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!