Oliver's NICU photo shoot (Nov 16, 2012)



While Oliver was in the NICU, I came across the website for Pictures of Hope Foundation. http://www.picturesofhopefoundation.org/  This is a group of photographers, most of whom had previously had a NICU baby, who will take complimentary pictures of babies in the NICU.  I contacted one of the photographers listed in the area, Lisa Hodnet, and set up a photo shoot for Oliver.  This was really nice, because one of the things you miss out on in the NICU is both a hospital photo, and newborn pictures.  We have both for Nathaniel.  Oliver was 2 1/2 months old, and weighed about 4 1/2 lbs at the time of these pictures.  We wanted to share a few of our favorites.

Oliver's nurses were so creative, and were always coming up with new crafts for him.

Oliver's first room, he was in it until right before Christmas when the light switch on the wall started buzzing.
Then we moved to a private, twin room.  It was bigger, which was nice, but it was so secluded that I always thought we were going to get forgotten.

He loved his fishy mobile

Not real thrilled to be disturbed.

By then he was in his big boy bed.  He had to be able to maintain proper temp to get moved out of the giraffe bed.

Oliver had a pulse ox monitor on his foot, which got switched back and forth between feet at every set of cares.

He also had three leads on his chest to monitor his breathing.

He loved laying on his tummy.  Then they send you home and tell you back only.

This was the only preemie outfit we bought for him.  It had little blue elephants on it.  It got lost in the NICU laundry.  Lesson learned :(

We thought we would have these back in time for Christmas, so we got a few in his stocking.

Getting all tucked back in.

Firm pressure on his chest and head was the easiest way to calm him down.  I wish that still worked.

Even Nathaniel got in on it.  By then he wasn't allowed back in the NICU, so this was out in the waiting room.
 He's such a ham for the camera.

First week home

Oliver has had a pretty good first week home. David and I struggled with it more than he did. And then Nathaniel picked up a stomach bug. It's been super hectic, but great that we no longer have to make the hour drive out to the NICU every day.

Oliver had an eye appointment on Tuesday, Jan 22 to check his retinopathy. So far, it's looking really good. He doesn't need to go back for two weeks this time. Which is great because they just take so much out of him. Dr Oliver really doesn't expect much more improvement. As it stands, when he has the surgery very little of his peripheral vision will be lost. No matter how long we wait, that really won't change. The only reason to wait is to continue to see maturation of his lungs. The longer we wait before intubating him, the better his recovery time on the vent will be. Dr Oliver and Dr Mathias both think we have one to two months before the Avastin quits working and the progress stalls or regresses. At that point, the laser surgery will be done.

On Thursday Oliver had his first follow up appointment at Children's Hospital with Dr Rosenburg. It went really well. O was up to 10 pounds even, and measured a little over 20 inches. He's coming in at the 50th percentile for weight, but only the 10th for height. Sounds a bit like Nathaniel. The doctor and the nutritionist, Kim, gave me the go ahead to both start trying to nurse again and give him breastmilk by bottle. I had told them that my major goal was to get him off formula, and they both agreed that would be best for him. It's going to be slow going, but I was so happy to hear that there is no danger in trying.

Thursday night Nathaniel's stomach bug came back with a vengeance after 40 hours puke free. And to add to the fun, David came down with it too. So far, O and I are germ free.

Saturday, we had our first full family outing. We went out for family pictures. It was a bit of a disaster. The photographer was locked out of her studio, so we took pictures in the hallway with her three kids and another family who showed up too early. Nathaniel is usually a ham for the camera, but he was subdued and wouldn't smile for anything. Her kids wanted to see the baby, so I had to keep moving him and telling them that he was sick so they needed to stay back. I really hope at least a few of them turn out, or the stress from it just wasn't worth it.

This morning Oliver pulled his feeding tube out, so we declared today a tube free day to see if it helps with the bottle feeding. I feel like his tube causes him to gag a lot more often, causing him to spit up more. Fingers crossed today goes well.

Nathaniel playing with my Ipad.

Coming home: 20 weeks old

Oliver is home!  We had originally planned on bringing him home on Tuesday, Jan 15, but that day didn't go so well.  I spent the night with Oliver in the NICU Tuesday night, and Wednesday morning after dropping my dad off at the airport David came to pick us up and take us home.  Oliver came home weighing 9 pounds, 11.8 ounces and was 19.5 inches long.

Nathaniel has done so much better than what I had anticipated.  I figured he would be jealous and clingy, but he's adapted really well.  I also was worried about him wanting to touch Oliver and all the gear that came home with him, but he's content to watch him from a distance and wave to him.  Thank goodness Oliver got used to sleeping through all sorts of noise in the NICU, because Nathaniel likes to yell "baby!" every time he sees Oliver, and "baby nigh-nigh" when he sees Oliver sleeping.

Oliver seems to be adjusting to being at home fairly well, but has been fussier than he was in the nicu.  The visiting nurse assigned to him said that was typical for the first week.  Oliver came home on oxygen, a feeding tube, and a pulse ox monitor.  Our living room is full of cords and tubes.  He's doing just great holding his O2 sat, which we expected.  He's still having a really hard time with bottle feeding though.  As of right now he's taking about half of his food by mouth.  The remainder he gets through his feeding tube via a pump.  It's been challenging to learn all the extras that came home with him, but the most challenging is trying to feed him.  He wants to eat by bottle so bad, he just struggles with it.  But he almost instantly starts choking, and it scares him, and then he doesn't want to try any more.  We're hoping he grows out of these difficulties.  If not, his NICU doctors suggested when he has surgery to repair a hernia, he also gets a gtube placed in his stomach for more direct feedings.  I really, really hope he starts to get the bottle soon so that we don't have to go that route.

Oliver was on a really good sleeping schedule in the NICU, and I'm hoping he sticks to it.  So far he's been a little off, but again it's his first week and I'm assured that's normal.  I get next to no sleep when I try to sleep near him: he's loud.  He grunts almost all night long.  I'm sure I'll get used to it in time, but right now, I'm one tired mama.  Luckily David is able to take baby duty on the weekend nights since Oliver isn't breastfeeding, so I get a little more sleep. 

One thing we didn't bring home from the NICU with Oliver that we could really use is his day nurse, Veronica.  We're just going to have to figure out how to do all this ourselves.

The weather here has been beautiful this weekend, so we were able to get Nathaniel out of the house and over to the park.  He found a soccer ball, and couldn't have been happier.  One of his current favorite words is happy, so he runs around singing "happy, happy, happy."  He's such a good boy, and is going to be a great big brother.  Just as soon as he learns the meaning of "gentle."

Oliver says he's happy to be home

20 weeks, one day left to go

In the past 4 days, Oliver has passed everything he needed to to get discharged. His room air challenge went well enough that he won't need to go home on a monitor (not sure I'm so happy about that). His car seat challenge went so well that he continued to sleep in it for an additional 2 hours. He has perfect hearing, and everything looked great for discharge. We had originally planned on taking him home today, the 15th, but after a little trouble this afternoon we decided one more night was in order.   I'm rooming in with him tonight.

But it's official, on Wednesday, January 16, 2013, my boy is coming home!

19 weeks, leaving the NICU soon

In nicu speak, today is "day of life 136."  136 days in the hospital. It looks like his stay will be ending on day 140. They have finally told us that we can bring our boy home.  Oliver weighs 9 lbs now, a huge change from his original 610 grams.

I had requested a week's notice of discharge, and was promised it, but yesterday I was told to expect discharge on Monday. We still have a lot to do around the house to prepare, and not a lot of time to do it. Oliver will be coming home on oxygen, so we need to have a concentrator set up. He will still need to be fed through a tube, so we have to get a pump set up. And if he doesn't score well on either the room air or car seat tests, he'll come home on a blood oxygen monitor. David and I still have to be taught how to use all these things, as well as go through infant cpr training. And we have three days to get this done.

All of this, however, is still dependent on Oliver's eyes looking stable at tomorrow and Monday's exams. As of this week, his eye dr felt he was at least a month away from surgery, and that he was stable enough to move to weekly outpatient check ups. That could easily change, but hopefully they're still looking that way

In 1-2 months, Oliver will also need hernia surgery. If at that time he still is using the feeding tube, his doctors are recommending placing a more permanent g tube for feeding. I'm praying this doesn't happen. Several nurses and even the physical therapist have said that getting away from the stress of the nicu can be enough for some babies to figure out eating. They did a barium swallow study this week, and it showed that when trying to swallow an unthickened feed, the milk moved towards his nose and close to his trachea before he choked it back down into a position where he could swallow it. The thickened feeds still gave him some trouble and he adds an extra step into swallowing, but it doesn't show the risk of aspiration.

Today should bring the car seat test (45 minutes in car seat, sats can't fall), room air challenge (he needs to fuss when oxygen is removed before sats drop below 80%) and an eye exam. If all goes as hoped, we should be on the final countdown towards bringing our baby home.

18 Weeks

Oliver is 18 weeks old now, or two weeks adjusted.  He weighs 8 1/2 pounds.  Last week David and I met with Oliver's medical team for a Care Conference.  We discussed the possibility of bringing him home even though he isn't eating by mouth fully yet.  Nothing could be decided for sure, since we were still waiting on another eye exam, but it was good to hear that we were getting close.

Oliver's eye exam was on Monday, and the left eye was looking great.  His eye surgeon felt that it still had several weeks before needing surgery.  However, his right eye needed action immediately.  While they had originally told us that the Avastin injections were one and done, they now felt that a second injection could possibly bring the right eye up to where the left eye had gotten to.  Or, they could go ahead and do the laser surgery on both eyes.  Surgery immediately meant that the frequent eye exams would be over, so we'd be able to bring him home as soon as he recovered.  But, it would mean a loss of peripheral vision that could be saved by waiting a little longer.  We decided that his vision was more important than bringing him home a couple of weeks earlier, so on Tuesday they injected the right eye with a second dose of Avastin.  Because Avastin is still in the research stages of retinopathy treatment, they can't give us any guarantees, but since the first injections helped so much, we're hopeful. 

As of his eye exam on Friday, his eye is looking like it's making more progress.  They will do another exam on Monday, and if it still looks good, we'll start discussing bringing him home. On Friday he weighed 8 lbs 11.5 ounces!

If we bring Oliver home in the next few weeks, he'll be coming home on a feeding tube.  He's still taking thickened formula for his bottle feedings, taking from 15 to 50 ml at a time.  Since he's now on a 4 hour feeding schedule, he gets 90 ml at each feeding.  So the remainder of what he doesn't take gets put through the tube.  Several of the nurses have said that almost as soon as the kiddos get settled at home they relax and get the bottle thing down right away.  Right now, every second to third bottle is given by someone different.  I'm there for his 1 pm bottle every day, David's there for 1 or 2 on the weekends, and then he has a different nurse come on every 12 hours.  They believe once it's just David and I doing all the feedings, he'll get the hang of it.