Sadie's 2 year well check

It's sort of strange to think about that it's already been two whole years since we were in the NICU, since we met Dr. Wendy, since we thought our baby was going to die. But, I was always told when I had a baby that time flies...and I'm not really sad that it has.

Sadie and Grammy and I went to see Dr. Wendy today for Sadie's two-year-old well check. And there was no car screaming. And there was no nursing in the lobby just to keep her quiet. ANd there was no wrestling the stroller through doorways and down halls (the wheelchair maneuvers like a dream!!). And there was no stripping her down and laying her on a scale stark naked and screaming. And there were no shots. And I started thinking that maybe I can handle this!!

Sadie still isn't feeling completely 100%, but she bucked up and did a good job. We weighed her @ 27lbs. We thought this might be a little light...but she has been sick for the last couple of days. Even so, she's still holding strong in her weight percentile!! We measured her length too, but I didn't take note of it...somewhere in the 40s? I don't always rely on a perfectly accurate length measurement because Sadie doesn't lay flat usually, so they have to pull her legs, which results in her head moving down, which I'm supposed to hold against the wall, but I never can do it perfectly. So who knows how long she REALLY is! haha

I've heard rumors that Dr. Wendy is the only special needs doctor now at this clinic, so since it's a teaching hospital, we always see a resident first. I guess it helps Wendy out a lot, but it's sort of annoying. Because they don't know us, and it's a lot of work to explain everything to them and then have the same conversation again with Wendy when she comes in later. I know they need practice, so whatever, but it's still annoying.

The best thing about this appointment was learning that Sadie's lungs and ears are clear. Having her be sick with a cold (really for the first time) I was a little worried about these 2 things. But it's just a cold. And the doctor, who was a little over cheerful for anyone's good, assured me that what's going around shouldn't last longer than 5 days, even though that snot might stick around for a couple more. (I can already tell that Sadie's feeling better!)

When Wendy came in, we mostly talked about her authorizing that Sadie could benefit from an hour of speech each week (in addition to her feeding therapy), and the letter from the OT about getting a swing. And Sadie was good enough to show off her independent sitting, which Wendy was amazed by.

We have a big girl. A healthy girl, and even though we need to come in and have somebody check Sadie's weight every 3-4 months, we don't have to have another well-check for a year! There was even talk about having well-checks in the summer since Sadie's birthday is during RSV and flu season. Now THAT'S a good idea!!

And on to a new year and new things!!

18 mos check up

Sadie saw Dr. Wendy today and I think this was our first well baby appointment that didn't involve ANY screaming! We had 16 mos of car screaming and I am SO GLAD we're done with that. Now when we go places I think Sadie actually enjoys being in the car.

Dr. Wendy continues to be impressed with Sadie. Remember, we first met Dr. Wendy in the NICU, so she REALLY knows how far Sadie has come. She looked at Sadie's G-tube and was very impressed with how healthy it looks. She said it might be the best one she's ever seen so fresh. That makes me happy. The thing about Sadie that always amazes me is how healthy she is. She has been sick maybe twice, she heals up from cuts or scrapes and things. She never gets bruises. She is just really healthy.

Sadie got weighed and measured and she's back on her original weight curve, the one she was on when she was born. So, we're really happy about that! And she's in the 75th percentile for height!! So, those of you who comment on how tall she is all the time? You're right! She is long and skinny. Her head is not really growing very fast, but it is making its own curve that is paralleling the normal curve...it's just WAY below the charts. It's okay though, we're happy with the head we got and we love every LITTLE bit of it!!

We talked about all the things Sadie is doing. How she can almost sit, and she can get her (left) hand to her mouth. I told her that she is very good at communicating, and that when her mouth doesn't hurt, she can eat 5-6 oz of food (even though she still won't drink)! She sleeps all night, and even though she hasn't since we've been home from the hospital, she has been pretty good about taking naps. She has gotten all her teeth except her fangs (top and bottom) in the last 6 months, so that's been hard...but she looks like such a big girl.

We asked for a prescription to attend PT twice a week, because I feel like Sadie is at a place where she can finally really participate and benefit from therapies. Dr. Wendy was glad to write that. We also talked a little about a Kid-Cart, which is like a wheelchair stroller. I think that's going to be our next big piece of equipment.

Dr. Wendy said as long as GI was keeping an eye on her nutrition and tube and we didn't feel like we needed anything, she'd see us again when Sadie's 2!! Can you believe Sadie's going to be 2 in less than a year?! It seems like just yesterday when we were coming home from the hospital with this bundle that wasn't supposed to make it even a couple of days. Yet, so much has happened and we've come such a long ways that now we're facing 2. Wow.

Sadie's 12 month checkup

We saw Dr. Wendy yesterday. Sadie had a good trip to the dr. No car screaming at all...and then she got fussy about when we walked through the door of the building. But it was nothing a little nursing couldn't cure. I love when you're 10 minutes early for your appointment so you think you have a little time to sit down and nurse your baby in the lobby, then they call you back early. But when you're late...then they make you wait. So backwards!

Sadie got weighed and measured and then we went over what medications she takes and how much she gets blah blah blah. When we finally saw Dr. Wendy, it didn't surprise me the first thing she said, "do you believe her weight? Do we need to reweigh her?" Nope. She's skinny.

Sadie barely weighs 18 pounds. And she's been at that weight for about 4 months. 4 months ago it was fine...but everytime we've come back to see the dr. she drops on the charts for weight. At her 9 month appt she went from the 50% to the 25%. Now she's at 0%. The funny thing is, she's so tall she's going up in percentiles in length! I think she's also fighting her genetics. Brian was a skinny baby, and a skinny child, now he's a skinny adult! Sadie is built a lot like her daddy.

At 9 months, we talked about getting speech/feeding therapy involved...which of course didn't start until this week. Now we're talking about getting GI involved. Dr. Wendy says, "only because they have nutrition specialists in that department." There is no talk of a G-tube...yet.

For now we need to beef Sadie up. Wendy wants to see her again in a month to reweigh her. We have 4 weeks to pack pounds (ounces?) on Sadie. We want that weight to increase so that we don't have to go see another dr. So, we're adding oil to Sadie's food. Olive oil, coconut oil, flax oil...did you know these are all about 130 calories per Tablespoon?! That more than doubles a serving of Sadie's food at a meal. She should be getting close to 800 calories a day (according to the internet) and she's probably getting barely half that. It's hard because we can't just sit Sadie in a high chair and give her a pile of cheerios to feed herself. Eating for Sadie is work. And she can do it, but it's work. We're also trying to feed her snacks. She's getting better at eating finger foods (although it's more about mommy and daddy's fingers than Sadie's) and she got these freeze dried yogurt bite things for her birthday that she really likes. She sucks on them and they melt and stick to the roof of her mouth and she works on it and works on it. They keep her from being bored, they get her more calories, and they make her practice using her tongue and facial muscles. So, those are really good too.

Beyond the weight thing there weren't really any concerns at the checkup. Sadie is going to get another vaccine, but I requested that we wait until 15 months as she was a little sick this week. We've all been a little sick this week. We looked at her teeth and talked about how we can't believe it's been a year. We discussed equipment and letters of referal from PT. I told her that now that we have long term care we have respite and everything is free again. And then we said goodbye.

It was a pretty good visit...now it's time to go feed my baby again.

Sadie's 6 month checkup

Sadie saw Dr. Wendy today for her 6 month checkup...well, sort of. PCH always gives a call a couple days before your appointment to remind you that you have one, and our call on Monday said we had an appointment with Dr. Ruane. WHAT?! So, I called on Tuesday and was told that the two special needs doctors (Dr. Shaw and Dr. Wendy) are so booked up that they have two new doctors helping, but Dr. Wendy will be accompanying Dr. Ruane. I think that's what she said anyway...she obviously didn't have a degree in communication.

We had a rough trip over there, lots of screaming, had a hard time finding a parking spot, late to our appointment (which, you know, then I was "punished" for by making me wait longer), I was a stressed out mess (and Sadie was worse) by the time they called us back. Then a doctor I didn't recognize walked in and Dr. Wendy wasn't with her. I probably sounded like a fool, but I told her I really wanted to see Wendy because she knows us and I don't want to start from the beginning with somebody new because I don't have the energy for that. She reassured me that Wendy filled her in on Sadie, and that we'd be able to see Dr. Wendy before we left. Whatever.

I proceed then with Dr. Ruane, and as soon as she asks me how Sadie is doing I break down and start crying. At this point Wendy would have hugged me, but I don't know this new lady and here I am sobbing to her about how my baby won't sleep and I am so tired and I just want things to change. Really, she's got nothing for me...do they ever? Will they ever? But we continue and I go down my list of questions and I'm starting to really like her and she's lovin' on my Sadie, and it all turns out okay in the end...until we have to get back in the car to go home.

First of all, Sadie weighs 16lbs 5oz and is 26.5 inches long!!! But her head is the same size it was at her 4 month appointment (I'll talk more about that later). She is healthy. No fluid in her lungs, no breathing/heart/eye/ear abnormalities. I asked about her hips though. She keeps her hips very tight (which probably has a lot to do with the not sitting yet) and her legs straight. We've been working a lot on this at home, but Wendy said that many HIE babies will straighten those hips so intensely that they'll pop their hips out of socket. We want to avoid this obviously.

I had a good talk with Dr. Ruane about starting solids and she said her and Wendy had talked about that and agreed that it was probably okay to start Sadie on stage one foods. Looks like we're going to start with some pureed butternut squash! I was told to put some in her mouth (I'll probably use my finger at first instead of a spoon because of her mouth aversion) and see what she does. I was told to expect a little tongue thrusting, but after a few tries she should be able to swallow it. If, though, she's not swallowing it easily and really still tongue-thrusting after about a week, then we stop and wait another month. So we'll try that probably this weekend. Brian is out of town right now and I want to make sure he doesn't miss this, it's sort of a big deal!

I also talked with both doctors about a new neurologist. Both of them recommended Dr. Williams, who actually happens to be our doctor when we're admitted for the big EEG. They said he's very nice, and Wendy mentioned she's been in family conferences with him and was very impressed with how he interacted with the families. Wendy also said it can be tricky switching neurologists, so she is going to try to get things going from the back end before we call and make an appointment. Honestly, I'm not too concerned about it. She's my baby, I should be able to see who I want! But I think it has to do more with insurance since the doctors are in the same practice or something. Whatever, we'll meet Dr. Williams in a couple of weeks and we can maybe talk about it then.

After we were done talking to Dr. Ruane, she went to get Wendy and when they came back she must have told Wendy about my little meltdown because she came armed with prescriptions. She said the best she could do about the sleep is to give her Adavan. We already have this drug, and we reserve it for drastic situations where there's been crying for hours and hours and we've ALL reached the end of our ropes and tapped out our resources. I don't like using Adavan because it makes Sadie sort of dopey the next day, it really takes 24 hours to wear off. I feel like if we used this on a regular basis, 1. Sadie would never learn how to sleep, and 2. it would stunt her development by dopng her up. So, I declined. The prescription was for 2.5 times more than what we give her now anyway! Wendy said she would have declined it as well. She told me it's easy advice to give, but hard to take and she wouldn't have taken it either. That made me feel better. It's not about me right now anyway, someday I'll sleep again, right? Someday?

And finally, I asked about the MRI. Wendy said there were a lot of big doctor words that she didn't really even understand, but the gist was that they see no improvement. Things aren't really getting worse, but they still see a lot of damage and that isn't healing. This news made my jaw drop. How could there be no improvement?! She can nurse!! She is rolling, and smiling and "talking" and we're going to start giving her solids!! But the simple fact is that her head is not growing, which indicates that her brain is not growing. Wendy did tell me, however, that she sees progress and that if Sadie is meeting milestones, who cares what the MRI looks like. That was a little encouraging. But I did go home with visions of wheelchairs and drooling and eventually dying from seizures at the age of 12 in my head.

I guess overall I should count it as a good day, there were definitely more good things than concerning things at this appointment. It's just that if we were to weigh them on a scale that MRI would outweigh everything by a lot. It shouldn't, but it does, and it's hard not to focus on that ONE piece of news. But life goes on. Sadie is what she is and we love her this way. And if her development plateaus or if she soars beyond everyone's expectations, it is what it is. This is the child God gave me, and I am thankful she is so healthy in so many ways. And she's cute too! Man, she's cute!