Awake and playing

She may not be able to see but she can still play!

Modest progress

Leah is taking a bottle from David now, which is a good sign since she hasn't had much to eat since the surgery. At this point, she has had about 5 ounces of breastmilk, which is quite a bit. There's a high possibility that she is going to projectile vomit most of it back at us, but since there's a small chance she will keep most of it down, we are proceeding. Mostly, it's a good sign that she is able to get some liquids besides what is going in through the IV. The nurses have scaled back the amount going into the IV as a result, but if she changes course overnight and stops taking bottles, they will switch it back to its original amount. 

At this point, her eyes are completely swollen shut, but she doesn't seem to be too bothered by it since she's still only semi-conscious. We can see her eyes moving behind the lids a bit when she starts to get fussy, so it must be confusing to her not to be able to see. The nurses who have worked with "cranio" babies in the past say that they will start to tip their heads back because it allows them to see out of the inside corners of their eyes once the swelling starts to recede even a little bit. She said we should expect to see that tomorrow or Thursday.

Dr. Taylor was in to see Leah this morning, and said everything looked great. It's strange for someone to look at her in this state and say that she looks perfect, of course, but since he's the expert, we are going to trust him! We have also had an amazing nurse today, Peggy, who has really been great about getting me some extra help and information about how to nurse Leah with all those IV lines and monitor wires coming out of every limb. She has also been really great about advocating for us. This morning when a host of doctors and med students came by to do "rounds" outside the door, she grabbed me and took me out there too, introducing me to the doctors as "Mom" and then nodded her head so they would proceed with rounds. They seemed a little surprised, but went on and launched into a whole laundry list of points to discuss about Leah's case. I didn't understand all of it since some of it is in medicalese (the point of which I still don't understand--if edema means swelling, why not just say swelling?...), but overall it was really informative. This is a teaching hospital, so the attending was asking questions of the group like, "Given her increased sodium and potassium levels, what might be a natural concern?" and using words like "extradural exposure" which made about 75% sense to me. But it did help me to see how the doctors negotiate, and agree upon, a plan of action for Leah for the day, and now I can be watching for things on that plan to make sure they are carried out. It has made this day much easier for me in the end.

I have also learned that, with the constant changing of the nurse and doctor shifts in the hospital, I can stay on top of information by always answering the question, "Did they explain to you..." with a "no." Even if the last doctor or nurse did tell me in great detail what was going to happen when, for what reason, it's highly likely that the doctor or nurse coming on will either have a different understanding of that who-what-when, or will add some information that will be helpful for me to know in the end. It does sometimes make me forget which person told me which bit of information, but it's a worthwhile tradeoff.

Still swelling

They weren't kidding when they said her eyes would swell...

Swelling

Leah's swelling is getting worse as the morning goes on. For some reason the left side is worse than the right, which is the side where the distractor was placed and more of the tissue, skull and dura was exposed. The nurses guess it's because we have her head turned to the side and the fluid is draining to the left. Her heart rate is also up but that's most likely from the pain, so they have given her more morphine in the hopes that will slow it down.

When I was nursing her she passed some gas, but it didn't smell like a dirty diaper. I figured there was no way she was dirty so soon after surgery, but I stuck my finger in the side of her diaper just to check. What a rookie mistake...!

Overnight

We made it through her first night after surgery, and she continued to sleep well. She woke up about every two hours and cried a bit, but it seems like she is crying from discomfort more than real pain. They stopped giving her morphine yesterday evening, but plan to give her another dose this morning after the surgeons are in to see her.

I was also able to nurse her early this morning, and while she didn't take a lot, the little she did take made me very happy, since it has been over 24 hours since she had any milk at all. She is getting IV fluids, but her mouth looks really dry when she cries, and combined with her very hoarse and raw-sounding voice from the breathing tube, she seemed to be in rough shape. Now we just have to watch that she doesn't throw up, which is pretty common after anesthesia.

Our room is full of all kinds of high tech pieces of equipment, but my favorite is a big flatscreen over the nurses' desk that shows all of her numbers at the same time...her pulse and blood oxygen, but also all kinds of lab results which are constantly being updated. She has a central line in her neck, so I suppose that something to which she is hooked is taking readings of her blood. That means she doesn't have to be stuck with a needle anytime they need information, which is a relief. On the other hand, about half of the numbers are written in red, meaning they are outside the normal range. When I asked about this, they reassure me that they aren't worried at all since she just went through major surgery and it is going to be a while before her body adjusts. Still, I am hoping that by getting some milk in her, the numbers will go back to white today.

We are still in the intensive care unit of the hospital (where there is absolutely no difference between night and day, I noticed) but I am hoping that when the surgeons come to see her this morning they decide she is stable enough to be moved to a regular room. Today we are also going to be watching her swelling, which has gotten much worse overnight. Unfortunately there is nothing they can do about it other than to give it time and keep her comfortable.

All is still well

Leah is still getting morphine so she is still very quiet and relaxed. She is sleeping a lot, but when she is awake her eyes are open and looking around. She even managed a weak smile for one of the nurses. They remove her catheter, and having even one fewer line running into her tiny body makes us feel better.

Leah noticed the IV line going into her arm, which is held on by a stiff board, and she isn't thrilled with it. I know that when she feels well enough to grab her toes and finds another board and IV there, she's going to be really upset. Without being able to suck on her toes, I don't know what she will do.

For now, we are just standing by her crib, talking and singing to her when she opens her eyes, and holding her hand when he eyes are closed. We know the swelling in her head and around her eyes will get worse, and once the morphine wars off she will start to feel much more uncomfortable, but for now, we are happy that she is calm and stable. More than anything, we are very thankful that the day has gone as well as it did.

Awake

Leah is slowly coming out of anesthesia. She is alternating between crying, and laying very still and looking around with a bit of a dazed look. She took her "bobby" for the first time, which seems to be a good sign. And we are playing some of her favorite songs on David's phone, which is keeping her calm. The nurses are still administering morphine to control her pain, but because she is awake but not inconsolable, we feel like she is handling this better than we had anticipated. She still seems very sleepy, though, so as that wears off, her response may change. So far, though, so good.