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.