Sunday, January 31, 2010

What a roller coaster...

Today Landon had to be put on Nitric Oxide on top of the Oscilator.  His body is still not oxygenating how it should.  He was on 100% oxygen on the conventional ventilator, now 100% on the oscilator and adding to that the Nitric Oxide.  He is still a puzzling case...the last urine culture showed the UTI is gone. (great news!)  The bad news is they think this infection could have spread into his bowels, his blood and possibly pneumonia.  He has sepsis.  He is being treated with a broad spectrum of antibiotics that should cover every kind of infection.  Now, the docs are not so worried about the infection (because of the range of antibiotics), but respiratory distress.  The new problem they are trying to figure out is whether or not he has Acute Respiratory Distress Syndrome ARDS (all the babies had Respiratory Distress Syndrome when they were born - this is a different kind).  This has been such a roller coaster of a week.  We are so incredibly proud of Landon - he is such a fighter!  He has been through so much and has scars and battle wounds.  We call them God's miracle marks. :)  When medicine has hit a dead end, God never fails.  We are praying for healing and comfort for Landon and comfort and peace for our family. 

The bittersweet news is Brennan's coming home today!  I'll write about that later - we're waiting for discharge right now.  It's just so hard mentally and emotionally to be so thrilled about bringing him home, when we know is brother is so sick.  Landon's in excellent care and so many are lifting him up.  God is the Great Physician and in that we put our trust!  We'll keep you updated on Landon - it's been hard to know what to update because things change so quickly.  We truly appreciate all your prayers and encouragement! 

Saturday, January 30, 2010

Mommy's Little Hero

Landon's doing better today!  Thanks all for your prayers!  It's been a crazy couple days.

It was really hard to believe he was so sick, but his belly is getting better.  His bowels are getting smaller and his belly isn't as distended (swollen).  At first they thought all of this sickness was from NEC.  It's really rare for babies to develop it again, but that would be our luck!  He had blood in his diaper and coming out of his ropolgo (light vacuum that suctions out his stomach).  This was very worrisome to the doctors.  He small intestines were very large - about triple noraml size with lots of gas inside.  They haven't found a perforation and hopefully won't.  The docs do know he has a Ileus (bowel obstruction), but are not sure to what extent.  The dye from the lower GI study hadn't gotten out of his system so they have to wait to do an upper GI.  Because of the obstruction and being paralyzed, his bowels are working slower than usual.  Once this is out and he's stable, they'll do an upper GI and go from there.  He may or may not need surgery.  This time thankfully it won't be an emergency!  So overall, we know it's a belly issue - just need to wait until he's stronger and infection free to proceed.  Until today all of his lab work (blood, cerebral spinal fluid, nose & throat swabs, etc).  This was until they got a urine sample and today found out he has a Urinary Tract Infection (UTI).  Since it grew while he was on so many different antibiotics they've decided to start him on Meropenin (the big gun of antibiotics!).  He's still on the ventilator but have been able to tweek some settings and still paralyzed.  As long has he's paralyzed, he doesn't clamp down on the ventilator.  We learned the clamping down is part of Bronco Pulmonary Dysplasia (BPD).  He's having BPD spells.  They have been quite sever dropping his heart rate and not allowing his lungs to take air in and out.  Since he has been paralyzed these spells have stopped giving his body a chance to build up some reserves.  They are hoping this will help them buy time to figure out what is causing his challenges.  (last night)
Today they believe that his UTI  may have spread into his gut and now has caused sepsis.  His Lungs are also not doing well.  They are continuing to give him Lasik to help him.  They also have put him on the oscillator to help lower his co2 levels.  Right now he is stable but on high settings and 100 percent oxygen. Landon also had to have the surgery team place a arterial line in due to his feet being really beat up from all the blood gases They have begun to spread out his blood gases which is a good sign but we have a long ways to go.   

Thursday, January 28, 2010

Landon Update

Landon is really sick right now.  He is currently on a medication called Pavalon to keep him paralyzed, due to him clamping down and not breathing on the ventilator.  They want to do a upper G.I. today but do not know if he is healthy enough to leave the room to have the procedure done.  When we meet with the doctors today we will have a better idea of the plan for Landon.  On the bright note even though he is really sick, he is stable right now and one of primary nurses have him which is great for him and us.  Please be praying for Landon he is such an amazing child.  He has so much courage and determination and has blown me away with his ability to fight through so many difficult challenges.


Tuesday, January 26, 2010

Landon's big belly

Landon is really sick right now.  Over the past couple days he has had difficulty breathing and his stomach has been extremely bloated, but the docs haven't found the reason.  Beginning Sunday night all of a sudden his belly was really swollen, but didn't know why.  He had eaten well on Saturday and was on low cannula settings.  Sunday night we got a call from the docs saying he wasn't doing well - there was a lot of free air in his belly putting pressure on his diaphragm making it hard to breathe.  He was going to be put on CPAP.  Monday when I saw him he didn't look good and wasn't his cute ornery self.  He was on more pressure support from his CPAP.  This morning he was even more support when I checked in at 7am.  At 8am I got a call from the docs saying they needed to intubate him (breathing tube for ventilator).  He had a Lower GI test test done today at 9am and he needed to behave for it so they intubated him.  The films showed what they thought was free air, but they weren't going to do surgery at that point.  His umbilical hernia is really large and they reduced it, thinking that may have been the problem.  At noon he was doing better, but then I got a call at 2:30 saying he was really bad and they needed to take him down for emergency surgery.  Needless to say, I flew out of my office and down to U of M.  When I got to the parking lot, they called saying after several consults with radiologists they don't believe it's that immediate and they'd schedule an Upper GI test tomorrow (Wednesday).  They believe that he might have NEC again but are not sure the extent of it.  They also think that his hernia could be putting pressure on his bowels which may cause them to have a hard time restricting and relaxing (allowing bowel to pass).  He's really lethargic, on high ventilator settings and his oxygenation had been poor.  It's hard to see him like this.  Saturday he was doing great!  It's really unbelievable how quickly things can change. At any point over the next couple of days he could have surgery.  Please pray for strength and comfort for Landon, wisdom for the doctors and surgeons and peace and strength for Nich & I.  We'll keep everyone posted! 
Weekly update coming soon...the internet at RMH hasn't been so great.  (I've reconnected 5 times just in writing this!)

Sunday, January 17, 2010

Reflections John 9

A couple days ago I was reading Hailey stories in her children's Bible and one stuck with me.  It's so awesome how you can read the Word time and time again and different pieces speak to you.  We read about Jesus healing the blind beggar in John 9.  You can read the story, but the disciples asked who sinned - this man or his parents that he was born blind...Jesus said no one, "this happened so the work of God might be displayed in his life."  I have been searching for answers about why the babies were born so early, why they have had such a difficult road, why did Katelyn die, and what could I have done differently.  This verse really set my mind at peace.  There may have been nothing I could have done, nothing the doctors could have done to give us 4 healthy babies.  My idea of a miracle was a long pregnancy with 4 healthy babies to bring home with us.  God had something much different in mind.  These babies are truly miracles in a different way.  They are 23 weekers now gaining weight, eating, breathing, doing baby things, talking about coming home!  Combined, they have had 10 surgeries.  These scars are a testimony to His miracles.  These babies will have a story, reminders of God's work.  God has given us strength and peace during these last few months.  He has been so evident in our lives and working in us daily.  We have to trust Him and seize every opportunity He has given us in any capacity.  We have met so many families that we may never have had the chance, families that have lost one of a set of multiples, families of micro-preemies, families of babies that have similar complications.  It is so hard to believe that we have been through so much and our marriage is strong, Hailey is happy and our faith is so real.  That's God's work in itself!  Today is their due date, we are so thankful for what God has done and will continue to do in them and in us!  Happy Due Date my babies!  We continue to trust everyday, you are miracles!

Friday, January 15, 2010

16 weeks!

What a week!  Their inching closer to their due date!  We have been really enjoying our time with them - it's been quiet, they've been stable and we're able to hold and feed so much!  We spend as much time up there as possible!  This week, thanks to Landon and rescheduled surgery, it's been more than usual!  The babies have been really making progress this week - some weeks they're stable, others they take off!  Here are pictures of our beautiful babies!  And did you notice what day this is!?!  Proud of myself! :)

Here's our stud muffin!  He had pulled out his feeding tube so was posing like a big boy! 

Brennan and Daddy being goofy!

Brennan Nicholas 5lbs 11oz (birth weight 1lb 4oz)

Brennan has been making great strides eating!  He's up to 50cc of 28 calorie fortified breast milk.  It's pretty much like sludge, but tasty sludge!  :)  He's been taking most of his feeds by bottle (at least 50% and finishing most of his bottles!).  He is the hardest to burp, but has reflux, so we've gotta get that extra air out!  Also, breathing you see something missing?!  He was weaned from 2 liters of oxygen to 1.5, then 1 liter.  Once he tolerated room air at 1 liter for a couple days, they took off his nasal cannula!  He has been off since Tuesday!  So proud of him!  He's way more portable too!  He's the easiest to move when we hold them all!  :)  It's hard to breathe, keep oxygenated and take a bottle, but he's starting to master it!  He's pretty messy though - here come the bibs!  We're just so proud of him!  He may be the front runner in the home stretch now!

Landon James 6lbs 11oz (birth weight 1lb 7oz)

Every week I am amazed at this little one!  He is doing such a great job gaining weight!  This weight was pre-surgery to it's true, well minus 10cc of cerebral spinal fluid.  You can read his update from surgery, but had a VP Shunt placed yesterday on his 16 week birthday.  He has been down to about 30% oxygen and taking more and more of his bottle.  We're really hoping to see a good difference in him now that he doesn't have all the pressure on his brain.  Already last night he seemed comfortable.  He did get some morphine and Tylenol for pain, but he looks much better!  I love this picture of him too!  He and Brennan do look a lot alike!  More of an update probably next week, he was uncomfortable for the past couple days and now in recovery mode.  Kids are so resilient!  I would've been such a wimp, but he (and so many of the other kids in the OR waiting room) were so brave!  He is a fighter, that's for sure!

Brooklyn Danielle 5lbs 6oz (birth weight 1lb 3.5oz)
Don't let this sweet picture fool you!  She is an angel, but a wide awake, eat everything in sight angel!  Last weekend she took all of her feeds by bottle, then tired out so this week she was only allowed every other feed by bottle (the other by feeding tube).  Well, that wasn't ok with her!  If you get your hand or her cannula or her blanket, or or or...anything too close she tries to eat it!  She's very eager, but takes too much and usually brady's (low heart rate).  She's really good at self recovering, but it takes a lot of energy out.  She has been able to wean her oxygen flow to 1 liter and about 23-25%.  Brennan didn't have as much lung problems and Brooklyn didn't have as much bowel problems as the others.  It's showing, and their excelling, but have homework!  She's getting there! 
Well, there you have it!  Their 16 week update, only 1 day late!  AND I've slept well this week!  Hailey is doing really well too, she loves going to day care and playing with her best friend Ella.  We are so thankful to so many for helping Hailey find some rest and stability in this chaotic couple months!  She is doing well, much in part to you all for your help!  She can't wait for the babies to come home too - even knows where Brooklyn's going to sit in our van!  Right next to her of course! :)  Can't wait til we have a houseful of babies, but we are enjoying our last days as a three-some.   

God has been so good to us and we are blessed with such amazing support and a terrific family!

Thursday, January 14, 2010

Getting Shunted...update

Another update - Landon did really well!  He is extubated (took an extra 1.5 hours) but he's only on nasal cannula and on 35% oxygen.  We're so proud of him!  They removed his resevoir and placed his shunt on the other side.  The Dr said he has a lot of tubing coiled in his belly so hopefully will not need many shunt revisions as he grows.  Praise God for a successful surgery!  His head already looks smaller and he looks great!  :)
Update - Landon's surgery is rescheduled for 11am Thursday morning as the first case ended up being over 10 hours!  They gave him Tylenol tonight to help with his pain and it seemed to at least take the edge off.  I'll update tomorrow - it should take about 2 hours.  Thank you so much for your prayers and encouragement!
Landon's Hydrocephalus has been getting worse the last couple weeks, especially the last 3 days or so.  He has not been tapped (drawing 5cc of cerebral spinal fluid off his head through the resevoir) for about 3 weeks and his head circumfrance has been growing.  He was doing ok, draining the fluid correctly, then the fluid started building up and his ventricles were enlarging, causing his head to enlarge.  Thankfully this is happening while his skull is still forming and he has room to grow and not have as much pressure.  The last couple days he has been really irritable, unable to be easily calmed and arching his back a lot more.  He just looks plain uncomfortable, and I feel so bad for him!  When he sneezes, he cries right after, like he's got a pressure headache.  He probably does!  Well, he had a cranial ultrasound Monday (as usual, every Monday) and it showed, yet again his ventricles had enlarged and Neurosurgery saw how he was acting and decided this was the right time for the Ventriculoperitoneal shunt.  We waited until around 11pm to sign consent for the surgery and find out what time he actualy will go back.  He was supposed to be first case (around 7:30am), but an emergency case bumped his.  That's ok with me!  If  I was in that situation, I'd want someone more critical to be in line first.  It's good news that Landon wasn't critical.  His surgery will be at 3:30pm now.  So, I'll update after surgery!  Thanks for all your continued prayers!

Wednesday, January 13, 2010

15 weeks

Our babies are 15 weeks old and 38 weeks gestation!  They're growing so much each day!  This week they all had repeat eye exams with great results!  The ROP laser eye surgery was a success for everyone!  Also, exciting news - we took and passed our CPR class!  One more step to coming home!  I hope we never have to use it, but at least we know what to do.  Without further adeu... :) 

Brennan Nicholas 5lbs 4oz (birth weight 1lb 4oz)

Brennan has done really good eating and breathing!  It's kinda the same old same old.  Working on eating and breathing.  We've been able to do so much more - we do a lot of their assessments (take their temperature, change diaper and oxygen saturation probe), feeds, diaper changes and baths.  It's really fun to start to see their personalities come out more and more.  He is the most relaxed, and getting so expressive!  He's the only one that hasn't sucked on his finger or hand.  It's so cute to watch him look more like a newborn - they change so much in even a few days.  He just needs to keep working on his feeds and breathing to come, he's doing really great!!ll!     

Landon James 6lbs 2oz (birth weight 1lb 7oz)
Landon is getting so big!  He has done a great job with breathing and has started to take some of his feed by bottle now.  They continue to watch Landon's ventricles and how much fluid is building up.  Although they are not sure if he needs a shunt, but most likely he will have to have it.  He will continue to have cranial ultrasounds to monitor the fluid, until they make a decision. 

Happy Brooklyn!

Sad Brooklyn!
Brooklyn seems to being doing better over the past few days.  She was doing amazing but over the last couple days she has began to "poop out" a little.  Over the next couple days they will begin to lower her oxygen to 1.5 liters!  She is also still doing really well on her feeds.   It's amazing to see her personality and how much she reminds of me of her big sister vibrant, cheerful and energetic!  This girl does not want to miss a thing.  We found a toy for her to watch to keep her busy otherwise she will stare at you the whole time!

Monday, January 11, 2010

Holding three babies video! :)

15 week update coming soon, but I'm so excited to share this video!  Saturday I got to hold all three babies at the same time!  It was amazing!  Brennan was smiling (left), Landon is trying to poop (his face gets bright red!) (center) and Brooklyn is wide awake going to town on her pacifier (right).  :)  I LOVE our babies!!  I could watch this over and over again!

Sorry all you non Facebookers!  I added this video because I thought I had figured it out!  The video is too big to upload to my blog so I was hoping to just link it.  If any of you know how to share a 155MB video, let me know!  :)  For now, here are pictures!

 They look so alike, but we can definitely tell them apart.

Happy Mama!

Pacifier time!  They're actually getting good at holding them in on their own!  Less work for us :)

Friday, January 8, 2010

14 weeks and Happy New Year!

Happy 14 weeks and 100 days old!  (Well that was when I started this on New Years Day!)  Makes it a lot easier to keep track of now!  This will probably be a quick update - with the holidays and being back and forth between home, work and Ann Arbor it's been so hard to keep this updated!  I'm sure you all understand, but I was really really trying to get this posted sooner!  New Years resolution - to update my blog better!  I want to have these memories to share with the babies as they grow up and can only remember them if I do it right away!  Oh well, here is the 14 week update and 15 weeks to come soon!  The only thing similar that happened this week is all three of them failed their newborn hearing test.  This is only measured at a decibel (whisper) so the docs are surprised and have ordered a more comprehensive test in 4 weeks.  I know they're not deaf, they turn toward us when we talk.  Just another hurdle.  Please pray!

Here's Brooklyn's most recent footprint compared to her birth footprint!  Can't believe how much they've grown in 14 weeks!  They are doing so good!

Brennan 4lbs 6 oz (birth weight 1lb 4oz)

Brennan had to go back on nasal cannula this week after making it 3 days without any assistance.  He was just too tired and unable to eat good.  He's taking bottles every other feed (the others through the feeding tube) and doing a pretty good job finishing.  Not too much growing wise for him, just staying steady!  The doctors "round" on all the babies every morning so check in, see how they're doing and make any changes.  Rounds on our babies now only take about 30 seconds!  We love it!  They're just growing now!

Landon 5lbs 11oz

He just gets huger and huger!  (That's HUGE - er!)  As you can see, he's gaining weight very nicely! :)  Overall he's doing great - taking between 10-20cc of a bottle (in only a few gulps - literally!  He take sabout 5cc per suck then has to guzzle it down) and on 40% oxygen on his nasal cannula.  It's so exciting watching him do this well!  His had his cranial ultrasound (every Monday) and his ventricles a little bigger.  The docs are waiting until Monday to see about shunt (even though I'm posting this so late, we still don't know!).  Landon is definitely a Mamma's boy!  I've held him so much and he just calms right down and goes to sleep.  I love it! :)   

Brooklyn 4lbs 6oz (birth weight 1lb 3.5oz)

The exciting news about Brooklyn is she's taken all her bottles on Thursday (New Years Eve)!  That's a HUGE step toward coming home!!  She woke up before each feed, was eager and took every bottle!  They started them out taking 1 bottle a shift (twice a day), then moved up to every other feed, then two feeds and 1 feeding tube rotation, and now she can take a bottle whenever she shows cues!  She hasn't been doing the best at gaining weight so they increased her feeding to 28 calories fortified, like Brennan.  About half is breastmilk so it's lasting so much longer!  5 of my bottles (what I get when I wake up in the morning!) feeds them for 24 hours because of adding formula.  Crazy!  She's doing well, same old Brooklyn along with the craving for bottle feeds!  We're so excited for her!

Thanks to Munn, we went to see a Piston's game on New Years Eve!  One of our last real getaways for awhile!  We went along with Nich's friend from childhood and his girlfriend and Munn.  His friend's sister watched Hailey for the day and had so much fun!  Pic to come in the morning of Nich & I infront of the Piston's shoe!

15 week update coming soon!