Back to the OR

Our sweet baby goes back under the scalpel today-within hours actually. Her surgery is listed as a hematoma evacuation. The tests found a large mass collapsing her right middle lung lobe and another smaller one collapsing the left lower. This mass is why she hasn't been able to come off the ventilator. She has had multiple echocardiograms, ultrasounds and an MRI to try and figure out just what the mass is comprised of. She was unable to go to FornamCT scan due to the damage the dye would inflict upon her kidneys. Without the CT our worst fears cannot be ruled out. The mass may be a very large aneurysm. The surgeon believes it's most likely a hematoma but there's no way to know for sure. The plan is to prep her for the aneurysm repair just in case. That means they will locate and prep the large vessels in her neck in case she needs to go on heart lung bypass. There are too many if's associated with an aneurysm that size. If it is an aneurysm she'll bleed. A lot. The surgeon may not be able to control the bleeding. She'll likely end up on ECMO again. She'll lose her kidneys, they are just still too sick to recover from another bypass run. She'll have to get so many blood products and fluids. She'll need more intensive dialysis than she's currently on to get that fluid off. Meaning I am sure hemodialysis will be on the table. So so many if's, each more terrifying and devastating than the last.

If it's a hematoma the surgery should be shorter and less complex than any she has had previously. She'll still puff up and be sicker through this week, but we hope with better pulmonary expansion and venous return she'll recovery more quickly. 

I am beside myself as any other mother would be. Waiting to hand off your helpless child to an awaiting surgeon never gets easier. It's feeling no parent should feel and yet we've grown accustomed to it. This will be the fourth time in the operating room. And that doesn't include the heart caths or the in room operations. 

Sean and I haven't been able to talk about her going back much. It's just too hard. It's too hard to think of her freshly healed chest mangled again. It's too hard to think of her struggling through withdrawals again. It's too hard to think of her too puffy to open her eyes. It's all just too hard. And yet it's what Avelyn must endure to live. I pray we've made the right decisions for her future and well being. I pray she has a future. I pray for independent breathing and pee pee. I pray for negative fluid balances and avoiding infections. I pray she improves and we can get to know her better. 

Until then I'll continue to etch each facial expression and detail of my itty bitty baby into my very being, because everything thing about her is precious.