HUGE Update!! 6/17

JAKE 6/17

Lil Jake is OFF CPAP...as of 12:15 pm today.  I was hesitant to take him off already, he's still so small.  But they reassured me that if he showed signs of getting to tired they would put him back on.  But he is doing great so far.  Way to go JAKE!!

Both boys have officially hit 3 pounds!!!
We are now 31 Weeks and 2 days!!
Days in the NICU = 37 days (1 month 7 days)

8 pm Weighs on 6/16
NIK  -  1410 grams (gain of 40 grams)
JAKE  -  1420 grams (gain of 30 grams)

6/15 3 pounds!

Both NIK and JAKE have offically hit 3 Pounds!!!


YEA!!!!  You have both hit 3 pounds.   Huge Day!!  Now the work of growing is in full swing.  Keep up the good work.  I'm so proud of you both!


It seems like the boys are familiar with being held and now they are starting to crave it.  They settle in quickly now and fall fast asleep.  They have both really been liking it.  Almost as much as I do

6/15 Wed
8:00 pm Weights
NIK  -  1370 (gain of 40 grams) = 3 pounds
JAKE  -  1390 (gain of 30 grams

Good Job My Beautiful Boys!!

31 Weeks Today 6/15

NIK and JAKE are 31 weeks gestational age today!!  Huge milestone for us!

Last night at the big weigh-in JAKE hit 3 pounds!!!  Wow, Can't believe he's grown so big.

Lil NIK is not to far behind...Only 30 grams more to go till he hits his 3 lb mark!!  Grow, boy, grow!

It was sooo nice to hold NIK.. I haven't been able to hold him for a while...  We, were both loving it!!

I was able to hold Jake today!!!  He loved it almost as much as I did!!  He kept rubbing me with his tiny hand...like he was the one comforting me!  He's such a strong little guy!



Both boys had their eye exams yesterday.  They told me not to come for them...they are hard to watch.  But I was there!!  I decided if they had to go through it...then so did I.  The least I could do was to be there for them when they needed me.  They both did great!  The Dr. said their eyes look just as they should at this point.  Both have undeveloped vascularization in both eyes.  They have not fully developed their eye vessels yet.  Neither of the boys had any signs of ROP (Retinopathy of Prematurity) which is the leading cause of childhood blindness...Super Great News!!!  The Dr. will come for another eye exam in 2 weeks to make sure their eyes are continuing to develop.  Great News!

The past day or two they boys seem to be getting a little stronger each day.  They still only make little squeaking sounds in protest...but it won't be long till we hear a full cry.

6/14
8 pm Weights
NIK  -  1330 grams (gain of 10 grams)
JAKE  -  1360 grams = 3 pounds (gain of 20 grams)

6/10 - 1 Month Birthday!!

To my Beautiful Boys!!

Happy 1 Month Birthday!!

NIK

Nik turned 1 MONTH today!!  He has done super the past 2 days on his CPAP check.  Although after we took his pics he had a brady and desat.  But recovered ok.  They weaned him down to a CPAP setting of 4 earlier during the day...he's doing great with it.  He also is doing well with his highly fortified feedings.  Nik did receive a bloody nose this morning during examination.  Hopefully it will resolve it's self and not be an issue.



JAKE 6/10

Jake is 1 MONTH today!!  He is also doing great the past couple days on his CPAP check as well.  He was just bumped up to a 27 cal diet as well.  He's still doing great with his feedings....and the fortification has not slowed down his pooping one bit!!!  He IS his father's son!

 Nik 6/10 

Pic of NIK...he always looks like he has a story he wants to tell!!! 


I'm so proud of the boys.  They are so strong and are little fighters.  I see them getting a little stronger every day.  I long for the day when I can give them a bath and kiss their tiny toes.


Weight Gains on 6/10
NIK - 1230 grams (30 gram gain)   YEA!!
JAKE - 1280 grams (50 gram gain)  YEA!!

??

I've been at the hospital all night.  Our boys are doing great today.  They have both done great with their cpap check.  Both had weight gains as well.

The night in the NICU was one that no mother should ever see.  I have images in my heart and mind that I will never forget the rest of my life.  My mother in law said that the NICU is a place that is filled with angels watching over the little babies....but tonight I just don't know about that now.  I do feel grateful for the health our boys have had.  But, I just don't understand why these little ones, so Innocent and beautiful, have to endure all the pain and suffering they do.  All the babies in the NICU try so hard, and battle with all they have...and to many of them don't win.

I just pray my boys keep fighting.

30 weeks!!

NIK 6/8

Nik has hit 30 WEEKS!!

He has been doing pretty well today.  He has had a bunch of up and downs with his stats.  More than they would generally like to see right now.  But during his CPAP check at 8pm he totally rocked it!!  He did a great job to every ones surprise.  They are usually ready for all kinds of reviving techniques.  But he did fantastic.  I think it was because he knew I was going to take his pic for his 30 week special day!

Nik had his blood work done today.  His Hematocrit level (red blood count) was on the low side, but with in the bottom few number of what they consider acceptably normal at this point.  He also had his Retic level (new red blood cell count) checked.  His was lower than Jakes but does show he is trying to produce his own little red blood cells...but just not to quickly.  At this point they will not give Nik another blood transfusion.  But will watch his oxygen stat closely to see if he becomes symptomatic and warrants another blood transfusion in the next couple days.

Nik's growth panel came back...he is already on the 27 calorie per ounce fortification feedings.  He was put on this amount 1 1/2 days ago.  He seems to be doing well with it..although it does slow things down a bit on the way out.  But last night he did gain weight!!! Yea, better than a loss.

Jake 6/8

Jake has hit  30 WEEKS!!!

He had a rough day on his 30 week day!  Poor baby.  Just couldn't keep the breathing thing going.  He totally crashed during his CPAP check, which it totally unlike him.  Took a bit of time to get him to come back around.  Scary for me.  But he's a little fighter...and tomorrows a new day!!

He had his blood work done.  His hematocrit levels (red blood count) was lower than what they consider normal.  (I was expecting this...he's been pale and his oxygen level hasn't been as stable.)  But his Retic level (newly produced red blood cell count) was actually higher than they expected.  This means he is trying to produce his own little red blood cells...which is great!!  But they don't carry oxygen well yet, and they may not sustain him...therefore, I'm watching really close for any symptoms or signs of respiratory distress to indicate he needs his blood transfusion.  I would rather he receive extra blood...just so his tiny body doesn't have to work so hard.

His growth panel came back as well.  Not as much gain and growth as they would like to see...so they may increase his fortification and calorie intake per ounce to assist him.  I would also like to see that happen...sooner would be better than later.

I'm looking forward to when both my tiny boys can put together a few good days in a row with some consistent weight gain....even if it's just a few grams each night.

6/7

There is another family, or couple, that we have met a few weeks ago.  They have triplets that were born a few weeks earlier than our boys...so they have been here about 3 weeks longer than us. They have 2 girls and 1 boy that were born at 24 weeks gestation and have had a rough time so far.  The 2 girls both had pretty large brain bleeds and it was thought they would need a cranial shunt to drain excess fluid putting excess pressure on the brain.  All 3 of them have had a very hard time breathing, as all preemies do.  Then just a couple nights ago one of the little girls coded and quit breathing and her heart stopped.  they performed cpr on her for a little over 10 min.  and gave her 3 shots of epinephrine.  Finally she came back but could only hang on for a few hours...then she passed away.  I can't imagine their pain.

Apparently she had an infection that had been raging through her tiny body and eventually won.  Now just yesterday their boys condition has worsened.  He is now on an oscillator type breathing machine and also has developed an infection.  Possibly NEC.  Hopefully they have caught it early and it will respond to treatment. 

I laid awake the past 2 nights just thinking about them and our boys and all the possibilities, similarities, and differences.  Their babies are now 34 weeks, 4 weeks older than our boys, and still...by far not out of the woods....they are deep in the thick of it.  Their babies will have severe disabilities throughout life and will need lifelong extensive care.  Made me realize that the effects of a premature birth sometimes don't end when you leave the NICU.

It really humbles me to see them and think of their situation.  The two situations they are in are my worst nightmare.  It hits closer to home when I see it all unfold right across the room, and realize those babies are 3-4 weeks older than ours.  It's a sharp stick of reality of life in the NICU.  Everyone talks of only the positive...because they're all deathly afraid of what tomorrow can bring, praying it never will.

On the bright side our boys do not have their PICC lines in or and IVs with direct access to their blood stream.  But we still have the risk of infection in the backs of our minds....and a lot of time left in the NICU.

I apologise to my family for not being able to focus on anything back at home right now.

8 pm Weights

NIK - 1150 grams (lost 20 grams)
Jake - 1210 grams (gained 10 grams)

6/6

Holding my Jakers!

I was able to hold Jake at 9:30pm last night.  He was great!!  His stats were super solid and he fell fast alseep with me.  I loved it...and it appeared so did he!  The highlight of my day or days, is when I get to hold them.  It really makes me happy and it's a small amount of time that neither of us have a care in the world...we're just enjoying being together!

At the 8pm weigh-in...

Nik gained 40 grams!!!
Jake gained  40 grams!!!

Awesome Boys!!

6/4 - 6/6

As of Saturday night Nik gained a solid ounce!  And Jake gained 1 1/3 ounces!!  Wow!!  But then on Sunday night Nik had gained only 10 grams.  And Jake had lost 20 grams.  What?? 

Both boys have been started on iron supplements, and are doing well with them so far.  They are doing great with filling their diapers up.  I know this sounds weird, but with every super stinky diaper we are taking a huge sigh of relief that everything is working well in that department.  The opposite is totally unthinkable...so we just don't!

The boys cpap check went well on Sunday night.  Jake totally rocked his CPAP with out any oxygen or anything..he did great.  Nik needed both oxygen and constant cpap during his but never totally crashed.  Both little guys are super cute and their hair looks really silky tonight.

I was able to hold Nik today (Monday) while they changed out his isolette.  He now has a totally clean little room...for now.  It was so nice to hold him.  His little squeaks and movements made me really happy.  He did pretty good with it until the end.  My good friend Kelly has been playing online scrabble with me for days, seems like such a small thing, but it's huge to me.  Thank you!

Now I'm off...back to see the boys for their 8:00pm CPAP change....and more pics of them.

OOPS, I DID IT AGAIN!!!

6/3  8:30pm

Hi, I'm Nik.  And I just pooped all over my bed!!!  LOL!!!

Shhhh, don't tell my nurse!!

Friday, 6/3

We had a better nurse today, although the day was kindof shaky in regards to they boys stats.  They both had to be on more oxygen to keep their levels up today.  I was kindof concerned, but figured they may be having a dip.  I would much rather see them progressing at this point...for obvious reasons.

I'm stressing about managing every ones time at home and who's going to watch the kids and when.  I'm trying to figure out when I can have the kids come up here to see the babies and spend some time together with them, as well as finding some relief for my mom, who is taking care of them right now.  I know she desperately wants to see the babies, but knows I need her in California to watch John, Anna and Ava.  For some reason I'm worried about it.

This evening our night nurse is one of my favorites!  She is really gentle with the boys.  Fie just came by to see the boys during their CPAP check/change with all their gear off.  She also brought them reinforcements....lots of milk!!  It'll help their little tummies so much.  She also brought me a couple books to read and some "skittles".  She's great.  I'm really happy she was able to come and see the boys with out all their gear.  They are usually very awake during the 8pm changing, which is a great time to see their little personalities and the very cute things they do. 

The boys are doing great tonight.  After today being shaky on their stats, I'm surprised at how great they are doing tonight.  They have been running on almost no extra oxygen at all...and not desaturating to much.  So, hopefully they are in for a well deserved long rest!!  I think the other nurse...who shall not be named....completely wore them OUT!  We will be trying not to have her again....actually, I'll be doing more than just trying.  I gotta take care of my boys!

Weights
NIK - 1090 grams (gain of 10 grams)
JAKE - 1140 grams (gain of 20 grams)

6/2 - New Nurse

Boys have a new nurse today...not sure if I like her yet or not.  She's old school...and a little rough.  But we'll see how the day goes.
.....
.....
.....
I have been here with they boys all day long.  I decided I definitely....DON'T like the nurse....for various reasons.  I try not to let personality cloud my judgement.  I actually liked her as a person.  But....I'm here to take care of my precious little boys....not to make friends.


This is the part I really really hate about the NICU experience.  It's stressful enough having 26 week babies in the NICU, but not having any confidence in the nurse that's supposed to be taking care of your babies is stressful, annoying, and exhausting.  It's going to give me an anxiety attack!!!!

5/31 to 6/1

Boys are doing well this morning.  Nik has been turned down to a 5 on his CPAP machine...HUGE step for him.  Not as much pressure to keeps his little lungs open.  Hopefully he will tolerate the change okay.  I actually was able to hold Nik today for a little bit.  He did great!  Actually, his saturation level was higher than he had all day.  I think he enjoyed it almost as much as I did.

NIK  (6/1)

Nik seems to be getting stronger everyday.  I can tell by how much he tries to help during diaper changes, and how much he protests during CPAP changes.  Thoes great big eyes get me every time!!!  I think he know it too!

JAKE (5/31)

Jake is cruzing right along.  He likes to try and poop on the nurses.  He actually peed all over his isolete...it was his way of telling them it was time to clean his room!!


Weights on 6/1
NIK  -  1060 grams
JAKE  -  1130 grams


(I stayed with you both most of the night...till about 1:30am)

5/28 to 5/30

Nik has been doing so much better over the past few days.  I could really tell a difference about 1 1/2 days after his blood transfusion.  He is able to keep his blood oxygen level up better and he looks much less pale.  And he is overall a bit more feisty!!  The Dr. and nurses say they haven't heard his PDA (heart murmur) in the past few days.  So, that's definitely helping him to get blood to his lungs.  If it will just stay closed we will be in good shape with that issue.  The Dr. also said they can reopen at any time for no reason at all.  But we are hoping it will stay closed. 


The Dr. has also put them on continuous feedings.  They have tried extending their feeding over longer & longer periods of time, but finally decided to put them on a daily amount calculated by their weight that continually goes in over a 24 hour period.  This keeps the boys from getting to full and spitting up...leading to desaturation...etc.


Jake is starting to look more pale.  We noticed him being more pale on Monday, 5/30.  But his O2 saturation level and heart rate are holding steady.  The paleness is most likely due to his red blood cell, or hematocrit levels dropping.  They are holding off on a blood test or likely hood of a transfusion until he becomes more symptomatic...like desaturating as his brother did a few days ago. 


Weights as of 5/30
NIK -  1050 grams  (birth weight 940)
JAKE - 1100 grams  (birth weight 1105)

Nik says..."Good Night" From the NICU!

Sat, 5/28

Who, Me?
I just pooped all over my nurse!!

Friday, May 27th

The Dr. did not hear Nik or Jakes PDA (heart murmur) today.  Hopefully it will close quickly on it's own.  Nik is on a more fluid restricted diet than Jake, due to his PDA being more symptomatic.  The boys both had a good day with hardly any desaturations all day.

At 8pm their weights are:
NIK - 1010 grams = 2.4 lbs (almost)
JAKE - 1040 grams = 2.5 lbs

We are happy to see they are finally growing... even if it's just a tiny bit...for now.

Then around 10pm Nik spit-up.  It went up his nose and caused him to stop breathing.  Of course his saturation level fell super low, he quit breathing, and his heart rate plummeted.  They took off all his CPAP gear and started to manually bag breath him for quite some time---seemed like forever.  His saturation level and heart rate were just not coming up at all.  They were doing everything they could to stimulate his heart and lungs to work, but he was just not responding.  He was dark blue and totally limp.  I found myself taking deep breaths trying to breath for him. 

After what seemed like an eternity he started coming back after being bagged with 100% oxygen.  After they got him re-stabilized the nurse told us that's about as bad as it will get.  If we could make it through witnessing that experience we'd be okay.  She apologized for us having to see it happen, which was nice of her.  But it was right after that the realization of what just happened hit me and just what a fragile and volatile situation we are really in.  At any moment he could be taken from us.  I try to stay strong and manage not get to emotional.  But at that moment I was flooded with fear, sadness and I don't know what all else.  I sat by his isolate all night long with tears running down my face.  Poor little guy shouldn't have to work this hard or go through so much.  I just can't do anything to help him except sit by his bed and watch each beat of his tiny heart and every breath.  Keep breathing my tiny baby!

I'm Getting a New Bed!!

Jake is getting his bed changed. 5/27/11

Hold Me Close Daddy!!

Jake Loves to be held by his Daddy!!  He'll snuggle right into and make little squeaking sounds.  LOVE IT!!

Thursday, May 26th

Gimmie All Your Blood!!

Nik received a blood transfusion today of 15 ml via IV in his right arm at 9:30 am.  Hopefully this will help his O2 levels stay up.  He has been desaturating and dropping his heart rate for the past 2 days.  He has also been super pale over the past couple days as well due to not having enough red blood cells to carry the oxygen.  In babies the bone marrow doesn't start producing red blood cells till in the 30 plus week gestation age.  So our babies, born at 26 weeks are unable to produce their own blood.  Therefore, needing blood transfusions a couple times over their stay in the NICU.  Hopefully this blood transfusion will help him have an easier time.  Jason and I will be by his bed all day.

Jake on the other hand is cruzing along okay.  His O2 sat level has usually remained in the high 90's.  Boys are feeding well and tolerating their feedings.  Great news!
NIK - 14 mls
JAKE - 21 mls

At 5:30pm Nik desatted & crashed.  He stopped breathing and his heart rate dropped super low.  Took a lot of stimulation and work to get him going again.  He's holding steady for now.  He has a blood test tomorrow morning to check his hematocrit level again.  If they are still down they will transfuse him again.  We'll see.  I just want him to keep breathing.

YEA!!! They Took My PICC Line Out Today!!

The boys are 28 Weeks Today!!

They took their PICC lines out today!!  They have raised the amount they're feeding the boys so they can receive the majority of their needs through their feeding tubes.  So, for now, No PICC lines or IV's.  That's a very good thing.

They are treading along with some good days and some not so good days.  They are having a few problems with keeping their oxygen blood saturation levels up, which goes hand in hand with them forgetting to breath.  (Minor Detail)  They tell us it's a normal preemie thing.  But you get a little worked up when your baby isn't breathing and the alarms are going off.  But, this will pass as the boys get older and their systems develop.

NIK has gained a little weight so now he is up to his birth weight of 2 lb 1 oz.  So we're glad to see him not loosing anymore.  Now if I could just sneak in some cheesecake from the Cheesecake Factory, and put it in his feeding tube, I know he would pack on the ounces then. 

We're headed up to the 8pm changing...more pics and info to follow.

Thank you to everyone for the messages and prayers.

LaShelle

It's a Good Day!!

Nik and his Mommy!  He loves to cuddle.

Jake and Mommy!  Cuddling really calms him!

Nik & Jake both received their head and brain ultrasounds early this morning.  We waited very impatiently for their results.  The Dr. finally brought us the results and they were both totally normal and looked just fine.  What a HUGE relief.  We were VERY nervous about them.

They are tolerating their feeding well.  They have started Jake on fortified breast milk last night.  He is up to 13 ml per feeding, every 3 hours.  Nik is up to 10 ml per feeding, every 3 hours.  Nik will start on the fortified breast milk in a couple days. 

Nik is still having oxygen saturation issues.  It's making me nervous.  But we have been assured that all is well and will work it's way out.

Weights

Nik - 950 grams = almost 2.2 lbs  (He is up 10 grams from his original birth weight....YEA!

Jake - 990 grams = 2.3 lbs (he gained 10 grams from the previous night.)

Both boys are off their Mt. Dew (TPN nutritional supplement given via central PICC line)  They have been weaned onto Sprite.  (still TPN but just a less concentrated version.)  I call the first one "MT. Dew" just because it's the same color. 

Thank you to everyone who has shown us such great support and thoughts.  We really appreciate everything and enjoy hearing from you all.

It was soooo good to see them this morning!!

Oh Daddy, Don't Change My Diaper!!

This is Jake.  He doesn't like his diaper changed much.  He is sporting a little diaper rash, so he doesn't enjoy them much.  Jason is becoming a pro at changing super tiny diapers and taking temperatures.  Though his expertise lies in grilling.  He's definitely on top of what's going on and what needs to be going on.  They see him coming and they are prepared to give up answers and all the babies stats for the day.

Keep up the good work Daddy!!

(Adrianne, the babies nurse is in pic also)

27 weeks Today!!

8pm weights

• Nik - 870 grams = 1.15 oz
• Feedings up to 5ml every 3 hrs
• Jake - 930 grams = 2.1 oz
• Feedings up to 7 ml every 3 hrs

Jakes billie levels are down & he's off the lights!!  No more sunglasses...for now.  Nik's levels have gone back up, but not enough to be on the lights yet.

The boys PICC (Pperipherally Inserted Central Catheter) lines were attempted today.  They are a long term catheter to deliver meds and fluids.  They insert a needle and thread a catheter up to the heart.  Jake's went in fine on the first try and placement was great...right next to the heart.  Nik's went in fine as well but kept threading up his neck instead of to the heart.  They tried re-threading 3 times with x-rays each time to check for placement.  But each time it kept going up the neck.  They decided after 1 1/2 hrs of trying that they would stop and try again tomorrow.  Poor baby just can't catch a break!!

Both boys breathing is great and their blood levels are all good!
Thanks for following the boys progress, and for your thoughts and prayers.

I Wear My Sunglasses At Night!!!

Monday 5/16

Jake is chillin' in his RayBans!
Dreamin' of the SoCal sunshine.  He's had enough of the Portland Rain!!

Both boys were put on the billie lights Sunday 5/15.  Nik was taken off after 1 day since his levels had come way down.  Jakes levels also came down, but he had some bruising from when he was born, so they are giving him another day on the lights.

I'm tempted to take a turn under the lights.  I could use a little sunshine!!



Tues 5/17/2011

Boys did fairly well last night.  Nik had only 1 apnea episode where he had to be helped to recover his breathing.  They are tolerating their feedings well with minimum spit up.  They have both developed a heart murmur, which they say is common for 26 weekers (which is not comforting as they intended).  Theirs have become louder in the past day...  But so far they are not overly concerned with the murmur at this point.  It is called a PDA, or Patent Ductus Arteriosus.  It's the most common heart problem in preemies.  Before birth, much of the baby's blood goes through a passageway (ductus arteriosus) from one blood vessel to another, bypassing the lungs, because the lungs are not in use yet.  This passageway should close soon after birth, so the blood can take the normal route from the heart to lungs and back.  If it doesn't close, blood doesn't flow correctly.  In some cases drugs treatment can help close the passageway.  If that doesn't work, surgery can also close it.  We are hoping they will both close on their own!!!  To help aid in the closing of the valve, they try to keep the babies on the less hydrated side, or slightly dehydrated. 

Other than that, the boys are doing quite well.  The Dr. said they are both doing better than she actually expected at this point.  Although, she is more concerned with Nik at this point.

Jason and I are grabbing a quick bite to eat and getting ready to pull an all-nighter!!  He's telling me to stop typing and eat my food.  (that sounds familiar...I'm usually telling the kids the same thing)

Thank you for your texts and prayers.

Niklas & Jakob

Niklas (Nik)

• born 5/13/2011  -  5:45 pm
• 2 lb 1 oz
• 13.5 inches

Jakob (Jake)

• born 5/13/2011  -  5:46 pm
• 2 lb 6.9 oz
• 14 inches

New Blog

We have created this blog to keep our family and friends updated on they boys progress in the NICU, as well as to document the boys progress.  Please feel free to check in often for an update.  Sometimes we don't have time to send out as many texts as we would like to, given we can't really text in the NICU.  But please know we greatlly appreciate all the prayers and text message you have all sent.  THANK YOU.

Jason & LaShelle