Loud noises, lots of waiting, and jamon serrano

I was feeling so hopeful this morning. School went by so fast, I had to stop and get gas, and I was on the road. I found the MRI place easily enough, but the parking was so confusing, I just decided to call. I'm glad I did! The receptionist told me just where to go and I used Valet. She said the only other option was to park a few BLOCKS away and wait for a shuttle. So, the $5 were more than worth it on this cold day! The hospital was an absolute maze, but all the people I encountered were so friendly. Still, I'm kind of hoping we won't be delivering over there, unless of course it's the best for Lucy.

After waiting a while (I was 40 minutes early, after all), they brought me a key and asked me to change into a hospital gown. They took me back for the MRI and I was amazed at the size of the machine! Also, it makes a funny old squeaky washing machine noise that I didn't expect even when they're not actually taking images. I laid down on the bed (more of a table padding-wise) and they put a big cushion under my legs. So far so good! They gave me some ear plugs for the "loud noises" and then they lifted the table to a few inches away from the top of the tube and sent me in. I am not claustrophobic, but I will admit that the first 30 seconds or so in the machine, I think I almost had a panic attack. Not that I've ever had one, but it was pretty terrifying just for a moment and then I calmed myself down and reminded myself that I am a BIG GIRL! The noises that everyone had warned me about were not that bad at all. The worst part of all was having to hold my breath for quite a while several times in a row. After doing it three times in a row with about a 10 second rest in between, I had a pretty strong Braxton Hicks contraction and the baby was jumping. It was pretty intense, but it went away, so we made it through the 45 minutes or so in the tube. They sent me to get dressed and I sat in the waiting room again. About a minute after I sat down, they called me back for more images. Haha. So much for being quick at getting dressed! So, I went back in for about 15 more minutes. They tried to give me earplugs again and I turned then down. I told them I was a kindergarten teacher and the mother of a 15 month old. Loud noises for me fall into one of two categories: Loud noises that require my immediate attention and loud noises that do not require my attention. Most of the loud noises in my life fall into the first category, so the MRI machine noises were almost like music to my ears!

After the second time in, I changed back into my clothes and they sent me to another waiting area. I spoke to a very nice doctor, Dr. Twickler, about what she was seeing. She believes that the hernia is not left sided, but right sided and larger than we expected. She is seeing not only the stomach, but also about half of the liver, and a small part of the intestine up in the chest cavity. Unfortunately, this is all worse than originally expected.

After that I rushed over to Medical City to Dr. Kao's office. I was half an hour late since the MRI took so long, but it was fine with them. They took me back and I had a sonogram. The tech is really nice and told me about his twin girls and their teacher at school. It was nice to talk to a grownup about normal things for a while. (On a note unrelated to the baby, he told me that the parents at his daughters' school have to get in a lottery system to be able to volunteer because of the sheer quantity of parents that they have who want to volunteer!! That's great!) So, after the sonogram, Dr. Kao told me that the tetralogy of fallot is still there and that the biggest problem is that the pulmonary arteries (artery?) are very narrow and will most likely require a shunt soon after birth. Unfortunately, she doesn't really know what that will look like with the hernia situation. Also, she doesn't know much about Mosaic Trisomy 16 and wants me to talk to a geneticist, which is fine, but I doubt they will tell me anything I haven't already found out from other MT16 parents and from www.trisomy16.org. She said that with the two issues, and the fact that she is growth restricted and will likely be born pre-term, the probability of mortality is very high.

So, where do we go from here? We can't go anywhere but forward. Hopefully by the end of this next week, we will have made plans for where I will be delivering, at least. I would like to say that I'm still very hopeful, but really I'm starting to wonder if I'm sugar-coating things. Either way, I know it will be alright in the end, but I feel like I just don't have the strength to plan for more than a birth and probably a death. I bought one pretty blanket for her, just in case, and I am going to buy a pretty little gown that I'm hoping she will wear alive. I don't want to be pessimistic, but I also don't want to head too far in a direction that God hasn't opened up yet. Please keep praying for us! Maybe Lucy will be the one baby who defies all the odds! There always has to be a first baby to survive something, right?

My Bible-in-a-year plan is currently on Joshua, so I was listening to the beginning of it in the car. I can hardly stand the radio anymore. It's hard to listen to people singing about frivolous everyday things when you have life and death matters on your mind. So, I've been taking advantage of my Blu tooth connection and listening to the Bible in the car. Joshua and Caleb were the only Israelites that God allowed into the promised land from their generation because they saw a situation that to any human eye looked hopeless and said that God would do the work and give them the land. Of course, they had the promise ahead of time that God was going to give them the land. I don't have a promise from God that Lucy will live, but I do have the promise that God works for good in all things for those who love Him and are called according to His purpose. So, I suppose that's my dilemma. Should I hope for survival and plan for it or should I just hope in general and not prepare anything? I guess I'm just struggling with being still and waiting. Yes, that's what it is. I'm having a really hard time being still. I want to plan, to buy, to organize, to move on, and really there's nothing I can do. The doctors want to plan, and do, and talk, and test, too, but I was really thinking today about just stopping all of the appointments. I know I can't do that at this point, because if I did I would most likely forfeit any chance of Lucy having a concrete intervention plan at birth, but it is very tempting.

Well, I guess that's enough rambling for tonight. I really appreciated a comment from Liz on my last post. (I appreciate all of your comments!) She told me about a baby who had a 1% chance of survival and is alive today! So, now we just need to wait and be still and let God say what will happen next. Please keep praying for us!

P.S. - I just remembered that I referred to jamon serrano in the title. Since it was right at 5 when I got out, I stopped at Central Market and wandered around. A good friend had invited me for dinner at her house, but I knew that if I was with friends, I would be crying and embarrassing myself, so I opted for the anonymity of the grocery store. I left with a few good things: Love Dip (very good, but very garlicky!I think they must call it that because whoever you're around after you eat it better love you.), sweet potato chips, a chirimoya (Emilio's mom has these in her back yard in Peru, but we had never seen them here!), and some jamon serrano for my husband. It's a good thing I don't live close to a Central Market anymore because I think we would spend too much money there!

Here's the verse I was referring to earlier:
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28