been looking like the train wreck I've felt like. Last night I even went to my class at Berkeley for 2 hours. The class applauded my return and asked me how I was feeling. I answered exhausted and many chuckled since they don't know about the NICU and figure I'm just tired from being up with baby. I wish.

One of the things I'm looking forward to is breastfeeding at night. I pump right before I go to bed. When I wake up in the morning, my breasts are so full that I could probably put out a fire accross the room without ever getting out of bed. Tired as I am, I have to get up and pump. With our daughter, she co-slept with us. During the night I'd feed her right there in our bed. Sometimes her and I would stay up and watch Letterman and Conan when she had the big eye (husband's term for wide awake). Because I fed her during the night, I never woke up super engorged like I do now.

Janie has been faring okay. The other day she broke down when a ladybug flew away off her hand. "The ladybug doesn't love me. She flew away from me. She doesn't want to play with me." It was obviously what she was feeling about this whole Jack situation and not the ladybug. Even today she got upset when I asked her to clean her room and told me that I don't love her because I make her clean her room. I only love Jack and Daddy. I had been trying to decide if her being upset was manipulation or real, but figured to treat it as real because of all that's going on. Later she told me that she was fibbing because she knows that I love her with all my heart and soul.

I guess that's the other thing I'm looking forward to. Getting Jack home so that Janie can spend time with him. I want to be able to hug them both at the same time. The two halves of my heart in one spot.

I can hear Matt snoring in the bedroom. I'm going to have to go in there and make him rollover so that I can sleep. He hates that. This week when I've gone to bed he will wake up and ask me how Jack's doing, since I have the night shift at the hospital. Tonight's report will be that he's doing good. Hates pedialyte, is pooping in his bag, and was sleeping well when I left. That should be good enough to get him to rollover and sleep well.


And to all of you who have been commenting - thank you! I read them every night and want to respond back to each of you but I've been too exhausted to do much else than write an update. The support has been so important to me and kind of boosts me up when I'm making my slow shuffle into bed. I have also really appreciated the advice of those who've been there either in the NICU or having special needs kids, or having had an illeostomy or child with HD or knowing someone with HD. I plan on looking into that online support group as soon as I'm human again. I think I aged at least 10 years last week. There was a moment in the hospital where I felt that I couldn't handle it and had reached my end. I actually imagined standing on the roof looking over the edge. Every time my heart beat it hurt. But then I thought of Janie and thought of Jack getting older and I knew that my only option was to deal with it. Pazel, deal with it. And as much as I thought I couldn't, I didn't have a choice. I had to. And taking all the bad news each day and watching him in pain or hungry or just laying there with the monitors took away all my thick layers of protection. I had to take everything moment by moment and forget everything else. I had (have) no idea what day it was, what the news was, or what the weather was. I didn't care so much about what I looked like or finding the right words, or other people's feelings or family conflicts, or my job or my school or the bills or a-n-y-t-h-i-n-g. I could drive through the city of Oakland at midnight and not be afraid - for my baby was sick and no one could hurt me more than that. I say all this but I'm not through it or past it or much better. Well maybe a tiny iota better because I feel like we're climbing back down from Everest and so we will eventually reach the ground again. I am starting to have hope again. I'm afraid. I've been burned. I thought we had it at his birth when I heard him cry for the first time. I think I probably cried more than he did. I'm so afraid of trusting and having him get sick again, I don't know when I'll relax. I don't know. I'm not there yet and I don't know when that will come.

And I've totally sidetracked my point which was to thank you for all of your kind words, and your hopes and prayers. Above all, I do still feel very lucky to have him. If there was a choice, of course I'd rather not have had problems so that we all could have avoided the pain. Yet, if it was to have him as he is or not have him at all, of course I would choose to keep him. I think if you met him, you'd fall in love with him and you'd do the same.

Tuesday, April 19, 2005

Day 9 - Evening Update - Stoma

This morning we got the news that the HD has only affected half his large intestine. (YAY!) The doctors were very surprised as they expected that all his large intestine would be affected, and possibly some/all of his small intestine. This will make a huge difference as to his future quality of life. Our big gamble to not put in the illeostomy during Friday's surgery and instead wait to see if any of the large intestine was okay actually paid off. We could not believe it. Something good has gone our way for this little guy.

Who ever thought we'd be happy that our son would get a colostomy?

Of course our joy was overshadowed by reality. The nurse practioner gave us directions on how to care for a stoma and it is very detailed and seems overwhelming. She said that tomrrow we will learn on dolls, then eventually try our skills on Jack. She also went on to explain how we will probably be bringing him in to their clinic once a month to get everything checked out until his final surgery 8-12 months from now.

The physicians stopped by to talk about his next surgery, the one to put in the stoma. The neonatologist also talked about all the possible side effects of having a stoma and of later having the final surgery. There will have to be a few dietary things to watch for lifelong, and potty training for pooping may be delayed, and he may get bad diaper rashes as an infant. So far nothing we can't handle.

The most surprising thing was that he did end up on the surgery schedule this evening, and has only been out of surgery the last 3 hours. We thought it wouldn't be until tomorrow.

It's hard for me to look at the stoma. They describe it as a rose bud, but to me it looks like tiny lips puckering on his abdomen. There is a clear bag on it which right now only has blood in it. Very scary. Very intimidating. I'm hoping to be able to hold him tomorrow, but I'm a little scared.

I hung out tonight watching him after the surgery because he was in some pain. They were giving him morphine, but it didn't seem to help. If they'd lightly touch him or talk he'd wake up and make a cry face. Very sensitive. When I left they were ordering him a morphine drip so that he could get the medication more regularly. I hate the pained and tired cry. I hope that after this we won't have to hear it again for a long time.

So the good news is that the surgeon says we should be able to start feeding him in about two days. The closer we get to feeding him, the closer we get to taking him home.

The bad news is that this is all still so very hard to take. Sometimes I'm right on top of it, smiling and ready to learn and accept. The next minute the wave crashes over me and I'm feeling scared or sad or angry or still in shock or some combination of all or any. He's just a baby. It's not fair to start out life this way.

I could continue, but I'd better not. Then I'll just start crying again until my nose is all stuffed up and I can't sleep.

Today the neonatologist told us that since this is genetic, we need to speak to a genetic counselor before we have another baby. We told him that we were done. For sure. I had my tubes tied at Jack's birth and everything. I'm very glad we did it at his birth and not afterwards so that he will someday know for sure that it's not the HD that kept us from having more babies after him. Actually it was the infertility rollercoaster nightmare and a chance to escape it while we had a chance.

Tomorrow will probably be a tough day as he is recovering from tonight's surgery, but I'm glad that we're now headed towards home. There's much that I have to do and learn and get over, but he's going to be okay. I just know it and have to believe it. And that's all that matters right now.

Monday, April 18, 2005

Day 9 - Morning Update

No word yet on the results.

Over the weekend, I spent less time at the hospital (only 6-8 hours per day instead of 12-14) and more time with Janie. It was nice to have a break, but at the same time it was very difficult. When I'm at the hospital I feel guilty that I'm not with Janie. When I'm with Janie I feel guilty that I'm not with Jack. Two kids but I can only be in one place at a time. I'm looking forward to when they are in one house so I don't feel so split in half.

Yesterday Jack got to put on a onsie, first time wearing clothes in a week. He was also moved from a 'table' to a crib. I take these as positive things.

Today he turns two weeks old. Here's what I've learned about Jack (besides HD) in that time:

  • His scent. It's sweet and familiar but hard to describe. Kind of like lemon cookies.
  • He hates diaper changes, getting his temperature checked, and the blood pressure cuff.
  • He loves to be held. He snuggles in and stops crying.
  • He likes to sleep with one arm up. It doesn't matter if he's sleeping in his bed or being held.
  • He loves his pacifier. With our daughter I was very anti-pacifier so she never used one. With Jack, he gets so hungry but he can't eat. He'll suck on that pacifier with a fire and determination, and it usually helps him to relax a little.
  • He farts. The doctor said it doesn't mean anything as to the health of his plumbing, but each time he does it I get a little hopeful.
  • He likes to sleep on his tummy with butt in the air. He can sleep on his stomach at the hospital because of all the monitors. He's going to be upset when he gets home and can't sleep on his tummy any more.
  • He has the tiniest eye lashes. And his brown fuzzy hair is so nice to touch. I can't help but stroke his head all the time.
  • He is probably the largest baby in the NICU, and to me looks to be the healthiest looking, breathing room air and having no emergencies. He's very quiet and content, so probably the easiest baby for the nurses.
  • He is irrestistable. I can't help but love him.
This weekend as I was playing with Janie and working on chores, it's easy to forget a few minutes that I even have a baby. I'm not pregnant anymore. There's baby stuff everywhere, but it's all brand new and unused. I have to pump every 3 hours, but I really haven't been able to have a full feeding session with an actual baby. I drive around with an empty carseat in my van. It's like I don't have a baby but that the whole thing was a fantasy. I created the miracle pregnancy and beautiful baby in my head.

But then I go to the hospital and I get to hold him. And I feel like his mother and that he is my baby. I smell him, I touch him, I kiss him, and just stare at him as I rock him.

I'm scared of getting today's results. That it will send Matt and I back down to that dark place. That my baby is then going to be able to go into the next surgery at a moment's cancellation. That he will be in some danger again while he's in surgery. That it will end up with a stoma for sure. There's no avoiding it, and I know it will happen, but even now I still hold out the tiniest hope that maybe they're wrong. That all these biopsies will turn up with cells and he will only need a small operation.

So foolish.

Friday, April 15, 2005

Day 6 - Confirmation

Although our meeting was at 8, we were finally able to have it at 11. The delay was unavoidable because of other surgeries the surgeon got called into. We all sat down in the conference room; the neonatologist, the surgeon, a social worker (better one then the one we'd had since this one was more interested in helping than hugging), Matt and I.

The meeting started with the results of the biopsy from yesterday. It was confirmed that it is HD. There were no nerve cells. The next thing to find out is the extent. How much intestine lacks the essential nerve cells?

We asked many questions on the next surgery. Many. Only an hour after the meeting little Jack was wheeled into the OR and didn't come back for nearly 4 hours. During that time I couldn't help but imagine the worst. That they couldn't revive him or he stopped breathing or they found something worse wrong. By the end, I was so happy to see him alive and peacefully resting in his isolette that I really didn't care about his small incision.

For this surgery, they did 5 biopsies of his large intestine and removed his appenidix. Test results should be back on Monday. If his appendix has the cells then the small intestine is probably okay. They would then check the 5 biopsies to see where in the large intestine the cells start and stop, a.k.a the transition zone. In a surgery on probably Tuesday he would have the stoma put in above the transition zone, which means having the intestine exit the body out the abdomen.

If his appendix does not have the cells, then the small intestine is probably not okay. Then in the surgery on Tuesday they would open him up for taking samples of his small intestine. And he would still end up with a stoma, but farther up. Maybe at that surgery or another after it.

Basically, in about 75% of HD cases the transition zone is very clear on the films from the barium enema and x-ray, and usually is somewhere in the lower intestine. For our son, it is definately not clear, so much so that they think that his whole lower intestine is affected, and it could reach through all his small intestine too. This is worst case scenario, but it looks like it may well be the case. One can have a good life without the lower intestine, but things are not so good without the upper one.

So we've gone from hoping for a bad case of constipation to hoping we can save some small intestine.

This really sucks. I'm sorry, it just does. I don't have a better vocabulary than that to describe it. If your child looks sick, you are dying for them to help them get better, whatever it takes. But with Jack, he looks so healthy and perfect. It's so hard to hand over such a beautiful child for yet another operation and knowing that there will only be another on Tuesday.

What they offerred to do today was to do the stoma at the same time as the biopsies and appendectomy but it would be at the junction between the small and large intestine. Although they do believe that the whole large intestine is affected, I'm not there yet. I couldn't handle the thought of giving him this stoma yet. Not yet. I wanted the results of all these biopsies. I want to know if there's any chance of saving any of his large bowel. Please. And I'm not sure if we made the right choice or if we're just subjecting him to another surgery, and nothing could be more painful for us.

Tonight Matt had to rush out to mail or papers to file for a tax filing extension. Needless to say, we didn't get our taxes done in time. Then we stayed late at the hospital with Jack. When Matt got to the post office, there was a big sign saying that they closed at 11pm and it was 11:15. I went online and couldn't find another one that stayed open any later. I couldn't handle it. I broke down over the stupid taxes. Then just now he called and said that a nice woman met him at the door, took our envelopes, scolded him, but stamped them today. It seems like such a small thing but such a large thing. We just need something to go in our favor. I'm tired of bad news day after day. Of nothing ever going our way. I can hardly hold myself together anymore. It's amazing I make it home each night, but I guess some deep part of my brain takes over and drives.

So this weekend will be all about waiting and watching Jack recover from this surgery to get ready for next week's. And I promised Janie that tomorrow her and I will have some fun. She asked if we can go to the park. Baby, what a small order, I'd be glad to take you to the park. I'll push you on the swings as long as you want. Until my arms fall off.

Thursday, April 14, 2005

Day 5 - Anger

I ran out of the shower to answer the phone and it was my husband. They were rolling Jack into surgery. I did not get my questions answered. I did not get to see him off. I was pissed.

After the surgery (he did fine), the nurses in the recovery room were telling me how cute he was etc, but I couldn't say a thing except that the surgeon didn't bother to speak with me before the procedure. They paged the surgeon who amazingly decided to make an appearance. When I reminded him he didn't talk to me, he said he talked to my husband, as if that would be enough. Matt is not a surgeon and he could never answer my questions. I find that excuse to be very weak. How does a surgeon reconcile to himself that it's okay to perform surgery under general anesthesia on a 10 day old baby without first talking to the mother? I felt that I was being punished for pumping. If only I hadn't been pumping I would have been by his bedside at the time the surgeon came around.

So the surgeon, while checking the clock and his beeper all the while, finally started to explain what he did that day, the results of Tuesday's biopsy, and what may come next. This was all in maybe 5 minutes at best, but that's very generous. At the beginning of each thing he would say that it was too complicated and complex but he would try to explain anyway. Like he's repeatedly telling me that I'm too stupid to understand. What makes them complicated is all the stuff he leaves out. He told us that if Jack has HD, then the next surgery will be opening him up, taking multiple biopsies of his large intestine, then routing the end of the small intestine outside the body (stoma). The multiple biopsies are to determine the good and bad parts of the large intestine, but then they end up skipping all that anyway with the stoma. Why?

(I also found out that we may not get the results of this test until Monday or Tuesday. Well you know the pathologists don't work weekends. So I'll have a hungry upset baby on my hands all weekend so that they can have fun. You know, I used to work weekends and I know it sucks but some things need to continue. I think healthcare is too important to just shut down for those days. Why not stagger days off so that someone is always covering the weekend so that kids don't have to suffer through it waiting for Monday?)

Of course the surgeon had to go. And I was still pissed. I didn't get my information and I wasn't near satisfied. I was so angry that I couldn't talk.

We wheeled Jack back into the NICU where every nurse seemed to see my tears and decided to come see how I'm doing. I just shook my head. I didn't want to talk to anyone. Not now. This only spurred them on. Now I've got not only every nurse in the room but the nun and social worker coming to me to try to talk me about my feelings. I'd close my eyes, put my head down and just wait for them to back off. I'm not in the mood to talk about my feelings! What I need is information, not counseling! Why is it that each one has it in her head that she's going to be the one I'm going to want to open up to? Can't they see from my reactions to all the offers that I just want to be left alone with my son and husband for awhile?

I stewed. Just sitting by his bedside. I didn't pick him up because I didn't want to hurt him, or wake him up so that he would remember how he was hungry. At one point Jack was obviously in pain so I got the nurse to get him some morphine. Why do I have to track someone down for this? Why can't it be anticipated that after surgery he would need pain meds?

After about a few hours of silence, Matt and I went to lunch. We didn't talk during the whole lunch. At the end, I finally started talking. I told him how angry I was that they wouldn't give me information. I told him that I wanted them to tell us why we can't try feeding him to see where the blockage is or how he handles it instead of going to surgery. I wanted to know why they would do all the biopsies on his large intestine just to bypass it in the same surgery. Why can't he do the biopsies laproscopically or the POOP procedure where they do the pull-through at the same time so that there is no stoma? Many many such questions. We decided to demand a second opinion, especially from a pediatric GI physician instead of a surgeon.

Back in the NICU we requested as such to the nurse. He told us it was a good decision and then asked us why. We told him and the strangest thing happened. He told us that he had Hirschsprung's and then started giving us more information than we had gotten in all the other days in the hospital from everyone else combined. It was incredible. He explained how feeding him could cause infection or death of intestine and so on that would be dangerous for our boy. How come no one told us this stuff earlier? He gave us first hand information which on such a private matter as a colostomy is a big deal. He also printed out some things for me. He told me that by all indications and early test results my boy probably has HD, but that no one wants to tell us that until they know for sure. I appreciated his truthfulness. It helps me to prepare for these next surgeries which will be even more invasive.

But once I started my rants on not getting information, I couldn't be stopped. The other nurses tried to tell me, "Oh, all surgeons are like that." As if that is good enough. I don't care if all surgeons are like that, I need more. They brought over the neonatologist and I expressed myself. He started explaining things, such as that they would have a pathologist checking the biopsy slides during the next procedure while it was going on so that they would keep as much of the intestine as possible. This is new information too.

In the end, we told the neonatologist that there was too much that we didn't know. The current operating procedure of only getting to meet with the surgeon on some wild chance that our paths crossed and he had a spare minute to give us wasn't working. We need a sit down meeting at a set time and I would accept no less.

So we're meeting with the neonatologist and the surgeon together tomorrow at 8am for a sitting meeting. Good.

And I've been writing down my questions. And some of them are with regards to this surgeons experience with HD and proven outcomes. I want him to sell himself to me rather than just expect me to just accept that he's supposed to be fabulous.

I've heard that anger is one of the steps in the grieving process. Maybe this is it. Or maybe I am just angry because I have good reason to be angry. We deserve communication and information, and I sure as hell should be consulted before anyone cuts on my son. I wish I could walk into that meeting tomorrow as a sharp and cool business self, but unfortunately that woman is currently on recess. Instead it will be the emotional near basket-case that all this stress, no sleep, post-partum hormones and possibly pain on my baby have created. It's not fair. It will take all I have to make it not be just a rant session. My goal is information for my son and to see if it's worth it to keep this surgeon. And I'll probably still ask for that second opinion. Insulting to him? Who the hell cares.

Wednesday, April 13, 2005

Day 3 - His Due Date

Yesterday 4/12 was his due date and he turned 1 week and 1 day.

All in all it was a much better day. I got Janie ready for preschool in the morning while Matt got up early and went to the hospital. Matt's job is to leave early from the hospital to pick up Janie from school, give her dinner and a bath and get her to bed. He normally picks her up every day and does all the evening activities while I'm at school. The only difference is that I'm not at school, I'm staying late at the hospital with baby Jack. We can't cover the whole clock this way, but nearly so. Matt and I also get to be there together during the day and have a quick lunch together. He was so positive and sunny when I came in yesterday, it was very contagious. He's a morning person (usually waking at 4:30), so loves having our morning shift.

Janie is doing well but she misses her baby. She asked me when I was going to have another baby in my tummy; I guess because this one didn't work out so well for her. Months of waiting to have only two days of being home. Kind of a tease for a 4 year old.

When I got to the NICU Matt told me that Jack had opened his eyes and had an awake period. He also got the tube taken out of his rectum so he was able to hold him, the first time for either of us since we brought him in on Sunday. They brought over a rocking chair and then I was able to hold him too. For as long as I wanted. If you can hold a baby too much, that will soon become Jack's problem. But of course I don't think you can.

In the afternoon they did the biopsy. It only took about 15 minutes, but that's still a long time to wait in the hall away from him. I also don't recommend a pasta lunch right before a biopsy on your kid. Like whenever they do something to him, it made me really sick to my stomach, but the pasta made it worse. I guess the biopsy went well since they said they got plenty of cells and he didn't have much bleeding from it. He slept the rest of the day from the morphine.

So now we wait. 3 long days to get results.

Matt and I hold out hope that he just had a sticky meconium plug and that all this is just to rule these other things out. That hopefully we will get back conclusive negative results so that we can get him home sometime soon. Our pediatrician (who has come to the hospital every day) says not to get too hung up on this HD diagnosis. Be glad not to if you say that.

Late last night Jack started to get upset. The morphine wore off and with his tummy and intestines now being totally empty he's very hungry. He's getting all his nutrition through his veins but doesn't know this, he just wants to eat. The nurse begged me to stay as long as possible to rock him because it calms him. I don't need any begging, although it did have me stay even a little longer, until while rocking him I kept nodding off and getting that head jerk. It's like when you're driving super late and want to get to your destination to rest so you try rolling down the window or singing really loud or rocking your body to stay awake but there's only so much you can do before you have to pull over and take a nap on the side of the road. I couldn't do many of these things while rocking him, and seeing him sleep peacefully calmed me and made me sleepy too. I couldn't last as long as long as I wanted and the nurse was sad to see me go. Jack was making his transition from the quietest, easiest baby to the biggest complainer on the block. When I was leaving she was working on getting him a little swing and radio to distract him from his hunger. And every step out of the NICU killed me, but I could barely hold my head up.

I slept a long time last night. My sister flew in from San Diego and she's taking Janie to school right now. I appreciate her help, but at the same time we wanted to keep things as normal as possible. Matt is not happy about her being here for just that reason. But, if she wasn't here right now I would not have time to type this and for the shower I'm about to take. I feel good knowing that Janie's life is appearing somewhat normal, and that Jack is having either Matt or I with him. It's our little system.

So speaking of which, I'll take this opportunity to shower now. I woke up drenched in milk because I had slept through one of the pumping sessions. I'd rather be more rested anyway so that I can stay later tonight. He sure is beautful. I know I say that a lot. It is really nice to rock him and hold him and just look at his sweet face.

Monday, April 11, 2005

Day 2 - Denial Runs Rampant

Today we drove to visit Jack in much better spirits. We even put the car seat back in the van to have it ready just in case. You know how it is. To not have it would mean that he would not be coming home. To have it means we're ready to leave at a moment's notice.

Shortly after we arrived, another baby in the NICU died just a few feet away. Even though they had the screens up and by courtesy you avoid looking over, you know what's going on. You can't help but hurt for the parents. The baby was a sick early premie, one of twins except the other twin isn't in the NICU and would be too little to be home. I couldn't help but think of Tertia.

On the opposite end of the spectrum, Jack was looking very good. After being under the billi lights all night his skin color looked much more normal. After being flushed with saline every 2 hours, his abdomen also looked normal. He looked so healthy and beautiful that I just wanted to take him home. Thank you for helping. Obviously he doesn't belong here. You've all done such a fantastic job and we really appreciate it. We'll be taking our baby and going home now.

Instead we were approached by the NICU social worker who wants to set up a meeting with us and gave us a discount for 30 days on parking. We don't need it for 30 days. We'll be leaving anytime now. And the neonatalogist told us that they wanted to put in a perk line (definately misspelled) because it will last a lot longer than some of the others he has in. Why go through the trouble on such a healthy baby? It's not like we'll be here much longer. And a nun came up to hug me and give me prayer options. Thank you but there's so many other babies in here that really need your help. Jack is just fine.

Denial ain't just a river in Egypt sweetie.

Eventually the surgeon came and talked to us. He would be doing a biopsy of Jack's rectum tomorrow to test for HD. Then it will take 3 days to get the results. And there is only a 50% chance of getting conclusive results either way. If we don't get clear results, then another biopsy but this one a bigger one. And another wait for results. And if we do get clear result of yes, then we have to do biopsies until we find out where the diseased intestine ends and the healthy part starts. And if we get a clear result of no, then we have to do other tests to find out what is wrong.

(Sorry for skipping around, but my mind is very scattered. And my spelling and grammar are worse.)

This morning when the neonatologist visited with us with his intern, he told us that there is another possible reason for the GI issues. "He could have cystic fibrosis. We'll do a DNA test for it, but it will take 2 to 4 weeks to get results." He said this like "We could have steak for dinner, but it would require heating up the grill." It's like he didn't even know the significance of his words. I just looked at him because I couldn't figure out his nonchalance. What do you say to that? Frankly, my stress account is already full, so I slipped this one into my back pocket to be opened later. Because we don't have any CF in our families, it is only a small possibility, but one that has to be considered if he doesn't have HD.

And here I thought that if he doesn't have HD we were going to be happy.

When we were talking to the surgeon about the biopsy and possibly following biopsies, Matt really went after him with questions. If I'm too compliant a patient, Matt can be too noncompliant. It's only because he knows they make mistakes and love to do surgery, and can miss out that these are real people they're working on. He wanted to know why we couldn't just bring him home, feed him, and monitor him to see what happens. The surgeon told him that we could not take the baby out of the hospital, and this really rubbed Matt the wrong way. This is still our baby. The surgeon had to stress to Matt that the baby was very sick yesterday, and his intestines were extremely swollen. He's still recovering and healing from the trauma. He's not taking any medication that would make him sleepy, yet he's slept ever since he was admitted, at that point 24+ hours straight. A healthy baby would have periods of being awake and now that his belly and intestines had been empty, he should be very hungry and upset but he's not. His X-rays were abnormal, and we have to remember that we already tried the test of bringing him home and we know how that turned out.

But what Matt was trying to say was not his words said but were feelings from his heart. What he wanted to hear was that everything was absolutely, positively necessary and not too invasive. He needed to hear that acting seemingly slowly may be very hard on us, but was in Jack's best interest and their goal was to get him home as soon as possible but safely. And he wanted to know what was wrong, and how bad, and what for sure was going to happen, and when he would be coming home. But there isn't an answer to these last questions and although Matt knew it, it was what he really wanted to know. And of course I did too.

So at this point we know nothing except that we have to ready ourselves for a much longer stay than we expected. This point all by itself is devastating to us because it is so hard to be away from him and everything about the NICU seems so serious and wrong for our baby. I can't imagine what will happen if he has HD or CF, because I don't want to. I have to hold out that he's healthy but needs time to heal, and they have to run their tests to rule everything out. Matt says he wants a "Do Over" where we go back to when we happily brought him home from the hospital. I want to bring him home too but be able to nurse him without him screaming. I look around here at the house and I can't help but think that we were so close to having it right. This is not how it's supposed to be. He is supposed to be home and healthy. He's supposed to be sleeping between us right now, waking to nurse and making his little cooing noises. Our daughter is supposed to be holding her baby brother instead of asking me when he's coming home. And I'm supposed to be feeding him instead of this constant pumping and freezing.

Nothing else matters right now. I called our maid service this morning to postpone the service, and they said they would be charging us $25 fee for not giving enough notice. I'm sorry, our baby was just admitted Sunday when you were closed so I'm not sure how I would give you more advance notice. I'll pay the fee, but you Merry Maids have just lost a customer.

Work and school don't matter. I have to remind myself to file an extension for our taxes because they will not be done on time. My husband cancelled the appointments for his car service and the cable company installing HDTV. We have to remind each other to continue to give our dog her antibiotics. And I find myself becoming totally intolerant of everything because all my tolerance is being used up by everything going on with Jack.

It's amazing that even when things are down, we keep on going. I sit by little Jack's side, rubbing his head, holding his foot, or just gazing at him, and it's starting to feel normal. Today I pointed out how Jack is making sucking motions with his lips.
"He's dreaming of breastfeeding. He's saying, 'Oh Boobie, I'm so sorry I turned you away. I miss you and I know now how wrong I was. You are so beautiful Boobie with such a lovely dark huge nipple, and I know now you were just trying to take of me. Come back to me Boobie. I swear I'll make it right this time. C'mon Boobie, let's try this again. If you come back, I'll never let you go. We could try any position you'd like and I will love you long time. Oh and before I forget, bring your twin sister, she's also mighty hot.'"

Sure, goofy, but I have to take any chance to laugh just a little if I can. Have to.


It's been a day from hell.

Last night I discovered that the only thing worse than a baby who is fighting and screaming at each feeding is a baby who doesn't want to fight at all. He was so sleepy that he refused to rouse for feedings. We would try to wake him, but he didn't want to wake. If he did, he would eat and then spit it back up.

At 3am I woke up Matt because I was exhausted and Jack finally had a wet diaper. Unfortunately it looked like there was blood in the diaper, which I've now learned is colored crystals which come from very concentrated urine. Jack refused to eat at all at 3. I fell asleep on the couch, waking each hour to check on him and having some very strange dreams about a meteor shower and thinking Jack would be okay because I saw an older boy in my dream.

At 5am, he ate only 1/2 oz and there was another spot of color in his otherwise bone dry diaper.

At 6am, it seemed like every dog in the neighborhood was barking. It woke me up. I walked out in the backyard with our non-barking dog to check out the commotion. Around the corner, in our completely fenced yard, came a big black dog. I thought I was dreaming again so I came back inside and told Matt. Since I was up, I pumped, and then since I was awake and the sun was starting to rise, I called our pediatrician. I told him about our baby who basically slept through the night, the 'blood' in his diaper, his refusal to eat. Our original plan had been to get Jack another blood test at the hospital and then meet the pediatrician at his office. The new plan was for us to go immediately to the emergency room at the Children's Hospital.

The rest of the day is pretty blurry, filled with long waits and scary times. I believed that we would be going there for a day of Jack sunning himself under the billi lights, but I was wrong.

First was the IV and blood tests. The IV is because he was obviously dehydrated. Unfortunately they blew his first vein so they had to do it twice. (Bastards.) The blood test was to check out his billi (which was 22, so now over the bad 20 level) and rule out many other things.

Second was the abdominal X-rays to rule out other problems. Before the results came back, our pediatrician came in (on a Sunday, in this San Fran area Children's hospital 45 minutes away from his office, I love him) and talked to us more about jaundice and the lights and the things we were ruling out. Then the results came back and he explained that Jack had an obstruction somewhere. They could see that his stomach and intestines were filled with stool and air to an extreme level. It was the inability to poop that was causing his jaundice to keep increasing, so the yellow skin and refusal to latch were symptoms and not the real problems. That's when they asked me how long his belly had been so big and hard and I shook my head and gasped for words since I had no idea. The surgeon came in and checked him out and many ideas were discussed as to different types of obstructions, including a twist in his intestine.

Third was the contrast X-rays where they first had him drink a dye while we watched it go down through the first part of his system. Then they did a barium enema where they put it up his little rectum and watch the dye up the second half. From that they could see that he had serious problems with his colon and lower half. It don't like it when the experienced radiologist talks about how he's never seen a colon like this before, etc etc. It was too full, probably due to either a thick meconium or due to Hirschsprung's disease. (Let's call this HD to save me from typing so much.) HD is a congenital defect which in my layman's understanding means that he would not have the right cells in his colon or lower intestine to contract correctly, so he would not be able to expel poop. I have much googling I'll have to do on this subject, but I've done none so far.

So then he was admitted to the NICU, which has to be one of the most scariest places on the planet for a parent, and probably the safest place for a baby. A team surrounded him and started inserting all sorts of wires and tubes. We were lucky in that his umbilical cord hadn't healed too much so they could put tubes in there. As the team was working on him, they took me off to get me to pump and show me their system for pumping and freezing. During this, they also told us that he would most likely have surgery that day to relieve his extended belly. There was a danger of his intestines bursting and causing bad infection and other problems. I rebelled against this, asking about medical resolutions and they assured me that there weren't any. In the meantime we had to wait for the surgeon who was on another case. Under the stress, I couldn't pump much, so my tiny bottles seemed so empty and the nurse questioned whether I was really done.

The impression I had gotten of the same surgeon in the ED was that he had no bedside manner and left me rather cold and untrusting. Maybe it was when he put the q-tip up my son's bottom to check for an opening, or maybe it was his thick accent and poor explanation of possibilities. My brother (a surgeon) has always told me that if you ask for a treatment option from a surgeon, expect it to be surgery. Surgeons like to do surgery. Up in the NICU, this surgeon told the nurses and neonatologist that they would be trying some non-surgical options first. My opinion of him had immediately changed. I finally felt like things might stop spinning.

So they then worked on relieving his bowels by a catheter and basically sucking some out, and some fluid washed in every two hours. The surgeon did the first part, even returning the solution to the nurse to be warmed so that he wouldn't have to put it in cold. His methods were slow and slothlike and I appreciated his attentiveness to my baby. Jack finally started sunbathing under those billi lights. He had a little morphine because he is a little fighter, but right now he's resting comfortably without it. I've been pumping every three hours and freezing it in the NICU freezer.

The surgeon describes Jack as having a lazy colon. It is either lazy because it finds the meconium too sticky and was unable to pass it causing an obstruction and the resulting traffic jam up his intestines and into his stomach. This would be the best case scenario. This would mean that the flushing out of his system would be his general cure. They find this idea to be highly unlikely, but my hopes are deeply tied to it.

The second option is the HD (see the definition above). In the morning they will do more X-rays and sometime probably tomorrow they will do a biopsy to find out if he has the necessary cells to expel poop or not. If not, then he will be diagnosed with HD. They will then do surgery to route the healthy part of his intestine to outside his body where he will get a colostomy bag. He will have this about 9 months until they do another surgery or two to remove the diseased intestine/colon and route the healthy intestine to his little butthole. Then he should have parts that work like the rest of us.

Jack is doing fine tonight, sleeping in the NICU under the billi lights with his cool eye protectors, and not so cool tubes including the flushing of his intestines. He likes to suck on the tube in his mouth/throat as if it's a pacifier. He's off the morphine and just sleeping.

Pazel is not doing so fine. I'm exhausted and drained. It's been a long several days and today was pretty bad. I don't care how many nurses or doctors tell me that my baby will be fine, I don't like to see him go through all these tests or to hear he'll have surgery. I'm sure there are many worser things, but this is my sweet baby and it's all I can do not to grab him and go running from the hospital. They don't know what it is to look at my baby being worked on, watching him cry, and feeling my milk let down with my body's own desire to ease his pain. And they have no idea how hard it was to pull myself away from his bedside tonight just an hour and a half ago, to put his carseat and diaper bag back in the van, and drive home without him. I've learned something today and that was that the only one who can truly understand every bit of my pain is my husband because he loves Jack just as deeply and intensely as I do. For all these 12 years of marriage, today when he held me and when he also broke down, our souls were only one with one wish and one cry. I know it sounds really sappy, please forgive me, but I swear it's true.

So I'm going to get up in just a few hours to shower and have breakfast with our daughter before heading back to the hospital. Janie has been told that her new baby brother is sick and in the hospital, but will be getting better and be home soon. I've got her covered by family for as long as it takes, but there really is no substitute for us and that's hard. Already this week because of the birth and hospital stay, then the nights up with the battling baby, she's told me that she misses me and wants me. Right now she's sleeping peacefully in our bed and I'm about to climb in next to her. I miss her just as much.

I have no idea what the next few days will hold. I continue to hope that he's just got a lazy little butt with super sticky meconium and not HD. Then we can get him home sooner, with nothing else invasive and all his parts working. I hope that some day I can tease him endlessly about all the attention his little colon got and tell all his friends about the number of things that went up his rear in one day. Right now, I'll settle for a few hours of sleep and no circling thoughts. You know, the kind that keep you up and make you see black dogs.

Saturday, April 09, 2005

Battle of the Breast

I'm sorry I've been absent. It's been a rough few days.

Jack is not eating and it has me upset. The first few days in the hospital, he just wanted to sleep. He didn't want to eat at all. The pediatrician wasn't worried and I wasn't too much either. I had the baby nurses all over me, grabbing my nipple, forcing it into his mouth, undressing him and wiping him with cold towels trying to get him irritated enough to suck. But he wouldn't latch, and if he did he would take only a suck or two then stop and thrust his tongue to come off. It became a challenge among the nurses to see who could get him to nurse. One wasn't even assigned but came in because she said she'd never failed... and she did. She couldn't believe it.

We came home Thursday afternoon and since then he's had only one real wet diaper. We've changed him more times which have been damp at best but not wet. No dirty ones. None. The hospital said he had two which were the black meconium, but I didn't see them. I have my doubts about them too, but what a strange thing that would be to fib about so I guess it must be true.

At night, he sleeps maybe 15 minutes at a time at most. The rest of the time he is crying. I have milk, with the swollen engorgement and now chapped nipples. I will be dripping milk while trying to get him to latch. He cries and fights and turns his head and is just relentless. Once I get him to finally latch, it's about 3 sucks then pushes off and screams. Repeat, repeat, repeat. I burp him frequently to take breaks between the screaming. He will calm while I hold him vertical, and maybe take a mini nap, but then he starts crying again. Back to the breast and the battle. Lather rinse repeat.

During the day, he sleeps, but of course he's always held during the day. I try to wake him to feed every two hours, which then starts the crying cycle again until he cries himself back asleep. He cries when he's hungry, cries during the feeding, and eventually cries himself into exhaustion.

And it's killing me. I feel like an immense failure. With Janie, everything was so easy. She rarely cried. If she did, I would just feed her, burp her or change her and she'd immediately stop. She took to breastfeeding really easily and would eat until she would fall asleep. He cries more in one night than she did her whole first year.

He's very jaundice, which is normal except that it usually goes away as the baby nurses and poos. Since he's not eating much and hasn't made any dirties, he's just getting worse. Both yesterday and today we had to take him back into the hospital for blood tests to check his bilirubin levels to see how jaundiced he is. Each day his level is worsening, getting closer to that magic 20 where it is supposed to be especially bad. Today it was 18.7. We've got to bring him back in tomorrow. I'm not sure what will happen at 20, hopefully just the billi lights, but I think the jaundice is more of a result of the feeding issue than the main issue.

I love my pediatrician. He called me today about the results and to see how last night was. He then called again tonight to see how he's doing. He asked me to bring him into his office tomorrow morning (Sunday) when he's done with rounds to weigh him and check him out. At his appointment yesterday he weighed 8lbs 5oz, down a whole pound. Usually a baby loses 5-10% in the first few days which is then easily gained back. Losing a whole pound is more than 10%, and I suspect he's still losing.

It's all very scary and frustrating. Of course my emotions are already on edge being post partum, but this feeding thing has got me. It is the mother who breastfeeds and so I am really feeling all this. I am also the only one up with him all night. What can Matt really do since he can't breastfeed him and that's mainly what our time is spent on? It's amazing because he will sleep and snore through all of the screaming, which bores down to my very soul. During the day Matt will hold him, but with our daughter his job was always diaper duty and since Jack's not wetting or soiling, he's kind of been out of a job.

This afternoon at the pediatrician's request, I pumped. I could only get about 2 1/2 oz which to me means that I'm starting to dry up. We battled with him with the bottle this evening. He does take it better than the breast, but it's not easy. He fights and cries and chokes and has to be constantly burped which he does loudly and has several for just a few swallows. It makes me feel better because you can see that he's eating, but makes me feel worse because I'm giving him a bottle instead of a breast. (And at one point while I was doing this the cooking show actually started talking about breastfeeding and how simple and natural and perfect it was while showing these babies contentedly latching and feeding and being held and lightly touched by their mothers and I wanted to throw my shoe at the TV.) The pediatrician recommended that I continue the bottle tonight, so I pumped again, got another 2 1/2 oz, which he's had 1 oz already, although it took awhile. I'm willing to try. It's hard to concede, to not give him the breast, but I'll do whatever it takes. Actually, it makes me think of Julie at A Little Pregnant although I can't make this seem witty in any way. Just hard, very very hard.

So wish me luck tonight as I need it. I need all reserves of my patience and to give up my desires for how things should be. They just aren't.

And I wouldn't give him up for the world. He really is beautiful. Sure, the sound of his crying is not music to my ears right now. The birds aren't singing to me in the morning and my general attitude is pretty down. But during the day, when he's peacefully sleeping, I look down at his sweet face and I can't get enough. He really is beautiful.

I'll have to post his birth story later. Forgive me if my posting are sporadic. I am either battling with him over the feedings or I'm just rocking with him and enjoying a quiet moment with him. I know that as long as he is eating something he will be okay. There are worser things, this is just what we've got to face today. I wish it were different and I remind myself that it will get better. It will. I don't see any college kids who cry and choke on their pizza.

Thank you all for the congratulations. I really, really, really appreciate your kind words right now. It really has helped, especially because I've felt so sad and horrible today.

Friday, April 08, 2005

Jack Henry

I only have a minute. I'll have to send you the long version tomorrow.

I'm the proud mother of Jack Henry, born Monday 4/4/05 at 1:05 pm from a planned c-section birth. At birth he weighed 9lbs 5oz and was (probably still is) 21 3/4 inches long. He's a big baby comparatively speaking, but to me he looks just tiny. He also looks just like Janie. Matter of fact, at certain times I'm certain I'm holding Janie. He's got the faintest amount of brown hair, and the darkest blue eyes that will probably change brown. His eyebrows are nearly invisible. His skin is flawless, although he's pretty yellow (jaundice).

Monday, April 04, 2005

Is it the 4th already?

It stormed tonight. Thunder, lightning, and a sudden down pour. It seemed fitting. Let the skies open up and welcome this baby. I've always loved a good storm.

He keeps kicking me and moving around. He's even had the hiccups twice tonight. I think he's telling me to stop worrying so much. He's alive and he's real and tomorrow is his birthday. Can you believe it? Because I am having a hard time.

Obviously I can't sleep. Must I say that there's just too much on my mind? I've having a baby tomorrow. My second and my last. Yep, my tubes will be tied and no more babies for me. Tonight is my last night of sleeping pregnant, and it's a little sad. I'm tired of being huge, but I'll miss his movements. Sure, sometimes he plants his feet on one side of my pelvis and tries to push his head out the top of my belly, but I understand he's doing it just because he's cramped and trying to stretch out his little home. I could imagine myself doing the same.

I wish I felt better in terms of my cough and congestion. At this point, it's been like this for 4 months, so delaying this birth won't change anything. The pulmonologist and my GP think birth will make me feel better. Better is better.

Matt returned home with no TV, pretty much as I had suspected. He was frustrated and promised he would get one while I'm in the hospital, should I let him escape for a few hours. It was like I said, he set his expectations so high that nothing was good enough. It wasn't this or it wasn't that. He says that he is having a big final tomorrow and is not prepared. I think running around looking at TVs was a good distraction from all this. I sent him to bed early because I want him to be well rested to take good care of me. Also, he gets grumpy if he doesn't sleep. It's worse if he doesn't eat. He's a simple guy really. Really easy to read and figure out.

A boy. Can I say that I still don't believe it? I'm going to have to see his goodies to believe it. Actually, first I'll have to hear him cry, then count his fingers, then check out his goods. And then hopefully I can gaze into his eyes and a name will come. Jack Henry or Henry Michael or .... Henry is a sweet name, I think it would be so cute for a little boy. Henry would be a good name if he was soulful, but Jack would be a good name if he was more outgoing. I'm going to have to see him, to look in his eyes and see what his name is.

Thank you all for your words of luck and hope. It means a lot to me. I'm afraid that now that I'm about to have one of the most exciting times of my life I won't be able to immediately share it with you. Tune in later this week and I'll tell you the real story.

Speaking of luck, today I got about 9 phone calls from family. How are you feeling? Are you excited? Do you have a name yet? Everyone was suprised when I went out shopping. How can you go out? Ummm, I'm the same as yesterday. I'm not in labor. And it takes my mind off of things. (I bought presents for Jamie, thank you for the suggestions.) It's a strange position to be in, to know that tomorrow is the day for sure. It's not a due date which is always just a shot in the dark and I don't need any signs. It just is. So very modern.

So I will wish you all a good night. Think of me at 12:15 pacific time. I'm sure I'll be crying but it will be in the best way possible. When Janie was born, Matt even shed a tear or two. I'm looking forward to that again too.

Sunday, April 03, 2005

I'm having a baby tomorrow

I'm having a baby tomorrow.

I don't believe it. I don't care how big I am, how much he moves around, or my name on the surgery schedule. I'll believe it when I see it. Just last night we put the car seat in the van and I packed my bag for the hospital. And we still don't have a name for this poor kid.

I can't really think about what it will be like when we finally have him. It's too emotional, too raw. Instead I spend my time concentrating on the details. Do I have the essentials I need to bring him home? Are there meals set up for Janie? How is my work ever going to survive without me? Actually I don't think about that last one too much.

Matt has been wonderful. He's nervous. Last night I asked him what he would do if I died on the table and he refused to answer. I made him promise that he won't move the kids to Nowhere Nevada by his parents. It's not that I don' t like his parents, but the mindset there is so incredibly different that I would have to haunt him. I told him that if I died he should move back to Arizona where he can buy a nice house and my best friend would help him in raising the kids. In truth, I can't die because I need to raise these kids. No one else would be good enough. Not that I'm Mary Poppins, but I like my own brand of moderation.

Right now he's runnning around trying to buy a TV for our bedroom for me to watch while I recover. He said that he feels like it's Christmas eve and he's got to find the doll all the stores are out of before they close and it's too late. I'm not too particular about the TV and would be happy with something inexpensive since there's nothing worth watching on anyways, but he wants it to be special. He's trying to find some HDTV super spindicular plasma flat thing to go on the wall in our bedroom. He's set the bar so high that he's created enormous pressure on himself. I only worry about the price tag and that he ends up buying nothing because there isn't one that fits his criteria.

I had a strange dream last night. I don't remember most of it, but the end when I was playing with a little girl with down's syndrome who was my daughter's age. Her blond hair was cut in a chin length bob. I know it must be my best friend's baby daughter, but I'm not sure why I was dreaming of her. Was it some random synopse or was my brain trying to tell me that all would be okay? Even when it seems like something bad has happened, it ends up not to be the end of the world. Maybe. But I don't think the mind can truly prepare the heart for anything so important.

Janie is loving her time with my mother right now. They stayed up late talking and Janie told her that while I'm at the hospital they could eat ice cream for breakfast and cake for lunch (but macaroni and cheese is good for dinner). They're playing McDonald's in her playhouse in the backyard. My mother told me that she tried talking to Janie about the new baby last night but Janie didn't want to talk about it. Janie's very excited talking to me about it, but I don't think she wants to share her Grandma with the baby.

There's much I've got to do today. I'll try to write more tonight or tomorrow morning. There's so much going through my mind.

Friday, April 01, 2005

More Janie Talk

I'm sorry about the title yesterday. I didn't mean to scare anyone. I didn't even think about it.

I love your ideas of getting her a present from the baby. I'm going to go shopping either today or tomorrow and take care of that. It's now top of my list. I also love the hostess idea.

My mother is coming tomorrow to stay a week and help with Janie. Janie loves her because she comes just to play with her. She doesn't have to deal with laundry, cooking dinner, work, studying, cleaning house, or any of that mundane stuff. She also brings presents. Matt is planning on bringing my mother's car in to get serviced while she's here as a thank you gift. It sounds strange, but if you knew my mother you'd know that she never gets her car serviced and it probably hasn't had the oil changed in a year.

This week at school has been hard on Janie. Most of the kids are on spring break, including her beloved Armand and her other close friends. The first day she told me that she played with the new kid because the other kids wouldn't play with her. The next two days she told me that she played on her own because the new kid was being mean and the other kids wouldn't play with her. Last night she told me that she made friends with Amanda and Lea. She said that she wanted to go to school everyday even Saturday and Sunday because she wanted to play with them. She was so excited about going to school today, and brought stickers to share with them.

I think I've shared before that Janie is kind of a shy girl. She's very talkative and friendly when she knows you, but if she doesn't she probably won't say a word. When she makes friends, they're very tight, but she's not very good on making new friends.

Every day she would tell me that she didn't have someone to play with or that kids don't want to play with her I get upset. I don't show it to her, but inside I'm hurting for her. We try role playing on making introductions or inviting other kids to play or asking other kids to play, but she tells me that she's afraid they'll say no. Ouch.

So mix a rough week at school and the new baby coming on Monday and I have a lot of concerns for her. She's not had any hard feelings towards the baby (yet), but he's not that real yet either. I tell her that he likes to hear her voice and that he can't wait to meet her. I tell her that they will be brother and sister forever. I tell her that she will always be my girl and my first and my baby no matter how old she is. And I try to spend more time hugging her, talking with her, and just hanging out with her. But I know I can't completely protect her from how she might feel.

It's a luxury to have this problem, a second baby coming. One of the reasons Janie has been such a star is because she took so long to be conceived (3 years and 3rd IUI), and because we assumed that she could very well be our only child. She was the first grandchild in 12 years on both sides of the family. I don't know if there is a child more revered and spoiled than that of an infertile couple.

I'm going to take your advice and work on putting together some special things for Janie from the baby and special things she can do. She is still my baby. I can't imagine loving another child as much as I love her. It seems impossible. I've heard it can happen. I'm looking forward to finding out.


p.s. I had my last class last night for a few weeks. Suddenly everyone wants to talk to me. Are you excited? Are you nervous? How are you feeling? I'm the reluctant celebrity. Especially when I have to pee.