Kyle's NICU Story in Pictures

Friday, November 23, 2007

The New Normal... -John

I hate the new normal. Don’t get me wrong… I would rather live this right now than not,… but I absolutely don’t love the new normal that our life has become. Kelly and I were having a pity party for two on the way home from the hospital today. We were discussing how today, we should have been shopping and decorating for Christmas and doing all the things that we usually do. We aren’t very “traditional” people, but there are a few things that we have grown to love as a couple and family,… some of those being do the thanksgiving thing with family, then the shop till you drop (even if you don’t purchase anything) day after thanksgiving extravaganza. Now, the other part of me didn’t totally mind missing out on all of that, but,… just the normalcy of the holiday was sorely missed. We spent the day at the hospital. We met some new friends in the nurses,… Kari and Sara were great today. They sort of tagged teamed because poor Kari was on charge nurse duty today, which meant that not only was she Kyle’s nurse, but she was over all other 50 something babies nurses in level 3 NICU. WOW! So, needless to say,… she needed an extra set of hands/eyes etc… enter Sara. They both did such a great job taking care of Kyle. Great people. Kyle did well today considering… when I say that, I mean considering the vent leak that can be either 0-100% at any given moment,.. the pda valve that continues to give him fits, etc… These two things alone are enough to give a parent a heart attack due to how these things present themselves. Together, it just isn’t fun at all. Kyle’s Breathes per minute and Oxygen needs were high today. That was a little hard to take, but we have also been told that he is doing very well considering all he has to overcome, … his doctors and nurses are encouraged by what they see, knowing we still have some hurdles to overcome, but never the less,… encouraged.
That is a good word… encouraged. Poor Jack doesn’t feel well tonight, we can tell. It is difficult to see and know that your kids aren’t feeling well or coping well to change… (the new normal isn’t too much fun for them either… however, we are encouraged.
We have a new 23 week little guy that came into our pod yesterday. It was hard to look at his incubator and parents knowing that they were living in their day one… it flooded back too many memories from just a month ago… but, even still, I am so thankful for that month. I am thankful for the new normal even though it isn’t what I would choose, what I would want… but here we are… I think about that matt redman song a lot,… Oh no, you never let go through the calm and through the storm, oh no,… you never let go every high and every low oh no… you never let go, Lord… You never let go of me…

Great words. Great song. I can see a light, that is coming for the heart that holds on and there will be an end to the troubles but until that day comes… still I will praise You, … still I will praise You…

So even though I am not in love with the new normal… still I will praise Him.
God is good. Times are hard. But, God is good.

I want to say thanks to all of you who are caring for us, about us… text messages, comments on the blog, emails… these things are so encouraging to Kelly and me.
The meals, the gift cards,… these things have been such a blessing to us…. The anonymous people who sent us the card in the mail with the gift,… thank you so much. We received it today. Know from the bottom of our hearts that we are so thankful to all of you, and for all of you… our friends, our family, our community. God is using you to be our encouragement, and to help take care of needs for our family in this time…
And we are thankful for that. We are grateful for that. We have so much to be thankful for… even though this holiday isn’t exactly how we designed it,… it means more to us this year than it has in a long time. The new normal may not be fun sometimes,… but it sure is assuring of God’s care and His glory.

14 comments:

Anonymous said...

Hey John and Kelly...I just wanted to write tonight and let you know that there will be a blood drive (Gulf Coast Blood Bank)at the Porter Volunteer Fire Station, in Porter, TX. tomorrow, well actually today, it is after midnight...Saturday, Nov.24
My husband, my daughter and I are all going down to give blood for Kyle...we are going to be telling others about him and I am going to post a bulletin about the blood drive on myspace and put his name and # so that if anyone can and will, they can help out too...
We are still praying daily, for God's healing touch on your baby...
Put the information about the blood drive on the web site, so more people will know...I am sorry, but I don't know the exact times, but I will try to find out and let you know...
Love and prayers,
LeAnn Smith

Anonymous said...

John & Kelly,

When I read this verse tonight, I thought of you and your family. You have been living examples of it.

Philippians 4:
4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Thank you for allowing God to use you during this time in your life to be a light.

Still praying and believing!
Bright Blessings!
Leslie (Howell) Nemec

Carol said...

God in Heaven, you created everything we can see and hear and feel and smell and taste and touch. You created life. You created Kyle. You created normal. Today, God, will you begin to allow normal in Kyle's life to be days of easy breathing, days of growing, days of sleeping, days of kangaroo care (with Mom and Dad) days of visits from big brother, days of vents that don't leak, days without needles, days of peace?

Will you place your hand of mercy over him today and let him live in peace in his little bed?

In the name of Jesus I ask you,
Amen.

Anonymous said...

John,
Thank you for sharing your thoughts and feelings once again with.... EVERYONE!

I am certain this was not the way you would have designed things to be... God did it this way.... we don't know why. However, I know there are many people who have been blessed and who have grown in Christ as a result of Kyle's birth. We have all watched God work in the past (almost) 5 weeks. I am anxious to see what good things He has in store for Kyle. I will continue to pray for Kyle, Jadon, Jack, you and Kelly. Hang in there!!

Still praying, still believing and still EXPECTING Kyle to be healed!

Candy Humber

Tammy said...

May God continue to uphold you and strengthen your hearts! We are joining you in asking God to do what only He can do for all of you, especially your little lion!

Lorra (McDugle), Toby, & kids said...

John & Kelly,

We are so sorry to hear about Kyle. Please know that y'all are in our daily prayers!

We ask that God will heal Kyle and give your family the strength during this time.

We love y'all!

Keep the faith,

Toby, Lorra, Jack, Maggie, & Kaysie Bell

Cathy (Hart) Clemons said...

John and Kelly,
Tina (Wright) Braswell sent me an email of what was going on. I am (as well as everyone else who reads your blog)inspired daily by your courage, faith and strength. During a time when people are comforting you, you both are touching lives and comforting others in ways you will probably never know.You both are truly amazing!
It is so hard to watch our children in a situation in which we can't fix. But our heavenly Father has the power to heal Kyle and I believe he will. I pray daily for wisdom for the doctors and nurses and for a renewed strength for you both. Please know that my family and I pray for Kyle daily and know that we are constantly thinking of you.

Praying for you,
Cathy (Hart) Clemons

jen said...

I love you guys so very much. Isn't perspective unbelievably powerful. So much of life we just kind of float through. I love you guys for shaking up all of our normalness... cause sometimes our normal is complacency and isn't dependence on God. I'm sorry you guys continue to go through the stress of all of this - but so very thankful 1. for your hearts, 2. for your sweet little lion and all he has made it through, 3. for the community of God which this board represents in micro. you guys have changed all of our normal - and we, as much as we can be, are with you, behind you, praying for you, thinking of you, reading this thing 5 times a day :), and most of all, loving the snot out of you.

happy turkey day... you turkeys. we'll pray for jack and jadon that different but still powerful things will make this a special holiday for them.

I have a story for you along those lines - when we were little my parents had NO money (literally bankrupt) but wanted to get away - so through a friend they rented a cabin and were shocked at how inexpensive it was. We got there... and literally, there was no furniture, and no electricity. it was a DUMP. my parents had a panic moment and then decided to make the best of it. Dad took my brother to get wood, mom and I had "coming up with beds" duty. And we played charades and laughed and truthfully, had a GREAT time. Mom and dad laughed - because for years and years, Joey and I asked to go back to vacation at the "cabin." Somehow - their attitude and improvisation and quality time with us translated that dump into one of our most fun vacations. I pray that for Jack and Jadon, that their perspective would supernaturally be protected and that they would glean from the new normal some great memories of quality time with people who love them dearly.

Someday, maybe they'll ask if they can visit the hospital again. :)

Love you people.

J

The Burkett Family said...

I tell you the same thing over and over, but I want you to know that every morning before my eyes open I pray for Kyle, for you two as parents, for your other two sweet peas. For His perfect peace for all of you. When my little sister had her preemie, she told me the best advice she got was to take one minute at a time. Praying, faithfully, Amanda

The Curry's said...

John and Kelly: We just wanted to write to give you some hope. Our little grandson was born weighing 1lb, 10 oz. He was in week 24. As I read your blog, it brought back all of those unbelievably hard days. However, Ashton is now 4 and as wild as any little 4 year old can be. He is smart, very active, a little smaller than most 4 year olds, but catching up fast. He is our miracle boy.
We believe the reason he made it was Prayer. Our small group prayed, our family prayed, our Church and pastors prayed, friends prayed, people from all over the United States prayed. Read James 5 every day as you pray. This is the chapter I use and it is a comfort. May God bless you and keep your faith strong. God can do anything, but it is in His timing as we realized on an hour by hour basis with Ashton. Christian love, The Curry's - members of Fellowship of The Woodlands.

Brandie Noles said...

Hey John & Kelly,

The new normal I love it, however I never really thought of you as normal ! hee hee just kidding. I'm glad that things are steady thats a good thing even though it doesnt seem like it. We continue to remember all of you guys in our prayers and love the updates on the blog. I keep forgetting to comment on the fact that Kyle's favorite nurses name is Brandi, the kid has good taste. Who knew !! I hope that as rotations change this next week, you guys get good interns and just remember to be patient with them, they have to learn too and somemtimes they are very "green". As usual though the NICu nurses are unbelievable and they always have it together. They are such a blessing and really meant alot to us when were at HCH. There are a few that still work there from 12 years ago and we love to see them when we visit.
Like I said we are praying, praying, praying....

Love you so much
Brandie

L.D. said...

The Sherrill Family remains in our daily prayers ...actually, you are our first, middle and ending daily prayer. You are in our thoughts throughout the morning, afternoon, and night ... and in our hearts always. The shopping thing; it's highly overrated - but you knew that too. P.S. I did sell our Pottery Barn stock....Our love...

Holliday Family said...

Hi, this is a lurker coming out of the shadows to tell you how much Kyle's story has touched me. I sit and weap but not of sadness but for your amazing courage and faith. God is doing amazing things through you guys and you are obviously loved and supported. My prayers are with you.

Debs. Lamberhurst, UK

Anonymous said...

You have so much to share - not only with us, but with the new family that just moved in with you. Don't hesitate to reach out to them with a card or something to let them know that you have been in their shoes and there IS reason to hope.... They may want to talk to you about the experience or they may choose not to, but they WILL appreciate the support! :o)

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!