Pediatric ICU

Following our meeting with the surgeons, we were taken to the Pediatric ICU (PICU).   Can’t lie, the waiting room was pretty ghetto.  I mean, it had seen better days, like maybe in the 80s.  Poor Chance endured a lot of the night on the hard uncomfortable chairs in that room, listening to some hill people talk about shooting someone.   And of course, later, my mother befriended those same hill people.   What a sweet lady she is.  Back to the post op:  We waited there for a bit before we were called to come see Archer in his shared room.   I pumped for the 2^nd time, and boy am I glad that I did.  I spent a lot of that day engorged and on the brink of getting an infection, due to not being able to nurse my exclusively breastfed baby. 

Nothing could have prepared me for what I walked into in that recovery room.   I had read other people’s blogs, heard other momma’s stories, and knew factually exactly what I would see.   And in actuality, Archer did not look too bad.   He didn’t have any visible swelling yet.  It was supposed to peak the evening of post op day 2, but his actually went down really quickly on post op day 1.    Chance and I walked in and see our baby on his crib bed, coming out of the anesthesia at around 12 o clock, noon.  We had already experienced a foreshadowing to this when he was mildly sedated for the CT scan, which I mentioned in the last post.   It was pretty tough.  He had been intubated during the procedure, so his cry was super scratchy and really drawn out.  He was in pain.   There was a sweet nurse hovered over him patting him and holding him close trying to comfort him.   She later revealed that she should have known he couldn’t be set down, because when they went to get him from the OR, the nurse there was holding him.  They’d stuck a paci in his dry little mouth, which hung onto the side of his lip as he attempted to cry.  I immediately took that paci out. Archer doesn’t use one, and it clearly was not doing a stinking thing.   His mouth was so dry, you could see the little hairs on his tongue.  He was exhausted and had tubes attached at both ankles, EKG monitor pieces stuck across his chest and abdomen, tubes in one wrist, and several tubes in another wrist that were tightened down to a hard piece of board that spread the length of his forearm to prevent him from pulling them out.   They’d attempted to swaddle his large 16 lb. body in a receiving blanket, but his feet came out the bottom. 

Chance and I patted him and talked to him, but he would open his eyes for a moment, then just break out in one of his horrific arm shaking, tomato faced cries. That was the last time he laid on that bed for the next 20 hours, except for 3 diaper changes and a re-swaddle.  The nurse told us to go to the bathroom, and then she would help us pick him up to hold.  We hurried out to the waiting room and told our parents that he was crying and it was horrible, but we were hurrying to the restroom because we might be in there a long while.  When we came back in, the nurse was holding and rocking Archer in her arms. I cannot express my gratitude enough to this sweet nurse for nurturing my son and caring for him with empathy and love.  

Now, my baby is one who needs strongly to be soothed to sleep, even when he’s feeling fine and hasn’t just had a piece of his skull removed.  So, the nurse helped me sit in this horrible recliner thing that was a v shape that you just sunk into.  That was not effective at all.  I sat on the edge of the recliner, which was like a hard piece of wood, and rocked my whole body back and forth.   We could have 2 people in the room at a time, so Chance went to get my mom.  She came in and stood with me while I stood awkwardly holding my sobbing and screaming baby.   I lightly bounced him in my arms to try and get him to go to sleep, and we held his white noise close to his ear while shushing.    I would sit down and rock on the end of the chair sporadically, when my back could no longer handle the pain of holding him in the position I was forced to.  The other patient in the room was being transferred out, and then came in a cleaning crew.  They were banging all around as I was attempting to get sweet Archer to sleep. Then, I kid you not, one of them starts singing.  WHAT!  The beatles…but it did not sound soothing and lulling. It was unbelievable.  We actually gave a half hearted grin and said “this cannot be happening”.   Then, just when we felt like we were on TV, a super loud floor polishing machine goes whirring by.  MY POOR BABY!  He was so tired and in pain, and all these stupid noisy things were going on.   The doctor on duty came in and said they would administer morphine if he seemed to be escalating, and my mom quickly let them know “He IS escalating.”  He remained on morphine that entire night.  A short bit afterwards, we put water in his mouth and on his tongue and he desperately starting sucking on my finger  He was so thirsty.  I was able to nurse him for just a short bit, before he started crying again.   After a while,  my boobs were killin’,  as it was nearly 6 pm, so I handed Arch to my mom and ran to the waiting room to pump and eat some snacks from my bag.  Chance went back to see archer and returned to report that my mom said, “He is sleeping and calmed down now, so don’t feel like you have to rush back because he’s in here crying.”  That was a HUGE relief.  While those 6 hours seemed to tick by slowly, it also seems so short in hindsight.   I remember later looking up and it being 9 pm and thinking, how have we been desperately trying to make archer comfortable for 9 hours!?  

Chance had successfully tracked down just the right people to bring in a rocking chair for us, and that was when things finally began to calm down.   We transferred to the rocking chair around 10 I believe.  I rocked him there for a while until, again, I HAD to go pump.  My mom took archer for a while, and then we swapped again.  At this time, we were able to wet his mouth again, and get  him to nurse a full session.  Praise God!  It was so nice to see him eating. The doctor said we could begin oxycodone orally, since he was nursing, but I declined and asked to continue the morphine.  It was quite a bit of medicine to give orally, despite it having a longer life in his system.  He needed rest, and I knew that would just amp him up.  During all of this,  Chance was such a trooper. He wanted to be by Archer’s side, but he wanted to do what was best and most supportive for the baby and me. His sacrificial nature that day will not be quickly forgotten.   I know that must have been very hard for him to not feel like he was tangibly helping.  My mom’s strikingly similar body shape and demeanor as myself made the transition back and forth easy for Archer.  It was much like just being held by his mommy.   Chance came in and slept in the horrible, hard recliner for a couple of hours, while I rocked.  It was nearing 2 a.m. and I was hoping to have my mom come and take a shift, so that I could get an hour or so of sleep.  She came in and roused Chance, so he returned to the waiting room and I took the horrible, hard recliner.  My mom stayed up all night long, and never got a nap. She rubbed my neck, while I stood in pain holding my baby in a way that all the wires and tubes wouldn’t be pulling or crunched.  Most of all, though, she held our little baby and rocked him, so that he could get as much rest as possible for maximum healing throughout that night.  I cannot thank her enough for her sacrifice that night.  I never doubted she would do so, and I couldn’t have done it without her.

There was a nurse shift earlier in the evening, and our 2^nd nurse was a little colder than the first (who was just the best!).  She kept coming in and tinkering around on the machines and making things beep, while administering more morphine and checking his levels of things. It wasn’t her fault, but it kept rousing poor Archer, and we had to work very hard to make sure he didn’t escalate back into a cry.  His swelling had definitely started, but since he wasn’t laying down flat, it all swelled out the back side of his head. It looked super long, and you could no longer see the deep dip in his skull where the fused suture had been holding down tight.   If he had been laying down on his back, we would have likely seen more swelling up front, in his eyes and cheeks. That was a very, very long night.   I would not wish that experience on any mommy ever.  I know many moms said their babies just slept post op, but mine did not.  He needed rest and did not know how to get it on his own.

Surgery Day

As always, I apologize for the silence in blogland.  I've been enjoying my time with my newly happy and sleeping baby!  Yes, you read that correctly!  My dear baby has transformed from a dragon to a unicorn...okay not so much a unicorn, BUT he has become much more "regular" in the temperament and department.  Sleep is still an ongoing battle of the wills, mom vs. son, but has improved drastically at the end of leap 4. Those of you who are following your baby's development via the wonder weeks book (or app) know what I'm talkin' about.  Let me get an AMEN!  Leap 4 don't play!  So glad it's over, even though leap 5 is lurking at my back doorstep.

So, now for the next description of our cranio journey.

Pre-surgery, we spent 3-4 days at Duke Children's hospital getting ready for surgery.  We had an initial appointment with Dr. Fuchs, the nuerosurgeon who, from seeing and feeling, confirmed the saggital craniosynostosis.  He requested us to have a CT scan done 2 days later for absolute assurance that it was only the one suture causing us issues.  He said that the frontal and back bossing (protruding of the skull in those directions) wasn't bad, and of course he wanted to be 100% sure before making an infant undergo brain surgery!   That was horrible.  Let me just say, that seeing a baby come out of mild anesthesia was bad!  Archer went in for the CT scan and it was heartbreaking!  Because my sweet dear son cannot fall asleep in just any conditions, he was an overtired disaster that morning.  He was starving and irritated, and would not settle down long enough for a 30 second scan.  He had to be sedated.  While coming out of sedation, we were able to stay in a room to ourselves and I bounced him to sleep in my arms.  I held him for about 45 minutes as he slept.  He then started to come to....right as we smell something strange....and an announcement blares on the intercom "Code Red" "Code Red".  Any of you guys know what code RED means?  Yes.  A fire in the building.  I seriously cannot make this stuff up!  So we had to evacuate!!!  There was smoke and it smelled like an electrical fire.  Turns out it was on the floor above us.  Thankfully, it was taken care of swiftly AND it was a beautiful day outside.  We had to wait a bit longer for archer to rest enough so that he would nurse, and then we were discharged.  We had a pre-op appointment as well that was relatively scarring for a momma.  Archer was once again exhausted from not napping all day (up from 6-1) and then had to have blood drawn.  Oh my heart!  Even remembering it now makes me want to go pick him up and just hug all over his little self.  He had to be pinned down and we tried shaking toys, administering sugar water drops, talking to him, anything and everything, but nothing worked.  He screamed at the top of his lungs, and his sweet little face was as red as it could get.  He ended up falling asleep in my arms as we walked to the car. :(  We also saw Dr. Marcus, the plastic surgeon who would be removing the fused suture and following up with us on his helmet therapy.

Surgery Day: Nov 4th, 2015

Archer had his usual restless night of sleeping, but was up at just the right time (2:30) to feed.  I had to make sure he was done eating by 3:00 in order to arrive at the hospital by 7:00 to be admitted for surgery.  The hospital was about 35/45 minutes away, and of course, my baby did NOT sleep in the car.  We arrived on time and then had to wait for the nurse to call us back to the pre-op area to begin the check in process.  Poor tater was pretty hungry and I felt bad for holding him.  He smelled his breakfast at face level, but I couldn’t let him eat it.  Chance held him and I tried to distract him with noises and toys.   His grandparents were with us, ready to help and support us with anything we needed during the presumably rough stretch ahead of us in the next few hours. 

We were called back after about 10-15 minutes and then had to wait in another small room, where we met with the neurosurgeon, Dr. Fuchs to review the procedure.  Keep in mind that at this point, Archer is way overtired and super hungry. I was mostly anxious because I just wanted them to get on with it, so he wouldn’t get more and more worked up from needing to nap.  I honestly don’t remember really anything that happened back there other than nurses popping in to put stuff into a computer, while we desperately tried to keep our poor son distracted from his exhaustion and hunger.  Chance had introduced Archer (well all of us) to a cheesy tom & jerry cartoon he used to watch as a kid.  Yo queiro Mama.  Youtube it.  You won’t regret it…or will you? We played that several times on repeat for Archer.  Somehow it kept him mesmerized.  He also loves scrolling through instagram.  Weird, I know, but he gets super still and quiet and holds his hands together like he’s praying.

At last, the anesthesiologist came in to give us her run down of procedure and risks, and said she would be the one to carry him back.  At this point, I expected it to be hard to hand him over, but I really just wanted him to get the surgery over with.  Waiting 2 weeks for our first appointment to diagnose, then being at the hospital for several days for appointments and scans, and then waiting another week and a half for the procedure was long enough to make you go mad with anticipation.  The anesthesiologist was a very sweet woman, and Archer went to her no problem.  There was no crying (shocker) even as she carried him down the hall to the OR.   I was most fearful of him crying being taken away, since he’s so cranky when tired.  The Lord spared us that.   I’m so thankful he did, because I was not prepared for the next step in the process.

We sat and waited for about 30/45 minutes and were then called and told that the surgery had started.   Roughly 50 minutes later, we were called to go meet with the doctors. His endoscopic craniectomy was complete, and both the nuero and plastic surgeon (Dr. Fuchs & Dr. Marcus), said the procedure went exactly as it was designed and that there was minimal blood loss.   No blood transfusion was needed!  A transfusion is often required due to the small size of babies.  I guess our tank of a baby was big enough to have enough blood to skip that. 

We were praising the Lord for a textbook case of saggital craniosynostosis and a smooth operation. The plastic surgeon said, “I almost didn’t even break a sweat.”   We were so thrilled with our entire experience at Duke Children’s hospital in Durham, NC.  I cannot speak highly enough for the staff and surgical team there.