Well, it was Thursday when I started this post! :) I was a little too incoherent last night to get it finished, so we'll try this morning after I've had some sleep.
Yesterday was a fairly eventful day for Miss Bekah. The most exciting thing for Mommy and Daddy is that she had about 15 minutes yesterday afternoon of being awake and alert. It is the first time we have really seen her eyes open at all (except for Drew being able to see her awake right after delivery). Because she is a newborn (and they sleep a lot anyway!) and because of some of her medications and her heart/lung problems, she tends to sleep all day. Yesterday she spent almost all of her awake time staring at her daddy. He didn't mind! :)
Rebekah watching Daddy
Yesterday was line-change day, which meant that all of the lines and tubing for Rebekah's IVs had to be changed. What a huge job!! There are lines and tubes running everywhere. I'm glad it was Ashley (Rebekah's nurse yesterday) and not me trying to figure it all out! Ashley had to lift Rebekah to get some of the bedding changed under her and we took the opportunity to get a picture of Rebekah and Daddy.
Rebekah and Daddy
The doctors met yesterday afternoon to discuss Rebekah's surgery, and we think we have a surgery date on Tuesday. Rebekah would be the first case of the day, which would put her surgery time around 8:00 in the morning. We realize that this is a tentative time since an emergency case or delay could bump her time or day, but at least it's a goal to work towards.
Rebekah almost asleep again, but she was trying hard to keep her eyes open.
The doctors have given us a lot of information and different scenarios, and we have been trying to assimilate all of it. Because Rebekah only has one functioning lung, the doctors are trying to be extra cautious in how they proceed so her lung is not overloaded. There was talk of splitting her initial surgery into two parts (the first to create a pulmonary artery and a few months later closing the hole in her heart). I think they have gone back to planning on just one surgery to do both procedures at the same time, which we feel is for the best. It will keep her from having two different open heart surgeries just a few months apart.
Rebekah loves to hold her Daddy's finger.
Socks!! They look really cute on her.
It looks like Rebekah is wired up to a bunch of stuff, but it is really more simple than it looks. There is a line coming out of her left sock that is her pulse oximeter. Basically, that just measures how well her blood flow is getting to her lower extremities. It just velcroes around her foot. The blue splint on her left arm is to support her hand and keep it from moving around because she has an arterial line (an IV in the artery) in her wrist. Most of the tubes and wires laying on the bed all connect and run into that arterial line. There is some tape on her belly around her belly button, and that is holding down a central line (another IV) that the doctors were able to get in through her umbilical stump right after birth. And then she has two tubes in her mouth. One is obviously the ventilator helping her to breathe. The other is an ng tube (nasal gastric tube) which runs to her stomach to help suction out any fluid that builds up as a result of the ventilator.
Mommy got to change Rebekah's diaper (with Ashley's help)!!
We had hoped that Rebekah might be able to have the ventilator removed, but the doctors are still being very cautious. As Dr. Forbus said, he doesn't want her to burn him again! Because they took her off a little early the first time, they are trying to avoid taking her off too early again and having to reintubate. So, they watched Rebekah through the day yesterday and the plan was to watch her through the night. There is a slight possibility that she may be extubated this morning, but it is likely that she will just remain on the vent until her surgery.
Why, you ask? Well, after looking at all of the scans and tests that were done in the last couple of days, the surgeons have decided to perform one more test on Monday - a heart catherization. Basically they will run a small catheter through her groin and into her heart in a final attempt to find something that they can work with to provide some function in Rebekah's right lung. There are several (4 or 5) small veins or collaterals in different locations that supply blood to the lung tissue, and the hope is that one of those might be a small (and we mean very small!) artery that could be used to supply blood flow to the lung if it was connected in the right location. If there is any chance to save even a little function for that lung, the doctors are willing to try it. Initially, if there is something there that the surgeons can work with, she still may only have 5% use of the lung, but it is better than nothing! And the doctors feel fairly confident that the artery would grow some with Rebekah and with continued use and blood flow. Rebekah will never have the normal balance of lung use like we all have, but it would be nice (and avoid a lot of potential complications) if she had some function in that lung.
So, all of that said, Rebekah will have to be on the ventilator during the catherization, so the doctors would rather leave her on the vent through the weekend rather than take it out and put it back in so quickly. Basically, if she doesn't have it removed this morning, it will stay in until she is completely through her surgery and no longer needs it at all.
All tired out from her diaper change and playing with Daddy!
On a very fun note, we met another family from
Greenville yesterday. Their little boy,
Josiah has been in the
PCICU for six weeks, but seems to be doing much better in the last couple of days. We both knew of each other and that we would most likely be in Charleston at the same time, but it was fun to connect and actually put faces with names! Feel free to hop on over to their blog and check out their little cutie!! :) You can click on his name, or click the link on the left side of the page under Heart Buddies.
That's all for now, I think! We're heading over to spend the day with the little sweetheart!
