MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Somewhere Over the Rainbow

OUR LITTLE ANGEL IS IN HEAVEN

After my doppler yesterday, the doctors agreed that the time had come to deliver the baby, that it was too risky to wait any longer. Marco Luis was born yesterday at 11:50am via c-section and weighed 1 lb 10 oz. It was very scary when he was pulled out of me as he did not cry. The NICU team started working on him right away. My husband was standing behind them as they were trying to stabilize him. After a few minutes, the NICU doctor came over to me and informed me that Marco's jaw was locked and they were therefore unable to intubate him. She said that the prognosis was very poor. They wisked him off to the NICU as my husband followed. My husband came back to me with the NICU doctor, ENT and social worker while I was in the recovery room. Marco was being kept alive by CPAP at that moment. They told us that the only option for him was a tracheostomy, however there was guarantee that it would work. Additionally, there were other problems with him (as suspected): his hands semi-closed, his posterior fontanelle (soft spot at the top of his head) was very large - which meant that there was a problem with his skull bones. His ears were also low-set and small. My husband and I considered everything and decided that the best option for Marco was to not do the tracheostomy and to let him go. Before he was born, we had decided that we would not want to take heroic measures to keep him alive considering all of the challenges he would have to face. In keeping with that decision, we knew that we were doing the right thing even though it was so very difficult. The doctors, nurses and social worker were all very supportive of our decision. While I was still in recovery, my husband had some alone time with Marco in the NICU while he was on CPAP. Also a priest came and did a baptism. They finally wheeled me down in my stretcher to the NICU. I was struck by how small Marco was. He looked like he was struggling to breath - even with the CPAP. He was wimpering. His feet were so small and perfect. We gave him a little bath and then were able to hold him for a little while (still on CPAP). At our request, they also gave him some Ativan to help make him a little more comfortable. When we were ready, they removed the CPAP from his nose and positioned him on his tummy laying on my bare chest with my gown covering him. I was wheeled back up to my room with him on my chest, my husband at my side. The NICU nurse practitioner came in our room about every 10 minutes to listen for his heartbeat. We laid together as Marco passed peacefully. We talked to him and kissed him. As difficult as it was, we did feel some peace. We know that he is with God in heaven now looking over us. He will forever live in our hearts as our son. We want to say thank you to everyone for all your love and support you've shared with us on our journey. We are so greatful.

  • Im so sorry..my heartaches for you and your lil angel Marco...i so wish things could be different for you,you did everything possible for your son...he will always be with you...im here for you and my thoughts are with you...hugs..chantellex

  • Lib and Bruno...

    My heart has broken for the both of you.  What a hard and difficult thing to have to deal with.  I'm sure you made the right choices and that little Marco first felt the love and warmth of his mommy and daddy before going straight to heaven.  Short as it was - his life was surrounded by love.  I sent you an ecard and please let me say again my deepest sympathy to you both.  One door closes but you will see that another opens...

    Lots of love,

    ~Uncle Brion~

  • Oh sweetie, I am so terribly, terribly sorry.  To say hello and good-bye so quickly is heart-rending.  I've been there myself and remember just how it feels.  Know that you, Marco, and your family are in my thoughts and prayers.  

    Hugs,

    Mary

  • Libby and Bruno,

    My heart is just breaking for you.  I know how excited you were to welcome this little baby into the world and he was so blessed to have had you as parents, even if only for too short a time.  This last month must have been incredibly difficult but I am so glad that you and Marco found peace at the end.  Take care of each other as you grieve, and know that all of us are thinking of you and sending our fondest regards.  Bravo on your strength in writing this blog, which will surely help other parents faced with similarly difficult decisions.  I am totally in awe of your thoughtful, loving and considerate words.

    Best to you both,

    Shannon

  • Thinking of you.

    Rachel

  • I am so so sorry for your loss.  I am glad the too short time you had together was beautiful and peaceful. I am thinking of you.

    Marissa

  • I am so sorry for your loss, no parent should ever have to face that kind of pain I hope that you are able to find some comfort and healing during this hard time.

    Katie

  • Libby and Bruno,

    Im so sorry for your difficult journey and loss of your little angel Marco. You'll always share a special bond with him. My thoughts and prayers are with you.

    Jen

  • I am so sorry... so heart breaking...  May God comfort you and carry you through this journey...  You will be in my thoughts and prayers.

    Page

  • Libby and Bruno,

    My heart is aching with you. I'm so sorry for your loss. I'm glad that you had some time with Marco however short it was. You have shown incredible strength and what you two did was truly selfless. I'm so glad you have such a supportive family. You are in my thoughts...

    Love, Audrey

  • Libby and Bruno -

    I am so sorry your journey ended in the loss of Marco.  My heart, thoughts and prayers are with you both.  

    Hugs,

    Donna

  • Libby and Bruno,

    I am so sorry for your loss of your son Marco,  I'm  actually lost for words but your family will be my thoughts and I hope you'll find comfort with us here on Share in the coming weeks. Marco will always be in your heart.

    Julianne.

  • I'm very sorry for your loss.  I, too, know the pain of losing a child and I truly grieve for you and your precious angel, Marco.

    You should take comfort in knowing that all your baby knew was the intense love that you and your family lavished on him.

    I'll keep you in my thoughts.  I hope that time can ease your pain and that you can find some of the support you'll need here at Share.

    Please take care of yourselves during this difficult time.

    Megan.

  • I am so sorry for your loss.  You, your family and your beautiful son will be in my prayers.  

    -Katie

  • I am so sorry that you had to make such a tough decision.  I know that the decision must have been so difficult but it was what was best for Marco.  I just told my Mom that in the beginning when the really tough decision had to be made I never consider the possilblities of what Joshua would be like at 3 or 5 or as a teenager.  We are lucky that he is doing fairly well but I never know his life would be so hard and painful.  I don't know that I could do it again to another baby.  

    Marco can rest in peace and not be in pain.  He only knew the love of his parents and not the horrors of being so very small in the NICU.  

    You were very heroic.  

    Think of you,

    Erin