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.

Wonderful update!

I was finally able to go in and see the boys!

I walked up to Addison's isolette and his eyes instantly opened. He didn't really look directly at anything but he fluttered his eyes around most of the time I was with him. He is still tolerating most of his feedings. He had a little bit of green stuff come back at his feeding this morning but it wasn't enough for them to stop feeding him. He is getting 2ml, every 4 hours. He hasn't pooped since yesterday and they think it may be part of the reason he's not handling his feeds well. They were going to give him some glycerin to see if that helps.

His lung and stomach x-rays were 100% normal! The wheezing is gone and the murmur hasn't been heard in days! He has his repeat brain scan tomorrow to check for brain bleeds but we're not as worried as the first scan since 75% of brain bleeds happen in the first 3 days.

His IV is still in place and the doctors are amazed. They've talked about trying to do another PICC line but if he tolerates his feedings well enough, they hope to just avoid the PICC line and wean him completely off the iv meds. Also, as soon as he stops having tummy troubles, I'm allowed to hold him! He was weighed today for the first time since birth and is now up to 1lb. 6oz.! He gained back whatever weight he lost after birth and then some!

Riley does have his eyes open but the little bugger kept them shut the whole time I was there. When I initially went up to him, he was sound asleep on his tummy with his little bum sticking up in the air. He was not too happy when we woke him for his diaper change and feeding. He is getting 4ml of breastmilk right now and starting tomorrow, he'll be getting 5ml (1 whole teaspoon!) He is tolerating them really well and very little is coming back up. He had his second brain scan this past Friday and everything was all clear! Riley was weighed today also and it now up to 1lb. 4oz.! He also still has his original IV in from this past Thursday and the doctors are also trying to hold off with another attempt at the PICC line, in hopes that he'll tolerate feedings.

Riley got start wearing his little shirt today! His nurse put it on while I was there and although his one arm can't go through the sleeve (because of the iv), he looks cute as ever!

Neither of the boys are showing any signs of an infection which hopefully means that they're in the clear from catching whatever the heck I had.

Sunday morning

I'm on the mend but now Ian has come down with what we believe to be the same thing I have. I'm staying away from the nicu for one more day just to be sure that I'm not running a fever and until my lab results come back tomorrow.
Addison has resumed feedings! He's now getting 2ml of breastmilk and so far he's tolerating them well. He had an x-ray this morning to check his lungs and stomach but again, only the doctor can give the results and she was busy. We went back to our favorite saying, no news is good news. Addison's iv is still in place which is amazing considering the nicu nurses said they usually need to be changed every 1-2 days.
Riley is also tolerating his feeds. He's still under the bili lights and should be out from them tomorrow. He has spent a lot of time resting. His iv is also still in place. His stomach is still a little bit distended but he's going to the bathroom just fine and not showing any problems.

Small evening update

I am finally able to kind of talk so I called the nicu and was able to get an update first hand.

Addison is scheduled for an x-ray tomorrow to look at his lungs and his stomach. He is still on hold with his feedings. Otherwise, he has remained stable throughout the day.

Riley is back under the bili lights. We were told this is common after a blood transfusion. They plan to keep him under the lights for one more day. He has remained stable and is getting about 30% oxygen. He is tolerating his 1ml feedings so far and even pooped without the help of glycerin.

My sister stopped by the nicu to pick up bottles for me and she handed her phone off to one of the nurses and she got a picture of each of the boys for us. Addison's eyes are open but of course, he was sleeping when they took the picture.

Ramshackle update for Saturday...

Lindsey is still very sick, but slightly better today, and we are going to try some soup. I was able to do all of the laundry, vacuuming, and a softener salt/tissue/med run before I started to fall ill myself.

My mother, father, brother, sister-in-law and niece are out playing with Skylar and Leah all day, which couldn't have been better timed. THANK YOU, MOM!

There is quite a bit of news to dish out.

Riley:

Right eye OPEN! Second cranial/renal ultrasound NORMAL. 30% oxygen. Still using the same peripheral IV. No sign of infection, and the antibiotics are done. Feeding attempts are resuming today... and we pray and hope for further good news this evening.

Addison:

I will dispense with the bad news first. Due to some green aspirates and distension they are halting Addison's feeding regimen for now. He continues to be stable, and is on 28% oxygen. BOTH of his eyes are open!! His second ultrasound will be on Tuesday, but they have no reason to expect anything but a normal result. They have NOT heard his murmur for 3 days now, and this might indicate the duct has closed of its own accord. He still has the same peripheral IV in, so not more pokes or prods. He's sleeping on his tummy right now.

Overall this was a day full of good news, and I'd gladly trade my health for the babies' any day of the week.

We are lucky to have such a caring and dutiful son who for some reason delights in caring for the sick, as we will surely need a hand later today and when the babies arrive. Even little Leah likes to fill the water bottles with ice and water for us. They ought to be back soon.

Thank you everyone. Lindsey's sister will be picking up some more bottles at the NICU and is going to ask the nurses to take some pictures of our boys as we can barely stand not seeing them for this long.

I'll post them should they materialize.

Ian

QUICK update...

Lindsey is home, and the doctor has ordered a throat culture and urinalysis to determine the culprit. They believe it is either strep throat or a bladder infection... She is once again immobile on the sofa, and her medicine will be ready for pick up in an hour.

LATE morning update...

It has been a very busy day for me, and I am just finding time to post an update on events.... So:

I awoke early this morning already having the hospital trip and some other personal things requiring attention, and had scheduled a work-from-home day.... Which went smoothly from around 5-9. Leah and Skylar awoke in that order (Big Brother likes to sleep. A lot... Leah, not so much)

Lindsey was still sleeping on the sofa from the night before, and not thinking anything off it I packed up the kids and stole away to do the errands.

As I was about to head home I got a call from Lindsey who's voice BARELY audible. She was extremely ill, and couldn't even make it up to the shower. When I arrived home I had to help her about a good bit and then her father took her off to the doctor. That was an hour and a half ago. I certainly hope that it's nothing extraordinary, but need to write an update on the kiddos before I pop.

Addison's lungs seems just fine after the albuterol and z------x(?) he received yesterday. They couldn't detect any fluid or wheezing whatsoever. In addition, his murmur has been conspicuously absent for 2 days now. His feedings continue to increase, and his IV is holding.

Riley is still distended a bit, but is showing no fever or other signs of infection. The antibiotics will continue for a few days, all the same, while they culture the samples they took from him yesterday. I am waiting to hear the results from his x-rays earlier today.

Everyone is stable, and no one has so much as dropped below 80% oxygen levels in the last 24 hours.

Lindsey's sister was kind enough to stop at the NICU and pick up additional bottles, bags, and supplies that we were needing.

I hope that I am able to visit them tonight, but Lindsey is not capable of even supervising the children, let alone actually caring for them.

That is all for now everyone. Thank you for everything as always.

Ian

Evening update...

So today was our first really saddening day from an update perspective... I mean every day your child is in the hospital is somewhat sad, but the lack of forward progress and general problems of the day was a real upsetting thing for us.

When I arrived home Lindsey was very ill, feverish, and immobile. She barely was able to ask me to call the doctor to cancel the appointment. If she is still anywhere near this sick in the morning I will drag her over to her doctor.

On another note, I had a temperature of 99.5/6 consistently which was just enough to really make me doubt my health. Suffice it to say that neither of us saw the babies, which is a first and as it turns out? A very difficult experience.

I was able to speak with the Nurse Practitioner who was on site at the NICU today and she informed me that Riley's PICC line attempt was, as Addison's, unsuccessful. Riley is feared to be septic, so is on a 48-72 hour regimen of antibiotics. Both of them had "air leaks" today, cause by the fact that their airways outgrew their intubation prosthesis... so, they were up sized to a more "air tight" tube, and have since been more stable from an oxygen saturation perspective.

The staff have been very, very good to us, and willing to make sure SOMEONE can answer any question that we have. After a 30 minute conversation, the NP told me to call as much as we have to to sleep tonight... which we probably will.

Leah and Skylar are doing well, and have adjusted to the situation about as much as you can expect a 3&1/2 and 7 year old child to adjust. We are blessed with wonderful children.

Everyone is stable, everyone is safe. We miss them a lot, and can't wait to see and potentially hold them! Having had enough negativity for this Thursday, I'll end with our good news for the day:

Addison continues to accept increasingly larger feedings, and both boys now have "standard" IV lines (like you or I would have in the leg or arm).

Good night everyone, and thank you.