Emma's Endoscopy

We checked into admitting at 9 a.m. Em's last bottle was at 7 a.m. They had a room ready but no crib so we waited around until 10 a.m. and finally got a crib. So we went upstairs to the 4th floor. They got her vitals. Her weight , 13 lbs. 2 oz. So 10 oz loss total in about a week. My husband showed up then. Emma was still a pretty happy. Then we went to the treatment room to put an i.v. in. My husband stayed behind and I went. Emma started screaming as soon as we were in there. Poor girl knows by now what was coming. I told them not to even bother with her hands and to go for the left foot. So they did and sure enough first try got it in. She was upset for quite awhile but Daddy calmed her down and had her asleep on his chest in no time.

The procedure was scheduled for 11 but the doctor was late (she normally is but she's worth it). There was some issues with the peds room being used by another doctor who wasn't scheduled to use it so we headed up to the 6th floor which is an adult floor and not quite equipped for children, let alone infants. My husband and I were able to walk her up to the room. There were 2 adult nurses, 2 peds nurses, 2 G.I. doctors (ours and an adult one) and an anesthesiologist (just in case). My doctor apparently doesn't normally do scopes on children sedated or put under general under 1. I told her Emma would fight so they gave her a half dose of Verced. By the sound of it from the hall it didn't do much. They had me helping get on her nasal canula for oxygen (nurse had to run to the nicu for one small enough for her!). One of the doctors at one point asked if I was in the medical field. I laughed and said, before kids I was! So they kicked us out for the procedure. It lasted about 10 minutes. We came back in held her, calmed her down. They gave us a print out of a picture of the inside of her stomach. Nothing to excited.

Now for the results. She said the lining of the esophagus was more irritated and red than she thought it would be or should be. Emma is on max dose of prevacid, on zantac, carafate and mylanta. Irritation should not be present or very minimal. So we have to wait 42-72 hours on that to see if it is an allergy issue. I'll update again when we know. If it is than she'll switch to neocate. If it's not I'm not sure where we go from there. She DID however agree to Emma needing a g-tube. They wanted to place it today but she doesn't place them and the person who does is on vacation. So she'll be scheduled for one to be placed in a week or so when the person is back. Unfortunately, it will be at Bellflower where she was last at and we're not thrilled with their peds unit. Oh well, supposedly it's only a 48 hour stay or so.

So, we are thankful that we are all on the same page now. Hopefully, she'll start gaining weight, feeling better, sleeping better, and then I can sleep better as well. I just hope we can get this reflux under control because I know she is in so much pain. So for now, I guess it's a matter of "this too shall pass"

from today's events. Most were from before. One was in the elevator on the way to, and a few after. Not necessarily in that order. Pics of Today

She sits!!!

Well, at 8 1/2 months Emma finally sat "tri-podding" herself this morning for more than just a few seconds. YAY! She is getting so big and was just SO proud of herself. I think she'll be a whole lot happier once she is able to move. Hopefully this will let me post some pictures...

Emma's scope is finally scheduled!

Well Emma's admission to the hospital has FINALLY been put on the Calendar for monday the 30th. We have to be there at 9 a.m. She has to be NPO (no food) after 7 a.m. and she'll be having the scope done at 11 or 11:30 She said we did not have to take her off meds for this procedure. She also said she will not be going under general anestesia (as she has a past of ongoing apnea and bradycardia). My understanding is it is normally done under General anesthesia. I'm somewhat concerned about her having it not being totally under but also relieved as well.

Anyways, I discussed the possibility of a g-tube (feeding tube) with her and she mentioned that there would still be the risk of aspiration if we did a continuous feed overnight, and that if her reflux is "that bad" and nothing shows from the biopsy, like allergies or anything that she may go ahead and proceed with the nissen fundo/pyloriplasty surgery. Of course she would consult with us first. I'm not quite on board with the fundo but I know i'm tired of my baby being miserable and not being able to sleep for more than an hour or two TOPS at a time at night and getting most of her nutrition at night. I would rather "test drive" so to speak a g-tube and see if that helps some of the problem before jumping to the fundo. Any insight or ideas (if you've been through this or know of anyone) would be greatly appreciated.

A side note on me. I had the 3d catscan done. It was kinda cool. The guy doing it showed me the images and I could see the TOTAL blockage of my frontal sinuses. It was interesting and actually kinda scary. Anyways, that's out of the way so hopefully I'll here from the doctor within a week or so and get my surgery on the schedule. Pray it's not TOO close to the holidays. I'd like to enjoy them without being in pain or hindering anybody elses joy!

Here is a picture from last weekend at the beach. I haven't been posting many pictures lately since blogger has been acting up and not letting me!

Head and Neck Surgeon

Well, I had my headand neck surgeon appointment today. I went in fully expecting to hear take these super duper pills and come back. umm. Wrong!

I walk in there's a dentist type chair all kinds of probes, metal things, oxygen etc. My blood pressure was higher than it's ever been along with my znxiety level. He walks in gloves up and say I need to look into your sinuses. So he uses this "numbing spray" has me suck up through my nose and swallow. Nothing really felt different. I asked if this was normal. He said yeah sometimes. So he proceeds to pull down this light on his forhead and pull out the big long black scope. My heart was racing. He startes putting it up through mt left nostril first. I sorta grimmaced in pain, part discomfort and part pain. He keeps going until it reached what felt like right between my eyes. And he sorta tried to push buut no go. He pull back, up through the right nostril and a little her this timme and stuck. No go. He then wants to look at my voicebox. Tells me to swallow and breathe. Yep, not happening. Darn gag reflex. He got it though I guess. He pulls it out and snaps his gloves on. Sit on the stool and says "well".

I knew from the tone of his voice it wasn't good. He said "well the mri scan is not good enough for the surgery that need to be done. I'm sending you for a specialize CT scan which will take 3d pictures of the nasal cavities which will help the nuerosurgeon and I best plan out the surgery." So, me being in denial, shock or still uncomfortable (oh the numbinf medicine started working about then, go figure.)He then goes on to tell me that it's a risky surgery and that the complete frontal blockage especially a-symptamic is rare. GREAT. RARE. 2 words you really don't want to hear. He then goes on to tell my my nasal passages are unusually small, and being that the area arounf your nose is typically very thin that there is the added risk of poking through the cavity and into the cranial matter (brain). He said if this happen or looks like it might we will need to cut along your hairline peel back the skin and tissue and go directly through the front of your face.

Ok, so still not hearing that this surgery is going to happy I ask "So, what are the chance that I will need this surgery?" He said oh you DO need, you're going to have which is why I'm explaining everything and letting you know why we're doing the specialized CT scan. I think my jaw hit the floor. My friend from out of state was with me and she looked pale like a ghost. Anyways, They need specialized instruments a nueorosurgeon and the ENT Surgeon for the surgery as well as wanting the specialized CT scan available during surgery to help guide their placment etc. YIKES. So he said it will happen in December. No concrete date yet though. I then went on to ask if the surgery was really necessary if i didn't want it. He explained that it was a "disease of the frontal lobes" and that it was spreading and needing to be done. I was too shocked to asl WHAT disease so I need to call back so I can research it to death.

The good new is if the surgery goes off without a hitch I go home the SAME day. Obviously not if it doesn't. Bad news, is he says recovery can take up to 2-3 weeks and we should have childcare for the children and I should basically stay mild. He said afterwards I should not drive for at least 2 weeks and that my balance my be a bit off during that time. ::sigh::

Will this year ever end? It's one thing after another. I'll write more about it when i know more concreate dates as well as when I have time to process it a bit. Oh and I will try to have him take pictures! Why? Because, I'm weird like that!

Emma's G.I. appointment.

Well, we saw her g.i this morning. She could tell how tired I was. She said her main issues with doing a fundo are even if they tighten the esophagus she has delayed gastric emptying. So that would cause an array of problems and would't solve thing. So they would have to do the pyloric as well, which of course has it's own set of complications. If we have to go that route we will, but for now we're continued with the wait and see. she is 5 months adjusted age, 8 months real age. So she wants to keep on keeping on. I expressed that really I'm not sure how much longer we can do that and at this point want to procede with testing to rule out different things of course while waiting for the surgery, IF she even needs it. I also told her I wanted to try the hs blocker with the ppi. So she is setting up Emma to be admitted in the hospital. Either thursday morning to friday afternoon, or monday morning to tuesday afternoon depending on schedulng. She will have a scope with the biopsy, as well as as gastric emptying study. That is the plan anyways. So we're going on hospitalization #4. ::sigh:: I just wanted SOMETHING to show up that is an easy fix. I know it won't happen but one can hope right?

MRI Results.

Well, I Had an MRI for my frequent and long lasting headaches. The nuerologist sent the results to my primary car physician to handle. Apparently, my brain is completely fine but my sinu cavities are completely clogged and apparently pushing up into spaces towards my brai most likely causing the headaches. She made a point to let me know that she's not sure how I'm breathing, let alone not having ANY sinus issues, no couch, no congestion, no pressure, no NOTHING. Also that she has NEVER seen this before. So she wanted to send me to the head and neck surgeon, but per protocol it got sent to the ENT first at which point I'm not sure exactly what they'll do. She did mention some sort of biopsy to make sure it is "just" sinus stuff and not something else especially with how it looked on the MRI. So, I guess this is good and bad and I continue to worry until Oct. 20th when my ENT appointment is.

A small update on Emma. Her G.I. was out of the office the day of Em's appointment so it go pushed off until Oct. 10. We're having major crankiness issues. She is waking up every 1-2 hours, dream feeding, in between screaming and whimpering. I can NOT put her down or the screaming commences. She will smile and coo and talk and be "happy" while being held but will scream like she's dying when she is put down. Part of me wonders how much of thiis is reflux related and how much is just a high maintenance baby. With that said though, there are MANY evenings where even being held doesn't stop the arching of the back or the obvious pain. I feel SO SO bad for her. She on max dose of prevacid solutabs once a day (we gve in the evening when her reflux is the worst for the evening/night). Cerafate 1ml, 4 times a day. This is also max dose it's meant to coat her esophagus, ease the pain and help heal. And in between the cerefate we give 1/2 teaspoon of mylanta. So every 3 hours she is being dosed with something and it seems like it's not helping, at least not as much as it should. She is still puking, sometimes projectile and large amounts. Seems she's constantly oozing and her most recent trick is to Ooze from her nose. Yummy. It's just so so so frustrating. We're ready for surgery, but are treading lightly. We don't really want her to have to go through it but are seeing no other options. Last thing her doctor said was "well, she's gaining weight". Of course she is, she dream feeds ALL night long otherwise she would be LOSING weight. We'll see what she says at this next appointment. But we're tired, frustrated, and not sure when to say enough is enough and press the issue further. At what point do say her quality of life and pain issues are more important than the fact that she is gaining weight etc. It's just rough!

On the Caden front. He had his evaluation with the special education people through the school district. He will have a series of them and meet with their occupational therapist, speech therapist, have his hearing and eyes checked again etc. They are also observing him at his current preschool and will do so a few more times to get a better picture as well as speak with his teachers about his behaviors and any concerning behaviors. This process can take up to 60 days but is sometimes shorter. We'll see what he qualifies for, if anything. They want to place him in the school that is most appropriate for his level of functioning (which is quite high). So we are glad that the process is starting to move along.

Life is like a box of chocolates...

First I'll give the new on Emma. She had two REALLY great days with the reflux, she didn't really spit up, was happy, slept more, etc. Then...a turn for the worst the last 3 days have been hell. Yesterday it took her an hour to eat a bottle at the mall and about an hour later she spewed it all over me and thr ground. It was a large amount. She was also quite irritable. when we got home she would take 2 ounce here and there, nothing major and was CRANKY. Last night she only woke up twice which is GREAT but when she woke up for the day I could tell she was in pain and I gave her a bottle burped her. she seemed ok. about 5 minutes later she threw up the entire thing. I don't think that amount coming up can even be considered "spit up" She is also on her new meds and while I think sometimes they are helping, I also think they're not seeing as she's still cranky, still spewing, and still not acting "happy". If she's still like this on monday I'll put a call into her g.i. and her ped for a weight check. On a good note she has been discharged from occuptaional therapy because 1) It's hard for me to get there will lily as well and workin around everyone else appointments. 2) She has shown me what I need to do to work with her. 3) She just about on par for her adjusted age. YAY

Onto me. I've had migraine type headaches which are progressively getting worse and lasting longer. They are not touched by anything over the counter and even some prescription things they've tried Midrin, tylenol with codiene, Maxult, and Both a shot of toradal and oral pills have not really touched them. The last one lasted 4 days. I cannot function when I get them and have had to have Sean come home from work. So after this last trial with the maxult and the toradol my doctor felt she should send me to the nuerologist.

So my appointment was today. I was fully expecting her to say they were just migraines and not anything else. After getting my history and complaints she said "Well, sounds like classic migraines" but let me check you out anyways. She made me walk acros the room and back, then do the same thing heel to toe (I had balance issues, not horrible but not great. I don't think I could pass a sobriety test) Made me close my eyes and she touched both feet with this vibrating thing. On the left foot I felt it on the right foot I thought I *might* have felt it but wasn't sure. Turns out I told her that I felt it about 10 seconds after she took it off my foot..Hmm. So I climbed up on the bed thing they have in doctors offices and she had me turn towards her she checked my eyes for dilation with the light. My left eye dilated far more than my right, so she checked again and the same thing. She had me open my mouth and wiggle my tongue back and forth. That was in working order. She di a bunch of pull here, don't leet me push you her, don't let me full you here. My left side has great reflexes. My right side is not up to par with the left and is "concernable".

Diagnosis: Unknown, hopefully just migraines and she would not discuss further. She wanted an MRI ordered because of the localized left frontal headaches and the reflex issues on my right side (The left side of the brain controls the right side of the body), as well of the over dilated left pupil. I asked her what all this could mean and she said that after my MRI that she would either call me for a phone follow-up or call me to come in for my follow-up. In the meantime she prescribed amergen to hopefully help if another headache comes on. It can take up to 6 weeks to get in for the mri, however she said she will put urgent on it and it should be more like a week or two. But I shouldn't hold my breath since radiology is busy. My other option is if it gets that bad again go to the E.R. Tell them I am being seen by a nuerologist, and am waiting on an MRI and they should be able to do it then and there. I personally refuse to believe it's anything else other than migraines, but none the less she was concerned which has me concerned and I will be until I have the mri and get the results. Hopefully.

Prayers and Good Thoughts appreciated.

G.I. Follow Up

A few things happened today. Today Sean and I started our medifast diets. the foods is pretty good but needs some "seasoning" and I ended up drinking 15 (8 ounce) glasses of water today. That is probably a first. And NO soda even though I am a pepsi addict and diet caffiene free is allowed. Anyways, I will be updating with my weightloss each week.

Emma had her G.I. Follow Up today. She is doing better overall. She is up to 12 lbs. 2 oz!!! She is spitting up less, Cranky less, and hasn't turned blue in over a week. I can't believe we have found something which is working. I am just in awe really. She ended up switching her to prevacid though to help even more and it's a solutab which dissolves quickly on her tongue so we don't have to fight to give her her meds. she also pescribed cerafate to coat her esophagus to help keep her from pain when she does have reflux. She is hoping this helps her start sleeping through the night and her crankiness in the evening when her reflux is at its worse.

Final good news for the day. At 7 months and 1 day old Emma Grace rolled from front to back AT the doctor's office for the VERY first time. She has continued to do this throughout the day. YAY Emma! I took a video and here is a link. It's a few minutes long and her roll is towards the end.

http://www.youtube.com/watch?v=wztW9YGd7ws Video of Emma Rolling

Sifting through Emma's records

Well, I've managed to get through 3 of the 5 folders of Emma's medical records (one folder from bellflower with nothing really remarkable in it) and the rest from The nicu. Uggh, After reading some of emma's medical reports it seems as though she was bagged with chest compressions (CPR) at LEAST 3 times that we were not aware of.Laymans terms she passed away and they brought her back. That make me so mad, but at the same time i'm wondering how I would have handled it at the time. The notes state that her heart flatlined, I take that as she passed away 3 times and was brought back 3 times. I had NO idea. ::sigh:: I'm still reading more. I have about 3 more HUGE envelopes to go through.It's therapeutic and disheartening at the same time.

On another sad note my Grandfather, Harold is in the hospital right now. He went by ambulance from his heart pounding out of his chest and sky high blood pressure. He has had heart problems since he had a quadruple bypas about 8 years ago. My mom called and let me know, but she didn't know a whole lot. I guess they sent out a test to see if it was a heart attack or what. Hopefully I'll know more tomorrow or within a few days. We're not even sure how stable he is. Prayers and good thoughts would be appreciated.

Medical Records up the wazoo

Well, I got the medical records from all 3 hospital stays for emma from both hospitals. I ordered them because we needed the ph probe and sleep study results from Bellflower and it was easier for me to get them than her doctor since Orange County and Los Angeles are not connected through the network yet. Anyways, I ended up requesting my record as well to see if there is anything that was "missed" or not told to us regarding WHY she was born too soon. They arrived and there are 6 huge folders (one is not pictured since it camr the next day)

I have gone over my medical records and aside from some rudeness in the notes regarding my "pre-term" labor which the hospital didn't feel I was havng up until the night before she was born. (Good thing I had a competant doctor) there were some interesting findings. Mostly from the operative report and the pathology report from the placenta. It states in the operative report that it appears as though there was a 50% partial abruption however no old blood was seen. (which could ndicate a new abruption and it was found at the top of my uterus). Incidently, this is the same space which showed for amniochorionitis (infection. I have a feeling the two are correlated). There weer also multiple "knots" on the placenta. Places where the tissue was rather hard and also had clusters of cells which were filled with excessive amounts of fluid. Not sure exactly what that means, but my guessing in laymans terms is that I had a less than favorable, unhealthy placenta which most likely began to abrupt and was 50% by delivery. This makes sense to me and in this case it's better she came out. It also makes sense as to why I was told numerous times after delivery that if she had not been delivered that she most likely would have passed away within 24 hours. I'm glad I trusted my body and persevered through the triages less than pleasureable experiences. I will update more with any findings that are "remarkable". Now for some recent pictures.

Up, down, up, down.

Well I put a call into Emma's G.I. She seemed SUPER irritable since being on the reglan. So she said that she thought that might happen and said we're going on the very last ditch effort. So she wants Emma on 5ml of prilosec twice a day and stay on the good start formula. We see her again on Tuesday. As long as Emma doesn't have any cyanosis (blue spells) we will hold off on the surgery. If she continues to have them then it's my understanding that we're heading to surgery. She also said to prepare for surgery just in case. So, I guess this it is. Sink or swim, hope this upping of the prilosec does its job.
At this point Sean and I just want her not to suffer. She is almost 7 mnths old and it's only getting worse, not better. So if this doesn't work, than we're ready to go for the surgery as well and accept the side effects that come with it. Prayers would be appreciated!
On a happy note here is Emma trying on her Halloween costume. We love fish in this house so she'll be a goldfish. Gotta love her face!

Pray for Sweet Emmie-Rose

There is a 23 weeker who needs some serious prayers. Her hospital is working against her and her survival is nothing short of a miracle. Please pray for emmie Rose and forward this link on to ANYBODY you think ycould help and pray for this sweet baby.

http://23weeks.blogspot.com/

G.I. Specialist

Emma had her G.I. Specialist appointment today. Basically, it was on okay visit. She has been diagnosed with severe reflux and DGE (delayed gastric emptying). Her doctor upped her meds again to 5ml twice a day. She's also started on Reglan at the very lowest dose of .7 ml 3 times a day. Her doctor doesn't like prescribing this so she won't be upping it. She also had us start on Goodstart which is predigested formula. She goes back in a week to be re-evaluated. The doctor would like to try everything before surgery and considers Emma's a severe case. If in a week nothing major has changed than her prilosec will be re-upped. After that there's nothing much else to do except surgery. So, that's the long end of the short of it.

As for me I've had severe headaches for months now. They come and go. I've had them more often than not lately and was in urgent care last night for it. I got a shot in my butt of torodol and some pills to take home. I also have to make an appointment with the nuerologist for a CT and a MRI.

That's about it for now. I'll post more when we know more.

We shaved Emma's head!

Emma's hair has progressively been falling out. It's to th point when we touch her hair it falls out. So, after much thought we shaved it off and she looks cuter than ever! We'll be talking to her doctor about the hair loss though!

Nothing out of the ordinary.

Emma had the Upper G.I. this morning. The test was quick and looked kinda cool on the screen. Nothing was found structurallu. He said he didn't see any refluxing yada yada yada. It lasted about 15-20 minutes. Her refluxing symptoms normally start somewhere around then. But I was more concerned abut structural issues since we already have 3 ph probes indicating reflux. So I guess at this point we start her on the Prilosec and take her back for a weight check in another week and go from there. This is getting exhausted. I'm tired of playing wait and see. I just wish there was something we could do to make her better right now. Hopefully, the prilosec is the key.

Appointments today.

The day started off with Emma's occupational therapy appointment. It went well. She doesn't feel like she has an oral aversion at this time, however she is concerned that if Em's reflux doesn't get under control quick that within just a few weeks she will. Emma is up to par with her age in most other things. Although she is a month behind her adjusted age in rolling over and she still keeps her hands fisted which should be gone by now. Or at least not so much. She is scheduled to see her again in 2 weeks to make sure an oral aversion hasn't started.
So, we ended up going to the kid's pediatrician to see Lily for her "well baby" visit and Emma for her eating issues. I guess I'll start with Lily. she has a classic case of Hand, foot, mouth disease. The worst of it is over hopefully. She is lucky though since she hasn't had a fever. She is in the 99th percentile for height at 33 inches and is in the 50th percentile for weight at 24 lbs. even. She is right on trac for development and actually a little ahead in most things. She was due for vaccinations but after discussing my concerns and my peds thoughts on delaying and not doing some of thenm we decided not to give them today and if I choose to continue vaxing in the future I can ask her later about it. The same with Emma and Caden.
This brings us to Emma. Emma has lost a little over a pound and is barely 10 lbs. It was waivering between 9 lbs. 15 oz. and 10 pounds. The doctor and I discussed a strategy and agreed that right now we do NOT want to cause her to have an oral aversion if it's something structurally causing it. She called the g.i. people and told them she wants Emma's test done stat. I have to call and schedule the appointment.l She scheduled her for another weight check in a week and she hopes the test and results will be done by then so we can see where to go from here. She also said that the zantac has had more than enough time to work and at this point the ppi is worth the side effects. So she prescribed prilosec 1.5 ml once a day. Hopefully, this will start helping!
I'll update again either in a week or when she has her gastrointestinal test.
Oh, and we got her an acid reflux pillow which should help keep her propped up. She doesn't like it too well, but we'll just keep working on her!

I didn't know it rains in August!

Well, when it rains it pours. At least in our house. Emma's feeding issues have worsened. We are charting times she eats when they start/stop, how much she takes and what "symptoms" she has while eating. Like whipping her head back and forth, gagging, sticking her tongue out, crying, etc. We've done this for the last 3 days and we'll be taking it to her ped tomorrow or tuesday. She wants her eating at LEAST 28 ounces and so far she has had 15 1/2 ounces, 17 ounces, 13 1/2 ounces, and so far today 9 ounces with 12 hours to go of the 24 hours. But she is just about sleeping through the night so I'm not real hopeful she'll meet her 28 ounces today either. It's strange because she used to eat 4 ounces no problem, within 15-20 minutes and she would have 8-10 feedings a day. She was a piglet. There has been a definite coorelation which her reflux worsening and feeding problems worsening and I'm not sure the hospital stay helped. There is a possibility she'll be getting a feeding tube, however I am concerned this may worsen the feeding problems, but at least she'll get the calories. It's truly a double edged sword. With that said she has an occupational therapy appointment on tuesday and I'm hoping she can help some or shed some light on the situation.
Lily is schedule for a well baby visit on tuesday however we might not use it. She has sores in her mouth, groin, etc. Somewhat like chicken pox, or hand mouth foot disease. Both are viruses and just need to run their course however we want her seen sooner just in case. She is miserable and cranky. Also, we're considering doing some very delayed vaxing or possibly foregoing certain vaccines so she wont be getting any shots anyways so I see no resason to wait until tuesday. We will probably try to get Em seen during that time instead of Lil. I hope she gets better soon. So far the bumps aren't too bad but I guess in a day or so we should know what it is for sure.
I'll try to keep this updated but life is hectic. If I don't post for awhile don't worry. If something major happens I'll update.

Emma's follow-up

Emma had her follow-up fwith her normal ped. em is now weighing 11 pounds even. Yay! Anyways, her doctor wants us to get her records from the hospital. She has a few questions on some things that were said/done while in the hospital. Anyways, she upped her zantac AGAIN to .6 ml. Hoping this will help the reflux. We also switched formulas to Enfamil A.R. for "babies who spit up frequently". Thus won't necessarily help the reflux, but it should help with the spitting up FROM the reflux. So far it's working. We're not sure the zantac is working. She been on it for over a month and is getting worse. The pediatric G.I. specilist she wants her to see (the best in the county) is on vacation. In the meantime she put in a referral for an upper g.i. test and when the specialist gets back she'll have a consultation with him/her. Apparently if the g.i. test shows something she'll have surgery. If everything is "normal" which I suspect tahn we might change her med to Reglan as a last resort. If she is staying the same or getting worse than surgery is back on the table. In the meantime check out a site I found for infant gerd that has been a phenominal wealth of information!

Click here to vote for my site at InfantRefluxDisease.com!

EEG and results

Well, we had a fun filled night with Caden last night. Lily went to Grandma's house so we just had Emma and Caden. We got Caden 2 small new toys to play with and took him swimming and to sit in the spa. We came home and all snuggled up on the couch with popcorn to watch "wild" (Madagascar). Sean headed to bed around 10:30 p.m. and I stayed up with Caden until about 12:30 or 12:45. Sean got up with Em in the night and got up with Caden at 5 a.m. I got up around 7 a.m. We grabbed Mc Donalds on the way to the EEG and Caden thought that was pretty cool.
When we got in the room for the EEG there were a bunch of wires and a hospital bed. Caden immediately started getting a little wild, jumping on the bed and pushing the buttons to make it move up and down. The nurse administering the test was really great with him. He did super while getting all the electrodes on his head. He started whining and asking for them to be taken off about 3/4 through putting them on. When they were done they wrapped his head like a mummy to keep them from coming off. I wish I had a camera. He looked cute. LOL.
The first part of the test they lowered the lights so it was dark and they had a super bright flashing light. They flashed the light quickly, slowly, and with eyes open and closed. After that was done Caden has to blow on a pinwheel for about 3 minutes. We bribed him with stickers for each minute he blew. We were ALL surprised how well he did and how well he listened. Then came the sleep part. I left Sean and caden to cuddle hoping he would fall asleep. I went and scheduled Em's follow-up from the hospital and went to the hospital gift store. When I came back they were unwrapping Caden's head. Apparently, he was NOT going to sleep. He was bouncing around, putting the bed up and down etc. So they called off that portion of the test. He wasn't too thrilled about me washing his hair in their sink.
We left and went to Sean's office for a bit. Caden of course took a nap in the car. We grabbed luch and headed back at 1:00 for his results. The Dr. said that EEG's only show seizures or seizure like behavior about 20% of the time. That means %80 of the time they go undetected by EEG's and the it is controversial whether to diagnose using EEG's. So basically, he said they can be worthless at times and in our instance it was worthless. He does believe he is having seizures or that he is having "seizure like behavior". He's going back in 2 months and they may do another eeg at that time. I don't think I'll allow it since I don't want to put him or us through it again. He has been whining and hyper since he had it done. He does NOT do well with little sleep and I have a feeling the next few days will be a heck of a time getting him back on his schedule. So the short story is we have to watch him and document any seizure type activity we see.
Emma has a follow-up appointment from the hospital tonight with her regular ped. We'll see if she wants any other tests ordered or if Em will be ok for awhile.

She's Home!

She's home. The ot never came and saw her so we'll be following up with her regular pediatrician. They upped her zantac since her reflux is pretty severe. They will monitor her and how she does on it. If she doesn't seem to be getting better with the meds or constant crying, etc. Than they will do another ph prbe and if nothing has changed than surgery will probably be the next step. She's still on antibiotics for her ear infections. They didn't send her home on an apnea monitor however her regular ped may order one for her. She LOOKS and ACTS a 100% better.

For the reflux she has to stay upright for an hour after she eats, sleep elevated. (they recommended a tucker sling. You can google it. Pretty pricey so i'm trying to figure out a way to make my own :)) Also being on her tummy is supposed to help with the reflux as well. So hopefully now that her ear infection is under control and we have the reflux more under control we'll be able to know what to watch for more and hopefully she'll be fine from here on out. They said the first year is the hardest with reflux.

Also, please pray for another mom and baby in the nicu. Her son is 12 months. He had severe reflux and had surgery for it when he was about 6-7 motnhs old. Well he came back in for vomiting. Turns out the surgery loosened. They had to redo the WHOLE surgery. Poor bubs is on morphine and in alot of pain and mom is a mess and barely hanging in there. Pray he heals quickly and that they can go home. Also, mom hasn't left the hospital even to shower in the last 3 days, hopefully she can get some rest too!