February 24, 2010 Such a rough time...

I don't know... tonight is just rough. I am having a hard time at the moment with where Ali is regarding her medical status. She is struggling so much. I just... my heart is breaking for her. I am so frustrated. I just want to rush down to the hospital and scoop her up and just hold her.

She had her tracheostomy on February 16th. She has been in so much pain since then. She has been struggling to hold her sats, keep her co2 levels down and now the stupid trach is not even the right one. She had the initial one changed yesterday (Feb 23rd) and in the past two days had two more placed, trying to find the right fit. Scott said the Pulmonologist came in and was very upset at the ENT as they chose to place a pediatric sized trach. FINALLY they have realized she needs a customized trach. The way Ali is, EVERYTHING should just be customized. They should know that if it can go wrong with her, most likely it will go wrong. She is very touchy, very specific, very everything. That is just her.

Lord, help me. Help my heart. Help me to focus. Help me to hold on to you. Onto your promises. Help me to continue to lay my daughter at your feet daily; sometimes hourly. I just hurt so much knowing what she is going thru. The stress is too much at times. I know thru you, I can do all things, but I am scared. I love Ali so much and just want her home, in my arms, as my daughter.

February 7, 2010

Like everyone who has ever blogged, this is my first. I'm not sure exactly what to do, what the point is or even if I care to do this. I think I want ananimity but also a place to just dump my thoughts, feelings, frustrations...

My daughter is very sick. She was born early and is now going to have a tracheotomy placed in the next few weeks. My husband and I are in support of this but are nervous about everything that will go along with it. We love her so much and in no way can imagine life without her; we are just trying to understand what life will be like when she comes home.

I am praying daily, hourly for the Lords peace throughout this process. Praying for comfort, direction, understanding and mostly for His loving arms to stay wrapped around me and my family. But, I'll be honest... I am scared. Scared about the unknown. Scared about all there is to learn before she comes home. Scared about when she does come home and all of the things that could happen. What if her ventilator fails, what if the power is lost and we have to bag her in order to keep her breathing. She is only a little over 3 months old but truly less than a month old, corrected.

She won't be home until at least October so there is time. I am trying to be kind with myself, understanding this is part of the process and that the journey is truly just beginning. I normally just "muscle thru" whatever situations come up, but with this, I can't. I need to just be honest. Lay at the Lords feet and let Him pick it up. I can't ask my friends or family to carry this. I don't want to come acrossed as the whiny person that is sucking people dry. Maybe this is my motivation. To just have a place to "vent" and sort through it all and then let it go...