Day 52

Sunday was a good day for Tucker. He has been losing weight for about a week now. Last Tuesday he weighed 3 pounds, 9 ounces, and today he weighs 3 pounds, 3 ounces. The doctors and nurses are not too worried about it, though, b/c he has been through so many vent changes that his body has been working too hard to really gain weight.If he loses weight again today, then they may move his calories up to 28 (from 26). The good news is that they have been slowly weaning his vent support. Yesterday morning, they moved him down to a rate of 30, then last night they moved him down to 25, and I just got a call saying that they are moving him down to 20. This is the lowest he has ever been:) When they get down to around 10, they come off of the vent. Then he would breathe on his own, but he would still be on oxygen for a while to make sure that he breathes well. Last night, I got to hold Tucker again. It was so nice b/c he was awake the entire time. I got to the hospital around 8pm, which is when they usually take a blood gas (they prick his heel, then collect the blood that drips out, in order to check his levels of oxygen and carbon dioxide in his blood). They had not taken his blood gas, though, b/c he was in a bad mood. His sats were down, so the nurse asked me to touch him and calm him down. I put my hands on his head and back and talked to him, and he calmed right down. They took his gas, and of course he got mad again-getting your heel pricked is not fun. So then he calmed back down, and seemed to be asleep. I asked his nurse if I could hold him, and she said if his blood gas was okay, then I could hold him. His blood gas was actually great (they even moved his rate down), so the nurses and I got ready to move Tucker. They wrapped him in his blankets, moved all of his tubes, and put him in my arms. Right away, his sats dropped. It turns out that the ventilator tubes had gotten a kink in them, so the air was not coming through. They had to detach it and handbag him so that he could breathe (this means that they manually put air into his lungs-the nurse stood next to him and pumped the air in) so that they could figure out what was wrong. Then they fixed it, and everything was okay. It actually wasn't even scary b/c Tucker seemed so peaceful the whole time, and both nurses and the RT were right there the whole time. Tucker woke up, and he was awake for the 35 minutes that I held him. The nurse dimmed the lights so that they wouldn't hurt his eyes. It was such a nice time for Tucker and his mommy! He looked up at me and listened to me tell him stories about his family. He makes the cutest facial expressions, even some "smiles." His sats stayed fine the whole time, and even went up. His temperature was also high-the nurses' main concern was that it would drop since he was outside of the isolette. I actually thought he felt kind of hot. The nurses said it was normal-99 degrees. The nurses did not give me a time limit, but after about 35 minutes, his sats started to drop, and he was falling asleep, so we put him back in his bed for the night.I told him good night and went home. Hopefully his vent settings keep getting lower, and hopefully they stay that way once his steroids end. He will still get steroids for ten more days, then we'll see.

Day 50

Today, Saturday, July 15, Chris and I held Tucker:) We called before we went to the hospital to see how he was doing. The nurse said we could hold Tucker b/c he was having a good day. When we got there, a RT was suctioning his breathing tubes. She said "the rumor around Pod 8 is that yall are holding Tucker today," well, that was a true rumor. Chris took his temperature. Then his nurse wrapped him in his blankets to keep him warm for his first trip outside of his isolette. Then she pulled up a rocking chair, I sat down, and she handed him to me. I held him for about ten minutes and talked to him. Then Chris held him for about ten minutes. He looked so small! He looks bigger in his box, I guess b/c he is by himself. He looks so much smaller when we held him. He slept the whole time, and his sats stayed up, so it was a success. The nurses watched us, and they said if he acted up (had trouble breathing or was fussy) then we'd have to put him back. But he did fine the whole time, and he pitched a fit when the nurse put him back in his bed. He was MAD. He kept trying to move around, which he really can't do since he has so many tubes. So then I patted his butt and sang him a song, and he calmed down(don't worry, I did not sing too loud-I'm not one of those embarassing moms-not yet). We took a bunch of pictures, and we printed them out already to show everyone. I'll put them on his website soon, hopefully.

Day 49

Tucker is 7 weeks old today! It is Friday, July 14th. Tonight Rachel and I went to see Tucker take his bath. The nurses really just wipe him down with some wet wipes to keep him clean. His nurse let me bathe him tonight. It was the first time I gave him a bath, it was pretty easy. He still does not like his bath, though, even when his mommy bathes him. He must like to stay dirty (not that he gets too dirty in his isolette). Then Rachel and I just sat by him and watched him sleep. After we were there for a while, a doctor and RT (respiratory therapist) came in and told us that Tucker was changing to the conventional vent! Rachel said "oh good, can Leigh hold him right now?" They said no, not yet. We had to wait to see if he does well overnight before holding him. Rachel told the nurse to definitely tell the daytime nurse that Chris and I are going to hold Tucker, so give them a warning:)

Day 47

Sorry I haven't posted lately-I am such a lazy mom:) Well, a lot has happened in 10 days. For starters, Tucker weighs a whopping 3 pounds and 9 ounces!! What a cow! I think he hit the 3 pound mark last Thursday, and he has just kept getting bigger. we might have to put him on a diet (just kidding, of course-they might actually increase his calories since he eats so well.) So Tucker has taken several steps back with his breathing. Actually, he is back on the oscillator at pretty high settings-back to the beginning. He stayed on the traditional vent for six days after the steroids ended, so he worked on his own for awhile. He just wasn't ready. He went back on the oscillator Saturday night.He is starting his third round of steroids tomorrow-this time, for ten days, so we'll see how he does. He is also starting some antibiotics to help with the inflammation in his lungs. He still does not have any sign of infection, so that's great. He will also be on some diuretics for awhile to get the fluid off of his lungs. He had been requiring a little more help from the ventilator every day, and on Saturday afternoon, even the highest settings weren't enough to keep him happy. They even took away his food on Saturday night and Sunday so his body wouldn't have to digest anything. They fed him with his IV fluids during this time. I was upset b/c he likes his food! But it's okay, he is doing a little better, so he got his food back yesterday. Because of Tucker's weight, they may start him on bolus feeds soon. That means that instead of being tube fed continuously, they would just give him the entire amount every three hours. Right now, he gets 8.5 ml per hour, and it flows straight into his tummy all the time, a little bit at a time. So instead of that, he would get 25.5 ml all at once every three hours, which isn't quite as much as a full ounce. As he gets bigger, his food intake will get bigger.This is to teach Tucker that you don't get fed all of the time-you have to wait until meal time. Also, to teach his tummy to take in larger amounts of food at once. That way, once he's off the vent, he can take his bottle. When he gets his bottle, he has to learn how to suck, swallow, and breathe all at once. But hopefully by then he will be used to his new bolus schedule so he won't be too hungry. Tucker had his eyes examined the other day, and everything looks fine. Also, he had another brain scan, and that looks fine as well. Really, everything's fine, except for his breathing.Tucker received a visit from the pulmonologist today. The pulmonologist specializes in babies with breathing problems like Tucker's. He pretty much agreed with the treatment the other doctors are giving Tucker, though, so not much news.The real news is that the doctor told me we could hold Tucker while he's on the traditional vent. We just can't hold him while he's on the oscillator. So Tucker was on the trad. vent for ten days, and we never held him. We have been told again and again that we could hold him once he was no longer on any vent. So, that was a missed opportunity. Hopefully he will be back on the regular vent pretty soon and then we will hold him.

Days 36 and 37

Tucker is doing so well:) On Friday, the doctor switched him to the traditional vent, and they have been weaning him ever since. Switching to the regular vent is great, but we were worried about how he would take it. He started at a rate of 40 (which is how often the machine pumps breath into his lungs), and Friday night they moved him down to 30. This morning (Sat), they moved him down to 25. The really good news is that he is breathing about 60 times a minute or more, which means that he is doing most of the breathing on his own-he must like those steroids. He also picked up two ounces-he's at 2 pounds, 10 ounces, and the doctor moved his food intake up to 7.5 ml an hour.The best part is that he is not shaking anymore. For those of you who have already met Tucker, you know what I mean. His chest always vibrated b/c of the strength of the oscillator. We touched him mainly on his feet and head b/c the middle of his body vibrated too strongly-if you left your hand on his middle, it would actually put your hand to sleep.So now, he just breathes normally. Chris and I didn't realize that it would make such a difference, but it does. We each rested our hands on his back (he was on his tummy), and we felt his steady, normal breathing. It was wonderful-it might sound strange, but he feels much more like a baby now. The oscillator made so much noise, and we didn't feel as comfortable touching him. We stayed for a long time and just looked at him. I guess it was kind of like the first time parents get to hold their baby-that's how we felt. I'm sure holding him will be even better, though. Then when we left, we were sad b/c he did not come home:( But we were also very happy b/c he was doing so well-we have a lot of mixed feelings. Once we can hold him and feed him, the nurses will have to kick us out to get us to go home. Today, Tucker had many visitors-Mom, Dad, Nana, Nanny, Lauren, Dylan, Gina, Aunt Kim and Uncle David. Morgan wanted to go in, but she's only 6, so no such luck. She told Aunt Kim, "can't you tell them I'm 14?" Not quite. I'm sure the kids really want to meet him. Brycen named her baby doll Tucker, and she said Tucker's coming home when he gets big like her. She hasn't agreed to share her toys with him, but I think he'll have enough of his own. Please keep praying for Tucker. I'm sure he is anxious to meet everyone:)