Preparing For Brachial Cleft Surgery

This was originally written on Monday, July 7, 2008:

Joe and I just got home from our non-appointment with the ENT. Just like the plastic surgeon last week, this appointment had to be rescheduled because the guy needed to be in surgery for the rest of the day. Only this time we actually went to the office and waited a half-an-hour, so that was too bad (especially since Joe took off work). But, at least we don't have to sit and wonder anymore what the surgery is going to be like.

After I posted last week (to read my blogs about this subject click here), I remained in good spirits until Wednesday night. I'd done well with my baby's brachial cleft situation for a week (after having a horrible week the first week), but that all went out the window before bed Wednesday night, as I admit I was not fun to be around. On Thursday morning I was SO nervous--I can't even remember the last time I had "butterflies in my stomach" that bad. It just seemed like the appointment was so important: the questions I asked, the answers the surgeon gave, etc. It didn't matter anymore what the internet said--the "real thing" was now. We were going to find out Logan's fate.

So, I'm not proud to say that I was snapping at Joe on his birthday Thursday morning and was on the verge of tears. (I purposely didn't wear mascara that morning because I assumed there would be smudges.) I tried to joke that wasn't a good sign if I cried before we even got there. But I calmed down on the drive when we were listening to an 80's radio station and in that mix they threw in a song from 2001--the song that ended up being Joe & my song that we danced to at our wedding reception in 2003. ("Hero" by Enrique Iglesias.) I realized why it's easy during times like this for couples to pull a part--but this is a time we need to team together more than ever. So I shut up and we held hands the rest of the way to the surgeon's office.

Once we arrived, I thought maybe we walked into a modeling agency on accident, haha. The place was swimming with extra-beautiful people. It was rather humorous. I checked in the front desk and we were ushered downstairs to where the normal-looking people were, lol! (The upstairs is where they do the aesthetic surgeries and downstairs is medical procedures.)

We didn't have to wait long; the plastic surgeon came in during the middle of his surgeries (so he was still in his scrubs) to answer our questions. I was amazed that I made it through the entire appointment without tears. He was just so casual and confident that it seemed like we were making Logan's first dentist appt. rather than talking about surgery.

He explained that he was very familiar with brachial cleft sinus (yet another version of the name--you might have noticed in my "More On Brachial Cleft Fistula" post that when I was copying the medical information the first word was spelled with an N. When my mom spoke to her ENT about it, he referred to the hole as a "brachial cleft fistula"--which is what Joe & I have been calling it. But our pediatrician refers to it as a "brachial cleft cyst", however that's only once infection has occured--right now there is no growth for Logan).

During the surgeon's twenty-plus years of practice, he's done this surgery rougly once a month (which sounded good to me, considering the condition is rare). It's something that is best done when a child is 3-4 months old. After that, infection is likely (and worst case scenerio can lead to death; best case scenerio the surgery is much more complicated and risky than doing it prior to infection). Apparently once a baby gets to be 3-4 months old surgery/anesthesia affects them the same as it does adults, which is a relief.

So, he'd like to do Logan's procedure in August. They will have to stick a probe in the hole to see how far it goes in and that will determine the seriousness of the surgery. (They have to cut into the tract to fuse the area together.) But generally babies don't need to even spend the night in the hospital--they can go home after a few hours from when they arrived! Best of all, he shouldn't need anything more than a Tylenol afterwards (if even that) for recovery. Babies usually act no different following this surgery and can resume their normal life (with the exception of not taking a bath for a few days). The scar will be so small that by the time he's an adult it won't even be noticeable.

This was all MUCH better than we originally thought and so we walked out of the office very relieved. They sent a letter to our insurance to make sure that it will be covered, and expect to hear back within 4-6 weeks. At that time they'll want to immediately schedule the surgery. If the ENT says the same things we'll probably have the plastic surgeon do it--unless we like the ENT better. Either way, it will be done at Children's Hospital (where Logan stayed the night during his jaundice) which is the best place possible. If the two doctors contradict each other then. . .I guess we'll have to find someone else. Our appointment with the ENT is now tomorrow (Tuesday, July 8th) at 2:45 pm.

I loved our experience with Children's Hospital a couple of months ago, except for one of the guards there. Joe had parked outside the entrance and we went in to give the front desk our information. An old man came over to us and told us (very rudely) that we needed to move our car immediately--that place was only for pick-up and drop-off. Joe was like, "We're dropping our baby off." The guy was like, "Your wife can wait here while you move your car!"

I GLARED at the guard. That was probably the most emotional week of my life, you'd think he'd know that parents coming in with a baby would probably be in a vulnerable state and thus could have treated us nicer. At least all of the people there who counted did.

Shortly after we returned home from our appt. last Thursday, Joe's mom arrived to celebrate his birthday. She had stopped to pick up Moe's (Southwest food) and so we ate that for lunch and then I picked up Joe's DQ cake and we had that for dessert.

In the meantime he opened presents (I ended up getting him Guitar Hero Aerosmith). Joe's mom had gotten him another WII game (Super Mario Galaxy) and so he played that & G.H. Aerosmith while she took a nap.

That evening we all took Logan and the dogs for a walk around the neighborhood where everyone was shooting off firecrackers. (Cosmo was a scaredy cat so I had to hold him half the time.) We decided not to go see fireworks since Logan's so young. We ordered pizza & wings, and Sandi & I watched August Rush (a movie she had bought for Joe & me when we came home from the hospital after Logan was born), while Joe played more WII. We had watched the first twenty minutes of August Rush when she stayed with us the first time after Logan was born, but (no surprise) we'd been interrupted. She hadn't known anything about the movie when she bought it, but she couldn't have picked a more perfect film for me just having a baby boy--it was really good!

On Friday, July 4th, Sandi made pancakes in the morning and helped us around the house both with dishes (very nice!) and with Logan, as she babysat him while Joe & I went to the movie theater for the first time by ourselves since I can't remember. We saw Get Smart which was funny. It was nice to get a break for a date. That is the hardest part about being a stay-at-home mom. No breaks! It's 24/7 running around, focusing on the baby--and when I'm sleeping I still have to be "ready" to run around. The closest I get to time away (and unfortunately even being on the computer or watching a movie or reading isn't good enough since I'm still getting up & down to take care of him in the middle) is when I go to the grocery store. . .but I wouldn't consider that relaxing! I think I'm going to make an appt. for a massage--that sounds REALLY NICE. Plus, it appears I might be making myself sick.

Off and on for the past 2-3 weeks I have felt light-headed. Then, last Monday evening it came on super strong and stayed for over 24 hrs! I was so scared that I was going to pass out (which I've never done before). I'd never felt this particular way in my life and it was really scary. The room kept spinning and I thought I'm going to faint and then I won't be able to tend to Logan! I about called Joe to either come home or call me every hour to check on me. Every Tuesday he golfs after work and I was really thinking he was going to come home and find me on the floor. I planned to go to my doctor on Wednesday to get my iron levels checked (I've never been anemic but know some breastfeeding moms are)--but I felt better that day, just really tired. So then I thought maybe I needed more sleep, so I slept 10.5 hrs. (I'm pretty sure it's not dehydration which can happen easily to breastfeeding mothers--so you're supposed to drink a ton and consume extra calories, but I've been eating too much these past 2-3 weeks--I think that might be my coping-mechanism with Logan's brachial cleft.)

I was fine on Thursday-Saturday but then last night I felt dizzy again. I feel healthy as far as any virus' so I think that no breaks for the past 11 weeks is what's catching up with me.

Sandi left on Saturday after we all went to Mount Vernon Gardens (a really pretty park that overlooks the Missouri River, where Joe and Logan are going to have their baptism and dedication either this weekend or next weekend) and had a Blimpies picnic.

Joe and I then bought ourselves an eliptical machine! :) I'd written in one of my pregnancy posts that was something we were looking into, so we are happy with the selection and price. We get to pick it up on Thursday. I'm so excited, I still have the desire to "move-move-move" that was in me during my pregnancy but had been unable to.

On Sunday my mom & stepdad came over on their way home from visiting my maternal grandmother in Kansas City. We all had a nice visit; they thought Logan was acting more mature than when they last saw him. He's finally starting to hold eye contact, although sometimes he blinks a lot while looking directly at something; my stepdad said he's shy, haha.

I ended the weekend watching Juno and then crashed in bed. As much as it helps to have company over to help out (I realized how lucky people are who live near their relatives--as I can't imagine how much easier life would be if I had the grandmothers to watch Logan whenever I needed a break), it's also very exhausting. I wish I knew how to let everyone else take over with Logan when I'm around. Since obviously everybody has a different way of doing things, I don't know how to just be okay when others do things differently with him. When it comes to other people and their own children, I could care less if it's different from me--I think everyone has to do what works for them. When it comes to me or anyone but Logan, I also don't have strong opinions or am easily bothered if someone wants to change up our pattern. I'm not one for conflict and usually go with "whatever." But with Logan that is NOT the case. With him I feel I must follow what I read and hear if it makes sense and fits for me. But when other people do it their way with him, it's harder for me to not "correct" them---and so then I feel like a b***h. I'm trying to pick my battles, but with both Joe's mom and my mom, I can tell they're both getting defensive because they probably think I'm putting them down even though that's not my intent. I don't conider myself a neurotic, tense, or picky mom--but sometimes that's how I feel around them. SIGH. I welcome any suggestions on how to deal with other people taking care of your kids because it would be nice to get the full benefit of having help!

In other news, Logan's eyebrows are in now. We can't tell yet whose they are, though.

I don't think I ever told you about how when Logan was six weeks old I left him for a minute and he screamed, so I ran back to him and he started laughing. I said, "Oh you think that was funny, getting mommy all worried?" And he smiled & laughed again. He's a squirt. :)

I think now is the time when people stop referring to babies in weeks but change to months, as he is 11 weeks old now but still has two more weeks before he turns 3 months old, so from now on I'll be referring to him by months rather than weeks. His three-month birthday (7/18) happens to be on a Friday (the day he was born) so I made his first professional picture at Target for that day!

I think that Logan might be getting ready to teethe, but I hope I'm wrong (since he's rough enough already when nursing). I read that, on average, it happens around 6 months of age so he'd be really early if he's showing signs already. . .but on Saturday he was fussy all day (which is not normal for him). You might remember me saying that he's cut down on his pacifier usage for his hand--well, that day he wouldn't stop sucking on his hand and tried to put anything within reach in his mouth. He was also drooling, which he never has before, and wanted to nurse ALL DAY. But while that would comfort him at first, he'd then get cranky on the breast which he never has before. So, I got a bottle of breastmilk out of the fridge and rubbed the cold nipple on his gums and he stopped crying. That's when I wondered. . .and so I looked up online and saw that all of the things I just mentioned are signs.

However, then Logan slept a lot that night so I wondered if he just got overstimulated over the 4th of July weekend. As I said in my last post, he has started fighting his naps so that may be why my usual three things didn't work that normally stop his cries (#1-feeding, #2-holding, #3-rotating him from the car seat to the swing to the pack n play to the play gym to his crib). He's been better since then, except still drooling and sucking a lot on his hand.

At work the other day one of Joe's co-workers asked if Logan sleeps through the night. Joe answered, "He usually gets up two times." Apparently the guy didn't like this answer. He said, "Oh that's not good! He should be sleeping through the night now! Do you leave a light on?" Joe said, "Yes." The guy was like, "Oh there's your problem!"

Now I've only been a parent 2.5 months but it seems to me that babies don't HAVE to do anything. Yes, there's an "average" but not necessarily a "right" or "wrong." From everything I've read, "on average," it takes babies 4 months to sleep 8 hrs straight through! (But, because of that Baby Wise book I mentioned in my last post, many parents are "training" their babies to do it as early as six weeks, which is why my PA gave us the go-ahead at Logan's two month check-up.) But Logan is 2.5 months old and sometimes just gets up once, so it appears that soon he will be sleeping through the night. As I said in my last post, his current schedule is not bothering us which is why I haven't read that book. That's not to say I won't in the future if he's still not sleeping thru the night at 6 months, but I don't get why this guy was so passionate about telling us that the way we're doing it is wrong. It made me think we'll be getting more of these kinds of comments to come. I purposely don't pay attention to when a baby is "supposed" to do "this & that" because I don't think it's a competition. But sadly other people must.

We did shut the closet door to dim the light that we leave on just to see if it makes a difference--but it hasn't. I don't mind letting Logan cry for up to 5 minutes now (before I'd always rush to him immediately--even when I was going to the bathroom :p) but he's never cried for more than that. According to The Mother Magazine, "there is a dramatic fluctuation in blood flow during extended crying which decreases cerebral oxygenation and causes an increase in cerebral blood volume. This increases intracranial pressure and puts the baby at risk for an intracranial haemorrhage. At the same time, the blood, by now oxygen-depleted, flows into the systemic circulation, rather than into the lungs."

Yikes. I admit I spent my pregnancy doing a lot of research about pregnancy but nothing about parenting. I guess now's the time to start figuring it all out! So, ater my last post when I mentioned learning about the CIO (cry it out) method, I did some research and decided I support what is called "attachment parenting." (This is the opposite.) You can read about what these mean by clicking on the following two links: The Potential Dangers of Letting Your Baby Cry and Attachment Parenting At Storknet.

Finally, for those who followed my pregnancy--remember how the top of my belly became numb during my second trimester and my doctor explained that it was the uterus pressing on the nerves? Well that area is still numb! I only notice it when something touches it, then I think, that feels weird. I wonder if the nerve still hasn't recovered from my pregnancy. My wrist isn't improving at all so I've decided I'm going to go to the doctor sometime within the next few weeks.

Also, I pumped 11.5 oz recently so (thanks to pumping AND nursing all day long, as well as taking fenugreek which I'll continue to do) my milk supply is definitely not low anymore so I'm going to go back to just nursing exclusively again--yeay!

I'll let you know how tomorrow's appointment goes.