Notes from the Big House (otherwise known as the NICU)

Hi!
This is Jack. I figured that with all the hubbub about me, I'd add a little something along to this. I type really well for my age, Mommy says, except that it takes me so long because my hands aren't very long yet. She also says i have to clean up my own drool on the keyboard.

I'm doing pretty well, I guess. I have a nice comfy bed in a quiet room. My roommates are Cole and Amelia, they're pretty groovy. We all make our monitors go off around the same time. Mommy calls this "Symphony of Dings." I call it fun.:)

They've still got me on all sorts of medicines-- i've got my vitamins, my potassium and sodium, some caffeine (Mommy says Daddy needs that!), this stuff called Lasix (they give me that and I end up getting a new diaper, heheh), MCT oil to make me get bigger (Daddy calls it my fried chicken), Reglan and Zantac for when my tummy gets grumbly, and some other stuff that I don't remember right now. I also get breathing stuff to make me all nice and clear, which is important for when Mommy tries to feed me.

I wanted mostly to thank everyone for all the stuff they've been doing for Mommy, Daddy, and me. I love my snuggly warm hats, and everyone says I'm the best dressed baby in the nicu! I have my Halloween hat, my white snazz-o-rama hat, and my comfy blue hat that Aunt Betsy says makes me look like a snork. (Amelia says it's all sorts of hot though, so whatever a snork is, I guess I don't mind)

My Grammas got to hold me last weekend, that was kind of neat. I wasn't sure how to act, though, so I ended up pulling my feeding tube out when Gramma Kerry was holding me, and then I just forgot to breathe when Gramma Terry was holding me. I was just so excited, usually only Mom and Dad hold me, and now all of a sudden I get all sorts of new snuggles!

Today Mommy introduced me to Ms. Aime, she was really nice. Mommy says that she has a little girl who was in here, just like me, only awhile back. She says that if Ryleigh can do it, I can break outta here too. When Mommy came back from having lunch with them, she was in a really good mood, and I got extra happy snuggles. I love snuggles!!!

Daddy spent sooo much time holding me tonight!! I was a little squirmy, but that's only because I had to get comfy. I was enjoying it, Daddy knows exactly how to hold me so that I don't get a tummy ache during my feeding, and so that I can look around and see everything, too. After awhile, he let me sprawl out on his lap. I was loving life!

Ok, I've gotta go. Mommy's gotta sneak me back to my crib before the Ms. Nurse Stephanie notices I'm gone. Bye!!

Behold!!

The fat Buddha Baby that is Jack!! He's now *trumpets blaring* FOUR POUNDS!!!!!!


WHOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!


that is all. Please continue with your regularly scheduled program.


**this message brought to you by the letters M, C, and T, the number 4, and a very VERY happy momma**

Movin on up, to the back room

That's right... Jack's now sitting pretty in the back room, behind the nurses. We're really happy he got moved back there, it's much quieter and he'll be able to rest easier. We spent our first night in there last night. It was very nice, and we like the thought that Jack gets to hang out with his friends, JD and Cole, who are just 4 days older than he is, and about the same gestational age.

The boy is getting HUGE!! He's hit 3 pounds, 14 ounces! They probably put him in the back room to avoid smaller babies disappearing under Jack's watchful (and hungry) eye. The weight gain may slow somewhat if he ever decides that he wants to nurse on a more full-time level. So far he's been rather slothlike, with five minutes here and there. We're still working on it, though! Feedingwise he's up to 30 ccs every three hours.

The laptop has died, and until Sonnet gets a little more computer savvy, it's going to take a bit to get the pictures up. Sorry for the delays!! Email Sonnet, she'll send them to you personally. She's hoping to get them up and working in the next couple days.

Special Hoorays and Congratulations to Lori and Dave Earnest, who welcomed Caylie Rose into the world on Monday, October 23rd. Yay!

Today was a very good day.

As the subject says, today was a very good day. One might say excellent, bordering on sublime. But then you, dear reader, would probably expect perfection. What we had, while near it, wasn't quite perfection, if just because he's not home yet. But, as it's quite early in the a.m., and Sonnet hasn't controlled her babbling reflex, let's get to the fun.

Jack is now quite happy hanging out in his open air crib. He's proven that he can maintain his temperature, and a side affect of that is that Sonnet and Matt can now hold him almost anytime they want to now. Now that this has happened, they're able to do something they've been wanting to do since the beginning -- let the grandparents in on holding them. Grandma Kerry was able to hold him Saturday, and he was so good, he slept for awhile in her arms. Then he came back to being Jack and pulled out his feeding tube so we had to put him back. Grandma Terry looks forward to holding him today, Sunday. We'll post all the pictures on Sunday night, for all you Jack Junkies to get your fix on Monday morning. :)

Matt and Sonnet went back for a late night Jack fix Saturday night. They ended up staying until about 12:30a.m., but it was well worth it. Matt got to hold him for awhile, and Sonnet worked on nursing him for awhile. He did pretty well- nursed for a good ten minutes before deciding he didn't want anymore. Then they got to help with his care-- they were responsible for taking his temperature, changing his diaper, and getting him ready to get weighed. They also got to pick out his outfit for Sunday, which was really nice (You never realize just how warm and fuzzy picking out your child's outfit can be unless you're not usually allowed to).

Both Matt and Sonnet went home, sleepy but quite happy, Saturday night. This post is mostly to record that... while there are some really hard moments in the NICU, there are some moments that are all the sweeter because of those hard times. Jack's still there, he still needs serious care, but to see how far he's come, and how great he's doing right now-- it really makes us very happy, and we can't help but thank everyone else who's been helping us, praying for us, and keeping us in their thoughts.

So Thank You, everyone. :)

itty bitty update!

Jack's off the CPAP, and doing much better. Again.. more to come! (Sonnet's tired and needs to go to sleep, otherwise this'd be a much longer, gushier entry about the cuteness of the Boy Wonder, Jack)

quick update-- more later

Jack's back on the CPAP. We're a bit disappointed, but still elated that he's in the crib and maintaining his temperature. Other then that, everything's pretty much the same.

Big steps!! and a little step back.

Jack's moved into a crib! He's been showing that he can maintain his temperature, and is now hanging out in a snazzy crib. Matt and Sonnet checked it out, and it comes complete with an awesome soundsystem, spinners, disco lights, a cupholder and rear view mirror, to check out all the honeys in the isolettes around him. He's doing quite well in it so far.

He also was visited by the eye doctor today. Apparently he's got ROP (Retinopathy of Prematurity) in his left eye. The doctor is going to check on him again in two weeks to see how it is, but he assures Sonnet that it doesn't seem very severe, and isn't very worrisome. To find out more about this, go to : http://www.charles-retina.com/rop-faq.htm

Just another tasty treat...

Jack's got what Sonnet refers to as the Super Nose Funk O' Doom . What it is, in reality, is that he's got colonies of 3 different types of bacteria-- staph aureus, enterobacter cloaca, and pseudomonas aerouginosa. Sounds ugly, right? Two of those, the enterobacter and pseudomonas, are gram negative, which means that they're contagious. They're only passed through touch, though, which means that we can still hold him, and touch him, and the nurses just take care to wash really well and use gloves when doing his care. The bacteria isn't making him sick, it's just living in his nose. They started him on nebulizer treatments of antibiotics today, so hopefully it'll get rid of his bacteria.

The little guy is getting big!! 3 pounds, 6 ounces of pure Jackness!! He's getting better with the nursing, but it's still a lot for him to take in, still being on the nasal cannula and with his lung issues. He's still doing pretty well though, and we're very proud of him.

The picture website now has a link to here, which should make it a little easier to go back and forth between. Thank you Nate for fixing it all up!!

Pictures and More!!

We now have oodles of new pictures at www.kirawill.com , thanks to the wonderful and generous nurse Cheryl, who has kindly provided hours of entertainment for Sonnet and Matt in the form of these pictures.

Ok, down to business. Jack has been taken off the aminophylline, which is for the bradycardia and apnea. In its place they now give him doses of caffeine. It does the same thing, which is, raise the heart rate somewhat and discourage the apnea and bradycardia episodes. He just got a nose culture done today, which will be ready in 48 hours, that will tell us how he's doing with the staph bacteria in his nose. Hopefully the medicine they're giving him right now will wipe it out.
Jack is doing fantastic with maintaining his temperature. He has been at room temp in his isolette for three days now, without a problem. He's still getting the hang of the whole breathing issue, but apparently he's got a little furnace in him, that he's having no problem with any of this milestone.
He's been given Zantac and Reglan now, for reflux, in the hopes it will slow down the reflux and the desaturations that he's been having. Desaturation means the levels of oxygen in his blood drop below acceptable levels. Usually his desats aren't too bad, and they come up on his own, but it's still better not to have them. They say he should grow out of them eventually.

Matt and Sonnet got to bathe Jack for the first time a few nights ago. It was quite the experience. We're afraid Jack is going to have to be quite patient with us, we're not used to washing such a squirmy worm as he is. He fought a lot at first, but then realized that the warm water wasn't so bad, and relaxed and enjoyed being taken care of.

And, lo and behold, Jack is on his way to earning the Happy Buddha Baby title! He's now 3 pounds, 5.3 ounces. Laurie, one of the nurse practitioners, is away this week, but has said that when she comes back next week she wants to see him in a crib with his very own dipping sauce. With the way he's growing, he just may fulfill that wish!

New pictures have arrived!!! Much thanks to the lovely and wonderful nurse Cheryl who took the new ones. We'll have a whole slew more soon, for all you Jack Junkies out there!

Jack's doing great-- the report is pretty much the same as the mini update, they're just watching to see how he does with maintaining his body temperature. He's upped on his food again, to 27ccs per 3 hours. He's on and off with the breastfeeding-- one day he's awesome, the next he wants nothing to do with it. But he's working on it all, and we're very happy with his progress. :)

mini update

Jack got to put on clothes last night. He's now a dressed baby, and they're working on weanining him out of the isolette. He did really great last night, because they started his temp at 30 degrees Celsius (don't ask me to translate, please... I'm horrible at conversions ** Sonnet), and they got him down to 27 Celsius, which is the lowest they go, and he's still doing well. Apparently he's a little furnace, like his Dad. We're still being cautious though, we don't want to get too hopeful at this development, but we are quite happy about it. :)

Pass the fried chicken!

THREE POUNDS, ONE point NINE OUNCES!!!


Oh yes.. he's hit the 3 pound mark, and just keeps going! C'mon, our little pork chop!

Jack: The other white meat (if you can find it)

Jack has decided to toy with our emotions. as of Sunday he was 10 grams away from 3 pounds. Sunday night he stayed the same, and Monday night he lost 1o grams. Lost!!! This from a boy who in the previous nights has gained 20, 30, or even 40 grams. So yep. Toying with Mom's emotions, the cad. They upped his food though, to 25ccs, so there's still hope yet! He's doing well with the breastfeeding. Today he got a couple five minute bursts and then decided that he was bored of it. Still though, he's doing well, especially considering he's still so little, and they tell us even term babies sometimes have issues with learning to breastfeed.

We have new pictures to post!! Hopefully tonight, perhaps tomorrow, of Jack in clothes! That's right, Mr. Tarzan has donned some jammies. It was only temporary, and he's back to being born free in his diaper now, but it was still ultra cute. It's strange how he looks more like a "normal" baby in them, because you don't see all the wires and such.

Jack is safe! Apparently the ever vigilant nurses got wind of Happy Buddha Baby's plot to devour Jack and his cohorts, and moved him down to another department. Last I heard they confiscated his stash of dipping sauces and sent him on his way!



In serious news, there's a new family in the nicu, a set of twins. We won't go into specifics here, of course, but they are in need of prayers, so please, join us in adding the M. family to your prayers this evening, this week... as much as you can. Thank you!

pictures and more

Apologies for a lack of new pictures-- if Sonnet gets her duff in gear, it may be conceivable that they'll be posted tonight. Rest assured, they are worth the wait!!! (**Note: Sorry for the wait, but really... watching JackTV, all Jack all the time, is just more fulfilling than posting pictures, hence the delay. Sonnet**)

Anywayyyyy...

Jack is doing quite well, and is being smothered with adoration from Mom and Dad. His second breastfeeding attempt on Sunday went even better than the first, with him getting several swallows of milk. Apparently he's a little champ at this. Both lactation consultants that have helped are very impressed, and are encouraged about our future with breastfeeding. He's still getting tube fed, 23ccs every 3 hours with 26 cal, but eventually we'll be able to wean him off that and go with breast/bottle options. Even when he goes off the tube he'll have to have some bottles, since at least two of his feedings a day have to be with the Super Milk (the 26 cal stuff).

On other news, the Happy Buddha Baby edges his cart closer to Jack's isolette, licking his lips and looking hungry. Sonnet's a bit worried that she'll come in to find Jack covered in BBQ sauce one day!!

On top of the roller coaster ride

Jack's on his way to being a Fat Baby at 2 pounds, 14.5 oz!! He's gotten onto the nasal cannula, we're so excited because he's doing well on it. He's still having episodes of bradycardia and apnea, but he's still really small, so we're not worried about it too much yet. Jack got to try breast feeding for the first time today. The lactation consultant was very happy with him-- he was able to latch and even feed a little bit on his first few tries. This after prefacing working with us with warnings that if he even slightly opens his mouth on the first try, it's a success. Apparently Jack is always eager for food. :)

There's a baby who's nearby to Jack who weighs 11 pounds. He looks SO BIG compared to Jack-- we're pretty sure that Jack is about one of the Happy Buddha Baby's legs. It really puts things into pespective when you see that.

Sorry for the delays...

It always seems there's stuff that needs to be done, but it tends to get disregarded in favor of going to our home away from home, the NICU.

Jack is doing better, thank you everybody for your thoughts and prayers (don't stp though, we're still in progress!:)). He vomited on Sonnet this morning during kangaroo care, and after Mom went home to shower for the second time today, he did it again. Apparently the vitamins make him queasy, and as he's just recently acquired a gag reflex, it's now showing itself with his puking. Luckily Sonnet was as amused as she was grossed out by it. :) He also decided that he was ready for another try on the nasal cannula, and extubated himself... again. That's right, he pulled his ventilator tube out for the fourth time. So the nurses put him on the nasal cannula, did a blood gas check before we left for the night, and it looks as though he's doing fantastic on it so far. He was also squirming like a madman all night. He's strong enough now that he can turn his head wherever he wants it, and he tends to streeeeetttccchhh all across the isolette. To us it doesn't look comfortable at all, but he seems to be, so we leave him be.

Foodwise, they've brought him to 20ccs with 26 calories (he was on 22ccs), and he is now 2 pounds, 12.35 oz, and he is 15 inches long. Grow Jacky, Grow! :)

Happy month birthday (cont'd)

The visit to Jack tonight was MUCH easier than this morning. He was finally resting and keeping his saturation levels up where they're supposed to be. We had a nice long relaxing chat with his nurse Stephanie tonight, and left feeling much better about everything. We also got some good news-- his brain scans came back completely normal. Whew!!! So that's one thing we don't need to worry about (thankfully!) We decided to bribe the nurses tonight -- we took them a big plate of iced brownies. They were happily enjoying them when we left. We're both very glad that there's something we can do to show our appreciation for them taking such good care of Jack.

Meds list

Just a list of the medications Jack's on at the moment:

Temporary:
Gentamyin opthalmic drops (for eye infection, to be ended Wednesday)
cefotaxime (antibiotic to be ended tonight)
vancomycin (antibiotic to be ended tonight)

Daily Meds:
Lasix (twice a day, dieuretic for fluid on lungs)
Aminophylline (every 8 hours, to up heart rate and discourage bradycardia)

Nebulizer treatments:
Albuterol (every 6 hours, to help with breathing)
Pulmicort (every 12 hours)

Vitamins:
Sodium Chloride (once a day)
Potassium Chloride (twice a day)

**notice... this list is subject to change**

One month old!!

Today Jack's 1st month birthday was celebrated by a chest x-ray, a brain scan, and a hepatitis B vaccine shot. He's doing better than he has been, but he's stll desatting a lot, and having problems with his lungs. He's up to 22 ccs per feeding, so that much is good. He's got quite the reputation now-- one of the nurses calls him "Badness" because he's always tripping his alarms, and when they do his cares he pushes, kicks, moves all over the place, and pretty much does what he can to thwart their effots. They've pretty much decided that if he pulls his ventilator tube out again, they're going to try him back on the CPAP.

**Notes from Sonnet**

Today is a really rough day for me, honestly. It's craptastic when your child is a month old and you can count, without trouble, how many times you've been able to hold him. Please, please, anyone who does have kids and is reading this, don't take those little things for granted. Listen to someone who doesn't get those things. I've been able to change his diaper 4 times-- average of once a week, although I haven't been able to do anything for him in the past week and half. I don't get to feed him, I can't get him ready for bed, I don't get to help him when he cries. Well, if I could hear him, which I can't because of the ventilator. The closest I get to caring for Jack is when I get to be "pain control" for the nurses, which means that I get to lay my hands on his torso and head to calm him while they do something to him, or for shots and such, I get to give him and hold his sugar water coated pacifier, to help him not mind it so much. I watch people in stores, in the mall and restaurants, who have kids, and how they interact, and I wish that were me. Then I get to go to the hospital, flash my handy bracelet, and see my son, talk to him through a porthole in the isolette, and maybe, if I'm lucky, the nurse gives me the ok to touch him.
Forgive the rant, today isn't my strongest day.

Happy October

Special thanks to to everyone who made it to the Early Blessings Bull Roast last night-- we had a blast!! Michael and Aime Yirka are awesome people, and we were very lucky to connect with a couple other preemie/nicu families as well. Sonnet won one of the baskets during the drawings they had, and everyone had fun talking, eating, and even cringing to some (really) bad karaoke (Bohemian Rhapsody, anyone?). Thanks again, Betsy Poppins, Kerry, Wilson, Terry, and Dave-- we're so glad that you could join us for a night relaxation and fun, that was also for a good cause. :)

On the Jack front-- Jack's now got the most fashionable isolette in the NICU, with the adorable black cat hat that Ruth was kind enough to get for him. It's a bit big for him at the moment, but we have plans of taking some pictures with him in it as soon as we're allowed to hold him again. He's doing well so far today, pulling is usual tricks of squirming and attempting to pull his tubes out, desatting, and then being quite just long enough to let the nurse relax a bit. He's at 2 pounds 11.5 oz, so he's working getting some weight. We'll have more news after we visit today, but so far, so good. :) The prayers are working, thank you!!