16 days old and best yet!!!

Skye gave us a scare yesterday, but she is stable again and as best as she has been yet!! Praise God.

So, she had successful surgery on Tuesday (intestines, stomach & spleen moved back to abdomen & diaphragm patched), came off ECMO on Wednesday and had a good Thursday.  On Friday they started removing the meds she was on and her body did not like the idea. 

She started having a really hard time breathing and the gasses in her abdomen were not helping or contributing to it.  They had the current breathing machine maxed out, but there was a different breathing machine that puts the oxygen in harder and faster.  This has worked!!!  So, she is currently on this new machine (not maxed out) and the meds are up again. I think they are going to try a slower approach and when she can come off this new machine, a lot more progress can be made.  But, the nurse today said that she is stable and doing well.  We hope to have gradually increases and if any only slight set backs, not huge up and downs, like yesterday! She is not a candidate to go back on ECMO, so let's pray that it doesn't go back that far.

I went down and spent some time with Coral and Skye.  Skye was awake!  We spent about an hour+ in her room, then went and got coffee at Starbucks on the first floor and then spent another 1/2 hour+ with Skye again before we both left for the double birthday party at my parents.  I think Coral had a good time and appreciated all the kindness from all of you that were there.  She is feeling the love!!

Here are the pictures from today; 16 days!

Look at her holding on to Mommy's finger!!

Set back

Skye has been doing really well up until mid day today.  At some point today she started having problems with her breathing.  They switched her breathing machine late this afternoon around 3:30.  Then at about 6:30pm I got a text from Coral that said she is having a really hard time with her lungs and they are trying everything they can to help her. They are worried about her.  Please pray for her! 

She said she didn't need me to come down tonight, but I told her to contact me day or night if/when she needs me, so please pray that she will do that if it ever comes to that.

Off ECMO!!!!!!!!!

That's right, Skye is off ECMO!!!!!! 

It is so exciting and such a big step.  She has been doing well since getting off it today.  The only issue is high blood pressure, which needs help, but otherwise it's going well. 

Now lets just pray that she doesn't have to go back on it!  Praise God for another good day and milestone.  :)

Surgery Day!

A successful surgery was performed today!  Surgery started about 11:30am and got done about 3pm. 

I don't know all of the details of what exactly went on during surgery, but my understanding is that the surgery was to put the out of place organs back to their correct place, like her intestines were up by her left lung.  The surgery was also to patch the hole in the diaphragm.

I'm sure we'll find out more specifics on what they found out during the next days/weeks.

Coral did say that everything looks alright and she did well during surgery.  And, she might come off ECMO tomorrow!

Praise God for a successful surgery! 

Good trial today!

The trial test they did this morning went really well so they might do surgery in the morning. 

That's all I know today!

9 days old!

I got to see Skye today!  She is looking good.  She was even awake for a bit when we were there; such a precious little girl!  She is still stable. 

They changed the circuits yesterday on the ECMO lines.  This is something that has to be done periodically, and having it done for the first time at 8 days on it was very good the nurse said.  The longer the better, and 8 days is pretty long.  Sometimes it has to be done at 3-4 days.  They need to be changed because of build up, oxygen and clotting. 

There is a transition period after they are changed so the next couple of days or so will hopefully be uneventful.  Then they can start testing her again for surgery. Once they get in there and can see exactly what is going on (how big the left lung is, how big the hole in the diaphragm is or if it is completely missing, etc) will give the docs a much better picture and idea of what is ahead.  The nurse was explaining this to us today a little bit.  A bunch of variables play into everything, so it is not necessary super bad if one comes back on the worse side if something else isn't as bad, if that makes sense. Often times one of the problems is pulmonary hypertension (I think that is what it is called), where the blood vessels around the lung shrink down and squeeze  the lung, so even if it starts to get bigger the tightening of the vessels prohibits the growth.  So she is on meds, Viagra to be exact, to hopefully stop this from happening.  It increases blood flow to the vessels in hopes of keeping them loose....That is just a little of what the nurse talked to us about today.

I then took Coral and her mom to the grocery store and then took her mom to the train station to go back home.  So now Coral is here by herself, so please pray for her.  I am going to hopefully go and see her every weekend and sometimes take her somewhere to get away from the house/hospital area.

Here are the pictures from today!

Our sweet angel!

 She was awake today!

These are just some of the machines monitoring Skye!

Mommy!

Grandma!

In God's time!

No surgery today.  The "numbers" were not where they were supposed to be.  I was actually kind of surprised that they were even talking about surgery already.  Last Sunday the nurses woudn't talk about it and the general explanation was always at about a couple of weeks or so maybe.

I plan to go visit tomorrow.  I plan to take Coral on some errends to get groceries, etc, visit Skye and then take Coral's mom to the train station in Everett to go back to Montana. She hopes to come back periodically too.

That's all for now!

Next Test!

The next test trial off ECMO is early tomorrow morning between 6:30-7:15am.  If it goes well they might do surgery that afternoon!!!

That's all I know today.  I'll briefly post during the day on my facebook post when I know something and then here when I get home tomorrow.  Pray!

First test

Today Skye had her first test. This consisted of stopping the ECMO machine to see how she would do.  It will help them determine when to take her to surgery. 

I'm not sure how long this "test" lasted. She did well, but her blood pressure kept dropping so they are going to try again at some point.

Other than that, no new news to report!

Ethan made it back to Montana yesterday morning.  We're hoping he can work for a bit and save up his "weekend" time and come back for a visit.

Ronald McDonald house

This afternoon the 4 of us went to the Ronald McDonald house to spend some time with Ethan before he leaves tomorrow.  Coral, her mom and I went first to see Skye.  She is the same.  There may not be much to report this week, so it could be a few days or sometime later this week before I have anything else to report.

Meanwhile the boys hung out at the house and we stayed some more after we came back from the hospital.

It appears that the original birth weight from Ethan was slightly off, according to the nurses, her birth weight was actually 4 pounds 15 ounces, so that is almost 5 pounds, much better!

Mr. Ronald McDonald at his house!

Ethan and his nephews!

 2 sets of brothers!

Saturday 9/15 update

We got to see Skye again today.  We went to spend some time with Ethan and Coral and to also take Coral to see baby.  Luckily, security at the hospital takes them back and forth from the hospital to the Ronald McDonald house upon request 24 hours a day!  The house is just a few blocks away, but that is still not doable after a c-section, and there is a hill involved!

Skye is still stable and in the acceptable ranges for all the monitors.  Her heart is operating better than it did yesterday.  They do ultrasounds every day or every other day on different areas to check how she is doing as far as the ECMO goes.  They adjusted the ECMO line after seeing that it wasn't quite in the right place, and this made her heart much happier.  I guess it was putting the blood right back to her heart instead of into her body, so now it is putting the blood into her body.

Her intestines are up in the area where one of her lungs is supposed to be.  They think that lung is small, they just don't know how small yet, so please pray that it isn't too small or that it has a chance to get better. I don't know how all that works yet.....

We plan to get together with them again tomorrow afternoon to just hang out at the RM house and we will bring the boys with us because Ethan was wanting to see them since he has only seen them a couple of times! What a good uncle! :)

Unfortunately, Ethan is going back to Montana Monday evening.  He hopes to be able to visit periodically, but work obligations and the money factor are calling. Fortunately, Coral's mom is here to next weekend.

Skye is one sick little girl, so we really need a miracle, but nothing is impossible with God!

Birth Day Pictures!

Today was another stable day for Skye, which is a good thing, nothing to report! And, Coral just got discharged from the hospital this evening so she gets to go see her baby!!!

Here are the pictures I took when visiting for a few minutes before the ECMO was added:

Here are the pictures I took when visiting again in the evening with Ethan.  Ethan is a natural, he went immediately to hold her hand, so sweet! The big red tube attached to her neck is the ECMO line, taking her blood out, cleaning, oxygenating, and sending back so her heart and lungs can rest.

Stable

Today has ended on a good note.  Skye is stable!

I went to see baby today at about 1pm.  I got to see her for about 15 minutes or so and then the ECMO team was ready to start the process.  So, then I went over to UW Hospital to see Coral.  She was still pretty tired and a little groggy, but doing fine.

ECMO is basically a heart/lung bypass machine that lets the heart and lungs rest.  The procedure to put it in took about 2.5 hours the nurse said, and went just fine.

This evening Bill wanted to see Ethan and the baby, so we dropped the kids off at my parents (thank you!!!!) and picked up Ethan and went to see Skye.  While there, the nurse explained a lot of things and even showed us what each of the lines attached to her are for.  There are soooo many tubes/lines/whatever you want to call them in her tiny little body!!  From the big ECMO line in her neck, to oxygen monitors on her kidneys and brain, to blood pressure, feeding, breathing, catheter, and many more!   We then got some dinner with Ethan and went to see Coral.  She seemed to be doing even better this evening.  She said they are going to have her try and walk this evening. She's doing about as best you can expect after having a c-section and not being able to see her baby! :(  She eagerly looked at the pictures I took from my camera.

So, meanwhile there are 2 nurses in her room at all times, the regular nurse and the ECMO nurse.  They basically are monitoring all the things and making recordings.  There is not much touching of baby because they don't really like it at this point, but they do when needed to move her, etc.  This will hopefully stay uneventful for a week or so.  Then they will start "testing" her by diminishing some of the "help" she is getting to see if her body can handle less help.  This will hopefully lead up to a surgery to repair the diaphragm and rearrange her organs at maybe around 2 weeks.

Tomorrow, I'll post the pictures I took today here on the blog.  It's late and I am tired!

Otherwise, I'll post a blog when there is something to say, you can assume that if you don't here from me on here, that everything is stable and no changes to report.

Thanks for all the prayers.  We sure can all feel them.

Aurora Skye Hunter-Phillipson is here

She was born at 2:30am via c-section weighing 4 pounds 4 ounces. At about 1:45 they decided to do a c-section because baby couldn't handle the labor.

At about 5:30am Ethan texted me that she is very sick and going on ECMO, a heart/lung bypass machine and it's not looking good.

It's a go!!!

I am writing this at about 9pm and Coral is in labor!!!!!!

They got to go to the hospital about noon today.  At about 5pm she was getting the petosin medication to start labor.  At about 8pm I asked if she was feeling it yet.  Ethan said that Coral said no, but he could see it in her face.  So, that means contractions are there, just not that bad yet!

This probably will be a long night for them. For me personally when induced with Shaun, it was about 14 hours from first petosin to birth.

I will post an update around 6-7am tomorrow unless I haven't heard anything.  Check my facebook post during the day for brief updates, and then I'll post a detailed blog post here in the evening!

Thanks for all the prayers!!  This is all in God's hands and He knows the big picture.

.....and waiting.....

It's a no go again today.  The hospital is too full.  She will go in for a stress test tomorrow if  they can't get her in then.  It's a waiting game at this point....I'll update again tomorrow!

Still waiting....

They were instructed to call in to the hospital at noon today instead of going in first thing.  Then they had to wait for a call back after they called in.  They were too full, so they have to call back tomorrow.  That is all the news from today.  I'll post another update tomorrow!

It is about 8pm and I just got home.  After work, I pulled in the driveway, switched cars and took Shaun (with Logan) to swim class.  Then we went to playgroup right after.  It has been a long day!

Seattle!

No really update on baby except that the induction is still scheduled for Monday morning.

However we have done the tourist thing in Seattle!  Last Sunday, Bill took Ethan and Coral to see some sights.  I stayed home with the boys because they had slight runny noses and Logan would need a nap, and so we scheduled the activities that were less kid friendly.  Bill went to church and then met Ethan & Coral at Northgate Transit Center. They then took the bus to Westlake and had lunch at the food court.  Then they took the Monorail to Seattle Center and went to the top of the Space Needle and then to the EMP, Experience Music Project.  We have never been to the EMP; Bill said it was pretty neat, from displays of the origin of the guitar to an Avatar interactive exhibit and much more.

After the EMP, they took the Monorail back to Westlake and then went back down to the tunnel to catch the bus a couple of stations to Pioneer Square where the underground Seattle tour is located.  Again, we have never gone on this tour before and Bill said it was interesting.  It showed and explained the history of Seattle and how after it burned down, it was rebuilt and then the street/ground was moved up a floor to accommodate being built on a marsh right by the Sound.  I would like to go on it someday too; when the boys are old enough!

They then took the bus back to Northgate and then Bill drove them back to the Ronald McDonald House.  They all were pretty pooped after this.  They originally met at Northgate at 11:30, and Bill didn't get home until 8pm!

Needless to say, Coral needed to rest up on Monday, so they did not come with us when the 4 of us went to Seattle for our Labor Day adventure.  We took the bus again, and then walked to the water front and went on the new Seattle Great Wheel.  It just opened at the end of June, so is a brand new attraction in Seattle.  It was a fun time for a Ferris wheel ride!  Then, we had lunch, and then did the "Ride the Ducks" tour.  This is a vehicle that can go both on the street and water and took us on a tour starting at Westlake, into Lake Union and then all over Seattle, lasting 90 minutes.  We had never done it before and was fun!

The boys were so good!  We were gone most of the day, so Logan did not get a nap, but was soooo well behaved the entire day; I was really amazed.  A kind gentleman that we talked to for a few minutes while waiting in line at the Great Wheel asked if Logan was always this good, I said no! But, that was at the beginning of the day, so wasn't too amazing besides the fact that we had to wait a bit in line.  He calmly sat in his stroller, which is not like him!  :)

Bill is working this weekend, but I am going with Ethan and Coral back to Seattle so they can see the Pike Place Market and the Great Wheel. This is their last chance to have a little fun!

Pictures are on Facebook or via the link at the right under 'September 2012'!

Be praying for and on Monday.  I'll post an update when I get home on Monday, which may be later if I am able to visit baby and Coral.