So last night was sleep study. Spencer's oxygen levels stayed in the low 90's, which is strange for him since he is usually in the mid 90's. He was pretty stuffed up, so it could be the root of it. I figure they'll probably want to do a repeat in 3 months. Either way it goes, I'm refusing to put him back on oxygen at night. He hates it. Now just to get all the glue out of his hair...
A bit of good news from yesterday. Spencer is allowed to be out of his braces for 6 hours a day! This is a huge improvement on his quality of life. Hopefully he will be able to catch up on the sitting up stuff and finish rolling over. He's getting pretty good at both, but hasn't mastered them yet.
His 9 month check up was on Tuesday. He is in the teens for both height and weight, and his head is down to 75th percentile. My crazy baby seems to be coming more and more proportional. He is starting to take a lot more by mouth. He ate 1/4th a jar of baby food the other day, and can eat a whole serving of yogurt melts. He can even eat the puffed cereal pretty well now, although a serving is like 73 pieces, which isn't happening anytime soon.
Thursday, December 23, 2010
Saturday, November 20, 2010
Poop Braces
Spencer is progressing, a little slower than I like, but still it's a start. He has been sick more than healthy I think over the past couple months. He is struggling eating baby food, and enjoys using the sippy cup but doesn't "get" it. He's a happy little kid though.
We found out that he is pretty far sighted. He has to get put under to get his prescription though because of his PRS. They are going to figure out what's going on with his tear ducts and repair them if they can. If he doesn't have tear ducts at all, then they will have to do more extensive surgery later. The PRS also has made his ear canals really shallow, and will most likely have tubes put in when they can so they can repeat his hearing screen.
He has a hand doctor appointment on Monday. He is doing a lot better with his hands, but is still struggling. We're doing a consult to see if we need to do splints again. He also learned how to play his drums. We bought them based on recommendation from the Toys R Us Differently Abled Kids Guide. He loves them. He doesn't know it yet, but Santa is bringing him a Mozart Music Cube for Christmas.
He figured out he has feet. He lifts his feet up and looks at them when his braces are off. He still has to wear his braces for 23 hours a day. We go back in Dec where they will hopefully cut it down to 16 or 18 hours. He can also nearly roll over in his braces and is almost sitting up.
And this is gross. A couple of weeks ago Spence had a diaper blowout at daycare. I got a call that said, "Spencer is ok, but he had a diaper explosion and it got into his braces. We had to take them off and wash them so he can't wear them for a while." I giggled hysterically after I knew he was ok. He enjoyed his afternoon out of his braces while his shoes dried.
We found out that he is pretty far sighted. He has to get put under to get his prescription though because of his PRS. They are going to figure out what's going on with his tear ducts and repair them if they can. If he doesn't have tear ducts at all, then they will have to do more extensive surgery later. The PRS also has made his ear canals really shallow, and will most likely have tubes put in when they can so they can repeat his hearing screen.
He has a hand doctor appointment on Monday. He is doing a lot better with his hands, but is still struggling. We're doing a consult to see if we need to do splints again. He also learned how to play his drums. We bought them based on recommendation from the Toys R Us Differently Abled Kids Guide. He loves them. He doesn't know it yet, but Santa is bringing him a Mozart Music Cube for Christmas.
He figured out he has feet. He lifts his feet up and looks at them when his braces are off. He still has to wear his braces for 23 hours a day. We go back in Dec where they will hopefully cut it down to 16 or 18 hours. He can also nearly roll over in his braces and is almost sitting up.
And this is gross. A couple of weeks ago Spence had a diaper blowout at daycare. I got a call that said, "Spencer is ok, but he had a diaper explosion and it got into his braces. We had to take them off and wash them so he can't wear them for a while." I giggled hysterically after I knew he was ok. He enjoyed his afternoon out of his braces while his shoes dried.
Thursday, October 7, 2010
Nice shoes
So Spencer's feet are progressing along nicely. He had his brace check today, and everything looked great. Having 900 dollar shoes sure gets a baby a lot of attention. Today someone asked us where we got his shoes at because she thought they were awesome.
So we were at the hospital where we usually go to do feet stuff, but in a different part. When we were near the ortho department, Spencer kept staring at the dept giving it the nasiest look. Apparently he also gives the same look to his pt.
He doesn't shut up! Spencer babbles all the time. He'll be seven months old soon, and he is teething. He has been chewing on everything, thus slobbering on everything! He is 27 inches long and weighs 18 pounds. To think we never thought he would hit nine pounds! And he drank from a sippy cup yesterday! He's apparently not too good at it yet, but it's a start. It was the first time he was offered it!
So we were at the hospital where we usually go to do feet stuff, but in a different part. When we were near the ortho department, Spencer kept staring at the dept giving it the nasiest look. Apparently he also gives the same look to his pt.
He doesn't shut up! Spencer babbles all the time. He'll be seven months old soon, and he is teething. He has been chewing on everything, thus slobbering on everything! He is 27 inches long and weighs 18 pounds. To think we never thought he would hit nine pounds! And he drank from a sippy cup yesterday! He's apparently not too good at it yet, but it's a start. It was the first time he was offered it!
Friday, September 17, 2010
Braces and solids!
So Spencer got his braces today! He has the Ponseti Bar. He has been a little cranky, but he also switched formula yesterday to see if we can nip the reflux in the bud. Maybe little is an understatement, but I finally got him to go down.
So the brace itself is pretty cool. You can take the bar off to put him in high chairs and his exersaucer and such. We had no idea that it did that. We go back for a brace check in three weeks, so we'll see how long we need to do the bar for 23 hours a day. He said three months, but you never know.
Eating wise, Spencer has moved onto solids! We started giving him a bit of cereal to see what he would do. We met with our high risk team yesterday, and they said to not give him cereal because it's kind of gross. They gave us some tips on how to transition to solids and sippie cup. He still has to be fed every three hours, but we can do as much baby food as he's interested in. Twice a day seems good since we can get him once at home and once at daycare. He loved apricots (they fed him fruit first!) and he tried green beans and didn't hate them! As soon as he can take more than an ounce by sippy cup, we will re-evaluate.
So the brace itself is pretty cool. You can take the bar off to put him in high chairs and his exersaucer and such. We had no idea that it did that. We go back for a brace check in three weeks, so we'll see how long we need to do the bar for 23 hours a day. He said three months, but you never know.
Eating wise, Spencer has moved onto solids! We started giving him a bit of cereal to see what he would do. We met with our high risk team yesterday, and they said to not give him cereal because it's kind of gross. They gave us some tips on how to transition to solids and sippie cup. He still has to be fed every three hours, but we can do as much baby food as he's interested in. Twice a day seems good since we can get him once at home and once at daycare. He loved apricots (they fed him fruit first!) and he tried green beans and didn't hate them! As soon as he can take more than an ounce by sippy cup, we will re-evaluate.
Monday, September 6, 2010
Quick Update
Spencer had his tendon cut a week and a half ago. He was super crabby the first day, and then after that was back to his normal self. It only took four casts- with the exception of the cast that got cut off because he gained a pound over a weekend. He was fitted for his braces right before his surgery. We have another week and a half in this cast, and then we move onto Ponseti Braces! It will be so nice to give him a bath again.
Friday, August 20, 2010
Spencer the amazing weight gaining baby
We had an emergency cast removal on Monday. Spencer was sick last week and lost nearly a pound. He was casted on the last day of his illness. I noticed his cast was a little tight on Sunday night, but didn't think anything of it. We had an early morning appointment at his urologist and the doc said he was really swollen down there. Turns out his cast was way too tight and he had some swelling. They called over to ortho and Spencer got to have his cast soaked off in one of those pink little tubs. Luckily he's still tiny and fit. Turns out he gained his pound he lost back over the weekend.
We had to have his cast soaked off in the casting room. Everyone who walked by smiled at him, shocked to see a baby soaking in a tub. He didn't seem concerned when he heard the first saw that was kind of far away, but then the saw sound kept getting closer. He seemed mildy concerned. It was pretty adorable. One of the cast techs got me some fresh water and soap, and is was so awesome to be able to wash his leg properly for the first time in a month. Little acts of kindness...
He was recasted in nearly the same position. Apparently you can't position the foot too much too soon. Good news is that this was his last weekly cast. Technically it only took four casts. He gets his tendon cut next friday morning!
We had to have his cast soaked off in the casting room. Everyone who walked by smiled at him, shocked to see a baby soaking in a tub. He didn't seem concerned when he heard the first saw that was kind of far away, but then the saw sound kept getting closer. He seemed mildy concerned. It was pretty adorable. One of the cast techs got me some fresh water and soap, and is was so awesome to be able to wash his leg properly for the first time in a month. Little acts of kindness...
He was recasted in nearly the same position. Apparently you can't position the foot too much too soon. Good news is that this was his last weekly cast. Technically it only took four casts. He gets his tendon cut next friday morning!
Thursday, August 12, 2010
Here we go.
Sorry it took so long to post, dealing with an impending divorce. That's a whole another story.
Anyhow, Spencer has a couple of generic diagnostic terms. He has Pierre Robin Sequence and the Distal Arthgryposis diagnosis was confirmed. He'll hopefully outgrow the DA, but it could point to ODHO syndrome. They tested him for a couple of things, but are still scratching their heads. They said the more defects usually means more developmental delays, so we'll see. He's trying really had to sit up on his own, and is constantly smiling.
He gets his third cast tomorrow. I know I set this blog up to document his clubfoot treatments, but honestly, the casting has been pretty painless even with him being older. I'm just worried about when he has to go into the bar. He is a little cranky the first night of a new cast, but we give him some tylenol to help him rest, and he's good.
Anyhow, Spencer has a couple of generic diagnostic terms. He has Pierre Robin Sequence and the Distal Arthgryposis diagnosis was confirmed. He'll hopefully outgrow the DA, but it could point to ODHO syndrome. They tested him for a couple of things, but are still scratching their heads. They said the more defects usually means more developmental delays, so we'll see. He's trying really had to sit up on his own, and is constantly smiling.
He gets his third cast tomorrow. I know I set this blog up to document his clubfoot treatments, but honestly, the casting has been pretty painless even with him being older. I'm just worried about when he has to go into the bar. He is a little cranky the first night of a new cast, but we give him some tylenol to help him rest, and he's good.
Thursday, July 29, 2010
Day one
So today was the first cast. Spencer is doing the Ponsetti Method for his treatment of his club foot. It went really well. They said he would have to stay still for fifteen minutes, and I was thinking how on earth would we be able to do that? The doctor held his leg while they did plaster casting (it holds better) and Spence didn't screw it up. He doesn't seem to mind it too much except when he tries to get on his side. There are little bits of plaster everywhere!
It really sucks that he can't have a good bath for a while. We get to soak the casts off in a vinegar/water solution an hour before our appointment for the next weekly cast. I make take liberal time with this and do a real bath while we are at it. They want us to wrap wash rags around the cast and tie a plastic bag around it and bring him to the office that way.
I'm really pissed about the lack of resources online about appropriate toys for kids with club foot. I really want to get him an exersaucer, but there is no info online whether kids can use them or not. The ortho said one would be fine, but it can't be a bouncer. Surely there are other parents who have tried different toys and such. I think we might just buy a used one- that way we aren't out of a lot of money if we can't use it.
It really sucks that he can't have a good bath for a while. We get to soak the casts off in a vinegar/water solution an hour before our appointment for the next weekly cast. I make take liberal time with this and do a real bath while we are at it. They want us to wrap wash rags around the cast and tie a plastic bag around it and bring him to the office that way.
I'm really pissed about the lack of resources online about appropriate toys for kids with club foot. I really want to get him an exersaucer, but there is no info online whether kids can use them or not. The ortho said one would be fine, but it can't be a bouncer. Surely there are other parents who have tried different toys and such. I think we might just buy a used one- that way we aren't out of a lot of money if we can't use it.
Thursday, July 15, 2010
Very Quick Update
A few quick updates:
Spencer had a busy day. We cashed a giant check from the government (his backpay for SSI) and bought him some clothes and a couple of toys to help him along with his develpment. He went to the hand specialist today, and his doc said that if he had to bet what was up with his hands, he would say distal arthrogryposis- but he'll grow out of it. He potentially has an extra bone in his thumbs as well- we'll do x-rays in six months, but overall it was a good visit.
Then we went to have his super leaky g-tube looked at. He had it replaced with a smaller one which has seemed to work wonders. While they had his old button out, he shot out stomach goo and managed to shoot it about five feet. I didn't know whether to be embarrassed or impressed.
He had his first PT session this week and it went really well. He is doing amazing considering he was in the NICU for so long. We also went to the endocrinologist and she told me that he could potentially outgrow his hypothyroidism and there was no way that it could have done any damage to his brain in utero!
Spencer had a busy day. We cashed a giant check from the government (his backpay for SSI) and bought him some clothes and a couple of toys to help him along with his develpment. He went to the hand specialist today, and his doc said that if he had to bet what was up with his hands, he would say distal arthrogryposis- but he'll grow out of it. He potentially has an extra bone in his thumbs as well- we'll do x-rays in six months, but overall it was a good visit.
Then we went to have his super leaky g-tube looked at. He had it replaced with a smaller one which has seemed to work wonders. While they had his old button out, he shot out stomach goo and managed to shoot it about five feet. I didn't know whether to be embarrassed or impressed.
He had his first PT session this week and it went really well. He is doing amazing considering he was in the NICU for so long. We also went to the endocrinologist and she told me that he could potentially outgrow his hypothyroidism and there was no way that it could have done any damage to his brain in utero!
Saturday, July 10, 2010
The neighborly way
I am so fucking sick of dealing with Spencer's cannula. Every five seconds it's out of his nose- it's either right below his nose, in his mouth, or near his forehead. I'm tempted to duct tape the damn thing on.
Anyhow, ever since the g-tube pull out, Spencer has been leaking, even with the button. I'm going to call Monday if he hasn't stopped leaking by then and see if they can do anything about it. It would be awesome to not have to change sheets every day, and clothes like seventeen times a day- let alone we are burning through guaze.
Today we had an incident with his stroller. I feel like such a terrible parent. I guess it wasn't locked, and when I put him down in it, the whole thing collapsed. He seems fine, but we're keeping a close eye on him for swelling and such. Pretty sure it just scared him because he was easy to calm down. All the neighbors witnesses it, but none of them came to help. Assholes.
Anyhow, ever since the g-tube pull out, Spencer has been leaking, even with the button. I'm going to call Monday if he hasn't stopped leaking by then and see if they can do anything about it. It would be awesome to not have to change sheets every day, and clothes like seventeen times a day- let alone we are burning through guaze.
Today we had an incident with his stroller. I feel like such a terrible parent. I guess it wasn't locked, and when I put him down in it, the whole thing collapsed. He seems fine, but we're keeping a close eye on him for swelling and such. Pretty sure it just scared him because he was easy to calm down. All the neighbors witnesses it, but none of them came to help. Assholes.
Thursday, July 1, 2010
Quick note
Spencer didn't get casts today. It's going to happen in a few weeks. Only his club foot is getting casted. The doc is thinking he will have to wear an extra brace for his foot in addition to boots and bars until he's four. So we shall see. He thinks the other foot will correct itself. We really like his doc. He was impressed by the amount of knowledge I had and that I could use and pronounce terms correctly. That's what you get for being over educated and a planner.
He is getting his hands examined by a hand doc on like the 13th. It will be nice to know what the verdict is.
We also got our button today! It's amazing already. It has a tube that attaches to it, and it's so awesome to not move around tubes all the time.
He is getting his hands examined by a hand doc on like the 13th. It will be nice to know what the verdict is.
We also got our button today! It's amazing already. It has a tube that attaches to it, and it's so awesome to not move around tubes all the time.
Tuesday, June 29, 2010
Pop
Had our first trip to the ER with Spencer. I guess his g-tube got caught on his swing and I lifted him out to feed him. I lifted up his shirt and noticed it was missing. He didn't cry or anything. We then ventured over to the hospital to get it re-inserted. He did a really good job in spite of not having eaten yet. Now he's pretty tuckered out.
Friday, June 25, 2010
Oi
We had Spencer's first high risk appointment the other day. He is now on 20 calorie formula! It's so nice to be able to follow the directions on the can for formula. We also met with speech, ot and a social worker as well as his doc.
We were supposed to have gotten his first cast done last week, but I blanked out and went to the wrong location. So Spence gets out of it until next week. He is getting that done, his button put in and a blood test...poor kid.
After the high risk appointment the other day, we had an ENT followup. One of the aids went over his medical history and mentioned Pierre Robin Sequence and some other syndrome. It is most likely stuff that was ruled out, but maybe genetics will have a diagnosis or something for us in August. I'm going to look into it more at our next high risk appt in six weeks.
Spencer is doing really well. We have OT with speech and PT coming out to the house, probably starting the week after next. We have an IEP meeting of sorts next week to establish goals and such for him, and we should start after that. They come to the house for the meeting and everything.
We were supposed to have gotten his first cast done last week, but I blanked out and went to the wrong location. So Spence gets out of it until next week. He is getting that done, his button put in and a blood test...poor kid.
After the high risk appointment the other day, we had an ENT followup. One of the aids went over his medical history and mentioned Pierre Robin Sequence and some other syndrome. It is most likely stuff that was ruled out, but maybe genetics will have a diagnosis or something for us in August. I'm going to look into it more at our next high risk appt in six weeks.
Spencer is doing really well. We have OT with speech and PT coming out to the house, probably starting the week after next. We have an IEP meeting of sorts next week to establish goals and such for him, and we should start after that. They come to the house for the meeting and everything.
Thursday, June 17, 2010
First Steps
So today Spencer was supposed to start casting for his club foot. Problem was is I went brain dead and forgot that his appointment was in Mason instead of Cincinnati. It has been rescheduled for July 1st. I'm convinced it was all part of his plan...
He has been sick for the past couple of days with the poops. He has been on 20 cal formula and pedalyte. He has been in good spirits considering.
Over the past week I have met with First Steps twice. He will be recieving PT, OT and Speech therapies a couple times a week from them. I will find out when we can start and such pretty soon.
He has been sick for the past couple of days with the poops. He has been on 20 cal formula and pedalyte. He has been in good spirits considering.
Over the past week I have met with First Steps twice. He will be recieving PT, OT and Speech therapies a couple times a week from them. I will find out when we can start and such pretty soon.
Wednesday, June 9, 2010
Home.
So we are home. I think I was in denial about how much work taking care of a baby is. I have a feeling we won't be sleeping ever again.
Anyhow, I found out yesterday that ortho typically doesn't do boots and bars with clubbed feet anymore, which is great news. Spencer would go nuts. The casts are going to be bad enough with him. He has an ortho appointment, which we're not really sure if they will cast him then or not, but we are going to get his pictures done before just in case. Having a kid with a cast and oxygen would just be some too sad (but adorable).
We have a variety of appointments before August. Pretty much with every dept in the hospital. Plus doctor's appointments.
We did learn that Spencer will get SSI for at least a year and it's quite a substantial sum of money. It will help out so much so maybe one of us can go part time at work.
Anyhow, I found out yesterday that ortho typically doesn't do boots and bars with clubbed feet anymore, which is great news. Spencer would go nuts. The casts are going to be bad enough with him. He has an ortho appointment, which we're not really sure if they will cast him then or not, but we are going to get his pictures done before just in case. Having a kid with a cast and oxygen would just be some too sad (but adorable).
We have a variety of appointments before August. Pretty much with every dept in the hospital. Plus doctor's appointments.
We did learn that Spencer will get SSI for at least a year and it's quite a substantial sum of money. It will help out so much so maybe one of us can go part time at work.
Monday, June 7, 2010
Yay!
Spencer is coming home tomorrow! He showed improvement on his sleep study, and they have turned his oxygen down a bit. He will be coming home on a 1/4 liter at 100%. He is still on 24 cal formula, but they might stop giving him protein with it. He has a ton of appointments in the next month, but at least he's coming home.
The best feeling was walking out of the RCNIC and realizing it would be the last time we would walk out of there without him.
We are last minute finishing everything. His dad is currently struggling with his playpen, and I'm going to go buy some bottles. He uses the Habermann bottles (at 30 bucks a pop, luckily we scored some), but we are going to use regular bottles as easy storage. I am taking the next few days off work to stay home and bond.
We won't be doing much staying at home. We have a WIC appointment on Wed and a bazillion other appointments over the next month.
The best feeling was walking out of the RCNIC and realizing it would be the last time we would walk out of there without him.
We are last minute finishing everything. His dad is currently struggling with his playpen, and I'm going to go buy some bottles. He uses the Habermann bottles (at 30 bucks a pop, luckily we scored some), but we are going to use regular bottles as easy storage. I am taking the next few days off work to stay home and bond.
We won't be doing much staying at home. We have a WIC appointment on Wed and a bazillion other appointments over the next month.
Friday, June 4, 2010
Waiting
So Spencer went to sleep study last night instead of tonight. We were hoping that we would have the results back today, but alas they did not come in. Since it's Friday, they probably won't come in until Monday. If he did better, we could be home by Tues or Wed. Needless to say, if he doesn't, we'll be devastated.
Today I was trying to bolus feed Spencer and forgot to take the cap off. I couldn't figure out for the life of me why in the hell it wasn't getting down the tube. And then after I figured the whole mess out, I got milk everywhere. And there Spencer was, contently sucking away on his pacifier, while I was getting his dinner everywhere.
He got to go to the playroom today. It's not much of a playroom, but it's a change of scenery. We were convinced he was going to have a ball. He cried nearly the whole time he was strolled down the hallways and whenever his paci fell out of his mouth the whole ten minutes we were at the playroom. At least we'll have some interesting pictures. There is one of him kind of sleeping instead of playing. Figures.
I discovered today that Spencer doesn't have a toe nail on his baby toe on his left foot. It was the toe that was bent all crazy when he was born, that is slowly righting itself. So we'll see if the nail ever comes in.
Today I was trying to bolus feed Spencer and forgot to take the cap off. I couldn't figure out for the life of me why in the hell it wasn't getting down the tube. And then after I figured the whole mess out, I got milk everywhere. And there Spencer was, contently sucking away on his pacifier, while I was getting his dinner everywhere.
He got to go to the playroom today. It's not much of a playroom, but it's a change of scenery. We were convinced he was going to have a ball. He cried nearly the whole time he was strolled down the hallways and whenever his paci fell out of his mouth the whole ten minutes we were at the playroom. At least we'll have some interesting pictures. There is one of him kind of sleeping instead of playing. Figures.
I discovered today that Spencer doesn't have a toe nail on his baby toe on his left foot. It was the toe that was bent all crazy when he was born, that is slowly righting itself. So we'll see if the nail ever comes in.
Friday, May 28, 2010
Maybe?
So it seems like Spencer might get to come home the second week of June. Discharge Services came to talk to me. They told me that the hospital's service comes to deliver everything. They will deliver his oxygen, and the supplies that go with it and then anything he might need for his g-tube care...except the cleaning supplies like q-tips. If Spencer does come home on oxygen, we will get a portable tank, tanks for around the house, and a refill system. The portable tank is super tiny and in a backpack. Pretty awesome. We will also be able to go visit my husband's parents since the tanks for the weekend are small enough to fit in my VW Beetle.
His sleep study is on June 4th. We'll know the results most likely on Monday, and then we can probably get him home that week. We're trying to not get our hopes up, but it seems like he'll get to come home. His breathing is so much better. He is such a happier kid too. He has been sleeping so good! I think they will do a test to see how long he can tolerate room air, so then we will know about how much oxygen he needs and such at home.
If he doesn't improve in sleep study, then he'll most likely be getting a jaw distraction. We're really hoping it won't come to it. He wouldn't tolerate it well. He has been cranky for two days because he got his shots. I don't think he would be able to use his binky for a while, which is his crutch.
His sleep study is on June 4th. We'll know the results most likely on Monday, and then we can probably get him home that week. We're trying to not get our hopes up, but it seems like he'll get to come home. His breathing is so much better. He is such a happier kid too. He has been sleeping so good! I think they will do a test to see how long he can tolerate room air, so then we will know about how much oxygen he needs and such at home.
If he doesn't improve in sleep study, then he'll most likely be getting a jaw distraction. We're really hoping it won't come to it. He wouldn't tolerate it well. He has been cranky for two days because he got his shots. I don't think he would be able to use his binky for a while, which is his crutch.
Tuesday, May 25, 2010
Is all government departments so useless?
Seems like the supraglottoplasty went well. He is so quiet. He had a bit of a cough yesterday, but nothing to be concerned about. His nurse said that he had been a little congested.
I've decided that g-tubes are the nastiest thing ever. Today, he was leaking pretty good out of it, and there was slimy goo everywhere. Super gross. They have him on feeds over an hour because he hasn't been tolerating feeds well since the surgery. They hope to get him back to 80ml tomorrow and we'll go from there. He was at 85 before the surgery.
Today I got the runaround from Medicade. I'm trying to get Spencer's medical coverage through the state backdated. His medical card coverage started on May 1st, which a month and a half after he was admitted. He got the medical card because we got approved for SSI! It's bitter-sweet because we never thought he would be considered disabled, but the extra insurance will help a lot. Medicade will pay anything our insurance doesn't pay. Anyhow, apparently to get our medicade backdated, we have to have a case worker. To have a case worker you have to apply for medicade. Getting it through SSI doesn't count as applying for medicade even though we have it...doesn't make sense. I went to the office to apply for medicade and I've decided that nearly all the people that work there are idiots. I clearly explained the situation and that it was for my son. They thought I was applying for myself. Sheesh. Anyhow, I have an appointment in nearly a month from now to probably get laughed at because they set me up for the wrong meeting. I called my financial officer at the hospital to see if she knew of anything to do.
And now I rant. It seems strange to me that when I need a service of the government, I can't get help. However, if I had a bunch of kids and no job, I would have no problem getting the services my son needs. This is maddening. Even if I wasn't married to my husband, I could have gotten medicade while pregnant and we wouldn't be in this mess. If one person took five minutes to come to the hospital, view our situation and look at our bank statement, they would know we were legit. I know there is protocol for a reason, but it seems useless anyhow because the system is taken advantage of anyway. I know there are good people who have medicade and welfare, which is good. I'm all for those people getting my tax dollars. But the people that annoy me are the ones that bust out five kids, don't attempt to work, and treat their kids like crap.
End of rant.
My husband and I were talking about everything last night. It was a bad mommy night last night. I was having a hard time and was pretty mopey. I realized that having a sick kid has made us better parents. We appreciate him so much, and we know how precious he is, in spite of his flaws. We have become stronger people, although having a sick kid makes you strong, but vulnerable. I am an absolute rock now unless it's about my kid. I can't even think about him without getting tears in my eyes sometimes. I think of all the lost time, but then realize that the parents of normal situations must feel the same way when they are at work. And we didn't lose that time, I realize as well, it just passed by, which is what time does.
I've decided that g-tubes are the nastiest thing ever. Today, he was leaking pretty good out of it, and there was slimy goo everywhere. Super gross. They have him on feeds over an hour because he hasn't been tolerating feeds well since the surgery. They hope to get him back to 80ml tomorrow and we'll go from there. He was at 85 before the surgery.
Today I got the runaround from Medicade. I'm trying to get Spencer's medical coverage through the state backdated. His medical card coverage started on May 1st, which a month and a half after he was admitted. He got the medical card because we got approved for SSI! It's bitter-sweet because we never thought he would be considered disabled, but the extra insurance will help a lot. Medicade will pay anything our insurance doesn't pay. Anyhow, apparently to get our medicade backdated, we have to have a case worker. To have a case worker you have to apply for medicade. Getting it through SSI doesn't count as applying for medicade even though we have it...doesn't make sense. I went to the office to apply for medicade and I've decided that nearly all the people that work there are idiots. I clearly explained the situation and that it was for my son. They thought I was applying for myself. Sheesh. Anyhow, I have an appointment in nearly a month from now to probably get laughed at because they set me up for the wrong meeting. I called my financial officer at the hospital to see if she knew of anything to do.
And now I rant. It seems strange to me that when I need a service of the government, I can't get help. However, if I had a bunch of kids and no job, I would have no problem getting the services my son needs. This is maddening. Even if I wasn't married to my husband, I could have gotten medicade while pregnant and we wouldn't be in this mess. If one person took five minutes to come to the hospital, view our situation and look at our bank statement, they would know we were legit. I know there is protocol for a reason, but it seems useless anyhow because the system is taken advantage of anyway. I know there are good people who have medicade and welfare, which is good. I'm all for those people getting my tax dollars. But the people that annoy me are the ones that bust out five kids, don't attempt to work, and treat their kids like crap.
End of rant.
My husband and I were talking about everything last night. It was a bad mommy night last night. I was having a hard time and was pretty mopey. I realized that having a sick kid has made us better parents. We appreciate him so much, and we know how precious he is, in spite of his flaws. We have become stronger people, although having a sick kid makes you strong, but vulnerable. I am an absolute rock now unless it's about my kid. I can't even think about him without getting tears in my eyes sometimes. I think of all the lost time, but then realize that the parents of normal situations must feel the same way when they are at work. And we didn't lose that time, I realize as well, it just passed by, which is what time does.
Tuesday, May 18, 2010
Long day
Spencer had a MLMB scope and a supraglottoplasty done yesterday morning. They removed some extra tissue from his floppy airway, and things look a lot better. His tongue is still an issue in blocking his airway, but if the surgery yesterday worked, he won't have to get a jaw distraction- at least not yet. If he shows improvement on a sleep study in two weeks, they will just recommend oxygen therapy and reevaluate in six months. I also got pictures of his insides, which I figure he can take to show and tell when he starts school.
Tonight he had an episode of tachycardia and was up in the 225s. They are testing his potassium and electrolytes and as long as he doesn't have a repeat episode. I think he just worked himself up. He hates being inhibated, and will be until the morning in case of swelling. The creepiest part about it is that he doesn't make any noise. I can see him crying, but not hear him. It's heartbreaking.
Tonight he had an episode of tachycardia and was up in the 225s. They are testing his potassium and electrolytes and as long as he doesn't have a repeat episode. I think he just worked himself up. He hates being inhibated, and will be until the morning in case of swelling. The creepiest part about it is that he doesn't make any noise. I can see him crying, but not hear him. It's heartbreaking.
Friday, May 14, 2010
supraglottoplasty..say that three times fast
On Tuesday Spencer is getting an MLMB done and a supraglottoplasty to relieve some of the swelling on his laraynx. If this works, he won't have to have a jaw distraction and he will hopefully get to come home. We're not too optimistic, because often these procedures have to be repeated and don't always solve the problem- but we are hopeful. The "surgery" is being done on his 2 month birthday, which sucks, but at least it's not as invasive as his g-tube placement.
Otherwise, he's doing pretty good. They finally switched his formula to soy, and he just got bumped up to 85ml a feed. He is a tad over nine pounds now. He is on 22 calorie formula instead of the normal of 20, so he'll get bigger. His breathing is getting better and he seems to be resting better too.
We are waiting on an orth consult to figure out what the plan is about his feet and hands.
Otherwise, he's doing pretty good. They finally switched his formula to soy, and he just got bumped up to 85ml a feed. He is a tad over nine pounds now. He is on 22 calorie formula instead of the normal of 20, so he'll get bigger. His breathing is getting better and he seems to be resting better too.
We are waiting on an orth consult to figure out what the plan is about his feet and hands.
Tuesday, May 4, 2010
Meeting
We had a meeting with outpatient services, an LPN, one of Spencer's docs and our speech path today. They have a meeting with parents every once in a while to address concerns that may be left unanswered from rounds and such.
We should be getting another orthopedics consult and a urology consult. They are also going to alter his formula so he starts gaining more weight.
We told worst case scenario is a trach or distraction or other surgery, which would keep him in another six weeks or so. Best case is they just let him grow.
We should be getting another orthopedics consult and a urology consult. They are also going to alter his formula so he starts gaining more weight.
We told worst case scenario is a trach or distraction or other surgery, which would keep him in another six weeks or so. Best case is they just let him grow.
Monday, May 3, 2010
Grande Finale
SO the end to a rotten day included going to the hospital and getting there right after Spencer popped out his g-tube for the first time. The nurse was doing his assessment and he was crying pretty hard. She said it popped right out. We had gotten there right in time to see stomach goo coming out the hole. Super gross.
The surgeon came up and inserted the tube and filled it with a little more water than last time. He didn't seem to mind getting it put back in. The area is really red, remaining from the surgery and from the popping. He went down to xray and had one done with contrast to make sure it was placed properly, and fell right to sleep when he came back up.
The surgeon came up and inserted the tube and filled it with a little more water than last time. He didn't seem to mind getting it put back in. The area is really red, remaining from the surgery and from the popping. He went down to xray and had one done with contrast to make sure it was placed properly, and fell right to sleep when he came back up.
Update
We thought Spencer was going to get to come home early this week. He is not. Of course I am devastated. His sleep study didn't go so well, so now they are exploring other options. If it is fact his chin we have two horrific options, both resulting in a prolonged hospital stay. One is expanding his jaw bone, and the other is a traceotomy.
Figures he would still be in the hospital for my first mother's day.
They are planning on scoping him again. Currently I'm pissed off at the world. I'm pissed off at his LPN for getting my hopes up (they were preparing us for the likelihood of him coming home), the surgeons who will want to do surgery, God, fate, myself for various reasons, my drug addicted family that seems to have perfect children- pretty much everything. This sucks.
Figures he would still be in the hospital for my first mother's day.
They are planning on scoping him again. Currently I'm pissed off at the world. I'm pissed off at his LPN for getting my hopes up (they were preparing us for the likelihood of him coming home), the surgeons who will want to do surgery, God, fate, myself for various reasons, my drug addicted family that seems to have perfect children- pretty much everything. This sucks.
Monday, April 26, 2010
Ah SSI!
Spencer is doing really well with his G-tube. He has spit up a little, but it's expected at first. It's an interesting but completely gross piece of medical equipment. He can push the milk back out of it if he passes gas or is crying, which when you think about it is kind of gross. If you aren't careful, when you open up his spout(?) his last meal can also leak out a bit. It's a lot easier to use than the ng tube, but requires more care which we are learning.
We are waiting for his follow up sleep study, and hopefully if that goes well, we will know if he gets to come home or not. If he does badly, he could be in there a lot longer.
We managed to get into the hospital's social security workshop. Applying for social security sucks. I don't think I would be able to do it without being able to attach his medical records. I guess we'll see if he gets it. We are also applying for financial assistance through the state and the hospital. He'll be able to at least get institutionalized medicare for anything after hospital stay day 31, which will cover his surgery.
We are waiting for his follow up sleep study, and hopefully if that goes well, we will know if he gets to come home or not. If he does badly, he could be in there a lot longer.
We managed to get into the hospital's social security workshop. Applying for social security sucks. I don't think I would be able to do it without being able to attach his medical records. I guess we'll see if he gets it. We are also applying for financial assistance through the state and the hospital. He'll be able to at least get institutionalized medicare for anything after hospital stay day 31, which will cover his surgery.
Monday, April 19, 2010
Surprise and surgery
Spencer had his G-tube placed today. I think I'm taking it harder than he is. We decided on the G-tube because we feel like his eating difficulties weren't going to solve themselves in a reasonable amount of time. Plus, who wants a tube sticking out of their nose all the time? I feel like we made the right decision because his eating has actually gotten worse instead of better.
The surgery went fine. After the surgery, they looked at his airway. The doctor concluded his small chin is the main source of his breathing issues. After he heals from surgery, they are going to re do his sleep study he had a while back, but this time with proper oxygen support. We're really hoping they don't decide to do a jaw distraction.
The surgeon was going to attempt his circumcision, but didn't because the baby's urethra exit hole (I'm a girl, I don't know what the parts are called:) may be in the wrong position. Protocol states if the surgeon thinks it's iffy, then not to mess with it and recommend a consult. While it's probably nothing, it still makes me paranoid.
I took my husband home after Spencer made it back to his room. He worked overnight the night before and didn't get much sleep the day before, plus had his own surgery last Friday (What a month, right?). I went to buy a preemie outfit, which I will discuss in a moment, and then back to see the baby. His IV had become misplaced and Spencer started to wake up. He opened his eyes, which really surprised me because last time he was sedated he slept for two and half days. He looked relieved to see me. He can't really cry because the tube, and his breathing is silent which is creepy for me. He always makes noise because of his floppy airway.
He still has a breathing tube down his throat which they will slowly wean him off of. He has been sucking on it like his pacifier. He probably thinks it's awesome because it's always there. He can't keep a normal pacifier in his mouth because of suction issues, so either has to have it held or somehow propped up against his mouth. I'm thinking about sewing a pacifier onto a beanie baby once he gets home. They have something similar at the hospital, but it has a green nipple pacifier on it that he doesn't seem to like very much.
It's been a stressful and long day. I'm glad my little boy is ok, but it sucks that he has to go down this road anyway. At least he will be strong.
His future wife was born yesterday. Her mother was only 30 weeks pregnant, so it was a surprise. We are very excited at meeting her hopefully tomorrow. The baby and mom are both doing great. For being so small she is regulating her body temp and is breathing on her own. We are very relieved that everything is ok and I went to buy her an outfit. She hadn't even had her baby shower yet!
The surgery went fine. After the surgery, they looked at his airway. The doctor concluded his small chin is the main source of his breathing issues. After he heals from surgery, they are going to re do his sleep study he had a while back, but this time with proper oxygen support. We're really hoping they don't decide to do a jaw distraction.
The surgeon was going to attempt his circumcision, but didn't because the baby's urethra exit hole (I'm a girl, I don't know what the parts are called:) may be in the wrong position. Protocol states if the surgeon thinks it's iffy, then not to mess with it and recommend a consult. While it's probably nothing, it still makes me paranoid.
I took my husband home after Spencer made it back to his room. He worked overnight the night before and didn't get much sleep the day before, plus had his own surgery last Friday (What a month, right?). I went to buy a preemie outfit, which I will discuss in a moment, and then back to see the baby. His IV had become misplaced and Spencer started to wake up. He opened his eyes, which really surprised me because last time he was sedated he slept for two and half days. He looked relieved to see me. He can't really cry because the tube, and his breathing is silent which is creepy for me. He always makes noise because of his floppy airway.
He still has a breathing tube down his throat which they will slowly wean him off of. He has been sucking on it like his pacifier. He probably thinks it's awesome because it's always there. He can't keep a normal pacifier in his mouth because of suction issues, so either has to have it held or somehow propped up against his mouth. I'm thinking about sewing a pacifier onto a beanie baby once he gets home. They have something similar at the hospital, but it has a green nipple pacifier on it that he doesn't seem to like very much.
It's been a stressful and long day. I'm glad my little boy is ok, but it sucks that he has to go down this road anyway. At least he will be strong.
His future wife was born yesterday. Her mother was only 30 weeks pregnant, so it was a surprise. We are very excited at meeting her hopefully tomorrow. The baby and mom are both doing great. For being so small she is regulating her body temp and is breathing on her own. We are very relieved that everything is ok and I went to buy her an outfit. She hadn't even had her baby shower yet!
Wednesday, April 7, 2010
Two steps forward one step back
Update on the Spencer. He is fairly cranky, as I would be too.
He has the following:
Heart murmur
Floppy airway
Cleft Palate
Recessed chin
Club Feet
Slightly defective hands (as far as I know there is no medical definition)
Extra eye folds
Undesended testicles
Low set ears
hyperthyroidism
and he is absolutely perfect. I would be pissed to if I had people poking at me all the time. He is still on oxygen. They were going to wean him off of it, but he is getting surgery to have a g tube placed soon, so it was kind of silly to. Everything in his brain is in the right place, so hopefully he doesn't have any MR. I don't think he does. He has a lot of things in the world figured out.
1. If screaming doesn't work, then go to sleep. He had a scope down his throat the other day, and screamed bloody murder. He figured out that wouldn't make it stop, so he fell asleep instead.
2. Mommy is a sucker. Look sad and pathetic and she will pick you up.
3. Boppys are the most comfortable thing on the planet.
I put a mirror in his crib the other day, and he immediately starting looking in it. He also can lift his head up pretty good for a three week old.
Found out today that he may need to get surgery to get his chin to grow. I think they are debating it. So we'll see. We are very eager to get him home, even though it still seems like it will be forever away.
He has the following:
Heart murmur
Floppy airway
Cleft Palate
Recessed chin
Club Feet
Slightly defective hands (as far as I know there is no medical definition)
Extra eye folds
Undesended testicles
Low set ears
hyperthyroidism
and he is absolutely perfect. I would be pissed to if I had people poking at me all the time. He is still on oxygen. They were going to wean him off of it, but he is getting surgery to have a g tube placed soon, so it was kind of silly to. Everything in his brain is in the right place, so hopefully he doesn't have any MR. I don't think he does. He has a lot of things in the world figured out.
1. If screaming doesn't work, then go to sleep. He had a scope down his throat the other day, and screamed bloody murder. He figured out that wouldn't make it stop, so he fell asleep instead.
2. Mommy is a sucker. Look sad and pathetic and she will pick you up.
3. Boppys are the most comfortable thing on the planet.
I put a mirror in his crib the other day, and he immediately starting looking in it. He also can lift his head up pretty good for a three week old.
Found out today that he may need to get surgery to get his chin to grow. I think they are debating it. So we'll see. We are very eager to get him home, even though it still seems like it will be forever away.
Monday, March 29, 2010
Short update
Spencer's test results came back yesterday. He has no commonly known genetic ailments. This doesn't mean he doesn't have one, but it could also mean he doesn't have anything. We won't know for sure until he's older.
We have to decide how we'll feed him after he gets home, as a backup for his bottle feedings. He's still having trouble getting the hang of the bottle thing, so we either have to have a temporary tube in his nose, or a more permanent one in his stomach. We're going to talk to the speech pathologist before we make up our mind.
They are going to do his feet outpatient. We're not exactly sure what they are planning, but it seems like Ponseti. I'm sure they will do his first casts before he gets to come home.
We have to decide how we'll feed him after he gets home, as a backup for his bottle feedings. He's still having trouble getting the hang of the bottle thing, so we either have to have a temporary tube in his nose, or a more permanent one in his stomach. We're going to talk to the speech pathologist before we make up our mind.
They are going to do his feet outpatient. We're not exactly sure what they are planning, but it seems like Ponseti. I'm sure they will do his first casts before he gets to come home.
Wednesday, March 24, 2010
Waiting Game
Spencer James was born on the 18th at 3:01 om. I had an elective c-section because chances were that's how I was going to have to have him anyway. It was pretty scary, but all worth it once it was over. I remember panicking thinking he could just stay inside me forever.
Our first night together was perfect. He was having trouble eating, but I figured he would soon get the hang of it. Then the next morning the peds doctor took a look at him and sent him to Children's Hospital. I had to stay at the hospital. Handing him to the nurse was the hardest thing I have ever done. My husband rode over with him in the ambulance.
Spencer has clubbed feet, a cleft palate, some muscular thing with his hands, and a slight but completely normal heart murmur. He is getting some genetic testing done, and the results should be in within another week. As parents we have no idea if he's MR or not, or what he has, which is incredibly frustrating and heart breaking. Leaving him at the hospital every night is really hard. We can't wait to bring him home.
Today they fitted his hands with some braces. He hyper extends his hands, so they are trying to get them to straighten them out a bit. Tomorrow we'll learn what we're going to do about his feet. One foot is clubbed, and something else is going on with the other. We're working with a speech pathologist on his feeding, and he is using a bottle with a special nipple on it. He's starting to get the hang of it. He doesn't open his eyes a whole lot yet, but he's starting to a little more each day.
Our first night together was perfect. He was having trouble eating, but I figured he would soon get the hang of it. Then the next morning the peds doctor took a look at him and sent him to Children's Hospital. I had to stay at the hospital. Handing him to the nurse was the hardest thing I have ever done. My husband rode over with him in the ambulance.
Spencer has clubbed feet, a cleft palate, some muscular thing with his hands, and a slight but completely normal heart murmur. He is getting some genetic testing done, and the results should be in within another week. As parents we have no idea if he's MR or not, or what he has, which is incredibly frustrating and heart breaking. Leaving him at the hospital every night is really hard. We can't wait to bring him home.
Today they fitted his hands with some braces. He hyper extends his hands, so they are trying to get them to straighten them out a bit. Tomorrow we'll learn what we're going to do about his feet. One foot is clubbed, and something else is going on with the other. We're working with a speech pathologist on his feeding, and he is using a bottle with a special nipple on it. He's starting to get the hang of it. He doesn't open his eyes a whole lot yet, but he's starting to a little more each day.
Wednesday, March 17, 2010
Baby today?
I can't sleep, which is funny since I haven't really slept in like two days.
Anyhow...
On Monday the baby was non-reactive to both his stress test and biophysical profile. SO I got admitted, which led me to believe that we would eventually get a baby during our hospital stay. I was grossly mistaken.
My doctor, who is now know as 'the Sadist', ordered me to be hooked up to a fetal monitor for 24 hours. Fun thing about our baby...he doesn't stay hooked up to anything for any duration of time because I have tons of fluid for him to play in. I had to lay still a lot, on a really crappy hospital bed (which ironically they were getting ready to upgrade me to a better bed right before I got to leave), which is painful when you're super pregnant.
I also had an IV in my hand, which started to really bother me in the middle of the night. Luckily, they took me off the monitor for a few hours during the night so I could get some sleep. Too bad the bed sucked, my IV machine kept on going off throughout the night, and I had to pee at least once an hour. The nurse offered me something to help me sleep, which I sucked it up and took around one. It kicked in right around when she woke me up to be hooked up again at 5:30.
But it was ok, right? I mean, if my baby, who is amazing at failing tests, failed his biophysical in the morning, that would mean I got to have him. The not sadist doctor came in and even talked about having to do a c-section and such. And he was going to be bad during his tests, right? Our little monster was in full crazy baby mode (he really likes pancakes apparently). No baby for us that day.
I now have the luxury of going to the hospital every day (which may include the weekend) to get tests done. If he fails one, they will evaluate. If he fails one after next Monday, they will cut me on open because he will be 39 weeks. He gets his growth measured on Thursday, which if he falls under ten percent (he was at 14 the last time), they will take him.
On a plus side, I'm now banned from going to work and I'm supposed to take it easy. Which is easy for them to say considering I'll be stuck at home with nothing to do. That's when I go stir crazy and start organizing and such- I can't even take a week vacation without starting a project. At least the living room needs cleaned, and I have less energy than ever, so maybe I'll get it done. Watch, now that I'm off work, they will take him tomorrow.
Anyhow...
On Monday the baby was non-reactive to both his stress test and biophysical profile. SO I got admitted, which led me to believe that we would eventually get a baby during our hospital stay. I was grossly mistaken.
My doctor, who is now know as 'the Sadist', ordered me to be hooked up to a fetal monitor for 24 hours. Fun thing about our baby...he doesn't stay hooked up to anything for any duration of time because I have tons of fluid for him to play in. I had to lay still a lot, on a really crappy hospital bed (which ironically they were getting ready to upgrade me to a better bed right before I got to leave), which is painful when you're super pregnant.
I also had an IV in my hand, which started to really bother me in the middle of the night. Luckily, they took me off the monitor for a few hours during the night so I could get some sleep. Too bad the bed sucked, my IV machine kept on going off throughout the night, and I had to pee at least once an hour. The nurse offered me something to help me sleep, which I sucked it up and took around one. It kicked in right around when she woke me up to be hooked up again at 5:30.
But it was ok, right? I mean, if my baby, who is amazing at failing tests, failed his biophysical in the morning, that would mean I got to have him. The not sadist doctor came in and even talked about having to do a c-section and such. And he was going to be bad during his tests, right? Our little monster was in full crazy baby mode (he really likes pancakes apparently). No baby for us that day.
I now have the luxury of going to the hospital every day (which may include the weekend) to get tests done. If he fails one, they will evaluate. If he fails one after next Monday, they will cut me on open because he will be 39 weeks. He gets his growth measured on Thursday, which if he falls under ten percent (he was at 14 the last time), they will take him.
On a plus side, I'm now banned from going to work and I'm supposed to take it easy. Which is easy for them to say considering I'll be stuck at home with nothing to do. That's when I go stir crazy and start organizing and such- I can't even take a week vacation without starting a project. At least the living room needs cleaned, and I have less energy than ever, so maybe I'll get it done. Watch, now that I'm off work, they will take him tomorrow.
Thursday, March 11, 2010
Kill the daddy
My ultra sound tech said the doc was full of it when I asked about the possibility of his feet looking fine. I think I've decided that my practice is full of crazies.
My husband turned my cell phone off while I took a nap to get some rest. The doctor's office called wanting to see when my next NST is so they can get me in for a consult to go ahead and induce my labor. I didn't get the message until after the office closed, so I guess I'll learn more tomorrow.
My fluid was at all all time high today- 42cm. I think I'm just going to end up exploding.
My husband turned my cell phone off while I took a nap to get some rest. The doctor's office called wanting to see when my next NST is so they can get me in for a consult to go ahead and induce my labor. I didn't get the message until after the office closed, so I guess I'll learn more tomorrow.
My fluid was at all all time high today- 42cm. I think I'm just going to end up exploding.
Tuesday, March 9, 2010
He is or he isn't
Interesting past couple of weeks. Here we go:
First off- I have been diagnosed with Polyhydramnios, which means I have way too much amniotic fluid. Very interesting because I'm not diabetic and usually the problems the baby is associated with not enough goo. I was told I have four time the amount of fluid I should have which is adding to the stress on my body. I've been ranging from 29-34 cm of fluid. They have been referring to my uterus as a big sea and the baby a little fish. Today they called it an ocean.
Secondly- My blood pressure has been surprisingly low. Like lower than it has been when I'm not knocked up.
I was held hostage at the doctor's office last week. They never got my test results for my three hour glucose screen and since the Poly is associated with diabetes, he kept me there until the lab found my results. Luckily the results weren't of something that could kill me (sarcasm). They tracked them down, and I was freed. Doc still thinks I might have late onset, and I have to go do another glucose test in the morning, even though this brings me to...
They baby is super small. 14th percentile because he has little arms and legs. He was five pounds and four ounces a week ago. Babies who mother's have diabetes are gianormous. But I shall humor the doc just to be safe.
Almost had a baby today and yesterday. Yesterday the baby didn't do his practice breathing which made me fail my biophysical. Typically if you're as far along as I am they make you deliver if you fail. The doc told me to try again today. I wasn't afraid of having a baby before yesterday when I realized that I have to have a baby, and soon.
Today he had a heart rate of 110 at my high risk (yup, officially high risk) appointment, which is low for him. Doc freaks out and tells me to prepare the thought in my head that I might have some spawn today. I go get my bio first. The little shit did nothing until the very bitter end. Talk about scaring his momma. He then almost cooperated for his stress test. She actually got some of a reading, which is more than they normally ever do.
Doc told me that if I didn't have the baby today that they will schedule my induction for within two weeks. They want to take him before 40 weeks.
Lastly, the doc said today that his feet appeared normal in the last growth scan. I have seen my baby's twisted foot on scan with my own eyes. We're not getting our hopes up, but I think I will find humor in the irony if he doesn't have club feet. We're mentally prepared to take care of his feet and for his future appointments and the sleepless nights. We know it could be much, much worse and are thankful that it's not. For him to not have clubbed feet would be amazing, but I don't think there's a chance in hell his feet are normal.
First off- I have been diagnosed with Polyhydramnios, which means I have way too much amniotic fluid. Very interesting because I'm not diabetic and usually the problems the baby is associated with not enough goo. I was told I have four time the amount of fluid I should have which is adding to the stress on my body. I've been ranging from 29-34 cm of fluid. They have been referring to my uterus as a big sea and the baby a little fish. Today they called it an ocean.
Secondly- My blood pressure has been surprisingly low. Like lower than it has been when I'm not knocked up.
I was held hostage at the doctor's office last week. They never got my test results for my three hour glucose screen and since the Poly is associated with diabetes, he kept me there until the lab found my results. Luckily the results weren't of something that could kill me (sarcasm). They tracked them down, and I was freed. Doc still thinks I might have late onset, and I have to go do another glucose test in the morning, even though this brings me to...
They baby is super small. 14th percentile because he has little arms and legs. He was five pounds and four ounces a week ago. Babies who mother's have diabetes are gianormous. But I shall humor the doc just to be safe.
Almost had a baby today and yesterday. Yesterday the baby didn't do his practice breathing which made me fail my biophysical. Typically if you're as far along as I am they make you deliver if you fail. The doc told me to try again today. I wasn't afraid of having a baby before yesterday when I realized that I have to have a baby, and soon.
Today he had a heart rate of 110 at my high risk (yup, officially high risk) appointment, which is low for him. Doc freaks out and tells me to prepare the thought in my head that I might have some spawn today. I go get my bio first. The little shit did nothing until the very bitter end. Talk about scaring his momma. He then almost cooperated for his stress test. She actually got some of a reading, which is more than they normally ever do.
Doc told me that if I didn't have the baby today that they will schedule my induction for within two weeks. They want to take him before 40 weeks.
Lastly, the doc said today that his feet appeared normal in the last growth scan. I have seen my baby's twisted foot on scan with my own eyes. We're not getting our hopes up, but I think I will find humor in the irony if he doesn't have club feet. We're mentally prepared to take care of his feet and for his future appointments and the sleepless nights. We know it could be much, much worse and are thankful that it's not. For him to not have clubbed feet would be amazing, but I don't think there's a chance in hell his feet are normal.
Tuesday, February 23, 2010
Ramble.
Saturday was Spencer's (that's what we've been calling him) baby shower. He got all kinds of great stuff. He did manage to get a pair of shoes, which an out of town friend sent with my mother in law. I guess she missed the memo. We laughed it off and I sent her a message later thanking her and then telling her about his feet. She took it very well.
A lot of people got bath stuff and onesies. Onesies are safe, which I told everyone. One person got a pack of gowns and another a combo gown/footless sleeper. He has enough lotion to last him until college, which I'm exchanging some of it tomorrow.
My in-laws came in for the shower, so we went shopping during their visit. After the shower we went to Babies-R-Us and spent a small fortune- mostly on outfits. I think I picked out what will be his homecoming outfit. The next day we went to Target to track down his high chair and we got the Baby Einstein Baby Neptune play mat set. If the baby doesn't like it, the cats surely will. My mother-on-law bought him something very similar to the glow worm dolls we had when I was little. It plays a lot of music.
We picked up his crib set over the weekend. We figured he would destroy his crib between casts and braces, so we bought a cheaper set from Walmart. It got really great reviews- it's the Baby Relax three piece set. We special ordered it in natural because I think cherry wood looks weird. We'll be setting it up sometime this week, which I'm really excited about.
I have to go for my stress test in the morning, which stresses me out! My belly has gone numb, which apparently is common. I read it's because of stretching nerves. I'll double check when I'm there tomorrow, just to be on the safe side.
A lot of people got bath stuff and onesies. Onesies are safe, which I told everyone. One person got a pack of gowns and another a combo gown/footless sleeper. He has enough lotion to last him until college, which I'm exchanging some of it tomorrow.
My in-laws came in for the shower, so we went shopping during their visit. After the shower we went to Babies-R-Us and spent a small fortune- mostly on outfits. I think I picked out what will be his homecoming outfit. The next day we went to Target to track down his high chair and we got the Baby Einstein Baby Neptune play mat set. If the baby doesn't like it, the cats surely will. My mother-on-law bought him something very similar to the glow worm dolls we had when I was little. It plays a lot of music.
We picked up his crib set over the weekend. We figured he would destroy his crib between casts and braces, so we bought a cheaper set from Walmart. It got really great reviews- it's the Baby Relax three piece set. We special ordered it in natural because I think cherry wood looks weird. We'll be setting it up sometime this week, which I'm really excited about.
I have to go for my stress test in the morning, which stresses me out! My belly has gone numb, which apparently is common. I read it's because of stretching nerves. I'll double check when I'm there tomorrow, just to be on the safe side.
Tuesday, February 16, 2010
Wake me up in ten minutes
Since I'm waiting for my husband to get out of work, I figured I'd talk about my wonderful doctor's appointment last week.
So I went in for a simple stress test. Little did I know I would be stuck at the hospital for five hours. The little guy didn't cooperate, even after being buzzed sex times(he's a heavy sleeper), so they made me do a battery of tests after wards. I went to ultra sound after waiting like an hour to go, where they assigned him points for each movement he made and if he tried to breathe. He got an 8 out of 8. Then I had to go over to triage, which will cost me a thousand dollars because it's out of network (in the same building), for like a 2 hour stress test! I thought they forgot about me. The bed was horribly uncomfortable and I had to stay in an awkward position, and I was running on little sleep. Turns out he's fine, which I knew the entire time. Even the ultra sound tech said he was sleeping and being stubborn, something I have told the doctor's the entire time. He's the most active in the middle of the night most likely because it's when I relax because I get off work late.
This little guy is going to make us bankrupt before he even gets here.
I have a doctor's appointment tomorrow. We'll see how it goes. I skipped my stress test yesterday because we have a foot of snow and I couldn't really get out of work anyhow. My next stress test is Thurs. I'm refusing going for more testing if he doesn't cooperate.
So I went in for a simple stress test. Little did I know I would be stuck at the hospital for five hours. The little guy didn't cooperate, even after being buzzed sex times(he's a heavy sleeper), so they made me do a battery of tests after wards. I went to ultra sound after waiting like an hour to go, where they assigned him points for each movement he made and if he tried to breathe. He got an 8 out of 8. Then I had to go over to triage, which will cost me a thousand dollars because it's out of network (in the same building), for like a 2 hour stress test! I thought they forgot about me. The bed was horribly uncomfortable and I had to stay in an awkward position, and I was running on little sleep. Turns out he's fine, which I knew the entire time. Even the ultra sound tech said he was sleeping and being stubborn, something I have told the doctor's the entire time. He's the most active in the middle of the night most likely because it's when I relax because I get off work late.
This little guy is going to make us bankrupt before he even gets here.
I have a doctor's appointment tomorrow. We'll see how it goes. I skipped my stress test yesterday because we have a foot of snow and I couldn't really get out of work anyhow. My next stress test is Thurs. I'm refusing going for more testing if he doesn't cooperate.
Monday, February 8, 2010
Many visits!
A good doctor visit today! It was a very busy day. I first turned in my pee...all 24 glorious hours of it. My only guess is they were looking for excess protein. Then I had an ultra sound done. Our little guy is up to 4 pounds and 2 ounces. He's still little, but in the 31st percentile. We got a good look at his profile and he has his dad's face shape and most likely my giant nose. We got a good look at one of his feet and it was only turned in slightly. We didn't get a good look at the other foot enough to tell how bad it is. I'm secretly hoping he doesn't have to do the full onslaught of the Ponseti Method. If he does, that's ok too, but it would be nice to not have to go through all of it.
After our ultra sound, we went to see the doctor. My blood pressure was good today so I'm cleared to function like a semi-normal human being again. Then we went for my stress test, and the little guy didn't cooperate at all. It took forever to get my time in. He was crazy today. I guess it was payback for being poked and prodded during the US.
After our ultra sound, we went to see the doctor. My blood pressure was good today so I'm cleared to function like a semi-normal human being again. Then we went for my stress test, and the little guy didn't cooperate at all. It took forever to get my time in. He was crazy today. I guess it was payback for being poked and prodded during the US.
Friday, February 5, 2010
Ugh
Bad visit at the doctor today. My blood pressure is too high and he took me off work for the weekend. Hopefully it's back down when I got back on Monday, because I've only been home like 3 hours and I'm already stir crazy. I have to keep an eye out for swelling extremities, headache and liver pain. I get to pee in a jug all day Sunday. I almost giggled when they told me I had to keep it in the fridge. Not exactly sure what they need all that pee for...
On Monday I get another ultra sound done to check his growth. Then I get to go back to the doctor and get re-examined. Then after that I have to go get a stress test, my first of the week. Then I get to go back for another on Thurs. I get to have those for the rest of the duration. I guess this means they will probably take him as soon as he's fully "cooked." I've got about four weeks to go until he's in the completely developed stage.
Not exactly sure what I'm going to do if they put me on bed rest. I can still do my two online classes. I'm sure they will still let me waddle to my other two classes that I have once a week each.
On Monday I get another ultra sound done to check his growth. Then I get to go back to the doctor and get re-examined. Then after that I have to go get a stress test, my first of the week. Then I get to go back for another on Thurs. I get to have those for the rest of the duration. I guess this means they will probably take him as soon as he's fully "cooked." I've got about four weeks to go until he's in the completely developed stage.
Not exactly sure what I'm going to do if they put me on bed rest. I can still do my two online classes. I'm sure they will still let me waddle to my other two classes that I have once a week each.
Friday, January 15, 2010
Good News
The doctor’s appointment we had on Thursday went really well. I had gotten a letter the day before from the genetic specialist that had laid out all the things wrong with the pregnancy before I had done the amnio. One of the things listed was that I had an abnormal amount of amniotic fluid. I asked the doc about it and he said it’s not uncommon, and it’s something they just keep an eye on.
He was also the first doctor in the practice that has reassured us. He acknowledged how frightened we must have been and told us not to worry. He said the only thing wrong with our baby is he has a little clubbed foot which is common, and some casts and a boot and he’ll live a normal life. I mentioned something about going to the Shiner’s Hospital, and he said we wouldn’t even have to go that route. He said we’d be spending a lot of time at Children’s Hospital for the first few months. He also referred us to a pediatrician that has experience with kids with clubbed feet.
I actually left the appointment eager to buy baby things. I always dread doing baby shopping because it depressed me, especially since his future was so uncertain for so long. He now has a playpen and travel system, swing, bunches of outfits that accommodate his special feet, a vibrating seat, a few toys, and a giant plush Yoda (his daddy is a nerd). I’ve bought the kid a lot of onsies, because I know that’s something he can wear all the time. I’ve bought a couple of outfits, making sure they had pants and tops, so he can at least wear half of the outfit at a time. I’ve been also looking at things with snaps down the sides. Luckily the little guy will be in braces for the summer, so he can wear onsies or shorts all the time.
We went to get my husband a new pair of shoes today, and I looked at the clearance shoes rack. There were a bunch of super cute, tiny, New Balance sneakers on it. It made me a little sad. I really looked forward to buying the baby bunches of cute little shoes. When we were checking out, I was surprised to see the cashier look at both shoes in the box to make sure they were the same size. I have read that sometimes people who have had clubbed feet wear different sized shoes. Maybe the huge population of people with clubbed feet are scamming Shoe Carnival.
He was also the first doctor in the practice that has reassured us. He acknowledged how frightened we must have been and told us not to worry. He said the only thing wrong with our baby is he has a little clubbed foot which is common, and some casts and a boot and he’ll live a normal life. I mentioned something about going to the Shiner’s Hospital, and he said we wouldn’t even have to go that route. He said we’d be spending a lot of time at Children’s Hospital for the first few months. He also referred us to a pediatrician that has experience with kids with clubbed feet.
I actually left the appointment eager to buy baby things. I always dread doing baby shopping because it depressed me, especially since his future was so uncertain for so long. He now has a playpen and travel system, swing, bunches of outfits that accommodate his special feet, a vibrating seat, a few toys, and a giant plush Yoda (his daddy is a nerd). I’ve bought the kid a lot of onsies, because I know that’s something he can wear all the time. I’ve bought a couple of outfits, making sure they had pants and tops, so he can at least wear half of the outfit at a time. I’ve been also looking at things with snaps down the sides. Luckily the little guy will be in braces for the summer, so he can wear onsies or shorts all the time.
We went to get my husband a new pair of shoes today, and I looked at the clearance shoes rack. There were a bunch of super cute, tiny, New Balance sneakers on it. It made me a little sad. I really looked forward to buying the baby bunches of cute little shoes. When we were checking out, I was surprised to see the cashier look at both shoes in the box to make sure they were the same size. I have read that sometimes people who have had clubbed feet wear different sized shoes. Maybe the huge population of people with clubbed feet are scamming Shoe Carnival.
Monday, January 11, 2010
First Post
I've had the perfect pregnancy- Well except for the bout of morning sickness and the insane urge to devour animals after being vegetarian for ten years. I haven't had to struggle with constant nausea, nor raging hormones, or any of the typical pregnancy complaints. The fetus is a little genius, and has done all the cool fetus stuff when he was supposed to, like kicking, and is absolutely defiant when anyone messes with his territory (he threw a fit during every ultra sound and after the amnio).
The downside of being pregnant is that it is absolutely terrifying. I am 29 weeks pregnant with our first child. Months and months ago, we decided to get this little blood test done to early screen him for horrible chromosome disorders (basically we did it because they did an ultrasound along with the test and we wanted to see him 9 weeks early). One of the tests showed a tiny increased risk, which quickly in “doctor land” made us high risk, for Trisomy 13 and 18. We weren't really concerned because our chances of having a baby with Trisomy was 1 in 147, which the normal cut-off is 150. We fretted over it for a few days, and then quickly forgot about it, until a few months later.
We got out 20 or so week ultra sound done, and our little fetus, much to my dismay, was in fact a boy and not the little princess I swore I was having. We also found out HE was looking great. I went to the doctor a week or so later, and was told again how fantastic he looked. I went back to the doctor the next month and another doctor in the practice seemed very concerned that the baby has what appeared to be a clubbed foot and demanded another ultra sound as quickly as possible because it could mean he has Trisomy. I of course lost it as soon as we made it out of the doctor's office, because at this point I was so sick of the Trisomy stuff and in my pregnant state, an emotional train wreck. So we went on a Saturday less than a week later (and the day after Christmas) to get another ultra sound done, where we saw the clubbed foot and were informed he may have a rocker bottom foot, plus short femurs.
I quickly researched rocker bottom foot when I got home and realized it meant imminent doom for our little guy. There isn't much information online about it, but it all looks very ugly and points to Trisomy. On Monday I called the doctor's office to get a follow up about the ultra sound, and hopefully better news, and was scheduled for the next day. The doctor was pretty much useless to us that day, and said he didn't know anything either way (to give us hope of condemn us), and referred us to a peritoneal (sp) specialist.
We went to the specialist the next day, (this, by the way, made our 4th trip to the same hospital within five days), and it was probably the most awkward conversation my husband and I ever had with another human being. The specialist explained our risk of having a baby with Trisomy was now increased significantly, and she recommended an anmnio. But she also asked us about our feelings and left long pauses after everything she asked. Exactly what do you say to someone who tells you your baby is going to die because they most likely have this horrible condition? She also managed to make my husband mad by explaining to us how chromosomes worked. When she left the room for a second, he said to me, "I learned that in high school." I didn't say to him that I knew exactly how mentally retarded our child would be, ("Not like Down's Syndrome mentally retarded," she said), because of the mass of special education classes I have taken in my bajillion years of college. I reminded him that the majority of people in the world are dumb, and she has to dumb her speech down. We tried to bargain with her for an ounce of hope, and told her how the ultra sound tech said everything besides his legs looked really good. She told us instead, that things would just start going downhill if he had it (awesome).
Nonetheless we decided to do an amnio. About me: I have an unrealistic fear of needles being injected into me. I don't care once they are in, but I get very anxious when I see a needle coming anywhere near me. I have somehow managed to get tattoos and donate blood, all by closing my eyes and not looking at the needle at all. Anyhow, she somehow managed to get us in for a few hours later, so we went home and ate lunch as I prepared myself by being bitter about having a defective baby.
So we came back to the hospital (5th trip in five days. We had started naming the ducks at the lake near the hospital), and had to wait an hour because they were testing some new equipment in the room we were to be in. At least this gave me time to create a small rage in me because we were in a room full of pregnant women who looked like they would sell their babies for drugs first chance they got, and chances are, their babies would be completely normal, despite having parents who would rather get high than care about them (yes, I'm still slightly bitter and stereotyping). We were finally lead back where I got an ultra sound first. The technician confirmed his other foot was clubbed too, which was a mild relief because if it was clubbed instead of rocker bottom, then he could be ok. We were told that he measured small, but only by a few days.
The doctor came in and confirmed clubbed feet, but said she couldn't tell if his feet were rocker bottomed or not. She also asked how tall I was, which I'm assuming is relating to his short femurs. I'm not very tall, nor is my husband, which we had been told previously could be why he has little legs. I then was prepped for the amnio. I closed my eyes and held my husband's hand. They made me state my name and why I was at the office that day, I guess to make sure I wasn't crazy for getting a giant needle stuck into my womb. The needle going in wasn't too bad- I didn't feel it going into my belly, and it cramped for just a second when the needle went through the uterus. It only lasted a minute, and gasped a little when the needle came out because it surprised me and hurt slightly. I later asked my husband if he looked at the needle. He said he didn't look at it in person, but saw needle and the baby "run" from it on the screen. We were told we would know something within to 7-10 days, and the genetic counselor would call us when the results were in.
This quickly became the longest week and a half of our lives. We were in zombie mode for a few days. Our friends and co-workers quickly assumed something was wrong, so we had to tell everyone. I hated the looks I got when anyone who knew saw me. I'm sure I looked awful. It was hard to tell anyone I ran into who didn't know that I was pregnant that I was expecting, because I had no idea if I would have a baby to bring home in the end. My husband I and created our little emotional haven at home, and waited out the week.
Then there was no call on Wednesday, which was one week after the test. Nothing on Thursday. Friday I called them after no call in the morning. I luckily got a call back about an hour later. No Trisomy. I hung up the phone and cried out, enough to convince my husband for a split second that our baby was going to die. I realized that and quickly muttered out that he was okay.
Our chanced of having a baby with Trisomy 13 or 18 was 1 in 147 originally. We never did ask what our chances were after finding out he had clubbed feet, mostly out of fear. I take comfort in numbers and statistics and honestly didn't want to know because I thought it would be out of my safe zone. From what I've read, our chances of having a baby with a clubbed foot is 1 in 1000. We're very lucky. We're lucky I got pregnant after previously trying for a year, and we're lucky to have a baby who other than his feet should be healthy. He's not a 100% out of the dark, and I'm sure next doctor visit we'll get something else to worry about, but for right now he's my little boy who just is going to have some crazy feet for a little while.
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