Fall seems so far away...

It really stinks when what you know is coming finally decends upon you. In my gut, I knew the new discharge date included September, but to finally hear it tonight... it felt like the wind was knocked from our sail. Both my husband and I are so "done" with Ali not being home. We are desperate for this date. To just put her in her car seat, load her up and drive away from the hospital. It has been a wonderful facility and the Lord has placed people in her life to sustain her life while being there, but truly... we are so ready.

The new Pulmonologist told us tonight that the "new" date would be September. I hear this and automatically say "October". I just don't feel it right now. I truly don't even see a date and I think that is what scares me the most. We have had our training, I have been able to stay with her several days in a row, we feel confidant in our ability to care for and keep her safe... what gives? What gives? I KNOW "what gives". HE is in control. And I wouldn't want to try and take that for anything. Not even if it meant having her come home early. We have placed Alicen at the Lord's feet many, many times. For some reason, it's getting harder leaving her there.

Lord, I know you love Alicen even more than we could possibly imagine. I KNOW you have her, will take care of her and truly will do what is best for her. I can't help but feel you are preparing us to let go of her...

Wearing down...

So much to catch up on and yet, I don't have the energy. Ali has been up and down with her trach. She is great and then has major setbacks. Already in the past 3 weeks she has coded twice. Just yesterday it was a full on, chest compressions code. The crazy thing? She is HEALTHY! She is not sick, does not have "gunk" in her lungs. Just has a really, REALLY bad airway that does not agree with her tracheostomy. I KNOW the Lord has her. I trust this with everything in me but dealing with it and being her Mom... seperating myself from her is becoming increasingly difficult. We just SO want her home. We are SO READY for her to be home. Sometimes it is so overwhelming and lonely. Sometimes I just want to fall apart and yet, it's so not worth the energy. My husband and I support each other. If one of us breaks, the other has to pick up the pieces. That's fine in theory but if we broke every time she had a bad moment, we would NOT be helping anything... or anyone. It just sucks. I want my baby home. I want to simply pick her up and hold her. To be free of her tubes and be able to breathe on her own. No one knows if she will ever be able to or simply make it home... After 9 months... I'm wearing down.

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...