Saturday evening

Jack decided that he was going to make a run for it this morning, and extubated himself again. They put his tube back in, and he's doing well, just feisty as per usual. The nurses have warned us to start babyproofing the house *now*, before he gets home and mobile. :) He's going to be a handful, that's for sure! (Imagine proud parents beaming right about now!)

Early Blessings Bullroast-- And other news!!

Tonight is the Early Blessings Bull Roast. It's not too late to get tickets if you want to help a good cause -- go to http://www.ebfportal.org/ for information. It'll be fun, so come and join in!! (Where else can you stuff your face AND help a good cause?)

In other news, Jack is doing well this morning... Well, he's doing, as the nurse said, Jack-like. He hangs out and is quiet, then he decides to squirm and mess with his tubes and sets off all his alarms, then is quiet again. They're giving him yet another dose of lasix, this one via iv, per day, to help with the fluid in his lungs. We're also waiting for the eye infection to go away-- it takes a few days for the eye drops to work their magic, but the eye funk should be less and less as time wears on.

We ask that you keep us in your prayers, and appreciate all the good thoughts and prayers that people have been sending-- Thank you!!!!

late night update

Looks like Jack has an inguinal hernia which will need to be repaired when he hits around 3 or 4 months of age. The nurses say it's not a big deal, and he's got no pain from it, so we thank God little favors. He's slowly working on recovering from his illness, whatever it is, although his lungs are still filled with fluid. They increased his dosage of lasix from one to two doses a day, so that should help at least somewhat. They've taken the iv out of his head and put it in his arm, because the head one wasn't open anymore this morning. So now he's squirming all over the place, making the nurses run over every 5 minutes with all his stretching and making his alarms go off.

Jack!

Jack is slowly getting back to the high peak he was at previously-- yay!! They've upped his food back to 20ccs, and he is getting feisty again. He keeps reaching for his ventilator tube, and tends to try and squirm down the bed away from it. He's definitely keeping his nurses busy!! They're slowly weaning him off the ventilator, and his condition is stable.

Small update

Thanks to Sonnet's doctor's appointment this morning (that lasted well into the afternoon) she was unable to go visit Jack this morning and get a full rundown on his condition. However, a phone call to the nurses assured her that all was stable with him. He's doing well on his feeds, and moving around a bit more. There will be a bigger update this evening, once Sonnet and Matt get to visit with the oh-so-adorable Jack in the Box. :)

When we last checked in...

Jack seems to be doing much better today. They've put him back on the milk feedings-- he's getting 10 ccs every 3 hours, which he seems quite happy about. He's on two types of antibiotics, which should knock out whatever he's got. They found bacteria at his eye, but again, the antibiotics should be good enough to take care of whatever they find out that it is from the tests. He's still on the ventilator, but seems to be improving daily, so hopefully they'll move him back off it soon. Mom is still worried, but Dad's doing a good job of calming her down.

He was smiling at us today, his eyes open, looking all adorable. We're just enchanted by the way he knows us from our voices, and smiles at us, works to look at us even if we're at the other end of the isolette. He gets feisty when we're around, which is very nice. :)

Let the roller coaster ride begin

Jack didn't do so well through the night. He wasn't tolerating his nasal cannula, even though they turned his oxygen up. So they reintubated him and put him back on the ventilator. They're discussing giving him antibiotics, which makes it good that they kept the iv in his head, even though it's quite disturbing looking. The vein in the head is large and actually tolerates the antibiotics better than most of the other little veins, and it doesn't bother him at all, so that's a good thing. When they were putting the ventilator back in they got a bunch of crud out of his lungs, so they think perhaps that's part of his problem -- that the funk that he couldn't get out of his lungs himself was causing problems. We won't find out what the results of his blood cultures are for 24 more hours, although the routine blood work looked good, (the white blood count was normal, the red were low, but they fixed that part with the transfusion), so we're just standing by waiting now. Please keep the prayers up!!

** Also-- new pictures just posted, take a look!

nighttime update

They've given Jack the first half of his transfusion. He's got a very disturbing looking iv that's in his head. It doesn't hurt him, and it's put there because it's an easy vein, and because it's harder for him to pull out. It just looks wierd. He seemed slightly more feisty than earlier, so we're really hoping that the transfusion will make a big improvement in how he feels. They also upped the pressure of his oxygen to 4 (he was on 2 previously) and he's on 75% oxygen. So it's safe to say he's feeling kind of cruddy, but they're doing their best to make him feel better soon.

Three steps forward, one step back

Jack isn't doing so well today. They noticed that he wasn't being his feisty self, and did some bloodwork and took some x-rays. Sonnet was there during the procedures and got to help as "pain control" for them, which meant that she got to give Jack the sugar water laced pacifier that made him rather loopy and not minding of the pain. (sugar water acts on preemies in the same way morphine acts on adults) The nurses think that he may have an infection of some sort. As of yet, the x-rays have shown that his lungs are a bit cloudy, which might be oncoming pneumonia. However, the other blood test results that have come in have shown that his white blood cells are normal, and the others are down. He's also having trouble utilizing his oxygen, so they're giving him another transfusion. We're hoping that the transfusion will solve his problems and make him feel better, and that it's not anything worse. There's also a chance that they're going to start him on antibiotics, just to make sure.

On the positive side, even with the worries about infection, Sonnet got to do kangaroo care with him today, and he seemed to really enjoy that-- his oxygen level, heart rate, and respiration numbers were all perfect while she was holding him. It's a really nice feeling that he's recognizing his parents, and knows when they're holding him. He's also still taking his food very well, not leaving residuals, and his digestion is working well. He's gaining weight, last night he weighed in at 2 pounds, 9.5 oz. Also, although they think he's getting an infection, they're not very worried about his health just yet. They're mostly in precautionary phase, in that they've noticed he's not feeling well and are determined to nip it in the bud as soon as possible. Please be sure to send your prayers along so little Jack feels better soon!

Sorry for the lack of updates!

Jack is doing really great-- he's moving around, being a total wiggle worm. He's also smiled a couple times, although we're pretty sure the smiles are just an excuse for being cute while he's dirtying his diaper. ;) He's doing great with his feeds, he's been taking all his food. Also, he's gained a bit of weight, so he's at 2 pounds, 7.5 ounces.

Sonnet's been able to start changing his diapers, and he's been out to be held by either Sonnet or Matt almost every day this week-- he's been a well adored little boy!

wiggle worm!!

Jack is such a wiggle worm!! The nurses have stopped trying to put him into the usual baby-beloved positions, because he just squirms and stretches out, into a completely uncomfortable looking position that he seems to adore. He tends to take on the look of someone who's just walked into a room and dropped to pass out on a couch. It's cute. :)

They've upped his feeds against to 20ccs, and he's gained an ounce so he's at 2 pounds 6 ounces. We're hoping he doesn't lose any of that again, so that soon we'll have a fat baby. :)

Other then that, there's been no changes, he's doing well and growing, the nasal cannula is a huge improvement for him that he's loving, and we're very happy for his progress.

Little man is growing!

Jack was weighed and measured last night, and he now weighs 2 pounds 5 ounces, and is 14 and 1/2 inches long. He's taking his feeds of 18ccs + 24 cal mixture well, and he's doing wonderfully on the nasal cannula. We got some more pictures last night (which will be posted soon, we promise!)

2nd attempt with the nasal cannula

Matt and Sonnet got to the NICU last night to find that two changes had been made with Jack-- that he had been put on a nasal cannula instead of the CPAP mask, and that he had been given a pacifier (or, paci, or binky, in nurse/baby talk terms). The nasal cannula is a breathing apparatus that consists of 2 small prongs going into the nose to deliver heated humidified air, to make it easier for him to breath. It's much more comfortable for Jack than the cpap, and he seems to be a lot more agreeable with the change. He's also quite adorable with the pacifier, too!!

Sonnet got to hold him today, for k-care, for the first time with the nasal cannula. It's a lot easier to hold Jack with the cannula, since there's no huge tubes coming from his nose or mouth.

Jack's feedings have been upped again, this time to 18 ccs of food every 3 hours. It looks like he's taking it well. :)

** New pictures have been posted at www.kirawill.com !! Sorry for the delay!!

First!

Sonnet got to change her first diaper today -- luckily Jack was being nice and it wasn't *really* dirty. (whew!) She also got to hold him for a couple hours, which, of course, was heaven.

Jack's been doing well today, taking all his food, accepting his respiratory therapy without much fuss, and being overall pretty sweet to the nurses. He also really enjoyed laying on his mom for awhile, even if he did wriggle out of his cpap four times during their kangaroo care. The therapist said that his lungs sounded really great today, so it looks as though the medicines must be working. Yay!

And to start another week...

Matt got to hold Jack for 2 and a half hours, which both of them loved. Jack quieted down once he got to lay on Daddy, and Matt sat happily holding him and talking to him the entire time. We took some great pictures that will be posted soon.

Jack's feeds are now 15ccs every 3 hours, but with an added packet of nutrition that are 2400 calories. This is to help him gain weight, especially since the lasix he's on makes him lose fluid weight. He's doing well with digesting, and the nurses happily tell us about all his dirty diapers. :)

Please check out www.ebfportal.org . It's a website that raises money for nicu parents and patients, and they're holding a bull roast on Sept. 30th. We're going, and we're trying to get as many people as possible interested. You can buy tickets online.

*bliss*

Sonnet got to hold Jack on Saturday night, which was awesome. Although he's been feisty and not wanting to be touched the past couple days, he settled right down once he was placed on her chest. We hope that Matt gets to have some kangaroo time on Sunday, that way Jack gets snuggling from both parents each weekend --- Yay!!

Happy 2 week birthday!

Jack's been super feisty the past 3 days, and today was only a slight exception. He's been quiet for most of the day, with only one incident that involved him unhooking his cpap tube. He desaturated once while we were there, but a simple massage and readjusting his cpap got his saturations back up. To be desaturated means that his oxygen level's down, and happens when he's not breathing right or not pulling the oxygen into his blood.

They've kept him at 15 ccs of food every 3 hours, and are now adding extra calories to it, to help him become a fat baby. :) He's doing well for the most part with it, usually leaving no residuals, and when he does, it's not much. He's back down to 2 pounds 3 ounces, because of the lasix, which is making him get rid of extra liquids.

2nd try with the CPAP

Around midnight last night Jack pulled out his ventilator tube, so they're trying him out on the CPAP again. That should be nice, we're hoping for the best, but at the same time, we're not keeping our hopes up that he won't go back to the ventilator. He's just so small yet, and his lungs aren't quite as developed as we'd like. He's breathing pretty hard on the cpap today, but his gasses are the same as with te ventilator, so they're hoping he adapts to it this time.

His IV came out, they're leaving it out for awhile to see how well he does with his feeds, and to see if he really needs it still. They've also upped his food to 15ccs, given over an hour, every 3 hours.

They've put him onto decadron, which is a steriod, every 6 hours, for 4 doses. Decadron improves lung maturity, which will make it easier for him to either absorb or get rid of the fluid in his lungs. They're also giving him lasix, which is a dieuretic, once a day. Between the two meds, they should help his lungs get rid of the fluids that are in there.

After an early visit on 9/14

Sonnet got to have kangaroo time with Jack today, pictures will be posted shortly. He did very well, although a leak in his ventilator line led to quite a few false alarms going off on his monitor. He did well with the blood transfusion, and has been upped on his feeds yet again. He has gone up from 9ccs to 12ccs. Yay for Jack!

They did an x-ray on his chest, apparently there's a lot of fluid in there, which is bad. However, they gave him some medicine (didn't write down which this was, will try and get it next visit), and he's sounding a lot better to the respiratory therapist. We're anticipating that he'll need more treatment for this, but at least they're doing something to help it. And, as with all the things Jack has been encountering, this seems to be another one of those standard preemie things. We finally got the results of his head sonogram, and they came back perfectly normal. Yay!

As of 9/14

Jack had to get a blood transfusion last night. It's apparently a standard thing among preemies-- they don't make blood quick enough to replace the blood cells that die, so they tend to need the transfusions. Apparently he took to it well, and his gas saturations (how well he absorbs oxygen, etc) are good. Also, he's still taking his food really well. He's left nothing from the last two feedings they gave him, which is wonderful. He's up to 2 pounds, 6.5 ounces. Hopefully soon he will be a fat baby. :-D

Sonnet is going for a checkup today, to check on her blood pressure and see that it has gotten back down to normal. Wish her luck for holding back her temper from the doctors!

a mild setback

They put the ventilator back in. Apparently he was working too hard on the CPAP, and his blood gas tests weren't good, so they put him back.

On the positive side, they've upped his feeds from 6ccs to 9ccs of breast milk every 3 hours. He's now weighing in at 2 pounds, 5 ounces.

After our visit, 9/11

Sonnet got to hold Jack tonight, which was great fun. He's off the nasal cannula, and wearing the cpap, which is a bigger set of nose plugs. It's a step back from the nasal cannula, but we think that perhaps they just jumped ahead, and he wasn't ready for all that. So he's back to the cpap, and that's ok. They say that they're going to be going back and forth on the cpap and nasal cannula, to see when he's ready for everything.


Tomorrow we get back the echocardiogram on his brain. That one will tell us if he's got any brain bleeds. We're praying he doesn't, of course. Sonnet will be able to update on it when shes get home from the hospital in the afternoon-- lucky mommy getting to go twice in one day!

9/11, 4:52p.m. update

The results for Jack's echocardiogram came in, and to much happiness, his pda has repaired itself, with the help of the medication that he was given over the weekend. Apparently they attempted to wean him off all extra air today, but that didn't work, so they put him back on the nasal cannula, the little nose prongs. Apparently he's working pretty hard, but so long as his blood/gas tests come back good they'll keep him on the prongs and not put him back on the ventilator. We're really hoping that he doesn't go back on the ventilator, we don't want that step back, but if it's in his best interest then of course we'll take it.

As of 4:30, however, his gas saturations were good, and although he was breathing hard, he's absorbing all the O2 that he should be. There will probably be another update after we visit tonight and get to see the little niblet.

9/11, 11:21a.m.

As of this morning, Jack is doing fairly well. They've upped his food from 3 to 6ccs every 3 hours. He got an echocardiogram to check on the pda, but they hadn't gotten the results yet, as of the time of my call. His saturations (oxygen in the blood) were good, but they had to turn the oxygen up to 40%. But all that is normal, they had him out and doing lots of stuff, with the ecg, and he also had a bradycardia episode during the ecg, where his saturations dropped down to about 82 (They try to keep his saturations between 88 and 100), so they upped the oxygen in his air so that it would be easier for him to get at.
I'll update more when we get the results of the echocardiogram!

update on the pda, and apnea

Jack's gotten through his doses of indomethacin, and his heart murmur has only been heard intermittently, so that's a good sign that the meds are working.

He's been diagnosed with neonatal apnea, called bradycardia, which is when he forgets to breath, and his heart rate drops for more than 12 seconds at a time. They're giving him aminophylline for this. It should decrease and work itself out as he gets older and his nervous system gets more coordinated with itself.

They've extubated him, which means that they've got him off the big ventilator. He's now just got the nasal cannula-- the little nose prongs that give him humidified oxygen. This means they've turned the oxygen mix up to about 30%, but it's a trade off -- he doesn't have the invasive tube down his throat, but he is working harder to breath as he gets used to being without it. All in all this is a good thing, them weaning him off the ventilator.

Sonnet got to hold him on Saturday, and it was sheer heaven. Matt got to hold him on Sunday, and both of us were completely blissed out. Pictures are posted on the website. We did kangaroo care-- holding his little body against our bodies, letting him get warmth from us, and feeling us breath and our heartbeats.

He's now gained back all the weight he lost after he was born, so as of Sept. 10, he was back at his birth weight, 2 pounds 3.55 oz. That is SUCH good news, because now he'll start putting on weight above and beyond what he started with.

They had to take him off the breastmilk for the duration of the indomethacin, but he's back on the milk now. They put him back to 3 ccs of breastmilk every 3 hours, so we're anxious to see how that goes. He was tolerating it very well yesterday, so we're kind of hopeful that they push it back up to 6ccs every 3 hours soon.

All in all, he's doing remarkably well for as little and young as he is. He's got some problems, but they're basic preemie problems, and he's doing really well with them. He is so precious, and we both adore him with all our hearts.

He's doing really really well, for a preemie that's 27 weeks early.

Patent ductus arteriosus

When we went to visit Jack last night, we were told that apparently he's got something called patent ductus arteriosus (pda). That means that there's a little flap in his heart, a doorway of sorts, that hasn't closed yet, and it is fairly common in preemies. They're giving him a medicine called indomethacin, in 3 doses, and are confident it should work. They've already given him the first dose. Twelve hours after the first dose, they give the second, and then 12 hours after that, the third. After THAT, they wait 12 more hours and do an echocardiogram to see if he's still got the heart murmur that is indicative of this. So we should know how it worked by the end of the weekend, if my math is still good. If it doesn't work, then they'll do the entire medicine regime again, and worst case scenario, there's a surgery they can do that's relatively simple that can fix it. It's still heart surgery, but they've pretty much perfected that one. Understandably, we're hoping it's fixed way before we get to looking at the surgery.

On the upside, his respirator is still set to a lower setting. He's been moved down from 40 to 30, and then down to 19 breaths per minute, and he's still doing really good with that. They did move his oxygen mix back up to about 24% up from the 21% that is normal air, but that's to help along with the medicine that he's getting. Overall he's still doing really great.