The long awaited update.

First of all, thank you to everyone who has continued to pray for our girls and our family.  I know this update has been a long time coming, but it’s finally here.

I also want to thank all the people who have donated money and food to us.  Every little bit takes a little stress off our shoulders and helps us continue on.

Our beautiful girls were brought into the world on 4/12/16 at 10:42AM.  When I heard their first cries, it was an immediate relief.  They were here!  The most beautiful cries I had ever heard in my life.  They came out holding onto each other, like in a hug and it was beyond precious.

SCARLETT ANGELA PHILLIPS and SAVANNAH GRACE PHILLIPS

Mark was there, although he joked all pregnancy he wouldn’t be.  He made it through the whole process without fainting, and everyone was so proud of him.  He documented everything with pictures, and ensured we would remember every part of this day for years to come.

My c-section, was a success, but a painful one.  My spinal block wore off with about 20 minutes left of surgery, so you can imagine what that was like.  But, on a happy note, since my legs were not numb, I got up within an hour after surgery and went to see my girls.  Everyone was floored, but I was determined to see my princesses.

The girls had a combined birth weight of 10lbs 8oz, and were 17.25″ long, and oh so beautiful.  I was in disbelief we had made it, considering where we were when we started this journey.

For the first week, they had 2 one-on-one nurses, around the clock.  The girls were doing so well though, they went down to one nurse pretty quickly.  Now came the tests.  I feel like there were countless MRIs, CTs, echo-cardiograms, ultra-sounds, and x-rays all trying to confirm anatomy that they were just guessing at before they were born.

They are content babies.  Easy to soothe when they are upset, and they don’t cry much at all.  What they do do is either hug, or hit each other almost constantly.  So that’s what I was feeling the whole time I was pregnant!  We have also had great nurses.  They make the girls outfits, head-bands, and banners for their room with love.

Then, on we received some not so great news.  This is an excerpt from my “journal” of sorts, dated April 27, 2016.

“Some days I swear I am not strong enough for this.  The girls were two weeks old yesterday, and just when I thought I knew what was coming next, nope.
I should know better.  Every time I think I have a mental and emotional handle on what’s going on, and maybe what will happen next, these girls throw me for a loop.
It’s been that way since conception though.  I have to keep telling myself, God has a plan.  He has this whole time, and there are no surprises for him.  He planned it all.”

The news was in the form of a conference with all of their doctors and nurses.  We were told what they thought the girls’ anatomy looked like prior to their birth, and what it actually looks like, from their testing.

Hearts, as predicted.  Complete, but joined at the atria.  Scarlett has transposition of the great arteries, but we knew that as well.  The cardio-thoracic surgeon says on single babies, he repairs transpositions as often as once per week.  Livers, the “bridge” that connects their livers is larger than predicted, and has lots of vessels that will need to be carefully dissected.  Diaphragm, connected as expected.  But the hard one, the surgeon tells us the girls only have one portal vein.  A piece of anatomy I had never even heard of before, but apparently, you need one to live.  Our girls only had one.  And he tells us, with this news, only one girl has the possibility for survival. 

Back to being heart broken again.  How could we lose one after all they have been through.  I prayed.  We prayed.  We asked everyone we knew to pray.  Pray they read the MRIs incorrectly, something.  I prayed for another miracle.  I just knew God wouldn’t bring the girls this far and this was the answer.

God has a plan.  I tell myself this every. single. day.  We may not see it, but He knows.

I will fast-forward a bit, as the day-to-day with the girls in pretty routine.  I live in the day-to-day, as I almost didn’t get to have it with them.  So I enjoy it, but it’s not anything exciting to “write home about”.  Although, I did buy them a crib toy, and they are obsessed with it,  see pic.

More testing.  We continue to pray.  And almost holding our breath, we await the results.  God delivers!  Each one of our girls has their own portal vein!  Now, they had to talk logistics, planning, etc.  We were in heaven.  The doctors continue to tell us they are one-of-a-kind babies, and this is all very unknown and risky, but they are hesitantly hopeful, cautiously optimistic.  Me, I KNOW GODS GOT IT.

So, the girls are over 2 months old.  Their surgery is DAYS away.  Although I want everyone to continue to pray for them, I can’t give an exact date as I don’t want the media to flood the hospital on that day.  We have agreed to go public once the surgery is successful.  Share our girls with the world.  They will have a long road of recovery as well, but in the end, it will all be worth it.  We will have two wonderful, separate and thriving babies on our hands.

Lastly,  the link to our Go Fund Me page, should you wish to donate.
My Conjoined Journey Go Fund Me

Many thanks to everyone again for prayers, good thoughts, donations, etc.  We can’t thank you all enough.  Keep praying, it’s working! 

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