I am a little behind on updating from appointments, so let's catch up...last Thursday the non-stress test was fine, he passed with no issue which was great! Then I went straight up to soccer camp for the weekend in Ada. I came back and had an ultrasound on Monday. The ventricles were 27 and 23 cm, which puts us squarely in the hydrocephalus territory, but it is good news that there wasn't a huge increase from the last time. Today, Tuesday, was the meeting with the pediatric neurosurgeon, Dr. Vogel. I liked him. My dad has on many occasions mentioned to trust my Sys1 (initial instinct) and in this case it is telling me to like Dr. Vogel, so we will go with it. We learned a lot from him, but there was also a lot of 'wait and see'. Here is what we know to expect now. We will be having a C-section on July 18, not sure what time yet. Dr. Vogel said that it is better that way as it would be gentler on the baby so that is what we will do. After birth, the team in the room (yes he said team, so I am not sure how many people get to see my insides and be present in the room, but should be interesting) will evaluate the baby and see what we are dealing with. If there is no emergency situation with him and they can sterilize the opening and cover it without a problem, he can hang with us for a few moments, but we will not be able to hold him. He will be transferred from University Hospital to Children's (about a block away) where he will go into the NICU. They will do all the imaging and testing on him at this time (MRI, Urology, Heart rate, lung capacity, ultrasound, etc.) to get a baseline for his numbers. Then within 48 hours of birth they will do his closure surgery. To do this, they pull all the layers of his skin and muscle over the opening and close it up. Depending on how big the opening is, they may call in plastic surgeons to help with the closure and the scarring. After the surgery, it is back to the NICU where we try to keep the wound clean and free of any 'debris' that may come up the back of his diaper. He will only be allowed to lay on his stomach at first and then he will transition to his side as they think the wound can handle more pressure. Normally it is about 3-4 days before we can hold him, even once we are able to hold him, he will have to be on a pillow on his stomach and the pillow can be on our laps, so we don't put any pressure on the wound. That doesn't sound like holding to me, but I am sure when the time comes it will be great to even be able to do that. Over the first 7-10 days after the closure surgery, he will be monitored very closely in the NICU for his ventricles and head size numbers. Based on his enlarged ventricles at this time, Dr. Vogel said we are to expect a shunt. He prefers to do a non-programmable, medium flow shunt at this time since they have less instance of malfunction. Normally the shunt surgery will take place around 10 days, if not before, and then we will not be able to 'hold' him again for a few days while that heals. He said that the healing from that may only be a day or two. The shunt will be able to be seen through the skin as a tube running just under the skull and the sutures are the kind that get absorbed. Once his hair grows in and his skull thickens as he gets older it will be less visible, but for the most part you will be able to see his shunt. The shunt is the main part of Spina Bifida that we will deal with early on. On average, people need shunt replacements 6-7 times, each time this happens it is a surgery. This was hard to hear "your child will need serious surgery near their brain multiple times in their life, possibly multiple times in their first few months of life". Just what every parent hopes for their newborn! A shunt malfunction can present in many different ways and Dr. Vogel said we will become familiar with how it will present in our little guy as we gain experience (also something that is not great to hear "you will become very good at knowing when the pressure in your child's head is too much for him to handle b/c he will act strangely and be in pain due to the collecting of fluid on his brain"). Sometimes a symptom can be something easy to notice like sunsetting eyes or a bulging fontanelle, but sometimes it can be more subtle like fussiness or vomiting (also known as normal newborn behavior). I have a feeling I will know the number to the Spina Bifida clinic by heart in a about a week or two. While in the NICU, we will learn how to catheterize him to help him empty his bladder completely. This is something that sounds a little overwhelming when I stop and think about it. We will literally have to stick a catheter up his penis to empty his bladder multiple times a day (I know that is a lot of information and a tad graphic, but I can only imagine that this is the tip of the iceberg with how graphic things will get, so please be prepared for this type of talk). This will help him not get UTI's and keep him from getting kidney damage. There are procedures now that you can do once the kids are older that sometimes help with their continence, but for the most part, when they are little, they have no control over their bladder and bowel movements so you have to really stay on top of diaper changes and catheterization. Babies with Spina Bifida get diaper rash very easily because they can be constantly pooping and peeing so they always have it against their skin. All in all, we are expecting a NICU stay of around 14-18 days, then hopefully we get to come home and be a complete family.
And that is where we are. We are on a countdown to baby Thomas. This is such a surreal feeling to have a countdown to baby after our other two middle of the night dudes. Part of me is sad that I won't get to feel the contractions and do the labor, but I completely understand that this isn't about me and this is what is best for Thomas (we have decided to name him Thomas, by the way). After hearing the details about everything that Thomas will go through in just his first few days of life, the least I can do is allow him an easy and traumatic-free way of entering this world.
Next appointment is Thursday for a non-stress test. We get to meet Thomas in 17 days!!!
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