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Thursday, February 26, 2009

E. Clark Stewart Dec 10, 1923-Feb 26, 2009

Clark Stewart, Jess' maternal grandfather, was the most amazing man. I know that everyone says that about someone that just passed away but this man truly was the most amazing human being I've ever met. He was kind, strong, passionate, loving, embracing, accepting, generous, patient, and absolutely everything anyone could ever ask for in a husband, father, grandfather, great grandfather, brother, friend, or fellow human being. He was one of the most intelligent people that Jess has ever encountered and she wanted me to make sure I mentioned that very important quality. Clark Stewart passed away tonight at his home. The world will never be the same, but it is a much better place because he was in it for 85 years!

Easter Coral






We decided to go with Coral this year for the girls Easter outfits. I took some test shots today of their new outfits! I like to take every opportunity possible to snap a shot of our kiddos. There will be better pictures taken at Easter time but for now here are some shots of the outfits and the kids.

Going on the potty

Jess and I have talked about using Elimination Communication techniques with Delaney since before she was born. With the chaos of birth and then illness we had not really followed through with it...until today. We just decided since she kept her diaper clean for 4 hours that we'd try to put her on the potty. We went through the EC technique and she immediately started pooping and then peed and then pooped again! It was the funniest thing and she looked so proud of herself. She's not quite 6 weeks old and the kid was proud of herself for using the potty! And of course I got some pictures


Poopin on the potty! 5weeks 6days old!


So proud of herself...peein in the potty

In her little pink dress with black pants :) She didn't feel like smiling this morning.

Wednesday, February 25, 2009

Front Wrap Cross

Today we went to the pediatrician. She is retesting Peanut's liver function tests on Friday when she goes in for her hip ultrasound to make sure everything is going well with that. She seems to be feeling better today. I am also feeling better. I guess my temp broke in the middle of the night so that alone makes me feel better. Unless you've had a 102.5 degree temp as an adult you have NO idea how crappy you feel...regardless of nausea, vomiting, and headaches.

We went to the fabric store today to get the fabric I needed to make our Front Wrap Cross (aka homemade Moby). I made one, worked on how to wrap it correctly, and now Peanut LOVES being in it. I am able to do housework, walk around, and sit in my recliner with her. She's comfy and so am I.

We also talked to our Pediatrician today about delayed schedule for vaccinations. She does not agree with the delayed schedule because vaccines were formulated to work in "batches" therefore spreading them out makes them less effective. She was talking about how they have seen an increase in diseases that had long since disappeared because parents were choosing to decline vaccines or delay their administration. That was kind of scary. Although we have a LOT more to talk about regarding vaccines we have tentatively decided to do her scheduled batch of immunizations at her 2 month appointment and IF she has a reaction we will delay the rest of her vaccines. We are also talking about the Chicken Pox vaccine. We're not sold on it. Anyway I know that this is a HOT HOT HOT topic right now...and I want to emphasize that we are making decisions that are best for our family. Everyone has to make decisions that are best for their family.

Here are two pictures of the new wrap


Please ignore me in the picture...not a good picture at all!

Tuesday, February 24, 2009

Give me a break!!



I have felt kind of puney all day and then it HIT. I haven't had an appetite today so I haven't eat much at all. I took at 3 hour nap while D napped. I woke up, fed D, got her ready to put in her swing (because I started feeling REALLY bad and couldn't hold her), and had to run to thebathroom to throw my toenails up. I am now having every single of the of symptoms that D is/was having. I even have a temp of 101.2.

Jess asked the lactation consultant what I should do about the milk I'm pumping today and she said to feed her off the breast or fresh pumped milk today because my body will pump her body full of the antibodies she needs to fight off this virus. I guess it's my bodies way of saying..."Okay we've given you 12 days to fight this yourself and your not doing well enough so I'm getting sick to help you out!" I wish I could help her in any other way other than getting sick! Holy cow this virus sucks hinney!!!!!


My sick butt!


She loves being swaddled


She's found her tongue so it's hard to get a pick of her without her sticking it out



Little Miss Purple

Soakin in the tub


Nakey booty!


Covering up for modesty


Gotta cover up all the someday private parts


Soaking away


Trying to eat the water


Totally chillin...she moved herself down that far in the tub to be further in the water

Monday, February 23, 2009

New Day...New Challenges

A lot of people are asking if D is all better now that we are home...well the overwhelming answer is not so much. She threw up 3-4 times yesterday and every single one of her 7 diapers was extremely watery diarrhea. She is eating well which is the only reason we are not concerned about dehydration. She has not had a fever. We are making an appointment with our pediatrician for Wednesday or Thursday of this week to follow up from the hospital stay. If things haven't improved by then we will see what she thinks. Oh yeah and to answer another question that a lot of people keep asking...I am doing okay with the whole isolation thing. I left the house yesterday twice to pick up food since my mom sent me out with money. :) Thanks mom! Jess also left the house to go to the grocery store by herself. We sat down and ate three meals as a family at the table while Delaney stayed in our bedroom sleeping or swinging. We are attempting to resume life as usual. We have to miss Julia's 1st grade music program because I can't leave the house with D and Jess works. There are some things that do definitely suck about the situation but it is MUCH better than being in the hospital.

On to less depressing things...

I have found a wrap that I am going to try. Thanks Clark for the internet link. Jess and I are going to the fabric store on Wednesday to get me what I need. I will let everyone know how it turns out!

Jess signed us all up for March of Dimes walk today and got us all t-shirts. We are trying to find a onesie we like that has March of Dimes on it for Delaney so she can match all of us.

Jess also booked our trip to Mexico in August today! Woohoo!!!! Although the travel agent woman was a nightmare and totally did not understand that Delaney has two moms and NO DAD so I don't need to get something signed by the "father" so that I can travel with Delaney.

My aunt and uncle (who I haven't seen since I was a small small child or even spoken to since I was a small child) sent Delaney a very nice handmade blanket today. That was a total surprise but very nice!

Oh yeah and here are some pictures...

After 8 days of nothing but pink...I had to break out some of her blue items


Little miss prim and proper even crosses her legs to sleep


Wouldn't this inspire you to recycle!? Come on people start being smarter about waste!

Sunday, February 22, 2009

Wraps

With D still not feeling well she is quite clingy and fussy. She likes being held a LOT. Now I can't really go around holding her all day by myself while Jess is at work. When we are both home it's not bad.

*Don't get me wrong D does go down in the swing or crib but there are times where she is so cranky that nothing will do but holding her close*

I am wondering if there is a cheaper option to the Moby wrap. I am trying to find something of that sort. I want something that is comfortable for me to walk around the house and do housework as well as sit in my recliner without having to get her in and out of the thing. Also she's only 5 weeks old so it has to support her head.

Let me know! And if you have one that I could borrow or buy for cheap ($20 or less).

Pictures...


In our coming home outfit, these pictures are all jumbled up but I don't have the energy to get them in the right order.

New hat from Gramme


Sleepin in her other new hat from Gramme


Smiling under the blanket my mom (Gramme) brought her that was mine when I was a newborn and a hat Jess brought down from the NICU


That little Rainforest mobile thing is magical. Babies just get quiet and stare!


She stared at that thing for an hour when I first put it in there


D on the bed getting ready to leave for the downtown hospital


Being loaded up for our ambulance transport.

There is no place like home....

We are home. D is still not 100% better but we wanted to heal her at home and get our life back to normal so yesterday I asked the doctor if we could continue this regiment at home. We actually left the hospital still on isolation...to protect D more than anything else. So here at home we have some new rules.
1. She is restricted to our bedroom ... it has been deemed a "clean room"
2. The big girls will be in masks when/if they enter the room and will sanitize their hands when entering and leaving.
3. Jess must change clothes in another room after returning home from work.
4. The big girls must change their clothes after returning from school, basketball, soccer, church, or any other function where they have been around other children.
5. No visitors under the age of 15 allowed for 3 weeks.
6. She cannot leave the house for 2-3 weeks except to go to the doctor
7. We have to feed her in a sitting position no more than every 2.5 hours.
8. We have to burp her after every ounce.
9. She now takes zantac twice a day for GERD
10. She must remain in an upright position for at least half an hour after every feed.
11. She must sleep on as close to a 45 degree incline as possible...and be placed on her right side.
12. She cannot be jossled, swung, rocked, or bounced for an hour after each feed.
13. All adult visitors must sanitize their hands and we must use discretion as to whether they should hold her or not.
14. We have to keep track of diapers, vomiting, stomach cramping, and fever for the next 2-3 weeks.

We are kind of hunkered down in our house now to protect Peanut. The doctor told me that if I didn't think we could handle this that he would just keep her in the hospital until her immune system recovered. I told him that we would be vigilant and would follow his instructions. We'd rather be home on restrictions than stay in the hospital another couple of weeks. So I guess for all of you that are in our everyday face to face lives those are the rules. If you want to bring food or anything that's great just leave other children at home and make sure that you have no been in contact with sick people for at least 48 hours...preferably 72-96.
I will post pictures from the last few days here in a bit. Thank you so much for all of your prayers and concern. We greatly appreciated getting messages from you all and encouraging words. I know that Jess and I were at the end of our rope of patience and energy and those comments helped us push through.

Saturday, February 21, 2009

GOING HOME!!!!!!!!!!!!!!!!

The doctor just came in... liver function tests are going down. The doctor feels like we can manage this issue as an outpatient...following up through the GI Clinic. We get to go home when Jess gets off work tonight!

Day 8

So we are on day 8. I still have no internet access, but my mom is holding Delaney so I can post a quick update on the playroom computer. She had 1 vomitting episode yesterday morning but no vomit since then! She is still having diarrhea with every stool. She is more awake now and is a lot less fussy. We are finally on the mend I think. She started zantac yesterday and according to D it tastes REALLY darn bad. We don't know yet if it is helping. She had some liver function blood work drawn today and we should know the results in a few hours. Tomorrow morning we should know if there is anything baterial in her stool that may be causing this stuff. I HOPE we can go home tomorrow afternoon/Monday, but we cant really go home when we are still in isolation and she's still having diarrhea.

I miss the internet. I miss my house. I miss Julia and Charlotte. I miss Max and Joey (the dogs). I miss going outside. I miss having a well baby. As much as I miss all of those things I cannot bring myself to leave Delaney for more than a few minutes to walk down the hall or get food downstairs. I'm just not ready to leave her with someone to go home and clean up and take a nap...I have my entire life to nap and shower in my own shower (I have showered people just in the hospital shower). I have right now to be there for my daughter while she is in the hospital. I keep thinking ten years from now I won't remember a two hour nap or a walk in the nice fresh air...I will remember not leaving my daughter's side while she was in the hospital sick. I want to remember that I didn't leave her except for a few minutes. I want to remember that I did everything I could for her... I am going to take a nap today while my mom is here watching buggy but I'll take that nap in the room. Don't worry all you readers...I am taking better care of myself. I am sleeping more (or trying to), I am asking for help, and I am getting out of the room a little bit (just like now to type this update). Thanks for the support and thoughts.

Friday, February 20, 2009

Sponsor Me at March for Babies!



Sorry for the lack of update

I am in the hospital playroom while my mom sits with Delaney. I know that some of you count on these updates to know that everything is okay so I wanted to post a quick one.

The wireless internet is having issues so I cannot connect at this time.

We were transferred at 9:00 p.m. The ambulance ride went well. We arrived and they had no idea we were coming and had no bed available so they put us in a triage room with another infectous child and then told us that we both could not stay the night...only one of us. So I LOST IT COMPLETELY. I told them we were taking our daughter out of this hospital AMA or they were getting us a room. 20 minutes later there was a magical bed that opened on the specific floor that we needed (GI).

Before 1 a.m. we had been seen by 3 nurses and 2 doctors. This morning I have seen 7 doctors. They believe she HAD a virus (maybe Norwalk) but there is an underlying issue that came to the surface because of the virus. They are going to treat her for reflux right now (starting out small and not invasive) and then see how it goes this weekend and Monday if things aren't better we are going a different route. They are reordering labs and a belly xray for the morning.

Hopefully I will be back on the net soon. Thanks for your thoughts and prayers.

Thursday, February 19, 2009

GI Doctor coming to see us

Dr. C came in this morning and offered us a plan attached to our transfer. A bed will not be open until late afternoon/early evening so while we are waiting he is going to have a GI doctor come to US. He should be here in the next couple of hours to look at our little baby. They are also running all of the blood tests again...to make sure none of the numbers are changing for the worse. We said that if the GI specialist feels she still needs to stay inpatient we are going ahead with the transfer, if he feels it is simply a nasty virus that we can manage at home we want to go home. We shall see how it all goes...I will update after we hear from this new doctor.

Amazingly enough we are getting fantastic care today...doctors, specialists, patient advocates, etc.

Morning Update 2.19.09

Last night I broke down completely. I had been listening to little Peanut cry for over two hours straight (Jess was at home with the big girls trying to give them some sort of normalcy). I cried at the nurse and the doctor. Jess was here for the nurse and doctor visits...and she even raised her voice and became forceful with them. It was really cool to see. She demanded discharge or transfer and she told them exactly why. So anyway with everything being so stressful yesterday I asked if she could stay with me at the hospital instead of staying at the house with the big girls. We called their dad and he took them to his house for the night and their grandpa Mike took them to school this morning. I am so thankful that we have people surrounding us that can help. I think the big girls are staying with Gma and Gpa Lower tonight and once again being taken to school by Gpa Mike. My mom is also heading up early tomorrow morning to spend the weekend. Who would have thought we'd still be in the hospital where all this helped was desparately needed?!

Delaney did well last night with her 1 feeding during the night. She ate before bed, only woke once in the night to eat (1:45) and then woke us up at 6:30 to eat this morning. It's a really good sign that she is interested in food again. She's been hanging out in her crib just kicking and attempting to find her thumb to insert it in her mouth. She cuddled with Jess for an hour this morning and then I read her a book and put her cute little socks on her feet.

I took a shower to prepare for the transfer. Jess has just been so amazingly supportive in the fact that I don't want to leave our sweet little baby girl. I know she feels so torn because she has to leave to check on the house or get more clothes or take care of the big girls. It kills her not to here, but I am SO THANKFUL that she allows me the ability to stay and hasn't said one word to me about asking me to leave to go home. She also prepared me that I might not be able to ride with D to the other hospital...and the nurse came in and told us that they may allow 1 parent to ride in the ambulance with her. She immediately looked at me, said "Oh good you can ride with her while I follow you guys". God bless her! She is going home this morning sometime. She's going to pack a big bag for us and get her work clothes (she works tomorrow and Saturday). Since this hospital isnt as close as the one we've been in we need to pack for more days at a time. She's also going to take a shower, take care of the dogs, and anything else she figures out to do.

Here is a couple of pictures

This is her screaming while Jess was gone


Sleeping snuggly on my lap


She found her thumb!

Wednesday, February 18, 2009

Transfer

They are transferring us to the GI Unit at Jess' hospital first thing in the morning.

Lab Results

For all your nurses out there reading our blog...here are her new lab results...if you have any ideas PLEASE let us know

First number 2/16 results Second number 2/18 results

Sodium 139 136
Potassium 4.9 5.2
Chloride 107 105
Carbon Dioxide 26 23
Anion Gap 6 8
Calcium 9.6 9.8
Glucose 69 ?
BUN 2 2
Creatinine 0.6 0.6
Protein Total 5.4 5.2
Albumin 3.2 3.2
Bilirubin Direct <0.1 <0.1
Bilirubin Indirect 17 14.8
AST 146 105
ALT 34 34
Alk Phos 360 361

Crazy R

Crazy Nurse R was fired. I'm guessing what she said to us yesterday was the last straw in a string of inappropriate behavior from her!

Happy Birthday MAYA

Maya was born today to Dani and Tonka. She weighed in at 7lbs 14oz, smaller than expected :) Mommies and baby are doing amazing! We are so proud of you ladies for bringing such a wonderful little girl into the world! Delaney can't wait to chat with her new bestest cyber buddy!

xoxoxo

New Day...New Doctor

Our new doctor is amazing. She is doing repeat labs and a sonogram of her belly this morning. We shall see how everything goes.

At whits end


We are at our whit's end. Jess and I have had MANY discussions about the best course of action at this point. Here is what we are thinking... when we came here on Friday and then admitted on Saturday we felt like she had a virus and just needed fluids to help her dehydration. We were thinking a hospital stay of no more than 24 hours if at all. I just woke up to day 5 in the hospital so so much for the 24 hr or less stay we had prepared ourselves for.
When we brought her to urgent care here is what was going on:
  • Slight fever
  • 1-2 diarrhea every hour
  • 1 throwing up
  • More cranky than usual
  • Slight stomach cramping
  • Slight dehydration
  • Still eating 3oz every 2-3 hours
  • Still sleeping
  • Bilirubin 13.9 (up from 10.2 at 2wk apt)
  • Negative Rota screen
  • Diagnosed with Rota
Here is where we are now:
  • 2-4 poopy diapers a day all of which are diarrhea
  • 2-4 throwing up sessions per day
  • WAY more cranky than usual
  • Severe stomach cramping
  • Only eating 1.5-2 oz every 2-5 hours
  • Not sleeping well
  • High liver function tests
  • Bilirubin 17 (She is EXTREMELY yellow at this point for her age)
  • Lack of interest in food
  • Distended belly
  • Rash on head and belly (two different rashes)
  • Third negative Rota screen...still being told it's Rota
  • Very lethargic
It's hard to explain her everyday behavior but she is not herself now. Viral infections usually run their course within 5-10 days. We are on day 6 of the virus symptoms and by now she should be turning a corner and doing markedly better...not worse. Her liver function tests would not be high if it was just a viral infection or if it was due to dehydration, both of which the doctor keeps telling us.
We want more testing done. We want a CT or a sonogram to show that her liver and ducts are structurally appropriate with no blockages or swelling. The doctor thinks this is excessive testing.
Right now we have less answers than when we got here and we are watching our tiny one month old daughter deteriorate. She has small moments of her old self but they disappear quickly into the whining/cries of stomach pain.
Here is where Jess and I are at the moment...we figure we have four options
  1. Do nothing and continue with the doctor's course of treatment
  2. Plead our case AGAIN and see if we can get our doctor's Attending to come and see us to speak further about our daughter's condition.
  3. Speak to the patient advocate and see if anything comes of that.
  4. Request to be sent home if we are not seeking out answers and if she gets bad again take her to the bigger children's hospital downtown.
Number 1 is not really an option at this point. Both of our nerves cannot handle more of nothing. We are actually thinking about a combination of numbers 2, 3, and 4. In that order. We feel like we can keep her hydrated at home and if they are not going to attempt to figure out what is plaguing our daughter to help make her better we need to take her home and figure out our next move. We are going to meet with the doctor this morning during rounds. Plead our case again. If we go unheard ask to speak to the attending. If we aren't able to see him or if he also refuses to seek answers we will ask to speak to the patient advocate to see what can be done from that end. If we are still no where at the end of that process we are going to request to go home. Jess is also going to call her pediatrician today to see if we can persuade her to help us.

Please do not get me wrong. We are not attempting to "prove" something is seriously wrong with Delaney. We just want to know that all that can be done is being done. We want answers even if it's to tell us, we did the CT and it shows the liver is not the cause. We did this test and it showed that this is not the issue. I can handle "it's not" just as much as I can "it is". But please stop diagnosing her Rota when 3 different stool cultures have come back NEGATIVE. We are not seeking invasive testing that would harm our daughter or cause her unnecessary pain. We just want answers so that she can get better...not continue to hang out in the unknown and not get better.

Tuesday, February 17, 2009

Pictures


Throwing up on herself and her mommy right after I changed her clothes after her 1st throwing up is apparently hilarious!

Throwing up makes her smile


Not feelin so great


In her new hospital crib


Sleeping baby

Afternoon Update 2.17.09

Okay so crazy nurse update. Well this one is a "Care Assistant" whatever the heck that means. Let's call her Crazy R. So Crazy R has made some really inappropriate comments today. So inappropriate that I decided to speak to her nurse manager about the situation even though I really hate "tattling" on people. This woman told me our doctor almost killed a kid last week, that I should not have any more kids and should instead collect dogs, that she hates our nurse, that I shouldn't let the nursing student near our baby, and that a mother down the hall was driving her nuts. Oh and she is trying to get off work tomorrow for an interview at another hospital. What in the heck!? She is no longer allowed near us or our baby.

Onto the Delaney update. Her Papa Mike came up to spend some time with her today. He watched D while I walked downstairs to get a snack. It was the first time I'd left the unit since getting here Saturday. He stood next to her crib and stroked her hair and talked to her. It was very sweet and she LOVED it. We spoke to the doctor this morning and I completely broke down crying. I am just so frustrated and don't feel like we are moving forward at all. She ordered a thyroid screen, a viral screen, and a Rota test. Well the Rota came back negative (which it has now done three times but they still keep telling us she has Rota). The thyroid screen came back perfect. The viral screen won't be back for FIVE DAYS! She told us to continue breast milk, that we'd continue IV fluids, and then check back in later. Well later came...

She came back in to see her this afternoon and D has thrown up twice and had two blow out diapers. I told her that I was sick of this and that I was to the point where I want answers...even if the answer is that "this is not what is wrong". I want further testing done. We are going in the wrong direction....she is getting worse. They started a new IV in her arm because the one in her leg blew this morning/last night. She has developed a rash on her belly. Her belly button is poking out now because her belly is so distended. We are at a loss once again.

Oh and WE ARE SUPER EXCITED TO MEET MAYA TOMORROW!!!! It's the only thing that is keeping our spirits up at this point. :) You will be fantastic tomorrow Dani!

Morning Update 2.17.09

First of all let me just say that our nurse was crazy last night! She was asking Jess what she should do...as if she were Delaney's nurse not her mom (although I know she is A nurse she is not HER nurse...it makes a huge difference). She didn't really listen to us at all. She didn't take her temp except 1 time when it's supposed to be an every 4 hour thing. She didn't take her blood pressure even though it's a once a shift thing. We are ready for our day nurse holy cow! And if we are back again tonight let's pray we don't have Nurse D anymore.

Delaney slept well last night after we finally got her to settle down around 1:30. She slept until 5:30. She did throw up on herself once, pee all over herself once, and had two HUGE diarrhea diapers. Poor little baby just looks at us with eyes that almost say "Help me". We are still waiting on the liver function tests results to come back. We thought about asking Nurse D and decided to wait for our next nurse to ask instead. She is back off breastmilk completely and back on IV fluids and Infalyte. She seems to be cramping up pretty significantly. She is pretty awake, looking around, turning her head to our voices, grunting and "talking", lifting her head over and over again. She's doing all the normal healthy baby things which is promising. We are hoping to restart breastmilk at her next feed to see how she will handle it all.

That's it for now...I will update when we know more after the new nurse comes in and the doctor rounds.

Monday, February 16, 2009

Quick Update

She's kind of pathetic tonight. She's lost interest in eating again and is cramping again. They started the IV fluids again and did some blood tests. They rechecked her bilirubin and electrolytes. The electrolytes look okay but her bilirubin is up to 17. They're not really sure why so they're doing some liver function test. I hope she's okay!!

Staying another night


Delaney started throwing up again around 4:00p.m. The doctor obviously can't send us home with her still vomiting so we are here another night. Here are some pictures from this afternoon and maybe even a little video of D staring at her new glow worm buddy.


Delaney's fuzzy hair after her bath


Holding the binkie staring at her glow buddy


Delaney looking at her new buddy



video