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.

Blessings in Bunches

First of all, I'd like to announce that Sadie slept in her own bed in her own room last night for the first time ever all by herself!! 12 hours she spent in there without a peep...we were worried she was dead. Nope, just being a big girl!

It was a little weird at first and I had a hard time falling asleep knowing that she was on the complete other side of the house. But I have a cold and eventually I stopped listening as hard as I could to the baby monitor and just fell asleep.

I was thinking about it and I think the last time Brian and I slept without her in the room was the night we decided to unplug her and let her go. That was over a year ago!! It feels good to wake up after a night of not being concerned about tossing and turning and having a baby glued to the side of me. I'm a whole new me!

Second, Sadie had her first feeding therapy yesterday afternoon. Her goal is to just make Sadie more aware of her lips by stimulating them and causing her to realize they exist. This will hopefully lead to more babbling, sucking food off the spoon better, and eventually biting and chewing bigger pieces of food. So, she gave us this little rubber nubby thing that we're supposed to stick in Sadie's mouth and rub around her gums before she eats, as well as rub along her lips. Then she had this tiny little vibrator that she put on the outside of Sadie's mouth to stimulate awareness. As soon as our therapist left, I fed Sadie and I was amazed at how well she ate! Maybe she was starving. Or maybe all that stimulation made her want to eat. I don't know, but I did it again this morning and I had the same results.

She is also doing really well with little toddler food meltaway bites. The ones we have now are freeze-dried strawberry yogurt bites and Sadie just ate like 10 or 12 of them in one sitting, which is a lot for her! We need to get some more calories in her, so hopefully this new skill will open up the possibilities for us to do that.

Finally, we went to see the pediatrician today for Sadie's 12 month well baby checkup (I'll blog about that separately) and we had a nice quiet car trip both ways!! Plus she was a happy baby while we were there!! I'm really enjoying this big girl!

Shifting Paradigms

Yesterday I went to WalMart. Iused to love WalMart...when I lived in Eugene. But there's something about a big city that causes all the riff raff to come out of the wood-work. And they all seem to shop at WalMart. Come on, you've seen those websites of the ridiculous pictures of people taken with camera phones at WalMart. I don't go to WalMart anymore...except that the closest branch of our bank is in the WalMart that is about 2 miles away from our house. So yesterday I went to WalMart.



I don't know if it had to do with the emotions of the week and Sadie's birthday and sad memories, but I started looking at those snotty grungy low-income kids all running around their mom in the motorized wheelchair and I started grieving again for what my child isn't. The thoughts of "it's not fair" started creeping back in. But then it hit me: what in the world would that woman, who can't even walk well enough to get herself around WalMart, do with a baby like Sadie?! And all of the sudden my perspective changed. I realized that it's not about how I got the raw end of the deal, but about what Sadie got out of it.



Sadie got two parents who love her and accept her the way she is. We have the energy to deal with her irritability and her insomnia. We have the means to support ourselves and all of Sadie's needs. We have the intelligence to ask the right questions and find the right people. And we have the support of family and friends who love her even without ever meeting her (or us). All of that isn't fair either...but not in the same way.



So yeah, I still struggle a little with jealousy that my kid can't really use her hands, doesn't self feed, and is nowhere near moving independently from one place to another. But I am thankful that God gave Sadie to us and not someone who couldn't handle her or maybe wouldn't love her as much. And probably for the first time in however many years I've lived in Phoenix, I walked away from WalMart feeling satisfied with my experience there

so hard to say goodbye...

I know it's good to focus on all the good things in life, but I think it's also important to remember the hard times so you can see how far you've actually come. Today marks the one year anniversary of the day Brian and I made the hardest decision we've ever made. It was the lowest point in my life.

Last night as I was laying in bed, I thought about how a year ago this night we were making a decision to unplug Sadie and let her die. What we didn't expect when we got to the hospital the next day was that we 'd have to make that decision so soon.

One year ago today we prepared ourselves to say goodbye to our brand new tiny baby. We unplugged her breathing tube and waited for her to stop breathing, but she never did. So, we passed her around and all our friends and family, the ones we love the most were there and got to hold her for what we thought would be the only time.

We are so lucky to have so many good friends. And we are so lucky that we still have our little girl. And today she still breathes just fine on her own!

On this day in history...

One year ago this morning was the first time I was allowed to hold my brand new baby girl. She was 4 days old and had just completed 72 hours of brain cooling. She had a breathing tube in her mouth, an EEG wrapped around her head, and all sorts of wires and cords attached to her body.

I know that she knew it was me that had her, and I'd like to think that knowing that her mama was there loving her made her fight to hang on. She was so little and so helpless and I loved her so much more than I ever imagined. That day I felt more sadness and more excitement than I ever had in my life

Little did I know that the next 24 hours would be the hardest day of my life.

The Sound Screen

Back in August when we had to spend some nights in the hospital, we found out that white noise is straight from heaven. I quickly downloaded an app on my phone and we played white noise all night every night...until my battery blew up. This week we bought something called the Sound Screen.



Here is a video of how it works.



The thing we liked about this noise machine is that 1. it plugs in, which is nice since we play it for 12 hours at a time and that burns through a lot of batteries. And 2. it's not electronic, just air forced through some holes.



It works great! Sadie has taken 2 naps in her bed this week and went to sleep in there tonight (with some help, of course). The goal is to use it to transition Sadie to her own room.



Wish us luck!

Guilt over a Homebirth?

Ever since my interview on the radio this last week, I've been thinking a lot about guilt. We discussed guilt a little bit as when something like this happens to your family, guilt is probably a common emotion. But I've never felt guilty.

I think when I tell people about what happened to Sadie at birth, they automatically assume it was because we had a homebirth. But, I've thought a lot about that and I really think having a homebirth is what saved Sadie's life. For one, we had awesome midwives with a lot of experience and they did the right things right away. But also, there wasn't a rush through my labor, there was no intervention, and no emergency C-section. Because we had a homebirth I wasn't kept in the hospital for a mandatory 24 or 36 or 48 hours. I slept in my own bed that night and I went to see my baby the next morning before it was even light outside. My midwife even spent the night on my couch to make sure I could go to the bathroom in the morning...and she made me breakfast!!

Sometimes I wish we hadn't had a homebirth just because now my friends are scared to death of having babies at home. I hate having people ask me if things would have gone differently if we'd been in a hospital. No. Actually we had several people in the NICU tell us that the homebirth was not a factor in Sadie's situation. She was sick, and she had been for probably a couple of weeks. No doctor, no ultrasound, no extra intervention during labor could have seen that...and just like my midwives, they wouldn't have even looked for it since everything was healthy and going perfectly.

When I look back on my pregnancy, with 20/20 hindsight vision, I can now see the warning signs that we should have followed up on. But it was my first pregnancy and everything was healthy and going well, so we had no reason to be alarmed. But I don't feel guilty about that, I didn't know any better.

I understand guilt. I understand feeling like something like this is your fault. and I understand thinking: if I had only done XYZ differently. But I did everything right. So I have no reason to feel guilty.