Thursday, December 31, 2009

Merry Christmas!

I know a holiday behind, I did actually write most of this on Christmas Day!  



Christmas Eve we wrote Santa an email telling him our change of plans, we were planning on going home last night, but an ice storm is on the radar, so we stayed at Ronald McDonald house. Hailey was worried Santa wouldn't know where to find her, hence the email. :)


Hailey and Landon (another RMH family) making cookies for Santa Christmas Eve!  They did such a great job!





Hailey woke up bright and early Friday morning, SO excited for presents!!  Once we got downstairs, she was excited to see the gifts, but disappointed Santa wasn't there.  When we asked what was wrong, she said she really wanted to give Santa a hug!  How precious!  :)  Santa got her a couple gifts, Nich & I and her brothers and sister.  She kept asking, is this mine?  Is this mine too?  


Christmas afternoon our neighbors at the Ronald McDonald house watched Hailey as Nich and I went over to visit our other munchkins.  We got to hold all of them together again!  This time I did too! 


 
  
 
My new favorite pictures!!!  :)  I love that Brooklyn is wide awake contemplating something! 


Later Christmas night we took Hailey to see Princess and the Frog and she watched about a good portion of it, then it got to a creepy voodoo man and it scared her.  We snuck in to Alvin and the Chipmunks which Hailey LOVED!  It was her first time to a movie theater and she was just in awe.  We'll probably stick to animal movies for awhile, she still hasn't seen any of the Disney Princess movies becuase they all have a scary part.  So, hooray for talking animals!  I can't wait for next year's Christmas with kids all over the place!

Tuesday, December 29, 2009

13 weeks

What an awesome week! Our babies are 36 weeks gestation and have grown leaps and bounds this week! It seems like some weeks are stagnant, not making much progress (sometimes set backs) and then they take off! This was one of those weeks! We also had a family meeting with the docs on Monday to get up to speed on everyone and found out what the next steps are. For so long a stable day was our next step. Now for the last couple weeks, they’ve been stable (minus surgeries) and we’ve been just watching them grow. Don’t get me wrong, I love those days, but we wanted to know what our next goals and milestones were. Brooklyn and Brennan are on the fast track homebound and Landon may be a couple weeks behind. It’s so exciting to hear the doctors even saying the word “home”! To come home, they need to be keeping their temperature up, breathing and eating - in some fashion. Going home on oxygen is a possibility and also gavage feeding. They need to be taking at least 50% of feeds by mouth (bottle or breastfeeding) and the rest we can out in a feeding (NG) tube. We definitely want our babies home as soon as we can, but don’t want to rush them. It would be hard enough to take care of one with a feeding tube or oxygen, let alone 3, plus a toddler! So the doctors said it may mean an extra week in the hospital, but that’s ok with us. I’d rather have them good and ready to come home. Well, without further adeu, here’s the cuties in their Christmas outfits – thanks Britt! :)




Brennan Nicholas 4lbs 1oz (birth weight 1lb 4oz) – yep you read it right, 4lbs!!

Brennan has been a breathing rockstar! During the family meeting, we were talking about taking them home on oxygen and the next day, Brennan decided he didn’t need it! He was breathing without any help! He only needs his extra flow while he’s eating. He has reflux so he desats (oxygen saturation dips below 80%) when he’s eating. He does so much better when he’s nursing than bottle or tube feeds, the lactation consultant said he’s doing great. He is up to 39 cc of 28 calorie fortified breast milk to help him gain weight. He’s still a little sluggish in that area. He’s been taking about two bottles per day (about 14% of his feeds by mouth), so we’re getting there! He is getting so much more expressive! I could just watch him all day!








Landon James 4lbs 9oz (birth weight 1lb 7oz)

This little man has done pretty well. He got off the ventilator on Saturday and back onto CPAP. He’s only required about 30% oxygen. Even though he’s on such a small amount of oxygen, he still needs the forced air to inflate his lungs.  This is huge for him though - he just needed a little kick in the pants to start breathing again! :)  Landon's allowed to have the nasal cannula on for social time :)  It's called "social cannula" so when we hold or bathe.  He's such a handsome baby!  (with cannula we could see his face!)  He again is doing the best at gaining weight - he's almost out of preemie clothes!  We're so proud of him - he's had the most challenges and is such a strong, determined little guy!   
  


 Brooklyn Danielle 4lbs 2oz (birth weight 1lb 3.5oz)

She and Brennan have been neck and neck this week!  For quite awhile actually!  She is now on nasal cannula 24 hours and only about 21-30% oxygen!  She is also doing a terrific job eating!  She's taking about half of her feeds by bottle and finishing a good portion of them!  We also tried nursing and she did wonderful!  She was so excited and very interested the entire time!  She's starting to sneak ahead of Brennan - I really don't know who will be first home.  She had a little bit of a rough time recovering from eye surgery (she did with the PDA ligation too), but is now back on track and doing great!  

We are so proud of our babies and so thankful for the blessings they are!  God is truly working in them - healing their bodies and helping them grow.  For awhile I was trying to think of what I could have done to hold them in longer, but have accepted (with God's peace!!) that He has a plan and I don't understand and don't need too.  We have met and been touched by so many families that we won't have known otherwise.  These babies are such fighters and will be so strong!  I need to step back and remember that.  Katelyn has touched our lives in so many ways and through her we have been strengthened more than we ever thought possible.  Her life has a purpose and we are learning to celebrate that.  


Hailey out of the blue said she heard Jesus talking to her from her heart about Katelyn. I asked her what Jesus said and she said his daddy is going to give her back to us. Oh to have the mind of a 3 year old sometimes!  Now that we’re getting things ready for the babies to come home and talking about homecoming more, Hailey has been asking about Katelyn more often. Wondering when she’s coming, saying she thinks she’ll be the first one home (in reality she is – home with Jesus!). Whenever we tell her Katelyn’s not coming home and she’s with Jesus, she becomes really quiet. She shouldn’t have to deal with this. She shouldn’t have to try to understand why her sister died, but we need to help her, with God’s wisdom. She is such a precious girl, so caring and understanding. She’s helping us heal more than she knows. Hailey has such a connection with Katelyn.  It has been really difficult to know what to say about Katelyn that she will understand but not scare her.  Please pray for Nich and I to have the right words to talk and explain about Katelyn as Hailey asks more questions.

The babies are progressing and doing so well, but please continue to pray!  I can't even put into words how thankful we are!

Wednesday, December 23, 2009

12 weeks!

Can you believe your eyes?! I've posted our 12 week update before they hit 13 weeks! :) This is a quick update and I'll hopefully post the 13 week update tomorrow!


The babies are changing everyday. It's been a really busy week - we bought a minivan. Those of you who know me, know that was the last resort - I really don't like them, but it works and fits all of us! PLUS Nich got us a really great deal. Here's a snazzy picture of it, a Buick Terraza. We were able to trade in our other car and for about the same amount!



Hailey was the star in her daycare Christmas program! Singing all the Christmas carols and even did the hand motions! Daddy was a hero and brought up her Christmas dress for the performance and she just glowed! This is such a fun age! Pictures to come (once we get our camera and cord at the same time!)

Brennan Nicholas 3lbs 11oz (birth weight 1lb 4oz)

Brennan has had a great week! While Brooklyn was recovering from surgery and Landon was getting ready to go Tuesday, he and I just hung out. I held him quite a bit, Dan from Physical Therapy stopped by to show me stretches for him, and we got to nurse! He was pretty tired from PT, but once he knew what we were trying to do, he perked right up! The lactation consultant was very impressed with him! So he's up to 1 bottle feed and 1 nursing session each day. Getting bigger and bigger! He's also on nasal cannula 24 hours a day - he's made it almost a week! He's on room air (21%) too, which means he only needs the pressure flow, not the oxygen. We are so proud of him, they continually amaze us!





Landon James 4lbs 9oz (birth weight 1lb 7oz)

He's still our big boy! Landon's up to 41cc of fortified breast milk every 3 hours. He's still eating through his feeding tube and can't start bottle feeding until he's off the ventilator and CPAP. CPAP puts too much air in his belly and he wouldn't be able to suck on the bottle with the breathing tube in his mouth. We'll get there! He is big enough to pop his top though! He's able to keep his temperature up on his own so doesn't need the top of the isolette on. He is much more sensitive than Brooklyn and Brennan so we have to talk quietly around him now that he can hear everything! Here's Landon 1 day post surgery on the ventilator. He had a pretty rough recovery, scared Mommy on Wednesday! He slowly got back up to his ornery self - we love that about him!


Brooklyn Danielle 3lbs 10oz (birth weight 1lb 3.5oz)

Our sweet Brooklyn. This picture really describes her! She's our sweet little girl. When she opens her eyes, she has the most caring looks. She's the easiest to change her diaper (Brennan's the worst!), handled surgery well, and most times seems pretty content! Not too much of an update for Brooke...just doing her thing - feeding and growing!

Each of them are doing great on their own thing - Brennan is our snuggler and doing a great job breathing. Landon is pretty ornery and doing a great job keeping warm and gaining weight. Brooklyn is our bright-eyed active one and doing a great job eating. It's so fun to see their personalities already. We've been bonding with them as much as we can, and really getting to know them. Each day they amaze us...God amazes us! On paper, our kids shouldn't be doing this well. We know why! :) We are so thankful for every poopy diaper, every cry. I'm sure when they're all crying, hungry and poopy we'll want to pull out our hair, but we're thankful!

Tuesday, December 15, 2009

More ROP...FULL update

Update #2! Landon went down to the OR at 7pm and didn't come back until 11:30pm. Brennan's took 5 hours, Brooklyn's 4 and Landon's 4.5 hours from the time they went down to the OR until they returned to the NICU room. Today was the first day I was able to go down with them and wait in the holding rooms. It was so different, there were families of all ages (well under 18) waiting for all kinds of surgeries. Each baby and I cuddled and waited for surgery together. Both of them fell asleep! When they came back from surgery they were intubated (on a ventilator again) due to the anesthesia. Brooklyn is still pretty sleepy from the drugs and is not ready to breathe on her own yet. She has been Bradying and De-sating (low heart rate and low oxygenation) since she got back and it's mostly due to her just riding the ventilator and letting it do all the work. Landon is still on vent too. They actually had to give him paralyzer to calm him down as they brought him back to the NICU! He was waking up in a matter of minutes! I hope we will be ventilator free tomorrow! Thank you God for enabling the surgeons to have steady hands and help work Your miracles!

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Brooklyn came through great! She was first case this morning and actually went down 45 min later. Landon on the other hand went down and came right back up! Shortest laser surgery ever! :) They are way too far behind to keep him down in the treatment rooms so brought him back up to the NICU room to wait. Hopefully he'll go later today if not, first thing tomorrow morning! I'll keep you posted again! :)

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This tine we'll get 2 done in one day! Brooklyn and Landon both have Retinapothy of Prematurity (ROP) like Brennan, only there's developed to stage 3 a week later. Here's a link to Brennan's big day and what ROP is all about. (He's doing great by the way!!) Brooklyn is scheduled for laser surgery at 7:45am and Landon will be at 3:30pm. As we're learning in the OR, please start praying at the scheduled time - they may go back a couple hours late! :) This procedure is common among preemies, the three now have 2 surgeries in common! They will have all had this surgery and their PDA ligations, for a total of 9 surgeries to date! Praise God for all he's brought us through and promises to be with us all the time! Please pray for them and us today - Daddy is working and I'm here with them. Will keep you posted! It'll be a long day!

Monday, December 14, 2009

11 weeks!

We're so close to 3 months! I can't believe it - I know I say that every time, but it's so true! I was away for about a week with a cold and the babies look so different! They're getting that newborn glow! :)






Brennan Nicholas 3lbs 4 oz (birth weight 1lb 4 oz)



Brennan has surgery this week to correct Retinapothy of Prematurity (ROP). See the last post for details. He's doing great! His eyes looked a little cloudy and had some blood in them, but now they're clearing up. Brennan's slowing making that weight gain too - he's up to 31cc of fortified breast milk (add more calories to make it 26 cal) every 3 hours. He's just too active to keep weight on! Nich learned this week what PT we need to do to help him, bringing his arms and legs in together to the center of his body. He likes to sprawl out, but needs to work on center alignment. Babies usually develop this as they get bigger and run out of space in utero, but apparently he was too squished being on the bottom! He graduated to only nasal cannula! He had been rotating between that and CPAP for a couple weeks, but no he can handle only nasal cannula and most of the time on 21% oxygen (room air!) Wahoo!! We're so proud of him!



Quality time with his Jackal! It's helping keep his pacifier in! :)



Giving his nose a break! He's so cute!!

Landon James 4lbs 6oz (birth weight 1lb 7oz)

Where did all this weight come from?! Landon's almost into Newborn clothes! He's doing great - still growing and growing! He's up to 37cc of fortified breast milk every 3 hours! His oxygen settings are slowing decreasing, but we're still on CPAP. CPAP helps keep his lungs inflated by forcing more air than nasal cannula. As long as he's on low oxygen, he can take all the time he needs to get off CPAP (don't want to be a snuffalufagus forever though!!) Landon's ventricles are slightly bigger than his last head ultrasound, but no bigger than they've ever been. They decided to see where they are next week and evaluate pulling more fluid off (he's still having 5cc removed daily). He doesn't seem to mind - actually feels relieved after! We'll see what next week brings. He's such a trooper! Hailey found a picture of Hailey when she was first born and Landon looks like her!



Brooklyn, the first to get a bottle!

Brooklyn Danielle 3lbs 4oz (birth weight 1lb 3.5oz)

It's official! Brooklyn can get a bottle once a day to get her used to it! She's at 31cc of fortified breast milk like Brennan and so far as taken 10cc in a bottle and the rest through her feeding tube. She did great! The nurse prepped me, saying she'll probably choke, stop breathing, turn blue, brady (bradycardia - heart rate slows) etc. But she didn't!! She did great! She was so awake and inhaled the bottle! I did have to put my finger on her chin to give support, which helps them swallow. Other than that...all on her own! I was thrilled! :) She can have a bottle when she's on nasal cannula (9 hours on, 6 hours on CPAP). I didn't get a picture of her laying down like the boys, but she's just as big as Brennan. They've been neck and neck! Brooklyn is being put in her "princess throne" a make-shift bobby for preemies where she's more upright and can look around! This works on her head control - I've been meaning to post a picture! I WILL get to that! She's growing great! We'll continue to work on her head control and bottle!

Our babies are growing so fast right in front of our eyes! They constantly amaze us! God has certainly worked a miracle in them - now they're the most stable on the unit! 23 weekers?! :) Everyone's been asking when we can bring them home and the answer is soon! Not tomorrow, but hopefully someone within a month! This isn't official from the doc's...just parent intuition! Waiting for anything else, a month seems like so long, but when it means bringing home a baby, it might as well mean next week! I'm trying to figure out how to put a poll on my blog, but you'll have to be thinking of who will be first! We are thrilled that they are progressing so well! Praise God! There's no other way! Hailey's been calling to check up on them lately, just an awesome big sister! She actually talks to the nurses! They're so good with her!

On another note, please keep Darren and Katie in your prayers. We have gotten to know them while at the Ronald McDonald house and sharing the same NICU room. They had triplets born at 23 weeks 5 days and all their babies have now passed away. Roman died on Tuesday, he was 7 months old. It was devastating losing Katelyn, I cannot imagine having to go through this 3 times and not be taking any babies home.

Tuesday, December 8, 2009

Brennan's ROP - UPDATE!

Brennan did great! He didn't go down to surgery until 5pm and came back just before 10pm last night. I should've asked you to START praying at 2:30! You never know how the OR will go! He was inubated (on a venilator) for the procedure, but they were able to extubate to CPAP when they got back up to the NICU. He woke up well from anestesia and even opened his eyes when he heard my voice! I expected him to have patches over his eyes, but they're just a little cloudy. Thank you all for your prayers!

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Prayers for Brennan please! Each of the babies have been getting eye tests periodically and this last one, Brennan's came back as Stage 3 (out of 5) Retinapothy of Prematurity (ROP). The blood vessels in his eyes have grown abnormally and are putting pressure on the retina. We don't want it to detach! He will be having laser therapy surgery at 2:30 tomorrow. Nich will be able to be with him, I'll be working and I'm still fighting a cold so I'll be praying from a distance! I'll update everyone as soon as surgery is over. You'd think we were pro's at handling surgery, but each time I get a little nervous. I know God has my baby in His Hands and will guide the surgeons (and the laser!). Thanks everyone!

Sunday, December 6, 2009

10 weeks old!

I can't believe our babies are 10 weeks old! That's 33 weeks gestation! They're getting so big! Not much to report this week...which is wonderful!!!!!!!! It's so nice when we call to check on them and it take about 30 seconds! Monday was eye test and ultrasounds and Tuesday they each got their 2 month immunizations. They're just growing and breathing! They have been through so much and this is their break - just grow! :) Take a look at our crew all decked out for the holidays!



Brennan Nicholas 2lb 12oz (birth weight 1lb 4oz)

Brennan is still doing well! He's still trialing between CPAP and nasal cannula. 10 hours on cannula, 2 hours on CPAP. He still has his security blanket of CPAP. If you remember, 2 weeks ago Brennan's newborn screening came back abnormal for Biotindase Deficiency. (Click here for that blog post). Well, Nich & I were tested since it's genetic and we can back normal! Brennan was retested that same time and his levels were still low. They are still giving him Free Biotin 3 tims per day and he'll be retested at 40 weeks gestation. He doesn't have the deficiency, but the extra Biotin won't hurt him. Ok with us! On a non-medical note, Brennan is a hearthrob at 10 weeks old! The nurses are falling in love with him! :) He's just SO CUTE!! They are filling out and looking more and more like cute babies everyday! He looks at you with the cutest expressions!



Landon James 3lb 12oz (birth weight 1lb 7oz)

Yep, you saw that weight right! He's a whole pound bigger than his siblings! Landon is doing great gaining weight, eating about 32cc every 3 hours (Brooklyn is at 25cc and Brennan at 26cc)! He's doing really well on his CPAP too, down to about 30-35% oxygen (21% is equivalent to room air). Dan the PT Man started working with Landon this week. His muscle are a little stiff, but with early intervention, we can help him relax them and make more fluid movements. Landon has 3 different brain issues that put him at a higher risk of cerebral palsy, which is not diagnosed until about 1 year old. The more exercise he gets, the better for his brain to make the right connections. He hasn't been diagnosed with anything and we don't know if anything is wrong, but Nich & I have been looking forward to learning from PT and doing everything we can to help Landon reach his fullest potential. Each of our babies are such miracles and we're so thankful for them! We love them no matter what, and want to do all we can for them! They've done such a great job fighting for their lives, how can we do anything less?! Each of them have a distinct personality that we have fallen in love with! Once you make eye connection with Landon, you can't turn away! He could tell you so much in that moment. He's so loveable!





Mommy feeding Brooklyn for the first time!



Brooklyn Danielle 2lbs 11oz (birth weight 1lb 3.5 oz)

Brooklyn has been so much more awake lately! We'll look over at her and she's just looking all over, taking in her surroundings. I love this stocking picture of her - she's smiling! :) She actually really enjoyed being in the stocking - she was moving her legs up and down like a mermaid! Brooklyn was the first to try a bottle too! She's not quite officially there yet to try it daily, but we gave her a taste and she LOVED it! She took 5cc and they other 20 cc went in her feeding tube. It took a couple minutes to get that little bit down, remembering to breathe and swallow, but she did great! Anytime after 33 weeks gestation they can start trying a bottle when they're on nasal cannula. This is such a big step and we're so proud of her!



Big Sister Hailey!

Each week these three continue to amaze us - God continues to amaze us! They are still supposed to be cooking for another 7 weeks, but they're eating, breathing, getting physical therapy, developing their personalities! God has given them so much strength and resilience, they are learning and developing really well! One of the doctors told me this week that we're in the home stretch, we can see the light at the end of the tunnel, soon we'll all be home! Hailey has been having a rough couple weeks and can't wait until we're all together. She and I decorated our house a little for Christmas on Sunday and she said "Mommy it's almost Christmas time! My babies come home after Christmas!" She is such a great big sister! She might want to send them back once they come home, but right now she can't wait to have us all together! Oh! Something else cute she said - we were in the waiting room in the hospital and a couple walked out with their baby and she said, "Why do they only have one baby?!" She doesn't know any different, we're not the norm! These babies have turned our world upside down, but isn't that what any new addition does? :)

Tuesday, December 1, 2009

9 Weeks and a VERY Happy Thanksgiving! - Finally! :)

We are so blessed! We got to spend time with the babies Thanksgiving morning and lots of family this weekend. This week our babies hit 32 weeks! This was a huge milestone as the humidity in their isolettes was turned off which means they get to wear clothes!!! My, do we have cute babies! We've been able to hold someone just about every time we visit so we've spent every spare minute up there visiting! We're able to help with the every 3 hour assessments and can change diapers, check temps, bathe and hold! That's why this update is to late! I've been working on it for a couple days now! :) Check out these cute matching outfits, courtesy of Nana!



Brennan Nicholas 2lbs 10oz (birth weight 1lb 4oz)

Brennan's job is to feed and grow (and breathe!). He graduated to big boy diapers (size preemie!) to match his brother. From these pic's you can see he's still a little behind! He is still doing nasal cannula trials, exercising his lungs and getting him ready to lose the CPAP! He was going longer and longer each day until Wednesday when he just got too tired. He was on nasal cannula for 36 hours! He did such a great job, but just got tired. We've made a couple steps backward, now he's on cannula for 7 hours, but we're working back up. He's only minimal oxygen (21-25%, 21% is equivalent to room air) but still needs the pressure of the air into his lungs. We're still so proud! Also, our biotindase test results came back - Nich & I's levels looked good, but Brennan's was still low. They began giving him biotin to replace what he's using. It's 3 times a day and goes right in his feeding tube. He'll be tested again at 48 weeks gestation (hopefully at our dr office and not in the NICU!). All in all, Brennan has had a great week!



Landon James 3lbs 6oz (birth weight 1lb 7oz)

Landon is doing great! He's definitley got the growing and feeding job down! He's gaining about 1oz each day! He is making some progress on his CPAP and on Thanksgiving day was able to do "social cannula" while we held him. He was on about 60% oxygen but was remembering to breathe! You can see in this picture he is filling out preemie clothes quite well! Landon is also tolerating the daily resevior taps well and it seems to be helping! His ventricles are about 1cm smaller since they've started the taps. Also in both boys their brain bleeds are maturing (blood is being absorbed by the body and no new bleeding). He still is as wild as ever and we love that!



Brooklyn Danielle 2lbs 9oz (birth weight 1lb 3.5oz)

Brooklyn is now our little one again! She isn't gaining weight as well as the boys so they're keeping a closer eye on her. Making sure she's not burning too many calories! She's on CPAP and nasal cannula trials and doing great - she definintely is still very sensitive and can tell when the nurses turn her oxygen down 1%! They try to sneak up on her and turn her down so she doesn't notice! :) She started PT this week too and got a great report! She has "great head control and muscle tone." How can a 2lb baby have good head control?! They're miracles! She gets to sit up in a make shift bobby to improve her head control and is absolutely adorable! I haven't been able to get a picture (I need to leave a camera at the hospital!) but will post it right away! She is our little peanut, so precious!



Nich & I holding all three for the first time on Thanksgiving Day! (L-R) Brennan, Brooklyn and Landon - he got his own arm because he just about weights the same as the other two combined!

I had just gone downstairs to play with Hailey (it was my shift) and about 20min later one of the Respiratory Therapists came down and was going to watch her for a couple minutes, Nich was holding three babies!!! I pretty much ran up to their room and was so thrilled! He was beaming, a little nervous with three bobble heads, but you couldn't wipe the smile off his face! We got quite a few pictures of the kids and one shot with all of us. We have been waiting for this day!!! Every big milestone is bittersweet. Our family picture is not complete. We are so thankful everyday for the strength of these little ones, but also miss Katelyn so much! Seeing Brennan and Landon together and imagining the fun they will have as they grow and sad for Brooklyn that she won't experience that same bond with her twin sister. Hailey is so thrilled to have a sister and I'm sure will be so good to Brooklyn, but it's not the same. We did make a Build a Bear this week to remember Katelyn. Meme is going to knit a sweater with a "K" on it for the bear and we can take family pictures with all of us and that bear. It's a subtle reminder of our angel.


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Bro's hanging out for the first time! A couple times Landon would look over at Brennan like, "Hey! What are you doing here?" We LOVED watching them interact!

We have so much to be thankful for this year. God has been so real to us, giving us the strength and peace to endure. We are so thankful for our little miracles and their amazing big sister. Our household will be blessed for years to come! We're thankful for the opportunity to meet, love and care for Katelyn. We're thankful for family, friends, churches and those we've never met for all your prayers and support! We have been overwhelmed by all your love! We're thankful for the NICU staff and their God given talents to help our babies grow and survive - it's amazing what they can do! I can't even express how gratitude, there's no words big enough! THANK YOU!

Tuesday, November 24, 2009

Great Job Breathing!

Landon is on CPAP!! We are so proud of him and sooo happy to snuggle! He made the switch on Friday and I raced down to UofM after work to hold him! (I mean, drove very carefully :) Since Friday he has made lots of progress on the PEEP, from 8 down to 5! He's also requiring an ok amount of oxygen. He was just tired of the ventilator! I really can't express how excited we are to be able to bond with him after so long and all he's been through. Friday night I held him and sang, told him about work, told him how much we loved him & how proud we are, and gave him a pep talk to keep making progress!





One of Landon's favorite nurses, Becky



Next!...Brooklyn has started trialing on the nasal canula! She is such a fiesty girl - she kept pulling her CPAP mask off so the docs figured they'd at least give her a try! She did great for 1 hr yesterday twice (once while Daddy held her) and 2 hour trial today. It's so good to see her face and she is adorable! We're a little partial! :) It is so exciting to see the babies making great progress - there's always that possible bump in the road, but we are on cloud nine right now! Taking it one day at a time!

Brennan has also been a breathing superstar! They are increasing the length of time he's on nasal canula and he was due for 12 hours on canula and 2 hours on CPAP but he did great and didn't need the rest. He's been on it now for over 24 hours! And he's only needed minimal oxygen, about 22% - 21% is breathing room air! Way to go Brennan!

Also, the Jackson CitPat wrote an article about our journey on the FRONT PAGE of the Sunday paper! Here's the link!

Thursday, November 19, 2009

8 weeks and my how we've changed!

It is getting harder and harder to keep updated! We are able to do so much more with the babies and we want to spend every second we can with them - even if it means changing a poopy diaper! Nich and I did manage to sneak a chance to go on a date - dinner AND a movie! Our kids have been rockstars this week! I went back to work today and really needed them to have a good couple days! It was so hard to leave them last night, knowing I wouldn't get to see them today, but once I got back to work it was just like old times! I called and got an update on them on my way to work, got an update from Nich and noon and 3pm to help me get through the day. I miss them, but know they're in good hands! Hailey and I got to have MUCH needed Mommy-Hailey time :) We went out to one of her favorite restaurants, McDonalds (I know I wasn't thrilled, but really felt like spoiling her!) and shared a meal. Literally, shared her chicken nuggets and apple dippers and my chicken wrap and fries. She's so precious, every couple minutes she would wrap her arms around my neck and pull me close. I LOVE this child! :) After dinner we played "Hailey and Mommy," where we switch roles and she takes care of me, i.e. Hailey. She even got toys out for me to play with while she picked up her clothes to vacuum her room! Tomorrow after work we'll head back to the Ronald McDonald house, our home away from home!




November is National Prematurity Awareness Month, and March of Dimes gave gift bags to each preemie family in the NICU yesterday. It had beanie babies, onesies and a preemie specific baby book. The outfits are preemie size but still are way to big! Here are the babies' new friends - the bear is for Brennan (he's so cuddley!), multi-colored jackel is for Landon (he changes colors when he's upset and is such a wild man!) and an inchworm for Brooklyn (she scoots all over her bed, and arches her back, moving like a worm).



Brennan Nicholas 2lb 3oz (birth weight 1lb 4oz)

Brennan is still doing great, gaining weight and breathing! He's now trialing nasal canulas for 6 hrs at a time, then 6 hrs on CPAP. Working his way there! He was so active last night, it was hard to get a good picture! Video hopefully coming soon, it was just way to large to load (gotta work my technology magic!) He is steadily increasing his feeds and on fortified breast milk (26 calories every feeding/every 3hrs). His skin looks so much better and they're really starting to fill out and look more and more like babies! It seems Brennan may have a metabolic disorder called Biotinidase deficiency, this was found yesterday after 2 abnormal newborn screening tests. Check this link for more information. It is not confirmed since he is so young and had many blood transfusions, but to help diagnose, Nich and I had to have the same blood test to see if we are carriers of this. If he does have this, it seems he may only have a mild case which can be treated with Free Biotin supplements daily. He is being followed by experts at Detroit Medical Center as well, where the treatment was initially researched and developed. We should find out the results before Thanksgiving and will keep everyone posted. Brennan also started physical therapy on Wednesday! He will only get PT while he's on the CPAP so he doesn't tire out, but he seemed to do great! They are strengthening his arms and legs by putting him on his belly on a pillow and strapping him in his snuggly. This way he has to work his muscles to fight against the straps to move. He seems to be doing really good! We've had a couple desats (when his oxygen saturation dips below an acceptable level, below 81%) and bradycardias (low heart rate), but recovers really well on his own. He has his occassional big poop, that throws him into desats and bradying, but all in all he's pretty stable! We're thrilled!



Landon cuddling with his toy and sucking on his pacifier! We had to cut a part out so it would fit around his vent tube.

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Landon James 2lbs 15oz (birth weight 1lb 7oz)

Big boy Landon! He has officially graduated into big boy diapers! That's size Preemie, rather than Preemie XS. I was so shocked when we checked his weight this week! He really is almost 3 lbs! He has had a better week, after getting over pnemonia, the surgery to place the resevoir and aspirating his food into his lungs. This last episode did get him a shiny new breathing tube! He is also sprinting to see if he can be extubated (removing breathing tube) and moved to CPAP like his siblings. He's had 2 trials and done well. We'll see! Hopefully in the next day or so if he's ready! Occassionaly he gets mad or stretches really big and stops breathing for awhile (called apnea). We can tell he's doing this even before the ventilator picks it up because his face turns bright red/purple. He usually recovers on his own which is fantastic! He doesn't need to be stimulated to breathe again. Feeding wise, he is the front runner now! Their feeds are increased everyday as tolerated and Landon is up to 27cc every 3 hrs! That's about 1oz! No wonder he's gaining so much weight! :) Neurologically, there hasn't been any changes since last week. Neurosurgery says he's doing great and his head is healed enough for CPAP when he's ready. Daily the docs drain 5cc of fluid out of his reservoir and will continue unless it needs to be increased or if he's able to drain the fluid himself. Once he gets to 2 kilograms (about 4lbs) he is big enough for a shunt if he still needs help draining the fluid. We'll cross that bridge when we get there. We are so thankful for a ball of energy! I finally got a video of his eyes we've been talking so much about! He's bean-bagged for his own protection, so he's not moving all over like usual! :) Funny how they have such spunk already!



Brooklyn Danielle 2lb 3oz (birth weight 1lb 3.5oz)

Brooklyn is doing great as well! Last week she had some bouts of Tachycardia (gets it from her mom!) but doing much better now. She is also tolerating being held so much more! Nich boasts of holding her the longest, but I think she and I just worked her up to it! He held her for over 1 hr and the most she tolerated with me was 30min. She's just not the touchy/feely type I guess. I did put my hands on her while she was in her isolette just to get her used to touching more. She'll get there! She is doing well eating and breathing too! That's really their biggest job right now! She and Landon are getting 24 calories every 3 hrs. If she wasn't so active she'd keep on some weight! Her new trick is turning her head! She'll be looking to the left, like in her picture this week and all of a sudden she does a face plant, then moves it to the other side! I tried so hard to get a video of her this week turning her head but didn't have any luck. I sat there for 30 min with the camera ready, but turned to a nurse to tell her what I was doing and when we looked back she was already mid turn! She is so active, arching her back and scooting and turning her head. I can't explain how good it feels to watch them be so active! They have been lying in their isolettes for so long and to watch them move is thrilling! We really could just watch them all day long!

We just praise God for these good days! We almost don't know what to do with ourselves! :) Daily, we witness miracles as these three grow! We have met so many wonderful families and had many great opportunities to share our journey and our faith. This we are so thankful for. I heard a song on the radio yesterday by Everyday Sunday called "Hanging On" that was perfect for me. Reminds us that no matter what hurt we feel, remember He is God. We turn to Him for comfort during our tough times and give Him praises for the joy!

Monday, November 16, 2009

7 weeks!

Thanks for being patient while I post this update! Now that it's almost time for 8 weeks! :) It's been so busy now that we can do more with the kids! Now there's bath time, diapers and holding! Wouldn't miss one of these opportunities!





Brennan Nicholas 1lb 15.5oz (birth weight 1lb 4oz)

Brennan has had a great week! He is being trialed onto nasal cannula and doing really well. The first day he went for 10 hours, but got really tired at the end. Now he's on a schedule of 3 hours on nasal cannula, 6 hours on CPAP throughout the entire day, of course only if he's up to it. I love seeing his face! We've got some cute babies! :) When we hold him now they let us do it when he's on the nasal cannula. He's so much more awake and active. He studies us and follows us with his eyes. Brennan's also getting so much breast milk! His amount changes each day, but I think it's about 13cc every 3 hours. They're getting 22 calories every feeding - crazy that I was eating 4500! When they were first born they were getting 8 calories for the entire day. They have come so far! We are so proud of our miracles!



Landon James 2lbs 5oz (birth weight 1lb 7oz)

Landon has had an eventful week. Earlier this week he developed pnemonia, which wasn't the best for his lungs! Also, today (Thursday) he had a McComb reservoir inserted in his head. This will allow doctors to drain fluid off his brain (due to Hydrocephalus) as often as necessary. This will decrease the pressure put on his brain. The surgery was this morning and he came through perfectly! Praise God! It was hard to see my baby go to the OR. I was able to walk with him out of the room and down the elevator to the OR, but they turned the corner and we headed back upstairs to wait. Pastor Ken and my parents came down to be with me, as Nich had to work that day. I'm so thankful for them - keeping spirits up and praying for Landon. This picture above his post-surgery. He just has a small bump on the top of his head that they can insert a needle into a tube that goes down his ventricles. His ventricles are swollen and the plan is to remove 5cc's per day and see where we're at. If his ventricles don't go down and drain fluid like it's supposed to he may need a shunt when he's about 4lbs. He's gaining weight so fast, that shouldn't be too long! Good news - Nich and I got to hold him before surgery on Tuesday night (surgery was originally scheduled for Wed morning). He did great! He was so awake and also studying us. He got the hiccups while I was holding him! So precious, now we've held all of our children! What an amazing feeling that is!



Brooklyn Danielle 1lb 15oz (birth weight 1lb 3.5oz)

Scooter Brooklyn! This week Brooklyn was moved to CPAP and she loves her freedom! Here she is in her pre-scoot position! This girl can move! We tuck her snugly around her and think she's in there good, but then we look at her again and she's out of it and moved on her bed! She's gotten up against the glass before! She can also turn her head from side to side, even with the heavy CPAP on! Brooklyn is the leader with her feeds, getting 18cc's and 24 calories. They removed her PICC line, as she's only getting breast milk, and not needing TPN (her special iv nutrients). That's a huge milestone! She'll be putting on weight quickly, if she doesn't use too much energy breathing with CPAP! I've said this before, but it's so neat to see their personalities showing, they are distinctly different babies! We love them so much!

Amongst the wonderful progress and happy moments with these three, this week was also really hard for us. Katelyn was cremated on Friday and Nich and I picked her up from the funeral home on Sunday afternoon. The funeral director was so flexible and sensitive with us, coming on his day off because it was an afternoon Hailey wouldn't be with us. On Friday when I got the call that the cremation was done, a flood of emotions came. I knew she had died, but it hadn't been final for me until then. In the back of my mind, I was waiting for her to come back, as weird as it may sound. Jesus raises the dead and my kids are such miracles, I thought it wasn't impossible. On Friday, it was final. My daughter's spirit immediately went to be with Jesus on September 27, but I wasn't ready to give up her body until now. God's peace certainly passes all understanding. Though I felt the pain of losing her all over again, I also felt joy for the brief time we had with her. We are so thankful for the time with her both in the womb and outside. She was always the most active one, sliding up and down her sack at about 18 weeks and bouncing the Kleenex box with Brooklyn at 22 weeks! We didn't have much time with her once she was born, but have happy memories watching her grow which we are so blessed to have. My mom found a really neat service called Memory Glass that we are getting to put her ashes in. I'll post pictures of that once it arrives. Continue to keep us in your prayers as we plan a memorial service for Katelyn and continue on enjoying Brennan, Landon, Brooklyn and Hailey.

Also, we were able to go back to church on Sunday!!!! It was so good to be back, words can't express how awesome it is to be around such prayers warriors! We shared pictures and updates of the babies and were overwhelmed by so many people praying for and loving us! We have a renewed amazement of God's strength, peace, power and healing. How awesome to praise with fellow believers! Daily we are blessed by our little miracles and the plan He has for them. Thank you all for continuing to lift up our family! Glory to God!

Tuesday, November 10, 2009

Lots of pictures! :)

I couldn't think of a clever name for this post! Here's lots of pictures of the kiddo's, each are captioned so you know who's who! The last couple days have been filled with excitement!



Nich caught this great photo of Hailey! She's off before you know it!



Miss Priss herself! We braided her hair so it'd be curly the next day like Mommy's!



Daddy's first time feeding and holding Brennan!



Brennan on nasal canula. He's trying it...3 hours on, 6 hours on CPAP. Way to go Brennan!



Big eyed Landon :)



Daddy holding Landon for the first time!



Mommy holding Landon, first time too!



Landon's having a fit! :) Rocky's a swingin!




Mommy holding Brooklyn for the first time!



Brooklyn sucking on a pacifier!

Sunday, November 8, 2009

Who's that baby under the CPAP mask?



It's Brooklyn!!! You probably couldn't tell since they look so much alike! :) That's right though, we have 2 beautiful babies on CPAP! This time it was intentional. She's so good at pulling out her tubes that last week she extubated herself (pulled her own breathing tube out), that they decided to try CPAP. She just wasn't ready, but this time she was wiggling around quite a bit and did good on the "sprinting" exercises that we tried again! So far so good!

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Brooklyn moving around getting used to CPAP! I just love to watch them move!

Thursday, November 5, 2009

Holding a Baby!!! :)

I think my face has been beaming all day long! This morning when I walked in to visit the kids, Brennan's nurse greeted me then asked if I got to hold him yesterday. I said no, she seemed surprised and I told her I didn't ask. She asked if I wanted to hold him and I don't think she really needed an answer! Of course!!! I've been wanting to hold them since the day they were born, but wanted to do it when they were ready. Today was Brennan and my big day!



Here's super proud Mommy and tiny little Brennan! He's just 3oz shy of 2lbs. It hardly felt like he was in there, but every so often I felt him wriggle around. Just amazing, word's cannot express, just amazing!

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I tried to catch some of his little noises on video! Forgive my left handed video, but you can hear him cry! More like squeak! :)

I got to hold him for 1.5 hours and we both did great! I have to admit I was a little nervous holding him, especially on CPAP since when he wriggled, his mask would slip a little and expose a nostril. He just needed to be adjusted, then all was well. We can hold him every other day for now...Daddy gets Saturday's shift. I bet he can't wait! Today one of the nurses was so excited and said, today was the first day holding one of my babies. I knew what she meant and it actually didn't cause me to be upset. I just smiled and remembered holding my sweet Katelyn. This was different, Brennan was squirming and crying! It brought joy back to my arms. Thank you God for Your peace and comfort and allowing me to really enjoy this moment with Brennan!