A Brief Intermission

Just wanted to take a break from hospital life to share some of these pictures of two of the cutest little girls there ever was. And that's my true, honest, unbiased opinion.

/Joe

Back to NICU

Lily is doing much better today. She's up to her regular feedings now and no longer has any IVs or tubes other than her normal feeding tube and replogle. Yay! It's crazy to me how quickly she is recovering from a major surgery. She's fierce! She transferred back to the NICU this afternoon and is settled back in her old room. Now we wait for Boston to have an opening for us. One big hurdle down! Thanks again for all your prayers!

Post Op Day 2

Progress! Lily was extubated this morning with no issues. She's breathing well on room air. She had her foley catheter and one of her IVs removed. Her swelling has also gone down, so she's starting to look like her normal self. Unfortunately, because she's awake and alert now she is also starving. She didn't eat for over 2 days. Even though she's never had anything to eat by mouth, so was trying so hard to eat her hand today :( They have started feeding her now, but they have to start small. She's only getting a small portion of her normal feedings, so she's still very unhappy even after they feed her. It's hard on us to see her so upset. It will take about 3 days to get her back up to her normal feedings.
Tomorrow she will get her pacing wires removed and she might go back to NICU. Otherwise it will be Tuesday. Thanks again for all your prayers. Some of Joe's family stayed with us this weekend to help take care Cora and Rose while Joe and I spent so much time at the hospital. We're very grateful for their help too.

Post Op Day 1

Thank you for all your prayers and support yesterday! Lily had a good night last night and things are going well today too. She is still sedated and intubated, but they want her heart to rest right now. She had 3 chest tubes in after surgery, but those just came out, and they also took out her arterial line today. She's a little puffy from all the fluid, so she's getting some lasix to help her get rid of extra fluid. She still has a couple IVs, central line, external pacing wires, and foley catheter. She looks comfortable most of the time, but she does kick a little bit and briefly open her eyes. They did an echocardiogram this morning and that looked good. She also had a chest xray which showed some extra fluid, but that is expected I guess and should be improving. Her lab values all look fantastic. Summary: she's doing everything she should be. They are planning on extubating her tomorrow morning.

Just like her first heart surgery, it was really hard to see her like that,  but we know that ultimately she will be better off now that the surgery is done. She'll be in the cardiac ICU for a few more days and then go back to NICU until it's time to go to Boston.  Thanks again for all your love support!!

 Before surgery and a brief moment without her replogle 

One down, (hopefully only) One More To Go!

Hi Friends,

We will update this post with some more details later on, but for the time being just wanted to let everyone know that Lily is out of surgery and recovering on the cardiac ICU floor. There were some hiccups, but they accomplished what they needed to and said she is doing well now with no major concerns at the moment. Thank you for your prayers!

/Joe

Surgeries near and far

What a week. On Tuesday, Joe and I met with Dr. Elliot to discuss the surgery(s) they perform in Boston. He told us there is a 2 month wait to go there right now. At first we were disappointed by that, but now it seems like it might be a good thing. He also informed us that the cardiologist would be by later that day to talk about Lily needing heart surgery as early as Friday. We were both shocked to hear that. The cardiologist explained that since we have to wait to go to Boston, it would be good to close her VSD now and have that out of the way before her esophageal atresia repair. Her heart will be in better shape going out there. They could do the esophagus surgery without closing her VSD, but overall it will be better if they close it now. So Friday morning at 7:30am she's going back to the OR 😳
Today I met with the cardiac surgeon to discuss the VSD closure. It's an open heart surgery, meaning they have to stop her heart and have her hooked up to a bypass machine to continue circulating her blood throughout her body. They will remove the bands they placed on her pulmonary artery and place a graft (from a cow) over the hole between her ventricles. VSD stands for Ventricular Septal Defect for anyone that needs a reminder. She'll be in the OR for close to 6 hours and she will go to the cardiac ICU for recovery. After a few days of recovery there, she will come back to the NICU until it's time to go to Boston. The surgeon said she could safely have another surgery 2 weeks after this surgery, but ideally he would want them to wait one month. Lily's having a CT of her heart tomorrow to give the surgeons a good view of her heart before the surgery. She has to have anesthesia for the CT scan because they need her to be still and also have a lower heart rate.

So in Boston, they will likely perform a surgery to stretch her esophagus. They use a method that uses traction. It's about a 2 week process of stretching, and then if the esophagus is stretched far enough they connect the two ends. If the stretching doesn't work, then they will take part of her stomach, colon, or small intestine and use that as like a bridge between the two ends of her esophagus. Dr. Elliot seemed confident that the stretching would work for her. If all goes well, she could be out there as little as a month. We're still unsure how our family situation is going to look for that time, but we're hoping that the covid19 craziness will be less crazy mid summer, making travel easier.
Sorry if this doesn't make much sense, I'm rushing to finish so I can get some sleep 😆

Thanks in advance for all your prayers for this big surgery.

3rd Gap Study

Lily had her 3rd gap study on Tuesday. Unfortunately,  the results were not what we we were hoping for.  The gap actually grew bigger,  from 3.5cm to 4.5 cm. The surgeon is recommending that we go to Boston Children's Hospital where they have a whole unit dedicated to EA and the surgeries to repair it. Transferring out there is a lengthy process, so we will be staying put for probably a month yet. Dr Elliot is going to discuss more details with us next week.
Please pray for us as we try to figure out what this will all mean for our family. Thanks

Happy Mother's Day

Happy Mother's Day! I had to share this post I saw in a Facebook group I'm part of for parents of kids with EA ❤

To the mom who didn’t get “just a healthy one”:

A healthy baby .
That’s what you want.

Boy or girl? Doesn’t matter.
Just a healthy one.

With ten perfect fingers and ten perfect toes.
A tiny smile and button noes.

A brain that works as mine and yours.
Tests coming back with perfect scores.

A heart that beats strong—the rhythm of drums.
And the in and out breath of healthy lungs.

But then you find out it won’t be so.
An unhealthy child— so much unknown.

A journey full of winding roads.
Ups and downs. Such highs and lows.

A little one fighting for their life—
And you, strong beside them in perfect stride.

Just pushing them forward with all that you are— a mother who hasn’t backed down thus far.

This motherhood it will indeed be hard.
The heartbreak will leave inevitable scars.

Not a motherhood you had ever planned for—
But it won’t be less. It will be more.

More love needed and more to give.
An understanding compassion that is so so big.

More strength than you had ever known.
A faith in God and Him alone.

You’ll learn to hope beyond all reason.
And lay down burdens in every season.

You’ll fight and give up and fight some more.
You won’t be stopped by seemingly closed doors.

You’ll give more than you knew you could.
And though you’ll grow weary you’ll still see the good.

Yes this child— unhealthy as they may be.
This child has allowed you so much to see.

Joy and beauty.
Pain and sorrow.
A gratitude for every single tomorrow.

This child is adored— a gift from above.
A newfound passion full of motherhood love.

So this is to the mother of an unhealthy child.
Who holds up her head, moves forward and smiles.

Your motherhood was not the way that you planned.
But today you love more— and stronger you stand.

Quick Update

Good news! We have a time for Lily's next gap study. Her 3rd gap study will be Tuesday, May 12 at 0830am. It sounds like the ORs are opening back up and they are doing more and more elective surgeries, so hopefully we won't have to worry about getting rescheduled this time. Lily is 10lbs now! I can't believe how big she is. I caught a few smiles on camera recently, so enjoy some cute pictures :) 
We also celebrated Rose's 2nd birthday this week. I am so grateful for her. She is a ray of sunshine in our lives.

100 Days

This past Tuesday marked 100 days since the girls were born, and 100 days of NICU for Lily. My mind can't really comprehend that. 100 days seems so long. The time has gone so fast, which I guess is a good thing. I'm hopeful that the remainder of her time away from home will go just as quickly.
I can't help but feel sadness when I think about it though. I am gripped with grief sometimes when I think about how I won't get that time back with her at home. I will never have her first few months of life over again and they were spent in the hospital, filled with strangers and surgeries and lines and tubes and xrays. I know I should be grateful that she's doing "well." She's stable, and just that fact that she's here is kind of a miracle when you think about all the things that were needed and are still needed to keep her alive. But I still grieve the loss of normalcy and the loss of expectations for what our lives would have looked like with all 3 girls at home.

But enough reflections for one day. The surgeon tells us that Lily's next gap study will be mid-May, so probably in a couple weeks from now. Dr. Elliot told Joe after the last gap study that if her esophagus has grown and the gap has become smaller, then we will stay the course and hopefully repair her here when she hits the 2cm or less mark. If she has not had significant growth, then we will likely start the process of transferring her to Boston. We don't know what that would mean for us as far as jobs and who would go out there with her for how long. It's a huge questions mark, or many question marks really. I've heard that it can be difficult getting insurance on board with the transfer. We would really appreciate your prayers surrounding this. I can't wait for the day when I can give the news that she's coming home. Somedays it feels like it's so far out of reach.

I do have some good news now! The cardiologists are very pleased with how Lily's heart is doing. We thought she may need to have her VSD closed as early as 2 months old, but her pulmonary artery bands are holding up and she continues to have near perfect oxygen saturation and lab levels. They still anticipate having to surgically close the VSD, but the longer we can put it off the better. Open heart surgery isn't easy to recover from for anyone, let alone a small baby. The cardiologist said we can stop doing echocardiograms to monitor her heart until there is a need for it. They were doing an ECHO every other week, but now we don't need one unless she's about to go to surgery for her EA repair or if she starts to be symptomatic (low oxygen saturation etc.)

Cora is doing well. We just increased her reflux medication dose because she's getting bigger. 12lbs! She's a pretty good night time sleeper now which we are so grateful for. Rose is going to be 2 in a few days! We got a play structure/swing set for her birthday present. Joe and his brothers put it together last weekend. She is beyond excited to play outside every chance she gets. She spends a lot of time at home these days (as most of us are) and loves to get away and go for a ride in Daddy's twuck :)

As always, we are so grateful for all the love, support, prayers, and gifts. We have been blessed by you. Love,

Heidi