Surviving the NICU- A Parent's Guide

I've pretty much summed up our experiences in the hospital.  Before moving on, I thought I'd jot down a few things we learned.  

1.  Get help!  

Whether you have older children at home or not, you need some extra assistance.  It is not the time to be Supermom or Superdad.   When people ask if they can help say YES!  If you're not sure what you need yet, let them know you appreciate the offer and will get back to them.  Look for help from your family, friends, neighbors, church, and social groups.  People really do want to help; it's a way they can show love and friendship.  That said, most people do not know what to do.  Here are some suggestions:

Meals

Childcare for older children

Errands

A friendly ear to listen, or shoulder to cry on

Perhaps a ride up to the hospital- we didn't ask for this, but it was a lot of driving and occasional company would have been nice.

Laundry or housework

Yard work-  many things take a back seat during times of crisis.  The flowers and vegetables are two of those things.  

Someone designated to take/field phone calls

And I'm sure there are others...

2.  Get a hospital-grade breast pump

If planning to planning to provide breastmilk for your baby you'll want access to a quality pump as quickly as possible.  I already had a hand pump, but that was insufficient for all the hours I was away from the hospital.  Plus it didn't do nearly as good a job as a quality electric pump or a hungry baby for that matter.  I rented a hospital grade for a brief while then bought a Pump In Style which worked very well.   

3.  Essentials for the hospital

I packed a water bottle, a camera, a notebook for jotting down information from the doctors or nurses, journal articles relating to neonatal diabetes, a laptop, a granola bar, extra nursing pads, extra regular pads (I was still recovering from childbirth after all!),  hard candy, labels for Bean's milk containers, a sharpie, some money, and the Wall Street Journal or sometimes a book.  It was a pretty full bag!

4.  Rest, rest, rest!

Very, very tough to do, but vital.  Rest is especially important when recovering from birth. I found that I needed some periodic naps.  A nurse once commented, "Oh when he comes home you'll wish he were back in the hospital at night so you can get rest."  Uh, no!  I looked at her like she was out of her mind.  The pumping in the middle of the night and all of the worry wasn't exactly restful as it was.  When he did come home it was a brutal sleep schedule, but not once did I wish him back in the hospital.  

5.  Take advantage of any sibling classes/activities at the hospital

They had a great program where older siblings could decorate their own cloth NICU baby with the wires and tubing to match their own baby brother's or sister's.  Then there was a little class taught by an RN about the machines and equipment around their brother explained in simple, not scary terms.  They also got to decorate a framed picture of baby Bean.  The hospital was very sibling friendly and there was a wonderful playroom they could visit, and of course they got to see baby Bean a few times.  My older two children pretty much took everything in stride thanks in part to these programs.  

6.  Hold and rock your baby as much as possible

Spending time rocking, holding, nursing, or even just touching gives a smidgeon of normalcy in a difficult situation.  I found rocking Bean a great way to soothe both of us, and I could close my eyes and imagine the hospital surroundings away.  

7.  Ask questions!

The nurses, nurse practitioners, and doctors were appeared very happy to answer questions or address concerns we had.  We found that even if we missed the rounds, a doctor or nurse practitioner would be more than willing to come to the bedside when they had a free moment to talk to us.  While away from the hospital, call and ask about your baby.  It's not the same, but will give you some peace of mind hearing how things are going.  

8.  Along the lines of #7, Educate yourself!

For the most part the more I knew the less scary and more confident I felt.  I read articles on neonatal diabetes, both permanent and transient since we didn't know right away which he had. I also read about managing diabetes in young children and learned about how the pancreas works, the KATP channel, different kinds of insulin, how to administer shots, A1Cs, glucometers, and on.

9.  Sometimes a little company is nice

Most of the time I was quite content just being with Bean, but occasionally it was nice to have a friend there in the hospital to talk to as well.  

10.  Take some time away from the hospital to do things you enjoy.

My husband and I went to a restaurant for a lunch date.  It was nice to feel the summer breeze and just talk.  Another time my husband went up to the hospital while I spent time with the kiddos, made them pancakes and read stories.  I also enjoyed soaking in a hot tub after a wearying day.  

That about exhausts what I can think of....

I'm sure others can think of more.  Anyone?

Home

That Sunday, August 31st I wrote:

A Second Birthday

Bringing Bean 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.

Bean 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 Bean is home and I am at peace.

That's not to say it was stress free by any means!  Every time he fussed or slept longer than we expected we wondered if he was too high?  too low?  or perhaps this was just normal behavior for him?  That poor child got poked very frequently.   Thankfully we had access to the diabetes line for any questions.  Each morning for the first few days home we'd call in his numbers too for the endocrinologist.  

Coming Home

That Saturday we arrived before eight so as to be there to give Bean his morning dose Lantus.  The pharmacist said we could always practice with saline on him if it was too early, but why give him more pokes then absolutely necessary, we figured.  

I gave him his shot.  Not my favorite thing to do, but I was glad to have the nurse there to supervise at least once.  Since confidence in drawing up insulin and giving shots was a necessary prerequisite to Bean coming home, we were prepared to do it.  

The discharge process was quite long and Jay had to leave to speak at a conference part way through.  When he got back, the pharmacist showed us how to use glucogen.  Eeep.  We were really hoping to never need that... the problems with hypoglycemia seemed terribly frightening.  She gave us some more information on Lantus and Humalog (the quick acting insulin to be used to correct highs).  Bean's Humalog had to be specially diluted twenty times by the pharmacy so we could actually draw it up in a syringe.  Still he didn't need very much, so that is where the 1/2 unit markings on the syringe came in handy.  

In addition to the diabetes education, we went through the standard NICU discharge education.  This included an infant CPR video with a doll to practice on.  It was actually pretty well done, and we got to keep the doll and video.  The "purple crying" video was pretty disturbing though.  I just can't wrap my head around someone hurting a baby due to crying, and we had two very colicy babies prior to Bean.  Yikes.  The rest of the education was given Reader's Digest style by the nurse.  This is our third baby after all- we've picked up on a few things by this point.  :)

Then there was some confusion with the pharmacy so we had to wait for them to mix up Bean's insulin to take home.  This took several hours.  Jay and I just rocked Bean, took some pictures, and waited.

Around six that evening we finally got the green light to head out.  Bean's nurse walked us to the car with all of his supplies.  Hooray!  We drove home just ecstatic to have him with us.  The weight of responsibility hit shortly after we arrived home- just in time to check his glucose and administer his evening dose of Lantus.  We were now in charge of monitoring his blood glucose at least every three hours around the clock.  On top of that we were to give him sodium four times a day mixed with fresh milk to get it down.  

Daunting?  You bet.

Friday, August 29

I'm almost to the end of our NICU adventures...

That Friday my cousin came by to visit in the NICU and have lunch.  It was nice to have periodic visitors in the NICU while spending time with Bean.  Bean, for his part slept most of the time so I enjoyed company.  After lunch I wrote:

Rocking My Baby

Came back from lunch today to find Bean'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. Bean and I both approved of her. While some nurses are all business, others really seem to enjoy the little ones.

Endocrinologist

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. Bean has been fairly stable, leading the endocrinologist to believe that Bean 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.

I wrote some other interesting stories, but they are more regionally specific, so I regret that I can't include them...

Interesting people at (regional children's hospital)

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 the children's hospital 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?!  Very cool.

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."
!!!


Several days ago, when I was in the mother's room pumping, Jay recognized a woman passing in the hallway. "Hey, I think you delivered my son nearly 6 years ago at (a nearby city hospital)."
"Yep, that sounds about right."

Bean continued to impress with his weight gain.  Every morning at rounds the bedside nurse would state how many calories he'd consumed (not including the two or three nursing sessions) and the doctors' eyes would pop in surprise.  Bean was doing his best to make up for lost time.  Minus the diabetes I suspect he'd have been a 9+ pound linebacker at birth.  

Weighed him again tonight...
and he's now just over 7 pounds. (3.18 kg)

That's over a pound since previous Friday!

Good News!

But first more glucometer woes:

Glucometer Saga Part ??

After lunch I came back up to feed Bean. 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 asked what was going on...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 Bean's nurse practitioner who clarified things and wrote a clear (I hope!) order in his charts. Bean'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 Bean 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...

By Thursday August 28th the news was looking very good:

6 lbs 13 ounces

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

Bean is off of the glyburide and has been for 24 hours. The doctors (and Jay, who put the data in a spreadsheet and graphed it) didm'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 personally I doubt it.)

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!

Diabetes Education

Wednesday we had our first diabetes class.

August 27th Jay wrote:

Poke poke

Bean'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 Fay (who didn't want to appear rude by leaving before she got back) and found someone who did. Instructor located, I went and found Fay 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 Fay 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. Fay almost wondered why Bean 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 Bean 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 Fay.

On the "hospitals make you count your blessings" note: as I left, I saw a little girl Missy'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.

Both of us felt much more optimistic and cheerful after the class.  A very good sign indeed!

A Tough Day

By Tuesday, August 26th Bean had been in the hospital for 11 days.  Emotionally and physically it'd become very draining.  Add that to some changes that occurred Tuesday night, and it was just overwhelming.

Unhappy Mama

This is a pity post; you have been forewarned.

Took the kids to see Bean 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 Bean have had no problem, and the lab reader requires much more blood than the glucometer. Bean 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 Bean'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. Bean 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 Bean. 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?

Bean 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 Matt and Missy when I'm at the hospital. I should be there to pick Matt up from kindergarten and hear all about his day when it is fresh on his mind. I should be snuggling more with Missy 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.

[Jay'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.]

At the Children's Hospital

Having a child in the hospital was a real eye opener for Jay and I.  We saw things we never stopped to consider before...

August 25th Jay wrote:

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.

And now that we've seen some of these things we feel compelled to help out in whatever small way we can.  

Busy Day

Monday was a very busy day. Matt started kindergarten, and we were back and forth to the hospital.  Thanks to Dr. Z who got the ball rolling, we had our blood drawn for genetic testing.  There aren't very many labs that can do the specific testing that we needed, so it was a bit of a trick to find them as well.  I ought to put in links to the labs in the sidebar that deal with testing for transient and permanent neonatal diabetes...

To start with they were going to look for abnormalities on the sixth chromosome, since roughly half of cases are caused by a duplication on the 6q24 region, or a second paternal chromosome (and no maternal chromosome), or rarely an unmethylated maternal allele (so the mom's 6th chromosome is switched on when it should be off).  The other half of cases can be caused by a myriad of genetic glitches.  I'll go into more detail in a future post.  It's really interesting stuff.

August 25th:

At the Hospital

After dropping Matt off at kindergarten, Jay 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 (the regional children's hospital), request Lou. It took her just a split second to get the needle in Bean's vein- no hesitation, no probing. Then she drew from Jay 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! Bean continues to impress his nurses with his appetite (that's my boy!). Jay graphed Bean'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

Matt 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 Matt 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. Missy 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, Jay 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 Bean 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.

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.

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.  

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.

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.

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.  

Monday, August 18th

Jay's observations from the morning rounds:

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.

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.

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?!"

"Yes!"

"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.

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.

Indeed.  

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.

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.

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:

Update
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.   

Jay:

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.