It all started with a Full Moon

Here it is - the birth story.  Cue lights.  Cue music.  Cue excitement. Ok, ok - maybe none of those are needed.  Because this story - this is one for the books.

My water broke on a Saturday.  I was 23 weeks pregnant and feeling miserable that day.  I am not one to run to the ER - at all! Ask my closest friends and family - even for labor - I wait until the last possible moment to go.  Um, the Co-Pay just is NOT worth the "false alarm" that I may get.

I went to the ER and it was there that they told me that my water had broken and the baby would more than likely be born in the next 2 days.  48 hours.  I laid on the table, in extreme pain, bleeding heavily, crying.  But not crying - because when I would get upset, I would contract and bleed - thus putting Darius in more distress.  They started me on Mag immediately (NOT a walk in the park people! I hate mag! If I even have to take Mag again - I will cry.  It is the WORST feeling medicine that has even been pumped into me.  Awful!) and steroids to help D's lungs to develop faster.  They kept me in L&D for those 48 hours - waiting for labor.  Nothing.  So I was moved to a Antepartum room.

Labor started 2 more times.  Mag was started each time for 24 hours.  I received 6 units of blood in 2 blood transfusions.  And I cannot count how many times doctors came into my room to give me "odds" of D's survival and quality of life.  I think I have counted 5 times that I was asked throughout pregnancy and even in the hospital if I wanted to "change the course of the pregnancy".  The stats of what D could face in life were exhausting.  DAILY from Week 23 until 24.2 - doctors from NICU would come in and ask what measures I wanted taken if D was to come that day.  Daily.  It was exhausting! I had to hear new stats each day, while remaining calm because each time I got upset, i would contract and bleed, and make the hardest decision that I have ever had to make - would we pump him full of drugs to bring him back, would we do chest compressions - breaking his tiny ribs and putting him through agonizing pain, would we resuscitate...these questions asked daily.  And your answer - your answer was NEVER good enough.  For judgement and disagreement would follow - because each doctor had their own opinion and want - and they never matched the other doctor.  At times I would get 2 doctors wanting 2 different things, in the room with me, while I made the decision and have to sit through doctor A agreeing with me while doctor B was trying to get me to change my mind.

Well - we made it to week 25.  BIG stuff people! Big stuff! The questions STOPPED - because at 25 weeks, it's the law that they save the baby - FINALLY - he's considered a HUMAN, LIVING BEING!!!!!!

Saturday I felt bad.  Tired.  Depressed.  Worn out.  Was having contractions - so we started mag AGAIN.  We started an IV for another transfusion to get me ready for an emergency c-section.  I was spent.  I called Ash (who had been working and taking care of the kids) and asked that he come be with me.  i was too tired and needed support from him and my mom.  They stayed with me overnight as the mag was forced at high speed through my veins and the blood was pushed on the other arm.  At this point, finding a vein was near impossible.  I had blown all the "good sites" with all the transfusions and mag and IV fluids that had been going in for weeks now.  We were on my "last good one" before a picline would need to be placed.

I got through Saturday. Sunday - I told them I was still having contractions.  But since they weren't reading on the monitor and I had been on Mag for 24 hours - they took me off Mag and disregarded the contractions.  Sunday night, my pain increased.  The contractions had me breathing through them.  I couldn't take pain meds because D's heart rate always dropped with pain meds.  So I took an ambien to try and sleep.  From 12 am - 4 am I dreamt labor.  So weird - but true - I still remember the dream of me in labor :-) I woke at 4 and was unable to handle the contractions.  I buzzed my nurse and again was told that I was just "uncomfortable" and that no contractions were reading on the monitor.  The lady was NOT listening to me as I told her that I have always had back labor and even my two other kids never set off the monitors very much.

Around 5 am - I sat up, the pressure was too much and i was in too much pain.  I asked for 1/2 a dose of pain meds to take off the edge.  The pain medicine did NOT touch it.  For another 2 hours I breathed through contractions - while telling the nurse I was in labor - and being told it was "nothing".  They checked me at 7 am and said I was 0 dilated (funny because I came in being 2 cm dilated)...? Everyone proceeded to leave - while I was still in extreme pain and breathing through contractions.

Around 7:30 - I looked at my mom and asked for an epidural.  I couldn't handle it anymore.  I was sitting straight up to keep D from pushing down too hard - hoping that putting pressure on my cervix would keep him in.  No one was listening to me.  No one believed me.  I was in labor.  Miserable, in pain, and felt all alone.  My mom told me to hang on for the doctors, that they would round in the next 30 minutes and we could ask for an epidural then.
Right before 8 am - I tell mom that I had the urge to push.  "I have to push!" Mom: "WHAT?!?!" Me: "I have to push *starting to push, at this point I feel his head coming out* Mom - he's coming - I have to push - get someone!!!"
Mom: Runs out to the hall - looking for my nurse.  She is nowhere to be found.  Mom runs back in and pushed the call button.
Call Lady: "Yes?"
Mom: "Um... she has to push?!?!"
Call Lady... has hung up.

Mom runs back out to the hall - looking for nurse.
I am all alone.  In a dark room.  Alone and scared and freaking out because my 25 weeker is about to be born and THERE IS NO ONE HERE!!!!!!
I start screaming: "I'M PUSHING!!! HELP ME! I'M PUSHING! HE'S COMING!!! HELP!!!!!!!"
Words cannot describe the amount of panic and fear I felt.  I was walking myself through all the knowledge I had about birthing.  Grab him by his neck, pull him out, leave his cord intact because that breaths for him, wrap him up fast because he can't maintain temp......... and the facts kept flooding in - all the while i was desperate.  Desperate for a hand to hold.  Desperate for a doctor to come, who could save my boy.  Desperate for NICU with oxygen and tools to come.  Desperate.  Desperate for help.

Moments later, in runs my entire team of doctors.  The nurse asked for me to open my legs so she can "check me and make sure it's real labor" - My reply (perturbed that they STILL didn't believe me!!!!): IF I OPEN MY LEGS - HE'S COMING OUT! SO I'M KEEPING THEM CLOSED!
Nurse: *Shocked and scared* "Um, ya - no, keep them closed, that's good.  ok.  ya."

The Csection kit is opened for an emergency c-section.  The bed is being messed with and I hear "How do we break down the bed?!?!!" a reply from behind the doctor: "We don't - this is antepartum" Doctor:  "then what do we do?!" Nurse: "Um, deliver on the bed - there's no time"
..........Yes - that really did happen.  In front of a scared, freaking out mom who is birthing a 25 week baby.  Yep.

His heart rate is checked - all looks good so the doctor decided that it was best to delivery him vaginally.  I ask for them to make sure NICU is in the room before I open my legs.  "NICU is here and setting up, they should be ready by the time he's here".  I begin to push.  A few moments later - my 2 lb 7 oz baby is born.  He is crying on his own.  He looks amazing! Some random guy was holding him (NOT my doctor) and started cutting his cord.  I immediately yell at him "Do NOT cut that cord until the oxygen is set up! I am breathing for him right now!!!" Poor, scared man looks back, ensures oxygen is set up and looks to me, "It's ready" and cuts his cord.  Final scene of this story - sweet boy is passed to a nurse, who trips and nearly drops him - gets him to the bed, aaaand close scene.

God truly blessed us that Monday morning.  Things could have gone SOOOO much worse. We were NOT prepared to deliver him in antepartum.  It was in the middle of shift change and had I had my horrible night nurse - the outcome would have been awful.  The morning nurse had been my nurse before and knew me and was more competent to help in assisting in the delivery.  We were blessed.

Even now, writing this - I am filled with emotion.  I am scared.  I have tears in my eyes.  I am grateful.  I am sad.  I am just every emotion one can feel.  Such an awful delivery.  Such a miraculous delivery.  Such a scary, quick delivery.  Such a blessing to have a vaginal delivery.  Just so many thoughts and feelings.  I don't even know how to end this post.  I'm all over the page - overwhelmed

See? One for the books.

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....