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NathansMom13

March 2010

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DOCTOR APPT.

Mar 06, 2010 07:45am (EST)

Well my doctors appointment went really well. My doctor laughed when I told him that he really is to blame for my high blood pressure, not sure why he laughed, I was being serious

I showed him how much better it is when I'm home and he said it's still a little high, which I knew, but it is pretty good compared to what it is in the office. So I have avoided bed rest for another 2 weeks. That's my goal each time I go, to avoid bed rest that visit.

He did say that I have to start going every 2 weeks for growth ultrasounds though. I haven't really gained much weight, 4 lbs., and my blood pressure is a little high so he wants to make sure the baby is growing OK. Seeing as how I have been going every 2 weeks the whole time I may as well get ultrasounds out of it. The only downside is that the ultrasounds will make the visits a lot longer but if that's my biggest problem then I'm diong pretty good.

Nathan is doing really good since his surgery. He is finally acting like himself again, no more snuggle time. He is back to running around all the time and playing which is nice to see. His steri strips are still on but they are just starting to fall off his incision. It looks like he has a c-section incision, we have matching scars now.

Matt and I went looking at new cars for me yesterday. I am going to get a Subaru Forester, I can't wait. We still have to go back and actually buy one but looking at them was a start. I am hoping we will go today or tomororw to actually buy one so that I will have a new car by next week but who knows. With Matt's work schedule anything can happen and we might not have time to go back for another week. Since Matt is going to take my car I'm going to clean it out for him today. We are going to trade in Matt's current car, he's going to take my CR-V and I'm going to get the new car. His car now is a Dodge Charger that he loves so he's a little sad to trade it in but he knows that he doesn't need a nice car anymore since he only drives it to work. I am going to clean the CR-V to try to make the transition a little easier for him, guys get too attached to their cars.

Have a great weekend everyone. It's really nice here, makes me think spring is on the way. I hope everyone else has nice weather this weekend.
Laura

Posted by NathansMom13 | Comments: (4) | Permalink

CATCHING UP

Feb 27, 2010 07:32am (EST)

Nathan had surgery on Monday and it went really well. It was supposed to take 3 hours and it actually took a little less than that, usually he is in there a lot longer because it is so hard to get an IV in him but not this time! There were no complications with the surgery itself but there was a lot of swelling so the Dr. put something directly into his bladder so it could drain, in addition to the catheter he had. Due to that he was going to have to stay an extra day, no big deal.

That night he resumed his tue feeds and did great. The next morning they took the thing in his bladder out since they were pretty sure the swelling was going down. So we were supposed to be able to go home the following day, Wednesday. Tuesday night after I left the nurse called to see what his rate was for his feeds, I said 80 and wondered why she didn't just look in his chart. Then a little while later a different nurse called me to tell me they had forgotten to order his food and were going to have to put an IV in him (they had taken the one from surgery out already) to keep him hydrated through the night since the kitchen was closed and they couldn't get his food.

I get there the next morning and his nurse was in there with him, he was getting sick. That is really unusual for him, he never gets sick, ever. I notice there is no IV so I asked her what they did about his feeds, she said they couldn't get an IV so they fed him pedialyte all night, fine by me, at 100 instead of 80 an hour!! I was so upset. No wonder he was getting sick, he doesn't have a stomach that can expand so changing his rate by 20 an hour in one night is a huge trauma for him!! I asked why his rate was 100 and the nurse said that is what the dr. wrote for and no one questioned it. Even though I had told them it was 80 and it's in his chart!! So I talked to the dr. to tell him that Nathan's rate NEEDS to be 80 and he can't be increased by 20 in one night, that big of an increase would take us a month to do! He said he didn't think that was why Nathan was getting sick and most kids can tolerate that kind of increase. I nearly screamed, most kids have a stomach in their belly not their chest.

So he continued to get sick all day on Wed. and the dr. still wanted to feed him, I said no. His little belly needed a break and I didn't really care what he thought. Then he finally agrees with me that he does need a break. Then that night they try to feed him again and he wasn't tolerating it at all. Since they traumatized his stomach he didn't want to eat at 80 either, I was so angry. One mistake can set him back months and months in terms of eating. I hate that the dr. didn't take Nathan's specific medical history into account when writing the orders, and the nurse didn't question it! So all day Wed. he just sat on my lap and watched cartoons and slept, completley abnormal for him.

Thurday he was still getting sick in the morning. At noon we decided to give him pedialyte at 30/hour to see how he did and he did great with that, finally. So he got that all day Thursday and that night they slowly brought his rate back up to 80. Then Friday afternoon when he usually takes his nap he ate his regular food at his regular rate and did great. So once that was done we were able to go home.

The other thing is that I think he is sick. I talked to his dr. about his and he said that most kids act different with a catheter in and he would be fine once they took that out. They took it out Friday morning and he's still acting sick, so I told his dr. that and he just sort of blew me off. I am glad we got to take Nathan home, but I just want to go to the hospital once when Nathan doesn't leave worse than when he enters the hospital. Hopefully it's just a cold and will go away soon.

OK, I think this blog is long enough

In other news, I go to the dr. on Monday and can't wait to show him my blood pressures, they have been great. Hopefully I can avoid bed rest completley this pregnancy but I'm not so sure.
Thanks for reading, enjoy your weekend!
Laura

Posted by NathansMom13 | Comments: (5) | Permalink

DOCTOR TODAY

Feb 15, 2010 01:51pm (EST)

I just got back from my doctor appointment and let me say, I hate my stupid annoying blood pressure. When I was pregnant for Nathan I had high blood pressure the whole time that turned into pre-e towards the end.

Once again my blood pressure is too high. My doctor told me it's to early for official bed rest but he wants me relaxing more and he sees bed rest in my near future. He also wants me to start taking it at home since I swear my BP is only high at the doctors office. And in my defense, they took my BP right after I found out I gained 4lbs. in 2 weeks!!

Matt does have the nursery finished, and we have all the furniture in there all set up which is good. Now I need to start brining all Nathan's stuff down from the attic and cleaning it all off before I go on real bedrest. I need to get everything ready since it looks like I only have a few more weeks on my feet.

Matt did say that this is what happens when I assume I'm going to go on bedrest. Since I got pregnant I have assumed that at some point I would go on bedrest since I was on bedrest for 12 weeks with Nathan. For me bedrest is just a part of pregnany that I want to be prepared for. I feel like Matt is blaming me for this. He really upset me, this isn't my fault. I can't change my blood pressure, I can't control it. I just wish he could be more supportive of how hard this is for me.

Nathan is doing wonderful. He spent the weekend with my parents and had a great time. He cried when he got dropped off this morning. My mom said he did miss me though, which makes me feel good.

Hope you all had a wonderful weekend!!
Laura

Posted by NathansMom13 | Comments: (3) | Permalink

STRANGER ISSUES

Feb 06, 2010 09:14am (EST)

I have always struggled with how to answer questions from strangers about Nathan. People see him and want to know what’s wrong with him, and I think that is rude. If people really are interested and curious I have no problem answering questions, but people aren’t usually genuine. They just want to know. Here is my problem, they would never ask someone in a wheelchair why they are in the wheelchair. They would never ask someone with an obvious disability what is wrong with them. I have been thinking about that a lot, and why people feel so free to ask about Nathan and I think I’ve figured it out. Nathan is a normal kid, he's a happy kid. He has nothing wrong with him developmentally and acts like any other 2 year old, he even throws tantrums in the middle of the store when he realizes he isn't getting his way. I think because he seems so "normal" people are confused when they see his trach. They don't expect seemingly normal kids to have something like that. There is a misconception out there that you have to be desabled to need medical equipment, which isn't true.

I was at the mall yesterday with Nathan and Aunt Katherine, his NICU nurse. We were walking by a little candy stand and I needed to stop and get some candy, I am pregnant after all

While I was paying for my little bag of $14 candy

the man working there asked me what Nathan's trach was. This is a question I have always struggled with. He didn't ask the question in a nice way, which usually means I respond rudely with an untrue answer. I know, I know this isn't the best way to do it, but I'm trying to be nicer. So I told the rude man that it was how he breathes. He then asked if it was permanent, I wanted to hit him. I wanted to ask him when in his life he hasn't needed to breathe to survive, that once Nathan no longer needs to breathe to survive then we will get rid of it. The truth is, we are hoping it isn't permanent but there are no guarantees. I didn't want to get into Nathan's medical history with this guy so I said yes and left.

Why when strangers look at Nathan do they only see his medical stuff. God forbid they get a glimpse of his belly all they see is scars and his feeding tube (which he was showing the world when he all but took off his shirt to show Aunt Katherine where his baby lives, in his belly button of course). They look at him and they see a trach and medical needs. I look at him and I see a little miracle that is walking around. I see hopes and dreams that I used to think I was going to have to let go of. I see a happy little boy who has no idea that he's different from other kids. I see a brave boy who has endured more surgeries in his short life than most people ever have. I see a little boy who will dance in the middle of the mall just because he hears music (he did that and it was really cute). I don't see a little boy who has more doctors that some people have friends. I don't see a little boy full of medical needs. I don't see the things that strangers see. I know that I'm his mom and I see him differently, but I wish strangers could see what I see.

Posted by NathansMom13 | Comments: (5) | Permalink

MORE GOOD NEWS

Feb 04, 2010 10:10am (EST)

We had our appointment with the peri yesterday. It actually went really well. First there was a tech doing my ultrasound and she narrated the whole thing. She told us what everything was that she was doing, so it was nice to get to see all his little parts. She even showed us his hands and feet! Then the Dr. came in and said that everything looked normal. He asked about Nathan's specific problems and then looked closely to the parts on the baby that Nathan has a problem with. He spent a lot of time on his spine, kidneys and heart (even though Nathan has nothing wrong with his heart). He said that everything looks great but he does want to see me again. Nathan also has some intenstinal problems and the Dr said they won't show up on u/s until about 25 weeks and I'm not quite there yet. He wants to take another look once I'm 25 weeks to make sure the baby's intestines are OK. He said that as long as I carry to term this baby shouldn't have to go to the NICU - that was the best news I could have gotten. I told him that was good since I've already told the neonatlogists that they can come see this baby but they aren't getting him for 20 weeks!

We also got some cute pictures of the baby. Matt's favorite picture is, of couse, of his "boy parts." The tech put a circle around them and labeled it boy. My favorite is one of his profile, I can't believe I'm over halfway there. Not that I'm counting but there is only 18 weeks and 5 days left!!
Laura

Posted by NathansMom13 | Comments: (8) | Permalink

IT'S ALMOST FEBRUARY

Jan 30, 2010 08:47am (EST)

Yesterday Nathan had an appt. in Boston with his GI doctor. We started seeing him this summer after our hospital at home put Nathan on 24 hour a day feeds in an attempt to manage his dumping syndrome. We weren't happy that our very active son had to wear his feeding backpack so we wanted something else done, and our GI dr. in Boston has been great. He now has Nathan at a place where he only has to eat while he is sleeping, including his nap, but is working to get him to a place where he only eats at night and will just get water during the day to keep from getting dehydrated.

The GI dr. also ordered another swallow study because I suspect he is aspirating a little. The Dr. said he could be aspirating for a while before it causes a problem, so hopefully he isn't at all. I have to wait to hear about that appt. next week. Nathan was like a monkey during the appt. and wouldn't sit still for a second. He was climbing on the chairs and trying to climb on the exam table, which makes me happy. There was a point in his life where I wasn't sure what he would be able to do, so to see him acting like a typical kid is really nice to see.

In pregnancy news, everything is going fine. Baby seems to think it's the most fun to wake up and kick right when I'm trying to go to sleep. I never really felt Nathan move, he went from breech to head down at 34 weeks and I didn't feel it at all - he had tons of extra fluid which meant he was never short on space. It's sort of weird to feel this baby move so much. In just a few days I go to my peri. for another u/s to make sure this baby truly is healthy. I'm scared. Very scared. My regular OB has said that everything looks good and I believe them. The peri has a better machine and can see in more detail, what if they see something. We talked to a couple genetecists about Nathan's specific birth defect and we know there is a chance it could happen again, and we have an increased chance of having any birth defect than the average person, but it's still a low percentage.

I really wish I could be an ignorantly happy pregnant woman. I was talking to my SIL the other day, I wanted to know if she needed help getting her baby's room ready since i think she will deliver early again (her first came 5 weeks early and was fine). She told me she didn't, but then for some reason started talking about how glad she is to be 31 weeks pregnant. I was suprised, she hated being pregnant with her son, it was actually nice to hear. Then she said 'I'm 31 weeks, nothing can really go wrong now.' I had to bite my tongue, I wish I could think like that. At 31 weeks there are tons of things that can go wrong and lead to a devestating outcome, but she doesn't see that. All she sees is that she's 31 weeks and in her eyes, nothing can go wrong now. Imagine thinking like that - being relaxed for your pregnancy.

I never got to be the happy pregnant woman, with Nathan I had problems very early on, starting at 6 weeks. Mine was never a normal pregnancy. Once the bleeding finally stopped they discovered something wrong with him and it was all downhill from there. I feel like I was robbed of something that I will never get back. While I do love being pregnant, it's an awful time for me. I just wish I could enjoy a pregnancy without thinking about all the things that can go wrong.

Have a good weekend everyone.
Laura

Posted by NathansMom13 | Comments: (5) | Permalink

NEED OPINIONS

Jan 27, 2010 09:20am (EST)

Hi everyone! I'm not sure if I have talked about this before, but I need some opionions on it. I am going to have a repeat c-section with this baby, it just seems like the more reasonable thing to do for our family. With that comes the ability to pick the delivery date. My doctor told me anytime before my due date in my 39th week he will schedule it, sounds good to me.

I have picked out June 15th as the baby's delivery date, as long as everything goes as planned. My nephew's birthday is June 8th so I don't want anything too close to his birthday. Also, Matt really likes the lunch that is served at the hospital on Wednesday's so if I deliver on a Tuesday like I plan he will have his favorite lunch while we are there. I know that is a silly way to pick a delivery day but how else do you pick?

My mom wants me to deliver on the 17th since that is my late Grandmother's (her mom's) birthday. Here is my problem: my sister and my late grandfather (my mom's Dad) share a birthday. Every year on my sister's birthday my mom talks about my grandfather and what a great birthday gift she was for her Dad. Then she gets upset and makes my sister's birthday about my Grandfather, not my sister. I understand that she just wants to remember her Dad on his birthday, but that is why I want my baby to have his own day. I don't want him to intentionally share his birthday with anyone. I don't want my mom to be able to make his birthday about anyone else. Because I'm not doing what my mom wants she is upset with me and is always brining it up. Am I being unreasonable? Should I just switch to make her happy?

I am so sick of the relationship I have with my mom. I was talking about it to Matt last night and neither of us know what to do. Every time I try to talk to my mom about how I feel she gets upset and tells me I'm being insulting when I'm just trying to tell her how I feel so we can fix our relationship. Another problem I have is that when she is talking to Nathan she refers to herself as 'Mommy' which drives me crazy. I know she thinks I'm an awful parent but that is no reason to call herself Mommy when she thinks I can't hear her. I also tried to talk to her about that but she told me I was bring rude and stopped talking to me about it.

I'm so sick of complaining about my family problems. I wish I was one of those people who talked to their mom about anything. I don't even tell her everything that is going on with Nathan, medically speaking. I just wish things were different.

In Nathan news, he needs to have surgery. He only has one kidney and he has reflux in that kidney. The urine flows backwards from his bladder into his kidney which will cause kidney damage if he gets a UTI. Since he's had a couple UTI's lately the Dr. wants to fix the problem, so he's going to have surgery in a few weeks, I'm not sure of the date yet. This surgery is no big deal and we've known he was going to need it since he was born. He should only be in the hospital for a few days after the surgery, as long as everything goes as planned.

OK, that's all for now. I have to go clean up some toys so Nathan has room to work with his physical therapist. She is coming soon and it looks like a tornado has hit our living room. Have a great day everyone!
Laura

Posted by NathansMom13 | Comments: (6) | Permalink

VENTING

Jan 21, 2010 11:10am (EST)

Please excuse the venting I am about to do. If you are sick of reading about how rudy my SIL is feel free to stop here

We went out to dinner on Monday with Matt's parents, his sister and her son. It was a nice dinner and then everyone came back to our house for cake, should have been a nice evening.

I served the cake for everyone, I was cutting it while everyone was upstairs looking at Nathan's new finding nemo room. My SIL came downstairs, looked at the cake and said 'you can tell you've never had to feed a child' because apparently I made Max's piece to big. I wanted to hit her, very sorry that Nathan doesn't eat by mouth and I don't cut cake for kids - EVER.

Then Matt, SIL and I were in the kitchen talking about when our baby comes and I said that I can't wait. She says 'come talk to me when you haven't gotten any sleep in days because IT'S up all night crying.' First, she called my son an IT, Second, taking a baby home from the hospital is MUCH easier than having one in the NICU fighting for life. I said that to her, that no matter how often the baby cries and how little sleep I get, as long as the baby comes home this time it will be easier. She disagreed and said the first 4 months are the worst and she wishes she could skip them all together, and that we had it easy last time since Nathan came home sleeping through the night!!

You guys, I hate her I really do. I can't stand the things she says to me. To make matters worse her parents are always saying what a great mom she is, and how wonderful she is with kids. I, honestly, think she just needs more patience with her son since she is always talking about how annoying he is and how annoying it is to do things. Here is what gets me: why can she even have kids? I don't think she deserves them. She has no idea how precious a baby is and completley takes it for granted. I would have sold my soul to have made Nathan healthy and she thinks his birth defect made our lives EASIER!!!

Also, she is due March 29th but I think she will deliver in early March since her first son was 4 weeks early. Anyway, my mom's friends are throwing me a baby shower on April 11th so I told SIL that I would understand if she can't come. She acted like we should change the date so it's more convenient for her!!

OK, I need to take a new approach with her. Everytime I see her I am aggrivated before I even see her because I know I will be aggrivated by the time we leave. I hope that if I change my attitude I will be able to tolerate her better, hopefully. It also doesn't help that Matt doesn't say anything to her, he's so used to her that her rudeness doesn't affect him anymore.

OK, if you skipped my venting you can pick back up here! Hope everyone has a great day

Laura

Posted by NathansMom13 | Comments: (5) | Permalink

WORDS I NEVER THOUGHT I WOULD HEAR

Jan 18, 2010 07:41pm (EST)

Today I went to my regular OB for my 20 week ultrasound. It was at that u/s with Nathan where everything went wrong. From that point forward for Nathan my life was never the same. We knew Nathan was sick, we just didn't know how sick he really was. Needless to say I was terrified going in, afraid of what they were going to see.

Thankfully they called me in almost as soon as I sat down, which got me some dirty looks from the other mom's who had been waiting since I even walked in the building. While the woman was doing my u/s I asked her to psy special attention to the kidneys since that was the first problem they saw with Nathan. She says 'to be honest, I only see one kidney but it could just be the position of the baby.' I paniced, afraid that VACTERL had struck again. Immediately began thinking that I can't go through the NICU again, I can't watch another child endure 12 surgeries before their first birthday, it's just not something I can survive again. The ultrasoudn woman wanted to switch rooms, we weren't in her "room" for some reason so she left us in the room we were in to go make sure the other room was free. After a couple minutes she came back and we moved rooms.

She started the ultrasound again and says 'see, there are both kidneys.' Now, while she was out of the 1st room checking to see if "her room" was available I was SURE she was really talking to the Dr. telling him there was a major problem with the baby. When she showed me both kidneys I almost cried I was so happy. Then the Dr. came in and did his own u/s, then said three words I never thought I would hear 'Everything looks perfect.'

I am so relieved that the baby looks OK. This is so silly but I am excited that for this boy we might be able to go to high school football games, or basketball games - 2 sports Nathan can't play because he only has 1 kidney and can't breathe great. I still have my u/s with my peri on the 3rd but once they give me the all clear I think I will relax. Also, I finally gained weight. I am now 18 weeks pregnant and I have finally gained 1lb!! At this point with Nathan I think I had gained 20, at least I shouldn't have so much to lose this time!!

OK, thats all for me. Hope everyone had a great day

Laura

Posted by NathansMom13 | Comments: (7) | Permalink

REASONS

Jan 14, 2010 10:40am (EST)

Ever since Nathan was born I have had an overwhelming desire to have another baby. I have been ready for baby #2 since long before Matt was, Nathan wasn't home from the hospital long when I realized I was ready. I think it has less to do with wanting anther baby and more to do with wanting the newborn experience.

Now I feel like an awful mother. I love this baby, I really do, but I want a newborn in the house. I want to have sleepless nights and a crying baby around. I want to be in the hospital and be able to show off my new baby to everyone who comes to see us. I want to breast feed a baby, not just pump and give it through a feeding tube. I want to go through my pregnancy and imagine what life will be like when this baby comes home, 4 days old.

I am now left questioning weather or not I got pregnant because I wanted another baby or because I wanted *A* baby. Did I get pregnant for the right reasons? Am I just trying to recreate the newborn experience we were robbed of with Nathan? When I was pregnant for Nathan I imagined what things would be like when he was born, and never once included the NICU in there.

I know all of my feelings are normal, I'm just worried. I got my final amnio results today and it was normal. The baby is genetically normal, but so it Nathan. His amnio also came back normal and he was in the NICU for 20 weeks. My first 20 week ultrasound is next Monday, I am having two done. My appt. with the peri is on February 3rd, hopefully after that we will know that this baby is healthy. I'm so nervous for monday, I just want to get it over with. My 20 week appt. with Nathan is when they first discovered a problem, hopefully with this baby it is much less exciting!
Laura

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