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Penelope’s Grand Entrance

Penelope is only a few weeks old and she’s already done things we’ve never done in our 30+ years of life… MRIs, EEGs, blood panels, a spinal tap, an echocardiogram, urine exams, innumerable tests that I’ve never heard of and would like to never hear about again. Here’s the story.

September 26 was the best day of our lives. Penelope Joan was born at 4:18 am, weighing 7lbs 13oz, 21.25 inches long (SO LONG!). Perfect in every way. Fast forward to the worst day of our lives – September 27. She had been having episodes with rapid fire hiccup-like movements. Several caregivers told us not to worry, just the hiccups, just adjusting to life outside the womb. One angel of a nurse Lyssa watched a couple of videos Javier took of the episodes and reported it to the neonatologist, who very discreetly took her to the nursery without saying a word to worry me (thank GOODNESS) and immediately had her checked into the NICU when she saw one of the episodes occur. Turns out these episodes were seizures.

September 27 was a long, long, LONG day. I’ve never cried so much in my life. We only had bad news: seizures, possibilities of infection, meningitis, metabolic disorders, or brain development issues. No real answers about whether the seizures were getting worse or if they were a permanent feature of life. We were absolutely miserable until we met her neurologist Dr. Puri. He very carefully gave us the facts: she had an MRI and it showed some damage to her occipital and left-side parietal lobe. The damage was caused by a stroke that likely occurred during labor. Fortunately, 2 subsequent MRIs showed that the damage was limited and not spreading or getting worse. Then the hunt began to find the cause of the stroke and determine if it was likely to happen again.

They hooked her up to an EEG, which quickly became my least favorite machine on the planet. It’s designed to monitor her brain activity to record any seizures. While she was hooked up to this machine we weren’t allowed to stimulate her in anyway, so there we were with a 2-day old daughter that we couldn’t hold, comfort, or cuddle. I distinctly remember thinking “if I can just hold her again I’ll never, ever complain about getting up in the middle of the night for her sake. I’ll never resent changing a diaper. Just let me hold her.” Meanwhile, they were dosing her with two different anti-seizure medications and two different precautionary antibiotics, and all I could think of was that her tiny body was too small to have all of those drugs in it at once. The 42 hours that she was hooked up to the EEG were the most painful, helpless hours of our lives.

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LES_4682LES_4677While she was hooked up to the EEG she underwent a variety of additional tests in the hunt for the cause of the stroke. She had an echocardiogram, I lost count of the number of times her heel was pricked for blood (over 60 during her whole NICU stay), and they collected her urine for other tests. They even tested my placenta for infection…which was a huge surprise to me because I didn’t know they saved it. All the while we continued to receive updates from her neonatologist and her neurologist that confirmed how healthy and normal she was despite her MRI, and how big of a surprise it was that she was in this situation at all.

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All we could do while she was hooked up to the EEG was put our finger in her hand.
Penny getting an echocardiogram while hooked up to her EEG

Penelope spent two weeks in the NICU. Javi and I wanted to be in her room for every day-time feeding and her feeding times were every 3 hours, so we’d mostly stay in her room the entire day with quick breaks to feed ourselves. I was nursing and pumping so that she could have breast milk at night when I wasn’t there to feed her. Javier’s parents arrived at the start of the second week, and they accompanied us in her room for that whole week before we were discharged.

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Our first time holding P after she was disconnected from the EEG
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^^ getting a sponge bath in the NICU

Photo Oct 02, 1 51 38 PMIt was hard waiting on test results. Penelope was improving every day – eating all of the time and doing all of the normal baby things. Infection and meningitis were ruled out as possible causes of the stroke. She passed her eye exam, which was a big deal given that her occipital lobe received the most damage. She passed her hearing exam for the second time, and the occupational therapist was very pleased with her reflexes and muscle tone. By Saturday of the second week in the NICU we learned that the plan was to release her on Monday, October 9. She was healthy and stable without any diagnoses of metabolic disorders or otherwise. She had been seizure-free since her second day of life, and from what I understand, all signs point to the stroke being a one-time event with chances of recurrence at 3-4%. We have to wait until November for her genetic test results, and those tests would have us on pins and needles if she weren’t doing so well. We’ve adopted the “healthy until proven sick” attitude, enjoying her milestones and her overall health every day. We’ve been to the pediatrician twice and she’s gained two pounds since birth and grown almost two inches, which is quite a feat for a 4-week-old!

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Our first night home. We were up with her til 4:30 AM.
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Penelope at 3 weeks

Those first couple of weeks of Penelope’s life were difficult for everyone, but our girl handled it like a champ. We’ve been finding the silver lining of her NICU stay: she’s been on a schedule that they established, which is great. The alarms and hustle-and-bustle of the NICU have conditioned this gal to sleep through absolutely anything. Between all of the tests she underwent, we know ALL about the state of her health, reflexes, senses, genetics, etc. We will be watching her development obsessively, and she has follow up monitoring with the neurologist, geneticist, neonatologist, development clinic, First Steps Occupational and Physical Therapy, and regular pediatrician…in other words, she’s going to be very busy! The important takeaway now is that we have a beautiful daughter, she’s adjusting to life at home with us and the dogs, and we’re completely out of our minds in love with her. We want to send out a huge thank you to everyone who sent us messages and kept Penelope in their thoughts and prayers – your messages and prayers meant the world to us during a very difficult time. Our lives are better in every way for having her around and we can’t wait to see what the future brings all three of us!

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Penny’s first day home!
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** Update: Many people have asked how they can help. At the moment we have everything we need, but we are facing some unexpected medical bills and have set up a GoFundMe to help offset these costs. If you are interested in contributing, please click here. Thank you to everyone who has reached out to us over the last month – all of your support means so much to us!  

17 thoughts on “Penelope’s Grand Entrance Leave a comment

  1. So proud of you all, and most especially The Famous Sweet P! What a introduction to “Parenthood”, right?!

    Thanks for sharing the hardest chapter in your lives–We’re lucky to peek at what you lived through…

    Hugs from Southern California….soak up those late nights together nursing and cuddling, because you’ll blink and she’ll be grown–

    All our love and peace,
    Lisa and Fam!

  2. Estoy llorando. Thank you for sharing such a difficult time with us. I felt your pain, fear and love in your words. So proud of you and my Javi, and know that P is in special loving hands. I am reminded daily, “he who began a good work in you will be faithful to complete it” .

    God bless you and keep you safe. P is a true gift

    Besos. AnaMaria y Geri Bustillo

  3. Tears are rolling down my cheeks. But not in sadness. In awe of the care, love, persistence, strength, and connection that your family possesses. Baby P couldn’t have been born to a more suited, loving family.

    This girl is changing worlds already. Buckle up, baby!

  4. God bless you all. You little P- nut is so beautiful and lucky to have such wonderful parents. I’m sure I can speak for Audubon ICU/OHU staff when I say we will keep you in our prayers.

  5. We are so very sorry you and your sweet pea were stressed in her first few weeks. So happy she has rebounded and is doing so well! New parenting is difficult in the best of circumstances. Best of luck to you and Javier to maintain your strength in the face of adversity. Just wait until she talks back and wants a tattoo!

  6. Our son had an unexpected NICU beginning too. I couldn’t believe that was his beginning. But almost 30 years later, he is normal. Well, he ended up an attorney but otherwise a great person:) it gets a little better each week that goes by. Penny is adorable! Prayers are with your new little family. Thanks for sharing.
    Christina Wickham
    Roanoke, VA

  7. Life can certainly throw unexpected curves. I am so sorry to hear this news. I am happy Penelope is on the road to recovery. Keeping her in my prayers ❤️. What a sweet and tough little girl. Keep fighting Little P.

  8. Thank you for sharing the story of Penelope’s entrance into this crazy old world. The photos are so precious. Even though they portray a scary time, we can still smile knowing that those tubes and machines are gone and hopefully never to be seen again.
    Enjoy this dear sweet, beautiful baby. She is fortunate to have you strong, loving parents at her side. God’s blessings on you all.

    Soni Castleberry

  9. Thank you, Leslie – brave of you to share all of this and the pictures too – we love you and Penelope and Javi. Keep going, cuzins!

  10. So grateful the road to parenthood is becoming smoother for all of you, although you are certainly going to be in the fast lane for awhile. Y’all have been in my prayers, as I waited for “the rest of the story”. Those prayers continue. She’s a lucky and beautiful young girl. Hugs💗

  11. I’m crying as I read your lines, as a mother of two, I totally understand you. But God is in control of sweet P life.
    And He knows what is in storage for her.
    All my family have been praying for all of you.
    Thanks for sharing, abrazos

  12. So relieved for P., the McClure Clan and the Rodriguez family. She is such a bright, alert young girl.

    I can imagine your terror at the potential of menengitis. Our daughter was hospitalized with this potential when she was 4 weeks old. My heart broke to see them take a spinal tap from her small spine. I pray for your joy and peace of mind as you continue to receive good news of P.’S health.

    Take care of yourself as well. You will need strength for all those doctor appointments! Love, love, love every moment you have with P. As someone else commented she will grow so quickly. You will be amazed in a year or two when you look back at these early photos. XOXO

    Brenda Weeks

  13. Oh wow!!! She is absolutely beautiful! So very happy for you. Russ says, “OMG! Look at all that hair, she’s adorable! ” & “Miss & love you all! ” We’re so happy she is doing so well. I some how missed the birth announcement but think of you & Javier often & now Penelope, of course. Prayers and Blessings for you all! Love, Denise & Russ

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