Landree's Stay in the NICU: Days 13-17

April 19th-23rd, 2012

If you've been following these posts, you've noticed the posting hiatus I've been on the last four or five days. This is because of the news we received on Thursday, April 19th. I needed the last few days to take in and process what we were told. Thank you for being faithful and praying for us and continuing to do so as we may (or may not) face some challenges as a family. God is good, and He knows the future...not us, not any of the doctors, only God.

The last few days run together in my head, so I'm not going to be very good about separating them out and telling what went on on which day. Let me start with the news we received on Friday...

I was actually taking advantage of a nap since AB went down for one, too. I was woken up by my phone ringing...it was Dr. Kahn. She told me that the results to the genetic test were in, and they found the problem behind Landree's feeding issues and difficulties. She is missing one of her chromosomes, and due to that there is a condition that coincides with the absence of this chromosome. You'll have to understand and respect my decision, for the time being, to keep the name of this condition private. I am not yet familiar with everything that goes along with it, and with time I know I will be the expert on this condition. Until then, I am trying to avoid others from researching it and drawing their own conclusions and becoming "experts" on it. I also don't want to set Landree up for people having certain expectations on what she is going to experience. I want others to treat her like a "normal" (whatever that is!) individual that isn't facing difficulties such as this one. Who knows if she will face difficulties. There is a spectrum of which we judge this condition, and who knows which end she can be on. Again, only God knows. I believe that God can heal and even though she's labeled, it doesn't mean she will show signs of anything. I am  a little protective of her...and myself. I'm guarding my heart and hers from people's, sometimes, hurtful comments. This has nothing to do with denial or shame. I do not deny she is missing a chromosome and I am in no way ashamed of it. Everyone chooses to handle things differently. Sometimes publicly, sometimes privately. Right now, I'm public about her having it, but private about what it is and sharing every little thing about it. 

All I can tell you is, I have a beautiful little girl. She has beautiful eyes, a precious nose, the sweetest "smile" (I don't care what the nurses say, she IS smiling at her Momma!), and the sweetest demeanor. I love this little face more than anything.

The doctors are encouraging in some ways. They all agree that if you were to walk past her in public, you would never know she has an underlying condition. The geneticist said the same thing. No one will probably ever know, if they didn't already. Right now, she's a newborn. She does everything a newborn does. She eats (just at a little slower pace), she poops, she pees, she cries and she coos. She's as much of a newborn as the next one. As far as I'm concerned, she can have a limb growing out of her head and she'd still be my beautiful baby.

You have to understand, too, I am sort of in the "grieving" process. I am grieving a baby that I did not have. When you go to the hospital, deliver your baby, you have a certain expectation for how things are going to go. The baby will pass all their tests, eat well, and then get to come home as expected. This was the case with my first baby, but not my second. Things have been much, much different. So yes, I am grieving that things didn't go as expected. They did, however, go the way God expected. God knew all along that they baby I would have would be "different" by our standards, but not by His. She is no mistake. God made her how He wanted her. My dear friend, Kasi, sent me a text one day and told me to read Psalm 139. Thank you, Kasi, for this. I knew this verse...only partially by heart, though. Now, it's engraved in my heart. I have to share it. It's beautiful. It's about my Landree.

PSALM 139: 1-18

O LORD, you have searched me and known me!

2 You know when I sit down and when I rise up; you discern my thoughts from afar.

3 You search out my path and my lying down and are acquainted with all my ways.

4 Even before a word is on my tongue, behold, O LORD, you know it altogether.

5 You hem me in, behind and before, and lay your hand upon me.

6 Such knowledge is too wonderful for me; it is high; I cannot attain it.

7 Where shall I go from your Spirit?

8 If I ascend to heaven, you are there! If I make my bed in Sheol, you are there!

9 If I take the wings of the morning and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me, and your right hand shall hold me.

11 If I say, "Surely the darkness shall cover me, and the light about me be night,"

12 even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.

13 For you formed my inward parts; you knitted me together in my mother's womb.


14 I praise you, for I am fearfully and wonderfully made. Wonderful are your work; my soul knows it very well.

15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.

16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

17 How precious to me are your thoughts, O God! How vast is the sum of them!

18 If I would count them, they are more than the sand. I awake, and I am still with you.


Wow. That is powerful stuff. Thank you, God, for knowing what tomorrow brings and already being there. Thank you for being the one who intricately weaves us together and makes us in your image. Thank you for already knowing. This is my strength and my comfort. Thank you for entrusting this child with me. The medical world considers her "imperfect" to me, she is perfection. Thank you for this gift.

Saturday, April 21st was Landree's original due date. She hit 40 weeks on this day. It was crazy because about this time, she started waking up and meeting her feeding goals. She's really taken off on her feedings. She meets her goal more than twice a day now. This is huge for her. Thank you, God, for this! Austin and I are so proud and so thankful for her. Speaking of Austin. What would I do without this guy? He's been my rock and my source of encouragement. Don't get me wrong, he's had his bad days, too, but for the most part, he's right there along with me encouraging me every step of the way. We were leaving Landree the other night (which is really hard for us to do EVERY NIGHT). I thought Austin was right behind me, but he was still bending over her little bed talking to her. Melted my heart. He's the best Daddy. He loves his girl/girls.

We are so in love with this little girl. Just like we are with her big sister. It is crazy how your heart makes room for more than one. I've heard that with any siblings, you love them the exact same, but in different ways. I guess because Landree has this condition, I already love them in different ways. Not anymore or any less. Not any better or any worse, just different. She has a certain "look" sometimes that is so precious, my heart can hardly take it. It's only when she's awake, and those times have been few and far between in her first weeks of life, but I finally caught it on camera. Love. This. Face!

Yes, we may face some challenges and some delays in her development, but we are completely prepared for what life will bring. I have to try really hard not to thinks so far ahead into the future. That creates a lot of anxiety. A good friend told me today, "Keep your head where your feet are." How simple is that? But it has so much meaning. Each time I try and get ahead of myself, think about where my feet are, and focus on exactly where I am right now. God is in control. It's ignorant to think my worries and my anxieties are too much for Him. He's got this.

Thank you God for these trials. I am growing so much from this experience. It's a growing experience just learning to trust you with this precious gift. She is not mine, anyway. She's belonged to you all along, but I am honored that you entrust me with her. My pastor said something to me the other night, and I've been thinking a lot about it. Having gone through this and learning about trusting Him and dealing with a child that may not fit the "normal" mold, this will become my ministry. I can use these experiences for the good and to minister to other moms/parents going through something similar. I would be honored to walk away from this only to bring glory to God's name and be thankful for this experience. God is good. All the time.