I'm so sorry for the long delay in updating! Life has moved into the fast lane, that's for sure! Here's a long update for you all!
First, here's some photos I wasn't able to put in here before - here are some that were send to me from my first special care nursery bossom friend (yes, that is a pun!), Lindsay - Esther's Grandparents came for a visit and my camera was at home, so she took these photos for me:
And here's a photo of Esther's first friends - they are the cutest twins I've ever known! And look at those adorable outfits! Those were Elizabeth's when she was so tiny - but since Esther was so much bigger, she decided that they could use these ones!:
And here are the three of us moms with our special babies - the three of us would laugh as we planned a reality show about moms in special care nursery - I think I blogged about that back then...I still think it would make for a great TV show! And I think you can see why the nurses kept mixing up us moms (you've heard of mixing up babies, but in our case it was the moms they kept getting mixed up!)
Don't we look happy together! We did have a great time bonding and I we are planning on a reunion once things settle down for us all (all of us are home with our little ones now, praise the Lord!!) Notice all the babies have cords??? It's so nice to not have cords on Esther all the time now!
Thanks so much Lindsay, for sending me those great photos! You might notice in the last phot how pale Esther is - this was taken just hours before she left for Children's and was in the early stages of heart failure and it shows in this photo.
Starting the middle of last week, Esther developed some sinus congestion and a low grade fever. I never take my kids to the doctor for anything but broken bones and severe illnesses, but with Esther and her fragile health, it's all so new and frightening that I called and they wanted to see her. She was fine, aside from what I had observed, so we went home with "watch and wait".
By Saturday, she was not better, and a bit pale and lethargic, plus she hadn't gained any weight in 5 days as well as battling constipation. So in we went again - pretty much the same story, with the exception of increasing her volume of milk so help her with gaining weight again.
We were getting pretty low in the food department, so after the Drs appointment, Jessica and I hit Costco and Walmart - man was that ever exhausting!
Sunday, she was still running a low grade temp, so I didn't take her to church - we had a quiet morning at home with Dayton (he was a little under the weather as well, but nothing specific other than really grummpy).
Monday was our first "no movies or computer games" day - I declared that after so much time used on those "hobbies" while I was away, that is was time for a fast! Jessica and I had picked out some great books at Costco, so that helped ease the adjustment!
Monday was also our check up in Seattle, at Children's Hospital's cardiology clinic. But, of course, she woke up with a much higher fever - 101 degrees, so down to the Drs office in Bellingham once again - this time she had chest exrays as she had thrown up (not spit up) twice that morning - through her nose and everything, and Dr Monica wanted to see if she had aspirated anything.
She also checked with Children's to see if they still wanted her since she had the fever. They said, definitely, so we raced back home to get her supplies for the rest of the day, pick up Rebekah (I need someone to sit next to her in the car), and pump quickly and leave again. then go back to the Drs and pick up the exray CD, drop off the FedEx orders, and then head to Seattle.
The trip to Seattle went smoothly, and the appointment as well, although it took way too long! We got there at 3:30, filled out paperwork, got her feeding going, then she got weighed - she weighed in at 10 pounds even! Good gain again now! Yeah!
Then they did all the usual - blood pressure, temp (still around 100 degrees), and then the EKG (I've never seen one done) - man did she have a ton of wires attached to her - there were 16 wires/clips/stickers on her - her chest, tummy and back (there are at least 5 on her back that you can't see in the photo):
She looks a little worried, don't you think??
Everything looked good, and Dr aggreed with the feed increase, and also increased one of her medications, the heart medication, to allow for her growth.
The we went to the lab for a blood draw, and then to pick up prescriptions. But they weren't going to be ready for 30 minutes (it was 6:30 by now), so we went to ICU to look up her second room mate, little Ruby, but her mom wasn't in. Bummer, I really wanted to see how Ruby was doing!
Then we went to look up Esther's second room mate, a little baby girl from Pt Angeles, where my mom lives. She has an unusual name, which escapes me once again! But I did find her and her mother and was able to sit and chat for a few minutes - she was doing really well, but due to the type of surgery this little one had, they'll be there for at least 1 more month!
I even got a comment here from Esther's last roommate's, (Quincy- great girl's name!), mom, Erica (thanks for letting me know Quincy's doing so well, Erica! )Â so it's been a week of reunions of sorts!
After getting dinner at Dick's Drive-In (a land mark in Seattle), we finally got headed for home. When we were approaching Lynwood, the low oil warning started up! So I pulled into a gas station, and bought some oil, with the "help" of the attendant, we tried to get the hood open, but to no avail - couldn't get the "in car" latch to work - I even broke off the plastic part! After a frantic call to Daryl, and several more tries, Daryl suggested having the attendant push down on the hood while I pull on what was left of the lever, that didn't work either - I was about done in by then, when Rebekah got out of the car, and tried pulling the lever and easy as that, the hood popped open! Daryl had mentioned having the attendant push and release the hood, but by then he was talking to another customer - that was probably what made it work for Rebekah (he wasn't holding the hood down anymore), but we were all very surprised at the fact that Rebekah did in one try, what we had been trying to accomplish for about 15 minutes! But that was just the beginning - we had the hood popped up, but not open - there was yet another latch to find inside the grill. This took another 5 or so minutes - we were looking for something to pull to release the hood all the way, but when I finally found it, it was a push up! Then, finally, I found the dip stick and the oil filling cap, and after 1 quart, we were on our way (it didn't need much oil, probably the darkness of the oil (we were 3000 miles past oil change due to my being in the hospital with Esther) the sensor was probably confused!).
Finally, after one stop for dessert (I was getting drowsy) and a third round of the alphabet game (I couldn't end the night after losing to Rebekah twice!), which I finally won, we made it home around 9:30 pm. LONG DAY!
Tuesday, was flu shots for all - after working in the attic for a few hours (I needed find some school supplies, and we need to clean out the garage, so the attic needed to be organized to find room for the stuff in the garage!), we packed up half the crew and headed for the Dr's office (our station wagon only has seats for 8, and we had 10 at home) - only to find out the two of the kids hadn't been in to the doctors recently enough to be on their computer system, so they couldn't get shots there! So on round 2, we finished up those we could, and then I took Rebekah and Jonathan down to Bellingham and met Daryl so all three could get their flu shot at the walk in clinic (we got flu shots so we won't bring it home and give it to Esther). But I did get the bad news - since none of the kids have ever had the flu shot, they all have to have a second booster in a month, so we'll have to do it again then....ack!
Wednesday was more Drs appointments - this time for Dayton and Esther - Dayton was a well child check up and also trying to get a referal for speech assesments (which we did get) - and for Esther to review the findings at Children's and for her to get the immunizations I decided to get for her (only those prevalent in our community since she'll be more likely to be exposed to them by frequent visits to the doctor's and Children's and for her they would be deadly - this was a tough decision for us, let me tell you!). Wednesday evening I spent back in the attic finishing my organizing and got it done - Yeah!
Thursday was finally a full day at home! YEAH! I spent the morning working on laundry, decorating for Thanksgiving:
...and the afternoon was spent with the kids outside, burning the last of the construction/painting/mobile home take down wood/paper and cardboard. We got it all done, then in the evening the kids put the "good" wood (no paint or glues) on the coals and roasted hot dogs for dinner, and later marshmallows! The rest of the evening was spent by the kids doing a 3D puzzle of the capital building (Washington DC), while I took a long soak in the tub!
We also talked about inviting a family who doesn't have extended family in the area to our Thanksgiving celebration and decided to invite one of Jessica's friends from Karate - but that doesn't look like it will work out. So we are looking to invite a family in our area that is lacking family to celebrate with, and who is willing to dress as Indians (just a paper feather head dress and blanket will suffic) and we'll dress as pilgrims, play games, listen to stories about the first Thanksgiving, and give thanks for 5 things just before dinner is served - let us know if you want to be our guests!!
That brings me to today...you probably thought I'd never get here! LOL! This morning was spent on this blog and getting papers together for my tax appointment this afternoon, training a seamstress on a new technique, pulling our Esther's feeding tube because she had pulled it out halfway already and she needed a new tube placed by early next week, replacing said tubing, and trying to get to said appointment on time (I was 15 minutes late for some strange reason!)- then I got to go visit my dear friend, Sally (she has two special girls that I've come to love through the years), with a White Chocolate Almond Cranberry Mocha (super yummy - you should try it!) for me, and a Eggnog Mocha for her! She and her daughter,Taya, fell in love with Esther - we had a great time! Then I got home late (Daryl fed all the kids while I was gone), pumped for Esther, caught up on phone messages, returned 5 phone calls, had a quick dinner, got Esther ready for bed, and then started work on this blog!
Oh -and to answer a question from Jennifer - we really don't know how long she'll have her feeding tube - it depends on her. She has to be able to take all her nutritional needs by bottle, and right now she's only getting about 20% of it by bottle, if even that. She just gets tired too quickly right now because she swallows so much air due to un-coordinated swallow/suck/breathing. Her Dr at Children's guessed about 1 - 2 months, but I really have no idea as she hasn't been making much progress in this area - so please pray that she'll get stronger and better coordinated so she can get off the feeding tube!
Here's a photo I took of Esther during her brief, no feeding tube break today:
Can you see why I haven't been blogging much??? And some people think I shoud write a book - "in my spare time" - that's a hoot! LOL!!!
This is the only photo we have of her at home - just after this photo was taken we started to realize that she wasn't "pinking up" and we just weren't too concerned about photos at that point. She was quite "blue" in this photo, and from there she actually got darker - more of a dusky purple by the time she left for the hospital - that was a really scary time for all of us! 
This is how she looked when I arrived at the hospital - one very sick little baby. But she was pink - and that surprised me - I thought she'd still be blue for some reason!
And here she is, looking like a princess in her finest! She was only half awake, so she looks a little groggy yet! Today marks the last of my "stay at home and schedule my day as I want to" days for this week. Thursday morning I have an appointment for Esther, and then back home for a couple of hours, and then back to Bellingham to take Jessica to the oral surgion. Yes, if my year hasn't been hard enough, I also have two kids who need oral surgery! Jessica had a tooth that needed a crown last summer, but when they took off the temporary to put on the new crown, the entire tooth broke off at the roots! So we were face with a choice of a bridge or an implant - both are about the same money wise, but the implant was recommended since it's her molar and she's so young. So tomorrow she's having the surgery to implant a metal thing into her jaw bone. Once it has healed (3 - 4 months! Ack!), then they will put a new crown/fake tooth on the rod and it will look like it's her own tooth and if all goes well, it will be permanent. Please pray that she will not be worried about the outcome, that the procedure will "take" and not have to be repeated or abandoned. Please also pray that I will be able to get along over the next while (I really have no idea how many days she'll be under the weather from this) as I care for her and also lose her help around here! I also found out today that Jonathan's teeth have moved faster than expected and he is now ready for his surgery - he had a baby tooth that wouldn't fall out on it's own, and that caused the permanent tooth to remain in his "cheek" above his molars. So he had to get braces to make the opening large enough, and now they need to apply a "brace" to that tooth with a chain attached, and then the chain will be attached to the wire from his braces and it will pull the tooth down and into place! Ouch! Great timing - Jessica right before Thanksgiving, and my hunch is that Jonathan's will be just before Christmas! Happy Holidays anyone??? Also, neither of these procedures (or any of the orthodontist work on my three kids who needed it for medical reasons, and not cosmetic) is covered by any of our insurance, so I'd love it if you could pray that God will provide a way to pay for all this. We were able to get financing for Jessica's procedure, but I sure hate to borrow money for things like this! Friday, two women are coming over to work with me to set up and access programs for Esther - they are from the health department and the birth to 3 program. I'm sure they are wonderful women and they are coming to help me, but I just can't help being a little worried. Anytime I think of someone associated with government coming into my home, I get a little frazzled! Not the I have anything to hide, it's just that I do have a much larger family than most, and I just don't know what to expect. In general people are either positive about a large family, or very negative. Pray that I can have peace about this, and that the kids will be great while they are here! I'd really appreciate it! Due to scheduling problems, Esther's trip to Children's for her echo-cardiogram won't be until the Tuesday after Thanksgiving - I'm relieved as my schedule between now and thanksgiving is anything but open! Also, on Monday, Dayton is having some major dental work done - under light sedation. He had this done in September, and he was very upset afterward and had several hours of almost constant crying. This time it shouldn't be as bad (he had his top 4 front teeth pulled last time), but I am intimidated with the thought of going through this again, this time with Esther to care for, and possibly Jessica as well!
