Holding strong

Riley is still negative for infection!! He'll continue to get antibiotics until next friday (14 days from the day they got the negative culture) and then he shouldn't need any IV's. He's up to 10cc of breastmilk and he's tolerating it well. No belly distension and no problems going to the bathroom. He needed to have a new IV line put into his arm again. He seems to be blowing his IV lines daily since starting the antibiotics.

Addison is still on 16cc of the fortified milk. He also receives folic acid, vitamin K, potassium, and a vitamin mix added in. The doctors ordered him to try the 24 calorie fortifier again so tonight, we'll see how he does with it. He was weighed this morning and has gained 10 grams. He's still on room air too!

I'm sure I've missed some stuff but right now, this is all I can remember. I'm exhausted and keep falling asleep while I'm trying to update.

Little bit of good news

Riley's culture from the 11th is still negative for infection!! He needs his culture from yesterday and today to both come back negative before he's considered infection free! After he has 3 days of negatives, he'll continue to get the antibiotics for 2 full weeks. He is up to 8cc of breastmilk and not having any belly distension or aspirates. He was also weighed today and is almost caught up to his brother. He weighed 1lb. 7.8oz.!! Not bad for not eating for so long.

Addison started getting some additional vitamins added into his feedings. He now gets a smelly vitamin mix once a day, potassium (he's back on the diruel), and vitamin K in addition to the 22 calorie fortifier. He had his breaths per minute turned down and was in room air (21% oxygen) for most of the day. That cpap doesn't seem too far off anymore! His lungs are still a bit gunky but they ordered a chest x-ray that looked normal.

Daddy got to read the boys their books today and they both opened their eyes and looked around while he was reading.

Not too much of an update

Last night, both of the boys pulled out their vent tubes. They were both able to be re-intubated without any lasting issues.

Addison is still getting 16cc of fortified breastmilk. Today they added in some vitamin mix and he seemed to tolerate it so far. We asked about trying him on the cpap again and we were told that he has gone back to riding the vent when he goes into deep sleep so they're holding off for now.

Riley is up to 6cc of breastmilk and tolerating it so far. His belly is distended but soft and he's pooping on his own. His culture that came back negative yesterday, ended up turning into a positive culture. He continues to receive 2 antibiotics and they're taking more blood for cultures daily. They're still waiting for the culture from yesterday to come back and they sent another one that won't be back until at least tomorrow. He seems to be on the mend though. His feedings are being increased 1cc every 12 hours so he'll go up to 7cc at 2:30am. His IV also blew again last night and his IV is in his foot again. They don't want to try for a PICC line until he's completely over his infection. They don't want to chance introducing anything foreign into his body when he's already trying to fight infection.

Their ventilator and oxygen settings have both remained pretty much the same. Neither of them seemed to like having their pictures taken today. They both had their hands over their faces and had no interest in showing their faces.

Really good day

Skylar and I did lots of running around to get everything ready for his birthday party tomorrow. We had to make an extra stop at babies r us and Skylar found these adorable preemie outfits that were on clearance for $3 each so of course, I couldn't say no and we got one for each of the boys. Hopefully they'll be wearing their new outfits for Skylar's birthday tomorrow. We were out way longer than I expected and it was so nice to go see the boys and just be able to relax with them.

Probably the biggest, and the best update for the day is that Riley's culture from this morning came back NEGATIVE for infection! They'll continue antibiotics until he's had 3 straight days of negative cultures. He's tolerating his feedings well and at 2:30 this afternoon, his feedings were increased to 4cc. He hadn't pooped since he started getting breastmilk again and the nurse was talking about giving him glycerin but his body decided to start working on it's own. His nurse today was awesome. She let me be very hands on with him. I got to change his diaper, clean his mouth, take his temperature, and hold the syringe for his feeding. It's the most hands on I've been with either of the boys. His IV blew again and they were able to get one in his left arm again. They seem to last longer in his arms so hopefully this one stays for a little while.

Addison is holding steady with his 16cc feedings. He had spit up a little bit this afternoon because he decided to pull out his feeding tube. After getting cleaned up, he was wide awake. Normally when we go in and they have their eyes open, they're kind of twitching around and their eyes are fluttering. Today, Addison was just calm and looking all around. I stood by his side and just held his hand and talked to him. For the first time, I felt like he knew I was there and it felt great!

I got to spend a good amount of time with each of them. We don't always have a lot of time and I sometimes feel like I'm neglecting them because we kind of go in, get an update on each of them, say a quick hello, and then head out.

good morning so far

Ian and I had to go visit the boys early this morning since I have to be here from 11-3 to wait for our new washer to be delivered!
Addison is still doing great with his feedings. He is now up to 16cc, every 4 hours. Get this, he was weighed this morning and is now up to 1lb. 9.4oz!!! He also got his first bath yesterday. There have been no lasting problems from when he pulled out his vent tube. His oxygen level continues to stay in the mid 20's and his breaths per minute have been turned down.
Riley is still getting 1cc and tolerating it. He has not been weighed since the other week. He's still getting antibiotics and we are waiting to hear if his culture from this morning is still positive for infection. He's still getting 50bpm and his oxygen levels go between upper 20's and low 30's.
In my rush to get out of the house and get the kids delivered to their various destinations this morning, I forgot to take my camera. I have to take Skylar out to go pick out some stuff for his party and I'm hoping to have enough time to swing over there again. We didn't get much time there this morning and I feel guilty only spending 15-20 minutes with each boy.

doing alright

So, the boys continue to stay stable. Addison continues to tolerate his 22 calorie fortified breastmilk. He hasn't thrown up or have the slightest problem since yesterday. When we went to see them today, Addison was wide awake but lying on his tummy. He kept pulling up his head and trying to move around so I kind of cuddled him in my hands to get him to settle.

Riley is still tolerating his 1cc feedings. He's been getting 1cc, every 4 hours, since yesterday afternoon. It may not sound like a lot, but every little bit of breastmilk will help him get stronger.

Sorry about the major glare on the picture of Addison. It's sometimes hard to get a picture through the isolette but I wanted to show this one so you can see how tiny he is in relation to my hand.

I wanted to add to this post instead of starting a new one. We called this evening to check in on the boys and got quite the update.

Addison decided that 6pm seemed like a good time to pull out his ventilator tube. Just this morning, I had asked about holding him and they expressed concern that he might pull out his tube and that it was traumatic to put a tube in. That was all I needed to hear to convince me that they needed to be a little stronger before I held them. So, back to this evening. Apparently, when a tube gets pulled out, it often leads to more problems like not tolerating feedings, needing higher vent settings, sometimes infections, etc. After he was intubated, he fussed for about 20 minutes, made a major poop, and took his next feeding. He, knock on wood, didn't seem to have any lasting issues with being re-intubated. He is now up to 15cc (3 teaspoons) of breastmilk and still getting the 22 calorie fortifier. He is down to 28% oxygen and his ventilator is set so that it's only giving pressure when he's not breathing on his own and he hasn't had to "ride the vent" in 2 days! He's been off of the lasics for a few days but he's also now off of the diruel.

Riley is still tolerating his 1cc of breastmilk but his IV blew again tonight. They were able to get a new line in his foot but they are talking about trying again to get a PICC line. He is still on antibiotics (now on an infection specific antibiotic) and his cultures are still coming back positive for infection and they'll continue to take cultures until they come back negative. He's still set at 50 breaths per minute and is at 33% oxygen.

3 weeks old!

So, I went in to see the boys this afternoon. As I walked up to Addison, I saw he was dressed in an adorable preemie outfit. It was so big on him but yet, he looked so cozy. I was saying hello to Addison when I noticed a group of people standing around Riley so I headed over to see what was happening.

Riley's IV had blown and they were trying to find a vein to put in a new line. I stood there and watched as they managed to get the IV into his left leg, just above the ankle. As his nurse was trying to get the new IV started, I was asking about his day. His belly was still a little bit distended but it was soft so they started giving him 1cc of breastmilk. So far, so good. He didn't need any additional x-rays or bloodwork. Still on the antibiotics and the infection is not getting any worse. He had to have his breaths per minute upped from 45-50 but that is normal.

So, while I'm watching over Riley, I notice people starting to crowd around Addison's isolette. I go over and apparently, he'd thrown up his whole last feeding. The nicu head nurse immediately ordered a cbc and a crp to rule out infection. I called later this evening and got the results and they're all normal. They believe the reason he got sick was because they added a stronger fortifier into the breastmilk. This new one upped the calories to 24, from 22, and they thought he wasn't ready for that. His 2 previous feedings before he threw up, were with the new fortifier. He was ordered back down to the 22 calorie fortifier and has been doing great ever since. He's had plenty of poops so they don't believe there's any problem with his gut or intestines. We were also told this evening that his oxygen level was down to 28%! That's the lowest it's been in days! When I talked to the nurse, he was wide awake and looking all around. Apparently he likes to be awake in the evenings. Riley, on the other hand, was sleeping peacefully on his tummy.

Tomorrow is Ian's birthday and he took the day off so we'll be spending some extra time with the boys.

Quick morning update

Ian called to check on the boys this morning and we got a surprisingly good update :)
Riley's x-rays last night were looking better and because of that, his x-rays for this morning were cancelled. He's had to be suctioned a little more than usual but overall, his oxygen and all other vitals have been stable. It seems that they caught the infection early enough to avoid major problems.
Addison is tolerating all of his feedings. He gained an ounce!! He's now up to 1lb. 7oz.!! They may increase his feedings be 1cc. He's also not getting the lasics because he's peeing and pooping so well on his own!
Skylar was up at 1:30 this morning with a fever and a pretty heavy cough. I'm not sure if we're going to go visit the babies today because the last thing we want to do is introduce anything contagious into the nicu. Go figure, we're healthy for months and now everyone gets sick. Hopefully he just has a little bug and after resting on the couch for the day, he'll be back to himself tomorrow.

wait, wait, wait

Waiting for test results to come back can really test your patience. Riley is still as stable as can be. His initial cultures did come back positive for an infection. They took a sample to test for pneumonia and did a spinal tap to rule out meningitis (the initial results of that didn't show an elevated white blood count so that's good news). He's still receiving both of the initial antibiotics. The doctor showed us his past few days of x-rays and explained all different types of things. We were able to see where his right lung had partially collapsed (and has since healed) and we were able to see that there are no intestinal problems. They're going to further test the culture to pinpoint the exact cause of infection. As we were getting ready to leave the nicu today, the lab did call to say they had identified a specific bacteria and I can't remember the name of it but it's some sort of minor staph infection and the doctor said that it's a common, weak infection that is easily cured all of the time in the nicu. So, we've got our fingers crossed and we're hoping for the best but prepared for things to get worse before they get better. His feedings are still on hold and although his belly is looking better today, it's still a bit distended.
Addison seems to be on a fantastic roll right now. He started getting the fortifier added to the breastmilk and is tolerating it well. They add the powder right into the breastmilk and it ups the calorie content to 22 (breastmilk has an average of 20 calories) which doesn't seem like a lot, but when you're barely 1lb., it makes a huge difference. They're also adding potassium and I believe vitamin E into the milk. The vitamin E is believed to help the eyes and lessen the chances of them having the retinopathy and the potassium is to make up for the potassium he loses because of the diuretics.

And one step back...

Well, we got our first phone call from the nicu today. About a half hour before we were going to head in to see the boys, the head nurse called to tell us that they suspect that Riley has an infection. They did some bloodwork and are waiting to see if anything grows from a culture they took but in the meantime, they've started him on 2 antibiotics that cover the majority of the problems that preemies have.
When we got to the nicu, we were able to sit down and ask more questions. The good news is that his lung is looking better. He has gone back to no feedings until they figure out what is wrong with him. They're watching for a few different things and doing x-rays multiple times per day to check his lungs and his stomach. They don't have any reason to believe that it's anything like pneumonia and his afternoon x-rays all looked the same as the x-rays from this morning. We're nervous and scared and we hope that whatever it is was caught early enough that it doesn't result in a major problem.
Addison, on the other hand, is doing well. He is up to 14ml now and starting tomorrow, they'll add fortifier and potassium into the breastmilk. Hopefully he'll tolerate the extra stuff and continue to grow.
So, because of how fragile the boys are, we've stopped allowing extra visitors into the nicu. Ian and I will be the only people who actually go in and go up to their isolettes.
Please just keep Riley in your thoughts. We're really hoping this doesn't turn into anything major. No pictures today, the last thing we wanted to do was bother them.

Boys were baptized today

Today we had a pastor from a church that Ian used to go to come and baptize the boys. Ian felt it was important to have done, just in case anything would happen. It was a nice and quick little thing and the pastor is a very nice man who we've known for years.

So, notice anything different about Addison??? He's got NO IV's!!!!! His IV blew last night and as of 6pm today he'll be getting 12ml of breastmilk. By tomorrow afternoon, he'll be up to 14, his magic no IV amount. When his IV blew last night, the doctors decided to just not put in a new one since he's tolerating his food so well. He's peeing and pooping with no problems. He is still getting his breathing treatments and his lungs still sound a bit crackly but that's totally expected.

Riley still has his IV in and is now up to 4.5ml of breastmilk. He is still having a little bit of trouble with his lung. He's currently not allowed to lay on his right side because his right lung is the one they're having problems with. He's still staying around 30% oxygen and he responds really well to his breathing treatments.

We're very proud of how far they've come in the short amount of time.

Somewhat of a signifigant 4th of July update

Today we were finally able to sit down and have a real conference with a nicu doctor. One of the doctors volunteered himself to be the boys "primary physician" while they're in there. We'll have all of our meetings with him and he'll be the doctor we go to with any important questions.

So, first, the daily updates...

Addison is still tolerating his feedings. He's at 11ml right now and his magic number is 14. If he can handles 14ml feedings, they won't need to run iv fluids. If he's able to handle 14ml feedings, they'll start adding extra vitamins to the breastmilk to help him put on weight.

His ventilator seems to be pretty steady. He was turned up to 47% oxygen. That's the highest he's been that we know of but the doctor and nurse still insist that it's not that high.

Riley has started to get food again. He was getting 3.5ml and had only had his first feeding a few hours before we got there. His lungs sound better and his x-rays seem to show no problems with his belly. Riley's nurse told us that he was awake all day. When she came in at 10:30, he was wide awake and when we were in to visit, he was looking all around!

Riley is holding steady at about 30% osygen. He was down to 28% when we were there and very rarely has to go above 35%.

So, onto the meeting with the doctor. Forgive me if some things are somewhat confusing. We were thrown a lot of medical talk today and while the doctor did explain it, things have become jumbled.

We talked today about the boys lungs. Both of them show damage to the lungs which is unavoidable right now because they're exposed to the ventilator and oxygen. Riley did have an x-ray show that he has a partially collapsed lung but that they're not going to over ventilate to try to force the lungs all of the way open. We were told that they had chronic lung disease but that over time, the lungs should heal themselves. The doctors goal for the boys right now is to have them off the ventilators within the next month (what would be 32 weeks gestation).

Because of how early they are, they're both at high risk for retinopathy and they'll be screened for that at 6 weeks of age. If they're able to catch it early enough and it's not advanced, laser surgery is done and almost always successful. There was talk of a chance of the babies needing glasses and if the laser therapy didn't work, it could result in blindness.

He also told us it's no longer a matter of "Will the make it through the night?" and now it's, "What kind of progress is being made and what's the prediction for quality of life" It made us feel good that we can now go to sleep at night and not expect a phone call in the middle of the night. Our babies are stable and overall, everyone is happy with their health, they're just little and they need to learn how to work. He also said that their chances of making it were dramatically increased. He said the one thing that he would be concerned about right now, are brain bleeds and the fact that both of our boys have shown no brain bleeds is great. He said there's a very small amount of babies that are born this early and don't show any type of brain bleed.

We left the nicu today with smiles on our faces and we had a lot of questions answered and concerns addressed.

Another easy update

Nothing much to report for today.
Addison is now getting 9ml every 4 hours. His ventilator remains about the same and his oxygen is at about 40%. He is finally pooping on his own so there seems to be no need for glycerin anytime soon. His magic breastmilk number is 14ml. When he's tolerating that, he'll no longer need his iv fluids.
Riley is still not being fed. His nurse was at a meeting when we were in so we only got a quick update as we passed her in the hallway on our way out. He's still on about 30-35% oxygen and he had a pretty uneventful day.

just a few changes

Addison is doing wonderfully with his feedings (although he's still needing some glycerin to help him poop) and is up to 7ml every 4 hours. He gets increased 2ml every 12 hours so at his 2:30am feeding, he'll be up to 9ml! We talked to the doctor late last night to get the results from his head ultrasound and I'm happy to report that there are still no signs on brain bleeds!

Riley was having some tummy troubles and his feedings have been stopped for now. His tummy is distended even though he's pooping with no problems. He's not giving much food back either so he may just need a break. They had to take off Riley's shirt only because they need to measure his belly so often. Hopefully he'll be nice and cozy in it soon.

They both have their iv's in and they're both holding steady at about 30-35% oxygen.

I didn't get to hold either of the boys today. Hopefully before the week is over they'll get the ok to be held.

2 weeks old!

They are both doing really well right now. The doctors and nurses are happy and that makes us happy :)

Addison finally needed to have his iv changed last night. They were able to get one started in his other arm but they also needed a second iv site for his second blood transfusion. They were able to start a second line in the other arm but in a different spot from where the original iv was. They plan on keeping his second site in (even though he's finished his transfusion) in case his current line needs to be changed. He is tolerating his feedings well and is up to 4ml with the amount constantly increasing. They are getting less and less green stuff back.

Riley also needed a new iv site last night. They were able to put one in his other arm. He is doing great with his feedings and when I was in to see him this afternoon, he was getting 6ml, with plans to jump to 7ml at his evening feeding. They're goal for Riley right now is to keep upping his feedings until he no longer needs iv fluids. He needs to be tolerating 10-12ml, every 4 hours before he can be taken off the iv. As I was getting ready to leave this afternoon, I asked Riley's nurse if I'd be able to hold him this week and she said she was pretty sure that he was ready to be held!!! She's going to talk to the doctor about it tomorrow morning but she said as long as they're stable, they're almost always able to be held.