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!