Tuesday, December 30, 2008

Saying Goodnight

Saying goodbye to Bean each night was very difficult.  Friends of ours who'd had a premie frankly told us that they cried as they left their baby every time.  They are not super sentimental people either.  It is startling how fast you fall in love with a baby.  Right from the get-go Bean was an important part of the family, and it was heart wrenching to leave him, even though we knew he was in the best possible place for getting well.

August 22nd:

When Bean 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.

It was made even more challenging because we had two little ones still at home who needed their mother and father's attention as well.  

Jay wrote on August 24th:

Quick update

Bean 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. C) 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. Fay took the older kids for some Mommy Time so I went up with Grandma to see Bean 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 Fay's turn to go up.

Fay pointed out the other day that little Bean's already had far more needles in him in his two weeks of life than she has had in almost thirty. Poor kid.

Saturday, December 27, 2008

Life got busy

But I am back and will continue with Bean's story where I left off.  

That Friday Bean turned 2 weeks old.  His blood glucose continued to swing rather wildly so he was still far too unstable to take home.  Rarely, rarely neonatal diabetes is associated with neurological problems and heart defects, depending upon what specifically caused the diabetes in the first place.  At this point we didn't know so the neonatologist leaned on the side of caution and ordered the ultrasounds just in case.  

At two weeks of age I wrote:

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 today...so 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.

Bean 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 Bean.

Later I delved into some research and read about the "Very Bad" things that could happen.  I was glad to learn about it after the normal results came back and not before.  Most of the time though neonatal diabetes presents alone or with minor things like macroglossia (big tongue) or an umbilical hernia.  

Sunday, December 21, 2008

The news continued to look good.  Once Bean was started on the insulin, he rapidly improved and filled out.

Wednesday, August 20th I wrote:

And Odds and Ends

Bean 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...

That evening I returned to the hospital:

Poor Baby!

When I came up to see Bean, 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.

Thursday, December 18, 2008

Introduction of Lantus and a Glucometer

I wrote:

Bean Update

Yesterday afternoon, the doctors decided to try the long acting insulin, Lantus. As it was described to me, the long acting insulin acts kind of in 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 Bean 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!

Jay wrote:

Short update

I went back to the office yesterday so this is second-hand via Fay. I'll just give a summary and Fay 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 Bean 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.

Bean continues to eat well.

Tuesday, December 16, 2008

Nurses on both ends of the spectrum

Bean had some nurses that were just fantastic. Only one caused alarm for Jay and me:

Tuesday, August 19

Bean gets an incompetent nurse

Bean'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.

Fay and I broke for dinner at 9, and when we came back up Nurse Incompetent was poking about in poor Bean'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. Fay has never seen the A-Team. Makes me feel old.) But as the IV team was about to poke him again, G 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. Fay didn't think it was worth complaining about for tonight's shift but once was more than enough.

(Later, after taking Fay's expressed milk to the fridge, she got out formula to feed him. Fay caught her and reminded her to use the breast milk. This woman just did not bring her A game tonight.)

Perhaps it is trivial, but this nurse also did not roll the diaper down away from his umbilical cord and instead left it covered up.  I changed Bean twice and rolled it down after both times she'd changed him.  Come on!  The diaper absorbs urine- not something you'd want right next to an umbilical cord!!!  It's supposed to be kept clean and dry.  CLEAN and DRY!  Ugh.

On the other hand I'd noticed some exceptional nurses too:

Some Pretty Special People Work in The Newborn Intensive Care Unit

Take for example G, 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 Bean each night, but at least I know there are good people watching over him.
Jay and I made it a point to meet all the nurses that took care of Bean at some point during their shift.  We wanted to be there to hold him often, to see that things were going well, to learn how to manage diabetes for when we would take him home, to clarify his particular care (this did become important later on), and to advocate for him when necessary.  

Sunday, December 14, 2008

Monday, August 18th

Jay's observations from the morning rounds:


Back at the NICU after staying away for a couple days because of my cold.

Little Bean'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 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. C, 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.

We did speak with Dr. Z that evening, but Bean's case was a new one to all the students, doctors, and professors there.  No one had any particular new insight on treatment, but glyburide (a sulfonylurea drug) was discussed as a possible therapy.

I was greatly pleased with the lines coming out of Bean.  I took it as a positive sign that Bean was getting stronger and more stable.  

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 Bean only has some monitors and oxygen on. Hooray!

I debated with myself on whether or not to post pictures in the interest of blogger anonymity.  For obvious reasons we prefer some privacy for our family.  But I really felt that we needed faces connected with our story, so here goes:

Bean with his Daddy.  
(Taken Monday morning)

Me Cradling Bean

We enjoyed chatting with Bean's nurses during slow times.  Most of them were absolutely fantastic and had interesting life stories to boot.  We are so very grateful for the competent and compassionate care they provided.  

Jay recorded one such conversation:

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

Fay started a conversation with Bean'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 Fay.

"Actually, you're right," said the nurse.

Saturday, December 13, 2008

Grow Bean, Grow!

Despite his blood glucose still swinging up and down dramatically, Bean had enough insulin to start putting on some ounces.  Sunday Jay was still feeling a touch under the weather, so he stayed away from the NICU.  Instead he took the kids to church while I spent time with Bean.

Sunday, August 17
Gaining Weight
Bean 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, Dr. Z, remarked several times on how great he was looking. Grow Bean 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.

Friday, December 12, 2008

The Endocrinologist

Saturday was a busy day.  I also met one of the pediatric endocrinologists following his case.  I wrote about the experience, but keep in mind I'd only just learned about his diagnosis and didn't know much in the way of details yet...

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?..."

"Fay." 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 Bean before they get involved.

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

Apparently Bean'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 Bean's health before we brought him in to the (regional children's hospital). 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, if the diabetes does go into remission, he's more likely to develop diabetes later in life...

From what I gathered, there are still lots of questions, but the focus right now is to control Bean'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. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1847805
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.

Thursday, December 11, 2008

Breast pump saga

Friday night I thought to ask about renting a breast pump for when I wasn't at the hospital.  Being able to pump or nurse only when at the hospital wasn't going to keep up my supply for very long.  There too many 6 to 8 hour breaks spent traveling or at home.  Fortunately "the girls" produced an overabundant supply and there was a nice cache of milk growing in the freezer for Bean.  Still it was quite uncomfortable to go for so long without expressing milk and I really didn't want to lose that supply.  Giving Bean milk was one of the few things I could do for him.

We were given a sheet of paper listing pump dealers, medical supply offices, and lactation stores with phone numbers in our area.  Simple right?  Trying to track someone, anyone down on a Saturday proved quite tricky.  Those I could reach didn't want to talk with me preferring to speak with a nurse or doctor, or insisted on a written prescription from a doctor (no, a nurse practitioner would NOT do) to be faxed in with insurance information- and then your insurance will probably not cover it anyway.   So WHY are we going through this rigmarole?  We'll pay cash, just let us have the pump!  Please?

Jay summed it up:

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.


After jumping through plenty of hoops, it was nice that the company delivered the machine right to our door Saturday evening.  The technician from the medical supply company remarked that he didn't typically deliver pumps.  He was a young guy and seemed rather uncomfortable setting it up and describing how the thing worked.  Poor guy!  

Pumping at home offered sweet relief.  Now I could bring in more milk for Isaac and keep up with his growing demand.

Tuesday, December 9, 2008

Back at the NICU

After resting at home, I went back to the hospital:

"Little Chow Hound"
That's how Bean'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 afterwards 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.

The next day I caught the doctors during rounds and the news was a mixed bag:

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:

Bean'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:

Bean 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 the (children's hospital) are trained in and they aren't comfortable with it. The only other option is tube feedings, and I can't imagine Bean 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.

And I wrote a bit about all the wires in little Bean:

What are all those tubes and wires?

You can't tell from the previous post's picture, but Bean 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 Bean 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 Bean is doing.

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

Sunday, December 7, 2008

Friday and 1 week old

We drove home with an empty car seat in the back seat. 

Mom took the other two kids and kept them busy so Jay and I could rest for a few hours.  We explained to them that their baby brother got sick and was in the hospital, but he was there so he could get better and come home.  They took the news pretty matter-of-factly, and weren't too concerned.  

I wrote:

Called the NICU, Bean'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 Jay wakes up, we will head back, and I will pump some more for Bean.

Jay wrote:

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 Fay 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. "Transient 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 wheeled 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.

Actually the doctors were hopeful it would turn out to be transient neonatal diabetes, but we had a roughly 50/50 chance.  Unfortunately there isn't a way to determine clinically which it is.  That's where the genetic testing comes in...

More Jay:

A couple things I haven't mentioned

Little Bean'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 Fay gets to feed him.

Unfortunately after feeding him his glucose jumped up to 280, the nurses gave him a shot of insulin, but it shot up to over 400.  I think because he didn't have enough subcutaneous fat to disperse the insulin properly.  This kid had no fat to speak of.   


Some negative progress

Baby Bean'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 Fay 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.

Fortunately Bean was able to latch on and nurse right where we'd left off without any difficulty.  He was placed on a three hour feeding schedule with glucose checks before eating.  It was so nice to rock and nurse him.  It brought a smidgeon of normalcy despite all of the tubes, wiring, and worry.  

Saturday, December 6, 2008


The doctors in the Emergency Room call up to admit Bean.  There's room in the Neonatal Intensive Care Unit.  I carry baby Bean and a nurse and assistant each pull monitors beside us.  Along the way the nurse comments on how very rare it is for an infant to be admitted to the NICU from the emergency room.  Most infants come directly from other hospitals.  Once we arrive to the NICU floor, we are greeted by a large team that whisks Bean away.  

Jay and I were then ushered aside for the NICU orientation.  It is about 2 in the morning.  While the receptionist goes over the ins and outs of the NICU I can hear Bean crying over the intercom.  My heart just about breaks.  It is a terrible thing being unable to comfort your child, not knowing what exactly is going on, and being so helpless to do anything.  

Finally we are allowed back.  He is in an isolation room.  It's a room with glass on one side, walls on two others with a windows looking outside and a sliding glass door on the fourth side.  He is placed there since he came from home and they don't know whether he carries any infections or not.  When we enter, there is a crowd of people by his bed.  Bean is undressed down to his diaper and the warmer is turned on.  The nurses have started an IV of insulin, he is wearing a nasal cannula for oxygen, they have inserted an artery line through his umbilical stump, and they are attempting for the second time to place veinal line also through the stump.  Bean is very distressed and is crying and flailing wildly.  This is the most animated we have seen him in two days.  Jay once again stays with him.  He offers Bean his thumb to suck on.  I am unable to stay very composed, so I excuse myself to a rocking chair just outside the room.  I rock and silently weep.  A nurse taking care of another infant sees me and compassionately brings me a glass of water and some tylenol for my pounding headache.  

The line is inserted and they call radiology to see that it is placed correctly.  Meanwhile his doctor, a Fellow training in neonatology beckoned us to a room.  Dr. Z gets some family and prenatal history.  The history is pretty mundane.  My pregnancy was very healthy and all of the tests came back normal.  Likewise the family history is without much note.  There is some type I diabetes but no diabetes in infants.  The doctor then explains that she's never seen diabetes in an infant before, but she has done some quick research and it looks like Bean has what is called neonatal diabetes.  This is different from type I or type II.  There is a genetic component and depending upon what happened it could be permanent or transient.  If transient, it could disappear within a year likely much sooner.  This is the first bit of good news that we have heard all evening.  However, it is not possible to clinically diagnose which type he has so we will have to wait and see.  Dr. Z is extremely kind, and I am forever grateful for her compassion in the wee hours of that morning.  Jay and I were both quite shell shocked.  Right now the plan is to continue the insulin until his glucose reads below 200 mg/dL, at which point the will stop the insulin allow him to eat and see what happens.  

Since there are no beds, they offer to let us rest in the visitor's room which has 1 couch.  Jay beds down on the floor while I track someone down to ask about pumping.  My breasts are two hard rocks at this point.  A nurse is snagged who grabs a pumping kit and shows me where the room is.  I've never used a hospital grade pump before and she explains the operation and fine points of pumping.  Left alone I pump 8 ounces of milk easily which I label for Bean and head to the freezer.  One the way I hear, "Fay!  What are you doing here?"  I look over and all I see are a pair of eyes.  The rest of the woman's face is covered by a surgical mask and hair covering.  My mind was elsewhere and I didn't recognize her at first.  She is my neighbor!  In addition we both work with a group of girls at church and sometimes combine our groups for activities.  She does not work in the NICU, but had just come up from surgery with a patient.  I explain that Bean has been admitted.  She is finishing up paperwork and I drop off the milk.  I return to the visitors room where Jay is attempting to rest.  There is a soft tap at the door and our neighbor enters.  She is an angel that night and listens to my concerns while offering comfort.  

Jay and I rest fitfully for about 2 hours.  I am unable to actually sleep or even clear my mind, but just lying down is helpful.  By now it is morning, we go back to Bean's bedside.  The doctors want to obtain consent for a PICC line.  

Jay wrote:

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, Bean is the big one of the group.

Bean was sleeping in his bed.  We must have looked a little worse for wear, because his nurse practitioner advised us to go home and get a little rest.  They'd call us if anything changed.  This sounded like good advice so we made the long trek back to our car.  On the way home Jay made a few phone calls to let others know what was going on.  

Friday, December 5, 2008

The ER

Thursday baby Bean was excessively sleepy.  He was extremely difficult to rouse.  In addition, he was not filling out at all and started to look gaunt.  My mother looked at him and thought he looked like an old man in skin that was too big for him.  I will paste in some of the things my husband and I wrote as it occurred throughout the blog.
Thursday, August 14
A Sleepy Baby
Bean 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. Bean also does not root and act hungry like Matt and Missy 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...

I weighed him at the post office and was horrified by how much weight he'd lost.  He was making plenty of diapers, why was he losing weight???  I called the after hours pediatrician, midwife, and my father who is a doctor for advice.  In my heart I felt like something was really wrong...  He wasn't looking or acting like a newborn should and trying to get him to eat wasn't working.  

Jay wrote:
I called home as I was leaving the python user group. Fay'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 Fay had weighed little Bean 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 Fay had packed and headed up to the children's hospital downtown. 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. Fay 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 Fay 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.

I wrote a few days later:
I think the Lord has been watching over Bean and our family.

Originally I planned on weighing Bean 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.

Jay 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 Bean and me a blessing. Right after the blessing I told Jay that we needed to go NOW to the (regional 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.

Jay 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, Bean would have been transfered to the (regional children's hospital). So just as well we hadn't wasted time.

I cannot recall ever being more sick with worry or feeling so helpless.  In the ER there were murmurs of diabetes.  During the lumbar puncture done to rule out meningitis, I stepped into the hall.  Jay stayed with Bean to offer what comfort he could.  I was a coward and just couldn't bear to watch.  Listening to little Bean cry and thinking about the ramifications to diabetes, I just broke down.  Would little Bean be all right in the end?  How, oh how, do you deal with diabetes in a newborn???  

Thursday, December 4, 2008

Growing Concern

Tuesday I took Bean to the pediatrician.  He had a clean bill of health and had even gained an ounce from the day before, at 5 lbs 8 oz.  Bean was slightly jaundiced, but not bad, and the pediatrician wasn't at all concerned.  He advised frequently nursing Bean to bring up his weight, but that was my plan anyways.  

Wednesday Bean started getting sleepy.  In the wee hours of Wednesday morning he slept for five hours straight.  I woke up with a start when I realized he hadn't roused eat yet.  Unprecedented for one of our newborns, but still within normal for a newborn to have one longer stretch of rest.  Still, I felt he was too small to do that just yet, so I'd wake him if necessary to eat.  During the day he continued to act sleepy, but he would agreeably wake to nurse and would nurse through a milk letdown.  He also made plenty of diapers... especially wet ones.  I figured he was okay, but I'd stay in bed with him that day to ensure that he got the calories he needed. 

The midwife called, I assured her that we were fine and my mother would be flying into town later that evening.  She decided to go ahead with her trip plans and asked me to weigh him either at the post office or the doctors office sometime later that week.  

He was such a tiny baby, and he felt so light and fragile in my arms.  

Wednesday, December 3, 2008

The First Few Days

Baby Bean was born on an auspicious Friday night.  He was alert and active as a newborn should be.  Every few hours he nursed.  Everything seemed perfect.  He had a great, quick birth, his newborn exam was normal, Bean knew how to nurse well right from the get go, and his diaper output was fine.  We were totally in love and thrilled with our new addition.  

Sunday my milk came in and I figured Bean would rapidly fill out just as my older two children had.  

Monday our nurse midwife returned to check in on us.  Bean was weighing in at 5 lbs 7 oz, but we weren't too concerned because it is normal to lose some weight at the beginning.  The midwife poked his heel for the PKU test.  She then mentioned that she was thinking about taking a trip out of town but didn't want to go unless we were comfortable and settled in.  She'd call before she left to see that things were going well.  That sounded fine with us, why wouldn't they be going well?  Monday I also called the family pediatrician's office.  Our pediatrician was out of town, but we could come in to see another doc in the practice on Tuesday.  The visit was primarily to get him in the system, and I wanted to go for a weight check too since Bean was so small.

Tuesday, December 2, 2008

The Beginning

We waited nine months dreaming and wondering about you, little one...

After a normal pregnancy and labor we welcomed baby Bean into our home. I birthed him standing up and proud papa, Jay, caught. He was beautiful with bright alert eyes. Born at home with a midwife, we celebrated with chocolate birthday cake. His 5 year old brother, Matt, was delighted by his new baby sibling. "I told you it was a brother! I knew it! I just knew it!" Pleased as punch Matt cut the cord and made the announcing phone calls to family.  Our certified nurse midwife checked all the newborn parts, reflexes, and listened to his heart and lungs.  All systems go!  We snuggled our new addition, and then Jay tucked the older little ones in much past their bedtimes. We were all too excited to sleep right away, but eventually we rested after a glorious birth.

The only thing a little odd was his size. Our other two children were much bigger, and I couldn't understand why baby Bean was so small. He weighed 5 lbs 15 oz despite being a full term baby. Odd, but then he appeared to be healthy and vigorous...