We just can't catch a break

We went back to the OB this morning, for another Biophysical Profile. After Tuesday's appointment, and my AFI being up in the 11's, I was feeling good about today's appointment, thinking all would be just fine.

Turns out, I was wrong. My AFI has plummeted down to a 6.9 or so. According to my OB, this is still a tolerable level, but we don't have much room to spare. If we get down into the 5's, she said she is going to hospitalize me, for IV fluids and pool treatments multiple times per day. Worst case scenario, if my AFI were to drop down into the 3's or lower, she would be forced to deliver Wyatt, as remaining in utero would be unsafe for him. She said even though we need to keep him in there as long as possible so he can grow and develop, and have time for lung development, it would be more risky to leave him in at that point than it would be to take him out.

The implications of this scenario are absolutely HUGE all around:

a) Of course, the bigger and strong Wyatt is at birth, the better he is expected to tolerate the Norwood procedure after birth. So the earlier he comes, the more at risk he is for breathing problems and complications before, during, and after surgery.

b) My one year anniversary at my job isn't until October 3rd. That means that until October 3rd, they are not required to give me an FMLA leave (the modern day 'maternity' leave). If I can't take an FMLA leave, that means my employer is no longer providing me with health insurance, and it means that I cannot claim short term disability, which provides 60% of my income for a short term period. This can mean that we could have MUCH higher medical bills for Wyatt's delivery and for my hospital stay, and that we will completely lose my income much sooner than we'd like. (Obviously, we would like to not lose my income at all). If I can't stay out of the hospital for at least another 2 weeks, all of this will happen.

c) I feel like it is my sole responsibility to make this situation better. Like there is something I can do that will fix it, plain and simple. But, there isn't. The only thing I can do is sit on the couch, and do nothing, and make sure I am drinking crap tons of water. All the while, stressing about something I can't control.

We thought I had finally made some improvements with my AFI, and now I feel like we are even more defeated. My current AFI is even lower than we've ever seen it, despite the fact that other than working at my desk job, I sit on the couch, or lay in the bath reading. It is Labor Day weekend, and I will be spending the entire weekend on my couch, doing next to nothing, trying to make my AFI better. I think this might be the first time I've ever been a bit sad about having a 3 day weekend. 

My OB has been semi - optimistic that Wyatt would turn, and position himself head down so he could be born vaginally. After seeing how low my AFI was today, she said she has lost all confidence that he will turn. DJ and I both have pretty much come to terms with the fact that Wyatt will be born via C-Section, and neither of us felt like he would turn. So, we aren't super disappointed with this fact.  

This weekend, I am going to have DJ pack hospital bags, both for us, and for Austyn. That way, we have a bag that is ready to take to the hospital, and Austyn has a bag that is ready for him to take to Grandma's or Grandpa's. I am not sure what else I can do to prepare us, and I really don't think there is anything else. We are beginning to reach the starting line of this 'adventure' and the closer we get to it, the more terrified I am.

Every day, I hope with every ounce of my being, that all the doctors have been wrong. That there is nothing wrong with Wyatt. That he will be born, and they will check his heart, and it will be totally fine. That we will spend our few days in the hospital, and then we will all come home, to be a happy family of 4, just like we were supposed to. And every part of me knows that this is an impossible situation, yet, I cling to it. The closer Wyatt's birth gets, the more real the entire situation becomes. I have learned I don't like real. I don't like terrifying. I have been pretty okay for the past month, maybe even two. But as the time gets closer, I can feel myself slipping. It won't be long before we are not even close to okay. And there is nothing we can do to change that. 

An uplifting day

The past week or so has been fairly rough. Since Austyn has returned to school, starting the 1st grade last week, he has been one little stinker at home. Everything has been a bit on edge, he has been very argumentative, homework has been a fight, he has been defiant...the works. And it has been absolutely exhausting. I know that this is a phase, and is most likely related to the fact that he just started back at school, but while it lasts, it's been tiresome. 

Then we had our rough appointment at the OB last Friday, instilling more fear into us. Top that off with some work stress; DJ was working lots of overtime last week, in preparation for the big wigs to come through, and we have been having lots of technical difficulties in my office that I have to fix, making for long days. Nothing alone has been terrible really, it's just been the combination of everything that has been so very overwhelming.

Last night and tonight, Austyn has been better. Homework hasn't been nearly as much of a fight (I think after we've told him 100 times that if he would actually try, it wouldn't be nearly as bad, and wouldn't take long at all because he is smart and he can do it, he has finally figured out that applying himself to the homework is easier than farting around and whining for an hour pretending he doesn't know how.) He hasn't been as argumentative, and I think that he isn't quite as tired. I knew going into first grade that it would take him a while to adjust to being in school all day rather than just the half day he had in Kindergarten. It has been a lovely reprieve from fighting with him consistently, and feeling like all we do is yell at him. Even though it's only been a little over a week of this change in behavior - I have so much missed the fun, smiling, laughter filled evenings with my little boy. 

After last week's appointment, we now approach each appointment with the knowledge that my AFI could be lower, or something could be up with Wyatt's heartbeat, and that we may find ourselves in the hospital before we know it. This is how I went into today's appointment, just hoping that my AFI hadn't gone down, and hoping to stay out of the Labor and Delivery unit for now. 

Our non-stress test went perfectly! Our NP said that the results were "perfect" and that everything looked beautiful. She was extremely happy with Wyatt's movement. He was very, very active while we were on the monitor, and she loved that. We told her that our biggest concern was my AFI, because we had been following that so closely for the past couple of months. So, we checked it, just for our comfort mainly. Wyatt looked great, and our fluid levels were UP to a 11.7, which is over 2 cm higher than it has been in months! I was ecstatic. This was better news that I had even imagined hearing.

It was uplifting, to see that even though we have had a few set backs (minor as they are), we can move forward as well. With only 5 weeks left until that magic 39 week mark, we are doing everything we can to make sure Wyatt stays in there and grows. And at the same time, we are trying to keep me out of the hospital, and make sure that I can continue working as long as possible. We don't want to lose my income before we have to, especially since we already have medical bills from all the appointments we attend, and we want to stay on top of those until we absolutely can't.

Today I feel good. Today is one of those days where I feel like we can do this - even though it is going to be hard. I don't feel utterly defeated today, which is nice. I just hope that we can continue to have days like this, even if they aren't all the time, to show us that there is hope, that there is light at the end of the tunnel. 

It's getting harder

As the time gets closer and closer, my coping with all of this is getting harder and harder. When Wyatt was first diagnosed, it was an extremely large pill to swallow. It took days of me repeating to myself "My baby has a heart defect" for it to be real, for me to realize it was truly something that was affecting my life. 

Somehow, in the past 14 weeks, it has become a bit easier to deal with. Seeing doctors so regularly, talking about HLHS, the Norwood procedure, lengthy hospital stays, etc. has all become much easier. Routine even. We have had multiple people tell us "you are so calm about this". And I think that is because even though we were speaking the words, even though we were talking about it all, we weren't really acknowledging it. But now that we are only weeks away from his birth, and are worried about his deceling, and continue to worry about the fluid levels, it's unavoidable. 

It is getting hard to focus on every day things. It is getting hard to be motivated at work, to want to do simple tasks, just like at the beginning. I so wish that we were just waiting for our baby to be born, waiting to have a 2-3 day hospital stay, and then waiting to come home, like most people do. Instead, we are stressing about his birth, his health, his surgery, his hospital stay, bouncing back and forth between the hospital and home, keeping things semi-normal for Austyn, staying calm in front of Austyn, the money problems that will arise....everything. DJ has started having a hard time sleeping; most likely due to stress. I imagine that will only get worse for us both. 

This morning, I thought to myself "Ok, a full day at work today, a short day tomorrow because of the doctor's appointment, Wednesday and Thursday are full days, and then a short day Friday because of the doc appointment, and then we have a three day weekend". And then I realized, that while I am counting down the days each week until the weekend, that is also making the start of this roller coaster closer and closer.

I am absolutely, utterly terrified. I don't know what to do. I don't know what to say. I don't know how to prepare. I feel like there is something else I could be doing for my boys, and I have no idea what that is. None of this is fair. No one should have to have these feelings. Not even 1 in 10,000. It just doesn't seem right. And, there is nothing I can do about it. Nothing I can do will change the facts, nothing will make it easier, nothing will make it simpler. 

It's the normal things

It's doing the normal things, or thinking about doing normal things, that makes this all so real for me. Last night, I took a bath, read a book, and then laid on the couch and continued to read, until we went to bed, where I read for another hour before going to sleep. And I realized, my days of being able to do these things are very numbered. It was one of those weeks where I just really wanted to go have a Best Friend night, go out with my best friend, sit on a patio at some restaurant, and have a few beers and chat. Unwind, relax, and just be me. Of course, the beers are not an option at this point (but, while we are on the topic, what I wouldn't do to have an ice cold beer right about now lol). But, moreso, I realized that being able to do such a thing is not in my near future. I do not see myself being comfortable enough to leave Wyatt at home to go out and drink a few beers. While I don't necessarily think there is anything wrong with the idea, I just know myself and know that I most likely won't feel comfortable.

All these things that I used to do for fun, to relax, whatever, are going to become a thing of the past. My thoughts and time will be consumed with Wyatt and his health, his needs, how he's doing, etc. and with Austyn, and how he's coping, and feeling, and doing. I have said many times that many of my freedoms went away when Austyn was born. And the remainder of them is about to go, too. Especially at first, while we are still adjusting to being heart parents, still learning about Wyatt, and how he deals with his HLHS. It's a little sad to think about, really.

On Friday, we went to the OB for what should have been a quick sit on the fetal monitor. Instead, we ended up being at the OB's office for 2 hours, because he was deceling, and the doc was not comfortable with that. We ended up having a biophysical profile done, which she said we passed with 100%. But, she wasn't comfortable waiting an entire week to see us again, so we go back on Tuesday for another sit on the fetal monitor. She said that if we end up doing a BPP on Tuesday again, we won't schedule non-stress tests anymore, we will just always do a BPP, as they are a better indicator of how he is doing anyway. My fluid level (AFI) was a 9.59, down just a little bit from last time, and I imagine with Wyatt deceling, and the fact that we've been concerned with my AFI for about 8 weeks now, as soon as that number drops, I will either be hospitalized, or out on bed rest. It is imperative that Wyatt stay in there as long as possible, so his body and lungs can mature as much as possible before surgery. Our OB wants us to get to 39 weeks, but with Wyatt being breech, and the deceling, and the low AFI, I am not convinced we are going to make it to 39. I am thinking that 38 is a more reasonable goal for us. So we will see how that all plays out.

There for a while, going to the doctor wasn't so bad. We were always having good appointments, Wyatt was always doing well, and we didn't really stress about upcoming appointments. Now we are back to the dread before each appointment. Back to wondering what they are going to say, what is going to be wrong this time, and now wondering when we will be sent to the hospital. I told DJ we need to mentally prepare to go at anytime, because they may want me on IV fluids at any given moment. 

All the changes are starting to come, and it seems like it's all at once. And I am sure that will increase 10-fold when Wyatt is actually born. I will be 34 weeks on Tuesday, meaning we have 5 weeks maximum left, before life and its craziness hits, full swing. I just hope we're ready.

Alright, lets do this

We have known about Wyatt's HLHS for almost 13 weeks now. That means we have spent the past 13 weeks thinking about it, stressing about it, wondering what it is going to be like, wondering how we are going to cope, hurting, and fearing. And let me tell you, 13 weeks is a long time to have been doing all that every single day. I feel like having an HLHS baby is not something you can really plan for. You can try to set things in motion, you can try to imagine how you might feel, you can try to have back up plans for the "regular" parts of your life. But that's it. We don't know how things are going to go; we only know how we would like them to go. We don't know how we are going to feel; we only know it is going to be really hard. We don't know what kind of help and support we are going to need to keep daily life running; we only can think of select things.

We are now at this point where we feel like we are ready for it to all start. We just want to start living it, and see how all these things are going to play out, rather than stressing and worrying about it all the time. We are ready to meet our son, kiss him, love him, and help him through this. We are ready to stop talking and start living. But, we of course have no control over that, and in actuality don't want Wyatt to come yet, as he would be premature and that would be terrible in conjunction with his CHD. 

We saw the OB on Friday, and she said that Wyatt is doing really well. He is growing like a weed, measuring about a week ahead all around for growth. He is currently weighing in at 4 pounds, 11 ounces. He should most likely gain another 3.5 - 4 pounds in the next 6 weeks, which would bring him to 8 - 9 pounds at birth, which would be great! He is still breech. For at least the past month or so, he has been sitting with his head just under my right breast, his butt in my pelvis, and his feet and hands up under my left breast. This seems to be his comfy spot, and he doesn't want to move. During our ultrasound he was playing with his feet, which was adorable. The ultrasound tech says he has hair too! We will continue to see our OB weekly from here on out, and at the 36 week mark, which is the second week of September, our OB said she is going to schedule us. We will be scheduled for a C-Section if he is still breech at that point, and we will be scheduled for an induction if he has turned by then. She said the likelihood of his turning after 36 weeks is very small, but if he did, we would just switch the procedure we are scheduled for.

I had Austyn via vaginal delivery, and have been anticipating a very hard, very fast labor with Wyatt, as I was only in labor with Austyn for 5 hours from start to finish, and I only pushed twice. Now, I have to re-prepare myself for the real possibility that I could be having Wyatt via C-Section. The C-Section itself doesn't worry me, but the recovery does. The OB said that if I was to deliver in the morning, I MIGHT be sitting up on the edge of my bed by that evening. What?! I want to be able to hop out of the bed, and go down to the NICU so I can be with Wyatt and DJ. I don't want to be stuck recovering in a post-op room, unable to go anywhere. So, that's a bummer. Obviously, there isn't anything I can do about it, and I just have to deal, but still, not a happy idea in my brain.

We went and had maternity photos taken yesterday, which was fun. All 3 of us were in the photos, and we even talked Austyn into kissing my belly :) I am excited to see how the photos turn out after editing. I think a lot of them are going to be super cute. It was a fun way to celebrate Wyatt, and our family. I think it was also a great way to show Austyn that not every part of this pregnancy is sad, or bad. He had fun at the shoot. 

So, now we continue waiting. We wait to see our photos, and we wait to see our son. I know that 6 weeks are going to go fast, in the grand scheme of things, but right now, I feel like 6 weeks is an eternity. But, this too, shall pass.

Take a breath

This morning, I got in my car, and the "low tire pressure" light was on. I thought "well, thats annoying, guess I'll have to get air sometime". Then, I noticed it was really loud in the car, and I had to turn the music up really loud just to be able to hear it. After a couple of miles, I had concluded that the sound was coming from the rear of the car, so I moved my side view mirror, only to see my rear tire completely flat, and I was driving on my rim. I pulled over, and called DJ to come help me put the spare on. (for the record, I can change a tire, but figured at 8 months pregnant with low amniotic fluid, I should not be doing that sort of thing). After putting the spare on, I went to get a new tire put on.

At the tire place, the front counter guy was making small talk while they tried to find me a tire. He asked when I am due. I told him. He asked if it was my first baby, I told him it was my second. He asked if it was a boy or a girl, I told him it was a boy. Then the conversation went like this:

Counter guy: "oh, I bet daddy is really excited"

Me: "He is excited, but he wanted a girl, since we already have a boy"

Counter guy: "I can understand that, but all that matters is that he is healthy"

Me: "......................yep"

I had to step back and just breathe for a minute. Every ounce of me knows that if I was in his shoes, I would have said the exact same thing. I know exactly what he means. I know that there isn't a sign on my forehead that says "The baby I am carrying has a very rare congenital heart defect and he will go through more shit in the first week of his life than most of us endure throughout our entire lives". But the protective, mama bear in me wanted to scream at him that it isn't that simple, that not all babies are healthy. That my baby has a broken heart. Instead, I of course smiled politely and continued about my business. It was just a reminder that aside from our close personals, and the other heart families, parents of special needs children, etc. we are alone in this.

Back on May 22nd, when we got Wyatt's diagnosis, I eventually posted to Facebook about it. I told everyone that we were having a boy, as we also got that news that day, and then explained that he had been diagnosed with HLHS, and gave a very brief explanation. We received many positive, uplifting, supportive comments. But one person, who apparently either can't read, or didn't take the time to read my entire status, said something to the tune of "all that matters is that he is healthy". I was pissed. My best friend was pissed. DJ was pissed. That, of course, was a different situation than the one I experienced today. I wasn't pissed at the counter guy, just taken back a bit.

Again, I am finding it interesting the way this all plays into our daily lives, the way it makes me feel, the way it changes my gut reactions. And I am sure that once Wyatt is here, it will change even further, and even more drastically.

But, we ended the day well. I have been making new recipes I find on pinterest, and tonight, Austyn helped me make Taco Pie in his cute little Mario pajamas. It was one of those moments where you can't help but smile at your sweet, wanna be helpful, 6 year old.

Touring our new "home" away from home

Today was our big appointment day. At 9:30 this morning, we went for our fetal echocardiogram. The poor ultrasound tech had the hardest time getting the pictures she needed of Wyatt. Not only is he breech, but his ribs are really in the way now, AND the little dude had the hiccups. After reviewing all the data, we met with our cardiologist. He said that Wyatt's heart is right where he would like it to be, and that things are on track. His atrial septum is nice and open, as it should be, and his PDA (patent ductus arteriosus) is also nice and open, allowing for blood flow as needed. Without these two things being open, we would be in a MUCH worse situation. 

Then we met with our surgeon. He explained the anatomy of a normal heart, the anatomy of a HLHS heart, and the anatomy of Wyatt's heart. He then explained that during the Norwood (the first surgery that Wyatt will face, 3-6 days after birth), Wyatt will be put on a heart and lung machine, and they will go in and remove the "wall" of his atrial septum, to allow for maximum mixing of the "blue" blood and the "red" blood. They will also go in, and widen his aorta, which is also underdeveloped (a symptom, if you will, of HLHS). They will also insert a shunt from his right ventricle to his aorta, which will provide a restricted amount of blood to his lungs, so as not to over flow blood into his lungs. The explanation of the Norwood as given to us on paper is : "The large main pulmonary artery and small aorta are fashioned together to make a new, larger aorta. There is a small tube (shunt) put in to connect the lung artery to the aorta. This shunt gives blood flow to the lungs. The wall that separates the top two heart chambers is removed (atrial septectomy). The narrowing of the aorta is opened. The connecting blood vessel is removed."

We were able to tour our surgeon's OR - at our hospital, each surgeon designs his own OR, so everything is to his liking. It was interesting and scary to see THE room where Wyatt will have his Norwood. We also toured the NICU, and met the head neonatologist, who explained Wyatt's care during his stay in the NICU, and we toured the PICU, where we will spend recovery time after surgery. We also toured the Labor and Delivery unit, to see where Wyatt will be born, and where I will recover. 

 
In all, it was a good experience. It is nice to be able to picture the places we will be in, rather than creating a picture in our heads. It did make the entire situation really, really real, but not necessarily in a bad way. Both DJ and I feel confident in our surgeon, his outlook on HLHS, and his positivity on the situation. Neither of us are thrilled with the NICU, as it is just a scary place to be, but the PICU is much better. We will have our own room for Wyatt, and there is a bed where one of us will be able to stay the night at the hospital with Wyatt each night. We will be able to have photos, and any gifts Wyatt received, to make it a bit more "home" like while we are there. 

I can say that today I am feeling optimistic. I feel like we have a fighting chance, and I feel like we have a tremendous medical team backing us. Our surgeon has performed the Norwood procedure literally hundreds of times, and is realistic about the mortality rate and the possible complications of surgery. The NICU and PICU staff are well equipped and ready for us. I think we can do this. There is a way. 

Finally, for any other heart family out there looking simply for the information, here are some "interesting" things we learned throughout the day:
1. Our surgeon recommends we wait to have Wyatt circumcised until after the Glenn procedure. 

2. Our surgeon is mentally staging the Norwood at 3-4 days old, the Glenn at 6 months old, and the Fontan at 2-3 years old.

3. Most information on the Norwood will state that a Blalock Taussig Shunt will be used, but there is another alternative, which connects directly to the right ventricle, which allows for more stability in HLHS kids - this is the option we are going with.

4. The doctors REALLY appreciate when the parents have done their research, and are a bit more informed on everything going in. They like that we realize that transplant isn't as easy as it may seem, and that it is not necessarily the best option, and that we have taught ourselves not only about HLHS, but also about the surgeries. 

5. Even the people who work for the hospitals and doctors offices, who are supposed to "get it" don't really understand the way you feel. There are certain people involved in our care who have heart children, who are a bit more connected, but for the most part, the complete understanding you want them to have just isn't there. It is something I have grown used to.

6. The NICU is terrifying. Seeing those poor little babies and the sad looks on their parent's faces was not any fun.

7. The NICU has really strict rules, but even those can be bent. We were concerned about Austyn being able to come visit Wyatt before surgery, as we feel it is important for Austyn to meet Wyatt before he has so many tubes and things, when its not quite so scary. The neonatologist said that while more than one visit isn't likely, it can be arranged for Austyn to come see Wyatt, even in the NICU.

8. There is a way to do direct blood donation - where family and friends can go donate blood, in Wyatt's name, around the day of birth. The blood that is compatible will  be used in his surgery, and the blood that is not compatible will be given to the blood bank to be used by people who are compatible. That blood still gets Wyatt a "credit" towards blood for his surgery. The doctors and the hospital love this idea, and are super willing to help you set it up, if it something your family is interested in. We will be doing this for each of Wyatt's surgeries.  

9. Even with all the negativity, we are SO glad to have all the information we have. We feel so much more prepared and ready knowing as much as we can, even when some of it is sad, or worrisome. We are the kind of people that would rather know what we are facing, than go in blind, and are thankful we have been so open to all the information.

We have about 8 weeks left before this all begins. 8 weeks. It is going to be here so, so soon. 

30 week OB appointment

2 weeks ago, when we saw the OB, my AFI (amniotic fluid index) was pretty low, an 8 something. The doctor was concerned, as low amniotic fluid could mean pre-term labor, and told me to drink water, lots of water, and rest whenever possible. So for the past two weeks, I have been taking it easy at home, and drinking at least a gallon of water per day. 

Yesterday, my AFI was a 9 something. Not much better, unfortunately. She said that while it isn't a whole lot better, it isn't worse either, and that they were concerned that it might continue going down in a trend. So, I am supposed to keep doing what I am doing, in hopes of 3 things:
a)Keeping Wyatt in there so he can continue growing as long as possible
b)Keeping me from bed rest
c)Keeping me from being hospitalized.

They did say that if Wyatt is still breech (he has been breech the entire pregnancy), and my fluids get lower, I will be hospitalized in order to get IV fluids so the fluids are going more directly to him, rather to my stomach, in hopes of giving him more room to get turned around in. They prefer a vaginal delivery for Wyatt, as it is better for him because the fluid gets squeezed out of his lungs on his way out.

I would prefer to not have a C-Section, as I don't really want to be healing while I am trying to visit Wyatt in the NICU and deal with his first surgery. The plus side to have a C-Section though, would be that we could have my tubes tied while they are in there. Originally, we were planning on having 3 children total. It sort of depended on if I was able to be home with the kids more, or if I was going to continue being a working mom, but for the most part, I think 3 was in the future for both of us. But after we found out about Wyatt's HLHS, we talked about it, and decided that we shouldn't have any more children. Neither of us can imagine what it would feel like to go through that first 20 weeks of pregnancy, wondering if we were having another heart baby. (the doctors have said that we have a higher chance of having another with a heart defect). And we feel like it would be selfish. Poor Austyn already has to deal with this difficult pregnancy, and all the sadness and emotions that come along with it. Then, he has to deal with the birth of his little brother, who is sick. Then surgery and having Mommy and Daddy gone a lot while Wyatt is in the hospital. And not that it is something I want to think about, but he may also face the loss of his brother. To make him go through another pregnancy would be terrifying for him. I can just see the conversation now. 

Me: "Austyn, there is a baby in Mommy's tummy again"
Austyn: "Is this baby sick too?" 

Not to mention the pain, and worry it would cause us, our family, and our friends. We didn't know there could be something wrong with Wyatt when he was conceived. It wasn't something that ever crossed our minds. But, if we were to get pregnant again, we would both know what those risks were, and if there was something wrong with that baby, we would both have an overwhelming amount of guilt. The way it is now, we have two little boys to love and dote over, and we can just spoil them rotten rather than spreading out our love to one more child.

We see our cardiologist next Friday, as well as our surgeon, the NICU and PICU staff, and we are touring P/SL. It is going to be a big day for us, but I think that doing that all will really make us more prepared. Then we see the OB every Friday until the end of the pregnancy. We will start having weekly non-stress tests, to see if Wyatt's heart is fluctuating in rate like it should be, as well as of course watching his growth and my AFI. We are tentatively planning on an induction at 39 weeks, so we've really only got 8 weeks to go at this point (I'll be 31 weeks on Tuesday).

I am so excited to meet Wyatt, and to touch him, and kiss him, and hold him. And I am absolutely terrified. We have finally gotten to this point where the knowledge of Wyatt's HLHS has become normal, and here in 8 weeks we will be back at square 1. Back at trying to figure out a new normal. Back to the tears, and the pain, and the concern each and every moment of every day. I am taking a 'leave' from work, at least 6 months off, if not a year or more, to be with Wyatt, and be home with the kids when that time comes. Thankfully, DJ is taking a month off of work to be here too during that first month. I don't know what I would do if he wasn't doing that. I am definitely going to need him at that time, and I know that he too will need me. I am hoping, that together, we can handle all of this. 

Another brick wall

The past month or so, I would say that our lives have been fairly 'normal'. We seem to have found a bit of comfort, and honestly, I think we started letting ourselves believe that even though Wyatt has HLHS, he is going to have some surgery, and then everything is going to be fine. We have had our days where we get extremely scared, but for the most part, we have been pretty good.


On Monday, we learned that little baby Logan lost his battle with HLHS. He was one day away from his scheduled Glenn procedure. The moment I read his mom's facebook update, I think I got about 7 words in to her status, said "oh god", and went outside and cried. Once I had regained my composure, I came back and read the entire status. My heart broke instantly upon reading it. It broke for Amanda, (Logan's mom) and Chris (Logan's Dad) and it broke for me and my family as well. Seeing one of the kids we were closely following lose his battle with this CHD made it OH SO REAL that this is reality. This is something that can happen to anyone with HLHS, and it could happen to us. We spent the entire day in a quiet, somber, yukky mood. We are now back to being absolutely terrified. I instantly went back to that surreal feeling I had in the beginning, where I am having a hard time realizing this is actually my life, not something I am reading about online or seeing on TV. It is my son who has HLHS, my son who has to start life struggling, and my son, who may not make it. 


It is a nasty pill to swallow. All of it. I ache so much for Logan's family. I can't imagine the pain they are feeling right now, and I can't imagine how that morning transpired for them. I hope it is something I will never be able to relate to, but I have to face the ugly reality that we may be able to relate completely someday. 


I hate this. I hate all of it. I hate that we couldn't spend this pregnancy excited, and looking forward to meeting Wyatt. I hate that we have had to spend each and every day being scared. I hate that with about 9 weeks of pregnancy left, I am torn between being able to finally see my beautiful boy, and being terrified of what is to come. I hate that this hurts. I hate that this hurts my family, and my friends, and those around me. I often wonder what it is that we did wrong, why do we deserve this? We tried for SO long to get pregnant. We wanted Wyatt  SO badly. I cried the moment I saw that positive pregnancy test. DJ cried the moment he heard Wyatt's heartbeat. Austyn was thrilled to find out he was having a little brother rather than a little sister. And then, just like that, life slapped us in the face. Hard. How is that fair? How is it fair to any heart family out there? To any kid who has to face anything like this? 


Our house is full of Wyatt's things. He has absolutely everything he needs to join our family. And every time I see his things, they make me smile, and they make me want to cry. What if we don't need all those things? I can't imagine coming home, and looking at them, knowing that Wyatt will never use them. And I hate that that is something I even have to consider.


I don't know what I have to do, what I have to think, or say, to make Wyatt strong enough to get through this. I don't know how to help. But, whatever it is that I need to do, I am more than willing to do it. I just want to watch my boy grow up big and strong like his big brother. I want to watch him learn, and grow, and talk, and walk, and play, and love. Please, let us witness these things in his life, and let him live a long, happy life. Please.