Saturday, March 13, 2021

Asher grew to his birthweight!

 Baby boy Asher is growing happily in the nicu and we feel so blessed that he has not had any major incidents yet. He reached 1.08kg today, about 25 grams more than his birthweight!!! This is a huge milestone ahead of time and a total relief for us!  Each day he has a few 'events' as the nurses call it where his heartbeat drops, his respirations slow and his oxygen saturation falls fast.  But this is all part of the process and so far Asher has been able to self-resolve each time and bring himself back.  His brain is just learning how to live outside the womb a little sooner than it was prepared for.  It's a little terrifying each time we see it happen, but we know that he is in the best place to receive any care and intervention that might arise.  It is also scary to see that sometimes if his little head isn't positioned in the correct way he's unable to breathe and has a similar type of event, but this is overcome quickly by just tilting his head in a certain angle to open up his airway.

Overall Asher is gaining weight slowly but surely and tolerating the continued increasing amount of food that he's receiving every 3 hours.  Mama Julia is making enough milk for him which is an amazing feeling for her to know that she is nourishing and growing our little man through her continual pumping (every 2-3 hours).  I know it is exhausting at times for her, and she is staying so strong and brave for our baby boy.  What an angel!

Asher is still on and off phototherapy because he needs some assistance as his body continues to learn how to process bilirubin.  The nurses are fortifying the breastmilk with extra calories as well because he needs a little more energy than most babies to develop his premature body in so many different ways.  He still has his peripherally inserted central catheter (picc) line which provides him with additional proteins and nutrients until he reaches full feeds, but it seems like the doctors and nurses feel comfortable removing that in the next few days which will be a huge milestone for Asher.  He was removed from the cpap earlier this week and right now he is still receiving some help breathing through his nasal cannula that provides 2 liters per minute at regular room oxygen levels (21%).  We are also going to see how he manages breathing as we slowly decrease the extra flow later this week.  He's really doing so well in many many ways in thanks to the expert and loving care from the wonderful and talented nurses and doctors at Rady's Children Hospital.  It's a miracle to us that he is looking so good and growing so much every day.  We are so hopeful that he can continue to progress without any huge obstacles or setbacks, but we are also remaining grounded and realistic in knowing that there is a long and bumpy road ahead before this little man can come home.

Julia is recovering so well from her c-section, and her incision already looks 90% healed.  I am so relieved that she is taking such good care of herself and leaning on those around her to help support her in this difficult and ongoing recovery.  It is hard enough for me as a dad to manage everything with our son in the nicu, and I am just continually inspired, impressed and amazed at how she's holding it all together, staying positive and doing all she can for our growing family.  It is absolutely the most difficult thing for us both as we have had many moments throughout the week where we've felt completely overwhelmed, out of touch, out of sync and hopeless.  But so far we have been able to lift each other up, reach out to those we love, get back up and keep moving forward through everything that arises.

It's really tough to worry so much about our baby boy all the time, and it's not a natural feeling for both of us as we are normally very easy-going, relaxed and accepting people.  But we are definitely struggling with the daily realities of our teeny tiny little person on continual monitoring and in a constant fight to survive.  We know these types of things happen, that it's out of our control, that there's nothing else we could have done, but it doesn't stop the totally normal thoughts from coming up like... 

why us... will our baby be ok... will anything feel normal again...

There is the struggle that Asher is facing just to survive and there is the struggle that we are facing just to get into a routine of Julia pumping, going to the nicu, having meals and snacks to take with us for the whole day, doing some relaxing activities for our self-care, and trying to find ways to do as much as we can for this baby even though we can't really do anything right now besides hold him for a couple of hours a day.  It really is hard to be a nicu parent.  It's wearing, it's tiring, and there's no way around it.  The NICU is full of really kind and caring people, but it's not a comfortable place to spend so much time.  We put forward our brave and joyful spirit, but it's exhausting to sit in a room while our baby is in a sudo-womb isolette next to us.  It's such a hard feeling to explain.  It's like there's no place I'd rather be and yet it's also not a place I want to be.  But it's a place that's saving our boy's life and for that I am beyond grateful and filled with so much appreciation for the amazing people and the advanced facility that's keeping him alive. Still, nothing is normal, we might never find a routine, we might not find comfort for a few months - and that's all ok too.  We are going to do the best we can, but I think it's more normal to be uncomfortable while this is happening than to feel like we have it all under control.  I'm trying to learn to live in the chaos, to focus on one thing at a time and to do everything I can to ensure that Julia doesn't have to do anything so she can recover and use her energy for milk.  

So all in all - Asher is growing really well and progressing amazingly in the NICU.  His parents are definitely struggling to keep up with balancing spending as much time as we can with him in the NICU and all the other parts of just living life.  Today was also our dog's 3rd birthday and I forgot to get him a special pupcake.  But we did give him extra treats and lots of love.  Here are some wonderful pics of our sweet little angel

Asher asleep on mama's chest

Asher wavin to his fans

asher already learning the side eye

Takin a bigggg yawn

little man deep in contemplation

we took his first feet and hand prints at 31 weeks old!

Julia next to the cool whale cover that keeps it dark for baby boy

Asher on his new whale sheets - we want him to grow big and fat!

sticking his tounge out at dad <3

Julia's happy place with her baby on her chest

Dad loves to hold his little son

Asher is coming home today

 The day has finally arrived for us to bring our baby home and we are over the moon thrilled.  We are here on day 38 of our NICU journey, an...