Back from the hospital

We were there a bit longer than planned but overall, we had a great visit. No really changes with the boys since my post this morning. I got to hold Riley for his feeding since the doctor went to lunch just before it was Riley's touch time.

The meeting went well. He went over all of their nutrition and how they're growing. He's very pleased with the progress they've made. Addison hit 1,000 grams which is a huge milestone. He suspects that Riley will hit 1,000 grams within the next 2 weeks. Addison is back down to getting the xopenex twice a day. He also said that they have chronic lung disease (common with preemies who require oxygen) but at this point, their lungs have begun the healing process and there is minimal damage being done by the cpap.

Their red blood cell count is good but there's still a small chance that they may need one more transfusion in the next few weeks. Their bodies are growing at such a rapid rate that they can't make enough blood cells on their own.

We talked a little more about their eye exams from today. The opthamologist pretty much said that the exams were inconclusive. Their retinas are too immature to see any problems and he wants to do a follow up in 2 weeks. Dr. Brown did say that it should put our minds a bit at ease that he wanted to do a 2 week follow up instead of 1 week. He also did say to expect for the boys to both be diagnosed with the retinopathy of prematurity at some point but hopefully it will correct itself and there won't be a need for laser surgery.

Riley is doing amazingly well with his cpap and we were told that assuming he continues to do well, when Dr. Brown is in again on Sunday, Riley will be taken off the cpap and put on the high flow nasal cannula! Addison is still at the +5 but he's not too far from being off the cpap as well.

Around 33 weeks, and as long as they're off the cpap, we're going to start putting the babies to breast and try to slowly get them comfortable enough to try to nurse! Nursing the twins seemed like such a for away goal and it's now getting so close. I plan to be heading to the hospital more once they're starting oral feedings.

Now for the best thing we heard all night. Dr. Brown said "at our next meeting, in 4 weeks, we will likely be talking about DISCHARGE"!!! Seriously, them coming home seems like something that will never happen and to hear it being talked about as the reason for the next meeting makes me realize that they will soon be home with us. For the past 6 weeks, we've made ourselves at home in the nicu. We joke with the nurses, go visit our boys, talk to other parents, and have learned our way around the hospital fairly well. We did briefly talk about them coming home on monitors and the doctor said there's more than a 50% chance that they will come home with apnea monitors. He also said there's still a chance they'll come home with oxygen but he did say that if they come home on oxygen, he can promise that they'll be off of it by 6 weeks. I guess we'd have to come back at 3 weeks and then again at 6 weeks to have it all checked.

We now have to schedule our infant CPR classes and we're making grandparents go through it also in case they have to watch the kids for any reason.

We've made it 6 weeks so far, we can make it for another 4-6!

Late morning update

So, I called to see how the boys were doing and found out they had already had their eye exams. The opthamalogist didn't find any problems but did say they had premature retinas and that he wanted to follow up in 2 weeks. That is almost always what he says when he sees little babies so we were expecting it. The nurses said that both boys tolerated the eye exams relatively well.
Addison was turned down to a +5 on his cpap and had 2 episodes last night but none yet today. He now weighs 2lbs. 4oz. and his feedings have been increased to 25cc (5cc away from one ounce!). He's been staying in 25-30% oxygen.
Riley is up to 1lb. 13oz. and is getting 20cc per feeding. He is still on the +4 cpap and has been doing really well on that for 2 days. He had one episode last night and 2 so far today.
They both re having their potassium supplement increased only because of them gaining weight. Their levels are still within normal but they were on the low side of normal. All of their other vitamins and supplements are the same.
I should have a fairly big update tonight. Their primary doctor wants to have a meeting with us this evening. Tomorrow, I would have been 32 weeks pregnant so it's time for another "what they've done and what should happen over the next few weeks" meeting.

Just got home from the hospital

What a wonderful visit tonight. No changes with the oxygen, cpap, or feedings for either of the boys. They had a stable day with only a few minor apnea/brady episodes.

I got there just in time to Kangaroo Care Addison for his feeding. He seems to have trouble adjusting to being held and it takes him 5-10 minutes to settle. Once he was settled, I talked to him until he drifted off to sleep with a full belly. He slept soundly and didn't have any problems. He was sating high again after being put back into his isolette.

Then it was Riley's turn to be held. We got him out and he didn't cry, de-sat, or do much of anything. He looked at me while I talked to him and held the syringe of breastmilk. I talked to him until he fell asleep and once he was asleep, it was probably the most peaceful time I've had with either of them. He didn't move, he didn't cry, he didn't de-sat, and we were so cozy that I nodded off for about 15 minutes. Their nurse came back from dinner and I had to pump so we put Riley back in the isolette. I looked at the clock and it was 7:30. I thought for sure it was later than that. The time that I spent with them tonight was probably the best so far. They respond so well to the kangaroo care.

6 weeks old!

I got to Kangaroo Care my boys for the first time today and they both LOVED it! Addison was at 30% oxygen when I started to hold him and shortly after being put back into the isolette, he was down to 23% oxygen and still sating 98-100. He slept the whole time he was in my arms. Riley was very receptive to being held. He opened his eyes every time I talked to him and he looked like he had a million little thoughts running through his head.

They didn't have any apnea or brady (slowing of the heart rate) episodes today. Riley had his feedings increased to 19cc. Riley is down to a +4 on the cpap. The next step down will most likely be a high flow nasal cannula. A high flow still heats and humidifies the oxygen whereas the regular cannula is just straight oxygen. Addison is still at the +6.

They have their eye exams scheduled for the 31st. We were told to expect the opthamalogist to say they had premature retinas and to follow up in a week and then to expect a few more follow ups. I hope they don't discover anything urgent or serious.

Today my moms neighbor gifted the boys with blankets that were donated through Project Linus. It's a charity that makes and distributes blanket to traumatized or seriously ill children. If you're able to sew or crochet blankets, you should check out their link over in the column on the right. Their blankets are beautiful and are too big to be in the isolette so they've become their isolette covers for now.

Sorry for the late update today

I'm finally home and settled from seeing the boys this evening. Ian went back to his regular schedule at work today. He had changed his schedule when they were born because they were so critical and he wanted to make sure he was there daily with them. Now that they're much more stable, he can work his regular hours and get some much needed rest.

The boys had another stable day. They're both still on the same cpap settings with their oxygen staying the same as yesterday. Addison had 3 apnea episodes between last night and this morning but he didn't have anymore the rest of the day. Riley has only had one episode.

Addison now weighs 2lbs. 1.8oz. and 14 inches long. He has had his feedings increased to 21cc. Riley is up to 1lb. 11.7oz. and is 13.6 inches long. He's still only getting 17cc. They both started to get something called Benepro mixed in with their milk, twice per day. It's just extra protein. So they're getting that, in addition to the folate, vitamin E, potassium, and general vitamins with extra iron. Oh, and the 26 calorie fortifier and Diruel. They get their little breastmilk cocktails every 4 hours and seem to be tolerating everything well.

I got to hold both of them tonight. I held each of them for a little over a half hour. Addison was having issues with his cpap prongs coming out of his nose so we put him back into the isolette and let the respiratory therapist change to a smaller set of prongs while I held Riley. They both cried and squeaked while I was holding them. I feel so bad for being happy to hear them cry. When you don't hear your babies make any noise for almost 6 weeks, you're happy to hear anything. From the little squeaks when they hiccup to the big squeaks when they cry.

I just got off the phone with their nurse and was told all is well, Addison is doing much better with the smaller cpap prongs, and they're both sound asleep.

Moving day

Today Addison finally got moved to be next to Riley. While I was holding Riley, I noticed the bed next to him was finally empty so I asked the nurse if they were still planning on moving Addison. Within a half hour, they had become neighbors.

They're both still doing well on the cpap and they both had the pressure turned down. Riley is now down to a +5 and Addison is at a +6. Riley is getting 21-25% oxygen and Addison has been able to get all the way down to 28-30% (they weren't able to get him under 55% the first day he was on cpap) The respiratory therapist told Ian that if Riley keeps going down 1 per day, he'll be on the nasal cannula by the end of the week! He also really loves his pacifier. He's able to keep it in his mouth and creat a seal even with the feeding tube.

I got to hold Riley this morning and Addison this evening. They have been responding so well when we hold them.

I took 2 more outfits for each of the boys and a blanket for each of them that we slept with last night so it would have our scent.

Proud Papa!!

Today Ian held Riley for the first time! They both did really well and Riley loved being in his Daddy's arms :)

Riley is doing amazingly well on cpap. He has been sating in the upper 90's for the past few days. When I went back in at 2pm today, his nurse told me that they turned down his cpap one level. So, he's now down to 6 and holding his own. He started to get his vitamins, folate, and vitamin E mixed into his feedings and he seems to tolerate it just fine. We got to hear him cry for the first time since he was born. When they're on the vent, they're not able to make noises. It's kind of bittersweet. You're happy to finally hear your baby because you know they're healthy enough to be able to cry, but you hate to see your baby upset.

Addison loves being held too! Last night, he was freaking me out a little bit while I was holding him so I didn't hold him very long. He kept de-sating and even though the nurse said he wasn't de-sating enough to go back in the isolette, I didn't want to stress him out and have him get put back on the vent. Today he did much better! Yesterday they weren't able to get him under 55% oxygen but today he was down to 47% and sating well. While I was holding him, he was actually setting off the alarms for sating too high.

Both of the boys love their pacifiers. They may be our first kids to actually use them.

Tomorrow we're going to start doing kangaroo care (skin to skin contact) and I'm so excited! Kangaroo care has been proven to be extremely helpful to little babies overall progress. I'm convinced that their transition to cpap has been made easier because we're able to hold them daily.

Got the whole story today

Ian got stuck in horrible traffic on his way home from work today. It took him almost 2 hours to get home when it should have only taken 30 minutes. We didn't go in for our 2pm time but I did get to go in for their 6pm touch time. As I was talking to Addison's nurse, I asked what had been the deciding factor to extubate him. Apparently, he threw up a little of his feed and a little bit somehow got into his vent tube. They were going to have to change that vent tube but wanted to give him a chance on the cpap. So far, so good. His blood gas was excellent. So excellent that his nurse took the little paper read out to show all of the other nurses. He's getting about 55% oxygen but he doesn't need any caffeine or the steroid/anti-inflammatory that Riley was getting.

He's been sating well and breathing plenty on his own. He's still getting the xopenex 4 times per day but they're giving it into the mouth by a mini inhaler style dispenser. He's been tolerating the 26cal. fortifier and is still getting 20cc per feeding. I got to hold him for almost a half hour tonight. He kept de-sating (only by a little bit) and although his nurse said he didn't have to go back into the isolette, I didn't want to stress him out too much on his first day of cpap.

Riley hasn't had the steroid/anti-inflammatory in a few days. The doctors said it takes about 3-4 days to get out of their system so they're hoping that there isn't too much swelling once it's all out of his system. He's been in room air (21% oxygen) most of the day and was only up to 25% when I was in there tonight. He's also tolerating the 26cal fortifier and hopefully it helps him gain some weight.

Both of our boys are off the ventilators! After almost 6 weeks, we've hit a major milestone. Keep you fingers crossed that Addison doesn't get tired and have to go back on the vent.

Addison has been extubated!!!

And it wasn't because he pulled out his tube! I called this morning to see if they were tolerating their new 26 calorie fortifier (which they both are!) and while I was on hold for the nurse to pick up, the doctor picked up. My heart sank because I thought something was wrong and instead he tells me that he decided to extubate Addison and put him on cpap!!! He said he's doing wonderfully and his blood gas was excellent.
That was the perfect start to my day!

Got to hold Riley again today

A few changes have been made today. I guess the first big change is that both boys are now going up to 26 calorie fortifier. Addison is gaining but they'd like to see him gaining a little bit more. Riley seems to have lost a little bit of weight. They said it could be 2 reasons. First, if he was last weighed when he had his IV in, they put a board on his arm and since that is no longer there, he could have only gained enough weight to make up for the loss of the board. The more likely explanation is that now that he's on the cpap, he's using more calories to breathe on his own. He weighed 1lb. 10oz., so it's not a huge loss, but he shouldn't be losing anything so they upped his calories.

Addison is still on the vent and his breaths per minute have been reduced to 43. So far, so good. He's getting bloodwork done once per day unless there's a reason do to it more. His blood gas looked good this morning and he hasn't had any major problems so we'll see how he handled the reduced bpm when they do lab work tomorrow. He's still getting the xopenex 4 times per day and he's still wheezy. We asked the doctor today if he were to pull out his tube, if they would try the cpap and the doctor said they absolutely would put him on cpap. He also added that he thinks the cpap isn't too far away for him anyways! The nurses give the boys these tiny little pacifiers when they get their feeds and Addison's nurse said that today, for the first time, he actually took it and sucked on it. As much as I hate pacifiers, I'm happy that they're trying to get the boys to learn to suck and swallow. They should be ready to try to nurse around what would have been 34 weeks gestation (3 weeks from now) so hopefully, this will help them.

I went back after dinner to visit and I was able to hold Riley for just under an hour. His oxygen saturation was 97-99 (the range they should be in is 84-96) and he had to have his oxygen turned down to 24% while being held. That made me feel good to know that he was so comfy. Near the end of his holding time, he got so comfy that he had a small apnea episode and that's when we decided that he had probably had enough of being held.

night time ramblings

I had to run out to Old Navy to return some stuff and pick up a few more things for Skylar's back to school clothes. I missed spending time with the boys so I decided that on my way home, I'd take a detour and stop by the hospital for a few hours.

I got there and finally met some of the evening shift nurses. I didn't realize that the boys had evening touch times ( 6 and 10pm) until I asked if I could hold Addison. The nurse asked Dr. Hoffman (who's awesome) and he said it was no problem and that he was going to write in both of the boys charts that they can be held once daily. The nurse figured if she was going to get him out, she would weigh him and change his isolette early. I got all set up in the chair, she put him on the scale, and then into my arms. First off, he weighs TWO POUNDS!!! He hit 2lbs. I never, in a million years thought I would be excited that my baby finally weighed 2lbs. I got to hold my boy for 45 minutes. The respiratory therapist and the nurse were happy to see that he was sating better than he had been all night. After 45 minutes, he started to get restless and he started desating so we decided to put him back in the isolette for the night. Addison was awake for about 30 minutes while I was holding him. He has beautiful blue eyes that I was able to see for the first time. I couldn't take my eyes off of him. He's so tiny and so perfect. When she weighed him, she put on his cute little dinosaur shirt that we bought a few weeks ago.

Riley is still on cpap and it was down to 26% oxygen. Everyone is shocked at how well he's doing. I didn't hold him tonight but I told his nurse that I was hoping to get in there in the evening for one of his touch times to be able to hold him.

I feel calm and complete when I'm able to spend so much time with them. Tonight was fantastic and I think I might be making more evening trips over to see them.

Not too much to say

Riley is still rockin the cpap! He was down to 27% oxygen and sating in the 90's when we were in today! His blood gases have been perfect and he still is not having any apnea episodes. His nurse from Monday had off yesterday and she said when she came in today, she was shocked and thrilled to see him not only still on the cpap, but to be doing so well with it! He's not having as many desats since he's been on the cpap. He must have known he was ready when he pulled out his tube. His IV got taken out this morning so now his arms and legs are free to move around. He was finally wearing clothes when we went in today. His nurse said she noticed Addison was dressed and she felt bad that Riley didn't have any clothes on so she dressed him :)

Addison is still on the vent. The respiratory therapist was going to try to turn him back down to 48bpm and hope that he keeps his blood gases low. He's still taking his feedings like a champ. Not much has been changing with him lately. When we went in today, I got confused for a second because Addison was wearing the shirt we got for Riley. He looked just as adorable in it as Riley did.

Overall, we are thrilled with their progress so far. They are growing and doing everything that they should be and more.

5 weeks old!

Addison had to be turned back up on the ventilator. He had a blood gas come back with co2 level of 86. The nurse said they like it to be in the 40's. So he went from 48bpm to 52. Two more than yesterday when they turned him down. The good news is that his blood gas was perfect in the afternoon. He's been behaving wonderfully and tolerating his feedings. He really likes to keep his little hands wrapped around the vent tube. I'm sure it won't be long before it gets pulled out again. He is now getting xopenex (like albuterol but without the nasty side effects) every 6 hours instead of every 12. He seems to desat and once he gets his breathing treatment, does much better. His lungs are still "wet" and he's kind of raspy so they have to suction him every so often.

Riley is staying strong on the cpap. His blood gases are coming back low, he's not having any apnea episodes, and he's content as can be. The respiratory therapist explained that there's certain levels of cpap. Right now, Riley is on a 7. It has to do with how much oxygen is being pushed through the tubes. Once they get down to 4, they will try to nasal cannula as long as everything else is going well. That's not for a while but it is kind of nice to have mini goals for him. He was wide awake today when we were in. He was just lying there, looking all around, and loving the attention. He got his last round of antibiotics late last night but they are keeping the iv in for now, just in case. They said they had a hard time finding a place to put the iv and they wanted to leave it in just to be safe.

Just as a size comparison, if you look at Riley's picture, take notice of the safety pins. They're regular, standard size safety pins. Also, the tube that goes across his face and connect the

blue and white tubes is only 3 inches long. They've both got a lot of growing to do but they're already noticeably bigger than when they were born.

oh what a night!

So, last night Ian had gone to bed early to try and rest up from a very long weekend. I had to stay up so I could pump before bed and only have to wake up once in the night to pump again. So, at about 11pm, I was pumping and watching tv and I hear a voice talking on the answering machine. I never heard the phone ring because Ian had taken both house phones upstairs. I assumed it was Ian calling down to see if I was coming to bed anytime soon so I tried to call his cell phone and when he didn't answer, I knew he was still sleeping and I got worried. Nobody ever calls our house that late. I stopped pumping and listened to the message. It went something like "Hi, this is Dr. Hoffman. I wanted to catch you before you went to bed. If you get this message, call me back. Nothing urgent." So, I'm thinking, if it's nothing urgent, why in the world are you calling at 11pm. I panicked and called him back. He said he wanted to call with a bit of good news since so often the nicu calls with bad news. Riley had pulled out his ventilator tube and they put him on cpap! He was also in the middle of the second part of his blood transfusion. So, while it may initially sound like great news, it had us worrying for a good part of the night. He's still small and was still on relatively high vent settings and he recently had an infection which he's still receiving antibiotics for. The nurses have told us many times that re-intubating babies is somewhat traumatic and can result in setbacks for days. He had been doing so well that the last thing we wanted was another setback. His vocal cords and throat were swollen from the vent tube so they were going to also give him an anti-inflammatory with a steroid to help with the swelling.

This morning, we were excited to get in and see how our little guys were doing. We got wonderful updates.

Addison is up to 1lb. 14.6oz. He's so close to 2 pounds! He is up to 20cc (3/4oz.) of 24cal. breastmilk and tolerating it really well. He's again, staying steady on his vent settings. They're starting to try to bring him down 2 breaths per minute every day to prep him for the cpap.

Riley was in the middle of his transfusion and his IV blew. They had to start a new one in his arm and even though he was on the cpap, he didn't have too many problems. He gets his last dose of antibiotics at 11pm tonight and then he should be IV free.

As of 8pm tonight, he hasn't had any apnea episodes and his oxygen is staying in the upper 30's to low 40's. The nurse explained that it's very common for the oxygen level to go up when they switch from a vent to the cpap because they're not getting pressurized breaths on the cpap. He's been tolerating his 24cal. feedings and pooping on his own. His belly is not distended at all.

Riley wasn't weighed today because of his ordeal overnight. They may weigh him tomorrow but they'll more than likely just wait until Thursday (weight days are monday and thursday).

I think that's about it for today. It's been a long and exhausting night and day and I'm looking forward to going to bed in a few hours.

Another great day!

Today I called the NICU before we went in to ask if I would be able to hold Addison. They said as long as they weren't busy, it shouldn't be a problem. We called the neighbor who agreed to take the kids for longer than we had planned so that we could spend extra time with the boys.

Once we got in there, I tried to turn on the camera to take a picture of Riley. The camera wouldn't turn on. We had charged the batteries last night but for some reason, 2 of them didn't charge. I had to take a half hour trip through the hospital, to 2 different gift shops, to buy the last pack of batteries in the whole darn hospital.

When I returned, Ian told me that Addison had started acting up and they weren't sure if he would be able to be held now. At that point, I was on the verge of tears.

We scrubbed our hands and went back in and thank goodness, Addison had calmed down. They pulled up the chair, wrapped him up, and put him in my arms! I held him tight for almost an hour. I've finally held both of my boys and I feel much more connected to them.

Riley was having some issues while we were there. Earlier this morning, he pulled out his feeding tube and got so worked up that he ended up throwing up his last feeding. His belly looked distended so the doctor ordered x-rays. They came back perfectly normal. Riley got some glycerin, made a huge poop, and his belly looked a little bit better. His IV also blew this morning and they were able to get one in his leg. He's getting another blood transfusion (number 4 for him) today and tomorrow will be his last day of antibiotics. After that, he will be IV free! The rest of his feedings were uneventful and he kept them down no problem.

Addison had a pretty easy day except when he acted up while we were there.

They're both staying in 25-30% oxygen and breathing above the vent.

I'm hoping that I'll be able to hold them on the weekends while they're still on the vents. Once they're established on cpap, I'll hold them more often but I don't want to rustle them around too much when they're still so dependant on the ventilator.

Fantastic visit today!!!!

Look at what I was allowed to do!!!!!!!!

When I was in yesterday, Riley's nurse mentioned that if he had a good night and they weren't busy tomorrow, that I would probably be able to hold Riley when I came in. I tried to not get my hopes up because there has been talk about holding him before and for various reasons, was not able to hold him. We went in for our 2pm visit and shortly after, they had him wrapped up and IN MY ARMS!!!! It was awesome and amazing and I could have sat there all night with him held tightly against me. He only de-sated when I started rocking (I was in a nice comfy rocking chair).

Riley is up to 17cc of breastmilk and he's tolerating the 24cal fortifier. He had a nice stable night and day.

Addison is still doing well. I didn't hold him today. I think I would have been allowed to if I had asked but I was holding Riley for so long that there wasn't time. We had to pick up the older kids from my dad's house by 4. He's still on 18cc of fortified milk. They restarted his potassium because his levels started to get low again. He loves being on his belly. They tuck his little arms and legs under him and he does really well.

So, another steady day, they're both healthy, and after 33 days, I finally got to hold one of my miracle boys!

Stable day

Not much to write today. Addison is doing well. He's up to 18cc of fortified breastmilk. They stopped his potassium because his levels were high.

Yesterday, when Riley's nurse told us he had been weighed, she was wrong. I'm not sure if she read the wrong chart or what but he was weighed today and weighs 1lb. 10oz. His feedings have not been increased because they started him on the 24 calorie fortifier and want to have him on that for a few days before they change anything else.

They are planning to move Addison's isolette over to be next to Riley. They finally have an opening next to Riley and hopefully they won't get any babies overnight so that they can put the boys next to each other. It would be nice to not have to walk back and forth across the nicu to see each of them.

Growing bigger and stronger

The boys are both holding steady on their maximum feeds. They're both staying close to the same vent settings.
The big news for the day is how much weight they've gained.
Addison now weighs 1lb. 12.7oz and Riley weighs 1lb. 13oz.!!! How freaking cool is that? If they keep growing like this, they may hit 2 pounds by Monday! Addison has a cute little bald spot, probably caused by lying on his side.
Everyone is happy with their progress and the doctor talked with us a little bit about what's been going on and a little bit of what their future plans on. If Addison extubates himself again, they may consider trying him on the cpap again. He hasn't been riding the vent and he's been on room air almost all of the time for a few days.
Both of the boys were wide awake when we were in today and I got some half decent pictures but most of Addison's pictures ended up kind of grainy.

Not much happening

We've kind of reached a point with the boys where they're stable. They're eating, on steady vent settings, and overall content. Time is starting to slow down while we wait for the boys to grow.

Addison is still doing well on the 24cal. feedings. He's staying at 21-25%oxygen and breathing above the vent. He's currently getting 50bpm. Addison stopped getting the potassium because his levels were actually high

Riley is up to 15cc of 22cal. fortified breastmilk. At 2:30am, he'll go up to his limit of 16cc. His last day of antibiotics is the 21st and then he'll lose his IV. Riley is down to 38bpm and is around 35% oxygen.

Both of their head ultrasounds were normal. They will probably get a final u/s just before they come home but as the nurse practitioner said "there's a slim to none chance of there being anything abnormal".

They're now getting bloodwork done every other day instead of daily.

We may be to the point that we don't have daily blog updates.

4 weeks old!

So, when the twins were born, we were told by the doctor that our babies only had a 50% chance of survival and we were given a long list of things that can go wrong. Here we are, 4 weeks later, with a much more positive outlook.

Addison continues to tolerate his 16cc, 24 calorie fortified feedings. His settings on the ventilator have been down and they're hoping to start weaning him off of the vent. His blood transfusion (3rd one so far) went perfectly and the doctor is hoping that gives his body the boost it needs to get off the vent. He had his 3rd and hopefully final head ultrasound today which came back as "unchanged". Brain bleeds are no longer a concern. He seems to like to pull out his ventilator tube. He had pulled it out just before I went to see them today. I keep joking with the nurses that he's trying to tell them he's ready for the cpap.

Riley is quickly catching up to his brother. He is now getting 12cc of 22 calorie fortified breastmilk and tolerating it!! He has about a week and a half of antibiotics left. They stopped giving him the TPN (total parental nutrition, basically liquid food that goes through the iv), lipids, and one of his antibiotics. The IV will now only get a dose of antibiotic twice per day. They're still hoping to try to get a PICC line in but with not having constant flow into the IV, there's less of a chance of it needing to be changed. He's been going to the bathroom on his own. He seems to go once the nurses start talking about giving him glycerin. Riley also had a head ultrasound done today that came back as "unchanged". His vent settings were a little higher than they had been but he apparently got messed with a lot and he does not like being bothered at all!

I can't believe that it's been 4 weeks already. They're our little miracle babies who continue to fight every day.

Phone calls from the NICU

Every time the phone rings, and I see Reading Hospital show up on caller ID, I get this bad feeling. When the babies were born, we were told that the NICU would call if there was a problem. We received a call when Riley had the infection and we've got a few calls from the doctors, just to give us updates. I sometimes debate whether I should answer or not because I'm so afraid of a getting a bad call.
This morning, the phone rang and I saw the hospital on the caller ID. I reluctantly answered and it was one of the head nurses. She was calling to let me know that they were going to be giving Addison a blood transfusion. At first I was confused because he hasn't had IV's in over a week and has been doing really well. She then explained that they think he's ready to start being weaned off of the ventilator but that his blood doesn't have enough oxygen carrying cells so they are hoping that a small blood transfusion will give him what he needs to get off the ventilator!!!
He's also tolerating the 24 calorie fortifier. His first feeding with the 24cal. was at 6pm last night so he's had multiple feedings and not giving anything back!
She also let me know that she's going to try for a PICC line today or tomorrow for Riley. The antibiotics seem to be really hard on his veins and his IV is needing to be moved daily. He's still got another week and a half on antibiotics.
I can't wait to get in there and see them today.

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.