04/13/12 Fire and Water

Amist Amelya's journey to being a healthy baby girl I have decided to blog about her journey. I have to start amist everything, but will play catch up once things get to a stopping or at least slowing point.

Fire...

Today was overly emotional as has everything since the 9th when I first laid eyes on my beautiful baby. Michael and I are an overly strong unit physically and mentally and I think alot of people misinterpret the strength we have as a couple... since Amelya's birth Michael has been the person to make me eat, make me take care of myself and make me slow the heck down. Michael has also encouraged my journey to get closer with God. What kind of man can do that and be a father??? My husband!!!

The morning started off with neonate report. This is the second report I have attended and it hold merit because all the residents, attendings and family practitioners gather around and talk her case. Amelya had a renal, bladder and a head ultrasound which all turned out negative and I am pleased with that given her heart condition. Amelya as also been on TPN (nutrition though the vein) for two days now and is tolerating it and holding her own however her potassium is slightly decreased and for this reason she now has a banana bag and lipids (still like TPN). I won't be coy, but I am pretty upfront not liking this TPN with the constant side effects long term. The neonates think the TPN will NOT be long term but I remain hesitant even with constant labs (bmp). Amelya was also put under a bili light for jaundice because of the ongoing flux of her levels... I was kind of happy but she will remain very fluid restricted because of her heart (not abnormal). At this point I was told to wait on the big guns for a surgical date (cardiology docs). The neonates also decided to place a PICC (I am totally ok with that) for use in the surgery and for other labs- she has a UVA (umbilical iv) that looks ok, but this will help to go with a stronger TPN source should that be a need.

The afternoon arrived and we spoke to the cardiology DOCTOR not the surgon. The sum of her diagnosis is that she has coarctation of the aorta but the length of the narrowing is alot worse. The LV (left ventrcile) has fixed itself.... NOW the biggest fire I have dealt with.

Amelya has a really small and bad aortic valve. We are told we are unsure of the procedure to deal with it... we also dont know the fix date. I am told to plan on a month (including post op).

Every part of my insides really wants a new heart. I cant really outweigh the pros and the cons because I do not get that choice. I am happy she is being fixed but I am sad she has to get all of this done. I feel like I am getting to the point where shutting down is a better option then being here because everytime I turn around I hear another issue... it is fustrating and annoying and I do not think there is enough Xanax to help me though this. I think all this swelling and whatnot is not helping matters either.


Water:

Michael and I have decided to play all things though this blog. We also decided that from now on she will only be held by us. In addition we have decided to place more faith in God and how he works and how to be better at the whole faith and trust. Most importantly as a couple we have decided that for one hour a day we will be togeather to support and love one another ALONE... we will use the time to nap, talk about Amelya, eat, make decisions about how to proceed and how the day went thus far. These are small decisions, but for now it kind of puts some of the fires out....


I am super tired and will return to the blog later but for now here is a small update.