First off, Taylor is completely fine (and that is not me being in denial). He’s progressing against his developmental milestones very nicely and is a wonderful, happy little guy. I wanted to point that out up front so nobody gets freaked out.

At around his four month checkup, our doctor noticed that Taylor’s head was slightly deformed, in that he had a flat spot on his left rear side and his right rear side had become pronounced. He also noticed that his face had developed some slight asymmetric characteristics, in that his left eye was slightly larger than the right. He immediately recommended that we get X-Rays of Taylor’s head to rule out a serious condition known as craniosynotosis, where the gaps in a baby’s skull close prematurely. He was fairly certain this was not the case, but wanted to rule it our for sure.

Thankfully, the X-Rays proved our doctor’s position correct; Taylor’s skull was fine. This meant that Taylor was diagnosed with a condition known as positional plagiocephaly. Basically, it is a deformity of the skull caused by a baby’s tendency to remain in a particular position, thus putting pressure on a certain part of the skull more than others. Because an infant’s skull is soft and malleable for many months after birth, this pressure causes the skull to be rounded in an unusual way.

We had previously noticed that T tended to sleep with his head turned sharply to his left, with his chin titled upward. But we didn’t make anything of it; it was just one more lovable quirk about our little guy. It turns out that this was due to a second condition called torticollis, which is a stiffening of the muscle and tendon tissue connecting the neck to the shoulder, causing T’s head to be pulled off center. Most likely he was either born with this or it was exacerbated by his vacuum delivery; regardless the doctor explained it as being somewhat like a semi-permanent charlie horse. This caused his tendency to remain in one position, which in turn caused the deformity of his skull.

So fast forward five months later. Taylor has been being seen by a physical therapist once per week and has made tremendous progress. He can now turn his head both ways with ease and is displaying neck strength pretty much on par with where he should be (just look at the most recent pictures on this site). We’ve also been strict about changing the position he sleeps in, from both sides to his back, and even sometimes his belly (mostly at his own choice). But despite all this, his skull has not completely returned to a normal shape. Even though I would bet that most people looking at him would never notice, his left-rear side is still somewhat flattened, with an equally subtle pronouncing of his right side.

So because of this, his PT has recommended we pursue the fitting of a cranial orthotic, or basically a fancy molded helmet that will gently help realign his skull in place. Treatment will last between 3-6 months, with T wearing the helmet for up to 23 hours per day. Insurance some times does not cover this treatment, which would mean we would have the awful choice of either putting a significant dent in our emergency fund (the helmet costs about $3,000) or possibly leaving our little guy with a problem that, while it may turn out to be nothing more than cosmetic, could cause issues down the road. Needless to say if that decision comes to us, we’re choosing for Taylor’s best interest.

So why, you ask, am I writing about this? Because I hope that our experience will help other new parents to remember that while your little one may always seem perfect in your eyes, it’s also important to keep an objective (as possible) eye on their behavior and appearance. It turns out that since the advent of the “Back To Sleep” campaign, which without a doubt has had tremendous positive impact on the rate of SIDS, this condition has increased significantly. If we had noticed Taylor’s knack for sleeping and holding himself in one way earlier, the condition could well have been prevented or at least resolved without the need for expensive medical gadgets.

And by the way, helmet or no helmet, we still think our little guy is pretty damn special.

Some good resources on positional plagiocephaly:

http://www.cappskids.org/

http://kidshealth.org/parent/general/sleep/positional_plagiocephaly.html

http://www.nichd.nih.gov/health/topics/positional_plagiocephaly.cfm

The ER Dr got the drugs flowing and I don’t remember the night really clearly but I can give you and idea. As soon as they got me calmed down they wheeled me off to get a CAT scan to see if they could find the source of the pain. Luckily my MIL had called my father-in-law (FIL) and told him to get to the hospital ASAP to be with Josh even though Josh said not to send him. My time sense is all warped but in the middle of the night the ER Dr. told me he didn’t believe my CAT scan because a woman of almost 30 shouldn’t have this condition but that he had called the surgeon and that he was on his way in. At that point it hadn’t set in for me what was going on. Not until the surgeon came in and told me that they were starting to push IV antibiotics and that I would be going in for emergency surgery in less than an hour…. SCARY!!!!! It finally hit for both me and Josh. This was really, really serious. I was glad my FIL was going to be there with Josh while I was in surgery.

It turned out that my colon was dead and gangrene had set it. They had to operate immediately to prevent me from getting much, much sicker. I came out of the OR and post-op around 9am (less than 12 hours after being admitted) and they set me up for a stay in the ICU. Josh had called to tell my parents right before I went into surgery and I was surprised and grateful to see them standing there with him when I came out of the recovery room. So nice to be alive and surrounded by love!

I spent 1.5 days in the ICU before getting sent to a regular room on the 5th floor. I was released from the hospital yesterday with a 12″ vertical incision, stapled closed, on my belly and one foot less of my large intestine.

I’m getting better each day but the hardest part of all of this ordeal was being away from my family…especially Taylor. I’m sure every mother can attest to the ache in your heart when you are separated from your child. This unplanned separation was the worst kind because I didn’t know if they were going to let him see me in the hospital. The days were OK because I had friends and family who came to visit to pass the time (Thank you for everyone who came to visit!) but the nights….let’s just say the were bad, really bad. I just had to focus on getting healthy so I could get home to Taylor. Taylor did come visit me for two short periods while I was in the hospital but I was unable to hold him for long because of the incision and the pain it caused, which was difficult but much better than not seeing him at all. I am thankful to the nursing staff on the 5th floor of Phoenixville Hospital for making that happen!

I was exclusively breastfeeding Taylor before the incident and I started pumping in the hospital post-op to keep my milk supply up so that we can eventually return to breastfeeding. (NOTE: Hospital pumps are awesome!) I will be on antibiotics for another 11 days and will have to continue pumping and dumping until I am done with them. In the end I will not have breastfed Taylor in more than two weeks but am going to push trough any of the challenges we may face in continuing our breastfeeding journey.

I was concerned that Taylor would grow to like formula too much and not want to go back to breastfeeding so I reached out for help through a breast-feeding support group that I belong to, through The Birth Center in Bryn Mawr. My friend Candace, who also belongs to the group, set a request to all of the members to see if anyone had frozen breast milk that they were not using or would be willing to supply any freshly pumped. There are angels out there because one of the members and a large supply of frozen milk that Candace picked up and had delivered to the house so that Taylore could continue getting the benefits of breast milk even though I could not supply them it. I was overjoyed and could now focus my efforts on healing and getting back to being Mommy again.

Thank you for all of the shared stories, prayers, visits, and more that have come from so many directions. We are so lucky to have such a supportive network of friends, family, and aquentences. We love you all so much!

I slept all the way to the doctor’s office and only started to cry when Mommy had to undress me to weigh me.  I gained 8oz since my last visit so I weighed in at just over 8.5 lbs. That means I gained just over one ounce a day over the past week. I guess my Mommy is feeding me well.

I’m not a big fan of going to the doctor. But today was one of my least favorite visits because I had to get a shot! I did not like it at all. It really hurt and now my leg is sore. But Mommy gave me some great grape-flavored Tylonal which made me feel better. It tasted really good too. But Mommy’s milk still tastes better.

Today Granna also came to visit so I got to spend some quality time with her. That was much better than going to the doctor.

And I ended the day hanging out with Daddy…or sleeping with Daddy. It’s been a long day!

Taylor