Thank you for your Presence, Plates and a Perfect Package

We are continually reminded of Gods promise of enough as we receive little reminders of his care through those around us. Thank you to the friend who brought over a stack of plates knowing that sometimes you just need to break something. Thank you to the thoughtful family for a package of incredibly soft stuffed animals that unexpectedly arrived on a perfect day distracting the older kids. Thank you to a special friend who gets it for the presence and prayer.

Bailey is Doing Better!

Last week all of our kids, like most of the rest of the world, got upper respiratory infections. With the additional mucus Bailey ended up aspirating and was running a high fever. As a result of the fever she had prolonged seizures for a few days. We are happy to report that after a few rough days she is doing better. She is on an antibiotic and we are doing breathing treatments twice a day with a nebulizer.

we remember....

On December 9th, 2004 our dear friends Ben and Jaren Nash lost their precious first born son, Jack Benjamin Nash. Two days after this indescribably painful loss we sat with them in their living room listening to them share their story. They told us they could choose to become bitter or better, and they said they choose better. We have watched them live this out. Thank you for being so real and authentic, and demonstrating that in the most difficult of circumstances we can become better. We love you, we cry for you, and we remember.

Giving Thanks

It's been much to long since our last post. The last month and a half has definately had it's challenges. Bailey continues to have seizures, and still show many signs of discomfort and pain, she is also still struggling with sleep which means Matt and I are as well. Life has seemed incredibly difficult and dark for me personally, but I was reminded today just how blessed Matt and I are to have such amazing family and friends who continue to support us in this difficult journey. I am giving thanks for all of you, thank you for caring and loving us through this.

I pray that you will have a meaningful time of giving thanks for the many blessings in your life over Thanksgiving. We will try to post some more specific updates on how we are after Thanksgiving.

I choose.....BEAUTIFUL!!

I'm not the best communicator but none the less i wanted to share with you what God has been teaching me through my children and especially Bailey during the past weeks.
... On september 14th Bailey had her pediatric opthamology appointment. During our visit the doctor performed a series of tests on Bailey in order to determine how much her vision was affected by her brain injury. Unfortunately Bailey's vision has been greatly affected and she is considered legally blind. Although this wasn't a huge suprise to Matt and I, there is still intense sorrow that goes along with this news. I have felt discouraged, hopeless, angry, and sad that my precious Bailey may never see our faces, or smiles. Bailey will probably never taste ice cream, or eat strawberries, she may never be able to tell me how she is feeling, sing "Jesus loves me," or say "MOM," she will most likely never walk, ride a bike, or dance around with her brother and sisters. However, in the midst of this grief Bailey is giving me a new perspective and is showing me what beautiful really is.
...There are a number of moments throughout my day when it is easy to become frustrated. For instance when Carter and Mckenzie track in mud for the third time that day, or when they spill their spaghetti on the floor, or voice their strong will/opinions (which are typically different from mine) in very loud and passionate ways. Because of Bailey I realize there is beauty in these moments. Carter and McKenzie are able to play in the mud, they are able to eat orally, they can eat things like spaghetti, or ice cream, or strawberries. They are also able to talk and reason and express their opinions. As frustrating as these moments as a mother can be, I would give anything for Bailey to be able to do these things.
...Thank you Bailey for teaching me to see the beauty in things, and for helping me to become a better Mom! You are truly BEAUTIFUL!!

drops like stars...

*i wrote this entry in my own blog a couple of weeks ago and asked

heather if i could post it here...thank you for your authentic selves.  -ben & jaren

i have been profoundly impacted by my dear friend, 

heather and her story.  

her life.  her authentic self.

she and her husband have 4 children under the age of 4.  

one of her twin daughters suffered significant brain damage at birth.

life has significantly changed in their home.

i was able to sit across from her this morning at panera 

and listen to new parts of her story.  

not pretty parts.

indescribably difficult, painful parts.  

the kind of parts where

the words that start to describe it 

can do nothing else but take your

breath away.  

as i listened and grieved these new parts with her...in my mind i wanted

to insulate her...protect her from feeling any more of this ache.  and it 

hit me that if that was even possible, it would keep her from experiencing

some of the most intimate moments that she has had with her Savior.

i saw the most beautiful in her.  

she, in the midst of her sorrow was shining.

{and not the kind that is trying to be -optimistic, positive--blah!}  

it was a true shining all the way through. 

it permeated her.  

and i realized it was because i was seeing the Most High.  

i saw that He was meeting her where she was at...and she was letting Him.

i saw the genuine and the real alongside

seeing the most painful parts that she and her husband are now walking through. 

  

i guess that is why i am up writing this at 4:00 in the morning.  

i couldn't sleep-not without doing something

about my experience today...i couldn't let it go unnoted. 

she lent me this book...drops like stars by rob bell.  she mentioned that it was like a coffee table-kind-of-book and it would take no less than 30 minutes to read.

as soon as i got home, i opened it and read it.  

i couldn't put it down.  i gave it to ben and he said the same thing.

we could relate to it on so many different

levels.  

it is the most accurate to placing words and 

experiences to suffering and loss that i have ever come across.

if you are finding yourself in a place of suffering, or know someone else who is..this book may be a great gift for

you or someone you care about.

Development: Hers and Ours

Bailey had a six month neurodevelopmental appointment last week. Although we always long to hear good news the reality is that these appointments confirm what we already know in our heads but struggle to accept in our hearts.

Bailey continues to be on a developmental trajectory that will leave her severely and multiply impaired. In addition to an ongoing lack of head growth, she is beginning to exhibit many of the postural and tonal abnormalities that are typical for children with cerebral palsy. These patterns include increasing hypertonicity or tightness through her arms and legs and hypotonicity or low muscle tone in her trunk. She also is demonstrating clonus (a spasmodic alternation of contraction and relaxation of the muscles) that results in her ankles bouncing in a jerking motion. She is also "stuck" in many of the primitive reflex patterns that are typical for infants but then must become integrated to allow development of consciously controlled movement. As a result she continues to be unable to perform purposeful motor movements. She also continues to be unable to smile or verbally interact in an intentional way. The development of additional saliva as she begins to cut teeth has resulting in increasing difficulty for Bailey in managing her secretions. She often gags and chokes on the saliva and we have begun to use a suction machine to assist her with clearing her airway when needed.

Some of the positive developments include the addition of a new medication that along with the use of a feeding pump significantly improves her comfort with feedings. This also has helped her with sleeping and even occasionally napping during the day. Overall, in the past two weeks for the first time, she has had more comfortable days than days when she was in pain. This has been a tremendous blessing.

I personally often (certainly not always) feel a deep sense of peace in this time. In part this is because the tyranny of the immediate prevents too much deep reflection. But even more than that, it is the acute and daily reminder that this situation is so clearly beyond us. There is no illusion that we can control this situation. It just is. As a result it is easier to live in the present moment without fear of the future. Thank you all for your ongoing care and concern.
Sincerely,
The Mekkes

Canvas

Heather and I recently watched a message in which Louie Giglio states that, “God paints on a canvas that is larger than what we can see. Through a key hole the cross looks like a horrible mistake. Like God has lost control. But in stepping back and looking at the larger picture it is the most beautiful part of the story!”

This is such a beautiful and powerful visual picture. Although it sometimes feels like that door is locked and we are only left with the “keyhole” view, it is our prayer that the door would continue to be pushed open at least a crack. One way that we continue to gain a glimpse of the larger story is through the thoughtful words and support that we continue to receive from friends, family and even strangers. Thanks to so many of you for your willingness to enter into the messiness of life with us!

A quick prayer request. Bailey will have an upper GI tomorrow morning at 9:45 in which they place a scope through her esophagus, stomach and the opening to her small intestine to check for structural abnormalities that may be contributing to her pain with tube feedings. In preparation she will not be able to eat after going to bed tonight. Those of you with young children know how challenging a hungry infant can be so please remember her (and us). Also that we may know better how to make her comfortable during feedings.

if you would like to help...

there are 3 areas that we are going to concentrate on:

1. matt and heather's 9th anniversary is this tuesday!

* a phone call *a card *dropping off some flowers

*i can find out what restaurant they will be at-maybe we could pick

up their tab?

2. the kids

kimberly krampe had a great idea: to put "activity packs" together for them. heather plans out their activities for the morning and the afternoon...the kids would be so excited to open a new packet of activities-and/or snacks! if something like this is on your heart...please contact kimberly...kkrampe@live.com. she is happy to help with ideas too!

3. monday meals

there are some wonderful friends and family from up north that have been providing frozen meals...these have been so greatly appreciated by matt, heather and family.

i asked heather if there was a day that is harder to get a meal together and she mentioned that mondays are really difficult. soOoo...that's where this next idea came about...getting a fresh meal to them on mondays would be a huge help! if you are able to do this, please contact me, jaren....at greenappledesign@comcast.net . i will place you on the list to the side of this blog so that if you forget the date...you can check the blog!

thank-you so much for your concern and your prayers for the mekkes family!
this last stretch of time has been increasingly more painful for everyone...
your faithful prayers and love mean so much to them!

a quick update on bailey:

matt and heather have decided to put feeding therapy on hold for the time being. this has been a difficult decision...but, a necessary one. bailey does not have a lot of energy to even work towards her oral therapy...another piece of grief that matt and heather experience.

secondly, they met with bailey's pediatric neurologist...this doctor is encouraging matt and heather to use some meds that would act as a sedative for bailey so that she would not be aware of the pain that she is experiencing. as difficult as this decision is...it is one that will allow bailey to have better, less painful days. it will also allow her to sleep-which, she hasn't been able to do. she is up all day...maybe sleeping 30 minutes...and the nights are just as difficult.

lastly, matt and heather want me to express their gratitude for you, your love & your prayers. each day they rely on the portion that God gives them...
they are such amazing people...a m a z i n g .

when words aren't enough...

i'm on my knees this morning asking you

...our Creator...

to AMAZE us.  

because you are amazing and can do amazing things.

let the earth quake Father and AMAZE

us as you move in bailey's life.  i am holding

on to hope for my dear friends and their

beautiful bailey...that you will move.

You are the Great Physician...

You deserve our highest praise

and i continue to have faith

and believe that you will AMAZE us.

**please continue to pray for matt and heather...this past week-end was extremely difficult...  several of you have asked what you can do for the mekkes family right now...we are working on some ideas-if you would like to take part...please drop me an email and i will be in touch with you.

i talked with heather last night..my heart just broke again, listening as she shared news about bailey. she is such an amazing mama..so centered on what is best for bailey. i kept waiting to hear her talk about getting some relief..and she did, but not for herself or matt..but, for bailey. and i know matt is in that same mindset. they are in this fight for their child's well-being and are doing every single thing one could imagine to make sure she has the care necessary for each day. the heavens are clapping for these two...

a p p o i n t m e n t s

there are many, many doctor's appointments..and many still to come.
tuesday, bailey was in feeding therapy with heather,
she had 2 seizures in a matter of 25 minutes.
bailey continues to struggle through these sessions.
but, they continue to go and are praying for positive results.

s e i z u r e s
she is having more seizures..and, they are harder to detect-
which must be so frightening. each episode physically wipes her out!
the doctor's have increased her medications in order to be preventative...
please pray that they will be able to prescribe the correct amount-
enough to stop her seizures, but will not cause her more pain.

p a i n
with each feeding, bailey continues to be in a lot of pain.
there are 3 or 4 really hard days of feeding to 1 good day...
this alone brings much sadness and ache,
as matt and heather can do so little to relieve her pain right now.
she is scheduled to see her pediactric neurologist in 2 weeks.

t e c h n o l o g y
matt and heather's internet has been giving them some trouble.
your emails and responses to this blog mean so much to them!
comcast is going to be fixing the problem...so, they will
be up and running again soon!

June 16

It has been such a long time since our last post and yet it seems like only yesturday. I have struggled to know what to write. This last month has held some of our darkest days, and also some of our brightest. Bailey's pain with feeds progressed to almost every one and was very extensive. We have tried a few different medications to help control the pain level and we feel like we have found something now that may be helping. We are so incredibly grateful that Bailey is more relaxed and comfortable. We still have hard days but have had a few good days lately. We are learning not to take the good days for granted, and continually praise God for them.

Life has been very busy with appointments lately. Bailey has feeding therapy twice a week for the next 12 weeks, and has also started her physical therapy, and occupational therapy with the Early On program. As of now, they have showed us different excercises to do with Bailey at home to help her progress, and to reach her potential. Please pray that Matt and I would have chunks of time during the day to do these different excercises with her.

We wanted to share some of our "bright" moments as well. Lexi is cooing a lot and always has a smile on her face - her middle name, JOY is so perfect for her. Bailey has also cooed a few times and I have seen her smile once, which has been such a gift. I continue to hold on to HOPE that we will have many more smiles and a lot more cooing.

In closing, I just wanted to share one statement with you that has been such a source of truth and comfort in the past few weeks. Jesus Christ is not my security against the storms of life, but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.

Prime Time

Bailey has been increasingly uncomfortable each night from about eight o'clock until sometime in the night :) On a good night this sometime is around 11:00. On a bad night it is not :o By increasingly uncomfortable I mean screaming and crying for hours at a time and having traces of blood in her stomach. We are working with several different care providers on discovering what contributes to her discomfort. Possible culprits include medications she is on, milk allergies, something related to the placement of the feeding tube, and/or general colic. Because of a sugical procedure reflux is not a likely canidate for the problem. Bailey, like most two-month-olds, has not been cooperative in verbalizing what exactly the problem is ;)

Yes we have tried car rides (which sometimes helps), putting her in the car seat near or on the dryer, in the swing with various "white noise" and countless other things. Please remember us during the "prime time hours."

Early On

Bailey had her first visit with "Early On" Wednesday of this week. Early on is the early intervention program run through the intermediate school district for children from birth to age three who have disabilities or developmental delays. As a part of the assessment process specific goals related to development are established and then services are put in place to assist with helping Bailey to move towards these goals. The individualized plan is reviewed and modified periodically as her needs change. In the next month Bailey will have an in home evaluation from both a physical therapist and an occupational therapist to set more specific goals.

Vision

Bailey and Alexis both had their two month check ups and continue to grow. Bailey is now over 9 pounds. One of the significant concerns that the pediatrician has for Bailey is her vision. Because it appears abnormal she will be seeing a specialist in the next couple of months to perform a more comprehensive evaluation.

Feeding

Bailey had her swallow study and she does continue to aspirate. In a normal swallow as food reaches the back of the throat the airway is closed off to prevent liquids or food from entering the airway. When Bailey attempts to feed she does not adequately close off her airway to protect against ingested food. She is also a silent aspirator. We have all experienced things going "down the wrong pipe" and know that a coughing fit follows. As a silent aspirator Bailey does not have this protective cough response. Instead if she were fed orally at this time she would be at high risk for respiratory complications secondary to this aspiration such as pneumonia. One of the things that can be done to prevent this is thickening liquids so that they are less likely to "go down the wrong tube." Other strategies including how she is positioned during feeding can also help. She has been referred to feeding therapy and will start in the next couple of weeks. For now she will continue to need to be fed through the G-tube.

Monday, April 6

Last week Tuesday Bailey had another EEG to check for seizure activity. On Friday we met with the Neurologists to discuss the results of the test and further treatment. The EEG did not show any seizure activity during the test so the Neurologist decided to slowly take Bailey off one of her anti-seizure medications. Bailey will always be at an increased risk for seizures and will most likely remain on anti-seizure medications permanently.
This week Bailey has a swallow test. This will tell us if food is going into the stomach or the lungs. Please pray that Bailey is able to swallow correctly and that we could begin feeding therapy to possibly feed her orally.
We can't begin to express our thanks to everyone for the many ways they have surrounded us during this difficult time. We are so grateful to know that we are not alone, God continues to show us love through people like you. Thank you.

{heather has lexy & matt is holding bailey}

this family is amazing.

if you have spent any time with them,

you know exactly what i mean.

they are real and the pain is indescribably deep.

and yet there are moments of joy that run alongside their grief

as they experience these two precious babies as a

miraculous addition to their family.

the road is a long one ahead of them.

they continue to feel your love and support and are so appreciative.

they have adjusted well to being home.

and with 4 under the age of 4...this is quite an adjustment!

bailey is still not regulating her body temperature yet...

it is something matt and heather are always checking.

her feedings seem to be going well.

she is gaining some weight-slow, but sure.

it's amazing to see these sweet girls side by side...

cuddling next to one another with one big *sigh* once

they finally get settled in.

they love each other.

they need each other...

even at this young, infant stage of life.

they need each other.

**bailey has another eeg on tuesday morning.

please keep this appointment in your prayers.

we are praying for a miracle...that the doctors will

see some improvements as they compare

this new eeg with prior ones.

     {lexy has her eyes open and bailey is sleeping}

{bailey is on the left & lexy is on the right in these 2 bottom photos}

A Little Elbow Room!

I'm home with my sister at last!

Bailey came home on Wednesday afternoon and the past few days have gone well. She has been able to maintain an adequate body temperature. Alexis and Bailey had check ups with our pediatrician today and both are gaining weight. Alexis 6lbs at birth is currently weighing 7lbs 3oz and Bailey has gone from 5lbs to 6lbs. The medications Bailey is on have effectively been controlling the seizure activity. She will see three additional doctors (surgeon for a post op follow up, pediatric neurologist, and developmental pediatrician) and will be evaluated to begin services with Early On over the next three weeks. Thank you all for your continued kindness and prayers!

Bailey is home with her family!

Bailey arrived home on Wednesday!
We will have more details to come...

meetings...

today is going to be filled with meetings for matt, heather & bailey.

many specialists will be in and out...showing

matt and heather the best way to care for bailey once she is home.

yesterday, they worked with bailey's feeding tube.

they were able to do 2 feedings-both went well. 

the doctor wants them to add a supplement to

the breast milk so that bailey would be able to gain weight.

  

matt and heather are both ready to bring her home...

to unite her with her twin, alexis, and siblings mckenzie & carter!

however, the doctors would like to see bailey regulate her 

own body temperature first.  she is unable to do so right now.

please pray that this next step would happen so that

she would be able to be home with her family!

Monday, March 9

We continue to be so grateful for the prayers, kindness and generosity of so many. Bailey is recovering well from both the surgery to place the feeding tube and the procedure performed to prevent reflux. The feeding (PEG) tube is in place and she is back to receiving full feedings and medications through the PEG tube. The central IV line was removed last night. Another EEG will be done on Tuesday as the neurologists determine if she will be coming home on one or two anti-seizure medications. We hope to be able to bring Bailey home to be with the rest of the family by Wednesday of this week. I am also extremely grateful for the generosity of my employer and several co-workers that will allow me to be at home over the next two weeks as we make this transition.

bailey's surgery

thank you so much for all of your prayers!

bailey's surgery was successful and she is starting

the recovery process.

the doctors and nurses are trying

to make her feel as comfortable as possible.

please pray that they would administer the

correct pain medication so that bailey would

not be in any pain as her body starts to heal from this surgery.

matt and heather will have a more detailed

update later this afternoon.

bailey's surgery is on thursday

{surgery}
bailey is scheduled to have surgery tomorrow morning.
they will be placing the feeding tube in her stomach.

she will be on a ventilator and will be sedated all day.
please pray that this surgery will go well

and that bailey would recover quickly.
matt and heather covet our prayers as they walk through this day.

{health}

please also pray for the health of matt, heather

and the rest of their family.

when they are sick, they are unable to see bailey...

matt and carter have both been sick

and have had to stay home the last couple days.

prayers for their health are appreciated -

especially during bailey's surgery & recovery time.

{hope}
it is matt and heather's hope

that they will be able to bring bailey home next week!

thank you for your earnestness

on behalf of the mekkes family.

they feel your support

through your prayers, love & concern for them!

hello world!

time to eat?

this is how i am fed right now. 

so far, i have been digesting my food really well!

it takes about 10 minutes for this to go straight to my tummy!

hands

bailey holding mommy's hand

bailey-holding daddy's hand

mckenzie turns 4 on monday!

{mckenzie is turning 4 this monday!

if you would like to send a card

and need her address...

please email me and i will get that to you right away!}

a quick update...

matt is heading back to work this week.

please keep both heather and matt in your prayers

with this upcoming transition.

also, matt and heather are so grateful

for your cards, hospital visits, meals

and phone calls...

they may not be able to return

many calls right now-but, please know

that each call, each word spoken from your

heart means so much to them.

bailey

please continue to pray for bailey that she will learn how to suck...the surgery to place a permanent feeding tube is coming up this week and our prayer is that she would be able to learn and perform this task before the surgery would need to take place!

thank you for your faithfulness in praying for bailey and the rest of the mekkes/mccloud family.

we will have some photos of bailey up soon - so that you can see this little sugar!

hospital pictures of Alexis

Joy and Pain

Thank you friends for the love and support that you have given. Heather and I wanted to update you all on how the girls are doing and to ask for your prayers:

Friday: Heather was in our doctors office on Friday (February 20^th) for a routine non stress test the week before our babies were to be delivered. One of the babies started to show signs of distress with a heart rate that would periodically drop. The doctor performed an ultrasound that showed she had very little amniotic fluid and in addition had her umbilical cord wrapped around her neck three times. Although these did not require an emergency cesarean delivery it was time for us to meet our girls face to face. After months of waiting and anticipation our beautiful baby girls arrived. Alexis was born first and weighted 6 lbs. Bailey was born two minutes later and weighed 5 lbs. Bailey needed a little encouragement to begin breathing on her own but this is not uncommon and she was doing well. Both the girls got the usual care complete with their first baths, foot printing (they actually fit on the cards this time), bracelets and cuddle time on one well deserving mom. After a few hours of holding the girls, giving kisses and taking pictures we checked the girls into the nursery for a few hours of sleep.

Saturday: At four in the morning Heather and I were woken by the neo-natal doctor (Neonatologist) who told us that the nurse had observed some unusual things with Bailey and that she had been moved to the neonatal intensive care unit (NICU) because she was suffering seizures. The medications that she was given over the next several hours to control the seizures sedated her to the point that she was no longer able to breathe on her own and she was intubated. Over the next few hours she was transferred from Saint Mary’s Hospital to Spectrum Health NICU where they would be able to perform an MRI with the breathing tube in place.

Sunday: During the first day that we were in the NICU at Devos Bailey had a CT scan and an EEG which both seemed to suggest that things were going well. The EEG suggested that the medication was controlling the seizures, and the MRI suggested that if there was brain damage that it was most likely mild.

Monday: Both the girls seemed to be doing well. Heather and Alexis were discharged from Saint Mary’ Hospital. Bailey was adjusting to the medication and was able to breathe on her own so the tube was removed and Heather was able to finally come in see her for the first time since Saturday. Late on Monday night Bailey was finally taken for an MRI which would probably give us a clearer picture of the extent of the injury she had sustained.

Tuesday: A series of doctors including the pediatric neurologists reported the MRI showed that the extent of the brain damage was much more extensive than was originally thought. The neurologist believes that within the week preceding the delivery Bailey suffered a massive brain injury. This injury was primarily the result of the twin to twin transfusion syndrome that had been going which was complicated by the umbilical cord being wrapped around her neck. Bailey shows extensive damage to every part of her brain with the exception of the brain stem. As a result Bailey will most likely never walk or talk and developmentally will stay in an infantile or pre-infantile state.

While the immediate urge we feel is to pray for a miraculous healing of Bailey, and we certainly do, perhaps the miracle has already taken place. Heather and I are able to hold this beautiful baby girl who has survived so much as well as her sister. Our God is good. Not in a cliché way but in a way that allows you to breathe that next breath. Through the pain we cling to his promise not to make level paths before us, but rather to make our feet capable of standing upon the heights.

Heather and i have thought often of our wonderful friends who said that hard things can make you bitter or better, and we choose better. We have seen these same friends not only pledge to be better, but also live out this pledge. This is our desire. Today through the pain and grief that comes with the loss of the dreams of an expected future we choose better. Tomorrow we will try to choose the same. We reserve the right to choose moments, hours or even days of bitter but our God is good.

As you pray for us, please remember a few specific things. First, that Bailey would learn to suck so that she may be able to take food by mouth instead of need a feeding tube permanently. Second, that she would develop the ability to regulate her body temperature as this can be a common complication of this extensive of an injury. Third, please pray that we would have the strength and ability to live in the present instead of fearing the future. Fourth, please pray for McKenzie and Carter, that they feel loved...as much of our time in the next month will necessarily be spent caring for Bailey and Alexis.