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?