It has been a little while
since I have last blogged
and I am so very sorry to
all who come by to check
for an update. Lily is
doing ok, she has her ups
and downs, there are
moments her lips turn
purple, she is breathing insanely fast, and then there are moments where she is breathing so shallow I have to put my head up against her chest to make sure she is breathing and her heart is breathing. I am wating for a new stethoscope to come in, the one from the hospital finally broke, which isnt a bad thing, let me tell you...I will put it in her keepsakes box but I can not wait to have a real one. Who would have ever thought I would be excited over getting a new stethoscope? I wouldn't have! As I type this, Lily is sitting in her bouncy chair watching the Deadliest Catch, I have to tell you, she is enamored with this show. We indemand it with the cable box and she can just sit there and watch the same 3 episodes over and over. I think it is the narrators voice that she loves. She has a tie in her 2 favorite shows...Ace of Cakes or the Deadliest Catch....who would have thought? I know she shouldn't be watching TV, but in all reality I didn't start this bad trend, it started at the hospital, and since being home it is company to her. I feel horrible that I cant give her all the attention she wants all the time, but such is life when there are other siblings in the house. I can not let her cry long so she wins attention there but she does pretty good by herslef. she will let you know when she is done, and trust me...there is no way you can ignore her then. Jeesh...where she got that temper from is beyond me....lol...wait...just kidding, she got it from me. She is way cuter then she needs to be, she smiles and it melts your heart, it is like a ray of sunshine that warms you from the inside out, you cant help but smile back when she grins are you.
JUNE 25th~~ She had her Cardi apt this afternoon. We did not know she had an echo before her Cardi apt so we ended up running late afterwards. Unfortunatly we were unable to get the readings from the Echo because it was getting late and they were having computer issues, so hopefully tomorrow or Friday we will get the results on that. I am nervous about it because Lily has just been a little off as stated above. He BP came back fine today and her o2 was 94 which is a little low for her, she has always hung in the 98-100% range, they dont want her going below 92% so as of right now it warrents no action other then watching. We are going up on her beta-blocker hoping it will help with the fast breathing, shallow breathing, blue lips, etc, but we wont know if that is what is causing it until we get the echo back. So much relys on it and I am trying not to get to apprehensive about it. You hear words like Narrowing and your mind goes into over drive. It was not a critical one but heck, it wasnt critical when we left the hospital the first time and then 2 1/2 weeks later we were back and she was going in for an emergency OHS, with the surgeons and doctors in shock over how quickly it all happend. So as the parent of this fraigle yet strong little girl, you can't help but sit on pins and needles anytime anything like this happens.
You try to not cry to much, not to let your emotions of fear overrun your everyday life, but you can't help but think at least once a day, if this is our last day together, have we done all that we have wanted to do with her so far. I sometimes wonder if those thoughts will ever go away, if they will ever die out or calm down. I feared death until recently, until Lily. I no longer fear my passing but I fear hers. You cant help but look at them sometimes and think of them as a ticking time bomb and when those thoughts do flood your mind, you lift your head to the heavens and ask the good Lord Almighty to wipe those evil thoughts away. To keep them as far from your mind as possible. Evey heart parent wonders why the Lord chose us, we want to know why he thought us the strong ones in the crowd.
As I sat and watched everything in the doctors office today I couldn't help but feel sad. As I sat with Lily on my lap, I watched a pregnant couple walk out of the doors from their apt, and the woman was crying. I remember that day oh so cleary,(when we found out the grim details about my princess's heart) the day my world came crashing down around me and there was no one there at that moment that could explain it all to me. Their shoulders hung with heaviness, and their walk was that of loneliness. When I say loneliness I mean it in the way of, they felt alone in that moment in time. The woman and I made eye contact, I did not smile, because a smile was not the right thing for that moment in time. I nodded my head in understanding, and I ever so gently rasied Lily up in my embrace, kissed her on the head and then looked back up, the woman rubbed her belly, we reconected eyes, and in that moment in time, she no longer felt alone. She knew that there are others that can understand her pain, she gave me a little bit of a smile and held her head a little higher.
After the doctors visit we went next door to the hospial to visit, we said our hellos to everyone, everyone so glad to see our Precious Lilybug. She was held and given kisses like always. We were told we missed our Dear friends Bela and Avery by just a couple hours (No doubt the doctor apt made the difference) We sat and talked with Nurse Kristie for most of the visit, she held Lily while she slept and we chatted. When she would get up to do something I would just take in the surroundings. Those of happiness, sadness, anger, and depression. I know the floor like the back of my hands, along with the staff, which we love like family. It was busy today, many discharges and 2 surgeries. I was there as one baby was being brought back, to our old room none the less, and I couldnt help but feel an overwhelmeing sense of sadness and anger. There was no more familes on the floor that I knew, all were new. To think how many babies come to that floor with CHD's just breaks my heart. To know how many parents will go through heartache and triumpants on this floor frusterates me. How many are most likely caught of guard is sickning. Even though that heart baby isn't your child, they effect you none the less, because you know it could be your child tomorrow.
I remember when Lily was there for her second surgery, the floor was defeated. A baby was lost, there was nothing more the doctors could do, his little heart had had enough and admitted defeat. He gave up his couragous fight and such a little fighter he was, then flew home to the arms of Jesus. It was awful, how could you not look at your child and feel blessed but think to yourself that could always be the fate of your child. No smiles were on the floor that day, just tears and sadness. We all felt the lose, ofcourse not as much as his mother and father and family, but we still all were moved deep to the core.
I have often said I would like to know the Lords plan for Lily, many have heard me say, I wish he would come and tell all to me so I would not tremble in fear as I do. That is she has a day reserved to be called home that I would like to know it because that would give me a dead line...lack of a better term...but I would know how long I have with my precious child. But then others ask, how you would handle that, knowing things like that....I dont think I would handle it well, but then again I have always been one that doesnt like surprises, I like to know ahead of time what I am getting myself into. But I am once again reminded how this is not in my hands, this is in our creators hands and will forever will be. I just have to have faith, trust and courage. One day at a time, not looking to tomorrow until today is over. Deep breaths, tons of kisses, and lots of love.