We're off to Seattle

She doesn't have RSV, that's good.  The exrays showed good improvement, the blood gases look OK, but she's still working hard and breathing faster now as well - in the 80s and 90s.

So, they feel she needs to be at Children's - it was inevitable as of yesterday, it was just a matter of when, and they want her there as soon as possible in case these are signs that she is going downhill for some reason that they can't figure out - Children's has a lot more specialized doctors and equipment, so I agree that she needs to be there now.

I'll try to update tonight, and if not, I'll do it tomorrow.

Please pray for a safe trip in this ice/snow/wind and that the doctors can figure out what's going on and what to do about it quickly

Thanks!

Ruth

PS - I know you all love the photos, so quickly here's some I took this afternoon:
Esther and the respiratory therapists and her nurse - doing a breathing treatment



Here's a close up of the breathing treatment - she didn't think it was a treat!

Here's Esther mad! I haven't done many pics of her crying, as she doesn't cry much unless she's being poked or something like that. This was after a heel poke and she wasn't sad anymore, she was just plain ticked:

And this is Esther asleep with her hand on Toucan's nose - how funny is that??


Isn't she just soooo sweet????

How can you make each child feel special/loved in such a large family?

This is also a good question.  We've tried to find ways to do this, and I have to admit that the last few months have made this nigh unto impossible, but I will tell you how we've tried to do this under normal circumstances.

One way is to make their birthday a special day.  They get to pick what's for dinner, they used to get the day off from chores, but while I've been unable to do their chores for them, they get a "Saturday candy" for doing their chores instead (Saturday candy is a regular sized candy as a reward for doing all their chores all week and having them all done by 10 am on Saturday, including mopping/vacuuming the room they have).

We have tried to have great birthday parties, and in many cases the party is shared with one or two other =][/siblings who have birthday's nearby.  We let them invite over ar8 children and we always have a treasure hunt with rhyming clues to lead them all over our property in search of the stash of party candy (if you've ever done the cloth diaper hunt on my sites, you'll have experienced a taste of this, but without the screaming and running around).  We usually divide the kids into two teams, equally dividing the kids according to age and there are two clues at each location, one for each team.  After the treasure hunt we have a bunch of games like pin the tail, hanging donuts on a string and having them eat the donuts without touching them with their hands, some kind of tag, water balloon baseball was a hit this year, water balloon tosses, water pistol war, capture the flag, clothes pin drop and many more.  The winner get's three candies, second place gets two, and everyone gets one candy for being a good sport!

We also try to bring one child with us when we run errands.  This may mean taking one big kid and one little kid, especially when I was pregnant as I neede the extra help with the shopping.  This one we haven't been doing very well with this year, but I hope to re-instate it once things settle down with Esther.  I did take a different child with me each time I went to Seattle and we had a great time both times - I even got beat playing the alphabet game by each child!  I rarely lose, so they were both very excited that they beat mom!   Both times we also went to Dick's Drive In in Seattle - this drive in has been there for over 50 years and is iconic for Seattle - cheap, wholes hamburgers, fresh cut french fries, hand dipped hard icecream shakes and cones - very limited menu, low prices, and cash only!  It's just 3 blocks west of I5 on 45th st if you are ever in the area!

We also try to go camping at least once a  year.  Camping means less work, fewer distractions, lots of game playing, time around the fire - great memories that I wouldn't trade for the world!

We also encourage the children in their God given talents - we don't have them all take piano lessons, just the ones who show an interest in it.  So we have kids taking Karate, piano lessons, art lessons and in the past we've done violin lessons as well.  Each child can have one type of lesson if they want, but if they want to do more, they would have to finance it themselves as we are on a tight budget usually.  Daryl is also great at doing projects with the kids.  Today he's buildling an insulated dog house with Jessica out of building materials left over from our new home.  Last week he was working on cars with Jason and Jonathan.  He's made boomerangs, go carts from lawnmowers, recumbents bikes out of spare bike parts, and other fun projects!  He's an inventor of sorts and is very creative.  It's great for the kids and him!

I try to remind the children of things they've done in the past as well.  When the newest member of our family makes a milestone, like smiling or walking, I love to tell the kids when they did those thing..."Elizabeth, you walked when you were just 8 1/2 months" "Reuben, she learned to smile at the exact same age as you did - and she has the same dimple you had as a baby!"  I think this means a lot to the kids - knowing that I can remember things that they did at certain ages and such.

We also like to make Christmas as fun for each child as possible on a limited budget.  But that one is probably more family memories, than making each child feel special - but their identity is in a big way wrapped up in being a part of our family and doing things as a family that just wouldn't be the same if we didn't have everyone doing it together.  Being part of a big family is special too!  We all love to see jaws drop when we are asked questions about our family..."how many brothers and sisters do you have?"

So making your child feel special and loved is challenging whether you have a large or small family and it takes creativity and sensitivity - but mostly just being together is the best, as I've come to appreciate more than ever these last few months as I've been away from them all so much!

Rough night inside and out

We got quite the winter storm last night - here in Bellingham we got about 1 inch of snow, but it drifted making a few inches where the wind blew it.  We had serious winds and bone chilling temps through the night and today it's still windy and very cold - it's in the low 20's and with the wind chill it feels more like less than 10 degrees (F).  Here's what it looked like from my hospital window last night:



And this morning the sun is shining, but the flag is out straight in the wind - not all the time though, the wind comes and goes and changes directions all the time.


While it's beautiful, and I usually love the snow, the prospect of trying to get Esther to Children's with it looking like this outside is a bit concerning.  Today it's supposed to snow some more until early afternoon, then clear up.  Tomorrow and Tuesday are clear and cold, followed by several days of snow.  So we have this window of getting her down there.

Last night I didn't get much sleep.  It was 11:30 before I got to lay down to sleep, and then at 2 am I was up with Esther for a while.  Then I slept until 6 am and got up for get her feeding going and give her her medications.  She woke up so I held her for about an hour (got a few smiles and even got her smiling while I was videotaping her - first smile recorded in video).  She then fell back to sleep for another hour and I talked with our pastor and watched the weather forcast on TV, called home and made some plans for today.

I have not been able to get anything purchased for our kids for Christmas yet, for some strange reason! So if Esther stays here today, then Daryl and Jessica are going to come down here around 3 and Jessica will stay with Esther while Daryl and I go shopping and get that out of the way.

I was really not pleased with how hard and fast Esther was breathing this morning, so I asked for the respiratory therapist to come take a look at her.  She did some deep suctioning with a suctioning catheter and did get quite a bit of "stuff" out of her nose, but when all was said and done, Esther was still retracting a lot, breathing with noise, and nasal flaring badly which has me concerned as she should be doing better with this many Lasix doses.  The doctor called for new exrays, and they show her lungs are dryer and her liver is smaller - all signs that she's not going into heart failure right now and that lasix is doing it's job.  So it those are better, why is she working so hard???  One possibility is that she's picked up a new virus, and he's now sure what else it could be.  So he's ordered a blood gas test to see if her that's OK, and he's ordered a breathing treatment that should help.  It looks like her lungs are over inflated - she's drawing in air well, but it's not all leaving - this is common with asthma, RSV, bronchitus and such - restricted airways.  We should have those results quickly and with the blood gas results and how she responds to the breathing treatment, he'll call the cardiologist at Children's and see what they want to do with her.  Dr Thompson, I think, is leaning towards transporting her down there today, just in case this is the beginning of a turn for the worse that they can handle better at Children's than they can here.

I'll update as soon as I know anything, if we are staying here, or if there's time before we leave, if we are leaving.

I've been weepy today, so pray for me that I can lean on Jesus, and feel His care and compassion through this time of waiting and watching.

We are settled once again...

at St Joseph's Hospital.  We went to ER and they basically just did a quick evaluation on her and we waited for the peds to say they were ready.  When ER called up to the peds floor and described a "2 mo downs syndrome baby with VSD and ASD with signs up heart failure" (or something like that) their reply was "is this Esther?".  The ER nurse didn't know Esther and said she'd check - you know you've been in the hospital too long when they know your child by their medical description!

We have the same nurse that we had our first day at St Joes last week, but we have a different room.  Esther had continued to cough and was very fussy and cried easily while we were getting to our room and while things were getting settled in.  They tried to put an IV in her foot, they did get a blood draw they had needed, but the IV just didn't flush.  So they tried her head again, and it took a while, but in the end they did get the first try there to work. Poor Esther - getting IVs is so hard on her.

Then we went back to the room and she slept soundly after all that...so soundly that she kept having really low oxygen saturation levels and we even had to do some blow by.  Her cough was worse and she started looking just plain bad - really breathing hard, fast, and her head was really bobbing and her nostrils were continuously flaired.  By now I was so glad we brought her in when we did.  Then she got her IV dose of Lasix.

I told the nurse to check back in 20 - 3o minutes to see a new baby.  I told the doctor as well.  Almost exactly 30 minutes later Esther woke up bright eyed and smiling.  She was talking and just busting with smiles.  I called the nurse in and she was amazed.  So she had the doctor come in, and he too was completely amazed as the transformation that IV Lasix did for our sweet little Esther!  She was lively for about 40 minutes and is now sleeping peacefully.



She's got a little extra movement to her breathing yet, but  she isn't working as hard anymore.  I'm glad we are here now, and Esther will be staying here for now.

Monday her Cardiologist, Dr Kemna, will be presenting her to the surgeons and then we'll know when she'll be having surgery.  I believe that unless something changes, she'll remain here at St Joseph's until her surgery as they can continue to give her the meds she needs to remain stable.  At least that's now it looks from here.

We also got the good news that Esther's pediatrician is on call tonight, so we might get to see her.  I hope so, I so like Monica - she's so good with Esther and takes her time to make sure Esther's getting all the help she needs.

I took time and made up her bed so it's nice a cosey - a quilt she got here at St Joes while she was in the special care nursery, the blanket I crocheted for her, her giraffe and toucan from Children's, and her soft velour blankets.



I think I could use a nap as well - as soon as I'm done pumping (I'm multi tasking, you know), then I'll make up her bottles and try to take a nap (I slept from 11:30 - 2 am, and then from 4:30 - 6 am and then today was not exactly relaxing and stress free, if you know what I mean!).

Please pray the Esther will stabilize and that the surgeons will have wisdom in scheduling her surgery.  Also pray for my kids, especially Jessica, and my dear husband as they continue to have to keep things going at home without me.  And that I have a good night's sleep tonight!

Thanks for all your words of encouragement today and your prayers through all these long weeks!

We are home again - not!

We did make it home yesterday!  The coolest part was that my sister-in-law, Kim, called late Thursday to say that she was going to the Bellevue Children's clinic for her son, Joshua, early Friday afternoon and that she could pick me up after that - how cool is that!

It turned out really great as Esther got discharged and booted out of her room (they had no beds and kids needing them - they were very nice about it and set me up in a conference room) around 1 pm, and Kim showed up at 2 pm - Daryl couldn't have made it down there before 5 pm!  And that allowed us to get to Bellingham just after Daryl got off work, so we were able to meet him and I got to go get Christmas lights and candy canes (today we get our Christmas tree!), and still get home at a reasonable hour!

We have pizza and watched Prince Caspian to celebrate my birthday and Esther's home coming.  She was quite grumpy for the first hour or so - I think she was a bit overwhelmed by all the love/noise/craziness at home.  But once we all settled in the livingroom, she quieted down and rewarded everyone with lots of smiles.  And yes, she does have a dimple - the cutest little dimple in the whole wide world!

We almost didn't get to go home - Esther develped an eye infection yestday morning and she was retracting more than normal, but she wasn't breathing faster than normal for her and they really needed the bed, and it was my birthday, so they let her go home with strick instructions to watch her very closely, weigh her at least once a day, and if anything beging to indicate fluid retention/heart failure I have to get her to st Joe's immediately.  Also, she is not to go anywhere where she would come in close contact with the public as she's still battling this cold and her immune system is lower than ever.  So sorry, but she won't be in church tomorrow.

And lastly, the scary part.  If she does decline this weekend or anytime between now and Jan 5, she will be admitted at St Joe's and be on IV Lasix and they will be scheduling open heart surgery as soon as possible. If she does well, they will be scheduling her for the surgery early in January as at this point it isn't "if" but "when"

OK...big change - we are now packing once again and leaving for St Joe's - since I was blogging the above (my computer crashed and I coudn't get back to finish).  She has started coughing and retracting and her nasal flaring has returned.  I am so bummed.  We had a family conference and decided to postpone getting our Christmas tree until we knew whether or not we'd be spending Christmas together at home, or in Seattle.  Pray that we do the right thing.

God, I'm needing that grace right now big time - this is so scary!  I just don't feel up to facing this...

Back to packing.  Sigh.. I just talked to Daryl and I just can't stop crying so he's coming home to help me get packed and down to St Joes....

Thanksgiving Revisited

I know it's Christmas Season, but due to Esther's appt in Seattle and her being re-admitted unexpectedly soon after, I never got to post about our Thanksgiving celebration.



We have a tradition in our family of taking a few minutes before the meal to give thanks to God.  We place 5 kernels of corn (popcorn works) on each plate.  These 5 kernels of corn represent what the pilgrims had as their ration each day though the second winter in Plymouth.  Just imagine, surviving through a hard winter, a spring full of toiling to break new ground and build new homes, and a summer of tending the gardens and hunting on just 5 kernels of corn a day.  I'm sure during the late spring and summer they added much to that through berries and hunting, but that winter must have been so difficult!



We pass a turkey shaped basket around the table and each person says something they are thankful for as they drop each kernel into the basket.  We had some definite themes this year - our new home, Esther home from the hospital, jobs, mom's business, etc.  We have much to be thankful for this year, that's for sure!


Our Thanksgiving usually started at least a week before the actual day - we have been using the ThanksLiving box from Family Life Today.  This isn't available any longer, but it's  a great tool to bring the story of the first Thanksgiving celebration alive to the children through daily readings and activities. We weren't able to do this ahead of time this year, but Jessica started reading out of the Mayflower series to the kids just after Esther was born, so they had been reading about that first year in Plymouth for over a month already!


After our Thanksgiving meal, consisting of Turkey breast roast (I needed things to be simpler this year for some reason), home made mashed potatoes, gravy, corn, and potato rolls (each of the older kids made one part of the meal, and I did the Turkey), it was clean up and game time!  We played  phase 10 and then Risk - that kicked off a whole weekend of playing Risk.

We also enjoyed having Jessica's friend spend a few days with us. She hasn't been able to celebrate Thanksgiving for a long time as they moved away from friend and family a while ago. She is the only child still at home with parents, so I think she was a little overwhelmed with all the commotion and noise around the table, but I also think she really enjoyed it! Thanks for helping with the gravy!


So what was I thankful for?  My five things were:

1) Salvation through Jesus Christ

2) The perfect husband for me

3)  That Esther was home and doing well

4) 11 wonderful children

5) Our new home

And right now I'm so thankful that Esther is doing so well and most likely coming home today!

A smile that made my day!

I got this one after we both had a nap - is that cute or what!


Sure looks like she's feeling better eh?