Special Care Clinic - 2nd Follow Up

Sofie had her 2nd follow-up appointment with Dr. R. at the CMH Special Care Clinic today. Settle in folks, this is a long one. Unfortunately Mommy wasn't able to make it with her broken foot, so Daddy was solo with Sofie. They got to visit with Dr. H. and Corey and Kinley's Mom & Dad while they were there too!

Overall Daddy said the appointment went pretty well. They said Sofie is on track developmentally - great news! The OT showed him some new things to try with tummy time, since she's still not the biggest fan of it and he said she really loved it, so I'm very excited to learn this new tummy time technique tonight. This afternoon when she was doing her tummy time with Mommy and Grandma Linda she did prop herself up on her forearms and raise her head quite a bit better than she has before, so she's getting better at it. I hope introducing these other new things that were suggested today will help even more. I've been trading calls with First Steps for 2 1/2 weeks now. They seem to call when we are away from home at Dr's appointments, so I call back and leave messages and they call back when we're gone and so on. So we have yet to make any real contact with them.

Her oxygen saturation was 100% (perfect!) when they checked her today. Yay Sofie, I'm so proud of you! To do this, they just put on a sat probe when they're taking vitals and weight, etc. She has her oxygen on at the same rate it always is. They haven't ever said anything about when they expect her to be able to trial off oxygen again. When we go back for her next appointment, I'll ask them what criteria they're looking for before they would consider a trial off oxygen. I would assume it would be things like several good sats (over 94%) at appointments, consistent weight gain, not working harder to breathe during feedings/activities, etc., no tachypnea (breathing fast), and things along those lines. However, she's really been meeting all those criteria since we brought her home, so maybe they just want to give her a good month or so before trying again. I'm in no hurry to get her off oxygen. While it will be nice for her not to have it, I'm sure it helps her continue to gain weight because she doesn't have to work at breathing.

I thought they were planning to draw her blood today to check her liver function again and do another CBC to be sure her hemoglobin and hematocrit still look good. I assume they will want a good CBC prior to trialing off oxygen to make sure her blood count is sufficient to carry enough oxygen in her blood. (Red blood cells carry oxygen.) We want her set up to succeed! Kenny said they mentioned waiting a while longer to draw her blood, so maybe next week? I'm anxious for her to get off the Actigall (for her liver) if she doesn't need it anymore.

They observed a feeding again with OT present and said she's taking her bottle fabulously (which we already knew). The only real concern they have is with her growth right now. I was a little surprised by this and also a little upset because I felt like she was doing really well with growth all things considered. The majority of CDH babies that I have read about, do not even fall ON the growth chart at all. At this point, her pediatrician is also fairly pleased with her progress. So I feel like we are in two different schools of thought at this point and I'm a little frustrated with it.

First and foremost, I want to her to be healthy and grow appropriately. Mainly because I want her brain to grow as it should. She's currently between the 3rd and 5th percentile on the growth chart for weight and head circumference. She's between 25th-50th percentile on the growth chart for length. So basically, she's long and lean, tall and skinny - however you want to say it. While I'd be pleased if her weight and head circumference where a little better, I'm comfortable with where she is as long as she continues along the same curve. The pediatrician completely agrees with this. As long as she continues to gain and stays along the 3rd-5th% curve, it's fine. So far, since we've been home she has ALWAYS gained weight at all her Dr.'s appointments. She's never lost and never even stayed the same. She is consistently gaining. If she starts consistently falling behind, I feel like that's when we need to intervene further.

That said, any of you who knew me as a child, know I was EXTREMELY thin. I was a perfectly healthy girl, ate like a horse, was just like any other healthy kid and was still very thin. They didn't do growth charts back then, but I'm positive I was not even on any growth curve. So how much do genetics come into play here? I'm confident that if I had given birth to a perfectly healthy child, he or she would still be long and lean/tall and skinny because I am, my mom is, etc. It's genetic. Even though, in my more recent years I've had no problem maintaining a normal weight ;-) College life and getting older does that to ya!

Sofie has another appointment at the Special Care Clinic next Monday for a weight check (and hopefully a blood draw to discuss discontinuing the Actigall). Kenny said the words "NG tube" did come up today depending on how her weight gain is next week. At this point I'm completely opposed to putting an NG back in. I'll explain more on that later.

They also recommended that we start waking her up again for that middle of the night feeding to get more calories in and hopefully get her to gain more weight. We originally cut out the 3 am feeding because she wasn't awake enough to eat and she was wanting to sleep about 6 hours straight at night, which was appropriate for her age. When we cut out the 3am feed, we increased her total volume during the day to make up the difference. So now she gets up around 4:30 am for a feeding, then feeds every 2 1/2 - 3 hours during the day until her night time feeding at 11pm. This way she gets 7-8 feedings per day, still gets to sleep at least 5 hours at night, and it's been working really well for us.

A little sidebar on sleep: She's getting to the age now where it's going to become important to develop a bedtime routine. She's also wanting to naturally fall asleep at night around 10pm, so we're having to work really hard to keep her awake for that last 11pm feeding, and then we really have to work with her to get her to finish her bottle. Until today's appointment, I was considering trying to put her to bed a little earlier between 9pm and 10pm. We'd wake her up around 11pm to feed her, and then feed her again when she wakes at 4:30am just like we've been doing. I think this would allow for a more natural sleep schedule for her. And hopefully develop good sleeping habits in the future. A normal 3 month old will need around 13-15 total hours of sleep per day with 6-8 hours of this being a long stretch at night. Of course this varies a little with each individual baby and their particular needs, but the reason for this amount of sleep is that it allows for some important brain growth and development. So sleep is an important part of her daily routine, and since she's never been a big time sleeper during the day, I feel this night time sleep is beneficial to her.

Now the nurse in me knows how to prioritize and the importance of calories and growth does outweigh the importance of sleep, so if waking her up every 3 hours to feed is the only way to keep her from getting a tube, I'll do it. And I know by this talk of NG's being brought up that it's a step along the path to bigger and better things. A.K.A. The G-Tube. And believe it or not, when it comes to long term tube feedings, I do agree that a g-tube is better than an NG for several reasons even though it involves a surgery. But when I sit back and think of how all this comes into play and think about the big picture, introducing a tube (of any kind) doesn't really make much sense to me. And here's why.

The only reason that Sofie would need a feeding tube is if she weren't able to physically eat enough to grow appropriately. Her small size may look like she's not eating enough, but in reality she's eating extremely well. She's also stooling appropriately and having enough wet diapers, so all the plumbing is working well. Meaning it's not an issue of eating a lot but not absorbing the nutrients internally. Dr. R. told us at our first appointment that a good rule of thumb for feeding volumes at her age is that she should be eating about as many ounces at each feeding as she weighs in kilograms. She currently weighs 4.6 kilograms and eats 5 oz. at each feeding. So, she's an overachiever, right? Well, sort of. Where we run into problems is that darn thickener. Remember, in order for her to get 4 oz. of fortified milk, she has to actually eat almost 7 oz. of thickened milk. I never did get to discuss this issue completely with Dr. R. When I did ask to thicken with something else containing calories, she said there was no other option. So, what then? Are we out of luck? Right now, she's consistently taking 5 oz. of thickened milk at each feeding. So I'm figuring she gets just under 3 oz. of actual calories in each 5 oz. bottle. The rest is just fluff, literally. It takes up space in her tummy and has zero nutritional value.

Now bear with me here, while I crunch some numbers. When we left the hospital, her feeding plan had her getting 150 calories/kilogram/day. Since she's only getting about 3 oz. of calories in her 5 oz. feedings (26 calories per ounce fortified), and getting 7 feedings per day now, she's at about 118 calories/kilo/day. Adding one more feeding each day would get her to 135 cal/kilo/day. If she didn't have the thickener taking up all that space and was actually getting 5 oz. of calories in each bottle, she be at 197 cal/kilo/day just on 7 feedings! See the huge difference that thickener makes? So it looks like she's eating a lot and still not gaining, but in reality it's that thickener dragging her down. If she didn't have to deal with the thickener, she'd almost be getting too many calories. So it's not that she can't tolerate an appropriate volume. In fact, she's taking a large volume for her size. It's that a lot of the volume she's taking is a waste of space. If only we could thicken with something else that had calories in it, all our problems would be solved. So I'm going to bring this up again with Dr. R. and also with our pediatrician and hopefully the two of them will also talk, so we can all come to a reasonable agreement.

If after discussing all this, we are still stuffing her like a Thanksgiving Turkey with thickened milk, and she's consistently falling behind and not gaining, only then will I agree to any kind of feeding tube. I think the less intervention the better, because adding more things sometimes brings on more problems. I want to do what's best for her, but at the same time if she's doing fine without a feeding tube I can't justify letting them put one in her just because she's on the small side, which isn't unexpected given her genetic predisposition, and starting out life the tough way.

Sofie's Mommy