The $64,000 question...

How much is a 10 day stay in the NICU at CHOP? Literally, $64,038.23. I'm not sure that even includes Oliver's surgery or any of the diagnostics (ultrasounds, MRI, etc.). I've been waiting for this Explanation of Benefits from my insurance company and it finally came. And in what is a true praise to God, they paid for it. I knew it was going to be high, but I really had no idea.

Ironically, I spent a good deal of time today trying to sort through charges that the insurance company did not pay. It turns out bills just need to be resubmitted and they will take care of it. But just when I was low on liking my insurance company, they really pulled through.

I just had to share.

Just an update from yesterday: Oliver has bronchitis like Mac. Poor little guy. We had to get chest x-rays to rule out pneumonia, which we did. So now he's just layin low and getting lots of love from mommy (not to mention the nebulizer treatments).

Really, my insurance company must hate me.

Another day, another doctor...

It's gotten to the point where I'm embarrased to call the pediatrician's office. But each time I go in, the kids really need it.

The week started off with a visit to the office for Mac. I didn't take her with me Friday and she wound up getting a worse cough over the weekend. So I took her in Monday and found out that she had a bronchial infection. Because she loves her little brother sooo much, she decided to share it with him. It started a little bit yesterday, but today it is full-fledged. The little man sounds like he smokes 5 packs a day. It's really heart breaking to hear. So as soon as the doctor opens today I have to get him an appointment.

Yesterday was a pretty exciting day. Middlesex county services came out to evaluate Oliver, and he qualifies for a program that provides in-home care as often as I like. It will be physical therapy for now, and can include other types of therapy (speech, etc.) if he needs it. I'd like to brag for a second here -- although he was delayed in fine and gross motor skills, his attention and communication skills were at or above age level. Yes, the comparisons start already! I do realize that it is ridiculous to get giddy about a 2 month old being at or above age level, since that doesn't mean much at 2 months old, but it made me soo happy. Such a dork. But anyway, what they found was that he has soft muscle tone in his trunk. We never even thought about that since we are so focused on his legs. They said that this could be contributing to the reflux, because the muscles aren't tight enough to really push/keep down the food. Interesting, right? So now I have some exercises to strengthen his midline, too. This is going to be one strong guy!

Went to CHOP for casting yesterday and waited for almost 4 hours. But I didn't even get upset -- I just expect it now. I took some research for work and read for a couple of the hours, and when Oliver woke up, we played. So it was actually productive. And even better, we met another baby with spina bifida. Whenever I'm in the waiting room, I kind of eye up all of the other patients trying to figure out if anyone has spina bifida. Now when I'm in spina bifida clinic, it's pretty easy, although they share a waiting room with other clinics, so nothing is a given. But in orthopedics, i think it is a pretty safe bet that any babies with casted legs also have spina bifida. I'm also starting to recognize some repeats. I had never seen this particular baby before, but the grandfather was carrying him around and came over and started conversation with me. It turns out his lesion was the same level as Oliver's and his feeling level is the same. The only difference seems to be that he had a shunt put in at three weeks. He was there getting his casts off from the surgery that Oliver is set to have in December. It was cool to talk to someone else in the same position. The mother looked young. She said that this is her first baby. I have to think that spina bifida is even more overwhelming in your first child -- not only do you have to learn how to be a parent, but you also have to deal with all of the extras.

Some exciting baby news:
Oliver slept through the night 2 nights in a row. Yay -- hopefully this is the beginning of a trend.

Something that will surpriste no one:
Sniper jumped into the pack n play and peed in it twice. Really I almost killed her.

Another busy week gone by...

Check out these apple dumplings!

Time flies when you're having fun!

Time really has been going by so quickly. Oliver is almost 10 weeks old already! He just had his 2 month check-up today. He got a clean bill of health, except for some suspected reflux. So he has to start taking zantax. He is up to 11 lb. 14 oz. already, and that is without casts. The doctor said that all things considered, he looks great. I would have liked the "he looks great" without the caveat, but I'll take what I can get :) He also only had to get one shot today. I've been seriously debating whether or not to vax him on a delayed schedule -- there has been a lot of attention to the possible side effects of vaccinations, including autism. It is scary to think about what you are injecting into little babies. However, living where we do, I think it would be unwise to leave him unprotected against a variety of preventable illnesses. So I've really been debating. Breaking up the vaccines seems to be the wisest choice, since it allows him to be vaccinated without injecting too much at once. Even in his 1 shot today, he got five separate vaccines. I actually didn't realize it was going to be that many when he got it. I can't imagine what is left for next week. Poor little guy -- imagine if he'd gotten all of them at once!

In addition to his check up, Oliver also saw the orthopedist and the urologist this week. On Wednesday he had a VCUG, which is a series of x-rays done on his bladder to make sure that it is working properly. Which it is! So we don't have to have another check for 4 months.

He also went for his weekly casting, but this time, some discoloration developed on his foot between the time we got there and the time the doctor went to put the cast on his foot. I was afraid it was an allergic reaction to the elastic in his sock. I'm not sure if I've ever mentioned that babies with spina bifida are prone to latex allergies. These allergies can be pretty severe. It was originally thought that the latex allergy developed due to repeated exposure to latex in medical settings. However, there is some thought that says spina bifida babies might be genetically prone to it. Since all medical facilities dealing with babies with spina bifida are latex free, it isn't such an issue anymore. But in case you've never though about it -- latex is in everything! Including the elastic in clothing. So I was afraid he had a reaction to his sock. The doctor didn't think so, but also didn't want to recast his leg. So Oliver's legs are uncovered for the first time since he was 1 week old. We go back next Wednesday for a recast (as long as the discoloration is gone) -- but it's nice to see his legs.

Other than that, we've been busy with playdates and pumpkin picking. Not to mention that Tim had to travel this week and I've gone back to work. We seriously need about 2 or 3 more hours in every day. It took me three days just to get the time to go out and buy dish detergent and diapers and I still have a huge late fee pending at the library (which is eating away at me). I've never been much of a planner -- I always thought that it led to too much stress. But I'm seriously reconsidering my stand on that. Right now, not planning is leading to serious stress. Maybe it's not planning I need, but organization. As dumb as it sounds, I now want to be the person who has everything laid out the night before. Anyone who knows me even a little bit would probably acknowledge that is so not like me and would probably be next to impossible to achieve. But seriously, something has to give, and I don't want it to be my sanity.

Spina Bifida Clinic Day 1

Here, Oliver demonstrates a wide range of emotions, from happy to sad. What a talented little guy!

So we had our first day of spina bifida clinic last week. What a loooong day! Spina bifida clinic is a department at CHOP designed to allow us to see several doctors in one visit. We get to see a pediatrician, general nurse who specializes in spina bifida, a physical therapist, and a social worker. We also try to schedule other appointments that day, so we also will often have appointments with orthopedics and neurosurgery. Last Wednesday it started out with ortho, which is always an adventure. I waited there so long that they told me to just go to my clinic appointment and come back later. So I went and checked in with clinic and sat there for about 40 minutes. Finally they called me in, took Oliver's height and weight, and put me in an exam room to wait. Hmmm. About 20 minutes later the pediatrician came in. She gave him a quick look and announced him in good health. Something I always like to hear. Then she left, promising that another doctor would be in soon. I just waited.

I was just about to call neurosurgery to tell them I would be late, when one of the SB nurses stopped in and told me to just go up there and come back and finish clinic later. Okay -- so now I left ortho to go to clinic and left clinic to go to neurosurgery. All this and I had only seen one doctor so far. So I went up to neurosurgery, and you can guess what happened there -- I waited.

The waiting room at neuro was a little different. It was packed and loud. I think that the nature of the injuries/conditions that brings many people to neurosurgery are a bit more obvious than other places in the hospital -- a fact that lent itself to a more frantic and agitated vibe. I was feeling sorry for myself because it was 1:30, I was starving, alone (Tim had to work) and tired of waiting, when I saw a woman with three kids struggling at the check-out counter. She had a twin in a stroller, a twin in a sling on her chest, and then a 3 or 4 year old whose condition seemed to affect his balance, so that we couldn't really walk without some help. I looked at my quiet, sleeping, single baby and realized that my day wasn't really that bad.

I was most excited about the neurosurgery appointment because that is the part of Oliver's condition that I am most concerned about. I lose the most sleep wondering whether or not his soft spot is still soft (if it becomes firm or swollen that is a sign of hydrocephalus and he needs to go to the ER right away). If he needs a shunt and we don't catch it in time, that can lead to developmental delays and cognitive issues. So I was definitely anxious for a professional to weigh in on how he is doing. We met with the nurse practitioner, and she said that Oliver looks really good right now. She said that he will probably still need a shunt, but that she is basing that on statistics, not necessarily Oliver himself. If he gets a shunt, it will not make him any more or less predisposed to any cognitive disabilities -- however, it is nice not to have to have the surgery to insert it or any of the possible complications (infections, malfunction) that go along with it. So for now, he is in the clear.

After neuro, I went back down to clinic. Finally, he got to see some doctors. First we saw the physical therapist. She confirmed that Oliver has feeling in the same places that he has motion. Which means that he has feeling on the front of his legs down to his knees, but not below and nowhere on the back of his legs. She also told me that he will develop like any other baby, learning to roll over and somehow pull to a stand. Once he does that, they will fit him for braces and work with him to learn to walk. He will probably need bracing up to his hips and a walker in order to do so. She said that it is the philosophy of the clinic at CHOP that all kids should get to a standing position and learn the skill of walking, even though it is likely that a wheelchair will be much easier for day to day mobility. But at least this way that have the skill if they want to employ it. Personally, I think whatever gives them the most autonomy is the way to go -- it seems to me that a wheelchair will be a much better choice. But I'm all for giving him choices for later in life.

The rest of the visits were pretty uneventful. Didn't learn much from the nurse or the social worker. But I did get a list of items that contain latex. While I knew that all SB babies are prone to develop latex allergies, I had no idea how many items latex can be found in. As usual, a little information with me is a dangerous thing. So now I'm freaking out -- latex is in diapers, adhesive bandages, matresses, toys, and clothing. How the heck am I supposed to know what is safe and what isn't. There are also referred food allergies that go along with it, including bananas, avocado, and tomato. I always felt bad for parents of kids with food allergies; now I know how they feel.

Whew. So this post is almost as long as my day at clinic. Altogether I was there for 8 hours. But at the end of the day, I couldn't even be aggravated. Everyone there is so nice and helpful. I felt so lucky and blessed to get a clean bill of health for the little man. He was no worse for the wear -- he slept most of the day. And I came home to find out that Mac did not cry when her grandma dropped her off at school. Hooray -- she is finally adjusting. Now I can stop crying after I drop her off, too :)

Speaking of Mac -- she has re-caught the cold that she gave to Oliver in the first place. I think that I just have to burn all of the bed clothes and start over. We are a house of germs. Yuck. Even I'm getting sick.

Other miscellaneous updates:

Sniper is still bad.

Mac is still cute, but increasingly loud.

I'm still breastfeeding -- 7 weeks now. Yay.

The Jets still suck.

I had my first real beer in almost a year -- Beer is still good. Really good.