2 week post op #4

So today I took Nathan for his two week post-op visit with Dr. Mark. Dr. is very happy with his healing everything is looking good. No holes, no issues, but since he still does have some stitches in there, we are to continue on pureed foods and keep the No-No's on. Booooooo. I very much dislike this part and so does Nathan. He wants to eat food so bad, he can't see anyone eating food. He gets really upset. He has been really stuffy at night time, and it is keeping him from sleeping, I asked doctor and he can't seem to pin point it to something specifically related to the palatoplasty. So I am to continue with the humidifier and also try some saline, which I haven't used yet. Lets see hopefully it will help him. One more post-op visit in 2 weeks!

1 week postop #4

Today we took the kids in for there annual check ups. Nathan has lost 2 Lbs since surgery, which is only 10 days ago. He is now below the 10 percentile he was before surgery. I have to find some fattening food to thicken this kid up. He was already skinny before surgery now he is skin and bones. Seriously . . . . . . . Mean while Ms. Briana is in the 95th percentile. They both got some shots, Nathan 4 Briana 1. She is being more dramatic about it than he is. I am not going to lie, having to keep him in this liquid diet thing is killing me. He hates not eating food, he sees us eat and goes bonkers for food. Got hang in there, I really didn't think that the eating part of this surgery would be the worst part.

Day 2 postop #4

So, today Nathan woke up with a cheek that is not so swollen, now its about the size of a golf ball. The poor little guy, he is slowly but surely increasing his bottle intake. I forgot to mention yesterday that the pediatrician at the hospital did a blood test on Nathan yesterday and they found his Hemoglobin low, so he will need to be on iron supplement starting in one to two weeks. Then we are to follow with our pediatrician to see what his number is in about 6 to 8 weeks. It's amazing how much of a trooper the little man is, last night he wouldn't let me put him in his crib again but he did sleep for a few hours at a time in my arms. I got to take a shower this morning (yay!). We should be on our way home tomorrow. They decreased his IV so his appetite is increasing. He had 4oz of formula within 2 hours. Love my little man so much, he sure is a little trooper.

Day 1 postop #4

Today Nathan woke up with a very swollen right cheek. Its from where the doctors took a flap for his palate. He woke up in the middle of the night and was actually happy and smiling. He is drinking, but very little. Today doctor said that if he drank 16 oz. he could go home today, but I really don't see that happening. He is drinking about 1oz at a time, but I am squeezing it in his mouth and he is still fighting me. Slowly but surely we will get there. I feel so bad for him and his cheek, it is about the size of a tennis ball. the poor little guy. He is still on Tylenol with Codine, no morphine though, which is really good. Just gotta keep working on the eating.

Surgery #4

We are here at the hospital. It has been 3 hours since the beginning of surgery, we have been updated every hour. This will be a longer surgery, and there is also a chance of new ear tubes. This surgery is for his palate repair. I am really praying that this will be the last surgery for a while. I pray that everything will heal nicely and we won't have to re do anything anytime soon, or even better ever. I will keep posting as we receive more information. Surgery lasted almost 5 hours, Nathan is now sleeping. He had just a little bit of apple juice, but at least he is resting, since he has been up since 3am. He is keeping his diaper nice and wet, including me. The nurses had a diaper on him that was too small so he peeped all over me. Yay for me! Its amazing how every surgery he does better and better. Such a strong little man.

Happy 1st!

Today is Nathan's big day. He is turning ONE. Time really does fly doesn't it!? We are having a birthday party a dress up, Halloween party. Nathan is dressing as Andy and Briana is Raggety Ann. Happy Birthday to the cutest little boy ever. This past year that we have had him in our lives has not only been amazing, but such a blessing. He shows me everyday how blessed I am. With his next surgery coming up I can't help but to think of how brave he is. So far with 3 surgeries under his belt, he is as happy as can be. Yes, he does have his occasional screaming fits, but who doesn't? His personality is coming out more and more, and he is such a lovable little man. He loves to snuggle and smooch. He loves his sister so much and his cloths are his best friends. He loves to suck on the little corners of them. I love his spirit, his beautiful eyes full of life. I love that he is mine Love you little man!

Pre Op #4

Today we headed to the surgeons office for a pre-op visit. Surgery is in 8 days yeeck! I very much dislike pre-op, for a couple of different reasons. One it means surgery is right around the corner, two they do a blood draw every time. Nathan is such a trooper though, he never cries, pretty impressive right. Today we got to the draw lab and there was a baby screaming in the room. Another one in the lobby with some serious rash, (maybe chicken pox) also waiting for a blood draw. His name was called and in we went, such a little trooper. I always tell them the easiest place to draw his blood is his hand, they can never get it in his arm or foot, but his little hand is his lucky charm. First try, three tubes not a peep. He even smiled at the lady, such a sweet angel. For his palate surgery a couple of things we will have to look for: longest surgery so far, possibly longest hospital stay, no solid foods for a good 3 weeks to a month, no-no's for a good 3 weeks too. Dreading the waiting room during surgery, I hate sitting there it's the worst place to be. And this time around we will be there for ooohhh 3-5 hours. You know the saying "God never gives you more than you can handle", man is this little guy strong, he has handled so much and all in less than one year of life. Nathan's birthday is Saturday, 2 days before surgery. Can't wait to celebrate my little man's amazing first year!

Thanksgiving 2011

I feel as though Thanksgiving has becomes so trivial. I'm thankful for my family, kids, husband, health and so on, is usually what everyone says. But this year the normal things seem to mean so much more. I am so thankful for my children, Nathan has been an amazing child, yes he has driven all of us crazy for the past year, well I will take that back for the past year and a half. But he has been so strong and so full of life. His personality is so big. He was born with a boy gene, seriously he is such a boy, in every way. I remember the first time he picked up a toy car, he just knew to drag it on the floor. He is so strong willed, if he wants something he will get it. He will scream, go for it, try to grab it even climb for it now. He will have whatever he wants. Its his way or the highway in his eyes. He is a hand full and I love it. He is the spunk to my life. Briana is a whole other story. She is a girly girl, my little princess. She is very delicate and sensitive. But she is a 3 year old going on 13. She has an attitude at times that drive me crazy. She loves to push the limits and test boundaries. Which although it is really hard to deal with at times, makes for very good teaching moments as well as it shows her personality building more and more everyday. So this year I am thankful for the many blessings in my life, I'm thankful for love, caring, sharing and most of all my FAMILY! If it weren't for my husband I would never have found the strength to be where I am today, I would never have been able to enjoy the wonderful joy of being part of this family. I am so thankful for my little angels, they bring joy to my everyday boring.

Nathan is Walking

Nathan is walking. Yay!! I am so excited for my little man. He has been at the almost walking stage for a good 2 months. The Physical Therapist at the school, and everyone who watched him would say that he was so close to waking. And then today I look over at him and he just let go of Briana's little table and took three steps all on his own. I got so excited that I screamed and scared the poor little guy. I couldn't help it, I was so excited! By this afternoon he was taking about 10 steps and trying to turn. And every time he falls down he manages to get up all by himself, without holding on to anything, with his little butt in the air, haha, I love it. This is so huge, every milestone Nathan accomplishes is another moment of infinite happiness. He is my little gift and every new milestone he reaches is just another reminder of the wonderful blessing he is! Love my little man so much

Getting ready!

We are getting ready for so many different events its crazy! Nathan's 1st Birthday is coming up on the 29th. Then it's Halloween and a day later it's Nathan's 4th surgery. I'm getting tiered and stressed just thinking about it all. You know what I am most stressed about? Surgery! They are always so stressing. They are just very emotional for me, seeing my little man in pain is never fun. Then to top it off there is nothing I can do to take all his pain away. But for now I choose to focus on his birthday, one of the happiest days of my life. Gotta get things ready for his party. We are not doing anything big but something small with the family. It looks like it will be a dress up party, so everyone will have costumes. Should make for good pictures.

A new verse

I was reading a post on Cleft Advocate and came across a bible verse that I have known for a while, but it just hadn't come up for a while. Its John 9: 1-3 "As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him." I have help on to Psalms since I was pregnant with Nathan but this verse is pretty cool. I remember when I was pregnant with Nathan and one of the first things I did was blame myself. I kept thinking that I was cooking this baby in my oven. I must have done something wrong. My prayer in the beginning was for God to fix whatever it was that I had done wrong. But as this verse has reminded me, Nathan came in our lives just so that we could see God's glory more clearly. I love my little man so much and I am so grateful to have him in my life!

Surgery #1

Latham/Ear Tubes Nathan's first surgery. This surgery is going to have two parts to it. The first part will be for ear tubes, Nathan hasn't had any problems with his ears, but since many kids born with a cleft have ear infections he is getting tubes put in, just in case. This surgery is mainly for his Latham device. A Latham device is like a retainer on the roof of his mouth that will not only bring his gums closer together but it will also bring his alveolar ridge (the top part of his lip right under his nose) down to where it is supposed to be. The Latham device will be adjusted weekly by the Orthodontist. This device will likely stay in his mouth for about 2 to 3 months. This surgery should be quick and his stay should be short too. He is expected to be home the same day. Thankfully our doctors are very mindful of the fact that Nathan is just a baby so his surgery will be bright and early. Briana is staying with my mom again. Jon has dropped both me and her at my parents, Jonathan is not feeling well so I decided that we should stay away from him, specially the night before Nathan's surgery. Nathan is thankfully sleeping through the night for a while now. He can't have anything to eat after Midnight and only clear liquids until 3am. So I was debating on whether I was going wake him up and feed him at midnight or just let him sleep. I set my alarm clock for midnight and 3am, that way I could feed him, but both times I woke up he was sound asleep and I just figured he was better off sleeping for as long as he could. I never fed him. At 5am I started getting ready and Nathan was still passed out, fast asleep. I got him packed up into his car seat, he moved around a little but not much. I headed downstairs to wait for Jon, and we were on our way. We got to the hospital about 30 minutes before we were scheduled. Nathan woke up once we got in the room he was very happy and flirty with all the nurses. Such a sweet boy, which only made things harder. Doctors came in the room to tell us what was going to happen, the orthodontist showed us the Latham and explained how it was going to be attached, which is not very nice (it is stapled to the roof of his mouth). Then I had to hand my little man over to the nurse. So sad, having to hand your little baby to a person you don't even know. My heart sank, my eyes filled with tears, and butterflies took over my stomach. The waiting game begins. We headed over to the waiting room, where Jon's dad joined us. We sat on the couch and waited. About 40 minutes into the surgery the nurse called to let us know that everything was running well, and that as soon as they were done the doctor would come out and talk to us. So we sat there a while longer waiting . . . . . . . One hour and a half into the surgery the surgeon came out to talk to us. All went well, Nathan was in recovery and we could go in to see him. The nurse showed us the room, a nurse was holding Nathan, and he was just moaning. Aaawww, my poor baby, I couldn't hold back the tears. The saddest part was not being able to do anything for him. They wanted me to try to get him to eat, so I tried feeding him some formula, but he was not going for it. He seemed very tiered and not interested in eating. So they sent us to a room upstairs in the Pediatric Unit. Once we got to the room, the nurses kept telling me that I had to force feed him, and I was trying but he just was not willing to eat. The Haberman (a squeezable soft silicone nipple) is what I was trying to feed him with, but as I squeezed it in his mouth he would choke. The syringe didn't work either, paper cups not a chance. He was not swallowing, so it didn't matter how much I tried to "force feed" him, he was not going to eat. So we spent the night there. Which sucked, it sucked really bad. Mind you that he was due home the same day, but here we are staying at the hospital over night. I felt like a horrible mother, who couldn't do what my son needed me to do. I know the nurses meant well, but they made me feel worst. Then to top it off in the middle of the night he managed to pull out his IV. Yeah that wasn't fun. The nurses came and took him away to the procedure room to try and get it back in. That took 5 tries, did you get that 5 tries!! I was heart broken listening to my little man scream down the hallway. All through the night I kept trying to feed him and slowly but surely he started eating more. He wasn't taking a full bottle yet by morning, but he was doing better. So at the doctors morning rounds, they asked if I felt confident in taking him home. I said yes, because I just couldn't handle being at the hospital anymore, and they would also try to put the IV back in too. So I said we are going home, I figured that if we were home he would feel more comfortable and hopefully eat more. So we were discharged by noon. The next couple of days were challenging, having both Nathan and Briana to take care of made it tough, but thankfully Jon was home with me to help out. But . . . . . . . . Nathan's diapers started getting drier and drier and I started getting worried. I was dreading going back to the hospital, but Jon was there to give me strength and do the best thing. So after barely being home for 24 hours we headed back to the ER. We realized that Nathan was becoming dehydrated and before it could get worst, we took him in. Briana went back to my parents and Jon came with me. They got the IV back in and Nathan and I stayed at the hospital for another 2 days. He was finally eating by then and keeping his diapers wet. I was very grateful for Jon being there with me and helping make the right decision. He is the one who pushed me in taking Nathan back to the hospital, and it was absolutely the right thing to do. After all that my little man was back to his normal self. His sleep pattern is completely off since surgery, he does not sleep through the night anymore, but at least he is his normal self during the day. Latham adjustments all went well. His only problem was when he had both the rubber band adjusted and the screw, but with a dose of Tylenol everything went well. Little boy is a trooper. Oh I almost forgot to mention, the no-no's!! These very annoying arm restrains, they have to stay on to keep his little fingers, hands, toys and all other things away from his mouth. Next surgery in 3 months . . . . . . .