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.
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.
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.
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.
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.
And Odds and EndsThat evening I returned to the hospital:
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...
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.
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!
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.
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.)
Some Pretty Special People Work in The Newborn Intensive Care UnitJay 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.
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.
