Friday, October 31, 2008

A Badge of Honor

This is a Parent Badge.  You only get one of these if you have a child sick enough to be sent to Children's Hospital in Seattle.  This is a badge of honor.  When you walk the halls, and you see another person wearing this badge, you know that this person is not here because they want to be here.  They are there because they have to be here to be by their child's side through a very difficult and trying time.

Parents of these children are hurting and lonely.  They are praying for their children to make it.  The children they are praying for are hurting and sick.  Some have lost their hair, others have lost their hand or foot, others still look "normal" on the outside, but are very sick on the inside.  Still others will never be "normal" again, or ever were "normal".  But each of these children have been and are blessings to their parents and blessed to have parents who stick by their side through thick and thin.

Parents who wear this badge and stick it out smile at each other in the halls, and say nice things to eachother, because "they know" - it's like the wave that motocycle riders give each other.  We have been initiated into a fraternaty we didn't want to belong to, but are now a member of, and each of us knows that the others are here for the same reason - our love of our children.

We cheer when we see them going home - worn out parents carrying lots of luggage and wearing a big smile.

We feel for those who get off on the 4th floor -because we've been there (the ICU floor) and know that getting off on that floor means your child is really sick.  It also means sleeping in "the cave" and not being able to be with your child and your family at the same time.  It means loneliness and constant care.  It means watching your child endure countless painful procedures.  It means forgetting everything else in the world and concentrating on living moment by moment.

I'm so glad to be home, but I know there's still hundreds of parents still having to wear that badge of honor everyday - some have been wearing it for years, and some just started today.  I pray that each of them will soon enjoy the thrill of taking their child home with them once again and find the challenge of creating a new normal for their family!

I wanted to write this before we left the hospital - was creating it in my head everytime I walked the halls - but couldn't find the time, so here it is now.  I hope you can step into our shoes for today and say a prayer for all the parents, children, and care givers today at Children's Hospital.

Tough Schedule

It's great to be home!  Sleeping in my own bed is great - and so is relaxing in my own living room.  But it isn't "back to normal" bu any means!

First, here's some photos from our last days in the hospital - this first one is Esther in the teeny tiny hospital gown they had for her (she only wore it for this photo because it was blue - and I believe Esther's allergic to blue! LOL!)  We also took a great photo from the back, but you'll have to request a private viewing for that one!  LOL!

And then she got the "spa treatment" - a lovely bath to get her ready to go home!

And here she is in her car seat - she had to pass a car seat test to make sure she would handle being in the car seat for 2 hours without compromising her oxygen levels - she passed with flying colors!

And here she is in Elizabeth's arms, home at last!

Believe me, I know that life with a newborn can be demanding, but life with Esther and her needs is definitely something beyond that!

Tuesday ended up being a whole day away from home - 2 Drs appointments (all went well), plus picking up medical supplies and some emergency grocery shopping - all while keeping on Esther's feeding and medication schedule.   We  did great, but boy was I tired when we got home!

My "spare time" on Wednesday was spent unpacking and organizing/tidying my bedroom - Daryl had done a great job of cleaning up our bedroom, but my "moving" back in did a number on it!  That and all the wonderful gifts we received - and I'm afraid some of them got separated from their cards, and I don't know how I'll ever get any Thank You cards out!  I also worked on getting our laundry done because Daryl had run out of clean pants - he had started doing the laundry last week, but hadn't had time to get to the darks yet!  Also Esther had already gone through a lot of her cloths already tool.  Today I hope to fold and put away what I washed, but we'll see!

Thursday's spare time was spent making phone calls/appointments and attempting to get the kitchen cleaned and have the kids get caught up on dishes (again).  The kids did very well at staying on top of the dishes for the most part, but actually cleaning was another story - it definitelty is in need of a feminine touch!  I started by the garage door, got the fridge outside cleaned up and the cabinet doors above, and the stove and the little counter between cleanned and that was all the time I had!  At this rate, but the time I make it to the other side of the kitchen, I'll need to start over again!  I plan to get more kid help today - but they were doing dishes while I was cleaning!

I've gotten a big help from my dear friend,  Cindy!  She offered to help in any way, and I took her up on her offer.  This was really hard for me to do as I am such a "do it myself" kind of person, but I'm realizing very quickly that I just can't do it all right now - there's actually very little that I can do right now besides keeping Esther alive and growing!  So Cindy came by and picked up all the little kid's laundry (3 large garbage bags full!) and today she's  bringing it back folded and sorted!  Thanks Cindy!!!!!!!  You're an angel!

This morning I worked on getting my calendar up to date for orthodontists appointments, doctor appointments (for Esther and Dayton), and dentist appointments - I'm not sure how we'll accomplish all of this, especially since we have been told to keep Esther home as much as possible since her health is fragile and this is cold and flu season!  I'm slowly training Jessica on Esther's care, so she will either be doing the driving or the baby sitting for those appointments!  Either that or she comes with and Esther stays in the car!

Esther got weight at the doctors office on Tuesday and weighed in at 8 lbs 13 1/2 oz - she's gaining around 2 ounces a day now!  At home we weighed her on our postal scale and on Thursday she weighed 9 lbs 3 oz!  She's doing great on the weight gain.

Overall Esther's doing great - sleeps all night through (I only have to get up twice to add more milk to her bag, at 1 am and 5 am!) from 9 pm until around 7 am!  She's adjusting to the craziness of our home easily (I think in some ways it's quieter than the hospital!), and she seems to love all the attention!  The only things not going to well is her feeding from the bottle.  She's been having some trouble with this, gagging and choking, and I'm hoping that this will improve soon - she's only taking about 10 ccs per feeding, and not every feeding.  But she is taking the bottle, and I hope she'll get back on track soon!

Here's a photo Rachel took last night of Elizabeth in the new dress that Jessica picked out for her (it's from Costco and it was less than $20!)

I thought it would help offset all the attention the Esther will get at church on Sunday!
Oh - and it you attend church with us on Sunday - a warning - we won't be letting anyone hold her due to her fragile health, even deciding to take her to church is a difficult one for us, as so many have been praying for her all this time and haven't seen her, but yet there are so many opportunities to catch something at church!! We've decided to take her this Sunday, but we won't be allowing anyone to hold her just to be on the safe side! Sorry about that!
And lastly, Don't Forget To Vote! We are hoping to get our ballots finished up this weekend - it's the first time we'll have 4 voters in our household!

Tuesday, October 28, 2008

We are Home!

Esther and I came home late yesterday!

Her final blood tests all came back great - best CO2 reading yet!

We  took a while to pack up, and had to get all her meds, and get a feeding pump before we could leave, so we didn't get into the car until almost 3 pm.

Getting her all settled into her car seat, her feeding started and hanging from the clothing hook above the door, and everything packed in the car took nearly 30 minutes.

Once we got on the road, things went smoothly, just having to stop in Mt Vernon to flush her feeding tube and get her more comfortably in the car seat.

We picked up pizza on the way home, and had a quiet evening at home - but it took me a while to get things together with her feeding schedule, medications, pumping, and setting up for the night.

This is going to take a while to work out how to do things with her schedule - it took me nearly 2 hours to get up, feed Esther, pump, get dressed, eat breakfast and prep her feeds for her through 3 pm.

We leave in about a half an hour as Esther has a doctor's appointment and I need get supplies for her feeding tube/pump system, drop off FedEx shipments, and possible go look at breast pumps so I select one to purchase as renting the pump I'm renting now costs $20 a week!

I'll try to put up some pics tomorrow, but I think I'll be too busy today to blog anything further!

Thanks for praying for and supporting us during this difficult time!  Please pray that I will be able to stay consistent with her medications, find time for all my kids, and keep up my milk supply!  This will be a challenge - possibly even more difficult than being in the hospital with her, as the nurses kept the schedule and brought everything to me!

Saturday, October 25, 2008

Monday it is

Our doctor was willing to have Esther go home, but preferred Monday.  He said that if they could arrange getting the feeding pump I'll be using at home here today, then we could go home tomorrow, but weekends just don't work that way.

So it looks like once we get ahold of the pump or arrange to meet the home pump providers (it is in Bellingham) then we can go home (after paper work of course).

I got to spend the day with Daryl today - what a treat - we didn't do much, but just enjoyed being together.

He told me about the great giraffes above the giraffe entrance (I hadn't noticed them:

I also finally got a photo of the great elephant sculptures just inside the giraffe entrance:

Daryl and I also went up to the neighborhood market in search of a car magazine.  I called my sister-in-law as we left to see when she was coming to visit, and found out she was almost here - so she picked us up in front of the hospital (honestly it was like we planned it - we walked down to the street and she was like the third car to come by!), and we all went there.  It was an impressive little market, but none of the car magazines had "rod" in the title, so that was a bust, but we did find several flavors of Lind Chocolates, so we grabbed a bunch and headed back to the hospital.

Here's a great pic of Aunt Denise getting to know Esther (she gets a frequent visitor award down her in Seattle, by the way, tied with my brother Mark!).

We tried to go see a movie, but couldn't find the theater fast enough, so we just walked through Bellevue Square and ate out at Red Robin - we shared a milkshake, a half serving of the deep fried cheese sticks, and we also split a terriaki burger - just enough for both of us!

Daryl also brought Esther's car seat along, so I can test to see how she does in it with her monitor on - finding the right position to keep her "happy" on the trip home!

That's all that happened this day!  Hopefully, 48 hours from now, I'll be blogging from my home!

Friday, October 24, 2008

As requested, here are Esther's Stats!

Ok, she weighed 7 lbs 12 oz at birth and was 21 inches long.  As of 12:50 am tomorrow morning, she will be 5 weeks old.

Here she is in the hospital's swing - this garnered me a nice nap today!

When she came  to Children's Hospital she weighed 8 pounds even, and late last week, she still weighed 8 pounds.  This Wednesday morning she weighed 8 pounds 5 ounces, and this afternoon she weighed in at 8 pounds 7 ounces!

Yeah!  She's gaining weight!  And it looks like it's good weight too!  She's still off oxygen and staying high in her oxygen numbers.  Her breathing is still easy (she still retracts slightly, but that might be just the way she is until her muscles get stronger).

At her last measurement that I know of, she was still 21 inches long. So right now, she still weighs less than 4 of my other babies at birth!  But Elizabeth was smaller that Esther - at 6 weeks Elizabeth weighed just 7 pounds!  So Elizabeth still holds the prize as our "runt"!  LOL!

She's taking 20 ccs via bottle now (she graduated up from the binky trainer this morning) and we are trying out the Dr Brown's bottle - she's still swallowing a lot of air (like 20 cc of air swallowed during her last feed of 200ccs of milk).   This is where the doctor wanted her to when she went home - we don't want to push her too fast and compromise her delecate heart/lungs.  She is getting 60 ccs of fortified breast milk (or formula if I'm running behind) total every feeding, 20 ccs by bottle, 40 ccs by feeding tube.  The feeding time is spread out over 1 1/2 hours, so now she's off the pump for 1 1/2 hours.  We'll work our way down to 1 hour over the next week or so - but no hurry on this one.

Her respirations are still high - around 60 resperations per minute - but that's just going to be her average - she's not working to breath, and she's under 80, so she's safe to feed orally, and oxygenating well, so they are good with her rate for now.

So, I saved the best news for last!  We are going home!  The doctor said that if I was desparate to get home we could go home today, but he felt it would be safer to monitor her a little longer since she just went to using the bottle today, and it hasn't been long since we changed her feed from continuous drip, to feeding in 1 1/2 hours.  He said she would go home Monday for sure (baring anything unforseen of course) - he even had the hospital make an appointment with Esther's new pediatrician for Tuesday morning (they call me to change the time and let me know I had to arrive a half an hour early), he was so sure that she'd be home!

Daryl's coming down tomorrow, prepared to stay the night, so he can be present when they make "rounds" - and we are going to discuss taking her home on Sunday as that would mean one less round trip to Seattle, and that Daryl can be the one to take us home (he's ran out of vacation and sick time so he can't take any time off next week).

Going Home is starting to seem like a reality - it's been so long, nothing seems "real" anymore.  I will probably be really disoriented for a few days - and I'll probably have trouble sleeping in a dark, quiet place!  Esther too!  My bed right now, has 3 windows onto the hallway now and none of them have any light reducing covering, so I'm sleeping in a pretty bright room right now - but last night I slept really well, so it doesn't seem to bother me anymore!

My biggest challenge once home will be to keep all her medications straight and give them at the right time!  Here's her list (I asked for the nurse to give me the list so I can start to keep track of them):

Captopril - every 8 hours, on an empty stomach (this one's for her heart)

Lasix - every 8 hours (not on an empty stomach) (this one is to keep her from retaining fluids)

Lansoprazole - once a day at 8 am (this one helps her not to reflux)

Multi vitamin with iron - 8 am

sodium chloride - 8 am and 8 pm - this one is needed for the Lasix to work properly.

Plus on top of that she's supposed to start her feeds every 3 hours, and be taken off the pump when they are done after 1 1/2 hours.

See what I mean?  I've never had any child on this many meds, let alone ones that are so important!  At least I can give them easily through her feeding tube - no worries about her spitting them out!

Oh - one this about her feeding - she'll be on a continuous feed for 9 hours through the night to make my life easier (this was on my request as getting up to start her feed every 3 hours, and again half way between to stop them, would mean I would never get more than 1 hours sleep at a time! YUCK!).  This wasy I only have to get up every 4 or 5 hours to add more milk to her pump!  That will be more sleep than I've ever had with any of my babies!

Oh - and a few stats on me - I've now gone 5 entire days without stepping outside, 5 days without a visit from anyone from the outside world, 5 days without seeing my DH or children, 4 weeks and 5 days since sleeping in my own bed, 3 weeks since stepping foot in my own home, 5 weeks since having a home cooked meal, and 3  weeks since taking a bath or shower at home.

Lastly, I have one for you that beats all odds - check out this photo of an adorable outfit and matching blanket that Esther got to wear after her bath today:

The amazing thing about this blanket and suit, is that they were not purchased together - the outfit was a gift I got from my Aunt Marylin when Esther was just 2 days old, and the blanket I purchased here in Seattle when my sister-in-law took me shopping.  I found this blanket at Fred Meyers - and it was the only one of it's kind and there wasn't any matching outfits - I looked as the blanket was sooo cute, I wanted a matching outfit to go with it! So last night, I'm folding Esther's just-washed laundry, and as I fold this shirt and see the fuzzy sheep, I think "this matches the blanket that Esther's using right now - I'm sure of it!" - and sure enough, when I got down to her room, the outfit matches the blanket!  Amazing, eh???  And Ohhh Sooo Cute too!

Wednesday, October 22, 2008

A little fun

Today Esther's wearing my favorite outfit - it says "Bunny Love" on it - it's gotten the most comments and oohs and aahs from the nurses, as well as the doctors!  You can see for yourself how cute she is in it:

And here's what really gets the attention (remember, she gets her heal poked every morning, and she has a pulse-ox on her foot that needs to be moved every 4 hours, so everyone sees her feet!)

And lastly, here's a picture I just had to take - whenever Esther finished drinking and is completely done in - she'll look like this AFTER I remove the bottle or binky:

You have to realize that her lip is stuck to her chin and stays that way for several minutes - it's just hoot - I was sitting here in Esther's room alone, laughing out loud when I got the photo up on my computer!

Hope you enjoyed these photos as much as I did today!

PS - I had changed a setting on my blog that required people to register in order to post a comment, but now I've removed that setting as I think many found that registering prohibitive, so post away now!

Tuesday, October 21, 2008

27 hours and going strong!

Esther is still off oxygen!  yeah!  She's doing great too!

She's sleeping so peacefully - with her new sleeping buddies - the giraffe I gave her to celebrate moving out of ICU and onto the Giraffe Wing, and the bunny was from a mother of two down syndrome adults (whom she adopted) who I met in the cafetaria - her son gave me a picture he had colored out of the blue and that began a conversation between the mother and myself - we also ran into each other the next evening - and the evening after that I got a call that she wanted to give me something - it was this adorable bunny that plays a lullaby!

The doctor actually volunteered an estimate going home date - this has never happened before unless I've bugged them for a time frame (and even then they wouldn't always give me an answer) - he said about a week - she needs to gain weight (good weight, not fluid weight), stay off of oxygen and I need to learn to manage her feeding tube!

Now, as of just a few minutes ago, we are one step closer to going home - she pulled out her feeding tube while I was changing her diaper, so I got to replace her tube and put new tape on her face!  I'm excited because it was really easy!  She only fussed a little bit, and it went right where it was supposed to!  I've had a couple of opportunities to give her her meds via the feeding tube, and check for placement, and from now on, I plan to do this for her.

I did have a great night's sleep last night - only one glitch...someone tried to smoke in the bathroom and set off the fire alarms at 1 am this morning - we're talking painfully white flashing lights in every room, and extremely loud alarms in sinc with the flashing lights - it's very effective in waking everyone up - that's the intended purpose, but when it's because of someone's stupidity, it's just down right painful!  I took advantage of the interruption and pumped for Esther and put the milk on ice, and by then the alarm had been shut off and I went back to sleep - all the way until 6 am!  That's a record 8 hours sleep for me!

So while Esther is doing so well, things at home aren't going to well -  due to food poisoning mentioned earlier, now every one of the kids that was down here this weekend has thrown up.  The first ones to get sick are recovering nicely, but most are in the throws of it still.  At this point, Daryl hasn't had it....yet (but I think he might be out of the woods if he doesn't get it soon).  I'm all over it now - even ate a normal lunch and everything went fine!

Here are some photos of the great wall murals here in the giraffe wing :

(these are photos from floor one, which we were on last week - I'll get more photos of floor two, where we are now, soon)

Monday, October 20, 2008

And I thought yesterday was bad!

Last night I got sick!  I woke up with burping/indigestion, then diahrea, and then I threw up.  The diahrea continued until mid morning.  Since then, I've been tired and chilled off and on, but no more stomach symptoms.  I believe this is food poisoning, but Esther's night nurse isn't so sure, so she's requiring I wear a mask - the only problem is that I seem to be allergic to something in the masks - my skin turns bright red and itchy wherever the mask touches my face!

So it looks like I'll be getting a really good night's sleep, as I can't be with Esther tonight unless I wear that mask. I might try putting a lot of lotion on my face if she's awake, but I'm leaning towards sleeping as she'll be out on the floor tomorrow and then I won't get much sleep at all.

On the bright side - and this is really good news - Esther has been off oxygen since noon today and is still doing great.  They put her on a new medication to make her heart beat more efficiently, and they also decided that requiring her to have oxygen levels above 95% is actually compounding her problems, so they allow her to be anywhere above 84% oxygen - and she has rarely gone below that.

So, I'm off to have a really good night's sleep, and hopefully tomorrow I can convince the infectious desease people that this is food poisoning.

Sunday, October 19, 2008

Time for "The Glad Game"

First, Esther has her worst day ever on Saturday, then, on top of having done something to my left shoulder the middle of last week (painful to lift my arm), I tweak my right shoulder last night - so now it's painful to lift either arm.  Then tonight, I get a phone call from Daryl and Dayton had thrown up all over a couch in the kid's play room, so they got everyone up into the bedroom and Elizabeth throws up all over one of the beds!

At this moment, Daryl and the kids are packed and ready to leave, but they have to wash the bedding before they can leave - problem is, there is only one washing machine that the bedding can be washed in and it was occupied!  So now they have to wait even longer before they can leave for home.

I've decided it's time to play the Polyanna game - "The Glad Game" - to prevent severe depression.  The Glad Game comes from the book and movie "Polyanna" and if you haven't read the book or seen the movie, you should do one of the other - they are sweet and are such a good reminder that even in the darkest of times, if you look you can see things to be glad about!

I'm going to list the good things I can find in the middle of things that are so hard to handle.

Esther going back into ICU - I get more sleep more and I'll have more time to blog - also a BIG GLAD is that if she hadn't been in ICU, the kids would have all spent a lot of time in her room - The kids only got to see Esther for about 2 minutes Friday night!  So Esther and I would have probably gotten what ever it is they have, and this could have been extremely dangerous for Esther! This one is truly another "God Thing" for Esther!

I had been bummed that I wasn't able to spend much time with the kids over the weekend and had looked forward to spending more time with them once Esther was on "the floor" again - now I'm GLAD I didn't because now it's unlikely that   whatever they have!

Poor Jessica and Daryl having to clean up that nasty mess - I'm GLAD I don't have to do it - first time in a long time that  I haven't had to do it!

I have to go back to sleeping in "The Cave" again - I do sleep really well in there as it's soooo dark!

I have to eat my meals alone again - it' easier to clean up, and I don't have to carry my tray all the way to the room (I think that's how I messed up my left shoulder).

I've been away from home for over 4 weeks now, and I haven't attended our church in over 9 weeks (bed rest for 5 weeks before Esther was born) - we did get to attend the church Daryl and I grew up in and got to see loved ones we haven't seen in years!

The kids leaving again - I won't be torn between spending time with then and time with Esther.

That didn't seem to help much, but it sure helped me to see how God planned things to protect Esther!

Please pray that neither I nor Esther get this bug, and that none of the other kids get it either, for Jessica and Daryl's sake if nothing else!

Saturday, October 18, 2008

A Quick Update

Since Esther went to "the floor" I was unable to find the time to update my blog!  On the floor, Esther's nurse was responsible for several patients, so I rarely left her except for meals, and much of the time I was holding her and caring for her (as well as still pumping for her).

So, you may ask, how did I find time to post now?  Well, there are several reasons.   First of all, I am not in the hospital right now.  We got a room at the Ronald McDonald House Friday!  So for the first time in 4 weeks, we are together as a family (with the exception of our two oldest boys)!  Last night I even got to spend the night with them.  This is because Esther is no longer on "the floor".  We can stay here until Esther is discharged - the only catch is that only 6 of us can stay overnight, so the rest are staying at Daryl's brother's house.  This means driving out to Mount Lake Terrace every evening, but it's better than being 2 hours away from each other!

Esther started having more difficulty with her CO2 levels when she was on the floor, and starting late Friday, she started having more difficulty breathing, and was very uncomfortable all night (I only got about an hour's sleep Friday night because she  was very uncomfortable due to her breathing difficulties and would only relax if I was holding her).

By Saturday morning, it was obvious that she had gone into heart failure again.  So she was transferred back up to NICU so they could concentrate on getting her back on top of thing.  The doctors are saying she'll be in  NICU for at least a couple of days.  They believe she went back into heart failure because they reduced the Lasix too quicky, so they will be more conservative this time around.

We are going to go to church at Seattle CRC this morning - the church Daryl and I  grew up in.  It will be the first time I've been able to attend church since the middle of August!  I believe this is the longest I've ever gone without attending church.

I've got to run, but I'll try to post again soon, as I have some photos I want share, but I've got to get over the hospital and spend some time with Esther before we leave for church!

Please pray that they can find the right combination of meds to stabilize her enough to get her on room air so we can take her home soon!

Tuesday, October 14, 2008

A Room with a View!

We had a busy day!  We got to move onto the "floor".  This means I can stay with Esther 24/7 (well I have to go to the cafeteria to get my meals), and best of all, we have a window!!

I believe she'll be in this room until she's discharged, most likely this weekend!

This afternoon, her nasal cannula (the tubing that gives her oxygen) and feeding tube tape was almost off of one side of her cheek, and then she loaded her diaper and shot it all the way to her arm pits, so she got a bath and the nurse removed her nasal cannula and re-taped her feeding tube.  Then we watched Esther as she was on room air (no oxygen added) to see how she would do (the doctors wanted this done today to see if she was ready to be weaned off the oxygen).

Here's Esther with a "bare cheek"!

We did this a couple of times last week before we came to Children's, but she always failed very quickly.  Today, she held her oxygen level great for 45 minutes and then was really sound asleep and her oxygen was staying in the 80s, so a new, smaller, cannula was put on and she's been resting peacefully ever since.

Esther also got "wedge" from the occupational therapist - this helps Esther to not reflux (spitting up without it actually coming out) - we call it her throne!

This "wedge" will go home with Esther and it was custom made just for her!  She even has a little wedge for changing her diapers!

Tomorrow on "rounds" I'll be finding out what "the plan" is for her time here as far as preparing both Esther and I for going home!

Prayer needs - Strength for Esther to get off oxygen, that her neighbor will be able to go to sleep (he has a very sore finger and he's just a little guy), and that I can get more sleep - I'm really getting tired (the most sleep I've had in one night is something like 6 hours and I'm definitely not 20 something anymore!).

You know you've been gone too long when....

you walk in the door of your home and your 2 year old looks up, gets a confused look on her face and says, "Mommy, are you home???" - like she's wondering if she's dreaming or something!

This happened a week ago last Friday when I came home unexpectedly.  The funny thing is, once I said, "Yes, honey, I'm home" she went right back to playing!

Here's  a photo of her taken last month after Jessica did a "make over" - curled her hair and put some make-up on her and did a little photo shoot!  She really enjoyed all the attention, that's for sure:

Is she a ham for the camera or what???

Sleep is so important!

I feel so good today!  I got 5 whole hours sleep last night - 2 hours, then 3 hours.  It might not sound like much, but when added to the 2 hours deep nap I got yesterday, I feel better than I've felt in a long time!

I found a photo I took with my blackberry last Saturday of my little ones checking out the awesome fish tank in the cafeteria - all of us were enthralled by the beautiful and interesting fish in this tank - they are all so large!

Last night I was cuddling with Esther, and a nurse came through and just loved how we looked together - she got the hospital camera and took a photo and printed it out for me, as well as used my camera - I think it turned out sweet:

Nothing new to report yet - I'll blog again later today after "rounds" with the staff (I always pictured the doctors making "rounds" by going from room to room to check in with patients, but here, "rounds" are all the staff sitting AROUND a table with laptops and the parent comes out to listen in and ask/answer questions if needed) if there's anything new.

We will probably get to be moved out of NICU and onto the cardiac floor - this means our own room, and I'll move in with her and have my own bed there in the room with her - even our own bathroom/shower!  I'm so excited to be able to be with her 24/7!!!!!

Sunday, October 12, 2008

24 days

Nothing new to report this morning, just that Esther is still doing well - her respiratory rate is now averaging 60 - 80, but at times will stay in the 40 - 50 range!

Yesterday afternoon Esther and I got a visit from Grandma Vinup and Uncle Tom - we had a nice long visit too!  They both got to hold her and she even got a bath last night - bubbles and everything!

Here's "Graeme's Spa Treatment" (the name's gaelic - I love the name!):

And I believe in this photo, she's telling us how much she loves to take a bath - "I love a bath This Much!"

She loves having a bath so much, it makes it fun for me too!

And then after she's so awake and loves to spend time watching us!

She had a long awake time last night - it was so nice to be with her while she was awake again (she really didn't have much awake time on Saturday, and on Sunday she only had an awake time early in the morning.

I'm really short on sleep, so today I am really looking forward to Esther getting her own room where I can have my own bed right next to her - maybe we can even spend some great time resting in bed together, all cuddled up! I can hope!

I'll try to post again today after the morning meeting with the doctors, especially if there's anything new to report!

Have a great day today!

Good News

Esther is responding well to the Lysix!  She's lost 6 oz in 24 hours - that is a lot  to loose, but she gained most of that just since Friday morning.  Her face is even looking different - we thought she was just losing that newborn look when her face started to look more round last Thursday, but in reality, she was retaining fluids in her face!

My "room" - I prefer to call it my "cave", but it's great as it feels like night anytime of day!

(I took some pictures this morning on my way to the cafeteria, and I'll share them here and there in this post so you can see what a nice trip I have 3 times a day!)

The restrooms upstairs all have showers and lotion dispensers.

So now she's resting so peacefully this morning - now she's not struggling to breath, her respiratory rate is down to around 70 breaths per minute (as compared to 90 - 120 yesterday morning),  she's nice and pink again (she was very pale yesterday), and when she's sleeping she looks like she's having beautiful dreams!

There's also a laundry room, and the soap is provided as well! I made use of this today - it's so nice to have clean clothes!

The "plan" now is to work her down from 100% oxygen blown in at 1/4 liter per minute, which she was at all day yesterday, to a level where she can be transfered to the cardiac floor (that is where I'll have a bed right next to her and can be by her side 24/7 and we can have more visitors at once, anytime between 10 am and 8 pm!).  She's currently getting 30% oxygen at 1 liter per minute, and this is good enough, but they want to see her maintain this and test her blood gases to make sure she's handling this well, then possibly reduce it further, but actually she can go to the "floor" at this rate!

Outside and inside the Train elevator.

This morning at the conference with the doctors, I heard the magic words "WHEN SHE GOES HOME"!  I asked him to repeat that - and he did - I just had to make sure I had heard those wonderful words from a doctor!  From here it looks like she'll be staying here until she is discharged - she won't be going back to Bellingham, but from here she's GOING HOME!  You have no idea how this blesses my heart - we are getting close!
Here's the walk to the cafeteria - a long corridor with trains and pastoral scenes up on the wall:

(when Daryl brought Dayton and Elizabeth for a visit yesterday, they loved this part of the hospital!

Today we are looking into the possibility of setting things up for my family to stay in the Ronald McDonald House next weekend (if she's still here), as we have not been together as a family in over 3 weeks now.  I think it would be a great way to get us together and it sounds like it's a great place for kids - play rooms, lots of other kids to play with, great accommodations - and all so near to me and a Esther!  There is a waiting list, so we can't be sure that this will work out - and who knows, maybe Esther will be discharged before then!
Here's the scenes once we get out of the Train wing and into the Whale Wing - this is the outpatient area and cafeteria:

And here's my view from "my table" where I eat my meals - my little glimpse of the outside world 3 times a day: