The hardest day of my life.....

On October 27, 2012 at about 10:30pm, 6 week old Aurora Skye Hunter-Phillipson met Jesus. We are so sad to not have her here with us on earth anymore, but she is now healed and wrapped in the loving arms of Jesus. Beware, some tissues may be needed when reading this post.

About mid week she started taking a turn for the worse. They had to up her meds, the ventilator and then by Friday they had her sedated like I spoke of in that post. They couldn’t really figure out why or what was causing her oxygen and heart beat to go up and down. They had maxed out the oscillator and her oxygen levels were still really low. They said it would soon be time to make a decision. The actual decision was more as to when Coral was ready to remove the tubes.

I got the call from Ethan about 8:30pm Saturday night that the tubes would be coming out that night sometime. I headed right down there to be with them. When I got there Coral was sitting on the couch they had brought in the room holding Skye. She had been put on a different ventilator and a bunch of the stuff in her arms that had been placed there in the last couple of days, like some IVs I think had been removed. She was dressed and had a little pink bow in her hair.

We sat there crying together and just watching beautiful Aurora Skye for about an hour and a half. One of the docs came in to give his sincere condolences. He explained that researching the CDH disorder is his specialty, so he wanted Coral to know that he (and the other doc that had been closely working with them) were deeply saddened by this. He also wanted her to know that if she so chose, she can allow them to do an autopsy to hopefully learn something about what was going on in her little body and thus possibly help babies in the future with CDH. Ethan and Coral had already discussed this and have chosen to do so.

So, at about 10:30pm Coral said that she was ready and so they got the nurse that would turn off/unhook the ventilator. It was the simplest of tasks, yet so big. They then could take out the tube in her mouth and get the tape off her face and we could see her without any of that for the first time. What a beautiful girl! Coral then got to snuggle with her in lots of different positions. She was such a natural snuggling her baby on her chest.

About 20 minutes later the nurse came back in and listened for a heart beat. She didn’t hear one, so she got the doc to make sure, and then it was official.

It was now about 11pm and I went out in the waiting room to give her some alone time for a bit. I came back after 20-30 minutes and sat with them again for a little bit.

Coral was then ready to go, so she wrapped her up in the knitted blanket and laid her back on the table, and we said goodbye. The nurses assured her that they would take good care of her. Then was the long, quiet, tear filled walk through the hallways out to the car. I know this was only possible because God’s hand was on Coral the whole time; she was so strong.

I was also so impressed with one of her main nurses, Rhama. She was on the day shift, which works 7am-7pm, but was still there when I got there at about 9pm, and stayed until about 11:30pm because of them, so heart warming!

Bill was able to spend a few hours with them Sunday afternoon. I took them to the train station Monday evening. The boys met us there so we got to hang out with them for about an hour before the train came. It was sad all over again to let them go. We will miss having them around!  We all didn't think it would end so soon or so abruptly.  Coral said on Tuesday that it was weird being back home.  I hope and pray that they both will be able to grieve as necessary and get help in the process if they so choose.

Aurora Skye is in Jesus' loving arms!

Our precious baby niece, Skye, went to heaven and met Jesus last night at about 10:30pm. We here on earth are going to miss her so much, but I rest my hope in the fact that I will one day see her again where there will be no more pain and suffering! Please pray for Coral and Ethan as they grieve the loss of their precious baby girl. I felt honored and fortunate to be in the area and able to lend them support since they got here on August 27. I think last night was the most critical support time, and I was glad to be there. Love you both Ethan & Coral!

I will post another blog later this week with more details and some last pictures, but I'm not ready to delve into it all yet. 

6 weeks and fighting

Skye is fighting for her life. The docs say that there is a high chance that she won't make it. So, the hospital flew Ethan back today, he got to the hospital about 6pm.

I spent the afternoon at the hospital with Coral and Skye. They don't know what exactly is causing her downturn, but they are doing everything they can to help her. She is back on the oscillator at full capacity and still struggling. When I got there this afternoon she looked so different and pale. She is back on a bunch of meds including ones to keep her still so she doesn't get agitated.  Getting agitated hurts her numbers even more and they are so low now.  She is completely out and not awake because of the meds. There was a slight improvement in her numbers by 4pm when I left, so that was a little bit encouraging, but she is still the worst she has ever been.

They have prepared Coral to be thinking of making a decision if it comes to that point in the near future. This evening an organization that takes professional photos of sick babies came in and photographed Skye.  They then get a CD and prints of their precious baby girl all for free.

Selfishly we want her to stay here on earth with all of us, but the Lord may have bigger and better plans for her home with Him. 

Dear Lord, please help Coral and Ethan through this big emotional struggle.  Please give them peace with any decisions that need to be made and show your presence and overwhelming love for all of them.  Amen.

5 weeks and Ethan's Birthday!

Skye turned 5 weeks old this week and today is Ethan's birthday.  We got together with them to celebrate by having lunch and birthday cake.  We got them a set of movie tickets to go have some fun, so I think that is what they did this afternoon/evening. Ethan is going back to Montana tomorrow for an undetermined length of time.

Skye is doing great!  She is 6.8 pounds and eating 5mL/hour of mom's milk now. She is initiating each breath, but the ventilator is set up to help her each time.  She still needs help.  Nothing else developed with the fluid, so that is sooo great!  They do x-rays daily, so caught it very early.

Here are the pictures from my visit today!!

She is in a crib now!!!

Happy Birthday to Ethan from Children's!

Chest X-Ray

Yesterday's chest x-ray showed that Skye has a lot of fluid on her lungs, so they are worried she might be getting pneumonia. They are trying to stop it before it turns into that.

This evening the update is good.  They still don't know exactly what is going on, but they have her on antibiotics just to be safe, but overall she's doing well!

All the prayers for her have been working, whether they are general or specifically about what is going on that day, so keep them up!

One month old!

Baby Aurora Skye is one month old today!!!!  Praise God for this little life and the one month we have been blessed by her so far.  She is doing well.  She has told the nurses and docs the past few days that she needs the weening of the meds to be slowed, so that is what they are doing; holding off for a bit and just keeping the meds steady.  She is way down from where she used to be though and is off all heart medications. The ventilator is still helping her breathe.  She is up to 2mL/hour of Mom's milk.

Dad was nervous about holding her, so he didn't until today; so I captured his first ever hold of his daughter!  The nurse basically made him by telling him there was nothing to it and I think he was then glad!!

Here are the one month old pictures from today!!

Better Day!

Today was a better day!  She is doing well.  I don't know any more details, but hopefully I'll know more tomorrow after my visit!

Hard day

Today was a hard day for Skye. She's having a bit of a hard time getting the oxygen she needs and her gasses aren't looking very good.  That's all I know this evening.

In Mamma's arms!!!!

Coral got to hold Skye for the first time yesterday!!!!

Sunday, the tube in her stomach came out on it's own.  They wanted to watch her for a bit to see if she needed it back in, but I guess it was fine, since she got to be held for the first time on Monday at 25 days!

Nothing to note from today.

I will be sure to get pictures of the new snuggle time on Saturday!  :)

I also made it easier to post comments on the blog by taking off the "word verification".  Someone told me they were having trouble, so now it should be easier/work.   If you don't have an account you just put in your comment and click the "anonymous" ID, and then make sure to write your name in the commment box so I know who it is from! :)

23 days old!

Our visit today was filled with a bunch of good news!

1. She is breathing on her own, most of the time!!!!!  This is huge.  She is still on the ventilator, but it lets her breath as long as the number is above 45.  If it drops below that, then the machine does it for her.  This happens mostly when she is asleep, but when awake, she's doing it herself.

2. She is eating Mommy's milk!!! This is another big thing.  She is given a "tiny trickle" (1cc/hour) through a tube that goes through her nose.  Finally, she can actually get something real instead of just nutrients via IV!!

She still has a tube draining fluid out of her abdomen from the surgery.  When that is gone, she can be held.   I think that is the next big stage!

Here are pictures from our visit today!

Daddy's back!

Slow & Steady....

Not much to report other than that they are slowly decreasing the medications and oxygen, not too fast, and she is handling it well!

We plan to visit again on Saturday!

Off Oscillator!!!

The Oscillator is the "new breathing" machine that I talked about in the last post; and she is off it and doing great!!

She's back on the ventilator, which is the "old breathing machine" that I talked about before.

It's progress; slow and steady is what we like!!!

And, Ethan is coming back this weekend for an extened length of time!!!

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.