Today was a bad day. I woke up in a bad mood and it just got worse. Maybe it's the hospital grade recliner I've been sleeping on the past two nights and am about to again tonight? Maybe its the fact that in order to hold my daughter, I have to untangle her from about 14 different chords, and then always manage to mess something up and the machine goes off? Or the fact that I have to stare at Lia's blue face, blue hands, blue feet and watch her little chest struggle to get air? Could be the fact that I feel like I have to keep up on as much info about Lia as the nurses do, just to make sure that with every shift change the new nurse we get knows absolutely everything there is to know about Lia and her condition, the dose amounts for each medicine, the correct flow of oxygen, or her oxygen saturation levels, and what they cannot go below.I haven't seen my son for more than a half hour over the last three days. (I know hes in good hands, but it's still hard), I sit in an 8x8 section of the hospital sectioned off by curtains, and listen to other babies just as sick as mine cry and suffer. THIS SUCKS.
Man, it felt good to get that out.
I could go on for about 12 more paragraphs, but I'll spare you.
I hate to be so negative, because I do have a lot to be positive about. The huge amount of support that we have received from family and friends has been amazing. Friends coming to sit with me at the hospital to let me cry and vent, my in laws who are here to watch Jack, friends dropping off meals, constant texts and calls from people wanting updates on Lia, the fact that her condition is curable, and once she is done with her surgery(s) (yes, it might be more than one) she will be a healthy little girl with pink skin, who has no problems breathing. And the most important thing, is the faith that I have in God, and that He is all-knowing, makes no mistakes, and will carry all these burdens for me. If nothing ever went wrong in our lives, there would be no reason to have faith.
Lia didn't do so great today off her oxygen. They tried the mask on her a couple times to help her catch back up on her breathing, but it took too long for her to recover, so they made the decision to put her back on oxygen for the rest of the night. We are going to take her off again tomorrow morning and see how she does with breathing on her own with a higher dose of meds. Her cardiologist warned us today to be prepared for a trip to Kansas City tomorrow if things go like they did today. In Kansas City, they would either choose to monitor her a few more days there, or proceed with surgery.
Chances are, if you are reading this blog, you are already praying for us, but just in case you aren't, please keep us in your thoughts and prayers as we go through this. This is the hardest thing Ryan and I have ever been through. In the meantime, I'll be sitting here, stroking my baby's hair, staring at her monitors, thinking of Jack, wondering if we'll move out of the ICU tomorrow, of if I'll be taking a helicopter ride to Kansas City.
On a much much lighter note, isn't this an adorable picture of Lia? My mom took it :)
Man, it felt good to get that out.
I could go on for about 12 more paragraphs, but I'll spare you.
I hate to be so negative, because I do have a lot to be positive about. The huge amount of support that we have received from family and friends has been amazing. Friends coming to sit with me at the hospital to let me cry and vent, my in laws who are here to watch Jack, friends dropping off meals, constant texts and calls from people wanting updates on Lia, the fact that her condition is curable, and once she is done with her surgery(s) (yes, it might be more than one) she will be a healthy little girl with pink skin, who has no problems breathing. And the most important thing, is the faith that I have in God, and that He is all-knowing, makes no mistakes, and will carry all these burdens for me. If nothing ever went wrong in our lives, there would be no reason to have faith.
Lia didn't do so great today off her oxygen. They tried the mask on her a couple times to help her catch back up on her breathing, but it took too long for her to recover, so they made the decision to put her back on oxygen for the rest of the night. We are going to take her off again tomorrow morning and see how she does with breathing on her own with a higher dose of meds. Her cardiologist warned us today to be prepared for a trip to Kansas City tomorrow if things go like they did today. In Kansas City, they would either choose to monitor her a few more days there, or proceed with surgery.
Chances are, if you are reading this blog, you are already praying for us, but just in case you aren't, please keep us in your thoughts and prayers as we go through this. This is the hardest thing Ryan and I have ever been through. In the meantime, I'll be sitting here, stroking my baby's hair, staring at her monitors, thinking of Jack, wondering if we'll move out of the ICU tomorrow, of if I'll be taking a helicopter ride to Kansas City.
On a much much lighter note, isn't this an adorable picture of Lia? My mom took it :)
Comments
This post made me cry...I so wish we could just fast forward to the end of this journey so that you and your family would be spared! Your strength and ability to look on the bright side is amazing! Lia and Jack are so lucky to have such a loving and devoted Mom! Hang in there and just think about how much you will learn in the end. Just don't even think about changing professions to a nurse;) We love you and believe in you! Please let us know if you need us! I have good listening ears and have great shoulders to cry on. Thanks for keeping us up to date! You have been on my mind all day and I have been watching for an update all evening. Good things are in the future so hang in there!