Little Miss Big Stuff

Today is Stella's due date! She woke up this morning and decided to celebrate the New Year with a move - we are getting OUT of the ICU and moving down the hall to the regular cardiac floor! This is such major news for Stella - the next chapter in getting her healthy and home.

Since extubation Stella has been an absolute rock star. She was weened off all IV meds quickly - the last one was turned off late last night - and she has been "soaring" according to her physicians. She was such a big shot coming off the ventilator she only needed medicine to control her blood pressure for about 90 minutes (usually something that is left on for an entire day). This morning her oxygen was turned all the way off - she is loving life breathing on her own!

The next hurdle will be feeding her - she is still getting all her milk and nutrition from an NG tube, but we are excited to try feeding by mouth in the coming days! That is usually one of the biggest hurdles for heart babies because they get tired very easily and we don't want to add any unnecessary strain on Stella's heart by making her work if she isn't ready. We need to bulk her up for her next surgery in a couple of months (which is something I'm not even ready to think about right now) so we pray she tolerates feeding and hasn't developed any oral aversions after so much time with a tube in her throat.

In other very exciting news - Stella wears clothes now! I love seeing little Miss all snuggled up and cozy. Mommy and Daddy have gotten some serious (and much needed) cuddle time in and we are just so happy for our little heart warrior!

Three years ago today my grandfather passed away and December 31st has since been a difficult day for our family. I have no doubt Gramps is up in Heaven cheering for Stella as we have something really special to celebrate on a day we usually spend mourning his loss. God is so faithful!

Tube out - check!

No more ventilator!

Waiting ...

So much of the healing process for a heart baby is just waiting ... Waiting to ween off meds, waiting to start feeds, waiting to get stronger. Today we wait on the ventilator. Stella's doctors want to give her one more day to eat, rest, and practice breathing before they extubate. To say I was disappointed this morning would be an understatement (cue the crying, postpartum, sleep deprived mother). But I know that ultimately the decision is up to Stella, her doctors, and in God's hands.

I pray she has an uneventful day and night and is ready to roll in the morning! Having patience and listening to a team of strangers tell you what is best for your child is taxing - I swing between overwhelming gratitude for the wisdom of these brilliant doctors, to hating them for knowing better that I do about what Stella needs. I know in the long run its just another 24 hours, but darn-it, I wanted to hold her.

You are worth the wait, Stella! One more day!

Blondie

Stella had a perfectly quiet and productive weekend recovering from her Christmas Eve "hiccup". Her team has let her take the lead and decide how slowly she wants to ween off the ventilator. As of tonight we are finally turned down to a rate where she can loose the tube and are on track for a Monday morning extubation! 

I cannot wait to have this peanut back in my arms - it's been 10 days since she's been held and absolutely brutal to watch her in pain and know there was nothing I could do to soothe her. Get ready, Stella, Momma isn't going to put you down!

Sleep tight, blondie. You have a big day tomorrow! xoxo

Baby steps

Stella had a calm Christmas Day, which is what we hoped would happen.  We brought the twins to the hospital to see their sister and, unlike last time, they were great and lasted about 30 minutes.  As a reward, they got hospital cafeteria french fries (which are pretty darn good).  Stella's Christmas night was also calm and uneventful, which set us up for a big day today of trying to ween her from the ventilator again and also reducing some of her medications.  If all goes well, our baby girl should be off the ventilator tomorrow or Monday!

Five words...

Five words that a father should never have to say..."Her chest is not moving".  Five hours ago, I said these five words, coupled with the respiration rate on the ventilator nearly being flat lined.  Stella's room filled up quickly and a lot of folks were helping her get back to doing what we all take for granted - breathing.  I've never been or felt so helpless in my life as when I am standing 3 feet from my daughter's bed knowing there is nothing I can do other than watch the team of people working to get her breathing again.

Our little girl has been doing amazingly well and has been through so much already.  Tonight she let us know loud and clear that she needs a little more time before she is ready to come off the ventilator.  She is back on ventilator support (about 2/3 of the level of her max support) and her stats have improved steadily throughout the night.  Based on her de-saturation, low grade fever (that came out of nowhere) and her upward trending white cell count, they also think that she may have ventilator acquired pneumonia and proactively started her on antibiotics while the cultures get tested to be safe.

Our little girl is a fighter and we know that she will continue to take baby steps forward and will soon be back to where she was a few hours ago.  Stella is our miracle baby in so many ways and we can't wait to take her home.  But, for now, we just have to have faith, stay the course and try to be the best parents and advocates we can be, for all three of our blessings.

Kate and I continue to be thankful for the out pouring of support and prayers that we have received.  We wish you all a Merry Christmas.

Progress!

Our little over achiever has come a long way since her open heart surgery - I can't believe it has been a week since she had her Norwood procedure. Aside from the initial complications, she has been on a really smooth trajectory the past few days and we are so grateful! As of now, the majority of the lines and tubes have been removed from her fragile body. After a failed attempt earlier in the week, the team was able to get a PICC line in her arm yesterday and are on track to remove the tubes from her torso today! And, she has begun to eat!!! She is being fed very slowly through a tube in her nose, but is tolerating it quite well. Time to plump those cheeks back up!

Yesterday her doctors had noticed some haziness on her chest x-rays and ended up draining fluid from her right lung (poor girl) - but hopefully this will enable her to breath even easier as she comes off of the ventilator. We had been told that could happen as early as today but as of this morning, she wasn't quite ready. The new goal is TOMORROW, so please keep her in your prayers! I can't wait to see those chubby cheeks without a tube and tape across her face!

We are doing our best to balance life at home for the twins while spending as much time with Stella as possible - which is physically impossible since all we want is to be in both places at once. We are trying to focus on the positive and celebrate Christmas with grateful hearts for all God has brought us through this week. I'd be lying if I told you I'm excited about waking up in the Cardiac ICU on Christmas morning ... or that I don't get angry that MY child has to suffer and is stuck in an impossibly small hospital bed instead of spending the day being spoiled by her siblings and cousins. But we are praying for comfort and quiet this season - and to spend it at HOME next year.

Stay tuned later today or tomorrow - hopefully Miss Stella will excel as they turn down the final ventilator settings and we will get to see all of her gorgeous face! Keep fighting, baby girl! Merry Christmas Eve!

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.

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!

A Good Day

Yesterday was a "good" day! Which is mildly hilarious considering both the twins are sick, Mama is running on empty, Daddy has been super busy at work and not sleeping well because someone tosses and turns trying to get comfortable with a giant belly allllll night long. So maybe the bar for good days is set at an all-time low - but we are going with it!

Yesterday we spent most of the day at Children's Hospital meeting with the team that will most likely be taking care of our girl. To say it was overwhelming would be an understatement, and yet we left with a sense of peace that knowing that God brought us to St. Louis so these fine doctors and nurses can help heal Stella while we have the support of family and friends. Stella had another echo and nothing has changed since the diagnosis - which is a really good thing! And she jumped up to the 22nd percentile in growth. Baby girl is gaining and we praise God for that, since we need all the baby fat on her we can get!

In addition, we are overwhelmed by how many people want to pray for us. I realize now that I have always taken for granted the fact that I was raised in a community of Christians, and am surrounded by people that fear the Lord and trust in His will. From the random texts I receive from friends sending their prayers, to the people I work with, to the strangers that pass along their prayers via friends and family, I'm blown away by how often God shows Himself to us in all of this.

We are three months from our due date which seems like an eternity, but I know the time is going to fly by. I cannot wait to meet this little girl. I know she is going to bring so much joy to our family, and stretch us in ways we never knew possible. I am grateful for the good days at home with two healthy children right now, even when they drive me crazy (which is a lot!) So for now we will rejoice in the good days, hunker down and pray through the bad ones, and try not to take for granted the blessings we receive in between!

The Diagnosis - Please Pray for Stella

On August 17th we went to our doctor's office for what should have been a routine check up and anatomy scan at 21 weeks. Adam decided to tag along because it was my birthday, plus he hadn't met our new OB and figured it would be nice to say hello before they met in the delivery room. During the ultrasound the technician kept saying she couldn't get a good picture of our baby's heart - that she wasn't in the right position to get all the images she needed. We had a high risk and complicated pregnancy with the twins and have become pros at sitting through ultrasounds, so we didn't think much of it and figured our girl was a wiggle worm like her big sister.

While we waited for the doctor to come in we turned on some music for the twins, had a little dance party, and never imagined we had anything to worry about. When our OB came in (and it's hard to remember) I think her exact words were "it looks like there is something wrong with your baby's heart." Oddly enough, even then I wasn't worried. Our son, Connor, has a small heart murmur and another minor defect that hasn't and likely will not effect him and I just assumed it was something along those lines. We were scheduled for a level 2 ultrasound that afternoon and at that point my biggest concern was getting to chick-fil-a for lunch before I had to get back!

Fast forward a few hours I had my second ultrasound of the day and the reality of the situation started to sink in. I went to this one alone (big mistake) and as I watched the technician check every box "abnormal" regarding our child's heart, my own heart sank. Soon, a doctor joined us to see for herself and began to explain that our baby has a very serious heart condition called Hypoplastic Left Heart Syndrome. I'm sure everything she was saying made sense, but I wasn't processing a single thing and knew I just wanted OUT of that office. She eventually drew me a picture on a post-it to take home, made me promise not to Google any non-medical websites and told me we would need to schedule a fetal echo as well as a series of appointments at Children's Hospital with the Fetal Care Center. I wanted to throw up.

Since then it really has been a blur. We've cried a lot (well, I've cried a lot). We've researched, gotten recommendations, received prayers upon prayers, and started making plans. We've met with the doctors at Children's Hospital that confirmed our diagnosis: Hypoplastic Left Heart Syndrome with mitral stenosis and aortic atresia. Essentially, our daughter's heart didn't and won't develop properly and she will need a series of open heart surgeries to "reconfigure" her heart. Without surgery she will die - there is no cure. She will live with one working heart ventricle, not two. She will have a 70% chance of making it to her first birthday and a lifelong battle ahead of her.

With a diagnosis like this there are SO many unknowns. Until she is born and has her first surgery (likely around her 4th day on earth) we won't begin to get an idea of how she will respond and what her body will be able to handle. But here is what we DO know: We know she is loved and that we will do everything in our power to give her the best care and quality of life imaginable. We know she is a miracle baby - after struggling to conceive and going through 2 rounds of IVF to get our twins, she came unexpected and unplanned, but completely loved! And we know she is a gift from God who has preordained a plan for this special girl beyond what we could have ever imagined. She is already teaching us how to love hard, pray continuously, and cling to the Lord when we want to crumble.

We are obviously so sad knowing our child will suffer, struggle, and always cope with a medical issue that will leave her with half a working heart. BUT, we are determined to rejoice in Him always, praise His name, honor His plan for our family, and look to Him as we navigate through what lies ahead.

We've named our daughter Stella Ann Stacy and decided to share her name so you can keep her specifically in your prayers. Thank you, in advance, for your support and love for our family and especially, our dear Stella.

xoxo,
Adam, Kate, Connor and Ellie