Year: 2013

The morning of Evie’s surgery was dark, cold, and rainy. She was required to fast four hours prior to check-in, so I broke a cardinal parenting rule and woke a sleeping baby at 3 am to nurse one last time. I fell back in bed at 3:30, and woke again at 4:45. Sean and I fumbled to get dressed and gathered some last-minute items, then were off to Oakland Kaiser hospital at 5:30 am. We were silent as we drove along in the dark, and my thoughts began to drift to irrational worst-case scenarios. I finally broke the silence with: “what if Evie dies today?” Sean quickly replied: “She’s not going to die today. Everything will be fine.”

There was less traffic than anticipated on the drive there, so we arrived at the hospital early. This was a good thing, since we weren’t sure where we were going. Just as we left cover of the parking garage, we realized we had conveniently left our umbrella in the car. A moment very similar to this, then ensued:

So we forged ahead, and I’m sure we were quite the sight as we jogged towards the hospital – toting three large bags and a baby in tow. After waiting at the longest cross-walk in all of history, we eventually made it into the hospital only slightly wet. We found the ambulatory surgery unit, signed in, and found a seat in the packed, dingy waiting room. We drank some coffee and attempted to relax (ha!), when a woman struck up conversation with us. (Not that this was a bad thing, I’m just not typically a lively conversationalist at 7 in the morning). She asked what everyone *always* asks us – “is she your first?” I guess people assume she must be, since I am informed ad nauseam I don’t look a day past 16. She then recounted an entire Modern Family episode – I really can’t remember why – and we smiled and nodded, smiled and nodded.

After what felt like an eternity, we were summoned to the check-in office. We signed a bunch of paperwork acknowledging possibility of death, dismemberment, irreversible damage, lingering PTSD, etc. etc. etc., and then we were off to weigh Evie and change her into the 10-sizes-too-big hospital-issued gown. She weighed 12 lbs 5 oz, which placed her in the 20th percentile, down from the 90th percentile at birth (I unequivocally blame her birth weight on the daily half-baked chocolate chip cookies I consumed in abnormally large quantities while pregnant, haha).

Next, we transferred to a pre-op area, and answered a million questions. My personal favorites: “does she smoke?”, “does she drink alcohol?”, and “any custody issues?” After the long interview, we waited for her plastic surgeon and anesthesiologist to come brief us. Evie was surprisingly calm during the wait, considering she hadn’t nursed in five hours and I imagine was very hungry. Even though Evie couldn’t use words, she’s a smart girl and figured out another way to communicate exactly what she thought about the impending ordeal:

Eventually, Dr. Yokoo and the anesthesiologist came by to ask if we had any questions and to provide more information. The anesthesiologist assured us it was more likely for us to have been in a car accident on the drive to the hospital than for something to go wrong with anesthesia, so that made me feel better (except then I worried about crashing on the way home). They left to prepare for Evie’s surgery, and in the meantime, she passed out:

A short while later, a nurse came and escorted us to the double doors leading into the hallway of the operating rooms. We each gave Evie one last kiss and squeeze and said goodbye. Emotionally, we had been ok up until that point, but as we watched the doors close and little Evie disappear down the hallway, a switch flipped in mere seconds and the tears instantly welled up in our eyes. I can’t explain why, it was just really distressing to watch a stranger carry away our baby girl. Shoot, if it was that traumatic to release a child for a relatively non life-threatening surgery, I hope to never know what it feels like for one that is. Ugh, no parent should ever EVER have to go through that!!!

We sat down to pray together and regain our composure, then wandered aimlessly up and down the same hallway for five minutes, as we attempted to figure out how to get to the hospital’s lobby. We must have looked highly suspicious to anyone watching on a security cam – haha! We eventually made it, dropped off our bags, and I immediately left to find the hospital’s lactation room because it was time to pump.

I was informed the room was on the administrative 12th floor, but after walking the hallways multiple times, I could not find it anywhere. I stopped to ask a man who worked at the hospital where it was, and he said he didn’t think they had one. He flagged down another man, who flagged down another man, and all three stared at me blankly while I explained that I was searching for the lactation room. The three adamantly agreed one did not exist, and boisterously shared a good laugh about how absurd that would be. They eventually pulled themselves together long enough to suggest I try the labor and delivery floor. Good thing I’m not easily embarrassed by awkward situations, because I probably would have melted into the floor.

In the nick of time, a woman was walking by who must have heard our conversation and scolded them, snapping: “state law requires every workplace to provide a room for breastfeeding mothers to pump…it’s on the 11th floor.” She rolled her eyes, grabbed my arm, and took me down a flight of stairs and showed me the room. She asked if I worked at the hospital, and I said no, I was there because my 3-month-old daughter was having a cleft lip repair. I think she could sense I might burst into tears at any moment, so she pulled me in for a big bear hug and gave me her phone number in case I needed anything. I think she might have been an angel…a big, sassy angel 😉

After my pumping adventure, I returned to the lobby, and Sean and I waited together for the remaining 2 hours. While we waited, we talked on the phone with Caleb and Nana, which was really nice because it got our mind off the surgery for a little. Caleb was having a blast with Nana – splashing in puddles and getting really muddy…pretty typical 🙂 There was another family waiting next to us who we had seen in the surgery waiting room upstairs. From what we gathered, their young son (maybe 7 or 8 years?) was undergoing brain surgery…a 24-hour operation. I really felt for them.

I kept anxiously looking at the clock, and just before noon, a messenger came over to inform us Evie’s surgery was finished, and we could go up to see her. When we walked into the large recovery room with multiple beds, I could hear Evie crying. My heart skipped a few beats, and I quickened my pace. I had expected her to wake from the anesthesia groggy and lethargic (not upset), so I was concerned. When we arrived at her side, I barely heard Dr. Yokoo say the operation had gone well, before the small crowd of medical professionals gathered by her crib were all telling me she was hungry and wanted to eat. Everything was a blur after that as I jumped into action – I quickly sat down, whipped out the goods (so much for privacy!), and fought with all the tubes and cords attached to her as I tried to maneuver her into the correct position.

What resulted next was so sad and pathetic, it made me tear up again. Evie was obviously starving, but because her surgeon gave her mouth a nerve block, she couldn’t close her lips to latch on, and her tongue was completely numb as well. She kept trying and just couldn’t do it, making her increasingly frustrated, and crying harder and harder. I felt so powerless to help her 🙁

It was obvious that Evie was not capable of breastfeeding yet, so we retrieved the milk I pumped earlier and began syringe feeding her (i.e. basically squirting milk down her throat). Once we did that, she calmed down a bit, which was a huge relief. Since she didn’t eat well right off the bat, we were transferred to the pediatrics floor, in case we needed to stay overnight.

When we arrived at our shared room, there was already two women there with a toddler boy, who appeared to have been there awhile. As we situated ourselves, a doctor walked in to talk to them, and the first thing I heard out of his mouth was: “your son’s rare infection disease…” Wait, WHAT!?!?! I literally froze in place, and thought: “ummm, should we be sharing a room with this boy??” It would seem I do not have the best of luck with shared hospital rooms, haha!

As it turned out, the boy had a surgery and the wound got infected, but it wasn’t contagious. It was actually a really sad situation – he was obviously in a lot of pain from all his groans and cries, he also had down syndrome, and his mother was quite belligerent with the medical professionals who came in and out, and the other woman in the room who was the boy’s grandmother. We really didn’t have to think long about whether we wanted to stay the night or not! :/

Over the next few hours, we syringe-fed Evie nearly continuously, and she took 5 ounces which was commendable. Soon after we had arrived at the pediatrics room, I needed to pump again, so I hopped up on the middle bed right next to her crib, since there was limited seating in the room. Evie’s nurse had left the room, and when she returned I was seriously reprimanded for sitting on a “clean” bed, which she lamented would now need to be changed. Geesh, sorry…and thanks for the heads up!

After a few hours in the recovery room, I attempted to nurse Evie again, and this time she did much better. The nerve block had worn off just enough to regain function of her mouth/lips/tongue, but was still keeping her pain mostly at bay. It was slow going, but I was encouraged she was able to breastfeed at all. Since Evie did a decent job nursing, her nurse decided she could be discharged. By this point we were exhausted and ready to go home, so we were happy to receive this news.

We picked up her medicine in the pharmacy, and left the hospital. Predictably, we got lost and couldn’t figure out where we parked (I think we must be directionally challenged), so we walked in a circle around the hospital until we finally found it (this time, hauling 5 bags and a baby)! Sweating bullets, we loaded up the car, and as we were leaving the parking garage, we got stuck at the automated parking machine because it wouldn’t accept our ticket. We motioned for every car behind us to go around, backed up, and re-parked so Sean could go back in the building to get help from someone. I really think we should have our own reality TV show…it would be awesome. Just kidding, it would actually be super boring.

We eventually made it home after a delightful trip in rush-hour traffic and a record-breaking wait at Chipotle, and then the real fun began…

Next post:

First Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Life is finally returning to a manageable state! Evie still isn’t napping well and is fussy often, but I think this is more a function of her age, than anything surgery-related at this point. In the last week or so I began sleep training, because I decided enough time had passed since the surgery and she is now developmentally old enough for it. I’m sure those of you without kids are thinking: “what? you have to train a baby to sleep??” Yep, those little stinkers don’t come pre-trained to do anything…except maybe how to drive their parents mad 🙂 Essentially, sleep training is allowing her to “cry it out,” and helping her learn how to self-soothe and get to sleep on her own (and back to sleep when she stirs), without my help. I’ll be honest, sleep training is probably my least favorite part of parenting (that I’ve come across thus far). Listening to a baby cry is the worst kind of torture for me…I would take Caleb’s shenanigans any day over listening to her cry, no contest. However, I do think the cry-it-out method is the best tactic (especially with two kids…is anything else even practical)?? I hate doing it, but I know it’s best for her (and us) in the long run.

So all in all, things are much better than they were. I’m glad Evie won’t remember any of this nightmare, because I think Sean and I will always have lingering PTSD from the experience!! (Speaking of nightmares, I actually had one last night about the whole ordeal)! Thankfully, the worst is behind us, and life is “normalizing.” I will still write a post about the day of her surgery, but the following is a hodgepodge of final thoughts about the experience, that I haven’t yet expressed:

I wish the operation was performed earlier in her life – closer to when she was 10-weeks-old, which is a standard age for lip repair. Or at the very least, sooner (it was originally scheduled for two weeks prior, when she was 14 weeks). I think the surgery wouldn’t have upset her so much when she was less cognitively developed, aware of her surroundings, and mobile (i.e. hadn’t begun rolling yet).

Sean and I have been speculating that Evie’s strong emotional reaction to her surgery may be an indicator of what her personality will be like. I’m wondering if she will be a sensitive girl, who appreciates routine and predictability, and has difficulty adjusting and adapting to new situations. Or perhaps she will struggle with anxiety – which would not be surprising – because the apple never falls far from the tree 🙂 I guess we will have to wait and see if our inklings are correct!

If we could rewind time and do it all over again, we would have administered her medication very differently. She was on the Tylenol w/codeine for 5 days, and we should have only given it for a day or two at most, and then switched to alternating between Ibuprofen and regular Tylenol. In the ER, we were instructed to take her off the Tylenol w/codeine completely (without substituting regular Tylenol), but the Ibuprofen alone was clearly not enough to manage her pain, which is why we put her back on the Tyco. In retrospect, though, I think regular Tylenol and Ibuprofen would have been sufficient. This way, we could have avoided the whole constipation debacle, and she wouldn’t have been so zombified for as long as she was.

Finally, we want to thank our family and friends who prayed, helped with Caleb, and brought meals, coffee, treats, and care packages. The first 3 weeks post-surgery easily ranks in the top five most difficult experiences in my life, and you were a lifeline for us. I really don’t think we could have survived without you, and we are SO grateful for your love and support. We hope we can bless you in return in the future when you find yourselves in a season of need.Thank you, thank you, thank you!!!

Photos taken this morning:

Previous posts:

Evie’s Surgery Day Recap
First Day Post-Surgery Update
Second Day Post-Surgery Update
Third Day Post-Surgery Update
Fourth Day Post-Surgery Update
Fifth Day Post-Surgery Update
Days 6-10 Post-Surgery Update
3 Week Post-Surgery Update
1 Month Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Last night, we managed to get out of the house and go to the Christmas worship night at church. We nearly aborted mission at the last-minute, because I knew an event like this would be really difficult with the kiddos. We decided to push through and go, because it is the only church-wide event all year (that I’m aware of), that children are allowed to attend, and I really wanted Caleb to experience worship as a church community. Sean front-packed Evie, and she did better than expected because she was mesmerized by the lights and sounds, but Caleb was as crazy as anticipated 🙂 I spent the first 30 minutes chasing him as he ran down rows of chairs, dancing with him in the back, and full-body tackling him before he could run up the stairs into the stadium seating. (I was sorely mistaken when I chose to take Caleb, thinking he would be easier on me physically than holding Evie the entire time – ha)!  I contemplated leaving with him on several occasions, but I really didn’t want to, since 1. It had been a month-and-a-half since we had gone to church due to Evie’s surgery and I really missed worship, and 2. I didn’t want to take away a unique opportunity for Caleb to experience God.

Our friend Becky was singing in the choir and Caleb wanted to see her, so I decided to take him up closer to the stage (I know…a highly risky move). I noticed some empty seats in the front row on the far right side (I thought he might be more engaged if we were closer to the action), so I sat down with him and bear-hugged him so he couldn’t escape for half the time, and jumped him up and down on my legs the other half (not so easy anymore at 2.64 years). It was exhausting, I was obviously more focused on keeping him under control than singing, and I kept wondering if he was bothering other people and making it difficult for them to worship.

After each song (and even during songs), Caleb clapped loudly and woo-hooed in the highest-pitched woo-hoo I’ve ever heard…it was really quite impressive (it was like a 13-year-old girl at a Justin Bieber concert, but higher…back me up on this one, Bauer’s). He also kept turning around to loudly exclaim: “mama, we’re saying hallelujah!” After each disruption, I half-smiled nervously, glanced around to see if anyone noticed (they did), and sternly whispered to him – “Caleb, please stop [fill in the blank].” But in the midst of the chaos, God spoke to me through scripture. He said – “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven” (Matthew 19:14). After all, we were there to celebrate BABY Jesus. I also felt Him impress upon me: Melissa, I know your attention is split and you can’t quietly focus, reflect, and worship Me like you once could before children, but I accept your worship just the same. You are doing your best to give what you have to Me, and I am loved through your love for this boy…and let the boy worship!

After that, I tried not to care what other people might be thinking, and I clapped, sang, waved my arms, and hollered as loudly as I could with Caleb. It was pretty cool, and my throat hurt afterward 🙂 Life is so different now with kids, and God is constantly redefining and teaching me what it looks like to be in relationship with Him in the throes of life with littles. All I can say is – I’m sure glad God is a God of patience, grace, and understanding, because I definitely don’t have it figured out. I love God, I love my crazy boy, and I love that I got schooled by him through his reckless abandon, as he praised God in his special 2-year-old way!

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

[FYI – I wrote this update last night with a few corrections this morning…but it’s taken me until past 3 pm today to find a moment to add the pictures on at the bottom and publish the post. So far, today has been similar to the last few.]

In my latest update on Tuesday, Evie was doing much better and it had been our best day by far. Wednesday during the day was pretty good as well, but things took a turn for the worst on Wednesday evening, and since then it’s been frustrating at best, ulcer-inducing at worst (haha)! She’s back to eating normally which is a blessing, (if not more than she was pre-surgery), but now we are dealing with an entirely different set of problems than before. If I could time travel and go back in time one week, I probably would chuckle and say to myself: “self, if you think this is hard…you just wait and see what’s coming…” (well, except for the dehydration/ER visit – that was pretty awful). By the way, if the thought of poop makes you squeamish, this is most definitely not the post for you.

In Tuesday’s update, I mentioned she was constipated, a fun side-effect of the codeine (…love how one solution to the pain problem just leads to another pain problem). By Wednesday night, Evie still had not passed a bowel movement – making it five days since her last one. We tried to get things moving by syringe-feeding water to her per her doctor’s instructions, and even tried homeopathic remedies such as a baking soda bath, but nothing helped. She was obviously cramping and uncomfortable, but we were still holding out hope that she would have a huge blow-out at any minute.

Sean finally bounced Evie to sleep at 11 pm, and we went to bed immediately after that. 30 minutes later, she woke up crying and in pain. We did more research on infant constipation online, and found suggestions to pump her legs and push down on her belly, 3 finger-lengths below her belly button. The leg pumping seemed to relieve some discomfort for a short time, but eventually, she became more and more upset. In our research, we read that as a last resort, an infant glycerin suppository could be used. We concurred we had arrived at the “last resort” point, so at 1:30 am on Thanksgiving morning, I searched for 24-hour pharmacies in our area. It took awhile to find one, and the closest pharmacy was 20 minutes away at a hospital.

As I bemoaned waiting another hour to relieve Evie’s pain, (in the middle of the night, nonetheless), I suddenly remembered we might still have adult suppositories – thanks to one of my many lovely issues while pregnant with Caleb 🙂 Sean checked, and we still had them. I conducted further research online, and found the ones we had were identical in composition to the infant ones – we just needed to cut it in 1/4. So we cut it, prayed we weren’t poisoning her (ha!), and did the deed. One minute later, (no exaggeration), she began pooping. Seriously, that stuff is magic. I don’t know how it works (nor do I really care to know), but wow, probably top 5 inventions of all time. And just because it’s hilarious, I have to share an excerpt we read on infant constipation from a professional, reputable site:

Infants normally work really hard to have a bowel movement, so straining at the stool isn’t necessarily alarming, even when the infant cries or gets red in the face. For an infant to have a bowel movement is a major effort, and it shows. Just try to poop lying on your back and you’ll get the picture. Actually, don’t really do that. Imagining it should be enough.

After the suppository got her system moving again, I really thought we were in the clear. Unfortunately, this was not the case…I suppose one suppository was not enough to rival five days of back-log. So, maybe it’s only in the top 10 inventions of all time. In any case, they’ve done amazing things for our family 😉 Over the next 24 hours, she continued to have cramps and pass gas often…and pooped five times. I guess that’s one for each day she missed.

Rewinding a tad, on Thanksgiving morning, we finally got her back to sleep around 2:30 am, and went back to sleep ourselves…until 5:15 am when Caleb woke up crying and yelling for dada, because he couldn’t find his blankie and puppy. So on all accounts, a really solid way to begin Thanksgiving.  I think our thankful hearts were being put to the test 🙂 Evie was up nursing when Caleb woke up, and went back to sleep for only a couple more hours after that. For the rest of the day, she was generally fussy, cried on and off, and refused to nap. At one point, Sean was at the store and I needed to shower, so I put her in the swing. She was ok at first, but after I got the shower going (of course), she began screaming her head off and I couldn’t do anything about it…I felt so bad for her.

I nearly abandoned attending Thanksgiving dinner at Sean’s parents house because she was so fussy, but I couldn’t stand the thought of not being with family on Thanksgiving. On our drive over to their house, Evie screamed while Caleb screamed at Evie to stop crying. I wish I took a video of the insanity, because it was just one of those moments that was too good to be true, but my brain just doesn’t work that fast on a few hours of sleep. I’m glad I went, and everyone took turns holding her and helping with Caleb so we could have a break. A good portion of our Thanksgiving dinner conversation revolved around poop and suppositories, so that was awesome too. I don’t know what you were thankful for on Thanksgiving this year, but baby poop was at the top of my list. I am not joking…at one point during the day I literally shouted: “thank you Jesus!” 🙂

The past three nights were an improvement over Wednesday night in terms of getting her to sleep and getting some sleep ourselves, (so long as we let her sleep in bed with us…which we’ve never done before). However, since Thursday, she has been crying a good portion of the day, needs to be held and bounced constantly (which still doesn’t guarantee she’ll stop crying half the time), and is refusing to nap. Her constipation was resolved by Thursday night, so that is no longer an issue. I have been googling up a storm, and we are at a total loss for nailing down what is bothering her at this point. We talked to a doctor on the phone, and she had no idea either. She’s not sick, her lip is not infected, she’s not teething, she’s not constipated, she’s eating much better, and she’s not dehydrated.

I read that the Ibuprofen/Tylenol could be upsetting her stomach, so we stopped giving those entirely Friday night, but it doesn’t seem to have improved (or worsened) her behavior. My three best guesses at this point are: 1. neurological side-effects from the anesthesia (resulting in sensory-overload and difficulty sleeping), 2. psychological side-effects from surgery (resulting in clinginess and general fussiness), and/or 3. not being able to offer her a pacifier to soothe herself. Maybe it’s just one, or a combo of all three… or an unknown 4th possibility…but who really knows, since she can’t talk to us!!! She has cried more in the last 3 days than her first 4 months combined. Her current disposition is so unlike the mellow baby we knew…it’s disconcerting. I’m seriously wondering if the surgery and all the drugs damaged her psychologically, or if something serious is going on medically and we just don’t know what it is. I’m pretty sure one of the worst feelings in the world is watching your child suffer and not knowing what is bothering them, if it’s serious (or will just pass with time), and how to alleviate it.

So, let me paint you a picture of my current wonderful mess. Aside from Thanksgiving, I haven’t dressed myself in over a week, the house is a mess, we’re eating meals while standing and bouncing her, we’re only eating said meals because people are bringing them to us, I’m pretty sure my back has a few stress fractures by now, I think Caleb feels abandoned by me (at bed time last night he informed me he’d rather have a different mommy), and I’m showering just often enough to avoid an infectious disease. Fortunately, in all the madness, I have not lost my awesome sense of humor 😉

I was really expecting things to be much better at the one-week point, but as I prefaced this post, it’s actually more grueling now since she is requiring *constant* attention (she slept a lot for the first five days post-surgery since the codeine knocked her out, so at least that provided us with breaks…even though the feeding/medicine schedule was demanding). I was re-reading her discharge paperwork last night, and it confirmed that most babies are back to their usual selves by one week post-surgery…sooo ???? I know I have SO much in my life to be thankful for, and I’m really glad she is doing better with nursing and there is no major concern like dehydration (that we know of), but we are getting put through the wringer and w-o-r-k-e-d worked.

Not to toot my own horn, but I would say patience is one of my stronger suits, and my patience (in my own strength), is no match for this. There is nothing quite like a baby screaming in my ear for hours on end that raises my pulse off the charts, slowly seeps my will to live, and makes me more inclined to ram my head into a wall (some sarcasm there…some). She’s been crying so much I’ve even begun to hallucinate…even when she’s not crying, all I hear is crying…it just. won’t. stop. Sean is supposed to go back to work tomorrow, and as things stand, I am nowhere near capable of handling Evie on my own, let alone Evie AND Caleb. Aaaand the heater stops working on a daily basis :/

I haven’t been able to write an update in days because there have been no breaks…I was only able to write this because Caleb was in bed and Sean was holding Evie, so I could do something for a couple of hours that brings me joy. Writing about all these experiences is therapeutic and life-giving for me…it helps my introverted-self recharge, process everything, and adjust my perspective (and coincidentally, allows me to keep family and friends informed on how things are going).

We need Jesus and we desperately need prayer. I cannot overemphasize this enough!! We feel so helpless and weak. 2nd Corinthians 12:9 – “And He has said to me, ‘My grace is sufficient for you, for power is perfected in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.” This has been an extremely stretching experience, and we need to rely on God to handle it well, and with thankful hearts (1 Thess. 5:16-18)…because we just can’t do it in our own strength.

Some pictures from earlier today:

Next post:

3 Week Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Last night and today were the best by a mile. We have completely weaned Evie off the codeine, hooray! It took longer than I originally expected, but that’s ok. Now she is exclusively taking Ibuprofen and Tylenol, which we’ll slowly wean her off of as well. I think she is eating more than yesterday (it’s hard to know the exact amount since she’s breastfeeding), but it is still taking her a long time to eat. I’m sure she’ll get faster as each day passes. It is still a demanding schedule administering her medications and nursing her around the clock, but I’m hoping this schedule only lasts a few more days. Sadly, she hasn’t had a bowel movement in four days (a side effect of codeine is constipation), so poor girl is having cramps. I never thought I would say this (ever ever), but hopefully she has a huge blow-out soon! Thankfully, I’m feeling better today, so I think my physical ailments must have been fatigue and/or stress-related. As always, continued prayers are welcomed 🙂

Today’s photos:

Next post:

Days 6-10 Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

The past 24 hours have been a mixed bag. On the upside, Evie has made significant improvement nursing, beginning with the 11 pm feed last night. Since that feeding, she has been doing a decent-enough job breastfeeding that we have not needed to syringe-feed her…yay! Understandably, it is still difficult for her, so it takes about 45 minutes to complete each nursing session. Since she is not eating as much as she was pre-surgery, after the 45 minutes, I still have to pump for another 15. The way she nursed today is much closer to the way I thought she would nurse immediately after surgery (so…mm yeah, probably a little too optimistic on that front, haha).

I think we finally found the sweet spot with the amount of medication to give her. Throughout the day, we lowered the codeine dosage, and she reacted fine to that. We’ll continue to lower the codeine dosage each time, until we are rotating exclusively between Ibuprofen and regular Tylenol (and then we’ll start weaning her off those as well).

On the downside, I’m not feeling well. I’ve had a headache behind my eye all day, my back/neck are killing me, and I’ve been nauseated on and off. I don’t know if I’m getting sick, if my body is reacting to five days of high intensity with little sleep, or if my body is fatigued from staying in one awkward position for multiple hours per day while nursing her (or a combo of all three). I really hope it’s not the beginnings of a cold, because that would be so awful if I got her sick on top of everything else. Despite not feeling well, I’m encouraged she nursed a lot better today than yesterday. Even though it’s more arduous for me now because I’m nursing AND pumping, I definitely think we turned a corner in her recovery, and I’m willing to take one for the team! Praise God 🙂

So please pray for me to feel better, for Evie to stay healthy and continue on the path of healing, for her to move in the direction of nursing better and eating more, and for endurance for me and Sean.

Here are some photos from today:

Next post:

Fifth Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Last night and today were better than the previous 24 hours, but still not great. The good news is Evie has been wetting diapers consistently since last night, so we’re not concerned about dehydration any longer, which is a huge relief. However, she is still struggling to eat. We had one fairly good nursing session (the best one in 48 hours), in which she probably took about 2-2.5 ounces, but for the other five or six attempts, she either took very little or refused entirely. Fortunately, she’s willing to eat via syringe, and has been taking about 2 ounces every few hours.

Sean and I are a good team and have established a good system together. After working together to encourage her to nurse, I pump while Sean syringe feeds her. I am so thankful to have such an amazing husband who is so involved and helpful. I can’t imagine doing this alone or with anyone else. He’s incredible!

Throughout the day, we increasingly spread out administering the medicine, and are now rotating every 4 hours between Ibuprofen and the Tylenol w/codeine. About midday, we also began halving the Tylenol w/codeine dose and adding regular Tylenol instead. This schedule seems to be working ok – her pain seems to be well-managed, although she is apparently still in too much pain to nurse. I mean, shoot, she has stitches that extend from the inside of her nose and wrap all the way around to the inside of her lip…I wouldn’t want to eat either. I have no idea what the ER doctor was thinking…telling us to stop the codeine cold turkey. What terrible advice!! I guess I’ll know better next time.

The especially difficult thing about all of this, is that she can’t talk to us and communicate what her pain level is. Like I mentioned in yesterday’s post, it’s a catch-22 with the pain meds. We want to wean her off the medicine (especially the codeine), as soon as possible so she can begin nursing better, but not at the expense of her comfort…which also results in her refusing to nurse. It’s been a lot of guess-work and trial-and-error to find the perfect balance between pain control and alertness.

I am thankful today was calmer and less eventful than yesterday. I am still experiencing the “peace of God, which surpasses all understanding,” and have not felt anxious today. Tired is another story, though 🙂 It’s been a demanding schedule with the meds/feedings every few hours around the clock, and it is definitely wearing us down. Syringe feeding is extremely tedious and takes 45 minutes to an hour to complete…and she spits a lot of milk back up. Thankfully, we have amazing friends bringing us meals every night this week, which we are SO grateful for…one less thing to worry about and fit into the schedule. For the last four days, Sean’s parents have been taking care of Caleb almost exclusively and we are very grateful for that as well…there is no way we would be able to take care of him, too, since Evie’s feedings require two people. And if you know Caleb, you know he requires a high level of supervision or our house would burn down! 😉 Please pray for an improvement in nursing in the next 24 hours, and for stamina for us!

Here are some photos from today:

Next post:

Fourth Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

It was quite the eventful day. I posted a lot of updates on facebook, but I can’t fall asleep and decided to write a detailed summary of the entire day on the blog. Evie continued to refuse to eat (except for a couple of ounces via syringe) throughout the night, and by 7 am she still had not peed, making it 11 hours since she had a wet diaper. We called the Kaiser nurse advice hotline, who said they would get in touch with a local doctor to see what we should do. Kaiser called back a couple of hours later, and told us we needed to go in to urgent care in Pleasanton at noon. Then they called back a half an hour later, and said we should instead go to the nearest hospital’s ER, since they did not have the capability to give her fluids if she needed them at urgent care.

So we packed up our things, and headed out to Kaiser Antioch Medical Center. She still hadn’t peed by the time we got there, making it 17 hours since her last wet diaper. She was checked out right away, but there was a long line of people waiting and no rooms available, so we were sent back to the waiting room. While we were in the waiting room, she finally peed (I don’t know if I’ve ever been more excited about pee in my life…well, except for the time when we went through a similar dehydration scare with Caleb as a newborn, ha!). We gave her more ibuprofen and it was time to try and nurse her again, so the hospital staff kindly set us up in an empty room. She ate a tiny bit before she couldn’t stay awake any longer. Soon after that, we were transferred to a room. I thought it was going to take several hours due to the long line of people waiting, but I guess they bumped us up in priority because we only waited for about half an hour, which was a blessing.

The doctor soon came in to see her and said she was dehydrated, but not severely, so he didn’t think it was necessary to hook her up to an IV. He also checked her stitches and said everything looked fine there, so that was reassuring to hear as well. He said there’s really no clear rule when it comes to dehydration, so he instructed us to continue to keep an eye out for signs of severe dehydration, and to take her in to her regular doctor on Monday to be checked on. We also talked about her meds, and he thought we should discontinue giving her the Tylenol w/codeine, since it was making her so lethargic and unable to eat. He also said the codeine was probably making her retain more water, which is why she was not peeing, and could also be making her feel nauseated. He said we should continue the ibuprofen every six hours, and give the Tylenol w/codeine on an as-needed basis.

We left the hospital feeling encouraged that discontinuing the Tylenol would help her begin eating better. When we got home, we were able to get her to eat a couple of ounces via syringe, and then we let her sleep. I took a nap too, and then woke her up at 6 pm to see if she would nurse. Turns out, stopping the Tylenol was a huge fail. She started screaming from the moment I woke her up and adamantly refused to eat, because she was obviously in a lot of pain. It’s a catch-22…give her codeine and she can’t eat because she’s too lethargic, but don’t give her the codeine and she doesn’t want to eat because she’s in too much pain. We decided to give her more codeine, because we figure it’s better for her to not be in pain and not eating much, than to be in pain and not eating anything. After discussing various options with Sean, we’re putting her back on an alternating meds every 3 hours schedule, which is what we were doing until yesterday evening when we were told to up the codeine dosage by a Kaiser nurse. Hopefully this schedule helps her to stay relatively pain-free, but slightly less lethargic. Every time we wake her to give a medication, I will continue attempting to nurse her first, then we’ll move to pumping and feeding by syringe (which is mostly what we’ve been doing).

Today was another difficult one, but aside from bouts of frustration here and there, I feel better than yesterday and less anxious and upset. I know this is due to all the prayers and God at work in my spirit. My mind keeps meditating on Philippians 4:6-7 – “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” I truly have felt His peace today.

This experience has been harder than I ever imagined it would be, but I know “this too shall pass” and all will be ok, because we are in the hands of our Father who loves us so deeply. It still sucks and is no fun (and it’s still really sad to see her struggling and so miserable), but there is a calm in my soul and it was a tear-less day (which I seriously thank Jesus for, because I hate crying…it always gives me a massive headache).

In the spirit of November and Thanksgiving, I have lots to be thankful for today: her congestion went away, no severe dehydration, no IV, no hospital stay, quick admission, electric pumps that are efficient (and the only way I will be able to continue breastfeeding Evie after all this is over by maintaining my supply), nana and pop pop taking care of Caleb for us, and an amazing husband by my side every moment, who is now a master at syringe feeding 🙂 I am sure there are plenty of others, but I am still exhausted and those came to my mind first. We would be so grateful for continued prayers for Evie to stay hydrated, heal quickly, and return to eating well soon.

Here are a couple of photos from today:

Next post:

Third Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

It was a rough night and day today. We woke Evie up every 3 hours during the night to give her medicine and breastfeed her. She did OK nursing overnight and early this morning, but she’s congested which is making it difficult for her to breathe through her nose…making it all that much more difficult to nurse, resulting in her getting worked up and frustrated. Later in the morning and early afternoon, things got worse. She started refusing to nurse, so I pumped and Sean was able to feed her via syringe. Then in the evening, she refused to eat at all. After a couple of hours, she finally drank about an ounce of milk via bottle, and about an hour ago, I was able to get her to nurse and she probably drank another ounce (i.e. barely anything…but just enough to keep her hydrated). We’ve been on the phone with Kaiser asking them what to do, and they gave us some tips on feeding with a syringe, and said we need to monitor her diapers tonight to make sure she’s peeing (i.e. not dehydrated). If she keeps this up and does become dehydrated, we’ll be heading back to the hospital. In the meantime, I’m pumping every few hours to make sure I’m keeping up my supply. On top of it all, our heater stopped working again this morning, so Sean had to spend time fixing it.

Sean and I are feeling exhausted and drained…physically, mentally, emotionally. I knew this was going to be really hard, but I wasn’t expecting to be so emotional about it all. It’s just really difficult as a mom to see my daughter so miserable and struggling so hard to eat (and she can’t talk to me to tell me what’s going on). Compared to yesterday, she’s in a lot more pain, and keeps whimpering in her sleep…it’s really sad. She really hates her arm restraints (“no no’s”), and becomes frustrated with them too. And as strange as this sounds, I’m really mourning the loss of her cleft, and I’m having a hard time with the fact that she’s practically unrecognizable because her entire face is so swollen… she just doesn’t look like my baby girl 🙁

I know God is in control and everything is going to be just fine, but right now it sucks and it’s really overwhelming…and I think it’s ok to feel that way and acknowledge that. I know people experience much worse things in life, but in this moment, I am sad for sweet little 3-month-old Evie Love, and it’s been an upsetting and stressful day with her refusing to eat. These are my raw and honest emotions. I’m also sleep deprived, which always makes everything seem much more formidable.

And on that note…I am going to bed. I am so thankful for all the support and especially the prayers, keep them coming! Pray that she would start nursing better throughout the night tonight, and tomorrow (and if not, that she would at least take some milk via syringe/bottle). And a special thank you to Robyn Schlichter, who allowed me to have a pitiful meltdown in her arms earlier today 🙂

Since they say a picture is worth a thousand words, here’s some photos that pretty much sum up our day:

 

Next post:

Second Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures