Christmas 2014

Like everyone else it's hard to believe Christmas is over. The holidays have come to a close, kids go back to school this week and Keith's work ramps up again. That also means Hannah's doctors appointments start again as well as PT. 

Honestly, I'm a little glad to start up appointments again. I did enjoy not having constant things that kept us in the car & in waiting rooms, but these last few days I have started to give into worry a whole lot. Questioning every little thing Hannah does, wondering if it's normal or brain-related. When we see doctors and therapists they seem to keep these worries at bay. 

For the most part Hannah is doing exactly what a soon-to-be 4 month old should be doing.  We are trying to celebrate every little thing, but then worry comes back. The what ifs and the second guessing. 

I know I can't live there. Hannah is who she is. God knows her future, not me. This is something I repeat to myself daily, sometimes hourly. 

Back to Christmas... It was great. Keith's parents came and spent time with us which was a blessing and this is the first time in our married life we've spent Christmas in our home. It was different. As you can imagine I was a little consumed by CMV at times and thinking about what our life was like last Christmas. What would it look like next Christmas? 

I'm so thankful for Hannah. She makes me smile so much and gives me joy. I love that she's in our family, I just hate the virus. 

Here are a few more shots from Christmas. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:34

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!