Guess What!!! Hailey has pulmonary arteries!!

Well,  a lot has happened since I last posted.  First, Hailey had another swallow study. Usually they have a person from Occupational Therapy hold the bottle for the swallow study so that the speech pathologist and the radiologist can look at the x-ray screen, but the person had some other appointments, so they asked if I would be willing to work the bottle for the study.  I was actually totally fine with that. So, I suited up in a lead shield and held Hailey on the x-ray table for the study.  They took a couple of bottles with different thicknesses of liquid barium and I fed them to Hailey slowly during the study.  It went a lot better than the first one we had done. No milk came out her nose and she seemed to know just what to do.  But, the x-ray showed that there was a narrow spot in her esophagus where the milk/barium in this case tends to bottleneck, gets backed up and heads up to her lungs.  The speech pathologist was really surprised because I think that she had felt Hailey was really ready to start with some bottlefeeding.  She said that everything we had been able to work on was really good, but this was something that they would have to figure out because it still isn't safe to bottle feed her at all.  I was pretty disappointed because I was sure that meant a G-tube, which means another surgery to face, although not nearly as serious as a heart surgery.  The pediatrician got the report from the swallow study and suggested that we go back to Primary Children's to meet with a GI specialist and an ENT (Ear Nose Throat) specialist.  We were already going down Sept 3rd for a CT scan, so I asked if we could do it in the same trip. They ended up setting those two appointments for Sept 2nd. 

The next week, we met with the pediatric cardiologist for the 2nd time.  She determined that Hailey does have congestive heart failure and noted that the retracting had gotten a lot worse since she had seen her last.  She said that a lot of Hailey's congestion was likely due to the congestive heart failure.  Congestive heart failure sounds really scary and it could be if it were left untreated, but it is different than congestive heart failure in adults. In an adult congestive heart failure means that the muscle is failing and causing fluid buildup, but in a heart baby, the fluid is building up due to the existing heart condition and a change in pressures in the lungs.  So, now Hailey is on a couple of diuretics to get rid of the excess fluid to fix that.  She did seem to get noticably better about 3 days after we started those, but it does make for some very full diapers :-) They had me take Hailey to get one more chest x-ray after the cardiologist met with us just to make sure there wasn't any other reason for the fluid in her lungs. That came back looking good.

This week we went down to Utah for Hailey's appointments. The GI specialist gave us some ideas to help Hailey maintain an interest in oral feeding since she is not really able to bottle feed at this point. That is really important because if babies lose that interest it can be really difficult for them to learn to eat later in life. They often will end up with food aversions and it is really hard to get them off the tubes if they do that. So, they suggested giving Hailey some little tastes of ice cream, jam, yogurt, etc on the end of her binkie to try to keep that interest going. They are also going to have us put a little bit of formula in the binkies they make to give babies medication with and have her try just that little bit. They aren't planning on doing a G-tube at the moment, but we will see.  That appointment took about an hour. Then, we took a little lunch break and then headed for the next appointment with the ENT.  He looked in her throat to verify that she has a uvula (the little hanging ball in the back of your throat). He found one, which means her palate doesn't have any holes in it.  Then, they did a scope of her throat. I held her while they put a little camera up her nose. It was about the same size as the NG tube we are putting in all the time, so that wasn't too traumatic.  They said everything looks anatomically normal, but her esophagus is really swollen, maybe due to the NG tube, maybe due to the reflux. 

The next day, we got a CT scan.  We had to turn off Hailey's formula at midnight and give her pedialyte until 5am. Then we had to turn everything off and be at the hospital by 6:30am.  I could tell she was getting hungry by the time we checked in and got her dressed in a little surgical gown (she had to wear that because she was being put under anesthesia for the CT scan).  We got her weighed and measured (for the 3rd time actually because she had to do it for each doctor's appointment) and dressed and then they sent us to a waiting room with a bunch of other kids waiting to have surgery.  They came and got a bunch of info from me and then I just waited. Our actual appoinment wasn't until 8am.  Finally an anestheisiologist came out and I was relieved because by now Hailey was protesting pretty loudly about being hungry. He came out and explained that he wasn't going to take Hailey's case because whoever scheduled the CT scan, which I actually not sure who scheduled it to be honest, didn't ask for a cardiology anesthesiologist, which is what she needs due to her heart condition.  He said that he could do it, but if he were Hailey's parent, he would want someone from cardiology. I agreed. He told me that the next available anesthesiologist from cardiology would be available in a minimum of 2 hours because they were all on other cases.  So, we decided to wait.  I hadn't eaten breakfast and my phone was just about dead, so I texted Ben to let him know not to rush down there with the girls because it was going to be a while.  He had been taking care of them at the Ronald McDonald house.  The nurses felt bad for me and curtained off a little area in the waiting room for me. They got me some snacks and juice, a chair that rocked so I could rock Hailey, a pillow for my arm to hold her up more comfortably, and a remote to one of the waiting room TVs.  They even chased down a charger for my phone and plugged it in to one of their computers.  I came out to the desk at some point to text Ben again and one of the doctors saw me trying to text on my phone. He asked if I was trying to charge it. I said yes. He said, "That will take forever plugged in on the computer, just a second." He came back with his own personal phone charger and let me plug it into the wall inside the little curtained off area. The nurses held Hailey for me when I had to use the bathroom and just kept asking if there was anything they could do. It wasn't their department's fault that things turned out the way they did, but they sure made the best of it. I was so impressed.  At about 11:40, the cardiology anesthesiologist came up and talked to me.  He is Dr. Evans, the same anesthesiologist that took Hailey's case for her cath surgery just after she was born.  He told me he was going to send someone in to do an IV and we would be on our way. Luckily, Hailey ended up sleeping for almost the entire time we had to wait. They did have me give her 10mL of pediatlyte through a syringe in her NG tube but that was it. I was amazed at how well she handled it.  The nurses came in to do Hailey's IV and I was really nervous because I have always had a hard time seeing my kids get their immunizations.  But, I did well with it this time and Hailey handled it like a champ, although she obviously cried.

They wheeled a bed with all of Hailey's stuff on it down to the CT scan imaging room.  I carried Hailey and helped calm her while they gave her the sedation medication in her IV.  She was out almost instantly.  I snapped a couple quick pictures and then they sent me to the waiting room.  I waited for about 15 min while they did the CT scan and then they called me out. I went with them while they wheeled Hailey to a recovery room. She started waking up while they were wheeling her down, but they still had me go wait in the surgery waiting room for a few mintues while they got her all settled.  I came in and held her for about 1/2 an hour, while her oxygen saturations went up and down. She was in the low 60s for a while, which is low, even for her. But, they put her on a small amount of oxygen and I just kept putting it in front of her nose when it went down and taking it off when she got high enough to let her try on her own again. Her saturations finally stabilized at about 77%, which is still kind of low for her, but okay. They wheeled her into another recovery room where there were a whole bunch of day surgery kids getting discharge instructions and recovering before going home.  I finally got her dressed again and we went to find Ben and the kids, who had been hanging out at the hospital all day.  It was about 2:30 by then. We went back to the Ronald McDonald house and cleaned out our room (they have you clean it before you leave). The girls were great little helpers and we got it done in about an hour and then packed the car. It was about 4:30 by the time we got on the road.  We stopped to see Janel & Daniel on our way home and our kids were delighted to play with their kids.  We were told we wouldn't get any results from the CT scan until Thursday or Friday.

Yesterday I took Hailey to her pediatrician's appt here at home (4th doctor's appt this week :-) and then took all 3 of the kids grocery shopping. I have to admit I was pretty proud of myself for that one! Later that afternoon I got a call from Dr. Judd. Hailey has pulmonary ateries!!!!!!! Yea!!! That is definitely a good thing! I don't know exactly what that means for the future, but I know it is good. They are trying to reschedule her surgery for around 4 months, but we are still waiting to hear on that. They also found a blood vessel pressing on Hailey's esophagus and making it hard for her to swallow so they will fix that at the time of surgery.  We will keep you posted on the rest. Thanks for all your prayers! We feel like the pulmonary arteries are a miracle! They are small, but they are there! They will still be doing surgery at Stanford but now they can tie all the little MAPCAs (tiny blood vessels) into the native pulmonary arteries.  We are so excited that she has them!  Here are some pictures of Hailey's CT scan experience and the girls playing at the Ronald McDonald House. That place is amazing!