Esther is out of CICU

Esther has moved to "the floor" today!  She's doing great, and has even been off morphine since early this morning, and just on Tylenol and resting comfortably!  They will be removing her central line as well as her arterial IV, and then placing a new peripheral IV before she goes to the floor.  She's been getting breast milk by feeding tube all night, increasing from 5 ccs per hour to 25 ccs per hour this morning.  She hasn't had even one episode of reflux at all.

Here's a sweet photo I got of her late last night when she was bundled to get her temperature back up:



She has been having mucus in her  throat, and for some reason she doesn't like to cough.  They used deep suctioning to get rid of it last night, but this morning, they really want her to cough it up, and so far she's doing well.  She's been having trouble regulating her temperature - bundle her and she gets too warm (like 99.9), but if left with out a blanket she gets really cool.  Sometimes even just a blanket loosely over her can make her too warm too!  Hopefully she'll level off once we can get clothes on her (once her lines are out she can wear clothes again.

She also gets to start binky training again today!  She will be so happy!  She's been sucking for all she's worth whenever she's not sleeping.

I finally went through my memory card and got some of the photos we took last weekend when Esther got many visitors!

First Uncle Ed, Aunt Denise, and Uncle Duane came by:



Aunt Denise even got some smiles from Esther:



Then Auntie Lisa came and had a great time talking with Esther:



Auntie Lisa brought Esther the cutest Lady Bug, whom we will call "Lady" - Esther loves the bright colors - we suspended her from the mobile above the swing, and soon Esther was taking aim and hitting Lady like she was a pinata!




Then after lunch, Daryl's sister, Jeanne (Esther's middle name is Jeanne), and her family came by on their way home to Indiana!

Here's Esther with her cousin Caitlyn - she had the touch and soon Esther was sound asleep, and sprawled in her lap"




And here are Caityn's brothers, Aaron (has his pilot's license and is going to college), Nathan (also attending college), and Derrick (he and Caitlyn are in high school):


and here's Jeanne and Dave laughing with Daryl:


That was a lot of visitors, that's for sure!

It is well with my Soul

 This morning my Itunes was playing "It Is Well With My Soul"

It is well with my Soul

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


Though Satan should buffet, though trials should come,
Let this blessed assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

- Words by Horatio G. Spafford, 1873
- Music by Philip P. Bliss, 1876
The words to this hymn was written after two major traumas in Spafford's life. The first was the Great Chicago Fire of October 1871, which ruined him financially. Shortly after, while crossing the Atlantic, all four of Spafford's daughters died in a collision with another ship. Spafford's wife Anna survived and sent him the now famous telegram: "SAVED ALONE." Several weeks later, as Spafford's own ship passed near the spot where his daughters died, he was inspired to write these words.


Bliss originally named the tune "Ville de Havre" after the ship on which Spafford's four girls perished, the SS Ville de Havre. Ironically, Bliss himself died in a tragic train wreck shortly after writing this music.

(http://www.the-synergy.com/lyrics/itiswell.html)

This morning I reflect on all I have gone through this year, and I see that God has lead me through very difficult trials, but that through it all, He has given me the grace to stand faithful to His call.   In light of the tragedies that Horatio Spafford went through (it doesn't mention it above, but preceeding the fire, his only son died suddenly at just 2 years of age), my plight seems small indeed.

I got to hold her!

She is uncomfortable when she is moved, but soon settles in.  She had a great awake period after I held her, but I was so exhausted, I just had to sleep, so she got some daddy time instead.

Here we are all together:



Getting her into my arms is a three ring circus - she has more lines that you could ever imagine!!

And here she is during her super awake time - she was evenbatting at her Lady Bug toy from Auntie Lisa!



We found out today that our propane tank is empty - the kids came home to a cold house, could water, and Daryl's shop smelled like propane - that 500 gallon tank was topped off in October, so we are thinking that something went wrong with the heater in he shop and it drained the tank. This is very upsettiing as it is a fire hazard and that is hundreds of dollars of propane gone. This month has not been easy on our finances, and December is notorious for being slow in the cloth diaper market...and thei year was definitely no exception.

I'm not sure how we are going to make ends meet over the next couple of weeks, but I know God will provide.

Day 2

Esther is looking so much better!  They've removed the drainage tube and wires from her chest, her urinary catheter, her stomach suctioning tube, and her breathing tube!  She's breathing on her own, and is getting very little oxygen.  She breaths soooo slow now that I just can't get used to it!

Oh - and she's past the critical "first 24 hours", so unless she develops an infection, things should go great from here on out.  She'll be coming out of ICU sometime tomorrow, or maybe Thursday at the latest.

If you remember, her "baseline" for breathing was 60 - 70 breaths per minute, but now she's 20 - 30!   It almost scares me into thinking she isn't breathing!  I haven't been able to hold her yet, as they just removed the breathing tube about an hour ago, and they wanted her to rest and level out before we hold her.  So I took a shower and Daryl and I had lunch together.  She's still sleeping, so we are waiting for her to wake up.

Jessica and the kids are on their way home right now. They wanted and needed to be home.  Daryl is staying here, and we are with out a car, but Jessica can come down when she gets discharged, or maybe God will surprise us with an unexpected ride home like last time when Daryl's sister-in-law had to be down here for a doctor's appointment and was able to pick Esther and I up and take us home!  Who know!

Today I'm really tired and out of sorts - I think the stress of the last few days has really taken a toll on me.  I'm going to make this short for now and take a nap until Esther wakes up.  I'll try to post some photos tonight!

On the other side now for 5 hours

Esther is doing well.  She's heavily sedated, but she does respond to my voice.  I am so exhausted I don't want to do anything, so I'm going to keep this short.  They are going to keep her on the ventilator until morning and possibly longer since her lungs have been so overworked lately and still had fluid in them.  With the ventilator in she's not working hard,  so it will be easier for her right now this way.  I won't be able to hold her until the ventilator is out, so I'm just resting here.

We did find out that in CICU a parent can stay in the room and there's a couch/bed.  That was such a relief as the "caves" are full, and the RMH will only allow 6 in the room.  The 4 oldest boys went home, so we don't have the hotel room anymore, so that meant we had one extra person.  We were trying to make arrangements with a brother, and it would have worked out, but it's so nice not to have to deal with that now!

My sister is going to stop by tomorrow before she leaves, and she was able to talk with her doctor.  She'll be having surgery once she gets home.  Lisa sounded so much better today, and God is giving her much grace right now.  She was so relieved to hear that Esther was doing so well.

We also got a visit from Pastor Steve - yes, he drove down her from Bellingham today just to see us and Esther and pray with us.  Now that's a caring pastor!

Here is a photo Daryl took of Esther while I was cuddling with her, waiting for the call to go to the OR this morning:



And here's on he took just after we were able to see Esther in the CICU:



She's not really looking at me, I was just trying to stand where she could see me if she was able.

I'll try to blog more and catch up on photos of Esther visiting with her auntie Lisa as well as her cousins from Indiana!

Please pray for Esther as she goes through this critical first 24 hours - there's still many things that could go wrong, but she's made it through most of her hurdles.  And also pray that she won't get any infections or illnesses.  Thanks so much for supporting us through all of this!

she's in ICU

All is well and we should be able to go back to see her any moment.
Praise the Lord
I can not describe how relieved I am!!!!!!!!!

Esther's off the bipass...

And everything is looking great! We should hear from them again in about an hour - they still have to close everything up and work her way to CICU. The next call will be for us to go talk with the surgeons and then we should get to be with her soon after that.

Esther's on the bypass machine

They just let us know that she's doing great...that was fast!
I'm so tired I can,t keep my eyes open, so I'm going to nap until the next call.

we are waiting...

We just got the first of 4 pages, this one was to tell us that they had started and that things are going fine so far. The next page will be to let us know that she is on the heart lung machine and they see what needs to be done.
So far, so good.
Handing her to the nurse and walking away was the hardest thing I have ever done.
My sister, Lisa, will be going home tomorrow, and she hopes to come by later today. She doing well under the circumstances, but please pray that she will experience the peace that passes understanding while she waits to go home and get to the bottom of her pain.
I will post again after the next page (I'm using my blackberry to post today).

In the Garlic Press

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 2 Cor. 4: 8-9 (NIV)

I don't know what to say....I really thought things would not bet  getting anymore difficult  than they already are. I was wrong.

My sister is going to be heading home to California tomorrow to have some biopsies done to figure out what's going on.  I feel so bad for her.  She's tried to hard to eat right and live a healthy lifestyle, yet has had to undergo 2 major surgeries this year, and now this.  My last phone conversation with her this evening we were both encouraging eachother to not worry about this, but to trust God because we can't change anything by worrying about what might be or what might not be.

I was totally losing it earlier, and still feel like I'm on the edge, but I'm also feeling a sense of peace again.  I just know that if I get any sleep tonight, it will a gift directly from God.

My Polyanna moment (man I need t play the glad game tonight) for tonight is that I am soooo glad that she was able to come and have such a great visit with us today.  Esther was wide awake, talking to her Auntie Lisa and smiling.  Here's one of the photos I took today - you can see that Esther is really telling her Auntie Lisa all about something, and it must be something she really liked:



We had many visitors over the last couple of days, and I've got lots of photos to share, but I'm going to wait until Esther's out of surgery and I'm spending time in ICU with her (can't use cell phones, but I can be online with my laptop in there!).  So I'll catch you up then, as well as post updates as often as necessary as Esther recovers.

Quickly...

Esther's surgery is tomorrow morning.  We will walk her to the OR at 7:15 am.  We will get updates periodically during the surgery, and we should be able to see here again around noon.

Today my sister came to visit, and then headed towards my sister's house, stopping to do some shopping.  She had some severe abdominal pain, and ended up driving herself to the hospital and is still undergoing tests to find out what is causing this pain.

Tomorrow is my uncle's funeral as well.

Please pray for all these needs, and for peace for me through this difficult night.

I'll probably blog later if I can't sleep, but for now, I'm cherishing Esther!

Thanks1

While we wait...

we cherish.  I'm enjoying some great times with Esther.  Almost each day she does something new. Starting yesterday she was sucking on her upper lip so loudly you could hear it out in the hall if the door was open!  She's also been fascinated with her tongue, licking her lips, or just pining it between her lips like this:



Today she laughed twice.  I just can not get enough of her smiles!  She's reportedly the cutie on the floor - nurses come in and say they heard rumors that there was a really cute baby around here, and they all say the same thing..."she's so cute" or "you are so cute" if they are talking to her!  Here's some photos I took today of her:

First, here she is seriously talking to here daddy:



And here she is during a smile fest with me this evening:





Hope you enjoy these photos as much as we've enjoyed seeing Esther bloom and grow!

Merry Christmas Everyone!

This will be short and sweet.  Very little happened today.  We all had breakfast together at The House, and then we tidied the room, and then I left with Jessica for a quiet morning with Esther.  Then my breakfast attacked me, and I took some pepsid and a long nap.  My stomach was better, but not good.  Then Jessica swapped places with Daryl, and we had lunch together.  To be nice to my stomach, my lunch was not the Christmas dinner, but vanilla yogurt, toast with butter, and vanilla pudding.  Boring, but nice to my sore stomach.

We spent the afternoon quietly watching TV while I cuddled with Esther.  Then Santa stopped by, and we got a cute stuffed puppy and a photo with Santa - it's actually a really cute photo as Esther is really staring at Santa!  It's a poloroid, so I can't share it, sorry.

Then Esther was sucking on her lips so much and with such energy, we decided to let her do some binky training - she loved it! They had 10 ccs (1/3 oz) in the first syringe, and when that was done, she got really ticked - and she took in all but .5 ccs of the second syringe and then was very satified - you know, the little grunting breaths that babies do when their tummy's full (daddies have been known to do this after Christmas dinner too!).

Then we to take her to dinner with us, and back to her room.  She fell asleep when we were almost to her room and is now resting peacefully!

Merry Christmas!

God Bless Us, every One!

Esther's surgery has been moved to Monday

Due to her ear infection, they have moved her surgery to Monday.  Mixed emotions that's for sure.  While it will give more opportunities for her relatives that have come home to be able to see Esther before her surgery,  the delays definitely make things more complicated for our family.

We have the hotel until Saturday, and Daryl has more vacation time left, and we have a friend of the family and a neighbor working together to keep out animals alive and well,  but it's so hard to decide what to do.   Should we try to get the hotel to extend our accomodations, or send some of the kids home.  I guess we'll have to talk with the kids and see what they want to do, and weigh that with our options.  Also, Daryl has a paycheck waiting at work that we need to get into our bank account, but how do we get it there?

Daryl just showed up over here - he woke up early as usual and came over here and we'll be hanging out here until the kids wake up.  A breakfast is being served at The House at 8:30, so we'll be heading over there soon.

Anyway, I just thought I'd post about the change in plans, as I know many are praying for her!  So more days of praying for her to stay healthy!

Christmas morning, and all is well

I woke up at 5 am on Christmas morning when Esther was crying because she had scratched herself on the forehead, and found my clothes neatly folded on top of my laptop and gifts for Esther in her crib!

The security guy reviewed the tapes and figured out who had taken my clothes.  It turns out it was just a mis-understanding. There is a bin under the counter that is "free for the taking" - un-matched socks and small items. This mom thought that the clothes on the counter were also free - someone had needed the dryer and had put my clothes on the counter - this is common and happens all the time.  So the security guy contacted her and I guess she felt horrible (made me feel bad, but I did need my clothes!), and even re-washed them and then they made their way into my room after that!

So all's well that ends well!  Again, this just goes to show that over-reacting to situations just doesn't pay.  I was really tired last night, and it was quite upsetting to find my clothes missing.  My initial reaction was being very upset, but I prayed about it and talked myself into trusting God for the outcome, as well as getting my emotions under control.  God is good, and I was able to sleep during the night, unconcerned about my clothes.

Psalm 4:8 - In peace I will both lay myself down and sleep, for you, Yahweh alone, make me live in safety.

That was weird!

Ok, so it's late, I blogged for too long.  So I'm going to get ready for bed, but I realize I did not retreive my laundry from the laundry room when I got back this evening.  That means I wouldn't have any clean pants for tomorrow (I have a few more shirts than pants in order to pack light).  So I head on up to get it, and their I find an empty dryer, my socks and underwear on the counter, but no clothes!  I look through all the washers and dryers, but there is nothing.  I look through the basket underneith the counter...nothing.

I take my underwear and socks and head back to my room, but decide to tell the nurses in case the write over the security tapes every 12 hours, as I put the load in around 2 am.

So instead of going to bed around 11 pm, I have to wait to talk with the security guard.  He is very kind and compassionate and  lets me know he will review the security tapes and let me know as son as he knows anything.  I tell him that I really need some sleep and that I can wait for morning to hear if he found anything.

So, I have clean underwear and a clean shirt, but how in the world am I going to wash my now, one and only pair of pants?  I'd have to wear my pajamas while it washes, and the laundry facilities are on the other end of the building!  And jeans won't usually dry overnight hanging in the bathroom either!

It might be a simple mistake, but how in the world did all my underwear and socks get left behind and all my clothes are gone when they were washed all together so I wouldn't hog the machines????  If I see some woman wearing my clothes tomorrow, what do I do????  LOL = "hey, those are my clothes, give them to me right now!"  LOL..  This is just so weird!

(heavy sigh)

Merry Christmas to all....and to all a good night!

Christmas Eve in Seattle

Today started out with a breakfast in Esther's hospital room, and getting this sweet picture of Esther:



then getting picked up by Daryl and going to The House to get the goodie bags ready.  Jessica had been working hard all week to make new, personalized goody bags for her.  I helped a little this morning so she could get her breakfast, but here she is sewing away:



Then we packed them with their presents, and called them up from the basement playroom where they had been impatiently waiting - here's the before photo:



And here's once the mayhem had begun:



And here's the resulting chaos:



Here's Elizabeth with her first set of twins:



The kids surprised Daryl and I by putting together a goody bag for us too! There was chocolates for us to share and bath items and hair pretties for me! Cool eh?

Then Daryl and I took Elizabeth with us to visit with Esther, and we found out that they were going to remove and replace Esther's feeding tube, and that if we could all get together, we could get a family photo while it was out!

So Daryl went and brought all the kids to Esther's room and this is the great photo we got!



I must say that sitting in the hospital this much hasn't been kind to me, and we aren't in our usual spit-shined condition we usually try to achieve for family photos, but I'm sure you'll all look past our every-day look and see the spirit behind this get-together! In spite of all we've gone through and are going through, doesn't everyone look marvelous???

Then we also got a super cute photo of Esther without her feeding tube and in her cutest outfit:



Notice her nice IV still has the ribbon in it!  Too bad I didn't have pink ribbon to match her outfit!

Then we ended up waiting in the room for a while - longer than was comfortable anyway, so I took this photo of the kids and Daryl trying to be patient and sharing the seating for fewer people than were in the room:



So then the kids went back to The House for some activities, and Daryl and I had lunch with Esther. Then I took a much needed nap while Daryl watched Esther (well watched the Speed channel and checked Ebay for Chevelles ;) while fielding phone calls and nurses questions/information). Then it was time to go to the House for the big Christmas Eve Dinner, sponsored by the Seattle Police Department. While we were eating the dinner, "Santa's Helpers" were putting gifts in the rooms for all the families staying at The House - here's what we came in to find:


It was awesome! And here's the resulting happy Kaos, once again only on a bigger scale than before!


Then is was time for me to go back to Esther, and I spent the evening cuddling her and watching several episodes of "17 and counting", a TV show about a family with 17 kids and one on the way! Makes my family look small in comparison! They are an amazing family and we share many of their values. It was amazing to see Christianity portrait in a positive light on TV, as well as Biblical principles lived out in their lives and those of their children!

Esther showed us this morning what all that illness was really about - an ear infection!  She sported blood and puss from her right ear this morning!  So she's not on antibiotics, and we are unsure of her surgery at this point.  Last rumor was that it was moved to Monday, but we can not get any information from cardiology as to day or time yet!  I'm hoping we'll find out tomorrow, but I'm not holding my breath as weekends and holidays are notorious for not seeing doctors unless it's an emergency! At least this ear thing is not new - she was in pain the last two days and we just couldn't figure out why - and she does not have a fever now either. The discharge is just her bodies way of releasing the pressure at the end of the infection, and the antibiotics are "just in case" she has any infection left.

Please pray for patience as we continue to play the waiting game, and that Esther will continue to recover from the ear infection and not get anything else so her surgery can go ahead soon!

I hope you all have a very Blessed Christmas!

Surgery scheduled for Friday

A lot has happened since I blogged last - all good.  She got out of ICU just after lunch yesterday and was looking soo good!  Better than she's looked all month, in fact!  The doctors all commented on it, as well as the nurses.  We got a nice room when we returned - only slightly smaller than our last room, but a nice view and in some ways a better set up.  As Jessica mentioned, it's right next door to our old room.  We even got Esther's favorite day nurse, Kristen - I found out she requested to have Esther.  She's the nurse who got things going for Esther on Saturday when she really needed it!

Here's Esther in ICU:




Once Esther was settled in her room, I had Daryl bring Jessica over here for a break from the little kids.
Here's the view from our new room - a Winter Wonderland for sure:



Just before we left ICU, I added a bow to her IV:


We played a great game of Nerts - I even won, but only by 2 points!  Then Jessica stayed here with Esther and I went to spend the night with Daryl and the kids.  Dinner was made by "Side by Side" - an outreach from University Presbyterian Church, "to come along side families with seriously ill children".  It was a delicious dinner, and they also had cool crafts for moms and kids!  I got do do one of them, and the kids all got in on the fun!

Then, since Dayton had fallen asleep in the room, I stayed in the room with him and Elizabeth and cleaned/organized the room.  We have chores delegated at home, but it's tough to find new routines that work when away from home and mom isn't around.  Daryl was taking the boys to the hotel during that time - he was pleasantly surprised when he got back!  Then we watched a Chritsmas movie and got the kids tucked in for the night.

I couldn't sleep as for some reason, the "sleep comfort" bed I slept in seemed to send most of the inflation to the foot part of the bed, resulting in indigestion/heartburn and the sensation of being upside-down!  Around midnight, I tried switching to my head at the foot of the bed and it was much better, but I still couldn't get to sleep!  So when Jessica called just before 3 am, I was still awake and ready to get over to be with Esther.  She was having gas pains from starting back on feedings again.  So I cuddled with her and the nurse gave her some gas medication (she's had it before, most of the time), and she settled down for a good sleep, for about an hour.  We had an uneventful morning, Daryl brought Rachel over for games and mom time.

Esther started showing signs of retaining fluids this afternoon, and finally around dinner time, the doctors agreed with me and gave her a dose of Lasix.  For now, they'll give her Lasix by IV as needed until we see what her needs are.  She's been awake most of the day, but very fussy this afternoon.  She had one IV taken out, as well as a circle band aid kind of thing from her cheek, and she also had her feeding tube re-taped during the night.  Then she started sporting some bright red spots and crying like she was in pain.  We gave her Tylenol, and eventually the redness went away.

The middle kids went to a movie "with Dave" - a guy who comes regularly to take kids and teens to movies, it was really fun for the kids.  Daryl had lunch with me and Esther (we got to take her with us, and she love the walk, falling asleep by the time we got there), and then after lunch we were surprised by a visit from my brother Tom!
Here's a great photo of Esther with her Daddy - she was very talkative, and enjoyed telling Daddy all about her day:


He drove all the way from Port Angeles just to see us and bring some Christmas cheer!  He brought two beautiful nativity scenes that are lit from underneath with a changing color light, some chocolate for me, candy for the kids, and a couple books for me to read!  What a great brother, eh??

Daryl came over with ther 4 youngest this evening, as the older kids had signed up for a shopping trip to Northdate mall.  We took them to eat at the cafeteria, which was new and fun for them.  Then we came back to the room.  They hung out watching TV while I got a shower.  Then they headed off for The House.

Oh - and a really cool thing...Esther has discovered her hands! She waves her right hand in front of her face, moving her fingers, watching it with great interest! It's sooo adorable! I got it on videotape today, I was so happy to capture it on film!

Her surgery has been rescheduled for Friday, but right now we don't have a time. I'm feeling really good about the surgery since she's looking so much better!

It's really a balancing act with her though - she's coming off being dehydrated, but if she gets too much fluid, she can easily go into heart failure! So please pray that they can manage her fluids between now and her surgery so she's in great condition for the surgery!

Tomorrow is Christmas Eve, and looks to be a very exciting day, but the cruise was canceled due to weather conditions. But they plan to do all the activites they had planned for the cruise at The House in the kitchen instead, so it will still be a nice afternoon for the kids.

We are planning to get a family photo either tomorrow or on Christmas Day so watch for that here!

Please pray that she will be protected from getting any new bugs between now and then, so it can happen as scheduled, as our reservation at the hotel ends on Saturday!

Thanks for all your comments - that is the best way for me to get a lift in my day!

We're out of ICU!

This is Jessica, and I am giving you all a message for my mom. We were moved back to the floor at noon and are now next door to where we were before. It looks like the surgery will be this weekend or early next week if she stays healthy. Mom will be blogging with more information tomorrow!

It's starting to feel like Christmas

Today is was snowing all day - really pretty snow too.  The kind that clings to the trees.  For a while the snow looked like the fake snow in movies, it was so perfect.  For a while it was huge flakes meandering down, and later it was tiny flakes screaming down.  A little bit of everything!

After staying with Esther all morning, Daryl came over and we had lunch together.  Then we check on Esther again and got to talk with her cardiologist (the on working the CICU today).  She had a bad de-sat while I was there, and the Dr was on the phone.  She bottomed out to 50% O2 and just stayed there - she was looking a little blue even.  The nurse turned up the O2 until she came back up.  Esther had mistakenly been left on O2 at 30% all morning -she's not supposed to have O2 as it causes over-circulation due to her heart defects.  So once they took it off, it took hours for her body to adjust.  She kept desating every few minutes.  The Dr said to not give her Oxygen unless she stayed below 70% for more than 5 minutes.

After about an hour of repeated desatting, she finally started to stabilize and dropped to doing it only once in a while.  Now the drops are lower and shorter in duration, so that's a good trend.

Most of that happened while I was with my family.  I feel a little guilty now for leaving Esther, but she had not woken up at all yet.  She hasn't opened her eyes since early yesterday.  I miss her bright eyes and smile!  She's actually mildly desatting now, but only down into the 60s and it only lasted about 15 seconds.  She just woke up while I was editing this paragraph, and complained for a while, so I got to hold her and we had some nice cuddle time.  Then she fell back to sleep and is sleeping peacefully in her bed now.

So what was I doing while I was away?  I was doing some very important activities!   First we celebrated Elizabeth's birthday (it was the 12th), and she got a little ark and play animals/people.  She loved it!  Then we had cake,  and sang "Happy Birthday" to her - she just ate it up!



We had a little boy that Rebekah got to know yesterday join us for this, but he told us "I can't have sugar or unsaturated fats" - he's just 5 years old and it was soooo cute! He has had cancer twice now, and by eliminating certain foods, the likelihood of the cancer returning is reduced. I asked if he could have an apple, and his mother OK'd that, so he enjoyed an apple while we ate the cake. Then he took a deep breath and said, "I love the smell of cake" - how sweet is that! You can see this little guy sitting next to Dayton.

Then Jessica started wrapping the goody bag gifts (she loves doing this, I just hold out her items and she does the rest), while I mixed up the cookie dough and helped the kids cut out the cookies.

Then once the cookies were cooked, we started decorating:

They had a lot of fun, but I had to go up to the room and put my foot up - the shopping yesterday, and then baking today made my foot intensely painful. I laid down and took a short nap, and then returned to the hospital.
So I had a great day, and I'm so pleased that Esther is looking and acting so much better. All her stats are improving, and her diarrhea seems to be nearly gone - her last poopy diaper looked almost normal!
Now we are trying to find out about her surgery, and if she'll be going back to the floor, or stay in ICU until surgery. They are not full now, so that might be the case.

I just found out that she will be going back on the floor tomorrow - that's good and bad.  They were threatening to take my sleeper
Well, that's all for tonight! I'll blog again tomorrow and hopefully we'll have a good idea of when she'll be having her surgery!

Down Syndrome and probability

So how does our beliefs effect how we look at Down Syndrome and birth defects?  It really changes everything

We believe that God has created Esther exactly the way He wants her to be. The way we needed her to be.  She is a precious gift from God.  She is exactly what God saw as best for our family.  I wouldn't have her any other way.  God is working in our family through her and her circumstances.

We have known that as we got older, the "likelihood" of conceiving a baby with Down's Syndrome was increasing, but the way I see it, "probability" is only telling us how God has worked in the overall scheme of things in the past, and God is not controlled by our statistics!  He could easily choose to never create another baby with DS, or He could choose that all babies be created with it.  God can do anything, but He chooses to do things in order to bring about His good will in our lives.  His will is for us to grow in grace and truth.  For each of us, this is done differently, but for each of us this is done in the exact way that we need it to be done.

All the parents I have talked to who have special needs babies say the same thing...our baby is just what we needed as a family.  She/he has blessed us beyond anything we could have imagined.

Is it easy?  No, it's not easy.  But then, God doesn't promise that we will never have pain, or sadness, or discomfort.  But He does promise that He will never leave us or forsake us.  That even when we go through the deepest valleys, He is with us to comfort us and guide us through the storms of life, and all He asks of us is that we trust Him, love Him, and praise Him.

Psalm 139:

1 O LORD, You have searched me and known me.
2 You know when I sit down and when I rise up;
You understand my thought from afar.
3 You scrutinize my path and my lying down,
And are intimately acquainted with all my ways.
4 Even before there is a word on my tongue,
Behold, O LORD, You know it all.
5 You have enclosed me behind and before,
And laid Your hand upon me.
6 Such knowledge is too wonderful for me;
It is too high, I cannot attain to it.
7 Where can I go from Your Spirit?
Or where can I flee from Your presence?
8 If I ascend to heaven, You are there;
If I make my bed in Sheol, behold, You are there.
9 If I take the wings of the dawn,
If I dwell in the remotest part of the sea,
10 Even there Your hand will lead me,
And Your right hand will lay hold of me.
11 If I say, “Surely the darkness will overwhelm me,
And the light around me will be night,”
12 Even the darkness is not dark to You,
And the night is as bright as the day.
Darkness and light are alike to You.
13 For You formed my inward parts;
You wove me in my mother’s womb.
14 I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
15 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the depths of the earth;
16 Your eyes have seen my unformed substance;
And in Your book were all written
The days that were ordained for me,
When as yet there was not one of them.

This is such a wonderful passage.  God will go with me no matter where I go and what I am going through.

This passage also wipes away fears of death.  "The days that were ordained for me"...this means that our life span is in God's hands, and there is nothing anyone can do to rob us of any of the days God has planned for us.  Many say when someone dies young, that they were taken before it was their time, and other ways of describing the death of a young person indicating that his death was untimely, too early.  But I believe that death comes in God's timing - it's only a surprise to us.

Each life has a purpose, and that purpose might be fulfilled in a short amount of time, or in a long lifetime, and some are even fulfilled before they are born.  Johanna Marie was our little girl that never took a breath.  She died in my womb at just 20 weeks gestation.  Was her life cut short because of pesticides in the field?  No, she lived out the exact number of days that God had ordained for her - and her short life impacted our lives and served it's purpose in us.

How does this effect my thoughts on Esther?  She's very sick right now, this sickness could be "unto death".  She's also facing open heart surgery.  This could also end in her death.  but that is in God's hands.  Whenever I start to worry and grieve, I try to remind myself that she is God's child, given to me for a time, and whether it's a short time or a long lifetime, I must treasure each day I have with her and learn all that God is teaching me through her precious life.  Does that mean I never cry?  Of course not.  I love her.  I want her to survive and live and teach us.  But above all I want to learn to trust God, even with the lives of my children, because when I trust God, I can be at peace.

A young man I grew up with, felt that his death was imminent - he was going to be leaving for college soon, and he had planned to fly, but in light of his feelings, he choose to drive with a friend instead.  Before leaving, he wrote a will and planned his funeral.  About halfway to college, for an unknown reason, the car flipped and he was killed.  His friend, who was driving, walked away with a few bruises.  For some reason, God let him know that "his time" was near.  Yet he was young and healthy.  Taken before 'his time'?  No, he was brought into the presence of His Lord and Savior at the exact time ordained for him.

Probabilities...chances...likelihood...life expectancy...all words that do not take into account God loving, sovereign will in  lives.

Psalm 56 11 In God I have put my trust, I shall not be afraid.
What can man do to me?

A good night's sleep!

Both Esther and I got some much needed sleep last night.  Esther's IV was leaking when I went to bed, but they found it was the IV itself (the connection part to the lines) was what was leaking, so they didn't take it out, but they placed a second IV in her scalp for giving her replacement fluids (every time she has diarrhea, they weigh her diaper and give her that exact amount of this replacement fluid over the next 3 hours - it replaces the fluid and nutrients that she loses through the diarrhea).

She's still sleeping like a log, and there's nothing for me to do (no TV either), so I've got time to blog!

I slept for a total of 9 hours last night - it's been weeks since I got that much sleep in one night!  I did have to get up a couple of time to use the bathroom (I got dehydrated on Friday, so I was trying to get back on top of things yesterday and paid for it over night!).  But I was always able to go back to sleep quickly.  I had forgotten how stiff those beds in the caves were though!  On my second trip to the bathroom, I snagged a fourth pillow, and that really helped out as my hips/legs were getting sore.

We got about 4 inches of snow overnight, and it's the really pretty snow (sticking to the trees), but it's not going to make traveling very easy.  My sister, Lisa, was supposed to fly in this morning, but I'm not sure if she was able to or not.  Also, there's the funeral tomorrow - unless the roads are really worked over, I'm sure there's many who would have wanted to attend who will be unable to.  Even though Esther's surgery has been postponed, it's just not worth the risk to drive over 120 miles in this weather and bad road conditions, so I'll be missing it anyway.

And my Pollyanna thought for today - now that she's on IV clear fluids only, I'm getting ahead with my breast milk!  I've got over 200 CCs in the fridge!  Yeah!  That means once she can get back on breast milk, then she'll have a great supply and not have to have all formula at all for a  while!

Here's Esther this morning - sleeping peacefully while Fruit Loops and Pink the giraffe keep vigile - they can't wait until she's batting at them again!



Daryl is planning to attempt to come to the hospital, and if Esther's still resting, I might go over to the House and make Christmas cookies with the kids.

The kids and I have signed up for the Christmas Eve Cruise!  All the Ronald McDonald House families get to go on a 5 hours Argosy Cruise in the Seattle Harbor - including dinner! You can read about this here:

Argosy Christmas Ship

We also found out that all families are to be out of their rooms Christmas Eve afternoon so that Santa can make his rounds.  I'm sure that this is the only place in the world that you know exactly when Santa is arriving to deliver presents!  LOL!

We don't celebrate Christmas with Santa - we celebrate Christ's birth.  We don't condemn others for using Santa in their Christmas, we just have never presented Santa as being a real person (yes there was a Saint Nicholas, but the modern Santa has little to nothing to do with the Saint of old!), but instead we choose to put all the emphasis on Christ and His miraculous birth.  We also thought that if we presented Santa as real, and God as real, but when they got "old enough" that they'd have to find out that Santa was not real, then they might also question whether what we said about God and Christ Jesus was real as well.  Also, we always try our best to be truthful to our children so that they can always trust that what we say is truth, but if we presented Santa as real, we would, in fact, be lying to them and that was just not where we wanted to be. The kids have been handling all this Santa stuff really well - I'm so proud of them.  They've fielded the questions asked, without being condemning, and they get a kick out of all the Santa stuff going around.  We present Santa as a fairy tale story, and we enjoy the Santa movies, we just don't present it as real.

We have "goody bags" that the kids get on Christmas morning, but they are from us.  Because of the size of our family, we don't give the kids "big gifts", just little fun things in their goody bags.  Jessica is sewing new goody bags this year, and they are turning out beautiful!  Our tradition is that on Christmas morning, the kids can't get out of bed until Daryl or I come and get them - then they all pile into our bedroom and as many as can fit climb onto our bed, and mayhem begins!  It's sooo much fun for everyone!

The kids started exchanging names a few years back, so that's fun for the kids as well.  A few of them still need to get their shopping done, and hopefully the weather will allow they to do that this week!

I'll update later today if there's any changes.

Esther's in ICU

Esther celebrated her 3 months old birthday by getting really sick and going to NICU.  The gal just doesn't understand how to party!

When I woke up with Esther at 4 am, I though her IV looked bad, but the nurse said it flushed OK, so I went back to sleep once she was asleep again - I had been up with her until midnight so I was plenty tired.  She didn't look good at all when I got up, and got worse.  Then I noticed that my pant leg was wet where her IV had been laying.  Uh oh.  So the nurse called to have the IV team come stat as she was starting to look dehydrated.

Here's some photos of Esther yesterday:




Then she checked her blood pressure and it was only 40/20 (it's usually 80/40), and she was looking worse by the minute - kind of pale and really sick looking.  So the nurse ordered the team that takes urgent needs, and soon there was 8 people working on Esther.  Esther was severely dehydrated.  The combination of diarrhea and lack of IV fluids (possibly for hours) had taken it's toll.   I started packing - I knew she was going to ICU.

After putting in a new IV in her scalp, and the pumping 60 CCs through it, they moved her into NICU, and continued to pump more into her - they wanted to put in a total of 120 CCs as fast as they dared to do it.  She looked so sick, but her color was better already.  She would have been in the CICU (Cardiac Intensive Care Unit), but they were full, so she ended up in NICU with all the tiny babies. Some of the nurses remembered her from October, and so did one of her doctors!

We stayed with her for a little while, and then once we knew she was resting comfortably, Daryl and I headed out to get the last of our Christmas shopping done before the big snow hit.  They planned to put her on C-pap - a device that forces her to breath, using room air.  But she hated the thing on her face, so now they are just using a nasal canula to force air in so she doesn't have to work so hard to breath.

We got back to the hospital just as the snow started.  We went and spent some time with Esther.  I got to hold her and she was telling me what a rough time she had been going through. Serious complaining was going on.  She wasn't really crying, but being very conversational and definitely complaining.  It was so cute! We got it on video tape, so the kids will get to see it too.
Here's her complaining to me:



Then they were going to place a Foley catheter in Esther to catch urine so they could differentiate between urine and diarrhea, so Daryl and I headed over to the Ronald McDonald House to have the kids open their gifts from Grandma and Grandpa Einfeld. There was a game for each kid, and that should make the next few snow days more enjoyable!

Then we went to the kitchen, as there was a group, Medical Meals on Wheels, or something like that, was making a dinner for all the families at RMH! We had chicken, rice, corn, a salad, a roll, and jello salad - a nice, very home-cooked style meal!
Here's some photos I took of the kids in the kitchen area tonight:



I also took this picture of the Christmas preparations going on in their room - Jessica is sewing new goodie bags for all the kids - and even cross-stitching their names on the while fleece cuff! They look marvelous! Thanks Jessica~!

After dinner, we had the boys pack up some food in case they get snowed in at the hotel, and then left - I got dropped off at the hospital and Daryl drove the boys to the hotel. I'm sure the bog boys will soon be setting up a long game of Axis and Allies! Jason's wanted this game for years!
I came to see Esther and since she was sleeping, I returned to my "cave" to pump and blog!
Now I'm off to see Esther for a while before I get a GOOD NIGHT'S Sleep - after all, that's the best part about having your child in ICU - they are really well taken care of, and sleeping in the caves makes for sound sleep - no lights, beeping, nurses coming in etc! I'm going to make the most of it!
Please pray that Esthers diarrhea will clear up fast - she's still losing fluids through the diarhea, but her IV is keeping pace with it now.
And her surgery has been postponed until she recovers from this.
Talk to you tomorrow