Our Surgery Journey

This is one of those life events that, although it's been super hard, I want to remember all of the details and remember God's faithfulness to us in the midst of it all.  Also, it has been great, great, great having my parents as a resource who went through the exact same thing with me.  They have eased my fears and made me feel much more confident in caring for Ian through this.  If I can remember how things went for us and how I felt throughout this journey, then hopefully I can do the same for someone else someday.  I plan on adding to the post when all is said and done.

 

 

Because I had a cleft palate as a baby, and because it can be genetic, with our first two boys, we had a specialist look at each of their palates in a detailed ultrasound to see if they could tell if they had the same.  Clearly both of them were born without it.  Fast forward to Ian.  Being our third baby we didn't feel a strong need to have him checked out in utero by a specialist.  Even if they were able to tell if he had a cleft, there's nothing you can do beforehand besides prepare yourself mentally, which wouldn't have been all bad.  Interestingly enough, my midwife also had a cleft palate as a baby and together we just decided it really isn't all that necessary to know beforehand.  So we didn't.  I think that was God's way of protecting my heart.

 

The night he was born, everything happened so quickly and Scott had the falling incident so it was all very much a blur.  My mom and Scott's mom were in the room with me when Ian was born since Scott was not able to be there.  It wasn't my original plan, and I could probably be mortified if I let myself think about it too much, but it turned out to be quite a blessing.  They had to whisk Ian away because there was meconium in the fluid as he was born.  Once they got him all cleaned up and checked out, the doctor next to me was talking to the baby nurses across the room attempting to be discreet about the subject of bringing him over to me to nurse.  I thought it was odd but didn't think a whole lot about it.  But then I think I overheard someone say something about Ian having a cleft palate and potentially not being able to nurse.  Mama was there by me and was the one who told me, yes indeed, he did have a cleft palate. 

 

I tell people it was just one of those mama moments, like when a child gets hurt or something, where you just rise up and take care of it because it's just what you need to do.  There's no sense in wallowing and crying about it.  You just need to take care of the baby and do what needs to be done.

 

I tried all night to get him to nurse (and several times in the following weeks!)  The pediatric resident and lactation consultant were both hopeful that he would be able to.  But he just never could get good enough suction to latch.  He was born at 11:50 pm, and they said if he didn't nurse by 6 am then we would need to supplement him.  He didn't, so we did.

 

He was fed by an NG tube for the first week of his life while he figured out how to drink from a bottle.  Once he figured out the bottle, he was good to go and never looked back.

 

 

He only had a cleft of the soft palate way in the back of the mouth.  Mine was both the hard and soft palates.  Thankfully neither of us had the lip.  Dr. Yu said about 1 in 700 babies has some sort of cleft at birth.  When there is a first degree relative with one, it jumps to 1 in 20.  Many, many times I have sat with Ian in our glider and thought, "Seriously, what are the odds?!?  Actually, they're pretty good, but seriously!  Really??"

 

For the night before, I was told to wake Ian 6.5 hours before we needed to arrive at the hospital and feed him one last good feeding.  They didn't understand that waking him up like that only makes him wake up even earlier in the morning.  I was envisioning a baby waking early and crying non-stop from hunger until they put him under.  I may, or may not, have a problem with being a bit extreme and jumping to a worst case scenario in my head.  On top of that, he got a cold a few days before the surgery so he was waking up multiple times in the night, and feeding is always my go-to method to get a baby back to sleep in the night.  He ended up doing great though.  He woke up on his own about 12:30.  I was planning to get him up at 1:00, so I thought 30 minutes shouldn't make a huge difference.  He took a full bottle, went back to sleep and didn't wake up again until it was time to leave for the hospital.  I was so thankful.  Mama and I watched him on the monitor when he woke up, playing with his toes and cackling to himself.  He had no clue what was about to happen to him.

 



 

He did so great, and only got a little fussy a few times while we were waiting to sign all of our consent forms, but was easily consolable.  He enjoyed seeing all the of the doctors and nurses.

 

It took about 2.5 hours to complete the repair.  Then he had his circumcision done.  Followed by tubes in his ears and an hour long hearing test.  They began the surgery at 9:00 and he wasn't finished until close to 2:00, I think.

 

When they brought us back to the recovery area my heart just broke into a million pieces.  Seeing my baby all swollen from being worked on and bloody and trying to wake up not knowing what in the world happened to him was so hard.

 

The nurse encouraged me to hold him.  As he was trying to wake up, I don't think I've ever seen him so mad.  He had 4 or 5 episodes of just being so completely m.a.d.  And I didn't know what to do with it.  I remember looking up at the nurse who was with us and saying in tears, "Am I just supposed to let him cry like this?!?"  I mean, he was arching his back, thrashing all over the place, and I felt like there's something I should have been able to do to make it better.  I don't remember the nurse responding at all.  But then I remembered how two dear friends of mine, who are about to finish nursing school, had told me beforehand that it was normal for babies to be fussy coming out of anesthesia. So then I felt a little less helpless.  Oh, and his cry was so pitiful.  Since the back of his mouth was worked on, his voice was hoarse.  It was so, so sad.

 

                                     

 

They took him to his room pretty quickly and we began the road to recovery.  He didn't eat at all on Tuesday.  We survived that night with morphine and little sleep.  Thankfully I was so tired that the 1.5 hours I did sleep felt like much longer.

 

When Dr. Yu came to check on him Wednesday morning he told me it would get better.  I told him he would need to tell me that often.  And then truly, each time he came to check on Ian after that he told me again that it would get better.  In fact, lots of people told me that.  I needed to hear it. 

 

I had been under the impression that he would need to be eating a full bottle, which for him was 4-6 oz, before we could go home.  He was not anywhere even close to that.  Late on Wednesday Dr. Yu and the nurse encouraged us in the fact that most babies do better at home.  It will get better.  He was taking in close to the equivalent of an ounce an hour at that point, which is really what they wanted.  So we decided we could feel comfortable enough to go home that evening. 

 

Again having my parents tell me their story was so wonderful!  Hearing that when they brought me home I was not eating much either made me feel like maybe Ian wasn't so unique in that.  Having Mama tell me how terrified she was and thinking she was going to have to feed me with a syringe for the rest of my life validated the fact that I had had that EXACT SAME thought about Ian too.  Again, maybe I can be extreme in my thoughts sometimes. :)

 

He loved playing with his "Rudolph toe"

 

When we got home there was just enough time for him to reacquaint himself with the house and enjoy playing in a more comfy environment for a bit.  I got him ready for bed, gave him the trusty Tylenol dose, and got him to eat only a little under 2 oz.  I didn't have super high expectations for him going right to sleep for the night because of the pain and things just being different now.  However, he surprised me once again as babies like to do.  He looked up at his name sign on the wall.  If he could have sighed a big sigh of relief I think he would've.  He knew he was home and back in his own bed.  He went right to sleep without a peep.  If Scott and I didn't work so hard to train our babies to fall asleep on their own, I know it would not have been that easy for us.  But in fact, he wanted to just be put in his bed and be able to drift off to sleep in his own space. 

 

 

Those first few days we had to fight Ian a lot to get him to eat.  He usually wouldn't take more than an ounce at a time.  We used a lot of distractionary tactics in those early days to get him to focus on something other than the fact he was hurting while trying to eat.  We went through an entire bottle of bubbles in about 3 days.  Micaiah liked the job of blowing bubbles for Ian while I tried to feed him.  We used a burning candle a good bit.  He loves staring at those.  Even in the middle of the night when he would wake...I'd give him his Tylenol and then we'd plop down in the living room in front of a candle and try to get him to eat even just .5 oz I'd be satisfied with.

 

Early Thursday morning Scott got up with him around 3:30.  When I woke up for the day a few hours later and saw that Scott had written down on our log that Ian had eaten 3.5 oz for him, I knew that maybe we were beginning to turn  a corner.

 

Then Friday came.  Before we had left the hospital, the nurse had told us that in her experience day 3 after any surgery is always the hardest.  At first I didn't like that she said that because I thought I'd be expecting it and thinking things were worse even if they really weren't.  But in the end I'm glad she told us that because really, things were worse and it made us feel much better about it. 

 

By the way, thankfully he was napping perfectly ever since we got home even though he wasn't eating much!

 

Friday night I was getting him ready for bed.  Scott had the big boys out at the grocery store, so the house was nice and quiet.  As I was fixing his bottle, I thought I'd go ahead and fix a whole 4 oz and have high expectations for him.  I could always save what he didn't take.  Before sitting down in the glider I had the idea to hook his mobile to the outside of  his crib so that he could focus on it while trying to eat.  It worked!  He kept eating and I kept on squeezing (we have bottles that squeeze while he's healing so that it makes it easier for him to get the milk out).  I poured some more into his bottle.  He kept sucking and I kept squeezing.  He finished off the 4 oz, so I held my breath and went to the kitchen to fix more.  He kept on and I kept on.  My hand was getting sore from squeezing, but Ian said I couldn't complain about my hand being a little bit sore.  :)  The boy took 6.5 ounces!  I was floored.

Love from big brother in the hospital

But then Saturday he didn't eat anything until 1:00 that afternoon.  Interestingly enough I wasn't concerned about it.  God had proven to us that He would sustain Ian and we didn't need to worry.  When he started eating again Saturday afternoon, he just increased more and more.  By Monday he was consistently eating 4-5 oz at a time and was back on his pre-surgery eating and sleeping routine.

 

Speaking of his routine, I was a bit worried that the routine I had worked so hard for over the last 5 months was all going to go to shambles.  But truly, he bounced right back.  And in fact, I think it has really served to make things better, and even easier in some ways, for us post surgery.

 

Now it has been almost two weeks.  We go back to see Dr. Yu on Tuesday to double check everything and he said that usually the arm restraints can come off at that point.  He'll go again 4 weeks after that.  From there he should be home free. 

 

He's not super frustrated with the "bats" on his arms, but he will be glad for them to come off.  He smiles at me huge when I take them off to change his clothes.  And he fusses for half a second when I go to put them back on.  But then he just moves on with life like a champ.  When I had arm restraints as a baby, my brother thought they looked like baseball bats, so he called them bats.  Growing up, whenever I would look at the pictures or we would talk about that time of life, we called them bats.  So that's what I've always known them as.  So Ian's are bats too.  At least Ian can use his fingers.

 

Me and Daddy

Way back when

So happy to be home and getting back to normal!