Some Dang Cute Visitors

I think that the hardest thing as a mother is to sit and feel like there is nothing you can do to help your child. That is how these last couple of days have felt. I would gladly take her place if it were possible. Ada today has recieved a blood transfusion for a low hematocrit. They put in another picc line to be able to give her TPN. Now they will be able to pull out her internal jugular central line or iv. She has been uncomfortable since her surgery on Monday. She doesn't want to be held. When she fusses all I can do is give her a binki and sing to her. She's still draining fluid out of her chest tube. As soon as that slows then we can start to feed her again. I don't know when we can get her home yet. I just hope that it will be soon. She is such a sweetheart. Thanks to neighbors and friends and family who have supported us through all of this. We have felt the prayers in our behalf.

Out of the PICU

Ada has just been transferred out the the PICU. She looks good today. She is uncomfortable but rests well when we medicate her. As far as the surgery goes we won't know if the surgeon was successful or not about finding the leak for a couple of days. He just went in and started clipping any lymphatic vessels around the heart. Unfortunately, children with Down Syndrome generally have a large amount of lymphatic vessels, so this could pose a problem. He clipped and glued his way around her chest cavity. Hopefully it worked. So now its a wait and see game. It's hard to be patient, but every blessing that Andy and I have received we are told to be patient. That is not an attribute that I have, but apparently will have to learn.

Bad News

The doctors have decided to take Ada back to surgery to clamp the vessels that are leaking. She is not improving like they wanted. Her last echo didn't look good and they have been pulling off a lot of fluid. She will be going back to surgery tomorrow at 12:00pm. I am nervous, but hopeful that this will make her feel better and fix the problem. I love her so much and can't bear the thought of another surgery, but apparently its needed. I just want to take the time to thank my sweet husband. He has been a trooper through all of this. I am so greatful that he is worthy to hold the priesthood. That power has been used in our home often lately. He is amazing and my comfort. I know that together we can accomplish anything. Good luck Ada, We love you!!!

Dinner Time!!

We have been able to start feeding Ada again today. She is eating with a frenzy. I think we were starving her! They have weaned down the tpn. She seems to be tolerating her feedings well. She has been running a fever today. More blood culutres were drawn to see if any bacteria will grow. Hopefully nothing will. We were unable to withdraw any fluid from around her heart today and that is a good sign. Now if it will only stay that way. We may be on the turn around. I just wish that she would sleep!! I am sick of being in the hospital and hopefully we can have her home soon.

Clamped

Ada has had her chest tube clamped now for almost 24 hours. She went for an echo and it still showed some fluid around the heart. But the doctors didn't seem too concerned and I think for now they are going to leave it clamped and possibly try to feed her tomorrow then recheck the heart with some more imaging .She has had a low grade fever today and has not slept hardly at all. Hopefully tomorrow will bring some good news.

Blue vs. Pink

Okay so we are still here at the hospital. They have just started her on TPN (total parenteral nutrition) that is how we are feeding her. She can no longer eat by mouth. But I will say that she has been pretty good about it. We found that she will take a binki where she didn't before. But I will say this, if you were a girl baby would you prefer a pink binki or a nasty blue one? We replaced the blue one with a pretty pink one. So with that taken care of we can now place a picc line today. They are going to do it under fluoroscopy because she has horrible veins. That way they can place a dye in the iv she already has and see where to put the picc line. As you can see from the picture she is still putting out a ton of fluid from around her heart. Yuck!! Hopefully being NPO (nothing by mouth) will help slow the process. If not then the next step is surgery to clamp the vessels that are leaking.

Back in the Hospital

We are back in the hospital with Ada. At her follow up checkup for her heart surgery they found that she had fluid around her heart. So they decided to take her to the cath lab to tap the fluid off. When they did this the color of the fluid looked like milk. That is not good. She is leaking lymphatic fluid around her heart. It is called chylothorax. One of her lymphatic vessels was nicked during the surgery, or so they think. The drain is still in place and we are manually pulling the fluid off every two hours. It is finally starting to slow up. We checked an echo this morning to see how things are looking. If things slow down more then they will clamp the drain and recheck another echo to make sure no more fluid is accumulating. So an overnight stay is turning out to be a weekend stay. (I hope not longer!) If things don't slow up then the only other option is to go back to surgery. We are trying to be optimistic. The doctors and nurses here are wonderful and provide great care. For that I am greatful. I am just missing my other children. But I know that they are in great hands! Thanks to grandparents, family, and friends!!