The Countdown Begins

After spending 2 1/2 weeks in the hospital, we were finally released. It seemed that every time we got close to being released, our little guy would make things exciting again. I have been a little nervous being at home, but luckily this child is very active, so I know he is doing just fine in there. The doctor told me upon being released to make sure I do kick counts twice a day. I should feel him 6 times in an hour twice a day. He said to monitor this at times he is most active. For most babies this is right after eating. For me, he seems to be the most active right before I eat. He tends to go into a food coma after I eat. He is doing lots of twisting and turning which makes for some comedy as we sit and stare at my stomach as this wave rumbles across. Not to mention that my stomach remains lopsided most of the time because he hags out on one side of my stomach.

While in the hospital, we celebrated Trey's "un-official" Father's Day. Trey wasn't expecting any kind of gift especially since I had already been in the hospital for a while. Little did he know, I had purchased his gift back in March or April and had been saving it. One of the nights, he stayed with me I had my sister go to my house and get his gift and bring it to me on one of the nights she stayed with me. The look on his face was priceless. I bought him a Clay Matthews jersey that he had been wanting for a while. What made it even better was that I was able to buy a onesie size version. Now father and son will have matching jerseys for football Sunday. It's way too cute. To be honest, I didn't want to be left out and had to buy myself one as well. Now we can be a family of Clay Matthews' fans.

 

Like Father; Like Son

I had my doctor appointments today and overall things went well. His heart rate was good, his movement was good and things looked normal with me. I am 37 weeks now and our goal has been 39 weeks. We are scheduled to be induced on Monday July 8th if nothing changes before that point. The more I sit down and think about things the more my heart starts to race. I am realizing exactly how soon that will be here. This will be my last complete weekend at home (I am scheduled to check in Sunday the 7th), and all I really have is next week. I know time is going to just fly by. I have the normal first time mother anxiety over delivery and not knowing what to expect. At this point, my doctor is shooting for a natural delivery, but has made it very clear that if there is any sign of distress we go straight to the operating room for a c-section. I am ok doing whatever will get him here safely.

My real anxiety rests with everything after the delivery. The fear of the unkown. What I do know is that there will be a team of NICU doctors in the delivery room to assess him immediately after he is born. Depending on how he is doing determines if I will get to hold him before he is shuffled away. I know that after delivery he will be taken to the CVICU (Cardiovascular Intensive Care Unit) and Trey will get to go with him. There he will be assessed and within hours they will start examining his heart for a course of action. I keep mentally trying to prepare myself for the idea that he will be taken away and I don't know how long it will be before I am able to be by his side and touch and hold him. If I end up in a c-section I know this time frame will be extended. Trey will have the ability to Skype me the entire time he is with him, so I will have some sort of connection to what is going on with him. As I have said all along, I don't care what happens I just want him to be okay.

I am so excited to meet our little guy, but that excitement tends to get overshadowed with fear. It is at this point that our journey truly begins. Throughout this entire pregnancy we have put so much faith and trust in God and it's this connection that provides me with comfort. God has brought us this far and I know He will see us through our journey.

Center of Attention!

Things with Baby Bish have gotten exciting again! Tuesday I was scheduled for an ultrasound, non-stress test and OB appointment. I went for my ultrasound and baby looked great. He was wiggling, heart rate was good, there wasn't any fluid in his chest like before and he had grown. He was still measuring about 3 weeks off, but as long as he's growing we are good. I left the ultrasound and went down the hall for my non-stress test. Here they hook me up to monitors and listen to the heart rate, monitor contractions and document his movement. I had been there about 20 minutes and the nurse came in and had me roll to the side because he seemed to be sleeping. About 5 or 10 minutes later 2 nurses rushed in and started messing with his monitor. His heart rate had dipped for about a minute without correcting itself. Once he stabilized they called in a dr and after talking to my OB thy decided to send me for additional monitoring. I was on the monitor for another couple of hours and though his heart rate seemed stable they decided they were going to keep me overnight for monitoring. It was a rather uneventful night, but about lunch time on Wednesday Trey and I were sitting around and about 6 nurses rushed into the room.  They were turning me on my side, re-positioning me and putting me on oxygen to get his heart rate back up. They finally got things where they needed to be. Pretty scary. When my OB came by for rounds that evening he said they were going to keep me on continuous monitoring and wanted him to go 48 hours without a dip. Long story short we seem to be having dips every 12-18 hours. I had another echo of the heart today and overall things looked good there. No new issues and the heart was functioning normal. It's not a change in the heart that is causing the dip in hs heart rate. So at this point we are still supposed to go 48 hours so I will be on constant monitoring through the weekend. At this point I would rather just stay on the monitor the rest of the pregnency. There is no telling when his heart rate could dip and not come back up and if that happens at home when I'm not on a monitor it could be really bad. So being confined to the bed hooked up to monitors is where I will stay at this point. We are hoping and praying we can keep him in here as long as possible. The cardiologist is hoping we make it to 37 weeks (I'm 35 weeks tomorrow)to try a decrease respitory complications. Other than these sparatic dips, he is doing great. The doctors and nurses says he looks to be doing beautifully and is fine overall. So as always we are still asking for prayers for our little guy. We have a few more weeks on this part of the journey and once he's here it will be a whole new ball game.

Pursuit of Happiness

It is no secret that this hasn’t been the easiest of pregnancies. It has been filled with lots of anxiety, uncertainty and tears. Though physically I feel like it has been the easiest pregnancy ever (not that I have anything to compare it to), but emotionally and mentally it has been the craziest roller coaster ride. Recently, two very special ladies have given me some very special pregnancy memories that at the beginning of this journey I didn’t know if I would get to have.

First, our good family friend Heather, who grew up with us more like a sister, came into town to take some maternity pictures in-between taking finals and graduating from A&M with her nursing degree (If you listen real close, you can hear that whooping sound those Aggies like to make so bad).  It was a chance to be able to settle back and have some fun with the pregnancy and enjoy it. The pictures turned out beautiful and created a wonderful set of memories for us to look back on and remember the joy that this pregnancy has brought. Thank you Heather for this most special gift.

A few of my favorite

Secondly, my sister Stacy threw me an amazing baby shower. Back at the beginning when we were diagnosed with the Cystic Hygroma, I told her I didn’t want a baby shower because of all the uncertainties.  As the pregnancy progressed, things started to change. We were able to rule out genetic defects which was a huge hurdle and the Cystic Hygroma started to decrease (there isn’t anything there to measure anymore)! Though we are looking at quite a few issues with the heart and basically looking at heart reconstruction at this point, the Dr.s still seem hopeful that though it will be a long journey, it can be a successful one. We went and registered at Babies R US which was a little overwhelming. We don’t know exactly what we are looking at in terms of a hospital stay to know what size diapers to wear and what size clothes we will need, but overall it was fun to get to pick out some of the bigger items we know we will need. My shower was held this past Saturday and it was beautiful. There was green and yellow everywhere which are the colors of our nursery (and coincidently the colors of the Greenbay Packers).  We had a great turnout of family and friends and we received some really great gifts. It’s no secret this is going to be one spoiled little boy. It was a really pleasant day. I was worried leading up to it that I was going to be overwhelmed and emotional the whole time, but I wasn’t. It was a wonderful day full of happiness and joy. The topic of the day didn’t rest on complications or surgeries, but rather how big my belly has gotten. The whole day was another great way for me to sit back and enjoy my pregnancy. Thank you Stacy for an amazing shower full of so much love and excitement.

Both of these events have brought me so much joy and has made me even more excited for our little guy to get here. Thank you again ladies!

Crazy Couple of Days

This has been a whirlwind of a week, and it’s only Wednesday! Monday afternoon I had an appointment for a “basic” ultrasound to check his measurements and overall status of our baby. His measurements are still small, but he is still growing which was good news. The sonographer went to measure his Cystic Hygroma and she said there really wasn’t anything to measure there anymore! Yes! One thing to check off the list. When the Dr. came in to do his part of the ultrasound he was concerned at a new finding of fluid around the lungs. He confirmed and said that though it was a small amount of fluid it will still concerning because with all his heart troubles, this can be a sign of heart failure. He sent me down to Texas Children’s Hospital to have me admitted for observation and to start steroid shots for lung development. The steroid shots are intended for babies who are born prematurely because it helps mature the lungs to reduce the complications once they are born. If they examined his heart and found that it was in fact in great danger of failing they would need to deliver and the steroids would help decrease lung issues. This was really nerve racking and scary. We know that our baby needs to be in there as long as possible for his overall development, but primarily his brain development. Also, we don’t want to add on the complications of being premature with the complications he is already facing. They started me on the steroid shots late Monday night (you do 2 shorts 24 hours a part) and hooked me up to a monitor to check his heart rate. His heart rate was staying steady and they were going to be scheduling me an echo of the heart in the morning.

Needless to say I didn’t sleep very well, if at all, and anxiously awaited my echo appointment. They were able to fit me in at 9 in the morning on Tuesday with one of their fetal cardiologist (not the one I normally see). I was on the table for about 2 hours which isn’t much fun. Those tables aren’t very comfortable and I never know what they are looking at while they are actually doing the ultrasound. The Dr. completed the ultrasound, but said her next patient was there and waiting, so she would come to my room later for the consultation of the findings. More waiting. So much rested on these results and so it was very difficult to sit in a hospital room and just wait. Her day ended up getting very complicated and she was not able to get to me until 5 or 6 that evening. For the most part she had good news. She did not see any changes in his heart condition which was good. The one valve that they have never been able to find that slows down the flow of blood into the heart still wasn’t there, but the effects of it not being there were starting to be seen. She said it is common for those effects to show up about this stage in the pregnancy. She said that she only found a little fluid around one of the lungs (the original ultrasound showed it around both) and that our plan was still in place to keep him in there as long as possible. Sigh of relief.

I next had to wait for my OB to come by. He showed up shortly after and the cardiologist, but her report had not been finalized to where he could access it and review the results himself. We told him basically what we had been told and he re-assured us that they were going to keep him in there as long as possible. They were not going to panic and go to delivery just because they saw something that made them nervous. The only way they will take him out early is if his status greatly changes and his life is in danger if they don’t intervene. I felt so much better after talking to both these Drs. Because my second shot was scheduled for later that night and he didn’t have the report from the echo to review, we had to stay another night. At this point though, I was told I could lose the hospital gown and wear regular cloths. I have never been so excited to get to put underwear on in my life!

Wednesday was pretty uneventful. We basically had to wait for my OB to come by and see me and give me the game plan from here on out. He was able to finally come by around 3 to talk about everything. It looks like we will be adding more appointments to monitor his condition a little more closely. I will have 2 ultrasounds a week from here on out as well as a stress test some at the med center and some locally. I know I will have another echo scheduled next week, but do not know for sure the frequency that those will take place. These appointments won’t be so bad once school is out and I am not trying to coordinate things around work. At this point, I am really not given a say as to when these appointments are scheduled I just hope it doesn’t require me to miss too much school. Luckily, I work with amazingly supportive people and my students have been very supportive and cooperative as well.

Also, I have to give a big shout out to my sister. She came to the hospital and stayed the night with me Monday night, stayed with me all day Tuesday, left to go to her son’s baseball game, came back to stay the night with me Tuesday after the game and left for work from the hospital on Wednesday. I am so lucky to have her. Trey’s work schedule has been crazy this week, but he came and worked from the hospital each evening. With all the appointments we have had he is quickly running out of vacation days so we are trying to save his days as much as possible for when the baby actually makes his arrival. He is an amazing husband doing everything thing he can for me and our child.

With all this being said, please continue to pray for our little guy. Pray that he continues to grow, that his heart does not show further signs of complications and that he is able to stay in my belly as long as possible. I am always praying for the miracle that his heart condition improves and he has an easier treatment plan and recovery once he is here. As of right now, he is looking at the more complicated route of treatment where they basically reconstruct his heart. They will use things that are there to make things that aren’t there and he will not have a typical heart with all the same structures as everyone else. He would be looking at a much longer stay in the hospital of about 3-4 months. I have said all along, I don’t care what they have to do; I just want him to be ok. We are so blessed to have so many people praying for him and supporting us through all this. Words could not begin to be able to express our gratitude to everyone.

Here are the 3D pictures we were able to get at our ultrasound- 31 weeks

Hello Third Trimester

Entering the third trimester has really brought a wave of excitement and sense of reality that things are getting close. We have increased our number of doctor appointments to the point where I am in some kind of office every week (if not multiple offices).

At our last ultrasound we got some new information. We found out that the baby has a dilated kidney. It really looks quite large compared to the other one. They told us that when the baby is born they will do a couple of tests to see why the kidney is dilated and determine from there how they will need to proceed. The problem can either be fixed with antibiotics or might require surgery.

All along the baby has measured about a week behind. As of the last ultrasound, he is now measuring about 2 weeks off. The good thing is that we have already ruled out chromosomal abnormalities with the amnio we did a few months ago. The issue could be tied to one of his complications or it could just mean that he will be on the small side. The big thing we need to do at this point is monitor to make sure he is still growing.  It’s ok if he grows a little slower, but if he stops completely that is a problem.  They won’t check his measurements for another 2 weeks, so we have to keep praying that he grows.

They continue to measure his cystic hygroma. They don’t even mention it anymore which is a good sign. I usually forget to ask about it because I get so side tracked with everything else, but I make a point while they are doing the ultrasound to look at the measurement. It is still continuing to decrease in size which is awesome. I am hoping that it completely goes away by the time he is born so we can cross that off our to-do list.

They have started monitoring his lungs (maybe they have all along, but we have talked about it at his last 2 appointments). During the ultrasound they watch his diaphragm to make sure it inflates once in a 30 minute period. This shows that the lungs are functioning and practicing for life on the outside. At this last ultrasound they were having trouble getting the shot they needed. They had me rotate a couple of different ways and they had this sound zapper that didn’t phase him at all. We had about 4 minutes to go and I was getting really nervous. Finally in that last moment, they saw the diaphragm inflate. Talk about a sigh of relief. Seems like he is a bit of a procrastinator like his Daddy. I don’t know what that would have meant for us at this point, but glad that was one less thing to worry about right now.

The doctor has told me to monitor his movements and make sure I feel him at least 10 times in 2 hours. This normally is not an issue for him. We know all along how much he likes to move and dance around in there, but there is just a little added stress to know I have to keep such a close eye and count. Normally I can sit down and count 10 kicks in a matter of 15 minutes. I will continue with these ultrasounds every week until he is born to monitor his growth and make sure organs are functioning properly.

I also had my first appointment with my new OB at Texas Children’s. Trey and I both really liked him. He gave us a lot of good information and made us feel really comfortable. He said that he usually likes to induce his patients at 39 weeks, so that things can be as organized and planned as possible which I am completely ok with. My OB appointments at this point are going to be every two weeks. On a side note, my new OB reminds me of Steve Carell. When I look at him that’s all I seem to focus on; my baby is going to be delivered by the 40 year-old virgin. It kinda makes for a less stressful appointment in my head.

I go back for my echo of the heart on Monday. I don’t know for sure how often we will be going for those, but I only have a month left of school and then I won’t be as concerned about appointments because I won’t have to worry about scheduling them around work. My schedule of appointments sounds a bit stressful, but at the same time they make me a little excited. I like that I get to check on him every week now and it makes me excited to know that all these appointments means he is that much closer to being here. With the excitement come the nerves. I am excited that he is so close to being here, but very nervous because at the same time, once he is here it is go time. That’s when everything starts happening and decisions about care really start being made and surgeries and treatments begin.

We continue to pray for his protection and healing. God has brought us so far with our little one and we know that he will continue to guide us through this process. Please continue to keep Baby Bish in your prayers. They have done so much for us thus far and continue to provide us a tremendous amount of comfort.

Baby Bish at 28 weeks

Doctor Who?

These last few weeks have been packed with doctor’s appointments, so I have waited for them to slow down before providing an update.

Doctor appointment 1: Ultrasound

We had a “routine” ultrasound appointment with Texas Children’s. I say “routine” because for most women they don’t do as many ultrasounds as we have, but this was just an appointment to check on baby and look at some measurements. I have considered the frequent ultrasounds somewhat of a blessing. It has been wonderful to get to check on our little guy so often and get to watch him on the screen. It has also provided a little peace of mind throughout the process. The first thing I look for is that flicker of a heartbeat and when I see it I am able to relax for the rest of the appointment. A friend of ours is letting us use their fetal Doppler and I have been able to check baby’s heartbeat whenever I want. I use it every day, sometimes twice a day, and it’s nice because that’s my little moment with him. I typically will check his heartbeat for myself before all doctor appointments. Anyways, the ultrasound went well. He is still growing though his measurements are about a week off. The doctor said they don’t consider that to be an issue until his measurements become more than 2 weeks off, so that is good. We discussed the fact that our amnio results came back clear! Meaning we aren’t looking at a genetic defect as the cause of any of this. That was a huge hurdle to cross and gives us a better outcome. The Cystic Hygroma is not growing and there is an indicator it might still be getting smaller. Our last appointment measured the CH in the 12^th percentile, this time it was in the 9^th. They said this could be part of the bell curve meaning an area of fluctuation in measurements, but still it isn’t growing. Overall a positive appointment and I am scheduled to go back in 4 weeks.

Doctor appointment 2: OB

I went in for a regular OB appointment to check on me. My vitals were good and no issues seemed to arise on that end. My doctor said she feels like such a kindergartner compared to everything Texas Children’s is doing for me. We discussed the realization that we will be needing to transfer my care completely over to Texas Children’s based on the results of the previous cardio appointment and the care the baby would need.  We went ahead and scheduled my glucose tolerance test and were going to start on 2 week appointments until I had to transfer. She had a long talk with me and answered questions I had about some of the issues we were facing and assured me we were in good hands with Texas Children’s (something I have never doubted). 

Doctor appointment 3: Cardio

Our little guy was much more cooperative this time and in a better position than last time. The doctor was able to get much better images and resulted in me only being on the table an hour to hour and a half. These ultrasounds aren’t as exciting to watch because they are only looking at the heart and I have no idea what I am looking at when they take all their images. At one point the dr. brought in a colleague of hers to take a look. It was awesome to hear them going back and forth talking about what they saw. It was a bunch of medical talk and I had no idea what any of it meant, but it reassured me that we were in good hands and these people were freakin geniuses. After the ultrasound we sat down in a conference room for our consultation to go over the images and discuss the findings. Nothing really changed from last time other than the images were better this time and rather than guessing at what she was looking at she knew.  She starts by drawing a detailed version of a normal heart and then goes through how our baby’s heart is different. There is a valve that slows down the blood flow coming from me into the baby that she has not been able to locate. This is what she brought her colleague in to look for as well. Normally when this valve is not there you see a gush of blood flow coming into baby that can cause complications. The good news is she doesn’t see that rush of blood flow. This could mean the valve is there, but either small or hidden or something else. She wasn’t overly concerned with this since it still seemed to doing what it needed to be doing. There is a different valve in the heart that is very leaky. This can cause fluid buildup around the heart and extra stress on the baby. The good news is though it is very leaky there are no signs of stress on the baby. He still has a large hole in the bottom chamber of the heart, but the good news is he at least has 2 bottom chambers. His aorta is the other big issues. The aorta valve that the blood goes through to get into the aorta is small. The blood is having difficulty getting into the aorta which has resulted in a smaller aorta in general. This is where all the focus and attention will be when he is here. It isn’t too dangerous for this to be the condition at this point because he is getting everything he needs from me. It becomes a major concern after he is born and his heart is supposed to be pumping blood to his entire body. She proceeded to go through all the different possible surgical options for repairing this issue. This is when things get overwhelming. It could be something  as “simple” (there isn’t anything simple about open heart surgery) as one or two surgeries to fix the blood flow into the aorta and then stretch the aorta to make it larger to complete heart reconstruction where they start moving things around and making pieces out of other parts. Completely crazy to try and process. He could be looking at anything from 2 ½ weeks in the hospital to 3-4 months in the hospital. The hard thing for me to process is we won’t know exactly what route is going to be needed until he is here and gets evaluated and they know exactly what they are working with. That isn’t easy to hear for someone who is super organized and likes to be prepared and on top of things. It was decided at this point that I would be transferring my care completely to Texas Children’s and there is no reason to postpone that. I go back in 4 weeks for another echo and at that point should be all transferred over and will possibly have the OB appointment. We might even be taking our tour of the hospital and getting a little more information on what we can expect during our time there. So, we can be somewhat prepared for what we are expecting.

I have had a really hard time processing all this lately. I have focused so much on getting through the pregnancy and to delivery. I no longer am hearing the phrase “IF you make it to delivery” which has been nice, but all these doctor’s appointments have made me realize it is at that point that the journey will start. We have such a battle and long journey after that point. All I keep saying is I want my baby to be ok. That’s all I have ever wanted. I don’t want him to have to go through any of this and I feel completely helpless. There isn’t anything I can do to help and fix this for him and it breaks my heart. I try not to dwell on some of the joys we have been missing out on. Our pregnancy has been filled with a lot of stress and scary moments and I know once he is here, I won’t care about anything I might feel like I have missed out on. Just the thought of a baby shower is stressful. What do I plan for? I have no idea when I will get to bring him home. I have no idea if we will be selling our house and moving in with my parents to get through things?  Will I have a nursery to decorate and prepare? Do I make sure I stock up on newborn diapers or will we be in the hospital through that whole phase? Same thing with cloths, do I plan on having newborn cloths or should I focus on 3-6 month cloths? These things seem so stupid to worry about now that I put it on paper, but it’s hard not being able to see the big picture and figure out the little details. I know these things aren’t the important things that matter at this point, but it all just adds to all the uncertainty.   

I pray that God continues to protect our baby. He has come so far and God has done so much for him already. I pray for the doctor’s and their expertise. I pray that everyone has the knowledge to make the best decisions for him. I pray for peace and comfort for Trey and I and our family friends as we all go through this journey together. I have put this entire process in God’s hands and I continue to seek comfort in that. When I feel myself getting overwhelmed I try to remind myself of this and that He is walking us through this journey. We have had so many amazing people praying for us through this process and are eternally grateful. We ask that people keep the prayers coming. Depending on the day, I usually have one of our church songs playing in my head. It’s random every day and I think God puts the song there for a reason. Today the song has been, “I will not be afraid. You are stronger. You are faithful.” I do find comfort in these words and I know we will get through this.

Cardio

We finally had our appointment to check on our little guy’s heart. We knew we were looking at a heart defect, but didn’t know exactly what was going on with it. Our little guy was moving all over the place and literally never stopped moving. The doctor was so surprised at how much he actually moves. It was cute and funny for a while, but it caused the ultrasound to go twice as long. We were doing the ultrasound for a solid two hours, so they could try and get all the images they needed. Every time they would go to capture the image, he would jump in a different direction.  The doctor finally ended the ultrasound and we sat down to discuss all the results. She saw two major complications that will need to be addressed. I can’t even begin to fully explain what we are looking at, but the cliff notes version of it all is that he has a hole in the bottom chambers and his aorta is small. She was still a little unclear on the full picture because he wouldn’t sit still for the ultrasound and she was unable to get a clear look at things. She was able to give us a slight game plan at what we are looking at treatment wise once he is born. I don’t want to dwell on that too much at this point since things are still a little unclear. We left the appointment feeling very overwhelmed. There was a lot of information thrown at us and it took some time to process.

We have an appointment in 3 weeks for a follow up where she is going to take another look and hopefully come up with a firm diagnosis. Hopefully he will cooperate and sit still a little better. Eventually we will meet with the surgeons and get their perspective and game plan on surgeries and have an even more clear picture on what we are going to be looking at once he is here. It’s scary. For so long we have focused solely on the threat of the cystic hygroma. At our last appointment, we found out that the CH had gone from a 3.6 to a 2.1 and looked to be resolving! Our new hurdle is his heart. I pray that his heart continues to grow and that his complications heal or at least get better. God has been hearing and answering our prayers so far and I pray that he continues to protect and heal our baby.