Thursday, December 31, 2009

wow i cant believe that another year is ending. its almost been a blur, especially here at the end.
i hate that the year is ending in such a limbo state for us. i feel like there are so many unresolved things and there is nothing i can do about it. with eli being so sick our whole world has been put on hold. my only resolution for 2010 is to tie up loose ends.

in other eli gained 1 oz. his weight this morning was 6lbs 2oz. the new meds seem to be slowly kicking in so our weight should slowly start going up. last night we missed a feeding and got off scheduale by almost 3 hours. i was completely freaked out by this and felt so guilty. today ive made sure to stay on feeding scheduale and he hasnt been awake and hungry enough to make up time but hes done well enough not to fall behind.
for a special nurse out there reading...hes still coming up with creative was to hide his meds and each time takes 15 to 20 minutes, hes peed on his dad during 3 scale times, hes working on his "weak suck", and he cried yesterday once so hold off on neuro! we miss you!

happy new year!!!!

Wednesday, December 30, 2009

mid week updates

we are now all under 1 roof. the 4 older kids came home yesterday. they are glad to be home and so are we.
life with eli has been alot harder than expected. his 1st doc check in took over 2 hours. they had trouble drawing his labs and it took 3 heel pricks and over 45 minutes. and we have to do that appointment weekly. we had home health out yesterday for his first regular visit. she was great with eli and super informative. she will be out atleast twice a week and hopefully starting next week she will be doing his labs here at home. we have his gi doc on monday but have had multiple phone checkins with her so far. she finally got elis meds fixed and we are back on the liquid prilosec. took alot of phone calls and insurance approvals but its done. we just started back on it last night so hoping for imrpovements soon. hes still throwing up every feeding and choking a bit again. should see that drop after a few days on the prilosec though. he has gained a tiny bit. as of this morning he was 6lbs 1oz. hes gained an oz and a half in a week and they are wanting that each day. hoping to not have to put the ng tube back in if at all possible.

the older kids are all good. they are ready for school to start back up. and the oldest 2 are ready for tkd to start back after the 1st. they are really missing it.

im doing ok. just exhausted. trying to keep up with everything. i live my day from alarm to alarm going off on my cell phone. mix meds give meds stop and start eats around meds feedings etc... there is something every 1.5 hours.
im also dealing with the fact that my dear ex brian has totally screwed up and wants me to fix it for him, yet he still doesnt want to pay child support. since i wont do it he has decided to harrass me and call me and eli names. go figure. hes always been willing to drop to a new low everytime he doesnt get his way so it should suprise me but its still just another stress that i dont need to deal with.

the kids are out of control and eli is getting fidgety again. more updates soon.

Sunday, December 27, 2009

things have been so strange being home. its all so much work. we are still struggling with getting his meds into him so hes throwing up alot. if he is held at all he throws up. so hes fed and immediately put down in his perfect upright position. i sooo miss holding my child. yesterday his weight wasnt good as he lost 1 oz. today he gained 1.01oz taking him back to 6lbs. home health was out yesterday to enroll him and his nurse will start monday. they will also be drawing his labs here at home so we dont have to take him out in the cold. we are keeping him at home as going out uses up to many calories. im not doing well with this as im home by myself 10 hrs a day and still home 24 hours a day. i miss people and being out and about.
sorry this is shhort and choppy but im typing it real quick from my cell phone. more updates soon.

Friday, December 25, 2009

Weight Gain!!!

It's been a long busy few days home. First they messed up Eli's meds and it took the pharmacy multiple phone calls to try and fix it. Finally got it fixed but the prevacid refuses to dissolve in water and huge grainy pieces sink to the bottom. So it clogs the tube and the syringe and clumps up in his mouth and he chokes on it. We've been on the phone with the pharmacy multiple times trying to figure out what to do to fix it. So he was only getting small portions of his meds so he of course started throwing up and getting super congested. We've been working as fast as possible to fix this. Then Mr Eli ripped out his feeding tube. Home health will be putting it back in tomorrow. He's been eating well, so we are happy about that. He's loving being back in bed with us at night and slept well last night. In other BIG boy news he gained! He was 6lbs even today!!!! A huge accomplishment. Now to keep gaining.

It's been nice to spend Christmas day with all 5 of our kids! We've had a great day and are now at my parents for christmas dinner! I will get pictures from christmas posted in the next day or two!

merry christmas and love to all!

Wednesday, December 23, 2009

Home for now

We are home!!! Mr Eli gained 2.3oz!!! This was his biggest gain so far! The docs came thru and decided that since he was doing well that we could go home. They got all the home health supplies ordered and taught us how to check the placement of the NG tube, and run the pumps and all of those things. They got all of his prescriptions and such set up. He goes to his pediatrician once a week for checks and labs, his GI doc once a week, home health twice a week minimum, and the RN's will be on call anytime needed. Right now he seems to be donig pretty good with the NG tube and hasn't choked since we've been home. His meds weren't easy to get him to take tonight so we'll be having to call the doc tomorrow to figure out how to make it better. It's a bit strange and scary being home and parts of our house look awfully hospital like. Strange. We are soooo glad to be home for Christmas though!!! More updates soon!

Tuesday, December 22, 2009

Tuesday Update

It's been a fairly busy day and so I haven't had time to do multiple updates. Today we had the regular pediatric doc, the GI, SLP, and the ENT. Oh and medical supply lady in getting the breastpump and the NG pump ordered.
Mr Eli has to gain 1+ oz for 2 days straight and not choke to be able to go home. Today he lost 1.6oz and has choked twice. SLP is concerned that he's silent aspirating. This is way worse than just aspirating. ENT says the left nostril is smaller but still completely open. He says the nasal passages are definitely inflamed and red from the reflux. This is fairly normal with reflux kids unfortunately.
Today has been adjusting feeding and trying to figure out when to breast and when to step in and supplement with NG feedings of breastmilk. It's all quite the balancing act. This evening Eli pulled out his NG tube so they are going to leave it out for a bit and see how he does and give his nose a break.
More updates tomorrow.

Monday, December 21, 2009

Monday morning Update ***Evening Update***

****Evening Update****
His GI doc came in the afternoon and decided to put the NG tube back in. When he has the tube he doesn't choke as much and then we can add some extra breastmilk to try and help get his weight up quicker. He's already tried to pull it out twice since putting it back in. He's nursing a bit better this evening, so we are hoping to see some weight gain tomorrow morning.
They've had a heck of a time getting in touch with the ENT and finally got in touch with him late today. He's supposedly coming tomorrow to do the scope. Really hoping to get some answers.
Mr Eli is having a bit of a grouchy evening so not sure how the night will go.
More updates tomorrow with photos!

****Morning Update****
Well we had the Swallow Study this morning. It isn't good. He is aspirating as he eats, even with the thickener. They are also having the ENT and the GI doc both come and run scopes. We have to figure out what's going on and how to fix it. He gained weight yesterday but barely. 5lbs 13.7oz
I'm beyond frustrated and we get so much conflicting info and I'm just losing my mind. We also have major cabin fever and are getting pretty darned lonely.

Sunday, December 20, 2009

Santa Sunday at the hospital

It's been a fairly slow day around here which is nice! This morning Bob and I hung out with Mr Eli and played Wii for a bit. It was nice to relax a little. Then the charge nurse gave permission for our 4 kids to come to the pediatric waiting room and hang out for a little while with Mr Eli. So we got to spend time together as a family, all 7 of us for a few! while they were here Santa came! The kids all got candy canes, and stuffed animals, and stocking full to the brim of toys and gifts and candy! It was nice to get to have a Christmas moment together as a family. For Bob and I right now it's like Christmas is frozen. Up here in the middle of the hospital you sorta forget that anything else is actually going on in the real world. Before I had Eli we decorated the house, bought and decorated our tree, and bought all the ingredients for Christmas baking. Our tree is dead, the decorations who knows, and not a single thing has been baked or done. I feel so bad for our kids that there really hasn't been a Christmas for them so far this year. This is normally our family's biggest time of year. We are hoping to be able to salvage a bit of Christmas but we just don't know yet.

In other news Mr Eli gained weight. He weighed in the morning at 5lbs 13.4oz which is 1 1/2 oz weight gain from yesterday! We are keeping him as calm as possible and working on eating and gaining today before all his tests start back up tomorrow. We are still working with the nurses to try and figure out how to get him to take his meds, as he doesn't like the flavor and holds it in his mouth and then chokes on them. Not fun. Other than that no new news!

Here is a photo from today of Mr Eli hanging out with his dad!

Saturday, December 19, 2009

Quick Saturday afternoon update ***evening update***

****Evening Update****
Doc came by and did rounds. Eli will be having a Swallow Study and his scope done on Monday. That will let us know if he needs the NG tube put back in, surgery, or nothing. So we wait. We are weighing before and after all feeds right now, and charting all choking and such. Hoping to gain weight again tomorrow.
Our nurses are amazing. Today we went and inspected empty rooms and decided we like ours the best (we have the 2nd largest) and our nurse helped us "borrow" furniture from other rooms to make our room super nice! So now we have our bed, Eli's crib, a large round dinner table, 2 chairs, our recliner, the large hideabed chair, our rolling table, a dresser, and his scale! :) So it's fairly comfy and we have room to play games, eat meals together, and spread out. She figured since we are long term we should at least be comfy! :-)
This evening Eli went and hung out with the nurses and Bob and I had a quiet dinner in the cafeteria and went on a walk! It was great to have some time away together. Eli did well, and all the nurses love him!
More basic updates tomorrow, but won't know anything major until Monday!

****Morning Update****
Last night Eli dropped his heartrate from 160 to 80. They ran EKG's at 4:30 in the morning and hooked him up to a portable monitor. He's kept it up since.
Mr Eli met with the speech pathologist and she discovered some problems. They are also going to be doing an esophogial scope and having a neurologist do an evaluation. We will now NOT be going to KC on Monday as they are now trying to deal with the new issues that have come up before sending him for major surgery. So back at the beginning with tons of testing on the new stuff. They are hoping that all of this will give us the answer on why he's choking, and once we can figure that part out we can fix it which will make eating easier for him, which will help him gain weight, which will make him stronger for surgery and all of that good stuff. It's a vicious cycle really.
The good news is he did gain weight. He was up to 5lbs 11.8oz, which is 1.8oz gain yesterday. so we are definitely happy about that part.

Friday, December 18, 2009

Renal Scan Results

Mr Eli lost weight. He had gained 5oz in 4 days and yesterday he lost 2.5oz in 1 day. Not good. If he doesn't gain weight tonight we are back on the feeding tube tomorrow. He also had the renal scan this morning. Both kidneys did take on dye. The left fast and full, the right incredibly slow. Both drained, the left well, the right barely. The right is huge and VERY strange shaped with tons of dead tissue in the middle. Doc came by and Kansas City it is. She's calling KC to get the transfer papers going and to talk to the urologist there. Looks like though we will be heading up there on Monday.
Oh and his lungs xrays came back. He still has some of the puffiness but looking much better. So the antibiotics are working. Also kidney infection looking good!
We are going to try and sneak home on Sunday and have Christmas with our kids.
So now we are just waiting for some weight gain hopefully and for all the transfer info.
Here is a picture of Mr Eli in his Christmas PJ's this afternoon.

Thursday, December 17, 2009

Busy...update super late

It's been a LONG and BUSY day. We've had so many people in and out and so much info and so many changes today.
Eli got super fussy last night and wanted to nurse so badly. So they adjusted today and he had an NG feeding at 6am and then no more, and he was able to nurse all day. Then this evening Bob and I went home to see our older 4 kids and he had 1 NG feeding at 7pm. He did well, he is still choking and gagging but not turning blue. They are hoping he "re-learns" how to pace himself while eating.
They redid his kidney labs today and we are waiting on them. If all looks good, they will be doing his renal scan tomorrow. If his kidney has no function left then he will have surgery here, as they will simply be removing all of the kidney and tissue. If there is some function left he will either be transported by ambulance to Kansas City or soft discharged into our vehicle and we have a few hours to immediately drive there with him. And then after we know which surgery we are having, then they need to decide how quickly. Immediate is starting to look like the best route as we can't keep having kidney infections but if he has to wait to gain a few more he will have to have full kidney testing and VCUG's every single week until he weighs enough. So we wait until tomorrow night or Saturday morning to know for sure.
He did gain weight. 5lbs 13oz, which is another 1.4oz gain. Hopefully he will have gained today or he will have to go back on NG feedings as well as nursings. We will find out in the morning.
That's all for now. Mr Eli is wanting to nurse.

Wednesday, December 16, 2009

Morning update ***Evening update added***

Got the labs back. Potassium is still way to high BUT it was also hemolized again. So we still don't know if it's his kidneys or the dumb lab lady messing up. Tomorrow they are going to have someone else draw it and if it's still high she says we will have to start looking further.
In other news they've slightly increased his feedings as he seems to be hungrier more often. I'm having an almost impossible time keeping up with the pumping, and have started taking fenugreek to try and help.
He went with his swing and hung out at the nursing station for an hour this afternoon so bob and I could go on a walk, pump in quiet, and take a tiny nap. It was super nice to get out of our room and have a few moments together. The nurses all think he's super adorable and had fun hanging out with him. :)
Won't get another update up until tomorrow unless something major happens.
Tomorrow evening we are HOPING to leave him with the nurses again for a short period and try and run home and see our older 4 for a few. We haven't seen them since Sunday. Definitely missing them.
Many thanks and love to all!

The doc just left from morning rounds. Eli's potassium is high. Retesting. Either from to many draws or from kidneys not working right. He gained again. gained 1.6oz!! total weight now of 5lbs 11.6oz which is 0.1 oz over his birth weight! adjusting his NG feedings today, continuing with nursing every 3 hrs. nothing else new yet. Will update as we get labs back today. Sorry so short but a bit busy around here this morning.
Here is a photo of Mr Eli and all of his tubes trying out a swing. He's so tiny, it goes to fast on the lowest speed, so we were able to hang a towel over the end to give some drag. :-)

Tuesday, December 15, 2009

Update from rounds

Here is a new photo of Mr Eli with his newest addition...his IV.

Doc just left. Eli has a kidney infection and aspiration pneumonia. They are going to treat this agressively. Starting on IV antibiotics, continuing oxygen and NG feedings. They will recheck in 2 to 3 days. Renal Scan has to be put off until infection is gone, hoping to do it by the end of the week.
They will be rechecking labs daily to make sure his kidneys and liver aren't being affected from high dose antibiotics.
Here is a photo of Mr Eli after his bath this morning!

Monday, December 14, 2009

Before bed quick update

Eli started dropping his oxygen even when not feeding so now they have oxygen constantly set next to him blowing in his direction. That seems to be helping him keep his levels up in the 90's now! His last nurse time they turned his NG off for 30 minutes beforehand and he actually latched on and nursed for 10 minutes. The nurse was right by us with suction and oxygen ready and he didn't need it!!! We kept him upright and he didn't throw any of it up. He immediately went back onto his NG feedings afterwards. He's getting 1/2 an oz every 30 minutes, all breastmilk. They were able to rig up his crib here and we just layed him down to see how he will do. Not having our king bed and not being able to lay him down it's a bit hard to figure out how all of us will sleep. He's got quite a bit of tubing and monitors too. We'll see how it goes.
His urine test came back with a bit of protein, blood, and bacteria. They are running a culture and we won't get those results till middle of the night or morning. This evening he ran a low grade fever again for a bit, but at the moment it's gone. Keeping a close eye on that. He will get a new weight in the morning and we are sooo hoping for a gain. Also hoping he is good and hydrated so they can get his renal scan going in the morning.
This evening we had 2 friends come up and hang out with us for a few hours. It was sooooo nice to have adult conversation and talk and joke and have some fun. It was greatly needed and very much appreciated! More visits tomorrow and looking forward to them as well!
We are going to try and catch a touch of sleep. More updates as we know!


OMG. This has been the longest day of my life. Eli woke up this morning with a fever. Immediately called the doctor as directed, and she immediately sent us to the hospital. He had a fever, but no symptoms so the fear was kidney infection. Got to the ER and immediately got a room, and within 5 minutes they were getting him a bed on the pediatric floor. His oxygen was dropping below 70 as he was trying to eat and he is turning blue. His urine was cloudy, so they are thinking infection. They got the pediatric GI in here and she has changed his meds, and ordered an NG (feeding tube). Right now they are giving him his feeding constantly thru the feeding tube (still breastmilk) and then having him latch onto the breast every 3 hours so he doesn't forget how to suck. They are going to rush the kidney scans, hoping to do them tomorrow. They think the kidney is making the reflux worse. So now we are looking at surgery on the kidney and considering surgery for the reflux. He lost more weight as well. We are here indefinitely and on the feeding tube indefinitely. He needs to gain weight to have the surgeries, and having the surgeries would ultimately help him gain weight. It's a catch 22. So here we are at the hospital hooked up to monitors with the feeding tube. We are overwhelmed and scared and have no clue what to think or do. We just keep being told he's so tiny and so sick. We know these things, we just want to know what to do to make him all better. I'm freaking out...beyond those who know me can imagine.

People keep asking what help we need. Here's what we need. We need meals brought up for us (we are covered for the next 2 nights) and my parents could use meals as they've gone from feeding 2 to feeding 6. Also they need a few days/hours of child care for my little 2, as they have some work meetings and such that they can't rescheduale. We could use some company once in awhile when people have a chance. We also need as many prayers as imaginably possible.
We are soooo blessed to have so many amazing people in our lives. We can't thank all of you enough. The meals, the texts, the phone calls, the check in, the support, the listening to me freak out on the phone, the visits..

choking and breathing issues. gotta go. more updates later.

Sunday, December 13, 2009

Long Night

Last night actually went a bit smoother than expected during the earlier evening hours. I convinced the younger ones to watch some TV and got the older ones to help with a touch of housework. I got the kitchen completely cleaned up, for the 1st time in like 2 weeks. (ooops) As the evening went on though Mr Eli got more and more uncomfortable. The night ended with me sitting up for hours rubbing his tummy so he could stay slightly comfortable. I did this until around 4:30am and then Bob took over so I could get some sleep. Poor little man. I'm beyond exhausted and my head is throbbing from lack of sleep. I'm so hoping that tonight goes better for my tiny man.
I wish I could take this all away from him. Magically make it all better.

Tomorrow starts the kids last week of school before Christmas break. I'm hoping to get some things done around here to make things a bit more organized before they are home for over 2 weeks. I'm hoping to also get some projects put together for Benjamin to try and help with some of his destructive tendancies. His psychologist gave us suggestions that I'm hoping to try out over break. Also hoping to get some potty training progress done with Ms Ari. She's so close, and as much as I'm not ready to do this right now with a newborn, I hate to lose what she's wanting to do on her own.
I'm also hoping to get some knitting done! I still have yet to knit since Eli has been home. I have 1 Christmas present left to finish and 2 stockings to finish. I'm hoping to get it all done but sadly at this point I'm not holding my breath.

Saturday, December 12, 2009

5 Kids Tonight

My 4 big people are officially home (for now anyway). Tonight I'm home alone with the 5 of them. Should be a long, interesting, exhausting, hopefully partially fun, night. :)
Emily~ She is doing good. Her Battle of the Books program wraps up next week and then they find out who won and gets to continue on to the competition. She has joined Tae Kwon Do and is loving it. She's catching on super fast and last week the teacher even used her as an example for the class, since she was one of the only ones to have a certain form right.

Jace~ He is incredibly busy right now. They finally got his speech started at school, and he is also doing math and reading tutoring 2 days a week after school. He then has Tae Kwon Do 2 nights a week as well. Last week he had his testing and passed, so he got his yellow belt! Such a big accomplishment for him!

Benjamin~ He's just Ben. :) That really sums him up. He started seeing a psychologist last week, who specializes in autism. She was great and had alot of good suggestions. She will begin some testing and we are hoping to find some things that will stimulate him in a safer way than what he is currently doing. She gave us some good suggestions to deal with some of his destructive behavior. He's doing well at school, and loves being there. So that is always a good thing! The tantrums and obsessions and destructive behavior continue and it's exhausting to have to keep such a close eye on him constantly.

Ariana~ She's doing good. Right now she is going thru testing for when she turns 3. At that point she will be turned over to the school district and will start Preschool. I think she will do very well, as she's super social. She decided about 2 days after Eli was born that she wants to start potty training and she's slowly working her way thru that. I think ultimately once life settles down a bit that she will get it figured out pretty fast!

Elias~ He's the same. He's been choking and spitting up alot the last 24 hours so we are back to trying to be creative and come up with new positions to nurse in and to sit in. He gets uncomfortable and super fidgety come evening time and it's hard to get him into a position that he's comfy in at all. He gets the hiccups constantly; it's apparently a side effect of the reflux; and it makes him pretty angry to have them so much.

Bob and I are doing as well as can be expected. We are exhausted, and trying to keep life as normal as possible, especially now that the older 4 kids are home.
Ben and Ari are supposed to be napping right now, Jace and Emily are playing their new Wii Monopoly game, Mr Eli is sitting in his boppy on the couch next to me hiccuping, and I'm about to fall asleep. :) Let the fun begin!

Friday, December 11, 2009

The News isn't good...

We are home from the urologist. We mostly have an answer. Eli virtually has no right kidney. The kidney is so damaged that there is virtually no kidney tissue left, and there is no way of saving the rest he thinks at this point. Eli is to small to have surgery right now, so we wait. On January 22nd he checks into our local hospital for a neurophysical biochemical kidney profile. They will fully test both kidneys to find out how much function he has. They are expecting none on the right and hoping for full on the left. His left on the sono's during pregnancy was barely enlarged, so now the full extent of how well it is working is incredibly important. After all of this Eli will be sent to Kansas City to a pediatric urologist surgeon for surgery. The surgeon here isn't comfortable operating on such a young small patient with so much damage.
Nobody told us during this process that we would simply have no kidney at all. We were told, oh it's normally a blockage, surgery to fix it, all better. Nobody mentioned the possibility of so much damage that we would simply have no viable kidney left. My head was spinning when the doc told me, as this wasn't something I was expecting at all, never had crossed my mind. Then I think back thru the whole pregnancy. I never took a tylenol, a tums nothing. I had that damn horrible rash in early pregnancy that many of you remember and put that medical cream they gave me on it, but that's it. nothing else. i never took a single damn medicine. hell i craved freaking salads this pregnancy. i ate well, i did everything perfectly. i'm just frustrated and stunned and no flipping clue what else.
so now we wait...and we try oh so hard to gain weight. we are hoping the meds start working for his reflux quickly and that the throwing up will subside so we can finally begin to gain some weight.
we are exhausted. feedings are so time consuming, keeping him in the perfect position, pacing him while nursing, making sure he doesn't choke. Then keeping him upright after each feeding, and making sure anytime he isn't being held that he's upright as well. we have spent more time at the hospital than home. we've eaten virtually nothing in days, maybe 2 warm meals this week. the house is a mess. we haven't seen our 4 kids for the last 3 days, and they've only stayed with us 4 out of the last 11 or 12 days...i've lost count. i miss my kids, i miss a normal life. i'm exhausted and hungry and tired and i don't know.
eli and i are home alone. may take a nap with him, may just stare at him while he sleeps, may just curl up in a ball on the couch and cry....may do all the above.

thank you to everyone for all of the support. i have no freaking clue how we would be making it thru this last week and a half without the support of all of you! we are truely so blessed in so many ways!

A Few Photos of Mr Eli

Thursday, December 10, 2009

Another quick Eli update

We are home from the urologist. Eli checks into St Francis at 7am tomorrow for a VCUG. He is to little to be sedated so we will see how that goes. This will check to see if the urine is refluxing back from the bladder into the kidneys. Then back to the urologist at 1pm to find out what we are going to do next. The big kids are still staying with my parents, so it's just the 3 of us here tonight. We are beyond exhausted and hoping to rest a bit tonight before we head back to the hospital tomorrow. We will update more when we can.

Thank you to everyone for all the kind wishes, prayers, thoughts, food, drinks, check ins, and company!! We are soooo blessed to have so many amazing people in our lives!!! love to all!

****I keep forgetting to post this. My good friend who is an amazing photographer took some newborn photos of Mr Eli last week. Here is the direct link to her blog so you can see a few of her photos! Photos of Mr Eli

Wednesday, December 9, 2009

Quick Hospital Update

After almost 8 hours we are home from the hospital for the moment. Eli does not have a bowel obstruction BUT his right kidney is incredibly large, all the way down to his bladder, and he has Level 3 reflux. His kidney isn't causing the problems, BUT it is making the reflux worse potentially. His doc immediately started him on medication for the reflux, and he is back at the doc in the morning for a weight recheck and he will be going to a urologist for deeper testing on his kidney. She gave some reccomendations on different positions to nurse in, and to help him pace himself with nursing, and soooo many more instructions.
We are all exhausted and hoping to get a bit of sleep tonight. More information tomorrow.

headed to hospital

1 week out of the hospital and he's headed back. started spitting up 2 days ago, started changing colors. its so much he's gagging and choking on it. this morning it was glow in the dark yellow/green. Doc is greatly concerned. admitting him to St Joe, she thinks it's either kidney not functioning OR a bowel obstruction. labs, renal ultrasounds, upper GI's etc..steadily losing weight and she's concerned. We will update when we can.

Friday, December 4, 2009

We are Home!!!

It is soooo nice to be home! Little man is doing well. He's peeing and eating well so for now they are happy. He will have his kidney ultrasound when he's 2 weeks to get a better idea of what is going on. His weight dropped down to 5lbs 7.7oz which is nothing out of the normal for a newborn! He will go to his pediatrician next week and have his hearing and such rechecked, so we won't know more until then.
He's doing much better with the spasms, so it definitely looks like it was simply a slightly under-developed nervous system that made his nerves and muscles a bit overly jumpy. As the nerves have settled down he's able to sleep a bit more comfortably which has been good as well!
His siblings got to meet him yesterday and they were all sooo excited! Ariana's first question was why does he have hands! Over and over! LOL. Everyone got to hold him and they all thought that was great! I didn't have the digital for that so as soon as my mom gets her camera developed I will post those 1st pictures!
We will get more photos updated soon! Promise!

Wednesday, December 2, 2009

Annoucing the Arrival of....

Elias Richard. Born December 1st, 2009 at 4:02pm. He weighed 5 lbs 11.4oz and was 16 inches long.

We got to the hospital on the 1st at 6am. Had the amnio at 9am, and got the results around 11am. His lungs were ready and Dr J decided induction was the way to go. I was dialated enough that Dr J agreed to just break my water and not use any pitocin and see what happened. He broke my water at 12:11pm. I needed nothing more. I labored on the birthing ball at the very end to make it thru the last little bit of labor. By the time I felt the pushy feeling beginning I was 8, and a few contractions later knew I couldn't wait any longer. They paged Dr J but he didn't make it until a few minutes after Eli was born. Dr J atleast got to deliver the placenta! :) Eli was doing well and holding his own.

He did pee immediately after being born, so that gave the confirmation that his kidneys were indeed working. He is having alot of muscle spasms and they think this is from his nerves not 100% being developed. He had a cranial ultrasound this morning to check for brain bleeds and it came back good. They've also been checking his blood sugars and they have all come up well. Right now it's alot of swaddling, strong holding, and no gentle touching. That seems to help. He's nursing wonderfully so that is definitely a good thing. Here in a little bit they will be running more lab work and checking his electrolytes to make sure there is no imbalance there. He didn't pass his hearing test in either ear this morning, they are thinking it's a bit of fluid from birth, so he will be retested tomorrow morning and then they will go from there. Apparently his testicles haven't dropped and are still in his abdomen. This is something they will watch over the next month or two, and if they do not descend on their own then he will need surgery to bring them down. Time will tell on that one.
He will be sent to a pediatric urologist when he is 2 weeks old for kidney testing and ultrasounds. Since he is passing urine, they want to give his body a chance to stabilize before they do all of the testing. Obviously if he begins having problems they will do the testing sooner, so we will keep track of his wet diapers!
Lastly he had a jaundice test, and it's slight but nothing to worry about so that is also good! All in all he's doing super good!
I'm feeling great. My labor was less than 4 hours, no meds, no pit, no nothing, and the only thing on me that is sore is my danged right hand where they put the dumb IV for emergencies. :)
And I know everyone wants photos so I'll end with a few of those! :)

Tuesday, November 24, 2009

Home from Ultrasound and Doc

This morning was our 36 1/2 wk ultrasound and doc. It was definitely not good. Mr Eli has only gained 3 ounces in 3 weeks, which is obviously a huge problem. His kidney has also enlarged some more, now up to 2.3, and the other biggest change is my amniotic fluid has gone from 14 to 23.5, which is now way to high. Dr J thinks we are pretty much hitting the point where Eli is going to be better out than in. He wants to simply get to 37 weeks, so he called the hospital and they have me schedualed for Tuesday Dec 1st, check in at 6am. I will have an induction and assuming his lungs look OK I will be immediately induced afterwards. Nobody knows what to expect as right now Eli only weighs 4lbs 13oz. Dr J thinks the massive amount of amniotic fluid is what is causing the major pain and cramping in my back and stomach and some of the discomfort with taking deep breathes. He thinks the placenta simply isn't functioning anymore like it's supposed to.
I'm numb and freaked out all at the same time. I have so many things I still need to get done. I'm not even sure how to prepare or what to prepare for as we have no idea what to expect after his birth. It's going to be a long week and a fast week all at the same time.
I will update more as we know more, and I promise to get some new pictures up of the kids over thanksgiving.

Thursday, November 19, 2009

Quick Updates

Tomorrow is 36 weeks pregnant! Thank heavens I'm nearing the end. I've been having alot of pain and discomfort the last week or so. My doc is almost positive it's from my surgery and there is nothing that can be done about fixing it but delivery. I'm just focusing on getting thru each day and getting ready for Mr Eli. Today I decided to get all of his clothes and things washed, and tomorrow I am hoping to get the last of the shopping done. I don't have much left, but I will feel better when it's all done! We have our next ultrasound and doc appt on Tuesday morning so we will know more then!

The kids are doing pretty good! Emily has decided to join TKD and they were able to get her started this coming week instead of her having to wait until the beginning of next round. She's super excited to get started. Jace is still loving it and is excited for Emily to join him so he'll have someone to practice with! Benjamin is busy with school, and is learning to write his full name. He's asking alot of questions lately including why his name has so many new and weird letters! :) Ariana is in the middle of testing for her IEP. She had her 1st round this last Tuesday and did really well. She will have more the week after Thanksgiving!

Other than that we are just getting ready for the holiday and Mr Eli. I will get new pictures up this weekend and hopefully some photos of the house! Super behind on that!

Saturday, November 14, 2009

My Literal little boy

Mr Ben has always had trouble understanding meanings and hidden things and takes everything very literally. It's all taken at face value and if that's what he sees or hears then it's set in stone that this is how it is. We left our house this evening to head to my parents for dinner. I just had the little 2 with me as the older 2 were already over there for the afternoon. As we were loading up the church by us had their church bells going. Ariana stops and asks what this is. Ben looks around and informs her that it is music from Santa's workshop. She's completely happy with this answer. We get to my parents and the kids want to watch a movie. So my dad puts on the 1st Santa Clause movie with Tim Allen. Ben watches the 1st few minutes and comes into the other room with mom and I. We were discussing christmas presents and asked him to go back and watch the movie. He informs us that he doesn't need to. Santa's Dead. We attempted to explain that he needs to actually watch the whole thing and that santa isn't actually dead. He says nope santa's dead. In his mind the movie is complete and it's all over. It will be interesting to now see how the Christmas season goes and what he tells the poor unsuspecting children at school.
Oh and to finish off his christmas discussion. Mom was asking him who's birthday is at christmas, as they were talking about church and such. Benjamin looks at my mom and informs him that it's baby Eli's birthday. He keeps asking us when Eli is coming and as an easy marker for him we just tell him at Christmas Time. So apparently he is now confusing all of these things together in his mind. Poor Ben. :)

Friday, November 13, 2009

Ultrasound Today

Today we had the ultrasound/biophysical profile. Mr Eli's heartbeat was 146, so again right where it should be. My amniotic fluid dropped from 17 to 14 BUT this is a small drop and completely normal for end pregnancy so no worries there! The good news is my little man is head down now exactly where he should be. We were all a bit surprised, because the hear really was that my muscles from surgery were going to simply prevent him from flipping. The bad news is his right kidney was now 2.1, the last ultrasound he was 1.81 so again it's enlarged more. (normal is 0.7) So still watching that. We will have another ultrasound in 1 1/2 weeks. So Dr J assumes that all the cramping and discomfort the last 2 days was from Mr Eli flipping himself into the head down position! Well worth it for that! So we are back to waiting but I'm sooo much more at ease simply knowing that atleast he's head down, so that cuts the c-section out of the equation!!! YIPPPEEEE! Oh and today is 35 weeks..time if flying!

Thursday, November 12, 2009

Last Minute OB appt

I ended up with a last minute appt today at the OB. I woke up this morning feeling really crampy. As the day went on the cramping got a bit worse, especially in my lower back and I had alot of pressure. Dr J had me come in. Eli's heartbeat was still good at 142, but it was located this time on my left side about halfway down my stomach, which is competely different than before. So the question is did he try to turn and got stuck so that is why I'm having so much pain and discomfort and cramping. Dr J is concerned that if his kidneys have swelled more and are having a harder time functioning that will cause my amniotic fluid to decrease which will make it harder for him to turn. So tomorrow he has schedualed a complete ultrasound and a biophysical profile. He wants a breathing score, full weight and size, full kidney assessment, amniotic fluid levels, etc...So we are hoping to get more info. In the mean time I'm supposed to relax and not do to much. Easier said than done with 4 small children, and an exhusband who refuses to stop harrassing me. :)

In other news we did hear back from Ben's school. She spoke with the social worker and she got some numbers she wants to call and see what kind of extra support we can get for him since he's struggling. We will be working with them and making some of these same phone calls as well, so hopefully we can get some answers quickly.

Jace is doing well. He had TKD again tonight and absolutely loves it. It really keeps him busy. He has his 1st round of testing coming up in December as well as a family Christmas party. He's doing well in school, and has had a slight homework break so he's really enjoying that!

Emily is doing pretty good. She's been super busy with a research project. It was a pretty large project that has taken her the last 2 weeks. It's due tomorrow and she's really glad that it's going to be all behind her! Now to go back to focusing on all of her reading projects and assignments!

Ariana is doing well! She's enjoying having her own girly room where she can play kitchen, dolls, and dress up. She begins all of her testing next week for her Transition and IEP and I'm very curious to see how she does with it! She has great workers and a great time so I'm confident she'll handle the stress of it all well!

More updates tomorrow when we are home from the ultrasound!

Tuesday, November 10, 2009

34 1/2 week OB appt

Had my OB appt this morning. Mr Eli's Heartbeat was 144, which is good. The bad news is his head is right up partly under my right rib still. Not where it should be. Dr J had trouble feeling the exact positioning of the rest of his body as my stomach muscles are still sooo tight from my surgery less than a year ago. With my muscles being shortened and sewn together it makes for a whole different pregnancy situation. Dr J says he doesn't think manual turning would even be possible with how my muscles are, not that he's willing to do that anyways. We don't have any more updated info on his kidneys or his weight until my next appt/ultrasound on November 24th. Dr J says if at that point he is still breech then a c-section will be schedualed. For those of you who know the M & M story, Dr J said he forgot to tell us that Peanut M & M's are the only ones that work! :) gotta love him! In other news I've shrunk 3cms in the last 4 weeks, so not sure what that is about, just soooo hoping that Eli is still gaining good week. Anxiously awaiting the next ultrasound.

In Benjamin's world. Finally got a call back from his teacher, who is putting out the word to his social workers and we are going to find who in the community is will to take on Ben's case and get some plans figured out. The only changes at school his teacher said is that they stopped using his individual TEACH scheduale and he is using the class scheduale only. She says he seems to be doing well. She is at just as much of a loss as we are, so hopefully with everyone involved we can figure out what is going on. I love him to death but I SOOOO exhausted. Yesterday was a day of questions and he obsessed about them most of the day. We spent large quantities of time yesterday discussing what bug eats paper. He wasn't happy with any of our answers and we were never able to figure out what he was wanting. He is now sleeping in the loft right outside of our bedroom where we can constantly keep an eye on him, his privacy has been completely taken away and he has very minimal things, and someone is constantly following him around. It's rough on everyone but we don't know what else to do right now. We can't have him hurting himself, or his siblings, or burning the house down.

Thank you to everyone for the kind words, emails, posts, and offers of help. I've been super slow to respond, and I know even when I have it's pretty vague. Unfortunately we don't know what we need for help. It's a constant and hard to say what would or wouldn't help. So if we don't respond it's not that we are being rude, we just have no idea right now. It's basically daily survival mode.
Love and hugs to all!!!!

Sunday, November 8, 2009

Jace and Ben updates

Jace had his surgical procedure done on Thursday. He did well, and came out of anesthesia so much easier this time than in the past so that was great as well. She checked out the esophogus, stomach, and small intestines. All looked good, and she took tons of biopsy's from each area. We will obviously not have those results for a few days. His valve is finally closing on it's own so that is also very good as well, as at his last testing it wasn't. She thinks we are dealing with CVS. She is keeping him on his prevacid, but lowering it to once a day, and she is adding another new medicine to help with the CVS. Before starting his new med, he needed to have an EKG and we go those results back late Friday, and they were good. So we will start the new med tomorrow. We went down to the 1 prevacid a day and the throwing up has already restarted so we are hoping the new med will situate quickly.

Benjamin has been a disaster. He has gotten a hold of crayons, pencils, pens, emilys nail polish, lipstick, and a glue stick and completely demolished his bedroom and 2 bathrooms. He completely covered the bathrooms and 1 of Ari's toys in water. We can't figure out where he keeps finding all of these things and what to do about it. It's a constantly struggle with him and he's constantly getting everything and destroying everyone's things. Then last night he pushed Ariana down the stairs and turned the lights off on her. She of course wasn't thrilled. Today Bob and I decided we needed to AGAIN rearrange the bedrooms so Ben would have minimal things and was where he could be supervised constantly. We were upstairs getting a few things done and kept smelling something burning. We all started roaming around the house trying to figure out what was going on. Ben had taken a huge wool pom-pom and had thrown it on the 100 watt light bulb underneath the lamp shade. It of course was on fire. Luckily we found it before it was able to spread any more to the entire rest of the living room. We are going to have to be calling EVERY one of Ben's workers tomorrow, as we need help. We've got to figure out what to do. I can't keep following him around constantly, and having him hurt people and potential endanger the entire household. I'm just losing my mind dealing with the constant problems with Ben, and so is everyone else in the household.

Tuesday, November 3, 2009

Such a busy week

This week is HUGE. We have sooo many major things going on this week. It's a bit overwhelming.
Ariana has transition meeting tomorrow. This is where we will begin discussing her upcoming 3rd birthday. She will begin full evaluations and testing again at the end of this month to determine specifics, but we will begin discussing what we all want written in her 1st IEP. They know for sure her diagnosis of Sensory Integration Disorder will stay, and we will continue receiving speech and physical/occupational therapy. We are hoping to be able to get her into a preschool setting 2 days a week and obviously her additional therapies. I'm not looking forward to going thru the entire IEP writing process again as it is exhausting and frustrating. Hopefully it will go smoothly.
Jace has his surgery schedualed for Thursday morning. We check into the outpatient surgery center at St Francis at 9am. He's not really looking forward to it obviously. They will do all of his biopsies so we can again verify that no cancerous cells are showing up in the esophogus. In addition she is going to be checking and testing all the valves as she's considering changing his diagnosis now from GERD to CVS. So we are looking forward to the results and hopefully getting situated on some new meds that might work a bit better. Right now we are on limited dairy of all sorts again and that definitely seems to help but the stomach aches and headaches definitely haven't gone away. After dealing with this for 5 years he's pretty easy going about it all, but the older he gets some parts of it do definitely bother him way more than they used to. He will be missing TKD on thursday and isn't happy about that. He's loving it and it's kept him super busy! We will definitely be continuing it next round!
Benjamin is doing pretty good. He like always has his days. He's doing pretty well at school and really getting into the groove a bit more this year. He's working a bit more on his academics and lots on his social. They've been doing alot more in classroom speech times to really push him to talk and interact with the other kids. he's still using a full TEACH scheduale at school on the door and she's now doing a portable TEACH scheduale for centers and such. We are hoping to switch over to the portable scheduale completely by next year as we think this will make the kindergarten transition easier. We are still dealing with alot of temper issues and obsessions with him at home which are beyond exhausting. Right now the biggest obsession is hugs and kisses for the kids when people leave. This usually takes 15 to 30 minutes depending on his mood because he must see everyone give each of his siblings both a hug and kiss, which usually takes multiple tries. He also does this randomly if we take a shower, or go to the bathroom, or step outside to take out a bag of trash. Many times when company leaves he will continue screaming for 30 plus minutes claiming he didn't see Ari get a kiss, or something like that. It's exhausting and makes goodbyes very long. We are hoping he settles a bit before the new baby. He is going to be going for another round of full testing the end of November. He will be getting fully evaluated again and doing all the IQ testing etc. This is hopefully the last process for his social security application to be accepted.
Emily is doing well. She's incredibly busy with school. The farther into the year the busier she gets. She's doing her 1st little research project right now, and that's been using up alot of her free time. She's enjoying the work and the reading though so that is good. Her battle of the books program ends in a few weeks and she's definitely not thrilled about that part. Bob has been teaching her to knit so that will give her another new hobby to pick up until her next school program begins, not that she will stop reading!
Bob and I are doing well. Just trying to keep up with the kids and life. I'm super pregnant and exhausted and not sleeping that well. So that obviously doesn't help. More updates soon, especially after Jace's surgery!

Friday, October 30, 2009

33 weeks pregnant!

Today is 33 weeks already. Time is flying by so quickly. This has definitely been my fastest pregnancy and isn't slowing down. Hopefully the end stays that way. I haven't taken a picture since 21 weeks I think it is, so I had Bob take one this morning. So here it is! Since my surgery and the fact that little man is upside down my belly doesn't look super big, but I'm measuring alot higher than normal for this point. If that makes sense.

Wednesday, October 28, 2009

A Bit Grouchy

The past few days I've honestly been a bit grumpy. I went from a planned homebirth, to a possible planned induction at a hospital, to a possible planned c-section. I feel like everything I wanted has been taken away. And to top it all off, we have no idea what is going on with Mr Eli and what he will need immediately after birth. They can't completely test his kidneys until he's actually here, so it leaves everything up in the air right now. We can only wait. I'm not good at waiting and I'm scared about what is going on with my son. I don't like not knowing what is going on. So I've been in a bit of a grouchy funk. Then I feel guilty for feeling that way. I know there is nothing I can do about it, but it doesn't change how I feel. I need to grieve and move on. Wow that sounds a bit cold though, and that's not how I mean it. I hope it makes sense to someone. I just need to snap out of this and do whatever I can to get thru the end of this pregnancy.

The last 24 hours Mr Eli has been SUPER active, moving around, making my stomach form into weird shapes. I'm not sure if he's maybe attempting to get himself flipped back around or if he's just goofing off. I'm keeping my fingers crossed but definitely trying not to get my hopes up. He's sitting super goofy at the moment and my hips and lower back have been horrible, to the point where I've spent alot of time sitting on the couch. Hopefully that will adjust as he adjusts and situates better.
More info to come as we get more info! Thank you to everyone for all the encouraging words!

Monday, October 26, 2009

Emily's Bday Party, Night of the Living Zoo, Ultrasound

Emily's 9th birthday party was yesterday. We did crafts and they all played outside and had a great time. Cake and presents followed. So got alot of great stuff and she's super excited.
Then we ate a quick dinner and got dressed in Halloween Costumes and headed to Night of the Living Zoo. Right as the gates were opening it began to drizzle. It was beyond cold, BUT the kids did have fun.
Today was my ultrasound and next OB appt. 1 good, 2 not good from the ultrasound. Mr Eli did gain weight. 4 weeks ago he was 2lbs 8oz and was less than 10th percentile. Today he was 3lbs 11oz and was 34th percentile. So the weight gain was much better. His left kidney looked good. His right kidney was worse. His kidney should measure 0.7, but 4 weeks ago it was 1.45, and today it was 1.81. So it's actually getting larger not smaller like it's supposed to. The amniotic fluid level is still good which means either the right kidney is functioning enough, or the left is doing a good enough job working for both. The other new piece of news is Eli is now complete breech. Hopefully he will turn, but obviously no guarantees. We have no clue why he turned, it could be the scar tissue from my surgery or who knows what else. Hopefully he turns before his fluid levels potentially drop or he in general gets to big. His heartrate was good, and he actually scored very on the basic testing they do and things they look at during an ultrasound. I will see my OB again in 2 weeks and then in 4 weeks I will have another ultrasound. That will put the next one at 36 weeks. So now we have the kidney and the breech to deal with on making decisions on what happens. We are trying to stay positive, but are completely aware that at this point we will for sure be having a hospital birth.
We will keep everyone updated as we know more.
Below are a few pics from Emily's party and before we left for the zoo! Enjoy!

Saturday, October 24, 2009

HairCut Day!!

The kids were horribly in need of haircuts so I took all 4 of them out and got it done all at once. Ari finally got her 1st big girl haircut. HOLY COW. She looks so big. She was all excited and I almost cried when I saw the 1st cut. I will admit it looks so much better. She still has such baby fine thin hair, that the longer it got the scragglier it looked. So it does look amazing, but WOW. Here are the photos of each of them!
Emily barely got a trim as she refuses to cut her hair right now. She also wasn't thrilled about having a photo taken at all. Go figure. :)
After haircuts, the kids went and played outside with my dad while I ran my grocery shopping. They are greatly enjoying this weather.
Now I just need to get some housework done and bake a cake. Tomorrow is Emily's birthday party and I have so much to get done before then!
More pictures to come tomorrow after Emily's party and then we are off to the Zoo for Night of the Living Zoo! A busy fun filled weekend!

Friday, October 23, 2009

It's been a busy month for us! We moved at the end of September into our own place finally!!! It's been great having our own space again and getting all of my things back. The kids are doing great. We found a place close by so we didn't have to switch schools, buses, nothing. So that has definitely helped the kids as well.
I'm 32 weeks pregnant now. We had an ultrasound almost 4 weeks ago, and they found potential kidney problems and growth problems. We have another ultrasound monday to get a better idea of what is going on. The pregnancy is going so fast though, and I can't believe that we are so close to the end.
Emily has already finished off 11 our of 64 books for her Battle of the Books and is doing great! She's loving it. Jace is doing an amazing job with Tae Kwon Do, and is really enjoying having something to focus his energy on. Benjamin is COMPLETELY potty trained and I'm loving that! :) I will be starting working with Ari on potty training next week. Ari is doing well with therapy and has her transition meeting coming up next month.
Jace will be having another surgical procedure on November 5th. They are going to do another scope and biopsies. They will check his valve and get some more detailed information. The doctor is thinking that we are dealing with something completely different than what we had originally thought. If this is the case then we will have to completely switch treatments. So hoping to have more info soon!
Last weekend we spent some much needed family time together. We went to the pumpkin patch, then the big kids carved their 1st pumpkins, and the little 2 did their Mr. Potato Head pumpkins. Everyone had a great time!
Here are some photos from our weekend!