Yesterday Brad and I went to LA with Mia for an appointment with CHLA (Children's Hospital Los Angeles) with the head of their division that deals with craniosynostosis. His opinion of Mia's head is that it might need to have another surgery to correct the skull shape. He doesn't think it is impeding the growth of her brain, but cosmetically we might want to get it fixed. He also said that maybe they could camouflage it later in life with some bone grafts, but because it is quite a difference that might not be feasible. He wouldn't want to do anything until her heart was fixed and we got another CT scan of her skull to give him more of an idea of what was going on with the plates. He also gave us a different helmet person to talk to who he thinks may possibly have a better idea of how to proceed with her head, so we've called her and are waiting to hear back from her. We will at least have her take a look at Mia's helmet and see what her thoughts are for reshaping her head. Because a child's head is still growing, but slowly, we are praying that the helmet will correct whatever is going on. And as you know, her head hasn't really grown in the last month, so please be praying that it would continue to grow and the helmet would work to correct the misshapen head. Pray for wisdom for us regarding future surgeries because of her past experience we are hesitant to go forward with this, but know that teasing can be a huge experience for children also. We think she looks beautiful, but not all others might hold to the same opinion.

We also had some measurements at her current helmet place done and her head is the same shape as last month, which follows along with no growth change either. Please keep that in prayer. Please also pray for her cardiac doctors on Thursday as they evaluate whether or not now is the right time to proceed with her heart surgery. Lots to pray for, we'll keep you updated as we learn more.

More Fair Pictures

Here are some more photos...we also ran into our friend Gil, there's a picture of Mia and Uncle Paul, Mommy, and Gil. And another photo of Mia eating fair food...well, it's not a deep fried twinkie, but she likes her green beans just fine. :)

The Fair

Today we went to the fair again and had a lot of fun. Mia saw an elephant, horses, goats, pigs, chicks, bunnies, cows...oh my...and of course those beautiful Clydesdale horses again. It was a lot of fun and she really liked looking at everything, here are a few pictures! Enjoy!

Fat as a CindyCat!

We've been joking for a long time how our cat Cindy is bigger than Mia, but when I weighed Mia today, she's now bigger than the cat! She weighed 15 pounds 2 ounces, which is amazing because the last time I weighed her she was only 14 pounds 12 ounces...I had to put her on the scale 3 times to make sure that I was seeing the numbers correctly. She hasn't been eating her formula very well lately, but I guess she's getting enough calories from her solids and the oil I put in them. We're very thankful because the more weight she gains the easier heart surgery will be and also we just want to see her grow...maybe even get back on the growth curve. Plus her head hasn't really grown in a month, so please be praying for that.

Mia's also getting some top teeth...we're not really sure what it will be like because the doctors told us awhile ago that she has only one central front tooth, we'd like to pray that isn't true and they are mistaken, we know that God can make her teeth right, but we are ok regardless of the outcome. So we'll see in the next few weeks what we get.

Later today we're going back to the fair, so we'll post some pictures of that!

Yesterday we went to LA so Mia could have another Echo done on her heart and then we had an appointment with the cardiologist. It's been a couple of months since we've done the echo so he wanted to see how her heart and the PA band were doing. He said that the job of the PA band is to restrict the flow of blood to the longs, as a result the heart has to work harder than a normal baby's heart, not to mention it has a hole where the blood mixes so that also makes it work harder. What they find is that the heart tends to develop thicker because it is a muscle and the muscle is working harder. It's not ideal, but instead of doing an immediate surgery, it gives the baby a chance to grow and get bigger. In light of that, he said that Mia's thickening is moderate on a scale of mild to severe and that maybe it's time to do her heart surgery instead of the intestinal surgeries. It is not a definite, but the doctors meet collectively once a week and so next week Thursday they are going to decide if that's the way to best proceed with her surgeries. They did say that after the surgery the thickening would go down and the heart would return to "normal" because it wouldn't be working as hard. The concern is to not let the thickening go on for too long. So please pray for wisdom on the part of the doctors and for us because we know that God is in control and we trust His plan for Mia, but heart surgery is still very scary for us. But we want what is best for our little girl.

The Fair

Last night we took Mia to the fair for the first time. When we walked in the gate there were some huge Clydesdale horses leaving and she got to see them real close, she was in awe of the huge horses. And then we went and looked at all the games and lights, but we didn't get to see the animals. We were ok with that though because Mia's teacher Miss Carmen told me that they do a fair at their school and Mia was welcome to come. So today I took Mia to see the animals there and she got to pet a Shetland Pony and a Goat and a Bunny. But I didn't get any pictures because Daddy wasn't there...so we made an executive decision...we're going back to the fair on Saturday to see the animals and get pictures...and we'll do it in the day when she isn't tired. :)

Mia got weighed today and she's now 14 pounds 12 ounces. I look at the clothes she fits into now and remember how when she was in the hospital the premee clothes were too big for her, she's definitely grown...at her own pace, but she's getting there.

So we are no longer sleeping through the night. :( She's back to feeding once a night again because she refuses to eat more during the day. I don't know if any of you struggled with this with your babies, but it has got to be the hardest thing I deal with every day. I've even tried giving her more solids, which she likes, but it still isn't enough to make it through the night. We have an appt with her pediatrician right after her first bday so I'll ask her what her thoughts are...right now though, she's gaining that weight by the grace of God so we are thankful for that.

Mia loves Elmo. This is a very new thing, her Nana had got this toy cell phone that says "Elmo's World" and "Thanks for Calling", etc. when you play with it. One day I was cleaning bottles in the kitchen and decided to let her watch a bit of Sesame Street because she'll roll on her tummy and it's good strengthening for her arms and Elmo came on the TV...she got so excited and was mesmerized. Later, I realized when we were reading a book of hers it had Elmo in it and when she saw him she started to grin...it's so funny how they can pick up on things so easily. She'll probably get Elmo on her first bday cake.

Tonight we are going to the fair with Mia, so we'll post some pictures tomorrow on that new experience!

Sleep, Blessed Sleep

Mia got weighed today and she is now 14 pounds 11 ounces. She continues to eat her solids real well and I continue to put oil in everything...trying to give her as many calories as possible.

Now I kind of didn't want to write about the sleeping part yet because I don't know if it's a sure thing or not, but for the last THREE nights in a row (yes three...) Mia has slept through the night completely, no 1 am bottle feedings...we've put her down between 7 and 8 and she wakes up around 6. I know I asked y'all to pray about the night feedings and I feel like this is such an immediate answer to prayer. And we are so thankful, it has been so nice to not feed her. And we would love for God to grace us out and continue to let her sleep through the night, so that will be our prayer. As long as she keeps on eating well, I'd love for her to keep sleeping through the night!

Please also pray for her developmental milestones. We'd love to see her crawl soon and walk there after, so please pray specifically for those two things. We know that if it is God's will she'll be able to do those things, we just need to be patient and wait on His timing. Pray for patience on our parts...especially mine!

Today was a lot of firsts for Mia. She had her first taste of meat today, chicken...out of a baby food jar and it was pretty gross, even texture-wise, but she ate it like it was good. And then she had some cold bananas, apples, and pears...she's never had her food cold, just room temperature or warmed. I think she really liked the cold food, it was a new feeling in her mouth.

Later she was having a bottle and didn't want anymore of it, but I didn't think she had enough, so her Grandma Cheri and I helped her drink some more out of a cup...not a sippee cup, but a regular cup and she liked it. I guess she's becoming a big little girl. :)

Mia Pictures

A Surgery Date

So they've given us a surgery date, Monday October 27th. We won't know until the Friday before exactly what time her surgery is. Please be praying now that everything would go smoothly and there wouldn't be any complications, thank you! We know God is in control, but we are still so grateful for all that are praying.

Mia also got weighed today and she is now 14 pounds 10 ounces. Ever since her antibiotics she's been getting up twice in the night to eat, so pray that she'd get enough during the day to make it through most of the night...once in the night seemed doable, but now twice is becoming a lot. :)

Mia keeps on doing really well. She's on her tummy alot, pushing up on her arms, which is only helping her get more strength. I feel like she really wants to crawl, she's just not there yet. We'll just keep on working on it though and wait for God's timing for crawling.

Mia keeps on eating "real" food well. This morning we tried pumpkin for the first time. Straight from the can...thank you Libby's. I put a bit of cinnamon in it because it was kind of bland and then of course the oil, we don't eat any food without extra oil added to it. She gobbled the pumpkin up. Our last feeding therapy our goal was to have her eat two meals a day of 2 ounces each and we are finally there. In fact, at her evening meal of avocado, rice cereal, formula, and oil...she finished that up and still wanted more, so she got peaches after that. And I would say it was about 3 ounces. I think we are transitioning to real food as we get closer to being a year old. I still want her to get as much formula as she'll take because I know that is good for her, but if she wants food on top of that, then great.

Please pray for us tomorrow as we'll be learning when her next surgery is. It makes us anxious because of the last surgery, but we continue to trust in God and know that He'll continue to take care of her through the next surgeries. Pray for right timing in the scheduling of that surgery.

11 Months

It's hard to believe, but Mia is 11 months today. She's definitely grown and changed quite a bit in those 11 months. She is now 14 1/2 pounds and still 27 inches. She absolutely loves eating food with a spoon. I can feed her anything these days, in fact, last night she had avocado, formula, rice cereal, and oil mixed together...I tasted it before I gave it to her and I thought it was gross, but she ate it like it was yum yum. Which is great!

We should know on Monday when her next surgery will be, so we'll keep you posted on that.

She's been really improving the use of her left hand and now she'll even reach for an object with both hands, which is awesome. She can also hold things in her left hand now for a short period of time. Thank you God!!!

Mia finally finished her antibiotic today, yay! One of her doses is at 1am, so I am very excited not to have to set the alarm tonight. Pray that whatever bug she had is gone.

Mia is back to 14 pounds 7 ounces, she dropped a few ounces being sick and now we are back. Pray that she'll continue to put on weight appropriately, she's a slow gainer as it is. And please continue to pray for her head growth and shape.

Mia continues to do really well, she is feeling much better...like her normal little self. She was posing for the camera this morning, so here are some more photos! Did we ever tell you how blonde she is?!?! Check out her eyelashes...Oh and here's a photo of her and the vacuum...which she thinks is the next best thing to sliced bread.

Mia continues to do better each day. We haven't heard about her cultures yet, maybe tomorrow...but her fever is gone and she seems more like herself. :) Daddy noticed how much she was pushing up on her arms today, which is great! Here are some photos of the cutie pie!

So I spoke with Mia's neurologist today and he thinks that she had an actual seizure and he doesn't want to classify it as a febrile seizure, even though she had a fever at the time. Anyway, to be safe we are going to up her doze of seizure medicine over the next five days, so pray that she would tolerate the increased dosage. Some of the side effects are sleepiness. The big thing is for her to manage the seizures and not have them, he doesn't want to put her on other medicines because what she currently takes is pretty safe for babies, so pray that this would be the right dose for her.

She's doing much better, her fever has gone away completely so far and she's back to wearing her helmet, she's not to wear it when she has a fever because the helmet only makes her head hotter. Thanks for all the notes and all the prayers!!!

Mia is doing better today. She slept most of yesterday and last night, she had a mild fever this morning and I gave her tylenol then, but since her temperature has been normal, which makes me think that the antibiotics are working. We went to her pediatrician today and she got checked over and she looked really good there, they'll want to do some follow-up urine samples after she is finished with her antibiotics. The doctor thought that what she had was a febrile seizure, which can happen in infants if they have a temperature. She has now had a history of seizures so this is probably what happened, we're waiting to hear from her neurologist to see if he wants to have any tests run, but she hasn't had any incidents since last Tuesday evening, so praise God for that! Will keep you posted on other updates we hear about.

A Long Night

Last night we ended up taking Mia to the ER via ambulance. She wasn't feeling well yesterday, as I mentioned in the blog I wrote last night...she had a slight fever and didn't nap well on our trip to LA, so I put her to bed around 6:45. Then I came and wrote our blog. Around 8pm I decided to go in and check on her since I had given her tylenol around 3pm and wanted to make sure her temperature was still ok. When I went into her room I noticed that she was having a hard time breathing and I thought she just had stuff in her nose (because that's how she was for Brad the night before), but when I picked up I noticed that she was shaking all over and having a real hard time breathing and there was some stuff coming out of her mouth (kind of foam like)...which immediately made me think she was having a mild seizure. So I got Brad and he called 911 from our land line (which we purposefully got for this exact reason) and they said just to keep her calm until they got there...there response time was great, 5 minutes and by the time they got there her breathing had started to return to normal. And her color had come back, she was super pale white (I know she's really white, but she had no color when I found her). So she seemed to have come out of whatever it was and they asked us what we wanted to do and we said we wanted to take her in to get checked out just to be on the safe side, so they put her in her carseat and strapped that to the gurney and into the ambulance we went to the hospital. The lights were on bright and she was enjoying looking at them as we went there...beings a new experience and all. Anyway, they checked her in and got her vitals, her heart rate was at 180, which is really high for our little munchkin and her blood oxygen sats were around 89, which is on the lower side for our little girl (she's usually 94-100). They got her temperature and it was only 100.8, so that was good. The doctor decided to take some chest x-rays because of her heart condition and she also wanted blood work and a urine sample (both not pleasant things for Mia). Needless to say, it wasn't a fun night for her and the results came back and it looks like she might have a slight respiratory infection (or it could be scarring from her operation, they are not sure at this point) and her urine sample wasn't clean, but it wasn't a full blown UTI. They weren't able to get enough blood to run some of their tests, but the blood they did get to run cultures on wouldn't be back for another 24 hours or so, so they said to be safe they were going to give her an antibiotic shot and then put her on antibiotics for the week and we'll follow-up with our regular doctor in a day or so and know more about the blood cultures then. We got home early this morning and put her to bed, around 4am I checked on her to make sure she was ok, and she was and then this morning she got woken up for her medicine and more tylenol and she's been sleeping since. So pray for our little girl, it's no fun being sick.

Progress

Today I took Mia to LA with her Grandma Cheri. We had an appointment with her intestinal surgeon to decide what would be the best next thing for Mia. It was a really good visit. He wants to schedule her anal opening surgery sometime in the near future (whatever works best for both of us). He was looking at the dye studies she had done and he'd like to do one more again, but this time when she is out in the operating room prior to the surgery. He thinks that maybe they didn't use enough pressure when they put the dye in her intestine and that's why they couldn't see clearly where it attaches. He also thinks that maybe there was some mucus in her intestine and that's why the dye kind of stops when it gets near the vagina. He is still very hopeful that her intestine is lower down than what the picture suggested, but won't know for certain until the day of the surgery. So please pray for scheduling of that surgery and that everything would go smoothly. Pray also that after all is done that she'll have control over her bowel movements because that is still an uncertainty at this point.

Our second stop was at the helmet place where they measured Mia and there was no change from her appointment a few weeks ago, so pray that her brain would keep growing and that we'd have improvements wearing the helmet. The neurologist said her brain would probably grow at a slower rate, so pray that brain growth would keep up like a normal baby.

After that we headed home, but we noticed Mia seemed slightly hot all morning, like she had a low grade fever, so we stopped off at Rite-Aid and picked up some tylenol for her (note to self, bring tylenol). We have to be really cautious with fevers because sometimes they can cause seizures in babies, so we really want to minimize that risk with her. Needless to say, she was a normal temp when we got home, pray that she wouldn't have anymore fever and that there isn't something more serious underlying this. It could possibly even be a teething thing, we just aren't sure at this point, but are thankful her temp is normal as of now.

Humbled

Last night I was "surfing" the internet and decided to type in Mia Sturm and see what I got. There were a few things about our very own Mia Sturm and then I saw a link to another Mia Sturm and so I decided to check it out. She's 4 months old and lives in California also, which I thought was so neat, another Mia Sturm! It's such a good name. Anyway, I left a note on the parents' blog and was so humbled by their response. They don't even know our baby girl, aside from reading our blog now and they are going to pray for her. I know that is how the body of believers is supposed to work, but I'm constantly humbled when it happens over and over again for our daughter. There are so many of you who faithfully read our blog and pray for our daughter and you've never met us before, but you've heard about us from someone else. Again, it is so humbling and awesome all at the same time. We are so grateful for that...I know I say it alot, but thank you for praying.

We were at church on Sunday and talking with one of our former pastors and he said, "quite a journey y'all have been on" and Brad replied, "just glad we're not driving." And that is so true, we are so thankful that God is in control and that He continues to say yes to healing our daughter. People ask us, "how do you do it?" and we don't really think about that, when you have a child with special needs (we are by far not alone in this), you just do it and what gets us through each day is knowing that we're not in control and that God will give us the strength each day to do it. What an awesome God!