2012

Today is the last day of 2012. The day couldn’t have come fast enough for me. During lunch, just now, I asked Dennis how it was possible to have the worst year of your life when the absolute best thing of your life happened during that year? Doesn’t make sense, does it? That’s how it feels, though. I feel, without a doubt that this has been the most physically, mentally, and emotionally draining and painful year for me. And yet, the most amazing thing happened to me during this time and has made my life complete.

Between failed iuis and ivf cycles, painful progesterone, a major scare at 17 weeks pregnant, a surreal and nightmarish stay in the hospital, the birth of our 26 week old twins, and to now-- day 70 in the NICU, I’m not quite sure how we’ve survived through it all. But, we have. I’ve learned so much throughout this year and I’m not sure I can put it all into words. I’ve learned a great deal about myself, my husband, my family, my friends, my babies, strength, courage, love, compassion, pain, heartache, patience, fear, life, death, religion, oxygen, nurses, hospitals, human nature, selfishness, selflessness, odds, chances, routines, determination, the will to live, obstacles and miracles.

2012 will never be one of those “forgotten years” where you can’t really remember exactly what you did or who you were that year. Take for instance the year 2004. I remember bits and pieces from that year, but nothing major stands out. 2012 was the year that changed everything for me. I will never forget it. Part of me wants to forget it… block it out and never recall all of the pain and heartache. But if I forgot 2012, I wouldn’t remember what it was like to see Violet and Cameron when they were EMBRYOS. I wouldn’t remember what it was like to walk back into the bathroom after taking what I thought was a negative pregnancy test and seeing the faintest , little, pink line. I wouldn’t remember what it was like to tell my parents that they were going to have another grandchild… and then telling them that they were going to have TWO. I wouldn’t remember what it was like to see TWO little jumping beans on the ultrasound screen. I wouldn’t remember what it felt like to feel my babies moving inside of me… I would do it all again just to feel that one more time. I wouldn’t remember what it felt like when the ultrasound technician confirmed what I already knew—I was carrying my son and my daughter. I wouldn’t remember what it felt like to look at my babies for the first time… even though I was terrified, they were the most beautiful things in the world and I wanted nothing more than to take care of them forever. I wouldn’t remember what it felt like to touch them for the first time or what it was like to feel their skin against mine when I first got to kangaroo with each of them. I wouldn’t remember what it felt like to feel their tiny little hearts beating against my chest. I wouldn’t remember the first time I heard them make a noise and the first time I heard Cameron cry. I wouldn’t remember the first time Violet latched onto my finger. I wouldn’t remember the first time I knew that they were looking right at me. I wouldn’t remember how happy I was when my son came off of the ventilator. I wouldn’t remember what it felt like when Violet took a bottle. I wouldn’t remember what it was like to have them both close to us and each other. I wouldn’t remember what it was like to look at them both at the same time and think about how absolutely beautiful they were. I wouldn’t remember what it felt like to know my babies were going to be okay… and that we were all going to make it together. I’d do it all again… just for a second of any of those things. THOSE are the things that have made my life complete. THOSE are the things that will NEVER let me forget this year and what it has given me.

I’m happy to see it leave. I’m welcoming 2013 with open arms. This new year is a fresh start for our family. While we are still dealing with being in the NICU, we know we’re close to our destination. We know it won’t be long now until we have our sweet babies at home where they belong.

Dennis and I know that when we bring the twins home our lives are going to be thrown into disarray, yet again. We’re ready, though. We’re ready for the 3 am feedings, the crying, the hundreds of diapers, the laundry, not leaving the house and the major lack of sleep. We’re looking forward to it. All of that stuff, as non-fun and exciting as they sound, are things we’ve been longing for.  Knowing that each of those things will be met with baby smells, and bath times, and smiles and kisses and cuddles (times two!) only makes us look forward to everything a little more.

On this last day of 2012, I am beyond thankful.  I’m thankful we’ve all made it to see this new year… this new year of hope and laughter and happiness. Tonight at midnight we will be at the hospital ringing in the new year with our future--our babies. We'll be celebrating this new year that brings my babies home to me.  Today, we learned that our sweet princess, Violet, will be coming home on Thursday. We are so happy and excited to bring her home and close this chapter of her life.  Soon, Cameron will follow. Perfection will not be reached until he is home, as well, but we’re getting close… so close I can almost feel it. Get here, 2013… the Sheppards are more than ready. We can handle anything, trust me.

Tired

The babies will be 7 weeks old in a couple of days. I can’t believe we’re surviving this! I'm tired.The past 7 weeks have been the most trying and exhausting days of my life. On facebook, I read people’s statuses and look at their pictures and get jealous that they are living a “normal” life. I know things will never be the same, but at least we will have our new normal when the babies come home.  It’s hard not to feel alone in this journey even though we have people all around us. It’s a very unique situation that not many people can relate to. I never thought I’d be experiencing it. I know it’s made me a stronger and more patient person, but I still don’t understand why it had to happen to us… to our babies.

The babies are doing well. The morning I last blogged, I hadn’t gotten my morning update from Dennis, yet. A little while after I posted, he called me and told me that both of the babies had had a rough night. Violet was back on the cannula and Cameron was having heart rate drops. Hearing these things was difficult and made me anxious to be with them for the day. When I got to the hospital I felt more alone than I had in weeks. Luckily, I have an awesome mom who came up to spend the rough day with me. The babies dsatted a lot and Cameron had a heart rate drop or two. Their monitors were going off all day! It was awful. Those monitors are enough to make you crazy, that's for sure! That seemed to be the worst of it, though. The babies are doing well today.

Yesterday marked the day that I would’ve been exactly 33 weeks pregnant. I don’t think I’ll ever get over how early these babies came. However, considering everything, we really are very lucky. We hit a HUGE milestone today when Violet had her first BOTTLE!!! Bottle feeding starts when the babies are doing well with their breathing and are showing signs that they can handle the bottle.  She took 10 mls out of her 36 ml feeding. She did so well and we were so proud of her. I couldn’t stop crying through the whole thing. Bottle feeding is a huge step closer to coming home. For now, she’s only going to be trying one bottle a day and we’ll slowly work our way up depending on how she tolerates them. At this rate, there’s a very good chance she’ll be coming home before Cameron. Our sweet boy is still on anywhere between 32 and 38 percent oxygen with 2 liter flow of oxygen. They’ve tried to wean him down a couple of times, but he doesn’t seem to like it very much. Hopefully, within the next few days he’s able to tolerate the weaning. We’d really like to see that oxygen lowered. He is not ready to bottle feed with his breathing issues. He is, however, getting a lot bigger. Cameron is now about 4 lbs 7oz and Violet is 3 lbs 14 oz. They’re really doing a nice job with their weight gains.

I’m not sure how we’ll handle Violet coming home before Cameron… especially if it’s before the holidays. The whole thing breaks my heart. While I want her home more than anything in the world, I feel sick thinking about taking her home and leaving him there. First, I’m not sure how I would take care of her and go spend time with him and second I HATE the idea of him being in the hospital by himself and not here with us. Our family won’t be complete until we are all here. I just can’t wait much longer!!!

6 Weeks!

The babies are 6 weeks old today! They are doing great. Violet was a little jealous of her brother, so she is also in a crib now! Violet is completely off ALL oxygen and is doing amazingly. We are so proud of her. Cameron is still on 2 liters of oxygen, but he’s doing well and they are weaning him slowly. We have learned that Cameron definitely works on his own time. He gets things done when he wants to get things done.

In less than two weeks they are most likely going to start trying bottle feeding with the twins (as long as Cameron is off the high flow oxygen). I’ve heard that oftentimes this is the most frustrating part. The babies will be just 34 weeks gestation, but will need to get the coordination of sucking, swallowing and breathing to be able to take their bottles. This is a requirement to be able to go home. They want to make sure that they consistently take their bottles for at least 48 hours. During this time the babies will also start to be weaned off of the caffeine. They are on caffeine because it works as a stimulant and kind of reminds them to breathe. The nurse from yesterday said that they also start to wean themselves off of the caffeine simply because they gain weight and the dose does not go up at all.

The subject of coming home now comes up every day and with each nurse. The fact is that we have no idea still. In a perfect world, they would catch on to bottle feeding, be weaned off of the caffeine and be able to do everything on their own by the end of the year. We all know we don’t live in a perfect world, so I have to be realistic. It’s so hard having no idea when they are coming home or if one will be home before the other. Everyone keeps asking me when they are coming home and each time I have to say I don’t know.

I think a lot of people think that being a premature baby just means that you are born small. My babies were born at 26 weeks gestation… 14 weeks before a complete pregnancy. Every single part of them was underdeveloped. My babies were very sick… especially Cameron. So, when people were telling me to enjoy my time at the hospital and to relax because everything would be fine, it was very difficult to deal with. At this point, the babies aren’t nearly as sick as they were 6 weeks ago or 5 weeks ago or 2 days ago for that matter. But, they would still only be 32 weeks gestation. They still have developing to do and there are still a lot of hurdles to get over. I know most people are just trying to help, but people have to remember that being a preemie isn’t just about size.

I’m starting to wake up throughout the night just thinking about them. It’s not a bad thing, but it just makes me wish I could go peek at them or smell them or hold them or hear them breathing. I woke up at 4am the other day and was wide awake. I couldn’t get these words out of my head. Then I put the words to a tune. Before I knew it, it was 4:15 and I was pulling out my phone to jot down all of these words. Then, since I didn’t want to lose the tune, I downloaded a voice recording app and recorded myself singing the tune. Sooooooooo between 4 and 5 am the other day, I wrote a song. You might be thinking, “hey, I didn’t know Betsy wrote songs”. Well, I don’t. What a weirdo. But, I could not get this tune or these lyrics out of my head. It’s about the babies and being in the NICU. I guess I wrote it because when I was thinking of songs to put on their dvds, I was trying to find some about being in the NICU or similar themes. The only ones I found were depressing or creepy. So, I just wrote my own.

Anyway, I’m going to finish getting ready to go see my little sweeties. Hopefully, we all have a great day today!

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. 

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.