Detailed Update and Praying for a Boring Week

You turned my wailing into dancing;

you removed my sackcloth and clothed me with joy,

that my heart may sing your praises and not be silent.

Lord my God, I will praise you forever.  -Psalm 30:5

I wanted to begin with this passage again because I don't know if I've ever experienced a verse so personally and profoundly before. I can tell you that this is me to very core right now and it is certainly not because of anything I did but what God has done in me (in us actually as I think I speak for Sarah in this as well). I am the kind of father that has trouble sleeping if one of my kids has a cold or fever; I just want to fall asleep right next to them in case they need daddy. So, to have a baby in the NICU and not know her future was torturous... at least in the natural. But I cannot stress to you all enough how much your praying has meant to us as a family. It has done a real and tangible thing in our hearts by bringing a peace that goes beyond understanding; peace had no business being anywhere near us the last couple days but God used the prayers of so many people to quiet our hearts and minds and just let us wait on God.

Our baby came out of the OR with a tracheostomy... but we had peace, even excitement, joy! Our little girl has a hope and a future! She may need a feeding tube still, we don't know that yet, but we still have peace. Part of that peace I also attribute to testimonies of people that have gone through some similarly tough battles in their lives and shared with us in encouragement and wisdom born of experience.

On to facts and details, what we know and don't know, current prayer needs, etc.

• She has a tracheostomy, which, for those who don't know and haven't googled it yet, is a hole cut in the front of the neck to provide an airway to the lungs that bypasses the mouth and nose. In Brinley's case the formation of her tongue made this the best option since, although her lunges are fine, she simply had to work too hard to get the air into them. The trach provides a stable (though admittedly intimidating for us) way for her to grow until her tongue either develops on its own or can be repaired by her ENT doctor.
• Facts/Issues/Prayer Targets: The front of her tongue is not very well developed and was flopping back during breathing, occluding the airway. The back of her tongue is more developed but we're still learning just what the shape of things are in there. We'll get to meet with the ENT in his office at some point and look at some models of a tongue to get a better idea. Her epiglottis seems to be ok. She has a cleft in the soft tissue at the back of the roof of her mouth. Her gums seem to also have some problems so she'll probably need some sort of dental work at some point.
• The trach in place currently will be in for about a week and is sutured (stitched) in place until the hole itself heals (think of pierced ears) and then the trach she will go home with will be put in place (held in place with a velcro type of collar)
• She is currently sedated so that she doesn't move around too much to allow for the trach to heal quickly. Feeding via a feeding tube in her nose will begin hopefully tomorrow as anesthesia tends to stop up the digestive system for a bit and it needs to kick back in before they begin giving her milk again. 
• After that second trach is in place they will attempt to feed her by mouth. This is the next critical item in the waiting game and should be enemy number one on everyone's prayer hit list for Brinley: no feeding tube necessary!!! We want to be able to either have Sarah nurse her or bottle feed her. This will be made difficult by the problems with her tongue and the cleft in her palate.
• Please pray for Sarah in regards to the care we will have to give with the trach at home. I am doing fine with the thought of it but it bothers Sarah (medical stuff and bodily fluids have always made her very squeamish.) more and she needs your prayers (and encouragement for those of you with experience)
• We continue to pray for complete healing! We are still believing that God can shape and form her tongue and cleft and that the trach could come out miraculously quick. From where we were a week ago when we first got the news over at St. Peter's to where we are now is already so amazing. We were given news that she might have an abnormally small trachea, no tongue and no epiglottis. We didn't know how she could live with that list of problems. Now, we know she'll have a future. She'll breath and eat normally some day, I believe that. It might be a long road but it's one I know will still be filled with joy and dancing and a heart that will not stay silent.
• All the nurses and doctors have been so wonderful and caring for our baby girl. The ENT was so great in talking to us and was so hoping she would be able to come out with no trach in place but he really feels this gives her the best chance.

Once again, we love you all and thank you for the prayers. Keep them coming. This will likely be a "boring" week as she is sedated and heals but keep praying for our little Brinley Noel. I may not post for a few days unless something comes up. Praise God for all He's done already! Thanks for dancing with us.