Friday, October 20, 2017

Our journey so far

I have been thinking about this for a while, 11 weeks exactly but no better time to start than during Down Syndrome awareness month. My son Laksh was born August 1st 2017 at 36 weeks gestation. All through pregnancy, some high risk doctors (one doctor in particular) kept scaring us into thinking my placenta isn't working , our baby boy isn't growing well (IUGR), I am starving my baby and that his heart might stop beating so I need to keep doing kick counts. (which would also just tell me he is fine at that moment). Turns out, my baby was growing perfectly well, but just not according to the growth charts they kept insisting he follow.

Thinking back to the day before he was born, we had just gone for my regular 36 week follow up appointment and was admitted due to low amniotic fluid and he was delivered via C-section the next morning. Damn that was quick. Once I heard his cry, I took a sigh of relief thinking now all our anxieties are over. The first thing the pediatrician told me was, " You know your baby has down syndrome, right?" Remember we had no markers during pregnancy and I remember telling her, you are talking about someone else's baby (even though we were the only one the in OR of course). Being a physical therapist, I have some knowledge about down syndrome and did not want that to be my son's reality. At least not at that time. I wanted to see my baby first. Not hear all this scary information. When my son was brought in the room, the pediatrician (I believe who was pregnant herself) came in and started demonstrating why she thinks he has down syndrome. She said, as you can see his eyes are almond shapes, his ears are oddly shaped, he has this single crease in his palm, and this gap in between his toe etc etc and all I kept thinking is, he looks perfect to me.

The next 24 hours were the best (even though I was in severe pain), I had my baby with me, could hold him without any wires or IV's, breast feed him without any concern of emesis, and just enjoy our special bond. I was in heaven until 8.30 in the morning when he threw up some green stuff (bile) and was instantly admitted to the NICU and later transferred to a more equipped NICU. That marked the start of our 2 month long stay in the NICU. I still remember when he was being wheeled into that scary looking transportation unit, I felt my heart would never heal. I was discharged the next day (one day early) and I went to the NICU where my son was right from the hospital. Took me 30 mins to walk 1000 feet but when I saw my baby, all pain was forgotten. 

Day 1 in the NICU

I remember the day we received confirmation of his diagnosis , I cried like I have never cried before. Mourning the loss of the child I thought I was having while never realizing that the child I do have is beyond perfect. He was also diagnosed with Hirschsrpung disease and needed surgery to remove part of his colon which wasn't working. The surgery was suppose to be 4 hours but ended up being 7 hours. The longest 7 hours of my life. Due to this he needed to be kept on the ventilator for another 12 hours. The sight of him laying there completely motionless is something I wouldn't wish on my worst enemy to have to endure. His surgeon did a fabulous job but 3 weeks post-op he developed adhesions and needed to be operated on again. He also got an IV burn on his left ankle which took almost 6 weeks to heal. 

IV burn on day 1, it got a whole lot worse before it healed

There were some good days, some very good days and some not so good days. Part of being in the NICU. I remember someone told me it would feel like a roller coaster ride. I did not understand or care about the analogy at first but towards the end, I understood what it meant. Here are some pictures of the good and very good days. 

Quality time with daddy, IV burn dressing on his ankle

The day we were told there might be a discharge in the near future

 Finally the day came when we were discharged after some training on feeding with a therapist. We are still on antibiotics, multivitamins, rectal dilatation twice a day but we are HOME. Recently got a wound infection on the site of incision, added another antibiotics to his schedule. My baby is so strong even when he is so tiny. It makes me realize that I need to be strong for him as well and need to share his story with the world. Hence, this blog. Hopefully I would be able to help a few others in the process like some amazing bloggers who have helped me.

Special mention:
among many others.

All set to go home, 2 months and 2 days after birth. My precious baby.  A little something I feel fits the way I feel for you.

 “I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”  

                                                                                        — Kiersten White, The Chaos of Stars.

Also, a big thank you to the NICU team at Bellevue hospital.

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