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!!!

High to Low

I’m sick right now.  I don’t have the flu. My head isn’t hurting. No infection. No virus. The only thing that is aching is my heart. When my son came off the ventilator, it was one of the happiest moments of my life. I told him that he would never have to go back on. Now, his little body has made a liar out of me. Today, the doctor told me that Cameron has a hernia and will need surgery. I haven’t talked to surgery, yet, just the doctor and our nurse. I know it’s a common problem for preemies and I know that he will recover, but it makes me so sick to my stomach to think of my sweet boy back on the ventilator and IV fluids and in pain. I thought we were done with all of that. It was a blow and it hurts.

I keep picturing him back on the vent and my eyes just keep filling with tears. I think about surgeons cutting into him yet again and leaving a scar on his tiny body. This poor angel is still supposed to be INSIDE of his mommy and instead he is moving onto his next surgery. It’s not fair to him. I can’t help but feel incredibly guilty. No one wants to see their babies in pain and it’s breaking my heart to think about how much his tiny little body has gone through and is going to go through.

Cameron is strong, though, and by the time he gets to surgery he’ll be even bigger and stronger. I have to have faith that he will put up a fight to get that vent out after surgery and he’ll be so hungry for a bottle that the nurses will have no choice but to get that stupid tube out of him.

We were on such a huge high because Cam took his first bottle yesterday during a feeding. I was nervous about it, but he did awesome with it. Today he took two more bottles while I was there. He’s eating like a champ and he was down on his flow and percentage of oxygen. I definitely went from an extreme high to an extreme low. This sucks.

I’m tired of the NICU life. I know it could be worse and I know my babies could’ve had a much rougher road. But, that doesn’t make things much easier. I’m so proud of them and so very, very ready to take them home. I miss them so much when I’m not there. It feels like I will never get to hold them in my arms here at home. I know that that’s not true, but it really feels that way. At this moment, I would give anything to be listening to Violet make her cute little noises and watching Cameron’s eyes light up when he hears me talk. Those are the things I long for every second that I’m not with them.

I know my miracle babies will continue to make me proud. I just wish they were doing it from our home.  I also know they are where they need to be right now. I just wish they were where I need them to be…