Nora – 76 Days Old

Today is my hubzbind’s birthday. Our joke in the family is that he gets to be boss again because we’re both the same age now. My birthday comes almost a whole month before his – so during that time I get to be the “boss” of the family because I’m older. (I think the kids actually started that). I spent 25 days on this earth as a tiny infant before Baby William (Billy) made his grand appearance. I like to speculate that our pre-birth little souls were best friends in heaven and conspired to meet again someday – thus the term “a match made in heaven”. Over the course of our lives we may have had some close encounters at Kings Island (local amusement park that we both frequented) during our teen years. You would think we would have HAD to have at least seen each other in passing on one of those hot carefree summer days. Who knew then that we were to someday be husband and wife — parents of 3 beautiful children together.

I’m so blessed to be your wife, William. You are an amazing husband and Daddy. Things aren’t so easy right now, but I have hope that there are brighter days ahead for us. Thank you for your strength and your comfort, your tender hugs and kisses that are always there exactly when I need them, your selflessness, your guidance, your optimism, your hard work, your generosity, your fairness, your honesty and your comic relief. It’s nice to be able to still laugh despite what we are going through. I can always count on you to cheer me up when I am sad, or to be the sound voice of reason when I am emotional. Funny that even though it’s YOUR birthday, I’m the one who feels like I’ve gotten the gift of you as my hubzbind. Happy Birthday, my sweet.

I found the one my heart loves.
(Song of Solomon 3:4 NIV)

Love, Your Wife

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We have some extremely tough decisions ahead of us as it pertains to Nora’s medical care. I’m humanly worried and terrified of making a wrong decision. I woke up this morning with the sharp blade of fear and uncertainty stabbing me between the lungs. In a desperate struggle to escape from it, I grabbed one of my devotionals. Plainly printed in black ink, I read the words “He will reach to the very limits of the universe to help you take the right road.” {DEEP SIGH!!!!!!!} And in that, I fully trust.

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Thank You, God for speaking so clearly to me. You speak to me through Your written word, through the mouths of others, and through the beauty of Your creation. I find myself in constant conversation with You, eager for Your insight. Your voice, while not audible to me is loud and clear in so many other ways. Thank You!!!

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Praise be to God, Almighty!

This is what the Lord says—
your Redeemer, the Holy One of Israel:
“I am the Lord your God,
who teaches you what is best for you,
who directs you in the way you should go. (Isaiah 48:17 NIV)

(and of COURSE I just discovered this to be the “Verse of the Day” on my YouVersion Bible app, AFTER I had just written about this because it was EXACTLY WHAT I NEEDED. He tells me once, He reminds me again and then He verifies it. Wow. Chills. I hear you, God! 🙂 )

14 thoughts on “Nora – 76 Days Old

  1. HAPPY BIRTHDAY WILLIAM!!!! YOU AND ALEISA HAVE A BEAUTIFUL FAMILY. LOOKS LIKE YOU HAD A WONDERFUL BIRTHDAY. ALEISA THANK YOU FOR ALL THE PICTURES TODAY, I TRULY ENJOY EACH AND EVERY ONE. LOVE THE ONE OF NORA ROSE RAISING HER LITTLE HAND. IT DOES LOOK LIKE SHE IS PRAISING GOD. ALL YOUR FAMILY IS AMAZING. ALL OF YOU ARE THERE FOR EACH OTHER AND IS WILLING TO HELP LITTLE NORA ANY WAY EACH OF YOU CAN. I SEE NOTHING BUT LOVE IN YOUR FAMILY. NORA IS SO BLESSED THAT GOD CHOSE YOUR FAMILY FOR HER TO BE PART OF. ALSO YOUR FAMILY IS BLESSED THAT GOD CHOSE YOUR FAMILY TO GIVE HER TO. GOD KNEW THAT YOU ALL WOULD LOVE NORA SOOOOOOOOOOOO MUCH. HAVE A GOOD NIGHT’S SLEEP AND A BEAUTIFUL DAY TOMORROW. LOVE TO YOU ALL. GOOD NIGHT AND GOD BLESS.

  2. Raise your hand…raise your hand…if you’re SURE! 🙂 I know it’s an old commercial jingle but it is what Nora’s adorable picture made me think of! And, she is SURE…sure that she is loved but God, her mommy, daddy, siblings, grandparents, family, friends, and the list goes on and on… Have a great day!

  3. The medical decisions are the hardest to be comfortable with. We’ll continue to pray that God guides you and helps you find the best pay for Nora. She is so blessed to have you and William as parents, and you are so blessed to have her as your daughter. That is truely the match made in heaven. 🙂 God Bless

  4. How awesome was that “plain as day answer!” Continuing to pray for you, your peace, your strength. Wish I had the answers to give you, as Im sure everyone else does. But, I know GOD has all the answers, we just have to be still & listen. I BELIEVE IN YOU, you will make the best decision for Nora Rose.

  5. Good Morning sweet little Nora.. my prayers are always coming your way for you and your awesome family.. Always love seeing your sweet face.

  6. Happy birthday to your amazing husband!

    Being a critical care nurse, I completely understand the difficulty of the decisions you face. We have a saying in the ICU: just because you CAN, doesn’t mean you SHOULD. Technology and medical procedures have come so far, it is VERY difficult to know when to stop. You are on the right path, relying more on God to help with the decisions you face. I hope you are surrounded with a good medical team who will be honest with you; in my experience, that hasn’t always been the case. I will continue to pray for you and your husband in these days ahead, that God will make clear the path He wants you to take for your daughter and your family.

  7. Wonderful tribute to your husband – and yes it does seem that this is a marriage made in heaven. Just like the little precious bundle that God has given you to love, care for, and He knows all you are going through. Praise His Holy Name. I will keep my prayers going continually for you in the decisions you have to make.

  8. I’ve been reading your blog (I randomly found it one day, but I don’t for a second believe it was by circumstance!) for a few months now. I think about your sweet family quite often and pray for you each morning as I check up on your latest entry. You have become part of my morning routine and yet we’ve never met–how beautiful! Reading this entry brought a verse to mind that has carried me through many rough nights. It’s always at night in the dark that satan trys to attack me–when my mind is vulnerable and racing. But our God says in Psalm 46:5, “God is in the midst of her, she will not be moved; God will help her as morning dawns”. Just remember that God is what is solid and soverign in you. At night, as the dark thoughts wake you up, remember he’s carrying you to the dawning of morning as He always has. Give your thoughts to Him (and if you’re anything like me, try not to take them back!!) and be amazed at the inexplicable things He does! You are part of something so big, so great, and yet so difficult. I pray for your strength and the decisions coming–may the Lord give you peace and confidence.

  9. Aleisa, I was talking about Nora with a friend who is a doctor at Miami Children’s Hospital. Of course I mentioned how cute and chubby she is and that she weighs more than 3 kg now. I also asked him to look for me an article that appeared in Pediatrics ( the journal of the American Academy of Pediatrics ) regarding the hospital care of children with T18 and T13. As soon as I get it I will send it to you. He told me that you’re lucky because Cincinnati Children’s is one of the best pediatric hospitals in the USA. Talking about the possibility of a surgery to
    repair Nora’s heart I asked him what his opinion was ( in general) regarding children with trisomies and the futility policies in hospitals. I have to tell you that he’s a pro life doctor and very compassionate but the general opinion among doctors in most of these cases is that usually is not worth to perform these kind of surgeries. I tell you this because I think you’ll have to fight in case that you decide Nora undergoes the surgery. Don’t be surprised , give up or become frustrated if the doctors tell you that she’s not a good candidate for surgery. Another option in case that Cincinnati Children’s doesn’t accept her for surgery is St Jude Hospitals. In case you need sth he works at
    Miami Children’s so just tell me.
    This is a link to a document regarding hospital treatments for children with T18 by University of Columbia Children’s Hospital in NYC. I think it’s pretty interesting. The more information you have the better.

    Click to access Newborns_with_Trisomy_18.pdf

    I keep on praying every day for sweet Nora. I pray for her health and for peace and wisdom for William and you and also wisdom for her doctors so you all can take the best decissions on Nora’s care.
    Tons of kisses for the little muffin.

  10. I have been keeping up with little Nora daily through the posts of Shelly Hissott. I have been so touched by your journey and have often wanted to respond, but wasn’t sure what to say!! I am a NICU nurse who first was so touched to hear you speak of Dr Reuter so kindly in your blog the day after Nora was born. I have worked with him for over 15 years and he is so compassionate…..I was not surprised to hear he treated Nora (and you and William) with respect and kindness!! He truely loves his job and the babies.I have the utmost respect for him. I work with parents everyday who have such hard decisions to make for their babies. If I can give you any thing that might help you, it would be to remember that there is more than one medical opinion on a subject. Research them all and definitely get a second opinion. I have seen one Dr tell a parent there is nothing that can be done, only to have another Dr come on a week later and say “let’s try…..” and have it work! There are Children’s Hospitals in different parts of the country trying different protocols so ask about those too!! I hope I have helped a little!! Babies are amazing, strong, resilient……..as you well know…..and getting to know your Nora through your blog has been a blessing!!! Thank you for sharing her!! I will keep you all in my prayers!!!

  11. Dear Alesia–I have been praying for your family and precious little Nora Rose. My heart aches for the decisions you are faced with making. I have been a nurse for 36 years, working inpatient, ER, outpatient, Case Manager to administrator and have seen amazing strides in what can be done for our littlest, most vulnerable babies. I do agree with a previous poster, Heather, who said that “just because we can doesn’t mean that we should”…which makes decisions such as yours even more complicated. My advice to you is to find one medical team that you are comfortable with and trust. While it is true that sometimes one team will say ‘no’ and another will say ‘yes’ with good results, these situations are the exception rather than the rule. Medical teams look at many aspects of care, and alternate options, when determining whether or not to offer extensive procedures to all sick infants–not only T18, 13 and 21 babies. The deciding factor should be to weigh the consequences of doing a procedure vs not doing it, and then do it if the benefits out weigh the risks and will give the child a better quality of life. Keep following your heart, and your prayers.. I will pray that you will know in your mind, and have peace in your hearts that you have done the right thing, where ever this leads you. Blessings to you and your family.

  12. What a beautiful post. Thank you and happy birthday to William.
    An ICU nurse earlier wrote the statement “just because you can, does not mean you should.” I find this very troubling. Every child born with trisomy 18 is unique, with a unique path. We know that most die early in pregnancy yet some live for decades. It is unfair to brush any of them with a broad stroke or to apply statements that are either value laden or potentially discriminatory.

    A recent publication in the medical journal Pediatrics (the most prominent pediatric journal) concluded that it is inappropriate to deem all children with trisomy 18 as universally lethal. A publication that is due out in the same journal this month will describe the positive quality of life of surviving children but will also stress the diverse outcomes- different care plans, and different lifespans- yet all positive and enriching for families.

  13. Nora,

    Everytime i see your beautiful face my eyes become teary… We love you, think about you, and pray for you:). God bless your little heart.

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