NICU Warrior Mama Stories: Gina

In the United States, 1 in every 4,344 babies is born with Hypoplastic Left Heart Syndrome (HLHS), a complex and life-threatening congenital heart defect that requires immediate and ongoing medical attention. Among these brave little fighters is Penelope “Penny,” a resilient baby girl whose journey has touched the hearts of many. Penny’s story heartfelt story, as told by her parents, Gina and James, has a rough start and a happy ending. For four long months, Penny fought for her life in the NICU, surrounded by skilled medical professionals and the unwavering love of her family. While Penny battled health challenges, her parents and three sisters waited with hope, faith, and prayers for her recovery. Here is their inspiring journey, highlighting the strength of family, the power of resilience, and the importance of community support during the most trying times.

Jan 26, 2020

Baby update 3.0

#penelopelynrose is here, the girls have a new sister and we have a new daughter!!

Blessed and incredibly thankful, God truly was with us - although it was quite stressful at times - there was an overwhelming peace. So thankful for the clinical team and all of your prayers!

Most importantly, so thankful for my wife, Gina. She was amazing, so strong and impressive with her delivery. Love, love, love her!

Feb 14, 2020

Last Friday, we got exciting news that extubation was

"coming soon" for our #penelopelynrose. Over the past 7 days, each day was ushered in with enthusiasm and hope. As the days went by, it started to feel like a yo-yo, a rollercoaster of emotions. Today, we enter the weekend with our hearts heavy and a pending trip to the catheter lab for our precious daughter.

The past three weeks have been faith testing and challenging, more specifically this last week. Our hearts can't help but groan for our daughter. I wouldn't wish this on anyone, to watch an innocent baby suffer (especially your child), I am convinced, is life's worst experience. Her silent cries and grimaces pierce the most vulnerable depths of my heart.

We found out today, after a CT scan, that Penny has a pinched ascending aorta and Sono shunt. This is coupled with a recent diagnosis of a UTI, and a failed CPAP trial. If they are unsuccessful in the cath lab tomorrow, it could mean another open heart surgery.

How can this be?!? Why is this happening? The emotional toll and drain has led to numerous breakdowns, and the feeling of helplessness, borderline hopelessness.

I really can't adequately describe the pain, or sadness this has caused. It's like God I trust you, but really?

Why? I am running out of feel good encouragements and words to comfort my wife. I try to think and remember all of God's blessings and faithfulness. I start counting my blessings, and appreciative of the smiles  on our other girls. I think things could be worse.., etc.

But even in the midst, and eye if this storm I will rejoice that we have a Savior and Comforter. Even if I can't feel the comfort, I know and believe He is there. I pray that God shows mercy on our sweet girl and that He can still intervene. I believe He's caught every tear we've cried and knows our hearts better than we do. I ask that you continue to praise Him in trials, that you pray and ask God to grant us strength and perseverance. I believe He has brought Gina and myself together to walk us through this. I am so thankful for her.

I am often told that God gives people things that they can handle. Maybe I should pray that I am weaker and He spare my daughter's sufferings.

I know that He will make something great of this and her life. It's just really hard to watch in the front row.

February 26, 2020

Penelope Update:

I wish I had better news to report. It appears that post second surgery, she has once again plateaued in recovery, and in some ways gone backwards. She's requiring more support from the ventilator and the care team has kept her more sedated.

The team was discussing options for what's next... she is currently getting an echo, depending on that outcome they may need to move forward with either another cath or another CT scan. Both things could potentially set her further back.

Today marks her 32nd day of life. The initial 8 days we were able to hold her seem like a distant past. It just breaks our hearts to see the lack of progress and the condition she is in. We get streaks of hope when she shows improvement, but that's usually followed by a setback or two.

We try to continually remind ourselves that God is good, even in shitty situations. We need you now Jesus in a major way. Please continue to pray for healing and the care of our sweet #penelopelynrose. Pray for #mamabear Gina, that she receives God given strength, peace, and comfort. Any words of encouragement and/or prayers are greatly appreciated.

We just want our baby girl home, awake, and healthy .

Thankful for all the prayers and support. The little things matter. Every morning when I arrive at the hospital, the security guard at PCH greets me with enthusiasm and calls me a king. He shares that he's praying for me (l've never told him what we are going through). As cheesy as that is…little acts of encouragement, connections of humanity help sustain hope.

Come on baby.

Mar 18, 2020

Penelope update: things have been much less scary since she became stable enough to be extubated. She's also become a little more portable since more recently having her chest tubes and arterial line removed. She's still tethered by her NG tube, 02 nasal cannula, BP cuff, and PICC line, but I no longer necessarily need a nurse to help me when I want to hold her. It's crazy how much we love this girl. We want to take her home so bad! The main barrier to that now is making sure she can get enough nutrition (that's difficult for babies like her for multiple reasons). When we do go home, she'll likely still have the NG tube and possibly oxygen in addition to lots and lots of medications.

It's been extra stressful having to deal with Penny being hospitalized during these weird times. I should have been spending the nights with my husband in the days after losing his dad, but instead I've been at the hospital. And increasing visitor restrictions threaten to take away some of our sources of respite-others staying at her bedside while we spend time together.

So l'm more focused than ever on the goal of getting her home, and it's finally starting to feel like a realistic goal in the foreseeable future.

May 26, 2020

Happy 4 months to Penny! Finally-a monthly photo shoot from home. You might notice no NG tube and think she's graduated from it? But no, she had just puked it out, so I took the opportunity to take pics of her cute, unobstructed face. Unfortunately vomiting continues to be a problem for Penny every day. Despite that, look at those chunky thighs, arms, and cheeks! In other updates, we recently had a brief visit to the ER because she did not tolerate a medication wean. We were amazed and thrilled they didn't admit her overnight. She also saw ophthalmology for some findings in her right eye, but fortunately it seems like these issues are likely to be self limited. Please pray for continued improvements for this girl! She's been through so much and is super sweet.

July 21, 2020

Penny update: I'm confident she's going to get through this, but she's really had some ups and downs. She's still requiring bipap, which is a scuba-like mask that covers her whole face, and she hates it. There's been talk of her possibly needing to be intubated again tomorrow if things don't improve. Most recently she's oxygenating better and the left lung is sounding better, but things are constantly changing. The team is doing a good job of balancing her comfort and her ability to be awake enough to breathe/cough. The happiest I've seen her since surgery was last night when I was FaceTiming the girls and she heard her sisters' voices.

They miss each other so much. Don't tell Charlotte I'm posting the video of her soothing her baby doll.

Aug 12, 2020

Today, #penelopelynrose graduated out of her NG tube.

No big deal, right? Wrong.

This is a testament to several things:

• A mother (Gina) who was committed to pumping for 6 long months. Somehow, miraculously maintaining her milk supply through very stressful times. I am impressed, in awe, and very proud to call her my wife.

• The resilience of the human spirit. Calling Penny a warrior may be cliché. I honestly don't have a better description for her spirit. She is relentlessly resilient. She is truly a gift from God.

• A community: albeit...Facebook, friends, family, our church in constant prayer and thoughts. We have felt so encouraged by the outpouring of empathy and love. Thank you all from the bottom of our hearts.

• Last, but definitely not least. We had faith. Through the grimmest moments, where our souls just ached for our girl... we never lost hope. We never lost faith. We felt God's presence and reassurance. It wasn't easy. We love Him because He first loved us.

2020 got a whole lot brighter today. We've spent over

100 days this year at PCH in the CVICU. Our family has been apart. We have experienced loss. Our lives were uprooted. The world stopped with CoVID. Yet God remained, all the glory to Him.

Penny's story is long from over. She has many challenging days ahead. But we soak up the joy and bask in this moment of progress, peace, and happiness. Thank you to all who have been a part of her story and life.

Aug 26, 2020

I'm on time for once with Penny Lyn's photo shoot. She is 7 months old today and also 6 weeks past her most recent surgery, which means she's no longer on

"sternal precautions" (so we're allowed to lift her under the arms now and do tummy time). She's doing great at home. We did have to put her NG tube back in because she's still on meds for withdrawal, and she started to withdraw without the tube-apparently she was spitting out significant amounts. But these meds are being weaned, more successfully than when it was attempted before her most recent surgery. So not much longer with the tube because she's eating like a champ. It's amazing-she went from being fed exclusively through her NG tube to now exclusive breastfeeding, now that she's no longer vomiting multiple times a day.

Penny's remarkable journey clearly is one of incredible resilience and hope. From the moment she entered the world with Hypoplastic Left Heart Syndrome, Penny has faced challenges that would test even the strongest of spirits. Yet, through every trial, her parents, Gina and James, have demonstrated unwavering faith and love, rallying not only for their daughter but for each other and their family.

After four long months in the NICU, the triumphs and setbacks have shaped their lives in profound ways. Each update tells a tale of determination, from the emotional rollercoaster of surgeries and recovery to the celebration of milestones like her graduation from the NG tube. Penny's journey is a testament to the power of community, the strength of familial bonds, and the grace that can be found even in the darkest moments.

Penny's story is far from over, and with continued love, prayers, and medical care, there are brighter days ahead.  She is a true testament to the warrior spirit that resides in every child fighting against the odds. Gina’s advice to other moms with babies in the NICU is that even though it’s hard to believe now, please remember that this hospital setting is temporary. “‘For I know I have plans for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” -Jeremiah 29:11 And today on Mother’s Day, we celebrate Gina, a NICU warrior mama who’s been there.