Thursday, December 31, 2009
Posted by Jennie at 11:44 PM
Tuesday, December 29, 2009
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! :)
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
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
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!
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! :)
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
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 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!
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
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
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.
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!