We're Okay

Thank you everyone for your outpouring of love, support and prayers. It means so much to us to read your comments and really be carried daily by your prayers. 

We are going through something no one should have to endure. Child-sickness is horrible to hear about, but when it's your child it takes over your whole being.  We wake up and go to sleep thinking about it. And every time we look at sweet Hannah. 

...so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again.   1 Thessalonians 4:13-14

WE HAVE HOPE. We know who goes before us and we long for His return, maybe even more now than ever before. 

So as Hannah's first Christmas approaches we are thankful for all The Lord has given us and the hope of what's to come. It's more than I could have ever imagined and my heart is full even in the midst of hard news. 

              Merry Christmas to all!

Hannah Update

Thanks everyone for praying for Hannah and her neurology appointment. It did not go as well as we prayed for. It was not all bad but there was not a lot of hope that the doctor gave us for things to be normal. He told us that there was a good chance she would develop epilepsy. In fact a 70% chance she will have some degree of epileptic seizures. He stated even though she has developed correctly so far we will see delays. How severe he couldn't say. As I rewind the conversation in my head I notice he continually chose not to say hopeful things. Basically, he compared her brain damage to a scar that would never heal. How bad that damage is may take years to reveal, but don't expect normal. 

This information is what I'd read on the internet, but I just long for normal. We purposely prayed daily during Ellie's pregnancy for a normal, healthy baby.  This is not normal though, and I am just sad. I think about my loss and I feel guilty because Hannah's loss is greater.  It seems there are too many thoughts to take captive right now.  Based on her brain the doctor believes that Hannah acquired the virus in late second to third trimester. He said it was acquired randomly somewhere in Louisville. Ellie and I were already struggling with our move to Louisville because of the great community we had in Austin.  Now it is hard not to say:  "If I wouldn't have moved my family to Louisville everything would be normal". "Did I miss something?" "Did I manipulate this move and not listen to the Lord?" "Am I Jonah or Job in this story?" I know that even if we were not meant to be in Louisville it does not matter. I know that looking back is not what God wants. 

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11

I also see where I put my hope. My hope right now is in "normal" whatever that is. Ellie sent me a blog yesterday here . It spoke to us and the writer, who just discovered her husband had cancer, went through this verse “Blessed is the man who trusts in the Lord, whose trust is the Lord. He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit.” (‭Jeremiah‬ ‭17‬:‭7-8‬ ESV). We feel the heat and my trust is wavering. I seek out and pray for this trust as the drought is here.  I pray that our trust and hope is in the Lord not "normal". 

The verses for the day on the blog were some verses I have been praying through. 

Psalm 46:1, “God is our refuge and strength, an ever-present help in trouble.” (NIV)
Psalm 118:14a, “The LORD is my strength and my song.” (ESV)

Please pray, as Ellie and I don't feel very strong right now.  Pray that we would feel His strength. 

6 month challenge!

Can you see them? They are really tiny, but Hannah got her hearing aids Friday!

Here's a better picture (knocked out after our long day). Pretty pink for my girl.

It's SO much fun to hear my daddy's voice!

We've had quite a few adjustments over the last few days. Hannah has taken them like a champ, but she's tired. Hey, we're all tired!  But with the hearing aids (and mama constantly adjusting them) and anti-viral meds she's had a lot of change. 

She started the meds Friday afternoon and is getting the dose 2 times a day for 6 months. So far it's hard to tell if she has any side effects. She does seem to be a little more fussy, like her stomach hurts or something, but it's hard to tell. We are praying she will adjust and can calm down a little. 

A sweet friend of mine told me she and her kids will be praying for Hannah everyday for the next 6 months of her treatment. That really spoke to me and gave me the idea to extend that challenge to all of you. 

Will you pray for Hannah everyday?(today through June 7, 2015). Her 9 month birthday :). 

We believe The Lord can heal her brain and ears and prayer is what we need. 

Here are things you can pray (+ anything else you think of). 

1. Pray the anti-viral meds will completely erraticate the virus from her body. 

2. Pray her brain will heal and she will not have any long term side effects. 

3. Pray her hearing does not get any worse. 

and for us...

4. Please pray we will have hope and don't go to dark places of worry and fear about the unknown. 

Thanks to all of you who constantly tell me you are praying and have asked how you can help. We have felt carried by prayer. 

Tomorrow we see an ophthalmologist and hope to get in with a neurologist soon. It's a lot for this little life. 

Eli answered, "Go in peace, and may the God of Israel grant you what you have asked of him." 1 Samuel 1:17

from a mamas perspective

A week ago I knew very little about MRIs, hearing loss, infectious disease and especially CMV. We basically tested Hannah for CMV to rule it out, not find a diagnosis.

We've gone through every emotion from extreme saddness and fear to anger and hope. I have to say that Thanksgiving weekend was the longest weekend of my life. A doctor should never deliver this news on a Friday afternoon with little information and instructions to just "wait until Monday". Our minds went crazy. 

By the time Monday came I was actually glad to see Keith leave for work so we could stop talking about it. And of course with 2 little ones my mind went to feeding and playing cars and rocking to sleep and watching curious george. And when they would both nap. Fear crept in. 

I believe the only thing that is holding us up right now is the prayers of the saints. 

Honestly, Hannah has been a challenging baby from the start. I actually wrote an entire blog post about how bad colic is when she was about a month old (that I never published) which seems pointless now. We don't know and may never know if those symptoms were CMV related or just colic. So far every doctor thinks they are separate. 

I never wanted this blog to go here. I just wanted it to share about life. Kids growing up, holidays, first days of school but not grief and a sick child. But, maybe that's what The Lord wanted. This is all part of the broken world we live in. 

As I started out saying, you never know what you can handle until you have to. Sometimes I feel like I'm barely hanging on, but that's when I must cling to Christ. 

A wise friend told me "when you look into the future and think about "what may happen" or "worse case senarios" you are picturing a future without God." I don't know the plans for Hannah's life but I am blessed to be a part of the story and see how The Lord ordains every step. 

If you're still reading thanks for staying with me. I know this has been an array of thoughts but I wanted to write them down and share a little from my heart. 

Thank you for praying for our girl. With anti-viral medicine prescribed we now wait to see how it attacks the virus in her brain and ears over the next 6 months. We are trusting The Lord for complete healing but, as Keith said, we must hold health loosely and watch to see how The Lord writes Hannah's story. 

Please Pray for Hannah

written by Keith

                     Hannah at 12 weeks

We are pleading for prayer

1^st Samuel 2:6-8

Hannah’s Pray to the Lord:

“The Lord brings death and makes alive;
    he brings down to the grave and raises up.
⁷ The Lord sends poverty and wealth;
    he humbles and he exalts.
⁸ He raises the poor from the dust
    and lifts the needy from the ash heap;
he seats them with princes
    and has them inherit a throne of honor.

This prayer from our Hannah’s name sake is Ellie and my prayer tonight.  We are needy and require to be lifted up.  Hannah was born perfectly normal on September 7^th of this year.  All tests checked out perfectly except for failing the left ear of her hearing test.  For those who are not familiar with the hearing test they are testing for certain brain patterns and the hospital test often have false positives.  So we were told not to worry and just to reschedule.  They were sure that she would pass the next time.  We didn’t know at the time, but our sweet girl was under attack.  Last Friday Hannah was diagnosed with CMV or cytomegalovirus.  This virus is very common, and most healthy people over the age of 2 never know they have it.  However, in newborns this virus can be debilitating.  Hannah probably contracted it while Ellie was pregnant or during the birth.  The mayo clinic and other sites I have been reading say they believe about 50% of US has contracted CMV within their lifetime and 1% of infants catch this disease.  Of those 1% 80% of those kids are not affected by it.

Hannah however was not one of those 80%.  This virus has attacked her hearing and brain which has left her with significant hearing loss and now a small head.  Her small head a long with an MRI indicated some type of brain trauma.  We were told about the hearing loss about a week and half ago and that led to the testing and final diagnosis of CMV.  While we were grieving the loss of her hearing we were given options on how she can hear again and live a very normal life.  While the thought of her having to wear hearing aids her whole life is painful, it is now dwarfed with the real possibility that she may have a mental disability for the rest of her life because of the brain trauma.  This has brought us to tears and has caused us to grieve even the possibility of our little girl going through so many struggles in life.   

It’s painful and almost unbelievable that a random virus that I have never heard of singled out our little girl.  Our lives have been turned upside down by what feels like the lottery of diseases. It's strange to say but we are praying that she just has hearing loss.  Frankly we are begging and pleading with the Lord that she just has hearing loss.  So please pray with us that her brain is unaffected.

We are going to be talking to a Pediatric Infectious Disease doctor early next week.  After having a couple of conversations with our doctor and a Neonatologist friend of ours there is a real possibility that Hannah will have to go through several days of an antiviral treatment.  This treatment may have to happen in the hospital.  If the virus is still active these drugs can put it in remission, but she will not regain hearing or brain activity that may have been loss. 

The friends that we have told have been asking us if we need anything.  Honestly right now we don’t even know what we need.  But I do know Hannah needs prayer.  Please join with us in prayer.  Ask your friends to pray for Hannah.  I selfishly want to see her name on Facebook posts asking for prayer.  Doctors can truly do little to help her brain, but God can.  He can heal her and protect her brain from the disease.  He can allow her to have all her cognitive and developmental skills.  He can provide!  Hannah of the Bible prayed that she would have a child.  One of the reasons we named her Hannah was because of 1^st Samuel 1:19 “the Lord Remembered Her”.  We are praying that the Lord Remembers Hannah.  Samuel was her child and his name means ‘because I asked the Lord for Him’.  We are asking for our Child’s mind to be safe in the midst of disease.       

                        Artwork hanging in her room

There is real hope that her hearing is all this disease has taken, and with technology that can be improved. I will continue to pray for this hope, but also please pray with Ellie and I that we hold on to the hope of health lightly, as we all know it is temporary and passes. So I pray as tears come down my face that my hope is in Christ.  I need my hope to be in the Lord, and want it to be true that this chance disease is but a single event in His loving plan.

She's here!

Hannah Joy Richards came into our family last Sunday morning (9/7/14) at 6:27am. 

Her stats:

Weight: 6 lbs 11oz

Length: 19.5 inches

Dark blue eyes and blonde hair (yay!)

Hannah is a sweet girl and eats and sleeps well so far, well like a 1 week old. 

Eli is still trying to figure out how she fits into our family, but loves to talk about her with others. I'm sure it will take a while for him to see her as a "regular" member of our family. 

The day after Hannah was born Eli decided he couldn't be out done...

His fever spiked to 105 by Monday night, so he, Keith and my mom were downstairs in the ER while Hannah and I were on the 2nd floor of the same hospital. The fun really began when we came home Tuesday and had to keep Eli (whose fever was still hovering around 102) away from her and me.

Truly this was not the homecoming I had envisioned and I hated being so separate from my boy especially since he could not understand why AND did not feel good, but we pray that the separation was worth it. So far, so good. 

Eli's fever broke Friday morning and since then his energy and laughter has been coming back. Praise The Lord!

I'll leave you with a few more sweet pics. 

We are so grateful for our new little bundle from The Lord. 

Thank you for rejoicing with us!

Summer Bucket List

All summer long this board has been hanging in our kitchen. 

Just a list of 2 year old do-able things to try and be intentional with our summer. Well, here we sit on the last official weekend of summer and I'm happy to report we did the majority of the things on this list. What we didn't do will give us inspiration for next year, hopefully. I didn't have the camera ready for all of them but below are a few examples of how we completed the list. 

"Family movie night", can you see the excitement on E's face? We watched Cars, of course. 

"Eating Popsicles"

"Bubbles!"

"Picking blueberries" strawberry season is surprisingly short in KY. 

"Running through a sprinkler!"

And last but not least, our version of a "water slide" 

Believe me when I tell you fun was had by all and it is nice to look back and see things we did together to enjoy the last summer as a family of 3. Next year someone else will probably be trying to keep up with this little guy. 

We hope you all have a wonderful Labor Day and enjoy the last drop of summer. 

"Your Grace Finds Me"

I love worship, especially worship music.  I think the Lord uses it to speak to me and help me to connect with Him when my words fail.  

As the weeks become shorter between "Richards party of 3" and "a family of 4" I have started really thinking about how much grace the Lord has for me.  For those of you out there with multiple kids (or heck only one) you know the joy, transition, stress a new life can bring to your household.  Once you were getting 8 hours of sleep and now you may be getting 3 at a time, your house used to be quiet and you used to be able to focus on what your spouse was saying when he/she walked in the door, but now it's all a blur.  

I know these things are all part of the newborn package, but as these weeks go by I am getting a little weepy at the thought of Eli not being my only child anymore.  Don't get me wrong I am so thankful for this new life, but things are bound to change.  He is likely to feel neglected, act out, have meltdowns, not sleep as well, etc.  But I am asking the Lord to help me focus on all that he "gets" to do.  

He gets to be a big brother, he gets to love this little girl like only a brother can.  He gets to teach her things that I can't and learn (yes learn) that he is not the only one we wait on around here.  I am so excited to see their relationship blossom in time and see his love for his sister and of course her love and desire to look up to him.

The following song by Matt Redman, "Your Grace Finds Me" is one I always turn up when it comes on in the car and the first song that I heard when leaving the hospital after finding out we were expecting a girl.  It is relevant to anyone's life and allows me, if only for a second, to remember just how much grace the Lord pours out on my life daily.  Lord, please help me to remember this clearly in the coming weeks and months.

It's there in the newborn cry

It's there in the light of every sunrise

It's there in the shadows of this light

Your great grace

                                                     It's there on the mountaintop

It's there in the everyday and the mundane

There in the sorrow and the dancing

Your great grace

Oh, such grace

From the creation to the cross

Then from the cross into eternity

Your grace finds me

Yes, your grace finds me

It's there on a wedding day

There in the weeping by the graveside

There in the very breath we breathe

Your great grace

Same for the rich and poor

Same for the saint and for the sinner

Enough for this whole wide world

Your great grace

Oh, such grace

From the creation to the cross

Then from the cross into eternity

Your grace finds me

Yes, Your grace finds me

There in the darkest night of the soul

There in the sweetest songs of victory

Your grace finds me

Yes, Your grace finds me

Your great grace, Oh such grace.

Just a few more weeks...

Today is a double post day because E is napping longer than usual and I'm kind of feeling behind. 

E trying to squeeze into his infant car seat. Regression? I hope not. 

This is what happens when mom trys to cook with a bored toddler in the kitchen. (Don't worry he didn't fall off). 

E has had a rough patch with sleep over the last few weeks.  It seems to be getting better, but a couple of weeks ago after a very restless night he crawled up on the couch at about 9am. No, he never fell asleep, but I think his mood improved. 

Baby girl's room is taking shape. I love how it turned out!

My little engineer hard at work. 

Me at 35 weeks. Whew, time is flying!

Cousin-time

A few weeks ago E and visited NC for some family time. I really can't believe I haven't gotten around to blogging about it until now, but things are a little hectic with baby girls' arrival in 5 weeks or less! Wow!

There's nobody like your family. I often tell E that they are "his people" and you have to stick with them and up for them when that time arrives. 

He absolutely adores his older cousins and talks about the constantly. Now that he's into matchbox cars he assigns one to everyone he knows, so the cousins have two race cars with their names on them waiting in KY. 

We also take many random videos of E with his cousins so he can look back on them and remember names & faces. One of his favorites right now is the train ride at the museum of life & science. 

These cousins are like brothers to E and I pray they'll stay close as they grow up. Even though we don't get to see each other as often as we'd like their mom and I try our best to keep them connected. 

Hopefully adding a girl to the mix won't throw their bond off too much!

The firefighter & the horse trainer

A couple of weeks ago we had the opportunity to explore some new places. 

First, a fire station. We did this with a local meet up group and even though I don't believe E has any sort of grasp of fire safety after touring the station and listening to the firefighters it was a fun experience. I do think mom learned a few things and was reminded to check the smoke alarm batteries :). 

He didn't want to climb up in the truck, so we got this pic instead. 

Trying to get a group picture, haha. 

Later that day we traveled to Lexington and visited a horse farm (something you just have to do if you live in KY). We went with our good friends the Dortches and actually visited a lady who grew up in NC, small world. 

At first he really didn't see the big deal. 

But the longer we stayed the more he warmed up to them. 

He even picked grass and gave them some...they seemed to like it. 

In normal Eli fashion he didn't want to leave when everyone else was ready. He kept saying "bye, bye" as we walked away. I think he could have stayed there all day. 

One last thing we did that day was pick blueberries...

I'll write more about this in another post, but Eli loved it and the blueberries were SO good! 

One last snap shot of how Eli uses my 32 week belly, oh my!

He's getting closer and closer to being a big brother and yet has no idea. :)