An AMAZING 3rd day

Today was an absolutely, positively, amazing day!

My dad brought Austyn to see us at the hospital, and we had already talked to Wyatt's NICU nurse about bringing Austyn into the NICU to meet Wyatt. We were so excited to see Austyn, and to finally introduce Austyn to his little brother. When Austyn got here, he sniffled a few times, and DJ and I ended up deciding that because of those few sniffles, we shouldn't take Austyn into the NICU. So, we went walking down to see Wyatt, and I lost it. I was so heartbroken that Austyn wasn't going to be able to meet Wyatt. We got down to the NICU and the nurse asked where Austyn was. We told her what happened with the sniffles, and she asked if he was sick. We told her no, that he was not sick, and that he had been camping this weekend and had a campfire and we assumed that was where the sniffles had come from, but that we had decided not to risk bringing him in. She told us to go get him. So, I lost it again. This time, crying tears of joy, of course, that our boys would in fact be able to meet.

We went and got Austyn out of our hospital room and took him down. We explained to him how he needed to be quiet, and he couldn't mess with all the stuff in the NICU. He washed his hands with the nurse singing "Happy Birthday" to Wyatt as a way to make sure he washed his hands long enough. He got to see his baby brother for the first time (other than in pictures) and smiled a big old Austyn smile. I of course cried, again, at the sheer beauty of this moment. 

Then, the nurse swaddled Wyatt, and got him out of his bed and put him in my arms for the first time in his life. Wyatt is only 3 days old, and I know that in the grand scheme of things, 3 days is not a long time. But when you are waiting to hold your son for the first time ever, and you know that there is a possibility that you will not get to hold him before he has open heart surgery, 3 days is a VERY long time. I finally had my baby in my arms. Cuddled up next to my body, able to feel his weight, his breathing, everything. I remember the first time I ever held Austyn, just minutes after he was born, but this was different. This was SO powerful, I think because of Wyatt's HLHS, and because I had to wait to long for this moment to come. Austyn stood next to me and watched Wyatt, and we made a few little jokes and things to make it more fun for Austyn. Babies aren't really all that exciting to kids, I know, so we tried to make things more entertaining for Austyn. Eventually, Austyn said that he was ready to go back to the hospital room, so DJ took him back upstairs while I continued holding Wyatt.

When DJ got back, we switched, and he got to hold Wyatt for the first time. He instantly cried as well. And he got his turn to just sit in the chair, and snuggle with Wyatt, and feel the weight of him in his arms. 

The entire time we were holding Wyatt he was so awake and alert. His eyes were open, he was looking around, and looking at each one of us when we spoke. We told Austyn that our voices were familiar to Wyatt, and that he knew that we were his Mom, Dad, and Big Brother because he could hear us while he was in my tummy. It was so great to see Wyatt so alert and awake, since he is usually sleepy and when he does wake up, he isn't that alert. The nurse told us that us holding Wyatt would give him a large endorphin rush, and that it was really good for him to be held. She said that he may sleep for 8-12 hours after the encounter, because of all the endorphins and hormones that were released. She also said that my milk production would probably increase because of the encounter, because being so close to Wyatt like that had a huge affect on my hormones.

After we were finished, both DJ and I felt a huge high. The feeling was astronomical. It is almost unexplainable. We were both completely filled with joy. The only downside was that we were planning on eating some lunch with Austyn after we were finished with Wyatt, and when DJ came to bring Austyn back to the room, a couple more visitors had showed up, so my dad decided to just take Austyn home, and we didn't get to have lunch with Austyn like we had wanted to. I didn't get to say goodbye to him or tell him I love him before he left, so that left me a bit sad. The rest of our day was so crazy, we had visitors back to back the entire day, and we didn't get a chance to call Austyn, so I am now missing him like crazy. I plan to call him in the morning before he goes to school just so I can tell him I love him. 

We ended our day with Wyatt, and I sat in the chair next to his bed for 45 minutes or so, just holding his hand, and watching him sleep. It was so peaceful to just be next to him, watching him. 

It was such an amazing day, and a wonderful way to bond with both of our boys, who mean the world to us. I couldn't have asked for a better day. Tomorrow I am being discharged, and we are going to try to board at the hospital, so we can stay with Wyatt here until he gets transferred to the PICU after his surgery. Hopefully, we are able to do so, and aren't forced to go home each night. Fingers crossed it all works out.

 

Adjusting

It's the end of day #2 as heart parents. Making the regular trips from our room on the labor and delivery unit down to the NICU to be with Wyatt has become very natural and routine. Spending time with him, holding his hands, rubbing his head, changing his diaper, taking his temperature....it's all become so...."normal". Or at least it's become a new normal.

But along with that new normal comes all these new pangs of guilt. We have set care times where we are allowed to be more involved in Wyatt's care, and they are every 4 hours. When we go down for care times, we generally spend about an hour with him, and then let him rest. We feel so guilty for not being next to his side at all times, but at the same time we feel like we should leave him be, so he can sleep and rest and get as strong as possible. They are going to discharge me from the hospital come Monday, and we don't want to be away from Wyatt, so we are going to see if we can board at the hospital, in order to be closer to Wyatt until he has his surgery and gets transferred to the PICU. But then I feel guilty that we won't be home with Austyn. I know that this whole situation is difficult for him, too, and I so badly want to be home with him laughing and playing. But I can't imagine not being next to Wyatt through this entire experience. I sort of feel like no matter what I do, I'm not doing the "right" thing. It is so frustrating and heart breaking to know that I can't fully be the mom both boys need me to be, simultaneously.

I think Austyn is going to come visit us tomorrow and I am SO excited to see him! We talked to him on the phone today and he sounded so grown up, so big. Im sure that's partially because we've been spending so much time with his baby brother, but still. My little guy just doesn't seem so little anymore. I can't wait to hug and kiss him and love him when he comes to visit. We may also be able to take him to meet Wyatt for the first time, which will be great, and will be the first time we will be together as a family of 4.

All the anger and resentment I thought I had gotten rid of has returned in the past 2 days. It's hard not to be jealous of the families who's babies are healthy, who get to keep their babies in their hospital rooms with them. It's hard not to hate life for handing us such a shitty deck of cards. But as I say that, I also think that without these cards, we wouldn't have Wyatt. We wouldn't have this beautiful boy that we love so much. The boy who loves to hold our hands and have his head rubbed. Who smiles his 2 day old smile, with his little monkey toes, and his perfect little face. Who coos and looks up at us with his cloudy brand new eyes. Just starting this part of our journey makes it hard not to resent that we don't get to take our perfect little baby home tomorrow like all those other families get to do.

In all, I would say we are doing well. The days go by fast between being with Wyatt, and pumping, and trying to give myself the rest my body needs, and all the amazing people who come to visit us. Wyatt is doing so much better than we had anticipated, which has allowed us this great time to just bond with him and love him before his surgery next week. DJ and I's relationship is still very strong, and our communication about the entire situation has been great. He has definitely earned husband of the year award taking care of me while I heal from my C-Section, and helping to make sure I take care of myself, not just Wyatt. He also, of course, gets the Daddy of the year award for being so awesome to both Austyn and Wyatt, and for being so strong for them both.

I dread surgery next week, and seeing Wyatt with so many tubes, and intubated, and trying to recover. I dread having to put Austyn through that, and having to be away from home even longer. But I have to focus on the now, and be thankful that Wyatt is doing well, and that Austyn is a happy, healthy 6 year old. I have to deal with each bump in the road as it comes, rather than trying to deal with the future bumps early.

I love my family SO much! And I am going to do whatever I have to do to keep us ALL happy, safe, and healthy.

Our first day as heart parents

It is officially safe to say we are 100% absolutely in LOVE with Wyatt. Every moment we get to spend with him is amazing! Even though he is in the NICU, we are still forming that baby to parent bond. Just this morning he was a little fussy, and as soon as I gave him my finger to hold and started rubbing his head, he started sucking on his pacifier and cooing, calming down completely.

Both DJ and I anticipated that these first few days would be really difficult and tearful. But both yesterday and today have gone much better than we expected. Wyatt is doing SO well in the NICU. His O2 Stats are amazing, always in the 90's. Anything above 70 is good for Wyatt, so the 90's are tremendous! His heart rate is steady, and he is doing all the things he should be doing. 

We were able to help his nurses give him his first bath this morning, which was amazing. He isn't eating by mouth, but I am pumping and the NICU is storing my milk for his use later on, hopefully. Every 4 hours we are able to go help the nurses take care of him, checking his temperature and changing his diaper. 

Austyn was able to come visit me in the hospital last night. He was pretty freaked out because he went to bed Wednesday night with everything right as rain, and then woke up Thursday morning with his mom and dad at the hospital. I think to a 6 year old, anyone in the hospital is dying or seriously injured, so the thought of his mom being in the hospital really scared him. Once he was able to see that I am fine, just healing, and that I am still the same old mom, he felt much better. He is going on a little camping trip this weekend to help keep him occupied and entertained, and we are hoping on Monday we will be able to introduce him to Wyatt.

All in all, we are doing well. Wyatt's strength is absolutely amazing and uplifting. I am healing really well, and have rebounded from my C-Section well. We have had a ton of visitors and support both through the blog and through Wyatt's Facebook Page! We are absolutely amazed with how many people are sharing Wyatt's story and praying for him, and we appreciate every one of you. 

I will do my best to update the blog as much as possible throughout our stay here at the hospital. Again, DJ and I appreciate each and every one of you and your support. Wyatt thanks you too....can't you tell by his beautiful little face?

Happy Birthday sweet boy

Around 11 last night I had a hellacious contraction that lasted 10-15 minutes. Afterwards, I laid back down in bed figuring if I was in labor I wouldn't be able to sleep. I woke up at midnight to another hellacious contraction and my water breaking. So I woke DJ up and told him I thought we needed to go to the hospital. We called my mom to come over since Austyn was sleeping, and we called my best friend to let her know, and we headed to the hospital.

It was around 12:30 when we left the house. We got to the hospital, got to labor and delivery, and eventually they checked my cervix. I was dilated to 8! So things got crazy. There were tons of nurses and doctors everywhere, and my contractions were closer and closer together.

We went to the OR, and I eventually got my spinal block. I had a contraction while they were putting it in, and cried out in pain. DJ heard me from outside the room and panicked. He knows I am good with pain so the fact that I was crying out was not good. DJ got to come back in, and it was operation time.

Wyatt was born at 2:13 am. He came out crying just like any other baby. DJ was able to cut his cord, and they brought him over to me so I could "hold" him and kiss him before he was taken to the NICU. He looked amazing, was crying normally, and was breathing on his own. In the NICU, he got his catheters inserted into his belly button, and started giving his prostaglandin. They administered vitamin K, checked his blood sugar, etc. They said his hips are a bit weak and they may put him in braces until his bones start to fuse. He is doing well, all things considered.

I am waiting for the feeling in my legs to come back from my spinal block, and it is currently shift change in the NICU. Shift change is over in about an hour and I should be able to go be with Wyatt then. DJ is doing well, he's very tired since we didn't sleep, but doin well.

We are so excited that our boy is here but we are so afraid of what is to come. We're here for you Wyatt, I promise!

Listening to your gut feeling

This morning, I was driving to work, and I was thinking back to the beginning of this pregnancy. January 26th, we got our positive pregnancy test, and I couldn't believe my eyes. I yelled for DJ to look at it, and he saw two lines too! I cried the moment he said it was positive. We were both SO excited.

Then, as time went on, I didn't feel as excited as I thought I should. I had expected to have this overwhelming sense of joy. I expected to be consistently excited to be pregnant. We had waited for that positive test for over a year- where was my excitement? I shrugged it off, thinking my brain was just playing tricks on me.

Then the paranoia kicked in. I was constantly paranoid that something was wrong. I was terrified of miscarriage, or some other terrible news. We had our first ultrasound, and our little peanut was perfect. But still, I couldn't shake the paranoia. Then we had our blood work done for down's syndrome and what not, which all came back negative. I thought maybe that was what I needed to start feelin better. But it wasn't. I still had the paranoia. I had told DJ about it, and we decided I had spent too much time on trying to get pregnant forums, and had read too many other sad stories.

So even though I was telling myself of was all in my head; the doctors said everything was fine, I couldn't shake the nasty feeling I had. May 22 was the day we received Wyatt's HLHS diagnosis. We took Austyn with us to that appoinment, thinking it woul be neat for him to see his baby brother or sister, and to be there the moment we found out if we were having a boy or a girl. But I had a bad feeling about tht too. I remember thinking "what if we get bad news, I dont want Austyn to see my reaction, see me cry,etc." But, again, I ignored the thought. My intuition had been right. Something was wrong, very, very wrong.

That day I finally admitted to my best friend that I had had this paranoia the entire pregnancy. She said that she too had had a bad feeling the entire time. We were both just too afraid of our bad feelings to tell the other about them.

I recently learned of a girl we know who is newly pregnant and had some cramping and things. I immediately said "if she feels like something is wrong, she needs to listen to that gut feeling". In our case, even if we had gone to the doctor earlier than 20 weeks and demanded more testing, our situation would be the same. HLHS isn't the kind of thing you can "fix" if you catch it early. There was nothing we could do then or now to change the outcome. But still, I wish I had listened to that gut feeling rather than shaking it off for 20 weeks.

Hindsight is always 20/20 isn't it?

Patience is a virtue

Today I am 37 weeks and 2 days pregnant. In the 6 years between my pregnancy with Austyn and this pregnancy, it seems I had forgotten just how miserable the end of pregnancy is. Since I know this is my last pregnancy, I am trying to enjoy it, trying to enjoy every bout of hiccups, every kick, every punch. But, I am still miserable. I think I've outgrown myself at this point, and I feel stretched to the max. Thankfully, I've been sleeping a little bit better, so that has been helpful.

While my body is oh-so-ready for this pregnancy to be over, my brain is not. Just last night it suddenly hit me, again, that in 12 short days Wyatt will be here. We will be in the throws of having an HLHS baby. We will be practically living in the hospital. I will not have a job. And we can't even begin to fathom the thoughts and emotions we are going to have to process.

Again, I am back to that point where the only thing I can say is "it isn't fair". Why does my baby have to have a heart defect? Why does my family have to go through this? Why can't we be like the millions of families out there who go to the hospital, deliver a healthy baby, and go home a few days later? Why do we have to suffer? None of it seems fair, not even a little bit. I know, I know, life isn't fair, Sahra.

So, I am torn. I am torn between being super anxious and excited to meet the infamous Mr. Wyatt, and being utterly terrified. I can't wait to see him, to touch him, to kiss him. But at the same time, I am not even guaranteed to be able to hold him before surgery. Our cardiologist anticipates we will be able to, and highly advocates for it, but he doesn't make that decision in the end.

DJ and I are going to be fighting a daily battle against our sanity, and our mental stability. I know we are going to struggle to feel like we are good parents, because we can't both be there 100% of the time for both boys simultaneously. I wish there was a way I could be at Wyatt's side at all times, and at home with Austyn to laugh and play and make dinner and help with homework, etc. But it's just not possible. I just have to keep telling myself that I would be at Austyns side if he were to be in the hospital, and that is exactly what I am doing for Wyatt.

As the time gets closer, it all gets more and more real each day. I have imagined the morning of our C-Section probably 100 times. I can picture waking up, taking a shower, getting ready, leaving the house, and driving to the hospital. I can even picture checking in, getting IV's put in, putting on the hospital gown. And that's where it ends. Because I don't know what to expect. Not only have I never had a C-Section before, but I just don't know how we're actually going to feel in those moments. Will we be excited? Nervous? Relieved that this is all finally beginning? I have no idea.

12 more days I have to live in this world of unknowns, before a whole new world of unknowns begins. 12 days.

Feeling very blessed

A few nights ago, DJ's dad called to let us know that he and a family friend were putting together a softball tournament/benefit where the proceeds would benefit Wyatt. In the past couple of days, it seems everyone has been hard at work on getting this all set up, and today we saw the flyers they put together for the event. They have planned to do the softball tourney, a silent auction, a raffle, and have also planned t-shirts.

DJ and I are both completely humbled by the simple fact that someone would go completely out of their way to put this benefit together for us. Obviously, any help we are able to receive is amazing, and we are super grateful, but beyond that, these people are spending their own time creating this event to help us. I just feel like we are SO lucky to have such wonderful people in our lives, to do such a wonderful thing for us.

A lot of times, while dealing with the realities of Wyatt's HLHS diagnosis, we are left feeling very alone. We are left feeling like no one understands how we are feeling, the struggles we currently face, or the struggles that have yet to even begin. And this situation shows us that while only a select few people actually know what we're feeling (those of you who have also received a diagnosis), we have a HUGE army of support who empathize with us, and want to help. It is a really nice reminder that we are not alone. And that is a comfort I don't ever want to let go of.

I am so excited to see how this benefit turns out, in the end. The benefit itself will take place on October 6th, so we will be in the hospital with Wyatt and unable to attend, but I am sure that we will be able to hear many stories about how it went. I am hoping that we are able to hear tons of stories of the outpouring of love for our little guy.

Again, a huge thanks to my father in law, Dwaine, Lila, Alicia, and Kristen, as well as anyone else who has had a hand in putting this event together- this means SO much to us!!

Nearly 36 weeks

Well...we are getting there. I will be 36 weeks on Tuesday. We went to the doctor today, and Wyatt is doing tremendous. My fluid levels still aren't as high as they should be, but they were at a 8.70 today, up from the 7.13 we were at on Tuesday. Wyatt's movement and practice breathing looked amazing while we were there, and the ultrasound technician said "I couldn't possibly give you a better score on your biophysical profile". So that is AWESOME! We were supposed to go on the schedule today for our C-Section, but the office was super busy, and we didn't even see our Doc. We assume that when we go next week, she will put us on the schedule.

I got to the hospital early this morning, and was just sitting in my car waiting for the appointment time to come. I was on the phone with my best friend, and I saw a couple walk out of the hospital. The woman was pregnant, and crying, and the husband looked miserable. I told my best friend "I think I just witnessed a couple having a day like we had on May 22nd" (May 22 was the day we received Wyatt's diagnosis). When we got up to the doctor's office for our appointment, the woman at the front desk called me over, and wanted to ask me a question. She then proceeded to tell me that they had a couple who had just received a diagnosis, and she was wondering if I knew of any support groups or anything I could forward on to them. I promised her I would put some information together for them over the weekend.

I remember that day so vividly. It was the single worst day of my life. I know the pain those parents are feeling right now, even though I have no idea what their diagnosis was. No matter what it was, I know how much it hurts. How it feels to go through the thousands of thoughts and emotions that hit you when you find out your baby isn't perfect. I know what it is like to mourn the loss of a perfect child. I remember the fear, the disbelief, all of it. So, hopefully, I will be able to provide some information to this couple that will help support them. I am also going to give them my email address and our blog information. I know that the two HLHS mom's I have been in contact with have been a tremendous support for us; they are the only ones who understand. Hopefully DJ and I will be able to provide that support for this couple too. And we were talking about how if they have a similar diagnosis, we would be the perfect family to follow, since we have already been through the pregnancy, and are about to start living the life with a CHD child, they can follow our journey from step #1. Hopefully, they will take us up on that offer.

As the time is coming for Wyatt to arrive, we are just trying to prepare. We have our bags packed for the hospital, in case we have to go unexpectedly. We are both in the process of getting all of our work paperwork straightened out for our leave(s). DJ will be taking a month off to be with us at the hospital and be there for Wyatt's surgery and healing. I will be taking who knows how long off. At the least, we expect I will be off 7-8 months. We are trying to mentally prepare for the financial problems that will come with my no longer working. We are trying to be ready for any behavioral changes that Austyn may have because of Wyatt's arrival, and because of his CHD and his hospital stay. He will also have to deal with the fact that he is used to having Mom and Dad around every single day, and we both will be at the hospital for a while. We are trying to prepare for the pain we will go through, seeing our baby with so many tubes, and cords, and going through his operation, and the things to follow. I assume we can't imagine just how painful it is going to be, we just know it will be painful. 

And I am trying to enjoy these last few weeks of being pregnant. We have decided to have my tubes tied during the C-Section, so these are the last 25 days I will ever be pregnant. I am trying to relish in every kick and punch, and bout of hiccups. 

In case that has piqued anyone's curiosity - DJ and I have had many discussions, and have decided that for us, the risk of having another heart baby isn't one that we are willing to take. We don't feel it would be fair to us, or our friends and family, or Austyn and Wyatt, to have to go through this again. We did want a 3rd child, and originally were talking about trying to get pregnant again shortly after Wyatt's birth, but since receiving his diagnosis, have changed our minds. We just can't imagine going through all this again. We can't imagine putting Austyn through it again, and potentially putting Wyatt through it. And if, as absolutely terrible as it would be, we lost Wyatt, we especially could not imagine trying again. It doesn't seem right or fair, and we aren't willing to do it. We were meant to have these 2 little boys, and we will have them, and that is all. 

"I'll love you forever, I'll like you for always, As long as I'm living, My baby you'll be"