Party of 4: NICU day 29

 Update: The babies are 4 weeks old today.

Luke was taken off of the big nose tube (C Pap) and now he is on the clear nasal cannula alike his brother, Yeahhhh! They have increased his feedings to 24 ml, still 8x a day. He is weighing 2 lbs and 14 oz and doing very well today.

Carter was a bit fussy today...what baby doesn't get like that? They have increased his feedings to 21 ml and he is weighing 2 lbs and 15 oz.

I was holding the camera while Sean was holding Carter, so we only got pics little C. 

one of my favorites

Sleepy: NICU day 28

Long day today and I'm feeling stressed about getting things done. Catching up, redoing and reteaching is never fun. So much to cover in so little time but I did enjoy seeing everyone at school today and all the kiddos.

I'm off to the hospital and will update on the boys later. I wish I had my own isolate like the boys; I'd crawl in and not come out for awhile.

 

These pictures were taken tonight. (blurry pics are from our iphone)

We swaddled up Carter and I held him in the rocking chair and rocked him to sleep. Kangaroo care is really special but tonight, I could actually look at him and he was wide awake for awhile. Tonight was just amazing and nothing else in the world mattered. Just what I needed! 

 Tomorrow night we'll hold Luke

Surprise: NICU day 27

The boys are looking cuter and cuter everyday and I am so anxious to bring them home.

Today was another great day for them. Carter was taken off of the big blue nose tube and now he is on a small clear cannula which is very exciting because he is really progressing. We can see his whole face now without all the mouth tubes, nose tubes and hat. He no longer has a big machine working for him.

Carter

Luke (without the tube for a second)

 The nurse said that Luke is just a day or two behind Carter's progress but he is also doing very well. I think the steroids are really helping their lungs. They are both taking 18 ml of milk eight times a day now and they both weigh 3 pounds!!! They have had several really good days in a row so I hope and pray they can keep this up.

Thank you for all the prayers so far. God is working miracles on these little guys.

I start back to work tomorrow after being off for five weeks and I think it's going to take a lot to get me back into the routine of things. Three weeks and then we're off for Christmas break..I can do it!

Breathing: NICU day 26

The babies were doing great again today. Sean and I both got to Kangaroo with them. Sean held Carter and I got to hold Luke for the first time. Carter did well minus the few times he pulled his tube off of his nose. Sean really enjoyed holding Carter and the closeness they got to share. While I was holding Luke, he got a little too comfortable and decided to just stop breathing. Machines and red flashing lights started going off and I think my heart stopped. The nurses ran over to wake him up by rubbing on his back and tapping on him to simply remind him, to breath. They say that preemies sometimes can get so comfortable, they just forget to breath. I think I needed oxygen after that episode. Luckily, it only lasted for several seconds and then we were back to sharing the special moment together. 

And we know that in all things God works for the good of those who love him.
Romans 8:28

God is doing Wonders: NICU day 25

What a Wonderful Thanksgiving!! Sean and I have so many blessings to be thankful for this year and to top it off, the boys were doing really, really well on Thursday and Friday. We took pictures of them on Friday and the one of Carter is so good. The nurse took his little nose tube off for a few seconds so we could get a good picture of his face.  The picture of Luke is just precious. His little hand laying on his face is so sweet. He's doing really good sucking on the paci to help keep his mouth closed. And check out his diaper! Let's just say that Luke's system is working very well. They have graduated him to larger diapers to say the least.

Luke

Both boys are doing wonderful on their steroids and are increasing their amount of milk very rapidly. Luke is off the Oscillator and the throat tube, and is back on the nose tube like Carter. The nose tube still helps them to breath, as the boys need to keep their mouths closed, but it is a HUGE step in the right direction.

Carter  (the best picture we have so far)

Both little ones are getting bigger and they seem so much more aware of everything. Hopefully in a few days I will be able to Kangaroo with Luke. This was a great Thanksgiving and God is doing wonders with our precious boys.

Boost the lungs:NICU day 23

Last night was a little unsettling at the hospital. Right as we walked in, we were told that they ran out of breast milk and they had to start giving some formula.  I'm standing there wondering WHY DID A NURSE NOT CALL ME TO SAY "Hey, bring more milk next time you come." We have a freezer FULL of milk and if I'm working my hiney off to pump every 3-5 hours and waking up at all hours of the night to get it done, then I deserve that reminder. (Yes, I'm also getting up at those crazy hours to prepare my body for when the babies do require a feeding or attention... so I am doing my best to get used to it. I'm not quite complaining--sleepy, yes, but not complaining.) I just didn't understand why one of the many nurses we have couldn't do us a small  favor and give us a phone call. I'm being a little selfish......I know everyone gets distracted and I know they're busy, but wouldn't it make sense after grabbing the LAST syringe of milk to make the phone call to bring some more??? Grr!

Okay, I'm over it. Sean drove home last night and brought all the rest we had in the freezer so the babies are gettin' the good stuff, again.

On the other hand, the doctor needed our consent to start the babies on a new treatment for their lungs. They are both going to be getting steroids (Don't remember the exact medication) to help boost and develop their lungs and make them stronger. Over the past week the boys have had good and bad days, but have not progressed forward, so the doctor believes this can help them get off the ventilators. It makes us very concerned about the use of steroids as their is a risk for infections, and the possibility of brain damage. The way the steroids were given in the past was with a higher dosage and  over a longer time period of time and with this method it has shown that it can cause brain issues. This new procedure (they've done for only the past four years) consist of getting a lower dosage and for the duration of just 12-14 days. There has not been any evidence that it has caused issues, but our doctor says that it could happen. So we are stuck with a catch-22. We can keep them on the ventilators and risk long-term damage to the lungs; and they could still need to get the steroids anyways, or we give the steroids now and have the slight chance of brain issues. Sean and I talked with the doctor about the percentages and we even asked if this were his child (or in this case, his children) what would he do? We decided to go ahead and give the steroids as the probability of damage is lower than just keeping them on the ventilators. Even with the steroids, they could still need some support but they believe that it's near 100% chance Carter can be taken off the ventilator and a 70% chance Luke can as well. Even if Luke does not get off immediately, they believe he will be able to shortly afterwards. It's a lot to take in but, it is the best solution that we have right now and after listening to the nurses (who know our babies the best) this is the best solution to their medical needs.

With all that said, please continue to lift Carter and Luke up in your prayers.

Sleeping: NICU day 22

Here's Luke while getting some blood. Can you see he's getting a little pudgy?

Here's (no neck) Carter, but apparently a squooshed neck doesn't interrupt his sleeping.

Kangaroo:NICU day 21

I got to Kangaroo with Carter again (3rd time) and it was even better than the last two times. He was awake, looking up and all around and I think I gave him about 75 little kisses on his head.

Both little ones were doing great today as of 11am. Luke was getting some blood but doing fine. They are getting fed every 3 hours now and they are going through the milk fast. I gotta keep up with them! I noticed they are starting to get a little chub on them, yeahh!

Weight Gain: NICU day 20

Luke currently weighs 2lbs 11oz and Carter currently weighs 2lbs 13oz.

They are both getting fed every three hours now. Yeahhh!

Like newborn infants, long for the pure spiritual milk, that by it you may grow up to salvation– if indeed you have tasted that the Lord is good.
1 Peter 2:2-3

Check out these adorable pictures of newborns in the Gallery/


more later after we see them at 4pm..

All Smiles: NICU day 18

Yesterday, Mom took off school to hang out with me and get some things done. She helped me do so much so Thanks, Mom! We organized the nursery from all the wonderful, WONDERFUL gifts Sean's school got us and we ran errands. The nursery is really coming together and it really excites me. Sean put the stroller together and we put the car seats in it so I started pushing it around the house. I love it! Here's a pic.

ALL ABOARD!!!!!!!!!!!!!!

Last night was a completely different night in the NICU. We have had probably 7 different nurses (they work 3 on and 4 off) but the last 3 nights, we've had an awesome nurse; his name is Loyd (I always wanna call him Nurse Focker but that totally doesn't fit) and he is Amazing! He is so thorough, he's funny but also very serious, he breaks everything down for us to understand and he gives lots of hugs and most importantly he's so good with Luke and Carter! He just stands out to us a little more than some of the other nurses but they are all really great.

We also met a few other families during our visit last night and it's very interesting to share our stories. We realized that we're all in the NICU for the long hual which will be comforting to see the same faces through this experience. We all delivered around 27 weeks (very ironic) and our little ones are all on similar machines..for now anyway, although things change every single day. When I heard a story of another baby being born at 27 weeks and only weighing 1 lb and 6 oz, I gotta really be thankful for delivering twins that were over 2 lbs.

8weeks Sonogram

Again, things do change everyday and everyone's situation is actually very different regardless of gestational age and birth weights. Talking to other families who are in the same situation is very reassuring. So, for Sean and I last night, it was a very positive evening! Here's also why..

Carter was soooo PRECIOUS last night!!! He was wide awake, big dark eyes (they look grey like his Momma's eyes) and he was looking all over the place. Anytime I would talk he looked directly at me and it just melted my heart because a little part of me started to believe he may be recognizing my voice a little more and more. Yayy!

Sweet little Luke...... being on the Oscillator machine, he's pretty out of it. They have to keep him sedated so he doesn't become uncomfortable while his lungs are wiggling. He was pretty sleepy and all tucked in really cute. He tried to open his eyes a few times, but they seemed to be just too heavy. He looked very peaceful overall.

I cannot express the excitement of just thinking about bringing them home!!!

Beyond the wires: NICU day 16

Amy has requested that I post the update on Carter and Luke today. So here it goes.

Luke – Is “enjoying” his new breathing machine and they believe it is helping him in removing the air pockets that have caused his issues in his lungs. They do not know when he will be strong enough to breathe on his own but say each day he is getting a little better. Feeding may start soon again and this will help him in gaining weight. The disturbing image is that they have a needle stuck in his forehead to get and give blood. They said his veins everywhere else are to small and that it is actually less painful in the forehead, it just looks bad but is suppose to help him.

Luke was very content and sound asleep

Amy and I – We had a great day as my school threw Amy and me our first baby shower and did an amazing job. It was nice to just enjoy great cake and food with people that truly care about us. The genuine love, thoughts, and prayers that my co-workers have for my family is something all people should have in their lives. I have only known these wonderful people for a year and they have touched my heart in a way that they will never truly know. On top of what the wonderful people I work with did, and also getting us so many of the things we need, my mother informed us that if needed she will take time away from her work and take care of the babies when Amy needs to go back to work. That is a huge blessing as we have not been able to find a care-giver for April and May.

Carter – Is doing better with the tube helping him breathe. The reason they believe his lungs started to digress was that he has an infection. They have him on antibiotics and believe they caught in early enough that he should recuperate just fine. Amy might even be able to Kangaroo care tomorrow. The good news is that they did another scan of his head and the slight brain “bleeds” (don’t know technical name) are gone and he will be just fine. They will test him again in two weeks to make sure.

I think this is Carter's default face. (Daddy changing his diaper)

Both – They both needed more blood with all the blood tests that have been taken and so they received blood transfusions. They will probably need some more as they are still just too young to replenish their blood as fast as it is being drawn for testing.

Looking past all the machines, tubes, wires and beeps we have ourselves two little precious angels, both a little fisty in their own way. I think they are developing little personalites already and I also believe that they are looking more and more like their daddy. I might be out numbered, but what girl wouldn't wanna be around three handsome boys! (haha, I say that now.. I'm sure you're thinking Wait until they start playing sports and they start smelling and they come home covered in dirt and everything else that boys get into. Growing up with two sisters, we would just fight over clothes hangers and the hair dryer.) Overall, Tuesday afternoon and into the evening was pretty good for both babies. (The nurse would call it a "forward" day.) 

Stayin' Busy: NICU day 15

The babies are 2 weeks old today (gestational age: 29 weeks tomorrow)

Luke weighs 2lbs 3oz (back to his birth weight) Luke is having a better day today. He is getting blood again sometime today and still on high frequency ventilator.

Carter weighs 2lbs 7oz (2 oz more than his birth weight) Carter is needing more blood to help with oxygen and breathing. He is doing fine overall just not as active as before. They are holding off on feedings for both. No kangaroo care today either =(

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I'd like to say I've kept CVS photo lab in business the last few weeks. I've printed off more pictures in the last two weeks than I think I have printed off in the last two years! Here's what I've been up to while being at home and still can't drive yet. With all my pictures now, I'm simply reminded that I have two little bundles of joy coming home in just a short time after Christmas. 

Here's what else I've gotten into. We love Christmas so we love decorating the house. I'm probably a little OCD when it comes to matching Christmas decor with the colors in our house so we did buy a new color of decor and ornaments this year. LIME GREEN! I love it. Our inspiration of color..

My aunt reminded me last night that it's perfectly okay to have a completely emotional day of tears galore, but that I also have to take some time and do small things that make me happy...well, getting the Christmas decor out BEFORE Thanksgiving made me smile really big so that's what we did.  

Sean was such a sport about it all. Well, when is he not a sport?? He pulled all of the bins out of the garage and he emptied them to see what we all had before we went to Hobby Lobby x4 to buy more stuff. 

I skipped a day of visiting the babies yesterday. I was needing a quiet day at home to relax and not do a single thing. 
I wanted to skip hearing the beeping machines, 
the funny hospital smells, and of course
the information overload that we get some days.  

Overload: NICU day 14

Just when things seemed to be getting easier to handle; and by that I mean the feelings and emotions, we take some steps backwards. Sean and I had a great weekend together. We had a nice dinner with my family, we shopped for Christmas things and we ended the weekend with a wedding. As we had just gotten into the car to head out to the wedding, the hospital called... and there went all my eye makeup! I was a huge Debbie downer at the wedding because I couldn't get the babies off my mind. It was a beautiful wedding but I just couldn't keep myself together. It was the first normal thing I had actually gotten out to do since the twins were born and I couldn't even act like myself. I wasn't hungry, I didn't drink my one glass of wine and I was definitely not dancing....so Sean and I had to head out early, as Sean was pretty out of it too. My tears just poured out in the car; I couldn't stop them.

Carter, the stronger of the two (so we thought) has been struggling while breathing lately so he is now back on the nose tube which basically breathes for him. They said his lungs have either collapsed or he has an infection. Then the radiologist came to talk to us and she was either speaking French or German. No, not really it was just INFORMATION OVERLOAD!! She used words and terms and abbreviations that were so far over our heads. I didn't have one ounce of energy left in me to ask questions; my tears were sitting on the edge of my eyes and I was trying to keep them from falling. If I moved anything on my face or even if I tried to ask questions the tears were just going to pour out uncontrollably.

{notes from nurse: Carter-got blood transfusion at 11pm Sunday night, takes over 4 hours--blood was low, hope to get him going again, feedings stopped while red blood cells are working, will start feeding again tomorrow hopefully, giving body a rest all today, no kangaroo care today. will reevaluate everything tomorrow.} 

Luke on the other hand got another X-ray last night to check on his lungs. The lungs are still storing pockets of air so it's making it difficult for any air to get through. The radiologist explained that he could possibly have one of three things. These three unnamed things (simply because I cannot remember the correct terms right now) can all be things that could affect him later on in life. That's if his lungs don't develop correctly in the meantime.

{Luke is on a different ventilator now, called an oscillator which gives vibrations for constant breathing flow, nurse is coming down on setting already which is good, hopefully this is not long term. Nothing unusual. not being fed anymore until later tonight maybe, awake and alert, so shouldn't be sick}

Both babies were on really high oxygen last night and Carter is going to need a blood transfusion in the next day or so. They both grabbed on to our fingers and they held on so tight, more than normal it seemed. They would squeeze anytime the nurse would come by to check them. If felt like they were trying to say something..

Lookin' Good: NICU day 12

Like they say, No News is Good News. The babies are doing good. They've started to get 2ml of milk four times a day so hopefully they can start putting on a little weight.

This was Luke last night. He looked better than ever! Eyes open in all!

Luke with his lovie.

Here's Carter, we got to do Kangaroo Care for the second time.  He has learned to blow bubbles!

This was Carter after we tucked him back in with his lovie.

Dear Friends: NICU day 11

Dear Friends, Family, Colleagues and Neighbors,

I wanted to let you know that Sean and I greatly appreciate you thinking of us during this time at home and while we were at the hospital.  We are so fortunate to have people in our lives who care about us as much as you do.  The snacks were great treats in between fabulous hospital food and liquid diets.  The cards and letters have lifted my spirits and reminded me that there are many people praying and thinking about our precious "little ones."  The baby gifts, the homemade dinners and the gift cards have all been so great and thoughtful. Again, I am so thankful for your thoughts and prayers during this time.  Please continue to lift Carter and Luke up in your thoughts and prayers as they grow stronger each day. 

Love,

Amy and Sean 

Special card: NICU day 10

Pictures from last night.

It is so hard seeing Carter's face like this. With the nose tube, they want him to keep his mouth closed so they strap his chin up so tight. The tube gets pressed in so hard that he's getting a bruise under his nose. It makes me so teary eyed seeing him like this.

 

And here's sweet little Luke. He's been doing good. He's still on a little oxygen (35%) which isn't too bad considering we breathe at 21%. They are working on switching him back to the nose tube again within the next day or so. Those velcro stickers should be gone tonight when we visit as he is done with the photo therapy and the goofy glasses. They GLUE those stickers to their head.......it hurts just thinking about it being pulled off!

I received a card in the mail today from Dr. Nelson. Yeah, that put a huge smile on my face! (if you don't know Dr. Nelson, she's just the Assistant Superintendent , ehh no big deal.. no really, she is A big deal. She also used to be my elementary principal. =) So sweet of her!!

Homemade cards: NICU day 9

My substitute had the kiddos make homemade cards for me at school. They are all so cute, but here are a few that I wanted to share. 

That will be me in a few months!!! Nicely drawn.

Soo sweet.

LOVE these kids!!!

Aww! It's amazing how sweet "certain" kids can really be..would've never expected this from this little boy.

Cute-Check! Adorable-Check! and I hope they are funny, too!

I'll be back before you know it......... (thanks to FMLA for only 12 weeks. I gotta use my weeks when the babies come home...not now!!!)

So cute.

We're off to the hospital here in a minute for the first time today. We usually go twice everyday but it's really wearing Sean out. He's resting right now and it's 5:48pm, poor thing..he's exhausted. His school has been providing us with dinners...WHAT A HUGE BLESSING!!! I cannot write my Thank You notes fast enough! The meals have been sooooooo good, even the gift cards--gosh I can't even begin to thank you all enough. My mom and I ran errands today..I was slow as a turtle but we got a lot done. Well, I printed out pictures of the babies to start an album and I got some closeup pics for some nice frames. We looked for receiving blankets to take to the hospital but could not find any soft ones. What's up with that, shouldn't all baby blankets be SOFT? We bought some paint so I can paint these crosses for the nursery. (crosses were a good find at Canton) The bottom cross is chocolate brown I but still need to finish the others.

The nursery is coming along pretty well. Melissa organized all the clothes that we've gotten from friends, gifts and the small splurges that I couldn't resist at the stores. Angie is working on their names that will display above their cribs..can't wait to see what they look like! I think that's all for now. 

 These pics were taken last night. We just love when they squeeze on to our fingers!!

Luke's little fingers

Carter's little hand

Prayers for Luke: NICU day 8

Poor little Luke. I got a phone call this morning at 6:15am from the nurse letting me know that Luke had a rough night with his breathing. He was taken off the nose tube and put back on the mouth breathing tube along with the support of 85% oxygen. The babies haven't really needed any oxygen support since they were born so this was definitely a step backwards for him. They took an X-ray and it showed that his left lung was still storing small pockets of air and it's not allowing much air to get through. He is doing okay so far..

The best feeling in the World!

On the other hand, I got to start Kangaroo Care with Carter last night. They placed him inside of my shirt for one hour and he just slept; well I took a small nap too. His heartrate was great and the nurse said he was just lovin' every minute of that closeness. The bottom picture was after we took him out of my shirt and took the blankets off. Isn't he tiny?? Not the best pic of me..by any means..I look pale and sick. But whose looking at me, right??

My tiny little twin # 1

I'm off to the hospital to check on Luke in a little bit. I feel like I live at the hospital..........

Today at the hospital was a little rough. They had all these screens around Luke for sterile purposes. But to anyone who didn't know what was going it, it looked like a really big deal as my baby was all blocked off for anyone to see him. Blinds were closed all around...ugh! They were inserting an IV in his other arm for feeding purposes. They took a second x-ray of his lungs and they were looking much better this afternoon. Both babies have the IV in their arms now for better feeding. They take a small tube out of their umbilical chords and use the IV for the same purpose.

7:30pm..off to the hospital to read some bedtime stories.

It's the small things: NICU day 7

Luke's feet

 Bless Luke's tiny little heart. He has a big IV on his wrist again for feeding. He wasn't eating through the tube that was going through his belly so they're trying another method. He lost a little more weight, so he's back at 2 lbs exactly. The nurses say he's doing fine and they're pretty positive about his progress, so I'm not too worried. 

Luke 

Carter

Both babies are now on small nose breathing tubes which just assists with their breathing. They are breathing on their own pretty well but this tube is a reminder for them to continue breathing.

See the green IV? Luke's hand is all wrapped up in that. It looks horrible.

Although the babies look almost worse now...squooshed faces, caps and nose tubes..they have both taken a step forward.

I got my staples out today and it was absolutely painless, phew!!

Tonight, we get to start Kangaroo Care with Carter so I will actually get to hold the sweet little pea. If everything continues to go well with Luke, we should be able to hold him within the next day or so. Fingers crossed for that little fighter.

I love you: NICU day 6

Carter

Luke

I don't have much to write today as both babies are doing okay. They look a little better each day we visit and it makes it that much harder to leave the hospital. Words cannot express the love we have towards these two little human beings. I remember a few friends and my cousin just recently saying something like, you have no idea what it feels like to be a mother and to love something so much until they actually enter the world. Boy, they were absolutely right! The feelings are so hard to explain. 

 This is the last day for the little breathing tube on Carter.

He's taken a step forward to a nose tube (c-pap). 

Carter knows his Daddy

Luke, asleep like this.

Luke looks pretty skinny here but he's still the same weight as a few days ago. He's already developing a little personality if you can't tell. (Pictures during phototherapy to prevent jaundice)

Luke

It's more obvious each day that Luke was just not quite ready to enter the world yet as he has a few more small complications than Carter each day. He's already had a blood transfusion, which was successful. He has a poor left lung which still has a lot of developing to do. He's had several more X-rays than Carter to check on different areas. His feeding tube was far enough in his tummy and they have been trying to fix that for a day now. He's had quite the number of pokes and prods on his ankle and wrist for different IV's and drawing blood. He is still on the c-pap machine that covers a lot of his face. Poor thing!

I'd say Carter owes him big time when they get older. Overall, he's a fighter and he's hanging in there. They say we will see lots of ups and downs throughout the next couple of months; hopefully Luke can overcome all of these complications and catch up to his brother. The nurses remind us each day that they babies are doing very well for their age.