Recently Ethan and I have been at a Dr a week. If it's not urology it is neuro, if it's not neuro its the ped and so on. This Fri we are going to Ortho to be looked at for AFO's yet again. When we were seen by neuro last week we were told that he is 100% sure E will now need AFO's on at least his right foot if not on both. I dread this appt bc we have done so well for so long and it seems ike such a smack in the face, but I know he needs it and I know that it will be the best thing for him so in the same breath I am all for it. Neuro also told us last week that itt looks like E's spinal cord is tetthering, we will go for our MRI next Thur and if it is we will have surgery to repair it soon. This is eatting at me too..I know these things are expected, and I hate to admit this, but I like to pretend like there is a steel shield around E and that he is protected from all of these things. I guess eventually some things are bound to go wrong. We are also going to follow up with urology yet again to check his right kidney. At our appt last week I was told his left kidney is excellent and so is his bladder and both kidneys are growing great but he now has stage 4 kidney reflux in the right one.
And as for myslef. I went for my sleep study last Thur night, I stopped breathing 19x's which is NOT considered sleep apnea apparently...so now onto the nexr stdy to see why I am always so exhausted and falling asleep at the wheel. : / I went to my cardiologist on Friday and was told i have arrythmia and palpatations...surprise!! Oh well, just something else I have to look after I suppose.
All in all things are still going good. Ethan is talking well now, he is running, climbing, getting in trouble..all the things an almost two yr old should be doing! I will update again soon after his MRI next week, please keep us in your prayers that the teether is A) not there or B) not causing any severe damage to anything
Thank you all!
Thursday, July 21, 2011
Sunday, January 23, 2011
Oh my!
Ethan is becoming more and more active by the day! He is running around everywhere, climbing everything he possibly can, and talking and talking...and talking! There's no mistaking him for a baby anymore (as much as I may want to try at times.) Yesterday I was picking up around the living room, I look back and he had drug his white chair to the recliner and climbed in...then proceeded to watch Sesame Street and eat popcorn puffs lol.
Ethan has began with attitudes. I have been told it is just a stage, a age thing. And that all kids test their moms around this time. It is driving me batty! I tell him no, he screams at me; I pop him, he hits me; I take him to his crib (because its obvious the other two dont work) he bites me. Now tell me why he doesnt do this to ANYONE else? And I am the main one to disapline him. i would think he would listen to me more and not Dad or Nana, but I guess not. I just keep telling myself #1 hes a kid and he WILL learn to listen eventually and #2 this too shall pass lol.
Ethan's peeing has gotten better. It's still not how it should be, but it is better. I am going to go ahead and call the urologist in the morning just to be safe. I know I couldn't live with myself if something happened because I didn't look out for him.I'm thinking a request for urodynamics is what I should be asking for (as suggested by a fellow mama) he has never had one, only renal ultrasounds. So we shall see!
Ethan's peeing has gotten better. It's still not how it should be, but it is better. I am going to go ahead and call the urologist in the morning just to be safe. I know I couldn't live with myself if something happened because I didn't look out for him.I'm thinking a request for urodynamics is what I should be asking for (as suggested by a fellow mama) he has never had one, only renal ultrasounds. So we shall see!
Tuesday, January 18, 2011
To call or not to call
Ethan is having issues with peeing again, it started during the day yesterday and continued on through the night. He is peeing so much that even if I change his diaper every two hours he leaks out. His fluid intake hasn't changed and he is eating the same stuff he usually does. This has happened before, it went on for a few days then magically disappeared. I took him to the urologist the first time this happened and they did another renal ultrasound only to tell me that he still has kidney reflux grade 1 and we'll just keep watching it.
Since clinic I have been thinking a lot about this whole urology thing. I've been asked several times by several Dr's and nurses has he had UTI's and I always say no. To my best knowledge he hasn't. He's never been dx'd with one. But now I'm really wondering...how would i know if he had one? I know a fever is a sign..he's had a ton of those recently, irritability...well that's him most days too. So what else is there? I talked to a lady from SB Clinic today and she suggested that if it continues for a few days to call urology. She also told me UTI symptoms are usually just pain while urinating (which I wouldn't know) fever, and irritability. She also said he may not become irritable from it if he doesn't have feeling there. I know she is right but it shattered my heart. That is one of the many "we don't knows" that I have forced myself to stop thinking about. I am terrified that he doesn't have sensation there, or that this bladder/kidney issue will persist and we will have to start catheing. I know other are in that place, I know it could be 1000x worse. But it is still hard to swollow. I just have to take a deep deep breath and take it one day at a time I suppose.
Since clinic I have been thinking a lot about this whole urology thing. I've been asked several times by several Dr's and nurses has he had UTI's and I always say no. To my best knowledge he hasn't. He's never been dx'd with one. But now I'm really wondering...how would i know if he had one? I know a fever is a sign..he's had a ton of those recently, irritability...well that's him most days too. So what else is there? I talked to a lady from SB Clinic today and she suggested that if it continues for a few days to call urology. She also told me UTI symptoms are usually just pain while urinating (which I wouldn't know) fever, and irritability. She also said he may not become irritable from it if he doesn't have feeling there. I know she is right but it shattered my heart. That is one of the many "we don't knows" that I have forced myself to stop thinking about. I am terrified that he doesn't have sensation there, or that this bladder/kidney issue will persist and we will have to start catheing. I know other are in that place, I know it could be 1000x worse. But it is still hard to swollow. I just have to take a deep deep breath and take it one day at a time I suppose.
Wednesday, January 12, 2011
Climbing!
Let me start by saying that Ethan hasn't been feeling very good the past few days. I think that it is just a cold, but he has been pretty clingy and whiny. I was hoping to take him out to play in the snow yesterday since we missed it on Monday when it first fell, but his nose was just too runny and his cough was too strong. :( Greg and I were both home from work again yesterday and we all just had a nice lazy day.
Around 630 last night I was laying on our bed talking to a co-worker and I saw Ethan walk in the room. He never said anything just walked around so I didn't pay him much attention. Next thing I knew he was on the bed with me pouncing on me!!! That's right- my son who has SB is CLIMBING!! I immediately screamed he's climbing and then repeated it again (you know just in case my husband or co-worker didn't understand my scream lol) I just couldn't believe it! He laughed and played and tackled me for awhile then started saying down. I put him back on the floor and there he went again...to the foot of the bed, climbed onto the laundry basket, then onto the bed. Clapped at himself then said down. We repeated this process until he got tired of doing it! I hate to admit it but my baby is become a little boy.
ST was canceled for today. Ethan's therapist wasn't comfortable driving down our back rds to get here-cant blame her. So hopefully next week we will get released!
Around 630 last night I was laying on our bed talking to a co-worker and I saw Ethan walk in the room. He never said anything just walked around so I didn't pay him much attention. Next thing I knew he was on the bed with me pouncing on me!!! That's right- my son who has SB is CLIMBING!! I immediately screamed he's climbing and then repeated it again (you know just in case my husband or co-worker didn't understand my scream lol) I just couldn't believe it! He laughed and played and tackled me for awhile then started saying down. I put him back on the floor and there he went again...to the foot of the bed, climbed onto the laundry basket, then onto the bed. Clapped at himself then said down. We repeated this process until he got tired of doing it! I hate to admit it but my baby is become a little boy.
ST was canceled for today. Ethan's therapist wasn't comfortable driving down our back rds to get here-cant blame her. So hopefully next week we will get released!
Monday, January 10, 2011
I'm back!
It has been a very long time since I last posted-almost 1yr. So much has happened, so much has changed. Ethan is now 14 months old and running around like a crazy child-that's right I said running! He is so smart that it truly amazes me. He will say things and do things that you wouldn't expect a child his age to do, but that's what makes me so proud to be his momma.
As for all of his medical info, since I last posted we have been to Spina Bifida clinic twice. Had 3 MRI's and 2 CT scans. Amongst those scans they found he does have Arnold Chiari Malformation, they discovered a cyst in his spinal column (the same area they did the myelomeningocele repair) they also saw that he not only has the one cyst in his brain but a lk tctually two. For now we are just watching and waiting. There really isn't much you can do for it except drain them and due to their location Dr. Heneger doesn't want to unless completely necessary. We also discovered Ethan has kidney reflux disease grade 1. For now we are not doing anything for that either, just watching and waiting. At our last clinic (this past Fri) Dr. Levy said once we begin getting UTI's we will begin med's and possibly catheing. At Ethan's 1st clinic (July 2010) I was FINALLY listened to, he would not eat anything. Formula was all i could get in him no matter what we tried. I told the Dr's, I told the other therapists, and I told our Early Intervention coordinator and everyone kept saying give him a little longer. Well there we were at clinic and I was asked how much purees he was eating a day? My answer was simply none. They were all shocked and going crazy. Within a matter of days we had a modified barium study to insure it wasn't because he couldn't eat and then we began Speech therapy for feeding. On our first day of speech Melinda, the therapist, noticed sensory issues and recommended Occupational Therapy. We had Carla come evaluate and sure enough Mr. Ethan has sensory dysfunction intergration (or something of the sort..the whole thing still 1/2 way confuses me!) Fast forward to now, Ethan is eating wonderfully-in fact we can't get him to stop! He is going to be released from Speech therapy hopefully this week, definatly this month! His sensory issues have come a very long way and as of last week he will only be getting OT once a month! We will be going again in July to SB Clinic, for another MRI, and CT scan and for our follow up with the neurosurgeon!
For those that don't know I have been back to work full time at Community Blood Center since March '10. I am no longer a phlebotomist, though I miss it I love my new job as Operations Support. I stay busy ALL THE TIME and it's always something new! Greg is still at TPI for now, hopefully a better opportunity will come along soon.
I promise I am going to actually keep up with my blog this time around, I want to have this to look back at later in life. It's the littlest things that 6 months from now can make you smile!So if you see me slacking, fuss at me! :)
As for all of his medical info, since I last posted we have been to Spina Bifida clinic twice. Had 3 MRI's and 2 CT scans. Amongst those scans they found he does have Arnold Chiari Malformation, they discovered a cyst in his spinal column (the same area they did the myelomeningocele repair) they also saw that he not only has the one cyst in his brain but a lk tctually two. For now we are just watching and waiting. There really isn't much you can do for it except drain them and due to their location Dr. Heneger doesn't want to unless completely necessary. We also discovered Ethan has kidney reflux disease grade 1. For now we are not doing anything for that either, just watching and waiting. At our last clinic (this past Fri) Dr. Levy said once we begin getting UTI's we will begin med's and possibly catheing. At Ethan's 1st clinic (July 2010) I was FINALLY listened to, he would not eat anything. Formula was all i could get in him no matter what we tried. I told the Dr's, I told the other therapists, and I told our Early Intervention coordinator and everyone kept saying give him a little longer. Well there we were at clinic and I was asked how much purees he was eating a day? My answer was simply none. They were all shocked and going crazy. Within a matter of days we had a modified barium study to insure it wasn't because he couldn't eat and then we began Speech therapy for feeding. On our first day of speech Melinda, the therapist, noticed sensory issues and recommended Occupational Therapy. We had Carla come evaluate and sure enough Mr. Ethan has sensory dysfunction intergration (or something of the sort..the whole thing still 1/2 way confuses me!) Fast forward to now, Ethan is eating wonderfully-in fact we can't get him to stop! He is going to be released from Speech therapy hopefully this week, definatly this month! His sensory issues have come a very long way and as of last week he will only be getting OT once a month! We will be going again in July to SB Clinic, for another MRI, and CT scan and for our follow up with the neurosurgeon!
For those that don't know I have been back to work full time at Community Blood Center since March '10. I am no longer a phlebotomist, though I miss it I love my new job as Operations Support. I stay busy ALL THE TIME and it's always something new! Greg is still at TPI for now, hopefully a better opportunity will come along soon.
I promise I am going to actually keep up with my blog this time around, I want to have this to look back at later in life. It's the littlest things that 6 months from now can make you smile!So if you see me slacking, fuss at me! :)
Monday, April 5, 2010
Thursday, March 25, 2010
Monday, February 22, 2010
A week from today.
We're only a week away from Ethan's surgery and my emotions are consuming me. I am keeping myself busy with work and things around the house,yet it still keeps running through my mind.
I am terrified of losing my son.But I try to remind myself of all the people I know that have made it through spinal surgery just fine.It is still just so scary knowing what my son is about to go through.
He had his 4 month check up today.Things went well,he is 19.1lbs 25 3/4in and his head is a "normal" 26cm! The dr was fussing at me about his weight telling me how he is off the charts and is the weight of a 12 month old ect. ect. But when I told her he only eats 6oz every 3-4hrs she was at a loss of what to do. She recommended we start solids so we can limit calorie intake but I insisted we wait until after recovery from surgery and she said she totally agreed that she forgot that was coming up. He also got 4 shots today and the poor baby was very upset. I had to giggle a little when he was crying, got quiet,looked at the nurse and screamed, then he got quite again and puckered out his lip.
I look at Ethan and I am in awe. He is so little yet so strong. He is oblivious to all the trials in this world and is just happy to be alive! He enjoys the littlest simplest of things. I love the moments we share together. Holding him in my arms and him looking up at me smiling.It makes my heart melt! I love him more and more every second.Being a mother is a different kind of love, a love that runs deeper than anything I have ever felt before.Yet it is the most wonderful feeling,and I am so grateful I have been given the opportunity to feel it and share it with him!
I am terrified of losing my son.But I try to remind myself of all the people I know that have made it through spinal surgery just fine.It is still just so scary knowing what my son is about to go through.
He had his 4 month check up today.Things went well,he is 19.1lbs 25 3/4in and his head is a "normal" 26cm! The dr was fussing at me about his weight telling me how he is off the charts and is the weight of a 12 month old ect. ect. But when I told her he only eats 6oz every 3-4hrs she was at a loss of what to do. She recommended we start solids so we can limit calorie intake but I insisted we wait until after recovery from surgery and she said she totally agreed that she forgot that was coming up. He also got 4 shots today and the poor baby was very upset. I had to giggle a little when he was crying, got quiet,looked at the nurse and screamed, then he got quite again and puckered out his lip.
I look at Ethan and I am in awe. He is so little yet so strong. He is oblivious to all the trials in this world and is just happy to be alive! He enjoys the littlest simplest of things. I love the moments we share together. Holding him in my arms and him looking up at me smiling.It makes my heart melt! I love him more and more every second.Being a mother is a different kind of love, a love that runs deeper than anything I have ever felt before.Yet it is the most wonderful feeling,and I am so grateful I have been given the opportunity to feel it and share it with him!
Tuesday, January 26, 2010
Just a few things on my mind.
Not too much is new recently. Ethan has been doing a bit better at night time,he is starting to sleep from 8ish to 2 then 3-530 which is truly a blessing compared to what I was getting of sleep. He hasn't really reached anymore milestones though he is cooing "talking" A LOT more! The boy wont hush lol but its so cute! He is also starting to try to sit up (I think) he will be laying on his back and start to pull up and gets about 1/4 the way then falls back..he will get it in time! I think it's still pretty early for him to be even attempting it!
I am really dreading March 1st. I am terrified of it. There's so many things up in the air for him and it is always so hard not knowing. I know God is in control and his will will be done,but it is a true test of faith. My biggest fear is Ethan dieing. I keep being told that that is not a possibility, but it always is when you have a major surgery,no matter how people try to tell you it isn't. I couldn't imagine my life without my son,he is my world. In the meantime I am just trying to make that worry a distant thought. I am also concerned that this surgery is going to make his feeling/movement/bowel/bladder worse. I don't really know anyone who's little one didn't have surgery right after birth so I'm not sure what the differance may be. Yet another one of those wait and sees.Another concern of mine..that I haven't shared w/ anyone yet bc honestly I'm not sure if I'm right or not is Ethan's bowel movements..I'm not sure if it is bc of the SB or if it is bc of all the rice cereal added to his milk for reflux but he wont go on his own unless I give him juice.He didn't have a prob with it at all until the rice cereal was added then it progressively got worse so I believe that is what is going on but I'm not really sure.
Another thing that has been bothering me recently is how some people react about Ethan's SB and SB in general. I don't want my son to be treated any differently bc he has a "disability" but I also do want it to be recognized, it is NOTHING to be ashamed of. I have been having numerous comments like "good thing nothings wrong with him hunh" or "oh hes fine,I don't know why you take him to so many appts" and I could go on and on with the list but why bother! Another thing that REALLY got to me is a aquantance of mine. Her baby has a sacral demple and they were doing a ultrasound to see what was going on. Her initial reaction was big concerns her child wont walk or will have to have surgery and things of that nature (which I do understand all to well) but it turned out it is just a demple and nothing more! Well others were saying "Thank God" and "What a relief" I know it shouldn't bother me bc if I were in her shoes I know I would feel the same.But being in my shoes I cant help but think...it's not that bad. I dont know if what I am saying is making sense or not, honestly reading it it doesn't to me,but Im not really sure how to express how I feel.Overall I guess I want people to recgonize SB is not a terrible thing and it is a disability but it doesn't define you. I want people to be amazed at what Ethan and others with SB accomplish vs. pretending it is not a big deal. I know we have a long long road ahead of us as we are only 14 weeks into Ethan's joyful life, and we have many many accomplishments to come. I can't wait to see what the future holds for Ethan and our family and I want others to be able to share in that with us too!
I am really dreading March 1st. I am terrified of it. There's so many things up in the air for him and it is always so hard not knowing. I know God is in control and his will will be done,but it is a true test of faith. My biggest fear is Ethan dieing. I keep being told that that is not a possibility, but it always is when you have a major surgery,no matter how people try to tell you it isn't. I couldn't imagine my life without my son,he is my world. In the meantime I am just trying to make that worry a distant thought. I am also concerned that this surgery is going to make his feeling/movement/bowel/bladder worse. I don't really know anyone who's little one didn't have surgery right after birth so I'm not sure what the differance may be. Yet another one of those wait and sees.Another concern of mine..that I haven't shared w/ anyone yet bc honestly I'm not sure if I'm right or not is Ethan's bowel movements..I'm not sure if it is bc of the SB or if it is bc of all the rice cereal added to his milk for reflux but he wont go on his own unless I give him juice.He didn't have a prob with it at all until the rice cereal was added then it progressively got worse so I believe that is what is going on but I'm not really sure.
Another thing that has been bothering me recently is how some people react about Ethan's SB and SB in general. I don't want my son to be treated any differently bc he has a "disability" but I also do want it to be recognized, it is NOTHING to be ashamed of. I have been having numerous comments like "good thing nothings wrong with him hunh" or "oh hes fine,I don't know why you take him to so many appts" and I could go on and on with the list but why bother! Another thing that REALLY got to me is a aquantance of mine. Her baby has a sacral demple and they were doing a ultrasound to see what was going on. Her initial reaction was big concerns her child wont walk or will have to have surgery and things of that nature (which I do understand all to well) but it turned out it is just a demple and nothing more! Well others were saying "Thank God" and "What a relief" I know it shouldn't bother me bc if I were in her shoes I know I would feel the same.But being in my shoes I cant help but think...it's not that bad. I dont know if what I am saying is making sense or not, honestly reading it it doesn't to me,but Im not really sure how to express how I feel.Overall I guess I want people to recgonize SB is not a terrible thing and it is a disability but it doesn't define you. I want people to be amazed at what Ethan and others with SB accomplish vs. pretending it is not a big deal. I know we have a long long road ahead of us as we are only 14 weeks into Ethan's joyful life, and we have many many accomplishments to come. I can't wait to see what the future holds for Ethan and our family and I want others to be able to share in that with us too!
Thursday, January 14, 2010
Awsome giveaway!
If you go down to the bottom right of my pg. you will see a link to the The Journey...it is a awsome sight w/ lots of SB info and there is a give away going on right now!! Spinabifidakids.blogspot.com is the exact link!
Tuesday, January 12, 2010
The holidays and recent appts.
What's this?Ethan's first time being spoon fed!l
Mommy and Ethan
Sorry I haven't posted in awhile. I've had my hands a bit full lately!
Christmas was wonderful! Ethan got so much stuff I couldn't believe it! Who would think people would go all out for a newborn! We ended up going to Greg's Maw Maw Campbell's on Christmas eve,then his Maw Maw Whitaker's, then Dad, Lisa and Lee Lee came over. Christmas morning Greg,Ethan, and myself had our own little event then that afternoon we went to Greg's parents. Needless to say I will NOT be doing all that again. It's so hard to drag a baby,diaper bag,and presents all over town...they can come to us for now on!
New Years was nice, Greg,me,Ethan,and our friends Bryan and Trey hung out at my house and my sister and her friend Lauren came over to eat with us! We took a few pics so Ill add those here too!
Jan. 4th Ethan had his MRI and everything went fine,though I was a nervous wreck the entire day.I got the results on Jan 7th and they weren't exactly what I was expecting. I honestly thought that they were going to say there was nothing in the sac except for fluid. But instead they told me that there are nerves in the sac as well intangled into each other, as well as the membrane that keeps the spinal fluid in the spinal column is ruptured. The surgery is going to be March 1st. Dr. Heneger doesn't think Ethan will lose bowel/bladder nor will he lose leg/feet feeling/movement.BUT it is a risk.He also told us that Ethan will more than likely need repeat surgeries throughout the span of his life to keep correcting the nerves bc they will continue to grow back and get caught in the scare tissue. If the nerves go uncorrected then Ethan will ultimately lose the feeling/movement/bowel/bladder anyway.So the best option is to try to correct it.I was also told at this appt that Ethan has a cyst on his brain.I was told not to worry about it that they will just keep a eye on it and that was it. I am concerned about it but I am not going to research it bc all it will do is lead to more worries.
I almost forgot to add that I have been spoon feeding Ethan 1x a day and he loves it! And he makes some of the funniest faces sometimes! But overall he loves it!
Anyways, that is the past few weeks in a nut shell! I promise I will start updating more often!!
Wednesday, December 16, 2009
Saturday, December 12, 2009
Ethan is rolling over!
Im about a week late on this but Ethan started rolling over last sunday! He loves it! Everytime he rolls he smiles..its just too darn cute! He is starting to sleep better through the night,but were still not a full night sleeper yet.
Thursday we went to the eye dr to make sure the cpap and oxygen didnt harm his eyes,and after a very tramatic experience we found out it didnt! We will go back when Ethan turns 6 months just to double check.
Other than that I dont really have anything to report.I am extremely tired and I start back to work this coming Fri. :( Oh Ethan has physical Therapy on mon,so Ill update then!
Thursday we went to the eye dr to make sure the cpap and oxygen didnt harm his eyes,and after a very tramatic experience we found out it didnt! We will go back when Ethan turns 6 months just to double check.
Other than that I dont really have anything to report.I am extremely tired and I start back to work this coming Fri. :( Oh Ethan has physical Therapy on mon,so Ill update then!
Saturday, December 5, 2009
Reflux
Thursday Ethan's ped called me to see how he was doing with his reflux medications. I told them he was still throwing up way too much and as of that morning he could not hold down a bottle at all. Of course they had me bring him in right away. When we get there they listened to his tummy and chest for a good while then they measured his head and looked at me and said "you need to go to the hospital right now" they werent sure what was going on with him. The Dr at this point said it was either going to be because of ACM II or a muscle in his tummy. She called our neuro to see if he thought it was ACM II and he said he didnt think that the head growth was too alarming and he didnt think the vomiting was being caused by it either. (his head circ. grew 1cm in 4days) The neuro said we would just push his appt for the mri forward so we can get a better idea of things sooner (I have yet to hear when it is going to be now,it was going to be 01-04) So we were off to the hospital. I was terrified bc the dr (ped) told me that if it was the muscle in his tummy or it was ACM II they would do surgery right away. I got ahold of Greg and him and my mother in law met me and Ethan at the hospital. I must add this little part..though it is not as important as the story itself..it goes to show why I HATE Gaston Memorial hospital and why I drive 1 hr 15min to Presbyterian! The dr had called Gaston and set up x-rays,ultrasounds,and for this tube thing to be placed down his throat. I was told "go in the birthing center and the receptionist will tell you where to go if you just tell them Ethans there for radiology" Ok easy enough right...WRONG! I walk in and immediatly get screamed at by this old man who "No one under 18,get him out of here" I screamed back "hes the patient" like seriously you couldnt have politetly asked if hes the patient? So I just walked past the guy and kept going! I get to reception, tell them he has a appt in radiology. They send me to the 3rd floor (btw the birth place is seperate from the actual hospital though they are conected by a breezeway) so I got to the 3rd floor and ask the guy at the desk if he can point me to radiology.He sasys "you cant have that baby here, no one under 18 is allowed" I respond "I know sir,hes the patient" the guy then tells me to go to the main building and go to the 2nd floor and down the hall on the left" I thank him and go where he told me.Now Im in the er. AARGGHH! So I ask someone in there how I get to radiology and they say go to the 1st floor and down the hall on the left. So thats where I go next (let me make sure you know here the dr is telling me how urgent this is and Im freaking out) I finally get in radiology and they scream at me because Ethan wasnt admited at the reception desk in the birth place. I explain exactly what happened. And the lady sighed and said hold on and she made a phone call. She tells the person on the phone "this lady claims she wasnt told she and to be admited what do I make her do" She then puts the phone down and says to be "go get him admited" I got pissed and said "what the hell is wrong with everyone in this damn hospital.My dr said its urgent for him to get this done and no one gives a shit your all just throwing me around" she looks at me and says "go to admitting" AAARRRGGGHHH!!!!!! So i go to admitting, I was there 45min no lie! Then I finally get back to radiology and they took us straight back bc "its urgent" ASSES!!! why was it not so urgent till now? So everything was done..I had to hold Ethan down while they did it which was horrible. Then we were sent to the waiting area for the results. Found out it is just severe reflux! They had called my ped to let her know and she wanted to talk to me on the phone, she told me to give him the same amount of meds for the reflux and to add 1 1/4tsp of rice cereal to every 1oz of formula.
Ethans vomiting has finally gotten better, hes still doing it some but not nearly as bad. Yesterday turned into a ruff day with him, he refused to sleep more than 15min at a time. And it only got worse with him not sleeping, not taking a bottle,crying, and screaming as the day went on. Last night Greg watched him for awhile so I could lay down, and Ethan screamed like he was being killed for 3hrs straight. There was no break in it, no matter what Greg did it didnt work.I finally gave up on trying to get some sleep and came back to the living room to help Greg. Then around 930ish Greg said "lets try a regular bottle without rice" So we did, and he ate the whole thing in 3mins. I went and inspected the other bottles we had been trying to give him..its very hard for the milk to come out bc of how thick it is. I think that was the whole prob all day...now I feel like crap bc I know how hungry he had to have been to have gotten that upset for that long.
I am going today to find cereal nipples..I know they exist somewhere bc I remember seeing them. I am already using high flow 6month nipples but they still arent good enough obviously. I also am having my mother and father in law watch Ethan for awhile today so I can sleep! I havent gotten actual sleep in a long time..I always get 1-3hrs here and there but I am give out physically and mentally. I am to the point I dont want to stand up bc I feel weak and my body aches.
Well gotta go tend to a screaming baby! Ill update again when i have a chance/
Ethans vomiting has finally gotten better, hes still doing it some but not nearly as bad. Yesterday turned into a ruff day with him, he refused to sleep more than 15min at a time. And it only got worse with him not sleeping, not taking a bottle,crying, and screaming as the day went on. Last night Greg watched him for awhile so I could lay down, and Ethan screamed like he was being killed for 3hrs straight. There was no break in it, no matter what Greg did it didnt work.I finally gave up on trying to get some sleep and came back to the living room to help Greg. Then around 930ish Greg said "lets try a regular bottle without rice" So we did, and he ate the whole thing in 3mins. I went and inspected the other bottles we had been trying to give him..its very hard for the milk to come out bc of how thick it is. I think that was the whole prob all day...now I feel like crap bc I know how hungry he had to have been to have gotten that upset for that long.
I am going today to find cereal nipples..I know they exist somewhere bc I remember seeing them. I am already using high flow 6month nipples but they still arent good enough obviously. I also am having my mother and father in law watch Ethan for awhile today so I can sleep! I havent gotten actual sleep in a long time..I always get 1-3hrs here and there but I am give out physically and mentally. I am to the point I dont want to stand up bc I feel weak and my body aches.
Well gotta go tend to a screaming baby! Ill update again when i have a chance/
Wednesday, December 2, 2009
Tuesday, December 1, 2009
The past few days.
I feel like it never ends! We have been so busy it seems. We had a wonderful Thanksgiving. Ethan slept just about all day long :) the 3 of us went to my dads and then my mother in laws and ate (Ethan slept in the car seat and only woke up 1 time lol) Greg and I got stuffed full of good food and the best part is I didn't have to cook! I made my Grandmom's broccoli casserole and thats it..Lisa and Karen made everything else.
Friday..the day went pretty well, I got up at 3am to go shopping on the dreadful black friday with my sis and got some great deals! For $113 I got: 6 pairs of pants, 8 shirts, 6 dvds, 1 video game, 3 toys, 1 mixer,and 1 chopper machine! After shopping I came home and took a nap then got up with Ethan so Greg could go out for awhile...thats when the fun began. Ethan decided to have a meltdown that I thought would never end. He screamed like I have never heard before and wouldn't stop. Nothing worked.I changed him,tried to feed him,gave him a paci,put him in the swing,rocked him,walked with him,layed him down,just held him..ect. After over 2hrs of nonstop screaming and crying and his alarm going off 18x's I took him down to dads. Amanda tried to calm him and couldn't get him calm either.I called the Dr to see what she thought and she had me check his back and other things and she was at a loss too. She told me if it didnt stop soon to take him to the er to have him checked.At this point dad and Lisa got home and Lisa held him,and guess what? The little butt took a bottle for her,got quiet and went to sleep. Wouldnt ya know. The dr called back to check on him and told me to bring him into the office first thing sat morning.
Sat, we go to the dr office only to find out the poor little guy has acid reflux and thats what was causing the prob the night before. They put him on meds for it ($40 meds OUCH!!) and told me to bring him back on mon so they can make sure its working ok.They also said that he has a yeast infection from the thrush. They said it can travel through his urine and cause it, so I got this cream stuff I have to put on him till it is gone (which it almost is.) After the dr office I took Ethan with me to walmart to fill his prescriptions and while there Ethan took his first ever pic with Santa!! It was so funny. Ethan had just woke up,I handed him to Santa and they clicked the pic then Ethan screamed..at least the camera guy was quick! Later Sat afternoon I went Christmas shopping with dad and Lisa and got lots of good stuff for Ethan!
Sun we stayed at home all day and had a nice lazy day!
Mon, we went back to the dr and he said that Ethan seems to be doing very well on the reflux meds so he will keep him on the one they just prescribed. (Good thing bc i cant afford to buy more right now at that price!) The dr also told me that he will be on this reflux meds until he is 1yr old.
Today I took Ethan to get pics made and they were precious but EXPENSIVE!!! I had a coupon for $10 for one pose and just a few pics of it..so I bought that..otherwise the cheapest package is $100.WOW who woulda thought. I will get my pics in 2 weeks so Ill post it then..I may buy the rest of them in a week or two..Im not sure if i can afford to though. I also had to go for my 6 week post partum appt. today. I have healed very well. They did a ultrasound on my back to look at the nerves and said that severe nerve damage was done when they did the spinal ( I coulda told ya that with all the pain Ive been having since.and as much digging and resticking as they did) they told me I could go to the anestesiologist and have him refer me to a neurosurgeon to talk about surgery or I could just take meds to tolerate pain..I chose meds!! I dont have time to have a surgery and recover..nor do I want to. Im still amazed that they can see nerves with a us..I didnt think they could.But I do remember them doing a us on my leg a few yrs back to see my veins and such so I guess they can see that too?
Well, it is 1am and Ethan is finally asleep, so I am gonna try to catch a hr or so before he wakes back up! Wish me luck!!!
Tuesday, November 24, 2009
Neuro Appt
Well, we just got home from the neuro appt and they didn't do anything but glance at Ethans back and measure his head. They said he is still to small and his breathing is too labored for them to sedate him to do the mri so we are going back for the mri in 5 weeks (the week after Christmas :( ) and then the week after that we will go back again to hear the results and schedule the surgery. They said we will probably do surgery in a few months and when we do do the surgery he will have to be in the nicu again for 3-5days for recovery. I was fine the whole time till they said he would be there 3-5. I was told at first it would be out-patient, it breaks my heart to know my precious baby is going to have to go back in the hospital to stay without me. I asked if there was a way he could be in a room where I could stay with him and apparently that is not a option..but I am not going to think about it anymore till closer to time. No need in me getting all torn apart now over something that isnt going to happen for a few months.
When we first got there the PA asked if we wanted to do the surgery next week or the week after that and I almost lost it. No one mentioned doing it that soon before. But when I asked if his breathing was a problem she went and got the surgeon and thats when they decided the plan we now have in place.
Thank you all for the support and prayers! Looks like Im going to be a nervous wreck once again in a few weeks...Ill try to be strong though and just give it all to God! I know he wont steer us wrong!
When we first got there the PA asked if we wanted to do the surgery next week or the week after that and I almost lost it. No one mentioned doing it that soon before. But when I asked if his breathing was a problem she went and got the surgeon and thats when they decided the plan we now have in place.
Thank you all for the support and prayers! Looks like Im going to be a nervous wreck once again in a few weeks...Ill try to be strong though and just give it all to God! I know he wont steer us wrong!
Friday, November 20, 2009
Long day! Lots of updates!
So to start the morning off Ethan and I got ready and went to pay a bill. While at the bill place a lady looks at us and says "Oh whats wrong with him?" Well...normally I would say it's just a monitor to make sure he's ok. But I don't know what it was that pissed me off about her, I think it was just the way she asked but my response was "nothings wrong with him.whats wrong with you?" She looked at me funny then walked away.
We then went to the ped appt and Ethan was everything but thrilled about it. He is now 9lbs 3oz and 23in long! They said he is growing excellent! He now has trush so he is on meds for it and it will take a few weeks to clear up. I cant believe this poor baby is sick with yet again something else. It seems like everytime I turn around the poor kid has something going on. According to my dad thats just how it is when you have a baby (that doesnt make me feel any better though.) Otherwise they said what they thought was a viral infection in his eye from the cold..isnt a viral infection at all. It is a clogged tear duct. They showed me how to massage it and they said if its still a problem at 9 months he'll be sent to a eye dr. Then if it's a prob at 12months he will have surgery to unclog it, though the dr said she is certain it will clear itself up soon. The dr also looked at Ethan's legs and said she isn't sure why the nicu said he has low tone in them, she said he is excellent. I asked about the monitor and the dr told me that we will take him off of it at his next appt which is dec 21st. She said she wanted him to be on it for the full 2 months just to be sure that everything was perfect then we are done WHOOO HOOO!!!! I HATE that monitor. I love the purpose it serves and I am sure that once it's gone I'll worry to death, but as of right now I hate it :) Im pretty sure that is everything at the peds office. If I think of something else Ill add it later.
Now onto walmart.....AAARRRRGGGHHH!!!!! I went to walmart to fill the prescription. I dropped it off and explained that I dont have Ethans ins card yet but I gave them my husbands. They said " Oh thats no problem at all, itll be ready in 30min" I walk off and start to wonder through the store with Ethan in the stroller. Well lady #1 walks up to me and says "oh he's so little, I cant believe your taking him out already" I responded "he had a dr appt and a prescription to be filled thats why were out" she said "oh" and walked off. At this point I was already a little aggravated but brushed it off.On we went to the christmas stuff and Ethan decides hes gonna have a melt down. He began screaming so I was trying to get him out to hold him but I couldnt get him out quick enough so he got super mad and loud and his alarm went off. At this point everyone in this area was staring at me giving me dirty looks but I STILL brushed it of and just calmed him down.Once he was calm I walked over to the pharmacy to see if the meds were ready ( i gave it 45min) and they said to give them 10 more min. So I walked to the books and then walked back. At this point a hr has passed since I dropped off the script and they told me it would only be 30 min. I asked the lady at the counter if it was ready and she said "oh theres a problem with the insurance go to the drop off window and theyll help you" UGH!!! Ok so I go to drop off and they ask me for Ethans card, I explain again that I dont have Ethans card yet that i told them that earlier and they said it would be no problem. So I had to show them Greg's card again and they called the ins company...Ins said Ethan isnt on the policy!!!!! I have had him added 4x's now..youve got to be kidding me. So the lady at the counter was trying to talk to me and the ins company was on the phone and Ethan decides he wants to scream again...setting off the monitor yet again..and the lady in line behind me says "My God, whats wrong with him" I had had enough! I turned around (baby still screaming monitor still alarming" And responded "Theres not a damn thing wrong with him what the hell is wrong with you..I suggest you mind your own damn business and get the hell out of my way" apparently I embarrassed her bc she walked away quickly.I then calmed Ethan and resumed trying to figure out the ins thing. It ended up that I had to just pay for the meds out of pocket and if I can prove he is added to ins I can get a refund. I have called ins who told me gregs hr dept has to call them so I called her and she got mad ans said she has but she will call again and then call me back. I still haven't herd anything..so once I finish this post I am going to call them back again and see whats going on..Ops gregs hr just called!! She said he is added and everything is taken care of, that if I go back to the pharmacy they said they will refund me.So I guess Ill be doing that here soon.
Then I got home at 145 and i had a at home appt with the early intervention nurse at 2. The appt went very well!! Ethan was very upset (I think he had just had enough for the day too) but Kathy (our nurse) said Ethan has empressed her very much.She said he is scoring between 1-3months on all of his evaluations (hes 1 month old today!) and she said his weight baring and legs movement is amazing.She is concerned a little with the way his left foot is still turned in and that he doesnt seem to have as much strength in his ankles as he does in the rest of his legs so we are going to have physical therapy come out sometime before christmas (i thought they were coming today but she said that the lady that is assigned to us went on vacation and wont be back till the 2nd week in dec) anyways we set 6 goals for Ethan to achieve in the next 5 months and Im sure my big boy will meet them all!!
Well I think thats about it..Im going to eat something real quick then go get my refund!
We then went to the ped appt and Ethan was everything but thrilled about it. He is now 9lbs 3oz and 23in long! They said he is growing excellent! He now has trush so he is on meds for it and it will take a few weeks to clear up. I cant believe this poor baby is sick with yet again something else. It seems like everytime I turn around the poor kid has something going on. According to my dad thats just how it is when you have a baby (that doesnt make me feel any better though.) Otherwise they said what they thought was a viral infection in his eye from the cold..isnt a viral infection at all. It is a clogged tear duct. They showed me how to massage it and they said if its still a problem at 9 months he'll be sent to a eye dr. Then if it's a prob at 12months he will have surgery to unclog it, though the dr said she is certain it will clear itself up soon. The dr also looked at Ethan's legs and said she isn't sure why the nicu said he has low tone in them, she said he is excellent. I asked about the monitor and the dr told me that we will take him off of it at his next appt which is dec 21st. She said she wanted him to be on it for the full 2 months just to be sure that everything was perfect then we are done WHOOO HOOO!!!! I HATE that monitor. I love the purpose it serves and I am sure that once it's gone I'll worry to death, but as of right now I hate it :) Im pretty sure that is everything at the peds office. If I think of something else Ill add it later.
Now onto walmart.....AAARRRRGGGHHH!!!!! I went to walmart to fill the prescription. I dropped it off and explained that I dont have Ethans ins card yet but I gave them my husbands. They said " Oh thats no problem at all, itll be ready in 30min" I walk off and start to wonder through the store with Ethan in the stroller. Well lady #1 walks up to me and says "oh he's so little, I cant believe your taking him out already" I responded "he had a dr appt and a prescription to be filled thats why were out" she said "oh" and walked off. At this point I was already a little aggravated but brushed it off.On we went to the christmas stuff and Ethan decides hes gonna have a melt down. He began screaming so I was trying to get him out to hold him but I couldnt get him out quick enough so he got super mad and loud and his alarm went off. At this point everyone in this area was staring at me giving me dirty looks but I STILL brushed it of and just calmed him down.Once he was calm I walked over to the pharmacy to see if the meds were ready ( i gave it 45min) and they said to give them 10 more min. So I walked to the books and then walked back. At this point a hr has passed since I dropped off the script and they told me it would only be 30 min. I asked the lady at the counter if it was ready and she said "oh theres a problem with the insurance go to the drop off window and theyll help you" UGH!!! Ok so I go to drop off and they ask me for Ethans card, I explain again that I dont have Ethans card yet that i told them that earlier and they said it would be no problem. So I had to show them Greg's card again and they called the ins company...Ins said Ethan isnt on the policy!!!!! I have had him added 4x's now..youve got to be kidding me. So the lady at the counter was trying to talk to me and the ins company was on the phone and Ethan decides he wants to scream again...setting off the monitor yet again..and the lady in line behind me says "My God, whats wrong with him" I had had enough! I turned around (baby still screaming monitor still alarming" And responded "Theres not a damn thing wrong with him what the hell is wrong with you..I suggest you mind your own damn business and get the hell out of my way" apparently I embarrassed her bc she walked away quickly.I then calmed Ethan and resumed trying to figure out the ins thing. It ended up that I had to just pay for the meds out of pocket and if I can prove he is added to ins I can get a refund. I have called ins who told me gregs hr dept has to call them so I called her and she got mad ans said she has but she will call again and then call me back. I still haven't herd anything..so once I finish this post I am going to call them back again and see whats going on..Ops gregs hr just called!! She said he is added and everything is taken care of, that if I go back to the pharmacy they said they will refund me.So I guess Ill be doing that here soon.
Then I got home at 145 and i had a at home appt with the early intervention nurse at 2. The appt went very well!! Ethan was very upset (I think he had just had enough for the day too) but Kathy (our nurse) said Ethan has empressed her very much.She said he is scoring between 1-3months on all of his evaluations (hes 1 month old today!) and she said his weight baring and legs movement is amazing.She is concerned a little with the way his left foot is still turned in and that he doesnt seem to have as much strength in his ankles as he does in the rest of his legs so we are going to have physical therapy come out sometime before christmas (i thought they were coming today but she said that the lady that is assigned to us went on vacation and wont be back till the 2nd week in dec) anyways we set 6 goals for Ethan to achieve in the next 5 months and Im sure my big boy will meet them all!!
Well I think thats about it..Im going to eat something real quick then go get my refund!
Monday, November 16, 2009
Yay Formula!
I gave up on breast milk, I have been having trouble getting enough milk out when pumping and Ive been having to substitute with formula..but last night I was done with it completely! I've been debating on weather or not to go completely onto formula but Greg kept telling me to hang in there itll get better. Well it only got worse. I ended up getting mastisis (which HURTS) and it freaked me out bc I was getting blood with the milk when I pumped. As I said before Ethan has been sick and he has also been very gasy and fussy. After switching to the formula completely for only one day he is 100x's better! Greg and i both agreed it is for the best. Im a little disappointed bc I know how good breast milk is supposed to be for the baby and bc it is free...but if it's only gonna make him sick and I cant produce enough..its so not worth it.
So today me and Ethan were home alone and I had to go potty. I put Ethan in his swing and went to the bathroom. When I came back he had bent himself over and put his head on the tray to go to sleep! Thats my baby lol! I took a pic that Ill attach! Greg said it makes me look like a horrible parent like its hurting him or something..but I sat him up and he went back in the same position and laughed then went to sleep again! Apparently he liked it that way!
Well Im not gonna say too much tonight. Ethan is starting to get fussy so I think hes ready to eat..and Im very tired so I will feed him then go to bed!! Ill be back fri with a update from the ped!
So today me and Ethan were home alone and I had to go potty. I put Ethan in his swing and went to the bathroom. When I came back he had bent himself over and put his head on the tray to go to sleep! Thats my baby lol! I took a pic that Ill attach! Greg said it makes me look like a horrible parent like its hurting him or something..but I sat him up and he went back in the same position and laughed then went to sleep again! Apparently he liked it that way!
Well Im not gonna say too much tonight. Ethan is starting to get fussy so I think hes ready to eat..and Im very tired so I will feed him then go to bed!! Ill be back fri with a update from the ped!
Thursday, November 12, 2009
Wanted to share!
I've shared a few songs with my friends and family on facebook and a few others..but for some reason it keeps running through my mind that I haven't shared them enough yet? Can't really explain the feeling, but it's there so i will share some more! And this way I will have them saved here so one day Ethan can look back and hear them! I hope i do this right..Im kinda new at the whole embedding video thing!
The first song is He's my son by Mark Shultz. This song is so perfect and amazing. It brings me tears everytime I hear it sometimes happy tears and sometimes sad. Either way this song touches my really deeply.
The next song is one that I heard the day i found out about Ethan's diagnosis of Spina Bifida. Since hearing this song that day I have sang this song to him daily and he seems to really like it! I think this song also fits so perfectly! Apparently I can only give the link on this one b/c the embedding was disabled but it's You're Gonna Be by Reba
http://www.youtube.com/watch?v=_JwVf0AV8sg
This song isn't so much a song to Ethan but more so a song that really describes how I felt while going through pregnancy with Ethan and his stay in the NICU. It is also a song of encouragment and a reminder that God is always with me. A dear friend of mine Monica told me of this song when I was struggling with having Ethan in the NICU! This song is If You Want Me To by Ginny Owens
This blog is a place for us to share about our family...in our family is a angel baby named Alex, we have a song for Alex and I feel strongly that I need to place it here as well.The song is Who You'd Be Today by Kenny Chesney
The first song is He's my son by Mark Shultz. This song is so perfect and amazing. It brings me tears everytime I hear it sometimes happy tears and sometimes sad. Either way this song touches my really deeply.
The next song is one that I heard the day i found out about Ethan's diagnosis of Spina Bifida. Since hearing this song that day I have sang this song to him daily and he seems to really like it! I think this song also fits so perfectly! Apparently I can only give the link on this one b/c the embedding was disabled but it's You're Gonna Be by Reba
http://www.youtube.com/watch?v=_JwVf0AV8sg
This song isn't so much a song to Ethan but more so a song that really describes how I felt while going through pregnancy with Ethan and his stay in the NICU. It is also a song of encouragment and a reminder that God is always with me. A dear friend of mine Monica told me of this song when I was struggling with having Ethan in the NICU! This song is If You Want Me To by Ginny Owens
This blog is a place for us to share about our family...in our family is a angel baby named Alex, we have a song for Alex and I feel strongly that I need to place it here as well.The song is Who You'd Be Today by Kenny Chesney
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