Update and More Pictures :)

Hi! I know that many of you are praying for us and we cannot tell you how much you are blessing us...thank you! I also know it's been a little bit since I filled you in on what's up with us so I thought I'd do that. :)
Selah had her CT scan done in March. God worked it out and it went so smoothly...thanks to our faithful prayer warriors too! We will go to UMC to meet the Craniofacial team and doctors to discuss the jaw surgery and their recommendations, timeline, etc...based on the updated CT scan images they have. Our appointment with them is the first week in May. If we aren't on the same page with them then we will probably look into a consult with the team at Arkansas and possibly another location. We aren't really ready to start the jaw surgery process but we are also unsure about what's best for Selah. She is doing so good and staying healthy and it's such a blessing to have this time with her. We dread the surgeries, hospital stays, pain for her, etc. But, we also want her to be able to open her mouth though and to maybe be able to have her trach removed eventually...hopefully. She's getting teeth in now...two currently...and we can't get into her mouth to check them out...unless you pry her mouth open and really upset her and are possibly hurting her. She does have an aversion to touching her mouth or putting food to it, especially here lately, but then at times she can be so interested in food too. We want her to be able to taste it and try eating one day.  I just don't know if these outweigh all that is involved with surgery. It really weighs heavy on my heart. I want her to not have any pain, to be able to just be a kiddo, to know that we don't want to have to cause her any hurt...to know we love her just as she is. I know it can be so much worse and I try to be thankful for how blessed we are. I just have moments of wanting it to be all "ok" and just as I'd prefer...just as I'm comfortable with. God reminds me though, that He continues to have His hand on Selah and us and that in all of it He is working and He is enough.
On a lighter note, Selah is now clapping and has learned to shake her head "no." We are working on standing. She requires some assistance but she is doing much better with bearing weight on her feet. She has some neon blue "hot pants" that are super tight and they keep her hips close together...so she doesn't stand with her legs so far apart. She does not love tummy time but is rolling from her tummy to her side...with some prompting. We saw her arm/hand doctor recently and he said that because of varying factors that she won't crawl but will sit and scoot and eventually stand and then walk. This made me feel relieved because she doesn't tolerate her tummy time or doesn't show any interest in crawling. It makes sense though that she won't because it is physically not possible...basically. She has learned she can stand though and she is getting more confident in it. She does not mind the praise that comes along with her accomplishments. She is also hearing and listening better, especially with her aid. We still have a loaner aid and are in the process of seeing if insurance will help cover it. Selah pays a lot of attention to the sign language we use. She doesn't do the signs yet but she is very attentive to them and responds so well. She is also very indpendent and knows what she likes...she gets this honest! Each morning we give her a choice between two outfits and she'll usually smile and reach for the one she wants. One morning though I was standing and holding her in her closet while I picked out two outfit choices. I stood there and showed them to her and she shook her head "no" and looked up over them to her other clothes hanging up...with a look like, "I'm not impressed with either of these choices." She eyed a particular dress and when I gave it to her she was very excited...she knew which she wanted to priss around in that day!
Selah is also working on tolerating her speaking valve. It's the little purple piece you'll see on the end of her trach...in some of the pictures. Normally she breathes in and out of her trach. When we put the speaking valve on though it changes it up for her. The air comes in the valve but then forces it up through her vocal folds and into her mouth and nose. The air can only come in the valve and only out this other way so it's different than when she doesn't have it on and she doesn't always tolerate it. Sometimes I put the valve on and she immediately begings crying and gags and coughs it off. Sometimes I'll put it on and she's fine and she makes vocalizations. The valve amplifies the vocalizations and its so sweet to hear her voice...it's just little squeals and groans she makes. It's like she's talking though and she'll get loud and quiet and raise her eyebrows while she makes different facial expressions. I'll try to encourage her to make the sounds by saying, "oh really, I hear you, oh wow" or so on. She responds and will continue to vocalize. Yes, I'd love for her to be able to open her mouth and say words...for her to say "mommy"...but that's not where we're at right now and I'm so thankful to be able to hear those sweet squeals! I took a video of it on my phone but can't figure how to get it on the computer...I'll work on it. ;)

She has her speaking valve on and her hearing aid...tolerating them both!

We were blowing bubbles and she somehow ended up with the bubble wand. When I tried
 to take it to blow more bubbles she would let me know she wasn't happy :)

She's standing on her own...just got her hands resting on me for stability. She's wearing her "hot pants" too.

In her car seat and I just got a sweet pic. The doll she has is one of her favorites. She just looks at it and "talks" to it.

I really like this picture if I may say so! :) Still in her car seat...striking poses!

I'm am humbled and thankful for this sweet time with her. A dear friend of mine shared with me something that I'm trying to remember...in all of it...the good, the hard, the tiredness, the uncertainty, and the time and blessings with Selah and each other...soak it all in, soak it up!

In Memory Of...

Hi! In a previous post I asked that you would come alongside a sweet friend of mine, Crystal Keller and her husband Dennis. At the time they were expecting what they thought was a sweet baby girl. There was also a lot of uncertainty that was accompanying her pregnancy and the baby's survival. Crystal went into labor early though and a month ago today, on March 14, 2012, Kelsey Nolan Keller made his early arrival and surprised them by not only being early but by being a sweet baby boy! Kelsey was only with Crystal and Dennis for a few precious minutes before he passed away. These minutes though are probably some of the most cherished and sweet moments that Crystal and Dennis will ever experience.
I debated on whether or not to post an update earlier but I decided to wait for various reasons...I also didn't want to take away from Crystal's story and heartfelt words...her blog is
nomatterwhat-ck.blogspot.com...please check it out to hear from her heart and to see pictures...
I want to say that anything shared in this post is from my heart and are my words and not anything Crystal has said.
I have had on my heart though to share this post as a reminder of Kelsey's life and in memory of him. I think that although it is not intentional, it is so easy for others to forget or to move past something like this...yet mama feels broken, stuck in the heartache and longing for her sweet baby's life. I just want to lift up the Keller family and to remind myself, others, and them that this sweet life is not forgotten and it is to be celebrated. It's a celebration of life that a month ago he blessed this world and the Kellers with his sweet presence. It doesn't need to be forgotten that Crystal carried this sweet life in her womb as he grew. It also doesn't need to be forgotten that it was a month ago that the Kellers got to cherish and yet grieve as this sweet baby made his arrival and then his precious life faded away.
I can only imagine the joy in seeing Kelsey and holding him, kissing him, smelling him, watching him breathing, hearing his heartbeat, and sharing all that love with him and yet having to let him go. I watched as Crystal and Dennis honored Kelsey's life with a sweet memorial graveside service...on a beautiful and sunny morning...in a peaceful and quiet country cemetery. I have also seen Crystal trying by faith, by trust, by hope to believe in God's promises and God's truth even though she is broken and her heart aches and longs to hold, to love, to see sweet Kelsey again...a month from delivery, on her due date, on Mother's day, on every day in between she longs, she aches for sweet Kelsey.
And although so many questions and so many...what seem to be unanswered prayers...surround the Kellers and surround this situation, it doesn't need to overshadow the fact that sweet Kelsey was here and his life is to be remembered. It is in memory of Kelsey that I say that he was so precious...chubby cheeks, head full of hair, and just had an angelic face. I know that he has no more weakness, no more hurt, no more sadness now. Although this makes no sense to us, he is with the angels and he is being held by God's loving hands...they sing over him, they hold him, they love him...until he meets him mama and daddy again...
Kelsey...just as I prayed this over Selah while she grew in my womb and just as we read it daily now, I pray this over you sweet boy and over your precious life. You were "knit" together just as God designed you to be and your sweet life, although to short, was ordained by God...who is holding you now...
Psalm 139:13-16
"For thou has possessed my reins, thou hast covered me in my mother's womb. I will praise thee for I am fearfully and wonderfully made; marvelous are thy works and my soul knoweth right well. My substance was not hid from thee when I was made in secret and curiously wrought in the lowest parts of the earth. Thine eyes did see my substance and yet being unperfect and in thy book, all my members were written, which in continuance were fashioned, when as yet there were none of them..."

I ask that you continue to lift up the Keller family. I cannot thank you for your support and prayers...they mean so much more than you'll ever know!

Fun Times!!

Hi!
We've been blessed to celebrate Selah's first birthday! We are also celebrating Easter while remembering that on Easter last year she was still in the NICU at UMC. It's much different this year! We went to her first egg hunt this morning at a local park. Daddy is working so he couldn't go :( but we went with some sweet friends...Z, "Shell," and Garrett. Selah really enjoyed looking at the eggs and watching all the activity. She always enjoys being outside. As soon as we picked and egg up, she'd put it to her mouth and I'd quickly confiscate it because I know they've not been "sanitized" ;). She had lots of fun though!

On her actual birthday...just the girls because daddy was working...she wore her bday outfit again and posed with her "one" cookies while I sang happy birthday to her

Amazing cookies a local friend made...she's talented! We really enjoyed these!

Selah and I at her first Easter egg hunt...couldn't get the pic any "clearer"

"Shell" as she held the basket and put eggs in...Selah and I followed and helped

Oh, had to post this one...the first time she sat in a high chair when we were
eating out...she's "tasting" a chip...what a big girl! :)  

Picture Time :)

I've tried to pour my "hooter milk" or "liquid gold" while holding her and learned the hard way that it doesn't work. She karate chops or kicks and knocks it out of my hands. So, she was put in a new "seat" for the moment.

She's happy too...mommy too..no spilled milk!

Birthday Girl...at her little birthday celebration this past weekend. She'll be one on April 4th!

Fabulous if I may say so :)

Truly humbled and thankful for this sweet celebration!

Again a sweet moment...and a rare occurence...we all have our eyes open at the same time!

 

Her first birthday cake

She's holding a piece of a chicken nugget. We were eating them..gourmet, I know...and she's so interested in touching and putting food to her mouth...even though she can't eat it. She's digging this nugget though!

Much love from us!

Down Memory Lane

Hi, hope all is well with you. As we are getting closer to celebrating Selah's first birthday....wow...it's gotten me thinking about this time last year...a stroll down memory lane...join me please...
I was thinking about how thankful we are to have her home and it just got me thinking about our journey from the beginning of the pregnancy to now. I remember being so excited and yet so terrified when I found out I was pregnant. I was shaking with excitement and yet begging God to please let us have this baby...I was so scared that we may miscarry again. I remember going to the doctor and hearing the heartbreaking news that "things didn't look good" for this pregnancy either. And I remember going back and hearing and seeing in the doctor's face that things were improving...and we both knew only by God's grace. I remember each week I would cling to the hope that I was still going to hear a heartbeat...still going to have this life growing inside me....yet waves of "what if" would battle for my hope. I also remember the day that we found out we were having a sweet girl was the day that we found out about the "possible abnormalities." After that doc visit is when we began going between here and Jackson to monitor how things were progressing or not. I remember one visit where the doctor saw how severe Selah's lower jaw was...underdeveloped...non existent basically...and the doctor presented the "facts" and that survival without the jaw or the possibility of being able to establish an airway was very questionable. I remember hearing this and feeling paralyzed with fear...sick to my stomach...helpless with imagining this sweet baby struggle for air and for life. I also remember clinging to God with all that I had...not much at times...and just with all that I could do trying to trust....trying to hope.
During this pregnancy I wanted desperately to celebrate and to enjoy the experience. I was apparently pregnant to the world...my tummy and waddle making that known...and people would congratulate me and ask when I was due...all with good intentions...and yet not know how much it hurt. I wanted to reply with such excitement and hope and yet it hurt so much to think about or to be reminded that this sweet baby's life and survival was uncertain. I wanted to prepare and have everything ready and yet I was so scared that if I did that when I didn't bring Selah home I would only have reminders...of the baby I didn't have. I had precious, supportive friends offer me baby showers. At first I couldn't imagine having a shower. I prayed about it though and asked God's leading and strength in it. He spoke to me that by trying to be hopeful and by trying to celebrate...in faith, in trust...that it is a testimony to Him...that by being vulnerable and "risking" the hurt, the heartache, the brokenness...there is joy, there is peace, there is healing...there is faith. So, it was this time last year, on this past weekend that I had one of my baby showers. It was a precious and tender experience. I remember being so thankful that I was getting to have a baby shower...to celebrate. All the baby shower invites I'd opened...with tears streaming down my face...longing for it to be mine...and now it was mine...what a blessing. And yet, the uncertainty and unknown would come in waves. I would look at a sweet gift as I opened and silently ask myself and God if I would get to see precious Selah enjoy this. I remember organizing all the precious gifts into piles in the closet because I couldn't bring myself to set up a nursery. I wanted to have it all ready for Selah...for her to come home to her room...just for her. The hurt of not knowing for sure that this would be the case was too much though. So, her beautiful gifts and things we would need for her arrival stayed ready...just not out for a visual reminder...of the hope yet consuming uncertainty.
I look back at getting ready to deliver her and her delivery and our NICU stay. I look back over our arrival home and these past months...that have flown by. I look back over all of it and I'm...speechless...doesn't happen often...lol. I can say in all of it that I am in awe...humbled...thankful. God is faithful and God is sovereign. I continue to realize that no matter what, no matter how hard, no matter the circumstances, He is working and He is able to do "immeasurably" more than I can think up or try to make happen or make sense of (Ephesians 3:21).
Now this stroll down memory lane was also brought on by two songs I hear on KLOVE quite often. One song I've heard since getting home with Selah and it just brought me back to that place...of not knowing if she'd survive, if we would be blessed with this precious life, and if we were then for how long....it is by Matt Hammond...."Afraid to love something that could break, could I move on if you were torn away? I'm so close to what I can't control, I can't give you half my heart and pray it makes you whole...Won't let sadness steal you from my arms, won't let pain keep you from my heart...I'll trade the fear of all that I could lose for every moment I'll have with you...You're gonna have all of me...you're worth every fallen tear, you're worth facing any fear..."
There is another song that Spencer and I would hear a lot on KLOVE during my pregnancy with Selah. We both knew it was from God and it was "our song" for that season...by Josh Wilson..."Would you dare to believe that you still got a reason to sing because the pain that you've been feeling can't compare to the joy that's coming...the pain you've been feeling is just the dark before the morning..."
Now this song has been playing a lot lately when I've been listening to the radio. I know that it's much more than a coincidence. God has been reminding me here recently...despite this tiredness that I feel or the overwhelmed feelings in some of the decisions we're making in this season or will have to make...despite whatever today holds...that just as in the past, He is working....He calls us to celebrate, to soak in, to cherish this "morning"... it is here in Selah's beautiful blue eyes and in her sweet smile...our "morning" is always going to be orchestrated by His almighty, faithful, loving hands....where there is joy, peace, and healing....

Psalm 30:5 "...weeping may remain for a night but rejoicing comes in the morning."

Your prayers and support have and do carry us through so much more than you know...as I look back, your faithful prayers and love are such a big part of our story...thank you...we appreciate you!

Come Alongside...

Hi!
Hope this finds you doing well. We are good. I thought I'd start by updating you on what has happened recently. We had the CT scan scheduled a week or so ago. We've rescheduled it twice though because Selah has had a cold and the CT nurse said it isn't safe to sedate her with the cold and extra secretions and mucus. So, we moved it to March in hopes that she'll be all "clear" from the cold. She is feeling better, thankfully! We are truly thankful that she has been so healthy...such a blessing! We will take the cold over what could be...just have to remember that on those nights of up all night suctioning with no sleep, ha. After the CT scan we will meet with the doctor and team to discuss their recommendations, timeline, etc, for the jaw surgery. It's just been delayed a little bit. Honestly, I can say that I don't mind. I'm so thankful for this time at home with her and just was relieved to not have to have her go have sedation, a short hospital stay, etc. I know it is something we have to do but I believe God knows the desires of my heart and is working it all out....I'm thanking Him. :)
Now on another note...
I've been thinking lately about the support and prayers we are honored to have in our lives...thank you! I've also been seeing a consistent message in my devotional, messages at church, and in other sources. I'm humbled by God's persistence and willingness to pursue, to teach, to grow me...if only I let Him. God has been reminding me of the power of prayer and the power of not only embracing the support but also giving it...caring other's burdens. I remember shortly after my second miscarriage I was given a book that was such a blessing...healing. I remember reading in it about different seasons in life and how God brings people along during the different seasons....I'll try to explain. It mentioned that sometimes He brings others along to hold our hand and walk beside us, or sometimes to lead us in their experience and their faith, or sometimes to go behind us...supporting and reminding us that we can keep going. It mentioned that sometimes these individuals will be there through many seasons in our life and sometimes they may be there but then fade as we go from one season to the next. I've learned that this is true...at least in my life.
I know there are some friends that I can identify with and connect with no matter what, no matter how long. There are some sweet friends who at one time I've been so close to but then as seasons come and go have realized that the connection is not as strong as it once was. There have been some amazing friends who have offered comfort, support, love, and hope...only through what they've experienced. There have also been friends and others who have prayed in faith on my behalf...when I've not had the faith to pray. And then there are some precious friendships that I'm ashamed to say I've let fade only because I didn't maintain or invest in the friendship...didn't let them know how much they meant to me. God has also taught me though that at some seasons in life it is ok to "let go" of some relationships/friendships and to cherish the blessings from them.
Now, all this is to say that I'm learning and am humbled by the friends and relationships that God has brought and brings into my life. He is teaching me to embrace them and to honor them but to also know that He orchestrates it all...He knows the timing and the ways...He knows who and what He we need to come alongside us...
I share this because there is a sweet friend that has been such a blessing to me. She reminds me so often of the prayers she is lifting up for us. She has shown so much love and support and I'm truly honored to call her friend. There is a connection between us...unspoken but understood...that only God has allowed to be there...in His divine grace and power and ways. I haven't asked her if I can share...God has been laying it on my heart...so hopefully she'll be ok with it.  :)
This precious friend is Crystal Keller. Crystal is currently pregnant with a sweet baby girl...Kelsie. It hurts my heart to say that things haven't been the way that Crystal would imagine this experience would go. I don't want to take away from her sweet words...as she shares her heart and story. I do want to say though that the "facts" do not look good for her sweet baby. Crystal is daily faced with the uncertainty, the unknown, the "battle" to not be consumed by the "what if" or the heartache of thinking of her sweet baby's life fading away. Crystal also faces daily the longing to have and love this sweet baby and the desire to be Kelsie's mom. So, I ask that you would please check out her blog and just let her fill you in...www.nomatterwhat-ck.blogspot.com 
I share this with you in hopes that you will come alongside Crystal and offer your prayers...on her behalf...in faith. We are so blessed to have the honor of coming before a Heavenly Father who hears our prayers...spoken and those of our heart...our God who know our brokeness, our desires, our hopes...our God who hears when we pray in faith on behalf of others...when they may not have the strength or faith to pray. Although it hurts me to know that she is currently going through one of the hardest times in her life, I can also say that in the name of our God...who is mighty to save, healer, sovereign, faithful...that His hand is holding her...He is working. I ask you to check out her story and to come alongside me, to come alongside her and to pray....

***Disclaimer*** As you may have figured out...if you're a friend, aquaintenance, the Walgreens gal, you're never safe...you never know when you'll be a part of a post...:) Just kidding..not really!! :)

Much love to you!!!!

Just For You....Babb :)

 Her favorite pose...leg up in the air kicking :)

Much love to you all!!!!

And PS...I started out with the big pics, as you can tell, but as I added more pics, I couldn't figure out how to enlarge them anymore...so hope they show up ok...ha ha..sorry :)