The Great WWW

Throughout our journey since we received Bella's diagnosis, not a day has passed that I haven't been on the laptop researching. I mean, seriously, what did we do before the internet?? I know there is a lot of negative content out there, but for information purposes, it is invaluable. I have researched everything from her condition (Amniotic Band Syndrome), to others who have experienced similar situations, to support resources that might be valuable to me. In all my searching, however, I had not come across a good website  for people who are CURRENTLY pregnant with a fatal diagnosis. There are many out there to help after the fact, but what do I do in the mean time?  Today I felt so blessed to come across a couple of different websites with many resources on what to do WHILE carrying to term (CTT). The one I found most helpful was www.myveryownangel.org. It gave practical ideas about things to keep in mind while I am CTT as well as things to think about for the birth of our baby. I think Bella's actual Birthday, is something that has weighed heavy on my heart for many reasons, obviously, but mainly because I don't want to overlook anything. If my time with her is limited to a few short hours, what do I need to be prepared for to make the most of her life? I felt like this website was helpful in thinking through some of those things. It (along with www.nowilaymedowntosleep.org) also offered some ideas to help support someone you know of that is going through a situation like mine.

I think that my husband and I have reached a point where our unanswered questions are acting as a road block, keeping us from really processing this any further. The list of questions in my notebook continues to grow as we wait for next Thursday (the 7th). I have high hopes that the appointment with my OB/GYN will clear up a lot of our concerns, but the more we think about things, we realize that we will probably end up going back to our specialist, and possibly seeking a second opinion. So pray for us in the next week--that God would give us a clear mind to communicate our concerns with our doctor, and that he will have answers for us. I also ask this of those of you who are reading: If you were in my situation, what would some of your questions be? I am afraid I am overlooking something and I just don't want to miss anything. If you think of anything, you can leave a comment (they can be anonomous) or email/Facebook them to me. I thank you in advance for your help.

As far as Miss Bella Faith is concerned, things are going great! I'm not sure whether she is less active than my first 2 babies, or if I am just too busy to pay as much attention. We do have a late night bonding session going on this week. At about 11:30pm or so, she starts doing some major aerobics! I think she is almost getting big enough that my husband will be able to feel her movements! I know that will be a special thing for him to get to share with me. The other day I had been laying on one side for about and hour and when I got up quickly, I could feel her on that side of my belly! I remember this often with my daughter--to where you can almost tell where her little booty was or her back. With Bella, I find myself being a little thrown off by these "normal" things--like I am not allowing myself to expect them. But once the shock of some new sensation wears off, I treasure them!

Bella's Trip to the Mountains!

Well, we are finally home after a wonderful vacation!! We spent 5 days in and around Denver spending time just my hubby and me, as well as quality time with friends and family! Our trip included quite a bit of shopping, lots of hanging out, some sightseeing, and a scenic trip to the mountains. But mostly...our trip included a lot of this:

We literally took more pictures of the awesome food we ate than we did of ourselves on the trip. We ate at some wonderful restaurants and enjoyed some amazing meals prepared by our hosts!! Such a nice change of pace. We were able to relax and give our minds plenty of rest. But we also were able to allow time to really discuss the baby and work through some of the things that we have been processing and hadn't had a chance to talk to each other about.

Here are some pics of Bella on her trip to the mountains!

We had a great trip but, like always, it is great to be home! I missed my babies! :)

Much Needed R&R

Tomorrow my hubby and I are headed out of the state for some much needed R&R! It is always nice to get out of town and have a change of scenery, but at this time in our lives, it is going to be invaluable. We need the down time to process some of our thoughts, and just rest. Rest our minds, and our bodies.

I had the oddest dream last night. I'm not sure if this is true of every pregnant woman, but with all my pregnancies, I have the most VIVID dreams! I almost feel like they move in slow motion because there is so much time to remember all the details. They are the type of dreams where you wake up and really have to think about whether or not it actually happened. Anyways, last night I dreamed that Baby Bella arrived. I was 23 weeks along and went into labor. The details from the hospital were so defined, down to the nurses faces and the people from our church that came to wait in the waiting room and offer their support. In the dream, I didn't actually get to see Bella. What stood out to me in the dream was this--the doctors and nurses only objective was to get the baby out. They had no plans for her care after that. They had no contingency plan for the possibility that her condition wasn't as bad as the ultrasound showed. I kept asking questions--what if this happens? what if she needs this? --and they just shrugged. I told them that there was no way I was delivering this baby unless they had NICU on standby and had some plan in place.  Obviously, a healthy baby born that early anyways would have a slim chance of survival. But I was just struck by the fact that they did not give her any hope or option to survive.

I think that this dream was born out of the thoughts I've been having lately. I'm not sure if it is the Lord speaking to me, or if I have just forgotten some of the things the doctors told us that day. But lately, I have been filled with doubts about the diagnosis. I am not grasping for some kind of false hope, but I need to make sure I ask all the questions i need to ask and explore every avenue to fight for my baby. I need to make sure that the doctors are not just telling me to give up because it would be hard. Obviously, I don't want to put Bella through a bunch of crazy surgeries, only to leave her with a horrible quality of life--I'm not saying that by any means. I just need answers. Which PART of the diagnosis is supposed to be fatal? IS there anything we can do? So many other questions... I am anxiously awaiting our next Dr. appointment (July 7th). I am keeping a notebook of all my questions. I will not let myself feel guilty for taking up as much of my doctor's time as I need to feel like I have the answers I need.

So that is where I am right now in this process. I ask those of you who are so diligently praying for us and our family, please pray for clarity. Pray that I will know the right questions to ask and the doctors will be patient in explaining things to me. Pray that my hubby and I will have a nice, restful get away that will rejuvenate our spirits.

I won't be posting again until sometime next week. I thank you all so much for your prayers and thoughtfulness in the past weeks. We are so blessed to have such an amazing support system of family and friends.

A Father's Love

They opened the sermon at church today with this video:

It is the story of father and son marathon team, Dick and Rick Hoyt. If you have time to watch the video, it is an incredibly inspiring story of a Father's love. I had seen this video, or some version of it before, but this morning, it about broke me. Since becoming a mother, I can pretty much cry at any video about a son or a daughter--doesn't even have to be a sad video! :) Combine that with a cocktail of pregnancy hormones and the recent events in my life, and I was really afraid I was going to have to run from the service before I exploded in some kind of bubbering fashion. When the words "Because of a tradgedy at Birth" kept playing across the screen, my heart broke.

Take a few seconds to watch this video. Then go hugs your babies. :)

Bella Faith

I appreciate all the heartfelt advice I received following my last post. I'm on the hunt for a children's book that will help us explain our situation to our 3 year old. If anyone has a title for me, that would be super helpful!

This week has been a weird week for me. In many respects, it has been MUCH harder than last week. I think that the "freshness" of the diagnosis has worn off, friends are staring to call and check on us less, life is starting to settle back into a "normal" routine---and our reality is really starting to sink in. It's so odd how in the split second that we learned the news about our sweet baby, all our plans for the rest of the year kind of shifted and changed. Even little stuff. For example, I have not really put away much of the baby gear because we would just be getting it right back out! Now, I'm starting to store some of that away for a time much further down the road. The weekend before our ultrasound, I had pulled out all my maternity clothes to put in my closet. After our ultrasound, they sat in heaps on our bedroom floor for a week because I wasn't sure if I would be needing them. We had already thought through the fact that we would have a newborn around the holidays which would affect our traveling plans--now, that is not the case. All of these things are just little things, but these thoughts will hit me at the weirdest times and catch me off guard.
I also have been starting to feel big and pregnant. I told myself that I would never again for one second complain about being pregnant. (of course, if my next baby makes me as sick in the beginning as this one did, that might be tough to stick to :)  But sometimes, like when I try to sit on the floor and do puzzles with my son and my belly gets in the way, or I get so out of breath doing the simplest tasks, or when it is difficult to pick up my kids or get comfortable to sleep, I really have to work at not throwing myself a big ol pity party. I know it is going to get SO much harder as time goes on, knowing that in the end, I will have nothing to show for all of it. I really have to hold my thoughts captive and not go down the "poor me" road. I want to cherish every moment I get to spend with this baby. While many well-intentioned friends have mentioned that maybe God will take the baby earlier and it would be easier on me--that is not my prayer. I truly want to spend as much time with this baby as possible. I want to be able to hold her at the hospital and kiss her sweet little face and tell her that we loved her every moment that she was on this earth. Obviously, as God is teaching us through all of this, it doesn't really matter what we WANT. He already knows the plans for us. Plans for our good. So I fully trust Him with that. There is freedom in knowing that. Especially for a hyper-planner like myself, it is comforting to know that I don't have to be "in charge" of this (or anything for that matter). That God has it under control. It also is hard to put on my pity party hat because, while this is definitely the hardest thing that I have had to deal with, it is NOT the worst thing in the world. There are so many people going through things a MILLION times harder than this. Of that I am fully aware.
At the end of the day, we are so incredibly blessed. My kids, for the most part, get me through the day. There is never a dull moment. And even on their worst days, I don't go too long without a big hug or a slobbery kiss. And plenty of smiles!


p.s. A lot of you caught in a previous post that I referred to our baby as a "her." At the ultrasound, the doctor could not say for certain the gender of the baby. His best guess was that "it" was a "she." I'm hoping that if we have any more ultrasounds down the road, we will be able to know for sure. In the meantime, I get really tired of calling her an "it." That makes it seem like it is just a blob in my belly rather than our sweet precious baby. So, we decided to go with the doctors guess (plus, we have thought for months that she was a girl)

So "she" is our sweet   Bella Faith  :)

Isn't she a beauty.

Any Advice??

Ok. I have a question for any of you who might have gone through a miscarriage or a situation similar to ours. Specifically if you had older children at the time. Since the day that we got the diagnosis, one of my biggest concerns was, "How do we explain this to Brother?" Obviously Sissy (just turned one) is too young for this to really be an issue with her. But Big Brother just turned three, and those of you that know him well would probably agree that he's not your average 3 year old. He is extremely verbal and observant and comprehends concepts and ideas that are above his age. I don't say that to boast (of course a momma has to brag a little :) )--I just want to give you the background info.  So how do explain to a very aware 3 year old that when mommy goes to the hospital to have the baby, we don't get to bring it home??  My approach thus far is to just not talk about the baby in front of him anymore. Where we used to always give the baby kisses and talk to it, I have just not brought it up to him. Before tonight, he hasn't brought it up either. But tonight, as I was tucking him in, he said, "Can I tell the baby goodnight?"  Then he lifted up my shirt and yelled (because i guess he thinks the baby can't hear if he doesn't?), "Night Night, BABY!!"  Then he asked if the baby was coming out soon....and my heart broke a little bit more.

He was with us at the ultrasound and wondered why mommy was a blubbering idiot. All I told him at that time was that the baby was sick. He said, "Hmm. what do you think would make the baby feel better? I know!! Lightning would make him feel better!" So he took his brand new lightning mcqueen toy car and put it on my belly. *sigh* what a precious, tender hearted, sweet boy.

So I ask of you....do you have any words of wisdom to share?

What to say...?

Yesterday I loaded up the kids and a picnic lunch in their new wagon and spent a couple of hours at the neighborhood pool.  We had a great time hanging out and enjoying the beautiful weather. We were nearly alone at the pool when a fun group arrived--including one very pregnant momma. She looked so adorable with her big tanned belly and her hot pink bikini. Her son was my son's age and they had fun playing together in the pool. So there we were, two pregnant mommas, watching our kids play, and of course, the subject quickly turned to the babies in our belly. We asked the usual questions. When she asked how far apart Sissy and the baby would be, I knew I would have to explain my situation. I worried that she would feel bad or something and then we would sit by the pool in awkward silence. She was so gracious however, and asked many questions about the baby and our situation. She was very sweet, and it actually made me feel better to talk about it, versus the baby just being the elephant in the room.

A lot of people have expressed to me that they don't really know what to say to me. I appreciate their honesty in just telling me that. I think that while people are so kind to offer their condolences, they tend to be afraid to bring up "the situation."  I can't speak for other people that might be going through a similar situation, but for me, I actually feel better talking about it. It gives weight to the situation somehow which helps ground it in reality. I'm not sure if that really makes much sense. I find that I rarely have time or allow myself the time to sit and reflect on the diagnosis or what I need to prepare myself for in the months ahead. By engaging in conversations with friends (and strangers) about it, it almost forces me to actually think about the facts and how I feel about them. Again, I'm not sure if that makes sense. I just share this with you to say--Don't be afraid to ask me about things. If you ever have any questions, I am more than happy to answer them. And if that particular day, I don't really feel like talking about it, I will (nicely) let you know that too. :)

After not leaving the house much last week, we have a full week planned this week. We are trying to squeeze in as many playdates and swim days as possible. Enough moping (for now at least)--Bring on some fun!!