And A Happy New Year

Welcome 2016! I am hoping for great things this year! I could go on and on about goals and reflections but I will keep it short ;)


2016 we will face some big challenges and changes, but I am hoping to keep a positive spin on things around here! I am excited to celebrate Benjamin turning 3 soon, Eloise will be 1 before we know it, and the twins will be off to Kindergarten! I don't even want to talk about it.

I have taken on some new projects over the past few months and I'm hoping to grow those projects and push myself out of my comfort zone. I'm hoping it will all work out but we shall see ;) I'm a little nervous to invest in some things but i know all you wonderful people will support me.

I know this, because you guys really all pulled through to make the end of 2015 super awesome! I didn't post about this much on my blog but thanks to friends and family near and far we put together some pretty awesome NICU baskets! We put together 15 gift baskets for families at the NICU the twins were born at including baby toys, clothes, gift cards, snacks, hygiene items and a keepsake book to deliver right before Christmas. We also got a cookie tray and a ton of drinks from local businesses, so big thanks to Ritchey's Dairy and Mamie's Cafe and Bakery in Martinsburg, PA! I used to scoop ice cream at Ritchey's so it was awesome to have them help us out with this! We made the kids walk and it took our triple stroller to lug everything up to the NICU. While we couldn't deliver everything personally to the families, I am sure we made a lot of people really happy with our gift baskets and it wouldn't have been able to happen without everyones donations so really, I couldn't thank you enough!

Overall, 2015 was pretty awesome, despite some little bumps in the road. 2016 has some bumps in it too but I'm hoping and praying for some big things this year for me and for all of you!

So Happy New Year and if you get a minute, say a prayer for our family as we go through our little bumps this year.

Parents of Preemies-3 years later

"We saw something on your son's head ultrasound..."

I remember hearing those words almost 3 years ago. We had been in the NICU for a few weeks. Jackson still wasn't keeping his oxygen up without the help of CPAP. For the first time since the twins were born, I cried, not because of what was happening right in that moment, but because I realized that this preemie journey wouldn't be over soon. It wouldn't be over the day we left the NICU. It wouldn't magically disappear when they "grew out of it" at 2. It was going to be something we were going to have to deal with for a very, very long time, if not for the rest of their lives.

The bleed in his brain was very mild, so mild they had missed it during an earlier ultrasound, but it was still there, threatening his development and leaving us with a wide array of unknowns. Would it cause cerebral palsy? Would it cause other development delays? Would he ever be able to come home? I had never questioned if the twins would be coming home. They were strong, they were fighters, they were doing better than anyone expected, but now...were they going to come home was a serious question I couldn't quite shake.

That day sticks out in my mind more than any other day the twins were in the NICU. I remember crying and holding Jackson. I remember the nurse letting me hold him for a few minutes longer, even though his temperature was dropping, because I wasn't quite ready to let him go yet. She brought over a warmer blanket, dimmed the lights, and let me just lay there with Jackson, my tears dripping down on his arm he had wiggled under my chin.

 3 years later, we do have some answers. We know his bleed really was mild, we were very lucky, but I don't think it's made this preemie journey any easier. We followed up with several specialists and spent a few months making sure his low muscle tone wasn't anything more serious. His developmental delays are pretty obvious, and we go to therapy 3 days a week to work on things. He has made tremendous progress and I am so grateful for that. I know these challenges presented to him have not only showed me what a resilient kid he is, but what amazing things he will be able to accomplish as he grows.

And now that he is almost 3, we have a new set of challenges. Jack is going to have to go off to school soon and have to communicate with teachers and classmates. I'm worried he won't be able to do well in school because he can't understand and they can't understand him. I'm worried he won't be able to make friends because he can't keep up with his classmates. I'm worried I'm going to have to fight every day to make sure he gets all the help he needs to excel, because so many people in the world think he should just "grow out" of his prematurity.

 But prematurity really doesn't go away when you leave the NICU. It is a long, hard road for these kids, and their parents. It's driving all over town to different doctors, then spending hours sitting in waiting rooms, hours at therapy, holding your child while the doctors poke at him yet again, or watching your child try to keep up with kids his own age at the playground. 3 years later, prematurity is still a daily part of our lives.

Whether you're a brand new parent of a preemie or a preemie parent for 25 years, I think this road we have been on is something that we can all relate to. It is a hard path for all of us, regardless of the specific outcomes with our preemies, and one that leaves us crying over our babies far too many times. But that resilience you've seen in your little preemies is in you too, you just might not always realize it, or want to take the credit for it. Preemie kids have to overcome a lot, and so do all of their parents. That is why Parents of Preemies day is there, to celebrate, not just your preemies, but you too for all that you've done, the fights you've fought, and the tremendous spirit you've shown through it all. Parents of Preemies Day is on Sunday and remember, that day especially, to take a minute to give yourself a nice pat on the back (or a nice massage?). Not everyone may understand the struggles you've been through as a preemie parent, but there's a big group of us out there that do, and we want to celebrate with you!

You can find Parents of Preemies Day on Facebook and Twitter to connect with other parents!

This preemie journey for the past 3 years has been a rocky road. That little baby that was barely able to breathe on his own can now run circles around me. It is a hard and rewarding experience, but I am so proud to be a preemie mom.

Projects Lately

We've been busy lately...

Mini-mink blankets for NICU holiday baskets .

 Trying to finish Amelia's Christmas dress.

 and my favorite: Decking the halls! :)

What are your projects lately? Share your favorites in the comments! :)

From NICU to Now

 

What a difference 28 months can make ;)

 

Jackson

 

 Amelia

 

 

NICU Visit!

I am so terrible I can't believe I didn't get pictures while we were at the NICU! How silly can you get! But I did get pictures while we were prepping for our NICU visit!

We went the week before Easter so we thought we'd make some Easter cookies and cards for the lovely people at the Conemaugh Memorial RICN.

This was the first year the twins could participate in our visit although they still have no clue what was going on.

We spent the morning cutting out cookies and decorating them with sprinkles.

Although I think they much preferred eating the cookies than decorating them.

They still did a great job and most of the cookies survived the process ;)

We decorated cards the next day and put in their Easter picture with the Easter bunny to share with everyone. This was the first picture they sent that included their new baby brother too ;)

I don't think everyone on the blog has gotten to see how entertaining this picture turned out yet...

I'm holding Amelia's back to keep her in the picture, Jack looks terrified and Ben has no interest at all in what's going on. haha oh the memories ;)

I wish we had pictures visiting with the nurses and Dr. Chan but the twins were running around, I was talking to another mom who just had twins at 27 weeks as well, and we had way more fun chatting to think of taking pictures. Next time! I'm hoping we get to visit one more time before we go, maybe with Tom when he gets back. Until next time ;)

Check...Check...Check...

Eating like champs-Check!

Gaining weight-Check!

Cold stress-Check!

Car Seat Test-Check!

Do I hear the word discharge in our future??

Come on babies! Keep up the good work for a few more days! Mommy wants you HOME!

Week 7

Where has the time gone? Seriously.

This week was actually one of the hardest. Not because of medical issues and problems, but because I'm so anxious for next week! I'm hoping my week 8 report will mention the word discharge associated with an actual day. Fingers crossed!

This week was good though, other than my crazy excitement for the next week or 2.

The big event was the twins leaving the hospital for the first time! They had to go to an eye appointment, about an hour away. They traveled by ambulance, and did wonderful. I met them at the office and got to hold them and take care of them during the appointment. There was a nurse there, just in case, but she mostly just hung out on the side while I took care of the kids. I loved it, in a weird new mom way.

Not many patients show up to the eye doctor like this so we got a lot of looks. The nurses all came over to see the babies. I loved that too, in a new mm kind of way. I haven't gotten to show off my babies so I loved everyone telling me how cute and sweet they are.

The purpose of the appointment was to look for retinopathy of prematurity (ROP). The nurse dilated their eyes before they left the hospital, then the doctor shined a light in their eyes to look at their retina and see how it's developing. Jack's eyes seem to be doing quite well, which is great since he was on oxygen longer than Amelia. But my poor Mia has between Stage 1 and Stage 2 retinopathy. We go back in 3 weeks. The doctor said 90% of the time, stage 1 and 2 correct themselves as the baby develops. If it doesn't or gets worse, she'll need laser treatment to fix her retinas. I'm hoping they're improving at our next visit, but if not, at least there is a treatment and her case isn't severe enough to lead to blindness. So that's where we stand on the eyes.

Week 7 feeding update: all men who are uncomfortable with breast feeding, this is another paragraph or 2 you want to skip.

We have to get serious with feeding them and have real expectations for them, because they can't go home with an NG tube. So this week, we're giving them bottles. Apparently preemies don't have nipple confusion. So far, they enjoy going to breast but just don't have the strength to really hang on to the nipple. They take a suck of 2 then it pops out. Their latching skills are non existent. Which is fine, and pretty standard. So when I'm there, I will breast feed them for about 10 minutes, then switch over to bottle. They take the bottle fairly well when they want to. The nurses give them the bottles when I'm not there so they get around the clock practice at eating, sucking, swallowing, and breathing. They only have to put a feeding or 2 a day down their NG tubes. So they're getting there. This will definitely be the biggest challenge they need to overcome though before they can go home.

Other random updates: Jack weighs 3lbs 14oz and Mia weighs 4lbs 4oz. They've grown so much, nurses who don't work full time hardly recognize them! 

Mia is off of any drugs, supplements, everything except vitamins. She's breathing great, so as soon as she starts to eat well, she'll be ready for home.

Jack still takes a few things, they're going to try to get him off of as many as possible before they send him home, but none of it is something that I can't give him, so none of it should delay him from coming home.

This next week we'll just keep up with the feeding, then start to move on to cold stressing, car seat testing, and finally, get ready for discharge! It's exciting to see the end in sight. They'll have a few more big tests, like a repeat of the head ultrasound to see where Jack's IVH stands. Not really looking forward to that. But hopefully things look better. We shall see. I'm just hoping and praying they continue to grow and stay healthy so I can have my babies home with me soon!

Despite everything, it's been the best 7 weeks of my life, thanks to these 2 cuties :)

34

34 is my favorite number you know. It was my number in basketball when I was growing up. 34 has a whole new meaning now...34 is 1 week away from the earliest the twins can be discharged from the hospital!

Now it's a long shot they'll get discharged at 35 weeks to the day, but they'll probably be home by the time they turn 36 weeks, or so is the rumor around the NICU. We can't say for sure, I probably won't know until a day or 2 before when the exact discharge will be, but just the fact that as soon as they're healthy, they can leave makes me happy. No more waiting for that August 2nd date I've had in my head since they were born. It used to seem so far away and now it's just 1 week! I can't wait.

For right now, the twins are both breast and bottle fed. They won't be able to master breast feeding until closer to term so I breastfeed them and then we bottle feed them their real feeding. They can't go home with NG tubes so it's important that they can eat somehow, and gain weight doing it. So far, so good. Jack is a champion eater. Mia is watching her figure...or trying to win an award for most stubborn baby in the world. Either way, she takes a little convincing that eating is a good thing before she'll eat. But she's getting there ;)

Later this week (or probably more like this weekend, to early next week) they'll cold stress them and get them out of the incubators. I think they'll be fine because I have them out a lot to feed them, hold them, kangaroo them, and they're temps stay up. But they need to keep their temps in a healthy range for a few days and still eat for them to pass their cold stressing. Apparently a lot of babies stop eating during cold stress because they're not used to being cold. We'll see how they do.

A day or 2 before discharge, they'll car seat test them and make sure they can keep their oxygen saturation up while in a car seat for over an hour. We'll see how that goes. I'm not really sure how they'll handle that one.

They also spend a night with me, an no monitors, in the back in a little hotelish like room. This is more for me, to make sure I can take care of them on my own and if anything comes up, the nurses are there to help. We'll see how I do ;) I'm not too worried about it though since I spend all day, every day taking care of them myself.

The nurses are really just helping with a few things. Mostly, I take care of the babies during the day when I'm there and we've all been doing great. I feed them, burp them, change them, bath them, rock them, cuddle with them, put them to bed, and everything I would be doing with them if they weren't in the hospital. I'm excited to get them home and see how things go when they're not at the hospital...and I can't call a nurse if I get stuck with something. :)

I'll keep ya posted on things. By this time next week I should have a pretty good idea of how soon they'll be coming home. I'm hoping sooner rather than later :)

Week 6

I can't believe it's been 6 weeks since my babies were born! It seems like just yesterday. But the monotony of our lives doesn't help I'm sure. We've gotten into quite the rhythm. At least I know the twins will be on a great schedule when they get home! Although I think they're going to want a lot of cuddle time and I don't know if I'll be able to give one of them the full 1-2 hours I give them now of undivided attention when I don't have the nurses helping out with the other one.

Here's the update up until last Thursday. Sorry I'm so late. Anyway, this week...not a lot has changed, except with Jackson's breathing.


Jackson started the week on CPAP and ended the week on NOTHING! No CPAP, no oxygen, NOTHING. I'm so proud :) The doctor decided to start him on steroids last weekend. They help with the inflammation in his lungs from the respiratory distress he had the last time he was weened off of the CPAP. When the inflammation went down from the steroids, the diuretic he's been on for about 2 weeks kicked out all the extra fluid and he started breathing great! The bad part of steroids is that he dropped almost 3oz. He dropped down to about 3lb 5oz at the end of the week. He'll hopefully gain it back quickly. He also gets incredibly hungry and gets very fussy, which probably has accounted for some of the weight loss. Baby boy wants food and wants it every hour or so. Since he only gets food every 3 hours, he spends a good chunk of the in between time crying and fussing for more food. Poor guy. He's done with the steroids on Sunday, then hopefully he won't be as hungry and fussy and he'll still be breathing well. We shall see!

 

Baby boy with only his feeding tube!

Amelia, pretty little stubborn Amelia. All the nurses come over and tell her how pretty she is. It's going to her head haha. She seems so sweet as long as she's happy and you're not making her do something she doesn't want to do. I've never made her do anything until now. Now that I'm trying to nurse her, her true personality comes out. And behind that sweet little girl is a very smart, conniving, stubborn little girl. She knows how to nurse. 100% knows how. She's even been so crazy as to do it sometimes for 15-20 minutes. She gets 1/3-1/2 of her feeding when she does that. She does great. And then, when she realizes what is going on, she stops, and for the rest of the day WILL NOT even consider the idea of nursing. She will just clamp her mouth shut, close her eyes, and put this little grin on her face as if to say "ha ha ha you can't make me!" She forgets that I'm bigger and stronger than her though, and I will win this little battle. It's just going to take some tricks on my part. She has her tricks...the crying and whining and faking asleep. So now I just need to step up my game and figure a way around all of her tricks to just make her nurse. She has to eat somehow. Apparently taking away the feeding tube to force her to eat isn't very nice haha so I just need to be more creative ;) But she's doing great :) She's 3lbs 10oz at the end of the week and getting bigger every day!

Don't be fooled by her sweet face.

Next week we'll keep on nursing, the twins have their first field trip to the eye doctor and we'll see where things go. Hopefully by the end of next week we'll have a better idea of when they'll be discharged. At this point, they just need to eat better! Here's hoping!

1 Month Birthday!

I can't believe it's been 1 month since I gave birth to the most beautiful babies in the world! Ok, maybe I'm just a little bit biased. As much as I would have liked to skip this whole NICU thing and just had 2 healthy full term babies, I would do it all over again to have my wonderful babies.

Here's a quick look at where they started...

 

And today...

Jackson
Length-40cm (15 3/4inches)
Head-27cm
Weight-1308grams (2lb 14oz)

Amelia
Length-39cm (15 1/3inches)
Head-27.5inches...she would get my big head. Sorry baby girl!
Weight-1367 grams (3lb 0oz)

What big babies they're becoming! Slowly but surely :)

A lot of people have asked me how big they have to be to go home. They don't have to be a certain size as much as meet certain criteria. Obviously, they have to be able to breathe on their own with no help at all (so Mr. Jackson needs to get rid of that CPAP). They also have to be eating on their own, either at breast or by bottle, and gaining weight while doing so. The minimum size is around 3 1/2 pounds and gestation is 35 weeks. They also have to be able to keep their body temperature while out of the incubator and keep their heart rate up while sitting in a car seat for over an hour.

When they meet all of these simple little tasks, we can discuss discharge. They meet 0 of them right now. But I'll keep you posted as we check things off the list and get closer to discussing the big "D".  Obviously, we have at minimum, about 3 1/2 weeks to go since they are currently 31 weeks and 4 days...or would have been had they stayed in my belly. Their development is similar to being in my belly though, their sucking skills, alertness, and certain other development areas follow along so that's why the 35 weeks date is still important. Their growth and other development, like their lungs, are slowed or changed because of their early birth though. So they still follow along with my gestation, even though, technically, it's over.

So that's the basic idea...and here are some funny pictures on their 1 month birthday! They might hate me for these when they get older...at least Amelia will. Bahahaha I love being a mom! Wait til I get out the matching outfits! :)

 

"Look what I can do!" He's such a little show off ;)

 

haha she made cuter faces while posing but this one is too funny to pass up on. I love you Amelia darling :)

A Day In The Life

Today they had to put a heparin lock in so my sweet baby boy could get a blood transfusion. I stepped out of the room while the nurses put the lock in, it can get crowded by their beds, and came back when they were done. Jack wasn't crying at all. He's usually incredibly fidgety and he was just still, with the saddest look in his eyes that I've ever seen. I wanted to hold him and hug him and kiss him and make him feel better, but all I could do was look at him through the plastic and put my hands through the holes to touch him. I wanted so badly to make him feel better, but I couldn't do anything. And you thought watching your kids get shots was bad. My heart broke in a million pieces looking at him. My kids, in less than a month of life, have gotten more needles in them than I've probably had in my entire life. They don't cry or whine anymore, it's just part of their lives. I hate that it has to be like that for them.

p.s. donate blood, it could help save a baby like mine. And don't use the "I hate needles excuse". If my 2lb babies can handle it, so can you.

I love my handsome little guy so much<3



















and because I can't leave out my Mia bug in all of her cuteness....

She says Happy 4th of July and she'll only wake up for fireworks...or daddy :)

Lessons Learned

I've learned quite a few things from my 3 week NICU experience. I'm sure I"ll learn a lot more in the next 5+ weeks. Here are some things to know if you or anyone you know has to go through a NICU stay with their little one.

1. Never wear eye make-up.Crying happens too often for mascara.
2. Always wear pants, no matter how hot it is outside. The babies are kept warm in their incubators, the rest of the place is freezing!
3. Don't bring preemie clothes or hats to compare to your baby, even if you think they look small enough. When you see how big the clothes are next to them, you'll be super bummed.
4. Pack food...hospital food=blahhh (I actually learned that from my 2 week hospital stay). But if you want good food and you're at the same hospital my kiddos are at...1st floor coffee shop. Why do they get better snacks and food than the cafeteria? I don't get it.
5. If you're breast feeding, put on nursing pads or an extra blanket when you kangaroo. Things get messy from your hormones gushing while cuddling with your bambinos.That's all I'm going to say about that.
6. You can stay there all day, even if the doctor tells you that you need to try to live a normal life and do things for yourself to get your mind off of the NICU. My mind is never off of my babies, no matter what I'm doing. I feel much more comfortable being there with them and knowing that they're safe....even if I am freezing and hungry some days ;)
7. Trust the nurses, but take cues from your own babies. I knew Jackson wasn't feeling well for a day before they told me he had a virus. Mom's know. Let the nurse and doctors know what you know. It helps everyone in the process. The nurses and doctor's are in and out and change. Even though you're not with your baby 24/7, you still know best.
8. Don't pay attention to babies coming and going...it just gets you down seeing a baby born after yours and leaving before yours do. Or maybe that's just me.
9.I may just be super uncoordinated, but don't wear clothes that you don't want breast milk on. Don't even ask how things go when I'm doing the hindmilk thing.
10. Don't go near snack food. I am drawn to sugar and I think it's because I'm so emotionally and physically drained from this whole process. I will eat an entire large bag of reese's pieces in 1 pumping session and not think twice about it. Ask my husband. And I still could pull off parking in the "Expecting Mother" parking spots. I wonder why. And that seems to be all that people bring me. I get a lot of "Poor girl, here's some chocolate" vibes. I love the chocolate, I will eat the chocolate, I don't need the chocolate. Please bring fruit :)

So we'll see if things change over the next few weeks or what other lessons I learn along the way from this experience.

Week 3

Week 3 was a really crazy rollercoaster for me. There were a few ups and a few downs. The downs were a lot harder. I'm getting a little sick of the NICU process. I want my babies home. Every day I don't see progress I get discouraged. It's hard to see the finish line so far away and as the days tick by, it gets harder and harder instead of easier..

So the good:

• Mia was weened off of the CPAP and did wonderfully. She tolerated being only on nasal canula at 21% and was breathing great. She would have a few episodes of apnea and bradycardia's but nothing not expected. They have both been getting caffeine since week 1 to help prevent them.
• I started doing hindmilk, so I would pump a few minutes, put the foremilk in 1 container, then pump the rest of the time and put the hindmilk in another container. The nurses only fed the babies the hindmilk, which has all the fat in it. This helped them gain weight. End of week 3 weights we have 2lb 9oz babies.
• They both were taken off of their bili blankets and were no longer our little glow babies. But their color was much better, so we didn't mind ;)
• Digestively, they're doing well, taking breast milk down their NG tubes. The breast milk is being fortified to get in a few more calories. Also, they're getting sodium in their feedings because they have low sodium. They continued to increase their feedings and were up to 21cc by the end of the week. No digestive issues yet, thank goodness. We'll see how things go as the feedings keep increasing. When they're 32-33 weeks we'll try to start nursing them...I think that's when the real excitement will start.

The bad and ugly:

• Jack was also weened off of the CPAP and was doing ok until he had been off for 24 hours. It was just too hard for him to handle. He was always a few days behind Mia respiratory wise so he just couldn't keep up with her. He went back on the CPAP but by the end of the week, they were trying to ween him off again, this time taking it a little slower.
• Jack spiked a fever and his platelets increased. The Dr said it was probably some kind of virus, which they wouldn't treat. We just have to wait and hope he takes care of it on his own. His fever stayed down though, even with the high platelets so hopefully he's working it out of his system. 
• My sweet Jackson...they found a lump on his head. They aren't sure what it is but they're keeping an eye on it. It's outside of the skull so they think something from the IV he had in his head a few days ago. It seems to be getting better, slowly but surely.
• Poor Jackson...as if he hasn't been through enough already...apparently on an early scan right after he was born they noticed something they thought was an intraventricular hemorrhage (IVH) aka a bleed in his brain. They did a follow-up scan that came up clean. Well this week's scan showed the same IVH as the first scan, making them think it really is there. It is minor (grade 1) and looked the same as the initial scan. So on the plus side, it wasn't getting worse, and they said it can take some time it to be absorbed. There are a lot of risks with an IVH that scare me to death, but we just have to wait and see how things go. We're hoping and praying he won't have any permanent brain damage from the bleed.
• My darling Mia, she's doing so well. Her biggest issue is having some leftovers after feedings. They are just refed and she handles it well. She also can't be out of the incubator very long or her temp drops..even though she's definitely the chubby baby. They think she just needs to grow more to control her temp better.

The moral of the story...week 3 was rough. They're stable and breathing and eating and pooping and peeing so I can't complain too much. They both love to kangaroo and will cuddle right up and stay there for hours if they could. I also think they've both learned my touch. They seem much calmer when I do things with them, than when the nurses do. They also will calm down when I put my hand on them if they're upset or being grouchy (ok...Jack is usually the grouchy one, but you see what the poor boy has been through). They love when I rub their backs or put my hand over their heads. Mia loves it when I get some baby lotion and rub it on her back. She just closes her eyes and makes her little half sleepy smile. Jack loves it when I pat his back when we kangaroo and will stare at me like I just took away his favorite toy when I stop doing it for a second. They also both love their pacifiers and have been getting really good at sucking, which is great because in 2-3 weeks I'll start trying to nurse them. They open their eyes so much more and will respond to your voice and look right at you, instead of just staring into space like before. Jack is a curious george and always looking around when he's awake. He'll look at me when I talk and it seems like he's smiling. I know they can't purposely smile yet, but he seems happy to hear my voice so that makes me happy. They both close their eyes and seem very calm when I play them their daddy's recorded book and they hear his voice. It's nice that they seem to know us. 

 Happy 3 weeks little ones! Mommy and daddy love you both to the moon and back<3

Week 1

To celebrate the twins' 3 week birthday tomorrow I thought I'd give an update of some important accomplishments...maybe even some setbacks of them week through week.

Since I'm just starting this we'll have to start from the beginning...so week 1! Days 0-7. What did these kids do...let's see...

Jackson:

• Jack went off the vent and onto CPAP, then back on the vent, then back to CPAP to stay. It took him a minute but he got the hang of the breathing thing.
• He beat off his e coli infection with lots of antibiotics.
• Gained some weight from fluid (was over 1000grams for a little) but lost it again and got back on track with his weight, dropping a bit below his birth weight then back up to his birth weight by the end of the week.
• Was put on a bili blanket for his bilirubin (common with all preemies and most newborns, no biggie), then needed another bili light above him. He was our little glow baby and wore sweet shades. You could see his incubator as soon as you entered the NICU.
• Had some heart issues, but the dr decided not to treat it since it wasn't causing problems, so let him get past his infection then deal with the heart stuff.
• Started eating a few cc's of breast milk down an NG tube, but got most of his nourishment through IV fluids, vitamins and lipids.
• Got another dose of surfactant for his lungs to help with their development.
• It took until the end of the week, but daddy got to hold Jack on day 6 and mommy got to hold Jack on his 1 week birthday. 

Amelia:

• Dropped down to 1lb15oz at her lowest, but again, typical for all newborns to lose weight. Started to gain some weight by the end of the week.
• Had the same heart problem as Jack, was treated with baby motrin and problem fixed right up.
• Went on the biliblanket a day after Jack, just because she was jealous of the glow.
• Ate the same as Jack, started getting a few cc's of breast milk just to prep their stomachs.
• Was on the CPAP from the beginning and did well with that.
• Needed to get surfactant as well for her lungs. She was breathing good, but just needed a little help.
• Mommy got to hold baby Mia on day 3...best day EVER. First day holding either of my babies. Daddy got to hold her the next day and we rotated her until we could hold both babies, then switched off babies :)
• Heard her first sneeze (going on the nasal canula to kangaroo with us tickles their noses) , she could squeeze your finger and could open her eyes for a quick second, but didn't like it very much. Both of their skin and eyes were very sensitive the first week so they weren't big on lots of touching and definitely not fans of any light.

So that's a quick summary, by the end of the week they were stabilized and on the right track. Daddy came to be with them on Friday night, and stayed all week. I was in the hospital most of their first week so we could go back and forth and see them all the time. Leaving the hospital for the first time without them was nearly impossible. I don't think I've ever cried so much. It hasn't gotten any easier to leave them.