Bye Bye 2008!

I can't believe it is the end of 2008? Where did it go? Well, much of it was spent driving to LA for doctor visits and doing therapy at home in Bakersfield. It's been quite a year. We're looking forward to a more relaxed 2009...less doctor visits, that's on my wish list! What can we expect for 2009? Mia still has at least 2 more surgeries to go, both intestinal...so probably in March/April we'll do the first one of those and then over the summer we'll finish up. We continue to pray that the helmet will help the front of her head straigten out so that she doesn't need another skull surgery...she probably has another 10 months or so of wearing the helmet. And of course we continue to pray for developmental milestones, like crawling and walking and feeding herself...those will come with time and I've learned to be very patient and not compare her to others...or to the book for that matter, her life hasn't been a typical baby life. :) We are ending 2008 on a very positive note, Mia has now reached 17 pounds and we continue to be grateful that she is putting on weight. God has truly been gracious with our little girl. And we continue to be so thankful to all who pray for her, she is quite a loved little girl! Who can resist those chubby cheeks and big smiles?? We sure can't.

Family

We've been so busy with family this past week that I haven't written a post in so long. So long for me anyway! We were enjoying time with my brothers and their families...lots of nieces and nephews to play with Mia. At times there was so much going on she wasn't sure what to make of it, but she was very intrigued by all these other little people. :) And then we spent the other half of the time with Brad's family and his sister who was here from Portland, Aunt Goose. Needless to say, we've been busy.

Christmas was really nice. She got lots of gifts that Mommy and Daddy had to struggle opening. ;) Her biggest gift was a new wagon...it's quite the wagon too, it comes with seat backs and seat belts and cup holders...the only thing lacking is a GPS. One of her favorite gifts (chatter Elmo) came from her boyfriend and his brother. Sometimes Mommy puts him away because he chatters too much. :)

She's been eating really well and I weighed her today, she's gained the weight she lost and is now at 16 pounds 15 ounces, thank you Lord! And sleep is still a struggle, but it has been better the last two nights...we've only had to get up for one late night feeding and she's went right back to sleep when she's finished, so there is definitely improvement there. We'll keep praying for good rest.

So sleep is getting better...but she's still not gaining weight, she's down to 16 pounds 8 ounces, so pray for wisdom on our part and insight into what's happening. She's never been a big eater and she isn't eating any differently, so we're not really sure what it's about.

She has started rolling on her tummy again so that tells us that she is feeling better and her chest is healing! We are thankful for that.

Right now she is on my lap pulling my hands away from the keyboard because she does not want me typing. Very cute. :)

Please pray for Mia, she has started to lose weight, and I'm not exactly sure why...she's down to 16 pounds 10 ounces. And she's not sleeping well at all anymore, so please pray for us as we try to figure out what's going on!

We were supposed to take Mia to LA today for a helmet adjustment, but decided against it with all the weather going on...we noticed this morning that they were escorting cars over the grapevine and decided we didn't want to chance it and get stuck on the road somewhere with the baby...not a great idea, so we'll wait for another day to do that.

In the meantime, we weighed her this morning, she's now 16 pounds 13 ounces...maybe she'll be so fortunate as to gain the 5 pounds everyone else does over Christmas?? Probably not, but we are grateful that she continues to gain weight.

She is also on an antibiotic now because I emailed a picture of her incision to her doctor in LA on Monday and they didn't like the redness at the top along with the fact that there was a slight green tinge to it, so as a precautionary measure she's on an antibiotic for 10 days...she should be done just in time for Christmas. :) Since starting that on Monday her scar looks so much better and there isn't the green anymore and the red is going away too.

Sleep continues to be hit and miss, sometimes she does well and sometimes she doesn't, but I have noticed that she isn't so fussy anymore and I can get things done in the kitchen while she is playing in the living room, so that has been a nice change. :)

We continue to be grateful for progress each day and for all your prayers!!!

Mia is doing really well. We took her steri strips off her incision yesterday with this product called Detachal (spelling?). Anyway, it loosens the sticky stuff so it doesn't hurt and I am happy to say that Mia did not cry at all! There is a small red spot at the top of her incision we are watching to make sure it doesn't turn into an infection, but otherwise it looks great. We also felt a new tooth starting to come in today, so that might also be contributing to her fussiness. Some nights are better than others for sleeping, we continue to be patient and pray that we'll get into a better routine soon. Pray that she would eat better during the day, we continue to work on that.

Mia went to see her pediatrician today and she thought Mia looked great. Each day is a little better at home, but she still gets upset if we leave her alone for any amount of time. They decided to take her picture at the pediatrician's office and I thought ok, she likes her picture taken, but as soon as they got the camera out and took a picture she immediately started crying. But if I take a picture of her...or her grandparents do, she poses and smiles for the camera...

She got weighed there and is now 16 pounds 11 ounces...so she's doing great with gaining weight. Please pray for continued healing and that she'd return to her normal happy self soon. Pray also that she'd sleep better at night, we know it will just take time. :)

We are doing well and each day I feel like Mia gets a little bit better. This last surgery wasn't easy for her and we are finding that she's having a harder time sleeping. This might be because she wakes up uncomfortable or because she is still a bit traumatized from her hospital stay. Anyway, sometimes the only person that can console her is Mom...not even Dad, so pray that her sleeping would get better...it's almost like having a new baby at home again. :( And of course her tummy still isn't quite healed, but getting better, so pray for that and pray also for her eating, she's slowly getting there with her feedings...but she is pretty much refusing all solids still. :( The good news is that she has put on some of the weight she lost from the hospital stay, she dropped 9 ounces when we were there...down to 16 pounds 3 ounces when we came home, but now (1 week later) she is up to 16 pounds 6 ounces...so I feel like we are making good progress even if she isn't eating that well! I know it is just a matter of time...it takes time to heal, but it's no fun to watch her be uncomfortable...and we do give her Tylenol, but we try to make that a last alternative, if nothing else will console her. But we continue to be grateful how well her little body is healing.

The Baby Jesus

I haven't been blogging as much because I've been trying to get all our Christmas stuff up so we can enjoy it before Christmas gets here. Last year we didn't put anything up because we didn't come home from the hospital until December 20th...so this year, Brad put the tree up on the Monday we were home from the hospital. This is Mia's first Christmas Tree...she really liked the lights. Then I started going through all the Christmas stuff and she really enjoyed looked at the trees and Santas. Well, when I unpacked the nativity I was showing Mia all of the different characters/animals...and she wasn't super interested, until I showed her the baby Jesus and she immediately grabbed it and took it...we thought that was neat, maybe she knows!

Yesterday we went to LA for a couple of different things. It was time for Mia to get 3 small stitches out and they also wanted to check and see how she was doing. In the morning we noticed she had a hernia near her stoma, so we also got that checked out by a doctor. She didn't like getting her stitches out, but the doctors told us that her incision and stitches looked great. Next week Friday, I get to take off the steri-strips that cover the actual incision, myself. That probably won't be fun either!

After the stitch removal, a different doctor looked at her intestines and he thought they looked ok, we should just watch them for a couple of days and make sure it doesn't turn into something serious, so please pray that her tummy will start to feel better...I think it is because of all the new meds...that they aren't sitting well in her tummy...the good news is we got rid of some of them and in a couple of weeks she'll be back to only her seizure medicine and 1/4 of a baby aspirin a day.

Then they did an echo on her, where they used the ultrasound machine to look at her heart...and they said that everything looks PERFECT! The surgery couldn't have gone better, Praise God!!! And her cardiologist doesn't want to see her for another 4 months! That's how good she is doing!

After that, a quick chest x-ray to make sure her lungs were ok, which they were, and a quick stop at the pharmacy...and we were back to Bakersfield. And if her tummy/intestines sort themselves out by themselves then I don't think we'll need to go back to LA until January...that's exciting!

Not a big deal!

I just got a text from Lisa that the doctor didn't think her hernia was anything serious, just to watch it and they limited the amount of new medication she is getting.
Praise the Lord! :-)

Hernia

Mommy discovered this morning that Mia has a very impressive hernia underneath her colostomy site. It's hard and very painful for Mia. This sheds some light on why she has been crying and restless at night, her tummy hurts! And we didn't know what the problem was because her colostomy bag was covering it up. Being a level headed father, I immediately freaked out. We called the pediatric surgeon at UCLA, and he said, "Is her skin red?" no. (We have an appointment at UCLA today for her surgery follow-up) "Well, then I'll take a look at her when you get here today." I was very relieved to hear that the surgeon wasn't nearly as panicked as I was. So, Grandpa Flash and Mommy are driving to UCLA as I write this. They are going to remove some surgery stitches and the GI surgeon is going to examine her hernia bulge. Would you lift Mia and her tummy up in prayer today? Thanks and God Bless! Brad

Tomorrow Mia gets another Synagis shot...please pray that there are no complications, especially since this is so soon after surgery, but the doctors feel like the benefits outweigh the risks...since her body's immune system is so low, they don't want to risk any infections. And please keep praying for a routine/sleep schedule...we know we'll get there...just a little bit of time.

Hospital Photos

Here are some photos of Mia post operation. She is doing well, but not sleeping well at home...so please pray that we'll get back to a schedule that works for her.

Home

We got discharged a little bit ago and will be traveling home soon. It is almost unreal how quickly we are leaving, but from past experience we know it is easier to heal at home. Praise God for going home!

Bakersfield????

Galen always says there are no accidents in the Christian life, and now I believe him! (Note: I did not disbelieve him before. :-) ). Baby Matthew and his parents in the room next to us are from Bakersfield! That is so exciting because I wanted to exchange contact information with them, so we could stay informed when he gets to go home. And now I learn that they live in the same town as we do. Very cool.
Is God awesome or what? Please pray for both Matthews and tell God a very big Thank You for Mia's amazing recovery! Thank You very much to all you praying people!

Mia is doing much better today. She only has one IV left and they are thinking about sending us home tomorrow. She still has some stuff in her lungs, so pray that it would go away completely soon. She will have quite a long recovery at home. She'll be at home away from germs for a couple months because her immune system is weekend. And she'll have to spend time regaining strength. Pray that all goes smoothly for the next couple of months.

On a different note, Mia got her first wagon ride today. They have wagons to pull the kids around in so they can get out of their rooms...she cried and cried when we put her in it, but then after we got going she loved every minute of it. She then cried when we stopped the wagon ride...she didnt want to go back in her room. We will be doing it again tomorrow!

We also saw Matthew Lawrence and he is doing alot better, please continue to keep him and his family in prayer. And the baby Matthew next door is also doing better. Please keep them in prayer also.

Mia got a lot of IV's and wires removed today. Her lungs are still full of something, so please pray that would clear up soon. The concern is that it might turn into pneumonia if it doesn't clear up. She also is not eating well, so pray for that also. There is talk about sending us home soon, but we definitely need her lungs to be cleared up first.

Giving Thanks

After a long nap, and a bottle from momma, Mia is like a brand new baby. Except for that whole crying all the time thing. She is laughing and cooing, talking and playing with toys. I have to give thanks to the only one who has the power to heal her. Our LORD God, the I AM, Yahweh, the creator and sustainer of all life. Thank You!!!!!

Would you pray for the little boy in the room next to us? Matthew is 1 month old, and he is recovering from his 2nd heart surgery. His mother shared with me that he has holes in his heart and has a 50 percent chance. Will you join me in asking God to intervene in Matthew's life?

Uncomfortable

Mia had a restless night. Now that the anesthesia has totally worn off, she is uncomfortable and will softly whimper when she is awake. They have given her Tylenol, but anything stronger would not be in her best interest. A chest x-ray revealed some stuff in her lower left lung. So she needs to cough and breath deeply, and if she is sedated, she can't do that. If she would get worked up and cry loudly, that would help her lungs also. Pray that her lungs would be healed.

Mia got some pedialyte and formula tonight. She drank them both super fast, she was definitely hungry! We are being careful just to give her a couple ounces at a time to make sure she tolerates it. She seems to be doing well so far! We just continue to rejoice at how smoothly everything has gone...we know it is a God thing and want to always remember to give Him the glory for it.

Mia just got her breathing tube out! She is doing well, super tired, but happy to have the tube out of her mouth. Pray for continued gain of strength as she is really weak right now. Pray also for when we start food as that might be a bit of a challenge.

Chest Tubes out

About an hour ago, they pulled the 4 plastic drainage tubes out of Mia's chest. Lisa and I were there watching, and they gave Mia a sedative right before they did it, because it was painful. But she was fast asleep when they were done, and while she slept, we went to lunch. Now they are testing her for pulling out her breathing tube. The way they do that is the machine is not breathing for her, Mia is doing all the work. The respriatory therapist said Mia is doing a good job breathing, and they plan to pull out the breathing tube shortly. (1PM?) Thanks for praying! God is so good!

I just talked to Mia's nurse and she pretty much slept through the entire night. They had to give her some sedation only once. They think they are going to try to extubate (remove her breathing tube) this morning. Pray for timing and that everything would go smoothly...the worst scenario would to do this to early and then have to put the breathing tube back in. Pray for wisdom for those doing this.

We got to see Mia and she looks really well. She is a tiny bit puffy, but that should go down soon. She is still on the ventilator, but they plan on removing it tomorrow, so pray that the breathing tube comes out easily. After that she may try food, so pray for that also. She is looking real well though and we are encouraged.

We just talked with Mia's surgeon. Everything looks really great. He said they found another hole inside her heart that they patched with the same material from the original hole. There was another thing they fixed and I don't know the exact terminology, I just know it was fixed and it shouldn't cause her any problems later on. He said her valves were not leaking which is great, and so everything looks really well. God is good always and today He has said yes in fixing Mia's heart...thank you! The surgeon also said the bleeding has stopped and again, we are thankful.

We can see her in another hour and half...pray for a quick recovery and short hospital stay. We don't have enough words to praise God for what has happened today...we are so grateful and thankful for all who continually pray.

We just heard from the OR that they took her off the bypass 5 minutes ago and she is doing fine. Thank you Lord! There is a little bit of bleeding they are trying to control, we don't know if that is common or not, so please pray for that. They expect to sew her up in the next 30 minutes or so. We don't know when we will be able to see her yet. Please continue to pray for the final stages here and thank you for all of your prayers already. We are grateful.

We are still waiting to hear how the surgery is going...we do know she is on the bypass machine, but we haven't heard anything else yet. Thank you for praying.

We just talked to the OR nurse, they placed the arterial line at 8:30 and they just started her surgery at 9:45. Pray for her surgeon, that everything would go smoothly, pray that her body would tolerate the blood products, and pray for her time on the bypass machine that she would be on and off it quickly.

Please also keep Matthew Lawrence in your prayers, another kid from LBC. He had surgery a few weeks ago and there were complications. We just saw his mom and they might need to do another surgery, but don't want to so soon after his last. He is 5 and has intestinal problems.

We just let Mia go with the doctors to be prepped for surgery. She was doing great, they gave her an oral sedative before we left her and so she was real calm and relaxed and didn't cry when they took her. They said it would be about 3 hours of prep time and they would keep us informed.

Pray specifically for an arterial line, they won't do the surgery without one and she is real hard to get IV access as it is.

Pray also for no seizures after surgery because they said being on the bypass machine can result in seizures.

Just a quick update...it is 4 am and we can't sleep...not because we are worried, but because we don't want to miss the 4:30 alarm. We have to check in at the hospital @ 5am. Mia did well yesterday getting her blood drawn, they got it on the first poke. Thank you for praying and thank you God!

Right now she's sleeping real nice...I love to hear her breathe when she is sleeping...it is very peaceful. She got her last meal at 11pm and fed real well. Pray she isn't too hungry this morning before she gets put out. Will update more later when we know more.

Child Dedication

Today we dedicated Mia at church. It was such a sweet time for us. She got all dressed up for the occasion in a new dress with tights and shoes...that was the first time she's ever worn shoes! She didn't like them too much.

It was so nice to see so many people who have continually prayed for our little girl. Thank you so much!

Mia also got weighed today and she is definitely beefing up for Tuesday...she is now 16 pounds 10 ounces. :)

Some things to pray for tomorrow and Tuesday...tomorrow we go down to LA and she has to have her blood drawn one last time before surgery, pray that it would be quick and easy, that they would get it the first try.

Tuesday is her surgery and we don't have a time yet, but it will probably be like all other pediatric surgeries...in the morning, so I'm sure we'll have to check in around 6am and they'll end up taking her around 8am...we will try to update the blog as much as possible on Tuesday to keep y'all informed.

- Pray for the surgeon and team that everything would go smoothly without any complications.
- Pray for easy IV access, she's always a hard poke.
- Pray that there would be no surprises in surgery.
- Pray for wisdom on all of those in the room with her.
- Pray for an easy time on and off the bypass machine...pray that her heart would start when the time comes for it.


We are at peace and trust God completely through all of this. God has been so gracious to our little girl and we are thankful.

Today I went with my mom down to LA to give blood for Mia and everything went really well. We also ran into one of our other donors their (thank you Jeff!) and tomorrow another donor (thank you Stacy!) is going down. Please keep her in your prayers tomorrow and Brad and Grampa Flash on Saturday.

Nana was a huge blessing to us today...she stayed with Mia so she didn't have to make the trip to LA and so she was with her for 6 hours, thank you Nana! We were so grateful for that, it took a lot of stress off of me.

Some of you have asked about giving blood here...this blood we donated is not for credits, it's actual blood that she will get during her surgery, we've used blood bank blood for her in the past when we didn't have a choice, but since we knew this was happening, we really wanted it to come from family/friends...we trust the blood bank, but it's just nice to know whose blood she is getting sometimes. :) So if ever in the future, she needs more blood for a surgery and you are O negative...and are interested you can let us know...it was such a blessing to have Jeff and Stacy and Grandma Cheri (and her mama...but that's a given) be able to donate for her. Mia says thank you!!!

Mia continues to do well. Today she got weighed and is now 16 pounds 5 ounces! I think the extra calories from oil are really helping.

This coming Sunday we are going to dedicate Mia at church. It will be at the first service (8:45) at Laurelglen Bible Church if you are interested in coming.

Otherwise we are doing well, I am going with my mom to give blood tomorrow for Mia and Brad and Grampa Flash are going on Saturday to give plasma and platelets...we also have two friends who are going on Friday to give her blood, so pray for all of this that we'd have safe travel and everything would go smoothly.

I know the top of my head is cut off, but Mommy want to show y'all my two top nippers...yup, that's definitely two...so we're thanking God for those!

Mia is eating so much better...back to normal! Thank you for praying for her. And she did get weighed this morning and came in at 16 pounds 1 ounce, so we are grateful she didn't lose not eating yesterday.

I am feeling a little bit stuffy, so please pray for our health...that we wouldn't get sick...I think that the combination of not getting enough sleep and making sure everything is right before surgery is wearing on me a bit...maybe she'll sleep through the night and I'll get some good sleep??? It happens every now and then. :)

Home

We do always love coming home. One of these days we'll not have to go to LA as much and we will be grateful for that also.

Last night we drove down to our dear friends George and Lory and stayed with them (thank you thank you thank you!). That was real nice because they told us we had to be at the hospital at 6am...we didn't want to drive at 4am...what was even better was that prior to leaving Bako-land a gal from the hospital called and said, you don't need to get there at 6am...you'll just hang out for an hour and do nothing when she isn't scheduled until 7:30am for her CT scan...so you should just arrive at the hospital and go directly to radiology at 7am. What a blessing!!! Mia ended up sleeping really well in her borrowed pack-n-play from her boyfriend Jacob. (Thank you Jacob!) And at 6am I got her up to give her her seizure medicine and she fell back asleep until 6:45 when we left for the hospital. She did great waiting for the whole process to happen. Thank you for praying for that!

After some confusion about her CT scan, it was determined (unexpectedly to us) that she would actually need to be intubated (have a breathing tube) for the CT scan. This is because in addition to lying completely still, she would need to have her breath held for her also. This is because they need to measure the distance from her ribs to the blood vessels on her heart so that they don't accidentally damage them during surgery. Since a baby can't lie still and hold their breath they needed to sedate her and have the breathing machine hold her breath for her. Amazing what they can do with technology! She needed an IV first though and they did it while she was awake, but they got it on the second try, so we were very thankful for that. And then because of the breathing tube she had to have general anesthesia which takes a bit longer to wake up/recover from...so we ended up not finishing their until about 10:30. But she did really well and there were not any complications. Thank you God!

We left there to go and have a chest x-ray and an EKG...all of which were fairly simple and even though there was crying (because now she fears almost anyone who touches her...who wouldn't?), there wasn't hurting for those things. They still needed to get some blood from her to do a bood type check and so I made the mistake of asking them to call the heart surgeon's office and ask if this could be done prior to her surgery when she was out because they tried when she was out from the CT scan, but weren't able to draw any blood. They told me it needed to be done before the surgery so they could have the blood products ready to go the night before...(she's had how many surgeries already at UCLA and they still need to check her blood type????? That's what I was thinking...but apparently it is a legal requirement after a certain amount of time has lapsed since the last check...legalities can be so frustrating!) Well, they then told me at the lab that it would need to be a full blood draw and not just a heal stick or a finger prick...and that did not make us happy. I asked them why we couldn't have done this in Bakersfield when she got her blood drawn for her labs and they told me that the blood type check has to be done at the hospital you are having surgery at...again, legalities. They then said, by the way, we want to change Mia's surgery date to this next Thursday (6 days from now) because her surgeon wants to leave the Wednesday before Turkey Day. At first I didn't think it was a huge deal, but after Brad and I discussed it, I realized it was a big deal because we had already made arrangements with different people about donating blood products directly for Mia. And it would mean more time off of work for Brad...so Brad called them back and after some discussion, the heart surgeon apologized and said he didn't realize that we'd lined up donors for Mia and that he would do the surgery on the scheduled date of November 25th and he'd just have someone else look after her the next day. What a relief that was! But the whole time we are thinking, what is God's will and so I am so grateful that we prayed about it before they called us to apologize because I feel like that was a direct answer to prayer. And ultimately we know that regardless of what day the surgery is on, God will be there.

So, after all of that, we headed back to Bako-land...please pray for Mia, when they intubated her it has caused her throat to be a bit sore and she's had a hard time taking much food today, pray that it will heal quickly and she'll be drinking/eating a lot better tomorrow! And thank you for praying for today, overall it went really well.

Oh...I didn't mention about the blood type...we decided to wait to have Mia poked until the day before her surgery when we go down to LA, we just thought she had already been through too much and we didn't want her to have to be poked today...so pray that they are able to do that quickly when it happens!

Tomorrow we will be at UCLA. Mia will be getting some more pre-op stuff done. The big thing is a CT scan of her heart. They need to put her under anesthesia for this so she won't be able to eat anything in the morning. Pray that there are no complications with the anesthesia and that she tolerates not being able to eat for awhile. It is scheduled for 7:30, so hopefully we'll be done with that relatively quickly. They will also have to put an IV in her and I don't know if it will be before she is out or after. So pray that the IV would go in easily because that has always been difficult for her. She will also be having a chest x-ray and EKG, but those should be relatively simple. And I do believe she might have to get her heal poked, but am not certain on that yet.

Brad asked me why I hadn't told him Mia was half crawling...I just thought he knew. She's been pushing up on her arms and turning herself in a circle...so her arms are definitely getting the understanding of how crawling would work, we just need to get the legs going too...in time. :)

Please continue to pray for our health, we all want to stay healthy prior to her surgery...which is now 12 days away. We know that God is in control and our ultimate prayer is that His will be done, we're hoping health is a part of that!

Today we took Mia in to get her blood drawn and it went so well! Thank you God!!! We went to an outpatient lab by Mercy Hospital and Mike drew her blood. It took 1 poke and less than a minute to get her blood, it was amazing. We were so grateful...we will definitely be seeing Mike in the future...he was like an angel to us! So thank you all for praying...now the only thing left is pre-op stuff this Friday. Please pray that everything would go smoothly there also. Pray also for Mia's health...that she and all of us would stay healthy for her surgery. It still seems like a long ways away, but I know two weeks will pass in a flash.

Mia's October (now that its November)

 

To really appreciate this picture, you need to click on it to make it full size.

Sweet 16!

Mia has finally reached 16 pounds! Go Mia. I remember when she was stuck at 13 pounds for awhile and I thought is she ever going to get bigger and Brad had to keep telling me not to worry that she would get there and he's so right...she's getting there. She's almost too long for our scale now, I measured her the other day and she is real close to 29 inches...pretty soon we'll be switching car seats...I was hoping she might stay in her current seat til she's 20 pounds, but she'll be too long pretty soon.

Monday I have to take Mia to get her blood drawn in Bakersfield, so please pray for us. Pray that it would go quickly and easily...she's such a hard one to get blood from. This is pre-pre-op stuff. She needs this done before Friday because they are going to do a CT scan of her heart and they need to put her out for that, so they want to make sure her blood work is ok prior to that. They'll also be drawing blood on Friday, but I believe they'll be able to do it when she's under the anesthesia so that shouldn't be painful, but they will have to put an IV in her on Friday, so pray for that also. They'll also be doing a chest x-ray and an EKG on Friday, but those should be pretty painless.

Her helmet is fitting her really well, which is a blessing, so we'll just keep praying for head growth.

Mia did really well with her Synagis shot yesterday. She didn't get a fever and we were so thankful. She wore her helmet all last night and it looks to be fitting real well. This morning she got weighed and she's now 15 pounds 13 ounces...so we'll keep praying for more good growth because the bigger she is for surgery the better.

A New Helmet

Yesterday we went to LA to get Mia's new helmet. Since both of the grandmas were busy Grampa Flash volunteered to tag along...thank you Grampa! He drove us down there...we stopped at In & Out along the way...we had burgers and Mia had beef and carrots with oil...I think that's pretty similar to what we had. Our appointment was at 1:30 in Torrance and they said allow for an hour to adjust the helmet. Well, 1 hour turned into 2, but we definitely didn't want to go back anytime soon and so far so good...I've been checking her helmet every couple of hours to make sure there aren't any red spots and it seems to be fitting well. It's a little bigger and bulkier than the last one, but they wanted to make sure it would last her until she's 2 or so...they said insurance would definitely not go for a 3rd helmet (we still don't know about this one, but we continue to pray and be hopeful). They did think her head grew a smidgeon since she was last there...so please be praying that it would continue to grow and this helmet would reshape her head.

This morning Mia got her Synagis shot...it is a shot they give babies during cold/flu season to protect against RSV...any premie and baby with a heart/lung condition gets the shot...it's a once a month thing for the next 5-6 months...so pray that she wouldn't have any adverse reactions, she ended up doing fine with her last immunization, but she had a fever for so long...pray she doesn't get a fever with this because we want her to be able to wear her helmet.

Tomorrow we go to LA to get Mia's new helmet. Pray that it would be a good fit and that it would do the necessary job to get her head shaped right. Pray also that her head would grow and that we would be patient as we wait on God's timing.

I meant to post these pictures awhile ago...regardless, this is Mia with her Peace Rose...she really enjoyed touching the petals...she liked it!

Today in church we looked at Habakkuk and I was reminded of God's faithfulness to Mia. At the end of the book, Habakkuk says that regardless of what happens, "I will rejoice in the Lord, I will be joyful in God my Savior." (Habakkuk 3:18) This was a great reminder for Brad and I as we get closer to another surgery for Mia...just like her last surgery, we do rejoice in God regardless of the outcome because He is good always. May you be reminded of the goodness of God as you start your week.

Mia did pretty well with trick-or-treating. She went to her Grandma Cheri's and then to her Grampa Flash and Nana's house. I think she was slightly amused by her costume...when I put it on her she immediately held up her arms and was inspecting them, it was cute.

Mia got weighed today...she is now 15 pounds 11 ounces, yay Mia. Her cousin Joy is 15 pounds and soon to be 5 months...so far Mia has been passing her grown out of clothes to cousin Joy, but soon it will be turned around. :)

Happy Halloween!

Love, Our Little Pumpkin

Yesterday Mia and I went back to LA to have a consultation with another helmet specialist. This one was recommended by the doctor at LA Children's Hospital. We wanted her to look at Mia's helmet and see if it was doing the best job it could be doing because we want to avoid another surgery at all cost. Well, she wasn't pleased with the helmet for several reasons and in the end she thought Mia needed a new helmet...so she got a cast done of her head (it was extremely unpleasant for her) and we'll be going back next week to get her new helmet. Please pray that insurance would pay for it because it is a second helmet that can be a bit controversial.

Here is a picture of Mia in her Elmo towel she got for her birthday! Enjoy!!

Heart Surgery

So we finally got to LA today to see Mia's heart surgeon. We were supposed to see him at 11 and so we left fairly early because we hate being late and never know about traffic, yet we arrived at 10 with plenty of time...that was ok though because we needed to stop by medical records and get some of Mia's stuff so we thought our timing was perfect. But at 10 they called us and said he was in a procedure and wouldn't be able to see us until 2pm. Now you can imagine how I felt...I was like, no, what are we going to do for 4 more hours! So we went to medical records and Mia got a bottle and then we decided to grab some lunch and go to a park for awhile. It was actually a really really really nice afternoon, us just enjoying ourselves and being with the baby. She was content to play with Daddy, the weather was perfect, and we were just relaxing at a nice park near UCLA.

So at 2 we arrived back at the hospital and let them know we were here, at 2:30 a nurse came to talk to us and do a mini evaluation of Mia and then Mia's heart surgeon came in to talk to us. No matter how many times someone tries to explain what they are going to do to Mia's heart, I just can't picture it and really don't understand, it is almost frustrating...but Brad told me it's because they are using a 2 dimensional drawing to explain a 3 dimensional project...anyway, we went through alot of our concerns with the surgery and got some reassuring answers. If the job is done right, this will be the only time she'll need heart surgery, so we continue to pray for that. She'll be in the hospital about a week recovering and the tentative surgery date (I say tentative because until it is actually there anything can happen...like getting sick, etc.) is Tuesday, November 25th...the Tuesday before Thanksgiving. Brad said, do you really want to spend Thanksgiving down here, but realistically that is a good time for him because he gets Thursday and Friday off and he won't have to take as many personal days, so we feel like that is a good decision. In a way it is overwhelming to think that in a little less than a month she'll be undergoing another difficult operation, but we continue to rest in God's peace knowing that He is in control. So please be praying for this surgery. Pray that it would go well with no complications and pray that she wouldn't have to have another heart surgery again.

On a different note, Mia's left arm/hand is doing so well. She used to keep it fisted when she was clapping, but now she'll open it more and more...and we've noticed she's transfering alot more from her right hand to her left, which she hardly did before. Thank you God! And she knows Patta Cake (However do you spell it?) We start saying it and she starts clapping her hands...we got it on video and I'll try to put it on the blog in the next day or so...we continue to be so encouraged by these little things.

I also got good advice today from a nutritionist regarding Mia's caloric intake and we have some new things to try there, which made me very hopeful that she'll start putting on a bit more weight and even catching up a bit. So lots happening...lots of good things happening.

We saw a lady at UCLA wearing a t-shirt that said, "God is Good, All the Time". And it's so true, we are continually reminded of that.

Feeling Better

Mia is finally feeling better and we are grateful! Hope y'all are enjoying your weekend as we are ours.

We were supposed to go to LA today to visit with the heart surgeon, but he had another surgery come up and so now we are going to see him on Monday...at least that's what we think, at this point we're not sure we'll ever see him! He's a busy guy.

Mia is feeling better and so far this morning it doesn't appear that she has a fever, but I'll be monitoring her closely. I sure hope that it's all done with...this has not been a fun week for her. She didn't eat too well yesterday, so pray that she gets her appetite back today (as small of an appetite as it is!)

Ok, so I spoke too soon. Last night around 5ish Mia started running a low temperature, so we gave her some tylenol and hoped that would be the end of it...we ended up being up with her for most of the night...alternating between tylenol and motrim. This morning she was still running a temperature and at one point it was fairly high, but the motrim seems to have kicked in and is helping with that. Overall she's just not a happy camper...normally she doesn't like to just sit in my lap, but we watched all of sesame street together today...her just sitting in my lap. So pray that she'll be feeling better by tomorrow. I'm sure it is from the shot...so far it doesn't appear that she's had any seizures, which we are very thankful for. Pray that the fever goes away and she doesn't have any seizures. I will let you know how she's feeling tomorrow.

I took Mia in for an immunization today. She got her hepatitis A shot and seems to be tolerating it just fine, which is great...she hasn't had any fever and she's doing great. The nurse gave her the shot and she cried for about a minute and then was fine. And then we went home, it was pretty painless overall. For me and the baby. :)

So we were supposed to go down to LA today to see the surgeon who will be doing Mia's heart surgery, however he ended up starting a surgery late and so they asked us to reschedule for Friday. So we'll be going down on Friday to see him and hopefully have more information then. We continue to trust God's timing for surgery, so pray that we would be patient as we wait on Him.

Pray also for Mia tomorrow, I am going to bring her back to the pediatrician's office for her immunization, this will be the first one since her stroke and I get a bit nervous hoping that she won't react to it.

We had physical therapy this morning and she continues to do really well, we are now working on getting her to crawl. It's so neat to see her progressing and getting stronger, we are grateful.

On a different note, they told us awhile back that she had one central front tooth and she just started getting teeth on top, so we were curious what that would look like, well, she's definitely got two front teeth and they are very nice looking! So we don't know if that means they were mistaken (quite possibly...) or if when she gets her permanent teeth they will be different...but right now we just want to say thank you God!

Pictures

Here are some more pictures of beautiful baby Mia!! (and Aunt Goose)






I know this one is a little out of focus, but check out Mia's moose socks!!! They have moose on them and on the bottom are little plastic pads for traction in the shape of moose tracks. Too Cute!


Have you heard the one about the three turtles???

Today Mia has been feeling better, thank you so much for praying for her! We like having our happy baby around...we don't like it when she's upset. We'll probably go next week sometime for her shot, I'll let you know when. She also got weighed today and she's now 15 pounds 6 ounces. When I was at the pediatrician's office they told me she was almost 29 inches, I knew that couldn't be accurate, so I remeasured her at home...well she is now 28 inches...that's our long string bean. Today her teacher came to visit and was reevaluating how she's doing compared to when they first met her 4 months ago, I couldn't believe it has only been 4 months, but she's doing so well, we kept marking things off of her list and that made us very happy, we are so pleased with Mia's progress, we know that it's a God thing and so again, we say thank you.

Tagged

So apparently I've been tagged, I was supposed to go to My Pictures and pick the fourth picture in the fourth file...of course we have so many folders and subfolders that I had to pick the fourth of the fourth of the fourth, but this picture is of Brad and I and Brad's mother prior to our wedding, we were at the sight where we were going to be married and I believe we were just checking it out and discussing the possibilities...yup, that's when Brad and I were "fresh"! HA! Now I get to pick others to do this, so I pick Eliza, Nancy, Jaime, and Angela because I think y'all will actually do it.

So we were supposed to get an immunization today because Mia is now a year old and we had an appointment with her pediatrician, but we decided to put it off until next week because she just wasn't herself last night and this morning. She's been a bit irritable and she was a little warm yesterday. Last night she woke up at 10, 12, and 2 and wouldn't go to sleep on her own, she only wanted someone to hold her, which is very unusual, so I decided that I would wait until she was feeling "normal" before I give her an immunization. We've already decided to slow down the process because of her past seizures and so I've scheduled a slower pace for her. Yet this morning I kept thinking why does it have to be done today, it can wait a week or so and I think that was a good choice, so pray that she'll be feeling better, were not really sure what is bugging her. :( And pray for her head growth, the pediatrician is really concerned because it hasn't grown and she's calling her neurologist today to discuss it with him. Otherwise she's growing on her own slow curve and doing well.

Happy 1st Birthday Mia!

Sweet Baby Girl,

Mommy and Daddy love you so much. You are 1 today...we can't believe it has been a whole year. You've had quite a year sweetheart and we want you to know how much we love you and how we are so proud of you. You've been through quite a lot and so we wanted to reflect back on your year for you.

1 year ago you came into this world at 1:03pm. We didn't know if you were going to be a boy or a girl, but when the doctor said, it's a girl...Mommy and Daddy looked at each other and were so happy. Mia, we said, her name is Mia. We already knew you had a blocked intestine, but in a little bit we were going to find out some more things that weren't quite right.

They weighed you and took your measurements. You weighed 5 pounds 4 ounces and you were 16 3/4 inches long. Today you are now 15 pounds 4 ounces and 27 inches long. Sometimes we call you our long string bean because you are skinny and long. Considering how much you were in the hospital this last year, we think gaining 10 pounds is quite an accomplishment.

When they were looking you over they found out you didn't have an anal opening and then they did some more checking and realized your heart didn't finish closing off the four chambers, so all your blood was mixing a bit, and you had a blocked nostril. You looked beautiful to us, it was hard to believe that we made you...well, we know God truly made you, but he used your Mommy and your Daddy to help. Daddy always tells Mommy, you baked a beautiful baby...and it's true...you are beautiful.

Of the 366 days in the past year (it was a leap year!), you've spent 97 in the hospital. Mommy did the math and that is 27% of your first year. It was not a fun way to spend 1/4 of the first year, but you were such a trooper and such a good baby that all the nurses wanted to take care of you. Mommy didn't want to figure out all the days we made trips to LA and other places for doctor visits, but she figures we do alot of the doctor/therapy/hospital stuff. Our prayer is to do alot less of that this coming year! You also went through 4 surgeries this past year. The first one was to fix your blocked intestine, which happened when you were 1 day old. The second one was to keep your heart from going into heart failure with a PA Band, that one happened when you were 13 days old. The third one was to fix your blocked nostril and the fourth one was because your skull had fused early. That was the hardest one because you had a stroke during the surgery, but God has been faithful and He continues to heal you inspite of the bleak outlook the doctors gave us, and we want to give Him all the glory for that.

You've been quite a testimony of God's healing power and grace for alot of people sweet pea. You've impacted so many people all over the world, it's amazing to see how God has used your little life in such a big way, but the Bible says, when we are weak, He is strong, and that is so true. Over the past year, God has helped you to learn how to sit, roll over, and bang on drums (maybe you'll be a drummer someday). He's helped you to gain ability with your left hand and that keeps improving each day. He's given you the ability to speak...you've got quite a bit of baby babble happening already. He's allowed you to see and know who your Mommy and Daddy are even when the doctors told us that wouldn't happen. God is so good baby girl and He continues to take care of you, we are grateful.

Why Mia Danielle? Well, when Mommy and Daddy found out we were going to have a baby, we didn't want to know until you were born if you were going to be a boy or a girl. But we immediately settled on Mia if you were a girl because we both loved that name so much. It was a real easy decision. We had alot harder time thinking of a boy name for you, so we were real glad when you were a girl! Danielle was chosen after your Grandpa Dan who passed away 6 years before you were born, in fact, your birthday is on the day that he went to heaven to be with God. We think that is pretty special, we didn't plan it, but God knew. He knew long before you were born that you would be born on that day. And He knew you would be born with all these complications and He is using it for His glory.

We couldn't have imagined a sweeter, more precious, baby girl. We love making you laugh and watching you grow up. We don't expect this coming year to be easy either, but we know that if we put God first, He'll help us through everything.

We love you all of it baby girl,
Mommy and Daddy

.999

Today on Daddy's homepage it said Mia's age: .999 We thought that was pretty close to 1 and decided to celebrate your birthday. It was a whole lot of fun. Because you are 1 now we decided to let you invite 1 friend to your party. And you chose your boyfriend Jacob. Of course his older brother and mom got to come along too, so we might have to discuss those rules a bit more next year when you are 2. But you had a great time. You had an elmo cake and you opened presents and you got lots of love pokes because your Aunt Goose was here! Your Aunt Rachel and Uncle Tim were also here via Skype from Italy. They saw your whole birthday party! Lots of others were here also, like your Uncle Paul and your Nana and Grampa and of course Mommy and Daddy and we can't forget Aunt Goose's boyfriend Jared. Here are some of the pictures from your fun day.

Slowly but surely Mia keeps getting bigger. She's now 15 pounds 4 ounces, which is great. Her birthday is coming up real soon and it's funny because the law in California says for a child to face forward in a booster seat they have to be 1 year AND 20 pounds. I remember picking out her car seat a year ago thinking, oh no...what if our baby gets to 20 pounds before the year is out...not unrealistic since Brad and I were both decent sized babies. Now sometimes I think, what if she is in this car seat until she is 2...probably very unlikely, but I wonder when she'll finally get to face forward. All in God's timing. :)

Right now she has all these toys on the floor in the office by her and what is she playing with...my empty boxes. Figures. :)

Enjoy your weekend!

Mia Pictures

Mia has this drum that she loves to play with...it's the perfect size for her to practice sitting with, which she's getting really good at, she just can't get herself into sitting yet. We're still working on that.

We now have an appointment to see the surgeon who will perform Mia's heart surgery. Our appointment is on the 20th of this month. After we speak with him then they'll schedule her surgery. Please pray for wisdom and scheduling. Pray that Mia would stay healthy also.

Peace

Mia has been doing really well. I've been battling a cold recently, that's why there haven't been many blog posts...I've been sleeping when Mia takes her naps to try to keep up with the baby when she is awake. We still don't know more about her heart surgery yet, but hopefully we'll get some more information on Monday or Tuesday.

Today some dear friends brought a rose over for Mia. It's the Peace Rose. It is too remind us of God's peace that He gives to his believers, which Brad and I can attest to having felt firsthand over the last year. We've attached a picture of what the rose will eventually look like. Thank you for always remembering our little girl in your prayers, we continue to be so grateful.

So we don't have an official date of heart surgery, but it looks like that will be the next step for Mia. We are waiting to hear from her heart surgeon, we'll schedule an appointment with him and then discuss it and go from there. So sometime in the near future it may be happening, we'll see what he has to say regarding this.

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. :)