1 Week Old

Happy bday Evon (bro-in-law)

Jane has 2 lines in her belly button, 1) food line, 2) blood pressure monitor. They become less reliable as time goes on; risk of infection increases after about one week. A PICC Line (Peripherally Inserted Central Catheter) is an alternative line to bring food to her. It is a small tube that is inserted either in the wrist or above the knee, then runs inside veins all the way to the heart. (Note: depending on what’s going thru the tube, some fluids need their own specific tube, to prevent clotting; i.e. blood transfusions, PGE medication, predigested food liquids, etc.)

They’ve been talking about putting a Picc line in for the last few days. This morning they made 3 attempts to put the Picc in, but were unsuccessful because veins in heart defect babies sometimes can be a bit difficult/different. Also, the insertion points were flat shaped veins.

On attempt #4, it finally worked. Below is a piece of the tube that was inserted.

Jane's PICC Line

Jane pretty much had a stable day, which is not a great thing, but definately not bad.

HUGE NEWS: Our doctors are going to have a pow-wow meeting with a panel of doctors, cardiologists, and surgeons tomorrow. The intent is to do some mega brainstorming. The resident and fellow doctors will present Jane and her condition to the panel, where there will be a bunch of different opinions on whether to perform surgery, wait a week, install a balloon, catheterization, try different medications, change doses of current medications, etc. The decision will ultimately be left up to the few great doctors that are responsible for her progress, who have been caring for her since day one.

I went all the way out to Whittier today, to the dentist, for a look at my toothache. I thought for sure I was going to need my wisdom teeth taken out right away (which I do eventually, so let me know if anyone has a good place). Turns out it’s a canker sore, and she told me it was caused by stress, and I can expect more to come. Wonderful. But atleast she said its not contageous.

Elisabeth & me: today was rough emotionally. It’s just hard and wearing down. Its so hard to see my innocent newborn with dozens of tubes and cables, and hooked up to machines. I did get good words from people that have been in my shoes, and that’s one of the few things that really comforts me, even when they tell me, that when I can’t handle more pain, more pain will come.

This passage was sent to me, and its exactly how I feel.

” 23 Awake, Lord! Why do you sleep? 
   Rouse yourself! Do not reject us forever. 
24 Why do you hide your face 
   and forget our misery and oppression?
 25 We are brought down to the dust; 
   our bodies cling to the ground. 
26 Rise up and help us; 
   rescue us because of your unfailing love.”

Ps 44

23 comments on “1 Week Old

  1. I pray God will give the doctors His wisdom in deciding the best treatment for Jane. That He will open their eyes to see. Our hearts are with you.

  2. Tracy Goosseff on said:

    Daniel & Elisabeth ~

    I have been keeping you all in prayer for weeks. May today be a GOOD one for you all! Praying for wisdom TODAY for the doctors treating your sweet little one.

    It is difficult seeing your child hooked up to countless tubes and wires. I’ve been there. My son (also a first-born) had open heart surgery at age two. His heart defect was not as serious as Jane’s, but it was still a scary, life-changing experience. (he had a subaortic membrane removed and sustained subaortic stenosis) When I see his scar now, it is a vivid reminder of the fragility of life, and the mercy and grace the Lord showed us. He is now an active, healthy & talented13 year old 🙂

    Even on those days when you are overwhelmed, He is with you. May you have peace and comfort during this time, and may He shower you with mercy and grace.

    Know that countless people are lifting you up in prayer ~ including us.

    With love,
    The Goosseffs
    John, Tracy, Stephen, Faith & Julia

  3. Thank you

  4. Praying for strength for you and Feta. God loves you guys and so do we.

  5. Dy. Mike on said:

    Daniel & Fetta,
    My heart aches along with everyone else who loves and cares for you. My petitions to our Lord include your family and that Gods ear may be attentively open to all who bring you before Him in prayer.

    I can’t say that I really know what you are going thru, but I do know a little about the experience of a new parent going thru such turmoil because a very precious little bundle of blessing, is in such a predicament fighting for the next breath. Iyared had his lung collapse at a few months old. 3 days in the hospital 1st few days very scary

    • Dy. Mike on said:

      Continued… (pushed wrong button, oops)
      Those days were very scary with us not really seeing much improvement and the doctors and nurses constantly poking and prodding every 2 to 3 hours. Very unsettling for parents! But like you, the knowledge, that we had people praying & visiting was so comforting. God is good and He is in control! We came to understand this and placed our faith in Him. Without Him we were stressed, anxious, scared and lost. We felt tired, & exhausted. We placed and accepted major burden , a heavy yoke we were carrying & our personal comfort was a long way off. In the distance our own illness was on the horizon because of this type of situation.
      When we feel this type of anxiety & burdens, we should try to remember and allow Christ’s words to have meaning for us. He said in John – Chapter 14, Verse 27:
      “I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid”
      We as believers place our trust in Him and allow Him to have His plan to work for the greater good. This is sometimes very difficult.
      Also King David provided these words of comfort – May the Lord strengthen us to accept these words even in times of despair. Psalms – Chapter 4, verse 8
      In peace I will lie down and sleep, for you alone, O LORD, will keep me safe.
      This is the difficult one, to allow us to find the comfort , rest & health for ourselves.
      May God Bless you & your baby Jane
      With our Love.

      Dy. Mike & Ty. Nadya

  6. Tatianna Federoff on said:

    And he said to me “My grace is sufficient for you, for my power is made perfect in weakness”.
    2 Corinthians 12:9

    May you feel the strength of our great Savior.

  7. Manya Mich on said:

    Our prayers are with you both and your precious little baby Jane. Hugs & prayers from Jay & Manya Michicoff.

  8. Elenna Poppin on said:

    Daniel, I’m praying the Lord would allow you to experience His presence, like a warm blanket or an arm around your shoulders, especially when its more than you think you can bear. Cry it all out to Him, even your fears and frustrations, even anger – He’s big enough and His lovingkindness can take it all. I’m praying for Jane’s doctors today; may God give them clarity, wisdom and direction for the best treatment plan possible, and prepare Jane for it. As soon as I am virus-free I want to come and visit – until then, may the Lord hold you all in the palm of His hand and fill you with His peace. xoxo Elenna

  9. Dya Paul & Tsa Sarra on said:

    Dear Daniel and Elizabeth:

    We just heard this morning of the birth of your Blessing from God…Your new Dochka Jane. We prayed for her to be born complete and whole..but the Will of God is that she be born according to his choosing. We will stay in fervent prayer for Your family for the complete healing of Jane….so she can become a mighty warrior professing her life as a witness for all to see. We ask this in the name of our Lord Jesus Christ.

    With Love,
    Dsa Paul & Tsa Sarra

  10. david pavloff on said:

    Just a reminder today that we are still here and still praying for you and Jane and the doctors. For you, comfort that only God can give, for Jane, health, for the doctors, wisdom from The Almighty God.
    John 14:27 “Peace I leave with you, My peace I give to you”
    In Christ,
    David and Tanya Pavloff

  11. S & L Volkoff on said:

    Happy Birthday Jane! We miss and love you so much!

  12. 2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

  13. Bill and Tam on said:

    D&E, Our hearts ache for you, and we (along with so many others) wish that we could take this pain away for you, that we could somehow make it all better. We pray for you everyday, all through the day, that the doctors will have the Lord’s wisdom and that their hearts and minds would be open to His guidence. We pray for you as parents and as a couple, that God’s love will wrap around you and keep you clinging to each other and to Him. Its okay cry out to God, to ask questions and want answers. He knows your worries, your fears, your questions, and all that you need to tell him in your hearts.
    “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:10-12
    All of us wish we knew the plan, too, so we could reassure you and make everything perfect, but in the meantime, we pray for your well-being, for the uplifting of your hearts and for the peace of God to dwell in your souls.

  14. Katsya Prohoroff on said:

    Daniel and Elisabeth,

    I just heard today about your newborn, Jane and the challenges that lie ahead of her. We are praying for God’s will for your family. I am so deeply touched by your willingness to share with us via your blog and can only imagine the heartache you both are going through.
    Know that you are all loved and prayed for and that you are not alone. Our family’s blood type is O+ and I’m not sure if we are able to help in this case, but if so, we will donate whatever we can!
    Love and hugs to your family…
    Ben and Katsya Prohoroff

  15. Jeff Kochergen on said:

    Hello Daniel
    May the protection of the Lords Angels, be with your family in this time and His mercy prevail. Our prayers are with yourselves.
    God Bless
    Jeff, Onya Kochergen

  16. Moe and Kat on said:

    Daniel, Elizabeth and Baby Jane,
    We just wanted to let you know we are praying for your family. Although our son is a healthy 2 year old, he had a few complications when he was first born, although not to the extent of your precious Jane. We know the pain, heartache and the longing you have to just hold her, even for a minute. But just know that she feels your presence and knows you are there with her. We will be keeping you in our prayers. God bless your family and know you have many people praying for her healing.

    With love,
    The Shubin’s
    Moisei, Kathleen and Elijah

  17. Ts. Manya Kor. on said:

    So many encouraging words and beautiful scripture that are being shared by everyone. Thank you again for sharing your journey with us; especially you being so honest about how “wearing” this is emotionally. I loved the post from Ts. Elenna reminding you (and us all) that we CAN be completely honest with our Lord about how we are feeling and struggling – He IS big enough to hear it all, and completely understands our heartaches and our pain. I love you guys SO much! You are in my constant prayers – and now that Ryan and Chloe are on their way home, I hope to pop in & see y’all again soon. “For I know the plans I have for you, ” declared the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”. Continuing to pray for the Lord to guide ALL the doctors and staff in their care for Jane, and for you for strength, wisdom, patience, and comfort.

  18. Ts Monya K on said:

    Dear D&E & Jane, If there were some way for us to take this burden from you, even if for a moment, we would….We don’t understand the ways of God, but His way is Perfect. Paul reminds us in his letter to the Phillipians that God will supply all our needs according to His riches in glory by Jesus Christ. (Phil 4:19) We humans get tired, sad, cranky….it is a hard burden that you are carrying, but, by your Faith, we are all becoming stronger. And in turn we continue to lift the 3 of you & your entire medical staff up in prayer, for continued strength thru Jesus Christ. Blessed 1 Week Little Jane

  19. Ts Nadya Bolotin on said:

    I am praying for your Baby Jane, for you and your wife, your family and for the doctors…..stay strong

  20. Suzanne V on said:

    I was just reading just now and this scripture just made me think of you guys. Psalm 94:18 “When I said my foot is slipping, your love, O Lord, supported me.” Our prayers are with you.

  21. Dr. Sasha Volkoff on said:

    Aside from my thoughts and prayers for Jane which are NUMBER ONE!…
    I happen to be the canker sore QUEEN. I get them SO bad that I get fevers, throbbing, burning, can’t eat, speak, irritable, headache… it’s all stress. Or chocolate. So – I have many cures for you!

    1. Gargle w/Listerine, the yellow one. it HURTS. after that, gargle with warm water w/salt.
    2. Over the counter Kanka. It’s a liquid that NUMBS it and WORKS. burns for a sec.
    3. Depending where the sore is.. Over the counter Canker Covers, which are tiny tablets that stick to the sore and form a gel, and make life barable.
    SO Worth it.

    Good luck!
    And tell Elisabeth and Jane I love them and YOU!


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