Sunday, August 31, 2008

A Second Birthday

Bringing Isaac back from the hospital is like a second birthday. It is wonderful, wonderful, wonderful, to have him home again! I like hearing his little chirps and grunts in the night and it is much nicer to wake up to nurse him rather than go to a pump. We check his blood glucose levels every three hours and he receives a minute dose of Lantus twice daily. His levels were great through the night, but climbed sharply this morning, so the endocrinologist advised giving him .75 units rather than his usual .5 units this morning. (You have to have eagle eyes to draw up such a tiny amount...) Checked again 30 minutes ago and his sugars are back to a respectable level.

Isaac also gets NaCl 4 times daily (mixed with milk to get it down) in order replenish that which he loses in urine. I've also found that I still need to pump some, despite Isaac being a great eater, so it works out. Our freezer has a good sized bin overflowing with milk containers that I pumped while he was in the hospital. I'm pleased that I was able to keep up with him and then some.

He's now about 7 and a half pounds. Between Thursday and Friday night he put on 205 grams. The nurses couldn't believe it, so he was weighed 3 times. I think this child would have been a good 8+ pounder at birth if it weren't for the diabetes.

While it is great to have him back, whatever I was drawing energy from these past two weeks seems to have evaporated. I am tired. Happy, but tired. The thought of getting behind the wheel of a car feels a bit too daunting right now. I don't even want to get dressed!

But Isaac is home and I am at peace.

Saturday, August 30, 2008

Isaac Is Coming HOME!!!!

sometime this afternoon. :D

Friday, August 29, 2008

Rocking My Baby

Came back from lunch today to find Isaac's nurse rocking and cooing over him. He'd woken up a little early so she was keeping him busy until I got up to feed him. He is a snuggly baby. I do wish I could request specific nurses. Isaac and I both approved of her. While some nurses are all business, others really seem to enjoy the little ones.


Spoke with the endocrinologist today. He showed me some insulin graphs. Apparently even on Lantus, individuals who don't produce insulin will have higher peaks and valleys. Isaac has been fairly stable, leading the endocrinologist to believe that Isaac is able to produce more insulin now. He does well for about 18 hours on one dose of Lantus and then the endo theorizes that his pancreas cells give out and the Lantus also peters out. It trends upwards fairly sharply after that point. I asked about doing another C-peptide test, and he said that was something we could definitely do down the road. It would show whether his insulin levels have increased, but he was sure just by looking at his glucose levels that he was producing more.

Great news! Perhaps, perhaps, this is transient diabetes. Still not possible to tell, but maybe! At any rate he only needs a small dose of Lantus, so that in and of itself is great.

Jonathan Doesn't Toot His Horn Much...

So I will!

Jonathan presented at an Open Source conference in Salt Lake this morning. They invite the best presentation of the day to speak again in the evening in front of everyone. So Jonathan is speaking again tonight.

That's my man!

Interesting People at PCMC

I was chit-chatting with one of the few male nurses I've seen, a gentleman probably in his late 50s. He was friendly guy who liked to talk. I asked him how long he'd worked at Primary's and he said 4 years. "Oh, so where did you work before that?" "I was in construction for 25 years before that."
How's that for a career change?

Around noon I saw a woman in the scrubbing up room of the NICU. She had a heplock still in her hand, and I asked if she'd come from the hospital. "Yeah, I just had my baby this morning."

While parking the car one day, I spotted two women in long dresses. Did a double take, and sure enough, long prairie type dresses and gibson girl hairdos. They were clearly FLDS. I've only seen them in person once before...protesting a bill before the legislature eight years ago. (As I recall, the bill passed.)

Several days ago, when I was in the mother's room pumping, Jonathan recognized a woman passing in the hallway. "Hey, I think you delivered my son nearly 6 years ago at American Fork Hospital."
"Yep, that sounds about right."

Weighed him again tonight...

and he's now just over 7 pounds. (3.18 kg)

Thursday, August 28, 2008

Glucometer Saga Part ??

After lunch I came back up to feed Isaac. His nurse swapped with another nurse at 1:00 because the NICU had some new admits and the nurses got shuffled around. I found her with the phlembotomist using the ISTAT reader (lab reader) to test his glucose. I inquired as to why...his sugar was supposed to be read by his glucometer throughout the day, and 1x in the morning compared with the ISTAT. She'd been led to believe that his sugar was supposed to be read with the ISTAT throughout the day and the glucometer used once in the morning.

So she tracked down Isaac's nurse practitioner who clarified things and wrote a clear (I hope!) order in his charts. Isaac's bedside nurse apologized up and down. Really it wasn't her fault, I understood. I sure was glad to be there to correct this, though. The ISTAT requires so much more blood, and to have it done 8 times a day would have Isaac terribly anemic in no time. The ISTAT lab reader ended up erroring out, so it didn't even get a glucose reading. I showed his nurse how to use the glucometer (she'd never used this type before) and got his glucose number. His nurse in turn made a very clear sign in large letters explaining how and when Isaac's sugars were to be tested and hung it on his crib.

I'm hoping that this is the end of the glucometer saga...

6 lbs 13 ounces

His sugars are much more stable, and they are starting to talk about a going home time line!

Isaac is off of the glyburide and has been for 24 hours. The doctors (and Jonathan, who put the data in a spreadsheet and graphed it) didn't think it was affecting his sugar levels much. Going to keep an eye on him during the day today, and if his sugars shoot back up then perhaps the glyburide was playing a role...but I don't think it will.

He's on Lantus twice a day, and none of the regular quick acting insulin. This morning his sugars were actually a little on the low side, so there's still some tweaking still going on. His doctor commented that in a week he will likely need the current higher dose with the rate he is eating and growing. They aren't used to such great eaters, but this is a typical Ellis kid for me.

Things are looking very good. I am a happy mama!


"It's tasty for girls!" (Said whenever discussing a favorite food. Used more recently by her parents to convince her that unfamiliar foods are good- with mixed results.)

"I wan' to go kindergarten!!!" (Said repeatedly. She wants to do whatever Matthew does.)

"I free! (three)" "I a big dirl!" (Announced proudly to random strangers.)

"Naomi Lissa's friend." (She's just beginning to grasp the concept of friendship.)

Wednesday, August 27, 2008

Fat and lazy is no way to go through life

I was modestly pleased with my highly normal blood sugar reading today since my mother keeps warning me how if I stay fat I'm going to get type 2 diabetes and die young.  [Expository story deleted by Rachel.]
Rachel received the good news less than enthusiastically.  "It wouldn't kill you to take her advice anyway!"
"It nearly did!  When I started exercising I ended up spending a month in a shoulder brace!"
Rachel and her mom started suggesting exercise less likely to get me hurt.  "You should try swimming."  Boring.  "Running."  My father and my brother have already had arthroscopic surgery; I don't want to be next.  "Walking."  Boring.
"Water aerobics," she joked.  No.  But water-skiing?  I think we're on to something!
Rachel thought for a second.  "Your problem," she said, "is that your idea of exercise is ten years younger than you are."

Poke poke

Isaac's NP scheduled an appointment for us at 2:00 with the hospital Diabetes Instructor.  Under the impression that someone would know where the instructor was, I showed up at 1:55, to find out that I was mistaken.  The only thing anyone could tell us was that she was on the third floor.
The third floor is BIG.
I was a man on a mission, so when the first person I asked for directions had no idea where to look and disappeared, I left Rachel (who didn't want to appear rude by leaving before she got back) and found someone who did.  Instructor located, I went and found Rachel and we got started.
I took my blood sugar with the lancet.  (112.)  It took me 3 tries of increasing lance depth to get enough blood.  Turns out the sides of the fingers have less nerves, which was news to me.  I will have to let those clowns at the Red Cross know about that next time; they always jab the center for their tests when you donate blood.
Then we learned how to give insulin shots, practicing on an orange first.  Then I gave Rachel one in the back of her arm, and she returned the favor.  Surprisingly, puncturing skin does feel like puncturing an orange -- a little resistance at first, then it slides in smoothly.  The needles are tiny, much smaller than the ones you'd use for your immunization shots.  Feels like a bee sting, only it fades away faster of course.  Rachel almost wondered why Isaac makes such a big deal out of it, but he doesn't have nearly as much fat as we do which probably makes things more painful.
So this was Step One towards getting Isaac home.  Nobody is willing to make a prediction yet, only repeating that he can go home "when he's stable."  But this is a Very Good Sign.  Just in time, too; having to choose which of her kids to be with is really taking a toll on Rachel.
On the "hospitals make you count your blessings" note: as I left, I saw a little girl Melissa's age zipping along in her walker, minus her left leg.  I tried not to stare, but when she and her dad had passed, I turned and watched for a minute.

Tuesday, August 26, 2008

Unhappy Mama

This is a pity post; you have been forewarned.

Took the kids to see Isaac tonight, and went to his room only to learn he'd been moved. I get to his new location and the phlebotomist is there using the lab reader to check his glucose. I ask his bedside nurse what was going on, why weren't they using the glucometer? Apparently someone is in a tizzy again about the glucometer being used because there isn't a protocol written for it for the NICU and the nurses aren't trained in how to use it. What the?!? Aren't trained??? It takes less than 5 minutes to be "trained" to use this device. I look around the room and see pumps, drips, lines, ventilators, and other complicated pieces of equipment, and a glucometer is out of the realm for training!?! ARHHHH! The bedside nurses who have used it with Isaac have had no problem, and the lab reader requires much more blood than the glucometer. Isaac has already had 2 blood transfusions due to all the blood they've needed to take out of him; I'd like to avoid a 3rd, thank you very much. Plus, when we go home, we will be using a glucometer, not a high end lab reader. Later that evening I spoke with the NP when she finally got out of a meeting. She agreed to allow the glucometer for the evening, but it looks like we may be in for round 3 in this fight tomorrow. I don't get the bureaucracy, his doctors have approved it for his use. They've gone all the way to the head of the NICU. Why, oh why does this keep coming up?

I looked at Isaac's poor heal this evening. It seems the nurses favor his right heal, and it is dark purple and scabbed over with pokes. His other heal is not bad, and neither are his fingers. Tomorrow I'm going to talk with the nurses about using other parts of his anatomy to stick.

The room we were in was an isolation room. Isaac was placed there because he came from home. It was quiet and somewhat private. Now he's in a big open room with lots of other babies. It is incredibly loud. Nearly every baby was crying, and we seemed to be right next to the nurses' gossip station and they were quite loud too. It was yak, yak, yak, amid the wailings, and beeping of the monitors. Poor Isaac. I'm also concerned because he is right next to another baby with the same name (though spelled slightly differently). What if someone isn't paying attention or gets careless with medication or procedures?

Isaac is also sharing a nurse with a baby on the opposite side of the room that has many wires and tubings. This has me concerned that little attention will afforded to him because it's just not possible. I know his basic needs will be met, but no one will hold and rock him when I'm not there. And he needs to be held! Who will comfort him when he cries? No one will be there to love him, when I'm gone. I hate, hate, hate this situation!!!!!!!

It just rends my heart to leave him, and now I am very worried. My heart is torn in two. I worry and miss Isaac when I'm home, and I feel terrible about missing out on time with Matthew and Melissa when I'm at the hospital. I should be there to pick Matthew up from kindergarten and hear all about his day when it is fresh on his mind. I should be snuggling more with Melissa and taking her to story time at the library. Instead I am a tired, sometimes cranky Mama, who is insufficient for any of my children.
[Jonathan's postscript: when we called at 4 AM during a pumping wake, his nurse said she'd found the authorization for the NICU head for the glucometer and was printing a sign to hang on his crib to let everyone know that It Was Approved Thank You Very Much.]

I wonder what she was dreaming

Melissa woke herself up at 5 yelling, "Don' spank me! Don' spank me!"
I think she finally went back to sleep a few minutes ago.

[Rachel: I think the situation is stressful for her too, because she is very rarely spanked, even when richly deserved.]

Monday, August 25, 2008

Busy Day

First Day of Kindergarten

Matthew started kindergarten this morning. I think he was a little apprehensive, because he was somewhat grumpy this morning. When we dropped him off, Melissa cried because she wanted to go too. I called Matthew up after school and he was so excited to tell me all about praying mantises. "Guess what...? Did you know...? Guess what Mom...?" He was also quite pleased that there were more boys in his class than girls (someday he will wish it otherwise, I suspect). He seemed pretty happy with his first day of school.
At the Hospital

After dropping Matthew off at kindergarten, Jonathan and I headed up to the hospital where we met the Dr. Z and the phlebotomist to draw blood for the genetic testing. I have to say if you ever need blood drawn and happen to be at Primary Children's, request Lou. It took her just a split second to get the needle in Isaac's vein- no hesitation, no probing. Then she drew from Jonathan and me, and I suspect she could have done us blindfolded. That's 20+ years experience poking the tiniest veins. The lady is good!

Since he's had such high sugars, his kidneys have had to work overtime resulting in low sodium in his blood. They are supplementing with sodium now. The day nurse tried to give it to him straight which resulted in a lot of gagging and ultimately upchucking half his lunch. Can't say that I'd blame him, blech.

Starting the Lantus again today. So far the glucose levels have look very good on the Lantus, under 100 even! Isaac continues to impress his nurses with his appetite (that's my boy!). Jonathan graphed Isaac's glucose levels and insulin intake while on and off of the glyburide (excluding the times on Lantus); we're not noticing a significant difference...

Back Home

Matthew went shoe shopping with Grandma, while I napped on the couch. Grandmas are great!!! They found a pair for school and a pair for church. Grandma said that Matthew took to shopping like a typical guy. That is to say, he was bored out of his skull until he got to pick out a treat of oreo cookies. Melissa slept while they were gone, so I got a nice nap too. Getting up twice a night to pump is more time consuming and tiring than getting up to feed a baby. Meanwhile, Jonathan went back to work for a few hours. When he return, he brought beautiful flowers. What a sweet husband. A friend brought dinner by, which was appreciated. Thanks Jenny!

And Back at the Hospital Again

After dinner and dishes, I headed back up to the hospital with Mom to feed Isaac once more. (I want to make sure that he doesn't forget how to nurse with all the bottles he receives...) He's looking very good. I warned the night nurse about the sodium incident and advised she put it in some milk first. She did, and down it went without protest. Now it is bedtime. 'Night 'night.

It could be worse

We could be taking our child through the door marked "Oncology," like the woman and her eighteen month old we saw.  I don't know for sure that the toddler was a patient, but either way, I hope I never know what that's like.

Sunday, August 24, 2008

My Garden

Mom cooked roast and potatoes for dinner tonight. (I've missed Mom's cooking!) Matthew helped pick and husk the corn and collect some of the tomatoes from the garden for dinner. We've eaten carrots, beans (purple beans! and some plain green ones), and zucchini as well so far. Today I picked the first cucumber. I'm rather proud of my little garden. I've been making grand schemes for a big garden when we have a little more land, someday.

The tomatoes are really producing! We've harvested several large bowls of them already.

Grandma is a good sport

Video games are not Rachel's mothers's cup of tea, but she has gamely given Rock Band and Bomberman a try.  I've already recounted our Bomberman victories.  But on Rock Band we had to reluctantly conclude that Grandma was never going to be a Guitar Hero.
We tried to get her to try vocals or drums, but rhythm having been her Achilles heel at guitar, I had to concede that drums probably wouldn't go much better.  And Matthew didn't want to give up vocals, becuase he sucks at guitar (and drums) too.  So Matthew and I played a few songs by ourselves.  (Where Matthew saved my bacon three times.  The "hard" difficulty on drums, really is.)

For the Inordinately Curious

Some articles I've dug up on NDM...

Some were more interesting/useful than others.

From the journal Diabetes (2005)
and another Diabetes (2003)
Diabetes Care (2004)
Journal of Medical Genetics (2002)
Brief overview Athena Diagnostics
Orhpanet Journal of Rare Diseases (2007)
New England Journal of Medicine (2004)
This next one you'll have to download the pdf...

There are some others I found interesting, but I signed personal use agreements, so can't post them. One from Endocrine Reviews published in 2008 was particularly good...

Wish I had access to a university library, then I could pull all kinds of articles.

Team spirit

Grandma and I challenged Matthew to a game of Bomberman.  Matthew got a computer partner to keep things even.
The first two games Dad and Grandma were shut out 3-0, 3-0.  Matthew was thrilled.
The next two games the old farts took 3-1, 3-2-1.  And recriminations ensued.
"RRRRRR!  He keeps making me die!" Matthew complained about his partner.  "He ALWAYS makes me die!"
A few minutes later: "Haha!  I killed Red! [his partner]"
"Why'd you do that?  You would have won the game if you hadn't killed him."
"That's cause HE MADE ME DIE!"  Matthew's face is fierce and he's literally shaking his fist at the screen.  I wish I had a video.
I never was able to explain that if you want to win (and oh boy, does Matthew ever), killing your partner is suboptimal play.  Even if he killed you first.  (And it's more accurate to say that Matthew walked into his bomb, than that Red killed him deliberately.)
So if you're ever on Matthew's team... watch your back.

Quick update

Isaac does well on the Lantus, but at rounds yesterday they said they were taking him off of it to see how the glyburide (the sulfonylureas) affects him without the Lantus muddying the waters.  This week's neonatologist (a new guy, not Dr. Chan) pointed out that even if the glyburide just reduces the amount of insulin he needs, it's still worth it.
He was up to 6 lb 5 oz.
Yesterday morning was the first time I've fed any of our newborns.  Rachel took the older kids for some Mommy Time so I went up with Grandma (Linda) to see Isaac and bottle-fed him.  He was very alert afterwards, just looking around and chilling with me in the rocking chair.  He fell asleep just before it was time to check his glucose again.  At least at 11 he didn't need more insulin, so he just got a shallow poke.  Then Grandma took a turn feeding him and he fell right asleep.  In the evening, it was Rachel's turn to go up.
Rachel pointed out the other day that little Isaac's already had far more needles in him in his two weeks of life than she has had in almost thirty.  Poor kid.

Friday, August 22, 2008

When Isaac Comes Home...

I intend to rock him all through that first night. Just the two of us.

In the hospital, we rocked, nursed, and snuggled then I had to say goodnight and walk away. Not to complain, but this is very hard.

Once the magic smoke is gone, you can't put it back

I was installing a newer version of linux on the craptop (an ancient 800 mhz p3 laptop that I keep for Matthew's use) and unknown to me I had plugged it into an outlet that only worked when an otherwise unused lightswitch was in the on position.  Mid-install, someone turned it off.  When the battery died, so did the craptop.
No problem, I'll just restart the install on a more stable outlet.  Plug it in, it started to boot and died again.  Then I smelled something.  Uh-oh.  Turned it around, sure enough there was smoke coming from the power plug.
Damn.  Time to get a new craptop.

Kindergarten Countdown

Everyday Matthew announces how many days left until kindergarten starts. Three days left. He is very excited.

Two Weeks Old

Hard to believe, it seems so much longer...

Glucose levels are all over the place ranging from the mid 200s to over 500. A normal baby's glucose ranges from 50-100. The doctors are trying get it around 100-200. Going to start the long acting insulin Lantus again, which seemed to work pretty well. One of the docs said he's going through insulin like water. On the bright side they now have a pre-diluted solution of insulin upstairs that the nurses can draw from rather than waiting for the pharmacy. So much faster! They've bumped up the sulfonylureas (glyburide) to the maximum dose far nothing. Sigh.

He had a head ultrasound yesterday to rule out very rare Bad Things sometimes associated with NDM (I didn't ask and I didn't want to know). I asked about the radiologists report during rounds today. Dr. Z said reassuringly that it looked perfectly normal. Dr. C, with a gleam in his eye deadpanned, "Well, normal for your family anyways." Wasn't expecting that one, so I didn't have a good retort at the tip of my tongue. I just shook my head while everyone else had a good chuckle.

Isaac graduated to a crib since he doesn't need a warmer. He still eats very well, downing 3 to 4+ ounces at a time or however much he nurses. For once having an overabundant supply of milk is a blessing. The refrigerator and freezer at the hospital are well supplied for Isaac.

Thursday, August 21, 2008

A Long Tiring Day

I'll write after I get some rest...


I just discovered the dark chocolate covered, vanilla ice cream Haagen-Dazs bar. It was love at first bite. Then I turned the package over. Hmmm. It's going to have to be a long distance relationship. Total fat 25 g, saturated fat 16?g, total calories 350. But oh, it was good! Plus it had ingredients I actually recognized (cream, milk, sugar, egg yolks, vanilla, Belgian chocolate....). Always a good thing.


Wednesday, August 20, 2008

Poor Baby!

When I came up to see Isaac, he was crying in his bed. I picked him up and bounced and talked to him. His nurse came in and said that the poor little guy was starving. She'd just now received his insulin. Apparently he'd last eaten at 3:00 and it was now 8:00! They are now doing ad-lib feedings (on demand) and he woke up hungry right at shift change so everything took much longer. Poor hungry baby!

He is gaining weight like a champ though. He weighed in at 2710 grams or 5 lbs 15.5 oz. Back to his birth weight!

Tonight I bathed him in the tub. He wasn't too sure what to think of that, but he was pretty sure he didn't like it. Except for washing his head at the end. He did like that.

And Odds and Ends

Isaac is now dressed in a little onsie since he doesn't have many tubes or wires in the way.

His cord came off yesterday morning. Yay!

There is rumor that they want to transfer him to the children's unit one floor down. On this floor the nurses are trained to handle diabetic children. Also the NICU is getting more sick babies in and want to move the less sick babies out. Currently there are still beds available in the NICU and none on the floor below. Dr. Z and Dr. C are both very much against transferring him, and are fighting to keep him. Dr. Z contends that the doctors on the floor below may not want to continue down the same treatment path using the sulfonylureas (it is new and a there isn't a lot of research on it), they don't know his case history well and have not done the research the docs on the NICU have done and this may delay treatment, plus his blood sugars still are not stable. I think she may want to keep him too, because his case interests her and she would like to see it resolved. I found out that she's read hours of articles each night on his particular condition, and I think she is loathe to not see him through to the end. We'll see what happens. I kind of hope he stays as well.

Since he is doing so much better, he now shares a nurse with another bed and has for the past few days. Just another sign that he is getter more stable, anyways.

His oxygen levels still dip up and down, but not wildly so. He is on a minimal amount of oxygen. They did an echocardiogram yesterday, and the results are a normal looking heart, but one of the fetal shunts hasn't completely closed off yet.

They are still trying to track down a geneticist who would know what labs to draw and where to send them. Either the labs would show what the problem was, or it would eliminate some possibilities...

Isaac Update

Yesterday afternoon, the doctors decided to try the long acting insulin, Lantus. The long acting insulin acts kind of like the form of a mesa. The insulin level jumps up sharply, plateaus for roughly 12 hours and then drops down. Judging by his glucose levels, which were all in the low 100s to 200s throughout much of the night, he responded beautifully. He did need a small dose of insulin (it's on a sliding scale and is determined by his latest glucose reading). This morning his sugar reading jumped up again to 430.

Today he has the blessing of two endocrinologists to start the sulfonylureas treatment. According to the endocrinologist it has about a one in four chance of working, and if it works, it works much, much better than insulin. We do know he is able to make very low amounts of insulin. His C-peptide test showed that. This gives me some hope that it is the transient form. It's also oral so if it works, it will save him some pokes. The doctors had to wait until 3 PM to start to make sure the Lantus had completely worn off. Otherwise if it works, it could drop his sugar too dramatically; something his doctors have been extremely careful to avoid. So he is back to the 6 hour insulin doses on the sliding scale.

Speaking of pokes, yesterday they brought up a glucometer to in order to use less of his blood with each glucose test. When the phlebotomist does the testing, she has to use a small thin tube of blood, a glucometer requires just a drop. The glucometer is slightly less accurate, however, and you can't get the K and Na readings from it. The charge nurse didn't approve the glucometer because there isn't any protocol for the NICU department. His doctors were dismayed when they learned that the glucometer had been removed, so his fellow, Dr. Z, talked with the person in charge of the entire NICU and got a special exception for Isaac. When/if his blood glucose levels get below 80 or over 400, then they will also use the regular lab reader.

I listened in on rounds today and they also discussed allowing demand feedings once his blood sugar is better under control. Currently he is bottle fed or nursed every three hours. Before he can eat, his blood is drawn and tested. (His poor fingers and heels are covered with little bandages) Then his insulin is ordered up if it is needed. Unfortunately the insulin must be diluted for him and the dose varies each time so it can't be made up in advance. So the NP writes the order, the bedside nurse sends the order down to the pharmacy, the pharmacy sends the insulin up to the floor, and the bedside nurse must then pick it up. Then she must confirm the dose and patient with another nurse, and finally he gets his insulin and can eat. This is a process that can take as long as 45 minutes. Meanwhile poor Isaac is getting hungrier and hungrier. This morning I bounced him, rocked him, gave him a pacifier (which he rejected), my finger which he accepted for a while, talked to him, and tried every distraction technique I could think of. He didn't cry but was clearly rooting, smacking his mouth, and looking for something to eat. He is a very patient baby. My other two would have been screaming full throttle if required to wait.

Here's hoping that the sulfonylureas works!

Short update

I went back to the office yesterday so this is second-hand via Rachel.  I'll just give a summary and Rachel can fill in details later if she likes.
The doctors decided that the short-term insulin just wasn't working on its own, and gave Isaac a dose of slow-release insulin as kind of a baseline.  Then they supplemented that with additional short-term doses.  His glucose reading was in the 100s and low 200s all day and night, and at least once he didn't need the extra short-term shot.
They also got Isaac a glucometer that just needs a small drop of blood to read instead of a pipette's worth.  A pipette is already pretty small but this should make things just a little easier on him.
Isaac continues to eat well.

Tuesday, August 19, 2008

Some Pretty Special People Work in The Newborn Intensive Care Unit

Take for example Gary, one of the NPs. His son was born premature 24 years ago. From his experience in the hospital and taking care of his son, he decided to become a nurse. So he went back to school and has now been caring for other little people for decades. Not only is he good with little people, but he is great with "big people" too. He says he understands that it can be overwhelming, and to never be afraid to ask questions, even if it's a question you've asked before. He feels it is part of his job to help the parents as well. Really nice guy. The bedside nurses (with just the one exception) have been fantastic as well.

It is so very hard to leave Isaac each night, but at least I know there are good people watching over him.

You Know It's Time to Go Home and Get Some Rest When....

You dump 2 oz of just expressed milk down the front of your pants while trying to pour it into the sterile containers. Wasn't sure whether to laugh or I laughed.

Isaac gets an incompetent nurse

Isaac's nurse tonight did not project the aura of competence that his other ones have.  In fact, the adjective that comes to mind is "bumbling," like a well-meaning kid who cleans your mirror with sandpaper.  No, our kids have not done that.  Yet.
Rachel and I broke for dinner at 9, and when we came back up Nurse Incompetent was poking about in poor Isaac's wrist with a needle trying to put an IV in.  After two pokes and much subcutaneous probing, she gave up and called for The IV Team.  (Kind of like the A-Team, only, you know, for IVs.  Rachel has never seen the A-Team.  Makes me feel old.)  But as the IV team was about to poke him again, Garry the NP arrived and said, Stop!  I could tell he was pissed.  "I didn't ask for an IV in him!"  What he had done was express regret that the earlier IV had been taken out, in his opinion prematurely, but "you don't put an IV in unless you need to use it.  He doesn't need one right now."
Nurses are only human and as NICU mistakes go this was relatively benign, but we are going to request that Nurse Incompetent not be assigned to Isaac again.  Rachel didn't think it was worth complaining about for tonight's shift but once was more than enough.
(Later, after taking Rachel's expressed milk to the fridge, she got out formula to feed him.  Rachel caught her and reminded her to use the breast milk.  This woman just did not bring her A game tonight.)
[Rachel commentary:  She also kept putting the diaper over the umbilical stump rather than folding it below the navel so that the cord stump doesn't become contaminated with urine or poop.  Twice I fixed the diaper after she changed him.  The next day we talked with the charge nurse and requested that that particular nurse not be Isaac's nurse again.]

Monday, August 18, 2008

Matthew's New Glasses

About a week ago, Matthew mixed up one of the neighbor kids for another, so Jonathan took him down to the optometrist to have his eyes tested. Sure enough, he needed glasses. Jonathan let him pick out his very own frames. One of the frames he picked out is a thin wire frame that looks really cute on him, the other is a thick clear plastic frame that looks dreadful, but he likes them. Matthew has been so excited about his new glasses. His excitement spilled over to Melissa, and she wanted glasses too. Jonathan got her some sun glasses with her very own case to prevent jealousy.

Cyborg Baby No More

They lost the artery line this morning and decided against replacing it. For testing glucose, they are now using heel sticks. The IV in his hand is gone as well. This afternoon they took out the needle in his scalp. So Isaac only has some monitors and oxygen on. Hooray!

What happens when you don't fill your days with make-work

Rachel started a conversation with Rygg's nurse for the day about her son.  We ended up talking about the fantasy novels he (and she) likes.  She pointed me at one in particular, whose author blurb on Amazon reads, "Christopher Paolini’s abiding love of fantasy and science fiction inspired him to begin writing his debut novel, Eragon, when he graduated from high school at 15."
"I bet he was home schooled," I told Rachel.
"Actually, you're right," said the nurse.


Back at the NICU after staying away for a couple days because of my cold.
Little Rygg's blood sugar was higher last night, from the mid-250s up to 400s.  We were here for rounds this morning as they discussed what to do about this.  One of the doctors pointed out that the insulin he's getting every 6 hours will be completely gone from his body by 4 hours.  Typically it's not recommended to give it more often than six but Dr. Z, the fellow (her name is long and Polish-sounding, and I can't spell it) said she would watch him closely today and possibly order insulin every 4h.  For now they just increased his next dose (right now) by 10%.
Dr. Chan, the neonatologist, added that they'd be presenting his case at a meeting of doctors and professors from the university at 3 this afternoon to see if anyone has any useful suggestions.  After that Dr. Z has another meeting at 4, but we should be able to grab her in the evening to see if anything came from that.
I have to say that, having seen the rounds process, where the fellow and nurse consulted their three-ring binders frequently, I'm a little surprised at how low-tech a lot of the NICU is.  The vital signs monitors are electronic but everything else is just a paper record.  While the doctors were trying to correlate insulin times with blood sugar readings and feeding times in their heads I couldn't believe there wasn't a way to just chart those numbers on a graph on the station's computer.  It would be trivial if these records were digital but apparently they are not.  To someone in my line of work that's a little scandalous.  Not to mention that there's just that much more of a factor for human error that could be avoided with modern tools.

Sunday, August 17, 2008

Gaining Weight

Isaac impressed the doctors this morning during rounds with his weight gain. He's now 7 oz heavier than he was when he was admitted to the NICU. He didn't even start eating until Friday evening because they had to get his sugar under control first. 7 oz!

The doc who saw him Thursday remarked several times on how great he was looking. Grow Isaac grow! I'm trying to pump and nurse enough so that he doesn't have to be supplemented with formula, so far so good. Growing baby = happy mommy.


I think the Lord has been watching over Isaac and our family.

Originally I planned on weighing Isaac on Friday as long as he was going through diapers and looked okay. Thursday morning I began to get concerned because he didn't look like he was filling out at all and he was too sleepy- but he was still making lots of diapers. I began praying for him. By evening I decided that he needed to be weighed right away. The pediatrician's office isn't open in the evening, so I took him to the post office and used the scale there to see his weight. My heart dropped into my shoes when I saw how much he'd lost. I took him home very upset. I made some calls to the pediatrician, my midwife, and my Dad. They were all very concerned, but didn't have quite the urgency I was feeling. Of course they couldn't see him over the phone either... My Dad and midwife both expressed their confidence that I'd know what to do though. The pediatrician advised bottle feeding him during the night and taking him into the office in the morning; unless I was really, really concerned, then take him to the hospital.

Jonathan was at his Python meeting, so I waited until he got home. My Mom suggested getting a blessing, so when he arrived home he and a neighbor gave Isaac and me a blessing. Right after the blessing I told Jonathan that we needed to go NOW to Primary Children's Hospital even though there are several hospitals closer. I just felt we needed to be there. So we packed up and left. All the way there I was hoping that it was a simple matter, but felt in my heart that there was something really wrong.

Jonathan already wrote about our experience in the ER, so I won't repeat it, but it was very good he went in that night. He would have been in much worse shape had we waited any longer. Also, it turns out that even if we had gone to another hospital, Isaac would have been transferred to Primary. So just as well we hadn't wasted time.

What are all those tubes and wires?

You can't tell from the previous post's picture, but Isaac is one wired baby. His blanket covered up much of the tubing, and his head is angled so you can't see the needle in his scalp.

A lot of what is on Isaac is just to track his vitals. His temperature, heart rate, oxygen levels, respiration, and blood pressure are constantly being measured. Each has its own sensor pad somewhere on his body.

The rest consists of lines to either take stuff out or put stuff in. He has an IV in his left hand with three connecting pieces that they can use for putting saline in, or antibiotics (which reminds me they took him off of the antibiotics because he doesn't have an infection- he was on as a precaution), insulin, or heparin etc. The needle in his scalp is likewise used for "putting stuff in." When I was up this evening they were using it for his blood transfusion. His artery line (previously through his umbilical cord, now in his wrist) is used for his blood draws so they don't have to poke him so much.

The thing around his face and nose is his oxygen. That tends to come on and off depending on how Isaac is doing.

Honestly, it's a little intimidating at first, but you get (sort of) used to it.

It is not good when your case interests the edocrinologist...

I saw the endocrinologist today. She started discussing the case with the nurse practitioner. I asked a question, and she gave me a long look.

"And you are?..."

"Rachel." I replied not quite getting what she was asking.

"His mother?!"


"Oh! You looked too good to have just had a baby."

It is silly, but that made me feel a little bit better.

She was quite friendly and more than happy to discuss the case with me and help me understand a bit more on what was going on. Unfortunately some of it went over my head, but I'm trying to pick up what I can. She has cared for infants in the past with neonatal diabetes. From what I gathered, there are numerous reasons a newborn could have transient or permanent diabetes. It could be a goof up on chromosome 6, or it could be a problem somewhere along the line with the sulfonylurea channel in which the insulin is made, but can't be excreted by the cell. She's planning to start him on sulfonylureas to see if that improves the situation. There is a genetic lab in England that follows cases like these, but they want more information on Isaac before they get involved.

On a good note, the endocrinologist seemed optimistic that Isaac has transient diabetes rather than permanent. She was also pleased that he came out a good size for a baby with diabetes.

Apparently Isaac's sugar numbers while very, very high are not in the upper bracket of blood sugars. She's seen kids with sugars as high as 1500, numbers that would basically take out an adult. "These kids (diabetic newborns) are very, very resilient." She is most concerned with his numbers getting too low and causing seizures and shock, so they are carefully monitoring his sugar levels and insulin. Another primary concern is keeping him well hydrated, because just as in type I or II diabetes, these kids pee constantly. This is why keeping track of wet and messy diapers (he made a lot of those too), wasn't a good indicator of Isaac's health before we brought him in to Primary's. He couldn't make use of the milk he was eating, it was just going right through him. Basically his organs were starving.

As far as long term consequences, the endocrinologist called that a "loaded question." There are a number of possibilities depending on what exactly is going wrong. For one, he's slightly more likely to develop type II diabetes later in life...

From what I gathered, there are still lots of questions, but the focus right now is to control Isaac's sugar and have him gain some weight. The hope is that it is transient diabetes and it will go away over time.

Currently the endocrinologist is optimistic about Isaac. She says she doesn't sugar coat news or give false hope in order to make the parents feel better, because that isn't fair to the parents.

This is all brand new to me, so I may have misheard or misunderstood some things. As I learn more I will write more. For those that are interested, here is one of the articles the endocrinologist referenced, published in The Orphanet Journal of Rare Diseases.
It goes into a lot more detail than I have. My brain is tired right now and I haven't been able to digest it all yet. I plan to delve into some more articles, read up some so I can ask more intelligent questions.

Saturday, August 16, 2008

Nanny state

You'll be pleased to know that the vast danger posed to our way of life by breast pumps is being vigilantly monitored by the government and medical community.
I've bought powerful narcotics with less fuss than it took to rent a good pump.  Not only do you need a prescription (what the hell do they think someone's going to do with an illicit breast pump?) but some places further required the doctor or nurse call them in person, too.  The one we eventually went with was one of these, because the others were either out of the high-end models or closed on Saturdays.  What a pain.

The Good, the Bad, and the Terrific

And a view from the NICU...

And actually he's looking much better than he was.

First the terrific:

Isaac's blood sugar continued to yo-yo through the night. This morning they tried taking him off of the insulin again to see how he'd respond. 25 minutes after eating his sugar was 135! An hour and 10 minutes it was 165. He hasn't had such low numbers after eating while off of insulin. His sodium and potassium levels were likewise good. His blood sugar went up again to the 200s several hours later, but for a brief time he didn't need the insulin. They are now going to try shots of insulin to see if they are able to control his sugar that way. He doesn't have much in the way of fat to disperse the insulin so it's an iffy proposition. All those blood draws leads into....

The Bad:

Even though they draw tiny amounts of blood, he's a small fellow to begin with and can't spare a whole lot of blood. The phlebotomist (she tests the blood) ran a hematocrit. He's a bit anemic and somewhat dehydrated. The doctor recommended either more saline or a blood transfusion, while strongly recommending a transfusion. Eek! I truly wish I could give him blood (he only needs a few teaspoons and we share the same blood type), but there's a delay with screening it, plus they probably wouldn't let me since I gave birth so recently. In all the times I have given blood, I never thought it was something one of my children would need. It's kind of a mixed feeling; I'm grateful, and I'm a little leery. I went ahead and authorized it though, because I do think it is something he needs. Since he has a low RBC his oxygen levels have been on the low side, so they've put him back on oxygen. Darn.

The Good:

Isaac is a very good eater. When I'm not there they do bottle feed him the expressed milk, but he still knows how to nurse well. I asked if they could cup feed, but apparently that isn't something the nurses at Primary's are trained in and they aren't comfortable with it. The only other option is tube feedings, and I can't imagine Isaac being happy with another tube down his body. Plus, he seems to relish eating and I don't want to take that pleasure away from him.

Since he is eating so well now, they removed his artery line that ran through his umbilical stump. I guess there is a higher risk of infection and complications with leaving the line in place now that he's eating regularly. Instead the line is now through his wrist (not pictured because this was taken earlier). This way he doesn't have to be poked in the heel every time they want some blood from him. He's also much, much more alert. I got to hold him for about an hour while he looked around, gazed at the lights, me, anything that moved... I think he is feeling a little better.

Someone's been paying attention

Grandma took the kids out for a fun time yesterday, starting at the skate park and ending at McDonalds.  Problem: Grandma didn't know how to get to McDonald's.  Solution: Matthew showed her.  Really.
I sure wasn't able to give driving directions at 5.  I'm impressed.  So was Grandma.  I just hope he doesn't show Grandma just how encyclopedic his knowledge of Draper area hamburger places is.

"Little Chow Hound"

That's how Isaac's nurse described him after she fed him at 9 pm last night. He downed 3 oz easily and probably would have eaten more if she'd warmed it up. I came in at midnight and he nursed enthusiastically on one side. Probably got about 3 oz then too, judging by how little I was able to pump on that side afterward compared to the other.

His color looks fantastic! Even just 6 hours earlier when I had left him he was pale, pale. He is now a lovely rosy color. They took the oxygen off of him too, because he's able to maintain good levels on his own. An hour after his midnight eating, his sugar level was 195 which for him is pretty good! The results of the pancreas ultrasound came back normal. At least his pancreas looks normal, if only it would act normal!

I'll return in a few hours and hopefully catch his doctors during the morning bedside rounds so I can listen in on their ideas and game plan for him.

Friday, August 15, 2008

Some negative progress

Baby Rygg's next reading after nursing was 280.  They gave him an insulin shot, but the next reading after that was in the 400s.  So they started the intravenous insulin again.
They're going to stick with the IV insulin for a while now but they're going to let Rachel continue to feed him.  I don't know when they want to try the shots again.
I can feel a sore throat coming on.  I gargled with salt water but Rachel's mom will be going up with her for a midnight nursing run.

A couple things I haven't mentioned

Little Rygg's oxygen was a little low when we arrived at the ER, so first they put a little oxygen blower by his face, then put a more serious-looking set of nasal tubes around his head.  He's been on it since.
When we got back to the NICU this afternoon, they told us that they've postponed the PICC indefinitely since he's responding so well to the IV insulin.  He probably won't need the PICC after all, which is good because there's a long list of things that can (rarely) go wrong with that.
His last two glucose measurements were 163, then they stopped the insulin, and just now 106.  Now Rachel gets to feed him.

Progress 2

Came home from the hospital from 9 to 1 to rest a bit.  Checked in by phone and his sugar was down to the high 300s.  Normal is around 80-150 in a newborn.  Got back to the ICU and it went down to 280 260 240 208.  They check it hourly.  So it looks like next reading it will be under 200, at which point they are going to stop the insulin, wait an hour, and let Rachel nurse him and see what happens to his sugar level.
Best case scenario, the insulin he's already had will be the jump start his body needed to get things figured out and he'll be all set.  More likely, the endocrineologist thinks he will need insulin shots for a few months and he hopefully has "transient neonatal diabetes" versus "permanent neonatal diabetes."  They need to switch him to shots so we can take him home.  Actually there will be two transitions, the first to "normal" insulin shots and a second to "long duration" insulin after they're sure he's not going to swing the other way into low blood sugar from the insulin, "which is where you get the siezures" and other Bad Things so we are all for taking things slow and steady.
The just wheeld in an ultrasound machine to see how his pancreas looks.  "I'll take the images, and the radiologist will review them and dictate a report."  So we'll have to keep you posted on that.


Called the NICU, Isaac's blood sugar is finally dropping significantly. When it gets below 200 they will be able to feed him and see how he responds.

When Jonathan wakes up, we will head back, and I will pump some more for Isaac.


Slept a couple hours in the waiting room.  They are giving him insulin through an IV and checking his blood sugar hourly.  The last check (or two?) it's been under 700, so it's going in the right direction now.  They weren't able to get a veinal IV through his navel so they are going to have to do a PICC line, basically an IV catheter through a vein in his arm into his chest near his heart.  IVs near the surface like the one in his hand tend to get dislodged and start dripping into tissue instead of the vein in kids his age.
Funny -- as sick as he is, in the NICU, surrounded by preemies, Isaac is the big one of the group.


The doctor at the Newborn Intensive Care Unit says that she has never seen this before either but she found some papers describing similar cases, and it's likely that it's a temporary hyperglycemic condition that he will grow out of on his own within a few months.  They will put tubes in his bellybutton and give him insulin to stabilize him, which should take 12-24h.  Then Rachel can start breastfeeding him again, and after a couple days of stability we can take him home and start doing the blood test and insulin shot thing.  Then eventually he won't need the shots any more.  That is the plan, anyway.
Unlike in the ER they won't let us back until they are done putting tubes in his tummy and catheterizing him.  Rachel heard him crying on the intercom when they talked to the nurse; a fresh stab through her heart.
They have "parent rooms" for parents to sleep in overnight but they ran out.  Couch time.  And floor time, because there is only one couch.

Second test results

Sodium, potassium, glucose the same.  "It's going to be really interesting figuring out what's going on.  Unfortunately that means more blood draws."  Endocrinologist and neonatologist don't know what's going on.  "I've never seen sugar this high in a newborn."  Maybe get the geneticist involved.  "That will be tomorrow, we're done with tests for tonight."

Blogging from the ER

I called home as I was leaving the utah python user group.  Rachel's mom answered.  Was there a tone in her voice that meant something was Not Good or is my memory shaded by what happened?  She told me that Rachel had weighed little Rygg at the post office and he was down to 5 pounds 3, that she had been pretty distraught, that Mom and Dad had calmed her down a bit and she was taking a bath to clear her mind.
The pediatrician, and the midwife agreed that if he wouldn't eat from breast or bottle that evening then it was time to take him to the ER.  So when I got back our neighbor Brian and I gave him a blessing, then we tossed the baby bag in the car that Rachel had packed and headed up to Primary Children's Hospital in SLC.  I was pretty much retracing my steps; the user group meets at one of the research buildings at the U where one of the members works, in the same medical complex as the hospital.
We got to the ER around 10:20, and after navigating our way to the ER from pretty much the exact opposite side of the hospital where the signs told us was the emergency parking -- supposedly the ER actually has valet parking, so those were VERY poor directions -- we got to the ER where the triage nurse tested his oxygen, decided it looked a bit low, and sent us back to an exam room for tests.  Virtually no waiting; I was very surprised.
In the exam room they put a bunch of sensors on his chest for heart rate and breathing.
Wait.  Doctor came in, wearing a green shirt the color of the RN's uniforms but otherwise unremarkable.  I thought doctors were supposed to wear white coats.  Young, too.  She told us what they were going to do to start, then left.  She was patient explaining things to me in small words; I liked her.
Wait.  Rectal thermometer.  Didn't tell me the reading but if it had been high she probably would have said something.
Wait.  Then they put an IV line in and drew blood from it several times for a battery of tests.
Wait. They weighed him (2.3 kg = 5 lb 1 oz) and put saline on the line to rehydrate him, along with some broad-spectrum antibiotics, just in case.
Wait.  First blood results: low sodium, very high glucose.  Nobody has seen this before; our doctor asked the endocrineologist, with no better results.  Best they can come up with is that it's either (a) diabetes or another pancreatic problem, or (b) the results are whacky because of the dehydration.  They want to re-test after the "lumbar puncture."  I guess they think that sounds less scary than "spinal tap."  They are right.
Wait.  Spinal tap to test for meningitis.  The nurses and doctor all told us how hard this was for parents to watch, since the kids hate hate hate being curled up so their spine is accessible, but the actual needle pain is no worse than a shot.  I stayed to provide what moral support I could and in fact he appreciated having my finger to suck on.  He actually fell asleep after the needle was inserted and while the fluid was collecting, slowly.  I had to ask how to operate the sink to wash my hands; turns out it was foot-pedal operated, and there was a blanket covering the pedals.
Second round of blood drawing, for the sodium/glucose re-test.
Security guy comes in.  "Is everyone okay?"  We and our unseen companions across the partition say we are fine.  Rachel says sotto voce, "This is the emergency room.  What does he think?"
Wait.  Can we feed him now?  Oh, the doctor was going to check on that, let me remind her.  Yes, you can feed him.  We're going to try to get him a bed in the neonatal unit so he won't be next to the kids with contagious diseases.
1:50 AM.  Three hours plus into this.  Not the night we had planned.  I tell Rachel that if it's any consolation, the hospital is one place you can be sure that no matter how bad your night is, you can be sure someone else's is worse.  It's not any consolation.

Thursday, August 14, 2008

A Sleepy Baby

Isaac started out quite eager to nurse the first few days, however, shortly after my milk came in he's been pretty sleepy. He's a little bit jaundiced, but not bad at all. The pediatrician thought it looked very minimal. So that is not the problem...

He does have a good latch and a strong suck, and he nurses through a letdown and for a few minutes afterwards. The problem is I have to wake him up to feed him most of the time. And he can be hard to rouse! I'm setting an alarm at night, because he doesn't reliably wake up. I've never encountered this problem before. Isaac also does not root and act hungry like Matthew and Melissa did. So far I've tried diaper changes, tickling his spine and toes, and undressing him partially with mixed results. Anyone else gone through this? Ideas? Suggestions?

I plan on weighing him tonight. Keeping my fingers crossed that he's gained some weight...

Wednesday, August 13, 2008

But What About the Mess?

I've been asked many times regarding home birth, "But what do you do about the mess?" Here's our experience:

After Isaac was born, I went back in the tub with him. We snuggled and nursed. The midwife checked our vitals and then put all the laundry in the wash. Isaac had quite a bit of vernix on his head so she got the infant brush and cleaned it off. Then she made up my bed with chux pads. During this time, Matthew, Melissa, and Jonathan made phone calls. After about 15-20? minutes I was ready to get out.

Once upstairs and bundled in bed, Rebecca again checked temperature and heart rate on Isaac and me. Then she drew blood from the cord for the blood typing and gave Matthew and Melissa a placenta lesson (which they thought was very cool). She said the placenta was big enough for an eleven pound baby and gorgeous. Personally, I think you'd have to be a midwife to consider a placenta gorgeous! While the kids were fascinated with the placenta, Jonathan fed me cantaloupe and orange juice. He also served cake for everyone.

The midwife checked me (yeah! no tears!) and the fundus (nice and firm). After which she gave us a lovely swaddle blanket. Things were starting to get uncomfortable, so Jonathan ran to the pharmacy and filled a prescription for the afterpains. Bless him! I got up to use the bathroom and Rebecca started the newborn exam on Isaac. She listened to his heart, checked his eyes, ears, and nose, tested for a number of newborn reflexes, checked his oxygen levels, and took his temperature. When Jonathan got back she weighed and measured him.

When Rebecca was satisfied that we were both stable and doing well, she went downstairs and cleaned our bathroom!

Jonathan put Melissa to bed (she had fallen asleep at the table) and ran to Walmart to pick up newborn diapers. We were planning to use cloth, but Isaac is too small to really fit them just yet.

During all of this time, my one and only job was to snuggle and nurse Isaac. I think I got the best end of the deal.

With Jonathan back, Dawni (our family photographer who is amazing!), Rebecca, Jonathan, and I chatted for a bit in the newborn glow. Then it was time to rest. Before Rebecca left she offered to do our dishes! We politely turned her down.

It was so peaceful resting in our own bed after a lovely birth.

Tuesday, August 12, 2008

Isaac's Birth

I'll tell the story with pictures, not to worry, nothing graphic! (Pictures were taken by Dawni of Dawni Angel Photography)

Labor started in earnest about 5:45. Jonathan called Rebecca at 7 to let her know labor was underway. I thought calling was a little premature and didn't want her to come over yet. It would have been too disappointing if the contractions were just the after affects of the membrane sweeping and cohosh tincture. I wanted to be sure it was labor. Rebecca called Jonathan around 8 for an update, and heard me in the background. "I'll be right over. If Rachel prefers, I can just be in another room for a bit." Jonathan told her that it was past the point where we'd left for the birth center when we had Melissa. This was it. He was right, the man knows his wife.

As Jonathan said, labor was spent primarily in the tub. During the contractions he poured water over my belly which helped considerably. He also kept me well supplied with water to drink. Warm water seems to help take the edge off of contractions. (Until the end when nothing helps much, but the baby is coming soon anyway.) Another thing that helped was a pressure point in the hand that Rebecca showed Jonathan. When pressed firmly, that too helped ease some of the pain. Jonathan and Rebecca pulled me through this labor. It was a very intense one for me, and their words of encouragement and soothing hands kept me going. Rebecca called this type of labor "riding the bull," a short, wild ride.

Matthew and Melissa played at a neighbors house until it was bedtime. Jonathan put them down for the night, but they slipped out of bed and hung out by the stairs. Matthew read to Melissa and kept her entertained.

They were very quiet, and I wouldn't have known they were there, except occasionally a little blond head would peak around the corner.

I got pretty restless at the end and got out of the tub. I could feel the contraction roar to the peak and then slowly taper down only to give me a few seconds respite before racing to the peak again. Contractions were right on top of each other and the only thing that seemed to help at this point was to stand. So I did and gave a push hoping to end things soon (even though I didn't feel much urge to push). Rebecca assured me that the baby was coming very, very soon. "You're going to have a baby today! 08/08/08!" I didn't have any cervix checks during labor, so Rebecca's reassurance was very helpful. I can't imagine holding still long enough for checking to even be possible during this roller coaster labor! The second push I gave Isaac came flying out. Jonathan was prepared though and between him, myself and Rebecca, we caught him handily. There was a bit of blood and two minutes later I had to push again and out plopped the placenta. (I'll spare you pictures, gentle reader.)

When Matthew and Melissa heard the baby cry, they darted into the bathroom to meet their new sibling. Matthew checked the baby out and was pleased almost beyond words with his new baby brother. Well, actually he did manage to let everyone know that he was right, it was a baby brother.

I cannot begin to describe the joy that comes with a new baby...

Monday, August 11, 2008


I haven't watched any Olympic events yet, but I did watch the finals of the GomTV StarLeague, which is to say, professional StarCraft.  The tournament is in Korea but Gom hired an English commentator along with their three Korean commentators in a nod to the foreign (non-Korean) fan base.

I won't spoil it for you but I will say that the player I was cheering for won.

A father's dilemma

Tonight little Rygg is mostly sleeping, with hourly wakefulness, which is an improvement over mostly waking with occasional sleep.  Still, Rachel would prefer to get more than forty-five minutes or so of sleep at a time.  (Less, actually, because she falls asleep slowly.)  So she handed him to me to keep quiet for as long as I could.

We did pretty well for an hour and a half, rocking or just holding him.  Then he got fussy.  Then he pooped, felt better, and went back to sleep.

Now if I change him, he will wake up, probably for good.  But I can't just leave him in a poopy diaper.

Sunday, August 10, 2008

Isaac, night 1

(The night of 08/08/08 was night 0, of course.)

Isaac was pretty pissed all night, starting about 11. He was pissed when he was nursing and he was MORE pissed when he was not.  He slept maybe ten minutes at a time every hour.  Not a fun night.  Rachel gave him to me briefly twice, but she couldn't stand hearing him yell even distantly, and even when he was just going to yell at her instead if she took him back.  So we watched a Cosby show together at 2:30 AM, after which I went to wal-mart and got a couple pacifiers, just in case they might help, and some zingers for Rachel and doritos for me, in case they didn't.

At 7 AM Isaac was much happier and slept for an hour, then fell asleep again at 9.  Rachel thinks it is because her milk came in.  I think it is because, having kept us up all night, his work is done.  For now.

Rachel is pretty wasted this morning, but I'm actually in pretty good shape.  That's a nice bonus to my polyphasic sleep schedule; I got all my naps in yesterday during the day while Isaac was happy.  Napping seems to account for about 2/3 of my restedness.

Saturday, August 09, 2008

Isaac Rygg Ellis

Isaac was born last night at home at 9:43, after almost exactly four hours of labor.  For those of you keeping track, this was about half as long as Melissa took, and 1/12 (yes, one twelfth) as long as Matthew.  This is probably partly due to the cohosh that Rachel asked the midwife to give her; Rachel had cohosh when she felt like she could endure being huge no longer with Melissa, and labor started shortly afterwards.  This time, labor didn't ensue by the afternoon, so she took a second dose.  Labor started then, hard.  After Isaac arrived, I told her that next time, if the cohosh doesn't take the first time, wait a couple days before trying again.
So labor was hard but short, and mostly in the bathtub.  For a while we thought she and baby wanted a water birth, but then she got out a couple minutes before Isaac was born and birthed him standing up.  Rebecca teased her about her pattern of birthing near toilets, "but whatever works for you!"  Rebecca Williams attended Melissa's birth too; we highly recommend her to any Utah readers.  She has, or will have soon, a birthing center for those who aren't as enthusiastic as Rachel about the home birth option.  We've now pretty much covered all the bases -- Matthew at a hospital, Melissa in a birthing center, and Isaac at home -- and the hospital was by far the least pleasant experience.  I'm glad Rachel was stubborn enough to fight (USA) convention and try other options.
Matthew and Melissa attended the birth, too.  I tried to put them in bed at 8:30, but when Rebecca arrived and they heard that the midwife was here and this time, she was going to take the baby out, no force on earth could have kept them away.  They were fascinated with labor, and delivery, and I think that was about as far as Melissa's interest lasted (baby!) but Matthew was interested in the whole process, until he was finally put to bed much against his will some time not long before midnight.  "I have too much energy to sleep!" he protested, and fell asleep ten seconds after his head hit the pillow.  Melissa, for her part, valiantly battled a large piece of chocolate cake (that Rachel had made Sunday and frozen for baby's birthday) until the cake won.  I got home from filling Rachel's percocet perscription to find her asleep on the bench at the table.
I learned that the after-birth contractions get stronger and more painful with each child.  I think Rachel just took over-the-counter pain medication after Melissa, but this time it's a good thing we have the percocet.  Other than that though, the labor went about as well as you could ask for.  Rachel should be up and about well before I and her mother and mine are done waiting on her.
Isaac was six pounds and 19 inches, which puts him at the lightest of our children by a large margin, but one inch longer than Matthew.  So he's a skinny little guy.  We've kept him well bundled and snuggled up to Mommy.  So far he just wants to eat and sleep, just like a textbook newborn.  How pleasant, after Matthew and Melissa.  We will see if this lasts; it's obviously too early to tell.  Rachel is a stubborn woman but I could use a little encouragement if God wants us to have another after this.
I caught, with Rachel's assistance -- I think that if God Himself were catching, she would still have had her hands there too, Just In Case -- and Matthew cut the cord.  He was very pleased about that, until Rebecca told him that the boy who cuts the cord has to have a bite of the placenta.  Some cultures do eat the placenta, and some even eat it raw, but not ours, and Matthew shrank into my lap at this news.  "Come on over here and see the placenta.  Bring your fork!"  Everybody laughed, and Rebecca admitted that she was joking, much to Matthew's relief.  Then Rebecca showed him how the baby and placenta had shared a "swimming pool" together until the baby broke the pool and came out.
Matthew made the calls announcing our baby boy, then un-named, to Rachel's side of the family.  We only got through to Andrea and Brian.  I called my brother David, who was the only one who I knew would still be awake at almost midnight EDT.
Rachel presented me with a T-shirt that says "Baby Catcher" on it.  Cute.
Rachel will probably post pictures when we get them from the photographer.  Yes, we had a photographer, too, although the labor went so fast that she almost didn't arrive in time; she stayed until past 1:00 with the midwife.  At that point I think the photography was just an excuse -- she just really, really likes babies.  And little Isaac is a cute one, so I can't blame her.
Update: Isaac's been a busy boy.  He's already had three names.  When he was born, I decided that he looked like a little Rygg, after my good friend Ellis.  Rachel preferred Isaiah.  "Rygg Isaiah" has a nice ring to it, I proposed.  This appealed to both the midwife and photographer.  Rachel was unconvinced.  "We'll talk about it tomorrow."  So we left Name: blank for the night.  In the morning, Rachel was still not convinced but I didn't like Isaiah as a first name, or Isaac, another proposal.  So we went with Thomas Winward as a compromise candidate, a name from our pre-birth candidate list and a family name on Rachel's side.  I thought things were settled and announced this name to some of my family and this blog, but Rachel decided he didn't really look like a Thomas after all, and we finally settled on Isaac Rygg.  I think I will call him Little Rygg until he is big, and then I will call him Big Rygg.

Wednesday, August 06, 2008


Driving Rachel to the mechanic's this morning to pick up our Taurus and put it out to pasture, I bent a few rules.  Most flagrantly, I went through a light that some people might have called red and came within a second of being hit by some minivan driver who gunned it as soon as his turned green without paying attention to me turning left in front of him.  (Please note that "a second" is plenty of time in most situations, including this one.)

Rachel was not amused and told me so.  (Which made Matthew think that telling me that he was not amused either was a good idea.  It was not.)  But that was not the end of it: one of Rachel's friends saw us.  She called Rachel's cell: "Are you in labor?  I saw how Jonathan was driving!"  

That was a little embarassing.  Fortunately, the mechanic was right after the intersection and I got to switch cars, or I probably would have gotten an extra dose of Not Amused.

But, in my defense, Rachel had just finished explaining to me that Thou Shalt Not Brake Hard with a pregnant wife in the car.  So, faced with the choice of braking hard at the light or going through, I went through.

When pregnant wives are not invovled I am normally very good about complying with this particular traffic law.  (And for the record I would like to point out that my one ticket in 15 years of driving is probably substantially below average.)  In Utah, it's legal as long as you're in the intersection before it turns red, so most lights give a little leeway between red in one direction and green in another.  This one did not.

Karma is a bitch

Friday I gently teased my friend Ben about his new Honda sedan.  "Honda driver" is just not part of his self-image.  He'd really have preferred to buy another Audi, but he did the responsible thing and got a sensible, boring family car instead.

Tuesday we took our Taurus in because it was leaking coolant.

Today we bought a minivan -- a Honda, as fate would have it -- because it's just not worth doing $1200 worth of repairs on a car valued at $1900.  Not when the mechanic says that this is just the beginning.

"Minivan driver" is not part of my self image either.

Damn it.

Sunday, August 03, 2008

Water Fight

We've been going a lot of places and doing many things the kids enjoy lately. I figure once the baby is born we'll be somewhat housebound for a while. Some days though it is nice to just hang out in the backyard and have a water fight. I sat in the shade while the Matthew, Melissa, and two of Matthew's buddies played in the pool, on the slip 'n slide, in the sprinkler, with water guns, and buckets. The three boys had fun dousing each other with water. Melissa, on the other hand, could dish it out, but couldn't take it. "Matthew!!! You got me wet!!!" She pretty much did her own thing. The boys then turned their shirts into weapons of war. All was fun and games until they got a little too rough and the ump had to call an end to the water fight. Matthew and Jackson each swore the other was being "mean," and didn't want to be friends anymore. Thankfully neither one is capable of holding a grudge and the next day they were friends again.

Friday, August 01, 2008


I've gotten to the point now where I'm cranky and big. The kids are just cranky, or they've had a series of cranky days this last week. Melissa in particular has been challenging. She seems to want to turn simple requests into federal cases and is quick to throw temper tantrums. Just usual day to day things like putting her underwear on in the morning will elicit tears and defiance. If I didn't have places I needed to be, then she could stay in her room until she's ready to comply. Even getting into the car or out of the car will spark a rebellion. I just don't have tons of energy and patience now so it's been rough. I've been tempted to sell them to the circus, but I don't think the circus would take them. Grrr.

The Day Mommy Cried
Two days ago I was outside tying up some beans while Melissa and Matthew played by the sandbox. The next thing I know Melissa has disappeared and isn't answering me. I searched all around the house calling for Melissa, then I searched inside the house, I go up and down our street and the street behind us. By now it's been about ten minutes and I started calling up the neighbors. (Who offer to look as well). I am this close to calling Jonathan and the police when I see her dart out our front door. I snatched her up and started to bawl. She'd been hiding from me! AHH! I was too relieved to scold her much, but I went over and over with her that she must always yell "Here I am!" when I call her. I gave her a bath and Matthew took a shower, after which we all felt much better.


Pioneer Day

So I've been a little lax in posting lately. That's alright though, Jonathan's been pulling my share. Good job, Dear!

July 24th
Here in Utah, Pioneer Day is a state holiday and many people have off work to barbecue, watch parades, blow stuff up, and...oh yeah, remember the pioneers. It's somewhat like the 4th of July all over again. There are tons of things going on all over the state. Unfortunately Jonathan needed to work. I thought about taking the kids to a parade, but my swollen feet rejected the idea of standing for hours on end. Instead I took them to "This is the Place Heritage Park." At least at the park there would be some shade guaranteed, and walking in 90+ degree heat is easier than standing still. Plus it would be educational! Moms are suckers for educational stuff, I think.

Things have sure changed since I was there 15? years ago with Grandma. Back then I remember a main street with a few replica houses (most we couldn't enter), a wagon ride, and really that was about it. Now it's a bustling little town! In each of the houses and shops there are activities, crafts, stories, people dressed in pioneer garb using the tools, and making handicrafts. The streets are also filled with demonstrations and games.

We first checked out the spinsters house and Matthew pulled wool and watched the spinners and learned about the dyes. Melissa wasn't as interested until we went outside and made little lamb masks for the parade to take place later in the day. Thankfully the table was in the shade. I gratefully sat down while they worked away. It was pretty sweltering.

Then they learned how to play some games. One involved rolling an iron wheel with a stick. Towards the end Matthew got the hang of it.

For another game, two people stood across from each other with two crossed sticks and a small hoop. The player with the hoop on the sticks pulled the sticks apart quickly to send the hoop flying. The other player then tried to catch the hoop and return it to the first player.

The kids also "helped" with chores. Matthew and Melissa each did laundry the old fashioned way with a scrub board, watered plants, and beat a rug.

Matthew kept wanting to know why they didn't have washing machines, why there were no cars or toilets, and how they survived without computers. It was quite eye opening for him.

After this, both kids declared they were starving, so we took a break for lunch. After lunch we waited for the train and the kids watched a whip demonstration. Unfortunately we weren't able to get on the first train that came and had to wait until the next one. This resulted in a major meltdown on the part of Melissa. I think she was starting to get tired, but Matthew was still going strong so I hated to leave just yet. I bribed her with some rice crispy treats and that appeased her somewhat. We rode the train around the petting farm and the Young house (neither of which we had time to see). At the Young house stop, a militia man boarded the train and sat next to Matthew with his rifle. Matthew was quite impressed and initiated a conversation about good guys, bad guys, and guns.

After the train ride we checked out the printers shop. The kids helped inked the lettering and press the paper. Matthew was given a print copy he made of the Declaration of Independence. He was quite pleased with this. We saw the bank and played with the scale and weights. After which we visited another house and decorated wooden toy pinwheels and then checked out the school house for a short lesson. Then there was the flag raising ceremony accompanied by rifles shooting blanks (again, Matthew was enthralled). Melissa on the other hand had just about had enough, but Matthew really, really wanted to participate in the parade scheduled for after the flag raising ceremony so I decided to try and appease the cranky 3 year old tyrant (at least until after the parade). We gathered to the wagons and the kids collected their lamb masks. It was a cute little parade with all the shops and houses sponsoring the wagons and costumes. We were part of Mary's little lambs and marched with a sheep, Mary, and a cart full of wool and woolen products. The kids were cute and seemed to enjoy waving at the crowds along the street.

At the end of the parade Melissa seemed spent, as was I. Did I mention that it was HOT? We'd been there for nearly 4 hours and so it seemed like a good time to head home even though we hadn't seen half of what the park had to offer. We didn't take a wagon ride, or pony ride, or miniature train ride, or check out the petting area, the blacksmith shop, the old ZCMI store, the watermelon contest, the candy pull, the candy cannon, the Young house, or many other little houses and shops along the way. It didn't help that we had to make three trips to the bathroom. You add a large pregnant woman + 2 tiny kids' bladders and it's a lot of trips back to the bathroom. Oh well, I figure there's plenty for them to go see another day. Hopefully on a less crowded day!

Despite being exhausted, Melissa was NOT ready to go home. So I slung her (kicking and screaming) over my shoulder and off we went to hike back to our car. Boy it was hot! Felt like 110 but I think it only reached the mid 90s. About two minutes into the car ride she crashed and slept the rest of the way home. Meanwhile Matthew thanked me for taking him and told me he had "lots of fun!" Awww. Makes me want to take him again, but maybe without his sister.

The Great Green Jello Festival

As promised a report:

July 19th:
Every year, our stake does a "Great Green Jello Festival." In previous years we've missed for one reason or another. Mostly because neither Jon nor I was particularly motivated to go to an outdoors jello festival in July- seemed kinda cheesy. This year we decided to check it out- primarily because the kids were climbing the walls and it seemed like a good excuse to get out of the house.

WOW, have we missed out in the past! We got there and they were serving pulled pork sandwiches, hot dogs, salad, chips, and homemade root beer. In addition there was cotton candy, snow cones, and lots of jello to sample and vote on. Not only that, but there were plenty of things to keep little people (and big people) amused. I was disappointed that I forgot to bring the camera to snap pictures of the kids. A great big bouncy obstacle course was set up, as well as an inflatable jumping thing, and a huge water slide. Melissa was unsure about the water slide. She begged to go up it, but once at the top was very unsure about going down. A bigger kid helped her up and then waited patiently beside her while other kids went down until she was ready to go as well. She sat at the top for probably 5 minutes. I don't know who the kid was, but he was sure a nice kid. Matthew had no qualms and was up and down countless times.

While Matthew spent the majority of his time playing on the slide, I took Melissa to get her face painted and to go "fishing" for some candy. The only thing we didn't hit was the rock wall. With me being nearly 9 months pregnant, and Jon with his separated shoulder; we weren't really good candidates for climbing. It did look fun though.

The next day both kids pleaded to go back to the "jello place." Next year, guys, next year.