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May 19-25

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Adalind turned 4 months old yesterday! 😍 its too bad we are stuck in the hospital.

Even though she is a bit of a diva, she is breaking hearts here at childrens. I went to have breakfast this morning and came back and there was a volunteer playing with her.  Probably no more than 18 years old. Adalind was smiling and talking to her and i think the volunteer fell a little bit in love with her. Im pretty sure they are supposed to leave the room and try to find more work if the parent shows up but she hung out with us for another hour or so. Haha. She kept gushing about how cute she is. 

Now for the medical stuff. Adalind's oxygen levels kept dipping into the 40s and 50s so they decided to keep us at the hospital until her next surgery which they moved up to Wednesday. She is just old enough and big enough to handle the Glenn. There are two major problems though. The first is that her mitral valve is leaking horribly... the cardiologist said it really can't get any worse 😦 That needs to be fixed but it might be more stress than her 4 month old heart can handle to do both. They could wait with the valve repair and just do the Glenn but then we come to the other issue; which is that both of her pulmonary arteries are undersized. The glenn is were they take the superior vena cava and move it from the heart to one of those pulmonary arteries. Since it would be like attaching a huge tube to a tiny tube, that would increase the pressure in her heart and would be even harder on that mitral valve. 

The other option is to add another shunt to her pulmonary arteries (just like her 1st surgery) and allow her to grow for a few more months and hopefully, with the increased blood flow, those arteries would grow as well. The issues with that is then there is still the worry of that mitral valve regurgitation causing heart failure and that would also be 3 open heart surgeries before she is a year old. That is a lot of stress on an infants body and heart. 

I did ask if they could do the shunt and mitral valve repair at the same time and then do the Glenn later. Her surgeon said that theoretically they could however it has not been performed and they do not know the outcomes of such a surgery. There was one other issue with that but his explanation went over my head. Something about the 2 different sections of the heart being an issue. 

They are going to do a CT scan on Monday so they can get some 3D pictures of her heart, based on that they will decide how to proceed. Her surgeon also wanted the weekend to think it over.

So we are just waiting now. Adalind is doing much better. I really think she just wasn't feeling good from that heart catheter procedure. Today is the first day that she doesn't look swollen. Her nurse helped me give her a sponge bath and put her into her own clothes. It feels a bit less hospitality when she gets to wear her own clothes. Her nurse today is hilarious which makes the day a lot easier. She came in just a bit ago to check on her.  Adalind is napping peacefully and when the nurse said something like "she is sleeping so good", Adalind jerked in her sleep. The nurses face was this look of horror and then she instantly hit the floor and crawled out of the room without saying a word. Im still giggling about it. Needless to say Adalind has a reputation on the cardiac floor.  Everyone knows who she is. She is NOT a baby to wake up when she is napping. 🙄 she is going to run Ryan and I ragged i think. 

Picture note: the thing on her hand is just a sock covering her IV. Adalind was determind to rip it out so... now the sock. She's not pleased. Every once in awhile ill catch her scowling at it. 

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