Hospital Visit, More Meds and my Toes

We have been busy since my last/first post.  With the nights being so hard for Teri to get through and her waking up gasping for air sometimes, she was worried that the her oxygen levels might be falling in her sleep (and therefore the baby's oxygen levels). So Sunday night, she decided to go in the ER/hospital so she could stay the night and they could monitor her levels.  She packed some clothes and some snacks (haha) and walked right into ER ready for her stay.  This might sound like a funny thing to do, but to CFer's it is actually a fairly normal occurrence. To most people, a trip to the hospital has a negative connotation and means something went wrong... it is out of the ordinary.  With CF, something is always wrong, so the hospital is a place that provides rest & relief, knowing that someone is always there in case something things take a sharp turn for the worse.

You may also remember from my last post that they were going to try a new med called Vancomycin, which she was allergic to 5 years ago.  Last night, the doctors decided to pull the trigger and try it out.  Teri called and told me this and we both were a little freaked out because it wasn't set in stone that they were actually going to try it.  But they pumped her with some benadryl, and once that set in, plugged in the Vanco. ... I am happy to say that she had no allergic reaction!  We are both very excited since this is a very good drug for killing the staph, and if she wasn't able to take it, it would have been a great option for her that was no longer available.  They sent her home at about 5 today, and her IV Vanco came to our door a little after that.  We only pray now that the drug is going to be safe for the baby, is going to help Teri get some sleep, gain some energy, and put a few lbs on her.

This morning, I handed Ari off to our friend Tiffany (thank you!) who babysat her for the day.  It was weird leaving this morning for work, because it hit me that Me, Teri, and Ari were all in different places (none of which were at home).  To most parents who use daycare this is normal, but since Teri stays home with Ari, this is pretty rare.  I actually had a moment of slight anxiety, even though I knew she was in good hands.  At the end of the day, I came home to both my girls and we had a "family hug" (per Ari's request).

I leave you with this funny video of Ari doing the little piggy game to my toes (warning, this video contains my toes).  My favorite is the "had toast" one towards the end.  Enjoy.

Babies, CF and how we are coping

As we enter into a new phase of parenting with our second baby, I thought it would be a good idea to start a blog with updates on the latest happenings on both baby and Teri's health. We are super excited to be having a boy, and Ari talks about him everyday. At the same time, we are getting nervous about how well Teri's health is going to hold up through the rest of the pregnancy and beyond, not to mention our worries on if the baby is going to stay healthy in the following weeks given his mom's state.

I for one am beyond thrilled to be having a boy. I knew this was going to be our last kid, so the fact that it is a boy makes it that much more exciting. We didn't find out what Ari's sex was before we had her, and I remember it was hard to imagine what the baby would look like given we didn't know what she was. Now I find it easier to think about, and I have a clearer picture in my head which makes it more exciting I think. Coming up with names has been tough. We had a list of about 3, but now we keep expanding that list as we become more unsure of the originals. Our plan is to go in to delivery with a list of our top 3-5, and then choose one once we see him. I am really not worried about this because I know that one will stick sooner or later, but I have found boy names to be much harder to decide on.

As I said, Ari is just as excited for the baby to get here. Her tune might change once he is here and is crying all day and night and never leaves, so we are trying to milk her positive attitude and hope things stay that way. She always sneaks up to his room and puts his clothes on her dolls. This morning I went up there, and she had every one of her blankets on the floor, every baby on top of them, and ALL the babies clothes laid out all over the room. I know she will be a big help to us when he comes because she is so sweet about those kinds of things, but it will be an interesting transition for all of us I'm sure.

Teri is not having the best time right now. Without getting into the scientific details, I will try to explain what is going on at the moment. I will assume for those reading this, you already know all the things that CF can affect (if not, go here http://www.cff.org/). There are multiple factors attributing to her poor health right now.

One is her lungs. For lack of better terms, they are full of crap and infected. The main infection taking over is STAPH/MSRA, along with a fungus that is growing wild in her mucus called Aspergillus. She is currently on antibiotics to treat the staph, but she has been on them for awhile and they are becoming less effective as time goes on (as antibiotics do when used for a long period). The result of these infections starting to take over is her cough is way more mucusy, and she wakes up during the night coughing and sometimes gasping for air during coughs. Another problem is that she will start coughing so hard that she starts throwing up, which happens during the day and in the middle of the night.

This leads us to the second biggest issue, which is her weight. During this entire pregnancy, she has gained 4 pounds. Yes, she is 31 weeks and she weighs only 4 pounds more than what she weighed at week 1. Obviously throwing up multiple times a day has contributed to this, as well as the typical affects of CF. The baby is growing perfectly fine and is measuring great, so he seems to be taking all he needs from Teri... but that doesn't leave much for her.

Now for some solutions. They put a pic line in on Friday and she is on IV lipids (which is basically fat pumped into your veins) for 6 hours a day at home. To treat the Staph, there is another antibiotic that can treat it called Vancomycin. They tried putting her on this med about 5 years ago, but she had an allergic reaction to it and broke out with a burning itch all over. Being that it is about the only option left for taking out the Staph, they are going to try it again. She is going to the doctor on Monday and they will give her some benadryl and then start it and hold her for a few hours to see if she has any issues.

Needless to say, we both have a lot on our minds right now. There are many fears and it is hard to stay strong sometimes, but we are trying to keep our heads up and stay excited for our son to be. I am amazed at Teri's strength in dealing with all this and am proud to call her my wife and know she will pull through. I am doing my best to help her when I can around the house and with Ari when I am not at work, but it is hard to be there for her all the time. We definitely appreciate all the help we are able to get from family and friends, although this is sometimes a challenge as well since people have jobs during the day and busy schedules of their own.

Stay tuned on the blog for periodic updates on the latest news. Both Teri and I plan to write on here, so between the two of us, we'll try to update it as often as we can. Here are a couple pictures of what keeps me going everyday :)...