Update on Max and a Few Videos, Too

Last Thursday we were able to meet with a neurosurgeon at U of C and after seeing Max for literally just five seconds he was able to tell us that Max did, in fact, have sagittal suture craniosynostosis.  Even though we were almost 100% sure that he did (based on the x-ray results and other research we had done) it was amazing to me how quickly a specialist can spot these things, especially when most people probably wouldn't even notice his head being misshapen.

On January 9th we are scheduled to meet once again with the neurosurgeon and also with the plastic surgeon he works with (he will be involved in the cosmetic outcome of the surgery) and Max will also undergo the CT scan at this time (by January he will be old enough that he will not require an overnight hospital stay if he has to be sedated, which is why we ended up not doing one this time). At the end of January he will undergo surgery. From what I understand, he will have to be in the hospital for at least several days following the surgery. We of course wish he didn't have to go through any of this, but we are so, so grateful that this is something that can be fixed and will almost certainly not cause lifelong problems.

Anyway, that's the update on Max's head.  I thought I'd also share some recent videos. Sorry some of them are a bit long...I am too lazy to edit.

Here is Jesse showing Max one of his books. He sounded a little bit like a broken record :)



Here are the boys bonding.



This is Jesse one night after dinner (well, we had finished eating, and Jesse was mostly done, but had to eat a few more bites if he wanted a piece of Halloween candy). I've Been Working on the Railroad is one of Jesse's favorite songs these days.



And here are Jesse and Max in their matching pajamas. We spent almost all day Saturday doing our big monthly grocery shopping trip (Wal-Mart and Costco) and picked up some matching pjs to reward Jesse for his patience. Jesse was trying to rock Max, but it was a little rough and looked more like he was trying to wrestle him.



Jesse was in quite the funny mood this weekend and I had to write a few of these quotes down. Friday night we had to buy a few clothing items so we drove up to the north side of Chicago and just made an evening of it.  After shopping we took advantage of 49 cent ice cream cones at McDonald's. Jesse loves to talk about the hand dryers in public bathrooms, but he is also sort of terrified of them. James went to use their restroom at one point and while he was gone, Jesse was asking me if James was going to use the hand dryers. I told him I didn't know but that he could ask him when he got back. So when James walked out of the bathroom, Jesse very loudly and audibly yells across the restaurant, "Daddy...You did it??!!".  Of course Jesse was referring to using the hand dryers, but it probably sounded like he was talking about bodily functions instead.

At Wal-Mart on Saturday Jesse was getting a little hyper in the shopping cart and began saying all kinds of crazy things. I think within 5 minutes he went from saying "I love Max...I just want to snuggle him all up" to "I want to KNOCK Max out of there (referring to the Baby Bjorn which Max was sleeping in at the time) and put him on the conveyor belt (to buy him, I believe)." Then later he informed us that Max costs "exactly ten dollars". I have no clue where he gets some of his "violent" talk...we don't talk like this and he watches very little TV (and the only things he does watch are very tame...basically just Curious George and Bob the Builder), so my only guess is that it's a boy thing.  He is very into knocking things over and dumping things out.  He told me at the produce store the other day that he wanted to knock one of the displays over. Thankfully he has not yet acted on any of these ideas.

And then for lunch on Saturday we were again at a McDonald's and Jesse spotted an elderly man a few tables away. In a very loud voice he says, "Mommy, is that an old guy over there?" I don't remember exactly what I said, but I think I just tried to distract him. Then he went on to say (again, loudly), "Mommy, what kind of guy is that over there?"

Max: One Month

Is Max really already one month old? This month has passed by so quickly and it all seems so blurred. I feel like these newborn days are quickly coming to a close. Here are a few notes about Max's first month of life.

• At his one-month appointment (two days ago) he weighed 13 pounds 7.5 ounces, measured 23 inches long, and had a head circumference of 41.6 cm. I don't know the percentiles for these, but I know that at his two-week appointment he weighed 11 pounds 4 ounces (97th percentile), measured 22 inches (93rd percentile), and had a head circumference of 39.5 cm (off the charts big), so I'm assuming that his percentiles are still comparable.
• He is wearing 0-3 month clothes but the tops are getting pretty tight, so we will be stepping up to the 3-6 month size soon.
• Sleeping is going well. Other than a couple nights, he has never woken more than once in a night (when I say night, I mean the length of time we would normally sleep, from 10 or 10:30 PM until 5 or 6 AM). We were waking him up every 4 hours at night for the first two weeks until we knew he had regained his birth weight (ha...if only I had known he was surpassing it by 2 pounds I wouldn't have gone to the trouble), and of course as luck would have it, as soon as we stopped waking him, he began waking up twice in the night for a couple nights, but luckily that was short-lived. We have had a few nights where he has done a 6-6.5 hour stretch, and two nights ago he "officially" slept through the night, giving us a solid chunk from 10:30-6:00.
• He is becoming increasingly more alert during the days. His most alert times are first thing in the morning, from the time he wakes up until mid-morning when he usually goes to sleep again for a good length of time, and then again after dinner until our bedtime he is very alert and only takes some short cat-naps (even when we try to put him down for a more decent nap, he just won't stay asleep for very long). This is nice, though, because it seems to get him good and tired for a good night's rest. Basically from mid to late morning until dinnertime he is either sleeping or eating; his alert moments during this time of day are still pretty short.
• Nursing is going well. Unlike Jesse he caught on right from the start, but he did have a lot of trouble the day after we brought him home from the hospital and wouldn't latch all day, so I ended up having to pump and use a soft spoon feeder to feed him. He did mostly fine after that. I would guess that he eats anywhere from 7-9 times a day, but I haven't kept records like I did with Jesse. Around weeks 2 and 3 he was doing a lot of cluster feeding in the evenings before bed (read: basically wanted to eat all evening), but he is doing less of that now.
• His temperament reminds us of Jesse so much. He is fairly fussy and particular about how he is held and handled. We know that his quiet, content alert moments are short-lived (anywhere in the ballpark from 5-30 minutes) and then he will get fussy again. He is rarely inconsolable, however; usually rocking him or bouncing him or nursing him will do the trick to get him peaceful again. He keeps us on our toes for sure.
• Tracks objects, and just today I really began to notice that he watches Jesse. Jesse was going back and forth between his bookshelf and the couch and Max's eyes were following him wherever he went.
• We've gotten a few true smiles, but mostly just the sleepy ones.

Overall Max seems to be a healthy, growing little boy.  Unfortunately, though, we did get a little bad news at our check-up yesterday.  When Max was born, the doctor in the hospital showed us a ridge on the top of Max's head. He explained that most of the time this occurs from the plates overlapping for the head to fit through the birth canal and that after several weeks the ridge resolves. Sometimes, however, the ridge doesn't resolve and it means that the plates fused together prematurely (they are supposed to stay separated for several years to allow for the rapid head growth that happens during the early years).

I mentioned this at Max's check-up when he was 5 days old, and the pediatrician (not our pediatrician because she was on vacation at the beginning of October and couldn't see him for his first appointment) said that nothing was odd about his head.  I'm not sure if she didn't notice the ridge or if she just assumed it would resolve itself.

At Max's 2-week check-up I decided to bring it up again, since we were now seeing his actual pediatrician, and I figured it wouldn't hurt to have another opinion. She did feel it but wasn't too concerned and just said we'd keep an eye on it.

At his one-month check-up I wasn't even thinking about it, but then I noticed that she was spending a lot of time examining his head. Again, she said she wasn't extremely concerned because his head growth is normal, and babies with this condition often have poor head growth.  She got another doctor (the one we had seen at his 5-day appointment) to come in and examine him just to get a second opinion and she again wasn't worried and said that if it were a problem he would have strange bumps on his head.

Our doctor had decided that it probably wasn't necessary to do an x-ray of his head (and that we could just watch it and do one later if there were still a concern), but she left it up to me.  I had pretty much decided that it wasn't necessary, too, but she said something about being only very slightly concerned and I figured that even if it was only a slight concern, we should just go ahead with the x-ray, even if it was only for peace of mind. We got the x-ray done right after his appointment and later that evening I heard back from our pediatrician letting me know that he does in fact have a partial premature fusion of the sagittal suture (the sagittal suture runs along the top of the skull, beginning at the soft spot on the front and running to the back of the head).

After I had returned home from the doctor's office that day I began to read about all of this online and when I saw pictures of babies with this condition, I felt like I immediately knew that he had this, because his head shape looks exactly the same, though not quite as extreme as some of the babies I saw (narrow and elongated on top and a pronounced forehead in the front, caused by the brain not being able to grow in the proper direction). Several weeks ago, James and I had actually noticed that his head looked really long and that his forehead was kind of large, but we just assumed it was a normal newborn look (and honestly, I don't think most people would notice it right away anyway, but I could just be a very biased Mom).

The actual medical term for this condition is called sagittal suture craniosynostosis. Our next step (next Thursday) is to have a 3D CT scan performed on his head and to consult with a pediatric neurosurgeon at the craniofacial clinic here at University of Chicago (where Max and Jesse both go to the doctor). The good news (from everything I've read about this) is that it can be fixed with a surgery that involves separating the plates of the skull so that the head can grow normally and not cause problems for him later in life (problems like developmental delays, headaches, increased pressure on the brain, visual/hearing problems). At this point, no one has told us that he for sure needs surgery, so I don't want to assume too much (I think there are some cases that are considered so mild that no correction is needed, but because his head is already misshapen, I am doubting that this will be the case). Of course, the bad part is that no one wants their child to ever have to go through a surgery like this. We are super thankful, though, for good doctors and medical care, and thankful that this has been discovered early before any damage could occur. Please keep Max in your thoughts and prayers. We are praying for the appointment this coming Thursday, that the doctor would have wisdom in deciding what the next steps are and for the timing of everything.

Now, onto brighter and happier things, here are some pictures that I took on Max's one-month birthday. Enjoy!

Jesse wanted to join the photo shoot when he woke up from his nap. Max thought Jesse's head was a food source, and as you can see, he wasn't too happy when he realized that it wasn't.

Jesse was in a particularly happy, cooperative mood for the camera. This is the face he made when I asked him to give me his biggest smile.

Trick or Treat

Jesse had a great time trick-or-treating in our building again this year. I think he was a little bit bummed at the end, though, when there were no fires to fight. When we got home he said something like "I wanna go to a different building now...one that have fires."

This door had a button on it that made the spider start moving its legs. Jesse thought this was wonderful.

We found some more trick-or-treating friends on our trip through the building. Everyone liked playing with Jesse's loudspeaker.

Jesse had fun sorting his candy and seeing what all he got.

Max was pretty upset that he didn't get any this year.