I don't think that I can accurately describe the feeling of total helplessness that you feel when your child is in the Neonatal Intensive Care Unit. You can't do anything to make the time go faster. You can't change a thing about what is going on. The emotional roller coaster is exhausting. My mind is currently going a million miles an hour and I can barely hold a thought for more than a few seconds. I have over a million things to do at any given moment, so it feels like a constant battle to keep my head above water. We were up at the hospital until late last night and Carrie is getting ready to head up there again.
We had a really great week. My mother was here and got to meet the boys for the first time. She got to hold them and bottle feed them. That was very nice and things went very smoothly. Earlier I described the whole thing as a roller coaster and that's exactly what it is despite how cliche' the roller coaster analogy may be.
First of all, during the past week we have reached some excellent milestones. All of the boys are receiving one bottle feeding per day. They are very good at bottle feeding. Feeding them their bottles is really fun and exciting. They work so hard to suck, swallow, and breathe all at the same time. After a bottle feeding they are exhausted. I think it's like running a marathon for them. They must go back to bed. They are fed 8 times in a 24 hour period. Each feeding they receive around an ounce of milk. All three of them are gaining weight.
This brings me to the next milestone. Cash was the first to get out of his isolette. The isolette is what they have been in since the day they were born. This unit maintains a constant temperature and helps them maintain their body temperature. When they gain enough weight, they can move onto a regular crib. This means they are out in the open and forced to regulate their own temperature. Mr. Cash was the first to do this. He is totally off any sort of cannula or breathing support. Cade quickly followed and they put them together for the first time.
This was awesome. I was at work and Carrie sent me some pictures. Here is the very first picture of Carrie and two of her boys. Cade is on the left, and Cash is on the right. Zane was still in his isolette at this point.
The boys got very excited and started laughing and Cade was making noises like he was trying to talk to Cash. Cash would giggle in return. I think Cash knew exactly what Cade was saying. Here is another one of them. Cade is in the black hat.
Zane got out of his isolette yesterday. We didn't have time to take any pictures or put him with his brothers, but here is Mr. Zane.
After all this celebration and excitement, the roller coaster dropped. On Tuesday they discovered some puss filled red spots on Zane's cheek and ankle. They could be from the tape and his ID band, but we don't know yet. They took cultures and we have to wait and see. He also was having trouble maintaining his temperature, so he is back in the isolette as of this morning. It was a bit much too soon for Zane.
Last night, we went to give Cade his bottle, and his stomach looked pretty large and full. He wanted nothing to do with his bottle and was very lethargic. We called for Dr. Cipriani, and she ordered a battery of tests and X-Rays. This part was absolutely the worst part.
The X-Rays were painless of course. However, the needles to draw blood and insert an IV drew screams from Cade and tears from Mom. I sat in a chair and tried to read my book. I would look at Carrie and see the tears and listen to my boy scream bloody murder. At least he was screaming. This is a good sign. If he wasn't, that means that he was really sick and didn't care what anyone did to him. He was fighting and that is a good thing. However, the sound of your child screaming in pain may very well be the worst sound on earth. I have heard some bad bands in my life that I thought would kill me, but I would rather listen to an entire concert of every bad band in Texas than hear a second of any of the boys scream. Combine that with Carrie crying and I can't describe the feeling of helplessness. I have always handled trouble and I am a problem solver. Look at a situation. Figure out a solution. Act on said solution.
Not in this case.
Sit there and feel helpless. It is very hard to find the veins of a premature baby, so he had to be poked quite a bit. I tried to give him a pep talk.
Me: Come on boy. If you are going to be born early, you need to expect to get poked on a bit. There is no crying in baseball, and there is no crying in the NICU.
I said the words, but my heart wasn't in it. After a while they got the samples they needed and Carrie held him for a long time. He calmed down quite a bit and went to sleep. His X-Rays showed that he just had a lot of air in his stomach and intestines. This is normal with premature babies. He just started on the bottle, and took in a lot of air while he was doing this. Now he is back on an IV to feed him and one for antibiotics. He is also back in his isolette. One step forward, two steps back. I just heard from the nurse and the X-Ray from this morning reported nothing more than air, but less of it. There is a tube down his throat to remove this air.
Cash is rolling along. He is still in his crib and maintaining his temperature. His weight last night was 3 lbs 14 ounces. Zane is 3 lbs 10 ounces, and Cade was 3 lbs 12 ounces on Monday night, but we didn't get his weight last night because of all the excitement.
As a whole they are doing great. No real unexpected problems. They push the boys to do whatever they can, and back off when they can't handle it. With Zane and Cade we are just backing off a bit. This is all part of the process. The process is painful, frustrating, scary, exciting, happy, horrible, sad, maddening, and very joyful. We are on a rough trail and we are seeing all kinds of country and running in to all types of weather. The destination is home and we will get there.
Here are some other pictures from the past week. Thank you for all your prayers and support. I'm sorry I don't have anything funny to say. Next time I'm sure the blog will be hysterical. Let's hope.
Here is Cade.
Here is a picture of Mom feeding Zane.
Here is one of Cash.