And more prayers ...

As quickly as we celebrated and thanked God for protecting Stella, we are asking for it again. 

We were just about to see her in recovery when she developed a clot in the shunt that was placed to connect her aorta to the main pulmonary artery. Her surgeons are working now to re-open her chest and remove the clot. Once they finish, her chest will need to remain open (like we had anticipated it would be) to allow for swelling. 

"Oh love that will not let me go, I rest my weary soul in thee ..."

Praise!

Our little miracle baby has once again surpassed ALL expectations. Her surgery went smoothly - no complications. She was able to go on and off bypass easily and her surgeons just came in to give us a full report. 

And to top it off - they were able to close her chest!!! Which none of us had ever even heard of as a possibility after this surgery and her surgeon confirmed is extremely rare, but she was doing so well he made the decision to go ahead and do it today. Praise the Lord! 

Thank you, thank you Jesus for answering prayers we didn't even dream to ask for!!! 

Prayer warriors - God hears you. Thank you! Don't stop! 

It begins

They just took our baby girl back.  We will update as the day progresses! It's expected to take 6-8 hours - Stella had a great night and we had time to snuggle and pray over her this morning. 

Surgery Tomorrow - 12/17/15

Stella is scheduled for open heart surgery TOMORROW morning (December 17) at 7:30 am!

This will be the biggest and longest of the three surgeries planned for her - we anticipate it will take around 6-8 hours and the girl we get back from the operating room will look very different from who we kiss goodbye to in the morning. We expect her to be swollen, have tubes and IVs coming from just about everywhere, and her chest will be left open for a few days to allow for swelling. She will likely be on a paralytic and we won't be able to touch her, let alone hold her. 

No matter how much we have read and researched, and how many experts we have talked to, we still aren't ready for this. I just want to grab my baby and run away to save her from any pain. Tonight we snuggle, tomorrow we pray. Please join us in asking God to protect Stella, guide our surgeons hands, and keep us strong on what will probably be one of the worst days of our lives. Adam or I will update when we can. 

On a lighter note, Stella met her big brother and sister today! The Stacy 5 together at last - thank you, Jesus! 

God is good!

Stella Ann continues to blow us away. Weighing a solid 7 pounds and 1 ounce, she came into the world full of life and demonstrating a very healthy set of lungs. 

She was immediately transferred to the Cardiac ICU at Children's Hospital where she sailed through her first echo and ultrasound. Tonight she is hooked up to more machines and wires than my Momma heart can handle, but is thriving, breathing on her own, and is just so dang cute I can barely stand it. Even her nurses love her - she's been spoiled with pink booties, hats and blankets. 

Today was filled with so much joy, it's hard to imagine the road ahead. We dread watching her suffer, and we pray for peace and strength in the coming weeks. 

Thank you for overwhelming our phones, inboxes and hearts with your fervent prayers. It has sustained us today and will keep us going tomorrow. 

Here are a few pictures of the newest love of our lives! 

She's a fighter!

Our baby girl came out kicking and screaming!   Mom is doing great.  We will likely have a surgery plan tomorrow morning.   One of us will post more later.

Happy Birthday, Stella!

Ready or not, here she comes! We were admitted to Barnes last night with a stomach bug and this morning the doctors made the call to prepare for delivery based on some concerning bloodwork that came in overnight. 

We are scrambling, praying, and over the moon excited to meet our girl a little early! Please pray for an easy delivery, no surprises on her first echo, safe travel for Adam's parents, peace for the twins who have NO clue what's going on, and guidance for her surgical team as they start making plans. Adam will post more once she is here! 12-15-15!!!

The Final Countdown ...

As of now, Stella is scheduled for a December 28th birthday! 18 days or less until we meet our girl. 

Knowing she could come at any time (and we anticipate she may come a little early!) we are ready to roll. Please continue to keep us in your prayers - specifically keeping big sister Ellie and big brother Connor healthy! We have all been hit by various bugs lately and would really like them to be able to meet their sister in the hospital before her first surgery - but they have to be germ free for that to happen.

Once she is born, one of us will update the blog on when surgery is scheduled and anything else significant. Thank you, once again, for loving us all!

xoxo,

Adam, Kate, Connor and Ellie

Big Stuff

For once, good news! Big stuff Miss Stella is growing!

At our 32 week appointment we had a growth scan and our girl has been packing on the pounds - she jumped from the 17th to the 31st percentile and is estimated to weigh 4 pounds already. Given that the twins were 4 1/2 pounds at birth, we are thrilled about a chunky baby. And the bigger she gets, the better her surgical odds are - so we are jumping for joy and stocking up on pecan pie to pack on the pounds!

We love you Miss Stella, and cannot wait to get you here to squeeze those chubby cheeks!

Boston

This past weekend Adam and I went to Boston to visit with the doctors at the Boston Children's Hospital for a second opinion. Going into the weekend, we were already leaning towards staying in St. Louis for Stella's care, but wanted to have peace of mind knowing we had met the doctors at the #1 pediatric cardiology program in the country and heard what they had to say.

We met with their head cardiologist, who was incredible, as well as his fellow and some other doctors and nurses who showed us around. As far as Stella's diagnosis, we didn't learn anything new (always a good thing!) but surgically, their technique is slightly different so it was interesting to hear them compare and contrast the procedures. Ultimately, they achieve the same goal and it comes down to the preference of the surgeon, but I am constantly blown away by the advances in medicine and the options for our daughter's tiny heart. At the end of the meeting we toured their cardiac unit and while it is well oiled machine, it was almost TOO big. I felt completely lost and was somewhat discouraged that the families of the patients aren't as involved in rounds or daily care. They get about 4 times as many HLHS patients a year which definitely leads to their successes in care, but made me fear Stella could get lost in the shuffle of sick baby after sick baby.

We were incredibly grateful to everyone who took the time to meet with us, answer questions and offer assistance, but left Boston with a peace that we are in the right hands at St. Louis Children's Hospital. Not only do we have family and amazing friends here to support us, but we are truly blessed by the team we have met and trust them completely. And on top of everything else, I cannot imagine moving to Boston with the twins for 3 months in the dead of winter - sorry, North Easterners, but you all are crazy :)

Coming back to the twins was a perfect reunion and confirmation that we all belong here, together, at home. The countdown to baby Stella continues - less than 11 weeks to go!