Sunday, April 24, 2011

Hi,
Selah's surgery went well. She has been recovering since then. They are still trying keep her resting but have decreased her pain meds. They removed her IV today and they are slowly increasing her milk intake through her G tube. She has been tolerating the feeds so far and we're thankful. She has some chest congestion but her oxygen and respiration stats were better today. She has been pretty agitated the past few days but we're hoping she calms down as time goes by...she seemed to be more calm today. We are so thankful the surgery went well and we are just continuing to pray for healing and health over her. When they had to restart her IV before surgery, they had to start in her scalp. They tried several times before success and have had to change IV sites a few times. Well, each time they did this they shaved patches of her hair off. Needless to say, her pretty hair is gapped up!!! I let the nurses know I was not a fan :) and they kindly referred to her first haircut as "NICU haircut...where they leave their mark."
So, its been an exciting few days. We wanted to give you a quick update. I'm trying to type this from my Blackberry..more challenging than I thought. We will fill you in again soon. Thank you for your prayers! Love ya

Thursday, April 21, 2011

Prayer Request

Hi,
It seems like too long since I've gotten on to give an update...sorry. Our days consist of going between the Ronald McDonald house and visitng Selah in the NICU. I intend to get on and give and update but I end up having a really hard time leaving her and often end up staying until I'm too exhausted to think of "thinking" and typing..make sense?? I haven't meant to neglect keeping the blog updated though because I know it is a way to keep all you who care in the loop. I appreciate your understanding and continued support though. :)
So, I wanted to say thank you for your prayers and support. We are truly humbled and so thankful for all the love that has been shown to us...thank you! We wanted to ask you to continue to think of us, specifically Selah. She is going to have surgery tomorrow, Friday 4-22-11. She is scheduled for some time mid morning. They are going to put in her G tube...be the way she is fed. It is an "operation" in which she will be put under complete anesthesia. We are praying and claiming blessing and protection over her...the fear and "what if" tries to creep in though. We do appreciate your prayers. I will give an update as we know how it goes tomorrow. Again...thank you...you have no idea how much your prayers, comments, texts, visits, and support mean...we love you!

Tuesday, April 12, 2011

Update...Finally!

Well,
I have intended to get on and give an update...but hasn't gone as planned. We've had long days and I haven't had consistent access to the internet. I found out I can access it at the NICU waiting area. That is not my ideal location...like to be in quiet and get "in the zone." :) I will just have to adjust though.
So, Spencer and I are staying here in Jackson at the Ronald McDonald house. It has been a blessing. Selah is in the NICU. They are taking good care of her and watching her closely. We've been blessed to have doctors and nurses that are compassionate. Of course there are times when it is still so hard to leave her in hands that aren't ours. It kills me to leave her there. I think about her care and if she is awake or upset and want to be there. I want to be there to comfort her and to love her and to reassure her that she has not been...just abandoned. It is a struggle but I try to just pray over her and pray against all those worries and concerns that surface.
She has her original trach in now. They are talking about changing it out this week. She will keep the trach because it is her way of breathing. She is breathing on her own but she still has some air/oxygen support. Her oxygen levels, breathing, and heart rate have been staying good. She has a NG tube now...a small tube that goes into her nostril and down her throat to her stomach. This is the way she receives milk/nutrients. She just got that put in today. We are praying for successful feedings with it. We should meet with the facial surgeons within the next week or so to discuss surgery for her. They call it a jaw distraction. We don't know what it will entail or when they look at doing it. We will just wait to meet with them. We met with the genetic specialist and they told us that she has Nagers Syndrome. It is a rare syndrome. Some characteristics of the syndrome that she presents with are the small jaw and lack of thumbs on both hands. Hearing difficulties are possible and they have been checking her hearing and don't have any definitive information yet. They will also check to see if reflux will occur as they increase her feeding...can be associated with the syndrome also. There are still some concerns that can arise but for now those are the main ones being looked at. They did say that it should not affect her cognitively or developmentally. There is still so much that is uncertain. We are truly trying to take it day by day...moment by moment.
We look at her beautiful face, her precious lips and nose, her long fingers and toes and are in awe...so precious! We are so thankful to get to see her and yet it hurts so bad to think of her hurting or having to go some of things she is or might have to. I do have to let God gently remind...again and again...that He did "knit her together and form her" (Psalm 139) and He knows about all of it. I don't like it or understand it, and I have a lot of unanswered questions. I do believe God's promises, I do hope in Him, I do trust in Him, I do thank Him for His presence...I pray and my heart cries out for God to continue to help us to rest in Him.
We are truly thankful for your prayers and support...thank you!

Thursday, April 7, 2011

Selah is here!!!

Selah Blair Taylor arrived Monday, April 4th. She made it here though at 5 lbs, 7 oz and about 19 inches long. There were many answered prayers Monday and it was evident God's hand was at work. The exit procedure was a blessing and successful. The were not able to intubate Selah because her jaw is so small/recessed and there just isn't room to establish an airway. They then moved to the tracheostomy and had a difficult time with that. They did get it in though and established an effective airway for her. She of course was hooked to the placenta for all of this and did not lose any oxygen. We are truly thankful for the results of Monday's procedure and know it is all from God's hand...answered prayers.
She is being closely monitored in the NICU here at UMC. She, as well as us, have been surrounded with a team of compassionate and knowledgeable nurses, doctors, etc. We are truly grateful and know yet again it is an indication of God's mighty hand at work. She was moved off the vetilator today and the CPAP (continuous postive air pressure) machine was connected to her trach. So she this is allowing her to breathe a little more on her own. Her oxygen levels and heart rate are staying good. She does have her hands and feet restrained to keep her from getting to the tracheostomy site and causing damage. She is also being given a sedative to try to help her rest and keep her from getting too stimulated. They want the trach site to form/heal and so they have to take these precautions. It is so hard to see her like this but we try to remember is to help her and to help the trach get "set" where it can form and heal.
We are so humbled and amazed to be able to meet her and to know she is our precious gift from God. She is so beautiful. I just look at her and am truly honored and thankful for this experience...a miracle from God. We go visit her regularly but it is usually a hard visit. We are so thankful to see her there and to here the good reports. I see her little hands and feet restrained though and it hurts me. I want to talk to her, touch her, sing to her, read her verse in Psalms to her but it seems to get her worked up. I tried to sing to her and she started squriming and turning red and trying to cry...the thought of her struggling broke my heart. Spencer tried to talk to her and she just eyed him and squirmed to try to get to him and got so worked up. We just want her to know we are here and we love her and that we haven't just left her all alone. But then she gets so stimulated and stirred up...exactly what the doctors don't recommend. So, it has been very emotional. I try to go and just look at her and pray her verse in Psalm 139 over her...usually with sobs and tears streaming down my face.
We are trying to just be thankful we can see her and pray over her. We know God has placed amazing doctors and nurses around her. We know our prayers as well as many others on her behalf are being lifted up. We are trying take it day by day and to celebrate all of the blessings along the way. We cannot thank you enough for the prayers and support for us and Selah...thank you! I have definitely had some prayers this week that have been just silent...just quiet before God, resting in knowing he hears my heart and resting in knowing so many are speaking those words I don't have for us...thank you!

Saturday, April 2, 2011

Jackson...here we come!!!

Well, we head to Jackson tomorrow to stay the night and go for the delivery of Selah on Monday! We are not sure what to expect...excited but nervous. We are just praying that it is evident God's hand is at work. I have had some anxiety about the uncertainty but I am trying to get rid of those thoughts. I had a friend share some scripture with me not long ago and God spoke to me about our story through it. It is in 2 Chronicles 20:1-30. Now I am going to try to give a recap on what is happening and then how God related to our situation....bear with me. :) You really need to check out the scripture yourself though...I don't do it justice!
It has Jehoshaphat as the leading man. Because his name is not so fun to spell I am going to refer to him as J. from here on out. So we have J. finding out that a "vast army" is coming to attack him, his people, and his land. Now as I read and thought about it, the situation seems similar to ours. Here J. is with this news that probably intimidates him, makes him feel helpless, worries him, and he has uncertainty that he is facing. He doesn't know what to do. Yet, he seeks God...actually scripture says he "resolved to inquire of the Lord."  I am sure being human and all that he did fret a bit and have his moment, but he also looked to God and realized he didn't have the power or control and he called on the Lord's name. He resolved to not let his human tendencies, the fear, etc. consume him or his reactions and he looked to God. J. cries out to God, "...we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are upon you." (20:12) The scripture then tells us that God answered J. and that God instructed him, taught him, counseled him and his people. God told J. that the "battle" was not his to fight and that what he needed to do was to trust and obey. "You will not have to fight this battle. Take up your position, stand firm, and see the deliverance the Lord will give you. Do not be afraid and do not be discouraged. Go out to face them tomorrow and the Lord will be with you." (20:17)  J. and his people did obey and God's hand at work was evident. God's power, purpose, and glory took center stage...not anything of J. Scripture also tells us that after the victory in battle that J. and his people were able to acquire so much plunder that they couldn't carry it all away at once...an abundance. (20:25)
So, how does all this relate to our story...let me try to relay it. As I read it, God spoke and pointed out how relevant it is to what we are going through. Just as J. faced a "vast army," we face a situation that seems so "vast" and full of uncertainty. Just as he probably felt intimidated, helpless, hopeless, we are trying to put aside the same feelings. We, as J. did, want to look to God and not ourselves...with the realization that it is not our strength or power that is sustaining or at work. J. trusted God and obeyed and saw God's mighty hand at work...on his behalf. We are trying to trust God, hope in God, obey God. We have seen and do see that He answers prayers, He speaks and teaches, He provides grace that is enough when that is all we have. God spoke to me that it is not the "vastness" of the situation, the worry, the uncertainty that matters. He spoke to me that it is not our "battle." He spoke to me that it is Him that is in control and it is Him that is working. What He calls Spencer and I to do is to keep praying to Him, to keep looking to Him, to keep trusting in Him, to keep hoping in Him. As we do, He is working and it is His glory, His purpose, His power that is evident.
As we go, we are trying to rest in this and yet "stand firm" in this truth. Just as God was with J., He is with us now. He is with Selah. He is in all of it. At the conclusion of J.'s story, it says that "God had given him rest on every side." (20:30) My prayer for us is that we have that same "rest." Resting not in the fact that it all works out according to our plan or desires but resting in knowing that we are held in God's hand.
Much love to you, thank you for your prayers!!!