A year ago today

A year ago today marks the date that Malia's blog/birth story began. It's so hard to believe a whole year has flown by. With the many sleepless nights and the never ending exhausted emotional days a whole year has passed right before our eyes! Wow, it's so hard to believe that a year ago Malia was ultimately fighting for her life and my life was being compromised in the midst of her horrible circumstances. Those were some of the toughest decisions Harley and I have ever had to make and I can't even imagine making them without the comfort and wisdom of the Lord. Thank you Jesus for always being close and never leaving our side! Today the girls and I went to Chick-Fil-A because a year ago that's where we went right before my 3D ultrasound.(Harley would have gone but he's currently in Kenya) It was a day where we gave thanks for Malia's life knowing that the circumstances could have been very different if I never would have had that ultrasound. Malia celebrated too with a little cut-up chicken, fries and ice cream. Amazing! I just sat there in awe as she ate her food. Praise God! I am so thankful for her life and the abundant joy she brings into our family. She is truly something special!

11 Months

I am 11 months

I'm really getting good at sitting up and
I can even reach for things that are close by.

I sometimes reach a little too far and end up on my stomach but
that's all good b/c I am learning how to pull with my arms to get
where I want to go. I sometimes push backwards and get caught
under furniture, I'm becoming quite adventurous.

I love my sisters and I light up whenever I see them.
I especially light up though when I see my daddy! I really
love my daddy!

I'm pretty content all the time. I like to hang out on the floor
with toys, in my highchair with some food or in my little
entertainment saucer.

I am trying and eating all sorts of different foods now. I'm not
very picky and I even ate a whole bowl of mashed up avocado and
applesauce last night.I need to make sure I am getting enough
calories so mommy usually tries to find food that has a high
calorie count.For example, I eat a lot of yogurt, cheese,
avocado, cereal and stage 3 baby meals. I also like to munch on
veggie straws, puffs and of course cheetos :) I only need to
use my feeding pump about 2 times a day. I'm able to drink about
2 ounces by mouth and the rest (6 ounces) goes through the pump.
Hopefully soonI won't need to use the pump at all but my throat
needs to heal first.

O' last thing. I am a really good sleeper. I always have been
so not a lot has changed but I usually sleep from 7-7 with 2 naps
during the day. I'm pretty awesome!

It's in her DNA

I found Malia one day playing with her sisters' computer. It was so cute and so precious I just had to take a picture. It must be in her blood. I really think she liked the noises it made but nonetheless, cute!

My FIRST Tooth

If you look closely, you can see my first tooth, yay!

Malia clapping

I just looked over and Malia was clapping for the first time in her swing. I had to get video!!

Playing in the Snow

Enjoying the snow. It was a high of 45 degress so the snow is melting in the background.

Throat Update

We went to the ENT 2 weeks ago (sorry for the delay in update, Harley has been in Indonesia and I've been in survival mode with 3 kiddos). While there, the doctor put a camera down her nose (she cried!) and instead of seeing improvement, she saw that her vocal cords were swollen, red and irritated from reflux. Before we can see improvement we need to get her reflux under control, hopefully with medication. Her reflux medicine hadn't been adjusted since discharge so the doctor doubled her dosage and now we wait, once again, to see improvement. We will follow up in 3 months. A big prayer request is that the medicine does heal her reflux. If not, surgery is a definite possibility in order to control the reflux from doing permanent damage.

Hanging out on her little bunny pillow.

Just a cute picture!

I took this picture back in December so it's a little out of date but I finally just processed it. I've been going back through pictures and started putting more pictures up on the blog back in June. Life was a little busy back then and I just want to get caught up and current. I will hopefully keep adding to June, July and August. I wasn't quite into blogging then like I am now ;) And I've realized that this will most likely be Malia's baby book so I better do a good job at putting pictures on it.

9 Month Update

Malia is now 9 months! Where has the time gone? She is so sweet and such a little peanut still, I feel like her baby stage has lasted a long time. A huge praise, she has been off her cardiac medicine for 2 weeks now without any signs of SVT. The cardiologist thinks she has grown out of Wolf's Parkinson's White Syndrome (WPW) but the only way to know for sure is to take her off her cardiac medication. We were of course a little nervous but we've been checking her heart rate daily and it's been so nice not having to remember another medication. We will follow up with the cardiologist in April for her 1 year and if everything still looks good (Echo and 24hr telemetry strip) we will no longer need to see the cardiologist, yay!

At her 9 month pediatric appointment, she weighed 15lbs 13oz. A huge gain from 3lbs! She's come a long way. She's 27 1/2 inches long which puts her at 50%. It's pretty amazing that she's on the growth chart at all let alone being at 50%. The pediatrician is blown away by her growth! We introduced more solids after her appointment last week. She is now eating yogurt, cheese, puffs, bananas, diced up pears and anything else that we are eating and I want her to try (she's such a 3rd child). Still no teeth but something tells me it won't be long before they start popping up.

She is almost sitting up on her own, unsupported. She's so close but not quite there. We attend the developmental clinic later this month for a follow-up so I will have more of an update then. She loves her play time in her exersaucer and johnny jump-up. She's also content with just playing on a blanket with toys.

We have an ENT appointment this coming week to see if her throat is healing any on it's own. We are pretty excited to see improvement and hopeful that we will!

Hanging in my highchair

I love to just chill in my highchair after I eat

Trying my best to get miss Malia to smile and she's just staring at me
Now we have smiles!

Malia has been eating her solid foods great. So great that she's dropped a formula feeding and only needs the feeding pump 2/3 x's a day. Yay! She eats cereal twice a day with a fruit and vegetable. Doesn't seem to be too crazy about peas but we keep trying :)

Merry Christmas!

I just thought this was a really cute picture.

Malia is getting really good at pulling out

her feeding tube while the pump is still

running. If I don't catch it right away

she can be a huge wet mess of milk.

She's one little stinker.

Home Away From Home

These are some pictures from when Malia
was sick in the hospital. Actually, her fever
had broken and she was all smiles pretty
much her whole stay.

Her IV coming out of her poor head.

Her big ol'bed. A little different from her NICU bucket.

They needed to place a new IV and attempted 6 times.

Lucky #6 went in her ankle. Poor baby had to endure

3 pokes to the head and 2 in the arm before they were

able to successfully put it in her ankle.

Spinal Meningitis??? What!!!!

After having a fever for a whole week and it not going away with strong doses of antibiotics, the pediatrician thought it would be best if we got a spinal tap done to rule out spinal meningitis. I took Malia to the ER Friday morning and 5hrs later the doctor was telling me that Malia tested positive for spinal meningitis. Here is where it gets complicated. There are 2 types of Meningitis, viral and bacterial. Viral you just let it run it's course, it can make you pretty sick with flu like symptoms but it usually goes away after 5 days. Bacterial can be very dangerous and needs to be taken seriously with a long regimen of antibiotics. Malia's test came back indicating that she most likely had viral spinal meningitis but since she had been on strong doses of antibiotics all week for her ear infection they were not sure if the antibiotics were in deed actually treating the bacterial meningitis making it look like viral. (ughh, i told you it was complicated) So, at this point they had not choice but to admit Malia to the hospital and treat her as if she had bacterial spinal meningitis until her blood work indicated otherwise. We were told that it would take at least 48hrs if not longer for her blood work to come back indicating any viral type infection and she'd need to stay in the hospital until the results came back. By Tuesday, we still didn't have a definite answer to whether it was viral or bacterial so they assumed it was bacterial and treated it as such. Malia was thankfully doing much better and hadn't had a fever since we admitted her on that Friday. She was able to be discharged Tuesday with a home health nurse coming in to give her antibiotics over the next 5 days.

When we think about "what could have happened" we are extremely thankful that Malia pulled through this very serious illness in the fighter type manner that she's pulled through everything so far. She is one tough cookie! A big Thank You to Harley's step-mom who came out for 6 days to play nanny/mom to Kayla and Lydia. She was a huge help and it was a huge relief to have her here so I could be at the hospital with Malia. I, of course, can not fully comprehend God's plan for Malia's little life but I can only think it will be something truly and utterly amazing! To be so small and to have already endured so much but yet have so much still to overcome, she's absolutely amazing. Thanks once again for all your prayers. I truely believe this girl "fights" through every situation because of the many people praying for her.

Go away Fever!!!

After a trip to the pediatrician's office today and then a trip to the hospital to get a blood work-up, we were able to find out that Malia's white blood cell count was really high (she was at 27 normal is 10), causing her to still have a fever and some vomiting. These levels indicate that her white blood cells are fighting some sort of infection and she needs to be on a strong dose of antibiotics for the next 2 days. Please pray that this is all it is and that the antibiotics kick in sooner than later. It's so sad to see her so sick. We haven't seen her smile in 3 days. They also took a chest x-ray to rule out pneumonia and did a urine analysis to rule out an UTI. Those test came back negative. It's been a very long 3 days!

Double Ear infection

The poor baby has a double ear infection and if you could see her right now, you'd say "poor" baby too. She has been battling a high fever since Friday. Last night is when the high fever turned super high (106) and she began to vomit everything that went in her stomach. I took her into the pediatrician today completely sleep deprived and worried something was really wrong. I had no idea that an ear infection could cause vomiting and such high fevers. She currently still has a fever and is laying on my chest completely drained. She is still vomiting the little amounts of pedialyte that I am able to give her through her g-tube but the pediatrician gave her a super boost antibiotic that comes in the form of a shot and is administered into her leg so hopefully with that in her system and a 9 day regimin of Amoxicillin, she'll be better in no time. Just praying her fever subsides and that she stops vomiting so she can stay hydrated. I'll keep you all posted on her progress.

Cereal time!

All ready to eat cereal, yum,yum!

Getting a little messy

A little more messy

And.... she's officially a mess!

I'm really not sure how much she actually swallows since it appears that she's wearing most of it but I'm pretty sure it's normal. Practice makes perfect and since liquids aren't really going to be her friend, she needs to learn to eat food.

I'm 6 months already!

Sorry it has taken me so long to update Malia's blog. As time goes by I am reminded of how much Malia is a part of all your lives as she is ours. She has been lifted up in prayer and brought before the Lord time and time again and we've all grown to love her! She holds a special place in our hearts as we are constantly reminded of what God can do and continues to do in her life.

.We had a busy week last week with 3 appts. to the pediatrician, the hospital for a swallow study and a developmental assessment done by pediatric rehab. The pediatrician was thrilled with her growth. At 6 months she now weights 12lbs. 5oz and is 25 1/2 inches putting her in the 5th% for weight and 25% for height. At her corrected age of 4 months she is in the 25% for weight and 75% for height. The Dr. was so pleased that she doesn't need to see Malia back for 3 months. This was a huge relief since we were previously making monthly appts. and bi-monthly weight checks. Yay for one less thing!

.The swallow study didn't go as well. We were so hopeful that Malia's vocal chords were healing allowing her to swallow and tolerate thinner liquids. That wasn't the case and we basically took a step in the other direction. The radiologist was able to see that she was silently aspirating on "nectar" thick consistancy and had to change her to "honey" thick consistancy with a slow flow nipple making it pretty much impossible for Malia to drink her full feeding. So......... back to the feeding tube, nooooooooooooooo. I was so bummed, we were so hopeful but we are also so thankful that we found out. Aspirating can lead to pneumonia, chronic coughing or long term lung damage so we are very thankful we caught it in time. It's definitely more work going back to the feeding tube but this time I am able to feed her 100mls from the bottle and 100mls from the tube at the SAME time. Since her reflux is so much better she can tolerate milk going in her mouth and her tummy at the same time. Feedings take about 15min. once I get everything set up and ready to go. I definitely had to adjust my mindset but once I did God was so good at giving me the strength, endurance and positive attitude that I needed. Amazing how He works!

We ended the week on a more positive note. Malia attended the developmental clinic where a pediatric doctor and occupational therapist evaluated her on her developmental progress, strengths and areas of concern. They were able to give me recommendations and a plan on how to improve some of her weaknesses. Overall she is developing very well. Her strengths are that she has a super invested family, she is very social and tolerated the eval nicely and she is doing well with her feedings. Areas of concern were that she showed decreased strength throughout her trunk and was only able to hold her head at a 45 degree angle instead of 90 degree angle. Their recommendation was to encourage more "tummy time" to increase overall strength which she absolutely hates so I'm not very good at encouraging it. We'll get there though. They will re-evaluate her in 4 months to hopefully see improvement and hopefully "no" areas of concern.

Us girls are all by ourselves these next 2 weeks as Harley is in Africa. Please pray for his safety as he is traveling and pray that I can be a good, patient and loving Mom in his absence. Thanks again for continuing to pray so fervently for Malia. She truly is such a special and sweet, sweet baby.

All bottles!

Malia has made huge gains this past week in the feeding department. She has not needed the pump for a whole week. She is taking all her feedings by bottle!!! I waited a whole week to post this in fear that it wouldn't last but she is doing great. She was doing 6 feedings a day (100ml's at a time) but dropped one feeding last week and is drinking 120mls 5x a day of thickened milk. She also is rolling over from her back to her tummy. A huge developemental milestone proving that she is developing right on target. Praise God! She is enjoying playing with anything she can get her hands on as well as putting everything in her mouth.

Malia update - I'm 5 months old now!

I'm 5 months

I've been doing very well. I'm taking it easy on my mommy and daddy and I can't even remember the last time I puked all over them. I'm taking my whole bottle (100mls) 4x's a day and then Mom uses my feeding tube for the early morning and late night feeding. That way I get to sleep while I eat. It's a pretty sweet deal :) I've been sleeping through the night for a long time now. My mommy even has to wake me most mornings at 7:00am to get me started on my feeding schedule.

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I went to the cardiologist yesterday and everything is still looking good. They are not sure if I have WPW anymore but I need to stay on my cardiac meds until I'm one years old just to make sure. Then I can do a trial off my medication to see if my heart goes into SVT determining if I have WPW or not.

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I also went to the ENT (ear,nose, throat) doctor yesterday as well. She put a camera down my nose and into my throat to see if my throat is healing on it's own (I didn't like that very much). The doctor was very pleased with my progress and said that she can see healing taking place and wants to do a repeat check in 4 months. She thinks that as my throat heals, my voice will become more audible as well. It was hard for her to say if my throat will completely heal on it's own but she's seen infants do amazing things and she is hoping that it will.

Tummy Time

Not her favorite part of the day but o' so important.

Stay up to date

Keep up with the family at...........

www.lookatmoore.blogspot.com

Sleeping through the night!

Guess who slept 8 hrs last night????

Yep, you guessed it!

Go Malia, do it again!

Getting bigger!

Malia is now 10lbs 3 oz. Gaining weight like a champ!!! She's also 22 1/4 inches. She's come a long way in these past 3 1/2 months and we have so much to be thankful for! She is definitely spitting up less, we've figured out every trick in the book to keep her food down. She does still have the occasional moments but they are way less frequent.

Four weeks flew by!

Wow.... It's been 4 weeks from when we brought Malia home! Where has the time gone? I can not put into words the joy and elation we felt the day we got to take her home! We were a bit nervous I must say but excitement definitely overshadowed our anxiety. I'm not sure where to start since I have four weeks to catch up on but I guess I'll start with week one. Bare with me :)

Week One: We came home with Malia on a routine of eating every 4hrs. 105 ml's of milk, 22 calorie count formula additive, 6 feedings a day. She would eat about half of her feeding from a bottle with thickened breast milk and the other half of her feeding would be through her g-tube, 2 out of the 6 feedings were solely g-tube feeds at night(except the first night, read on). She came home with oxygen for the bottle feeds just to give her the extra energy to drink and keep her heart rate up. She also came home taking Propranolol for her heart 3x's a day and Prevacid 2x's a day for reflux. Feedings were taking about an hour each time with maybe 15 minutes for clean up. The first night home they wanted us to continuously drip her feeding into her over a 8hr time period. It sounded wonderful thinking we were going to get a full night's rest but that wasn't the case at all. Not ever sleeping with this child before, we had no idea that she could grunt and I mean grunt! It was so loud we were up all the time checking on her making sure she was ok. We still needed to get up every 4 hrs to change the milk in the pump b/c you can't leave breast milk out for 8 hrs. Needless to say, the "drip" plan didn't work and it was about to get changed the following night. The next day, Harley and I came up with a plan where he'd take the late night feeding, I'd take the early morning feeding, I go to bed early, he sleeps in a little. It worked like magic. That became our night time routine for the next two weeks. During the day though, things were not working out so well. She began throwing up her feedings in large quantities at least 2x's a day all over the furniture, all over herself, all over us. We were getting pretty frustrated and trying to figure out this sudden change. Just when we thought we knew the reason, we'd make the change only to have her throw up on us again. Grrrrrrr.......this girl was definitely testing our patience to say the least!

Week two: This week was the week of follow up Dr. appointments. We started off the week at the pediatrician. Malia was gaining good weight despite her throwing up, the Dr. increased her reflux medicine, gave us some good pointers, and was overall happy with Malia's progress. Next was the ENT follow up. The Dr. assumed her issues with her throat were the same since her voice hasn't really improved volume wise and wants to do a scope of her throat in 2 months to see if any healing has taken place. Then we had a follow up appointment with the pediatric surgeon to look at her g-tube sight, everything looked good. The last appointment of the week was with the opthamologist who did her eye surgery. We received wonderful news that her eye surgery was successful and she no longer has retonopothy. Yay, praise God!

Week three: She's still puking but it doesn't seem to be as bad. Maybe once daily or even not at all on some days. Things seem to be looking up for Miss Malia and then we go to "feeding clinic". Feeding clinic consist of a Doctor, Occupational Therapist, Speech Therapist and Dietician. They think it's best to put Malia on a 3hr. eating schedule, decrease her milk volume but increase her calories and then let her sleep 6hrs at night. The plan sounded good. Sleep 6hrs. of straight sleep at night, wonderful! Well........... not so wonderful. By the next day Malia was puking up EVERY feeding. We were absolutely beside ourselves! You can only get puked on so many times before you have a melt down. So, I had a melt down! Harley and I tried to brainstorm every possible reason she would be throwing up more. Were we moving her too much during or after feedings, was she upright enough, was her reflux medicine working or is the additional calorie formula too much to tolerate. We had no idea but we needed to make a change so we decided to take her off the calorie additive to see if that would make a difference. Well, it did. She was eating like a "rock star" keeping everything down and even finishing her whole feeding by bottle at times. We thought we had it all figured out again but then 4 days later, she started spitting up and even puking some of her feedings. How frustrating, we were back to square one!

Week four: The dietician suggested we switch calorie formulas so we did and that was even worse. Man o' man, finally I went back to the schedule before feeding clinic, tweaked it a little to coordinate with our schedule better and have been slowly getting her calories back up with the original formula. We go to the pediatrician next week, so hopefully she is gaining some weight and everything is ok. As of now, she is tolerating most feedings with minimal spit-ups. We have gotten really good at recognizing discomfort while feeding and know when to burp and know when to keep her completely still. Harley's step mom, Katie, and 2 little sisters flew in from IL. to help out while Harley is in Haiti this week. It has been absolutely wonderful having them here. Katie is a Labor and Delivery nurse and she has taken on the role of feeding Malia. It has been an amazing break and she's doing a great job! Thank you Katie!

Hopefully from now on these updates will be at least weekly and not monthly. We apologize for not blogging sooner but life has been busier than we have ever known it to be! She is absolutely precious and seems to be thriving at home.

Specific prayer requests for Malia:
1)Healing of her throat and vocal cords.
2)That her brain is developing on track with a normal six week old baby.

Discharge on the horizon!?

With the G-tube now in and functional there has been some talk of discharge for a couple days now.  There are still some technicalities to get taken care of, but it seems like the NICU is planning for a Tuesday (June 29th) discharge for Malia!!!  Seems almost surreal to us, the idea of not having her in the hospital anymore.  Not having to make that drive to see her only to despise having to leave her.  Not having to coordinate childcare (as often ;) ).  There's honestly not much we will miss about having her there.  We cannot wait to have her home!  It's going to be so awesome.

Ok, I'll admit it there is a little bit of anxiety around us becoming her primary care givers.  Not that we haven't had practice raising sweet little girls, but with this one we'll also be taking on more medical responsibilities.  So we all went to visit her today and started getting hardcore training on the things we need to do.  That G-tube thing is pretty funky by the way...  it has an extra burp tube that seriously makes her burp out of the tube when you put it in.  If you thought real burps smelled bad..... (just kidding..)  Also, learning more about the special mixture of milk she has to take.  We're having to pull some of our old math skills out of the archives to figure out the correct number of calories and thickness of her milk (different depending on if it's done through bottle or G-tube).  Keeping track of her different meds with the associated dosage and times.  Learning how to properly listen to her heart with stethoscope so we can identify irregularities if they arise and respond accordingly with vagal maneuvers in the event that the high heart rate (SVT) occurs.  Those are some of the things we have to keep tabs on.  If you're looking for something to pray about please feel free to keep us in prayer regarding this challenge.  Don't be mistaken, we're soooooooo happy she is coming home and we'll be able to hold her, love on her, and get this family thing back to where it left off.  Just some final details in the next couple of days and if everything goes as planned we'll be taking her home Tuesday sometime.

G-tube surgery

Since the eye surgery (June 11th) there have not been many changes.  Much of the same feeding, not feeding, on oxygen, off oxygen, back on oxygen.  Without the necessary progress on her oral feeding, the recommendation was made to go through with the direct stomach feeding tube (aka G-tube).  The surgery took place on Wednesday, June 23rd.  Although we did not want it to have to come to this, we were in agreement that it was necessary given the lack of progress on oral feeding.  The surgery itself brought little to no anxiety for me and Alison.  It was the fact that she needed to be intubated and sedated that gave us great concern.  The past 2 procedures, where those issues took place, the complications were less than fun and we did not want Malia or ourselves going through resuscitation-etc.  None the less we went through with it.  We prayed hard and had the opportunity to share our concerns with just about every and any doctor or specialist that would be involved.

As a side note, during surgery prep I learned that Malia had an episode of SVT (heart rate in the 280's) the prior day.  Was definitely surprised to find that out, via some side comment I picked up from a nurse, but was happy to hear that it was quickly resolved via the doctor sticking his finger in her throat.

The surgery went off without a hitch!  What a relief and blessing to not have any craziness post-surgery.  With this surgery completed it now opens up the possibility that Malia could be coming home soon.  Next step is to get her back on track with normal food in her stomach and gaining weight again.

Bonding with Malia

Some bonding time with Malia before she goes to surgery. What a sweet pea!

Kim visits from Denver

Kim came down from Denver to meet Malia for the first time in the hospital. She had some good cuddle time with Malia and then we went out for Mexican downtown. Kim and I have been friends for years. Our friendship dates back to kindergarten and we've been reunited ever since Kim moved to Denver in 2001.

A picture of Malia's big girl crib. She's outgrowing all the cribs, she needs to come home!

Actual Due Day!

Today is the day Malia was suppose to be born. She now weighs 7lbs. 12 oz. It was a hard day today because I've been wanting Malia home for weeks now and she's still in the hospital. Discharge is still to be determined but it could be another 2 weeks.

Malia's Baby Shower

My wonderful friend Kristen threw are baby shower for little Malia and myself. Kristen is an incredible momma, and talented baker, an amazing hair dresser, and a very beautiful woman who loves Jesus! Thank you Kristen!

The group of girls

A glimpse of Kristen's decorating ability, she's amazing!

There's a story behind this one, hence the facial expression.

Michelle's girls have one at their house and I covet it everytime I go

over there. She thought I needed one too so she got the small group girls to go in on

it. I can't wait to put Malia on it and get some pictures!

More adorable outfits!

Michelle, myself and Lauren

These are two of my dear friends from small group and also my

pool buddies.
Nickie and me

Nickie I have know the longest out of all the women at the shower.

We started working together back and 2000 and developed a friendship

that will last a life time

My other 2 small group girls and dear friends! Anne and Krista

Myself and Marlys

Marlys works at Compassion with Harley and I took care of

her little boy for several months before Malia was born.
Leilani, her little girl Sydney and Abby

These friends have been instrumental in helping with "the girls"

while I visit Malia at the hospital. Thank you!