Friday, July 31, 2009
Wednesday, July 29, 2009
Today we met with another craniofacial surgeon to get an opinion about how Max is progressing after surgery. Despite hearing that we needed a repeat surgery from a specialist in Texas, we were both hoping to hear something different today.
The surgeon we saw today was very knowledgeable and very thorough. He actually trained our first surgeon, and told us that he has done around 1500 cranio repairs. His opinion was that Max's head wasn't corrected enough. He couldn't tell us for sure if his bones were shifting post-op, or if the swelling was just subsiding enough to show us the true shape of his forehead, but it was obvious to him that the results of the surgery weren't what they were supposed to be. In fact, he told us that when he first walked into the room and looked at Max, it looked as if Max had never had any surgery at all.
The frustrating thing about the visit with this surgeon is that he wouldn't recommend for or against surgery. He told us that it wouldn't get better from this point, and could possibly get worse. But he also told us that Max is at risk of developmental disabilities just by virtue of having metopic synostosis in the first place, and that doing a secondary correction doesn't decrease his likelihood of delays. (Fortunately as of now, Max is meeting all his milestones and progressing great!) He said that Max is not, as of now, in danger from increased intercranial pressure, and that he could help Max's eyes space out more with a second surgery. But he also told us that a second surgery is significantly more complicated, due to scar tissue, increased risk of bleeding and the fact that he would be undoing something another surgeon already did. Because his recovery was complicated previously by low sodium levels, there is a greater possibility we would be facing that again as well. So we have to weigh the risks of surgery against what we think the benefits would be.
I don't know how we are supposed to make a decision like this. How can I put my baby boy through another long, painful and risky procedure. But then again, I keep picturing how I would feel if Max came to me when he was 15 or 16 and told me he wished we would have fixed this when we had the chance. I worry about doing all this for "cosmetic" reasons. But the women I have talked to whose kids have all been through this keep reminding me that this surgery isn't cosmetic, which would take something normal and make it better. It's corrective, meaning it's taking something incorrect, or defective, and making it normal.
We left the surgeon's office planning to make a return trip in two-three months so that we could evaluate with him the direction Max's head shape is taking, and make a more firm decision about surgery then. When we got home, I found this email waiting in my inbox:
I agree with you. I think the temporal area of the forehead is settling far more than I would have expected. We have two options. First, we could wait to see if his head shape improves with time. I expect that if we take that approach, we would see some improvement, but probably not normalization. Second, we could return to surgery and reposition the brow with some bone grafting to help it remain secure. The bone graft could be taken from surrounding cranial bone so we would not have to take bone from another part of his body. As difficult as it is to say, I believe we would be better off going back to surgery. I am sorry about that. But all things considered, it is probably best to do that now while he is still young enough to not remember. I would love to talk this over with you by phone or in person. My cell phone number is xxx-xxx-xxxx.
So that settles it. One cranio-facial specialist from Texas say surgery, our original surgeon says surgery, and another surgeon says surgery is an option we should consider. It looks like we're headed for another surgery.
The question is now, how do we know who is a good surgeon? I know for certain that we won't go back with our original surgeon. In fact, we're contemplating a malpractice suit at this point. How do I trust that the surgeon we met with today has the experience to tackle what he defined as a difficult and rare procedure? There is another craniofacial surgeon here that we'll meet with just to cover all our bases, but how can I just take someones word for it when it involves my son's life? Naturally, we want the best for him, and if that involves flying to Texas to get the best possible care, we'll do it and enjoy a giant steak while we're there. But even then, how am I supposed to make this decision for him? Who decided I was smart and responsible enough to do this? I don't think I signed up for this...
Monday, July 27, 2009
She couldn't understand why I made her go upstairs to change. I told her I'd take a picture to show her when she was thirteen. She'll thank me later. (Or at least that's what I tell myself!)
Monday, July 20, 2009
I am a pregnancy and birth fanatic. I have attended many homebirths as a doula, and firmly believe that homebirth is as safe or safer as hospital birth for healthy low-risk women. I started working as a doula a year or so before Max was conceived and was lucky to be able to work with a homebirth midwife, Jules Johnstun, who attended my birth and is one of my very closest friends.
This story is very long. I can't be held responsible for any house-destroying that your children may embark upon while you're reading this. And be aware that I'm including pictures. Because Max was born at home, there are quite a few pics that involve some degree of nudity. I'm trying to be tasteful and PG rated, but consider yourself warned.
Max’s birth story begins with big sister Ashlynn’s birth. After about an hour of active labor, Ashlynn was born on the side of the freeway, in the front seat of the minivan, caught by her daddy with the assistance of the 911 dispatcher. There are so many ways that Ashlynn’s birth affected me, and I didn’t realize how profoundly until I was pregnant again. Prenatal visits were filled with talk about what to do if the baby came too fast, or how to slow down labor to make it manageable. I became extra worried when my family moved in the middle of the pregnancy- my midwife, Jules, was now around an hour from me. I visualized a longer labor; four, maybe six hours would be perfect. It would allow my team time to get to me, it would allow for more time to integrate my experience and stay on top of the contractions. After a lot of soul searching, I realized that I was scared of birthing alone, scared of the out of control feeling that was so prevalent during Ashlynn’s birth. I spent a lot of time meditating on a peaceful, calm birth, and worked to believe that just because a previous birth had been chaotic didn’t mean that this one was going to be.
When I started having regular contractions on the night of November 6th, I thought nothing of it. Regular, timeable contractions were an almost nightly event, but when I would change positions or activities, they would peter out. But that night, I noticed a few contractions that were continuing despite my activities. I didn’t want to say anything to Tom for fear of jinxing it, so we sat down to watch tv, fully expecting everything to stop. Instead, contractions started lengthening, getting stronger and closer together until they were about 3 minutes apart. When I realized that these contractions weren’t going away, I decided to call Jules to give her a heads up. She told me later that I called just a few seconds after she put the finishing touches on the booties she was knitting for Max. I wasn’t ready for her to come, but wanted her to be prepared. I was grateful that things were starting out slowly and gently.
I was restless, pacing, walking up and down the stairs, and rolling my hips with contractions. Tom was anxious to do something, so he started getting the birth tub set up, checking the hoses, and asking if it was time to fill it up yet. I was amazed to see the birth tub in my own bedroom; the crinkle of the tarp and the vinyl smell of the tub were so familiar to me from births I had attended as a doula. Having it in my room made it real- I was actually going to have a baby!
The birth team showed up around midnight. I was having consistent contractions by this point, but when Jules checked me, I hadn’t progressed much further than I had been at my previous prenatal visit, and Max’s head was still stuck on my pubic bone. We decided to try lifting my belly during contractions to help Max’s tuck his head and put more pressure on my cervix. After a few minutes with the belly lift, the contractions noticeably intensified, and I had to work a lot harder to stay on top of the sensations. An hour went by, and I needed more and more support physically and emotionally. I couldn’t keep tears from flowing- they weren’t from pain or frustration, they just came from the intensity of the emotions I was feeling. What I needed most at this point was lots of counterpressure and lots of Kleenex!
We didn’t know how dilated I was, but the frequency and the intensity of the contractions changed so much so quickly that we knew I was making progress. One of the things I really wanted during labor was to keep things light-hearted so that I didn’t start taking things too seriously, and I was really enjoying having my good friends with me laughing and joking. There were moments of true silliness that I really needed, because things were getting really intense very quickly. I moved to the tub before too long, needing the comfort of the water during the intense surges.
I was feeling a lot of pressure with the contractions, and started grunting, coughing and pushing with each one. Because I had torn so badly with Ashlynn’s birth, one of my primary goals was to have a gentle and calm second stage, and allow my body to do most of the work to avoid the chance of another large tear. Jules and Heidi, my doula, kept reminding me to be gentle, and I had to fight against my body which was screaming at me to “push!” During one contraction, I felt a “pop” and we saw some vernix in the tub. It seemed like my water had broken. Just after that, the contractions stopped for a minute, and I took the chance to float in the water, release the tension, and let everything go. The room was dark except for candlelight and a flashlight floating in the birthing, and I grinned seeing little white flecks of vernix in the tub. It was such a peaceful moment- it was the hope for moments like this that fueled my desire for a homebirth. In the back of my mind, I thought I had done it- that this marked the end of transition, and I was in the “rest and be thankful” stage that often happens right before the baby is born.
Contractions started again in earnest a few moments later, and I checked myself, expecting to feel the baby’s head close. Nothing. I was surprised- it felt like I had been pushing for a while, and I expected that I was close. A few more pushy contractions went by, and still nothing changed. I asked Jules to check me again to see what was going on. As she did, she got a serious look on her face, and I could immediately tell that something wasn’t right. I asked her what was going on, and she said “Well, you still have some dilating left to do, but the baby’s nice and low- his head’s right here.” I figured I had a little bit of a lip, and it would just take a few more contractions. Having her hold my cervix was horribly painful, all I wanted was to tell her to stop, but I just kept thinking that if the lip would just go away, he could be born.
After a few minutes, Jules said she was done. I asked her if it was just a lip, and she said “Well, no, you still have some work to do.” I’d done enough births with her to know that that was code for “You’re not complete yet, and I’m not going to tell you a number so that you don’t get discouraged.” She suggested changing positions, and breathing through the contractions rather than pushing. It was so frustrating not to push- my body was doing the pushing and I was along for the ride. Fighting against it was incredibly difficult. She had me switch to saying “aaaah” during the contractions and I alternated between the bed, the birth ball, and other positions. Soon, the contractions started easing on both frequency and intensity, and Jules suggested that I might just need a little bit of a rest to get things going again. I was frustrated that things weren’t moving along as I expected, but it was four in the morning, I was exhausted, and figured a little sleep could do me good.
I slept fitfully for about an hour. I was still contracting, but it was only enough to make me uncomfortable. I had a surge of energy; I was ready to have the baby! I started pacing up and down the stairs, and Jules started dosing me with blue and black cohosh. After a half hour of stairs, herbs and no serious contractions, we had the “you’re not progressing, things have stopped, I think its time for you to go back to bed and for us to go home” talk. I hated giving that talk as a doula, but I hated hearing it even more. So frustrating to have done all that work for nothing! I had Jules check me one more time, and once again, she didn’t tell me a number. She did tell me that he was asynclitic, (his head wasn’t positioned the right way against the cervix,) his head was deflexed (making it nearly impossible for him to enter the birth canal,) and he was back to being very high. They tucked me back into bed, with hugs of encouragement, telling me that I would most likely be calling them back later that day or the following evening.
I was incredibly discouraged. It felt like I had been right on the edge of having my baby and had it all taken away. Tom stayed home that say from work, and we spent the day sleeping, moping, crying and walking around the house like zombies. I was contracting on and off, and although they were regular, they were only short and light. About five or so that night, things started picking up again. I retreated to my room, turned out the lights, and turned on some soft music. I put on the necklace of beads that I had been given at my blessingway, read a list of affirmations that H had given me, and tried to stay relaxed, peaceful and focused. The contractions strengthened, and were back to 2-3 minutes apart. I called Jules and said it was time for everyone to come back, but within 45 minutes, knew that I had made a mistake, because contractions were slowing down again. By the time everyone arrived I was sobbing. My body had betrayed me. I was worried that I wasn’t going to be able to have my baby at home. I was incredibly embarrassed that I had had two “false alarms” and brought the entire birth team out to my house, an hour away, twice in one day. I felt very broken.
Jules checked me one more time at my request, and nothing had changed since they left early that morning. She finally told me I was dilated to a 6. I couldn’t believe that I had labored for an entire day, felt like I was going to push out a baby, and was only at a miserable 6. We discussed options. We talked about “making things go” via stairs, breast pump, even castor oil. Ultimately, Tom and I talked and decided it was best to leave it alone. I was exhausted physically and emotionally, and I didn’t want to take the chance of trying to force labor and have it fail, necessitating medical interventions. So once again, they tucked me into bed, this time with a healthy dose of advil and a couple of sleeping pills, and the reassurance that it wouldn’t be long before I had a baby, a few hours or a few days at the most.
The next week was a long and miserable one. I tried going to church on Sunday, and left in tears when someone said “I thought you had your baby.” I explained to hom that I had labored for an entire night before things stopped, and he responded, “Why didn’t they just give you pitocin?” I cried every day. I made a list of the reasons why I wanted a homebirth. I read the scriptures, had multiple priesthood blessings, and talked to Max, telling him that it was time for him to be born. Jules called everyday to check on me, to help me laugh and to listen to me rant and rave. I tried to maintain belief in my body and in the process of pregnancy and birth.
I was at a friend’s house the next Tuesday afternoon when I felt a wet spot in my underwear. I didn’t think much of it, just figured it was one more of those lovely pregnancy things. I continued to leak fluid throughout the day. I was texting with Jules from time to time, and mentioned it to her offhand, and we both decided it was probably nothing. (Ruptured membranes put you on the clock- traditionally, you are required to transfer to a hospital 24 hours after your water breaks.) Wednesday I was supposed to attend an all-day training with Jules, so I dropped Ashlynn off at the baby sitter’s, and headed to her house. We were going to do a quick prenatal check, then head off to the training.
When I got there, she handed me a strip of paper to test if it was amniotic fluid leaking. As soon as I tested it, the immediately turned blue. When I asked Jules what color the strip wasn’t supposed to turn, and she said blue, I knew that things were finally going to start happening. Since I had been leaking fluid for a full day without contractions, I knew it was time to do something. As much as I didn’t want the castor oil cocktail, we both knew it was effective and that it was probably the best option. Jules checked me (yes, still at a six!), stripped my membranes, and sent me home with a purse full of castor oil, herbs, instructions to stop at the chiropractor for a quick adjustment and then head home to get things started. I wasn't thrilled with the idea of a castor oil induction, but was excited that it was finally going to happen.
My instructions were to take 2 oz of castor oil and take a long hot shower. Blending the castor oil into a smoothie made it palatable, and by the time I got out of the shower, my tummy was making some terrible noises! The next few hours were a blur of trips to the bathroom, and more doses of castor oil and herbs. It took 3 full doses of castor oil, trips up and down the stairs and lots of quality time with the breast pump before my contractions decided to settle into a pattern.
As the waves strengthened and started to take more focus, I was reluctant to let Tom set up the tub, (we had filled and drained it way too many times!) or to call in my team. Jules and Heidi called frequently, and I gave updates, but felt very gun shy about calling them up to my house again. The contractions varied, but were the strongest on the birth ball, so I camped out in my darkened room, bouncing on the ball. Any time I changed positions or did anything different, the contractions would slow down, so the birth ball is was. Soon, we called everyone again, knowing that one way or another, I was going to have a baby that night!
Being in the water in the birth tub was amazing. I still felt every contraction, but it was much easier to relax and let my body do the work. I loved the peace that came in between contractions. My room was quiet, dark and peaceful- I was aware that people were coming in and out, but I was able to stay relaxed and focused. Someone was behind me stroking my hair and rubbing my shoulders, and I felt very surrounded, supported, encourages and loved. The contractions were difficult, painful, and took all of my concentration to stay focused, but manageable, because this was how I had always pictured labor.
The contractions started to strengthen and get closer together, and I was finding it hard to stay on top of them. In my lucid moments, I was trying to gauge where I was in the labor process, and judging by the intensity of the contractions, I thought I must be nearing transition. I was grunting and moaning with the strongest contractions. Jules suggested that I move from sitting to kneeling in the tub, to try and use gravity to bring the baby down. A few more contractions went by, and it became obvious that instead of the contractions intensifying, they were once again spacing out and weakening. I knew what was coming before Jules and Heidi suggested it: I needed to get out of the tub.
We tried the “doula hula” but I was hopelessly and humorously uncoordinated at the hip movements. Heidi took me through a relaxation script, and while it was nice to try to be completely relaxed, I kept thinking about how few contractions I was having, and how it felt like I was back at the beginning of labor. They questioned if there was something emotional holding me back, or if there was something I was afraid of. I wracked my brain for something, anything that could be holding me up emotionally. I knew I wanted a homebirth, I knew I was ready for my baby to come. I tearfully insisted there was nothing holding me back- I just wanted him to be born.
They again dosed me with black and blue cohosh, and we bundled up to head outside for a walk, hoping that the change of scenery and the activity would start labor up again. It was around two in the morning, and the night was cold and clear. We must have made quite a funny sight traipsing around the neighborhood in the middle of the night! We walked past the stream that runs by the park, and Jules was nearly scared to death by a flock of birds that we had startled out of the marshes. We commented on how beautiful the nearly full moon was. And we stopped every time I had a contraction to once again lift my belly to try to encourage Max to find a better position.
I had been on several middle of the night walks as a doula. I never fully appreciated how much better it is to be a doula than a laboring mom on one of those walks until then. Jules had a whole structured routine involving curb walking, (one foot up on the curb and the other foot on the street,) squats, lunges, and speed walking. I was mentally and physically exhausted, but knew that if contractions didn’t start picking up soon, we would be out of options. So I kept walking. Jules kept chanting and singing “Faster, faster, faster,” and I probably would have either laughed or yelled at her had I not been so tired.
We headed home after about an hour of the drill sergeant routine. Although I was having contractions, it felt much like the beginning stages of labor again- short, infrequent, and weak. But Jules promised me that if I was having contractions she would break my water when we got back. While I wanted my water to break on its own, my start and stop pattern was discouraging and exhausting, and we thought that if we could get his head applied to my cervix a little better, it might get the contractions going in a more consistent pattern.
We went back upstairs to my bedroom, and I looked longingly at my bed. My body craved sleep, and for a split second, I almost decided to lay down and finish laboring another day. Luckily, my more rational mind intervened, reminding me that it was time for the baby to be born. When Jules checked me, ready to break my water, she told me I was at a 7. This was the low point for me. By this time, I had been in labor twice, a week apart. Twice I had been pushing, only to find out that I wasn’t even close to being ready. I had hiked countless flights of stairs, drank a bottle of castor oil, and did lunges through the neighborhood at two in the morning. Still I wasn’t progressing. I was so discouraged, and the pain from the exam was sending me over the edge. I let out a few choice words directed at my midwife, and just then, she snagged my bag of water. I couldn’t believe the amount of fluid that came out. They kept replacing chux pad after chux pad as the fluid kept coming. Once we thought it was over, Jules sent me to the shower.
Things were instantly different. The pain from the contractions ripped through me like a freight train. My knees buckled with each contraction, and I had a difficult time remaining standing. My poor husband was trying to support me, and use the hand held sprayer on my back, but there was nothing that could distract me from these contractions. It only took a few contractions before I decided that being upright in the shower was not where I wanted to be.
I could only take a couple of steps back into the bedroom before I dropped to my hands and knees. Heidi was there instantly with counterpressure on my sacrum, and I kept asking her to push harder. I was moaning and yelling; the sounds were echoing and vibrating through my whole body. In my lucid moments I kept thinking about how loud I was being and how I needed to tone it down, but once the pain started, the sounds were involuntary. I looked up briefly to realize that Ashlynn had woken up and joined my mom on the bed. She was quiet, wide-eyed, and beaming with excitement.
Except I didn’t think I could do it anymore. I was finished. Not one more contraction. “I can’t do it anymore.” I said, breathlessly. “Yes, you can,” was their answer. “No, you don’t understand,” I insisted, “I can’t.” “You can do it. You are doing it,” was their response. They didn’t get it. I couldn’t go on. I couldn’t possibly have one more contraction and keep going. I was ripping apart. Why weren’t they listening? Why wasn’t someone doing something? And even as I was insisting that I couldn’t do one more, another came. And another. There was nothing I could do but ride it through.
I looked my husband in the eye, and he said “Think of the joy.” We had talked often about how joyful it would be to have our whole family together after the birth, and how much we were looking forward to meeting this new little person. I took both of his hands and squeezed as hard as I could, his voice anchoring me. In a brief moment of peace, I became aware that I could smell the distinct salty-sweet smell of birth. I looked up and said “It smells like birth!” Everyone laughed, and that was the moment I knew I was going to make it- I was actually going to birth this baby here, in my room.
I started hearing Heidi and Jules talking about moving me into the tub. I refused. Up to this point, every time I got in the tub the contractions stalled, and I was worried that if I made the move to the tub, I would once again stall out. As I saw Jules setting up chux pads around me, I had the distinct feeling of needing to go to the bathroom, and when I voiced it, everyone laughed. All doulas and midwives know that when a woman in the end of labor says she needs to poop, it means that there’s a baby's head coming quick. Heidi and Jules insisted that I just needed to have a baby, and I just kept insisting that I needed to go to the bathroom. Tom helped me up and onto the toilet. It only took one contraction there to convince me that, sure enough, I just needed to have a baby.
The contraction on the toilet was agony- the worst one yet. I couldn’t get off the toilet and back on my hands and knees fast enough. I rode through one more on my hands and knees in the tiny bathroom. (I found out later that at this point, Jules was convinced she was going to have to maneuver herself into the bathroom to catch the baby!) After that one was over, Tom looked at me and said, “That’s it. We’re going to the tub now.” He practically picked me up and carried me into the birthing tub.
The second I was in the tub, I felt his head drop into the birth canal, and I knew he was coming. Within a few seconds of voicing that, my body started pushing. One of my biggest goals that we had discussed when I was pregnant was having a calm, controlled pushing phase, so that I could avoid the extensive tearing that I had experienced due to Ashlynn’s lightening-quick entrance, but there are no words to describe the involuntary force that came over me. I was looking right at Heidi who was demonstrating how I needed to breathe. I was trying so hard to keep my breathing light and up in my chest, but as my body started pushing there was nothing I could do but go with it. I felt him move down more with each push. I briefly noticed both my girls next to the tub, bouncing with excitement, and trying to reach into the tub, as if they wanted to hold him before he was born. I started to feel burning, stinging, stretching- they encouraged me to reach down and touch his head, and I was surprised at how much of his head I could feel. The emotions and the sensations were powerful and overwhelming; I was terrified to feel so out of control. “I’m scared, J” was all I could manage to say. “I know,” she replied back. One last giant surge, a giant involuntary push, I felt a pop, and heard “Here’s the head.” One more push and his body came spiraling out at 4:06 am, November 13th.
I sensed Jules making some elaborate movements and realized she was untangling him from his cord, then I heard her say “I need the bag.” She placed Max on my chest, and I held him tightly as she used the bag and mask to encourage him to breathe. She kept giving him puffs of air, and I could feel his little body wiggle, trying to come around. I was never nervous that he wouldn’t breathe- I could feel his spirit all around me, and I could feel him making the effort. Finally he took a breath, and let out a small cry.
Those first few post-birth moments are indescribable. He was so tiny, covered in vernix. His eyes were open, studying everyone around him intently. Adrenaline surged through me, and I was so thrilled to be at home, in the birth tub, holding my new little boy. I studied every inch of his tiny body, smelled his hair, kissed his head. We all were shocked at how tiny he really was- 6lbs 4 oz and 18 inches long was far smaller than anyone guessed. Abby and Ashylnn were begging to hold him the minute he was out, and Ashlynn was rubbing his head the second she could get close enough to touch him.
Curling up in bed with my family after he was born was one of the most wonderful, peaceful moments of my life. Max was curled up peacefully on my chest, my girls and my husband snuggle around me. I was elated, and turned to my husband and exclaimed “I did it!” I have never felt such a sense of elation, accomplishment, satisfaction and contentment.
I am so grateful that I was insistent on a home birth. If I had been in a hospital, they would have forced pitocin on me the first time my labor stalled out, a week before he was born. I don’t know how he would have reacted to the pitocin, and he was so tiny, I can’t imagine what he would have been had he come a week earlier. If I were in a hospital, they would have taken him from me when he wasn’t breathing instantly at birth, robbing us of those precious wonder-filled moments. He almost certainly would have been diagnosed with craniosynostosis at birth, which would have thrust us into the chaos of doctors and specialists before we were able to get to know and bond with our baby boy. I am so grateful, that despite all the difficulties during the labor and birth, that he was able to be born at home. And I am so grateful that I had Jules Johnstun, such an amazing midwife, and a supportive birth team that helped to make Max’s birth such a fulfilling and amazing experience.
Friday, July 17, 2009
Balance to be paid: $42,266.80
Billing adjustment: -$.03
Gosh. They are so generous. Its a really good thing they knocked off those three pennies, because $42,266.83 just wasn't in the budget. I think I'll go write and mail that check right now...
Tuesday, July 14, 2009
Good to know that I'm raising another child who can't/won't/doesn't like to nurse in conventional positions. I see a lot of contortionist-style breastfeeding in our future.
And yes, he did in fact pull himself to a standing position to nurse like that. And yes, he's only eight months old. (As of yesterday!) And no, I didn't say it was okay. My naughty boy. Getting all grown up without asking.
Saturday, July 11, 2009
Turns out that my worries post-op are just as pronounced as worries pre-op. Turns out that I obsess about Max's head at least twenty-five times a day. Turns out that there hasn't been a day when I haven't worried about him having another surgery.
And it turns out that once again, things never go quite as I expect them to.
Ever since Max's swelling decreased enough for me to see the finished product, I haven't been thrilled with the results of the surgery. I was prepared for this- I had read stories of lots of moms who freaked out over every little bump and I swore I wasn't going to be one of those moms. But I started taking weekly pictures, some of which I've posted here. About four weeks post-op, I noticed that his ridge between his eyes had returned. In the eight week post-op pictures, I thought that his head still looked a little triangular, and spent about an hour comparing pre-op and post-op pictures and scrutinizing them for differences.
In the past two weeks, Max's head shape has changed even more, to the point where it is looking almost as it did before surgery. Although the ridge down the middle of the forehead is less pronounced, its still there. His head is tending more and more towards that triangular shape every day. And he once again has significant narrowing above his eyebrows- we refer to that as pinching. Finally, I couldn't handle worrying about it anymore, and emailed some pictures to his surgeon. Wanting to cover my bases, I also emailed some pictures to a renowned cranio-facial surgeon, Dr Jeffrey Fearon, in Dallas TX. Quite a few women on the Cranio board have been patients of his, and he is more than willing to give opinions over email. (Yeah, I know. I sent pictures off to an "Internet doc." But he's THE expert on craniosynostosis surgery. Rather than being a plastic surgeon who does boob jobs and tummy tucks, and an occasional cranio surgery on the side, Dr Fearon does exclusively children's cranio work. People travel from all over the world to work with him. I've seen him not recommend surgery, I've seen him tell parents to watch and wait, and I've seen him recommend surgery. So I felt pretty comfortable asking for his opinion.) Less than 48 hours later, I got this reply:
Thanks for your e-mail. I looked at the pictures that you sent me of Max, and I do have to agree with you that he doesn't really look all that different, aside from the scar across the top of his head. I agree with half of the advice you have gotten, which is to wait. As for the watch part, I do not expect it to get better. We recently published a study that showed that after surgery, children with single sutural synostosis (like metopic) do not grow normally after surgery, with a tendency to grow back slightly toward the way
they were before surgery, over the course of many years. We recommended
slightly over-correcting at the time of surgery to help avoid the need for a
second operation. It is my impression that Max did not get an adequate
correction, and I would not expect it to get better. I am sorry to say
that based on what I can see in the pictures that you sent, I would recommend repeating the operation, but I would suggest waiting at least 9 months from the last operation to let him heal in completely. I would be happy to either take care of your son, or just offer advice (by e-mail,phone consultation, or office visit), whatevr you prefer. Although you didn't tell me who did the initial surgery, I would recommend considering going to a different surgeon for his next procedure.
I was stunned. I felt like I had been sucker-punched to the gut. Although for weeks, my mother instinct had been telling me something wasn't right, I kept expecting that I would be told "Its normal, and you have nothing to worry about. And here I was being told the exact opposite.
We resolved not to do anything until we heard back from our surgeon. He told me exactly what I thought he would- "Its normal, things are progressing the way they should." The problem is, I know they're not. I've been following the pictures of other boys who are Max's age and had surgery about the same time, and the differences are dramatic. Max's head is triangular again! So I pushed the issue, explained to him that things had changed significantly, even in the past two weeks, and he asked for another round of photos. Problem is, he's going out of town for a week, so won't even look at the photos until then. Sigh.
So yesterday, I say Max down for another round of pictures.
Can you see the peak in his forehead? The triangular shape, referred to as "trigonocephaly" is what the surgery was supposed to repair.
This is the picture that really shows it. You can see his forehead coming to a point, and you can see the pinching right above his eyebrows, as well as the narrowness/hollowness of his temples. All of this the original surgery was supposed to fix.
I knew that things weren't right with Max, but when I saw these pictures, I had a good long cry. Because I knew that if I were looking at these pictures for the first time, I would think that kid had metopic synostosis and was going to require surgery. And then I realized that no matter what my surgeon says, we are likely going to have to repeat this entire process.
A few hours later, I got an email back from my surgeon's nurse saying she could see exactly what I was talking about and she would show these to the Doctor right away. I hate the waiting part.
So I sent these pictures off to Dr Fearon in Texas, and set up a consultation for a second (or is it third?) opinion with another cranio-facial surgeon at Primary's. We've actually kicked around the idea of traveling to Dallas to make sure the surgery gets done right the second time...
So it turns out my friends at CranioKids were right. It is a roller coaster. One I thought I would be exiting a long time ago, but it turns out the roller coaster is just gearing up for another go-round.
Tuesday, July 7, 2009
Helpful hint #1: If you are a nursing mom, and you anticipate that you might be riding a four wheeler over some bumpy trails, do yourself a favor and buy a good supportive sportsbra. Just trust me. You, your nursing babe, and most likely your husband will thank me later.
Helpful hint #2: On a sunny day, when you are going to be four-wheeling, boating, and just hanging out in the sunin general, bring the sunscreen. And so you know, bringing the sunscreen isn't enough. Neither is making sure that each of your family members has been slathered in so much sunscreen that they're starting to take on a creamy-white appearance. In order to avoid your skin turning roughly the color of a fire engine, you have to remember to actually put the sunscreen on yourself. Who would have thought? (I'm a smart one, I is. A very, very sunburned smart one.)
Sunday, July 5, 2009
We spent the weekend of the 4th with my parents in Torrey UT. Its a small town in every sense of the word, and as part of the celebration, they had both a pie eating contest and a pie making contest. This year, my family decided to jump in with both feet. Or maybe that should be we decided to face plant into the pies. Check that. Tom and my brother, Kevin, decided to face plant into the pies. The rest of us watched, cheered, and tried not to hurl.
It all started out so innocently. A local chef bakes apple pies that weigh roughly 5 lbs. Then you add a few scoops of ice cream. Then the innocence ends. Because each pie gets measured to the ounce, then the object is to shove your face into the pie and down as much pie and ice cream as you can in five minutes. No puking allowed.
Getting psyched. The prize was $100.
Are we done yet?
But really, to grasp the essence of the event, you have to watch at least some of the video. Tom and Kevin both ended up eating just about two pounds of pie and ice cream. In five minutes. The winner ate almost four pounds of pie!