First a little more details of the day at Children's, for my memories if nothing else! We started with another detailed ultrasound. The baby was in a not so good position for getting pictures, so that took awhile. We did get to see him pucker his lips out and move his arms up to his face. He also go the hiccups again. A doctor we hadn't met before came in to go over those pictures and she scanned a little bit more as well. Apparently she thought his heart looked enlarged (she never actually told us this) and scheduled us for the fetal echo of his heart.
After the ultrasound, it was MRI time. I haven't had one before and was very nervous. They had me lay on my side and wrapped my belly in this giant plastic rib cage looking thing, then strapped me down so I couldn't move. I could not let myself think about the fact that I couldn't move or I would've gone insane! I do get very anxious when I can't move or in tight places like the tube they slide you in, but I'm also pretty good at relaxing myself and getting through it. So I used what works for me which is keeping my eyes closed, having air blown on me (the machine does that), thinking of anything else I possibly can and then they gave me headphones to listen to music which helped as well. It seemed to take forever, but it was only about an hour. It was so loud and the baby moved a lot from the noise. My belly also go really warm when they would take the pictures. Overall, I was happy I did it and didn't fall apart!!
Next we ran to the cafeteria for lunch as we were running behind on time, but it was past 1:30 and I hadn't eaten since 7:30 and was starting to feel the effects of that. So we grabbed some pizza (they have LaRosa's and it was just as good as in the store) and some Sprite (a big craving of mine right now) and ate as quickly as possible and then ran up to the RCNIC for the tour. The nurse showed us all the rooms, though we couldn't go in for privacy reasons, and she showed us all the family rooms and explained the procedures and everything. Plus she showed us all the ways they make breastfeeding as easy as possible there with freezers in the hallways just for breastmilk, rolling curtain panels for providing privacy if you want to pump at the baby's bedside and also they have pumps and bottles you can use, you just need to have your own set of shields and tubes (which they will also give you!). I thought that was very encouraging! I didn't realize how many babies would be in there, but they have 6 or 7 rooms with 6 or 7 babies in each room, plus about 10 private rooms in the back for long term babies. It was a lot of babies.
Well after the tour we went back to the Fetal Care center, that's who we're working with during all of this and they told us we needed to run down for the echo which had apparently been scheduled without us knowing and now we were very late for that. So we ran down for that, and got right in. For some reason the baby was in a much more cooperative mood this time and they told us they got fantastic shots of his heart and found absolutely nothing wrong. They saw all parts working properly and not genetic defects at all. So that was a big relief.
So then, we went back the Fetal Care center and had our meetings. First with the geneticist, which took a big family tree and then answered any questions we had about what was going on. We met with a nurse, for just a minute and then we were ready for the big meeting. We had been waiting in a little room and they came to tell us they were ready for us and when I walked in the doorway, I was very intimidated. It was like a big boardroom, with the big table in the middle. On the one side was the surgeon and his nurse, both with laptops open and ready, there was a small desk in the corner where another doctor was seated and she helped with the presentation, then the Dr. we saw last week was at the end of the table with his laptop, there was a huge presentation screen up and showing the ultrasound and MRI pics of our son, and then they had two visiting doctors one from China and one from Japan who were just sitting in. Then we sat on the other side of the table with the geneticist. So many different feelings washed over me in that second. First, wow! Look at all these people here to help our son. Second, wow! Is he really that sick that we need all this? Did all these people have to give up their time to help us? I still can't believe it. It's just so surreal.
So the meeting started with going through a lot of the ultrasound and MRI pictures. No one had actually pointed out the cyst to us before, so when they did here, I was speechless. It's huge, even the surgeon said so! It is literally the same size as the rest of his entire belly. I knew it was big, I just didn't realize it was that big. So the surgeon, who was very nice and knowledgeable and helped put me at ease, explained to us what is normally seen with each of the two types of cysts they believe this could be. One type only consists of the cyst and no other characteristics, the other type usually shows up with other things happening as well. Well they could not find any evidence of the other things happening which leads them to believe it's the first type. But they were very clear that this does not clear us of it being the second type. It just looks like at this time, that it's probably not. This was good news because the second type was the more scary type and the one that could be from cystic fibrosis. Well either way, the treatment would be the same with the surgery to fix the problem and a probable 7-10 day hospital stay.
So that's pretty much how the day went. I felt so relieved, knowing that we have a good chance of this being something that's easily remedied (well I guess if surgery on a newborn is easy), and a good prognosis. So tomorrow I meet with my regular OB and we'll discuss my options as far as whether or not it's a good idea to try and turn the baby, and if so when, and if not when to do c-section. I'm eager to know some "whens". I feel like that's the last piece of my puzzle. We have such a huge support group with our family and friends and church that I know everything will be covered, but I"d just like to have some time to work everything out.
Oh and baby shower update! I didn't take pictures at the second shower (I actually didn't take them at the first shower either, Abby and a cousin did!), but I'm happy to report that after two showers and a few gifts in the mail, we are pretty much finished with shopping for this baby! Just in the last week we've gotten:
swing, bouncy seat, bathtub, booster seat for kitchen chair, diaper bag, changing table pad and cover, breastmilk storage items, boppy pillow, nursing cover up, monitors, lots of towels and washcloths, lots of clothes, lots of blankets, a waterproof crib pad, a health kit (thermometer, aspirator, etc..), picture frames, sippy cups, bowls, spoons, a stuffed Eeyore, medicine, toys, pacifiers, and many other things I'm sure I'm forgetting. We already had the crib and changing table, the stroller and carseat and lots of clothes, diapers and wipes. So we're set!! We're so very blessed to have such generous people in our lives. They've made it so easy for us and we couldn't ask for more.
I just can't wait to meet our new little guy and be able to hold him and snuggle him. And reveal his name, so everyone will quit trying to pry it out of me and the children!!! Well I better go now, it's time to get ready for church now. Have a great day!
1 comment:
Wow. Still praying for you. Glad you have it all covered.
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