She finally did it!! Zoe rolled over today all by herself. I could only get her to do it once however. On Monday she rolled over a few times but it always took a lot of work and then today, Tuesday the 20th, she finally really figured it out. She rolls over the second you put her on the floor and she will do it over and over. She's getting much stronger with her arms also, she can move her arms after she is on her stomach and support herself with one arm. She is strarting to kick her legs also when she is on her stomach- it's so cute. The picture below is the first time she rolled over by herself.
The other big news about Zoe happened last week. Jason, Zoe and I had a whirlwind day at Seattle Childrens Hospital last Thursday, the 15th. We got some good news some bad, or not necessarily bad, but news we were hoping wouldn't have to happen. She has been on this pulmonary hypertension drug, Bosentan, for about a month and a half now and it seems to be having some adverse effects on her liver. Her bile ducts appear slightly enlarged and seem to be backing up some sludge a bit into her liver giving her higher enzyme levels than she should have. So to remedy this she is starting a drug called Ursodiol. I met with the GI doctor today and she doesn't seem too worried about the high levels. She seems to think with time and medication it will resolve itself. It could be due to all the meds she's been on, the TPN liquids she was on at the hospital or a combination of things and just something that finally caught up with her. It doesn't seem to be affecting Zoe at all. She is still super happy and not in any pain, which were the GI doctors concerns.
The disappointing news is that Zoe will have to be starting a continuous IV drip of a drug called Flolan for her pulmonary hypertension. Since the bosentan doesn't seem to be doing what they want it to, Zoe's cardiologist wants to start her on Flolan sooner than later. Zoe's echo showed no great inprovment in the hypertension. Nothing looks worse and her heart still isn't strained at all, but she wants to catch it while she can. I'm a bit paranoid about this new drug just becasue the medicine has a half life of 4 minutes, meaning that it leaves her system in 4 minutes if the line is broken somehow. Even though Zoe is incrediubly stable right now, this new drug can alter her lung pressures so significantly that if the drug were to leave her system it could cause a huge collapse of her respirastory system, therfore if something were to happen to her line, we will need to call 911 immediatley. Right now it all sounds incredibly scary but I also know that there are many parents and children that have gone through this so we can too. This IV is called a broviac line, it is a permanent line that is put in around her shoulder and goes in towards her heart. They are hoping to have all this done in the next month or so. Before all this is done, Jason and I will have a lot of training to do that is done at home and then Zoe will be admitted to the hospital for the procedure and will be there several days while they figure out what level to keep her at on the Flolan. At the same time this is done we are hoping to get a G tube put in for her feeds. She has gotten so good with her hands that she will pull out her NG tube 3 times a day. The doctors say all this shouldn't affect her being a noramal baby, learning to crawl and all that stuff. The cardiologist still seems really hopefull and encouraged about Zoe becasue she is growing so well and developing right on schedule. Her heart rate and respiratory rate get better every day and she breathes so easily now, even off oxygen.
Jason and I are trying to not get to discouraged about all of these new developments and just consider it another stepping stone on this journey. Really none of it matters the second Zoe smiles. SHe is the most amazing baby, so happy, so content and so full of adoration for us. She loves reading books every morning with my dad and having bath time and snuggle time with us. Anytime she gets to go out in public she loves it, she is fascinated with lights, people and the giant fish tank at a local restaurant. We'll keep you posted as we know more about all of this. Once again, thank you for all your continued prayers and support and please keep Zoe and the two of us in you thoughts and prayers through this next big step.
