Wednesday, December 9, 2015

Surgery day {November 19, 2015}

Caleb couldn't have anything to eat past 1:30am.  So I woke him up to feed him.  I am not sure I slept much after that until my alarm went off at 4:15am. Quite honestly, I'm not sure anyone slept well that night.

I got up and showered, put on make up and comfy clothes.  Caleb was restless and I felt so sad that I couldn't nurse him back to peaceful sleep.  We gathered bags and a baby and off we went.  Our arrival time was 5:30am and we were the first to check in.

A friend showed up at 5:40am in the waiting room.  He chatted with us while we waited and prayed for us right before we were called back. It was nice to have familiar faces and faithful prayers.  We walked back to pre-op where so many nurses and doctors came in and out.  The PA we saw the day before came in and it was nice to know she was on Caleb's side for surgery.  He still sounded and looked great, but we were waiting for the final "OK" from the anesthesiologist. 

Two other friends came by to pray and encourage us while we waited.  Time seemed to fly by and creep on all at once.  It was weird.  Caleb was in and out of sleep until about 7:15am.  The neurologist, Dr. Yaun, came by and checked in on Caleb {and us}.  She gave us a brief overview of what she wanted to do, the time it would take and to see if we had any more questions.  She's really so great. 

A few minutes late the anesthesiologist came by, checked Caleb out and gave us the overview of what she was going to do.  At that point, everything became heavy and real.  We changed Caleb into his surgery gown and the OR nurse came to get us.  I held him so close and so tight as we walked back to the holding room.  We took a few pictures with him, gave him as many hugs and kisses as we could and then she looked at me and said, "Okay.  Are you ready? Someone will come get you when he's done." And I handed my tiny baby over to her. Exactly at 7:30am.

I am not sure how I did it.  Now that I really think about it.  I suppose abundant grace? I just gave her my baby...knowing she was taking to surgery.  And she held him close, his head peering over her shoulder.  Forever burned in my memory is watching him, our eyes locked, walk away from me.

Patrick and I walked toward the waiting room.  Tears filling our eyes.  As we both were caught up in the emotion of the moment, we stopped and took a few breaths.  We grabbed some food and then parted ways.  Patrick was going to sit in the waiting room and I needed to go to the nursing moms room to pump.  While I was there Patrick got a call at 8:30 that they were starting surgery and that anesthesia  was done and went well.

I hurried back to the waiting room and was met with dear friends waiting with Patrick.  They brought treats and prayers and comfort.  I'm forever grateful for their kindness and the distraction they were to us. We got a call around 9:45 that surgery was almost done and that everything was going really great. We were so surprised by this because we were told that surgery would take anywhere from 2-3 hours and we would be separated from Caleb for 5-6 hours. Either way, we were so grateful.

We sat waiting and talking and watching the screen to tell us if he was moved from the OR to recovery.  From where I was sitting, I could see the hallway. I looked through the windows to see Dr. Yaun walking down the hallway into the waiting room.  She looked so content with a little hop in her step.  Surgeons are unique people ;) She smiled at us and pulled up a chair beside us.  She told us where she cut and how much she cut from the skull.  She told us how wonderfully Caleb did and how feisty he was coming out of anesthesia.  She brought, in a tiny plastic bag, the very small amount of hair she needed to cut.  It was so thoughtful of her. She talked and at one point I don't think I could hear her words, I smiled and took in the moment -- it was done.  She talked as if she were cutting fabric and preparing for a dress to be stitched. 

{A few highlights: He was a great patient and was flirting with all of the nurses in the OR/He didn't need a blood transfusion during surgery! But after surgery his blood was showing he was a little anemic, so they gave him about half of a pint of blood in recovery to help/She cut two parallel areas on both sides of the fused suture, two horizontal cuts on both sides of his head and two parallel, diagonal cuts on both sides of the back of his head.  I believe they were a little less than a centimeter wide cuts {removal of skull}/He didn't have any trouble with his oxygen.} God answered SO MANY prayers.

We exhaled deep sighs of relief and our bodies relaxed as the surgery was complete and our little baby was a champion! Of course he was! Of course! God was with him.  People were praying for these very things! 

Right at 11am, someone came to the waiting room and told me I could go back to recovery.  Only one parent was allowed at a time, we were told, so I went back first.  I brought the pumped milk incase he couldn't latch on.  This, my friends, was the moment I was most nervous about.  I wasn't sure what to expect.  What would he look like? How big would the incision/scar be?  Would be be bruised already? Swollen?  What if I couldn't look at him? Oh, I prayed so fervently that this moment would not be scary or hard, but sweet and tender. 

And it was. It was so very sweet.  Warm tears filled my eyes as I saw my baby boy. I barely recognized him! He was clean and crying.  In fact, I could hear him down the hall and I ran. I did. I ran to my baby until I got to the recovery rooms doors. He was a little pale and he was hooked up to so many wires.  They had just started his blood drip and the nurse was so kind and explained everything to me.  I asked a thousand questions. I held him in my arms and just looked at him, kissed him and tried to keep him calm.

Caleb came out of anesthesia fighting.  Everyone kept saying he was feisty and I laughed, thinking "Well, he has three older siblings!".  He was a strong and brave baby.  He wouldn't latch on to nurse right away, but after he calmed down a little he took a bottle.  Once he realized what he was doing, he didn't want the bottle and started nursing like a champ.  This was equally calming for both of us. He had some fluid build up on the back of his head.  It was normal and would reabsorb, we were told, in 6-8 weeks.  We called it the "water bed" and I could not touch it.  At all. 

I asked if Patrick could come back and the nurse was so kind to let him! We both stood there looking at this tiny boy.  He looked so much more like Benjamin AND Elise. His head was immediately different -- more round and chubby.  He would cry some and then relax.  Clearly, he was uncomfortable and in pain.  It was so hard to be helpless.

After about an hour in recovery, they moved us to the PICU.  The floor was quiet and the rooms were small. There was a rocking chair and a sink.  The nurses were great and so helpful.  I was so scared to hold Caleb {re: wires and water bed} and they helped me each time and encouraged me.  We had a hard time getting Caleb's pain under control, but once we did it was tolerable for everyone.  He had crying fits and his little voice was so hoarse from being intubated. It was heartbreaking. 

He was on a consistent dose of tylenol and we tried morphine, too.  That didn't seem to help.  But tried valium a little later and that worked like a charm! His body was able to relax and rest. He started eating a little more consistently and didn't seem as easily bothered. It was so nice to know what worked to manage pain.  

Dr. Yaun stopped by to check on Caleb and told us that she couldn't have asked for a better surgery.  She said, "You know those days when everything goes just how it's suppose to? That was today!" We prayed for that. And God gave that to us, to her. 

Friends were in and out and Patrick left the hospital to go home with the other kiddos around 6pm. It was just Caleb and I.  It wasn't relaxing because nurses came in every hour and when it would get close to medicine time, he would get restless and fussy.  My main concern was loving him and helping him.  Dr. Yaun told us that a mothers love is stronger than morphine -- and I really believe that now.  I sat in that rocking chair holding Caleb for hours through the evening and night. 

I fell asleep a few times and probably slept about two hours through the course of the night. I missed the dinner cut off from the cafeteria and ate an apple and a rice krispie treat for dinner.  It could have been worse.  There wasn't a parent restroom with the room, so I had to go down the hall to use the bathroom.  BUT I rarely wanted to leave Caleb, so I usually went when the nurse had to do a more thorough and longer check. 

All in all, it was a long and hard day.  There's no way around it. Prayers were answered, though.  Hope was strong, peace was surrounding us.  God's grace was sufficient and we all made it.  That day changed me.  I would never want anyone to walk through this, through watching your child have surgery and suffer -- but I would never, ever change this.  God gave us this trial to walk through and I won't ever question His plan.  I am a different woman because of this -- praise God. 

PS. SO many pictures. 

In pre-op, talking to nurses and doctors galore.


One last side shot!

Sleepy baby.

Hospital gown.

Quick family pic.

Saying goodbye with hugs and kisses. In the holding room.

Love and snuggles from daddy.  But a good shot of the top of his head {ridge/length}

Watching the screen waiting to see Caleb's pin number show up in recovery! He was 3371 and in recovery in this picture! 

My very first look at him.

Holding him as soon as I got back to recovery.

Incision immediately after surgery.

the blood machine.

A restful moment.

Accidentally touching his water bed. 

He already looked SO different!

Patrick holding him for the first time. 

Closer picture of the incision.

Taking a bottle and eyes open! {Patrick is holding him, I'm giving him the bottle}

Cozy and ready to move to the PICU.



Eyes open once we were in the PICU.



So much pain. So much fussiness. SO much sadness.

Patrick trying to comfort Caleb while they were doing a blood draw.

More checking and poking. 

Resting in my arms. I didn't mind sitting like this one bit.

SO exhausted.  He was pushed to every limit possible. 

In my arms, again.

Big yawn.

My view of his bed from the rocker. Taking in a few quiet moments in the middle of the night...

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