and the blog goes on...

In some ways it feels weird to go back to normal blogging life like our whole world hadn't just been shaken...but I'm a big believer in moving forward-so, here I go. :)

My little Christmas present:
(big thanks to the Parr girls for keeping her bowed up :))

I mean, is there anything better? (Update: I have in fact showered this month, although it doesn't look like it from anything I post!)

Still smiling!

Just a cute picture of Ava that I love. Kind of can't get over how much I love their tutus. :)

We're Home!

Thanks for all the prayers, well wishes, gifts, food, prayers and support over the last 2 weeks! I have worn a velour warm up suit and no make up for 14 straight days! :) Here are a few photos from our journey. So thankful to be home...what a gift! May Jesus bless your holidays as he as done so mightily for us! Merry Christmas!

Ava visiting Baby Kaiya and very concerned about her "owie". (tubes)


Some nurses that we love.
Moving out of ICU!
Protective Dad took over the message board. :)

The OT and PT were both very happy that she had good head control. I guess that's a good sign! Thank you God!
Smiling at Grandma.
Some of the first smiles afterwards caught on video:

T-2 Days!

Hopefully in about 48 hours we will be out of here! Probably dependent on the blizzard we are having in Western Michigan. I'm not even kidding, it said "Blizzard Warning" on TV. Are we on the north pole?!

I don't have much to report, and hate to write an update just for the sake of writing one. But-a few things to say today. First, I think we were misinformed about another ophthamologist coming by to see Kaiya yesterday or today. I think there was some confusion about whether or not he had already been by-and when you have seen 18 doctors, no lie, there is bound to be a few misunderstandings! Anyway, we will see the pediatric ophthamologist again in a couple of months. No change, still, in her eye.

The occupational therapist came by today to check her out. She was pleased at Kaiya's performance. She smiled and acted real cute for her. :) She gave us a few things to look out for-but overall didn't have too many concerns at this point. We will be having Early On-a program to work with children with developmental concerns, come to the house monthly once we leave to make sure she is developmentally on track.

Other than that, I'm just counting the days of no more weird smelling dinner trays and cots and dirty floors..but so thankful for this wonderful hospital and how good they have been to us and our sweet girl.

We will let you know once we are home safely, but then pending no major changes, quit bugging your email with updates and just keep our family blog current with the day to day life from here on out.

I am continually mindful of the verse my Mom told me our first day here, Luke 8:50-"But when Jesus hear it, he answered him saying "Fear not, believe only and she shall be made whole." Continuing to pray for complete healing and so immensely grateful for the miracles already granted to us. Thanks for your partnership in that!

Love to each of you!
Mark and Heidi

Good news

They came and did the hearing test today and from the initial report they believe both ears are normal. Thank you God! I guess hearing loss is the biggest concern with this particular type of bacteria, so this is a big blessing. Of course they say they still have to test her every six months, etc. but-we are so thankful for that good news today!

Sunday Night

There wasn't too much of an update today. Just got settled into our new room. Unfortunately I (Heidi) got struck with a stomach bug, so my wonderful husband and parents basically took care of Kaiya for the last 24 hours.

Our main prayer still is for her eye. Haven't really seen any improvement. So hard to think about her having to deal with that. I wish it could be me!

Thank you for continuing to pray with us.

Saturday Afternoon

Good afternoon!

We just got done moving from ICU to the regular pediatric floor. It's amazing how much stuff you can accumulate in just 9 days. We looked like a legitimate gypsy caravan moving through the hallways of the hospital....wagons, etc.....I have always felt that you never really know how much "stuff" you have until you have to move it.

Kaiya seems to be adjusting well to the new room. The nurses here are great, just like the ones we had upstairs. Heidi is now sleeping, and Kaiya is in Grandpa's arms. I held her last night until about 4am, it was pretty special daddy/daughter bonding time.

Please continue to pray for Kaiya's left eye, still no movement with the eyelid, and no pupil reaction to light. She will see another eye doctor on Monday, and we are hoping he will notice some progress since Thursday. Other than that, the doctors are very happy with the progress we have made in the past 2 days, and we are very thankful as well!

Still looking like we are on target to be home by Christmas....Love to you all!

Mark

Friday Night

We had a really good day. Such a treat. She is actually a little restless right now...but this is the first of that. Today felt like a huge weight off my shoulders. She smiled so much my cheeks hurt from smiling with her. (not a complaint) :)

She has a hearing test on Monday, that's one of their big concerns. She will have to be sedated for that test. I don't think she has too much hearing damage, if any-she definitely reacts to noise.

We had a good heart to heart with the Infectious Disease dr. today who advised us to lay low for the rest of the winter. This translates: no church nursery for Kaiya or Ava. And no big parties, etc. That's a real bummer, because if you know me at all-people and going places is pretty much what I live for. However, I'm not interested in being here anymore. And basically I think if Kaiya ends up with another fever, we will be on the fast track back to the hospital. Also, we have looked up how to get the cool Purell dispensers installed in our house. :)

Thanks for keeping up with us. I feel like me saying thank you is getting old, but I mean it so much. I just can't believe all the support.

Praying she gets her big pretty eyes back soon. Goodnight!

Friday-More Good News.....Mark

Hello everyone,

Today has been a very good day. Kaiya has spent most of the morning sleeping in either mom/grandma's arms. No visible discomfort. Vital signs are steady, and her heart rate is not decelerating like it was yesterday.

Kaiya and Heidi have exchanged several smiles & conversations this morning, which has been a big highlight for everyone!

NG tube is out of her nose, and now we are down to just 1 central line IV.

We are all starting to breathe a little easier! Looks like we will be moved to the pediatric floor later today/tomorrow first thing, which is a very good sign. Christmas is still our target day for going home.

We will continue to share any & all progress......

Thank you all for your continued thoughts, prayers & support.

Mark

Rollercoaster, of love....

What a rocky two days. Tonight I feel like I am able to take a little sigh of relief. While I have known and felt your prayers all along, they seemed especially palpable today. Today I thought-ok God! Change me, fix me, I will tell everyone how wonderful you are I PROMISE, but could you just help her stop hurting?!?

Tonight sweet Kaiya is resting peacefully. Thankfully she started eating right before she was going to get the tube put back into her intestines. (It worked its way out yesterday). For the rest of the day she nursed well, and soothed much more easily. Thank you, Lord. Not being able to comfort your baby is probably one of the most agonizing things ever.

God has been SO good to us. I can't believe the nurses here. There are several I want to take home in my suitcase and hope it's not a HIPPA violation for us to be friends after life in the PICU. Her EEG and EKG results were normal. Hallelujah. She got the tube out of her nose, and now only (only?) has the central line in. Her eye is very slightly, but nonetheless a teeny bit reactive. They have cream cheese muffins in the cafeteria. It's the small things.

So I haven't even finished my thank you notes from Kaiya's birth because, well, I'm just bad at that. So those of you who have been so ridiculously generous, please know my heart is so grateful, but I might need a couple months to express that to you in written form. :) The magazines, treats, fun make up, sock slippers, shower stuff, has been just amazing.

While we have made great strides this afternoon/evening-we are still in a serious state and will be for awhile yet. Her eyelid is slightly slit when "open". Please pray for continued healing and reduced inflammation of the retina/nerves/brain. Also her heart is having pretty consistent decelerations still. Through lots of dr. checks-this seems to not be too alarming, but they would definitely like her heart rate a little higher, and more consistent. And just for her comfort, as she seems to be struggling with reflux issues, pain from the removal of the ventilator, and headaches. So hard when you don't know what is hurting them.

Tonight I was thinking about the whole potter thing. "Woe to him who quarrels with his Maker...Does the clay say to the potter, 'What are you making?' Does your work say, 'He has no hands'?" Hopefully God is changing all of us, even maybe some of you. Molding us into something just a little better. (like, a cooler vase or sugar bowl or something)

10 weeks and 2 days ago God gave us such a precious gift in sweet Kaiya Lane. I feel like, especially at this time of year, I have been given the gift of her all over again.

May God richly bless you for the blessing you have been to us.

Thursday afternoon

Things have calmed down a bit. Kaiya is now sleeping, and so is Heidi.

At around 1:30, Kaiya did very well with a feeding. The valium seems to be taking effect and we are hoping she will sleep for a while. Cardiologist has yet to read the EKG, so we anxiously await those results.

Trying to keep things positive over here! The past two days have been a roller coaster of emotions.

Will keep you updated, thanks for all the support & prayers.

Thursday Noon

Today has been an extremely stressful/irritable day for Kaiya so far.

She is not eating/feverish/heart rate is abnormal. (and is screaming a good portion of the time.) Drs have ordered an EKG, (heart measurements) that will be taking place shortly to determine why her heart is acting the way it is.

We have requested(in love) and nurses have suggested no visitors today, due to the delicate circumstances.

Thank you for your continued support & prayers,

Mark

Evening Update from Mark-Wednesday

Kaiya is sleeping right now in her crib. (Yes, she is no longer in a big bed but in a crib her size.) Still in the ICU, closer and closer to moving to the regular pediatric floor.

Although today was somewhat stressful for both of us, there were several positive things that happened:

*Heidi was able to successfully feed Kaiya a few times.

*EEG results did not show any seizure/stroke activity, the jerky movements seem to be a result of coming down off of the heavy meds she has been on for the past 5 days. Dr explained that it is similar to a drug addict coming down in detox. She is currently on valuim (sp?) to calm her nerves. Perhaps I can sell them on giving me a dose???

*The throwing up of stomach bile seems to have subsided.

*Eye doctor visited today to look at Kaiya's eye. Gave her some eye drops to dilate the pupils so he could get a look at what was going on deep in the retina. (This may be skewed, so sorry if my interpretation is not accurate.) He had some glasses that allowed him to look deep into her eye almost to her brain. His diagnosis was that due to the heavy inflammation in her head/brain, she is suffering from cerebral vasculitis. He says that this inflammation will subside eventually, and chances of improvement are positive. Can't say HOW MUCH it will improve, but he feels that it will get better than the current condition, which we are thankful for. Says it will be a long recovery.

Please continue to pray for:

*Left eye/left side of her face.

*Enough progress to get us out of the ICU.

*Patience as we wait for physical healing. We are first and foremost thankful that Kaiya's life was spared. It is very difficult, however, for both of us to see Kaiya in continued pain/struggle with the movement in her face & eye.

*A peaceful night.

Can't thank everyone enough for the continued support. Very meaningful to us, words can't express.

Mark

Wed 5pm-Mark

Seem to be taking a couple steps backward. Kaiya is making some very odd body movements in a jerking fashion. They are currently doing an EEG to see what could be going on. Could be a variety of things, from "coming down" off of the heavy drug regimen she was on to seizures in the brain.

Please continue to pray for her during this bumpy time.

Mark

Wednesday

Sorry I haven't updated for awhile. A little sleepy over here on the 8th floor.

PLEASE keep praying for that stupid 3rd cranial nerve. Her eye is not seeming any better. Heartbreaking to see her one big, beautiful eye and the other one completely shut and lifeless.

We were originally going to be moved to the pediatrics floor today, but then she had a little no breathing spell. They have put her back on oxygen and will keep her here at least another night depending on how she tolerates that.

I started to feed her again today. Just once. Didn't go so well...but baby steps, I suppose. They have stopped her feeding tube in the day and will supplement at night. Please pray that begins to work more smoothly.

She also is seeming to startle VERY easily. Just doesn't seem comfortable.

Thanks for your prayers. We need them more than ever.

Bumpy Landing

I felt like for the last several days we were circling the airport, and today we made a bumpy landing.

While I am immeasurably grateful for Kaiya's life and her being here with me, it is still so hard. She has been vomiting stomach bile and crying the most sad, raspy cry. She has seemed very agitated. Thankfully she is now sleeping peacefully in my arms. But my how it hurts to watch your baby hurt. At least before she was sleeping peacefully-

I also had a bit of a crash today. Sweaty, shaky, and exhausted. Got a little nap and some protein in and feel better...I AM taking care of myself, but can't imagine too many mamas that would want to leave at this point. She seems to only be peaceful when I hold her.

This will be a long road. But I was reminded today of Job saying, "shall we accept good from God, and not adversity?" Oh how God has been good to me. So during this process, however long it takes-I will continue to praise his name..and accept this adversity as a tool for change.

Thankful for each of you!

Good news from Dad

Happy to report that Kaiya is in Heidi's arms right now. The breathing tube was removed with no real complications, other than a little bit of a raspy voice from having it in there for 5 days. We are very thankful that we have taken this important step towards recovery. Still lots of tubes, but happy when each one comes out.

Looks like we will be in ICU until Thursday, and then be moved to a regular pediatric floor. Dr's are continuing to monitor Kaiya's progress. Brain inflammation, left eye/no response on left side of face remain serious issues.

Nobody has told us this in certain terms, but I feel safe to say that Kaiya will survive, which we are very thankful to God for. We understand the risk of complications, but we continue to pray for a full recovery. Our hope is to bring Kaiya home on Christmas day, which the day she will receive her last antibiotic treatment.

In addition to Kaiya, please keep Heidi in your prayers. She is starting to feel sick from all the stress/lack of sleep (my personal medical opinion) from the past 5 days. Trying to get her to sleep, but the Mom side of her wants to spend all the time with Kaiya.

All in all, we are very thankful for the recent progress. Thank you to you all for your continued prayers/support/notes as we continue down the road to recovery.

Good Morning, Sunshine!

Thanks for your prayers in the night. She got one dose of Tylenol and hasn't spiked since. So thankful! I think I am going to be a little paranoid about fevers from now on. I'm typically not much of an alarmist. That might have been the old Heidi. :)

She seems MUCH more awake this morning...her right eye is op en and she is moving around. So sad to see her left eye still completely lifeless. That's going to be more difficult to endure now that she is not constantly sleeping.

Hopefully they will extubate her in a little while. My updates may drop off because I don't think I'm going to want to let go of her once I get my hands on her.
Hopefully she and I can cuddle during The Biggest Loser Finale tonight. :) I will keep you posted.

Love,Heidi

if anyone is up now...

she is spiking quite a fever. please pray.

Pictures

Put a few pictures up...we have struggled a lot with whether or not to take them, but since this will be part of the story of her life, wanted to document a little. Also, for me it's nice to picture where people are.

No more cute blankets tonight though as she had a big bleed from the line in her upper thigh. (arterial line) That was scary and yucky, but they ended up removing it.

She hasn't had any sedation since 7 this morning, but has remained very out of it-seemingly asleep. They turned the ventilator down again and she does seem to be taking a few consistent breaths above. The hope to remove it tomorrow.

Thanks for being such an encouragement to us through your comments and bible verses and love. It's hard to watch her silently cough and struggle. Please pray that I can deal with that-I know she needs me but it's so so hard to watch.
God is so good, much to be thankful for today

MRI

MRI results were basically the same as the first time...with a little more fluid than there was originally. Haven't heard from the ped. neurosurgeon yet who ordered the test, so I'm not sure what that means in terms of needing it drained. Hopefully that won't happen.

Thanks to those of you who asked about her eye-it's EXACTLY the same. Not responsive, blown pupil, etc. There is much talk about it being related to the 3rd cranial nerve. I don't know what the heck that is-but there is a specific title you can pray for. :)

Big huge thanks to my friend Kara for organizing lunches and dinners for us at the hospital for the rest of the week..and the Grand Rapids people who responded to her "ad" on this site to help. We so appreciate it!

Thanks for sticking with us. I know it's easy to get wrapped up the first few days and then (because I'm guilty of this myself)-get back to life. I feel like we have continued support through each of you and I can't thank you enough.

Hello from the 8th Floor..

here's what's up this morning:
*just took her for another MRI. a new neurosurgeon wanted her re-checked before they cut sedation to try and increase her breathing
*still "riding the vent"...no good-she really needs to start breathing on her own (which is why they ordered to cut her sedation, which was overridden by the neurosurgeon until they get MRI results)
*chest x-ray still hazy this morning

We have had the same 2 FABULOUS nurses, Heather and Amy for a few days (can't remember, I haven't been outside since Thursday:)). Heather was supposed to be off today before her bridal shower tonight, but picked up a shift to come in today and be with us. She said she had checked the schedule and we didn't know anybody on today so she wanted to be with us. So sweet of her. LOVE this hospital.

More soon!


})

Goodnight Post

More good things about today:
1)Kaiya has had the same nurses the last 3 shifts and they have figured out how much I love Diet Coke and keep me supplied. (and take REALLY good care of her, too :))
2)I got to eat peanut butter and jelly and chicken strips.
3)My sweet girl is still here with me...the more I hear about the severity of her condition upon our initial arrival, the more I realize what a gift that is.

Prayer Issues:
1)Her lungs. They turned the ventilator down and she has not tolerated it quite perfectly. Her labs have been a little off and so this delays the removal of the nasty tube from her. Praying against pneumonia. Dr. said probably some air sacs have collapsed. I really want the ventilator gone because then I can hold her.
2)Her eye. You already know all about that.
3)That Ava (who is being so well cared for and loved by my sister and her family, an amazing gift and weight off my shoulders) will be resilient and not too sad during the next still almost 2 weeks of upheaval. The best case scenario at this point would be getting discharged on Christmas Day. That's a long time to try and mommy two girls in different places! I need wisdom on how to love Ava most and upset her the least.

Mark went home tonight because, well, let's just call a spade a spade. We are not the skinniest people in town and that vinyl smaller than a twin bed pull out thin blanket chair just isn't the best for us. He didn't want to leave. He is such an amazing Dad and has totally rallied through this. I am thankful the Lord has kept us on the same team. I think it's easy in crises with children struggling to struggle with each other. I still think he's the best. :)

Thank you my sweet friends whom I know and don't know. I am thankful for your part of our story..it wouldn't be the same story without you.

Sunday Night

One of the saddest things is that she doesn't smell like a baby right now. Is there anything better than the smell of a baby and the feel of their sweet little heads?? She smells very clinical and sterile and not like my baby. No fun.

The things that are keeping us going: all the tests have had mostly positive results. CT scan, MRI, spinal tap...

Sorry for the limited updates today, it's just that there's not much to update. We just heard about a "hazy" chest x-ray. The respiratory therapist came a few minutes ago and tapped all over her chest to try and break up the fluid in her lungs. Of course pneumonia is always a risk.
At Thanksgiving Ava was watching Praise Baby and the song "Blessed be the Name of the Lord" was on. I was in the car with Mark and my sister Laurel and when they sang the part-"he gives and takes away"...I said to them, I hate that part. It gives me a knot in my stomach. I think I might have needed to learn a lesson. The next line is-"my heart will choose to say, Lord blessed be your name". Definitely choosing to say that.

Please pray that Mark and I stay healthy, I feel a little head-achey-and with such little sleep, I don't want us to get sick.

More soon. :)heidi

Fix My Baby!

I'm stealing that from my friend Carrie (http://braydenandmommy.blogspot.com/), who has spent countless hours in hospitals waiting. More than I ever will. And that's really what you want-and so often, what you get. I think about a normal visit to the pediatrician, and basically that's what you are asking. Fix my baby. And usually they do. Whether it's a virus you have to ride out or an infection for which you get to syringe orange amoxicillan (sp?) into their mouths and call it candy...usually your baby is fixed.

Not the case here so much. They are trying so hard, but nobody knows like when the orange bottle is gone that life will be back to normal. And that sucks. This is awful. Lest you think I am too strong! :) As many of you know and have shared, watching your helpless sweet baby who was smiling and cuddling with you just days ago-in a huge bed with more tubes and machines than she should EVER have...is just nothing but heart wrenching.

So THANK YOU...thank you for writing comments to encourage us and tell us we are doing a good job when it seems overhwhelming. And thank you for praying along with us. Or maybe even sometimes for us.

Nothing new to report this morning, except she did pee on her own! Hooray! Besides that her precious night nurse got her another cute, matching blanket so since she can't be dressed in her cute clothes, at least she has some nice blanket action. I am continually amazed at the people in this hospital and immeasurably grateful for such wonderful care. I also feel badly for anyone who doesn't use my pediatrician. To say their office has gone above and beyond is a gross understatement.

This has been a long post without a lot of information! The prayer requests remain the same so far this morning:
*left eye
*weaning off the ventilator (and for me during that process, i don't even look during exams bc i hate seeing her messed with. i know she will be upset and restless, and i have a knot in my stomach just thinking about it.)
*The LP culture to show no remaining bacteria in the spinal fluid
*The fluid on her brain to reabsorb
*COMPLETE HEALING!

Our God IS mighty to save. I love that song..I love that concept. So thankful for his comfort and unshakable peace during this hard time. We will let you know of anything new to report. So much love to each of you who have taken the time to let us know you are there.

Lumbar Puncture

(I don't like to say Spinal Tap because it reminds me of the movie.)

The initial report from the 2nd lp is encouraging. The fluid WAS still cloudy, but that's not necessarily abnormal given the severity of illness. The good news is that it was thinner than it was the first time, and the protein level had dropped by half. (I guess that's good. Amazing how you can feel like a person of normal intelligence until you start listening to all this stuff!)
The main concern, again, is just the left eye. Aside from the pupil being non responsive and large, the eyelid is very swollen. Asking God to give the doctors wisdom as they continue to try and figure out that little bit of the puzzle.

Another big prayer request is her tolerance as they begin to wean her off the vent. She is taking some inconsistent breaths over the vent right now, but nothing stable. They will have to lower her sedation as they work towards this goal (which won't be for another day or two ultimately). Obviously less sedation is likely to make her uncomfortable, agitated, and annoyed at the tube in her throat. (and in pretty much every other hole)

Also, they just took the catheter out. Please pray that she can begin to go to the bathroom on her own. She was making lots of urine, so hopefully her body will remember how to work!
I must say-at the risk of sounding obnoxious-I do not feel like I ever took one day of Kaiya's life from conception to today for granted. I felt so blessed at my easy pregnancies, and oh how I love my babies. I have wanted nothing but babies since I can remember. (I think it started with my first Cabbage Patch, Carlotta) While I think Kaiya is going to be with us for a long time, I am very thankful to be sitting here with no regrets of the first 9 weeks of her life. (thanks for being patient while I use writing as therapy. :))

Hope, according to Webster's, means "to desire with expectation of obtainment". And according to the bible-"..as for me, I will always have hope. I will praise you more and more".
I will continue to praise him! Thank you for hoping with us.

2nd spinal tap

Neurosurgeon just gave the OK for a second spinal tap. This rules out any major complications that could occur due to the swelling in the head, which we are thankful for!

Now we are praying that the fluid that is drawn from the spinal cord is bacteria-free. We just left the room, spinal tap should take about 45 minutes. Thankful that Kaiya is sedated enough that she will not feel too much pain.

Ventilator has been gradually reduced from 19 breaths per minute to 15, in hopes that Kaiya will start to breathe on her own. Another prayer request at this point.

We will send an update as soon as we hear results from the spinal tap.

Thanks, Mark

From Mark-10am Saturday

(I noticed in Heidi's last post her comment about me taking up too much of our little bed last night....funny, somehow she managed to remain in control of the very large blanket that we had, despite our close proximity.....:))

The Neurologist just came by to share his interpretation of the MRI from last night.

We are very thankful that:
*The brain tissue that controls thoughts & motion looks to be normal.
*No evidence of a stroke, which could have been a negative reason for her left eye's lack of reaction to light.

A Neurosurgeon will be coming to look at Kaiya today, to determine if the excess fluid on the brain is continuing to build up, and if it needs to be drained. We are praying that this is not the case, and the fluid will "cycle back through" the normal way, and that the inflamation will start to subside. If the Neurosurgeon determines that the fluid does NOT need to be drained, he will schedule another spinal tap to analyze the current status of the spinal fluid, and if it is still being clouded by bacteria. If she needs to have a spinal tap, we are praying that there will be no complications with the procedure, and that the result would be clear spinal fluid. Lots of variables on this one.

Still of major concern is the left pupil's inability to react to light. Glad that a stroke has been ruled out, but not sure what is inhibiting the optical "motors". Could be a variety of things, including the pressure right now in her skull, damage to the optic nerve, etc.

We thank you for your continued prayers, notes of encouragement, voicemails, emails, etc. Very meaningful for us to read & hear from you.

Day 3

I really have nothing new to say this morning. She had a good night and Mark and I had a fabulous time sharing the pull out vinyl chair for 1. (I thought he took up too much room in a king sized bed!)

Kaiya is getting nutrition now through the NJ tube, so pray that her system will correctly process the food. They wonder if she had a little stroke, which is causing the eye problems. Please continue to pray for that left eye...Also for her breathing, that as they think about taking her off the ventilator in a few days-her body will be able to respirate properly. (this won't be too soon...but proactive prayer, right?) And of course, very importantly, the fluid on her brain.

A big huge thank you to all the people who have given to us over the last few days. Thank you for coming to hug us even though you can only look through the window. A special thanks to my sweet bible study leader Kate-who was here basically as soon as we were on Thursday and stayed with us, and since has been the angel of food. Stopping by quickly with yummy snacks and a hug. (um, Blue Diamond Brown sugar cinnamon almonds?? YUM!) Mark's family in the area has been amazing. And thanks to the people who aren't here but praying for us. How humbling.

As I am up reading this morning and watching my sweet girl in that huge bed, the following verses just kept coming to mind. Love this chapter (Ephesians 3)-and have often prayed it for others...I don't like to "name it and claim it"...because God is infinitely wiser and his plan is better than my selfish desires, but I do believe that he can do more than we would ever imagine. I'm believing that he will do that for Kaiya. How that looks, I don't know. But I'm trusting him.

" And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord's people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. "

Love to you...
Heidi (and mark)

MRI Results

Am I over-updating??
MRI looked overall ok...at least that's the preliminary thought. The pediatric critical care doc looked but they haven't been read by the neurologist or radiologist yet. While there doesn't look to be any swelling of the brain, there IS some fluid on the brain that does not look good. The prayer: that her body would reabsorb this fluid instead of it continuing to collect, which I guess is likely.

Also, her left pupil is still large and completely non reactive. This is scary. Those are our two big requests of the evening.

I can't wait to hold her. She is so beautiful even covered in tubes and tape.

Friday Night...by Heidi

They just took Kaiya down for her MRI. It was a scary process as the 500,000 dollar piece of equipment/space pod to take her down in was not working. They didn't realize that until after she was in it-and couldn't get the ventilator going. Thankfully the dr. on tonight was close by-came quickly to bag her and do the breathing by hand. They eventually took her down "the old fashioned" way, in her big huge bed.

Please pray that the results from the MRI are encouraging.
Not much other news today. She has remained stable as well as her vitals, temperature and temperment are concerned. She has been resting very peacefully. Hopefully the moving/MRI process will not cause her too much stress or jostling of her brain which is really needing to heal.

Again, we cannot fully express how much the messages mean to us and encourage us. I am so humbled by the love and prayers for Kaiya.

4pm, Friday. From Mark

Neurologist just visited the room, after looking at the EEG results. Commented that the results were nothing out of the ordinary for this condition. Still some confusion on why her pupils are so different, and has ordered an MRI for this evening to take a better snapshot of the brian/spinal cord. Kaiya's temperature has stabilized, she is still in a medically induced coma.

In the meeting this morning, the doctors commented on how extremely aggressive this strain of bacterial menengitis was in Kaiya. Very quick to invade the blood and spinal fluid, we are very thankful we got her here in time.

Continuing to pray that:
*Kaiya will live
*There will be no long term brain damage from the swelling & pressure in her head
*Her body responds well to the antibiotics *Heidi and I will have patience as we wait for any results
*Ava will maintain normalcy without Mom & Dad. (This morning I went to Heidi's sisters house and was able to be there for Ava when she woke up. I fed her breakfast, and was able to spend some time with her before coming back to the hospital. She is in great hands with Kevin, Melinda & the boys.)

Thank you to everyone for the text messages, emails, comments, prayers & encouragement. You may feel far away but you are helping us through this time.

Luke 8:50

"But when Jesus heard it, he answered him, saying, Fear not: believe only, and she shall be made whole."

Rounds

The doctors just did rounds. (I have to say it felt a little like Grey's anatomy, there were residents, a chief, a big circle, etc.) The main concern right now is that her left pupil is largely dilated and not very reactive. This could be because of brain swelling, seizure activity, etc. They are going to do an EEG this morning and probably an MRI for more definitive answers sometime later. She had a few other problems in the night, oxygen level, etc. but overall her labs seem to be ok.

The dr. this morning explained how quickly and aggressive the particular strain of bacteria is. She was septic very quickly and we are just so thankful we got her here when we did.
Please continue to pray for:
*Her left pupil.
*Brain "injury" vs. "damage". We want injury which can heal. Please pray limited damage to her sweet little brain.
*Ava..
*Any signs of improvement-just so hard to see anything right now.

I want her to smile again. I want her to run around with Ava in the playroom we are making for them. I want to hold her and feed her look in her big, pretty eyes. But mostly I want to glorify God through whatever happens. So comforting to know that he is holding her when we can't touch or hold her ourselves.

Thankful we serve such a Mighty God. Trusting him for anything that happens. Thanks for praying with us.

Update from Mark-4AM Friday

Still waiting for Kaiya's body to respond to the antibiotics. I was just in the room a few minutes ago and her color looks a fair amount better than it did last night. Around 1am, Kaiya's pupils were different sizes, which indicated swelling on the brain. At this point, the pupils are closer to equal sizes which we are very thankful for. The dr's continue to say that it takes 2 days before we see any results or signs of improvement. One thing we have working in our favor is the fact that Kaiya is still so young, and the parts of her scull can move slightly to accomodate the swelling.

Thank you all for the kind words, thoughts & prayers during this difficult time. We know Kaiya is in good hands.

Sad Day

Kaiya woke up with a high fever around midnight last night. She had been immunized earlier in the day so after calling the dr. we were advised to continue to keep her on Tylenol and that it was probably a result of her shots. This morning she was pale, lifeless, and fairly unresponsive. We took her immediately to the pediatrician, who called an ambulance and took her directly to the pediatric intensive care unit.

She has been diagnosed with bacterial meningitis. We will be keeping updates on the care page provided by the hospital. The link is: http://www.carepages.com/carepages/Kaiya

There has not been a day since we first found out about Kaiya's existence that I haven't praised the Lord for her life. When I put her into bed last night, I walked out and said to Mark how thankful I was for her. She is a delight, a smile machine, and such a joy to us all. Thanks for praying with us that we will see her smile again soon...God has been so present with us today. We are trusting him for whatever happens, and praise Him for this sweet girl he has given us to take care of. Thank you for your prayers!

lord help the mister, who comes between me and my sister

right now, there ain't no room!

i love kaiya so much that i will hold her while watching sesame street.

then i will kiss her on the mouth.

ava has found smacking kaiya on the head is a successful tool to keep her crying.

so sweet and innocent. :)

Weekend Update

Ava played Moses.

Mark played basketball.

Heidi went fishing. (update: per several requests, fishing for the bow ava threw in the toilet)

We all decorated/excessively ate sugar cookies. (but more importantly, dough)

Leche con Jalapenos

Ok funny story. Not sure how many of you cut peppers much. Well, you should wear gloves. I ignorantly chopped away without them over Thanksgiving, until I began feeling the burn. This has happened to me before, I knew better, but thought it would be fine. Well, burning hands (that also burn your eyes, nose and lips when touched) are one thing in normal life. But entirely another when nursing a baby. I won't get into too many details, but while Kaiya WILL love Mexican food, she's not ready for her inauguration into jalapenos on her mouth yet. So...the only possible solution? Wear gloves while nursing. Fed my child 3 times in row with big old fleece gloves on. Oh, Heidi.

Once I realized the burn was coming, I had Mark finish the chopping. He felt badly so expressed his love through the jalapenos. :)

Gloves and nursing cover. A winning combination.

Kaiya is so delightful. She has started smiling up a storm. She must not know that she has had a runny nose and baby acne for the better part of her life.

This so captures Ava's personality. I love this picture.

Tucky, Migo!

There's really not a word Ava doesn't say or repeat at this point...which has prompted us to be a little more careful of what we say. "Oh my gosh" and "shoot" just don't sound quite the same coming out of her mouth. "Oh boy" is really cute though. :) Anyway-she learned the word amigo from Veggie Tales, and I repeatedly told her we were going to Kentucky for Thanksgiving. One day she combined them and it made me laugh...so Tucky Migo was the motto for this Thanksgiving!


The Originals :)

Oh how I love my family! 23 of us in one house for a whole weekend...no fights, lots of good food, I am so blessed with these precious people!

The rest of the fam... (sorry this is probably boring for most of you!)

Hanging out with Grandpa...

"I wonder if they would see if I smacked her on the head right now???"

Grandpa, Snow, and bake at 350 for 4 hours

Last week my Dad came through town for about 24 hours. There are not many in life so dear as this man. It was such a treat to have him and I love knowing that when he is holding my girls he is praying like crazy for them. We are so blessed to have such Godly grandparents for our babies!

Well here it is, folks, our first day of snow. I'm from Texas, so give me awhile on the "zipping up the whole coat, gloves, etc." part.

So last night I made chocolate chip cookies to take to bible study. But not this tray. This tray I just left in the oven to cook the whole time we were AT bible study. Mmmmmm! Thank you Lord for sparing us from a flood AND a fire!

Our friends Andrew and Nicole came over for brunch and I convinced Mark to use the Dom whatever that's been in our fridge for the entire time I've known him to make mimosas. I explained to him that obviously we have nothing large enough to celebrate so we might as well just mix it with some oj and have a nice treat. We took a picture to document the momentous occasion.

The 7 Things, Thing

Nobody really tagged me, except for in elementary school when I ALWAYS got tagged because I'm not very athletic. Anyway, I just wanted to put up a new post because I'm regretting that morning picture below. :)

1. I'm ridiculously boring. I'd like to just sit on the couch with a Diet Coke and a magazine and snacks (and preferably someone I like to be with) than just about anything else. Throw in an occasional shopping excursion and restaurant and it would be dreamy. (Not that I don't LOVE my life right now, but I'm just saying)

2. I have a great fear of running out of staples. Those include Diet Coke, ingredients for chocolate chip cookies, peanut butter, and shredded cheese. Weird?

3. I have found the new greatest hair product ever, and I have tried almost all of them.
This stuff is so cool, it makes your hair feel kind of gritty so you can move it around and poof it up. Flat haired people would not care for it, but for me-flat hair=fat face. So I love it.

4. There is not a lot I do really well (reference aforementioned athleticism)...but I CAN spell. I won the spelling bee in 2nd and 3rd grade. Yep. That's right. I struggle with double letter words like embarrass and stuff, but other than that-if I see a word spelled wrong it makes me shudder. (thankfully, when in doubt I have Abby and Katie to edit me :))

5. My two front teeth are fake.

6. I think Long John Silver's chicken planks are fabulous. Feel free to judge me.

7. See, I'm so boring I can't even think of a 7th thing. My oldest sibling is 19 years older, I make really good cookies, I don't wash my hair much, I don't know.

Hopefully I didn't spell anything wrong.

:)heidi

two babies...

I know there are people that have kids a lot closer than I did...(my sister in law has 2 sets under a year!) but the reality of two little ones is that much of the time we are holding both of them! no stand up shots here, but you could ask the people at bath and body about my skills carrying two through retail outlets. :)

so thankful for our two precious babies...

(yep, i look good in the mornings.)