A Few Gripes

Today is day 41 in the hospital and day 37 in the NICU.  While I wouldn’t say it gets “better” or “easier”, it does start to become more normal. We’ve adapted to the huge change in our lives. I’ve become more accepting of the fact that my babies are in intensive care. It’s never better or easier, though. My heart still aches every minute of every day. Even when I’m there my heart is aching and my eyes are filling up with tears because I’m constantly longing to take them home, stare at them, and hold them as close to me as possible.

We’ve loved so many of the nurses we’ve had in the NICU… some more than others. I’ve never felt completely uncomfortable until today, though. The nurse today was a very nice elderly woman. By elderly I mean over 70. I’m not discriminating against her age, but it seemed to me she was a few steps behind on everything. There were a few times the babies’ alarms were going off and there was a long time before a response. Cameron and Violet both had remnants of their last feedings on their faces. She didn’t know how to take Violet out of her incubator. The babies normally get assessed right before they eat (every 3 hours) so that the time in between they are just sleeping. This nurse was constantly bothering them with in between assessments and blood pressure readings. Violet was cold in her incubator (the alarm told us so) and she didn’t do anything. In fact, she left the doors open! Cameron spit up… she left it. She spilled meds all over Cameron’s blanket and then never replaced them. I could go on with a few more things, but I’m going to stop here. I think I mainly needed to type all of these gripes down to get it all out. I felt like I was going to lose my mind.

Luckily, there was a great nurse next to us and she knew I was nervous. She came to check in every now and then and would try to help with certain things. I could tell our nurse didn’t appreciate it too much, but I know I did. A few hours into the day, I went and spoke with the charge nurse. I explained that I didn’t want to get her in trouble, but I was not comfortable with her taking care of my babies and that I would prefer to not have her as our nurse in the future. She was very understanding and listened to all of my concerns. I felt bad “telling on” this nurse, but when it comes to the health and well-being of my babies that will always win. She was a nice enough woman, but I really feel that if you are working in a NICU then you need to be 100% on your game at all times.

So, it was a very stressful day in the NICU today. I was anxious the entire time and couldn’t enjoy my babies at all. After I left, I felt so guilty that I didn’t get to enjoy my time with them. Sometimes it just makes me so overwhelmingly sick that someone else is responsible for taking care of my babies. Yesterday, while I was holding Cameron, Violet was crying and moving around in her bed. I know she was fine, but I felt so awful. I couldn’t help but cry. There was nothing I could do. All I wanted to do was hold my sweet girl and I couldn’t. Sometimes this really just sucks.

On a positive note, Cameron is in a CRIB! He is finally big enough to be out of the incubator. They switched him over yesterday and he’s been able to regulate his body temperature since then. Violet is off high flow oxygen and doing very well. She’s still too little to be in a crib, but she is gaining weight. I can’t wait until I’m typing blogs while watching my precious angels sleep peacefully (because of course they will… at the same time). Please keep praying for the babies. Yes, they are doing well, but people tend to forget that I would still only be 31 weeks pregnant. They aren’t supposed to be out in this world, yet, but they are doing amazingly. My little fighters never cease to amaze me.

Best Moving Day Ever!

Yesterday was one of the most precious days of my entire life. As I sat kangarooing Cameron, our favorite nurse, Megan, came over to me and asked, “How do you think Cameron would like a change of scenery?”. I knew exactly what she meant and I got excited. It was FINALLY time for the twins to be moved next to each other!!! It’s been 5 weeks tomorrow and the twins haven’t been near each other. Within minutes, they began moving the bed that was currently next to Violet and started getting Cameron ready for the big move.

Once he was in his new spot, we couldn't take the smiles off of our faces. Dennis was kangarooing Violet so he was able to watch everything happen, as well. Then, even though I’d held Cameron for the day already, Megan took him back out and we were able to take our first FAMILY picture. Needless to say, my eyes are ridiculously puffy because I couldn’t stop crying. We waited so long for that moment and it was finally there. We held them there for a few minutes just soaking everything in when Megan said, “Okay, now I’m really going to push it”. She took Cameron from me and put him in Dennis’s arms. Dennis was holding our two babies and they were as close as they had ever been since being born. For us, it was absolutely incredible. I loved seeing them together. It was one of those few times in life when you picture something in your head over and over and then when it actually happens it’s even BETTER than you’d imagined. We all know that doesn’t happen very often. It was absolutely beautiful and it’s something I will never, ever forget. When I’m 100 years old, and I’m about to peacefully die in my sleep (because duh, that WILL be how it happens), I will have the images of last night running through my mind.

 

 

Violet slept through pretty much the entire thing. This was a little surprising to us because she’s our little party girl. She always has to try to stay awake when she knows someone is there. But, she was out like a light for the big move. Cameron, who sleeps through everything, was WIDE awake. He was the most alert I’ve ever seen him. His eyes were big and it looked like he just kept trying to figure out what the hell was going on. They were both so cute. We kept saying that Cameron was telling Violet she can’t boss him around anymore just because they are close again. I told Violet she can’t be a bossy pants, but I don’t think she’s going to listen. I told them both to look out for each other and to keep each other company when Mommy and Daddy aren’t there. The move actually made leaving a little easier because I knew they were so close. They’re finally together again. While they’re still in their incubators, it shouldn’t be too long before they can come out and be in NICU cribs. Cameron is wearing clothes and Violet will probably come off high flow and move to regular nasal cannulas soon. I’ll say this until the day I die (which will be when I’m 100): my babies are miracles. I love them more than anything in this world and I can’t wait to get them home. Miracles do happen.

One Month Old!

Our babies turned one month old yesterday! In a way it seemed to go by fast, but then I think about being in the hospital and the day they were born, and the first time I saw them in the NICU and it feels like a lifetime ago. I also think about the fact that that means we’re only about a third of the way through this (hopefully!).  It’s so strange.

We made it through Thanksgiving! One of the main reasons we were able to make it through is because when we arrived at the hospital, Cameron was on the high flow nasal cannulas! We were so happy. Violet was taken of the cpap earlier than Cameron, but this little man seems to be catching right up. They are both doing so well.  Every day that goes by is one day closer to bringing those little angels home.  They are making this so much easier on me by fighting so hard and progressing as they are. I’m so proud of them and pray that they continue to get bigger, stronger, and healthier every day.

With the holiday season starting, the emotional roller coaster is hitting me again. I’m not going to be decorating or putting up my tree this year. I’m not anti-Christmas or holidays or being happy or anything like that. I just know that every time I’d look at my tree, instead of getting that warm and cozy feeling, it would just make me miss the babies more. I can’t imagine missing them even more than I do now.  It’s getting harder to leave rather than easier and I think it’s because they are starting to really seem like BABIES. They open their eyes so much more and respond to our voices. Holding them is the most amazing feeling in the world because they are so content and warm and snuggly. It’s perfect. I never want it to end while it’s happening. I have to admit, though, it does get quite uncomfortable for my neck because I can’t help but stare at them the entire time.  

Everyone keeps asking when they will be home. The fact is, we don’t know. We don’t know because they are preemies. Today, they should be 31 weeks old… GESTATIONAL age. Instead, they are one month old. It’s absolutely insane. I know there are still so many what ifs and so many possible things that can happen, but I have faith that they will pull through. They are such miracles. We are so lucky that these babies survived! And now they are doing so awesomely.  One of the nurses said, “it’s okay to be happy, but you know you have to be cautious… you can’t trust a preemie”. After she walked away, I whispered to Cameron, “I trust you. I trust you and your sister”.  I hope that gave them some extra fight.

I can’t wait until the day I feel whole again. My chest feels empty and my mind is always thinking that I’m missing something. I know exactly what those somethings are and soon they’ll be at home with me, Dennis, and Ivy. Keep sending the love, prayers and support. 

Quick Update on the Angels

It’s been 4 weeks and 1 day since I was admitted to the hospital.  One minute feels like it was an eternity ago and one minute it feels like it could’ve been yesterday. Thankfully, I’m in a much better place than I’ve been since the whole experience began. I believe that this is because BOTH of my babies are doing well. Cameron is FINALLY off the ventilator and he is doing very well on the sipap. Violet is still on the cpap, but she is doing awesome on it and they are still talking about moving on with her, but nothing yet. My mind and heart are never at ease, but it certainly feels a whole lot better to know both of the babies are doing what they are supposed to do and they are well.

My heart continues to hurt every single second knowing that my babies are miles away from me. I won’t say it’s getting better or easier, it’s just sinking in. Our daily routine is becoming familiar. Acceptance is taking place whether I like it or not. I’ve been feeling more like myself. I’ve smiled and laughed. Of course I feel guilty after I do these things. I know it doesn’t make sense, but I feel like I shouldn’t feel okay for even a second knowing that the babies are in the hospital. Typing those words made me cry about it and feel guilty about it. I know it’ll never get better or easier, but as I keep saying, “if they’re okay, then I’m okay”.

Dennis was able to kangaroo with Violet today and I was able to do the same with Cameron. We were able to hold our sweet angels in our arms for two hours! I know I can speak for my husband when I say that it was perfection.  Today was also an amazing day because I heard my son cry for the first time. His little lungs are getting stronger and stronger. As soon as I heard it my eyes filled up with tears and I wanted nothing more than to pick him up and cuddle with him. I wanted to smell his head and tell him that everything will be okay forever.  His cries were precious. They were lower than Violet’s. She sounds higher and squeakier. His sounded more frog-like. Adorable, precious, amazing…  I’m so thankful.

Speaking of thankful, Thanksgiving is in less than a week. The holiday season has always been my favorite time of the year. This year will be quite different, but I’m going to do my best.

I just wanted to give a quick update on the babies’ progress. They are amazing and awesome. Please continue to pray for them and send us your positive thoughts and vibes.

Keep Keepin' On

It's a few days after Cameron's ligation and we're still waiting for this turnaround we've heard so much about. The past couple of days we noticed that he was twitching quite a bit and the nurses seem to think it's because he's in pain. I can barely stand when I see him like that or when I think about my baby in pain. I feel like I'm going to be sick each and every time. He's on a lower dose of morphine right now because they think the higher dose was making him a little lazy. Since he was being a little lazy, he was not generating his own breaths. This is what we need him to do to come off of the ventilator. While I was there today, the nurse kept telling me he was having a good day. While I still saw a lot of twitching (we were reassured that it's definitely not seizures), he seemed to be okay and his alarms weren't going off at all. She also had him on a lower percentage of oxygen which was making him work more. I know my little sweetie can do it, he just needs some time. My sister and husband have been telling me that he's just going to be more like me when it comes to pain and healing. It's always taken me a long time to heal or recover from something. Perfect example: the c-section. My infection is still here, but it's getting better. I wish it would just leave already so I can feel more normal... physically, at least.

Even though Cameron hasn't been doing too great, he has gained weight. He is up to 3 lbs now! Our little flower is up to 2 lbs 7 oz! She's doing very well. Violet had a little bit of an off day today, but the doctor believes it's because she needed a blood transfusion. So, as I type, my little sweetheart is getting a blood transfusion. She's up to 20 mls on her feeds and they started her on vitamins today. After her feeding, she threw up. I have a feeling that everything was just a little much for her today (meaning the 20 mls and the vitamins). I forgot to mention that Cameron is also back on feedings (2.5. mls).

I'm so tired of people looking at me. It sounds weird, but I feel so uncomfortable because I know people are studying how I look and how I'm acting. I know most people are just concerned and trying to help, but I've never had so many people study me and comment on my appearance in my life. It's a strange feeling and it's starting to get to me. Even if it's a compliment, it still feels awkward.

So many people have been so wonderful and caring throughout all of this. You certainly realize how many people truly care for you when you go through something like this. You also realize there are some people that just don't get it or are even more self-absorbed than you thought. Those aren't the people that matter, though. The people we've been focusing on are the TONS that are praying for us, supporting us, and helping us get through this nightmare. We are lucky to have so many awesome people in our lives... and even some that aren't really in our lives at all! I received adorable and thoughtful gifts from one of my best friend's future mother-in-law yesterday. I had never even met her, but she told me how happy she was for us. And she's certainly not the only one who has been so generous and thoughtful. Between all of the gifts, messages, visits, phone calls and help, we're somehow surviving.

Thank you to all of you. Someday Violet and Cameron will know how much love and support they received while our family was going through this difficult time. I will make sure that they realize how amazing it all has been. Keep praying for the loves of my life.

Reality

Beginning these blogs is getting harder and harder. I don’t know how to start them anymore because I don’t know what to say. I definitely still feel like I’m living someone else’s life. I just keep waiting to wake up and still be pregnant. I’m waiting to hear my alarm go off at 6am, to complain that I have to go to work, but go anyway. Waiting to walk through the doors at school and pick up where I left off… moving into Persuasive writing in Language and… I seriously don’t even remember where we were going in Reading. Waiting for my next doctor’s appointment or my next ultrasound… waiting to get bigger and bigger and more excited to deliver the babies. And then reality hits (again and again) like a ton of bricks. I never thought it would be so hard to adjust to reality and to something that happened almost 3 weeks ago. Nevertheless, here I am struggling every day.

The other night, in the middle of the night I awoke from a nightmare about Cameron. I woke up crying and had a sick feeling about it. That day I planned on going to the hospital a little later, but after the dream I just couldn’t wait and went up early. Right when I got there, Cameron’s nurse told me that he had a bad night. He stopped responding to his ventilator and then wasn’t responding when they “bagged” him either. I guess the whole episode only lasted seconds. After the episode, his doctor said that they realized the tube for his ventilator was a little small for him so they gave him a bigger one. He’s been fine since then. We also received the news that Cameron would need the surgery to close the PDA. Yesterday my sweet baby had his PDA ligation surgery. He did well and the surgery was a success. The doctor told us it’s normal for babies to get sicker the first 24 hours after the surgery, but then they normally pick back up. I was hoping this wouldn’t be the case with Cameron and that he would immediately start doing better. Of course, this doesn’t seem to be the case. Overnight and throughout this morning Cameron was having blood pressure issues. He also has some fluid in his lungs. He’s been put on meds and, again, I’ve been reassured that all of this is perfectly normal. His doctor still expects a full turn around for him and expects him to start progressing very soon. We know our little man will do this, but that doesn’t make it any less terrifying and worrisome for us. I love my sweet, little boy so much. I wish I could give him all of my strength and then some. Before the surgery, I had some kangaroo care time with Cameron. It was amazing, of course.  Also, for the first time, my husband got kangaroo time with him. It was wonderful.

Miss Violet is doing beautifully. My tiny princess is now on feeds at 15 mls!  They were able to stop her iv fluids tonight because she’s now getting enough nutrition from her feeds. According to the doctor, this is a very big step in her progress! She’s also doing very well respiratory wise and may soon be on a high flow machine. I’m hoping that will mean that little mask will come off and I’ll get to see her beautiful face a lot more often. I’m so proud of her for doing so well. What a little fighter we have. I have a feeling she’s going to be a little feisty. Between Violet and me, Dennis and Cameron are in big trouble.

Our little family is having a rough time, but we’re getting through it. I hope the babies feel our strength and presence as we go through this together. I hope they can feel how much we love them and how much we are praying for their health. Our friends and family are wonderful and continue to pray for us and send us their positive vibes all the time. We are very lucky to have such a great support system.

Still not much milk… at all. Still have the infection.  The road to recovery isn’t an easy one, but if my babies can deal with what they’re dealing with, then I can certainly keep dealing with this stuff.

I’m scared every second of my life now. I’m trying to be more positive and I think I’m starting to feel more normal, but the guilt and sadness will just not relent. Hopefully, as time progresses, and our babies get bigger and stronger, things will get better for all of us. For now, we will continue to visit, love, support and pray for our babies.