Tuesday, November 22, 2011

Cleared!! And better sleep now!

We heard last Thursday that they boys do not have VLCAD! They have a gene that looks "funny" but they're carriers at worst. We have them sleeping in my office with the monitor since then. We're finding they generally go down in the 6:00 hour, wake in the 10:00 hour, again in the 2:00 hour and again in the 4:00 hour. This is not convenient because Andrew has been waking up at 5:00 sharp for the last couple of weeks since the Daylight Savings change.

Last night we tried something new: Bath Time! The twins were bathed in the 7:00 hour before they went to sleep, but didn't really shut down until about 8:30... and slept until 1:00!!! They went back down and woke up again at 4:00 ish. This is very good news. Cutting out one of the feedings is a REALLY big deal. This would have worked out well for us but that Andrew got a cold last night (of course, right?) and woke up crying at 11:30 and again at 2:30. Poor little guy... hope he gets better soon, but in all likelyhood this bug will cycle all the way through the family...

Saturday, November 5, 2011

Swaddling

So... Apparently the boys do like to be swaddled! We swaddled them in the hospital and for the first week or so but then came to the conclusion that they didnt like it. Now here we are at 7/4 weeks old ( actual age/due date age) and they've been sleeping like crap. We're kind if at our wits end with their sleep, tried swaddling again and it seems to wor well! Granted, it's just the first nap we've tried but the results are strong. Looking forward to tonight to see his it goes!

We just started really reading up on Wiessbluth this week. We probably should have done this sooner so could have prepared for this time a little better. At least we're starting the drowsy but awake thing early. I think that if we knew more about sleep training with Andrew he would have had his skills earlier. He didn't sleep through the night considtantly until 16 months and wasn't putting himself down until 3 months after that. We simply can't do that with the twins. There aren't enough hours in the day!

Once we reach 9/6 weeks the sleep schedules should start to normalize. Greatly looking forward to that!

Saturday, October 29, 2011

Metabolic Disorders

The twins were flagged in the California Newborn Screening Program as testing positive for VLCAD enzyme deficiency. This resulted in having to get their blood drawn (not heal prick, a full on blood draw) when they were only a week old. W were told that a few tests would need to be run at various facilities and that we probably would not hear back for 3-4 weeks.

As it turns out two samples should have been drawn and each should have gone to separate facilities. 4 weeks later we hear that the key sample for gene sequencing never made it to Cinncinatti Children's hospital. The was some goof in the paper work and Quest Diagnostics didn't do anything with the blank request form they were given. The form should have been prepared by the UCSF/Stanford Genetics team that requeted the test, or inquired about by the pediatrician's office that gave the forms to bring to the draw, or questioned by the lab when they received the blank form.

I'm not sure how much the parents of week-old newborns can be held accountable to make sure that these forms are completed in whatever wacky medical jargon that needs to be present, but as I'm experiencing, we should never trust anyone to manage the well-being of our children. In the end it falls on us, and I would argue specifically the fathers, to be aware of what the problems are and to be checking in with the various "professionals" along the way. I say it all the time: "the only thing I really learned in grad school is that no body really knows anything". I'm considered to be an expert in something and I surely don't know much about it! Why should I expect a higher level of expertise from someone else.

So now I've contacted the head of the genetics department personally. I go the name of the genetics counselor that works on cases like ours. I got to hear the results from the tests that were run straight from the people that work with these kinds of tests all the time. I requested new forms be set completed directly to me. I requested that in addition to the requesting doctor at UCSF, our pediatricians name and my name be added to the forms so that the testing facilities will be legally allowed to speak with each of us directly.

And I did all of this in relatively short order. You could ask me why this wasn't done in the first place or who's to blame, but in the end it doesn't matter. As a father it falls on me to pick up the pieces that someone else dropped and carry them to where ever they need to go in order that my children get whatever it is they need. I don't have time to figure out who's to blame. Even stopping to find out who's responsible, even if i wanted to get someone fired, would represent a learning opportunity for them.

If you are supposed to help me support my family and you fail, I'm not going to stop to pick you up and help you learn and grow. You lose. You have been left behind. And you probably won't hear about it.

Kel is planning on writing John Muir with some suggestions about how they can better handle patients who test positive for various conditions within the newborn screening program. I think that's a great idea. I will help her write it. After I know my boys are well and taken care of.

Tuesday, October 25, 2011

License to be Grumpy, Apparently

Last weekend, particularly the time between 7:00 October 22nd and 7:00am October 23rd, marked a new low for Kel, the boys, and me. Our sleep schedule has been the following: ideally Andrew is in bed and alone by 7. Kel sleeps from 7 to 10 (3 hours), then she comes and relieves me so I can sleep from 10 to 4 (6 hours) and then I'm on again so she can get 3 more hours (4-7) before I have to get ready for work. Lately it's been more like 2.5/5/2.5 because Andrew's schedule gets shifted and the transitions between our shifts take a little longer than planned. You have to adapt, right?

I had the great last weekend to try a technique she read about on one of her groups: Mom and Dad wake up together, crank out the routine together in ~half an hour, and everyone goes back to sleep for another 3 hours. Sounds great right? Well, apparently these other twins are older than our 5-week-olds. NO ONE got any sleep at all. I must have forgotten about how noisy these guys are sleeping at night. Always grunting and squirming and talking. They say that sleeping routines emerge around 6 weeks so I guess I should have known better. Also, and we didn't know this until the morning, Wes had a giant (for him) booger in his nose that was making him wheezy all night.

Kel and got... maybe... between us... 3 hours. A new low. Now I know why we have it set up the other way.

Sunday was spent in pajamas watching TV and hanging out with our boys. We got nothing done. No laundry, no dishes. We barely got showers. It's funny, you can tell when Robin's been here because the laundry piles are small, if existent at all. You can tell when Dad's been here because bottles are clean and drying on the racks. We tried our best to recover Sunday but we could only make so much progression. We knew Robin was coming back Monday and we decided to not ask for help and try to get through it ourselves. I think, even with the benefit of hindsight, that this was the right call and gave us some confidence and seasoning after October 22nd, 2011: The Night From Hell, hereafter referred to as TNFH, or Tonfweh Night (inserting O and W for pronunciation assistance for obvious reasons).

This night represented the New Low for us as parents, where we lost all patience with our little boys and had no sympathy for their pains and uncomfortability at all. No abuse went down or anything like that, but we picked them up like so many objects and told them probably a couple of times "will you just shut up already???". Certainly nothing to write home about, but also certainly not the way we want to raise them and model love for them. I think every parent has to have that New Low night for each of their kids when they're forced to acknowledge that their lives are not their own anymore and that these helpless little creatures get a bye for everything they do that pisses you off.

We swore on that night that we would take the high ground, and keep ourselves in check about taking the high ground from that day on. And what that really means is for the rest of their infancy, when its really hard to raise them. I'm sure we will need to have a similar kind of Summit Meeting when they're older and present us with new challenges, but you really gotta take this thing a week at a time. Two years is a very long term promise for us as far as we're concerned.

This morning I had to admit that these guys are pretty cute. It's amazing what a good night's rest and a few games of Starcraft II will do for my mood. On Tuesdays and Thursdays Dad has been coming over at 4 to relieve me of that early morning shift. This has obviously been awesome. He comes and helps Kel with the boys a few mornings a week and decided that the best way to help me was to cover my shift. Last night I got Andrew in bed ~8:30, played some SCII for about a hour (I won my first game and lost the following 3... I've been falling down the ladder like Humpty Dumpty lately... oi), was in bed at 9:30 and slept until around 3. Then I got up for about an hour and a half for my shift. Then slept till 8!

Monday, October 24, 2011

License to be Honest

Raising newborn twins sucks. Period. Anyone who tell you that you should enjoy it has never raised newborn twins before.

It sucks. And it's OK to admit that it sucks. I love those little guys with all my heart, but this age SUCKS! I used to think I enjoyed newborns. There's really nothing to enjoy. All they do is grunt and cry. I don't count eating, sleeping, excreting or any other natural bodily cycle because when someone asked me what I did yesterday I don't talk about eating, restrooming, or sleeping unless there was something out of the ordinary cycle regarding those things... and I thought the other person needed to know about it.

So newborns don't DO anything. People say "Oh, but their so cute!" Nonsense. Half the time you see them they're grunting or crying, or they have skin flakes everywhere or spitup all over them. That's not cute. And you don't get a strong impression that they are particularly grateful for your efforts and lack of sleep.

I think it's very important when raising newborn twins to distiguish between these new people in your life and the situation they have put you in. I love these guys. Even though the don't do anything and they are NO fun at all right now, they are still my boys and I love them. This situation: their age mixed with Andrew's age; SUCKS. And I feel like if I deny myself the honesty that I hate this really hard period of my life I'm going to have some kind of emotional breakdown. That's not gonna help anyone.

I have no idea who's gonna read this, but I hope you take it for what it's worth...

A Planned C-Section

Corporate extension deadline. September 15th and the days leading up to it seem to get more and more hectic. 

The twins were due October 8th, but as twins take up substantially more room than singlets, the Doctor didn't want them to go past 38 weeks. September 22 at the latest.

Note: I'm playing the pronoun game here because we had no idea what their names were going to be. Before we knew it was twins the name was going to be Owen for a boy and Audrey for a girl. When we found out it was twins we decided we would keep those names if they were one of each. We came up with Audrey Jane and Grace Kelleen if they were girls. We didn't have names for 2 boys but we were pretty sure it wasn't 2 boys. Kel had a very different read on them than she did on Andrew (and she really wanted to experience the Mother-Daughter relationship from the other side).

We decided early on for some reason that Owen didn't work well with other boy names so we scrapped it and started looking for others. We considered (A/B) Gregory/Nathaniel (that was the front runner for the longest time...), Colin/Wesley, and a myriad of others. People would ask us what the names were and we would say it was a secret. It was secret for 2 reasons: 1 we didn't want to hear what people thought of the names we were considering (brain-mouth filters are unable to strain thoughts on names of in-utero babies for some reason) and 2 (and most importantly) WE HAD NO IDEA WHAT THEY WERE GOING TO BE!!!

Kel went in to what we would later figure out was labor on September 11th. Contractions would only really hit when she was sitting, so logically, she avoided sitting. When she went in to see the doctor on Wednesday the 14th, the doctor told her that she would see her bright and early the next morning, because these babies are on their way out! Kel calls me at 4:00pm on the 14th. Great. Have fun without me, office! GL!

We told our neighbors, the Carls, what was happening and asked them if it would be OK for us to call them in the wee hours of the morning to what Andrew from the time we left for the hospital until the time Dad was over if her water broke that night. They were happy to help and as it turned out, we needed it!

The C-Section was scheduled for 9:00am that morning. Kel's water broke at 3:30. I called my Dad. "Lights, camera, action! We on! Get over here!" The same call to the Carls. And we're off!

The trip to the hospital was uneventful. I think I only ran one light. Carefully, of course. Kel stopped me from running the second. We got the hospital and things were pretty standard. We thought they would rush us into the OR a little faster; it was about an hour and a half before she got in. Apparently things would have been faster if she was laboring more intensely.

When the anesthesiologist came in he started giving us his little schpiel, after which I told him that I have a brief history of passing out during these things, but that I thought I would be OK this time. I feel good! He looked at me very suspiciously: Mr. Berg, you will be sitting in my chair.

The anesthesiologist we had with Andrew was an older gentleman with a weird sense of humor; not the kind you appreciate during a stressful situation. This guy was a lot more chill. He was a few years from middle-aged with long curly dark hair and, as Kel would later describe, very soothing eyes. She found his eyes to be very helpful in this situation.

I will post about Andrew's delivery soon if I haven't already. This experience was a stark contrast. Knowing what to expect and having recently rested made all the difference in the world. There was music playing; U2 and Coldplay if memory serves. When I came in and sat down next to Kel I told her "They fixed the gas leak!". The anesthesiologist kept us up to speed on what was going on.

When the time came I took a chance and leaned over to see Owen coming out. By the time I saw he was already out but I got to see Wes come out. My curious eyes got the better of me. The ring holding Kel open was about 8 inches in diameter; pretty impressive given the tiny scar she has from Andrew. The anesthesiologist touched my shoulder "you OK?" Yeah, fine!

Then I got brave again and told Kel I was going to go see them. I walked over and touched them in their bassinets, all gooey and everything. We put them in one bassinet so they could be together, sure enough they held hands! I got to cut their chords, and hang out for their weighing, all that stuff I was unable to do with Andrew. Then I looked back at Kel... from the other side of the screen! I watched her get stitched back together; stitch the stomach muscles and close the skin layer. The anesthesiologist saw me and said "Hey, Kyle! Yo! Eyes at me, huh? You OK?" Yeah! I'm great! That's really interesting... and went back to the boys.

There was no rush to get them to the nursery as there seemed to be with Andrew. They were still around after Kel was wheeling into the recovery entryway of the room. We hung out just the 4 of us in that recovery area for quite a while.

Kel's parents left late the night before to come up in time to be around when the boys were born. We called them on the way to the hospital to let them know what was going on. They still arrived in time to be there when they were born. Pretty cool.

Friday, October 7, 2011

The Story of Andrew's Birth

The following is something I wrote in the few days after Andrew was born. Be advised, there is adult language below. I try to keep posts here G-rated and family driendly, but as you can imagine there were very strong feelings and I feel that the language is warrented. I sent this too a few people who asked how it really went for me, but I didn't offer it freely and publicly until now.

I would like to post about my experience with the twins delivery, but I wanted Andrew's to be posted first. I hope you like it;

I called it First Breathes:

Andrew Marcus Berg was due on December 12, 2009. Starting at the beginning of the second trimester he started consistently measuring about 2 weeks more developed than usual. I hoped this would indicate (and somehow managed to convince a number of people) that he would be coming early. During the 3rd trimester he was getting so big that we got to have 2 extra ultrasounds that we wouldn’t have had so that we could track his size and better prepare for his birth. Dr. Delgado said that she didn’t want him to go past his due date. Kel didn't have gestational diabetes, Rew was just a big guy!

By the time of his last pre-natal appointment on December 8th he felt way overdue. We scheduled an induction for Tuesday the 15th, the earliest possible date at that time. When you’re scheduled for an induction you usually end up going in the night before. The first set of medicine is usually administered then so that it can get things going while the expectant mother sleeps. The second set would be administered in the morning of the induction and would set the contractions off for the rest of the day.

We were supposed to go in the night of December 14th. And by “supposed to go in” I mean we had to call in and see if there is room. Sometimes L&D (the Labor and Delivery department) is full. It was pretty full on December 14th. We were told to call back later that evening. When we did they said to call again early the next morning. We were eventually cleared to come in at 9 am Tuesday morning, knowing that the timing of our late admission was probably going to make for a very long day.

The meds kicked in very well and Kel progressed impressively. When they broke her water they saw it was a little tainted. Now we’re on meconium watch. She ordered the epidural as soon as the doctors would let her and it came about an hour later (probably about a half hour after she was REALLY ready for it). She probably went through 4 hours of contractions, about 3 of which required some pretty focused breathing. She says that she felt that she could have gone through without it, but why not use what’s available?

After the epidural she was able to get some good rest in. We watched So You Think You Can Dance on the overhead TV as her contractions raged on the monitor. This is what we prepared for and we were getting pretty psyched up! We had practiced with ice cubes to simulate discomfort for her and figure out how best for me to support her. We discovered that of all of the infinite things a birth partner can do, what worked best for Kel was for me to hold her hand and be still and quite while the contractions hit. After they tapered off she would open her eyes again and I was cleared to talk to her and encourage her. She had prepared to push with all she had, reminding herself of other endurance events that she had done. Just like going to the gym. Confidence is everything, right? I knew about how messy the process can be and had prepared myself for that. If you can handle violent video games and watch gory scary movies, you should be able to handle the birth of your own son, right? Confidence. I was going to get to have my hand crushed into oblivion as she gave the final push and brought our son into the world. I was going to get to…
*choke* (give me a minute…)
Phew.

I was going to get to snuggle him all brand-new and gooey the way Dad got to snuggle me. During our first couple of minutes as a new family we would all get to cuddle and share in the ecstasy of the moment.

But that’s not what happened. The easy ride stopped as soon as we turned off the dance show. Later on his vitals started acting up. They would slow down if she was on her back or one side, and then that side may switch in an hour. When it came time to push she was more on her side than her back. Dr. Delgado told Kel that she would not get a lot of opportunity to push the way his vitals were acting, so her pushes really had to count. That was all Kel needed! She was pushing like a champ! I think the rest she had from the epidural really helped with the energy she had here. But when she would push his vitals would fall right to the floor. I got to hold one of her feet with one hand and help curl around the baby with my other hand on her back.

And she gave those pushes every ounce of her being. Only the first set had some technique corrects and the rest were flawless. She knew this was going to be a big boy and she said “bring it on!” The doctor kept saying how they were perfect pushes and to keep doing exactly what she was doing. During this phase her contractions got to 2.5 long and back-to-back. Contractions are usually 90 seconds and father apart.

But his vitals couldn’t keep up. We had to wait what seemed like an eternity for the timing of the contractions to coincide with his vitals being strong enough to stress with a push. And each push seemed to stress him out more. After about just under an hour of pushing Dr. Delgado called it. She said Kel could keep pushing and we would probably be no better off in another couple of hours and everyone would just be more stressed. Plus the fact that his vitals dropped probably meant that his cord was in the way somewhere. And he was still at station 1 when he should be dropped more to station 2. Could maybe push him out, but not the best idea. Time for a cesarean section.

Now when we got to the hospital that morning I had passed the doctor in the staircase. She was doing a cesarean. Later in the afternoon when she came in to check it was after a 4:30 cesarean. Is this woman c-section happy? Is she getting some kind of surgical commission? What is really going on here?

But hey, if that’s what needs to be done we hired you because we want and need to trust your judgment. Kel says “let’s do it”. A c-section it is.

Not what I planned for.

So they wheel her off and tell me to put on this-here gown. Done. I’ll get the camera ready too. Then I go out to the lobby and tell our parents that his vitals are tanking at every push so we need to do the c-section. I’ll let you know when there’s more to know. “When do I get to hold my Grandson?” Right after I do.
After a smile I head to the labor room. Then a nurse comes in.

“Mr. Berg you look pretty ready with your gown already on. You may want to get your camera ready.” You mean this camera right here with the battery charged and ready to go?
“Yes, Mr. Berg! You’re a very prepared man!” I guess…
“Well you have some time before she’s prepped. You may want to pack up your stuff for transfer to your room.” Done. I packed the rest of the stuff in 3.5 seconds flat and continued my vigilant pacing. I did not practice this particular form of pacing. Finally someone came in to get me and led me about 15 yards into the operating room. I don’t know if you’ve ever been in an operating room, but nothing could be different from the labor room. The labor room had full windows and blinds, hardwood floors and cabinets, soft adjustable lighting, walking (pacing) space. Operating rooms are bright and white and reek of sterility. That latex/Nitrile gloves smell; do you know what I mean? Rubber and disposable everything. I did not practice going in operating rooms and smelling rubber disposable everything.

And is that a gas leak? What’s that taste?

And there at the center of everything is my everything. My beautiful Kelly all sprawled out with her arms out on the sides and a blue curtain hiding everything below her neck. “Hi, Babe” she says in a little bit of a sedated, drunken stupor. “We’re gonna see our little boy soon!” Yes we are… yes we are. “I can’t really talk now, my speech is kinda slurry.” That’s OK. You don’t have to do anything.

So I hold her hand and tell her she’s doing great. As the operation continues she keeps me up to speed on what she’s feeling. A little pressure here and there. It doesn’t hurt but it’s uncomfortable. “Actually, Dr., that does hurt.” He adjusts her meds. Now she’s feeling noxious. “OK Dad, now you have a job. You hold this crescent pan next to her face”. You sure? I didn’t practice holding a crescent pan in a bright disposable room to the face of my anesthetized everything. And seriously, that taste! Anyone?

I didn’t think a c-section would be so… violent isn’t the word. Aggressive is a better word. She would get pulled from side to side and down every once in a while, and then there would be a delayed look on her face like “Hmm. Interesting…” Didn’t practice watching that either.

Actually, now that I think about it I never could handle watching surgeries on TV. My friend Jeff used to tease me about my reaction to a rinoplasti discussion we had. “Tap-tap, Kyle. Tap-tap.” And I’d squirm. He got a big kick out of that.

“You can look around the curtain if you want to” she tells me. I peak around and I see him. He had just come out. Didn’t see him come out but I did see them take him from her to the table. Just a quick flash. His skin was dark. Huh. And he’s freakin’ huge!
“OK Kelly, how are you feeling? Can I adjust your meds at all? Are you feeling nauxious”
“Yeah, but it’s getting better.”
Actually, Doc, I’m feeling a little dizzy.
“Yeah, Dad?”
OK. Seriously. That taste. That’s gotta be a gas leak of some kind. Someone call PG&E. They should put one of those new meters on this place like they did at our house. Then they could just check for leaks like this remotely. So much can be done remotely now. Wow, Rew won’t know a world were you can’t remotely…
And my mind just wandered like this. Then these voices come in out of the background “Lay down, just lay down.” Why would you lay down in the surgery room if you’re not the one being operated on? That’s just silly. Silly Willy. I get to be silly with Rew soon…

I had passed out. I guess I can add breathing to the list of things I didn’t practice. I come to with about 3 people easing me to the ground.
“Hey! There he is! How are you doing, Dad?” Thumbs up. Nice catch Doc.
“I probably wouldn’t have got you if you hadn’t dropped that dizzy line. Did you have anything for dinner?”
Of course I had dinner! I ate at 4. I ate early because I didn’t want to miss anything.
“Kyle, it’s midnight. We’re gonna get you some juice.” Guess I’ve had some other things on my mind besides food. I tasted something funny earlier. That was a sign of fainting? Awesome.
So I lay there on the floor and I hear a little gurgle. Then a while later I hear him cry and the staff cheer. Then I sit up against the cabinets and reassure Kel that everything is OK now.
They bring him around and show him to Kel. She’s too weak to hold him but I get a couple of pictures of the 2 of them. Then the anesthesiologist takes the camera and gets a couple of shots from over 4 feet off the ground and a couple more. Then I get to hold him for a little while seated there on the operating room floor. Wow. I don’t recognize you. What does that mean?
“OK, we’re going to take him to the nursery now. Dad, you can come over whenever you’re feeling ready.”

I probably spent another half an hour going from floor to chair, back to floor, back to chair, drinking juice, drinking water. “Mom’s doing fine. I’m not worried about her. I’m worried about Dad!” I’ve got to get out of this room. Are you OK, Babe? I can’t breathe in here. “Sure. I’m fine. I’ll see you and Little Mister soon.” They bring me a wheel chair and take me back to the labor room.

“Try and take a little nap.” Nap my ass. I have a little son to see. Gotta get my head back. Gotta breathe. Gotta eat. Gotta drink. Ok. Sit up now. Good. Stand up now. Good. Water on the face is one of my favorite feelings and feels really good now. Alright walking around! There’s that taste again. Fuck! Sit down again. Breathe. Water. Breathe. Facebook! Something to do. Type, type, type. Then my parents and Robin. Text, text. They come in right as I push send. Good. They’re probably freaking out right now. I set them at ease. Robin goes out to see Kelly.

In the end he was born December 15th, 2009. He weighed 9 lbs 3 oz and was 21 inches long. He has dirty blonde hair and blue eyes with brown details near the cornea. His cord was wrapped around his neck. He had a massive amount of meconium in utero with him (hence the dark skin) and in his airway. They had to work hard to suck all of the gunk out of him. He had a pretty rough go there at the start the first hour. Now I recognize the chin and the cheekbones. He looks remarkably like my little brother when he was little- little. Those are my eyes with some of Kel’s details. Dirty blonde hair! Well, well!

I’m a pretty open-minded guy. I hear a lot of new-age birth techniques that sound pretty cool and some that sound really weird. I hear a lot of western/modern-medicine bashing. You can talk as much shit as you want about how cold hospitals are. You can say that your techniques would probably have conquered the same obstacles my little boy had to. You can say whatever you want, but I believe that if the doctor hadn’t make the call she made when she made it I would have lost at least one member of my family.

Now my boy is sleeping and feeding and crying and pooping and all of the wonderful and glorious things that babies do. And I couldn’t be happier.