I received an email from Becky Hufty about Congenital Diaphragmatic Hernia Awareness Day, which was today. She also sent the ribbon. I have seen the ribbon before. When I initially googled diaphragmatic hernia, it seemed that the information I found wasn't what I was looking for. I also couldn't absorb too much in the beginning and didn't look too hard or want to filter through all of the links and websites. Last month, for some reason, I decided to google "congenital diaphragmatic hernia" and everything I found was naturally much more pertinent for us. I also found a site all about awareness and the ribbon was there. It is basically a support site for families of CDH babies. I keep intending to go back and look around some more, and possibly join. I just haven't quite gotten around to it. I'm not sure why I haven't made this a priority. We have so much support, but it isn't like you can't have enough. We have met a handful of other families and the Fleig family is an unwavering source of "been there, done that" support. I want to make contact with other families in a more global sense - so why haven't I? I guess we are still just so in it right now...maybe that's enough for today. I don't know.
Ok, so I haven't taken the time to blog about our appointment at Riley on Thursday. It has been a busy week and weekend. The boys enjoyed their spring break, but by the end of an entire week of bopping here and there, messed up routines - they were tired and so were we. Today it was back to school and back to routine. We are now also really into project bathroom - Josh and his Dad did the major demo yesterday. Our bathroom is currently stud walls and wood slatted floor. The boys enjoy peaking through the slats in the floor to the basement. On the up side, they are burning a lot of energy taking turns running up and down the stairs to yell at each other through the bathroom floor/basement ceiling. Anyway, these are the reasons for the delay. Here is the summary: We expected some concern and worry over his weight, but there was none. They seemed perfectly satisfied with his growth thus far and marveled over all of his accomplishments and were pleased with the therapy Gabe is receiving and how it is helping him. So we felt pretty good about this and were not really concerned about the swallow study, to be completed a little later that day. Dr. Stanley - the dev. pediatrician - would meet us there. During our downtime, we shared a wrap at the patio and let Gabe suck on the pickle. He thoroughly enjoyed it, especially since he was very hungry - awaiting the start of the swallow study. By the time the study started, poor Gabe had missed a nap so we could now add tired to the hunger. If you know anything at all about babies, then you know this is not a good combination for the most good natured of little ones. He was unhappy, but handling it all ok until he saw the cup and the shaking of the formula. The pacifier popped out of his mouth and he started making the little urgent noises he likes to make when he is very hungry and he wants you to hurry up. Unfortunately, there were delays in experimentation with different cups and consistencies. He would be given the cup, then it would be taken away to try something else, then he'd get it back, then it would be taken away again. Not good. Not good at all. On top of the fatigue and empty belly, he was sitting straight up and strapped into a seat with all of the equipment needed to watch him swallow the barium (so he also had chalk in his milk). It was a wonder they got any information at all. Here is what we discussed after: She stated that she did not see any specific aspiration, but she was very concerned about Gabe having his head back (hyperextended) while drinking from the sipper cup - it looked risky for aspiration and she didn't feel comfortable giving us 100% assurance that he was not aspirating or would not aspirate with the cup. They also tried a straw cup, which she thought looked better. They also tried the cup and thickened milk. We could tell she was a bit uncomfortable with Gabe drinking from the cup, or probably even the straw cup, but didn't want to tell us we should go back to using the tube more exclusively when we haven't used it in over a month - and very little for over two months. Her suggestions were to thicken milk in the sipper cup and really push towards getting him to use the straw cup. When we had a chance to process all of this, here were our thoughts - at home when he drinks from the cup he is held in a more reclined position and his chin is down, meaning his head and neck are not hyperextended. He is also not usually between screaming fits. I guess we just didn't have a lot of confidance in the reliability of the test in showing what is happening in our daily life. Dr. Stanley also mentioned that one reason Gabe may not be taking 8 ounces at one time like a more normal 10 month old could be that he feels unsafe and gets fatigued. We won't argue that he may be getting fatigued - we know he still breathes faster than what is normal for other babies and the whole "suck, swallow, breathe" coordination is different for him. I could see that for the little I was able to observe. It looked to me that he would "suck, suck, then swallow, then breathe". It seems that he is finding a way to make it all work - and over the past 8 days (according to our log) he has increased how much he takes at one feeding and how much he takes overall. He typically takes 20+ ounces per day now.
We also discussed ways to keep his calories up - and she agreed with everything our OT was having us try thus far. She even mentioned that we could mix in some butter to up his calories. I didn't expect to hear that. We'll have to see if Paula Dean has a cookbook for babyfood. That ought to take care of all of our calorie concerns. Dr. Stanley agreed with Dr. Rouse that we should probably get weight checks every two weeks to continue monitoring Gabe's weight/growth. She also wanted to up his fluid intake a little more and suggested that if he gets less than 28 ounces of fluid per day (we can count some fruits and veggies to a degree) we should maybe put some water down the feeding tube to keep him hydrated - without worrying about filling him up and interfering with his hunger and desire to eat. Then she mentioned something we did not expect to hear. She said if everything was going well n July when we return to see her - meaning he is eating and drinking like a normal 14 month old, we could discuss when the tube should come out. I really thought it wouldn't even be discussed until after the next cold and flu season, which could still be our reality. We will just have to see how the next few months progress - see what Gabe does! She also mentioned that if Gabe didn't seem to be eating a variety of foods and calories were still a concern, we should probably delay switching to milk after his birthday and sticking with formula a little longer. I kind of expected that. I think that is it. I hope I got it all. It is late and I haven't proofread this, so forgive the typos please!
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