Frustrating

Tucker's rate just keeps going up-it went from 40 to 50 on Saturday, and it went up to 55 today. We were never close to having him home, but we thought we were closer than this! He is four months and two days old. Another baby just turned one year old at the hospital-if we are still there at one year, Lord help us all. And he is getting so cute these days! It is hard to leave him. He woke up for me yesterday for an hour. He is starting to focus his eyes on things-not just letting his eyes roll around. He likes to look at his vent-he stared at it the whole time-apparently, he loves his vent. It has bright flashing colors-much more exciting than looking at mommy It is easier to hold him on the trach-but it's still not easy by any means. Yesterday was the first time I actually took him out of his bed-a nurse did not have to hand him to me. She watched the whole time, though, just in case. She was very nice-I think most of the nurses are too nervous to let a mom pick up a baby with the vent. They'd rather hand him off. Well, not much else-Tucker weighs 8 pounds, 11 ounces, and he is finally out of preemie clothes and into newborn clothes. They moved his calories down from 27 to 24-he is getting too chunky too fast! I am in the process of finding him something to wear for Halloween. Nothing seems cute enough.

Day 118

Tucker is doing well. The doctors actually mentioned the word "home" the other day. Tucker will be home around Christmas time (hopefully), but the fact that they want to meet with Chris and me to make a "plan" is so exciting. We will meet with the pulmonologist (lung doctor-Dr. Thomas), b/c he is the one who will decide when Tucker can come home. Also, he is in charge of choosing Tucker's nurses for at home, and getting all of his equipment in order. Dr. Thomas will see Tucker for as long as he has the trach-about two years. Today the doctor moved Tucker's rate down to 40 breaths a minute. They cut back on his blood gas tests-only once a day instead of twice a day. They are going to try to wean Tucker more aggressively-moving him down and seeing how he deals with it. A rate of 40 is a pretty high rate, so hopefully he weans down soon. The eye doctor saw Tucker Tuesday-his ROP has regressed-yay! So he only has to get an eye exam every 4 weeks instead of every 2 weeks. His eyes are fine. The occupational therapist is going to try to nipple feed Tucker today-let's see how he likes his bottle. He used to love it, so our hopes are high. I have gotten good at feeding him via g-tube, so he'll get fed either way. Last night, his nurse said, "you changed him and fed him-why am I even here?" She was kidding around with me-she knew I wanted to help out. Feeding him in his g-tube is actually much easier than feeding him in his bottle. Tucker is asleep everytime I go to see him! I asked his nurse what would be a good "awake" time, and she said feeding times. So I went twice at feeding times, and he slept straight through my visits and the feedings. He is so bad! Of course, sleeping is wonderful b/c it helps him to grow. He weighs a little less than 8 pounds-he lost about 8 ounces after surgery, and he is slowly gaining it back. He looks longer and slimmer-more like Chris, really. About the house-we bought a house last Friday! So we are excited, except there is so much left to do on it (it is a 50-year old house). We have painted walls, pulled up carpets, ripped out the bathroom fixtures, and more. This weekend we are putting in laminate wood floors and hopefully getting the bathroom together. I think Tucker is getting better b/c now he knows he'll have a cute house to come home to. He is getting excited-I can tell. We joke that we have to be nice to Tucker, or he might decide not to come home. So we'll see how everything goes.

Almost fall?

I have been reading all of your blogs about the end of summer and beginning of fall. This is my first fall season with a preemie, and he'll likely be in the hospital for most of it-but I'm trying to understand your fear of the fall and winter. Of course, in Baton Rouge-you would never know fall was close. It is so hot!! And it probably will be for a while. We have maybe a week or two of fall and winter-so that must be a blessing for preemies Sorry to have been so grumpy lately-usually seeing Tucker smile makes me so happy, but he has been sedated lately, so he has not been awake So once he is back to his old self, I'm sure I'll be back to my old self. I do LOVE the ICC! It is so much more like home! No loud noises, and we can pull the curtain around our "area" and sit in a recliner and just read. I am going to start bringing books to read and my laptop so that I can wait around until Tucker wakes up or it's time to take care of him. I want to start taking more responsibility-the nurses usually do everything, even change his diaper, unless I jump on in there. I want to take care of his trach and feed him asap. I also just wanted to mention my grandparents. All four of them have had such an impact on who I am-I had so much fun with them growing up-playing outside, riding bikes, shopping-I especially always loved going on trips with them. I am extremely spoiled by them-at family gatherings, I hug my grandpas before I say hello to my parents All four of them were at my wedding in March of 2005, my college graduation in May of 2005-and all four of them were there with us during Tucker's surgery. I am so blessed, and I want Tucker home so they can spoil him, too! We need to get pics with Tucker and all of his great grandparents. I will update about Tucker once I see him-once his trach is out of his face (it's in his face so that it heals exactly straight), I'll take some pics of his beautiful face!

The Awakening

Tucker woke up yesterday. They stopped his Pavulon around 3 pm, and he woke up at 530. His nurse Lindsay called us to say that he was awake and being really happy and quiet. We had already visited him at lunchtime, but he was asleep. So we jumped in the car and headed over to the hospital again. When we parked, Chris said, "hang on a minute." So I sat there, and he ran in! Literally, he ran in the parking garage-he must have looked like a nut-a grown man running around. So then I caught up with him, and we scrubbed in at the desk. We went in to see him, and he was looking around and opening and closing his mouth, like "wow, there's no tubes in here anymore." We talked to him a little bit, then I put his paci in his mouth-he latched on and wouldn't let go. Within a few minutes, he was back asleep. Chris said it's b/c I tell boring stories. I think Tucker had just been awake for awhile already. Linsday said they checked him in and changed his trach ties-and he just laid there quietly the whole time. She said this is not the same baby as before. He was so content. He still does not look quite like himself-very puffy from the meds and from being still for so long. Also, putting on clothes will help-that might not happen for a few days. Maybe he will be awake for a little longer each day so we can play with him and talk to him. In a few days we might hold him. So let's see what happens.

And Now We're Home

Chris and I made it in to see Tucker at about 4 pm today. He looked much better than we thought he would, but it was still kind of. . .well, creepy. Tucker was not puffy or swollen, and since the nissen surgery was laproscopic, he did not have any big incisions. But he was given pavulon to make him lay still, and it was strange to see him without any expression or personality. We could see his whole face, though, and now we can't decide who he looks like. We had always said that he looked just like Chris, but that's especially true when he makes certain facial expressions. So we'll have to wait until he's off of the meds to see how he reacts to having his face free of all of the wires. We were okay during the whole thing b/c we really didn't have time to think about it. Altogether, we had 20 people in the waiting room for about 6 hours. The nurse came in every hour to update us on Tucker's progress, and she asked me "are all of those people your family?" and I said "yes, they're with us." At one point, there was one other mom in there. The waiting room phone rang, I answered it-they asked for Mrs Wheeler. I looked at the other mom and said, "are you mrs wheeler?" everyone laughed-of course she was! everyone else was with us! Tucker's cousin Brycen was there-she's 3 years old, and she entertained us all day. She had made Tucker a picture for his bulletin board-she has never met him since she's too young to visit him, but she says "Tucker's coming home when he's big like me." My FIL took us all to the cafeteria and bought 3 of everything-we ended up with tons of extra food at the end of lunch. I don't think I have let it sink in that my baby had actual surgeries today. But he is fine now-onto the hard work of learning how to take care of him so that he can come home!

Out of Surgery

Tucker is out of surgery. It all went very well. We are waiting to go in and see him. Thank you for all of your prayers. We can't wait to see him-let you know how he is later.

The Morning

I have butterflies in my stomach. Tucker is going to have his surgery today. We are almost ready to leave to go visit him. Our entire families are coming, so the waiting room will be packed. My sister Meagan (Tucker's godmother) came with me last night to see Tucker. She has to work today, so she can't come. Tucker was wide awake and so cute for his nanny! He made his frog/squeak noises around his ET tube, and he *smiled* a few times. She held him-he is so loved :) My husband has been sick with congestion and sinus pressure, so I had to take him to the afterhours clinic last night. He got a steroid shot and a Z-pack of antibiotics. Just like Tucker! Tucker has been on decadron three times, and he has been on the Z-pack for over a month. My husband had the most upset stomach last night, and he had eaten with the medicine. He also had cold sweats all night. What if Tucker feels like this? He is generally a grumpy baby, so we are happy when we catch him in a good mood. Maybe that is why-his medicine makes him miserable. Let's see how today goes.