3 months!

Oliver is three months old today!  What a journey it's been so far. Oliver now weighs 5 pounds and 11 ounces.  That's actually down a few ounces from a few days ago, but he's recently started a diuretic so he's losing water weight.  His nurse is actually hoping that without as much fluid on him, he'll both start breathing better and eating better.

Happy 3 months!

Oliver is now down to eye exams every three days.  Dr Oliver is very happy with the progress from the Avastin injections.  He still will most likely need surgery, though.  But the goal is that his lungs will have developed more before that has to happen.  He also most likely needs hernia surgery.  Veronica is concerned about him possibly being put under anesthesia twice in the same time period, so she suggested they do the hernia surgery with a spinal block.  We'll look into that more when the time comes.

Swinging away

Now that Oliver's getting older, he's also getting bored.  Last week they brought in a swing for him to try, and he loved it!  Not bad considering just a few weeks ago he was still so sensitive to movement that even rocking while holding him bothered him.  He's been waking about a half hour before his care times, hungry.  The swing is one of the few things that will appease him at those times.  I'm not sure when they'll move more to an "on demand" feeding schedule. 

We're still hoping Oliver will get to come home shortly after his due date, December 16.  He still needs to meet two goals before they'll consider it.  First, he has to be taking all of his feedings by mouth.  Right now, he eats between half and 2/3 of his feedings by mouth.  When I'm not there, they give him a bottle.  When I am there, we nurse.  He's up to 50 ml feedings, and his two main night nurses, Stacy and Rachel, can get him to take pretty much all 50 by bottle.  During the day, he's not doing nearly as well.  I'm not sure if it's actually a time of the day thing, or a person thing.  When he nurses, we have to guess how much he's taking.  We've tried doing before and after weighings, but he's a mover and a shaker, and I seriously doubt the accuracy of the scale when he's moving so much.  We've also tried pulling the milk out of his stomach through his feeding tube, but there's no telling where the tube is sitting and if it's getting all of it.  We're estimating he's taking around 15 ml, but again, it's a total guess.  He has to get much closer to the 50 before they'll be happy with nursing.

Twice a week we can stay in a "rooming-in room" to be with Oliver for his overnight cares.  Now, with the NICU on lockdown for cold and flu season, we can't take Nathaniel with us, so it means it's just me staying.  It's hard to be away from David and Nathaniel, but great to see Oliver overnight when it's a little more calm in the NICU.  Calm, however, doesn't mean quiet.  And as I'm a light sleeper... it means little to no sleep for mama those nights. We've already decided to donate some of the preemie outfits we have for Oliver to the NICU, but now I'm wondering if I should donate some sheet sets.  The rooming in rooms have either double or queen beds, and the hospital only has the twin sheets for regular hospital bed.  The first night we stayed, David and I thought we'd been short-sheeted.  Nope, just a twin sheet, draped sideways over the bed.

Lots to be thankful for

We are so thankful this year, for doctors and hospitals, for technology both new and old.  People who have offered so much to help us, and David's new job which has been ever so supportive.  And mainly that Oliver is headed in the right direction.  We had a pretty good Thanksgiving week.  Oliver, however, had a pretty rough week.  On Monday when he had his first injection of Avastin, he was put back on an IV and given Fentanyl.  He hadn't necessarily needed the IV, but he hadn't eaten since 6:30 am and the doctor kept running later and later.  By 1 pm, the kid was hungry, and voicing his anger about it.  So Veronica, his main nurse, hooked up the IV to give him fluids.  Since he already had an IV in, they decided to go with IV meds for the procedure. 

It knocked him out!  He got the meds around 2 pm, and when I showed up the next morning at 9:30 am, he opened his eyes for the first time.  Between being so tired from the meds and his eyes hurting from the exam and injection, he slept through the day.  He didn't have any other problems from the Fentanyl, though.

On Wednesday, when they did the second eye, his main nurse wasn't working, and the doctor decided that they didn't need to put him through getting another IV, so they'd just give him oral morphine.  I was able to stay for the procedure this time, since Dr Oliver was able to do it earlier in the day.  While I was holding him afterwards, his heart rate kept falling.  Each time it fell even lower, and it took him even longer to bring it back up.  In the 2 hours I spent with him following the injection, he had 5 Bradys.  The nurse watching him that day decided that my holding him was too much for him, and put him back to bed. 

He continued to have problems with breathing and his heart rate the rest of the day.  Overnight, he actually had to go back on CPAP because he was breathing so shallow.  Thursday, he was still drowsy, but was at least breathing better.  Even Friday, he still seemed to be out of it.  When Veronica got back to work on Saturday, she was very, very irritated that they went with morphine over fentanyl.  I love that she's such an advocate for him.

Oliver is gaining weight like you wouldn't believe.  Less than a week after he hit 5 lbs, he's already up to 5 lbs 14 oz.  I, of course, thought this was great.  His doctors, however, are concerned.  Not that he's gaining weight, but that he's gaining without growing longer.  They believe that indicates a protein deficiency.  Granted, I'm not the best about eating protein, but talking to lactation leaves me believing even if I ate nothing but protein it wouldn't change the consistency of my milk.  So his doctors are now also giving him a high protein formula mixed in with his milk.  He's having a hard time digesting it, so today Veronica had said that she wants to talk to them on Monday about trying a different brand.

We took dinner out to the nurses and doctors working in the NICU on Thanksgiving.  When I walked in, O's nurse told me that he was wearing his Thanksgiving shirt we had brought for him.  Except we hadn't bought him a thanksgiving outfit, and there was no way he was wearing Nathaniel's.  I probably should have taken a picture anyway, but I wasn't a fan.  It said "first Thanksgiving dinner" and then had pictures of jars of baby food.  We don't do purees, so it wasn't a shirt I would have gone with.

We take no part of black Friday shopping.  Instead, we took Nathaniel to the Denver Children's Museum and Hooters for lunch, and then I spent the afternoon with Oliver while David and Nathaniel napped.  Nathaniel had a blast at the museum, even though it was busier than I would have liked.  And the waitresses at Hooters always give him a balloon, so it's his favorite place.

 

    Last week we bought a video monitor since we're soon moving Nathaniel into a twin bed.  I wish we had gotten one much earlier.  The show Nathaniel puts on is sometimes the highlight of my day.

 

ROP treatment cont.

Oliver received an injection of Avastin in his right eye on Monday.  As of yesterday, it had not shown any progress.  The eye surgeon, Dr Oliver, called last night to let us know that if there was still no progress today, he would take Oliver directly into surgery.  Much to our relief, his right eye showed quite a bit of improvement!  So today he received the injection into his left eye.  They will continue to be monitored daily to check on the progress.  Once progress stops, or even just slows down, Oliver will need laser surgery to preserve his vision.  It will destroy any potential for peripheral vision, but not doing surgery puts him at a 30% chance for completely going blind.  We're more than willing to sacrifice his periphery.

Sleepy baby after a rough day





Oliver also had an echocardiogram today.  When Oliver was born, we were asked to take part in a lung and heart study for preemies.  Since the information obtained could have helped Oliver had the study been completed before, and since it did not involve any extra invasive tests, we agreed.  UCH is actually trying to determine if genetics can determine how badly lung and heart function will be affected by prematurity.  They took a dna sampling from both David and I, have and will continue to monitor Oliver's condition throughout his NICU stay, and will do a few follow-ups once he's discharged for a couple of years.  I would have preferred that the echo not be done today, and it's already been a rough one for him, but with the holiday, today was it for him to remain in the study.  He had morphine for the eye injection, so he'll most likely sleep through it, anyway.

On a completely separate note, how cute is this kid?

David took Nathaniel to the park while I was with Oliver at the hospital.  On my drive home I asked David if they had left the park for Nathaniel's nap yet, and he said that he kept asking Nat if he was ready to go home, and Nat kept saying no.  If you ask Nathaniel, the answer to that question, while at the park, is NEVER going to be yes.  Every single exit from the park results in a complete and total meltdown.  Luckily, this kid is pretty happy go lucky and forgets how angry he is once he's in the stroller and the park is out of sight. 

12 weeks old

Oliver is 12 weeks today, weighing 5 lbs and 3 oz.  While his weight gain has been great, his doctors are concerned about his lack of growth length wise.  I keep telling him that's just how my boys roll, but they want to start supplimenting his milk with high protein formula.  Looks like I'm also going to start on a protein suppliment, too.  Yuck.

Oliver's ROP continues to get worse.  This week, his eye team decided to try drug therapy to delay the needed surgery.  He received an injection of Avastin, which is a cancer treatment, into his right eye yesterday.  Assuming he has no adverse reactions to it, he'll get the injection in his left eye tomorrow.  The surgeon is hoping that this will buy about a month so that his eye sight will continue to mature, as well as his lungs.

Other than that, Oliver is doing great.  He's eating well, and gaining lots of weight.  I think we're going to take Thanksgiving dinner out to him on Thursday, not that he can enjoy it, but his nurses can.  We test drove minivans today, hoping we'll have a bigger vehicle by the time we bring him home. 

Nathaniel got a haircut last week.  Doesn't he look like a big boy?

Happy Thanksgiving, everyone!

11 weeks old

Oliver is 11 weeks old today, and is up to 4 lbs 10 oz and 16 inches long.  He's gaining weight like a champ.  He's been nursing well, and last night took 30 ml from a bottle.  He's down to 2 1/2 lbs of pressure on his oxygen, but still desatting (oxygen saturation falling) a couple of times a day, and having a Brady (heart rate drops drastically) or two a day.

Look at those cheeks!

For the past four weeks, Oliver's eyes have been checked weekly to monitor his ROP.  Yesterday, we got a call from his eye doctor that it had changed from moderate to severe.  She recommended surgery, and immediately.  However, when the eye surgeon looked at his eyes today, he felt that surgery could still wait a while, but he wanted a second opinion.  So three eye exams in two days for the poor guy.  I haven't heard back yet on the second opinion.

From what I understand, ROP occurs when preemies eyes aren't fully developed in the womb.  The blood vessels behind his eyes develop differently when they're exposed to oxygen, and they start growing erratically.  If this growth continues, the blood vessels can actually detach the retina from the eye, resulting in the loss of vision.  The surgery would be to laser off the blood vessels that are growing towards the sides of the back of the eyes.  This would result in him losing his periphery vision, but would hopefully prevent the blood vessels from continuing to grow, but it doesn't guarantee that it won't continue.

The scariest part of Oliver possibly having surgery at this point is that it would require him to go back onto a ventilator.  Since his Chronic Lung Disease is still severe, this would be a huge setback.  Every little bit of time that he spends ventilated can cause further damage to his lungs.  And the worse the lungs are to begin with, the longer it usually takes for them to get extubated.

I'm staring at my phone, pleading with it to ring.  I think I'm going to have to start trying to track someone at the hospital down to find out what has been decided.  Here's hoping we have a little longer before we need to start worrying about this surgery.

Is it just me, or does my kid look like Kevin James?

It looks like we're going to need to start Nathaniel in all day daycare so that I can spend extra time out at the hospital.  I was hoping to avoid that, but hopefully we're down to a month or less in the NICU, so it would be for just a short time.  Luckily, he does seem to like it there. 

Fun at the park, even when it's chilly

10 weeks old

Halloween

Oliver is doing so well that sometimes it's easy to forget how far he's come and how far he still has yet to go.  He's up to a little over 4 pounds now, and regulating his own temperature, so he's been moved out of the incubator and into a real crib.  He's eating 37 ml (a little over an ounce) every three hours, and has been able to attempt to nurse a few times.  The lactation department calls him the rockstar of the NICU because he's a natural at nursing.

Big boy bed!

Since it's now cold, flu and RSV season, Nathaniel is no longer allowed to go into the NICU to see Oliver.  For now, we can still take him with us to visit and switch out with him in the waiting room or cafeteria, but if there's a flu or RSV outbreak in the area the entire hospital goes on lockdown and no children will be allowed into the hospital at all.

Big brother



While Oliver is making great progress, two things continue to bother his doctors.  First, his Chronic Lung Disease is not getting any better.  The hope had been that as he grew, his lungs would continue to regenerate and his need for pressurized oxygen would decrease.  Unfortunately, that hasn't happened.  At 4 lbs, he should be on low flow o2, but he still needs 3 lbs of pressure on the high flow.  Hopefully, as he continues to grow his lung growth will start catching up.  The other problem is with his eyes.  He has what is called Retinopathy of Prematurity, or ROP.  Right now it's considered moderate and is being monitored weekly to make sure it doesn't become severe.  At that point he would need LASIK surgery to prevent him from going blind.  Hopefully that starts moving towards the better soon, too.

 

Go Illini

I recently came across the website for an organization called Pictures of Hope Foundation.  It's a network of photographers who are willing to go into NICUs and take complimentary documentary style photographs of NICU babies.  We found a photographer in the Aurora area who is affiliated with this organization, and booked a session with her next week.  I'm very excited to see how they come out.  I wish I had found it earlier, because I'm already forgetting just how little he was at the beginning.  http://www.picturesofhopefoundation.org/