The absolute shortest time frame we're looking at, to bring Connor home, is 2 weeks. Oh, how I'd love to have him home by Easter! (But, I'm not holding my breath...)
All of the doctors and nurses are impressed with how quickly Connor bounced back from this latest infection. SO GLAD they caught it when they did! I know he wants to come home as badly as we want him to...
"Graduating" to the step-down NICU side isn't so much real progress as it is a need for space for sicker babies in the Level III NICU. Yay for Connor for being one of the more stable ones for once! He moved back over last night. It's not a window seat and the chairs are crappy, but it's just going to be temporary, right??
Baby boy is 8 lbs, 5 oz and 19.7" long. This puts him right around the 50th percentile on the preemie growth charts (meaning 50% of preemies his age are bigger, 50% are smaller).
His feedings are currently alternating between regular preemie formula and Pregestimil. He HATES the Pregestimil, so they've agreed to NG feed him those feedings.
Right now he's at 40ml per feed... but for his PO feedings (by mouth) he's allowed to take as much as he wants, even above 40ml. Would be awesome, but...
Connor has really bad reflux... he spit up at both of his feedings this morning. Luckily, his Reglan started back up at noon.
They've agreed that he needs to get his circumcision done... SOON. (Seriously, what baby isn't circumcised by the time he's 4 months old??) The sooner the better... the less chance he'll remember it. Once he comes off of his IV nutrition, they'll do it. This way he'll be all healed up by the time he comes home.
Connor was gifted a blue Michigan teddy bear by his social worker today - very cute... Grandpa Sprik would definitely approve! Hopefully this won't irk his favorite doctor too much... he's a Wildcat.
That's it for now... back to the hospital for his 4pm feeding.
First things first, check out this sweet post written by Crew's mom... love.it.
Because there is never enough time to make the phone calls I want to make, or write the messages I want to send, I'm trying to post information more timely online. You can follow Connor's progress with more frequent highlights in the right sidebar under "Connor's Chronicles", or in our status updates on Facebook. Sometimes it's easier to write a short blip there, rather than a long post.
Please know that if you have contacted us, or even dropped something by, you helped to make our day... we appreciate your efforts so much and apologize that we haven't gotten back to you... yet! For now, it's been a little more time-effective to do a blog post to answer the majority of the inquiries. We are touched that you care so much!
An update? He's doing really well, all things considered. We're on Day 4 of negative blood cultures, so it appears he's beat the infection. Yippee yay! He'll remain on his antibiotics cocktail for about 2 more weeks.
After about 6 hours and 3 different attempts over 2 days, Connor finally got a new PICC line in the back of his left leg. Prior to the infection developing, he was only days away from having it removed completely. With this third line now in, he's got awhile to be weaned from his IV nutrition before it's pulled for good.
Connor was taken off the CPAP and put back on the nasal cannula Friday morning. He's been doing really well on room air, with a very light flow. I bet he'll kick the cannula by the middle of next week.
His night nurse said that she noticed significantly fewer alarms last night. Such.good.news.
He's up to 15ml per feed of the Pregestimil. We hope they're able to switch him back to the preemie formula soon. He doesn't seem to like the taste. Don't really blame him. Smells like bird poop.
His bum is healing. There's less bleeding, more scabbing, and some new skin growing. His nurses have been religiously following his butt plan of action, and it seems to be doing the trick. We've got some cute shots of Connor mooning one and all...
Airing out his "issues" - March 27, 2009
Not sure if they'll be "graduating" Connor to the step-down nursery anytime soon, if at all. We're okay with the extra attention for now. Not sure if we'll continue to be consulted on his nursing assignments, but it wouldn't surprise me if we were. It's just easier when you know which nurse will be on him next, and that you're comfortable with them taking care of your baby.
We believe Connor caught this infection because he's in the hospital. (Just like I caught the two I had during my stays.) We desperately need him to get stronger so he can come home and avoid what happened to him this past week.
Hospitals are some of the germiest places on the planet... after all, that's where people go when they get sick, right? Whenever I see the lobby full of extended families, including infants and children, waiting for someone to give birth, I cringe. (Maybe someone should stay home and babysit??) Precautions are taken, and there are sterile environments, but it's not foolproof.
Brian and I are completely drained, but we've got to keep it all together for Connor. We're back to being present for each waking feed - 8am, 12pm, 4pm, & 8pm. We have another Family Conference on Tuesday, where we hope to see a plan for discharge clearly outlined, so we have solid goals to strive for.
Connor can come home on oxygen, NG feeds, thickener, special formula, monitors, etc.. He'll have to show that he's able to tolerate the appropriate feeding volume (around 70 ml per feed), and then gain weight two days in a row. We're confident he can do this.
We don't know how much this week's events set Connor back, as far as a discharge date. Prior to getting sick, he was likely coming home at the end of this week.
Blogging from Connor's bedside. Hope you've got a minute... Supposedly they have wifi, but it's super weak and the connection goes in and out. :( We'll see how long I have patience for this...
Monday morning at rounds, Brian told the staff that we really needed to be making some progress towards his discharge (mostly for our sanity and well-being). They agreed that the end of this rollercoaster was most certainly in sight, and immediately began taking steps to bring us up to speed on some of the equipment and procedures we might have to bring Connor home on. We started making plans to learn all of the caretaking steps. At 4pm, Connor had a great assessment with the speech therapist, and she suggested that he come off the thickener, and just drink regular formula (breast milk all gone) every 4 hours.
About an hour after his feeding, while I was rocking him to sleep, Connor had a really bad spell. Suddenly his alarms are screaming, and his nurse is immediately yanking him from my arms and administering oxygen. He turned a bit dusky, but he came back okay after a few minutes. I've never been so scared! They theorized that he'd had a little reflux, it had gone down the wrong pipe and he held his breath for too long.
Still shaken up, that night I just had this sick feeling that we were going to receive a bad diagnosis soon. Sure enough, his night nurse called about 6am the next morning. Connor had developed a fever at 4am. They'd drawn up a bunch of labs and things were pointing to a raging infection.
You might remember that we dealt with this previously... just about 2 months ago. Very similar infection, but this time it was like one minute he was happy as a clam, the next minute his heart rate was dangerously low and he stopped breathing. Since that spell on Monday, he just hasn't been the same.
Connor has a bacterial infection. They have found gram negative rods, specifically e coli, in his urine, blood drawn from his PICC line, and blood drawn peripherally. You can read more about it here and here. So, not only does he have a horrible UTI, he has this infection in his blood. Last night they were even calling it sepsis. We don't know what came first, the UTI, the blood infection, or a contaminated PICC line - and there's no way to know for sure. One thing's certain, he caught it here in the hospital (just like I caught my similar infection after the c-section). Infections just explode within his body because his immune system, due to being premature, is so much weaker than that of a normal newborn. He desperately needs to beat this infection, restart his feeds, and rapidly progress towards discharge - we don't want any more scares like this one!
He's had a barrage of tests performed already... a spinal tap (his 3rd), an echocardiogram, an EKG, a chest x-ray, a kidney ultrasound, numerous blood gases and CBCs, blood clotting factors, blood cultures, urine cultures, stool tests, an RSV culture, and I forget what else (there's a whole lot more)... probably another $25K just in tests these past 3 days. He's received 2 platelets transfusions and 1 blood transfusion so far.
Because bacteria will cling to any foreign objects in the body, his PICC line was removed yesterday. Now Connor has 2 IVs - 1 in his hand, 1 in his foot, both taped down to uncomfortable boards - to manage his needs for transfusions, medications, and IV nutrition/fluids. If these IVs even last that long, they have to be moved every couple of days. Once the infection has cleared, his doctors will consider whether or not his PICC line will be restarted (we're thinking that's 100 % likely).
With his IV nutrition stepped back up, his little body is all swollen from the fluid increase. He's been much more pale and lethargic, and is not tolerating any handling (which is pretty much all day long for all the tests they're running) very well at all. Brian and I have only held him for about an hour total today, because that's about all he could seem to handle.
Wednesday evening he was having bradys and desats too frequently, so off came the nasal cannula, and now he's breathing with a CPAP. He last used one during his first 2 weeks of life.
His feeds were stopped, so he's beyond starving. When they possibly begin them again tomorrow, he'll be on a special pre-digested formula called Pregestimil. Hopefully this is only temporary, and he'll be able to go back to the preemie formula.
The diaper rash completely broke down to an open wound and has been bleeding off and on. He's back on IV nutrition, off food (due to the infection), so he's not pooping as much. We hope this allows his bum to heal. There's a butt plan of action posted at his bedside for all to see regarding the ointments and special wipes they have to use at every diaper change. Desitin just won't cut it for this kid. Occasionally, they rest him on his stomach, open up his diaper, and position an oxygen mask on his bare bum. But... he's not much for breezes down there.
As of today, he's been holding his own on his temperature, so the fever seems to have subsided. Today was also the first day of negative blood cultures (meaning the specimens they drew yesterday have not grown any signs of the infection. They will consider his infection and sepsis subsided once they get 2 days in a row of negative cultures (so, we're halfway there). They won't be stopping his 2 antibiotics until 14 days from the 2nd day of negative cultures. He will likely be weak and lethargic for several more days, while his little body recovers from fighting the infection.
There's much more going on with him right now... billirubin elevated even more - he's very yellow, calcium and phosphorus way off, potassium too low, sutures poking from his incision, etc., but those are pretty much the highlights. Hope I haven't put you to sleep...
Unfortunately, during the recent course of events, we had to become "those" parents. Through this whole experience we've tried really hard to never become high-maintenance or demanding of the staff. I think we've done a pretty good job so far. We've been here 101 days after all.
An incident concerning Connor raised our blood pressure a bit on Tuesday, and we had to voice a concern... within minutes a solution was in place. We've been so amazed and impressed with the staff's responsiveness and sensitivity to the issue... at every level, from the secretaries to the nurses to the doctors to the managers. They really have renewed our faith and belief in them that Connor is receiving the best care possible. Maybe they're aware we're cognizant that Connor is not their only patient and we're not the only parents they have to deal with today... that we don't want to be too demanding of them... but we have to speak up and fight for Connor's well-being.
They've bent over backwards to ensure that we are comfortable with his line-up of nurses for the next 10 shifts. His primary nurses have been calling on him during their time off just to check how he's doing. They truly care about him, and their hearts break as much as ours to see him struggling. Meanwhile, they've offered us a room for the night, right across the hall from the door to the NICU... allowing us to take easier shifts at Connor's bedside, and not crawling out of here well past midnight.
So, Brian's got the first shift of sleep tonight... I sit here, finishing up this novel, hoping I don't give myself whiplash every time his monitors alarm. (Right now they're red alarming - most serious - about every 90 seconds due to some technical issue with his leads - it's beyond annoying... I'm going to end up in asystole myself!) It is nice being so close to Connor this time of day, knowing I've got all night with him...
Thanks so much for your increased prayers, comments, and messages in Connor's behalf. We know they're helping him to improve... they're most certainly helping us hang on.
Nearly another week has passed, and we're still surviving!
His due date came and went. I was okay as long as I didn't think about it too much. That's healthy, right?
Please don't mind my mad writing skillz... I should have been in bed hours ago.
Tuesday, March 17th, was a big day for Connor - he got to move to the intermediate nursery! This means a little bit more privacy, though the neighbors are closer and a lot more vocal. We don't hear as many alarms on this side, which is even better - I can tolerate babies crying... even all 15 at once.
Each nurse carries more babies per shift on the new side, so he doesn't receive as much attention as he did on the Level III side. Brian and I try to provide the majority of his care during the day, hence this new set-up is not much different for Connor.
Currently, he's up to 55ml on each feed, and he's able to take 25-40ml by mouth each time (the remainder is NG tube fed). Yep, he's a rockstar and is now able to tolerate bottle feedings every 4 hours. His food is being fortified and thickened, to make it easier for him to swallow without aspirating. Brian and I plan for at least one of us to be there for his 8am, 12pm, 4pm, and 8pm feeds (his night nurse handles his 12am and 4am feeds). By the time we finish one feeding and get him settled back in bed, we have about 90 minutes until the next one. It's a lot of back and forth to the hospital, but he's worth it.
He'll be finishing up the last of his breast milk in the next couple of days. We really hope that the amount he did receive will be enough to give him the good start we wanted him to have.
When he finally leaves the hospital, for his entire first year, he'll have to be on higher-calorie formula for preemies. We'll have 2 options, Neosure or Enfacare (provided Connor's system agrees) - but they're both brand names - no Kirkland (Costco) formula for this kid! These elusive preemie cans, usually found on the very bottom shelf of some stores, are also only sold in "preemie" sizes (12.8 oz vs. the normal size 22+ oz). Naturally this formula costs more ($1.03/oz regular brand-name formula vs. $1.25/oz preemie formula) and they very, very rarely run coupons for it (if you ever see any, please send them my way!)
The tarnished silver lining with Connor being in the hospital so long, is that we'll have had at least 3.5 months of free formula and diapers. Yay for insurance!
With Connor nearly exclusively on formula now, the calcium, phosphorus, and billirubin levels in his system should start to normalize. They've been off for a little while, since he's been on IV nutrition for so long. He potentially will come home on medications to help regulate these levels.
Last Thursday, Connor underwent a VCUG to check to see if his past recurring urinary tract infections were caused by urinary reflux. Happy to report that he handled the test very well, and they did not see any signs of reflux. He's been on a low dose antibiotic for weeks now, to prevent another UTI. After this test they were able to stop the antibiotic... hallelujah! The medicine was causing him to have super loose stools, which in turn gave him a very severe diaper rash... he's in so much pain right now. Poor little guy!
We have another Family Conference on March 31st. At that time, we'll be having a serious discussion with his doctors about what he might be coming home on... he's reaching that point where he's stable enough, and we could be taught how to handle equipment and medical paraphernalia, that they will consider sending him home. Even if it's with oxygen, with an NG tube, with medications... we're game for any and all of it. So, maybe we have just another week and a half... we're starting to hold our breath. We just want him home.
If we crane our necks to look out his window, we can see a little daylight. Not gonna lie that the thought has crossed my mind to just grab Connor and make a run for it. But, we must be patient a little while longer...
Here's a video for the grandparents: I'm not sure which is more annoying - hearing my recorded voice, or listening to his neighbor wail. We are praying that she gains weight again tonight and gets to go home tomorrow morning! (She did... YIPPEE!)
On Wednesday, Connor hits Day 100 of life in the NICU. The nurses keep saying they want to do something special for him. We suggested a going-away party. Would be so nice...
Not sad at all to leave the Level III side - March 17, 2009
Settling in to his new spot with "Auntie" Lyn (one of our fav nurses) - March 17, 2009
Learning to be expressive - March 17, 2009
A little more expression...Connor used to be so mild. He's certainly found his voice! - March 17, 2009
Telling Daddy stories - March 21, 2009
When he's really sleepy... he only opens 1 eye - March 21, 2009
CHEEKS! - March 21, 2009
Father & Son - March 21, 2009
Thanks for reading our little blog, and sending such nice messages and comments our way. It really means the world to us that all of you care about our family and our little guy! Thanks again for all of your thoughts and prayers -we see them in action every day!
P.S. I'm getting ready to send out Connor's birth/coming home announcements. (No date yet, of course...) Please e-mail us your address - we'd love to send you one!
The hospital that Connor's in has very strict visitation policies for the NICU. Partly due to its small size, but mostly to protect the babies inside. All along, we've only been allowed 4 people total on his visitor roll (besides his parents)... and these people were not to be changed... ever. So that means his 4 grandparents filled the roster, and that's it. Only 2 people are allowed at his bedside at a time. On very few occasions, they've "bent" the rules a bit, allowing us to bring in someone from church for a blessing or a rare family visit.
Once we finally bring Connor home, we won't be able to have visitors for awhile. We won't be going anywhere except to his doctors' visits for quite a long time. Because he's a preemie, and because it will still be flu/RSV season (tail end), we need to take every precaution... to make sure he doesn't have to go back to the hospital. Unfortunately, lots of visitors means lots of germs, and his immune system won't be quite strong enough to ward off even the tiniest bug. (Not that we don't want to show him off... we do! We just can't take the risk. You understand, right?)
So, with that being said...
Since moving to the step-down NICU at Rush-Copley, Connor's now got his very own WINDOW! The window looks out into the Mother-Baby hallway (and if we strain, we can even see daylight from his bedside!). If anyone would like to come see him, he can have visitors this way. Please contact us, and we'd be happy to meet you (if we're not there already) and show off our little guy.
18.75" long (I think he's longer than that... we're gonna re-measure tonight.)
UPDATE (as of 8pm): 7 pounds, 13 ounces 19" long
You've come a long way, baby!
Today feels like Spring... sun is shining, birds are singing, breezes are blowing, neighbor girl is screeching (I really hoped she would have outgrown that over the winter - makes it hard to enjoy having the windows open!).
Spring is when we were planning on having a new baby at home with us (Wednesday, March 18th, is Connor's due date). He's 91 days old today... that's about 89 days too many of visiting him in the hospital.
We're making progress, slowly but surely...
Connor's up to 45 ml at each of his 6 feedings per day (typically increasing by 5 ml for each feed every day), and is now bottle feeding 3 of those times - 12pm, 8pm, & 4am. At each bottle feed, he's not yet able to take the full feed by mouth, so they have to finish his volume with his NG tube, the same way he's fed for his other 3 feeds. His mouth feeds are still being thickened, but that might be discontinued as early as Wednesday. There's some chatter about repeating his video swallow study, but as far as we're concerned, it's not happening again unless he absolutely needs it.
He's quickly being weaned from his IV nutrition... once that's gone, they'll be able to remove his PICC line. He'll probably finish with it about the same time he switches from breast milk to formula.
Connor's still desatting a little, but he's hardly receiving any oxygen - just flow. Not sure how much longer they'll keep him on the nasal cannula. His desats are usually directly related to his mood - ie. when he's upset... just like any other baby.
Friday, Connor had another eye exam... and won't have to be tortured for another TWO MONTHS! Yay! His ophthalmologist liked what he saw - good growth, no retinal detachment - and won't need to follow-up with him until he's out of the hospital.
Connor's size is about right on for his adjusted gestational age (which this week is the same as a newborn). We're pretty proud of our little guy growing so well, especially with everything he's been through!
For the most part, he's able to be stimulated as much as any 3-month old can tolerate, but developmental milestones will likely be adjusted down until he's 6 months old. He's able to track and follow his mobile like a champ now. Observe:
We've had several casual conversations with his nurses lately about how much longer... what could he possibly go home on (some of his medications, oxygen, even NG feeds). We've let his nurses know that the extraneous stuff Connor might come home on doesn't intimidate us - we're willing to do what we have to do. Pretty much, he needs to be able to tolerate a full feed (somewhere around 70 ml) before discharge. Once Connor reaches a point that there's nothing more they can do for him in the NICU, that we couldn't do for him ourselves, he'll be able to come home.
Tomorrow is our scheduled Family Conference. We're hoping there's a serious discussion begun regarding his discharge plan, or else we'll be initiating it!
I think he's going to have long eyelashes like his daddy - March 12, 2009
Learning to stare - March 15, 2009
Connor & Mommy - March 12, 2009
Entertained by Daddy - March 15, 2009
Patiently enduring another assessment - March 13, 2009
Bottle feeding makes me tired! - March 13, 2009
Growing too big for his britches! One of the few preemie outfits we've had Connor wearing that would accomodate his PICC line and various wires/tubes. (Thanks, Aunt Sharon!) - March 13, 2009
A couple of times a week, his nighttime nurses snap cute photos of him and leave them at his bedside for us the next morning. It's so hard being away from him at night, but we appreciate them trying to capture his cuteness for us when we can't be there. (Please pardon the image quality... scanner's still not working, so these are pictures of pictures.)
Here's our Connor Photo Gallery, as taken by his nurses. We're running out of reachable space on these cupboards, so he better be on his way home soon!
"Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a 'healing' cures our illness or lifts our burden. But sometimes we are 'healed' by being given strength or understanding or patience to bear the burdens placed upon us."
Yesterday was Connor's video swallow study. They let me shoot a bit of video of the test... don't mind my camera skills - I was trying to hold it steady while watching Connor on the table.
And the results... inconclusive.
Sadly, Connor wasn't set up for success. The whole concept of the bottle is new to him, plus he hadn't been given one in several days. They wanted him to swallow 20 ml of barium (yum!), when he had previously only had 5-7 ml of breastmilk in his feedings before. With all the excitement with the newspaper earlier that morning, he hadn't gotten a good nap in before we went down to Radiology, so he was really sleepy. And the kicker... the speech therapist was the one who had to administer the bottle, and he's not exactly fond of her.
As you can see in the video, they weren't able to get a lot of footage of him swallowing the barium, much less milk. So glad we had to put him through that. At least they were able to see that generally speaking, most everything is working properly.
The speech therapist will reevaluate him on Monday. Meantime, he's able to bottle feed twice per day, 25 ml mixed with a thickener to make the milk a nectar-like consistency. Hopefully this will help him grow stronger with his bottle feedings without taking in too much milk and aspirating.
Currently, his neonatologist is hypothesizing that Connor's need for extra oxygen at this point might be related to the fact that he was born premature, and his lungs haven't quite caught up to his recent growth spurt. Today he seemed to be requiring less oxygen, except for when he was fussy. He's been a little more affected by environmental noise lately (wailing babies, loud parents)... which has been causing a lot of the fussiness. We hope he gets to graduate soon to the step-down NICU, where it's usually a little quieter.
So, we'll be working on bottle feeding over the weekend... how about you?
Back in the NICU after the video swallow study, enjoying the "oaky afterbirth" of the barium - March 11, 2009
The pudge of his cheeks is starting to fill out the rest of his body! - March 11, 2009
These were the photos taken of Connor this morning by Chuck Berman, a staff photographer for the Chicago Tribune. We're not sure if they'll be printed in the paper or not, but it was nice of him to e-mail them to me all the same.
I'm really glad I bothered getting ready today... because I sure didn't count on my picture being taken!
OK... I apologize for that last post. I let the blechs of our situation get the best of me... no more Debbie Downer! It doesn't do me any good.
(BTW, thanks for all of your encouraging comments and e-mails!)
I had a great chat with one of our favorite neonatologists the other night. He stopped by Connor's bedside to address some concerns I had about a drug they might potentially use to treat the reflux (if that's what he has). Nearly 25 minutes later, I was convinced and feeling much more positive about things... Connor has come a very long way and is receiving the best care possible. His nurses call in to check on him on their days off, and his neos brainstorm what could be wrong with him in their off-hours. We just need to keep our eyes open for the light at the end of the tunnel... here's hoping it's just around the next bend!
Another perspective photo... The hospital gave us this "unofficial" birth certificate today. Check out the size his feet once were (they've grown almost another inch!).
Today Connor is 12 weeks old... it's amazing how time has both dragged and flown by. We've now gone to the hospital more than 170 times, and could drive the 2 miles in our sleep! (So grateful we live so close.)
As of last night, Connor weighs 3174 grams (6.9974722 pounds) - just 1 more gram (which we expect tonight) and our little micropreemie (born at 2 lbs, 6 oz) will be 7 pounds. We can hardly believe it!
He's up to 18 ml (0.63 fluid oz) on his feeds, every 4 hours (he'll be at 20 ml or above tomorrow). One nurse told us he'd have to be up to 70 ml (2.47 fluid oz) per feed before he can go home. Slow and steady wins the race, right?
Tomorrow, Connor will be FAMOUS! We've signed a release to allow a local newspaper (not sure how local) to come photograph our little guy for a story on the future of nursing, how the hospital brings in high school students to shadow RNs. Not sure what exactly it will entail, but we figured it would be something nice for his virtual scrapbook.
They can't determine why Connor is continuing to have desats. He's still on the nasal cannula, but requiring low flow and oxygen levels. He's had samples taken for bacterial and viral (RSV) cultures. All kinds of bloodwork and bood transfusions have been given. He's had chest films and head ultrasounds taken. They stopped p.o. feeds last week, and everything is going through his NG tube. Each feed now stretches out over the course of an hour, to see if that helps, and his crib mattress is set on an incline. The desats are always self-resolving, and have at least begun to decrease in frequency... but they're still occuring enough for him to need the nasal cannula. So far, everything is kinda pointing towards reflux.
After his photo shoot tomorrow, Connor will have a video swallow study performed. I'll be able to be there with him, and I'm expecting he's going to pretty much hate it. Wish us luck!
Sly smiles - March 5, 2009
My view - March 6, 2009
Extreme close-up! - March 6, 2009
Lanugo all gone... that hair's all his - March 8, 2009
Whatchu lookin' at? - March 8, 2009
Lately he just LOVES getting his temperature taken - March 9, 2009