We are almost outta here! While Boston Children’s has been great, we are ready to get back to house livin’ instead of hospital livin’! June’s chest x-ray and echo-cardiogram looked good! Her chest incision is healing up nicely as well as her chest tube wounds. She didn’t have a great eating day yesterday (fussy and not a lot of intake) and her weight is down just a bit. We are hoping to get back on track with that and then we are heading back to Maine (either tonight or tomorrow). All in all this girl has been such a trooper! Open heart surgery at 3 months old… I still can’t believe it. She is a strong willed little lady and I can’t wait to see her little personality shine! In the words of Willa Rambo, “When the clouds roll in rough, shine on Junie!”

Bustin’ out of the ICU! We are now on the cardiac floor and June had quite a big day! Her 2nd chest tube came out today along with the oxygen and feeding tube. She is now wearing PJ’s, feeding from bottles, and looking a lot more like her regular absolutely adorable self! She is still on some pain medicine to help her as she heals and slated for some follow up testing this week (EKG, echo-cardiogram, chest x-ray). If all looks good we’ll be outta here soon!

I got to hold June this am!!! She was awake and giving me some good eye contact (even though I felt like her eyes were saying, “Mom what the heck is going on here!”) It felt really great to hold her and give her gentle hugs and kisses.

June got one chest tube out today (a tube inserted in her chest to drain liquid post surgery). She’ll get her other one removed tomorrow. Plan is to move to the cardiac floor tomorrow or Monday to continue recovery in a less intensive setting. She is looking good, seems to be feeling ok, and again doctors and nurses reported in rounds today that they are pleased with her recovery progress. Dr. Kaza keeps saying that babies determine their own recovery route, there is not one clear path. June is on her own recovery journey, it may not be fast and furious but rather slow, steady, and with determination.

June’s recovery has begun! Our good friend Wynne made this heart collage for June’s hospital room entitled “Heart on Fiyer.” We love it and hung it up today!

June’s breathing tube came out this evening. She is on some oxygen to help her in this transition. She is still on IV fluids for nutrition but hoping to start some bottle feeding tomorrow. All in all a quiet day in the Cardiac ICU, we are taking our time removing supports to help her be as comfortable and successful in this transition time.

June is out of surgery! Dr. Kaza cut an incision in her valve to open it up and the pressure has already reduced by 50%. He also patched up the hole in her heart and he was pleased with the outcome. She is recovering in the cardiac ICU here at Boston Children’s and will be here for 1-2 days and then to the cardiac floor. She still has her breathing tube in and various IV’s/feeding tube. Over the next few days she will slowly come off these supports and resume regular feedings. We are relieved that the surgery is over and are gearing up to help June in her recovery. Thanks for the kind words, prayers, and support! XO

Chris, June, and I arrived in Boston last night in time watch the debate and have a beer in the hotel room. We got to the hospital at 7:30 this am for Pre-Op madness! June had blood drawn, an EKG, chest x-rays, an echo-cardiogram, and various meetings with doctors. She looks healthy and all cleared for surgery. She is first case tomorrow so check in is at 6 am. In addition to fixing her stenotic valve they are also going to patch the hole in her heart (atrial septal defect).

We are awaiting aunt Kay’s arrival, June is going to love some Kay snuggles! Thank you for the outpouring of love and support, June has a huge fan club and Chris and I appreciate hearing from friends and family from all over! We know she has a lot of people praying and sending positive vibes our way, THANK YOU! We’ll post an update on the blog sometime tomorrow post-surgery.

June was born with pulmonary stenosis which means the valve connecting the right ventricle of her heart to the pulmonary artery is super narrow.  Her heart has to beat quite hard to pump the blood through this narrowing. If you put your hand on her little chest, you can feel how hard her heart is working.  She has had about 6 echo cardiograms that measure the narrowing of the opening. Since birth, the opening has gotten more and more narrow. (If you want to read more about pulmonary stenosis: https://www.cincinnatichildrens.org/health/p/pvs) 

So good news is that as of now, her heart is still strong and healthy.  If we wait to fix this valve, however, her heart will weaken.  The time to fix it is now!    

So how will they fix it?  Well right after her 2 month birthday, we tried the least invasive procedure which was inserting a balloon through a catheter in her leg and up to her heart.  Three times the cardiac cath doc inflated the balloon in hopes of opening up the valve. The procedure was 0% effective. After the balloons were deflated, the valve when right back to it’s super narrow position.  So onto the next option…cardiac surgery.  

Cardiac surgery is scheduled for Thursday October 17.  There are a few options depending on what they see when they get in there.  They will either do a valvotomy (remove scar tissue on the valve) or valvectomy (remove the valve).  What we do know is that they will open her up on her chest and go through that way…open heart surgery.  After the valve is fixed, they will wire back together her chest cavity. We met her cardiac surgeon and he seems great. He was calm and reassuring. While we are super nervous, meeting Dr. Kaza and hearing about the procedure from him was quite helpful in our mental preparations. Here is a video of Dr. Kaza: https://youtu.be/1Cecx63YjJ8

So recovery is going to be tricky to say the least but we are in super great hands at Boston Children’s.  We’ll post to the blog with updates on our sweet JunieB!

We are prepping for June’s cardiac surgery on Oct. 17th. Prep includes putting on as many ounces as possible and keeping this little girl healthy. We planned to drive to Philly so June could meet Mimi and Papa along with aunts/uncles/nieces/and nephews. But the drive and exposure to many crowded places so close to cardiac surgery did’t sound like the smartest idea. So the family came to see Junie B. in Maine… not an easy feat but what an amazing trip! My heart is so full and happy after this past weekend, it was one for the memory books for sure! Operation see Junebug started with Alice taking Mimi and Papa to Newport, RI to spend Friday night at Rosie and Andrew’s house (with some Colin snuggles of course!) Then Nell picked them up in Newport and drove them to Kennebunk, Maine where Mary Grace met us. Sunday and Monday were spent exploring the coast of Maine, eating lobster rolls, beach walks, and snuggling sweet June. Cousins Amy and John had a huge, amazing, family dinner at their lovely home on Monday night. Tuesday am, Nell and Mary Grace road tripped it back to Philly with Mom and Mike. Everyone got lots of June hugs in, we felt the love in a major way!

A daughter, sister, grandaughter, niece, cousin, friend… Junie B. has a lot of fans already! I decided to start this blog so that all those who love this babe stay informed, if they’d like, on her adventures! Her early weeks/months adventures have included a medical helicopter ride and many pokes and thorough examinations by doctors/nurses. While pregnancy was super easy, June’s first few weeks have been kinda the opposite. We are navigating differences with her heart, blood counts, and ears but more on that later : ) Through Facebook, Instagram, texts, phone calls, and Facetime Chris and I have tried to fill people in on all the happenings. This blog, hopefully, can help streamline this communication!