Ready For The May Flowers

Well, lots of news to report. First off, Mia has another bladder infection and is on antibiotics again for 10 days. The good news is we caught it early...before she got a fever, so she's doing just fine. We wouldn't have known except they ran the urine culture again on her. The other good news is that she can still go through with surgery because it is only a bladder infection. The chance of infection after surgery is just a tiny bit more, but she'll be on her antibiotics so she should be fine.

We also weighed her yesterday and she's now 12 pounds 2 ounces! Praise God, that is awesome! She continues to eat pretty well and yesterday she got a new vegetable...squash, which she really liked.

Recently though she's having more vomiting issues and last night she threw up quite a bit after her antibiotic, so we're not really sure what's going on with her tummy, but pray that she'll keep her food down and we'll figure that out.

Specific prayers for us tomorrow and the coming days:

1. Pray for the surgeons (there will be a neurosurgeon to take off the plates and there will be a plastic surgeon to reconstruct it properly). Pray that they are well rested and do an excellent job. Pray that she won't have to go through this again, pray for complete success with the first operation.

2. Pray for recovery. We expect there to be swelling and she won't be able to see for a few days because her eyes will be swollen shut. Yet we serve a God much bigger than that and pray that her swelling would be minimal, if not at all. Pray that she would recover very quickly. And pray for her pain.

3. Pray for her brain and eyes. The surgery is so close to those, pray that there would be no damage. In fact, they have to detach her eyes from the skull (at least I think they are attached there...I could be wrong...regardless they have to detach her eyes from whatever they are attached to) and we asked them how they reattach them and they said they didn't, that the eye muscles know how to reattach themselves in the appropriate spots. So pray for that also, but isn't that awesome that God created us in a way that our eye muscles know how to reattach! I'm more and more amazed at the detail of the human body.

4. Pray for wisdom with all the people taking care of Mia, that they would respond appropriately to her needs.

5. Pray that she wouldn't get an infection after surgery. And pray that her bladder infection would go away completely and not come back.

We'll try to update this as soon as we can after surgery. Her scheduled surgery time is 7:30am and they told us it goes about 6 hours. It humbles me to look at the map and see people all over the world praying for Mia, thank you. God continues to be so good to Mia and we are grateful.

I'll Sing You A Song

We were hoping to have heard back from our pediatrician regarding Mia's urine culture, but it wasn't ready yet...they said it should be in tomorrow, so we'll update you on that when we get it. Otherwise we are doing well...no other news to report. Thank you for being such wonderful prayer warriors, God sure is good!

I'm A Little Cowgirl

Mia's Grandma Cheri got her this cute dress when she was in Texas last week. It's still a little big, but she'll grow into it perfectly for summer.

Mia got weighed today and she is now 11 pounds 14 ounces...so close to 12 pounds! She continues to eat pretty well and she got her second dose of sweet potatoes and didn't mind them at all...which is great!

We also had to get another urine sample done today because the one from Monday had a different bacteria growing in it...but not enough to be super concerned, so they wanted to run another sample today just to make sure, we should know by Monday, so pray that it would come back clear. While we were waiting at the pediatrician's office I put Mia on her tummy...which she doesn't like at all...and she rolled over to her back today! I did it one more time just to make sure and she did it again...it's a bit of a workout, but that was a new thing for her, which is very exciting!

Brad is also feeling better, so we are pretty sure it was food poisoning. :( We're just glad he's better.

Sweet Potatoes

This morning Mia had her second try at sweet potatoes and I think she liked it! She kept most of it down...we probably had 1/3 of a small jar along with her bottle. We'll try it again tomorrow and see what she thinks again.

She's doing well. I forgot to mention that they are also going to put a helmet on her sometime after her surgery to fix the flat/misshapen back side of her head. We'll know more about that after surgery, but we are glad because we want her to have a nice round baby head. :)

Pray for Brad though, he got sick last night...we think it might have been food poisoning...something he ate. Pray that it isn't the flu and that Mia and I don't get sick too. We are being extra cautious because we are so close to the surgery date. Until our next post...

When The Smog Lifts...UCLA

We're back home from our trip to LA today. We got up bright and early to make it there by 9am...we left here at 6:15am! Mia slept most of the way and traffic wasn't too too bad...we ended up getting there right on time.

Our first appointment was with the doctor doing her cranial surgery. He went over the whole process again and even though we are nervous, we know that this is what she needs. Anytime you do surgery close to the brain there's always a chance of damage...and also with her eyes...so our prayer is that there would be no damage with her surgery.

We left there and went downstairs to the lab where Mia got poked one more time and Lisa got poked. Brad went over to admissions while Lisa was waiting to get poked and did some pre-admissions stuff. The good news is that we might not need to be at the hospital at 5:30am since we turned in our admissions stuff early...we'll find out the day before what time we really need to arrive.

After that we walked into Westwood (an area with shops and restaurants next to the hospital) and had lunch at our favorite restaurant (The Corner Bakery)...Lisa needed to eat well because after that we were going to get her blood drawn. So, we headed over to the blood bank and they checked us in and got everything ready to go...and then they poked Lisa again. She was very happy it was her and not Mia. :)

So after they got her blood, we took the shuttle back to the hospital and got ready to go. We were leaving LA at about 3pm, which was perfect for avoiding traffic. So it looks like everything is set for her surgery next week and now it's just a matter of waiting. Thank you for praying so far in advance for everything, it means so much to us! We are grateful that so many of you pray for our little girl, she's going to have quite a story to share some day!

Snooky Great pictures

I just saved a bunch of money on my car insurance!

"Bring on the waterpark!"

I'm Stuffed!

"I just swallowed a bug!"

Getting Bigger

I was so excited to weigh Mia again today because she's been doing pretty good with her feedings and I just wanted to know. So this morning she weighed 11 pounds 12 ounces! She's getting bigger, thank you Lord!

Pre-Op Stuff

Today we did a bunch of pre-op stuff with Mia. We went to see her pediatrician where they collected a urine sample to make sure she is finished with her bladder infection. We'll find out in 48 hours about that. We also went and had her blood work done at Mercy Southwest. Unfortunately she had to get poked twice because they didn't get enough blood the first time around...she was an unhappy baby, but right after I put her in her car seat and she calmed down immediately. It was like she knew that she was going away from that horrible place and they weren't going to poke her anymore...her car seat was a safety zone for her. Pray that they are able to get her lab work done with the blood they drew and pray that it is normal. Pray also for a clear/normal urine analysis.

Pray for us on Wednesday also because we'll be going to UCLA for a long day...we need to be there really early, 9am, so we are planning on leaving Bako-land super early...so pray for travel and that we are able to accomplish all we need to do on Wednesday. We'll keep you updated.

Is It Summer Yet?

Check out my cool hat and new sunglasses!

A Baby Scale

I think a baby scale is the best invention ever for moms who are concerned about weight gain. I don't know what took us so long to get one in the first place...needless to say, I bought one and it arrived Tuesday (the same day she got weighed at the pediatrician's office)...so I weighed her also just to see how accurate it was going to be...and it was pretty close! So I promised Brad I wouldn't go overboard and weigh her every day/moment because I know that baby weight fluctuates and scales are not exact, but I decided to start weighing her twice a week just to see what was happening...and today was the day! I was very excited because she's been eating so well and seems to tolerate the 24 cal feedings just fine...so I plopped her on the scale this morning and she's 11 pounds 9 ounces! Woohoo!!! She's gaining weight. Now I know that it could be + or - an ounce or so, but I was just very encouraged that she's on the positive trend...that's what we want.

Today is also her last day of antibiotics, so pray that her infection is gone and that she continues to feed well. We are planning on getting blood work/urine test done on Monday, so pray that it will all be normal. And pray that she stays healthy before her next surgery...which is in 13 days!

Mia Pictures

I get my blue eyes from my mommy.

This is when I had my fever and I wasn't feeling well.

I like to grab mommy's hair and hang on when we walk around.

Yesterday Mia ate over 600 cc's! It's been a long time since we've hit that number (we've been averaging in the mid 500's to low 500's), so we were very excited. She's been doing so much better with her feedings...even in the last day. We know it's because of all those prayers, so thank you for praying! Enjoy the pictures!

By the way, Mia said her first word a few days ago...she said "cookie". Now we know it really wasn't her first word, but rather just the babbling she strung together sounded like cookie...we thought it was pretty funny though. Maybe she wants cookies instead of formula???

Taxes or Shots...either way no fun!

We had a doctor visit today for Mia and she got her 6 month shots! She has gained some weight over the past two weeks, about 8 ounces. She now weighs 11 pounds 4 1/2 ounces. We are going to try her on 24 calorie formula again and see how she tolerates it this time. Overall though, her pediatrician thought she looked really good considering everything she's been through. She gave me a prescription for some cream to open her fused labia (remember they couldn't put a catheter in her vagina for the last dye test)...so hopefully that will do the trick. She's also been feeling a lot better since she's gotten her antibiotics. Please pray that she'll heal completely and that her next blood draw will be normal. Please also pray that she'll tolerate 24 calorie feedings.

Doing Better

Mia is doing much better now that she's been on antibiotics for a few days. Her fever is completely gone. Of course she doesn't like her antibiotics...who would? We'll be giving those to her until Friday. Tomorrow we go to the pediatrician and she gets weighed, so please pray for weight gain and she'll also be getting her 6 month shots, unless the doctor says to wait, so pray for that also. Please also continue to pray for her feeding as she's supposed to be drinking a lot more with her antibiotics and just in general.

A Tough Day

Yesterday at 4pm Mia started another fever and we gave her a bit of tylenol and that helped, but at 11pm she had a full blown fever (103.6). After some more tylenol and sponging with cool water her temperature came down, but at 4am she awoke with another temperature of 104. We gave her some more tylenol and did some more sponging and decided to take her to urgent care today because her fever kept returning. They did some x-rays and took some blood, which the nurse was fabulous drawing blood...this is the best experience we have had yet in that area! Thank you God! And they looked at her urine and came back and said she has a bladder infection. So they gave her a shot of antibiotics and she'll have oral antibiotics for another 7 days. Pray that she heals quickly, it probably doesn't help that she is not taking in a super lot of fluids, so pray for her fluid intake also.

A Surgery Date

We have a date set for Mia's skull surgery. It will be May 1st. I know that seems kind of sudden, especially since they didn't have anything available until the end of May, but the timing of this is actually much better for Mia. There is a lot to take care of before then, so please pray for the following:

1. Coordinating pre-op appointments and getting pre-surgery blood work done (remember Mia does not like getting poked and is hard to draw blood from.)

2. Finding a time for Lisa to get down to LA to donate blood for Mia's surgery (and that her blood would be acceptable...we think it needs to be CMV negative, but aren't positive).

3. Mia's health, that she wouldn't get sick prior to surgery.

4. Mia's feedings...she still continues to struggle and threw up again last night.

5. And just that God would be preparing everything even now as we wait for that day and the days prior/after...for her healing...and for things we don't even know to pray for now.

We'll keep you posted as we continue to learn more.

More On Feeding

Mia continues to not eat so well. Will you please pray that she would have an increased appetite. Brad and I are thinking we might need to go back to feeding her every 3 hours in the night because she's just not getting enough food in during the day. Her fever is gone, which we are thankful for, but she's had some vomiting episodes the last couple of days. So pray for her tummy also, we're not exactly sure what is going on there.

Feeding

I guess feeding will always be a struggle for Mia. Just when I think we don't need to worry about feeding it pokes back at us again. I am super concerned because she hasn't gained weight. We tried her on the 24 calorie formula, but she almost completely stopped eating, so I made the executive decision to go back to 22 calorie formula. Of course this could all be in connection to her synagis shot because she had a slight fever yesterday and wasn't feeling well. So pray for wisdom on our part and feeding on her part. Maybe in a couple of days I will try her again on 24 calorie formula and see if she tolerates it better then. And just pray that she feels completely better now because it is no fun not feeling well.

What A Day!

We had quite a long day at UCLA today. We got there for our 10:30 appointment with Mia's cardiologist. That went well and she's looking great as far as he is concerned. The sad news is that Mia was weighed today and she hasn't gained weight since the surgery 3 weeks ago. As a result we are going to up her formula to 24 calorie and try her on some solid foods to see if that will make a difference. So please pray for her feeding and weight gain. It's not that she gets tired when she feeds, she just doesn't want to take anymore. Pray that her appetite would increase and that she would tolerate 24 calorie formula.

We then went to see the craniofacial team. The CT scan Mia had a few weeks ago showed them that one of her sutures in front (the metopic suture) has fused early. It's causing her forehead to be pointy. They definitely want to do surgery on this and they want it to be her next surgery. The ideal time to do this surgery is from 3-6 months of age. More on the surgery in a bit... They also told us that the radiologist looking at her CT scan showed that she only has 1 front tooth. Because of this and the fact that her eyes are close set they want to run a different genetic test on her. Again our prayer is that it would be normal. We did talk with an orthodontist who told us she has seen children with 1 front baby tooth who end up with 2 front adult teeth...so pray that is what happens with Mia.

We met with the doctor who will do the actual surgery on Mia. It is quite a process and a bit unnerving to think about it. They will do a zig zag incision behind her hairline to get to the skull. That way when her hair grows in you won't see the incision. They will then remove the two front plates...yes, literally take them off of her head and set them aside. There is a long rectangular plate that runs across your eyebrows and they'll then reshape this plate. They will then replace the two plates in the proper place on her head. They have done this enough to know they need to over correct the adjustment because the skull has a tendency to want to go back to its original shape. So at first she might look extremely flat headed in front, but it will eventually work itself into the proper shape. As far as recovery, they said that they'll just wrap the head for a couple of days and that she won't need to wear any type of helmet...which is amazing to us. She'll be really swollen they said and she'll need to be in the PICU for a couple of days and then on the floor for a couple of more days. 4 days total and then she'll probably be able to come home. It's overwhelming to think of what's going to happen to her, so pray that everything would go well. Pray even now for her healing.

So when are they going to do it...they want to do it in about 4 weeks, but there is some scheduling conflicts they need to work through because their first available is the end of May. Anyway, pray for the scheduling and the right time for this to happen.

We are still waiting to hear from the intestinal doctor so we'll give you an update on that when we know more.

One last thing, Mia gets her last synagis shot tomorrow morning, pray that she would tolerate her feedings after that and do fine with the shot. (She tends to not eat well after having shots for a couple of days...)

April Showers Bring May Flowers

My boyfriend Jacob gave me these frog socks! Aren't they cute?!












Hey daddy, can I have some of your ice cream cone?!?!?!