Be truly glad. There is wonderful joy ahead,

even though you have to endure many trials for a little

while. These trials will show that your faith is genuine.

It is being tested as fire tests and purifies gold-

though your faith is far more precious than mere gold.

1 Peter 1:6-7

God will not permit any troubles to come upon

us unless He has a specific plan by which great 

blessing can come out of the difficulty.

Peter Marshall

I write this post today with a sad heart. Last Friday we received a call at 7 am that Clara was heading  to the OR for an emergency bronchoscopy. We rushed to Chapel Hill, but learned that they had already performed a tracheostomy when we got there.  Needless to say I fell apart. The very thing that I desperately prayed to not happen for many months, had when I was on highway 40 trying to get there. I had no time to prepare myself. I understand now that this is the only way for her to survive, but the idea on Friday (and still now) that they cut a hole in her throat was and is still so unbearable. 

On Wednesday night at 11 pm Clara self extubated herself, pulled out her tube. They put her on bubble CPAP, and called us Thursday morning to tell us the good news that she was doing good. This is a photo that the Nurse Practitioner sent me. 

It was Madeline's birthday that day, and we were so excited that she was able to stay on it then for 8 hours. I had not told anyone except family on Thursday, just to be cautious. This was her 6th time, off the vent so we were still not confidant it would last. Thursday night after Madeline's family party I called the hospital to see how she was doing. The nurse said she was having a difficult time breathing and they were giving her more steroids to try and keep the airway open, even though her lungs were ventilating fine. ENT specialists had come that evening and said she would have the bronc (that were so desperately waiting for anyway) on Friday now. Friday morning at 5 am things had gotten progressive worse and she was taken immediately that morning as they called us at 7 am. 

The procedure had taken about over an hour. The report was that Clara has severe subglottic stenosis (narrowing of the airway) with significant scar tissue. They feared she would not be able to re intubate, so the only choice was a tracheostomy. The ENT surgeon had also said she would have to have reconstruction surgery when she is a year or so. She would have the trach until then or longer. 

We took these photos when she returned to her room. We were then for the first time able to see her beautiful face. She is still connected to the ventilator, but without the ET tube down her throat. She now has a more secure airway. Friday was given a paralytic to paralyze her for 24 hours and will be sedated for seven days until the trach area heals. She still has lung disease and will stay on the vent until they are able to ween her and put on humidified air. 

All nurses, and doctors have assured us this is for the best and that Clara can develop like a normal baby and that they will teach us everything we need to know on how to take care of her.  When she is healed, after her first trach change, they can get her out of the bed and we can hold her and she can sit in a bouncy seat and swing. OT will soon come and work with her on moving and doing more developmental stuff. When she gets off the vent SPEECH will work with her on drinking from a  bottle. This may or may not be something she can do. 

Last night our visit was rough. She was very uncomfortable and is now needing more support maybe just from the surgery? Her trach ties are beginning to break down her skin, which they are worried about. Even though she is sedated she is awake knocking off her vent. Jason is with her today. 

This past weekend we spend Saturday and Sunday afternoon at Great Wold Lodge for Madeline's birthday with my family. This was also our Christmas present to each other and had been planned for a while. Maddie was so excited we just didn't have the heart to cancel even after the surgery on Friday. Some one had told me months ago "Continue to love each other even though the pressure on your little family is enormous!"

For Madeline her life still needs to go on with some sort of normalcy. The time away gave Jason and I some too, even though we had wished we could be in both places at once. Clara was always on our minds. 

I think sometimes I just feel that  I should be sad and worried all the time, and that being happy isn't fair to Clara. I struggle with that a lot. I guess anyone would. We went away for Madeline, but found ourselves happy and laughing with everyone. It was probably good to escape reality  for 24 hours.  

Although, like I had said last night with Clara was rough. Jason and I were very discouraged, hoping to find her doing better. I felt out of sync in the hospital, and just emotionally a mess. I have always just kept going, but today I am just staying still at home. Only a few other times I have done this. We need to take care of ourselves for Clara, so Jason is there today and me tomorrow. 

I wrote the above scripture and passage as a reminder to me that GOD is faithful. But I am trying the best I can to stay positive and live in faith. 

Please do not read this as  I am no longer grateful for what has been given and what GOD has done for me and our family. I do praise him for our baby Clara, that she has survived the worst and has and still continues to bring us joy despite it all. Someone had written me weeks ago with advice about a prior post, with what I think was good intent? It left me thinking perhaps I am not thankful enough in my blog. 

I want to assure everyone that I am and have always been just so blessed with my days and months with Clara.......still just wishing it could be easier.  

 My heart is sad TODAY and I pray for strength to press on.