Today my husband and I met with our palliative care rep and the neo natologist that will be working on Vayden’s induction date. We had a few questions as to what was medically available for him post birth and wanted to get her stand point on our choice to select comfort care vs. invasive care. I feel that in order to get the best care possible the Dr. needs to be on the same page with the patient. She is completely on board with us and actually praises us for the brave choice we’ve made.
This appointment did get me teary eyed, as she prepared us for how Vayden may look appearance wise and what to be prepared for post delivery, although such a sweet woman she constantly attached his name with phrases like “will pass shortly” or “these numbers don’t good”. She gave us a realistic outcome but also knew of our faith, so she gave us all the outcomes, both good and bad. Some that I was not even aware were possible. I was surprised to see how she made this situation not only about me but she also included Van. To his surprise he was told that he would be helping her out while she did the quick assessment on Vayden and how she felt that was necessary for the father to make memories. She was also very compassionate and understanding that in many cases things like this don’t truly hit the father until the baby is born, and she only expects him to be a tiny bit stronger than me, however she mentioned that in many cases the father turns into the complete wreck.
We were asked if we wanted to tour the NICU, we declined. We feel that if Vayden is meant to stay with us he will not even need to visit that side of the hospital. Not to mention no matter who’s child it is, the NICU is not always a pretty place. Special cases like ours deliver in special rooms with special pictures on the doors. The labor and delivery unit is separated by two sides, the joyful mommies to be and excited guest in the waiting room side, and the high-risk side. Even on today’s tour I could tell the difference. Less baby portraits hanging on the walls, the nurses stationed seemed quieter, and our palliative care nurse was well known, so sad eyes of sorrow hit us as they welcomed Debbie back again. It was like they knew why she was there with us and they knew our case was special aka high-risk.
My sleep is now being interrupted; two nights ago I had my first dream about Vayden’s birth. I’ve tried to daydream the birth out but have never gotten far, that night I had to fight my own self to wake up. This dream did not end good and we did loose Vayden, but what woke me up and kept me up the rest of the night was how fast it all happened, and how although I saw my precious sweet baby I didn’t pay close attention to him. In the dream Vayden was a standard baby outline, yet had a glowing gold color, I suppose how you would picture an angel. Once I was awake I was un able to go back to sleep and I cried and cried downstairs. Last night was not easy on falling asleep as I laid in bed wondering if I should ask for some type of sleep aid to make it through these next 6 wks.
Before my appointment today I was upstairs curling my hair and started humming the tune, “you are my sunshine”. It made me think of Vayden, so I quickly spoke the lyrics to the song…then got to “you’ll never know dear how much I love you, please don’t take my sunshine away”. A tear came to my eye as I said to myself this is the song I will now sing to Vayden everyday and when I deliver him
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Can't believe our little miracle is 3 years old!
11 years ago
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Hey Stephanee,
ReplyDeleteI saw your blog on facebook. I'm going to add you to my blog because i want to stay updated on you and Vayden.
Sierra
You are right, everyone needs to be on the same page for his care so it was good you met with the people who will take part in some of his care. It's good that they were honest with you and that they included Van. Sometimes the father can be forgotten in the midst of it all. You will be given a special room with a special picture on the door. My room was right beside the nurses station. When I arrived that day they had already placed a do not disturb sign on the door and they had the picture indicating bereavement hanging. A single leaf with a teardrop.
ReplyDeleteI think that is absolutely wonderful to sing him that song every day. It will be something special between you two. I believe he will be able to recognize it when he is born if you start singing to him now. He will be comforted by it. And that last line....it's so true.
Thinking of you...crying with you. Keep singing to him...you are loving him so well.
ReplyDeleteLove,
Laura
Stephanie, I am so moved by your words and inspired by your courage! I cannot imagine what you and your family are going through and what lies ahead, but I want you to know my thoughts and prayers are with you. Love, Lanie (aka Mom2Max from babyfit)
ReplyDeleteStephanie,
ReplyDeleteYou don't know me, but I came across your blog and had to comment. My son Michael was born with a rare urinary obstruction called megalourethra. He was not given a very good prognosis and all of the doctors said he would either be born stillborn or with very serious kidney problems. We were also told he had problems with his spine, heart, abdomen and lungs(VACTREL Assoc). I had a very difficult pregnancy as you can relate to and cried every day for my baby. If it weren't for the support and prayers of my friends and family I would not have been able to do this. My son was born crying and peeing thank the Lord. He does have a more mild form of megalourethra and hydronephrosis on his left kidney. None of the other things they said he had were there. Please know that you and your baby are in my prayers. You can get through this , the Lord is with you, his will be done.
You are my sunshine has always been a lullaby I sing to my son!...Continue to sing this to your Vayden, and I pray you both find comfort in this simple, beautiful tune..Thinking of you often, Heather (TEALITE)
ReplyDeleteMy name is Paula. I lost my son to LUTO in November of 2007. So much of what you said is how I feel/felt and those around me really did not understand. You are very lucky to have such supportive doctors, as mine were not. One of the people that helped me through when I found out my Devyn had LUTO was Georgi from Fetal Hope. She was truly heaven sent and understood totally how lonely and heartbreaking the walk is. I reached out in the dark and she, a perfect stranger, was there. I am forever grateful to her for her support. I send you blessing and understanding on this journey, and I know that Vayden knows how much he is cherished by you. If you are interested my blog is Tears For Devyn, and tells Devyn's story.
ReplyDelete