The LT 1000

The pulmonologist said Tucker can move to the home vent today! He might not actually switch today, because they don't think they have his in stock (which I could have sworn they told me they had last week!), but the fact that he is able to move at any time is very exciting. The Doctor's notes: "Tucker can move to the LT 1000 once it's ready. I think we'll have some adventures." Well, I agree-every little change is adventurous with Tucker, so why should a big change be any different? Other than doing so well on his breathing (well for him-he is still on the vent), Tucker has a lot of other things going on. He had a Happy Thanksgiving. Chris and I went to visit him and played with him for a long time. When we got there, Tucker heard our voices and woke up out of a dead sleep. Chris held him for about ten minutes, but I was anxious to get him on the floor mat to play with his Boppy gym. Tucker spends most of the day in his bed-being lazy-so I decided he needed some exercise to keep him on the developmental track. Well, he disagreed. Chris said we shouldn't be surprised-he's our kid-why would he like a gym? We put the mat and the blanket down, and when we put Tucker down, he screamed like we were beating him. Seriously. I was worried that someone would think we were hurting him. We changed his diaper, suctioned him, and still, he screamed. Chris finally picked him up, and that was it-the crying stopped. I said, "of course-we let him have his daddy for ten minutes, then he put him down-what mean parents!" He probably thought we were going to put him down and leave him-or he is just spoiled. Lately, he is getting very smart. He knows that when we put him in the bed, we are leaving him. We used to let him fall asleep before we left, that way he wouldn't actually watch us leaving him. However, he'd fall asleep with visitors, and wake up to an empty room-this did NOT make for a happy Tucker. So we've started putting him in his bed with toys, or to look at his mobile, and then leaving. So now he's on to that, too. While we're there, he REFUSES to go to sleep! Yesterday, my mom and I were there, and his eyes were wide open the whole time. After his second feeding, I had to rock him back and forth until he fell asleep. He needed to fall asleep-he was so cranky! Yesterday, Nana bought Tucker an exersaucer for Christmas, and she brought it straight to him-she said, "he doesn't know when Christmas is-and he needs to exercise!" He really does-we think we have a lazy baby on our hands. Tucker is behind in his physical development-most three month old babies do more than him, and he is technically considered a three month old b/c that's how old he "should" be. So we tried to put the exersaucer together, but I didn't have a screwdriver. I'll have to bring one-but it's okay that he didn't play in it-I think he'll like it as much as his Boppy gym until he's a little older. Then he'll love it. It looks like so much fun. However, he is so smart for a three month old baby, which I guess is because he's been around for so long. He's considered geriatric in the NICU. All of the nurses visit him to see what cute things he'll do-they're not used to having older babies that do stuff. Tucker is starting to have separation anxiety, and they technically aren't supposed to have that until around nine months-what a confusing child! Also, Tucker know Christmas is coming. For several weeks now, he's been a much better baby. We always joke that he's being good b/c Santa is coming, and he knows he has to be good to get some presents. We think the real cause for this is that we quit nipple feeding him. It was really too hard on him-it kept him stressed out and tired. Ever since he quit, he's been much happier. We bought him multiple Christmas outfits-one says "mommy's little present" and one says "bah humbug." The third one, his real Christmas outfit, says "baby's first christmas" and has matching hat. He took Christmas pics on Saturday-they are so cute! He also listens to the Christmas radio station all day-he loves it, but he cries when the commercials come on. Then when the music comes back on, he quits crying. B-A-D! I took Monsters Inc to the hospital on Saturday, and Tucker and I watched it. He watched the whole thing-or at least, he sat still and pretended to watch it-he has a very good attention span. We watched the new Grinch yesterday, and Baby Einstein-except I mainly watched the movies and Tucker mainly watched me-I never knew I was so fascinating-having a child gives you a big ego. We are going to start taking him more movies-maybe we'll watch Shrek this weekend. Since he is getting on the home vent, we will be one step closer to home-we still don't know exactly what that means-weeks, more than likely months, and then he can come home and crack us all up.

What about Dad?

I've been thinking a lot lately about how Tucker's premature birth affected my husband. Tucker is our first child, and becoming a dad the way Chris did was not easy. However, he did not realize that he was missing out on anything "normal" until a few weeks ago. When I called Chris to meet me at the hospital, I "knew" what was going to happen. I had blood pressure of 140/100-I knew they weren't going to let me go home. Chris did not want to meet me at the hospital-he was in the middle of putting together Tucker's furniture, and he did not understand why my mom couldn't just take me and then bring me home after. (My aunt had a 32 week baby due to preeclampsia, so I had an idea that could be what I had, too, and that I would have to stay in the hospital for weeks until Tucker was born. Of course, I just ended staying about 4 days, and then Tucker was born. Chris had no clue.) When I was checked in and checked for protein in my urine, Chris just sat there. He did not understand anything that was going on, or why my mom and I were so upset about it. The doctors all said that they delivered babies at 27 weeks all the time, and Tucker would be okay-Chris thought that meant everything was "normal" and "fine." He did not understand that I was losing 13 weeks of my pregnancy and how robbed and horrible I felt. When Tucker was born, Chris was on cloud nine. He was a daddy to a relatively healthy baby boy. We never had a moment in Tucker's life when we thought he wouldn't make it. I know that many of you were given bad odds for your children's survival, and suffered through many diagnoses. Thank God, we never had a time like that. Tucker's only real problem has been his lungs, and the neos warned us of that before his delivery, so Chris still did not see the problem. He went to visit Tucker everyday and told him all the fun stuff they'd do when he came home. I didn't really push Chris to understand what was going on, b/c he had to go to work-we had bills after all, and I thought if he got too upset, he wouldn't be able to function. The day we found out that Tucker was not coming home on his due date was a turning point. We knew that "normally" (if there is a normal in all this), preemies went home around their due dates. That's when my little cousin went home. As long as Tucker came home on his due date, Chris and Tucker had never really missed out on any time. Just me and Tucker. Chris all of a sudden became very protective of Tucker, and in a bad mood all of the time. I had been in a perpetual bad mood, so I said, finally-you get it. But I was so sad! Part of me wishes he never understood it, because then I knew that he lost the innocent happiness that I lost when Tucker was born. Many of the feelings that I have, I have dealt with, at least partially-Chris just started dealing with them. We went to a party for my friend's two year old last week, and Chris was so upset-he said Tucker should have been there, and how come our friends got a healthy baby and not us? Of course, he wouldn't wish a sick child on anyone, but... still??? I said, welcome to my world-it sucks! I am glad to talk to him, but again, I wish he didn't have to go through this! For the last few months, he barely goes to see Tucker. After work he is just too tired, and it is SO HARD to go up to the hospital. It's a 45 minute drive, which is nothing when you're going to see your child, but it just reminds us everytime that Tucker is not home. I told him, "one day, I'm going to say, do you want to see Tucker? And all you have to do is go into his bedroom!" He liked that. The other day, Chris said, "Oh, my God-I am 23 years old-that's how old my dad was when I was born. And I thought he was Superman! Tucker's going to feel that way about me." And I said, "hello-Tucker's 6 months old-you JUST thought of that!?" I've always heard that babies are REAL to the mom when they are pregnant, but not to the dad until they are born. Well, I guess for preemies, sometimes babies aren't REAL until they're home. Now all of a sudden Chris is getting the superdad complex. He already has the T-shirt-seriously-he bought it for himself on father's day. Tucker LOVES Chris-it's so cute! He looks away from his vent every once in a while to look at me, but when Chris is there, he forgets about the vent. It is the cutest thing! And he is doing so well with the trach care. I knew Chris would be a wonderful father when I married him-but he has not had much of a chance to prove that yet. Lately, though, he has been doing great-he doesn't let me or the nurses help him move Tucker or take care of Tucker b/c he wants to do it himself. And he said once Tucker is home, he wants me to work on Fridays (his day off) so that he can spend time with Tucker and take care of him by himself. Us moms-always in the way!! So, I know most of us here on SHARE are moms. I just wanted to remember the dads-especially Tucker's dad. He is dealing with all of this the best that he can, poor thing. I think the healing will really begin when we get Tucker home

Turkey Time

Tucker is at a rate of 28, and an oxygen percetage of 28% this morning. He weighs 11 pounds, 6 ounces, but he looks thinner b/c he grew an inch this week! We are excited that he's getting taller-we want him to take after daddy, not his 5 foot tall mommy. So much has been going on. Chris and I have changed the trach together TWICE! With no outside help! Of course, the nurse and RT were right there, but we didn't need them. Also, our moms came in to see the trach change so that in a few weeks they can start changing them. Chris and I have to be supergreat at it first, though, then we'll hand him over. My sister went to Louisville, KY to visit our cousins, and they went to a MOD auction. She said that there were toddlers modeling-one little girl had a trach, and there were boards or something telling their stories, along with little plastic babies of the size that they were born at. She was so excited, b/c she saw the other babies like Tucker who are now growing up. It let her see the light at the end of the tunnel, I guess, and those kids looked so happy. Tucker is still on antibiotics for his trach infection-it pretty much went away, but he has to finish his meds. They'll finish in about a week, and then he is getting transferred to the home vent! That's good, but he is in LOVE with his nice vent-it has the waves that show his breathing patterns, and he stares at it all day-when you turn him around, he cries until he can see it again!! So I think he'll have an attachment disorder when they move in the home vent-it has no lights at all He better get over that, and use that attachment for his parents! So, once he's on the home vent, maybe he'll actually come home!! Not before Christmas-we already have our plans for Christmas day. We reserved the hospital TV, and we're going to bring "A Christmas Story" movie to watch it with him. We might buy him one gift, but everyone else is going to buy him so much stuff, so what's the point? He won't have a clue anyways. Sunday at church, the priest was talking about Advent, and how it is very important to have a waiting and preparation season before Christmas. He said waiting helps us to appreciate things when they finally arrive, and we wouldn't appreciate them as much if we just got them easily. My mom and I looked at eachother and laughed. We think we appreciate Tucker A LOT, so we are sick of waiting. Maybe we need to prepare some more for him, but he better start making his way home. We celebrated Thanksgiving last night (the men leave to hunt for Thanksgiving), and we had to say what we were thankful for. I said I was thankful for Tucker-and that maybe he'll be there next year making a mess of his mashed potatoes! Except it will be the winter, so maybe he'll be on lock down in his room at home. I love him SO MUCH! He's such a sweetheart.

Yay for Tucker

Tucker's rate moved down to 30 today We are so scared! The last time he was at 30, it was for a week, and we really took it for granted that he'd stay there! Then he jumped back up to 50, so we are scared. He is only requiring 24% of oxygen right now, and he is satting 95% at the moment (I'm sitting in his new, LARGE room-it is as big as his room at home!). I am just amazed-the better he is, the more we have to lose, so I'm a wreck. We got his trach culture back today-he has some bacteria growing in it, so they'll continue antibiotics for 7 more days. The doc said he should need higher support with an infection, but somehow he needs less support. Maybe he should get sick more often-just kidding!! His fever went away after the first day, so they caught it at the beginning-yay for the nurses! We'll see how he's doing-also, he weighs 11 pounds, 10 ounces, when was my preemie replaced by a monster??

Sad Mommy

I am having such a hard day! I try not to be sad about Tucker, but sometimes I just miss him so much! I work a few days a week, and it's hard to be away from him. But at the same time, i like to work, and I could not stand to be at the NICU all the time. A grandma came into the shop today with her granddaughter-same age as Tucker-the grandma was so happy-you could see the pride all over her face as she took the baby on errands for the day. 5 months old is such a cute age! I forget how strange our situation is until I see other babies the same age as Tucker doing *normal* things-it brings everything back to me, as if to say: No matter how long he's in the NICU, I will never get used to it, even though I *trick* myself into thinking I'm used to it. He might not even use his infant car seat b/c he might be too big once he comes home. And he gets some "firsts" without me-like for Halloween, he got a lollipop-I saw the pictures last night-I could just cry. It is very hard to feel like a mom to Tucker, even though I know I do everything I can for him. I'm still trying to reconcile my dreams of him with the reality of his situation. It's not that I wish HE was different-I just wish he was home! I wish I could see him whenever I wanted to, and that I was taking care of him. I am having a very hard time attending church, even though I LOVE church-have you ever realized how many babies there are at church?? I swear, every week is baptism week. I'll drive to church thinking that I'll pray and feel better, then I end up sitting right behind a screaming baby-wishing that I was holding my screaming baby. When I'm with Tucker, I'm so happy that I forget we're not a normal family. So I'm going to see him tonight, and I'm sure I'll feel much better.

Fever

Tucker has a fever Yesterday, he ran a temp of 99-100 degrees all day-not really high, but he slept all day. He never does that. I spent the day rocking him while he slept. They tested him for just about everything (including CBC, blood cultures, tracheal aspirate, urine culture, RSV wash), and the tests came back that he has some infection, but not a specific one. His trach site looks AWFUL! It is read and very swollen all around his stoma, so we think that is the cause of infection. He is on antibiotics, so he had to get an IV in his arm That didn't bother him nearly as much as the urine catheter-he won't look at his nurse Lindsey the same anymore Since he was so calm, his blood gas looked great and they weaned his rate to 35! His oxygen requirement was only 26%, and he was satting over 95% all day. How sad! He has to be sick to breathe better. He is moving to a new room-that's exciting, we'll be able to really decorate it and stay longer b/c it has a door and everything. I feel like such a nerd being so excited about Tucker's new room, but it will feel more like "home." The sad part is that Tucker's only getting that room since he's been there so long (5 1/2 months). There's only one other baby that is older than him at the hospital. About Tucker's insurance: His lifetime max is $5 million. He is at about $1 million right now, but not all of the bills have come in. His nurse recommended that we just take him off of private insurance and let Medicaid pick up the bills until he gets the trach out (4-5 years), so that he does not hit the lifetime max. And so that we wouldn't have to pay the individual premiums-she said we should save that money for other expenses we'll have for Tucker which will definitely add up-any thoughts?

5 Months Old

Tucker is 5 months old today! He had another scope/bronch today. The doctor put the little camera in his trach, and he found that Tucker's tracheal and bronchial malasia (floppy airway and lungs) is even more pronounced than he thought, but they can't do anything about it. He just has to grow out of it. They did not change anything about his trach-making it longer or thicker, for example. He is also getting a swallow study tomorrow. They are trying to see if he is breathing in formula after he nipples it. This could cause lung problems, and if this is the problem, stopping the bottle feeds would stop the problem. They did a study like this before, though, and he did not have any aspiration. So. . Also, his blood pressure has been high, so the cardiologist is going to check him out. Last night, I brought Tucker's new CD player and his lullaby CD. We listened to the CD and the country station. Tucker is so cute! He looked at me the whole time, even when I was on his left side (he is usually too lazy to look on his left!). So I am so special. When I would move around, or move him around, he would cry until he could see me again! He's not supposed to have separation anxiety for several more months. He is not supposed to be teething either yet, but he is. He's doing some things too early and other things (like breathing), he is very late on. So we'll see. . .one more month until Tucker's 6 month pictures-he gets to wear his cutie outfit from Meredith (although Chris says "men" don't wear outfits-it's just clothes).

Tucker's "Firsts"

Tucker has been having a lot of "firsts" lately. He had his first smile the other day b/c of a reaction. He always smiles, but it's not necessarily when he's happy. He loves looking at his vent-it's like he's watching TV. It has bright lights and it makes noises, so that must be why he likes it. Anyways, the other day, he was laying there looking at it, and the RT turned the screen so she could write down his stats. Tucker made his "sad" face-pitiful! Then she moved it back, and he made a big grin. He is such a mess! Now that he's older, he has "TV time." His first movie was Lady and the Tramp. His nurse said he fell asleep during it, but when she turned it off, he got upset. So he must have been listening to it. He likes to know that someone is there, so he must have thought the movie was some one giving him attention. A big first is the other night I gave him his first bath in a tub! It was so cute. He fussed b/c he was naked, then we put him in the water, and he totally relaxed. He loved it. He sat there for a few minutes, and then we started scrubbing. Of course he did not like that. He is very slippery in the tub! That was Friday night, then Saturday night Chris went with me and we bathed him together. It is really a two person job b/c someone has to hold his head or his whole body while the other person scrubs various parts. I cleaned Tucker's left, and Chris cleaned the right. Well, after that, we were so tired, but Tucker was wide awake-and it was feeding time. So the nurse said it was time to nipple him-he gets one bottle feeding a day-and he has not been doing too well with it. She said I could feed him, so it was the first time Mommy ever fed Tucker. He did a good job-took half of his bottle, which is about the same as when his nurses do it. So he did well! Plus, he looked at me the whole time-feeding time seems to be the only time he'll "let" us hold him laying down like a baby. The rest of the time he likes to be held sitting up. It was Mommy/Tucker love time. Except after awhile I was so tired! I said, "we're supposed to do this every 3 hours?" LOL Chris said, "maybe when we have our next baby, we'll ask the doctor to put a g-button on him, too." LOL just kidding! We want Tucker to eat by mouth, no matter how much sleep we lose. Also, Chris is SO tricked by Tucker's fake cries. We were getting his bath ready, so we had him laying down in his bed-he started crying and making his "i'm so pitiful" face. Chris said, "shouldn't we do something-does he need something" His nurse and I laughed at him. He'll learn. Chris did a very good job cleaning Tucker's trach and his g-button! Yay for Chris-it is so easy to do this stuff b/c you're just taking care of your baby. It's the same as bathing him or changing his diaper. You have to do it to keep him clean, and after awhile, it just becomes another part of your baby routine.

The Results

Tucker's scoping went fine. He was so good today. His gas this morning was 140-WAY high! So they moved his rate up to 60 and his pressure up to 60. He was very well-behaved while he was poked all up for blood work. As long as he had his paci, he was fine. The doctor found that Tucker has a floppy airway which makes it very hard for air to get into his lungs. The vent has to push very hard to get his airway to open up, and then when it opens, all of the air rushes in at once-then after a second, it shuts right back off. So his breathing is not working the way it should-it's a mechanical problem. Once he gets the oxygen in, his body can take it and use it-it's just not getting in there really well. Dr. Thomas said he just has to grow out of it-so, more waiting. He said we'll shoot for having Tucker home for Christmas-but, we'll see. They also put in a thicker trach tube-so his leak is gone. So more oxygen is getting in-his rate went down from 60 to 50. But he is going to be upset when he wakes up and realizes he can not cry or talk to us. He was getting so good at it! Because his trach tube is so thick, I can't change it until they open his stoma a little more. His stoma is the opening for the trach. If I tried, I might push too hard or something-the Dr said he had a hard time getting it in-it's a little snug. Dr. Thomas is very nice. He answered all of our questions-well, the ones he knew the answers to. The main one: "when is he coming home?" no one knows that! He asked "Tucker, when will you be ready to come home?" Well, he didn't answer, so I guess it's a surprise.

Tucker's Trach Check

Tucker's pulmonologist, Dr Thomas, is going to put a scope down Tucker's trach tomorrow to check out everything. Tucker has a pretty big air leak around his trach, and a lot of air is getting up into his nose and mouth. Tucker is supposed to breathe through the trach, not around it. So they are thinking there might be something obstructing his airway. This could be what is causing his rate and pressure to need to be so high-the vent is having to work very hard to get air into Tucker's lungs. This would be great, because it would mean that they could fix the obstruction and that the problem is more of the airway, not so much his lungs. So fix the problem, and his rate and pressure should get lower (they're still both at 55). So we will find out tomorrow if this is the problem. The procedure is scheduled for 1030. Tucker will be taken to surgery, and put under anesthesia, but it is not a serious ordeal. It should just take a few minutes. Then we'll know the verdict. So keep Tucker in your prayers. He fake cried for me today-he is SO pitiful! I held him, and when I put him back in his bed, he made this cute little "please feel sorry for me" cry. What a brat He is getting to be awake for long stretches of time, and he is so spoiled! He has to be sitting up all the time, not laying down-he's too big for that now. He cries and makes a lot of noises-that will probably change once he gets his trach fixed-but I'd love that if it meant he was getting more oxygen. I changed his trach again on Monday-this Sunday, it's my husband's turn. Let's see how he does.

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.

Tucker's New Home(s)

Last night, Tucker was moved to the ICC. I don't know what the letters stand for, but it is the area for babies who are going to be staying in the NICU for a while. It is quieter and away from the rest of the babies. That is good. I've been waiting for them to move him there. They just moved him last night, so I haven't seen him yet-I'm anxious to check out his new place. Also, Chris and I have been looking for a house. We rent an apt right now, and it would not be the best place for Tucker to come home to, I guess. So last night my MIL found a cute little house with an acre of land and lots of trees. We really like it, so we put an offer in for it. We're waiting to see what happens. It will take a bit of work to make the house the way we want it, though. There are some ugly floors in it right now, but overall, the house is very nice. We have been looking for awhile, but nothing ever seemed to work out-places were too expensive or someone else offered more money, etc. So this time it might work out-and the house is near my parents and chris's parents. Pray for us:)

I Heart Tucker

They still have not scheduled a date for tucker's surgeries, but they will be some time next week. I think the doctors and the surgeon have not decided whether the nissen will be necessary. Tucker had an upper GI and a PH test which showed that he does not have reflux-however, with the g-tube, babies usually develop reflux. So they might do the nissen just in case-but of course they don't want to do more than they have to in case it bothers him. so i guess they'll decide soon. I held him last night. I just can't believe the amount of love I could have for one person. I knew it would be like that, but I didn't really "know" until he was born. Thanks to everyone for replying to my last post. I feel so much better knowing that i'm not some weirdo. I just feel so guilty all the time when i focus on the bad instead of the good. I feel like I should just be so happy that he's alive, but then there is no "should" when it comes to emotion. Today I had such a bad experience, but I don't think it was really the nurse's fault. Tucker was sleeping when I first got there, but then he was all red and trying to cry-his signs for gas. so i put on his music and checked his diaper-it was very wet, so i changed it, which made him even more upset. Once he poops, he feels so much better, but he just wasn't doing it. The only other thing I know to do is hold him-holding him and moving him usually gets him to poop and feel better, especially when I hold him upright and pat his back. So I told his nurse I wanted to hold him (I don't ask anymore-I tell), and she said no. She said he was upset, so he might pull out his tube, and I could hold him once he felt better. I burst out crying right there. I know that some NICUs have private rooms, but ours is a pod with four babies, so I was crying in front of a bunch of medical people and parents. I was so embarassed. I didn't want to wait until he calmed down to hold him-I wanted to hold him in order to calm him down. Tucker deserves to get held by his mommy when he has a tummy ache, right? That's what I would do with any other baby who cried, and this one's mine, so I was so upset that I couldn't hold him. I didn't know his nurse today, so I guess that's why she said the next thing: "I know it makes you feel better to hold him, but he doesn't need that right now" Sure, I hold him to make my own self happy- I do NOT think so! I have heard and read all of my life all of the benefits of touch and holding for a baby, so why couldn't I hold him? So anyway, I had no rational train of thought at this point b/c i was upset, so I just agreed with her and sat back down. She said "you know, he likes a firm touch" but she must have noticed my face, b/c then she said "but of course you already know that" No, I've just been here for months, yet somehow I know nothing about my child or his care. He eventually calmed back down, and then the nurse came back and said "you can hold him now." Sure, once he was comfortable and asleep! like I was going to move him and aggravate him then! I said, "no, i don't want to bother him. he needs his rest" and then I started crying again! I am 22, but I look about 16, so I wonder if it is my age that makes the nurses treat me like I don't know what's going on. Most of the nurses know me, so they are very nice to me and let me do many things that are not technically allowed. But when I get a nurse that doesn't know me, I feel like wearing a sign "I am intelligent and capable of helping my child-I've been here for months-please be nice to me" his nurse also told me "you know we don't usually allow you to hold while he's on the vent" Yes, of course I know that-that's why I didn't hold him until he was 7 weeks old!!! However, Tucker is an exception b/c he is going to be on a vent for months. We have been holding him as much as we want to lately b/c once he has his surgeries, we won't be able to hold him for awhile. "Usually" they don't hold on a vent, but usually a baby does not get a trach-Tucker is not usual in that respect. I hope to post about happier things soon. I have had a very hard week.

Frustrations

This isn't really about Tucker-it's more about my frustration. I thought I had gotten over a lot of feelings in the last three months, but I guess I have not. Tucker's due date was Friday and he turned three months old on Saturday. I guess that is just making all of the old angry feelings come back. It's like I never worked anything out or can't move on. The angry feelings are the ones: I missed out on the last 3 months of being pregnant-Tucker missed out on his best chance at his new life. I didn't get to see my baby for over 48 hours. I didn't get to hold him for over 7 weeks. He's not coming home until he's around 6 months old. It's just that I'm kind of mad at myself b/c I thought I had moved past this. But when I see a birth on TV or a movie, or see the new moms leaving the hospital with their babies when I go to see Tucker, it just all comes back. It's like I haven't gotten over it. People keep telling me how well Chris and i are taking this, but sometimes I think "if they only knew." Two of my friends are 8 months pregnant with their first babies, and I feel like we should be swapping advice and fears, but I don't even know what 8 months pregnant feels like. And their babies are going to be home before Tucker, so I won't have any advice to give them, really. I am sick of feeling like this. I just want to be happy and supportive of other pregnant women, but I wonder how do I get over these feelings of resentment and of missing out? We want other children, and I am scared that when I have a full term baby, I will go through all of these feelings again, seeing what Tucker did not get to have. I just needed to let these feelings out, thanks for listening.

So Many Procedures

Today was Tucker's due date. He is at 40 weeks gestation, and he is actually 13 weeks old. The neo just called me to say that in addition to his trach surgery and hernia surgery he is getting in two weeks, he may also get a g-tube and nissen at the same time. I feel like crying but also am out of tears at the moment. I don't want my baby to have to go through all of this.

Sample Pics

The photographer sent me a sample from Tucker's photo shoot. They are beautiful. Check them out: http://www.davidhumphreysphoto.com/downloads/tuckerweb/index.htm I will ask Wes for the national website so that other SHARE parents can find photographers in their area.

Tucker the Fashion Model

Today Tucker got professional pictures taken in the NICU. There is a national charity that takes pics of babies in the NICU and gives the parents a CD of the pics for free. My sister found it, so we contacted the photographer in our area. We set up the appointment, and today Tucker was a model. I could not have asked for a better Tucker today. He was awake and SO cute, making all kinds of expressions for Wes to capture on film. We flipped him on his belly, his back, sat him up, and took pics of me holding him. Tucker did not fuss for any of it-he usually gets mad when we move him around. We even took some naked shots (to get his baby butt) and he did not make a mess on his blankets. His nurses were wonderful about the whole thing. They helped position the tubes and wires so that Wes got mainly Tucker in the photos, not so much the other stuff. The nurses said that they have never had a professional come in to photograph any of the babies. That seems strange to me b/c some babies are in there for so long I guess I just don't want to miss out on any of the memories. Tucker will be 3 months old on Saturday, and I had always planned on getting his picture taken at 3 months old, so I still did. Hopefully, at 6 months, he will be home for his picture. Tucker's trach surgery has not been scheduled yet, but he will probably get it in about 3 weeks. He will also have his hernia surgery then. He has two large hernias on his testacles. His doctor calls them Tucker's "big friends." They look SO painful, but today the dr pushed very hard on them, and he did not even flinch. So I guess he's okay. I love him so much!

Update

Tucker now weighs 5 pounds, 8 ounces, so that's a good step. We are not really as excited about his weight anymore b/c it is not getting him any closer to getting out. No matter how much he gains, he will probably be in the NICU for another 3 months. We joke that he will be the biggest kid in there-he will have to have a toddler bed rolled in. Anyways, he switched to the volume ventilator today, and his blood gases are much better. It is a higher form of support, but it's not the ossilator. I really don't understand, but the doctors and nurses tried to explain it to me. It is giving him a higher volume of air, so a higher pressure in his lungs than the regular vent. They want him to be back to the regular vent before he gets his trach, but it's not totally necessary. His diaper rash got worse over the last couple of days, but now it is healing. Tucker extubated himself Friday night, and he dropped quickly. In order to bag him back up, they had to rip the tape off his face, so he has a red sore on his face from that. Last night, Tucker was awake so we wanted to hold him. After Chris held him for awhile, he pooped, so I wanted to change him quickly in order to help his diaper rash. Well, after we changed him, we had to leave him in his bed-so I did not hold him It takes a lot for the nurse to get him in and out of his bed, but he was in such a good alert mood that I cried b/c I couldn't hold him. It is getting harder to leave him b/c he gets cuter every day! I am posting some pics of him that we took over the last few days. You can see all of his pics at: http://s92.photobucket.com/albums/l21/lgalat1/ this takes you to the main photo page, then you have to click on each subcategory-there are too many pics, so I had to organize them. I'm a little obsessed with my child-let me apologize in advance in the bottom pic, you can't see tucker's face, but isn't that the cutest blanket? my cousin made it for us-she has a business doing that-we are also a little obsessed with LSU-my alma mater .

Insurance Issues

So the SS office finally called me today. We had applied for SSI disability since Tucker was born at such a low weight. He is "disabled," so he will get $30 a month in the hospital. He will also get Medicaid, so that's good. It will save us money on all the bills! I wonder if it will cover his bills once he comes home. I'm sure those will add up just as quickly as the ones from in the hospital. They told me that if Medicaid pays less than 50% of Tucker's medical bills, then Tucker could get a higher SSI benefit. He is supposed to have BCross, so then Medicaid would pay barely any of his bills. However, BCross has not officially "accepted" Tucker yet-I sent his application, but they never got the fax-then I went in and brought a handwritten application on June 30. So last week we got a bill for backdated premiums since May 26, Tucker's b-day. I sent in the check, they deposited it, but Tucker still has not been officially "accepted" by BC according to the hospital. I know that he is, though, b/c they deposited my check. Point being, Tucker can not get his benefit increased until the SS office knows that we have private insurance paying his bills. Once I get that proof, then I have to track down my case worker at SS to show her I'm not lying about Tucker's medical coverage. I feel hopeful, though, b/c until today I had given up on the SSI benefits altogether. Now I know there is a chance. Any money or help Tucker can get will make me that much closer to staying home full-time with him. I wonder if there are any programs for Tucker's long term care-since he'll be on the vent for so long. I used to take care of teenage quints who had long term problems. I was paid by the state through a social service coordinator. i wonder if Tucker would qualify for that type of help. I have read from other blogs that many of you have therapists and nurses come into your home-I guess in the next few months, I will learn all about that, too.

My Little Cutie

I went to visit Tucker this morning. The ladies from work wanted to meet him, so I took them all in one by one. They said the pictures don't do him justice. He is adorable. Tucker is starting to get a big head-we need to quit telling him how cute he is. He pooped once, and the nurse was changing him when I came in. He has a bad diaper rash, so they try to change him right away. For a while after that, he was happy, then all of a sudden, he started fussing and turned bright red. He was fussy for about 5 minutes, then another nurse checked his diaper. he had filled it again! and he was in pain from the rash-I felt so bad! I hadn't even checked. So I cleaned him, then he was happy-five minutes later, he had a full diaper again-so this was the third time, and I forgot to put a diaper under him (rookie mistake). So after I cleaned him, I went to grab a diaper, and he pooped all over his clothes and the bed. It took me and two nurses to change out the blankets and clothes with a MAD Tucker. Once he was all clean and flipped onto his belly, he totally changed-he got happy immediately. So for about 20 minutes, he just looked up at me with wide eyes and sucked on his tube. I talked to him-he looked like he was saying, "look at me, mommy. i am the cutest baby ever-keep talking to me like that." I patted his bottom until he fell asleep. I love him so much! I brought him his Boppy pillow, so they lay him on it sometimes. He likes to be more upright so that he can see what's going on. They also gave him a new stuffed arm. It lays around him, complete with a stuffed hand near his face so that he thinks it a person's arm holding him. I wonder if he is really tricked. The doctors stopped his sedation today, so he was trying to pull out his tube the whole time. He is awake, so he says "get this out!" The doctors also moved him from bolus feeds to continuous feeds, just in case having too much formula at once is causing his breathing problems. They doubt it, but they want to try everything before putting in his trach. So, we'll see. Have a nice day, everyone

Trach Update

So Tucker's doctor called today to say that it is very likely that he will get a trach in a few weeks. He is at 38 weeks 4 days gestation, and they usually put in a trach at 42-44 weeks. He just started steroids, and they don't like them to be on steroids for a trach surgery. So they might cut his steroids short-don't know yet. So we are looking at mid-September for the trach surgery, then about two months for him to get used to it and get ready to come home-so about a five month long NICU stay once it's all said and done. I feel pretty positive at this point, I guess b/c I've known for about a week that Tucker was a long way from home. That's really the hardest part. My husband is totally freaked about the trach, and about us caring for Tucker on all that equipment at home. I just want Tucker home so badly, but Chris says "we want him safe, too" I know that. The doctor said Tucker may be on a small vent for about two years. This just blows my mind-I don't know of anyone who has had this-so please, if you are in this situation, I need some support:) I know that we'll have help from the pulmonologist and home health care. I am not worried about learning the equipment-I have become very accustomed to the medical terminology and tests-they don't intimidate me anymore. What I AM worried about is how I am supposed to take care of Tucker and still pay the bills. My husband and I really wanted Tucker-we knew there would be sacrifices, but I never planned on staying home with him. I'm not being selfish-I'm being realistic-I can't afford to stay home, especially not for two years. . Any advice?

Our Story

My husband and I are 22, and Tucker is our first baby. We found out we were expecting on December 28, 2005, and our due date was September 6th, 2006. We later found out that we were actually pregnant a month earlier than we thought, so then our due date was around the middle to end of August. I had bad morning sickness, but it went away around the fourth month. I bought out the maternity stores, but I only gained 16 pounds before I delivered, so there was little need for those. When I was 26 weeks and three days pregnant, I felt very lightheaded. We checked my blood pressure-it was 145 over 115. I called my OB, then went to the hospital. My mom and husband drove me-I didn't feel up to driving, although I did not suspect any huge problems. My aunt had preeclampsia at about 30 weeks (6 years ago), but she went home for bedrest, so I thought if I had that, I could just go home, too. It turned out that I had lots of protein in my urine, so I got put on Mag and admitted to the hospital. They told us that I probably wouldn't leave without delivering first, so I thought I'd be in the hospital for months. This was on a Tuesday. They gave me the first steroid shot for Tucker's lungs that night. I just got worse, and being on the mag made me feel like I just wanted it all to be over, even though I knew delivering so early would be bad for Tucker. By Friday morning, i had the two steroid shots and 24 hours to let them take effect, so the doctor said we were delivering at 230 pm. we could not believe it. My cousin was born at about 30 weeks, and she was over 3 pounds-we knew Tucker would be less than 2 pounds at birth, and we had never heard of a baby being born so early and so small. Tucker was born at exactly 27 weeks, and he weighed 1 pound, 11 ounces. He had few problems-no brain bleeds-PDA closed in one day. So far, he has Grade I ROP (he is 11 weeks old now-at 38 weeks gestation), so we are very lucky-no infections yet, either!! so, his problem is his lungs. He has severe BPD. The neos say that only 1 or 2 kids go home on a trach each year out of their hospital, and Tucker is probably going to be one of those this year. He has had three rounds of steroids. The first did nothing. The second got him off of the ossilator and onto the conventional vent, but once the steroids ended, he went back to the ossilator. Then his third round got him down to a low-flow nasal cannula-he started taking bottle feeds-it was so great, but then he went back on the vent at very high support. So he's been back on the vent for a week, so now he is starting his fourth round of steroids, though they don't expect him to come off of the vent. They just want to stabilize him so that they can put in his trach. our real complaint is that now he won't be home any where near his due date. He has already been in there for 11 weeks and 2 days, and we have seen so many babies come and go. At the beginning, we felt left out around other parents with babies. Now, we also feel left out in the NICU, b/c at least those other babies are getting better and leaving. We know the nurses by name-that just should not happen. We are so grateful that our baby is doing well and that he survived after being born so early and so small. But he was "due" in two weeks, and the doctors say he may not come home until November-we felt like we were getting close to home, and now we realize we've just begun! It is something. Even if he comes off of the vent with this round of steroids, he may end up back on the vent after them, b/c of his BPD. Of course, we do have good days with him-really, any day we see him is good. He is so cute, and we love him with all our hearts. Tucker has 5 aunts and 3 uncles who love him, too-he is already spoiled. He now weighs 5 lbs, 1 ounce, so he has come a long way-it's just his lungs-but the older he gets, the cuter and more interactive he gets, so it is harder to leave him everytime! I'm sure you all understand this.

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:)

Day 35

The doctors started another round of steroids on monday-they started seeing progress yesterday (Wednesday) and they will continue the steroids through Friday. Monday was a good day, then on Tuesday, they tried to move his ventilator settings down, but he did not like it (of course). Wednesday morning, his amp was on 38, but the oxygen in his blood was good, so they moved the amp down to 35. Then at 6 pm, he was doing so well that they moved it down again-to 33. I called today around noon, and they said that they moved it down this morning to 30. So let's see what happens for the rest of the day and tonight. The doctor actually said he might move to a regular vent soon instead of the oscillator-well, that better be true b/c it is not nice to get all of our hopes up. It is really all up to Tucker anyway, though, so we hope he does well. He weighs 2 pounds, 8 ounces, which seems big for him-he is almost to 3 pounds, which is exciting. Last night I went to see him. He had on his baseball shirt-he looked so cute:) He has a lot of hair, I think, and it is fuzzy looking. He has been behaving very well lately. He is very active, though. He moves all around in his cage (that's what we call his bed), so the nurses have to keep putting him back, but they say he is just acting normal for his age and size.

Day 33

Tucker is doing fine today. His breathing could be better, so they are starting him on steroids today. He will have a five day course of steroids, which usually helps breathing quite a bit. He has not gained any weight in a while. Yesterday, his nurse told me he weighed 3 pounds, 14 ounces-I told her "not my baby." She had picked up the wrong folder!! He is still at 2 pounds, 4 ounces. He has been using his energy to breathe, not grow, b/c he has been having quite a few good days lately. Tucker was baptized last Friday. Father Tim baptizes babies at Woman's hospital, so he came out to perform the ceremony. It was very nice; Tucker slept through the whole thing. Once he comes home, we are going to have another ceremony with everyone at church. Tucker has seemed pretty relaxed lately. Most of the time he is in the frog position, with his knees bent, and his feet actually resting on his diaper. It's so funny b/c his diaper is too big for him, so it serves as his footrest. Sometimes he is on his tummy, too, which is so cute. Yesterday his nurse put his blue shirt on him. He looked so comfortable. It's nice to be at the hospital when he's awake, but the majority of the time, we visit while he's sleeping. We keep getting gifts for Tucker, and they are all so cute. It is funny b/c we have preemie clothes for him, which we used to think were so small; now those clothes look huge compared to Tucker. He won't be big enough for preemie clothes for awhile. He has special shirts for babies under 3 pounds that mom bought at the hospital gift shop and over the internet. Most of the time he just wears a diaper anyway, but on good days he wears a shirt.

Day 27

Today the doctor called and said they are increasing his calories again and adding iron to his food b/c he lost weight two nights in a row. He still weighs over 1000 grams, though, so he still gets weighed every night. If he drops below that, then he will only get weighed twice a week. This is b/c weighing him gets him aggravated b/c he doesn't like to be fooled with, and getting aggravated makes him lose weight more easily. They expect him to be gaining an ounce a day at this stage. Mom and I went to see him today for about an hour. It was so nice to see him after I skipped a day. I really missed him. I just sat near him and held his legs still in a fetal position to make him feel more secure. He needs to feel like he is still in the womb as much as possible, and being secure is very important. He got his IV out of his arm, so he is moving both arms very freely now. Now they administer any medicine he needs through his feedings, so it takes a little longer to work since it's not put directly into his bloodstream. His nurse talked to us for a long time, and she told us that his sats have been high for several days, so he is doing well with oxygen. He is still on high breathing support,but they might just leave him there for a while to rest. When they change his support, he doesn't usually like it, so then he uses a lot of energy to breathe that he could use to grow instead. He is opening his eyes a lot lately-his nurse says he is nosy. he tries to look around to see what is going on all of the time.

Monday

Yesterday we started Vacation Bible School, and the buddy was Ray, the sun. Of course that reminds me of Tucker Ray. The sun was the buddy b/c it helps us grow (like Jesus)-that is what Tucker needs to do-grow. He had a good day yesterday. Everything is pretty much the same-they weighed him last night, and he lost a little weight, but nothing really serious. He's on medicine to get rid of his fluid on his lungs, so that makes him lose weight. He had good sats and lower oxygen support yesterday, but not enough for the doctor to change any settings. His digestion is still good. Vicki said, "you can tell he's part of our family. He'd rather eat than breathe." Well, that is the truth. I just noticed last night that Tucker is surrounded by girls. He always has female nurses, and the other two babies in his pod are little girls. I told him that's why he's so bad-he's trying to get all those girls' attention. My dad said today he has another baby next to him, another girl, so now there are three baby girls with him. Chris says he's bad to let them all know he is the boss. I hope not-he is already going to be spoiled enough at home. He does not need to also be the boss at the hospital.

Sorry I didn't post yesterday. Here is yesterday's update. So it was Father's Day yesterday, and we went to see Tucker. Tucker got his daddy a card, and so did I. The doctor had already called, and he said that Tucker was getting weaned a little off of the vent. Baby step, of course, but they all add up.When we went to see him, Chris wore his "I'm a new Daddy" pin that Tonia got for him. Tucker was just laying around, like normal. His nurse said he did not act up yesterday. She was on her sixth day in a row with him, so he was good for her. Chris talked to Tucker and told him all of the things they will do when he comes home, like going to LSU games and riding in his boat-since Tucker's coming home fully grown. I told them both that was not happening until Tucker was older-I am no fun. He is still getting the same amount of food as before, (6.5 ml per hour) but they added more calories to help him gain weight. It worked, b/c he was weighed last night, and he gained three ounces.He is at 2 pounds, 5 ounces now:)Nana and Pappy (that's my mom and dad-we're not quite sure about that Pappy name-he chose it himself) went see him yesterday, and he was on his tummy. He has never been on his tummy, so I am anxious so see that.I called the nurse to ask what being on his tummy is about, and she said that it helps him breathe better. Babies usually aren't allowed on their tummies b/c of sleep apnea (short stops in his breathing), but since he's hooked up to so many monitors, they'll know if he stops breathing. His oxygen support was down to 62%, so that's good. He goes up and down all day. Oxygen support is not the same as sats. Regular air has about 16% or 26% oxygen in it (I don't remember which), but most people can still pull the oxygen out and breathe fine. Tucker needs extra oxygen in his air in order for him to breathe it in and get it in his bloodstream (which helps his sats). Tucker is usually b/t 90% and 100% support. When his sats stay over 95% for awhile, then his support can be moved down, and it stays down as long as his sats are okay. If his sats and his support are low enough, then I think that's when they change his actual ventilator settings-there are three settings, and the doctors and nurses have a hard time explaining them to me. Uncle Andrew bought Tucker a little Astros bat and an LSU football, so we're going to see if we can put them in his isolette. Aunt Gina wrote Tucker a song, by the way, so I might post it if she gives me permission. Also, Tucker's nametag on his bed is on a frog now. When he was born, it was a fish, which is perfect b/c his dad (and grandpas, and every other male relative) is going to take him fishing. Now it is on a frog, which is funny b/c it is frogging season-I doubt the nurses knew that.

Our New Journal

Today we went to visit Tucker a few times. He saw his mommy and daddy, his Townsend grandparents, Alexis, Justin, Jessica Christian and Mrs. Lynae-so he was pretty busy. He is now up to 6.5 ml of food an hour, and his calories have been increased, so he should be putting on weight. He is currently at 2lbs 2 oz. The doctor says he could not be more pleased with his digestion, so that's great. Not for the nurses, though-b/c digestion means lots of poop. Last night, he pooped so much that it went through all four blankets and stank up the nursery. His nurse told us it was awful, but of course that is good for him. He has had two brain scans, and they both look normal. Also, his eyes will be checked next week for the first time, since he just started opening them. He is not breathing that well-he has been weaned a little from the respirator, but sometimes he goes back up. Each day is a different story-sometimes he breathes a little better, and sometimes a little worse. Keep praying for him-so far, prayers seem to be working. We want him off of the ventilator for the obvious reason-he needs to breathe on his own, but also b/c once he's off of the vent, mommy and daddy get to hold him, which will be great. All of the nurses say he is B-A-D. Like we need that. He pulls out his breathing tube on a regular basis. I told him if he wants that tube out so badly, he is going to have to breathe on his own. Last night he pulled out his tube at shift change, so the room was full of nurses. He likes to be the center of attention already. He also kicks when they change his diaper or try to put him in a certain position. He likes to do the opposite of what the nurses want. They call him "Mr. Townsend" b/c he demands respect. Today his nurse said "he's so bad, but it doesn't matter, b/c he's cute as a button." Vicki made him a blanket that says "Our Little Fighting Tiger," and apparently, Tucker took that literally.I have to say that he likes it when his mommy and daddy touch him, though. His sats (oxygen saturation) go up or down depending on his mood. They like them to be b/t 85% and 95%. His sats go down a lot when he's mad, like when he gets a shot or something. Well, his sats always go up when we touch him. Today, Chris covered his bottom (his hand pretty much covers Tucker's whole body), and I put my hand on his head, and he calmed right down. He closed his eyes and laid still, but then I moved to get a chair (I was getting tired of standing there), and his sats dropped. Chris said "It's okay, mommy's coming right back," and once I came back and touched him, his sats went back up. When Chris talks, Tucker opens his eyes so wide. He also gets active, like kicking and moving his hands. I really think he already knows that daddy is fun and mommy calms him down.Well, I'll post some more info when I get it, or when I remember something else.