The last 2 weeks!

So now that I have time to reflect on the last 2 weeks....I just ran into a wall, came to a crashing halt and had a little bit of a break down. I have to say the start of this year has been hell and I pray to the good Lord that it will get better. One open heart surgery was enough but 2...and barely a month apart. it has been just a whirlwind and I have lost my calm cool collective-ness a few time. I thought we would have a few months, or at least a few weeks. The next thing I knew my precious baby girl was no longer in my arms, her eyes were no longer searching for mine, her cry no longer reached my ears. I heard monitors alarming, and doctors telling me how sick she was. How did that happen? When did it happen? and how did we not catch it quicker? But wait quicker...we were only home 2 1/2 weeks....I don't know which is worse, her original diagnoses or what we have on our plate now.

She was originally a HLHS/DORV baby with the VSD,Co Arc,and Dextrocardia.....well that was bad yes...but we lost the HLHS/DORV, now we have Aortic Stenosis/Left Ventricular Outflow Track Obstruction......with the HLHS we were looking at 3 surgeries...3.....now we are looking at surgeries for the rest of her life. And here is the catch, they are cutting the tissue away, which will inevitably grow back. There is no way to stop it, there is no way to make it not grow back. When will it happen? we don't know...her heart is like a ticking time bomb.

How do you explain that to a child...how do you tell them that there is no way to tell when the next surgery is...and we just have to pray and keep our fingers crossed that we will catch it in time before it gets to bad.....I don't want to say what type of a life is that because at least it is life. But I want to scream how unfair all of this is. How can others not know about any of this? How can doctors not post anything in offices about this. Granted there is no way to know for sure until the baby is born...but still, parents should be aware. I have been on both sides of the coin, I have known ahead of time and then I have been smacked in the face with all of it....I would take the knowing ahead of time.....I can at least get my barrings, I can cry it out...collect myself and get the information I need together and then walk into things with my head on straight....not knowing was sickening....The information was overwhelming, you try to process what the doctors are saying over your grief and you just cant retain the information because it goes into your head and jumbles about and before you get a chance to pull yourself together long enough to write it down, you are overcome by emotions again.....you just are so overwhelmed.

Then the surgeon comes out....after 9 hours of waiting....and he looks at you...with a defeated look in his eyes and says the word...the next 24-48 hours are crucial...IF...she makes it through....your heart drops, you grab the wall for support and all he can say is he is sorry for the bad news but it was a lot worse then any of them thought it was. You put on a brave face....you gather your courage to tell the rest of the family while remaining strong...and then they tell you, you can see your precious child now. Bracing for the worst, you walk into the room and the child your remembered seeing 10 hours before that doesn't resemble the child laying in the bed before you with their chest open and tubes and wires hanging from everywhere. you hear the nurses says that your child has become the sickest baby on the floor and your heart drops even further...doesn't anyone have hope besides you? Doesn't anyone have faith besides the parents? Medical technology only goes so far....the rest is in Gods hands and the patients.

Finally night came and I sat down...I thought I will close my eyes for a few moments......a few moments ended up being 9 hours.....which I was glad I got because according to her nurse she was touch and go all night. Our favorite nurse went home that morning but got no rest because she was so worried about Lily. She came in and rushed over to the her day nurse and asked how she was...and called throughout the day.....I sat next to Lily the whole day....just sat and prayed....as much as I have always known this has always been in the Lords hands you cant help but plead with God and beg him not to take your precious child who's finger you are holding. Tears where my constant companion, I sang, I rocked....and prayed....48 hours later the doctors couldn't believe the improvements she made. The surgeon said he couldn't believe how well her heart was....it was still going to be a long road but we were over the hump for right now.

A couple days later she was trying to breath over the breathing maching....lol...stubborn child...she was saying....you cant keep me down!" Her arms started to flail around....time for the restraints....oh how quickly her temper came back...they had to keep her constantly sedeated...lol...finally the day comes to close her chest.....all was going well....then her right lung collapsed...we got fluid in the lung....they had to place a new drainage tube on that side....fluid began to build up behind the heart....they started to rotate her from side to side to get it to drain....the surgeon comes and tells me they are going to remove the tubes in her heart but there are risks involved...he said if he pulls them and the bleeding doesn't stop they will have to go back in, crack the chest, put her back on bypass to close the holes....well...Lily wouldn't have made it at that time through another bypass....she barely came off of it as it was......so once again...you begin to pray....you shed tears of fear and frustration......Dr.Cleveland(surgeon) comes and tells me she came through with flying colors...you breath a sigh of relief....but then a couple days later she develops a cold...so much congestion...you watch the O2 saturation's and your heart drops as you watch it go lower....the oxygen gets turned back up...suctioning becomes an hourly process....she screams...your heart breaks...and you turn your face upward and ask silently when this is going to get better.....take a deep breath...whisper words of comfort in her ear for both you and her....start to sing to stop from crying....she calms and so do you....you made it through another day.....The day comes to start food again...you are so excited to nurse....she loved it so much....but wait...she isn't suckling like she once was....she starts to throw up...her o2 Sat's drop again....she cries and so do you....the one comfort she had is now gone....bottles are a no go....back to strictly NG feeds....but wait...60mls an hour starts to be to much....so we push back to 60mls over an hour and a half....but she is still throwing up....so we decide to change formula seeing mommy no longer has enough breast milk for every feeding....no such luck...even the pregistamil is still to much...so now she is on a continuos feed of 20ml an hour.....but you know she is hungry, she sucks the paci with a vengeance but it you offer the bottle she rejects it....damned if you do and damned if you don't.....you mutter a few curse words under your breath...why does she have to be as stubborn and her mother...

The doctors get your hopes up and say you will be going home this weekend...but then come in and let you know it will most likely be the middle of this next week closer to next weekend.....we are still going through with drawls, and not tolerating feeds...why would mommy think that her precious little girl is coming home already......why would mommy want to get back to a regular routine....Its not like it hurts when Lucas and Austin scream and beg for mommy to stay and play....to cuddle with them, to read them another story....its not like it doesn't hurt when Austin says he doesn't like baby and trys to push her away while mommy holds her......How do you explain that in time they will understand...how do you make yourself feel better as you walk away from the rest of the family to be with the one that needs you most right now....the constant guilt is almost to much. You wonder to yourself when you are just going to fall down from all the stress and guilt you have from all of this....but you never do fall...no matter how lost you are...no matter how much is on your plate of life...you make it through....why....because God spared an angel....and that angel is the little baby laying back in the bed at the hospital.....The Lord whispers to me to trust him, and to remember that he will guide us, ALL of us, in our time of need.....to trust...and have faith.....so all left that I can do...is pray...trust, and have faith......that's all left to do......!