Nothing really new...

I had my 3rd IVIG on Thursday. So far so good, just a slight headache every now and then. After my 2nd treatment I had a bit of a hard time the following Sunday. A really bad headache, bad back/shoulder aches... Hoping this week doesn't have anything in store for me like that! The treatments aren't so bad. I get to the hospital early and wait for them to do their thing, which includes giving me 2 Benadryls after a very early morning so I end up sleeping most of the morning. Then my mom has been coming by around lunchtime so I get some food and we hang out for the afternoon. Meghan has come visiting twice which was great and saw Sandy once. Next week Andrew can finally be there a little too, his work schedule hasn't allowed it lately. Everything seems to be going well, my doctor comes over during my treatment to listen to Emma's heartbeat and all has been sounding good and she's bouncing around like crazy. The day before our 5th treatment we have another ultrasound! Can't wait to see her and how she's growing. It's hard to believe that in about 11 weeks she'll be here! I don't know if I'm ready for that!!!

IVIG

Had my first round of IVIG yesterday. We had to be at the hospital at 645a but unfortunately didn't get started till about 830a. I think they were a little busy and I don't think my orders had come thru correctly so they had to track them down. Basically it was just a looooooong boring day. They gave me benadryl and between that and the early morning, I just kind of laid down in the bed and zoned for hours on end. They were supposed to bump up the rate the IG was going thru the IV every 15 minutes (I started at 30 and could max out at 150) but because they were busy my nurse didn't come by every 15 minutes and I felt a little nauseous at one point so I only ever got up to 140. So I finally got out of there about 815p. Made for a very long day but totally worth it... I'll have to try and remember to take a picture of the IVIG bag... it's huuuuuuuuuge. They had me hooked up to the IVIG bag which held about 1250 ml of IG (which equals about 42 fl oz) and a little bag of saline which was normal sized at about 400 ml (which is only like 13 fl oz). I didn't get much of the saline, altogether I probably had about 47 fl oz added to my body... That's like one and a half large drinks at McDonald's. Oh well, I've heard the repeat times aren't as long, so here's hoping that next week I'm not there 14 hours!

Doc Appt

Today we went back to the doctor to kind of get established as official patients, get another ultrasound and figure out the setup for IVIG. They were really nice at the office, just a couple nurses and one doc and were all very friendly and helpful. Looks like everything is going well, Emma will probably end up being an August baby instead of a September baby, but it's not written in stone yet :) After we talked to the doc and nurses we had an ultrasound done and they of course focused a lot on her head and brain, both of which looked great. She has all 10 fingers and toes :) Got a few good profile pics this time and a few 3D shots (even got a 3D shot of her spine and ribs, kind of looks like a fish bone :)). Anyhow, so I start IVIG tomorrow at 6:45a (I skipped classes in college for being too early and they were all at least after 8a!) and they said to expect 8-10 hours so we'll see how it goes! Every week after my appointments I have to stop by the doctor for a quick heartbeat check on Emma and will be doing ultrasounds every 4 weeks unless otherwise needed. Still doing the highest dosage of IVIG and will start prednisone at 28 weeks until delivery which will probably be at 36 weeks. Most likely not going to be doing any invasive checking of Emma's platelets before delivery since Ben's case was so bad, and just in case her levels haven't gotten high enough yet, the testing could cause more harm than good. So now I'm off to eat some dinner and hopefully get to bed early!

God's Hand

If you had of asked me on any day closely following September 13th of last year where God was, I don't know that I could have answered. I went through a lot of questioning, guilt, anger, tears, fears, denial and just about every other emotion there is known to man. I had no idea why we had to lose our son after losing our first baby, Alex, too. It seemed completely unfair and wrong. I still don't know why we had to lose Ben, why he couldn't be like other NAIT babies that make it but might have some issues, but I believe one day I'll know, but when that day comes I'll be so happy to see my two children I probably won't care one bit. I do know that if it wasn't for Ben and what happened to him, and the fact that Andrew and I kind of flippantly decided to see the high risk specialist for the 20 week ultrasound, and that he was so on the ball about suggesting testing for us, and that they made this diagnosis only about a week later than they would regularly start treatment so we didn't really lose any time, I don't know what we would have done. Those were all God things for sure. It's still hard sometimes but I know that He loves us and He's not doing these things to hurt us. I'm just thankful that we know everything we do, we have the doctors that we do and Emma is getting the best treatment for a fighting chance that she can get right now. Off to the doctor now, and we should be getting an ultrasound so we can see her sweet face again. Friday will probably be my first treatment. I'm not really scared, just nervous I guess. I don't know what to expect... Probably just a big case of boredom. But they could have told me that standing on my head all day everyday was the treatment and I would do it without question. Anything for little Emma...

NAIT

Our 20 week ultrasound was done at a high risk office just to be on the safe side (and everything in the ultrasound was great) but the high risk doctor said that based on what he knew about Ben, it sounded like we may have a very rare condition that would in fact affect other pregnancies and we needed to be tested (Andrew and I). So we went in and had lots of blood drawn and overnighted to WI which was the closest place they do this testing. We got the results back yesterday that we do have this condition (the name is super weird, but the abbreviation is NAIT, you can find it on google, but there isn't much info due to it's rarity). At this point Emma hasn't been affected at all and she's fine. The treatment is mainly getting my immune system to stop 'attacking' her platelets. To do so I have to go in weekly for all day (8+ hours it sounds like) IVIG infusions until the end of the pregnancy (which may now end as early as 36 weeks). At 28 weeks I also have to start on prednisone until the end of the pregnancy. They're putting me on the highest does of each treatment for this condition since Ben was such a severe case. My care will be transferred to the high risk doctors and I will see them probably bi weekly and have to have at least monthly ultrasounds to check on little Emma. Prayers are very appreciated at this point!!!