What "OK" looks like in NICU

I get so many questions about Big D.  How is he? What's going on with him? And often, my response it "he's ok".  Mostly that is because, if I go into all the details of what is going on - it's a 20 minute conversation and honestly - who has time for that?! I don't even have time to update everyone for 20 minutes.  So, I respond "He's ok".  I wanted to give a look into what "ok" means for a NICU baby.

D is now 30 weeks gestational age.  He has been here with us for 5 weeks now.  He is now 1520 grams.  A "big" 5 week-old/30 week gestational age.  D is doing well because most babies around us are having surgery or have brain bleeds.  They have NEC (inflammation to their intestines - often resulting in surgery to remove the inflamed portion of the intestines), slowed developmental growth due to the brain bleeds, and heart problems.  I see a new baby going into surgery on a weekly basis.  D is doing well.

He is "ok".  Last week D's heart started having arrhythmia's.  There were couplings - and with that came the monitors going off constantly because it would miss the 2nd beat and say he was brady-ing.  Brady-ing is when the heart rate drops.  He has also been diagnosed with PDA (flap in heart that should be closed but isn't yet... it can close on it's own or will need surgery/meds to close it).  Due to both of these, we stopped his caffeine dose and started him on meds to help slow down his heart.  When we stopped the caffeine, we increased his risk of brady's and apneas.  We started caffeine so he wouldn't fall into a very deep sleep and forget to breath.  Now that the caffeine is stopped - we are already seeing more bradys.  But we can't start the caffeine again because it'll mess with his heart too much.  He was also put back on the CPAP (breathing machine that helps him breath) - because he didn't handle the HighFlow machine (it's less help than CPAP) well and his lung collapsed last week.  So we put him back on CPAP and to help his lung expand again, it was at a pressure of 7 (pretty high!).  The pressure pushes air into his belly which causes him to have "cpap belly" or a very large, swollen belly.  His belly is large now so he doesn't tolerate feeds well at times.  Less food is better but we can't give him less or he'll start losing weight and we need him to gain weight so he can keep developing - it's also important so if we need to do heart surgery - he is a bit bigger.  But the food is causing his belly to get fuller which then causes him to brady.    And we can't slow down the CPAP because his lung is still collapsed and we need to open that.

So the lack of caffeine is causing him to brady - which puts stress on the heart - but we can't start it again because it'll mess with his arrhythmias.
We can't slow down CPAP because his lung is flat and we need to open the lung.  This is causing a big belly which causes bradys and puts him in danger for NEC.
We can't slow down the amount of food because he needs to eat to grow so he can be better equipped to handle surgery and to be able to breath on his own.  But the food is causing bradying as well.

So it's a fine balance.  My analogy for where we are right now is: We are on a train, going at high speed.  We see the track ends and there will be a wreck but we can't get off and we can't slow down.  No matter what we decide to do, there are negative side-effects.  We must pick a poison and pray it's the least deadly one.

This all is very overwhelming to me.  There are so many moving pieces.  So when people ask: "He's ok" because he is doing better than most micro-premies... though he still has his scary struggles to get through and he is on the brink of falling into a major disaster - be in heart surgery or getting NEC or bradying and having to be intubated.

God is good.  God has truly gotten us through to this point and I believe He will continue to bless us.  This is the peace I find on hard days.  God is here and He's holding D and myself and Ash and everyone who has been so sweet to help us.  I'm giving it to Him.  To HIM be the glory of what great things has been and will be done through and for Big D.  That said - I am still scared to no end and still hold my breath and get tears in my eyes every time D brady's and we have people running to his bed to "wake him up" or "get him to breath again".

D is "ok" :-) But we are watching 100 moving pieces to see which one will drop first....

Choose... but choose wisely

Yesterday the nurses started noticing some arrhythmias showing up on D's monitor.  They watched it all afternoon while I was at home with the kids.  Then, when I got back around 9 pm, - I started visibly noticing the changes in his heart beat as well.  I stayed until 1:30 am - wanting to make sure he was "good" before I went home to grab a couple of hours of sleep.  

I got home - excited for my bed, for sleep, for release from the stress of the day. 

I walked into my room to find this adorable, blond-haired boy sitting in my bed.  When  I started cuddling with him (he has been extremely clingy in the last week or two) - I noticed he was hot.  Sure enough, low-grade fever.  Gave him some meds and started rushing him to bed.  After all, I was exhausted and HAD to get some sleep.  

We take Cy to his room and smell and stink.  Lu had spoiled her diapers and of course taken her diaper off and left us some beautiful artwork.  I stood and laughed.  And laughed.  And laughed.  Um.. my very very tired husband - well, he was NOT laughing and actually was perturbed that I was laughing so much.  Naturally, the kids joined in and we were all laughing... though I don't think they realized that mommy was laughing to keep her cool and sanity.  But whatev! Laugh along kids... laugh along.  For now.  ;-) 

I came to the hospital today and told them of Cy's small fever (he woke up fever-free) and they are now not letting me hold Darius for 12+ hours to make sure I'm ok.  If I go home, I cannot come back - if I am exposed to fever or have symptoms, I have to be away from sickness/symptoms/fever for 24 hours before coming back to NICU.  With Darius' heart in question, I cannot risk getting sick and not being there fi he needs to procedure.  

Choose.  Which child will you care for today? Choose wisely.  Who needs you more? Who notices your presence more? How will the other feel if you neglect their needs? Choose a child.  NO mother should have to choose which child to care for.  It is the most unnatural, painful feeling.  I often wondered: "How will I love this baby who is being formed in my womb as much as I love this living child?! Do I have enough love? I don't think I could ever love more than I love my 1st born"... NOPE! I love them each and every one - equally.  I love them with every fiber of my being.  I love them enough that I would literally give ANYTHING for them - even my life.  HOW, then, am I to choose which child to sit bedside to? 

Choose.  Didn't God have to choose too? Didn't He choose to let His Son be crucified, so that His other "children" could be saved? I now understand even more what God felt on that day - when he watched, as His first born suffered.  Oh the sacrifices God made for you and I.  What He gave, what He felt, the anguish, the helplessness, the UNNATURALNESS. 

I am now hospital stuck.  I cannot go home until Cy is better - and that is breaking me! Literally breaking me.  I just spoke to cardiologist for D and an EKG was just done.  Now it's a waiting game to see how he is doing.  It's a waiting game to see when I can come home.  So I am waiting. 

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. - Isaiah 40:31 

Also, a huge thank you to my mom for staying with Cy today - if i would want ANYONE to be with him - it's my mom.  She always babied us sooo well when we were sick.  I'm sure he is home being babied even more than my NICU baby is ;-) 

Emotional Roller Coaster

Sitting here with D.  3:20 pm - been here since 9 am.  About to leave and run to spend time with my two oldest kids until 8 pm when I will head back up here for the rest of the night.

He was doing so well yesterday.  We put him back on high-flow (the oxygen that goes over his ears - small, less pressure, HUGE step!).  This morning, we put him back on CPAP (head gear, more pressure to help him breath) because he was working too hard.  A chest xray was called for and found that one of his lungs has collapsed due to the high-flow.  So we are now doing Physical Therapy (consists of them taking a very soft object and hitting him repeatedly on sides, back, and chest).  He enjoyed it.  Mommy - not so much.  At times it seems to be too much.  I want to scream "DON'T TOUCH HIM ANYMORE! LET HIM SLEEP! HE DOESN'T NEED THAT RIGHT NOW!" I feel violated.  I don't get to enjoy my baby like a new mom should.  I don't want him to get pricked and messed with every 3 hours.  I watch him brady and apnea and his heart rate drop drastically.  I watch as we try to get him to "wake up" and breath.  I watch us take 2 steps forward - 1 step back.  I watch new nurses come in every day or 2 and try to "get to know" my son.  My individual, unique son.

Emotional Roller Coaster.

Then let's add the NICU room.  5 other babies.  People in and out - bringing in potentially deadly germs.  5 babies who take turns crying.  5 babies who need attention and tending to.  5 sets of machines beeping non-stop.  5 babies that you get to know - you know who cries the most, you know their struggles throughout the day, you see the procedures.  You know their names.  When something goes wrong - when people rush in to help - when procedures are done that have them screaming in extreme pain - YOU FEEL IT... because, well, you "know" them.  The babies with no mommy or family beside their bed day in and day out - you feel for those the most.

Emotional Roller Coaster.

I am so thankful D is doing so well - he really really is.  He's ahead of so many other 30 weekers.  For that, I praise and thank GOD - for it is through HIM that D is so strong and that Ash and I have remained strong as well.  But that doesn't take away the struggles.  The pain.  The frustrations.  The noises.  The sadness.  The longing for your baby to just be back in your belly - safe, warm, and not having to work SOO hard.  It's a daily emotional roller coaster with high anxiety - because at any moment, they can come in and say "D's lung has collapsed, here's what we need to do...."

For Such a Time as This

Esther 4:14, Mordecai tells Esther that she was placed in her situation for "such a time as this".  Wayne Watson sang a song, the lyrics keep going through my mind this week: 

I was placed upon the earth
To hear the voice of God
And do His will, whatever it is
For now and all the days He gives
I am here, I am here and I am His
For such a time as this

Through this journey with Darius - I have been shown time and time again that this trial, while hard and sometimes near unbearable, is to bring God glory.  Is to bring me to rooms, in contact with people, and in situations that I can pray and share my faith to others.  For such a time as this - I am here to do HIS will.  

Many are asking for updates and while I could update on FB - I think updating here would be better and I can give more detail here.  I never knew how HARD bed rest or NICU was for moms.  Never.  I never even had an idea.  I could "guess" and try to empathize.  Now that I am in the midst of this - I see that I had NO idea what moms, kids, and families went through with bed rest and NICU.  I pray that my blog will also help those who have never been in either of these situations to be able to understand more, to be able to empathize more.  So I will try and be honest and open - NOT for anyone to "feel sorry for me" or feel like they need to do something.  But because I have felt led to share my story for others to understand this journey.  

Ok so for a quick update:
Darius is doing well.  He has lost 40-50 grams today alone because of the fact that he isn't eating :-/ He is now below his birth weight.  That hit hard since it took us 17 days to get his birth weight back.  But it's for the best so we'll take it at stride.  We are stopping feeds to give his belly a rest from the CPAP air. Other than that - he is doing great.  There are so many babies born at 25.6 weeks have more serious problems.  I am so thankful to God that He has helped Darius and given Ashkan and I strength for this.

More to come when it's not 2 am and I am falling asleep :-) 

I thank God for this mess, for the peas on the floor...

It was late.  2 hours of putting my 3 year old to bed.  Past 8 pm and having been at work that morning at 6 am, working, then coming up to tend to the kids for the rest of the day.  I was tired.  Worn out.  Ready to throw in the towel and rest.  Wait! I'm a mom.  I cannot clock out as soon as my children do, I now have a house to tend to.  I look around - survey the damage - hold back the tears - take a deep breath.  Dishes (at least 2 loads to be washed... by hand), 4 loads of laundry to fold and 2 to rotate through the washer and dryer, floor that needs swept/mopped, bathroom to pick up after the bedtime hurricane, dinner to put away.  Yep, I had a lot to do.

Dishes - Thank you Lord for giving us dishes to wash, dishes that we can eat off of.  Dishes that I can serve my children from.  Food that dirtied these dishes.  Clean water that filled these cups.  So many dishes - thank you for the 2 days of food that filled our bellies and for the reminder that we have not gone without.

Laundry - Thank you Lord for the HEAP of laundry on my couch that I have the ability to sit on (though, most of the time, my laundry puts it to good use... and I let it...).  Thank you for my children who are growing and needing new clothes.  Thank you for the small stains on some of my favorite clothes that did not come out, despite soaking them in whatever  spray I have in there, for they are reminders of the fun we had while making cookies, or the awesome birthday party we had just the week before.  Thank you Lord for a washer and dryer that work and allow me to give my children clean clothes with minimum work each and every day.

Floor - Thank you Lord for giving my precious baby girl hands to throw her food on the floor and a mouth that can get 20% of the food in her mouth.  Thank you for the extra food that could land on the floor, while my kiddos still got plenty to eat.  Thank you for the milk that splattered all over the floor - what seemed to have gotten in EVERY area of the kitchen, dining room, and hallway - my kids have milk to drink, thank you.  Thank you for the yogurt that filled in the gaps where the milk failed to reach - it's a staple food item here and one that we have never had to go without.

Bathroom - Thank you Lord for the pee-soaked floor around the toilet, for it shows me that my son is growing up and able to pee on his own... albeit, I think I may need to supervise I bit more.  Thank you for the wet towels, wet floor, and wet me.  My kids had a warm bath and tons of fun playing together in a bathtub.

For those nights when I need to take a VERY deep breath before surveying the damage of the day.  For the nights when I fight with all I have to not break down a cry of exhaustion when I see that so much still needs to be done.  It helps to see how much I truly have in life.  It helps put things into perspective and to see that silver-lining, no matter how small it may be on that particular day.  Whether you believe it God or not, I give all my thanks to my God, you can still be thankful for the amazing life you have and the wonderful blessings you have.  I am blessed.  It doesn't make all my days easier.  It doesn't make me any less tired or want any less help or need any less encouragement.  But it does get me through some of those harder days.  Thank you Lord, for Your gentle reminders.

Cy is 3!!!

Yes, I did just post about Lulu turning 1.  And now it's Cy's turn.  WHAT was I THINKING when getting pregnant around the same time with both kids?! It has been a crazy crazy month with both of their birthdays back to back.  I am seriously rethinking a lot of things for next year because 3 parties in 2 weeks just doesn't work all that well.

My big boy is 3!  3 comes with a lot of attitude already, I can tell.
He is the most fun-loving, rambunctious, hard-headed, stubborn, sweet, sensitive boy! I love my sweet Cy to pieces and with each day, I am more and more excited of what he can do! I love having a 3 year old - it's so fun to run around with him, to teach him things, listen to him count to 15, sing songs, read books, and watch him play by himself and have an imagination.

Happy birthday big boy! You are the light of my life and I love you more than you will ever ever know.  If you want to simmer down and listen a bit more this coming year - I would LOVE that ;-) If not, be who you are! Mommy and Daddy love you for who YOU are and we are so excited to see all that God has in store of you and that passion of yours!

Lulu is 1!!!!

Sweet Lulu Bear turned 1 just a few days ago.  WOW! I cannot believe she is already one.  It seemed like yesterday, I was rushing into the hospital to have her just a short 6 or 7 hours later.  She sure has taught me soooo much! I thought I would give a running list of things my 2nd child has taught me over the course of a year:

1. You tend to baby the 2nd one a bit more, I don't know if it's because she's a girl (probably) or because this time around, I really cherish the time a lot more.  I also thank sweet baby Jayden for teaching me this.  Not a day goes by that I do not look at his picture on my fridge and thank him for teaching me the importance of appreciation.

2. The little things do NOT matter as much as they did the first time.  At Cy's birthday party - I had to be the one to hold him, show him everything, be with him.  Lulu's birthday party - yep, everyone else had her.  It's a different world with 2.  I don't have time to hold her all the time (though, I'm sure many would say I hold her too much... I beg to differ - I wish I could hold her MORE).  I remember obsessing about nap times with Cy.  OMG, it's time to go from 2 naps to 1 nap.  My mom: "Sariah, it's FINE, Cy will get it - you don't have to time his naps"... um, YES I DO, He might DIE if I don't" ;-) Now: Oh, she wants 2 naps... ok... thank goodness for the break.  HA! See? Little things like writing down each time I nursed, counting how many dirty diapers the baby had in 24 hours, watching to make sure EVERY single food group was fed to them each day, covering the floors with blankets so they wouldn't get cold while crawling... yep, they just don't matter as much as they did with my first.

3. The little things annoy me SO much more than they did the first time.  :-) Splashing in the tub.  I would let Cy splash to his little heart's desire.  Now that there's 2... um, you get a splashing war going and it's done.  Your bathroom will be spotless and you will not need a shower at the end of the day.  Eating with your fingers - so cute.  Until you have 2 and they mimic each other.  Oh dear - no!!! 4 hands to clean is just too much.

4. Every single child is different and unique.  Lulu has taught me that above all else. This year has probably been the hardest year of my life so far.  With reflux, sensitive sleeper, fussy all the time, and very needy - she's given me a run for my money.  It's been hard but it's taught me that what worked with Cy - does not work with her.  Great, now I have TWO kids to figure out.  Seriously - WHERE are those owner manuals for each kid????? Anyone writing one for my kids yet? I'll pay you serious cash if so!

5. Sleep is overrated and will never come again.  With Lulu still up every 3-4 hours (now it's teething - yikes) - I have come to terms with the fact that I will never again get a straight 5 hours of sleep a night... let alone 8 hours.

6. Through it all, your love for your child grows with each day that passes.  Milestones are still so important.  The term "my heart is melting" never made more sense than it did as I stood above my children, watching them kiss each other.  WOW.  The love, the affection.  Each day - it grows.  I love my sweet baby girl!

This journey that I am on as a mother.  It's soooo hard.  It's exhausting.  There is a lack of appreciation, a lack of sleep, a lack of acknowledgement.  But there is an abundance of love, overflowing sense of pride, and bubbling over joy that comes from my children.  I am learning more and more every day.  While that scares me, because I'm becoming my mom (YIKES!) and never thought I'd "understand" moms because they were all so psycho and crazy and had annoying, loud, dirty kids.... I do.  I get it now and I am so thankful that I do.  :-) **For those youngsters reading this, I know what you are thinking... and I can't wait to hear from you in 15 years to tell me that I, just as my mother is now, was RIGHT!

Lulu, I love you sweet angel.  You are amazing and wonderful and your personality just gets me every time! Happy 1st birthday sweet baby!