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. 

Craniosynostosis

A big word for a small baby.  Our son was diagnosed with a condition called saggital craniosynostosis at 3.5 months old.   It was actually overlooked by our pediatrician. Even after we brought it to her attention, she seemed unconcerned.  Needless to say, we have moved to another doctor for our tater baby.  So, if not from our doctor, how did we discover Archer had a birth defect?

I had been going to the chiropractor for prenatal visits starting around the middle of my second trimester, for hip pain.  She had told me that after my baby was born, she would do his first visit for free.  We discussed the pros of chiropractic care for aligning baby after descending through the birth canal, help with breastfeeding, digestion issues, and sleep.  Chance & I had met our deductible, so we decided to go ahead and pursue chiropractic care for our newborn.  I can't say it's helped with sleep (sadly), but she was able to align a jaw issue he had, which was effecting his breastfeeding on one side.   I had been in a lot of pain and thought something must be wrong with MY body, resulting in a bad latch or positioning.   Turns out, he had a tight jaw on the left side, so he was unable to open as wide when latching.   I could tell a difference that night after his first visit.  I was sold!

So, we have continued to see the chiropractor, Dr. Bell, each week, or every other week, since Archer's birth, four months ago. We had noticed Archer had a funky dome, but babies have weird heads, and we didn't spend a lot of time evaluating their shapes for the "norm".  Archer also would not really allow us to touch his head much, even since birth.  He always seemed very sensitive and would cry when we rubbed his head or attempted to put on a hat.  Because of this, we never really feared "touching the soft spot" or feeling around on his noggin'.  We just assumed he didn't like his head touched.  Combine that with all his other temperamental oddities and it didn't strike us as unusual in the least.  On September 30th, when we went in for our chiropractic appointment, Dr. Bell felt along his head and said "hm. when is the last time you saw the pediatrician?"  I happened to have gone in the week before for his never ending baby acne.  She continued to feel his head and had me feel a ridge along the top.  She noted that we should go see the pediatrician because it could be a suture that has fused.

Huh?

I had never heard of sutures.   It hadn't crossed my mind that my baby's skull would close up too soon.  That's a thing!?  So, I of course asked, "What if it is?"  Dr. Bell didn't act overly concerned, but said that it would require a surgery, that would of course not be fun, but was routine enough that babies handle it really well and are completely fine postoperatively.  We left that day a little on edge, and of course, as usual, Archer cried the whole way back home in his car seat.   My mom talked to me on the phone and was very adamant about me not googling it before seeing our pediatrician.  I actually didn't until a few days later.   Then I saw the photos of other babies with saggital cranio and I was 99% sure that Archer had this same birth defect.

Why had I never heard of it?!  Why had so many doctors overlooked it? Why had so many pediatricians blown off other parents' concerns about their babies head shape?   Why did I know more about this condition from Dr.Google than my physician, who I paid to look out for this type of thing?

Craniosynostosis effects 1/2000 babies, starting within the womb.  While it can be caused by a syndrome, it is most often isolated, which is the case for us.  It is not in our genetic history, at all, on either side of the family.  Our doctors assured us that there was nothing we could have done to cause or prevent it. It's a condition that researchers have not been able to determine a definitive cause.  It just happens.  Had my chiropractor not spoken up, we may have waited too long for the less invasive, endoscopic surgery.  While still a major surgery on the skull, it did not require an ear to ear cut, like the more invasive, cranial vault reconstruction.   The CVR surgery is highly effective and requires no helmet therapy, but it's not handled as well by babies and almost certainly requires a blood transfusion.  Our doctors at Duke were thrilled that we made it *just in time* for the endoscopic procedure.  Archer was diagnosed by the chiropractor on 9/30.  Confirmed by xray on 10/7.  Confirmed by the nuerosurgeon on 10/22.  Underwent endoscopic craniectomy on 11/4.  Needless to say, it all happened VERY fast.

In the next few days, I will post up our story of the surgery. In the coming months, I intend to follow up on our helmet therapy journey, as well.  I hope that any mommy who is scouring the internet after a diagnosis, or a gut feeling that something is amiss will find this blog and feel less alone.  While this is a shocking condition to find out your baby has. It is treatable, and your child will recover faster than you would even recover from a procedure at the dentist.

For more information on our surgery, visit:
http://www.thetp.org/article/view/4165/5039

What they don't tell you about newborns...

My long lost blog. We meet once again on a rainy day in..October?? Wowza! Time has dropped like sap out of a tree and at the same time flown on by.

I sit her gently rocking too and fro as my sweet angel child slumber a in my arms. Who's that you ask? Why yes we did have s baby! And why no, he's not as angelic as I claim :)  Our son, archer, entered the world on july 14th, two weeks ahead of schedule. The ultimate curious critter, he could not wait to see all this place had to offer. Turns out it was more than he bargained for and quite frankly a bit overwhelming. We should have known that 2nd night of his life, as he wailed in anguish over a gassy belly, that we were in for it! Not all babies are unicorns and rainbows. In fact, some have all the little struggles, not just one or two.  Time to get real yall! Archer spent the first 7 weeks of life screaming in distress. We, as parents, of course were also totally overwhelmed (particularly mommy). Worry enveloped our minds as we struggled to remedy our sobbing infants problems.

It's a bad latch.
It's gas.
It's silent reflux.
It's an oversupply of milk.
It's a forceful letdown of milk.
It's colic.
He's high needs.

We ran the gammut of "it must bes" and even had him on baby Zantac for a week. Let's just take a smidge of time here to say...what the humph are people thinking making infant medicines taste like "strong peppermint". Disgusting. Even an adult wouldn't like that. Then, then! Well mask it with grape to try and overpower that sweet minty goodness. Blech! I pity any child (and family) who has to consistently use infant Zantac for reflux. With that said, our baby did not have silent reflux. He slept in his back at night and slept pretty well all things considered.

Our little buddy had the hardest time getting to sleep during the day. Those first 6 weeks were BRUtal! I bounced on an exercise ball as he screamed in my ear. I prayed for help, I prayed for relief for both myself and arch man, I prayed for sanity, anything. Everything. I pleaded with God with the fervor of Moses pleading for the Israelites. I could not understand why we were having such a hard time. Now by this point my poor tater baby was exhausted from all crying, no sleep. I started going into the dark bathroom to bounce him with white noise blaring through the darkness. This worked!

That leads us to the 2nd stage of brutality. We eventually put up black out curtains and I spent the following 7 weeks in the dark nursery bouncing. White noise screaming. And occasionally Netflix once archer was way out asleep. He would wake the nanosecond I attempted to lay him down or even move off the ball, to rest my back in the glider. My parents visited during this stage and my mother reminded me how victims of torture are treated: solitary confinement, no sunlight, loud noises, physical pain, sleep deprivation. So, fantastic! I was being tortured. (Ok a bit extreme.. but is it?)

As the days passed by, my dear babe grew into a man, and I bounced him off to college. Okay of course not, but he did become a very heavy baby. At a 12 week doctors appointment he weighed 14 lbs and that's when I knew... I could not sustain holding my baby for every nap, hours of the day, on an exercise ball. My back was in agonizing pain, so I transitioned to the glider. Enter stage 3 of brutality. Screaming! Oh, the screaming. Tater baby did not want to be rocked. "Bouncing only mom", he said in ear piercing squeals.  But eventually he gave in (somewhat). This is our current state, where he fights sleep unlike any thing I've ever seen. Worse than those sad toddlers who are so exhausted but trying to accomplish a task (eating, playing, coloring). He cries himself to sleep eventually. All while I jiggle, rock, pat, and shush him into drowsiness.

Now you've read a snippet of our life for the last 3.5 months. There is oh so much more, but I'll let that soak in for the optimal full experience to come. Perhaps I'll even delve into my birth center birth experience for you. (Don't fret, it was actually an amazing natural birth) My physicians determined archer was simply a "high needs" baby. And Dr. Sears knows his stuff, because he describes my baby to a T! Demanding babies that end up empathetic and full of independent leadership qualities.  So there is hope for him in the long future. We have it rough but we do finally have lots of smiles, easy breastfeeding, a mostly healthy tank of a boy who is attentive to his surroundings with killer neck control (I believe from arching back crying so much cause tummy time never happens round these parts).  I love him to death and could kiss his face off, even when it's grumpy as an old man or red as a tomato.

Transitions

Transitions?  Why you so hard?

The last few months have stretched and grown me in ways I cannot even begin to explain.   I know, cliche, but really!  Moving to a new state was a pretty big deal at first, but now it's pretty normal.  I miss home (Texas forever!), but now that we are in our new house and settled into a somewhat usual routine, things are just...normal.  Different than before, but what is now normal to me.

This is a blessing no doubt, but also brings me too often to a place of discontentment.  Ah, my sinful heart, always set on myself.   The "what now?" "What next?"  starts to kick in.  I have realized, in the last few weeks especially, that I truly define myself by what I'm doing, and then feel totally defeated when I choose to slack off and not accomplish my daily goals or tasks.  I spend lots of time distracted by technology (like most Americans!)  and content with a busy to do list, which oftentimes doesn't get fulfilled...because I'm worrying about all I have to do or 'medicating' with distractions.  God has been gracious in revealing to me this area of weakness, and now I am to choose what to do with that!  I can be angry and annoyed and say, "whatever" or I can accept and agree and change my life, focusing on Him and my family as my two most important areas of service.  As my husband and I are expecting our first baby in July, now is the time for me to let God rearrange my schedule.  I need that and I want that.

This year, I embarked on an incredible journey through Bible Study Fellowship.  Wow!  I just have to say that kudos to BSF leaders of the world!  You guys are total world changers and while it doesn't always feel like you're doing anything at all, you are obedient to the Lord and He will bless you tremendously for your service to Himself.  Last spring, in Austin, I had been asked into leadership after finishing up my first year in BSF.  I was so excited to do life with those sweet women in the leader's circle.  Lots of young moms and seasoned BSFers.  It felt like home.  Upon our relocation, I was still encouraged to be a part of the study, even as the role of group member instead of group leader.  God honored His call for me to pursue leadership, and trust in His timing, by allowing me to be asked into the leadership here in NC.,too.   I eagerly accepted, and am so grateful I did.  I have been able to minister and shepherd a great group of women this year.  While the faces of our group have changed throughout the year, so far, there are those who have stuck with it week after week.  Each woman holds a special place in my heart, as I have prayed for a special love for each of them.  The Lord has certainly granted me that.  I have wrestled with God in trying to control my group discussion time and to do things "right", but I have learned that that is not His goal for me.  He wants my heart and my trust, total dependance on Him to provide me with exactly what I need, when I need it.  BSF leadership can be hard when you are striving for excellence and frequently fall short, but where sin exists, grace abounds all the more!  What a joy it has been to see my own personal growth during the first half of this study.  I am more diligent in prayer, more attentive to how I can train and shepherd other women in my life, and more bold in my faith. I also have seen what true leadership looks like from the inside.  These women in my leaders group are phenomenal.  I am so inspired by their diligence in prayer, in reaching out and making contacts, and their genuine attitudes that point towards Christ.

So, for today, I just wanted to share how much I am looking forward to the remainder of our study in the life of Moses and encourage anyone seeking community and a life changing study of scripture, to reach out and find your local Bible Study Fellowship.  I was most certainly not disappointed!

Furthermore, I would love you to pray alongside me as a I ask for discernment on what it means to put God first in my current circumstances.  Prayers also for a hear that is willing and eager to accept the changes.

Until next time,