Saturday, May 29, 2010
When we brought Sadie home, she was on hospice care because nobody thought she'd make it through the week. Her brain was mush, her kidneys (and liver?) weren't working properly, she couldn't suck or swallow, in fact we were told if we chose not to feed her that was okay. I still remember the nurse who came over that first day to do paperwork with us. She told us that what happens in cases like ours is that often the baby will aspirate liquid somehow and end up getting pneumonia. Then probably the pneumonia will continue to haunt Sadie's lungs and she'll end up dying of that. It was a pretty grim time...yet, to us at that point, it sounded good!
Obviously Sadie exceeded everyone's expectations and was "graduated" from hospice on April 2. We were then referred to, I believe, 2 state-run organizations: AZEIP and DDD. This is where it gets confusing...
Arizona Early Intervention Program (AZEIP) is who we saw first. A girl named Kara, who looked like she was 22 years old, came over and asked me a bunch of questions about Sadie. This happened on April 14. She wanted to hear Sadie's story (which gave her chills and made her get a little teary-eyed), asked me what my goals are for Sadie, what my concerns are, and had me sign a bunch of release forms so that they could access doctor's records. I also gave Kara a letter from Dr. Wendy (our pediatrician) stating that Sadie has been diagnosed with a seizure disorder and is currently taking medicine for these seizures. The reason I gave Kara this letter is because, having seizures makes Sadie automatically eligible for DDD (Division of Developmental Disabilities). What?! I know. I'll explain in a minute.
The next week, a lady named Lloydchell (yeah, I asked her to spell that for me!) came over and asked us a bunch more questions about Sadie's development. This was April 19. She was evaluating if Sadie has significant delays, or if she's right on. To be eligible for AZEIP you have to be significantly behind in developmental milestones in order to qualify. And if you do qualify, you're eligible to receive state-funded services for physical therapy, occupational therapy, speech, etc. Lloydchell said that the speech-pathologist needed to come out and also evaluate Sadie before they could make a final decision, but that according to her observations, Sadie was not delayed enough to be eligible. This is also what Dr. Wendy thought. But remember, Sadie has seizures, so she's automatically eligible for DDD. I promise, I'll explain what that means.
Jenny, the speech-pathologist came over April 29. She was a great lady, and actually had had a baby the same week Sadie was born! She found the same thing as Lloydchell, and told us again that Sadie would probably not be eligible for AZEIP's services. But it was encouraging to hear her compare Sadie to her own baby and talk about what her baby is and is not doing yet. It sounded like Sadie's pretty normal about all things speech...well, at 3 months old at least. I posed the question to Jenny that many of you are asking, "So, if Sadie isn't eligible for AZEIP, then what do her seizures make her eligible for?" Up until this point I was under the impression that AZEIP and DDD were the same, just AZEIP focused on kids 0-3 years old. Wrong. AZEIP and DDD are different, but every kid under 3 has to be evaluated by AZEIP before they can even get to DDD. Even though we have a letter stating that Sadie has seizures, AZEIP had to waste a bunch of time evaluation her development only to find that she's not delayed enough to qualify for services, which doesn't matter anyway because all along she's been eligible due to the seizures! And if you're keeping track, you'll realize that at this point it's been 2 weeks since we've seen Kara and 4 since we were exited from hospice.
So what happens now that we've seen Lloydchell and Jenny and been told by both of them (and Dr. Wendy, don't forget) that Sadie's development isn't delayed enough to qualify for services? They have to write up a report, give their findings to Kara, who then has to hand over the case to DDD...since Sadie is automatically eligible for their program. Why couldn't this just be done in the beginning? I don't know...seems like a waste of time doesn't it?
I called Kara when we returned from Oregon on May 17 (over a month from when she first came out). We had received a letter in the mail from Kara while we were gone telling us that "Lauren" didn't qualify for services from them, but because of her seizures, would be eligible through DDD. (I think Kara forgot to proofread her form letter...maybe she had a bunch to send out that day.) Kara told me that she had given everything to DDD that day and that we should be hearing from them by the end of the NEXT week (which was this last week that just ended). I didn't want to wait anymore, but it seems that this is how the wheel turns when dealing with the state, very very slowly. Meanwhile, Sadie has missed out on 6 week's worth of therapies she probably could have benefitted from.
I spoke with Kara Wednesday, she told me she had talked to our DDD coordinator that day (her name is Annie), and that we should hear from Lloydchell and/or Annie no later than Monday to schedule a time to come out. See, that's what's cool about hospice/AZEIP/DDD, they come to your home. We are also going to see a psychologist at PCH (Phoenix Children's Hospital) who will probably give us therapies through the hospital, but we have to GO to the hospital to do that...and you know how Sadie feels about the car! The next day Lloydchell called me!! I was thrilled. I really feel like these ladies want what's best for my child and my family, but their hands are tied by this bureaucracy of state-run programs. They understood that I'd been waiting a long time to get started with a program that I'd been told from the beginning my daughter was automatically eligible for, and they got the ball rolling as soon as they could do anything about it.
We're meeting with Lloydchell and Annie (the DDD coordinator, who apparently is our golden ticket in this program), June 3. I am really excited, let's get Sadie in some state-funded therapies (this means not having to deal with insurance companies!) and let's get her rolling, grabbing, and learning to suck on a bottle. And let's do it all in the comfort of my own home!
Stay tuned for more updates on Sadie's therapies and how DDD is working out for us.
Friday, May 28, 2010
Recently I've had more friends who've had babies, one a few weeks ago, one today, another one is due in about a month, and this conversation has come up a couple of times with them. What "they" don't tell you about having a baby. Everybody says it'll hurt like hell...especially if you tell them you're going natural and having a homebirth. And it does...hurt like hell. And they tell you you'll be sleep deprived, or that they grow up so fast, or that your body will never be the same. But what do they NOT tell you?
1. All your hair will fall out. When I got pregnant everybody asked me if I was loving my thick, healthy hair. But mine didn't get thick right away. Apparently, pregnancy hormones are supposed to cause your hair not to fall out like it usually does, so you don't get those hairballs in the shower and stuff. Mine didn't do this right away, so I didn't really know what people were talking about. But, when it did, it was awesome. But I didn't really understand that after I have the baby, it'll all fall out. And I mean crazy amounts of hair coming out! And now I'm back to removing my hair ball when I'm done showering everyday.
2. Things are sore "down there" that you didn't even know existed, let alone could be sore...for weeks. Sure, it'll hurt when you're having a baby, but nobody told me that I wouldn't be able to sit comfortably for a week, or that my BONES would ache between my legs!! For like 6 weeks when I'd go for walks, or even around the grocery store, my pubic bones would just throb, it took a long time to go away. Even still, after 4 months, they're not quite the same.
3. You'll probably wear a diaper for a week or so. Yes you, I'm not talking about your baby. At my shower a friend gave me some adult dipes (I know, nice gift, huh? But I was really thankful for them later!), and I had no idea why...then I had a baby. Apparently your body just purges and purges until it gets rid of everything...it's gross.
4. Sex hurts...a lot. I don't know if people don't tell you this just because they don't talk about sex, or because they don't want you to know because then you'll never have a baby and get to experience all the cuddly joy that babies bring. But it's definitely not the same, and I'm starting to worry that it never will be.
5. That baby is REALLY small. I got all these precious little newborn clothes in doll sizes and I thought, "Sadie will never fit in these if she's gonna be that big 8 lb baby that is predicted!" But when we finally got to bring her home she weighed 8.5 lbs and most of those clothes were baggy on her! I was shocked at how little she actually was. On a side note, when we've received 9 mos+ clothes we thought, "our little baby's gonna be THAT big?! Impossible." But here she is in 6-9 mos clothes and now it seems not that far off!! Weird how fast they grow...
And that's all I can think of for tonight. But, I'm curious what your big surprises were when you had your first baby. What was it you experienced that "they" didn't tell you about?
Thursday, May 27, 2010
Epilepsy, or seizure disorder, is diagnosed when an individual has had 2 or more seizures…ever. Often the cause of epilepsy in an individual is unknown, in our case, it’s due to brain injury. Others can have hereditary epilepsy. A seizure is a sudden jolt of electricity in a person’s brain. Some seizures are hardly noticed, while others will completely disable a person for a short time. People who have had one seizure are more likely to have another if they have experienced some kind of brain injury. One way for a doctor to tell if one might have another seizure, or develop epilepsy, is to do an EEG (electroencephalogram: electro= electricity, encephalo= brain, gram= chart/reading). So, when you hear me talk about Sadie’s EEG, you know that it’s a way for her neurologist to look at her brain waves to determine the likelihood of continued seizure activity. In the NICU (neonatal/newborn intensive care unit), Sadie’s EEG showed continuous seizure activity, even when medicated with Phenobarbital and Keppra. This is why Sadie has continued her dose of Phenobarb upon coming home. However, her EEG done at 10.5 weeks showed no seizures, but a tendency for them. This probably means that Sadie’s brain waves on her EEG showed patterns that a person who isn’t prone to epilepsy wouldn’t have. According to research done by epilepsy.com, .5%-2% of people will develop some kind of epilepsy during their lifetime, about 2.7 million Americans have been treated for epilepsy in the last 5 years, and it occurs more often in men than in women.
The most common to develop epilepsy are children, and often in the first year of their life. How scary is that?! To bring your baby home, only to witness a seizure in him/her months later? I am so thankful we have never witness Sadie having a seizure. But in reality, anybody can develop epilepsy. Up to 70% of children with epilepsy can find relief in medication, however, they often experience side effects of these medications. I also read on epilepsy.com that about 80% of people treated for seizures with medication will be seizure free for at least 2 years, many never have another seizure again. This, in children, is referred to as “growing out of seizures.” Of course, this is more likely to happen when there hasn’t been an assault to the brain and if there has been a normal EEG…that’s 2 strikes against Sadie. However there’s still time, she’s only 4 months old!! Obviously the longer one goes without a seizure, the more likely it is they will be seizure-free in their lifetime. For about 30% of these people, being seizure free means continually taking medication to control their seizures. Epilepsy.com says that many neurologists will consider ending medication once a person has been seizure free for 1-2 years, however, many moms of babies with HIE say their babies are weaned down from the phenobarb between 4 and 6 months. This is what I’m pushing for.
Even if it is confirmed that Sadie has epilepsy, it shouldn’t effect her life expectancy. In general, seizures are hardly ever fatal. What may cause death in someone with epilepsy are grand-mal/tonic-clonic seizures for more than 30 minutes, choking and suffocating on vomit or water (if swimming or bathing), or going unconscious/falling somewhere that could be life threatening (ie. while driving, on a train or subway platform, or even walking along a busy street). Sadly, epilepsy is one of the most common neurological disorders among us, and it doesn’t fit in a nice neat package, it has a wide range of effects. Recently, more awareness has been created for epilepsy, and words like “seizure” generate less fear in our generation than they did long ago. Long ago, people thought of epilepsy as a curse from the gods, or that they had the power of prophesy. Many who would hunt witches looked for signs of seizures when identifying one. Later, those with epilepsy were thought to be psychologically disturbed and spent their lives in mental hospitals. But people with seizures were kept separate because people thought seizures were contagious. They also weren’t permitted to marry, have children, and some were even made sterile! Luckily, epilepsy continues to be studied and our knowledge of brain function has increased greatly.
People with epilepsy are often not cognitively challenged. Unless the seizures accompany a primary disorder that effects cognitive function (like HIE?), epilepsy will not cause a person to be smarter or dumber. Here is a list of geniuses that you may have heard of that have all been diagnosed with epilepsy on wikipedia. Here is another one sited on epilepsy.com of famous people with epilepsy. Epilepsy should not be a barrier to success. Although sometimes lifestyles need to be altered depending on the severity of the seizures. The biggest component of living a successful life with epilepsy (besides good medical care) is attitude. Parents of children with seizures should remember that it’s no different than other medical problems like diabetes or asthma, and that kids’ accomplishments need to be praised just like any child so that they can build good self-esteem. No matter what Sadie's outcome is with seizures or other disabilities, it is important to us that she 1. knows that she is loved, 2. knows that we will support her in anything she wants to do, and 3. we will always push her to do her best without comparing that to someone else's best.
There's a ton more information out there about types of seizures, EEGs, treatment of epilepsy, and seizure medications. I encourage you to do some more research, educate yourself, and keep reading about Sadie to see how her seizure disorder plays out.
Wednesday, May 26, 2010
It's the age-old question. Why do bad things happen to good people? When faced with something bad happening to you or someone you love, I think that is a very normal question to ask. This weekend, a little boy at our church was diagnosed with Leukemia. His mom and I were pregnant at the same time when I was pregnant with Jack. When I heard the news, I was really shaken. I started crying. It's not fair. He's a vivacious, active, seemingly healthy 4 year old boy. How could this happen? A few months ago, my best friend had a beautiful baby girl, and because of oxygen deprivation at birth, suffers from brain damage. How could this happen? It's not fair. Another good friend of mine, suffered the loss of her baby girl in the womb a little over a year ago. I haven't been exempt from my own loss as well. Before the birth of Nathan, I suffered two miscarriages. One of which required an operation to remove the baby.
I've spent a lot of time in the past year and a half really thinking about what it means to balance faith with hurt and loss. What does it mean to "praise Him in the storm" as the song says? The common denominator in all my examples is children. When an innocent child is the one in pain, or the one that dies, it's a tough pill to swallow. I heard a perspective yesterday that made a lot of sense. Our minds see time in a completely different way than God does. Before the foundation of the earth, God had already seen the Lamb of God being slain. When I see a 90 year old man suffer from cancer and die, I think, "wow, what an amazing life he lived." When I hear a 4 year old has been diagnosed with cancer I think, "wow, he still has an amazing life to live. He's too young to go through this." God has already seen our lives. He already knows what is going to happen in our lives. In God's eyes, it has already happened. Does it make the pain any easier? I don't know yet, but I do know that it was a good reminder of God's sovereignty.
I'll never forget when I had the operation to remove the baby. It was a very traumatizing experience. On the drive home that evening from the hospital, I was very emotional. I was crying in the car and Jack was a little upset by it. He asked me why I was crying. I told him that I was sad that the baby had died. To this day, his response brings tears to my eyes. He said, "Is the baby in heaven?" I said, "yes Jack." He said, "Didn't you say heaven is a good place?" Of course, I said" yes Jack, heaven is a wonderful place." He then said, "then why are you crying?" I know that life isn't always that simple.
Sometimes it isn't comforting to hear the standard "they are in a better place." But I know this much. God's Word IS truth. He has told us many things about suffering and loss. It is not my place to question his authority. It is my place to say "God, I don't understand. But You are still God. You are still on the throne. I WILL still praise You."
Tuesday, May 25, 2010
I borrowed Dr. Sears's The Baby Sleep Book from the library and I've been reading it to get some advice on our sleeping situation. For the record, at night we sleep pretty well. We start with a bath around 6:00, then we chill for probably a half hour, sometimes Sadie nurses, sometimes she bounces, depending on how hungry she is. We do medicine at 7, and I nurse her to sleep after medicine, which takes anywhere from 1 hour to 2 hours (I get to watch a movie pretty much every evening!), put her down in her own bed (which is the pack 'n play in our room right now), then I get about 2 hours to myself before I go to bed in MY own bed with only my husband. She usually sleeps about 8 hours, then wakes up and tells me she's hungry. At this point, I bring her into bed with me, and we both fall asleep nursing for another 3 to 4 hours. This schedule works for us...when it actually goes like this, which is most of the time.
But naps. Naps are a WHOLE different story. There is always a morning nap, and an afternoon nap, and sometimes an evening nap after bathtime if the afternoon nap was lacking in substance. But they don't always happen, and having a GOOD nap on a consistent basis is where we're struggling. So, Dr. Sears to the rescue, right?
Naps are important because they improve emotional well-being and brain maturation (and we need all the brain help we can get!). Naps also reduce the level of stress hormones in a baby, which is why when your baby doesn't sleep, he/she gets cranky and fussy and stressed out. This is also why when Sadie is stressed out, even a 10 minute snooze will settle her right down. The more stress hormone a baby has, the harder it is for them to sleep...this is why good sleep begets good sleep. And why keeping a baby up during the day does NOT help them sleep better at night. Babies who get all stressed out during the day bring all that stress to bed with them and have trouble sleeping peacefully and for a long time at night. What I've noticed in my own child is that a really good nap is better for her irritability than any medicine the dr. gives us!
Sears says that a 3-6 month old needs 14-15 total hours of sleep, 2-3 naps a day, which are 3-4 hours. Well, we know that MY child doesn't fit into any average scales, so we'll adjust these numbers to what I've observed in Sadie. She probably needs 13-14 hours of sleep a day, she gets 10-11 hours at night, so this leaves about 4 hours during the day when Sadie needs to sleep. Dr. Sears also says that a 3-6 month old should have 2 naps a day about 1-1.5 hours long. My goal is that we take an hour morning nap and a 2-3 hour afternoon nap, then if Sadie wants to snooze while nursing or bouncing later in the evening, I won't stop her! But I also want her to be able to take these naps free of mommy-assisted sleep so that I can too get rest.
The first step in this journey is getting Sadie to nap at predictable times. I've learned that if I just let Sadie fall asleep when she's tired we'll all suffer. Her naps will be short, they will usually involve massive mommy-participation (ie. holding or nursing her the whole time, or bouncing the bouncy chair the whole time), and then she'll be more than her usual cranky fussy self in the evening when we want to sit down and eat dinner like adults. So, the solution is to get Sadie on a nap schedule (babies seem to operate REALLY well with consistency) doing the same thing everyday at the same time to promote good napping habits. Plus, I figure since we don't go anywhere anyway, it'll be easy to make sure we're home at nap times for this to happen.
How do I know when these times should be for Sadie? Instead of PICKING nap times that are convenient to me, I want to have nap times that fall within Sadie's patterns of tiredness, so that it won't be such a fight to go to sleep at these times. Remember, my goal is to also get rest when she is napping (and by rest, I don't necessarily mean sleep!) So, we'll start a nap log. This will include what time she took a nap, how long it lasted, and what were the means of falling asleep. Hopefully after a few days of keeping track of this information, a pattern will begin to develop. And hopefully after a few days of doing the same thing at nap time, Sadie will begin to recognize when it's time to take a nap, and just like bed time, will fall asleep peacefully and stay asleep for as long as she needs to.
Today, Sadie took a half hour nap from 10-10:30 in the bouncy chair, it was the kind of nap where she had to be bouncing the entire time or she'd wake up. And when someone came to the door and I had to get up, she woke up...we probably could have gone on longer if not for that. But that's annoying, she needs to be able to sleep independent of me.
Around noon, I tried to lay down with Sadie, but she wasn't having it. I think her morning nap wasn't really enough to carry her much longer than an hour of happy baby time, so she was cranky-tired. We got up and bounced, but as soon as I saw the eyes closing, I quickly scooped her up and took her to bed. She was asleep within minutes. I planned on laying there with her for 30-45 minutes to make sure she was really asleep...but I guess I needed a nap too! And before I knew it, it had been an hour and a half! She did sleep a little longer once I got up, so I did get a little time to myself. She slept until 2:15, which was just over a 2 hour nap!
We don't start our bedtime routine until about 6, so I'm hoping that 2 hours will carry her until then, if not then we'll see if we can work toward a longer afternoon nap. What are your experiences with nap time? Have you been successful at creating a nap schedule? How did you do it? I wanna hear your stories.
Monday, May 24, 2010
Basic word dissection will tell you that microcephaly means "small head." This is my latest and greatest worry over Sadie. Microcephaly is diagnosed when a child's head is lower than the 3rd percentile for their age. Last Monday I measured her head size and typed it into a website that told me she's in the 3rd percentile. She hasn't always been there, that means her head isn't growing as fast as it should.
I quickly started researching, and, as you probably know, the internet can be a blessing and a curse at the same time. I am finding this out VERY QUICKLY!! I saw videos of babies who had big bodies with tiny heads. I read things that said people with microcephaly have shortened life expectancies. I saw pictures of deformities. I read more, I watched YouTube videos, I read more, and I read more and I read more. And all the while I was crying, hysterically at one point. Was my baby's life expectancy going to be shortened? Was she going to look funny (this seems vain, but this is my biggest fear for my child...I don't want other kids to point and ask questions when we go out in public)? She's doing so well now, was her progress going to slow down and cause her serious developmental problems as she grows? I freaked out!!
Then I started to get smart, instead of hasty, with my research. I started "talking" (typing is more like it) to other moms with babies who have HIE. One mom, Sophie's mom, told me Sophie had a severe drop in head growth at 4 months, but by 6 months it had jumped back up to be proportionate to her weight and height. That was encouraging, especially since the pictures I've seen of Sophie at 4 months look very similar to Sadie. Another mom, mom to twins Ethan and Noah who both had HIE told me that Noah is the smaller of the two and has been diagnosed with microcephaly. She explained to me that 1. his body grew in proportion to his head, so he didn't have a tiny head, he's just a small kid, and 2. he's still testing above grade level in school despite his microcephaly. This information helped me breathe a little better and wipe my eyes of the tears. Finally, a third mom, Aaron's mom, told me that his head dropped from the 75th percentile to the 25th percentile and his soft spot was really small, it leveled off for a while, then jumped back up to the 50th. All of these stories of people with REAL experience (not scientists and neurologists) made a huge difference.
I also dug a little deeper on the internet and learned that there are two kinds of microcephaly. There is PRIMARY microcephaly (this is the scary kind that you will find info on if you just google it), which is caused by gene mutation. And there is SECONDARY microcephaly, which is caused by HIE, and stunted brain growth due to injury. AAHHHHH, so they're DIFFERENT! So, all this horrible stuff and these sad sad pictures AREN'T going to be my baby, even if this is her diagnosis. Well, THAT'S a relief!
The next day, we saw the pediatrician. She measured and re-measured Sadie's head, but she came up with the same measurement I did the day before. And she confirmed that Sadie has dropped from the 18th percentile to the 5th. Now...that's awfully close to that 3rd percentile, but at the same time, she had a small head to begin with, so she didn't have very far to fall. There was talk of microcephaly, but no talk of actually labeling it that yet, only conversation of an MRI at 6 months to see what's going on in there. I cried in the doctor's office. But it's okay, and I'm okay with it, because, like Brian says, Sadie is Sadie no matter how she turns out, and we love her because she's her, not because she's in a certain percentile, or because she can do certain things at a certain time that are considered "average." And that is also what the pediatrician confirmed in her words of advice. (It's sometimes hard for me to hear advice from people who have perfectly healthy kids, but she shared with us that her husband uses a wheelchair, so I felt like their family also lives with a disability and so she understands.)
There isn't a lot of information on the internet (that's written in layman's terms) about secondary microcephaly caused by HIE, but I did find this article. It's a little heavy in doctor-speak, but basically it says that Sadie will probably have suboptimal head growth, and she may end up with microcephaly. However, it sounds like those kids who DO have this diagnosis, also have severe motor dysfunctions...and Sadie doesn't seem to have a problem with that. So, again, I'm given hope that since her motor skills seem to be developing on course, that her brain will support them, and in order for it to do that, it MUST grow. And maybe we'll see the jump at 6 months because that's when motor skills start getting more complicated than kicking, holding her head up, and bearing weight on her legs. The waiting is the hardest part.
Oh, and I measured her head again tonight (yes, because I'm crazy and obsessed) and it's grown half a centimeter since last week. So, that's good.
Let me know what you find or have found about secondary microcephaly out there. Paste the link into the comments section if you want. I only say this because I know some of you love to scour the internet for all sorts of obscure articles and information. So, if you find something I'd love to read more about all this!
And one more thing...I somehow forgot to post the picture of Serkan holding Sadie last night. Thanks mom for pointing it out! Here it is!
Sunday, May 23, 2010
On the menu: Homemade Pesto Chicken & Margherita Pizza from scratch
Red Wine (for them, not me)
Fresh Strawberries with Neopolitan ice cream
First I had to make the pizza dough. We've done some experimenting with this bread machine recipe (which requires beer) and found that the cheapest, lightest beer works the best. I chose "Icehouse" for our pizza tonight
In the bread machine ready to go...
One hour and 45 minutes later, and we get...
a beautiful ball of dough. I love this bread machine!! Then I repeated to make another for the other pizza!
Finally! Both doughs done, time to make them pizza shaped. I'm not a pro at this like the guy on the Visa commercial (come on, you've all seen it...hey mambo!), but I'm not bad either!
Two pizzas ready to be dressed! Don't they look yummy?
Time to make the pesto!! Yes, we make our own pesto, no store bought stuff for us!!
First we pick the basil from the back yard...it's so fragrant out there! (making the pesto is Brian's job!)
Then toast and cut up the garlic to accompany the basil.
Put the basil, garlic, pine nuts and oil all in the food processor and grind it up (we like to use the little one when making small quantities!)
Spread the pesto on the pizza...
Sprinkle the chicken on the pizza...
And of course add the cheese!
Soon we were ready to stick them in the oven! Don't they look yummy?
Steam some zucchini freshly picked from the garden...
And Voila!! A meal fit for a king! ...well, at least fit for Turk!
I think Serkan enjoyed it!
Everybody sure cleaned their plates!
We hung out for a while when we were done, the boys drank more wine, I fed Sadie (which is why I don't have any pictures of dessert), we said our goodbyes, and went off to bed. We're sure gonna miss Serkan and his dinner parties. Too bad McKenzie couldn't move here instead so she could join us!
Saturday, May 22, 2010
As most of you have heard, Sadie hates riding in the car. I don't think it's the car so much as the car seat, she doesn't like to be strapped into. So, unless I grab her straight from a nap while she's still groggy, she will scream her head off the entire ride to our destination. It doesn't matter if it's 5 minutes to the post office or an hour and a half to Queen Creek, she doesn't tire out, she doesn't cry herself to sleep, she just screams and screams and screams!! But that's not all. If we're in the car for more than 10 or 15 minutes she will have gotten herself so worked up that when we get to wherever we're going she's impossible to calm down, and she will inevitably puke on the floor, me, a rack of clothes at Target, whatever...she's not discriminating. This, as you can imagine, is somewhat embarrassing, very stressful, and causing me to adopt a hermit lifestyle. Thankfully, I have a good friend who lives across the street, so I still get to visit people. However, because of this (insert adjective of your choice here) behavior, I limit myself to just one trip out a day...if I HAVE to. On the one hand, it saves me quite a bit of money on gas, but, on the other, certain things just don't get done...like grocery shopping, for instance.
Right now in our house we're currently using travel size toothpaste because we BOTH ran out. I haven't shaved my legs in a week because I need a new razor. And BOTH the wii remotes need batteries. This screaming in the car thing has GOT to stop before we're down to our last roll of toilet paper, or things could get out of hand.
Here's a little taste of what I get when we're going somewhere.
Friday, May 21, 2010
Sadie was born at home 2 days past her due date. Everything in my pregnancy and labor and delivery was normal...actually, so normal that my midwife told me I was clinically the perfect patient!! However, we found out later that I was Group B Strep (GBS) positive and didn't know it. We have, after MUCH detective work, determined that the infection (which was found in my placenta and all the way through the umbilical cord) must have stressed Sadie out, causing her to pass meconium, which was aspirated and caused Hypoxic Ischemic Encephalopathy (HIE).
Within minutes of being born, paramedics came to my home and rushed Sadie off to the hospital, where they discovered some brain damaged and then transported her to Phoenix Children's Hospital (PCH). PCH practices newborn brain cooling therapy and immediately got her on a cooling blanket. (HERE is an article about brain cooling and HIE, HERE is another specifically about the Neuro-NICU at PCH, where Sadie was) However, after 72 hours of cooling, they felt like she was still relying on the ventilator to breathe, MRIs showed VERY significant damage, and EEGs were showing continuous seizure activity, even with medication. We were told that IF she were to live her quality of life would be very low, basically she'd be a vegetable. So, we made the heart-wrenching decision to unplug her breathing tube and say goodbye, assuming she needed it to live. It was a beautiful day (and I cry as I write this remembering how hard that day was), all the most important people in our lives were there and everybody took turns holding Sadie...but she just kept breathing!
We spent the next 2 nights at the hospital, Sadie was all unplugged except for her umbilical line, and we all in a family room together. Brian and I took turns holding her all night, expecting that each little episode of apnea was "it"...but it never happened. The next day we started learning how to feed her through an NG tube and conversations with hospice happened in preparation of bringing her home. The day we were gonna go home, Sadie started waking up. We asked Dr. Carballo to do some tests and she found that Sadie was turning around. Her creatnin (sp?) levels were normalizing, which meant her kidneys were healing, and she was starting to cry a little, open her eyes a little, and even move her head some! However, her MRI and EEG hadn't changed, so the prognosis wasn't any different. They wanted to keep her longer (said some level of something was high which indicated there MIGHT be an infection, so they wanted her to stay on antibiotics another 7 days), but her umbilical line was out, and they couldn't find a vein, and since we had prepared ourselves to take her home, and everyone was over-emotional already, we just asked them to discharge her and let us go. We didn't expect her to make it through the week and we didn't want to spend that week back and forth to the hospital.
Sadie is now 4 months old, and she is nursing (that NG tube only lasted about 10 days!), she is cooing, she is holding her head up, and she's even starting to roll (from her tummy to her back) and swat at toys! She screams her head off in the car, but she sleeps 9-12 hours at night!! Now that we have calmed down a bit and realize that Sadie will be here a while, we're searching for information about HIE, and finding other families around the world to ask questions and find support (because sometimes it's scary to ask doctors...and a lot of times they don't know since every case is so individualized!). I'm excited and anxious and scared to see Sadie grow when there is so much unknown and such a wide range of what could happen. We hope to start therapies soon and hopefully that will help, and as time goes by we just wait and see and love her and pray and never never never lose hope.
After brooding over all the thoughts in my head, I've finally decided to blog. However, I am fully aware that probably my biggest fault is that I'm really bad at completing what I started, therefore, I have made it a family blog and Brian has been invited to also post.
For starters, some of my thoughts just today (that I will elaborate on in future blogs, to be sure):
1. I am worried about the development of my 4-month-old born with HIE (hypoxic ischemic encephalopathy...basically, she has brain damage due to oxygen deprivation at birth) and am having a hard time finding a balance between enjoying her NOW and wanting to fast forward to see what the future holds.
2. I am once again frustrated and confused by, yet eternally grateful for, the insurance companies. Again finding it hard to balance the emotions... Brian helped me realize that money is counted in how many copays we get out of it...this is sad (and sort of funny), but this is reality for us right now.
3. How do I get my baby to sleep all night in her own bed? Am I doing it wrong or is she just not ready yet?
4. When can I find time to do all these crafts that I'm finding via this blog's link parties? (this is what I do while nursing, I scour these ladies' craft blogs and dream about all the fun things I will make someday...and by make, I mean start, but probably not finish)
5. With that (if I'm lucky) 2-3 hours a day that I get all to myself, how do I get some "me" time, but not feel guilty for NOT cleaning the kitchen, mopping the floors, doing laundry, scrubbing toilets, etc etc etc. I'm sure Brian thinks I'm a big slacker, but Sadie seems to hate the baby carrier for long periods of time, so I'm usually sitting nursing or bouncing her in her bouncy chair...both of which require me to have everything within arm's reach.
And with that, I've completed my very first blog post...I'm sure I'll get better at it and find catchy witticisms and silly stories to share with my readers in the months to come. Stay tuned!! Question of the day... Readers, help me out by leaving a comment below: What is the best way I can balance that tiny bit of free time I get between what I want to do and what I have to do? How do you do it? (baby wearing doesn't count, as I explained above that she hates that right now)