Day 1- Tough, Tough and more Tough

So as they say CDH babies have an honeymoon period, the first few days or so when they seem to be doing well but then all goes downhill. Well Atiksh has really not had much of an honeymoon period and is just having a tough first day. He is on an High Frequency Oscillating Ventilator which is helping him breathe. He is on a lower setting than what they started with him last night, which is a good thing.

The thing they are more worried with him right now is his pulmonary hypertension which is caused due to his lungs not being developed properly and hence puts pressure on the heart and pushes the body into an hypertensive crisis, where the blood pressure is low and the heart is strained to pump blood. They have him on Nitric Oxide to help with the pulmonary hypertension and they are going to add on two more medicines to see if he responds favorably to that.

If all that fails he would have to go on ECMO. I really want to avoid that, as once a baby goes on ECMO the survival rate drops dramatically. However I also know that some kids make it only because of ECMO and I am glad we are in a place where we can get it.

When everyone says it is a roller coaster you cannot even fathom it unless you are in one. It has been only 20 hours since he came into this world and I am already tired of the ups and downs. A minute he seems to be doing just fine and the next he is doing not so great. I am trying to do what I can, pump every 2 hours, go and talk to him for a few minutes and hope that things will improve.

We did make it a point to take Avy and show him in case he needs to go on ECMO etc we wanted Avy to be able to see him while he looked more like a baby and the experience was much harder than we anticipated. With questions like, “Why is my baby sick?”, “When can I take my baby home?” to telling Atiksh’s nurse before he left, “Take care of my baby brother” made the day much harder than it already was.

As I am typing this in tears, I do hope all your prayers and strength will help tomorrow be a better day for all of us. As you can imagine it is an hard journey for us and if we are not up to talking on the phone, I hope friends do understand.


21 comments on “Day 1- Tough, Tough and more Tough

  1. We have been keeping Atiksh in our prayers & have many folks in the CDH community joining in. Keep fighting little warrior!!!

    Shelly Moore
    CHERUBS Oregon Co-Rep

  2. Things are going to get better Anu! Be strong…You and baby Atiksh have been in my prayers for months now..Lots of love and hugs to all of you…

  3. Anu,
    Atiksh is in our prayers. Let God him all the power in the world to fight this.
    With all the love,
    Remya, Karthik & Adikuttan

  4. Praying for strength for you, your family and Atiksh, wisdom for the doctors, and patience for your loved ones. You can do it little A!

  5. Oh Anu, hugs! Our best wishes, love, prayers and positive energy are with you. Lots and lots of love to you, Atiksh and all of you. The littlest of all are sometimes the most courageous, bravest and strongest of all, aren’t they? More power to you, little one. HUGS HUGS and more HUGS to you, Anu

  6. Dear Aju and Anu
    God Bless Atiksh. Our prayers and positive vibes to all of you. Don’t worry Kutti will be fine.
    Hugs and kisses to all of you. Hope and pray
    He will fight out without having to go on ECMO
    Aparna Ram Nivi n Naveen

  7. Sending prayers…been thinking of you all day! Fight Atiksh fight, you can do it!

  8. Praying for your sweet little Atiksh, for strength for you and your family, and for wisdom for his doctors and nurses. Praying also that he doesn’t need ECMO.
    Hugs and love from Bonnie and family

  9. You are in our thoughts Nu. I look forward to more updates.

  10. Atiksh is in our prayers and he will definitely get stronger tomorrow.. Don’t worry Anu..

  11. Oh Anu! Not a day goes by without Darshu and I praying for you and Atiksh – I am sure everything is going to be just fine. I can’t even begin to imagine what this might be like for you. Loads of love and prayers to give you all the strength to fight through this.

  12. Anu,Be Brave,Our Prayers are with you and little A.

  13. Sending lots of hugs and prayers. It is a long, winding road, to be sure. Thinking of you!

  14. All our prayers are for the little one – Atiksh Krishna Ajit (AKA) aka The Fighter. This reminds of a scene from the film Anjali where the boy asks his mother why his sister is sick and very different from others. The mother says, it is because God felt we are the best family to take care of baby. It is God’s will that Atiksh cannot be in better hands. Ajit and you are very bold brave. These are tough times and we wish we could be with you all ….With lots of love for all the four.

  15. It’ll be alright soon da! Atiksh is in my prayers everyday!! He is your son -he’ll make it.

  16. our prayers and best wishes for a total recovery for atiksh. His battle with life will be won very soon. Let this roller coaster ride end soon. SAI RAM. Just keep chanting God’s name in his ears. He’s getting his energy and will to fight from you, Ajit and Avy. May God give u all the strength to fight his battle too for him. Take care.

  17. Take care little darling fighter…u r in our prayers…

  18. Dear Anu…my prayers are with you and the little one. Please be strong and dont let Avy feel the heat…Love you.

  19. Hey .. praying hard.. all the best.. he will get OK reallly soon.. let us know pls

  20. Best Wishes and prayers to little Atiksh, you, Ajit and Avy. I am certain that good things happen to good people. So, this phase will pass and everything will get better. My regards to your parents. Good luck keeping up the strength.
    Ramya, Taran, Vijay and Max.

  21. Hi Anu, Our thoughts and prayers are for you and little Atiksh. I’m impressed at your courage to take it one day at a time. I’m sure this is just a passing cloud in your life. We are all here praying for you and Ajith. Take care
    Prasanna, Murali, Namrita and Sachit (Aparna Ram’s friends)

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