Sunday, February 28, 2010

Individual Updates

Today I'll update backwards! :)
Bob~ He's doing well. Busy! Health wise he is good. Fully recovered, and goes back to the doc in 3 months to get his next testing schedualed. We were out shopping at a local retail store the other day and got to chatting with the assistant manager. He all but offered Bob a job right then and there. It was funny. When we moved here a year ago we would have jumped on an offer like that, but none came, and now they do. go figure. :) I'm sure Bob found it flattering though, and was briefly tempted by the idea of getting back into retail management; notice I said briefly though! :) He also bought his 1st suit! :) Looks super handsome! We are going to a super dressy event and he for once gets to dress up as well!

Me~ I'm ok. Busy, as always. Taking care of the kids and working on packing. I hate packing but we are so excited to finally be getting into a larger home with full working electricity and plumbing and such! I went out this last Thursday evening completely by myself. It was really nice! I got a bit of crocheting done, and alot of nice conversation with friends! I bought a beautiful dress for above named dressy event, and now I just need to go jewelry shopping! :)

Emily~ She's doing well. Getting super sick of her cast. It's rubbing on her pinky and making her pretty miserable. May need to call the doc and see what they can do. She has state testing coming up this coming week. That will definitely keep her busy at school. She has chosen to be baptised and will be in mid-March. She's pretty excited about that.

Jace~ He's doing well. Staying busy with school, and tutoring 2 days a week, and TKD. His reading has really expanded and he can read whole books with little help. We've been really drilling on his spelling words and he's doing sooo much better! he's hoping to get a 100% on the test he took last Friday, so then he gets $1! He also has chosen to be baptised and will be at the same time as Emily.

Benjamin~ He's Ben. He's doing well at school and still enjoys it. We wil be having his trasition meetings coming up in April. He's still a mess. Constantly getting into everything and being as destructive as could be. No matter how much we try to keep everything away he seems to still find things. It's a constant struggle. We spend all day chasing him around and keeping track of what he's doing.

Ariana~ She's doing good as well. She's starting to learn her ABC's and 123's. She also loves singing and dancing and spends alot of time doing that! :) She will be starting school soon hopefully and we think she will really enjoy that! She has begun to copy Benjamin a bit to much, so we really have to keep an eye on that.

Eli~ He's doing pretty good. Seems to be stuck on his weight gain. He doesn't seem ready to up his night time feedings though. Still really fussy during the day hours, and we spend alot of time walking him around the house. We are wondering if he's teething as he has a tiny white bump on the bottom gums. We keep forgetting that he'll be 3 months old tomorrow. It still seems like he's a tiny little newborn. Come evening he's super sleepy and hard to wake up. Trying to keep his feeding balanced thru-out the day isn't always easy.

This week will be a busy week. Eli will hopefully be getting situated with his permanent nurse. He also has OT, and he sees the audiologist this week. We have a few school appts, and obviously moving. We are super excited! We have hired movers this time to keep things going smoothly and to get it done quickly. Also at the end of the week Brian is supposed to be coming to visit with the children, so we will see how that goes.

More updates soon!

Saturday, February 27, 2010

Still here!

Sorry we are so behind on updates. it's been a busy few days. we have spent Friday and Saturday 100% together as a family. We ran errands, we had a family indoor picnic and movie night, we went out to eat, we spent time outdoors at the park, and we had dinner with my parents. We haven't been on the computer but for a few minutes! I promise to get a full blog post up tomorrow, but just wanted to check in really fast and let everyone know that we are ok!

Wednesday, February 24, 2010

Eli and his Mickey!

Mr Eli got his mickey put in yesterday. So far it is definitely easier, just trying to get used to using it! here are a few pictures of him, his mickey, his incision and all of that!

Tuesday, February 23, 2010

Surgeon Updating and Reflection

Mr Eli had his check-in with his surgeon this afternoon. She took out of his GTube and put in the Mickey. Then she had me do it to make sure I knew how. It was honestly really spooky when she took the GTube out and I cringed. I was super scared to put the Mickey in but I was able to do it. It is soooo much smaller. Now to just get used to it and learn all the little tricks to using it. We were also able to see Eli's incision for the 1st time. Definitely bigger than laproscopically. The poor little man will definitely have some scars when he's older. His scale came in yesterday and we weighed him this morning. He weighed in at a super huge 8lbs 7.4oz!!!! So a definite gain! He's been a bit fussy this afternoon/evening probably from having his stomach messed with and all of that. Guessing a bit sore.

This morning Bob and I headed to our favorite place, Healing Waters, for a couples massage. It was sooo nice! We each had a 1 hr massage, then relaxed in the relaxation room and all of that. It was super nice!!! Many thanks to JenJen for watching Ben and Ari! :)

This evening our neighbors and their kids brought us dinner over. And I don't just mean a simple dinner. I mean WOW. Homemade potato soup, bread bowls, bacon, cheese, salad, dressing, etc.. Then since they knew we missed Ari's birthday they brought over birthday cake, ice cream, candles, party balloons, noise makers, filled pinata, birthday present, plates, napkins, silverware, etc.... We were in awe. No words could express to them how thankful we are to have people like them in our lives!!!
This came just after a friend this morning posted something that I'd been thinking about alot lately. Bob and I have spent many a conversation discussing how we've learned over these last 5 months (2 at the end of pregnancy as we were learning that Eli was sick, and the 3 since he's born born) who our friends truely are. There have been many people who have stepped up and been amazing helps, friends, and strong support systems, and then there have been some who we would have thought would but didn't/haven't for whatever reason or another. We've been sooo blessed to have the people in our lives that we do, and that we are even still discovering each and every day. To all of you out there, be it our "internet friends" our local friends and family, and our long distance friends and family we love all of you so very much. You all are part of the reason that we are able to keep doing this each and every day!!!

Sunday, February 21, 2010

Loooong Day

It's been a long day. Eli started crying early this morning and didn't really stop until around 5pm. I have no clue what was going on. He nursed TONS and was held constantly but nothing seemed to help. He finally crashed out. Since he had nursed 8 times today, I let him go 4 hours till I forced him awake for his next feeding. He was resting so peacefully. Hopefully tomorrow is a better day for him. I've been pumping away, but still haven't pumped enough today to make it thru 1 night. Very frustrating. A friend came over today and helped me order some Goat's Rue and brought me some mothers milk tea. Hopefully these 2 additions will bring me some changes. Tomorrow Eli's nurse will be here for 6 hours, so I'm hoping to get a few things done!

The older 2 spent most of their afternoons downstairs. Jace playing nintendo and watching movies on his Tv. Emily has discovered how to watch movies instantly on her laptop with our netflix and had a great time with that! Benjamin and Ariana both amazingly fell asleep and took decent naps. I was shocked! After they woke up they headed downstairs and watched TV with the older 2. It was incredibly nice! I wish they would be so good more often. When I put Benjamin to bed I cuddled my cheek up against his and told him thank you for being such a good boy this afternoon/evening. I'm not sure if he really gets what I mean, but just in case I wanted to make sure he knows that I noticed! We are going to be getting into our family doc with Ben here soon, to find out what to do about his destructive and self harming behaviors. I'm hoping to get some answers.

The last of our news is we are moving. We've been knowing this was coming. The rental we are in is a disaster. The heating and electrical have always been an issue, but with Eli now it's even worse. The electrical outlets spark and just completely cut off randomly all the time. His feeding pump gets turned off in the middle of the night. We can't get the house to a warm temp. The landlord refuses to fix it. It's a problem that we can no longer deal with. We found a place that meets our needs perfectly. 1 year old home, 5 bedroom, 3 bath, 3 car garage, large yard, full finished basement with a large family room! We get the keys on March 6th and will be moving in around the 15th. We are super excited!

This week will bring lots of busy stuff. Eli's scale should be in, he gets his Mickey on Tuesday, getting a full nursing staff(hopefully), beginning to pack, continuing to deal with the school issue from last week, and getting Ben into the doctor! As long as the typical TKD twice, tutoring twice, and all that fun stuff! :) Updates as they come!

Friday, February 19, 2010

Friday evening update

We've had some interesting school experiences this week. First Emily came home from school yesterday crying and it took a bit to figure out what was going on. Apparently 18 kids were causing trouble, and 5 were not. (Emily was one of the 5 not.) The teacher had finally had enough and started yelling at them, telling them that she now hates teaching, and that it's the kids fault for ruining it for her. She said she refuses to go home looking like crap because of them. She wouldn't teach them because no one was listening. I called to question and the teacher said it was the worst day of her life and that Emily wasn't the problem. Not an acceptable answer. So of course Emily didn't want to go to school today and listen to her teacher potentially yell. Bob called and the principal is "looking into it". We are not happy. This year hasn't brought good luck with the school. Next year things will have to change.

Jace is doing well. He's been pretty clingy and lovey the last day or two. I'm thinking it's because they've been gone so much, and he's just trying to get resituated. He's always been a bit of a mommas boy! :)

Benjamin is an absolute disaster. He is constantly getting into everything and getting himself or someone else hurt. This evening he some how found a stamp pad and stamps and covered Ariana's walls with ink. His class hosted a parents night last night and he and I went together. It was The Very Hungry Caterpillar. He was in a mood all night and his teacher couldn't even get him to sit down and focus.

Ariana is doing well. They are still trying to get all of her school paperwork done. Apparently there was a water main break and it flooded out the administration area. So there has been some delays. They are hoping to get everything finished up next week. Until then she's still home full time with me!

Elias is doing pretty good. He's doing well with his night time feedings and is still at 33cc/hr for 8 hours each night. He's doing pretty good during the day. He took 2-2oz bottles today for his nurse without choking, so that was super nice. I'm nursing during the day and still pumping all the time trying to keep up. He's been pretty sleepy again lately and that's a bit of a concern. Today he was pretty fussy if set down, so was held alot. He spent a bit of the late morning/early afternoon cuddled up with his nurse. His Mickey's came yesterday and we are super excited to get it put in on Tuesday. Ari and I went shopping today and found a few pieces of clothing that Eli can wear. He needs newborn sized sleepers with buttons only, so we can have easy access to his GTube but he can't. Not easy to find.

Bob and I are pretty good. It's just doing everything we can to make it a day at a time. We don't sleep enough, eat enough and consistently, and never seem to have a few quiet moments together. But other than that same old same old.

more updates over the weekend.

Wednesday, February 17, 2010

Wednesday Afternoon Update

Sorry for being behind on updating. Yesterday was Eli's 1st day with his respite nurse! She was here for 6 hours! Bob and I ran errands, did some shopping, and even went out to lunch together. It was oh so amazing. I love Eli to death, and love every moment I get to spend with him, but this was beyond needed. I never knew life could be so stressful and hectic, and such. Any parent struggling with a sick child gets such a HUGE amount of respect from me...not that I had respected them before but HOLY COW. You don't understand it until you are living it. WOW. Eli did well with the nurse, and she with him. Eli will have 4 hours today, 6 hours tomorrow, they are working on Saturday (6 hours) and then Sunday no nurse. Starting on Monday he will start with his permanent nurse. 1 of their nurses wanted to pick up ALL of Eli's hours! Apparently this is not normal and we are incredibly lucky! She will be with Eli 5 days a week(2 days early hours, 3 days late hours0 and then every other Saturday(all day), with Sundays always off! We get to meet her for a bit on Friday and can't wait! We upped Eli's night feeding from 30cc/hr to 35cc/hr. He has done well so far, but hasn't been as hungry in the AM hours. So it looks like it will be slow going to get up to the 50cc/hr at night time. He has his continuous feeds for 8 hours each night and then nurses during the day time. He has done well with nursing so far and we haven't had to finish any of his feeds up with the GTube. So I've been very happy about that. My biggest struggle is pumping. I pump and pump and pump and I can hardly get anything. I'm currently taking Fenugreek, milk thistle, eating oatmeal, drinking lots of water, and pumping often. I'm hoping it increases soon, but so far no. Also today Eli had his therapy with Rainbows. She worked a bit with his legs and we discussed his startle reflex, and how it's increased since his surgery. She gave us some tips to try, and we will do some more work once he gets his GTube changed over to his Mickey!

In other household news. The older 2 are doing well. Benjamin is a disaster as always. Last night he threw the light sabor down the stairs at Ariana and it busted her lip completely open in 2 places. She was obviously VERY unhappy, blood everywhere, and now a very swollen bruised lip. We've got to figure out what to do about Benjamin, because so far nothing is working. I think I will be schedualing an appointment with our Pediatrician to see what her suggestions are.
Other than that nothing much new. Just trying to make it thru each day.

Monday, February 15, 2010

Cast, Crying, Waiver, Valentine's, and Birthday

Emily got her cast today. She had wanted turquoise but they were out, so she picked pink. And when I say pink I mean glow in the dark neon HOLY COW pink! She will have it on for 4 weeks, then back to the doc for xrays and then if all looks good she'll be back in her splint for 2 more weeks. The family has already signed it and she's pretty excited about that!

Eli spent most of the night and day crying. We aren't sure what's going on with him or what to do about it. He had been up since 3am this morning and finally crashed out this evening from sheer exhaustion. We also had his TA waiver mtg with the RN in charge of schedualing his nursing care. We were approved for 213 hours a month, but right now won't be using that much. We've set up a nice scheduale that we will try out for the rest of this month and see how it goes and make adjustments from there. Our nurse starts tomorrow and Bob and I are looking forward to some time away. We are going to go do some errands and grab a lunch out together, maybe even catch a movie.

This evening we went over to my parents and celebrated Valentine's Day and Ari's 3rd birthday! Everyone had fun and it was great to see our kids! Since everyone seems to finally be better, they are going to move back home tomorrow after school. They've been gone 9 days, not quite as long as our last hospital stay, but definitely long enough. (I'm sure as my mom is reading this she's nodding her head in agreement. lol) Back to getting situated in life with all 7 of us under 1 roof. For about 1 1/2 months anyway.

Sunday, February 14, 2010

Pain for Mr Eli

Mr eli has not had a good last 24 hours. He cried a large portion of yesterday evening, most of the night, and on and off all day today. We finally called his surgeon and she took us thru an assessment of everything. She thinks that he's having some pain, so had us start him on some pain meds. We are going to see how that goes for him and go from there. After the 1st dose he was able to rest some, and then woke up crying again. Gave him his 2nd dose and he's trying to rest now. it's so hard to see him in pain.
Emily is doing well. She said that stuf is hard to do without her right arm and she needed a bit of help with a few things. It'll take some time for her to figure it out!
More updates soon!

Saturday, February 13, 2010

Home AGAIN....

Well we were home for less than 2 hours. eli and I were hanging out and my cell phone rings...It's my dad. emily was outside skating and fell and he thought she broke her arm. Sure enough she did. She fractured the bone right under her wrist. she is in a splint for a few days until the swelling goes down and will get a cast on tuesday. My life is never ending....seriously. I sooo need a break.


We are home!!!! YIPPPPEEEEEEEEEE!!!!!!!!!! I've never been so happy to be home. Now to figure out our scheduale and our life and how to balance it all and make it work. I need to buy a storage cabinet I think so we have somewhere to keep all of his tubes and medical supplies and such. Right now he has his GTube and we will get the Mickey a week from Monday. We can't wait for the Mickey as it's so much easier. We keep hearing how much we'll love it. He's had his 1st nursing since we've been home and he's been pretty grumpy. I just vented his tube for the 1st time by myself and he seems a little calmer, so hopefully we are figuring this out!
I promise to post more with photos tonight once we are situated and unpacked!

We've been asked what we need and up till now we weren't quite sure. The biggest thing that would be of help right now would be meals and some company! Being stuck at home with Mr Eli by myself gets pretty lonely pretty fast!
thanks everyone!

Friday, February 12, 2010

Friday morning update

First weights. Monday when we checked in Eli weighed 8lbs 3oz, this morning he weighed 7lbs 13oz. So we lost 6 oz so far. hopefully we can start getting that back soon and quickly.
Eli is off oxygen, and has been since yesterday morning. He's still Q4 on breathing treatments and CPAT and he's doing well with both of those. He was on continuous GTube drip last night, 20cc every hour from 9pm to 5m. Then today they are going to let him nurse every 3 hours for 15 minutes. If he doesn't nurse for 15 minutes then he'll get that feeding in is GTube. He got his first nursing at 8am and he was super excited to get to actually nurse. He did really well and didn't need any GTube makeup.
Lastly we are up on the floor. We got up here late yesterday afternoon/early evening. The move up was a disaster and they didn't complete it and get organized until 9:30pm last night. I was beyond frustrated.
Doc rounds haven't begun yet this morning, they are a bit slower upstairs. Will update when we know more there.

In other Eli news. He was approved for the TA waiver, so that will give him 213 hours a month of Nurse/Respite. He was also approved for Social Security. And lastly Dr Murphy in KC, got all the paperwork and such and Eli will check into Children's Mercy the morning of April 5th for scans, profiles, and testing. Fun stuff. We found out all of these things this week.

Our older 4. It's been a LONG FUN week for my mom. Apparently this week was the week my children would get the stomach bug. Emily and Jace had it early in the week, Ari started last night, now Ben is who's left. Hopefully he won't get it. Luckily it seems to be quick moving, not even lasting 24 hours, and pretty mild.

Not much else. Hanging out at the hospital. Fun stuff. Will get some new pictures up of Mr Eli later today with updates after rounds.

Thursday, February 11, 2010

Thursday Morning update

Eli is seeing some improvement. The little dude keeps ripping off his oxygen so they are letting him go without this morning and he's doing well. his respirations are a bit high from not having the forced air, but not enough that they are concerned yet. Going to watch him and see if he starts getting tired from not having it. He's super hungry all of a sudden and has been really fussy. His surgeon came in and since he's tolerted the 10cc an hour in his GTube she is going to let him try a 1oz bottle for 10minutes. What's not taken will be put in his GTube. He will get to try this every 3 hours until 8pm. Then he'll be on 20cc and hour all night from 8p to 8a. If he does well with all of this today we get to try and nurse tomorrow!!!!!!! YIPPPPEEEE!!! They are also changing his breathing treatments from Q2 to Q4. He has to be on Q4 to be able to go up to the regular peds floor. I sooo miss holding him. I've held him 1 time for about 20 minutes since his surgery monday morning! He will get his Mickey about 2 weeks after surgery and I can't wait for that! The GTube makes me nervous because it's so big and sticks out from his stomach so far. We will learn how to care for both over the next few days.
Eli is crying. more updates later.

Wednesday, February 10, 2010

Wednesday Afternoon Update

Last night Eli started running a 102 fever. It's down now but they are definitely keeping an eye. His heart rate kept doing it's goofy stuff as well.
This morning they decided to start weaning him off the special CPAP machine. He is now off of it and on nose canula oxygen with some special solution to help keep things moist. He's getting a bit tired breathing and it's a bit more labored but not as bad as yesterday. He's also wheezing a bit, but the treatments and tapping seem to help with that. He gets those every 2 hours. They started 10cc's an hour into his GTube and so far he's doing ok, but that was just started so we won't know much until later tonight.
They did the EKG and an ECHO today as well. The pediatric cardiologist came in and apparently Eli has 2 holes in his heart. These usually close up during pregnancy but his didn't. They will recheck in 3 months to see if they have closed on their own.
Right now it's a wait and see game. He's resting fairly comfortably so that's a good thing. I will update more as we know!

Tuesday, February 9, 2010

tuesday evening update.

It's definitely been a backwards day. Eli is on the pushed oxygen and is getting 45%. He is still on the 3 pain killers as well. His BP and heartrate and respirations were way high and now they are way low. The docs have all been notified and have decided to meet tomorrow for talks and testing..and echo and we don't know what else yet. He's finally resting comfortably at the moment, and has been since his last dose of morphine when the finally got him situated on his left he's used to sleeping. hoping for an uneventful night and who knows what tomorrow will bring. more updates then.

a quick thank you to michelle for the dinner! sooo yummy to actually get to eat a warm full meal!

Pics of Mr Eli

Here are 2 pictures of my little man today. His oxygen is what is on his head and nose, and the long tube attatched to a bottle nipple is his GTube. They use a bottle nipple to stabilize it against his skin so it doesn't get kinked or pulled on.
The insicision from his fundo is on his side and above the Gtube so it isn't visible!

Mid-Morning Update

It's already been a long day and it's only 11. They did another chest xray and there was still quite a bit of fluid in the lung and around his heart. He's in quite a bit of pain and having alot of trouble breathing. They have him still on the tylenol, back on the morphine and now on toradol. (he can only be on 1/4 dose of it because it causes major kidney problems.) They have also put him on a special machine (SIPAP) that is constantly pushing oxygen into his lungs to help hold them open, therefore making it easier for him to breath. They are running labs to try and get more information with what is going on with his lungs. He will be in PICU for multiple more days (nobody knows for sure) and then we'll go upstairs to the regular peds floor. Still nothing in the GTube as they want to wait to get his breathing under control before starting feeds. The good news is this is giving me time to pump and I'm up to 22 ounces in the freezer here!!!! Will update as we know more.

Rough Night

Mr Eli had a bit of a rough night. He's been in quite a bit of pain and they've had to do some pain meds. Also early in the evening he wouldn't stop screaming and flipping around. She gave him morphine and he kept freaking out. She looked at his foot and his entire foot was purple and his whole leg was swelled 3 times his normal size. Something went wrong with the IV and they had the bandage on too tight and it was causing major troubles and discomfort. The moment she unwrapped his foot and took the IV out he quite screaming. As the night has gone on his breathing has gotten alot worse, and they had to turn his oxygen up and do breathing treatments. The last time we got up with him he was fussing, the nurse ran out to get something and as i touched him I realized his IV cord was around his neck. i could only get 1 finger under it and Bob had to lift Eli to free it. The nurse is who had gotten up with him at his last awake time. We asked for a doctor between the breathing and the frustration with our nurses not doing their job and she said no need to page one would be in in a few hours. We are VERY unhappy and will be having a MAJOR word with our doctor. We want out of PICU and onto the peds floor where we actually trust the nurses with our sons life.
more updates thru out the day as we get them.

Monday, February 8, 2010

Out of Surgery...In PICU

Eli is out of surgery. His surgery went well, but like his doctor had predicted he wasn't able to wake up and come off the ventilator. They moved him straight over to PICU and we were able to see him for like 30 seconds as they made the transfer. He had tubes, IV's, ventilator and at that point they were bagging him. It was definitely scary.
He is now in the PICU still hooked up to everything. They did a chest xray to check tube placement and apparently he has fluid in his lung around his heart. She says some might be from the fluid from surgery but it looks like he probably had some pneumonia when he was admitted. Not being able to take his prilosec has caused him to become super mucusy so he's choking and gagging on that. Someone seems to be in here constantly messing with the ventilator or suctioning him. His heartrate is pretty high and he's struggling to keep it down. We can touch the top of his head and that's it. We can't hold him, cuddle up next to him, nothing.
The doc told us to expect this to be an uphill battle for him with everything he's got going on and honestly that isn't what I wanted to hear. He will flutter his eyes open for a few but not much, and then they are right back closed, he's not really waking up, although they wish he would wake up.

Below are a few pictures of Mr Eli. You can see all the tubes and monitors and such. one large monitor is whited out because apparently it's a copyright issue to take photo with it in it! :)

Heading to the hospital soon

we are up. eli is up. i just finished nursing him for the last time before his surgeries. who knows when i will be able to feed him again as he has to be extubated and all that good stuff first. i'm scared about that. i'm scared about soooo many things. we will be headed to the hospital soon. one of us will update as we know more throughout the day.
please pray for my little man.
thank you. love to all.

Sunday, February 7, 2010

Quick update and photos!!!

I'm all packed. the older 4 kids are gone. Its quiet. strangely quiet. gives my mind way to much time to think about all of the "what ifs". Eli is resting fairly peacefully tonight...thank heavens.
we will update tomorrow as quickly as possible. Check in at 7am, surgery at 10am.
Thank you to everyone for all the prayers and texts and emails and encouragment. We need it and appreciated it!
Enjoy the photos

Here are a few recent photos of my little man. Here he is last week hanging out in his papasan.

Here is my little man hanging out in his swing the night before surgery.

Here are some photos of the lined knitting bag that I just finished up. I made it so I could carry 1 knit or crochet project with me when we went to all of Eli's doc appts and such! This hospital stay will be my 1st time to get to try it out!

Saturday, February 6, 2010

saturday evening update

We are still here. Its just been a long short few days. I've been trying to get everything quickly situated here at home. House cleaned, laundry done, packed, etc... So far I've got the house cleaned and the laundry almost finished. Tomorrow i've gotta rush and get everyone packed.
Eli has been fussy the last few days, and throwing up a ton. He's definitely kept me busy. The kids are good, getting ready to move back to their grandparents tomorrow.
bob and i are exhausted. physically, mentally, and emotionally. i'm not looking forward to monday at all and its coming soooo fast. i'm so scared for mr eli.
everyone keeps telling us how strong we are and how amazing we are doing and how organized it all is. i sooo don't feel like that. i feel like i'm falling apart inside. i am constantly trying to hold tears back and i just want to curl up on the floor of my closet and turn off the lights and close the doors. i want to scream, scream like i never thought possible.
i will try and get some pictures up tomorrow, and another quick update.
love to all.

Thursday, February 4, 2010

Home from the surgeon

Well we are home from the surgeon. It's a bit worse than expected. She said he's horribly malnourished and said it absolutely breaks her heart when she sees a baby this sick. She said there is no question that these 2 surgeries need to be done ASAP. He will be admitted to St Francis on Monday morning. She said he's so tiny she won't be able to do the surgeries laproscopically, so she will have to completely cut him open. She also said that with being so tiny and so sick that she has a feeling that once he's under anesthesia his body is going to like it a bit to much; as it won't have to work so hard just to simply maintain. She is expecting it to be harder to extubate him and that he will probably be intubated for a few days. He will be in PICU until he's stable enough to go out to the pediatric floor. We were told to expect 4 to 7 days minimum for his stay. Depends on how his body recovers. I'm scared. I'm really scared. My poor little baby is going thru hell and there is nothing I can do.

Wednesday, February 3, 2010

Wednesday Check In

We are still here. It's been a busy few days. The older 2 have had half days because of parent/teacher conferences. So we had those yesterday. It all went well. Alot of information that we are sorting thru to make some big decisions.
Eli has had some rough days. He's been choking and throwing up even more. Tonight he screamed for over 5 hours, clearly uncomfy and there was nothing I could figure out to make him feel any better. He's finally asleep on the couch next to me and of course it's technically time for his last feeding. I'm letting him go a bit as he's just finally sleeping and his stomach appears to be settled. He had Rainbows out today, OT and speech. They were great and gave us lots of useful information. A basic plan has been set in place for after his surgery and we are so greatful to be continually expanding our support team.
tomorrow is Eli's appt with Dr. Molik the surgeon so we will have more detailed info after that!
I'm exhausted. We aren't sleeping much, and I'm trying to constantly balance Eli's needs with the needs of the older 4. Eating, sleeping, downtime, everything is never a guarantee and I'm just dragging.
If anyone is bored feel free to text and set up a time to stop by. Company is always greatly appreciated!!!

Monday, February 1, 2010

Quick Update after Dr Z

Mr Eli had Dr Z (GI) this morning. He did gain some weight. 7lbs 12.5oz and 19 inches long. Still not enough. On top of that he's choking and throwing up with every feeding. She is hoping that Dr Mo (surgeon) will be able to get his surgery schedualed for Friday instead of waiting until next week. She is reccomending Nissen Fundoplication and the Gtube. He will be hospitalized for atleast 3 days and will be able to come home once he's eating and keeping food down, and most likely for him his weight will need to be going up, even just slightly. I'm soooo not looking forward to this. Luckily we love the nurses and will feel right at home! :)
more updates as we know them....