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!

Passing the time.

Here's the reader's digest version of what is going on. Em is still in the hospital and mostly likely will be staying another night or so. She has a 24 sleep study and ph probe test. She had wires everywhere and a tube going down her nose. She was miserable (I don't blame her). The ph probe test confirmed that she does have severe reflux. She is back on meds for that.

The sleep study report has not come back yet. There are concerns about her breathing. Not necessarilly full blown apnea, but definitely inconsistencies in her breathing pattern.

Also, she is still have feeding issues, gagging, turning her head, arching her back etc. Some of this could be caused by the reflux but an occupational therapist is coming to work with her and might order more tests. There are concerns that there is something wrong with her epiglottis (read about what it is and does here :http://www.innerbody.com/text/dige02.html) If there is a problem with it she'll most likely have surgery. Her infection spread from one ear to the other but she is an antibiotics for that and just generally acts and looks better. So that's where we are at now.

Another night...

The sleep study and ph probe tests went well so to speak. She didn't pull out any of her wires and they think they got the data they need. The results won't be back until sometime tomorrow. I ended up staying at the hospital last night (didn't get much sleep there! She had 1 color change during the night and is having major problems feeding. Not sure if it was from the tube down her throat or not. she's gagging, her oxygen levels are dropping etc. Hopefully, it will self resolve now that the tube is out. The nurse said she's ALOT happier now that those tests are over as well.

We're hoping they find SOME explanation for all of this and that she can come home tomorrow. I'm debating spending another nmight at the hospital or not. We have nobody to watch Lily so that might make my decision for me, unless I drive home at like 5 in the morning.

Sean and I are still hanging in here. We're both just really tired. One thing after another.

Caden's sleep deprived EEG is on the 8th. So we're somewhat prepping for that. Or I am at least. On a good note Caden has had quite a few good days at school lately. We got him a t-ball set and taught him how to hit balls yesterday. It was ALOT of fun!

Crap!

Em's doing ok. Sorta. They still don't know what is wrong but they have some theories. Her o2 levels are on the low side so she is on a low amount of oxygen. She also did the whole projectile vomiting thing again. Her spinal tap came back clear and she is on antibiotics. She DOES have an ear infection but something else is going on.

She is weighed down with tubes and wires. She is having a ph probe done to check for reflux, or rather how bad her reflux is. She is also having a sleep study done to check for sleep apnea and possible seizures. She is not too happy, screaming and trying to rip out the tubes in her nose. I was the only one able to calm her down so I'll be heading back to the hospital in a few. She might come home tomorrow if all is well, but she'll be coming home on monitors.

Sean and I are very tired and very worn out!

It never ends.

Just when we thought it was smooth sailing from here on out Emma caught a cold, or something. She was up all night screaming on sunday night. Monday morning she started projectile vomiting by noon she had a 103 fever. I fed her again and she coughed, puked and turned bluish grey. She did this again a few minutes later. We took her to urgent care last night. The Dr. tried to play it off like it;s just a cold and send us home. She didn't even look at Em's history or anything. I basically threw a fit so she called the doctor on duty at the hospital who said she wanted Em admitted and monitored but that they had no beds. So she saaid take...(another Kaiser hospital somewhat in the area about 45 minutes away). So we take her home fever goes between 99-104 depending on how long she's had tylenol in her. She had an episode early in the morning and another around 9. I called the Dr. who she had a follow up appt. with scheduled today. She said I could come in earlier however I couldn't because I had Lily.

I went to her appt. (my mom watched Lil) She was just about livid about the Dr. on call last night. She said she'll be writing a report. Anyways, she ran a blood culture, did a urinary analysis through a catheter, and a chest x-ray. All came back pretty much clean. So she called the doctor on duty at the hospital. Still no beds. Instead they transferred her to another hospital by ambulance. The new doctor is really nice and said he's a bit "over protective" but wants to get to the bottom of this.

Emma will be having a spinal tap tonight to rule out a brain infection (they don't always show up in the blood). Also there is something with a muscle at the bottom of the stomach which can become enlarged and close it off which results in projectile vomiting, fever, and decreased stools. All of which she has. He doesn't think this is it as it's pretty rare but if it is she'll have surgery. All of this is speculation at this point. So for now she'll be monitored. If no spells and the spinal tap comes back ok she might come home tomorrow. Although, they also want to do a stomach ultrasound. And she might be having another ph probe done for reflux to see if that's causing all of this. So for now she's in the hospital. She graduated to the big girl peds unit. No more nicu. Of course mommy had daddy bring the camera so I could get pictures just like everything else she has gone through.

Mommy and Daddy are doing alright. Both tired and trying to work out childcare for Lily so Dad can see Em in the morning and go to work later in the day and so I can be with Emma tomorrow. Continued prayers for Emma and also for the Doctor's who are taking care of her that they can find out what is causing all of this.