Not much of an update

I've caught a cold so I only went in to the nicu for a few minutes. Long enough to drop off milk, take pictures, and say hello to the boys. They're so close to coming home and the last thing I want is for them to get sick.

They've both been taking their bottles. Addison has had a little more trouble than Riley and tends to have events while eating. He likes to gulp and then he gets air trapped which causes him to de-sat.

So, Addison weighs 4lbs. 2oz. and Riley weighs 3lbs. 4.5oz.

I'm planning on getting a half decent nights rest tonight and hopefully I'll feel better in the morning. I haven't slept more than 4 hours a night in over a week and I'm sure that contributed to me getting sick.

Feeding tubes are gone!

I knew, when I called this morning, that Riley's feeding tube had been taken out. He was due to have it changed and the doctor said to just leave it out. Addison's tube was due to be changed tomorrow so we were hoping that his would stay out as well.

When I went in this afternoon, neither of them had in their tubes. They've both been taking their full feedings (by mouth) for 24 hours. They're also on their maximum feeding amounts (Addison is 44cc and Riley is 35cc) but no minimum. They're allowed to not take the whole amount as long as they continue to gain weight. They're both nursing really well and I'm trying to get in there as much as possible to nurse.

They're both off of the diurell and potassium. The doctor wrote orders to stop the zantac after tomorrow and the only meds they'll get will be the poly-vi-sol, folate, and vitamin E. They're hoping that since the tubes are out, the opening to the stomach will be able to fully close and they won't have reflux symptoms and need to restart the zantac.

Addison is up to 4lbs. 1oz. He's as big as Skylar was when he was born. I remember thinking that Skylar was so tiny and yet Addison looks so big.

Riley is 3lbs. 3oz.

The next step for the boys is to move to an open crib. They don't like to move babies to a crib until they hit 1500 grams. Addison is well over that and will hopefully be moved in the next few days. Riley is just under 1500 and will hopefully be big enough for a crib by the end of the week.

The first picture is Addison, the bottom picture is Riley.

Quick post before I head back to the hospital

I've had one of the worst days I've had in a while. Everything that could go wrong, went wrong. I finally left to go to the hospital and the traffic on the highway was at a standstill. I skipped that adventure and tried to go through the city. All backed up. I ended up going almost 20 miles out of my way to get to the hospital. As much as a pain in the rear as it was, the highway was shut down due to a tractor trailer that has jack-knifed and spilled fuel. All of the side roads were backed up as well so by going through the boonies and out of my way, I made it there in just under 30 minutes.

I get in and the nurse is standing there, holding Addison, and waiting for me to nurse him. Then my night got worse. She told me that she gave him formula! I freaked out. I've got over 1500 ounces of milk in a freezer I bought specifically for the milk. I pump more than 40oz. per day and I'm only 10-15 minutes (when there's not an accident) from the hospital. He apparently got formula yesterday too. He still has his feeding tube in but she said he wanted to orally eat. She gave the same milk that Addison refused, to Riley, and he took the whole bottle. I'm so upset about this. I told them that they are not to get formula but they can't write that on the chart without the doctors permission.

So, now that I've got that out of the way. The boys are doing well. They both gained a little bit of weight. They've been taking more than half of their feedings by mouth and Addison only had one event today and that was right after their eye exams.

They got their eye exams early this morning because when I called to check on them at 7:30am, they had already had them. Riley was diagnosed with stage 1 ROP (retinopathy of prematurity) and Addison was diagnosed with stage 2. They'll get a follow up appointment in 1 week to see if it's progressed at all. They won't do laser surgery to correct it until it reaches a late stage 3 or stage 4. I had some questions about everything but the doctor wasn't available for me to talk to so we'll see if I can get some questions answered when I go back in tonight.

So, that's my update for now.

Haven't posted in a little bit

Things at home have been insane. Skylar's back at school and Leah misses her play buddy. I've been getting very little sleep and having a never ending list of things to do at home.
So, things have been going well with the boys. Riley has hit 3lbs. and Addison is about a half ounce away from 4lbs.
Last night Addison nursed for 35 minutes. He was a hungry little boy and he fell asleep at the breast so we didn't give him any additional food. He stayed asleep until his next feeding so he must have filled his tummy.
Riley is still working on nursing. He gets tired easily and I tend to give him a bottle sooner because I would rather have him take a bottle than get a tube feeding. He's been taking bottles wonderfully. Addison has taken most of his bottles.
No changes in their meds and they're still in isolettes.
They had their eye exams this morning. I have to talk to the doctor for the more detailed results but there were some changes and the doctor wants to follow up in 1 week.
My mom and I took the cpr class so now everyone who might have a chance at babysitting the babies, has taken the class.

Pictures to follow as soon as I stop getting an upload error.

Met with the doctor last night

We didn't get home from the hospital until 9pm last night and I had so much to do to get Skylar's things ready for his first day of school that I didn't have time to write until now.

The boys nurse called yesterday and said that Dr. Brown was there today and not again until Friday, but only during the day. We were due for our next meeting at the end of this week so my mom agreed to watch the big kids while Ian and I went to the hospital. The talk went really well. He's very happy with their progress. He was off for 5 days and he said he was shocked to come back and see them off oxygen and doing so well with oral feedings. They've been gaining the proper amount of weight and their heads are growing appropriately (about 1cm per week. anything between .5 and 2cm per week is considered average)

Over the next week, his plans are to have their feeding tubes come out and to stop their zantac. He's hoping that once the feeding tubes come out, they'll not have as much reflux since the opening to the stomach will be able to fully close. He also hopes to have them both in open cribs in about a week and a half but he said that they probably won't go home after 24 hours. He's planning on having them in open cribs for a few days just to make sure they're most importantly, maintaining their temperature, but also still gaining weight.

He wants them to come home on as little medicine as possible so he also plans to stop the diurell and potassium. They're already on small doses for their size but he doesn't want to stop all of the meds at once. They'll definitely come home on the poly vi sol (smelly vitamins) but his goal is for that to be it.

Dr. Brown also estimates them to be developmentally about 4-5 days apart right now and we may have to make a decision to bring them home at separate times or keep one in for a few extra days so that we can bring them home together.

Tonight, my mom and I will be taking our infant cpr class so parents and grandparents will have done everything to allow them to come home.

So, onto their progress. Yesterday, Riley was 2lbs. 15.7oz. As of this morning, he's 3lb.s 1oz.!!!! He hasn't been too interested in his bottles but that's ok.

Addison weighed 3lbs. 14.8oz. as of this morning. He's been taking all of his bottles. The doctor on this morning wrote orders for Addison to move down to the 24 calorie fortifier. They both will be weaned down to regular breastmilk before coming home. They're going to keep Riley on the 26 calories for now.

I'm sure I'm forgetting a lot. I was exhausted last night and was not planning on meeting with the doctor and things have kind of been pushed to the back of my mind due to trying to get all of Skylar's stuff in order for school. I thought it might be nice to share a picture of Skylar from this morning. He's very proud and excited to be a 2nd grader :)

Feedings are getting better

Riley finally had a nice jump in weight. He weighs 2lbs. 15oz. He's so close to 3lbs. and we're hoping he hits it by Tuesday. Addison gained also and weighs 3lbs. 11.6oz.

Feedings are getting better and better. Addison took half of his 6pm feeding and finished his 10pm, 2am, and 6am bottles. He only took 10cc of his 10am bottle but at 2pm, he nursed for more than 20 minutes. His nurse didn't give him any extra food. He had 1 event last night.

Riley took half of his 11pm and 3am feedings and finished his 7am bottle. He also only took 10cc of his 11am feeding and he had no interest in waking to nurse or take a bottle for me at 3pm. He should be finishing his 7pm feeding any minute now and I'm hoping to call and hear that he finally took a whole feeding.

Now that they're off of oxygen, the boys are portable. The nicu has a nice breastfeeding room that I've used almost daily to pump but I was finally able to take the boys in there to nurse. We usually put curtains around their beds so I could have privacy but the breastfeeding room is dimly light, quiet, and very relaxing.

Their vitamins are this horrible, smelly, brown glop that had been going into their feeding tubes but they've been putting them into their bottles so they get used to it. They were getting .5ml per day but due to their weight gains, they were bumped up to 1ml per day and it all goes into one bottle and if tastes half as bad as it smells, I wouldn't eat it either. Their zantac is also kind of salty taking but they're getting 1ml mixed into their full bottles so it should be diluted enough that they don't taste it.

Addison was increased to 42cc this morning with plans to go to 44cc in 12 hours. Riley was finally ordered a significant increase. He was increased to 33cc with plans to go to 34 after 12 hours. Hopefully he'll continue to gain a good amount of weight.

Every day I start to ask more questions about when they go home. I'm fairly certain that they'll both be on apnea monitors even though they're only having a few events per day. They have to have 5 days of no events to go home without a monitor. I'm ok with monitors though. They're in a little carrying case like the size of a small diaper bag.

Our meeting with the doctor should be sometime this week. We'll start to get a more accurate goal for discharge but for right now it's 2.5 weeks. Their nurse (who's been a nicu nurse for more than 10 years) said she would be shocked if they're still there after 2.5 weeks. She said 2 weeks was a more realistic goal but I'm going to stick with 2.5 weeks.

They're both doing well off of the oxygen and not having any trouble with their oxygen saturations while feeding. Aside from taking every feeding by mouth, their next big goal is to be in an open crib. We're expecting Addison to be in one by the end of the week.

My mom and I are taking our infant CPR class this Tuesday. Ian and his parents took the class last weekend. Once they're close to coming home, we'll spend the night in the nicu overnight room, with the boys, so that we can have time with the twins and alone but still have the nurses and doctors on hand in case we have any questions.

Goodbye oxygen!

Both boys are 100% breathing on their own! No more cannulas! Riley has been off since yesterday around lunchtime and today when we came in at 2, Addison had his prongs out of his nose so his nurse decided to try him without the cannula. He also had pulled out his feeding tube so I snapped a few pics of him with no tubes for the first time ever! He had just been turned down to .5 litres this morning. He de-sated a little bit while nursing but came right back up after letting out a few good burps. Addison now gets 38cc per feeding (or nursing and then 19cc). He has taken a bottle or nursed for every feeding since yesterday morning. He's not finishing his bottles every time but he hasn't left more than 10cc. He nursed so well today.

Riley had his feedings increased to 33cc. He hasn't been gaining as quickly as Addison and finally, one of the nurses asked to have his feedings increased. He has finished just about every bottle since yesterday.

They're not quite ready to have their feeding tubes out yet but we're keeping our fingers crossed that it will happen in the next few days. They're both eager to eat for every feeding.

Ian got to feed Riley his bottle today. He finished the whole thing and only spit up a little bit. It is the first time Ian has fed either of the boys.

Their nurse said that when she comes back next weekend (she used to have them almost every day when she was fulltime but recently went to working only weekends) she hopes to see them in open cribs.

I'm also going to have to do some creative carseat positioning in my van. We had planned on the big kids sitting in the back, on the bench seat and having the babies in the second row captain's seats but a carbed won't fit on the captains seat so I'll have to figure out where to put the olders but still be able to push the seats up the buckle in the babies.

We're also going to set up their co-sleeper tomorrow so that I have a little bit to get used to something being on the side of the bed.

Riley hasn't had any events since yesterday and Addison has only had a few small, self resolved events. Addison weighs 3lbs. 10.5oz. and Riley weighs 2lbs. 12.7

They're both slowly starting to get weaned off of the diurell and potassium. The only meds they should be on when they come home are the zantac and the poly-vi-sol (really, really smelly vitamins with extra iron) so they're starting to add those into the bottles to get the boys used to the taste.

More steps in the right direction

RILEY WAS TAKEN OFF OXYGEN TODAY!!!!!!!!!!!! He was at a very low flow setting, on room air, and had the tubes out of his nose more than he had them in. When his nurse came in, she went to check on them and he had his tubes pulled out but still had his oxygen saturation at 98-100%. She decided to leave them out of his nose, but not take it off, and see how he did. I called to check on him around noon and was told he was no longer on oxygen. I was hesitant to share the good news because sometimes during feedings, they dip down and need some extra oxygen. Well, not only did he not need oxygen for his 2:00 feeding, he took the entire bottle! He lost a little bit of weight from yesterday (only about 10 grams) but he did get his feeding amount increased to 29cc. He nursed like a champ tonight when Ian and I went in and his nurse only gave him 10cc through the tube once he fell asleep at the breast. The only things holding him from coming home now are taking all of his full feedings by mouth and being in an open crib, while maintaining his body temperature, for 24 hours. There won't be a carseat test for him because there's no way he'll hit 4lbs. before he comes home so he automatically will come home in a carbed. He has finally graduated to preemie size diapers! No more maxi-pad looking diapers for either of them!

Addison gained a little bit of weight. He nursed really well tonight too. After he was finished nursing, he took almost half of his normal feeding through the bottle. The boys get tired nursing but for some reason, will almost always take a bottle after they fall asleep while nursing. Ian came with me and it was the first time he's seen the boys eat. He was so proud of the boys! Ian got to hold Addison and sing him songs while I fed Riley. Addison is still on 1 litre of oxygen but hopefully he'll be turned down soon.

I had thought, up until now, that the boys would stay about the same and come home at the same time but I really think that Riley will be home before Addison.

Let's see if I can remember everything from today

I got quite a lot of info today. Over the past 2 days, the boys have been refusing their bottles of frozen/thawed milk. They nurse just fine and take fresh milk from a bottle. After talking to the lactation consultant, it sounds like an issue of the milk tasting metallic because of extra lipase in the milk. Lipase is a natural enzyme found in breastmilk that helps break down some of the fats in milk so they're more easily digestible and also helps to keep the fats well mixed. Lipase starts to break down as soon as milk is expressed and as it breaks down, it can change the taste of the milk. I guess when it's frozen and then thawed, it can be noticeably more metallic. The milk isn't bad though, it's just that the babies don't like it. So, this milk that they're having a problem with is from when the boys were a few days old and I'm hoping that it's just a small batch of milk. They had been taking frozen/thawed milk from a bottle before I brought in the older stuff. Once We bought and organized the chest freezer, I pulled the oldest stuff to the top so we could use it sooner.

So, for now, they asked me to bring only fresh milk in and see if that helps. They're both allowed to either nurse or bottle feed at every single feeding, as long as they're showing interest! Combined, they're only eating about 13 ounces per day and I'm pumping 35-40 per day so bringing in fresh is no big deal. I have to scald the remaining milk before storing it which is a mild pain in the rear but well worth the hassle.

The boys both nursed well today. They both nursed enough that their nurse only gave them half of their regular feeding. Addison took his from a bottle and Riley took his through the tube.

Addison is up to 3lbs. 9oz. and Riley now weighs 2lbs. 11.7oz.

Riley was turned down to .5 litres on his cannula. His nurse said that she doesn't think he needs oxygen at all but since they were just taken off the high flow and turned down to 1 litre yesterday, she didn't want to push for too much from the doctor. He almost never has the prongs in his nose and always has saturations in the mid to high 90's. His nurse told me that she doesn't think, for one second, that he'll go home on oxygen!

Addison has stayed on the same oxygen settings but did finally have a huge poop today and was bumped up to 36cc per feeding.

That's about all I can think of for now. I'm sure I'm forgetting something but I'm going back in at 10pm tonight so I'll recap all of their info.

More

Today was a pretty exciting day. Addison weighs 3lbs. 8oz. and Riley is 2lbs. 11oz. Addison is set to get his feeding increased from 34 to 36, after he makes a poop. He hasn't gone yet today and they didn't want to give him more food. Riley is still getting 27cc. Addison is allowed to take 1 oral feeding per shift (3 times per day) and Riley is still allowed twice per day. They want Riley to get a little bit bigger before he starts to get more oral feedings.

Both boys are off the high flow nasal cannula and on just a regular nasal cannula (same as if an adult would get oxygen). They had their flow turned down from 2 litres to 1 litre. Addison had to have his oxygen increased from 21% to 30% just while he adjusts to his lower flow settings. Riley has maintained his saturation on 21% oxygen and he almost never has the prongs in his nose. He's mastered pulling out the cannula so it's usually against his face or near his mouth and their nurse said she doesn't think that Riley will go home on oxygen.

Both boys nursed tonight. I used a nipple shield (even though I hear horrible stories about trying to wean babies off the shields) and had a brief visit from the lactation consultant and Addison nursed for more than 15 minutes. He nursed to well that his nurse only gave him half of his normal feeding through the tube.

Riley nursed for a good 10 minutes before he fell fast asleep. We did give him his full feeding through the tube.

The boys are well liked at the nicu. Every time I'm there, multiple nurses come over and tell me how cute they are, ask how they're doing, and just tell me how much they like them. I guess they're now one of the more senior residents in the nicu. Their usual evening shift nurse is Barb and she's awesome! She sits and talks with me and pays extra attention to the boys. She told me tonight that she's going to miss them when they're gone and that she's grown really attached to them. I've grown pretty close to some of the nurses there and while I'll miss them, I can't wait to not see them again ;)

9 weeks old!

The boys had another great day today. Addison is 3lbs. 6.8oz. and Riley is 2lbs. 10oz. They both finished their bottles for the nurse at 6am. They both only had a few events.

Today when I went in, Addison nursed for only 3-4 minutes and then he started to nod off so I wanted to give him his bottle so he at least got some sort of oral feeding before he fell fast asleep. He again, took his entire bottle. His nurse added 4cc extra in case he spit any out but he took all 38cc, after nursing.

Riley tried so hard to latch but his cannula kept coming lose and getting in the way. We got it tight against his face again and I tried a bigger nipple shield. He nursed for FIFTEEN minutes with the nipple shield. The nurse and I were ecstatic. He eventually fell fast asleep and we put his regular feeding through his tube.

Just a quick little story about today. After I was finished holding Addison, I had him lying on my chest while we got out Riley. I asked the nurse if she could take a picture of me holding both of them and when she gave me Riley, he was fussing and crying and he kept pulling out his cannula prongs. Addison just laid there and stared at Riley. He didn't blink or move his eyes. It was like he was completed fixated on his brother.

So, anyways, I was talking to the nurse about why the boys have kind of come to a standstill on their oxygen settings. They were quick to get them off the cpap and now they're just kind of sitting at 2 litres on the high flow. She gave me a whole big thing about how they don't want to push them, they're having apnea episodes (but only 4-5 in a 24 hour period. less than when they were weaned off the cpap), and they usually don't go lower than 2 litres on the high flow because the heat and humidity added isn't very effective when it's really low. I guess they'll go to the regular cannula and she did say there's a good possibility that would happen in the next few days.

I asked about when they'd be moved to an open bed since they've been holding their own temperatures for days. She said that they won't move them until they're 1500-1800 grams. Addison has passed 1500 but he's still being fed primarily through the feeding tube and they need to be taking oral feedings since there's nowhere to hang the syringe for the tube.

So, we've got a new set of goals to work for and hopefully, we'll start to see some progress that will result in their homecoming in a few weeks.

Great day today

Addison is 3lbs. 4oz. and Riley is 2lbs. 10oz. They're still on the same oxygen and high flow settings. They're both having minimal events and their nurse tonight said it's shocking that they haven't needed caffeine yet.
I woke up this morning with a fever and right away, knew it was mastitis. I called my midwife and she gave me a prescription for antibiotics but until those kick in, I'm feverish and my the side of my breast is causing me almost unbearable pain. I considered not going in tonight but knowing that I'm not contagious, I couldn't just sit home.
I got in a little bit early tonight and I planned on pumping before they were due for their feedings because I was afraid that it would hurt too much to try to nurse. Thank goodness the nurse talked me out of that plan. I got Addison out first and he latched on after a few minutes and nursed for a few minutes. He started to get sleepy so I sat him up to burp him so we could put his milk into his tube but he opened his eyes so I decided to take advantage of him being awake and tried his bottle. He took his entire bottle for the first time!! All 34cc of it! Not only did he finish his bottle, he didn't gag and and he coordinated the suck, swallow, breathe thing really well. Usually I have to pull the bottle out so he can catch his breath but the only time I took the bottle out of his mouth was to burp him halfway through the feeding. I'm so proud of him and his nurse was shocked and proud as well.
Riley latched on for the first time tonight. He was able to nurse for a few minutes and then we gave him his bottle. He drank 12 of his 27cc before he burped and spit up. He spit up quite a bit so I didn't push the bottle after that.
So, they both nursed and they did so well with their bottles that their nurse was planning on trying to give them their bottles for their next feeding.
I keep getting errors while trying to upload pics so I'll try again in the morning.

2 months old

We've come a long way in 2 short months. Addison is 3lbs. 4oz. and has been in room air on 2 litres on the high flow and only had one small event this morning. He didn't have much interest in the bottle for the nurses and I was unable to wake him tonight to try and nurse.

Riley is 2lbs. 8.8oz. and also in room air on 2 litres. He has not had any events. He took 16 of his 27cc this morning and he took 11cc for me tonight. He was trying to nurse and we tried using a nipple shield but that didn't seem to help much. After trying to nurse, he happily took his bottle. You could tell that he wanted to take an oral feeding.

Ian and his parents completed the infant cpr class. It's one of the required things you have to do before discharge. I'll be heading in with my mom sometime this week.

The zantac seems to be helping a lot with their reflux. Since they started, they've only been having 1 or 2 events per day. Their nurse tonight mentioned that they may try to turn down their high flow to 1 litre tomorrow.

Just another day

Weight-wise, there weren't many changes. Addison only gained 4 grams and Riley lost a few grams. They both had their feedings increased. Addison now gets 32cc and Riley gets 27.

Addison's high flow was turned down to 2 litres from 2.5 and so far, so good. They've both been consistently in 21-22% oxygen and not having more than 1-2 episodes.

Nursing didn't go as well as yesterday. Addison spent most of the time wiggling around and he tired himself out.

Riley tried with all of his might and he was able to latch on but not able to stay latched. We kept trying but after about 20 minutes, we decided to take advantage of him being wide awake and we gave him a bottle. He took half and then fell asleep.

The boys both started physical therapy a few days ago. June comes in and works with them by moving their legs, arms, and making sure their bodies stay properly aligned. She was very impressed with their hips and shoulders. Preemies commonly have alignment issues due to lying down all of the time but the nurses have been positioning them well and thus far, no problems.

Another positive day!

Addison weighed in at 3lbs. 2.6oz. today. Since starting on the Zantac, he's been having less periodic breathing and he only had once quick, self resolved event last night. He got his second bottle at 2am and took 20 of his 32cc.

Guess what he did when I went in tonight??? HE NURSED!!!!! He latched right on and nursed on and off for about 15 minutes!! I asked the doctor to write orders for me to try nursing but I wasn't expecting to try tonight. I had just pumped before going into the hospital so he didn't get much milk but he got some and he nursed like a champ!!! He looked up at me the whole time, with his eyes wide open, and it was such an awesome milestone! He didn't de-sat at all and he eventually lost interest and then took about 4cc from his bottle before getting the rest through his tube.

Riley weighed 2lbs. 8.2oz. as of this morning. He's been sitting tight in room air and like Addison, only had one self resolved event. He took 18 of his 25cc from his bottle at 2am. He wasn't as keen on nursing as Addison was. He's a good bit smaller than Addison and Riley had some trouble latching on. He did root and try so that's a good sign. He's going to need a little bit of work and a little more strength. After trying to nurse for about 15 minutes, I tried to give him his bottle and he was too tired. I held him while he got his feeding through the tube and tucked him tightly into the isolette.

Their nurse said that she's hoping to get their high flow turned down a little bit tomorrow and hopefully get Riley's feeding amount increased. I would have been 34 weeks pregnant today. Skylar was born at 32 weeks and he came home at what would have been 35 weeks and today, I was talking with one of the nurses and I mentioned that in a month, there's a really good chance they'll both be home and she said "there's a chance they'll be home in 2 weeks". It really hit me that in a few short weeks (whether it's 2 or 4, it's still short in comparison to how long they've been there) we'll be snuggling our little guys at home instead of in a rocking chair squeezed in between two isolettes.