Kyle's NICU Story in Pictures

Wednesday, May 14, 2008

Kyle and me - Kelly

"Answer me when I call to you, oh my righteous God.  Give me relief from my distress.  be merciful to me and hear my prayer." Psalm 4:1.  My friend Ann Marie put this on her son's blog the other day and it has made such an impact on me over the last couple of days.

It is funny to me how resilient our little guys are and how NOT we are.  I guess the older we get the more we lose that ability.  I am willing to be that even through all my worry and and fear and begging to God - if you were to ask kyle how he was doing ... he would tell you that life was great!  He might complain a little about the extensive tummy time and the cold lotion massages but other than that he would be grinning from ear to ear and tell you about how he loves to eat, his bed is so comfortable, he has this great paci that he gets to suck on when ever he wants, he has two brothers that are constant entertainment!  his mom plays with him TONS with lots of cool toys and we sing songs as I slings my arms and legs all over the place!!  again - he might complain here of all the tummy time where I wont let him chew his hands and won't let him just burry his face in the ground - but other than that... LIFE IS GOOD.  he doesn't worry about the future, he thoroughly enjoys today.  

I am not naive enough anymore to think that the mom of a micro-preemie could do this so I won't suggest it or pretend that I will do it.  Even when I have others remind me that their son or daughter didn't do something until a certain time frame or that adamant confidence that "he is just perfect"  it doesn't bring me a peace.  My first son did not walk until he was 16 months old and he is brilliant and so I totally get that but every time I think that (sorry for this honesty about to be thrown out of my mouth here)  I remember seeing the MRI pictures as the doctor pointed out the missing matter in kyle's brain!  Jadon didn't have that!  Or the therapist that reminds me of when you are born at 23 weeks you brain is forced to make connections to survive that it was not ready to make.  And the 26 weeker that is 6 years old and in GT classes didn't have that - so all of these stories even though they are meant to be encouraging  -  aren't.  [and please hear this as a mom just venting and not someone who doesn't want to hear stories that might encourage me - i'm just having a hard day and need to let it out here.]  It feels like no one has ever or will ever go through this.  No one can understand, no one can help.  I know this isn't true but I'm just being honest to how it feels some days.  I want to assume also that Kyle will do all these things and I really think I do - I just don't have the ability yet to downplay what  he or the rest of our family or all the other stud 23 weekers out there are going through just for the sake of being positive.  there ... I said it.... 

I hate to sound so negative but those are just some of the things that well up inside me and need to get out sometimes.  And I want to scream when this whole confrontation but like I realized the other day and I blogged about it in my last post.  I am going to have to give up - if I want to rest, if I want my heart to rest.....

you know - I bet to most on the outside think that I look at rest.  My face is usually smiling, My words I'm sure sound positive when I speak to people, and kyle looks really great - like a regular 12 week old (just with oxygen).  but always always always inside is this anxious longing; a constant deep wanting for something.  I have never bowed my head... not once... since oct 22nd at 9:05 am that I am not begging God to heal my son.  Everyone around me is blessing the food - I am begging for my son's legs, arms and core to work the way they need to.  my home group is praying for the person next to me and I am begging for his lungs to heal and his brain to be restored.  and i am still not sure how this matches with what God has dreamed up for kyle.  and kyle I feel like has such a positive prognosis physically and he is doing so well.  I am in awe of the women that I read about and talk to everyday that deal with even bigger hurdles than Kyle.  and even further as I struggle and wrestle over decisions or worry - my heart aches for the precious mom's that don't get to.  The ones that spent mother's day wishing instead of rushing.  We have been praying for a little 28 weeker named McKenzie that passed away just last week - in the NICU you learn to be so calloused to the ages.  28 weekers have such a good chance when you look only at age.  She had NEC.  I will never be able to even imagine what hurt this mom feels.  My inside aches so badly and my spirit truly groans on her behalf.  We never met McKenzie or her parents - Our friend, baby Coy's mom, is friends with her parents.  

God has given Kyle life and it appears to be life abundant (John 10:10).  So we will work hard and fight to pull out every ounce of potential that kyle has been blessed with.  And these mom's and these little one's are why we work hard.  Kyle's buddy in the NICU, Matthew - born at 23 weeks also - he is why we will work hard.  God has a plan ahead for Kyle and we will work until we get there - whether it is minutes or hours of therapy "play" each day - we will get there.  And we will continue to pray for these families for peace, for joy, for abundant blessing and even though I know they would rather have their children than our thoughts and thank-yous, we will continue to be grateful to them for how God has used them and the beautiful life of their children to change me.

and on the resting idea - I keep waiting for our circumstance to win - to change - to go away - I keep waiting for a moment when the fear is gone.  and not the kind of gone where I have listened to my friends and family long enough that I am convinced kyle is fine and then one therapy visit blows that security away.  - but the kind of gone where I am at rest on the inside.  I am coming to a place , i guess this is part of healing, where the only place it is over is in Christ.  I mean when I say - out loud - over and over - "Answer me when I call to you, oh my righteous God.  Give me relief from my distress.  be merciful to me and hear my prayer." Psalm 4:1 and then rest in the fact that God has given me a picture of my son running and playing in the back yard.  I believe that is truth.  he has given me scripture that tells me kyle is a lion and that he will lack no good thing!  And he has confirmed those scriptures.  That is truth.  so my circumstance is not going to change - my rest will only come in this.  i again see that God's peace will pass understanding.


Mark & Amanda said...

Keeping Kyle and your family in my prayers!

Anonymous said...

Thank you for sharing and trusting those who read with your emotions. We love you guys and continue to pray for peace and contentment for you and strength and healing for Kyle.
Many blessings and much love, Adriane

anjel said...

I would like to say that everything that you said is okay.. it is okay to vent everyone needs to.

My daughter was 27 weeker. She will be 2 in July. She has PVL - severe damage to the white matter of the brain. She also had NEC AT 2 weeks old.

I still even after almost 2 years struggle with the same emotions that you are going through. Keep your head up. Your son is lucky to have such a caring mother.
Angela & Christina

Collegegirl said...

Still praying for Kyle and your sweet family!

Anonymous said...


I don't know you but have been following your posts from the very beginning. I was sent a prayer request regarding Kyle through a prayer chain right after you had him.

I want to encourage you to keep praying. You are his advocate and intercessor.

You are also a wonderful witness. I appreciate your honesty and your willingness to be transparent.

Love in Christ, Debbie

Anonymous said...

My heart aches for you. It really does. This is what being a preemie mom is about... atleast for a while. I still have lots of those days with my 15 mo old former 25 wker. We lost his brother to NEC, so I can imagine both sides of the coin... I assure you, they both suck. (To be blunt...) Yours is a long journey toward healing and acceptance. Thanks for your continued honesty... It's very brave!

Kara Price said...

Just wanted you to know that you are not alone in your emotions. Even after therapy, I still struggle with those emotions ever day. Just yesterday, I got really bummed when we came across a little girl at the park running, jumping, swinging by her arms, and she's only a month older than Truman.

I wish I never heard another "my child didn't do X until X age. Truman will get there." And then I have to remind them, that he suffered brain damage. Those statements are not helpful at all to me.

Just wanted you to know you're not alone out there,
Truman's Mom

McFred1 said...

Believe it or not, I have been where you are!

My daughter is also 23-weeker. Like most micro-preemies, she has had quite a rollercoaster ride … but I just wanted you to know that, among her many complications, she did/does have bilateral IVH (with some hydrocephalus) … her ventricles are still ENORMOUS – but stable.

She is a totally normal toddler … and you would NEVER know that she went through any of it! Feel free to check out her story –!

~ Lauren

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!