Friday, November 14
I got discharged from University at about 10 am. When I got here (to Children's Hospital, right next door), Dave updated me on the events of Thursday night, which I mostly covered in the last blog post. Her nurse when she was admitted on Thursday was Erin, and her overnight nurse that night was Tammy. Dave said both were great.
Her nurse on Friday was Mary Ann, who Dave wasn't sure about at first, but I thought she was very good, she helped me get set up with pumping comfortably in our room, so that when Faith is ready to eat but not ready to start nursing yet, she will have plenty of milk. Her doctor that day was Dr. Tuttle, although I never met Dr. Tuttle, I did meet Dr. Potter, the pediatric surgeon. I don't think he ever goes home, he must just live at the hospital, because it seems like he is constantly here! He is very nice though, he always explains what he is doing, gives us an idea of what is coming, and calls Faith by name. I like the ones who call her by name.
On Friday they started Faith on a medicine called Dopamine; she was having some issues with her blood pressure being low, which are normal issues for a baby with her condition. They started her out at a dose of 5. She was also put on fentanyl to help with her pain and keep her sedated.
I gave her the doll I've had since I was born. It is a few inches shorter than she is, but very close in size to her!
She has a lot of tubes and wires connected; the leads on her chest are for monitors, they monitor her heart rate and respiratory rate (how many times she breathes in a minute). She has a little cuff on one foot that measures her oxygen saturation. She has (had) an arterial line that measures her blood pressure, it's sort of like an IV but it goes into an artery instead and measures the BP from the inside. She is intubated, which means there is a tube down her throat that helps her breathe. She also has a line that goes into her mouth and down to her stomach that suctions it out and keeps it empty. She has an IV where she gets her medicine. And she has a line called a Broviac, where she gets her nutrition.
Friday we went and ate lunch in the cafeteria downstairs, and there was a group of firefighters walking through and handing out fireman hats. These pictures are of the boys in their hats... the last one of Noah is after he learned about what happens when you pull the elastic that holds the hat on and then let go with it under your chin!Friday's overnight nurse was Jen. I wasn't too sure about her, she really didn't talk to us at all or tell us what she was doing.
Saturday, November 15
When we woke up Saturday morning, there was another bag hanging on her IV pole, a brown one. We found out that it was Faith's TPN, or total parenteral nutrition, which is the nutrition they give her through her Broviac line until she is able to eat. We also found out on Saturday morning that they had weaned her Dopamine dose down to 3.2 during the night, and her blood pressure was staying stable on the lower dose. Her nurse on Saturday was Katie.
Dr. Potter (the surgeon) came in around 6:30 AM and said that her silo could/should be reduced. He came back around 10:15 and did the reduction, bringing it down by about an inch. He was very impressed with her progress and said that was a really good reduction.To explain the silo/reduction thing a little bit- the silo is the bag they put on over her intestines to keep them moist until they can get them back into her abdomen. Each day, they come in and squeeze a little more intestine into her, and then they tie the bag off right above the intestine, until finally all of the intestine has been put inside her body and they can close her up. She has been doing great though, because hers is going in a lot on its own through the day, just by gravity. I asked how the silo was attached to her, but no one I asked knew the answer, they told me I'd have to ask the surgeon.
Faith's overnight nurse was Jen again. She was a little better tonight.
Sunday, November 16
Faith's nurse today is Gretchen.
My dad came and sat with Faith while my mom, Dave, the boys, and I went to church. We've been going to a church called Calvary Chapel while we're down here, and we like it very much. It seems to be a slightly more conservative version of our own church at home, with very nice people. We went and introduced ourselves to the pastor one Sunday after church, and told him our situation and why we are down here, and literally the first words out of his mouth were "What can we do to help?" A couple of ladies from the mom's group at the church came over one night and visited with my mom and I at the camper; they brought us a beautiful crochet blanket for Faith and then when I went in for my amnio, one of them came and sat with the boys in the waiting room for FOUR hours. They are going to start bringing us meals on Wednesday. They have been so amazingly nice and helpful, it is amazing that people from a church we aren't even members of would be so caring and thoughtful, and we will be grateful to them forever. Yet another way God has kept us in his hands through all of this.
When we got back from church, we found out that they had weaned Faith's Dopamine down to 2. We also found out that her sodium levels were low, probably because of the drainage she has around the silo. They put her on some IV fluids to replenish and raise those levels. They also told us that her blood is acidodic (not sure if that's how you spell that...), which means it's more acidic than it's supposed to be. They gave her some bicarb (antacid) to help neutralize it, and increased the amount of oxygen she was getting from the venthilator, because sometimes that can help. They didn't really tell us why it was like that, though... While we were gone, Dr. Partrick, the head surgeon, came in and did another reduction, about 1/2 inch this time.
Later in the day, they turned off her Dopamine. Dr. Partrick came back in and checked on her silo; he said they could almost reduce again, but that they would probably wait until morning.
Faith's overnight nurse was Jared, and he was training another nurse named Megan, so she had 2 nurses Sunday night. Dave had to leave Sunday night so he could go back to work on Monday morning. Jared was a great nurse, he told me everything they did and WHY they did it. He explained the acidic blood, he said that what it means is that the pH level of her blood is lower than it's supposed to be, which is normal because of the irritation and inflammation from putting her intestines inside of her. He also was able to get her arterial line working better, since it was so positional and having a really hard time reading accurately.
He also explained how the silo is attached to her. He said it is basically a plastic bag, and it has a plastic ring in the open end, so when the surgeons put it on, they put it over her intestines, then squeezed this ring and put it into the opening in her skin, where it popped back open and is then held in place just by tension. So it isn't actually attached at all, and if someone were to pull on it too hard, it would actually come off. He also explained what the skin is like where the hole is around the intestines- it is healed, so the edges aren't raw or anything, they are healed just like normal skin. I can't really think of anything to use as an example of what it's like... but it's pretty amazing how it works.
Overnight they had to put her back on Dopamine, at a dose of 5 again.
The boys are handling all of this as well as they can, being 2 years old...
Monday, November 17
Monday's nurse was Liz. I didn't like Liz at all. She seemed like she really wasn't "with it", and I almost felt like I knew more about Faith's condition than she did.
Dr. Potter came in around 10 and did another reduction, about another inch. He said she is doing great in that area, but that her adrenal glands aren't working quite right, which is normal when the body is stressed like hers is. He said the adrenals are the ones in charge of the blood's pH and sodium levels, and that's why those levels are off. He said the issues should resolve themselves after her surgery, and they are "normal" for her condition. Dr. Potter is really great, he always explains things, and he even calls her by her name to the other doctors.
During the day on Monday, they had to increase her Dopamine to 6, and her arterial line stopped working, so they took it out. They also moved her IV to her foot, so Faith finally has two little arms free!We have a TV with a VCR and DVD player in our room, so the boys can hang out in here with us and watch movies.
Faith's overnight nurse was Jennifer, who was a step up from Liz, but still not spectacular. I guess after having a great nurse like Jared, the other "normal" nurses don't seem as good... Jennifer said Faith's temperature was a little high, so she turned the warmer off to make sure it went down and she didn't have a fever. It went down just fine, and Faith got to sleep covered with blankets for the first time. I asked Jennifer if they would be putting in a new arterial line, and she said the surgeon told her they would probably put a new one in when they did the surgery. The nurses don't put in the arterial lines, I guess that's something just the surgeons do, from what I can tell (because hers stopped working on Friday too, and Dr. Potter came and put in a new one).
Tuesday, November 18
Today's nurse is Erin, the same nurse that was here when Faith was admitted. She has been really good, very nice and has done a great job keeping me informed.
Dr. Potter came in around 8:15 today and did another reduction. He said it was probably the last reduction they'd do before Faith's surgery! I actually got to help a little with the reduction, because the nurse was busy- he had me hold the bag where it was squeezed, while he tied it off. It was kind of neat, in a really weird way... I guess I don't know anyone else who could ever say that they've done that.
Faith was able to come off of the Dopamine again today, but Erin has had to give her some morphine a couple of times because it seems like she is in a little more pain today than she's been. It is totally normal that she would be though, because for the first time ever, almost all of her intestines are inside of her body! That puts more pressure on the other things in there, which makes it hurt more. I think of it as being sort of like how I felt as Faith grew and put pressure on my other insides.
Dr. Partrick came in while I was in one of the lactation rooms pumping, my mom and the boys were in the room with Faith. He told my mom that they will be doing the surgery at around 1:00 tomorrow, give or take an hour. It is so exciting to think that at this time tomorrow, she will be all closed up and have all of her intestines inside of her body for the first time ever!
Today they said that Faith has a heart murmur. Someone from cardiology came and did an echocardiogram. They have to make sure that she doesn't have anything wrong with her heart, just in case, so they can make sure that everyone who might need to be at the surgery tomorrow is there.
Around 1:00 today, after lunch with my mom and the boys, I got to help Erin do Faith's "cares" for the first time. "Cares" is what they call it when they come and change her diaper and the gauze around her silo, take her temperature, and check all of her lines. As I was changing her diaper, Erin said she had changed a poopy one earlier today, which is AWESOME news! Since they have her stomach being suctioned out, and her intestines are stressed from being put into her body, they don't really expect her to pass any stool. But the fact that she was able to means that there aren't any blockages in her intestines, which means that hopefully all that needs to happen after she is closed up is for her to learn to eat! Suddenly it seems more likely that we might make it home for Christmas...
The surgeon came in around 6 to have me sign the consent for the surgery tomorrow. Dave is on his way down now, so he can be here tomorrow for the surgery.
Our night nurse tonight is Jennifer again. Hopefully we will find out the results of her echocardiogram soon, although I am sure it was nothing serious, since we've been waiting so long for the report. They also did an echo on her before she was born (about 10 weeks ago), and the cardiologist who did that one said that everything was fine with her heart, so I am counting on the fact that nothing has changed since then.
I can't wait to post tomorrow after her surgery, with pictures of our beautiful little girl with all of her organs on the INSIDE!! :)