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.