3 Week Post-Surgery Update

One of these days I’ll master the art of short updates and publishing them in a timely manner (yeah right), but until then (never), I apologize. If you want the cliff notes version, you can just read the first line of the next paragraph 🙂

This past week-and-a-half was another roller coaster ride, but overall, things are improving. Sunday and Monday (12/1 and 12/2), were equally as intense as the previous days, with Evie’s nap strike continuing and crying for most of the day. On Tuesday, we went to her post-op appointment with her surgeon, and that marked a turning point. Dr. Yokoo said her lip is looking great and healing as it should, so that was good news. Since that appointment, we have been applying vaseline to her scar and massaging it throughout the day, so it will continue to heal well. Dr. Yokoo also instructed us to pull down on her lip periodically since it will naturally pull up, but Evie is adamantly opposed to such torture (go figure), so we have all but abandoned that. As soon as all her stitches fall out (there’s still a few stubborn ones), we’ll apply silicone gel sheets to her lip over the next few months, to assist with healing as well.

The even better news we received at that appointment, was permission to ditch the much-loathed (by all!) arm restraints. Sean thinks we should keep them to show her, but I just want to burn them. Evie was obviously pleased by this, and immediately stuck her fingers in her mouth and began sucking, which made her a happy girl. On our way back to the car, she spontaneously laughed, and we’re pretty positive it was an expression of uncontainable glee over her regained freedom!

During the appointment, we also spoke with Dr. Yokoo at length about her sleeping difficulties and fussiness, and she thought Evie is simply reacting to her world getting turned upside down and dealing with a traumatic event, is uncomfortable, and just plain mad/upset. She did not think it could be due to any lingering neurological effects of the drugs or an unknown medical issue (which has since been confirmed by Evie’s anesthesiologist, pediatrician, and my uncle who is a retired psychiatrist…I like to cover my bases :)). Dr. Yokoo said Evie’s reaction to surgery is unusual, but not rare (although it is more common after cleft palate repair, not lip repair). She also speculated that Evie was highly irritated by the arm restraints (she had just learned to roll before surgery, and wasn’t able to for almost two weeks), and Dr. Yokoo also thought she was hampered by the inability to soothe herself in the ways she was accustomed to (i.e. sucking on her hands/using a pacifier). I really didn’t think Evie was old enough to be capable of such complex emotions, but I guess I underestimated her emotional maturity! 😉 Dr. Yokoo did not think her disposition was anything we needed to worry about, and thought it would pass within a couple of weeks.

The remainder of Tuesday was a bit better than the previous days since Evie actually fell asleep in the car to and from the appointment in Richmond, but still difficult with fussiness. Even though she had use of her arms back, she had lost her ability to roll, which really frustrated her. It was really kind of sad that she had regressed developmentally due to the surgery. She has since relearned how to roll – which is a very good thing – since it is a particularly useful skill in this household to successfully dodge flying objects hurled by big brother!

Wednesday was a day of blessings. When we woke up, our heater, (which Sean had been climbing into the attic to restart manually on a near daily basis), finally stopped working altogether. We had already ordered the broken part, but it wasn’t set to arrive until Friday. And lucky us, a cold front was rolling in that day, and the temperature dropped to 26 degrees that night. Sean tried his best to fix it, but to no avail. We began praying that God would fix it. And praying and praying. After that, Sean decided to try one last-ditch effort and MacGyver’ed it – bypassing the electronics and safety shut-downs – and it worked! Not only did it work on Wednesday, but it kept running until we received the replacement part on Friday, and Sean was able to fully fix it. Praise Jehovah Jireh (the Lord will provide)!

That afternoon, Sean had to go back to work…which I was dreading. At that point, Evie had not taken a nap in an entire week that was not facilitated by a car ride, being held/rocked, or using me as a human pacifier (and even in these cases, she only slept for 45 minutes, max). I knew it was not practical to continue these nap-inducing tactics once I was on my own with both kiddos, so once again, I prayed and asked God to help her nap on her own. I laid her in the swing, and she fell asleep…and stayed asleep for 2 hours! It was an even bigger miracle than the heater working! 🙂 Her afternoon nap didn’t go as well, but I was so stoked on the first nap, I didn’t care. A friend also came to help that day, and we were surprised with not just one, but two meals that night, which was amazing!

Now Thursday…well, Thursday was a doozy. Evie had become hoarse on the previous Sunday evening, and I figured it was due to screaming for four days non-stop. However, her voice was still hoarse by Wednesday afternoon, even though she had cried less on Tuesday and Wednesday (and it really seemed to me her voice should have recovered by then, if the hoarseness was due to voice overuse). I began wondering if Evie was sick (even though she was not exhibiting any sick symptoms), so I took her to the pediatrician Thursday morning. The doctor (not her usual one), checked her from head to toe, and determined she was not sick – her lungs, throat, and ears looked fine. She thought the hoarseness could be due to Evie’s crying, or possibly due to her vocal cords getting damaged from intubation during surgery. She told me not to worry about it unless it wasn’t going away, because that could mean Evie had polyps on her vocal cords. I had no idea what “polyps” were (hopefully I’m not the only one here), so I pressed her for more information. She began describing what they are (small growths), which sounded scary enough to me, and stopped mid-sentence to say – “I shouldn’t have said that…I don’t know why I said that.” For any doctor or doctor-in-training reading this, don’t ever say that to a patient or their parent. Just don’t. Sometimes ignorance really is bliss!

It was difficult to concentrate after that, because I couldn’t stop thinking about the scary growths Evie might have on her vocal cords. I fought back tears as I left, thinking to myself – “I just can’t handle one more thing right now.” When I got home, I researched all about vocal cord polyps and how they are fixed…which is via surgery. At this moment in time, the term surgery is a curse word to me, and I think I just about had a heart attack. My mother-in-law was at my house watching Caleb, and when she asked how the appointment went, I pretty much lost it. I just felt so beat up by the previous two weeks, dealing with one issue after another, that it was the proverbial straw that broke the camel’s back. These so-called “polyps” weren’t even a for sure thing, but I couldn’t even handle the possibility of them.

Searching for answers as to the cause of her hoarseness, I emailed the anesthesiologist who participated in Evie’s surgery to ask if her vocal cords could have been damaged due to intubation (a known risk). When Sean came home from work, I told him what the pediatrician had said, (which he took really well), and we prayed together for Evie’s hoarseness to resolve itself. I received an email back from the anesthesiologist just a few hours after messaging her (pretty amazing!), and she said she did not think it was due to the intubation, because the timing was not right (the hoarseness would have shown up earlier), and thought it was more likely due to Evie’s obscene amount of crying. After putting more rational thought into it, what the anesthesiologist said made a lot of sense, and I agreed with her. I was relieved the hoarseness was not due to intubation, but still concerned that it might not be temporary, and what that would mean. Exhausted, and feeling like I got hit by a bus due to a day’s worth of extreme muscle tension, I collapsed into bed at 8 pm with Evie, which is probably the earliest I have gone to bed since I was 10. What a day.

After more prayer and some decent rest (I say decent, because I probably could have slept for 24 hours straight), I felt better. It really is amazing how a new day can bring new perspective. I decided to give it over to God, and not worry about it. It took longer than it should have to arrive there, but I know this is a growth area for me, and longer is better than not at all. So long story long, I calmed down about it, and Evie’s voice is better now (the hoarseness comes and goes depending on how much she’s been crying, which tells me it is definitely a temporary condition due to excessive crying as I had originally suspected, and truly nothing to be concerned about). And even if it had turned out that she did have polyps and needed surgery, I know it wouldn’t be the worst thing in the world.

Bringing us to the present, the past week or so has been about the same in terms of Evie’s behavior. She is still experiencing a lot of difficulty sleeping and is fussy often, but is definitely screaming much less than the five days prior (thank the good Lord)!! Fortunately, last Friday brought an epiphany for me. When Evie first began her epic freak-out, I had emailed my cousin to ask if she had experienced anything similar with her daughter after the surgeries her daughter had early on in life. She said no, but thought what I was describing didn’t sound too different from how all her kids acted around four months of age. What she said got me thinking back to when Caleb was 4 months old, (which strangely feels like an eternity ago), and I vaguely recalled that he also struggled with napping and was pretty fussy at 4 months too.

Up until that point, I had only considered that Evie’s disposition could be related to the surgery, and had not considered that her developmental age could be a factor. Rather than googling “fussiness after surgery” and the like, I googled “4 month sleep problems.” I came across this article about 4 month sleep regression, and as I read it, it sounded eerily familiar. Know why? Because I realized I read that same article when Caleb was 4 months old, and I was trying to figure out what was wrong with him – haha! Darn mom-affected amnesia gets me every time – I could swear the part of my brain responsible for memories was irreversibly damaged when I gave birth to Caleb. Granted, I don’t think his behavior at 4 months was quite as ridiculous, which is probably why I don’t remember it as well either.

I had Sean read the article, and after discussing it more, we theorized that what we have on our hands is the result of a perfect storm. We think Evie’s experience with a traumatic event (surgery, being drugged, and all the issues that followed with dehydration and constipation), mixed with her developmental age of 4 months, created a monster. Lol! Just kidding. Not a monster…just a very irritable, tired, confused, upset, and frustrated little girl. Poor baby 🙁

This breakthrough has been a relief to me, because I’m no longer wondering if she’s suffering from PTSD, or if the surgery provoked multiple personality disorder in her – haha! Obviously I’m exaggerating, but I really was concerned that something was seriously wrong by the way she was acting and how many weeks it was lasting, and now I believe her crazy disposition at the moment is normal, albeit elevated due to atypical circumstances. As the surgery gets further behind us and she simultaneously grows older, I know things will get better and better. I mean, they have to…I really don’t think I’ll be ok with her sleeping in our bed until she’s 18 😉 So at the moment, it is still difficult – and I even shed a few tears again yesterday (during the whole 15 minutes I had to myself the entire day), because I think my kiddos were in cahoots to see who could break me first. Thankfully, after some prayer, a refreshing shower, and Dad to the rescue, I was (and am) feeling optimistic. But let’s just be honest, I am looking forward to moving past this stage and restoring some semblance of normalcy again 🙂

Photos taken last Thursday (12/5), 2 Weeks Post-Op:

 

Photos taken yesterday (12/10):

 

 

Photos taken this morning at 3 Weeks Post-Op:

Next post:

1 Month Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures