Happy Birthday!!!

It's hard to belive that it has only been a week.  Today was another good day, and a great way to celebrate our little girl's 1 week Birthday.  Stella is kind of a rockstar (Nurse Katie even made her a sign to celebrate!). 

Day 7

Today was a big day for our baby girl.  We are 4 days out from her Norwood and she was scheduled for chest closure this morning.  Stella was all ready for her procedure to start first thing this morning but other events on the floor (unrelated to us) meant that she didn't get started until around noon.  The procedure went smoothly.  After about an hour and a half, we were able to sneak back in the room and see her for a few seconds while they were still cleaning everything up.  When I saw her, it was as if a huge weight had been lifted.  I know that Stella still has a very long way to go before we can take her home and appreciate that their will be setbacks along the way (it is only a question of when with this disease) but knowing that she was "whole" again gave me a moment of peace and comfort.

After the first surgery, which is done in the OR, the rest of the procedures are performed in her room.  They basically shut down the unit to non-essential folks, and perform the required operation(s) on your baby in the same room where you were sleeping last night.  It is mind boggling, but so is the concept of trying to move her with all of the IVs and tubes that she is hooked up to right now.  Along those same lines, they were able to turn off another cardiac support medicine!   Our little girl is proving how strong she is everyday.

The plan for the next few days is to ensure that she remains stable while they continue to ween her from the cardiac support medications and the ventilator.  If she behaves tonight, they have said that she will get to "eat" (through an NG tube likely) very soon!

Stella says night night...

Chest Closed - Check!

She did great! We got started a little later than expected, but Miss Stella is now snoozing away with a closed chest - praise the Lord! She looks fantastic and has great numbers post surgery. She's even swaddled like a "normal" baby (the little things!) 

Tomorrow!

Stella is scheduled to have her chest closed in the morning - we are so happy she has had another quiet day and is physically ready for this milestone. If all goes according to plan, they will begin around 7:30 am and the whole procedure should take about 2 hours.

Thank you in advance for your prayers! We are one step closer to holding her again - and this Momma needs to snuggle. It seems like its been an eternity since I last touched her without fear of setting off an alarm or causing her pain. Prayers for a smooth surgery and fast recovery. Guide the doctors hands and give them wisdom as they manage her pain post-op!

We'll keep you posted in the morning. Sweet dreams, Stella!

Hi!

Hi friends - Thanks for praying for me every day! I can't wait to get better so I can meet you all! 

Day 5 (Post Norwood day 2)

Today was another good day.  The plan for the entire day was to ween Stella's cardiac support medications so that when they close her chest, they have medicines they can go back to that can help her without going to extreme doses. The goal was to stop the Vasopressin and to cut the Epinephrine by a little over 1/3.  Stella said challenge accepted!  She hit her goals in less than 10 hours while maintaining relatively steady cardiac values.  We are hoping for another peaceful night for our little heart warrior as they continue to slowly take enough fluid off her body so that they can close her chest (milestone # 2), hopefully on Monday.

We also got to see her little eyes for a brief moment again today.  She responded well to not being on the paralytic, so she has been off of it all day.  It is nice to see our baby girl be able to move, if ever so slightly.  They are keeping her comfortable with pain medication and knowing that she is able to move and provide even more information to the care team here (by how her face and body reacts to stimuli) is another valuable piece of the puzzle.

We cannot say enough about how amazing and kind all of the nurses and doctors are.  As some of you know, we went to Boston Children's Hospital for a second opinion (not to confirm the diagnosis, we knew what it was) to make sure we were making the best decisions about where to treat Stella.  At the end of that trip, the Lord made it abundantly clear that St. Louis Children's was the best place for our little girl's care and every minute of every day we are here, the people keeping our little girl alive continue to reaffirm our decision. The nurses from the day she was born even stop in to tell us they are praying for Stella - God shows Himself in so many places here. 

Some have asked about visitation.  We appreciate the amount of love, support and prayers that we have received and are still receiving.  While Stella would love to meet those who have been helping us through this difficult time, the world is full of scary germs that her body cannot handle right now, so visitation is limited to family only.

Please continue to keep our little girl in your prayers.  They have started to prepare us for our next milestone (when they close her chest) and the fact that we may have some rocky days ahead.

Finally, one of the highlights of Kate's day was when a nurse put a little bow on our girl...

Email updates are now enabled

Iv'e added a link to the right hand side of the blog, if you prefer to receive new posts by email.  Our posting times are sporadic, so we thought this may be an easy way to get the same updates out to folks and to keep people from having to constantly check back to the blog.  If you subscribe, you will get an email once a day with all of the posts for the day (I think that is the way it works, if not just let me know in the comments).

Day 4

After an eventful early morning, I am happy to report that today was a quiet day! After draining her belly, Stella's cardiac function began to improve, which meant her kidneys began to work and her insulin and lactate levels trended back down (hooray!)

One of us has been able to remain by her side all day while her body recovers - she looks so sweet and peaceful despite what seems like 10,000 wires and tubes coming out of her. This afternoon her team began peritoneal dialysis to continue to remove excess fluid from Stella and work towards re-closing her chest early next week. After that, the next goal will be weaning her from the ventilator. Maybe by Christmas? I'm pretty sure that's all any of us are asking Santa for.

Our girl continues to impress the team with her ability to fight and remain stable. We HATE every step of this process and understand that the level of supportive care she is on will take quite a bit of time to come off of. So please pray for patience (for both Stella and her parents) as we endure the recovery process! We trust she isn't in pain right now and that the doctors are managing her medicine accordingly. And every day we are continuously humbled by the outpouring of love and prayer we receive for Stella - from all over the country and from friends we've never met. I dare say I never knew someone so popular on their 4th day of life :) 

Complications

Update to the start of this post - They were able to get enough fluid off that her kidneys started working again.  She has another tube now, but hopefully this one won't stay long!  Today's goal is to try to get her stats moving in the right direction while slowly weening her off some of the IV medications.  I counted 14 seperate IV lines at one point last night.  We will just be watching and waiting for the hourly lab draws to see a trend going where it needs to keep our girl on the path to our next major milestone - closing her chest (again).

Our little heart warrior is still fighting strong.  Her levels are slowly going the wrong way and her kidneys stopped cooperating.  So she is in a cycle that we need to break.  They are prepping now for another surgery to go back in and try to help her. 

First milestone reached

No words can truly describe the last 12 and 1/2 hours.  After a long day, Stella is stable.  They did not have to put her back on the bypass, so we are thankful for that grace.  All of the doctors have warned us that the next 24 hours (and especially the next 8-12) are probably the most critical. They've already started combating some of the issues that are starting to creep up from the procedure and because they had to go back in.   Right now they are not "worried" (it's all relative in the universe we live in now).  

A couple pictures are below. The first pic isn't very detailed.  Watch out for the next one if you are squeamish.  Hopefully, one day some other family will find this blog and it helps to prepare them like so many others did for us.