Baking Cookies

Someone wasn't particularly interested in making cookies initially, but once she tasted the dough that was a different story!

She passed!

We are done with the medicine and blood draws unless she sleeps 10+ hours (I wish!). Just got home and am so thankful.

Halfway there

Blood draws
8 am: 95
10 am: 84
12 pm: 83

They will now do them every hour. E is sleeping now but is pretty fussy when awake. A lot of swaying and snuggling from us both.

Made it through the night

E and I made it last night with our roommate and his mom who were very quiet. Her blood draws through the night and this morning were in the 90s. Her last dose of medicine was yesterday afternoon. So that is good.

Poor little lady had her last meal leading up to 6 am and is now sleeping. They will test blood sugars every hour or two through the fast until 6 pm. We hope she can do it to put this chapter behind us.

Let the process begin

We are at the hospital and E has her IV in to get fluids tomorrow during the fast. She had her last dose of medicine this afternoon and will begin the 12 hour fast tomorrow at 6 am. I will be spending the night with her in a shared room. Wish we had our own room!

Three bells

Never heard from admitting yesterday so called today and we need to be there by 3 pm. Thank goodness for Grammy and Pappy to hang out with K this evening.

Just downloaded Blogger app for the iPhone so updates will be easier. Too bad this app wasn't around when we were in the NICU!

Tomorrow is the day

E will be going to Children's sometime tomorrow afternoon (still waiting to hear back from admitting with an exact time).  They think she will be there for about two days by the time the medicine gets out of her system and they can begin the fast.  Will post more as we have more updates.

Back to Children's

Today at E's endocrinologist appointment, they finally gave us the results of her genetic testing which showed no genetic abnormality causing her HI (this is a good thing).  The doctor thinks she might have transient HI which means it is temporary (caused by some sort of stress at birth) and could eventually go away.   In order to figure out more about her type of HI, the doctor wants to hospitalize E again to wean her off the medicine all the while closely monitoring her blood sugars.  Then when she's completely off the medicine, they would conduct a 12 hour fast to see how she performs.  My understanding of this process is basically to see if she still needs the medicine to maintain good blood sugars.  Sad she has to go back to the hospital, but it's the safest place to take her off the medicine.  She would not be in the NICU again rather she will be on the endocrinology floor where fasts like this take place quite often and the nurses are familiar with the procedure.

Overall the doctor is very happy with her blood sugar numbers. Instead of delaying things by continuing to give her medicine that she eventually outgrows in a few months due to weight gain, they want to investigate her condition further at this time with the hospitalization.  She also slept last night for five hours which made the doctor nervous since she hadn't eaten for 5 hours, but that is something a baby her age will start doing.  I did test her sugars after that 5 hour stretch and it was a 101 so it was fine.

I go back to work next week Friday, Sept 30th so the doctor is trying to get this process in and completed before I go back to work.  We don't have confirmed days yet but the average stay for this is around three days.

The only side effect E has experienced from the  medicine is the darkness of her hair and hair growth.  The doctor told us this would happen but it's pretty noticeable for a little baby which you can kind of see in the picture below.  She has it on her forehead, sides of her cheeks and a bit on her arms and legs.  Plus the doctor said the darkness of the hair on her head could also be effected by the medicine and could change if she ends up off the medicine.  The process of hair loss could take up to 5 months once she is weaned off diazoxide.  Thankfully this is the only side effect she's encountered since the other possible side effects can be pretty nasty.

Upgrading our Ride

No we didn't get a beautiful new car, rather we upgraded our single stroller to a double.  At least it's red!  It actually isn't as big as it looks and it easily fits through a regular sized door.  Not many double strollers can do that and it was important to me that ours does! 

I hold her

K definitely likes to help with her sister and we often hear the following: I burp her, I feed her or I hold her.  I won't post the pics of K nursing her baby so not to embarrass her in her college years.  :)  So here are pics of K holding E.  The first picture seems pretty harmless though she does have a vice-like grip on her!

And then E starts to cry and K clearly is frustrated.  Here is when she would be saying (or shouting rather) Don't CRY Ba-Ba-Beth.   Hopefully this is the start of a long friendship between these two sisters!

Two months old

Knocked out

That first round of shots will really knock a girl out.

Smiles!

E is at that fun age where she starts smiling.  It's so nice to get a little feedback from her with a smile!

Isn't the double chin ridiculous?  She really likes eating!

Reading with Big Sister

K takes her role as big sister very seriously and is reading to E in the bouncy chair.  She is very protective of her though isn't always completely gentle herself with her!  We're working on that.