Friday 12.19.08 - 9 Month Check Up

Weight 6.96 (15 lbs, 5.6 oz)
Oral Intake 17 oz

Can we still call this the Pedialyte Trial, since Sofie hasn't actually had any Pedialyte for the last 2 nights? We're going to continue weaning the NG and adjust our plan on a day to day basis to keep making progress.

Last night we gave her 8 ounces of milk at 65cc/hr, so it ran in over about 3 1/2 hours. She only took 11.5 oz by mouth yesterday, because she was still a little constipated. We wanted to give her a little boost of calories and fluid, so she could get back on track. Friday she did quite a bit better. She took 17 ounces! Now hopefully we're back on track.

Sofie had an appointment with Dr. Y. Friday for her 9 month check up and her 2nd Synagis (RSV antibody) shot. We hadn't seen him since her 6 month visit, and it's been a very busy 3 months so we had a lot to talk about. I was really anxious to talk about how we'd been weaning her NG and see what his thoughts were. He spent over an hour with us talking about all that's been going on and how Sofie is doing.

The first thing he said when he came in and saw her sitting up on the table playing without her clothes on is how good and healthy she looks. His first thought was that she looks nice and filled out, even a smidge chunky (in a good, healthy way). He's very pleased with her weight and her growth over the past few months, especially since she had another major surgery. This was so good to hear for a change. Even though that's how Kenny and I have always felt, it's still really nice to hear that validation from Sofie's pediatrician, especially after being berated for being such a bad parent at the Special Care Clinic on Wednesday.

I told him about how we've been weaning the NG and gave him all the details and he was really pleased with how it's going and with all the progress she's making. I told him it was a big relief to hear him say that and went on to explain the reaction I got from Dr. R. on Wednesday. He said he was sorry that had happened, but that he felt we were doing the right thing. He thinks that weaning the NG this way by hunger provocation is the only way to get kids like Sofie off of tube feedings and back to oral feeding. He went on to talk about the hunger mechanism, the role of the hypothalamus, and retraining the brain to know and react properly to hunger along with positive associations with food. He completely validated everything I have been thinking and reading about this.

He also reassured me that Sofie is definitely not experiencing chronic malnutrition or any harm by doing this and that this was the best thing we could be doing for her right now. I told him we've always been happy with her weight and her growth, but the only thing that's ever been concerning to me is her head circumference. It's always been less than the 3rd percentile, although it has continued to grow right along the same growth curve, and even climbed a little higher on the growth curve over time. This has concerned me only because her post-ECMO MRI showed "brain shrinkage" according to the results we got from her doctors and also some possible white matter attenuation. Her cognitive development and brain function and growth have always been a primary concern for me.

He said he's not at all concerned about her head circumference, that the size of her head doesn't matter at all. He said what really matters is how she is developing and whether she's age appropriate. His exact words were, "she has my head." And I've never noticed it before, but Dr. Y. does have a small head. He said if he were to plot himself out on a proportionate growth chart, he would probably be below Sofie on the growth curve and that even today he still has to shop for his hats in the youth section. And I think he's a very smart person, so this was really reassuring for me.

Dr. Y. said he's very pleased with her cognitive development on all levels. She's age appropriate for everything except for her social and language skills, in which she is slightly advanced for her age. She's a little social butterfly and is highly interactive with people and with her surroundings. She's busy all the time and waves at everything (even the wall)! She also makes the following sounds: hi, dadada..., bababa..., and the occasional gagaga... She's been "saying" hi and da since she was about 3 months old and the ba and the ga have shown up in the last couple of months. She also likes to yell and see how loud she can be. The yelling started around 6 months of age. She still likes to spit and blow bubbles and raspberries (since July - 4 months), and this month she started swishing spit around in her mouth to make noises and thinks that's pretty funny.

The only things she is a little behind with are physical. Babies usually crawl by 9 months of age, but sometimes it's later. Sofie still isn't crawling, but he said given her medical history and two additional surgeries in the past few months, he's not surprised she isn't crawling yet, but she will and he's not worried about it. He's looking for her to be crawling around 11 months of age and walking around 15 months of age. She did sit unsupported on time, which was around 6 months of age. She would still topple over then if she lost her balance, but by 8 months of age she was really stable sitting up by herself. None of her delays are permanent, they're just related to decreased physical strength, because of all she's been through and she'll catch up quickly.

Right now if I put her in the crawling position with my arm under her chest for support, she bounces on her hands and knees and bears almost all of her weight on her own. When she's on her tummy, she can push up and fully extend her arms. Her arms are still a little weak for the good mobility she would need to crawl. The adducter muscles in her thighs are also still weak, so she tends to "frog out" when she's in the crawling position. Those muscles are still a little too weak to hold her legs together and move them in that position. So those are things we're working on right now. We're also standing her up and working on getting her to lock her knees and hips to stand up and bear weight. She does this fairly well, usually bearing maybe 10-20% of her weight in the standing position before her knees buckle and she starts trying to "dance." She's a goon - she dances to EVERYTHING now!! It's so cute! This week I found that if I put her in shoes with a good solid, wide sole, she stands better and will bear 80-90% of her weight in the standing position. Shoes help, who knew? LOL

Last night she also sat up on her own for the first time. She's been able to pull to sitting with very little assistance while holding onto your hands since around 6 months or so, and she can sit up on her own from about a 45 degree angle or a little higher, but she hasn't rolled onto her side and pushed herself up to sitting on her own yet. When I laid her in bed last night I put her on her back while she was still awake. When I came back to check on her a few minutes later she was sitting up playing in bed. She turned around and looked at me like, "Yes, Mom, is there something I can do for you?" What a squirrel. I'm not sure how she did it, but I'm guessing she grabbed onto the bumper and used that to pull herself up to sitting. Guess it's time to drop her crib down a notch so she doesn't climb out!

I've gotten a little off track, so back to Sofie's appointment with Dr. Y. I told him we felt we had reached a bit of a plateau with the pedialyte trial over the last couple of days because she was getting a bit too dry and starting to get constipated. We thought maybe we needed to give her some NG feeds to give her weight and hydration a boost, so we had given her night feeds by NG the last 2 nights, but were worried she'd backslide on her oral feeding progress by doing this.

First he said we can manage her constipation by changing her meds up a little. He asked if the Special Care Clinic had ever tried her on Miralax. I said no, just the erythromycin and lactulose. I told him I didn't think she had any decreased gastric motility, so I didn't think she needed the erythromycin at all, but that it would be easier to give orally than the lactulose because it's such a small amount if Sofie is able to get rid of the NG soon. He recommended stopping both the erythromycin and the lactulose. He doesn't think she has any problem with gastric motility either, so there's no need for the erythromycin and he thinks miralax will work better and be easier for us to give than the lactulose. Without the erythromycin, she'd probably need at least 4 mls of lactulose twice a day to continue stooling appropriately. The lactulose is super thick and very hard to give by NG. It's pretty much like corn syrup. It has to be diluted to thin it out enough to go through the tube. And 4mls is quite a bit of medication to have to give at one time by mouth if she didn't have the NG. The miralax is a small amount of tasteless powder that we can mix with any of her food or with pedialyte and we only have to give it once a day. Plus it's over the counter, so that would eliminate two of her prescription meds.

While we were on the subject of meds, I told him we also had always doubted her need for the Prilosec, but had only started it on her proactively after her 1st recurrence, since we expected her to develop severe reflux. She never did, but we weren't sure if it was because we had started her on the Prilosec before she had a chance to develop any symptoms. She's also taking Zantac, because Dr. Y. started her on it when we first came home from the NICU and she was really fussy. The Zantac immediately helped with her fussiness and that's also when she really took off with feedings. So we thought she might still need the Zantac, but questioned the need to give both.

However, we're reluctant to make any changes in that department while we're trying to wean the NG and encourage oral feeding in case changing the meds were to cause any problems with reflux. He said he didn't think she needed the Prilosec and certainly not both. Maybe just the Zantac. A lot of healthy babies have problems with reflux, but it gets better after 6 months of age and with the introduction of solid foods. At her age she should be okay with regard to any problems she may have had with reflux. But CDH babies typically have severe reflux and with her history of severe hiatal hernia, we would expect her to have significant reflux. However, she doesn't show any signs of reflux at all. We don't know if this is because she's on meds or because she just doesn't have a problem with reflux. And we won't really know unless we stop the meds to see.

He recommended stopping the Prilosec and just giving the Zantac. This will change her dose of Zantac to twice a day instead of once per day, but would eliminate the two doses of Prilosec she's currently getting, so one less dose per day overall and it also would eliminate another prescription med.

I asked about her multivitamin with iron and if she still needed it. He said he would recommended keeping her on it until she's taking more solids and also recommended increasing the dosage to 1.5 mls per day (it's 1 ml per day now), just based on her weight and because she's older. It tastes HORRIBLE, so we give it by NG now, but when her NG is gone, I wanted to make sure it would be okay to split the doses into several smaller ones throughout the day so we could get it all in easier and he said that would be fine. When she was PO feeding before we would just put a few drops in each bottle throughout the day and that was the only way we could get it in her.

So her old daily med plan looked like this:

9:00 am 3.2 mls Prilosec, 0.4 mls Erythromycin, 3 mls Lactulose

12:00 pm 1 ml Vitamin

3:00 pm 3.2 mls Prilosec

9:00 pm 2 mls Zantac, 0.4 mls Erythromycin, 3 mls Lactulose

(4 prescription meds and her multivitamin)

Her new daily med plan will be like this:

miralax powder mixed with milk, food, or pedialyte once per day
1.5 mls Vitamin (by NG or divided in several bottles when the NG is gone)
2 mls Zantac morning and night

(1 prescription med plus miralax and vitamin OTC)

I think it will be a lot easier!

The Special Care Clinic has pretty much always controlled Sofie's meds, feeding recommendations, and everything related to her oxygen. We've only been able to see Dr. Y. for immunizations, regular well baby check ups and if Sofie were to have any problems like colds, earaches, thrush, etc. Since she's been healthy except for her first cold last month and a mild case of thrush just after coming home from the NICU, this means we don't see Dr. Y. very often and he doesn't get to be too involved in her plan of care.

I told Dr. Y. I wished we could see him more often, because now that Sofie's older we only see him every 3 months, and with so much happening with regard to her feeding issues I feel like he really gets out of the loop. We also get frustrated going to the Special Care Clinic and getting negative feedback all the time. He recommended we come back to see him in 6 weeks to have a weight check and discuss her feeding progress, so we'll be back in to see him the first week of February. Sofie will also be in his office again in 1 month to receive her 3rd RSV shot, but we will probably just see the nurse for a quick shot and back out the door unless she is having any problems.

His recommendation was to continue weaning the NG and if we felt she was falling behind with her weight and needed extra calories we could offer oral feedings through the night. He said to continue PO feeding ad lib during the day with no NG supplementation. Then to offer a 4 oz bottle at 1:00 am and 4:00 am. If she doesn't take it, then we can give it by NG, but quickly over 10-15 minutes to mimic the way her stomach would fill and then empty if she were actually eating. We should also only give regular breast milk or formula that's 20 calories/oz (thickened of course) at night to try to prevent it from zapping her hunger during the day. If we try this for a few days and find she's less hungry during the day, we should dilute it some to 15 cal/oz so she's still getting the volume for hydration and some extra calories, but it might not be as filling to her as 20 cal/oz. It's just a bit different strategy to get some more calories and fluid in so we can continue to wean the NG. He also mentioned that all he would expect her to take from her bottle is 4 oz at each feeding. I told him the Special Care Clinic told me she should be taking 7 ounces at each feeding and that I thought that was way too much to expect her to take, and he agreed. I've had lots of moms tell me their kids never took more than 3-5 ounces at a time, and he again reassured me that's very normal.

I just felt so much better walking out of that appointment than I ever feel walking out of appointments at the Special Care Clinic. Dr. Y. knows her history and understands her special needs based on that, but also treats her like a normal baby and reassures me that's how we should be thinking of her as well, like a normal baby now. I feel like the clinic sometimes makes her out to be "sicker" than she really is when she really is doing fabulously. It was a nice change after our appointment on Wednesday and I needed it.

I was feeling pretty good about everything as I left Dr. Y.'s office, but I had to laugh when I looked down and realized I had worn my houseslippers. Hey, at least they matched my outfit.