Trying for hope

The visit to the funeral home and cemetary today was pretty awful. At the funeral home, we had to pick out a casket and flowers, and talk about some of the basics of how the service will work. We then went to the cemetary to pick out a grave site and head stone and discuss the basics of how all that will work. It was terrible. I just couldn't believe we were there planning our son's funeral. And, at each place, when it came to talk about payment, I just couldn't even put down a deposit because that meant that we had accepted that Brady is definitely not going to make it, and I just can't accept that yet. I feel like I still have to have hope for him because it just feels wrong to give up on him while he is still alive. He's my son and giving up on him now is like giving up on someone who is dying of a terminal illness. Sometimes those people beat the odds and miraculously live, at least longer than the doctors estimate, and I have to think that there is a chance that Brady could do that too, even if it is the slightest chance. How do you give up on someone that you love with all your heart? I can't do that to him.

What is difficult is trying to plan for Brady's funeral while still remaining hopeful. I want to spend some time planning for his funeral just in case it does happen because I want to make it so very special for him because he deserves to be memorialized and celebrated the best way we possibly can. But planning for the worst outcome also makes it hard to be hopeful, so I know that my emotions will be on a roller coaster as we make these plans, but I'm okay with that because Brady deserves it. So if you have any ideas on good ways to celebrate him and memorialize him, please let us know what they are.

So, despite the time at the funeral home and cemetary this morning, today was a little better than yesterday. I did break down once this afternoon, but it didn't last too long. I'm trying to stay positive and happy and strong for Brady, so that he doesn't feel any additional stress. I still want to give him the best chance possible. Every one of his movements that I feel is a wonderful gift that puts a huge smile on my face, so I look forward to those every day. He seems to be the most active when I eat, so I look forward to my meals even more than before :)

I want to touch on one more thing that I haven't spoken about enough before. Paul is the best husband and man that I know and I thank God that He put Paul on earth for me every day. He is compassionate, empathic, emotional, and strong. He has been so incredibly strong for me throughout this entire experience, even when he is feeling upset and vulnerable. He has taken care of things when I haven't been able to, and he constantly gives me love and support. He has also been such a wonderful father to Brady, reading to him almost every night and talking to him and kissing him. I could not ask for a better husband, and I couldn't imagine going through this without him. I just hope that I have given him the love and support that he has needed as well, and that I will continue to do so because he deserves it. I love him so much.

Please pray for me and Paul to have the strength and hope we need to get through this, and please pray for Brady that he will continue to be able to fight his condition, despite the negative news we received yesterday. None of us know what God's plan is for Brady, and I do not want to give up and assume that God's plan is to take Brady soon. If that is God's plan, I will accept it, but if not, I want to continue to hope and pray that Brady will make it through this.

Another bad appointment

Well, today didn't go well like I had hoped. We had the ultrasound this morning to see how Brady is doing. He wasn't moving around much, like I had suspected since I haven't felt him move much in the past week or so. His brain and kidneys were looking good, but he is now measuring 20 weeks, which is 4 weeks behind. 5 weeks ago, he was only 2 weeks behind, so he is falling further behind in size. We found out that the reason for this is because the blood is flowing backwards out of the placenta when Brady's heart relaxes (from pumping), but it's still supposed to be flowing forwards during that time, so he is not only getting fewer nutrients due to the single umbilical artery, but also because the blood isn't always flowing towards him. This signals that the placenta is starting to malfunction, and the doctors think that Brady may only have 2-4 weeks left before he passes.

This was a major blow to me because I have been trying to be so hopeful since we found out about Brady's condition. Paul has been expecting this all along, so he is taking it a little better than I am, but it's still hard for him. So now we are trying to finish our plans for Brady's death. Tomorrow we are going to meet with a funeral home and cemetary to discuss our plans for his burial. We also ordered some Hokie clothes for him to wear when he is born and to be buried in. Now we just need to figure out what we want to bury with him in his casket and what we want to do at his burial service.

This is so surreal for me. I've been trying to be so hopeful this entire time that I haven't really allowed myself to fully accept that this outcome was the most likely one. Now that it's almost 100% definite that he will pass before being born, it's so hard for me to deal with. I'm trying so hard to continue focusing on spending time with Brady while he is alive and to take one day at a time, while still trying to plan for future events so that we are prepared when it happens. After he passes, I will have to give birth to him, and that will be the most difficult and awful thing I have ever had to do (and hopefully will ever have to do).

So now it's just a waiting game. One day, I will wake up and use the fetal heart monitor and find out that Brady is no longer with us. Until that day, I will try my best to cherish the time I have with him and find the good times in every day. I will just have to accept that this was God's plan for Brady and that he has fulfilled God's mission and is ready to be taken to heaven to wait for me and Paul to join him. I know how much he has already changed my and Paul's life, and I like to think that he has had a positive impact on your lives as well. Please pray for us to have the strength to come through this stronger than we were before. Thank you all for your support and love.

Positive thoughts

This week hasn't been as bad as I expected, thankfully. I have been really busy with work and that has helped keep my mind off of the impending doctor appointments. I continue to try to just focus on each day as it comes and enjoy the happy moments of the day. I have felt Brady less often this week, but I'm wondering if that's because of his positioning because when I check his heartbeat, he is always moving around even though I can't feel him. He is still sitting super low, so that might also contribute to not being able to feel him as often. But he was definitely kicking last night during story time, so he must really be enjoying that!! Paul is getting even better at his story reading and wants to focus on getting even better at making the story more dramatic and realistic :) He'll be a pro by the time Brady is born!!

Thanks to a few friends, I have a couple of bins of maternity clothes that I can wear, so I won't have to buy many at all! But I am going to buy some maternity jeans this weekend. I think jeans are the one piece of clothing that is really personal in terms of fit and style, and it's so nice to have a really great pair of jeans that make you feel good, so I will definitely splurge on those. Otherwise, I think I might be doing pretty well with clothes.

I also finally finished my baby registry! I am also reading baby books now that I'm past the midway point of the pregnancy. It's really nice to focus on how I'm going to take care of Brady when he is born instead of thinking about how well or poorly he is doing now and what might happen. It really helps me to be hopeful and just go through life and make plans as though he is going to be fine, because maybe he will be!! I don't even think I can wrap my head around the other alternative, so what's the point in thinking that way, right? So, I am looking forward to buying a few special outfits for Brady to wear on the day of his birth, attending my baby showers, and decorating his room. One of the things I really want to splurge on is decorating his room, so we've picked out a cute bedroom set and I'm going to try and decorate everything really cute to match it. And we'll have our painter paint the walls and maybe do something really cute with that. I can't wait! Of course, Brady will be sleeping in our room for the first several months, but he still needs a cute room, right?!?! :) I think focusing on decorating his room will really help my mood too, and it will be fun!

So that's the update for now. I will be 24 weeks along tomorrow. 2 more weeks until I start the third trimester! I just saw my best friend this weekend who is around 38 weeks along and she was totally popping, but her belly was just this little ball in front of her. It was so cute! She's having a little boy too, so Brady will have a friend close in age :) Paul can't wait for me to be popping like that too, and I'm looking forward to it too. The more I grow, the more Brady shows me he is growing, so I love it!

Thank you all for the loving thoughts, notes, and prayers. You are keeping us hopeful and positive during all this!! So keep them coming! :)

Rough week ahead

This past weekend was so much fun visiting our friends in Virginia Beach who we hadn't seen in 8 years! It was really great to hang out with them and their kids. We had such a great time. And when we got home last night, I printed out more landscape pictures from some of our past vacations to hang in the hallway, which I was really happy about getting done. Tonight we will hang them and print out VT landscapes for the collage frame for our bar room. It will be nice to get some more decorating done in the house.

However, even with all this good stuff, I'm starting to have periods of depression and sadness. On the drive home yesterday, I started crying because of thinking about Brady and the uncertainties we are facing. Spending time with our friends' kids this weekend was so much fun, I think it made me think about how different it's going to be with Brady and the possibility of not having that time with Brady. And I'm getting upset again today too. I hate feeling this way. I like it much better when I'm feeling happy and positive.

I think I'm starting to have these feelings because we'll be going back to those doctor appointments next Monday, and I always seem to start having negative thoughts a week before an appointment. I'm really afraid of what we are going to see in the ultrasound and fetal echo. I'm so excited to see Brady, but I'm afraid of what the doctors are going to say. Part of me doesn't want to keep getting these updates for fear that they will show us that Brady is doing worse than we think or hope, and I know that the only way I am getting through this pregnancy is because of the hope that I have for him. So if we get more bad news about him, it will really chip away at that hope and make it harder to get through the next 4 months. But at the same time, I want to be prepared. I guess we'll see how next Monday goes and then make decisions about how often we want to get updates from there. I know that these prenatal tests aren't conclusive because they are limited in what they can see, but it's still hard to get the results. Hopefully the cardiologist will say that his heart condition isn't that bad, but I guess we'll see next Monday.

Please pray for me and Paul to have the strength to handle whatever news we get next week and remain hopeful despite any negative information we receive from the doctors. And please pray for Brady that he is able to fight and beat the odds.

Bump Watch - 8/20/2010

Today I am 23 weeks pregnant! It's crazy to think that in 3 weeks I'll be in my third trimester. This trimester is definitely going faster than the first. I am measuring 38" around my belly now, so I've gained another half inch since last week, which is a good sign. I am feeling Brady kick a lot more often now and with more strength. Paul and I can even see his pokes from the outside sometimes, which was really cool for him to see!

I am feeling much better after this week. I got to catch up on my sleep and on chores around the house. I also got to exercise one day, which was great! I am starting to feel more uncomfortable now sometimes when sitting in certain positions, but it's not too bad yet. I ordered a body pillow for sleeping, so I'm excited to get that!

I've really gotten good at focusing on each day as it comes and the good things about that day, rather than worrying about the future. This change in attitude is good for me overall, so I have Brady to thank for that! :) This weekend we are going to Virginia Beach to visit some friends. It will be our last trip out of town until Jenny's wedding in October, so it will be nice to take a break from traveling. College Football season starts in 2 weeks. Can't wait!

What a crazy week it has been

The weekend in Boston with my sister (Jenny) and Mom for Jenny's bachelorette party and bridal shower was really fun but definitely exhausting for a pregnant girl :) On Saturday, we went to lunch, then hung out in the afternoon, then went to a late dinner. After dinner, the other girls took Jenny out for some dancing and drinking while I went back to the hotel room to sleep. I made it until 10:00, which I thought was pretty good :)

Unfortunately, during the day my Mom found out that her Dad was in the ICU, so she ended up having to leave a day early in order to go home and then go to Ohio on Sunday to see him. He ended up passing away on Sunday before she was able to see him, but thankfully she had seen him just a few weeks before that and had spoken with him on Saturday, so she felt like she had been able to say goodbye. But it was still hard for her. Despite going through that, she remained strong and took care of all the stuff that needed to be taken care of to get ready for his funeral and start figuring out what to do with his house.

My Mom is such a strong woman and I like to think that she has passed that strength on to me. In difficult times, she will take the time to break down and get upset, but when needed, she is able to push that aside and take care of things. I really admire that and I hope that I'm able to do that for my children when they go through hard times, and I hope that I am doing that well for Brady now, because he needs optimism and love even in the womb, so I don't want to focus on too much negativity or sadness.

So, on Monday, I came home from Boston and worked Monday afternoon and Tuesday. On Wednesday morning, we went to our next OB appointment. Before the appointment, we met with Lisa (the social worker who is working with us on scheduling appointments and just basically figuring out how to get through all this) to take a tour of UNC Woman's Hospital. It was super nice. We got to see one of the delivery rooms, which was so nice. The rooms are really large and completely private, with a private bathroom. They have a couch to sleep on, tv, music, and what looks like a fairly comfortable bed. There is even a little area for the baby to sleep with a warmer over it, so that Brady can be in the room with me, unless he has to go to the NICU.

When we were in the room, we discussed how we want delivery to go, and Lisa said that we could make decisions such as whether we want the blinds up or down, what music we want on, if we want Brady to be cleaned up before given to us or if we want him put directly in my arms after he's delivered. So many things to think about! I had no idea! But I'm so thankful that I have Lisa to bring those things up and help us make those decisions. We then went to see where we would prep for a c-section, if that becomes needed.

After the tour, we met with our OB. I had my blood pressure taken, and it was still a little high (134/84), but still much lower than it had been at the beginning of my pregnancy, and it hasn't increased since the last appointment. They now want me to take my blood pressure once a week to make sure it doesn't increase drastically in between OB appointments, since I'm a little more at risk for preeclampsia because of Brady's single umbilical artery in the placenta. They also weighed me and I was 148 lbs, so I only gained 3 lbs since my last visit 4 weeks ago. Hopefully that just means that Brady is growing but I'm not ;)

We then spoke with the doctor about our plan for delivering Brady. We had decided that we wanted a scheduled c-section to reduce the strain on Brady during delivery, so that he would have the best chance possible of survival and minimal trauma to his spinal sac (from the spina bifida). We were told that in a typical pregnancy, if the baby is in distress and it is determined that he will do better outside of the womb, they will induce labor or do a c-section before full term in order to get the baby out of that situation. However, with a T-13 baby, they would not recommend that because the baby has a much lower chance of survival.

Paul and I hadn't really discussed if we would want to get him out early if he was in distress yet, so we talked about a c-section and the doctor said that having a c-section before full term would be risky because the uterus isn't wide enough to do a horizontal incision, so they would have to do the old school vertical incision. With the current horizontal incision, there is approximately a 1 in 200 or 1 in 400 chance of rupture in a future pregnancy, which is pretty low. With the vertical incision, there is a 10% chance of rupture, so my doctor said that she would not do one for me. Paul and I agreed that it would be too risky, so we decided against do a pre-full term c-section.

We then discussed the possibility of a scheduled c-section for full-term delivery. The doctor asked the reason we wanted to do that, and we said we wanted to give Brady the best chance of survival and minimize additional injury. She said that the research on spina bifida requiring c-section to reduce injury is inconclusive because the test case groups have been very small and they haven't really been followed up on, which seemed to agree with what I have seen so far on that topic on the web. She said that the doctors at UNC had just reviewed that research that week in order to update their policies on spina bifida babies in general and they had decided to do vaginal births instead of c-sections because the research is inconclusive. So for our situation, she recommends the same course of action, but that we would monitor Brady closely and if he goes into distress, we will do a c-section.

Paul and I feel comfortable with that plan, so we are happy we were able to discuss it with the doctor. Many T-13 babies have gone through a vaginal birth just fine, so we feel that it makes sense to see if Brady will be able to handle it, and if not, we can then do a c-section on the spot. We feel comfortable that the doctors and nurses are good enough that they will take care of Brady if he isn't doing well at any point (there is a central station where they can monitor me and the baby even when they aren't in the delivery room).

After the appointment was over, we made follow-up appointments for August 30th to get another ultrasound, a fetal echo, and meet with the neonatologist. The fetal echo is a type of ultrasound that is able to target the heart and get a more accurate picture of the structure of it. After the echo, we will meet with the cardiologist to ask him questions about what he sees. The neonatologist is a doctor who focuses on the care of infants, especially ones that are ill or premature. I think they run the NICU and manage the neonatal nurses. He will be able to answer questions about the care that Brady will receive after he is born and the possibility of various surgeries (for the heart and spina bifida) after Brady is born. So August 30th will be a very long day, but we figured we would just get everything over with at the same time.

After the appointment, we got on a plane to Ohio for my Grandpa's funeral. The viewing was Wednesday night, and that went fine. The funeral was Thursday morning, and that was a little difficult for me because it made me think about the bad possibility of Brady not making it, so I was really glad that Paul was with me to support me through that. We got home super late Thursday night, so Friday was a little rough. The weekend was also tiring because we had a lot of errands to run and chores around the house, but I got to go to a concert with some friends on Sunday night, and that was really nice because it got me out of the house and having fun and not focusing on this situation. Brady seemed to like the music :)

I have really begun to wear a lot of maternity clothes now because of my growing belly, so that's a little weird to transition to. Brady is sitting really low, so it's just not comfortable trying to fit into regular shorts anymore, even with the belly bands or rubber bands.

I continue to use the fetal heart monitor every day and it continues to give me peace. I'm still unsure about the "movements" I am feeling, but I gotta think they are Brady since I never felt these kinds of movements before I was pregnant and they are so random that they don't seem to correlate with anything else (like gas :)). According to one of my books, Brady is supposed to double his weight in the next 4 weeks, so I'm really hoping that means I will start to feel more substantial movements by then. I'm really interested to see how big he has gotten at my next ultrasound. I really hope he has started to catch up and isn't further behind, but we'll see.

I still have my moments of breaking down, but they pass pretty quickly thankfully. They usually occur when I am stressed about something else or just plain tired, so that is pretty normal. Otherwise, I just try to focus on enjoying each day and connecting with Brady. Paul is continuing to read to him every day, which is really nice, and he talks to him and kisses him. It's really nice that he's connecting with Brady too.

Thank you all for your continued support through all this. We really appreciate it and are so grateful we have such wonderful family and friends. This situation would be much harder without you.

Kristie's Bump Watch

Today I am 21 weeks along. Each week that goes by gives me more hope for Brady. He is going strong and likes to move around a lot. Last night I got a massage and it felt wonderful. I'm going to have to go more often to get these knots out of my back :) Hopefully the massage increased my blood flow to Brady, so that he gets more nutrients! There's really no change in the bump this week or in my waist size, but that doesn't mean he's not growing. Who knows how all that works in there!

Today I leave for Boston to visit my sister for her bachelorette party and bridal shower. It's Brady's first time on the plane, so I'm hoping that he takes it well. It's also his first time meeting his Aunt Jenny, so I am very excited! It will be a lot of fun and really nice to spend time with my sister. It's been too long.

It's amazing what a heartbeat can do

Today has been another great day so far. Hearing Brady's heartbeat again this morning was so wonderful. It just makes me so happy and increases my hope for him. I really want to stay positive and hopeful for him because I feel like that will help him to fight this! It is just so amazing how much more hopeful and happy I am today knowing that Brady is alive and kicking :)

I'm really starting to think the muscle twitches I keep feeling in my lower abdomen are him. I felt one right after Paul kissed Brady goodbye this morning, and I'm feeling them more and more often recently. I love the feeling that I might actually be feeling him finally! I can't wait for him to get bigger, so that I can feel him with even more certainty and frequency.

He's still sitting really low in my abdomen. I hope that doesn't mean he's not growing, but since I gained an inch last week, I'm hoping that means he is growing just fine. Hopefully I will gain another inch in the next couple of weeks. I really want to see some progress there, but I guess I will see some progress next Wednesday when I go to my OB appointment and get weighed. I'm really hoping I've gained the 4 pounds that I was supposed to have gained in the past 4 weeks.

This week I'm also feeling a lot more energetic because my chest cold is FINALLY over! It was holding onto me for 3 weeks, and that really made me feel run down. So this week I started exercising again and it felt GREAT! I tried going back to swimming yesterday morning, but it just didn't feel as good as it did earlier this summer, so this morning I road my exercise bike and did a few light weight lifting exercises, and that felt SO GOOD!

I am so excited to have my energy back and be able to work out again. I really missed it, and I think that run down feeling was making it harder to deal with this situation. I'm going to keep up the exercise to help my body be in the best condition for Brady to grow and thrive. My focus is to keep Brady's environment in prime condition, so that he has the best chance possible.

Every time I think about him, I smile. So, please think of him often and smile and pray for him :)

We have a heartbeat!

Yesterday I ordered a fetal doppler on the web to rent, so that I could check on Brady each day. FedEx just dropped it off and I checked for Brady's heartbeat and found it!! YAY!!! And I timed his beats and his heartbeat is 140 beats/minute, which is consistent with what his heartbeat has been at previous doctor appointments. This makes me SO happy! Now when I talk to him every day, I will know that he's alive and listening to me. That is such a huge gift for me. Every day that he is alive gives me more hope for his future and helps keep me connected to him. I am so thankful that this doppler worked and I was able to get it so easily. Hopefully I will be more at peace now.

The next step in this process is to plan for Brady's death, which is going to be extremely hard. We need to look at our options and determine what we want to do (burial or cremation? if burial, where in the area?), so that we are prepared if it happens. This will cause me the most trouble in keeping up my hope, so please pray for us that we have the strength to get through it, so that we can move on to planning for his treatments, which will be much easier and give us hope that he will live.

Every day is a struggle, but we are trying to stay positive and remain hopeful. Thank you to everyone for all your support and love through all of this. We love you!

Brady update - 8/1/2010

As you saw, last week was actually a pretty good week. I kept myself really busy with work and other things, and that really helped keep me positive and hopeful. I also felt like I was getting a little bigger, so that made me even more hopeful that Brady is growing. It was weird, sometimes I would just feel really full or stretch in my abdomen, like I could feel him pushing on me to make room for him. I still don't know if I have felt his movements or not, but occasionally I do feel some muscle twitching in that area. I'd like to think that it's him, but I just don't know for certain.

On Friday afternoon, the woman from the UNC Center for Maternal and Infant Health (Lisa) called me. She told me about all the things they are going to do for us. She said that if Brady doesn't make it, we can plan for mementos, pictures, handprints/footprints, and other special things to make the day of his birth more special. She suggested we buy a couple of special outfits and bring them to th hospital to take pictures in them. She also said that they have a professional photographer that will take pictures for free for babies that aren't going to make it long. The company is called "Now I Lay Me Down To Sleep". After hearing all this, I felt so relieved that they understood what we want and will take care of us. I feel so fortunate that we found this group to work with. She also said that their chaplain (Daryl) will be able to help us figure out burial arrangements, so that we can have that planned ahead of time, in case Brady doesn't make it.

She set up an OB appointment for me for August 11th. At that time, we will be able to register with the hospital and we will be given a primary OB that we will meet with every time, so that he/she can get to know us and take care of us. After that appointment, she said that we can tour the hospital. I mentioned that I'd like to meet with Daryl as soon as possible because Brady could go at any time, so she is going to try to get us an appointment to meet with him after the OB appointment as well. At one point, she said something like "if Brady doesn't have a heartbeat at the OB appointment...". It didn't seem to affect me much during the conversation, but it's something that has haunted me since.

She said that at later OB appointments, she can set up appointments for us to meet with the neonatologist, pediatrician, labor and delivery nurses, pediatric cardiologist, and pediatric neurosurgeon. I was really glad to hear that she had thought of all those people that we need to meet with and will help set up those appointments.

After the phone call, I was feeling very good about the situation. I feel like we are in very good hands and will be taken care of well.

Friday night before bed though, I started having negative thoughts. For some reason, I just started wondering if Brady is going to have a heartbeat at our next OB appointment and thinking that he might not. I started to cry some, but had to stop myself to go to sleep. These are the first negative thoughts I have had in a week, and they were devastating. I don't want to feel this way, so I hoped that I would feel better the next day. Last night, I started having the same thoughts but earlier in the night this time. I started talking about them with Paul and he tried to comfort me. He then read to Brady, and that lifted my spirits some, but again before bed, I started to think negative thoughts again and started crying again.

And as I'm writing this blog entry, I'm crying too. I knew I would have bad moments mixed in with the good, but since Friday night, they seem to be getting worse and more frequent. I'm just so afraid that something has gone wrong already. The worst part is not knowing. If I knew he was okay, then of course I would continue to feel hopeful and positive. If I knew he was gone, then I could begin to grieve. This limbo is really hard, so today we're going to look into getting a heartbeat monitor (like the one the OB uses to find Brady's heartbeat), so that I can check on him every morning. That will help me to get through these days between OB appointments, especially since I haven't felt him move yet, so I can't tell when he has stopped moving.

I continue to pray that God will help us get through this and be here for us. I don't know what God's plan is for Brady, so I pray that he will be with us eventually, but if that's not in God's plan, then it's not going to happen. So what I need to pray for the most is the strength to get through whatever does happen, whether it be Brady's death or caring for him after his birth. Both are going to require a lot of strength, so that's what I pray for the most.

Sometimes, it doesn't feel like this is really happening. I'm just going through the motions of planning and I try not to think about what could happen, so that I don't fall apart. I know it's a coping mechanism, but at least it's productive. And sometimes, I can't believe this is happening. After all we went through to get pregnant, now we have a good chance of losing him, yet we have no idea when or if it will happen. The ambiguity of the situation is probably the worst, but I just don't want to give him up. Partly for selfish reasons, because I want to keep my baby, but partly because I want him to have life, for himself.

I better stop here. I need to try to stop thinking about this, so that I can go on with life today. Otherwise, I'll cry all day :) Please pray for us and Brady. We need it. Thank you for your love and support. We really appreciate all the emails, texts, phone calls, cards, and other offers of support. It means more than you know.