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.