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 all 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

Esther's doing better

It looks like she's got a gastro-intestinal bug.  Fever and diarhea, and the fever is coming down.  She's looking better as well.  She's still got the diarhea though.  Now instead of worrying about fluid retention, she's getting close to being dehydrated.   She's lost 1/2 of a pound in 24 hours.  So far all her test have come back negative - but some haven't in yet.

I got to go shopping with Jessica while Daryl sat with Esther, and then we all went to get dinner and checked the boys into the hotel.  It's a nice hotel, so we were pleased about that.

I'm busy holding her so my post will be short tonight