Max: 5 Months

I missed the 4-month update, but want to take a minute to document what has been going on in Max's world for the past couple months.

The surgery has been the biggest thing since his last monthly update. He has continued to recover wonderfully. If it weren't for the scar on his head, I would probably not think about it very often.  It seems like a distant memory now, and it was really only a small hiccup in his first few months...he hasn't really missed a beat. One of these days I'll get around to posting the rest of the posts about his surgery (they're all written up but I haven't added the pictures).

Stats
At his 4-month check-up he weighed in right under 19.5 pounds and was 27.25 inches long, both 98th percentile. His head continued to be waaaay off the charts at 18.5". He also has two teeth that just (a few days ago) came through on the bottom. They have seemed to bother him some during the days, but haven't interrupted his nighttime sleep so far.

Eating
He nurses maybe 6-7 times per day.  I recall Jesse having put himself on a pretty predictable 5 meals/day routine by this point, but Max has not. He probably eats more often (every 2-3 hours instead of every 3-4) than Jesse did, but then again I have less energy/desire to try every trick in the book to make him stop fussing when he gets a little cranky so I just do what I know is going to work.

Night Sleep
The month of January and the first part of February were a little rough in the sleep department. Considering all that Max went through, his sleep was really not too terrible, but between the sickness he experienced after the holidays and the surgery at the end of the month, he had more issues than previously. Thankfully, those issues seem to have resolved themselves now.

A couple weeks after the surgery we also experimented with putting Max in Jesse's room. We converted Jesse's bed back into a crib and let Jesse sleep on one of our air mattresses on the floor. Max was (mostly) sleeping through the night, but we were still having some issues since the surgery, so we thought maybe he would sleep better in a different room and in a real crib rather than the pack and play.  This did the trick and since then Max has not turned back from sleeping through the night again. He also began going down much earlier (6 or 6:30 PM).  So now he is going down around 6 or 6:30 p.m. (he really has trouble making it much past this point) and sleeps until 6 or 6:30 a.m. If Jesse naps, he doesn't go to bed until 8 or 8:30, so by this time Max is in a pretty deep sleep and isn't disturbed by Jesse making a little noise flipping through books as he goes to sleep; if Jesse doesn't nap, Jesse goes to bed around the same time as Max and this seems to work just fine, too.

Naps
Naps are still not amazing, but he is on a pretty predictable routine of 3 naps per day. He can comfortably have about 2 hours of awake time before he needs another nap, but it usually works out that we stretch that time a little bit between his last nap and bedtime. He takes naps at roughly 8:30, 11:00 and 2:00, but that varies depending on how much we need to get out and about on a given day.

Play/Milestones
Max enjoys his toys and putting all toys in his mouth. He still loves the bouncy seat, but also tolerates some time on the blanket and under the play gym each day. He enjoys just being held much more than Jesse ever did; I think this is partly because he has lots of activity (aka Jesse) to watch. He loves watching Jesse and will just smile and grin at him all the time.  He has the sweetest little smile/laugh and loves to be tickled on his shoulders.

He rolled over once from tummy to back last week, but hasn't done it since. He can nearly get from back to belly, but gets stuck on his arm, so he hasn't quite made it all the way over yet, but he is almost there. He can sit unsupported for about 5 seconds or so.

Temperament
Max is definitely a much more content, laid-back baby than he was the first three months of his life. Ironically, the most content he has ever been were the few days after he got home after his surgery.  He was just SO content and hardly fussed at all. I would say that he is somewhere in the middle now. I think he gets bored sometimes and will be happier once he can move and explore a little bit (or maybe once the weather gets warm enough that we can get out of this apartment more often and he can see something other than white walls...ha).

Max has recently discovered his thumb.

Max was listening to Jesse "read" Sleeping Beauty. That's some male bonding time for you.

Sweet brothers.

Another picture of Max adoring Jesse (and sweet baby feet).

Max's Video

When we found out that Max had craniosynostosis and would need surgery, I began scouring the Internet for information, mostly looking for blogs and forums where parents shared their own kids' journeys through craniosynostosis.  I wanted to know what to expect, from the actual surgery itself to the hospital experience to the recovery period afterwards. I came across a number of videos that were helpful in preparing me for the whole experience.

I decided to put together a video of Max's journey so that others who are going through the same thing might benefit from it, but also so that Max can look back on it someday and see everything he went through at such a young age. It's a huge part of his story so far.

While in some ways I feel that this experience is trivial (when compared to children who are fighting terminal illnesses or other more serious conditions), it has still been huge for our family.

So, if you're interested, take a peek at Max's journey from birth to diagnosis to surgery to recovery. It's a bit lengthy, so if you're really just wanting to see the parts about his surgery, then skip to the 4.5 minute mark.

Max's Pre-Op

Note: This was written last week, five days post-op.  I am just now posting it.

The past week has been such a blur, in a good way. Thank you to everyone who prayed, for all the encouraging e-mails and texts, and for keeping our family in your thoughts on Monday and through this week.  I just can't believe that Max's surgery was only five days ago. We are constantly in awe at his recovery. It really does seem like a miracle to me. Aside from the huge ear-to-ear scar that is left on his head, there is very little evidence of what our little guy has been through.  If you were to cover his head with a hat, no one would ever suspect that less than one week ago this happy, smiley baby went through a major skull surgery. Babies really do bounce back so quickly.

I wanted to document this past week (mostly for us, but for anyone else who might care to know any of the details, too). Maybe some day Max will want to know more about this event, and so I want to write it all down now before I forget the details.

The Thursday before the surgery we went in for Max's 3D CT-scan, blood work and a pre-op visit with his neurosurgeon. We were supposed to do this weeks before, but since he had RSV at the beginning of the month, and because it's always possible that an infant would have to be sedated for the scan, they postponed this appointment to make sure he was totally recovered from the virus so that he could be sedated if need be.

We showed up for the scan at 8:30. It had been nearly 12 hours since Max had eaten. He wasn't allowed to have any breastmilk after 4 a.m. and I decided not to wake him to eat before then, so he had to have been starving.  He did great, though. It really couldn't have gone better. They got us right in for the scan and they strapped him into an infant immobilizer (in an attempt to avoid sedation).  He was screaming and quite mad, but when they handed him over to me so that I could try to calm him down, he just closed his eyes and fell right asleep (it was actually time for his first nap of the day, so the timing was perfect). I was able to lay him down for the scan, which took about 5 minutes, and he didn't wake until we took him out of the immobilizer.

Then it was time to draw some blood to make sure that all of his blood counts came back normal before the surgery. Apparently pudgy babies make this process pretty difficult. They poked him several times (all the while he was kicking and screaming) and then finally had to go get somebody else to help find a vein.

I was able to feed him after all of this, which made for a much happier Max. After feeding him we went to our appointment with Dr. Frim, his neurosurgeon. His resident went over the surgery with us, giving us all the details on what they would be doing to his skull, and of course made us aware of all the things that could (though would not likely) go wrong with a surgery like this. We weren't surprised, but it was still tough to hear all those things, and it made me want to back out a little bit. I kept reminding myself that this needed to be done and was for his own future good. Jesse was also with us that day, and he did wonderfully all things considered. He was supposed to stay at a friend's house, but his friend got sick, and so we just decided to bring him along.  There were so many viruses going around that we felt like it was too much of a risk to let him go to someone's house a few days prior to the surgery, for fear he might catch something and pass it on to Max.

Since most infants who undergo this surgery require a small blood transfusion, James and I then attempted to donate blood for him. Unfortunately, diabetics can't donate and my hemoglobin was a bit too low, so we were unable to do so. On the bright side, Dr. Frim told us that statistics actually show that non-directed donations tend to be slightly safer anyway (maybe because family members feel some amount of pressure to donate blood for a loved one and have a tendency to fudge when they answer some of the questions before donating).

The remaining days before the surgery we kept things pretty simple and continued to avoid getting out (not that we would have wanted to in this crazy cold winter). The week or so before the surgery I turned a bit psychotic when it came to germs or any kind of exposure to sickness. I doused Jesse in hand sanitizer any time we left the apartment and we basically didn't see anybody that whole week, other than at his doctors' visits. It was pretty lonely around here, but I just couldn't risk exposing him to any viruses going around, as it was very important for him to be 100% well for the surgery.

I also took some pictures of Max's head so we could have a good before and after.  Here are some before pictures. You can see that it is very long and narrow when viewed from above. His forehead was actually pretty normal-looking (sometimes the forehead looks obviously misshapen in babies with sagittal craniosynostosis), so the surgeons didn't see any need to do work on the front (a great thing, since surgery around the forehead would have caused more blood loss and probably even greater swelling).

This picture was taken the week before the surgery. If you look closely you can see the ridge running down the middle of his head. That is where the plates fused together (the sagittal suture).

The following pictures were taken around Thanksgiving. You can see the long (front to back) shape of his skull and how the back goes down lower than the front (it should be the opposite).

 

Jesse's Third Birthday

We did something a little different for Jesse's birthday this year. Instead of a big party, we decided to do something fun together as a family that we wouldn't otherwise do. Since Jesse has been pretty intrigued by the Willis Tower for months and months (maybe even the whole past year, but I can't remember when it all started), it seemed a no-brainer that we would take a trip downtown and go up to the top.  Of course, we made sure Jesse liked this idea, which he did :)

Jesse's birthday was on Sunday this year, so we decided to go on Saturday, so that we didn't miss church and also because he could get in for free until his third birthday. We took the train downtown, which is also a special treat for Jesse. This did force us to walk nearly a mile from the train station to the Willis Tower in the cold, but Jesse stuck it out and made it, and Max rode snugly in the baby carrier.

The tower opens at 10 a.m. and we arrived a few minutes early, to be greeted by a few workers showing us pictures of what it would look like from the top with zero visibility (it was a very cloudy/rainy/dreary day). They wanted to make sure we knew that the view would be mostly clouds and that tickets were still full price. I felt like they probably thought we were silly to be going up on such a day, but I told them that it didn't matter because we had promised it for Jesse's birthday (and there was no way we were going to let him down after hyping it up for so long). It was nice that I let it slip about his birthday, because they told us to be sure and let them know at the ticket counter so that he could get a special present for his big day (he got a huge button to wear, which you can see in the pictures). The nice thing about going on such a cloudy day was that we didn't have to wait in line for tickets and it wasn't crowded at all at the top.

We spent a little while perusing some of the exhibits down below (as much as a 3-year-old would allow) and watched the short video, and then we got in line to ride up to the top. Jesse was pretty excited the whole time, and as soon as we got to the 103rd floor he ran straight for the big glass boxes that hang above Wacker Drive.  He had no fear at all, but I, on the other hand, could barely put one foot over the edge.

Since his own Mother refused to get out on the glass ledge for her son's special birthday adventure (and James couldn't handle more than a brief walk on it), Jesse made some new friends out there. These tourists were eager to get their pictures taken with Jesse. At first he said no, but then he warmed up to them and obliged.

After spending a little while in the tower we headed across the street for a lunch at McDonald's, and then we walked back to the train station to catch our ride home.

It was fun and memorable to celebrate Jesse's birthday this way, and he definitely had the time of his life.

Even though we didn't do a real party, I wanted to do something special with our community group Sunday night, since that was his actual birthday. Two of Jesse's best buddies are in our group, so it was kind of like a mini-party without the decorations and games. We usually have dinner twice a month with our group, so I made all of Jesse's favorites: hot dogs, homemade macaroni and cheese, strawberries and blueberries, and chocolate cake. Jesse looked so happy when we all sang "Happy Birthday" to him (actually, he started us off with the singing...ha) and he got to blow out the candles for the first time.

Max: 3 Months

Max's third month was full with Christmas, travelling to Arkansas, and his first illness.

The Sunday after Christmas when we were driving back from Arkansas both boys began getting congested and by Monday Max seemed pretty pitiful and miserable.  He continued to get worse throughout that week and by midweek he was wheezing and having trouble nursing because he was having to work so hard to breathe, so we took him to the doctor and they confirmed that he had an RSV/bronchiolitis infection.

RSV can linger 3-4 weeks in babies Max's age (and it can also be pretty serious, so we're thankful it never got that scary for him), so we will be going in for a follow-up next week to make sure he is completely over it and in good shape for the CT-scan on the 23rd (which had to be rescheduled since they didn't want to sedate him while sick) and for his surgery, which is scheduled for January 27th. I am praying that he will be 100% by then, because our Moms are planning on flying in the weekend before the surgery to help, and also because I am just ready to get this big surgery over and done with, as it is something I have been dreading. He was back to his normal self after 5-7 days, but the cough and chest congestion lingered for a couple weeks. Right now he seems totally fine to me, but we will see what the doctor has to say next week.

Anyway, enough about sickness. Here are other things that Max is up to.

Stats: He was somewhere between 17 and 18 pounds when we took him into the doctor right before the 3-month mark. His length was 25.5 inches.

Eating: Eating is about the same this month. I think he eats probably 6-8 times in a 24-hour period. He doesn't eat during the night, but it's not unusual for him to wake up sometime in the 5:00 hour to nurse and then go back to sleep. I feel like in the past month he nurses much less for comfort than he did at the beginning, because if I try to feed him too soon, he gets very angry.

Night Sleep: He has continued to sleep great at night, although that did not hold true (understandably so) for his illness, when he was waking sometimes 5 times per night.  We have gotten him to an earlier bedtime, so now he goes down around 8:00 and sleeps until sometime between 6:00 and 8:00. Typically, he doesn't wake at all, but if he does, it is around 5:00.

Daytime Sleep: His naps are so-so. While we were in Arkansas his naps were terrible and we couldn't get him to stay asleep for more than 30 minutes most of the time, but he has adjusted back to a better routine now that we're home, and he is taking decent naps, though they are not fantastic. I think he naps 4 times, though sometimes it might be only 3. His best nap happens first thing in the morning.

Play: Max is really enjoying his play gym these days, and he also loves to observe everything going on around him from the bouncy seat. Over the past week he has been working on grasping objects (like his links) and he loves to study his hands and fingers. He still really dislikes tummy time.

Temperament: This little guy has me puzzled.  He began life just like his brother, very particular and quite fussy/hard to please, but with a few exceptions over the past few weeks, he has become quite the content/go-with-the- flow kind of baby. Even with his illness, there were only two or three days where he acted really miserable.  After that, it's like things flip flopped; he became super happy during the days, but a horrible sleeper at night. I'm hoping we can have both, so we'll see if this peaceful temperament thing continues. I just can't get over it when he is content to sit in the bouncy seat for nearly an hour while we watch tv or while we make dinner or play with Jesse...it's not something I'm used to from my experience with Jesse.

Max: Two Months

Here's what Max is up to at 2 months.

Stats

At his check-up he weighed 16 pounds and 7 ounces (off the charts) and measured 24 inches (90-something percentile).

Eating

He eats roughly every 2-3 hours during the day.  I'm really not sure, but he's probably still eating 7-8 times in a 24-hour period. He does eat more frequently in the evenings, but he's not really cluster feeding anymore. He has also taken 3 or so bottles.  I need to be more intentional to do this at least once a week so that he won't begin rejecting them like Jesse did.

Nighttime Sleep

He is sleeping wonderfully at night. He typically goes to bed around the time that we do (10:00 or 10:30) and usually wakes between 6:00 and 7:00.  Sometimes he wakes between 4:00 and 5:00, but goes right back to sleep for several hours after eating.  More often that not he makes it through the entire night, which we are very thankful for. 

We are trying to put him to bed a tad bit earlier, but have only been successful once. Last Friday night he went to sleep for the night at 9:00 and it was great to have an hour without kids, but other times when we have tried this he won't stay asleep. I know we will get there in time, and this is just a season, so we'll try to enjoy the extra time we get with just Max while we have it :)

He is also still sleeping in his bassinet in our room, but I think we will be transferring him to the pack and play very soon because he is outgrowing the bassinet.

Daytime Sleep

He is definitely out of that sleepy newborn stage where he can sleep through anything. He typically takes one quite long (2-3 hour) nap during the day, which for the past week or so has lined up perfectly with Jesse's afternoon nap and has given me some time to myself. This past week he also took a decent nap (1 hour) in the morning most days about one hour after waking.  He usually takes a few other naps, but they are much shorter and he seems to wake very easily if there is any noise (which you can bet there is with Jesse under the same roof). He mostly takes naps in his swing, but for his long afternoon naps I usually swaddle him and put him in his bassinet because I think the swaddle helps keep him asleep for longer periods and I am wanting a break by this point in the day!

Temperament

He is still much like Jesse in this department.  He is either extremely happy and smiley or quite fussy. He is definitely having longer happy, content periods (probably better ones than Jesse had) where he is great sitting in his bouncy seat or lying on a blanket while we eat or while Jesse plays. He has the sweetest coos and will go back and forth with us cooing. I love it!

Here are some pictures from the last month.  Well, actually, most of them (all but the last five) were taken by James' Mom while they visited over Thanksgiving.