Feeding Plan and Discharge

The nurses immediately got down to busy trying to get Ethan to eat.  They took a completely different approach from the medical team at American Fork Hospital.  In American Fork they were treating him as a preemie. If he wasn't awake for a feeding, they wanted to let him sleep and just feed him via the NG tube so that he could conserve his energy for the next feeding.  At Primary Children's they made him work hard in order to allow him to be discharged faster.  

A speech therapist came to observe one of his feedings and noticed that he was making some choking sounds when he was trying to eat.  A Modified Barium Swallow Study was ordered and we discovered that about 1/3 of what Ethan was taking orally was not making it to his stomach - he was aspirating it into his lungs instead.  No wonder the poor kid didn't like to eat!  So I guess it's kinda dangerous or something to have fluid in your lungs (who knew?) and he was put on a diet of thickened breast milk which made it easier for him to swallow and get the milk down the right tube.

Our feeding plan was as follows:  pump, thicken, bottle feed, finish with the NG tube.  Two ounces every three hours.   Two ounces doesn't sound like much, but each feeding took a little over an hour to complete.  When you figure I was on strict orders to feed him eight times a day, over an hour for each feeding, it was a full time job just keeping the little guy fed.  Not to mention the constant washing and sanitizing of bottles/pumping equipment, diaper changes  countless doctor's appointments and all the regular things that come with caring for a newborn.

Big chair, little guy - Swallow Study

Once we had his feeding plan in place we were discharged (with a list of half a dozen different doctors to call and follow up with).  He was only at Primary Children's for two nights making it 11 days total since he was born.  We were overjoyed to bring him home and also a little scared to do it on our own without the help of nurses.  What a precious little gift we had been given.  Now it was totally up to us to ensure he had the best care possible.

Dad carrying Ethan out 

Home at last

Diagnosis and Transfer to Primary Children's

As the test results started to come back, things began to look up.  His EEG showed normal brain waves - so no seizures after all.  He passed his second hearing screening - he could hear after all!  His bilirubin levels were back to normal after time under the bili lights.

We were actually very fortunate that he was in the NICU for so long because it wasn't until he had been in there for several days and a new doctor was on call that they found the cause of his odd head the shape (long and narrow).  Almost immediately after looking at him and touching his head the doctor said, "His skull is fused!"  She sounded almost excited about it and proceeded to tell me how she had only seen a few other kids with this condition (Craniosynostosis) in her 30 years of work.  She told me it is totally fixable by surgery and that Primary Children's Medical Center had some of the best surgeons in the world for it.

Honestly after all we had been through in that first week of life, this new diagnosis came as almost a relief.  It gave me hope that his chromosomal tests would come back normal, since the major reason they were ordered were because of his funny looking noggin.  And it didn't have to be permanent.  Although the thought of making my baby undergo a surgery on such a sensitive part of his body was (and still is) scary it was a much better future than some of the others we had been presented with.  He wasn't deaf.  We wouldn't have to worry about treating him for seizures.  And now maybe, just maybe, the tests would show he was chromosomally normal!

Since things were looking up and I hadn't really been home since my unexpected induction a week earlier I decided to go home for the night.  It felt heavenly to sleep in my own bed but wrong that I was home and my baby wasn't.  Early the next morning we got a phone call saying we needed to "get to the hospital soon.  Ethan was going to be transferred to Primary Children's Medical Center."  What?  But, everything was going well when we had left the night before.  We were told that the medical team was worried that his skull was starting to bulge because of the pressure his brain was putting on it so they needed to transfer him to more qualified hands.  Then I REALLY felt guilty for leaving him for the night!

Getting ready for his ambulance ride

When we got up to Primary Children's Ethan went in for a CT scan of his skull from which they were able to make a 3-D image on the computer.  What a cool technology!  Also we got a call saying Ethan's chromosomal testing all came back as normal!!!!!!!!!!!!!!!!!!!!!!!  Our baby boy really was going to be ok!

Tiny little guy getting the CT scan

3-Dimensional reconstruction of Ethan's Skull - showing the fused suture causing a ridge on top of his head

We then met with Dr. Kestle - a neurosurgeon, and Dr. Siddiqi - a plastic surgeon.  They gave us Ethan's official diagnosis of Saggital Craniosynostosis and explained the surgery they would perform to correct it.  They explained that the suture along the top of his head was prematurely fused and he had no soft spot which meant his brain did not have room to grow the way it needed to.  If we did not fix the problem by removing a big strip of his skull, it could result in permanent brain damage.  They said we were lucky to have caught the problem early in life because they are able to do the surgery endoscopically since his bones hadn't hardened and thickened yet.  If the problem hadn't been caught until even a few months later he would have had to go through a much more invasive procedure.  We scheduled the surgery for when he was two months old and they said he would have to be in a helmet for a year afterwards to make sure the bones grew back correctly.  A year seems like a long time to have a constant physical reminder of all that he's been through, but I suppose we'll get used to it quickly enough.

I'm so grateful that we live so close to Primary Children's and all the world renowned experts they have working there.  People bring their children from different states all around to be treated here. I have heard nothing but good things about Dr. Siddiqi and Dr. Kestle and all the miracles they have been able to work.  I can feel confident going into this that Ethan is in the best of hands.

9 Days in the NICU

I have been dreading this post because it is about the hardest part of the journey we've had thus far.  Bear with me through this one - the story will get brighter.  Promise. 

While Ethan and I were snuggling for the first time I noticed that he was panting but didn't really think much about it.  Usually babies are pretty alert right after delivery and want to nurse, but Ethan just closed his eyes and laid still on my chest.  They said this was pretty normal for a baby whose mom is on the magnesium sulfate (mag for short).  The poor baby comes out feeling the same as their momma does- sick and lethargic.

I was still laying in bed and hooked up to the IV as they wheeled me down to the mother/baby unit.  I had to continue to be pumped full of the mag for 12 hours after delivery.  Dustin left with Ethan to perform the ritual of the first bath, and I pretty much immediately passed out.  My mom must have left somewhere around this time too.  When the nurses woke me up an hour later to do vitals (they would continue to check my vitals every hour for the entire time I was on the mag and then every 2 hours for the following 12 after that) I realized Dustin still wasn't back from the bath.  I asked what was going on and the nurse informed me that Ethan's was breathing abnormally so they were hooking him up to be monitored in the NICU.  I had no idea how hard it would be to get him out once he was in there.

I don't think I fully comprehended what they had told me because I allowed myself to be sucked back under into an uneasy sleep right after the nurses left again.  A couple hours later I struggled to consciousness, fighting the fog in my head and asked if I could go see my baby.  The nurses wheeled me to the NICU (I wasn't allowed to walk while I was on the mag since it makes you so dizzy).  Honestly I hardly remember those first 24 hours after delivery.  Between the magnesium sulfate, sleep deprivation and stress of it all my brain didn't have a chance.

Our new little family - all together for the first time

Ella meeting her baby brother

Then all the bad news started coming.  Our regular pediatrician was on vacation the entire time we were in the hospital so we saw whatever pediatrician happened to be on call each day.  The first day the pediatrician told us that Ethan had some signs of a chromosomal disorder (he used Down Syndrome as an example but said there were many others that were less well known) - his head was an odd shape, he had a single simian line on one hand, and his testicles were not descended.  The head shape could just be due to the vacuum and the other things could be unrelated but we needed to be aware of the possibility that our baby would never be "normal".

Ethan continued to show no interest in eating, well after the effects of the magnesium sulfate should have worn off and each day he was in the NICU the doctors and nurses seemed to find something new to worry about. High bilirubin levels, a huge hematoma on his head from the vacuum, a possible seizure, he failed his hearing test, he was being tested for an array of chromosomal abnormalities, and lack of eating = "failure to thrive" (a depressing term, if I ever heard one).  It seemed like we would overcome an obstacle one day only to have our world shattered all over again the next.

Getting prepped for an EEG because of his "seizure"

EEG being done to look for abnormal brain waves

When he continued to refuse to eat they placed a feeding tube in his nose.  He needed 60 mls of milk every three hours so we had a routine.  We would try to coax him to eat orally for about 20 minutes.  Breast or bottle he would usually only take about 10 mls.  The remaining milk would then slowly be pumped into his stomach for 30-40 minutes while either Dustin or I held him.  Then I would pump for 20 minutes to supply milk for the next feeding.  The whole thing took well over an hour so I spent A LOT of time in that chair by his bed.  I would let the nurses handle the feedings on their own about twice a day but I still had to wake up to pump each time, so to say I was exhausted (physically as well as emotionally) would be an understatement.  Ethan was such a sweetheart through the whole thing.  He hardly ever cried and when he did all it took was a soft stroke or a quick snuggle and he would stop right away.  It's almost like he was just checking to make sure I was still there.

Ethan with his feeding tube

I would have a couple days where I felt strong - like I could handle it all.  And then I would have a day where I would just crash and be unable to stop the tears from flowing.  At my lowest point I started to question my role in this.  Had a forced this child into being because I wanted him so badly?  My body had fought me literally every step of the way.  Was it a selfish desire on my part to have a second baby, when I should have just been happy with one?  I felt like such a failure.  My body's main purpose as woman was to carry and bear children, and here it had fallen short and created something that was, in a way, so imperfect.  He certainly didn't deserve this.  I had been unable to give this child the advantage of a healthy start to life, the way it seemed other mothers did without trying.  My love for Ethan never wavered but when I looked at him I found myself searching for signs of all the problems I was told he might have, rather than seeing him for the beautiful boy that he is.  It took a lot of faith that God's plan is greater than my own and a lot of praying (still does) to receive the comfort that I needed to change this way of thinking.  

A Special Delivery

Meeting my little guy for the first time certainly didn't go as planned.  At my 37 week appointment with my OB we discovered my blood pressure had shot up.  He sent me over to the hospital to do a non-stress test and some lab work.  My blood pressure returned to normal during the non-stress test but my labs came back showing that my platelets had dropped a significant amount since my scare in the hospital 9 weeks earlier.  The doc was reassuring that the dropped platelets were probably just due to the reduced kidney function from my hydronephrosis but that to be on the safe side we would do a 24 hour urine catch to check for other signs of pre-eclampsia.  They told me to bring my bucket of urine back the next day and to also return that weekend for a repeat on the non-stress test and lab work.  I was told "we are WAY over treating you, but it is better to ere on the side of caution with these things."

My bucket of urine I had to keep in the fridge - nasty, right?

I returned to hospital the next day around noon with two jugs full of urine, an empty stomach, and my almost-three year old in tow.  The plan was to drop off the pee (good riddance) and grab lunch with Ella before running errands.  The nurse told me I couldn't go anywhere until the lab processed all that urine and came back with the results.  So I was strapped up to the monitors for another non-stress test, cartoons were turned on the TV for Ella and we sat down to wait.  The nurses were super nice and brought Ella snacks since we were both starving at that point, but I was only allowed juice - just in case, they said.

Bored waiting to be released from the hospital - or so I thought

An hour and a half after arriving at the hospital the nurse came back into the room with my lab results.  Her words as she walked into the room: "You're staying to have this baby today."  What??? No. No way.  The next day was my birthday, I said.  I had a lunch date with my Grandpa and then pedicures with a girlfriend scheduled!  Babysitter lined up for the weekend! These reasons didn't seem to move the nurse so I tried again.  I felt fine, really!  Couldn't I at least take my poor kid home, pack my hospital bag and come back later?  The answer was that pre-eclampsia is too dangerous and I needed to be induced right away.

So I was immediately moved into a labor and delivery room and started on an IV of pitocin.  My juice was taken away and I was put on a strict diet of water and ice chips.  Two desperate phone calls later and Dustin was on the way to the hospital from the office and my mom was on her way to my house to pick up some necessities and then to the hospital to come get Ella.  Then my phone battery died and there I was on my own trying to process what was going on. By the time my mom finally arrived to rescue her from the hospital, Ella had been there about 5 hours - a LONG time for a kid her age to entertain herself while her mom is strapped to a bed unable to help her.  She did incredibly well considering and was so sweet to me.  When she heard me complain about missing lunch she started sneaking me goldfish crackers from the bag the nurses had given her.

Dustin rushed right to the hospital after I called him but when he arrived I was irrationally angry with him.  How could he leave me so much on my own that I had to take our daughter to the hospital with me when I was going to be induced!?!  The fact was he was just as shocked as I was that we were there about to have a baby.  He dealt with my illogical resentment very well and gave me the support I needed to wrap my mind around the fact that this was happening now - whether it was the way I had envisioned it or not.  I tried to get over the surprise of it all and get myself excited to meet my little man for the first time.  A moment I had been looking forward to for what seemed like years.

Around the time Dustin arrived they started me on magnesium sulfate to treat the pre-eclampsia.  Ooooh, magnesium sulfate.  Anyone ever been on this stuff?  If not let me just tell you:  It. Is. Awful.  It makes you feel like you have a bad case of the flu.  Flushed and sweaty as if with fever.  Throwing up.  Hard to focus.  And the side effects only grow stronger the longer you are on it.  Everything about the day is a little fuzzy from this point on.  I do remember multiple people from the medical staff as the wandered in and out of the room commenting on how surprised they were to see me smiling through it all.  They said it was unusual to see a cheery demeanor when a woman was on the magnesium sulfate.  Even though I felt terrible I had finally gotten over the shock and found the thrill of knowing I was having a once in a lifetime experience.

The nurses kept asking me if I wanted my epidural yet but I didn't see any reason for it since the contractions weren't super painful.  The nursing staff switched at six pm and my new nurse came in and said if I wanted to be put on the list for an epidural now would be the time to do it. Things were starting to get busy and the anesthesiologist had a long list of women who needed them.  I agreed mostly because they seemed so anxious about it and by the time the anesthesiologist came my contractions were finally starting to pick up and get painful enough that I was squeezing my eyes shut through each one.  I think I could have labored without the epidural for quite some time but I suppose there's no reason to go through unnecessary pain if you're planning on getting one anyways.

After the epidural was put in I stalled out at 4 cm.  Around this time they also had to put me on oxygen because the baby's heart rate kept dropping.  I texted my friend Anna to see if she would be willing to stay the night at my house with Ella so that my mom could be there when Ethan made his debut into the world.  Being the awesome friend that she is, she agreed.  Dustin's family had left on vacation the day before (after many promises that I wouldn't have the baby while they were gone - Ha!) and so they were going to completely miss the whole thing.  

At about a quarter to midnight the nurse checked me again and I was 6 cm dilated.  She said things would probably go pretty fast and to call my mom if I wanted her to be there for the birth.  She was right!  About 10 minutes later I started feeling an intense need to push.  It was so neat, because I never had that feeling during my labor with Ella.  The nurse checked me again and confirmed that I was fully dilated.  The doctor was called in and the pushing began even though my mom wasn't there yet.  There was no way I could resist the urge to push. 

After pushing through just one contraction I heard the doctor calmly tell one of the nurses to go get a vacuum.  The nurse immediately rushed from the room.  After asking what was going on I was told that the baby's heart rate had dropped to 30 bpm and that they needed to get him out as soon as possible.  I didn't have time to process this or worry about what it might mean.  In what seemed like a matter of seconds the nurse was back with the vacuum, it was popped on Ethan's head and I was cut wide open with a huge episiotomy.

Ethan's poor little head was pretty sad looking after being vacuumed out

At 12:14 a.m. my mom walked into the room - right as he was pulled out and placed on my chest.  It was instant love having his warm soft little chest snuggled up against mine.  They asked who wanted to cut the cord and I volunteered for the job.  It was a little unorthodox but the whole thing makes Dustin nervous - like he might do it wrong - and I on the other hand was fascinated by it.  

6 lbs 15 oz, 19 in long - not bad for being early!

After being snatched away to be weighed and quickly returned we were able to enjoy some quality skin to skin time.  I don't think there's anything quite like those first moments after a baby is born and you are meeting each other for the first time.  It's an intensely spiritual experience.  You can almost feel the presence of angels that delivered the child from their arms into yours.  And looking at your brand new baby all you can see is absolute perfection and all the bright potential the future has in store for this precious little one in your arms.

Born right after midnight, this little guy is the best birthday present ever. And we now share a b-day!

Pregnancy

Now that getting pregnant was done, staying and being pregnant needed to be pulled off.  As soon as I got the positive pregnancy test I was on the phone with my doctor.  I was spotting and knew that I needed to be put on progesterone right away to keep from losing the pregnancy.  I learned that the hard way in a previous pregnancy which ended in miscarriage due to a subchorionic hemorrhage - basically a blood clot that forms between the uterine wall and the gestational sac.  This is a condition that I have had in all of my pregnancies and isn't a big deal as long as it is treated and monitored right away to keep it from getting too big and stripping the developing placenta away from the wall completely. 

4 months

After getting the hemorrhage under control I continued to be plagued with small complications throughout my pregnancy.  No heartbeat when there should have been one and a huge ovarian cyst in the first trimester, nausea and vomiting that lasted through my second trimester, and worries from measuring small in my third to name a few.  

In the waiting room at my 20 week ultrasound

At 28 weeks I ended up in the hospital in preterm labor and severe pain in my right side directly above my hip.  After doing a CT scan they detected the problem - a kidney infection.  They were able to stop the labor with a few shots (contractions were coming every minute and a half by that point) and they sent me home  with some antibiotics and an appointment with a urologist.  The urologist had more bad news- the pain wasn't going to go away.  After looking at the CT scan he said I had a condition called hydronephrosis.  Basically the baby growing inside me was taking up all the room and the tubes that drained my kidneys were being pinched shut.  He said I could tough it out and I would continue to feel as if I had permanent kidney stones.  Or I could undergo a surgery in which they would place stents in my ureters to keep them open and allow my kidneys to drain the way they are supposed to.  After many a google search and several prayers later I opted against the surgery.  Why undergo an optional surgery and potentially put my unborn child at risk?  I'm glad this is the decision I made.  After about a week the pain receded to a dull ache with the occasional sharp jab to my kidney when the babe would kick/move the wrong way. 

Seven months pregnant - taking Ella to see the movie Brave

From that point everything continued fairly smoothly.  I was enjoying being pregnant and preparing for the baby.  At one point my husband asked me if I wished that he were the one carrying the baby rather than me.  My answer was "no way!"  Even though being pregnant can be uncomfortable (and even downright miserable during those months of unrelenting nausea and vomiting) it is also one of the most amazing (and FUN!) things I am sure I will ever be blessed to experience.  What a marvelous feeling it is to have another human life growing inside of you.  And it is made all the more wonderful when you get to meet that little human for the first time.

With my in-laws 5 days before giving birth

Intro and Conception

Cranio Synostosis.  This is the diagnosis that my son was given at only a few days old.  It is the term that I have spent countless hours googling.  It is what inspired me to start this blog.  My hope is that by blogging about my experience with Cranio Synostosis I will be able to help someone else (up late at night when you know you should be sleeping, bloodshot eyes, 10 tabs open in your browser with various pictures, blogs, resources you have poured over) in the same way that reading about it from other moms has helped me.  I also hope to keep this uplifting (no sob blog here) while still real and therapeutic.

Ethan at 1 month

But there is so much more to Ethan's story than just his diagnosis.  Since this blog will also serve as my journal of sorts it will be about all things Ethan and not just about his cranio.  Thus we need to rewind a couple years.  It took us a long time to get pregnant with our first child, Ella, but when I went to an OB/GYN for help he put my on Clomid and BAM! after one round we were pregnant with her.  So when we decided we were ready for our second child the doc told us if I didn't conceive on our own in the first three months he would write me up another prescription for Clomid and BAM! I'd be pregnant again, right?  Nine months and six rounds of Clomid later I still wasn't pregnant and so my OB referred my husband and I over to a fertility specialist.  After a few tests the specialist told me my body needed a break from the Clomid (I guess it forces ovulation but it is really hard on the uterus) and to come back in a few months and we would try an IUI - Intrauterine Insemination.  After I had been off the Clomid for three months we were making plans for the IUI when I took a prenancy test and it was POSITIVE!  No drugs or medical help at all!  My body had done that all on it's own - what my fertility specialist termed a "spontaneous pregnancy".  Spontaneous?  It seemed like such a strange term since it is something we had been working towards for almost a year at that point (about half the time it took to get preggo with Ella).  Call it what you will we would take it!  

Big sister Ella making the announcement

I know we are super fortunate that our fertility issues were so mild.  Some couples struggle for years and go through many procedures to get just ONE child, and we were now going to have our SECOND.  I do believe that trying to get pregnant is incredibly emotional whether you try for one month or ten years.  Each month you go through an emotional roller coaster of excitement and hope, analyzing your body (am I nauseous? I must be pregnant. More tired than usual?  Bet I'm pregnant. Period is a day late - Pregnant for sure!) and the crushing disappointment with a negative pregnancy test or when your period does arrive.  Going through that process once is enough for anyone.  Going through it over and over again each month can be very trying to say the least. 

This has lead me to believe not only that every child is a miracle, but that every conception is one too.  My husband, Dustin, and I are certainly amazed with the little miracles we are blessed with.