Random Little Update

It’s been two weeks since both of my babies have been home. How is it possible that time is now deciding to speed up? The time in the NICU felt like an eternity.  The past two weeks, however, have gone by in a flash.  The babies have adjusted well. They are pretty much on their 3 hour feeding schedule still and behave very well. It wouldn’t matter if they didn’t, though, because everything is perfect with them here. Last night was a little rough because Violet was up from about 1 am to 5 am then 6 am to 10 am. She wasn’t crying hysterically or anything, just very fussy and kept letting out her little screams. Poor little girl had a belly ache. Cameron was also wide awake for a few hours in the middle of the night, but he’s such a laid back baby so he just stared at his glowworm until he fell asleep.

They both had their follow up eye exams last week. Violet’s went well and she doesn’t have to go back for a year. Cameron is still in Stage One of ROP (http://en.wikipedia.org/wiki/Retinopathy_of_prematurity) also known as Stevie Wonder disease. Did you know that Stevie Wonder was a preemie? ROP is the cause of his blindness. We aren’t too worried about Cameron since he’s only in Stage One, but we’d like to see some improvement by his next appointment. The doctor said that it doesn’t stay the same and it will get better or worse. We’ll just have to wait and see. Cameron also will be going to a pulmonologist on Thursday to check on his lungs. He’s still on the diuretic so we need to figure out on long he needs to be on it. His breathing seems to be much slower than it was (which I’m assuming is a good thing) and he doesn’t ever really seem to struggle unless he’s refluxing pretty bad or something. All in all, the babies seem to be doing great here at home.

They are so cute that I can’t stand it. Cameron has such big features. His eyes and lips are both huge and so adorable. Violet’s features are delicate and small… strange because she is definitely the feisty one. As I typed those words she let out a blood curdling scream. It lasted a couple of seconds and then she closed her eyes again. Little weirdo.

The babies are getting their “newborn” pictures done this weekend by a friend of ours and we’re so excited for them. We were offered the services from Bella Baby in the NICU, but it just didn’t feel right having their pictures taken there. This way the pictures will be taken at home with someone who loves our babies and has supported us throughout the past 3 months… well throughout this whole baby process! We can’t wait to see how they turn out. A twin photo shoot is going to be so much fun!

The other day one of the mothers that I talked to in the NICU brought her other twin home. As I told Cameron and Violet that he was finally home, I had to choke back tears. I was so happy for her and her family. Only NICU mothers can understand what the experience is like when you have a baby or babies in the hospital. While there have been so many people who have supported and loved us through this, no one will ever know the ups and downs of life in the NICU. We appreciate everyone trying so hard, though. We’ll never forget the love we have been shown… so much that we’re STILL receiving packages in the mail for the babies. There are a lot of good people in this world. 

My due date was on Saturday. It was very strange, but it almost felt good to get it out of the way. That date has been stuck in my head since May 10th... well probably before that since I'm sure I did the exact calculating before the transfer. Either way, it's official, the babies are supposed to be here, now! 

Letter to Family and Friends

First and foremost, thank you all so, so, so much. These past 3 months have been an incredible roller coaster ride for the Sheppard family and to those of you that have showed us your love and support, we will forever be grateful. In times like these, it becomes clear how much people love and care for others. Thank you forever and always.

Second, we decided to write a “letter” so we can answer all of your questions and start talking about visiting the babies. This is the easiest way to respond to everyone and cover all of the things we’d like people to keep in mind when it comes to the babies. Please, please don’t be offended by any of the “rules” we’ve set up. Everything we’re asking is for the health and well-being of the babies. Everything we’re asking (well, almost everything!) is based on the recommendations of nurses and doctors. We love you all and don’t want anyone to be offended or take anything personally when it comes to helping or visiting.

So, here we go…

1.   We’d love for ALL of you to visit… but obviously, not at the same time. We’d love to throw a big party to celebrate the babies coming home, however, this would probably a very stupid thing to do. If you would like to visit, please inbox, email, call or text me. We will set up a time that works for all of us.

2.     If you’ve been sick within the last few weeks, please refrain from seeing our babies for another few weeks. Even if the illness was just a little cold, we’d prefer you wait a little while before coming over. The babies are preemies and more susceptible to illnesses. Any time an infant gets sick it can be very scary, but our babies getting sick can mean going BACK to the hospital. Needless to say, this is the last thing we want. Please don’t be offended if we ask you to wear a mask when holding the babies.

3.  We know some of you won’t like this rule, but our nurses have stressed to us that if you have not gotten your flu shot then you should not be in close contact with the babies. For example, holding the babies. The flu season is one of the worst we’ve seen and even if you aren’t sick, that doesn’t mean you can’t have those germs with you! You can still visit (as long as you aren’t sick), but no holding.

4. You will be very tempted, but please don’t kiss their faces just yet!!!

5.  Please wash your hands upon arrival and anytime you touch/hold the babies. We also have hand-sanitzer readily available for you to use!

6.  Please remember that they are preemies. They are going to be 3 months soon, but they are not considered 3 month olds. Their due date hasn’t even arrived yet! They are much more like newborns. If they are sleeping, please let them do so. They do their best growing when they are sleeping!!!

7.  So many of you have asked how you can help. Diapers are helpful. Very helpful. They are in size 1 Huggies. Please do not think I am asking for diapers here… this is only for the people who constantly ask what they can do or bring. We are in no way suggesting that you need to bring something when you visit. Your love is all the babies need!

8.  Since the flu is so bad this season, we are asking that you wait to have your little ones meet our little ones.

***Sorry if I sound like a teacher or over protective mom, but I am both of those things! Spending 3 months in the hospital with our babies has taught us a lot and we hope you all respect our wishes. Thank you and hopefully we’ll see you soon!!!

We're ALL Home!

Cameron is home. The emotions I felt the day we brought him home are so hard to explain or compare to anything. I’ve never felt the things I’ve felt in the last 3 months and I don’t think I will ever be able to do my emotions justice because I just can’t find the words. On January 15, 2013, Dennis and I drove to Christ hospital for our baby for the last time. We circled one of the incredibly annoying parking garages for the last time.  We hopped in the elevators to the second floor and showed the security guard our “parent/caregiver” bracelet for the last time. We were buzzed in and entered the gowning room for the last time. We stepped through the large double doors to the NICU for the last time. I scrubbed in for the last time with a smile and my heart pounding.  I greeted my sweet baby in the NICU for the last time.

Trying to hold it together that morning was a difficult task to say the least. I cried the entire car ride over and of course as soon as I saw my baby I was choked up again. I couldn’t believe the day had finally arrived. Had it? It felt like a dream. Actually, were the past 3 months real? It all feels like some strange dream. While the dream may be over since the babies are home, I still kind of feel like I’m in that weird state between sleep and awake. The feeling where you are groggy and can’t tell if everything was a dream or not… I’m not sure if I’ll ever accept the past 3 months as a reality. Weird.

Back to Cam’s homecoming day! We were so happy that Nurse Megan was there with us on discharge day. She took care of him right after he was born and has been with us ever since. She’s been through our ups with us and she’s been through our downs with us. She’s given us hope and support and has been there for Cameron on the roughest days of his life. It was only fitting that she be there to see him graduate. How fitting that Megan was the one to cut off my “parent/caregiver” bracelet. How fitting that she was the one to walk Cameron down to our waiting car. How fitting that she was the last face we’d see as we pulled away from the hospital.

Before we took Cameron downstairs to wait for Dennis to pull up, I had to make a stop in the gowning room to remove my gown. I flashed back to the first time I was in the gowning room. I remember wondering what the hell was going on and what I was doing there and how I was going to do this every day for at least 3 months. The time did not fly by like people said it would. The time dragged. But in that moment, I couldn’t believe how far we'd come and that we had finally made it.

We arrived at our home and were greeted by a big sign that said “There’s No Place Like Home”. My sister had made the sign and my mom hung up balloons, just as they had for Violet. My parents, Violet and Ivy were all anxiously waiting for us. The picture was finally complete. Our family was finally home.

Dennis and I have not slept much (at all) these past few days. I wouldn’t have it any other way. Sleep deprived as we are, I couldn’t be happier. Everything is perfect. My sweet Violet Laurie and Cameron Patrick are home at last and ready to start their lives. I will never, ever let them forget how incredible they are and how hard they fought just to live.They are amazing. My Papa said it perfectly the other day, “The last piece to a beautiful puzzle”. While this puzzle is finally complete, we’re moving on to the next. We can’t wait to see what’s in store for our family… only great things, I know it.

The End is Near

Cameron’s surgery went very well. Thursday we waited at the hospital ALL DAY for the surgery only to find out at 8:30 pm that the doctor had cancelled it (without telling anyone). I understand the doctor had to cancel, but how incredibly rude to not notify the NICU or the family.  My poor baby didn’t eat anything for 16 hours because of the surgery only to have it be cancelled. He was added on to the schedule for the next day around 3pm. Again, we waited for a little while, but not nearly as long as the day before. Cameron was a trooper. He was pretty content and would only let out a few cries of hunger. He was even pretty good when he had to have the iv fluids put into the side of his head. I definitely couldn’t watch this part… my poor little guy is so tough.

Going into surgery, our biggest concern was still him being on the ventilator when he came back to the NICU and how long he would be on it. We know Cam’s history of healing and getting comfortable with things.  Dennis, Nurse Megan and I bribed him with everything imaginable. This kid is seriously going to have everything and anything he wants… not that Violet won’t… it’s just already been promised to Cameron.

As we waited for the nurse to come get my baby to take him back to surgery, I just kept thinking how amazing my little boy is. He’s gone through so much and is still so loveable, content and cuddly. He isn’t an angry baby or a baby that is easily irritated or upset. What a great baby.

When they took him away, it was very hard to watch, but we were ready. We had been waiting to get this surgery over and done with for a while now. Dennis and I went back into a waiting room and waited…

It wasn’t long before I got a text from Nurse Megan that said “CAM GETS WHATEVER HE WANTS”. My heart stopped because I knew that this meant he was coming back to the NICU OFF of the ventilator. Dennis and I cried and smiled and breathed a sigh of relief. His surgery nurse came into the waiting room to get us and we walked our baby back down to the NICU to get all warm and cozy and clean. He cried the whole way back… which was KILLING me. I don’t think he was in pain… just cold and a little out of it. I’m at least telling myself he wasn’t in any pain. But his cries were so precious and I think I loved him more than I’ve ever loved him before during that time.

Back in the NICU,  Megan got Cameron all warm and cozy and clean and then we came in to see him. He looked great. We told him how much we love him and proud we are of him. We saw his incision and then gave him a bottle. He did SUCH an awesome job.

The next day, he was struggling to take some of his bottles because he was just so tired. They seemed a little concerned, but I knew he would be fine and that he just needed a little extra rest. I was right. Within a few hours he was taking all of his bottles and his breathing was great. They were comfortable enough to start weaning the oxygen a little the day after surgery.

We’ve been told over and over again that he will be coming home on oxygen. Well, yesterday afternoon, they turned off Cameron’s oxygen. His breathing has been fast at times and they are watching him, but so far so good. I’m SO excited about the possibility of bringing him home without oxygen. First, it’s one less thing to worry about here. Second, I’m so excited I get to see his whole face with no tubes or tape. Third, and most important, it means his lungs are getting healthy. He has overcome so many obstacles and he never ceases to amaze us.

So, I said the end is near. Tuesday. 2 days from today. Tuesday is the day Cameron is scheduled to come home. Tuesday is the day that I will leave the hospital with the rest of my heart. Tuesday is the day that I will finally feel complete and be able to have my family at home where they belong. Tuesday.

I’m so excited to blog about his homecoming. I’m hoping I will be doing that within the next couple of days.

Violet is doing great at home. She slid right in and fits perfectly. I have no doubts that she’ll show Cameron the ropes and always be looking out for him. I can’t wait to watch them grow and thrive. Every day with them is a blessing. I look forward to every single second of the rest of my life with them.

GO, CAM, GO!

Okay. I’m getting close. I’m getting close to not being able to do this anymore. Having Violet home is absolutely amazing. However, my poor little girl is SO incredibly constipated because of the Neosure. The only way we could get her to go is by using a little liquid glycerin suppository. Tonight, I have done everything I can to try to help her out and all I can do is watch her struggle. It’s so sad. Our pediatrician wants to make sure she gains weight at home before he switches to the lower calorie formula… right now we are using the recipe for 24 cals. Violet’s little body does not seem to like this very much. And then there’s the fact that Cameron’s still in the hospital and we aren’t sure when he’s coming home. If all goes well, it should be soon.

Dennis has been sick so he hasn’t been able to really enjoy Violet being home. It sucks because we waited for this time for so long and now he has to wear masks and gloves around her. We know it could be worse, though, and we are so blessed that she is home.

My sweet Cameron will undergo surgery, yet again, tomorrow. He is going to get his hernia repaired. I know it’s a very routine procedure, but that means nothing when it’s your baby. He’s doing very well with his breathing and his feeds. He had his feeding tube pulled yesterday! We are so proud of him! I’m so scared that all of his hard work is going to suffer a setback because of the surgery. I have faith in my strong little boy, though. He’s come so, so far from that 2 lb 10 oz baby. I know he’ll recover… I just hope it’s very fast.

2 days after his surgery he is going to have his carseat challenge. It’s almost time to come home for Cameron! We are so excited and so ready for our family to be complete. Most likely, Cameron will come home on oxygen. I really hate that. I want to take the tape off his chubby, little cheeks and just stare at him. I want him to be able to breathe free and clearly without any help. With that said, again, I know we are lucky. Our babies have overcome every obstacle they were supposed to. All the need to do is continue to work hard. I still feel so guilty that all I do is ask them to be strong and fight. They were and are so little and didn’t deserve any of this. I wish more than anything I could take their pain and their struggles. I would do anything to protect these babies and I so wish I could have. I’m not over delivering early. I don’t think I ever will be. I feel like I owe them the world for what they’ve gone through. I asked them every single day to get big and strong and to fight for their lives. They’ve done so amazingly. I know now that I will never doubt their abilities. If they could do what they’ve done the past few months, then I know they can do absolutely anything. I’m so, so proud to call them my babies… my miracles.

As for Cam’s surgery, I will keep everyone updated. Thank you for all of the care and concern. Violet sometimes sings “Go, Cam, Go!” to the tune of “Go, Cubs, Go!” to pump him up for things. Maybe you could all sing a little bit for Cam tonight and help get my baby through his surgery!!!