Good news

It took a lot of smart folks and some head scratching to get to the bottom of it but we finally have a diagnosis!  Stella has a partial blockage of her common bile duct.  This was causing some issues with her liver, which caused issues with her blood, which all ended with her throwing up (and slowly turning ever so slightly yellow). 

Our little girl continues to prove that she's special. So special in fact that our cardiologist had never seen this before. Treatment options are still being determined but it is not something that requires surgery or a lengthy hospital stay!

So, where are we now - Stella is still on track for her cardiac catherization on Monday. We will know on Wednesday whether this impacts the timing of the Glenn procedure. We are hopeful that her next surgery proceeds as planned but know that decision is out of our hands. 

Admitted

We were so close to making it through the interstage period without being re-admitted! SO CLOSE! But alas, we are back at Children's Hospital. 

Stella has been vommiting for about a week now. At first we attributed it to just being a newborn, and then wondered if it was an increase in the amount of formula she is getting. Her cardiologist assured us her heart looked fine last week and even though she doesn't have any other symptoms, figured it was a virus. 

But today, one week later and a little more weight loss than anyone is comfortable with, Stella has been admitted for tests and observation. Am I glad to spend the night back on the 7th floor? Not especially. But I am relieved to have the very best medical team with us so we can get some answers. 

We welcome your prayers! Pray our stay is a short one. Pray she doesn't have anything that would delay her Cath or upcoming surgery. Pray her heart function isn't deteriorating. And pray for the sweet twins at home who miss Mommy and Daddy when we are away. 

We will update here as we learn more!

Next Steps

It's hard to believe our little Stella is almost 3 months old. As quiet as the blog has been lately, I can assure you, our house is NOT. As of Sunday, we also have two 2 year olds - cue the chaos!

The twins have figured out that their baby sister is here to stay and it's been fun watching them grow every so slightly attached to her. They've also become attached to her stuff. The odds of Stella ever getting to sit in her own bouncy seat or bumbo are slim. But Ellie does an excellent job taking care of her babies like Mommy, and Connor does an excellent job making noise and ensuring no one sleeps soundly :)

Meanwhile, Stella is doing great! Every other week we visit the cardiologist for a check up and her doctors are thrilled with her weight gain and oxygen saturations. As she approaches her three month birthday it's time to start preparing for the next open heart surgery (the Glenn). Ahead of the Glenn Stella will have another echo, EKG and then a Cath to determine that she is indeed ready for the surgery. As of now the Cath is scheduled for March 28, and then the Glenn on April 12th. We are told the average hospital stay for a Glenn is about one week - barring any complications. We pray Stella's recovery will be as remarkable as it was after the Norwood and she will be back home in no time.

Once her second surgery is complete, we can all sigh a breath of relief. The "interstage" period will officially be over and Stella can be treated more like a normal baby. No more weighing her every morning or checking her O2, and no more freaking out every time she sneezes or sweats more than usual. We can try and live like a typical family, take her places, and say goodbye to the doctors for a while. Will I still spaz out about her all the time? YES. There is always a chance she could get sick or her heart could deteriorate. We will pray that she remains healthy and her body continues to handle a single ventricle heart, but recognize that we might not be that lucky. If all goes according to plan, after April Stella won't need another surgery until she is 2 or 3 years old. So have I wrapped my head around another open heart surgery? Nope. But am I ready to have it behind us? YES!

And we remain very hopeful that after the Glenn, Stella will take a bottle! Feeding is the only area she has failed to progress and while it has been frustrating, it isn't the end of the world. For whatever reason, bottle feeding makes her uncomfortable and she now gets visibly agitated when we try to get her to eat. I wouldn't say I've given up, but I try less and less and am just grateful that we have the option to feed her with the NG tube. We are told that she should "come alive" after the next surgery and that is when most HLHS babies are able to be completely bottle fed. FINGERS CROSSED and prayers are welcome!

So that's what is on the docket around here! In the meantime we'll continue to add more rolls to our little chunk of lovin. As always, some recent pics of the chaos. 

In Love with Baby Wearing ;)

Queen of Hearts!

Ellie Loves Her Morning Milk in the Bumbo

Happy Birthday, Connor and Ellie!

Rolls on Rolls - Clearly Not Starving 

Hi!

Mommy and daddy have been super busy keeping up with my brother and sister, so I thought I would take over real quick and say HI!!!!  I got to see my favorite cardiologist today and she said I was doing great and on track for my next surgery.

See ya soon,
Stella

Seven Weeks!

Stella is seven and a half weeks old! Every day we fall more in love with our little chunk of lovin. She is over 10 pounds and has continued her impressive progress at home. I've sat down to update the blog a dozen times and never finished (thanks, kids) but we appreciate the requests for updates! It feels good to be in a routine and not feel the need to post daily - a little cruise control never hurt anyone. But thank you for caring, checking in, and continuing to pray for us all! (And for everyone that has brought us food - thank you, thank you, thank you. We are unbelievably blessed).

Stella's heart is stable (or as stable as a 7 week old with half a heart can be). We have had a couple follow up appointments with the cardiologist, including one this week. We spent Tuesday morning at Children's Hospital after almost week of noticing Stella's O2 saturation had been a little lower than normal. Her doctors want her to hover around 80 (ideally between 75-85) and she had dropped to the low 70s and occasional high 60s the past few days. Thankfully, an echo revealed that absolutely nothing is out of the ordinary and we are going to attribute the low sats to fussiness or perhaps a bad sensor on the machine at home.

Stella's heart looks good. There is mild leakage in both her valves - but as long as that remains mild, her doctors are pleased! She gets a gold star for growth (hello thigh rolls) and is super alert. Basically, she rocks.

We still haven't made any progress in bottle feeding - our girl just won't have it. She tolerates the feeding tube and still gets all her milk through the tube which is a blessing, but I'd love to lose the tape on her face and gagging the tube causes her. The other morning she spit up and gagged so hard the tube came flying out of her nose - it was traumatic for both of us. We met with her speech therapist this week and learned some new tricks so fingers crossed she will give the bottle a try.

Connor and Ellie have become superior older siblings. Ellie finally acknowledges Stella (most of the time) and brings her pacis and blankets and wants to mother her as aggressively as I will allow :) Connor pushes the limits of being a big brother - but clearly adores her and I can't wait until the three amigos are running around like triplets.

We are so thankful for very few setbacks and lots of family time at home. Life with these three will never ever be dull, but I can't imagine it any other way!

Some more highlights from the Stacy 3 :)

The first car ride with all three kids - Lizard and I were bored and they were so stir crazy we just drove around and enjoyed leaving the house! And yes, Connor has a black eye. Oopsie. 

Stinker has pulled out her NG tube often this week - but I love her tube free face!

Our sweet neighbor lent us their bounce house to amuse the twins while they are stuck at home. No broken bones yet!

Baby girl has some cheeks! Giving Bubba a run for his money :)

Life at Home with Three Under Two

Three kids is a LOT of kids. Turns out, three kids is way more than two kids. But everyone is still alive! (Shout out to Izzy and Bubby for taking our dog - no way we could be responsible for keeping one more thing breathing right now).

We've started to get into a "routine" since Stella came home on Thursday. To the naked eye it probably looks like chaos - but I like to think it's an organized chaos? Humor me. Stella has absolutely thrived living life outside of the hospital. She loves being held all the time, is tolerating feeds from her NG Tube like a champ, and has steadily gained weight and maintained good O2 stats daily. Honestly, I didn't think the transition could be this smooth.

Girlie still refuses to drink a lick from the bottle. No way, no how. She seems rather confused why I'd even offer her a bottle when the milk magically appears in her belly every 3 hours - so she isn't stupid. We will work with the speech therapist to get her there, but for now, are letting her call the shots and set the pace.

The twins have mixed emotions about their little sister. As predicted, Connor is a total sweetheart and wants to help all day long. He says "Bebe" and takes her toys and snacks constantly. Meanwhile, Ellie has barely acknowledged her existence - breezes past the crying baby as if she knows this kiddo will wear her hand-me-downs and steal 33% of her parents attention on a daily basis. Again, our kids aren't stupid.

The first morning we all woke up under one roof was a long one. Everyone wanted to be held/cry/poop/not eat. Adam and I looked at each other like "what have we done?!" ... and then, I thought about all the families still sitting in the Cardiac ICU. The mom I met on the day we were discharged who had been there 8 weeks and had finally got her daughter listed for a new heart. The little boy down the hall who was 11 months old and had never left the hospital. Or the little girl who waited 4 months for a double lung transplant. Turns out, we are the lucky ones.

Now that we are home, Stella finally feels like she is "mine" ... I don't have to ask permission to pick her up or worry about strangers walking into her room at all hours of the day to care for her in ways I wish I could. She is SO chill. Maybe it's because she has been through so much, but nothing gets to her. I think I have a few things to learn from my 4 week old. She has started to smile, loves being pushed around the house in her stroller, and likes a good late night party from 3-4 am :)

We just continue to praise Him for her remarkable recovery. It is going to be a long road - no doubt this is just the start. But Stella has already been such a blessing and witness to so many, we rejoice in her success and will continue to seek His will in her suffering. We pray for weight gain, quiet days (and nights!) and smooth sailing until her second surgery. Thank you all for loving our little girl so much - there will never be words to express our gratitude!

And finally, some hi-lights from home!

Dinner time for the Stacy 3 

Ellie hijacking Stella's new ride

First trip to the pediatrician

Bubby's 60th Birthday - he ordered a Stella since she couldn't be there :)

Home!

We have never been happier to have an IV pole in our living room!  Stella continued to impress everyone and was discharged a few hours ago.  

Rounding Third Base!

Stella is almost home!  She continues to grow and has been able to avoid any more bumps in the road.  We are pretty much settled into a routine at the hospital, which will carry over to our schedule at home.  If she continues to be a rock-star, we could be home as early as tomorrow!

Even though Kate and I have been "living" through this (Stella is actually doing the living part), I still don't think we can ever truly process all that Stella has gone through and how lucky we are, as compared to other HLHS families who have had, or are currently going down, a much more difficult road.  Our time here has also been made much easier as a result of an outstanding clinical team and a tremendous amount of support from family and friends.

As we transition to home life, I am sure the posts will become less frequent but we certainly plan to continue to routinely write about Stella's life, as she progresses through the surgeries we already know are planned and the procedures in between, that may be slightly less planned.  I imagine our posts will transition to the trials and tribulations of raising highly energetic twins and a heart warrior!  To say our perspective on life has changed would be an understatement.

I know Stella is excited to meet everyone in the late Spring/early Summer, when the quarantine is lifted from our house!  Until then, stay tuned...we'll be right back...

Rockin

The amazing Stella continues to blow us all away. When we first learned about her heart condition and met with her cardiologist, I remember asking how long we would be in the hospital after each surgery. Dr. Lee was very honest with us (and continues to be!) and told us to expect anything from 4-8 weeks, but realistically to plan on 6-8 weeks. She mentioned that occasionally a child will soar through recovery and leave in 4, but that is not the norm. WELL. Stella is not the norm. Her doctors are talking about discharging her this week! (She turns three weeks old tomorrow - but who's counting :))

This little girl is such a champ. She is rarely fussy and only takes Tylenol 1-2 times a day for discomfort. She doesn't even have her stitches out from open heart surgery and only needs Tylenol?! I'm telling you, she is a rock star. Stella continues to do well feeding through her NG Tube and we are working on upping her volume and shortening the time it takes for her to eat. Right now she can handle about 2 ounces over the course of an hour - which may sound small but you should see what it has done to plump up her cheeks!

We have a busy few days here checking off a laundry list of items required to take her home. Momma has learned how to place her NG tube in her nose (which was probably more traumatic for me than Stella) and we attend infant CPR tomorrow. She will go for follow up CTs and echos today, and then begin the "normal" routine of checking out as a newborn (hearing tests, car seat tests, etc). After that, we'll begin to discuss home monitoring and schedule her follow up appointments both here and at our house to keep her healthy and thriving. 

Our biggest hurdle remains oral feeds. Girlfriend has yet to swallow a lick of milk. She doesn't seem to have an aversion to us trying to feed her - just doesn't really get it yet. The speech therapists will run a swallow study on her this week to make sure her vocal chords weren't damaged during surgery and we can work from there (although in order to complete a swallow study, she actually will need to swallow - so there's that!)

All in all, we just feel so grateful. Stella has exceeded everyone's expectations after her first surgery and we praise God for answering our prayers. It is hard to believe she is still a very sick little girl - she looks and acts so healthy. We live in fear of her getting a fever or infection. I'm terrified to take her home, out of the bubble of nurses and monitors that tell us she is doing fine. I know its nothing short of God's divine intervening on her behalf that we are even talking about leaving the hospital this week ... and I pray he will continue to keep her on this stellar trajectory at home.

Some weekend pics - she is so alert and happy all the time. We are just obsessed with this doll baby!

Life on the floor...

Stella officially moved down the hall yesterday afternoon and had her first night on the "floor".  It was another step closer to bringing our girl home.  If she continues on her current rock star trajectory, we could be bringing her home the week after next!!!   We are more than ready for her to come home and to stop living at the hospital but the concept of caring for her right now seems daunting.

This side of the double doors we get to be a lot more hands on.  The goal is for her to continue to be stable and gain weight, while they teach us how to care for her at home.  All of the doctors and nurses were great in the ICU about explaining what they were doing but once we crossed over here, we have to learn to start doing it.  Although she still has a PICC line, they decided (with a little prodding from daddy and one of our favorite nurses) to hep-lock it, so now we only have 3 wires and an NG tube to contend with when we pick her up.

We brought C & E back to the hospital today to see their sister...not sure how they feel about a baby sister coming home just yet...