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.

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!