Lately, I think about things like:
- Riding in the car. Most omphalocele babies come home from the hospital long before their abdomen has been completely closed, particularly with muscles. And even then, their organs will always be in funny places, so things that are usually protected by the ribs are not, and so on. So far, I have seen two methods: a car bed, which is pretty much what it sounds like... Baby lays down on his back and is strapped in to this bed-looking thing that is secured to the car. The other one is what I have affectionately named the "O" helmet. A custom fit hard plastic brace that goes over the omphalocele to shield it from impact that is always worn in the car seat... Don't ask me how you strap THAT in! :) I can see the comedy in the hospital parking lot going home already.
- What to buy/register for. Tate is likely to be a bit on the small side because of possible absorption issues with his intestines, and because the average gestation for an omphalocele baby is only 33 weeks. On the other hand, some "o" babies make it to term and are average-sized little ones, all except for the mass on their belly. In addition, we have no way of knowing how fast he will grow, so buying clothes in season ahead of time is near impossible. Oh, and then there is the whole snaps vs. zippers thing. As long as he is in the NICU, he will pretty much only be allowed to wear socks and hats, until the surgery is complete and he is healed nicely. Then, once his belly has healed, he can wear clothes but they have to be fastened with snaps instead of zippers to allow room for the cords to go where they need to go. Tate's shower is coming up on March 24, & we've decided to have a cutest sock contest in his honor so he can rock the NICU in style. :)
- Whether or not Tate will be able to play sports. Sports are a big part of our family... Tate's big brother plays baseball and football. And of course, my husband is looking forward to being able to be an active part of that area of his life as he grows up. So far, everything is looking good for him, and from what I have talked about with other omphalocele parents, their kiddos have been more than capable of playing sports. Most have restrictions to stay away from any contact sports (read: football), or are required to wear a special apparatus made by a occupational therapist that will protect them above and beyond what normal protective gear does. The biggest reason for this is because often the organs in "O" people are jumbled up inside their abdomen, and remain that way for life. Most of the time, that doesn't cause too many issues, but in the case of contact sports, if, for example, his liver were to be below the ribcage and therefore not protected, he could easily lacerate it from getting hit. Needless to say, that could be catastrophic. Like I said, so far, it looks like all of his organs are relatively close to the normal arrangement inside his abdomen, but we are really hoping he can be a part of athletics with the rest of the family. And certainly we will love him just the same if he can't. :)
- What his bellybutton will look like. Essentially, he doesn't have one until he gets cosmetic surgery, which will most likely just be tacked on to whatever surgical procedure we do to put his organs back inside and seal everything up. I have seen many pictures of different bellybuttons that surgeons give omphalocele patients. Some are really good, some are really bad, and some just don't have a bellybutton period after the multiple surgeries. Omphalocele kiddos are also very prone to hernias, so it makes me wonder how he will fare after all that he will go through. Of course, he is my baby and I will always think he is perfect the way he is, but I dread the day that he gets made fun of by other kids who don't understand why he looks different. I pray that our family can raise him up to be a godly, strong young man who is not ashamed of all that the Lord has brought him through and wear whatever scars or funny bellybutton he may have with pride.
Also, since I haven't written in a while, I have an update from our last ultrasound on February 11th. Tate looks great! He is snugly nestled very low in my pelvis and facing my spine...the perfect position for delivery, so that is a plus. However, it makes it very difficult to get a clear shot of anything on the front of his body....you know, the little things like his face or his omphalocele. ;) What we were able to see is that it continues to be very small and minor, and he is proud of his little man parts that he flashes with pride every chance he gets :) His bowel is still glowing quite a bit, but there were no changes that alarmed Dr. Zink. She postponed referring us to pediatric surgery until 30 weeks, but I think I may press her to move that up, because I want to have time to interview more than one doctor in the event that I don't like the first one we are given. In the grand scheme of things, Tate couldn't look better as an omphalocele baby, and what we thought was going to be several months in the hospital could now turn into just a couple of weeks if things continue in the positive manner that they have been. Praise God for that! We will continue to pray that his echogenic bowel issue will not be a serious matter that requires surgery or has lasting effects on him, and she will see us again for another ultrasound on March 11th! Other than all that, all of his organs and muscles look great and he is growing right on track. He weighed in at exactly one pound last Monday...can't believe it! We will also see our OBGYN Dr. Downey in a week from now, but I don't expect that appointment to be very eventful.
As of last week, I finally actually look like I am pregnant and not just holding on to extra weight from eating too much during the holiday season. :) I love being pregnant and looking pregnant! I am 23 weeks along today, and this little guy is kicking around in my belly almost constantly. I love trying to gauge how much stronger he is getting by seeing how much he can make my stomach move around visibly from the outside. So far, I have been feeling good and have had minimal hip pain, which I had pretty bad with Tate's sister at this point in the pregnancy. I am hoping that I will avoid the pelvic pain that I had as she got bigger last time, but I am sure that is just wishful thinking...I'm already getting tired quicker and having a slightly sore back occasionally :) It makes me happy to know he is growing though, so no complaints here! I am one blessed mom to some amazing kids, and I cannot wait to finally meet this incredible little miracle. I feel so lucky that God picked me to be his mama already, and I love dreaming of all the joy he is going to bring to our family.
